Michele

Michele, So far no luck figuring out who sent those people. Sooner or later it will show up. Lees cancer is I guess so far advanced that they are only doing chemo with him. Do not know about shrinkage yet. It is on my list of ??? for Dr on Monday. Actually weaker had an appt today with a colon & rectal surgeon. Seems he has a rectal fissure and it is quite painful. They really could not do a complete exam. Sent us home with more scripts and he is to return in 3 weeks or earlier if it worsens. Worse case they put him in hospital and knock him out to do a complete exam. They kept asking us about constipation. I told them the problem was diarrhea for the last 3 months before he was diagnosed with cancer. So even diarrhea can cause fissures and chemo makes it worse. We live in Southfield MI.
I hope by chilling this weekend you do not have a revolving door for visitors. I just want one day not to do anything. One day at a time one step at a time....... I bet Tom would know why they did both sides. for the tattoo.
Take care,
Peg

Peg,
I'm also sorry to hear of the advance. Some would say no lung cancer is curable. In fact, it has such a high probability of recurrence we use the term NED (no evidence of disease) rather than cure. I hope his new treatment routine contains the cancer.
Stay the course.
Tom

Michele, I pray you get 3 complete weeks to regroup. There never seems to be that time between other Dr. appt and all the other stuff that comes up. Today I had GoDocsGo here for what was supposed to be a home evaluation to see what someone can do to help him. I was not comfortable with them and they wanted me to sign ppwk before they even got started. I have done a google search on them and they have some pretty crappy ratings. One person tells me one thing and another has a different story I am confused enough and do not need this. They could not even tell me what DR signed the order which really had the red flags flying. I had talked to our primary care Dr. yesterday and he was not even aware of this. So much for communication. He did advise me NOT to sign anything. There are SOOOOOO many scams out there. 
i pray your husband is settling down. I pray for God to give you the strength you need.
 
Peg

Peg I'm so sorry your family is giving u hard time.they should be there for you! I'm also feel bad that your husband is more fatigued. I'm hoping you are OK! Its hard its only our first round series and it already kicked him in the butt.off for 3 weeks could only imagine what's ahead. I will keep praying for Lee along with mine.

Hi Peg thank you for asking. The first 2 days of chemo have been long days.we have to drive hour and 20 minutes to get there due to having to go to the VA yesterday he came home and went straight to bed he was so tired. Today is 3 rd  day we will be leaving in a hour .he is glad its the last day. They are giving him cisplatin and etoposide.so far he is doing alright except for fatigue and getting constipated so I have to get prune juice. I guess this weekend side effects jump in ;hopefully he doesn't get them.he was told to stop taking blood pressure meds Cuz it dropped to 85/44 so they had to give fluids before chemo yesterday. I appreciate your concern and I will update  his progress thank you so much.  PS. How is your husband doing?  Sincerely Michele.

Hi Peg thank you for asking. The first 2 days of chemo have been long days.we have to drive hour and 20 minutes to get there due to having to go to the VA yesterday he came home and went straight to bed he was so tired. Today is 3 rd  day we will be leaving in a hour .he is glad its the last day. They are giving him cisplatin and etoposide.so far he is doing alright except for fatigue and getting constipated so I have to get prune juice. I guess this weekend side effects jump in ;hopefully he doesn't get them.he was told to stop taking blood pressure meds Cuz it dropped to 85/44 so they had to give fluids before chemo yesterday. I appreciate your concern and I will update  his progress thank you so much.  PS. How is your husband doing?  Sincerely Michele.

Michele, Just checking in to see how your week is going.... Let us know when you get the chance.
 
Peg

Peg I'm sorry to hear his is advanced. I will pray for him! Thank you for all info. Talk to u soon.

Michele, Lee is advanced Stage IV small cell metastasized to liver.They tell us not curable BUT containable. The objective is to kill and shrink tumors. They told us to get our ducks in a row. We have already told DR when it comes to quality of life we will decide what is best for him. They gave him 6 weeks w/o treatment. Nothing is guaranteed. Right now I take each day it comes. He does continue to deteriorate (weakness). He lost ALOT of muscle & fat. We had a trip to ER this morning. Rectal bleeding. Has another Dr appt for that on Thursday. They say hemorrhoids BUT I have never seen so much blood from that. Just another bump in the road.
had a new set of wheels delivered for him today. Walker. It helps alot even getting into and out of his recliner.
You have a good list of questions started for tomorrow. USE THEM ALL!  Keep us posted! Hugs & prayers.
Peg
 

My friends husband was diagnosed at age 65. He lived for 7.5 years after chemo, radiation and PCI (prophylactic cranial irradiation). He died of causes not related to his cancer or treatment.


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Hi Bridget I'm so glad you are Ned. I too am Ned .I had non small Aden 7months ago had vats surgery lower lobe.its just so ironic that now its my husband turn but his is so much worse.not only that my brother has stage 4 non small lung cancer. His level on pain is 10 .I was so happy the last 6 months being Ned but now I'm right back in the world of cancer.I will stay the course! Thank you for your note it does help.

