Into the Fray!

[DrBee]

Hi Friends, got a LOT to report today! DH and I (to review, he's 49, I'm 45, both lifelong runners and nonsmokers) just got home an hour ago and are both pretty exhausted and I'm trying to also just spend some time with him doing something non-cancery, so will try to keep this shortish (for me). Nutshell....

Good news: brain MRI clear, PET clear in terms of spread to other organs, but due to supraclavicular and axillary lymph nodes we're classed as stage IV.  It seems to be a pretty aggressive tumor so chemo starts next week. We are excited to get underway!

In the meantime, I know some of our longterm survivors here were Stage III (like Tom and Donna) when diagnosed. Would love to hear from longterm survivors  diagnosed at IV, and also if they have ever been declared NED. (Thanks to Roz for the quick reply on the other forum!) (I am sure some others of you have told me you were diagnosed at this stage and I am just having swiss cheese brain today).

Good news: Starting so soon! Our oncologist, who I really liked, suggested we will basically be in treatment til it stops working, then try something else. (Sounds like this is the common approach to Stage IV? My bestie who had breast cancer two years ago thought that stage IV was in part defined by always basically being in treatment, as well as by spread of disease).  Starting with chemo (carbo and alimta) plus keytruda every three weeks.  After 4 treatments we lose the carbo and go to stick with just the pemetrexed instead. 

Good news: Apparently DH's PDL1 test score was 99%+ so excellent chance of responding to Keytruda.

Less awesome news: (On the other hand, apparently Veristrat indicated he had only a 10% chance of responding to the chemos for which it tests sensitivity...but those aren't the ones we're starting anyway, so kinda confused on that.) Don't worry, I'll research all the PDL1 and Veristrat stuff myself...

Other less awesome news: I was a bit troubled that doc said he didn't see radiation or surgery as potentially "curative" in our situation,  and might be considered for palliative reasons only. I was so surprised because so many folks seem to have had success with cyberknife, traditional radiation, and surgeries here.  I don't know if having lymph nodes somewhat widely distributed was reason for this, and if we're likely to be able to get him to reconsider later. I know some of you have pushed for surgery, and would appreciate input on that at some point.

I'll wrote more  on the other side of some downtime with hubs....in meantime just trying to refresh my memory on how many Stage IV folks we've got here.  Susan and Roz both are! Additionally, I find myself feeling guardedly optimistic about our way forward. Am I kidding myself that there's a good chance I'll get to keep this guy around for at least a couple of years, and perhaps significantly longer?  That he may start feeling better, lose the current cough and be able to return to some kind of exercise? I realise each of these questions needs to be researched here....I'm sure answers are already here somewhere. 

Much love to this whole community. Two diff docs commented today on how thoroughly I'd done my research - and you all know I'm just getting started! I basically told them all my research was essentially hanging out on this forum. 

 

[BridgetO]

Well, it does look like good news and bad news! I'm sure you'll hear from stage 4 folks.  You're not at all kidding yourself to think you'll keep this guy around for a couple of years and longer and good years, too.  I can't remember whether I (or maybe Tom, he likes this , too) sent you the Stephen Jay Gould article on survival statistics. Rather than go back and look through all the posts, I'll risk being repettious and send it again: Here's  the YouTube. If you prefer print, you can find it in that form, too. 

About radiation and surgery, you can always get a second opinion. This doesn't mean changing docs or not going ahead with the scheduled treatment in the meantime.

When I had my stage 3 gyn cancer, I was concerned because one of the docs who reviewed my case at a Tumor Board thought I needed addtional chem beyond what my medical oncologist planned. My med onc didn't think so. My cancer was  rare type, and also aggressive, so treatment didn't seem cut and dried. I sought a second opinion at Oregon Health Scieces University, and the doc there recommended addtional chemo. My med onc agreed to follow her recommendations, because, she wrote, the patient wants to do this because she understands the 'dismal prognosis". Dismal or no, here I am NED 7 years later. So I'm a proponent of second opinions  whenever someone has concerns.

Bridget O

[DrBee]

1 hour ago, BridgetO said:

Well, it does look like good news and bad news! I'm sure you'll hear from stage 4 folks.  You're not at all kidding yourself to think you'll keep this guy around for a couple of years and longer and good years, too.  I can't remember whether I (or maybe Tom, he likes this , too) sent you the Stephen Jay Gould article on survival statistics. Rather than go back and look through all the posts, I'll risk being repettious and send it again: Here's  the YouTube. If you prefer print, you can find it in that form, too. 

About radiation and surgery, you can always get a second opinion. This doesn't mean changing docs or not going ahead with the scheduled treatment in the meantime.

When I had my stage 3 gyn cancer, I was concerned because one of the docs who reviewed my case at a Tumor Board thought I needed addtional chem beyond what my medical oncologist planned. My med onc didn't think so. My cancer was  rare type, and also aggressive, so treatment didn't seem cut and dried. I sought a second opinion at Oregon Health Scieces University, and the doc there recommended addtional chemo. My med onc agreed to follow her recommendations, because, she wrote, the patient wants to do this because she understands the 'dismal prognosis". Dismal or no, here I am NED 7 years later. So I'm a proponent of second opinions  whenever someone has concerns.

Bridget O

Bridget, reading this article now. Thank you SO much. Also, finding comfort in applying my stats training to this. ❤️

 

[Tom Galli]

DrBee,

Radio oncologists in Dallas are getting very aggressive in treating Stage IV disease with precision radiation. I attended a conference several months ago on Precision Radiation and the Abscopal Effect delivered by Dr. Wilhelm Lubbe, MD, PhD.  He said radio oncologists are trying to be heard over the pharmacy industry pushing targeted therapy and immunotherapy drugs. So, I’d continue with chemo but audition a radio oncologist who favors aggressive treatment. 

While my original dx was IIIB, I was treated as Stage IV when mets showed in my remaining lung. Chemo did sustain me till SBRT (CyberKnife) was approved for lung tumors. I really believe my long period of NED is attributed to precision radiation and the abscopal effect. So does Dr. Lubbe. Moreover, I don’t see how widely distributed mets affects a precision radiation treatment. Chemo should handle free cancer cells in the lymphatic system. 

Lung cancer is aggressive. Push for aggressive treatment. 

Stay the course. 

Tom

[DrBee]

4 hours ago, Tom Galli said:

DrBee,

Radio oncologists in Dallas are getting very aggressive in treating Stage IV disease with precision radiation. I attended a conference several months ago on Precision Radiation and the Abscopal Effect delivered by Dr. Wilhelm Lubbe, MD, PhD.  He said radio oncologists are trying to be heard over the pharmacy industry pushing targeted therapy and immunotherapy drugs. So, I’d continue with chemo but audition a radio oncologist who favors aggressive treatment. 

While my original dx was IIIB, I was treated as Stage IV when mets showed in my remaining lung. Chemo did sustain me till SBRT (CyberKnife) was approved for lung tumors. I really believe my long period of NED is attributed to precision radiation and the abscopal effect. So does Dr. Lubbe. Moreover, I don’t see how widely distributed mets affects a precision radiation treatment. Chemo should handle free cancer cells in the lymphatic system. 