Me again. My post got sent before I was done with it. I was saying that my partner went with me to the first chemo to see how I would do with it and what support I would need. I had side effects, including nausea, but fortunately not right after my chemo session, so I was able to drive myself there and back  for all the rest of my chemo and radiation. The nurses at the infusion room were nice, and the radiation center staff, who I saw 5 days a week, were even better! Very supportive and helpful. 
I am now NED (no evidence of disease, in case  you haven't run into that term yet) on 3 separate cancers. My lung cancer was discovered very early on a routine CT that I had to wach for metastases from my other cancer. On that one, the prognosis was not good, but statistics are just generalities, and each of us is an individual, so here I am feeling good today after 6 years! 
I believe in hope and living for today. I wish you and your husband all the best.
Bridget

Hi Michele,  My lung cancer was non-small cell and early stage, so  I didn't have to have chemo or radiation. I did have concurrent chemo and radiation, plus some additional chemo, a few years ago for a non-lung cancer that was advanced and aggressive. My chemo experiences may not be the same as your husband's, but probably some similarities. Pegi's advice about what to take and what to expect is excellent. My partner went with me to the first chemo to see how I

Michele of course the weekend is here and any questions you may have for Monday cannot get answered. Pack him a small bag. Book, computer, tablet, maybe some Gatorade, some favorite munchies. I know we walked in with no basic knowledge of what was to happen. Pretty scary. I made sure I fed him before we went..Our cancer center does supply munchies and water and warm blankets if needed. They are going to do a blood test first. Then if prescribed they will give him drugs to help prevent nausea and then comes the chemo. 1st day is always longest. Next 2 days are shorter. Our tech was awesome and she answered every question I had written down. I do not go there without my notebook. My husband always reminds me if I forget. Do not be afraid to ask for printouts for the drugs and other procedures.You have the weekend write down all those questions.
Unfortunately I have files for everything going on. It also helps you to keep a journal of this journey. the journal will also help you vent. I am not working right now and I cannot imagine having to work and do this also. Lee collapsed @ work and that sent us to ER and that was the start of our journey. This hit him hard and fast and thru it all he simply amazes me.
I pray your husband has no nausea which for us has been a Godsend. Hard enough dealing with all the other stuff without that too.
 
P.S. You are human those nerves are gonna be pushed to the limit. I have yelled and screamed at some family members for some of the stupid stuff they have pulled. Lee and I are a team and you either get behind us or get left in the dust. I no longer have time for any kind of drama.
Hugs & prayers!!! God is always working even when we think he's not there.

Michele, like you I am now on this journey with my husband. We have hope but we are also realists. Right now I am grateful for everyday past 6 weeks. 2 rounds of chemo down and once the initial shock wears off you take one step at a time one day at a time. There are so may UNKNOWNS like waiting for test results. Thank God the hospital has a place where we can get results quicker than the dr's. Do I have days where I am overwhelmed? Oh heck yes! Am I worn out? YES! Did I stop by my primary care Dr to get a B12 shot? YES! And I feel much better after 3 days. We are in this fight together and we stand united in front of family even when they disagree with us. It is our path and our choice not theirs.
 
Peg

Michele,
Agree with Denzie, completely.
Stay the course.
Tom

This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem.

Do ask for a referral for an evaluation with the oncology nutritionist.

Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then.


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Hello All. Thank all of you for your wonderful comments. I just want you to know that today is my 4 year survior mark for me. I feel better than ever, have had total hip replacements in both hips, and too top it all off they now have given me hearing aids. LOL. Like I am gonna pay attention to things. They are great for church in hearing the pastor or watching tv. Other than that they live on my dresser. I hope you all remember in the beginning they said maybe 2 weeks to 2 months for me. Well that shows the treatments have gotten better and the Lord still works for all of us. Dont let your mind take you down, or lack of eating, drinking water, and or statistics. I had fun today and I know that I will tomorrow.
God Bless
Don
My picture and history was removed by my thinking I knew how to use a computer. Will replace it later.

Saw Radiology Oncologist for follow up yesterday. Got specifics on my S.B.R.T. Am writing this because my treatment plan has been rather unique. Hoping if it works out it will help someone down the road. Tom suggested a blog, but have no idea how to do that. So here is what I've done on advice of Med. Oncologist: Had 5 fractions of 1000-1500 centigrays each on all three of my lung tumors at twice a week over 21/2 weeks for a total of 4500-5000 centigrays. S.B.R.T. is normally done daily or every other day. I'm thinking they gave me a couple of days between because of Rad. On. concern about toxicity since I had received the standard radiation treatment of 33 fractions for another cancer less than a year earlier. Physicist assured me the fractions were too high for the cancer to develop resistance in that length of time. Have had no adverse reactions from the S.B.R.T. Now having Cisplatin/Alimta chemo every 3 weeks for 4 rounds. Just completed 2nd round. The difference in my treatment is that I was diagnosed with stage IV because of tumors in both lungs. That would normally mean 1st line chemo. Med. On. gave me the choice to try this for a cure and I took it. We will see when scans come up how it works out. Reason for the option was scans showed no spread of cancer outside my lungs.
On another note ( and this one is a bit embarrassing) have had constant battle with constipation for years and normally take full dose of Miralax daily. The chemo seems to have made this an even greater problem. Was told I could take Sennekot besides the Miralax. No good. Didn't work. Ask for help and Oncology nurse told me to try Prunelax. Had never heard of it, but it works. Hope this helps someone else. Enough misery with cancer treatment for us all without having to deal with this one.
Judy M
 