Lung cancer is aggressive. Push for aggressive treatment. 

Stay the course. 

Tom

Thank you Tom! I stayed up as late as I could last night hoping other Stage IV folks would chime in ( I guess we could count you as an honorary Stage IV...some honor, eh?) This community has been so incredibly useful for keeping up my hopes, and helping me educate myself thus far. I feel I have never needed it more than right now. I am in turns hopeful, tearful, angry, and scared.  So I am really hoping to hear from others.

Radiation: I too have been confused regarding why we cannot look at precision radiation. Can precision radiation not be used on lymph nodes? Is that an issue? 

I need to go back over the notes I made during our onco appt yesterday, but hubby said he thought that doc said surgery wasn't an option because they'd have to take so much of the lung -- but that they'd have to do that because of lymph node involvement, not because of the size of the lung mass. I need to clarify this with him..I really want to send an email but I will probably assemble all these questions and ask them when we see the doc at the first chemo appt next week. 

Tom thank you again for replying (are you still on your cruise?). Your wisdom is so, so helpful. 

Our one year wedding anniversary is in two days, so trying to design a card and plan something we can do while not crying my eyes out. Fortunately, hubby seems pretty calm (engineer, like you!, so hard to tell :)) and so that is helpful. 

With gratitude, 

Bethany

 

[Tom Galli]

Bethany,

Everything I’ve read and heard at the Lubbe conference suggests precision radiation can be used almost everywhere. That said, some nodes close to the heart or major cardiopulmonary vessels might present a problem. But for the garden variety nodes, it is very effective. 

I’ve never tried to search dx stage and survivor tenure on this site. Wouldn’t know how to make such a search. But lifespan is not only about time, it is quality time. As an accomplished lung cancer survivor, my view on time is to ignore the past, declare the future irrelevant, and live in the day. 

Stay the course. 

Tom

[DrBee]

1 hour ago, Tom Galli said:

Bethany,

Everything I’ve read and heard at the Lubbe conference suggests precision radiation can be used almost everywhere. That said, some nodes close to the heart or major cardiopulmonary vessels might present a problem. But for the garden variety nodes, it is very effective. 

I’ve never tried to search dx stage and survivor tenure on this site. Wouldn’t know how to make such a search. But lifespan is not only about time, it is quality time. As an accomplished lung cancer survivor, my view on time is to ignore the past, declare the future irrelevant, and live in the day. 

Stay the course. 

Tom

And once again am out of likes, but wanted to say thank you. The encouragement of you and others on this site encouraged me to send a message to onco re precision radiation, and I will followup in person bc we are supposed to see him next week. 

I completely agree, too, about quality of time, rather than time, being essential. Just in shock and looking to bolster my hope. You have all become essential to me on that front. ❤️

 

[DrBee]

6 hours ago, Tom Galli said:

Bethany,

Everything I’ve read and heard at the Lubbe conference suggests precision radiation can be used almost everywhere. That said, some nodes close to the heart or major cardiopulmonary vessels might present a problem. But for the garden variety nodes, it is very effective. 

I’ve never tried to search dx stage and survivor tenure on this site. Wouldn’t know how to make such a search. But lifespan is not only about time, it is quality time. As an accomplished lung cancer survivor, my view on time is to ignore the past, declare the future irrelevant, and live in the day. 

Stay the course. 

Tom

Tom, so we posed this question this afternoon to our oncologist and heard back from his nurse via email- they said they would reach out via phone on Monday. But their brief email response was that targeted radiation would mean that we had to wait for chemo and immunotherapy, which they thought was more important since it Works throughout the body.. I had no idea that targeted radiation couldn't be done at the same time as chemo. It seemed to me like many folks on this forum, perhaps including you- I'll have to go back and double check - have done them in conjunction!

[Tom Galli]

Bethany,

Of course I’m not a doctor. But I do know precision radiation and chemotherapy are often given together. 

Sometimes the old medical adage applies: go to a problem with a surgeon, one gets a surgical solution; a medical oncologist, one gets a chemotherapy therapy solution. 

Radiation oncology is its own discipline. I think you need to keep your medical oncology solution working while you seek a radiation oncology solution. 

My view, together both these two different approaches yield the best and lasting outcomes. 

Stay the course. 

Tom

[DrBee]

13 hours ago, Tom Galli said:

Bethany,

Of course I’m not a doctor. But I do know precision radiation and chemotherapy are often given together. 

Sometimes the old medical adage applies: go to a problem with a surgeon, one gets a surgical solution; a medical oncologist, one gets a chemotherapy therapy solution. 

Radiation oncology is its own discipline. I think you need to keep your medical oncology solution working while you seek a radiation oncology solution. 

My view, together both these two different approaches yield the best and lasting outcomes. 

Stay the course. 

Tom

Tom, Thank you so much! Encouraged by you, Bridget and others, I have the radiation oncology dept's appointment line at the top of my "to call" list Monday!

[Johnny5]

Tom and DrBree, I want to comment but decided to complete the rest of the threads in this section.

[DrBee]

Asked about this on immunotherapy forum but thought I'd cast a net more widely. (Please someone let me know if posting same thing on diff forums is poor etiquette! :))

I've shared, I think, that DH''s main symptoms are fatigue and [even moreso] cough (brought on by movement, change of position, eating, and talking). Since getting bad the last 6 weeks, they have had a serious impact on quality of life, because he doesn't want to go out in a lot of public places (restaurants etc) with the cough, and our favorite thing to do together - going for walks and bikerides together looking for birds and other animals - has been seriously curtailed. He doesn't want to move much because of the cough -and, of course, the less hemoves, the more his overall cardio fitness is being impacted. (Of course good old LC is to blame in part as well.)

He is 49, was just dx'd Stage IV. Mass in UR lobe is appr. 9cm x 4 x 5; also has lymph node involvement on both sides of lung as well as one superclavicular and a few axillary. No other organ system involvement at this point. 

The doc has said he has no activity restrictions, except as tolerated, just not to overexert. Yesterday we went for a 3m walk and he was totally wiped afterward. 

All of which is a very wordy way of asking: When on keytruda, to what extent, and how soon , did you see symptom alleviation? Also, I've been trying to find information on the proportion of folks that respond to Keytruda (his PDL1 score is 99%). So far the google hasn't helped me out there much, yet! I should have just asked here first!

[LexieCat]

I don't think anyone here cares about the "etiquette" of posting on multiple forums.  I don't know that it helps, particularly--this isn't a huge forum with hundreds of posts every day--I think posting on one forum will catch the attention of members.  I usually at least glance at posts on forums that aren't relevant to me, personally, just in case I can provide anything useful in response.  One post with a very descriptive heading is usually sufficient, I think, to get the attention of anyone with relevant knowledge or experience.  Just start a new thread with a descriptive heading when you're after specific information.

I'm going to suggest a resource that might have more helpful information along the lines of medical research (which would be much more useful than knowing how fast a few people on this forum responded to specific treatment--which might or might not reflect what your experience is likely to be).  One of my doctors gave me a login for this site, which was free for the first 30 days or something (with the referral).  The ongoing subscription cost, though, is fairly reasonable.  I renewed it for the first few months after my diagnosis and surgery, but then let it lapse as I wasn't dealing with ongoing treatment.

Here's the site: www.uptodate.com.  It's got searchable medical research, including the very latest research, along with treatment protocol information.  I found it really helpful in understanding various details I wanted to know about.  Check it out--maybe you will find some of the info you're looking for.

ETA:  According to the website, you can cancel a subscription within 60 days and get a full refund.

[DrBee]

6 hours ago, LexieCat said:

I don't think anyone here cares about the "etiquette" of posting on multiple forums.  I don't know that it helps, particularly--this isn't a huge forum with hundreds of posts every day--I think posting on one forum will catch the attention of members.  I usually at least glance at posts on forums that aren't relevant to me, personally, just in case I can provide anything useful in response.  One post with a very descriptive heading is usually sufficient, I think, to get the attention of anyone with relevant knowledge or experience.  Just start a new thread with a descriptive heading when you're after specific information.

I'm going to suggest a resource that might have more helpful information along the lines of medical research (which would be much more useful than knowing how fast a few people on this forum responded to specific treatment--which might or might not reflect what your experience is likely to be).  One of my doctors gave me a login for this site, which was free for the first 30 days or something (with the referral).  The ongoing subscription cost, though, is fairly reasonable.  I renewed it for the first few months after my diagnosis and surgery, but then let it lapse as I wasn't dealing with ongoing treatment.

Here's the site: www.uptodate.com.  It's got searchable medical research, including the very latest research, along with treatment protocol information.  I found it really helpful in understanding various details I wanted to know about.  Check it out--maybe you will find some of the info you're looking for.

ETA:  According to the website, you can cancel a subscription within 60 days and get a full refund.

And again I am out of likes! BUT....FANTASTIC SUGGESTION about UpToDate. I was able to get a guest pass for a trial and went on as soon as I read this post. Have been on there the last half hour! 

Yes, I guess I like hearing people's actual experiences, but you are right. We need all the weapons possible in our arsenal. What  a terrific resource that site is! ❤️

How was Hamilton?!!

[DDOT]

On ‎8‎/‎3‎/‎2018 at 8:23 AM, DrBee said:

Thank you Tom! I stayed up as late as I could last night hoping other Stage IV folks would chime in ( I guess we could count you as an honorary Stage IV...some honor, eh?) This community has been so incredibly useful for keeping up my hopes, and helping me educate myself thus far. I feel I have never needed it more than right now. I am in turns hopeful, tearful, angry, and scared.  So I am really hoping to hear from others.
Radiation: I too have been confused regarding why we cannot look at precision radiation. Can precision radiation not be used on lymph nodes? Is that an issue? Our one year wedding anniversary is in two days, so trying to design a card and plan something we can do while not crying my eyes out. Fortunately, hubby seems pretty calm (engineer, like you!, so hard to tell :)) and so that is helpful. 

With gratitude, 

Bethany

 

Bethany,

So sorry I could not add to this discussion of radiation, chemotherapy, Keytruda and surgery earlier. We had some ER trips this week. First, my husband is 70 and nonsmoker weighs 150, and looks very healthy, no cough or SOB. Tumor was found while having chest xray for unrelated surgery. He was dx 6/1/2018, our 50th Wedding Anniversary. Our children had a celebration planned for two days later so thru many tears and hugs, we cancelled everything. I know what you meant about the card tears and everything.The month of June was blood tests, numerous CTs with and w/o contrast, needle biopsy, tissue studies to check if adrenal tumor came from lung and other studies for mutation drivers, endoscopy with ultrasound of stomach and several biopsies finally his DX was Stage IV nsclc with dominant  upper lobe tumor of right lung, right hilar lymphadenopathy and metastasized to his left adrenal gland, tumor the size of tennis ball.  Surgery is not an option because the Oncology Surgeon is trying to keep the tumor enclosed within lung and involves right hilar lymph nodes which lay against a bundle of major blood vessels. For now radiation is not an option because of where the hilar nodes are located and no radiation to adrenal mass because it is too large and could possibly damage his left kidney, pancreas, stomach and spleen. His 1st Chemotherapy was July 13 and he receives Keytruda(Pembrolizumab), then Alimta(Pemetrexed), then Carboplatin(Paraplatin). This takes about 4 hours, and he has an implanted low profile port. I recommend one to protect your husband's veins. They take blood tests and everything using the port, he has a lot less sticks. He receives this every 21 days, he gets this combo again 8/10. After four rounds they will do another PET Scan to check response, then we do four more rounds and another PET Scan. I have no facts for you but I am praying fervently that these drugs are working. So far he has had no bad side effects, except for being so tired. We are still waiting on the final test for driver mutations. His PDL1 was 45 but they went with the Keytruda anyway. Never give up and insist they look at your research or use trials. And make phone calls, I know I'm a pest. When we go to the Oncology Lung Group, we take a Paramedic/his sister and a registered nurse/our DIL.  Dorothy

[DrBee]

1 minute ago, DDOT said:

Bethany,

So sorry I could not add to this discussion of radiation, chemotherapy, Keytruda and surgery earlier. We had some ER trips this week. First, my husband is 70 and nonsmoker weighs 150, and looks very healthy, no cough or SOB. Tumor was found while having chest xray for unrelated surgery. He was dx 6/1/2018, our 50th Wedding Anniversary. Our children had a celebration planned for two days later so thru many tears and hugs, we cancelled everything. I know what you meant about the card tears and everything.The month of June was blood tests, numerous CTs with and w/o contrast, needle biopsy, tissue studies to check if adrenal tumor came from lung and other studies for mutation drivers, endoscopy with ultrasound of stomach and several biopsies finally his DX was Stage IV nsclc with dominant  upper lobe tumor of right lung, right hilar lymphadenopathy and metastasized to his left adrenal gland, tumor the size of tennis ball.  Surgery is not an option because the Oncology Surgeon is trying to keep the tumor enclosed within lung and involves right hilar lymph nodes which lay against a bundle of major blood vessels. For now radiation is not an option because of where the hilar nodes are located and no radiation to adrenal mass because it is too large and could possibly damage his left kidney, pancreas, stomach and spleen. His 1st Chemotherapy was July 13 and he receives Keytruda(Pembrolizumab), then Alimta(Pemetrexed), then Carboplatin(Paraplatin). This takes about 4 hours, and he has an implanted low profile port. I recommend one to protect your husband's veins. They take blood tests and everything using the port, he has a lot less sticks. He receives this every 21 days, he gets this combo again 8/10. After four rounds they will do another PET Scan to check response, then we do four more rounds and another PET Scan. I have no facts for you but I am praying fervently that these drugs are working. So far he has had no bad side effects, except for being so tired. We are still waiting on the final test for driver mutations. His PDL1 was 45 but they went with the Keytruda anyway.  Dorothy

Hi Dorothy!  