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Michele,
Here is another pathway to hope.  
Stay the course.
Tom

Michele,
I've know many SCLC survivors who've been successfully treated.  Unfortunately, like any form of lung cancer, I know of those with small cell who achieved NED (no evidence of disease) but experienced a recurrence.  And, I know of those whose treatment did not have an effect.  Most importantly, all of my small cell acquaintances were before the emergence of new treatment method of immunotherapy.  You can read about it here and here.
We don't use the word cure in the cancer community.  Regardless of type of lung cancer, it recurs frequently.  I still see my oncologist two times per year and I've lived more than 13 years after diagnosis.  So, extended life is achievable but no one knows how long the extension will be for any lung cancer patient.  
Stay the course.
Tom
 

Michele I am glad to hear that your husbands SCLC is said to be Limited. That is great news.
I never had SCLC but I have friends that have had it.  My friend Janet was treated with chemo and radiation
over 15 years ago and is still doing well.  I hope your husband also responds well.
 
Donna G

Ines,
I hate lung cancer also, with a passion!  
Is [whole] brain radiation as effective as gamma knife in dealing with metastasis to the brain?  I don't know.  I know people who have had each and both worked but there is always a chance of recurrence, so you need to keep that in mind.  If it were me, I'd have gamma knife because it targets less brain tissue and with my advanced age, I need every bit of brain I have....
Stay the course.
Tom

Ines, 
Very sorry I missed your April 9th posts. So, let me first address your concerns mentioned on that day. 
We have doctors who treat people like things also. I think that is an international medical trait. My wife was my protector and protester. She is normally calm and reserved but that can change in an instant. When she witnessed bad treatment, she would say, in a very loud voice, "don't treat my husband like that!"  And, often it would work. To change this type of treatment, someone needs to speak up, loudly!
We are your support group if you do not have one. And you might want to start a cancer support group in your treatment center. During his infusion time, ask the family members in the next chair if they want to talk about treatment or cancer. Use the Lung Cancer 101 material at Lungevity.org to educate and answer questions. Compare notes. Side effects ar often a good thing to talk about and share ideas for making them less troubling. 
I read about the disease but didn't want to talk about it either, especially to the doctors. I was frightened. My wife did my talking. She asked questions and debated treatment alternatives with my doctors. So talk for your husband. 
I had a single large tumor in my bronchus. After pre-surgical radiation and chemo, my right lung was removed. But, I had many complications from this surgery and during that period, the disease invaded my left lung. Then there was nothing but chemo to treat me. Scans during treatment showed tumors getting lager while others got smaller. I was told chemo continues to work for several months after my last infusion. So I think your report of some regression and some remaining the same is common. Wait for his post chemo scan to assess results. 
As for the small nodules in his lung, ask if they were present on his diagnostic scan. If they have not changed, it is possible they are not cancer. Lung nodules form for many reasons. 
Great news about the adrenal gland report. 
Keep us up to date on his treatment and of course send us your questions. 
Stay the course. 
Tom

Ines,
Welcome here.
I might need some information before addressing the constant cough.  Is your husband currently having radiation treatment for his tumors in his lung or lungs?  If he is, that could be the source of his constant cough.  You might also identify the type of chemotherapy (name of the drugs) your husband is receiving.  That could also give me some insight into his cough.  Regardless, regression from his treatment is a very good indicator.
Will it ever stop?  If you mean treatment, perhaps, but lung cancer is persistent.  I had a total of 5 curative treatments to stop my NSCLC, so 4 recurrences after treatments.  A lung cancer patient needs to prepare for the long game in treatment, unfortunately.  Here is something I wrote sometime ago about lung cancer persistence.    
How do you help him?  I know you are doing all the caregiver things so I'll assume you mean over and above taking care of him during treatment.  My wife really worked on my attitude. She was very positive about treatment outcomes even when I experienced a setback.  That assistance was very important to me.  You might also encourage his attendance at a lung cancer support group.  These groups of survivors and sometimes medical professionals are often associated with treatment centers and can essential provide support and assistance.  You should also go with him to these sessions.  You might encourage him to join this site.  Many of us here are long time survivors and it is sometimes helpful reading about our treatment experience.  A good place to start is the forum section INTRODUCE YOURSELF.  He might also want to read about those with SCLC and that forum is the SCLC GROUP.
What to expect of it all?  I can only answer for me.  I had three devastating years of near constant treatment from 2004 through 2007 but in February, I celebrated 13 years of life after diagnosis.  I suggest this expectation:  if I can live, so can your husband.
Stay the course.
Tom