So sorry to hear about your ER trips and thank you so much for this (as usual, out of "likes" for the day). We have parallels: my hubby was dx'd three days before our FIRST wedding anniversary! ❤️ We too have upper lobe tumor of right lung (I believe 9x4xsomething), right hilar and mediastinal lymphadenopathy, and then stage 4 thanks to the rogue lymph nodes (axillary and supraclavicular). Your explanation of the issues with radiation given which lymph nodes are involved is actually really helpful  and helping to give me a sense of why sometimes the decision is made to not do radiation. (I assume you asked about targetted radiation like SBRT or Cyberknife as well? Not sure if the risks you describe pertain to both conventional  and targetted radiation...)

Sounds like we will be on the same cocktail too! Just starting about 3 weeks behind you. (Not really my ideal of a fun cocktail, but we'll take it! :))

I am familiar with ports because my bestie went through breast cancer two years ago and had one. At Northwestern we were told that we could request one but that they like to try without first, just to spare the pt going through an addl invasive procedure of port placement. Weird. I think DH right now is game to try without the port, but it DOES make it all seem a lot easier. 

Interestingly, they are scanning after just 2 rounds (so in 6 weeks).  If it looks good they will go down to every 9 weeks. So I guess we will be getting a bit more frequent scanxiety than you! But I am ok with that because I know I will be going crazy wondering if it is working, so if it were up to me, I'd be scanning that boy every week!  Maybe it's just our onc's preference to do it more frequently,  or because he said we have  a pretty aggressive tumor on our hands (so he might want to get a sense of what's up sooner rather than later). 

I think PDL1 of 45 sounds pretty good! 

Does he feel any better since starting the Keytruda? Or was he not feeling bad to start with? You are SO fortunate not to have had cough or SOB. We have cough and intense GERD-like symptoms that are really wiping him out, we think possibly because of which nodes are inflamed, and we hope the Keytruda will start to work its magic on these at some point soon. 

I will look forward to following your journey because it seems we are on the same basic treatment path (just a little behind you guys!)

Hugs and strength, 
Bethany

[DDOT]

Dr.Bee  ,  thank you for your concern. It is a tortured journey we are on because my husband likes an orderly progression on any project. He doesn't like indecision, I've told him they look at everything to see what suits him. Yes, we asked about SBRT and the risk was high for the tumor on his adrenal gland. The tumor was so close to and in front of and behind many organs  No surgery, even with the Cyberknife because they cannot be sure of getting all the cancer cells in his lung and lymph nodes. Right now , he has it in two places lung and adrenal gland and they want to keep those contained. The oncologist has told us they cannot kill it but they want to control it. If the chemo cocktail works he will then stay on Keytruda for as long as possible.  As for the port, he wasn't completely out they called it twilight but he was still really out in recovery. The placement only took about 20 minutes and they used it for testing and Chemo Cocktail the next day. Just something to think about and question them further. I think they're being more aggressive with your husband to slow it down because he has an aggressive tumor. My SIL took chemo and radiation together for her lung cancer. Al doesn't think he can tell any difference except he thinks that large tumor on his adrenal gland feels smaller and has less pressure on his stomach. Before his treatment he was having GERD so they started him on Pepcid and after they started him on Bentyl for severe stomach spasms. We, too, are not going out because the Oncologist said his resistance would be way down and he could not fight infection. He said I'm giving him cabin fever. 😊 I will keep you posted. And both of you stay positive, there are so many things they can do for cancer today. Hugs and Strength to you both, Bethany.

[DDOT]

38 minutes ago, DrBee said:

Hi Dorothy!

Does he feel any better since starting the Keytruda? Or was he not feeling bad to start with? You are SO fortunate not to have had cough or SOB. We have cough and intense GERD-like symptoms that are really wiping him out, we think possibly because of which nodes are inflamed, and we hope the Keytruda will start to work its magic on these at some point soon. I will look forward to following your journey because it seems we are on the same basic treatment path (just a little behind you guys!)

Hugs and strength, Bethany

Bethany,

I forgot to tell you one of our trips to the ER was for coughing up blood. He has never had that so maybe the cocktail is working on the tumor in his lung. It wasn't a big problem but they kept him overnight to give him IVs and watch his blood counts until morning. And make sure there were no more episodes. We live in the country about an hour drive away from our hospital so they were being safe. Came home the next day and the IVs seemed to give him energy. 

Hope you both have a better week.

Dorothy

[DrBee]

1 hour ago, DDOT said:

Dr.Bee  ,  thank you for your concern. It is a tortured journey we are on because my husband likes an orderly progression on any project. He doesn't like indecision, I've told him they look at everything to see what suits him. Yes, we asked about SBRT and the risk was high for the tumor on his adrenal gland. The tumor was so close to and in front of and behind many organs  No surgery, even with the Cyberknife because they cannot be sure of getting all the cancer cells in his lung and lymph nodes. Right now , he has it in two places lung and adrenal gland and they want to keep those contained. The oncologist has told us they cannot kill it but they want to control it. If the chemo cocktail works he will then stay on Keytruda for as long as possible.  As for the port, he wasn't completely out they called it twilight but he was still really out in recovery. The placement only took about 20 minutes and they used it for testing and Chemo Cocktail the next day. Just something to think about and question them further. I think they're being more aggressive with your husband to slow it down because he has an aggressive tumor. My SIL took chemo and radiation together for her lung cancer. Al doesn't think he can tell any difference except he thinks that large tumor on his adrenal gland feels smaller and has less pressure on his stomach. Before his treatment he was having GERD so they started him on Pepcid and after they started him on Bentyl for severe stomach spasms. We, too, are not going out because the Oncologist said his resistance would be way down and he could not fight infection. He said I'm giving him cabin fever. 😊 I will keep you posted. And both of you stay positive, there are so many things they can do for cancer today. Hugs and Strength to you both, Bethany.

Dorothy, 

I totally sympathise with Al. Lou also likes orderly progression (he's an engineer) and, though he hasn't said this, I think the uncertainty is really hard on him. (Me too, fwiw! :)) I think that's one of the reasons that many of the veterans in this community really emphasise taking things one day at a time and trying to live in the moment. As for us, we have a few decisions to make that are going to be based on hoping for the best but also trying to make the most of each day (mainly, moving house and going forward with transfer of embryos we have banked). 

I didn't realise that Cyberknife was out if they were afraid of not being able to get it all. I have a LOT to learn. I plan to call Northwestern's radiation oncology dept in the am to schedule a consult, if only to get a better understand of that side of things and see if they agree with our med. oncologist that it would delay starting our chemo/immuno treatment, since that's not something I've been hearing from other folks here. 

The fact that Al is feeling ANY difference after just the one treatment, and after 3 weeks, seems like a good sign. Especially if he wasn't really feeling bad before (besides the GERD - not to minimise that because it sounds awful. Lou's taking Pepcid as well, and just had me pick up Prevacid. We hope that these (plus probably Zofran) will keep GERD and nausea at bay until the Keytruda has time to work (fingers crossed it does!) Were the stomach spasms brought on by the Keytruda, or do you know? 

Interestingly, we haven't been warned about his resistence being way down, but he feels so crummy and fatigued anyway that he's not even tempted to go out much.  I am glad to hear Al is feeling good enough to want to go out! Cabin fever is a good problem to have in this instance! 

Aggressiveness: did they give you all a grade for Al's cancer? They didn't give us one, but the reference to it as "aggressive" makes us assume a high-ish grade. I've read that grade matters less for treatment decisions with LC than for some other cancers, but clearly we'd rather it weren't aggressive!

What did the ER tell you about the coughing up blood? Were they able to determine a cause? I do hope that's a sign things are working! I'm sorry to hear it is such a long drive for you. (Although living in the country sounds very therapeutic!) Fingers crossed and sending you many good thoughts! ❤️ May it be a good week for all of us. Our first infusion looks like it'll be the day before your second. 

Bethany

[LexieCat]

9 hours ago, DrBee said:

How was Hamilton?!!

It was TERRIFIC, thanks!  One of those shows one could see over and over (with an unlimited budget, lol).  I'm actually going to see it for the third time when it comes to Philadelphia next year.  I know ALL the lyrics by now, lol--though my rapping skills have been adversely impacted by my recent dental implant surgery, sad to say.  Another reason I'm looking forward to getting the FINAL new set of teeth in a few months!  

[DDOT]

11 hours ago, DrBee said:

Dorothy, 

I totally sympathise with Al. Lou also likes orderly progression (he's an engineer) and, though he hasn't said this, I think the uncertainty is really hard on him. (Me too, fwiw! :)) I think that's one of the reasons that many of the veterans in this community really emphasise taking things one day at a time and trying to live in the moment. As for us, we have a few decisions to make that are going to be based on hoping for the best but also trying to make the most of each day (mainly, moving house and going forward with transfer of embryos we have banked). 

I didn't realise that Cyberknife was out if they were afraid of not being able to get it all. I have a LOT to learn. I plan to call Northwestern's radiation oncology dept in the am to schedule a consult, if only to get a better understand of that side of things and see if they agree with our med. oncologist that it would delay starting our chemo/immuno treatment, since that's not something I've been hearing from other folks here. 

The fact that Al is feeling ANY difference after just the one treatment, and after 3 weeks, seems like a good sign. Especially if he wasn't really feeling bad before (besides the GERD - not to minimise that because it sounds awful. Lou's taking Pepcid as well, and just had me pick up Prevacid. We hope that these (plus probably Zofran) will keep GERD and nausea at bay until the Keytruda has time to work (fingers crossed it does!) Were the stomach spasms brought on by the Keytruda, or do you know? 

Interestingly, we haven't been warned about his resistence being way down, but he feels so crummy and fatigued anyway that he's not even tempted to go out much.  I am glad to hear Al is feeling good enough to want to go out! Cabin fever is a good problem to have in this instance! 

Aggressiveness: did they give you all a grade for Al's cancer? They didn't give us one, but the reference to it as "aggressive" makes us assume a high-ish grade. I've read that grade matters less for treatment decisions with LC than for some other cancers, but clearly we'd rather it weren't aggressive!

What did the ER tell you about the coughing up blood? Were they able to determine a cause? I do hope that's a sign things are working! I'm sorry to hear it is such a long drive for you. (Although living in the country sounds very therapeutic!) Fingers crossed and sending you many good thoughts! ❤️ May it be a good week for all of us. Our first infusion looks like it'll be the day before your second. 

Bethany 

The uncertainty of this life is hard to get your head around it. Al has always been fit, nonsmoker , ate healthy usually my cooking so I knew exactly what was in it and never drank. So this was the last thing we expected. Anyway now we are concentrating on fighting it. I have a couple of books from his sister and our DIL. He eats certain things, drinks plenty of fluid and takes stool softener, folic acid and had a B12 injection the week before the first treatment because these two drugs are thought to decrease the side effects of Keytruda. He also takes 2 Decadron, he MUST take this with food,  twice daily the day before treatment to help with the nausea. Al started taking the Compazine the day of treatment to get ahead of any nausea and took it according to directions for about 4 days. He has not needed the Zofran or Lomotil yet. I was careful about his diet the first 7 days to high protein non fried foods like yogurt as frozen, smoothies or mixed into cooked foods. Poached chicken breasts, baked potatoes and my homemade chicken vegetable soup, crackers and toast. One morning he had to have his scrambled eggs by microwave and grits with a small pat of butter. He drank some coffee and hot tea, Ensure High Protein, apple juice, red grape juice and maybe 1 Coke to also get fluid during the Nadir period around 8-10 days. After this until his next treatment, he is eating anything as long as it is healthy to rebuild for the next TX. He never vomited or had diarrhea, but he had some constipation and used SenekotS, their preference, and that led to bleeding hemorrhoids that necessitated an ER trip to check blood count and stop the bleeding. He has had a history of hemorrhoids but with his lowered platelet and WBC count, bleeding of any amount is a call to the Oncologist or ER. About 3 days after treatment, he had SEVERE stomach spasms that locked up his intestinal tract. So back to ER for the Bentyl and Pepcid. I don't know why these things peak at night and our only option is the ER. None of these are unexpected except his hemorrhoids. I think we will be better prepared after treatment this Friday.

Your husband's PDL1 high number means his tumor "should" respond well to the Keytruda. Also with Keytruda they said we might see his tumors seemed to be bigger at the 1st PET SCAN. It's called possibly, a false positive. The Keytruda makes the T cells like super cells to fight the cancer so there is inflammation, fluid , white cells and dead cancer cells so it only looks bigger in most cases. At our 2nd PET SCAN we can get a more accurate test. That is like 6 months so I hope they check Al more often also.  I want to see this vicious cancer gone. One reason for the caution about infections could be Al's age, he is 70. Our Lung Oncology Group was very adamant that he not be out in crowds, especially inside and to stay away from anyone who might be sick or visitors. They say wash your hands and wash your hands and I have the few visitors who stop to see us use the hand sanitizer. Our Dentist is a very good friend and he stopped by with food and to visit and he laughed when I had him use the sanitizer.  We have hand sanitizer all over the house and vehicles and to be careful of handling any of Al's body fluids for 3-5 days until the chemo clears. You need to tell your Onc that you are trying to get pregnant, has he donated his sperm yet, not to get too intrusive but chemo affects that also. And you need to be careful around him because of the carboplatin, I think.  No, Al's cancer is slow growing. Onc said he may have had this tumor in his lung awhile. He totally aced the lung function test, if I had not seen the PET SCAN. I would have thought they made a mistake. But then there's that large tumor on his adrenal gland. So, they also watch for TSH and Liver Profile numbers. Metastasized tumor on adrenal can cause this but so can Keytruda. 

They thought maybe he coughed, he has sinus because of the ragweed here in the country, and ruptured a small capillary but it scared us both. 😮 They gave him fluids with an antibiotic and Keflex 500. mg.TID and it resolved. Normally, the drive is not a problem, all our doctors are in the city. But in those instances it seems like it takes forever. I hope I've answered your questions but keep asking. Not knowing drives me crazy. Hope this day goes well for you both. Ask me if something comes up, nothing is trivial. And check his temperature about two or three times a day. More if it is starting up . Make sure he drinks lots of fluids today. Use the nausea medicine before he starts to get sick. Al said walking around the house and gardens helped his nausea, Maybe the fresh air? Well, good luck. Hugs and prayers for you both. 🙏

 

[DrBee]

14 hours ago, LexieCat said:

It was TERRIFIC, thanks!  One of those shows one could see over and over (with an unlimited budget, lol).  I'm actually going to see it for the third time when it comes to Philadelphia next year.  I know ALL the lyrics by now, lol--though my rapping skills have been adversely impacted by my recent dental implant surgery, sad to say.  Another reason I'm looking forward to getting the FINAL new set of teeth in a few months!  

Dental implant - owwww! I really hope it is less painful than it sounds. Blimey. Getting new teeth seems to be a VERY long process, from the few friends I know that have undergone it! When are the new ones due? 

[DrBee]

9 hours ago, DDOT said:

 

Dorothy, SO weird. For whatever reason I cannot quote your most recent, incredibly helpful post. You are like some kind of Superguide through this process!!! The shock may be something I never quite get over, though I do think that settling into a "new normal" at some point here will be healthy for both of us. 

Thank you for the heads up about the pre-treatment supplements. I will ask about a B-12 injection.  Ironically, when we got the dx I got him started taking multivitamins for the first time, but the only ones we have around the house are MY multis, so they are full of folic acid!  Decadron as well no one had mentioned to us yet; they were going to give us a primer on handling side effects when we were in for our first infusion, but that sounds too late with the Decadron. I am filing all these different names away, though I suspect soon I'll have them memorized :/.

I really appreciate your chemo cooking suggestions. Is the focus on high protein nonfried foods intended to stave off nausea, or for more general wellbeing? Lou is a picky one but most of what you suggest sounds as though it would be tolerated well even if one was experiencing nausea. I do worry about just getting enough calories in him period (though I am coming to know some good tricks along these lines). Has Al had any appetite issues? Another of ours is the drinking plenty of fluids order: Lou has always been like a camel or something and just doesn't seem to crave them like I do, so I am trying to impress upon him how important it is. And that "I don't feel like it" or "I don't like X" is not a relevant consideration anymore. If you have any tips about pushing fluids, I'd LOVE to hear them. But maybe Al is more sensible about all this than Lou is! 

Holy heck, the bleeding hemorrhoids sound HORRIBLE. But yes, part of the new normal is that so many of these things that once we would have ignored or waited to get better on their own (random bleeding, random pain, coughing up blood) now have to be a trip to the ER and/or a call to the onco team. On the one hand, horrible. On the other, definitely encourages one to live in the moment and be so grateful for every good day that we get. (And yes, I hear you about these things tending to happen at night/on weekend....why never at like 9 am Monday? Sheesh!)

I too have heard about the pseudoprogression with Keytruda. How soon will your first PET since starting treatment be? (You may have said, I apologise if I missed it.)

That is a huge bummer about the infection precautions - no wonder he is feeling stircrazy! Maybe if his WBC and platelet numbers look good after a few treatments, they'll relax that a bit? After all, Keytruda is supposed to put the immune system on steroids right? Or is the thinking that the Carbo and Alimta knock parts of it down more than the Keytruda pumps them up? 

On the preggo front: we did IVF and have embryos banked, thank goodness. We *were* told to use protection during sex, and to be careful with bodily fluids. We hadn't yet been told 3-5 days - at least it isn't all the time! 

What a huge relief that Al's is slow-growing, and that it's actually not affecting his lung function! Fantastic! I cannot even express how hard it has been to see L go from doing 40-mi bike rides with me less than  2 months ago to being totally exhausted just walking around the hospital. It's a combination of the cough (exhausting in itself, but also exacerbated by exerion, which makes him then want to avoid exertion, which means he's not keeping up his cardio fitness as much as he would be), general fatigue, and, just these last couple of weeks, some SOB as well. He felt SO sick this past weekend!  How much of that is the tumors pushing on airways, and how much is the lying around, we will hopefully start to learn soon (especially if they start shrinking). The doc did say exercise as tolerated is good and he should try to keep some up, and that sadly some of what we are describing, especially the fatigue, is pretty typical in cancer pts, especially those not yet in treatment. So the idea is we are gonna try to do a short walk each day when he is NOT coughing, and start short and try to do at least a mile or so each day and hopefully build up, unless (god forbid) he feels even worse on treatment. It is great to hear that the fresh air has seemed to help Al's nausea! We will definitely try that as well. For us, being outdoors makes LOTS of things better. 

Your generosity with your time has been totally saving my sanity, Dorothy! ❤️ you are seriously the guardian angel of this treatment combo.   (It just sucks that you have had to acquire this knowledge!)  

I've been feeling, thanks largely to you, as though I was starting to have a bit of a road map for this treatment, and we were due to start Thursday, as I think I said. Then this am, our med onc at Northwestern called and wanted to see us like two hours later, so we hied ourselves over there and.....he has the ALK+ mutation. So, whole treatment plan being changed and the Carbo/Alimta/Keytruda trifecta put back on the shelf until needed. But I want to be prepared for that whenever it comes (so unpredictable, again, whatever the stats say). And as it was our first treatment plan, and the one that allowed me to have the comfort of knowing what road we were on, I'm still following it keenly and really want to keep up on your and Al's journey. Plus, a LOT of this is relevant to anyone with Stage IV, I think, regardless of therapeutic approach, especially in terms of nutrition, managing side effects, and being ahead of/on top of complications.  I hope we can keep updating each other? Your next treatment is Friday, yes? Hoping like heck we have our Alectinib by then. If it weren't for the hoops we have to jump through with insurance, we could have had it today...but I suppose I shouldn't complain since ultimately it should be covered and the targetted therapies are SO expensive. (Well, I mean really, what about cancer is cheap? A whole other topic that would take me into tomorrow morning if I started trying to write about it now!)  Sending you both love and strength and hope. 

Bethany

[DDOT]

1 hour ago, DrBee said:

Dorothy, SO weird. For whatever reason I cannot quote your most recent, incredibly helpful post. You are like some kind of Superguide through this process!!! The shock may be something I never quite get over, though I do think that settling into a "new normal" at some point here will be healthy for both of us. 

Thank you for the heads up about the pre-treatment supplements. I will ask about a B-12 injection.  Ironically, when we got the dx I got him started taking multivitamins for the first time, but the only ones we have around the house are MY multis, so they are full of folic acid!  Decadron as well no one had mentioned to us yet; they were going to give us a primer on handling side effects when we were in for our first infusion, but that sounds too late with the Decadron. I am filing all these different names away, though I suspect soon I'll have them memorized :/.

I really appreciate your chemo cooking suggestions. Is the focus on high protein nonfried foods intended to stave off nausea, or for more general wellbeing? Lou is a picky one but most of what you suggest sounds as though it would be tolerated well even if one was experiencing nausea. I do worry about just getting enough calories in him period (though I am coming to know some good tricks along these lines). Has Al had any appetite issues? Another of ours is the drinking plenty of fluids order: Lou has always been like a camel or something and just doesn't seem to crave them like I do, so I am trying to impress upon him how important it is. And that "I don't feel like it" or "I don't like X" is not a relevant consideration anymore. If you have any tips about pushing fluids, I'd LOVE to hear them. But maybe Al is more sensible about all this than Lou is! 

Holy heck, the bleeding hemorrhoids sound HORRIBLE. But yes, part of the new normal is that so many of these things that once we would have ignored or waited to get better on their own (random bleeding, random pain, coughing up blood) now have to be a trip to the ER and/or a call to the onco team. On the one hand, horrible. On the other, definitely encourages one to live in the moment and be so grateful for every good day that we get. (And yes, I hear you about these things tending to happen at night/on weekend....why never at like 9 am Monday? Sheesh!)

I too have heard about the pseudoprogression with Keytruda. How soon will your first PET since starting treatment be? (You may have said, I apologise if I missed it.)

That is a huge bummer about the infection precautions - no wonder he is feeling stircrazy! Maybe if his WBC and platelet numbers look good after a few treatments, they'll relax that a bit? After all, Keytruda is supposed to put the immune system on steroids right? Or is the thinking that the Carbo and Alimta knock parts of it down more than the Keytruda pumps them up? 

On the preggo front: we did IVF and have embryos banked, thank goodness. We *were* told to use protection during sex, and to be careful with bodily fluids. We hadn't yet been told 3-5 days - at least it isn't all the time! 

What a huge relief that Al's is slow-growing, and that it's actually not affecting his lung function! Fantastic! I cannot even express how hard it has been to see L go from doing 40-mi bike rides with me less than  2 months ago to being totally exhausted just walking around the hospital. It's a combination of the cough (exhausting in itself, but also exacerbated by exerion, which makes him then want to avoid exertion, which means he's not keeping up his cardio fitness as much as he would be), general fatigue, and, just these last couple of weeks, some SOB as well. He felt SO sick this past weekend!  How much of that is the tumors pushing on airways, and how much is the lying around, we will hopefully start to learn soon (especially if they start shrinking). The doc did say exercise as tolerated is good and he should try to keep some up, and that sadly some of what we are describing, especially the fatigue, is pretty typical in cancer pts, especially those not yet in treatment. So the idea is we are gonna try to do a short walk each day when he is NOT coughing, and start short and try to do at least a mile or so each day and hopefully build up, unless (god forbid) he feels even worse on treatment. It is great to hear that the fresh air has seemed to help Al's nausea! We will definitely try that as well. For us, being outdoors makes LOTS of things better. 

Your generosity with your time has been totally saving my sanity, Dorothy! ❤️ you are seriously the guardian angel of this treatment combo.   (It just sucks that you have had to acquire this knowledge!)  

I've been feeling, thanks largely to you, as though I was starting to have a bit of a road map for this treatment, and we were due to start Thursday, as I think I said. Then this am, our med onc at Northwestern called and wanted to see us like two hours later, so we hied ourselves over there and.....he has the ALK+ mutation. So, whole treatment plan being changed and the Carbo/Alimta/Keytruda trifecta put back on the shelf until needed. But I want to be prepared for that whenever it comes (so unpredictable, again, whatever the stats say). And as it was our first treatment plan, and the one that allowed me to have the comfort of knowing what road we were on, I'm still following it keenly and really want to keep up on your and Al's journey. Plus, a LOT of this is relevant to anyone with Stage IV, I think, regardless of therapeutic approach, especially in terms of nutrition, managing side effects, and being ahead of/on top of complications.  I hope we can keep updating each other? Your next treatment is Friday, yes? Hoping like heck we have our Alectinib by then. If it weren't for the hoops we have to jump through with insurance, we could have had it today...but I suppose I shouldn't complain since ultimately it should be covered and the targetted therapies are SO expensive. (Well, I mean really, what about cancer is cheap? A whole other topic that would take me into tomorrow morning if I started trying to write about it now!)  Sending you both love and strength and hope. 

Bethany

Bethany, 

The shock of the DX just throws you into a tailspin. The day our main Onc Surgeon showed us the PET Scan and the lung tumor lit up, myself and our DIL who is a Registered Nurse just burst into tears. I had steeled myself to be brave, but I've been holding this guy's hand for 54 years counting H.S. and I'm not letting go now. Poor surgeon, he looked relieved when our Social Worker came in.  High protein with no fired foods helps with nausea and after NADIR helps cells start to rebuild. Al has always been a healthy eater but the tumor has his stomach pressed to one side and also against his pancreas. So when we first saw our Family Physician in April because he was having pain and sick stomach, he lost about 18 Lbs. But I started getting him to eat 6 small meals and really pushed the Boost High Protein at him. So he has gained about 12 lbs. back. With the fluid, I just keep telling him to drink so the chemo flushes out faster. My fallback line is "Drink it anyway, it's medicine" and he calls me the Warden.☺ He has to have 4 tx of the chemo Keytruda, then a PET Scan, that's 12 weeks and I'm praying this is working. The chemo/Keytruda do lower WBC and platelets and his blood test show it. Our Lung Team posts all tests results on a secure website and I can pull up the older numbers from back in April and pull them up side by side and his numbers are dropping. I don't know what the next round on Friday will do. But they keep a close check on him and if needed will give him platelets or even a blood transfusion. If he gets really low they hold the tx for a week.

It is so hard to watch them go thru this. Back in April, I thought something was wrong, his body looked so frail and it looked like he was losing muscle tone. I went out to the kitchen and cried. We have been together so long he knows me well, I try not to let him see the fear in my eyes. At times with this cancer, I fight against a panic attack. It's such an unknown. Sorry don't mean to upset you. Right now I'm sitting on the sofa and one of our grandsons came to spend the night and gave Papaw a pep talk. He leaves in a couple of weeks for college  and I think he wants to spend extra time with us before he leaves. He is a really great child.

It has to be hard on Lou to breathe because of that pressure and cough. That has to be wearing him out and I know he hates not exercising. He will let you know what his walking limit is. Walking is a good thing, I told Al when the weather is bad and cold, we'll dance in the afternoons for exercise. I just want Al to get his type A energy back.

Good news you got the test result back before he started his 1st tx. Let me know what his new plan will be. Because I want to keep up with Lou's treatment. Yes, Al's next tx is August 10 so we'll see how round 2 goes. I hope we learned a lot the 1st time that we can use this week and next week. Our Gastroenterologist called and wants to see him tomorrow to make sure everything is OK. So fingers crossed for both our husbands. I was a Pharmacy Tech for 14 years after both our boys were graduated from High School and I cannot believe the power insurance companies have concerning drugs and treatment. Well, good night. Hugs and never stop fighting this thing.

Thank you for your kind remarks and appreciation. I felt hopeless and lost during the time of all that testing. So I am just happy to help you find your way.

Dorothy

[DrBee]

23 hours ago, DDOT said:

Bethany, 

The shock of the DX just throws you into a tailspin. The day our main Onc Surgeon showed us the PET Scan and the lung tumor lit up, myself and our DIL who is a Registered Nurse just burst into tears. I had steeled myself to be brave, but I've been holding this guy's hand for 54 years counting H.S. and I'm not letting go now. Poor surgeon, he looked relieved when our Social Worker came in.  High protein with no fired foods helps with nausea and after NADIR helps cells start to rebuild. Al has always been a healthy eater but the tumor has his stomach pressed to one side and also against his pancreas. So when we first saw our Family Physician in April because he was having pain and sick stomach, he lost about 18 Lbs. But I started getting him to eat 6 small meals and really pushed the Boost High Protein at him. So he has gained about 12 lbs. back. With the fluid, I just keep telling him to drink so the chemo flushes out faster. My fallback line is "Drink it anyway, it's medicine" and he calls me the Warden.☺ He has to have 4 tx of the chemo Keytruda, then a PET Scan, that's 12 weeks and I'm praying this is working. The chemo/Keytruda do lower WBC and platelets and his blood test show it. Our Lung Team posts all tests results on a secure website and I can pull up the older numbers from back in April and pull them up side by side and his numbers are dropping. I don't know what the next round on Friday will do. But they keep a close check on him and if needed will give him platelets or even a blood transfusion. If he gets really low they hold the tx for a week.

It is so hard to watch them go thru this. Back in April, I thought something was wrong, his body looked so frail and it looked like he was losing muscle tone. I went out to the kitchen and cried. We have been together so long he knows me well, I try not to let him see the fear in my eyes. At times with this cancer, I fight against a panic attack. It's such an unknown. Sorry don't mean to upset you. Right now I'm sitting on the sofa and one of our grandsons came to spend the night and gave Papaw a pep talk. He leaves in a couple of weeks for college  and I think he wants to spend extra time with us before he leaves. He is a really great child.

It has to be hard on Lou to breathe because of that pressure and cough. That has to be wearing him out and I know he hates not exercising. He will let you know what his walking limit is. Walking is a good thing, I told Al when the weather is bad and cold, we'll dance in the afternoons for exercise. I just want Al to get his type A energy back.

Good news you got the test result back before he started his 1st tx. Let me know what his new plan will be. Because I want to keep up with Lou's treatment. Yes, Al's next tx is August 10 so we'll see how round 2 goes. I hope we learned a lot the 1st time that we can use this week and next week. Our Gastroenterologist called and wants to see him tomorrow to make sure everything is OK. So fingers crossed for both our husbands. I was a Pharmacy Tech for 14 years after both our boys were graduated from High School and I cannot believe the power insurance companies have concerning drugs and treatment. Well, good night. Hugs and never stop fighting this thing.

Thank you for your kind remarks and appreciation. I felt hopeless and lost during the time of all that testing. So I am just happy to help you find your way.

Dorothy

Oh Dorothy. I wish I could wormhole to KY and give you a big hug. So please know I am THINKING one at you! 

I wanted to offer this piece of hope regarding Al's WBC and platelet levels. When my bestie was going through chemo for BC last year, her #s got pretty low a couple of times, to the point they might have made her take a break in her infusions. But they ultimately plateaud and then started going up. She started some heavy duty immune boosting supplements right around that time so we think that might have been what did it, though we can't be sure. You probably are all over this already, but if you haven't already, you might check out some supplements with astralagus, echinacea, an immune boosting mushrooms (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4684115/). That's what she used. But the important thing is that just because his numbers have gone down does not NECCESARILY mean they will continue to. 

I like the idea of all the smaller meals. I just keep offering food that he generally likes throughout the day; even if he doesn't think he's hungry, often once I suggest something, he'll be amenable to it. He totally refuses to drink things like boost or ensure, BUT I am learning all kinds of other things that have tons of nutrients. Fortunately he adores veggies so I throw greens into and on everything! Things like miso and ramen (with extra homemade chicken broth) are also comfort food to him (his mom was Japanese) and go down easily. The fluid thing is going to be a struggle, so I am trying to think about it as creatively as possible. I may have to make a little chart or something (my friend has a really cute app on her phone that tells her to drink water by displaying a little cartoon plant that looks sadder and sadder if she gets behind in her hydration goals!). He is one of those who often responds to being ordered around by digging in his heels further, so I have to be strategic in how I get him to do stuff.

Dorothy, I SO understand about how hard it is. Our first anniversary was this past weekend, and my gift to Lou was a calendar with each month (starting this month) filled with pictures from that month in this past year…the idea being it inspires us to remember to celebrate the moments of joy every day and capture them to put into NEXT year’s calendar. But it was SO gutwrenching, looking at all the pics of things we might not get to do together in the future. Damn. 

My friend who had BC was, before that, a longtime caregiver to her partner who died at the age of 34. She has a great mantra that she got somewhere: "Dump out, love in." Meaning, if we imagine a circle with the survivor  at the center, us just outside of that center, and then everyone else radiating out from that  with their place in the circle determined by how close they are to the survivor,  then when we are interacting with someone closer to the center, we only give love. If we need to dump, we only direct that toward the outside of the circle. Does that make sense? Keeping that in mind, and really relying on my friends to let me dump/vent/be pissed off/ etc, I am finding it easier to keep it together around Lou and just love the hell out of him as best I can right now. 

Along those lines, I don't think you should ever have to apologise on this forum for being honest about how you are feeling, and how scary and sad it is. I think a panic attack is a perfectly normal response. I thank god for being able to message my two besties at any time of the day or night with anything I am thinking (we use FB messenger). One of the things I have repeatedly said is that I don't know how caregivers survive this, especially spouses who are as clearly in love with our DH's as we are with ours. But people do, and we will, whatever happens, even if sometimes that is just getting from one day to the next. 

It sounds as though you have some very loving and supportive family; that is one of the best tools we can have in approaching this project of survival, and looking past merely surviving to LIVING, I think. 

I ADORE your idea of dancing when it is too cold to walk! Also, I am a hilarious dancer and laughter has to be good medicine for us both, right? 

You are right that getting out and doing something is better than nothing, and I am trying to quell frustration and also "build in" successes by not measuring what we do now against what would have been normal a few months ago, but against the day before, and remembering that, compared to lying on the couch all day, ANY amount of walking is literally an infinite improvement! After an appt today, he wanted to go to the lakefront and just walk somewhere ("I need to see ANYTHING different", he said), and we did for like 25 mins, and at a much more leisurely pace than usual, and he tolerated it much better than he did the 3 mi hike last Friday. So we agreed if he doesn't feel worn out from it come tomorrow, we'll do another 25 mins and take it from there. I'm keeping notes on all this too - I bet you are an amazing medical secretary as well! :))

Because he has the ALK mutation, he'll be starting with targetted therapy - alectinib, to be precise - theoretically tomorrow (when the meds are due to arrive).  Yay! I cannot wait to get started! Hoping side effects won't suck too much...but, more than anything, hoping it is effective! Everything I've read sounds very promising. 

Crikey, it must feel like forever to wait for that next PET scan in 12wks. I think we get one in 8 (from the date when he starts taking the alectinib), which is still going to feel like an eternity.  Was the gastroenterologist today? Since we both seem to do a fair amount of late night posting, unsure whether "tomorrow" referred to Tues or Wed. 

Big hugs and so much thankfulness for your wisdom and positive attitude and willingness to share. Sending so many good thoughts! 

Bethany