A Lot Going On

[Judy M.]

Have had a lot going on. Really no good news other that I'm still here and still in the fight. With so many new things going on in lung cancer treatment there's still hope. 

Opdivo stopped progression for 4 months then major progression. I'd only had my original 3 lung tumors that had been treated with SBRT, a bone met in hip, and one in adrenal. All pretty small. Now have 2 more bone Mets, in both adrenals, spot in liver, and pleural effusion which we don't yet know if it has cancer cells. 

The ablation I had on my left hip trochanter was worse than ineffective. This may (and I believe was) the result of an incompetent doctor. Increased my pain a lot, did not push back the tumor, and put me on a walker for 3 months. An expert in the field of Orthopedic surgery who just did my surgery said bone cement should not be put in the hip, it's for vertebrae. He removed as much as he could. 

Hip tumor had eaten away part of my greater trochsnter and I had a crack somewhere in that left leg. They were concerned my femur would break. Sent to an Orthopedic Surgeon who specializes in treating bone tumors at a teaching hospital in my state. He placed 2 rods and a screw in that leg and just 10 days out now can already feel the difference in my pain and ability to walk. 

Had a pleural effusion in left lung. The tumor there had progressed some. The effusion itself was very frightening because of the difficulties in breathing I experienced. Having it drained wasn't bad at all. Only slight pain and now I feel like a new woman. They drained a quart of fluid from my left lung that's now being tested for cancer cells. 

Biopsy was taken of the bone met in my hip by Orthopedic surgeon. Waiting results. This is the first time my bone met has been biopsied since my Oncologist decided to only test the adrenal tumor originally and go with bone tumor being the same. Since I've had 2 primary cancers ( breast and lung) this may not be the case. 

They are giving me 2 or 3 weeks to heal from leg surgery while deciding what to do as far as radiation and chemo next. A woman on another Lungevity forum I belong to who also has low PDL-1 and only KRAS mutation suggested Avastin. She said this had stopped the progression of her tumors once for 1 1/2 years and then again for 2 1/2 years between their trying other things. Right now simple stability looks pretty good. So I bounced this off my Oncologist APN. She said it doesn't work for everyone. I replied that as far as I know neither does anything else they have. So, we'll see. Has anyone out there had experience with Avastin? That's my question for today. 

My conclusion from all this is that having the ablation was definitely a mistake. Other than that just time to put on what I think Tom calls my battle rattle and keep fighting. Can't decide if this is round 3 or 4. Probably three. 

Judy McKay

[LexieCat]

Oh, Judy, that truly sucks.  I don't have any great words of wisdom.  I'm glad you're physically feeling a bit better after the leg surgery and draining the effusion.  And glad they are testing the heck out of everything to find something that will WORK.  Hang in there--hope you are able to rest up a bit before the next battle.

Sending hugs and warm thoughts.

Teri

[Judy M.]

Thank you, Lexie. I really put off posting this update because it sounds so negative. But perhaps the experiences I'm having will help someone. And there may be some out there who can give me some more info on Avastin. 

Judy M. 

[Steff]

uugghh, so sorry Judy

Like you said, with so many things going on related to lung cancer treatment, there is always hope.  Hang in there.  I am thinking of you.

[Tom Galli]

Judy,

You are right to feel disappointed but disappointment is not defeat.  I had NED after treatment, then the recurrence dance 4 times, and I have a good idea of how you feel. You are right to be reaching out for other treatment ideas and approaches.  Here is one:  The National Cancer Institute that designs "unique to patient" trials and treatments.  I didn't know this place existed till I attended last year's Hope Summit.  Dr. David S. Schrump who runs the lung cancer research team made an amazing presentation at the summit.  You can read about it here.

It may be time to consider bringing the Schrump's group into the picture.  If you agree, write a short summary of your cancer treatment from diagnosis to current state and address it to  jan.pappas@nih.gov

They may have ideas or approaches.  

Time to lock and load Judy.  You've got to fight to win so dig deep and muster the courage and fortitude to beat this horrid disease.

Stay the course.

Tom

[Robert Macaulay]

So I bounced this off my Oncologist APN. She said it doesn't work for everyone. I replied that as far as I know neither does anything else they have. 

Judy

Good for you in your reply.  

Bob

[BridgetO]

Hi Judy,

I'm sorry to hear your wretched cancer is giving you such a hard time. And I'm glad to hear that you're hanging in there and standing up to your onclogist. Keep it up!

Bridget O

[Judy M.]

Thanks to everyone for your encouragement and replies. Tom, went and read about this. Definitely sounds promising and I intend to check it out by sending that email. Thank you. 

Judy M

[Susan Cornett]

Sorry you didn't get more promising info but I'm hopeful that you can find a doc or docs that are willing to try new treatments.  I've got fingers and toes crossed for you in Fort Worth.

[Judy M.]

Thank you  Susan. I need for you to cross ALL those fingers and toes and keep them that way. Though I know it's difficult. I love you guys. You are always holding our in hope with me no matter how bleak things look. I've never wanted to know how long the docs think I have and none of them have ever offered the info. The reason being it's my job to pray and fight and the Lord's job to carry me through this either way and decide when He wants to bring me home. After this last PET scan my daughter who was with me at Oncologist ask that question. I said I didn't want to know although if she wanted to ask again later I didn't care if she got an answer. My Oncologist's APN who is a survivor of an aggressive breast cancer replied that how long isn't the right question. but how much I'm enjoying every day and told her I'm an outlyer. I appreciated that. A son had the same question. Fair or not this makes me feel like I'm being hastened to my grave. Between the breast and lung cancer I've been fighting cancer almost 3 years. I know family members sometimes grow weary of the battle. But for caregivers out there I do wish they hadn't ask this question. Was worse than not helpful. 

Judy M

[Tom Galli]

Judy,

This tough on you. I know. I’ve been there. There was that vast uncertainty that haunted me about my future. I wasted a lot of life pondering uncertainty trying to know how much time I had. I became undone. I know better now. I wish I could help you know that how much time doesn’t matter. What matters is what you do with the time you have. 

There are only two certainties in the human condition. We are born and we die. Everything else is variable. Enjoy the variation. Why rush to certainty!

Forget the past, make the future irrelevant, and live in the moment. Embrace the simple things around you. Watch the clouds. Look at the moon. Watch a honey bee move from flower to flower. Simple things are the most interesting and are reservoirs of joy. Find joy Judy.

Stay the course. 

Tom

[Judy M.]

LoopWell, leg is still healing good from the surgery and the fluid they drained off my left lung showed no cancer cells. That's the good news and I'm very thankful for any good news. 

Finally met new Oncologist. She wants to do 6 rounds of Carboplatin/A Taxol drug/Avastin then continue the Avastin if tumors are stable or reduced until progression. My old Oncologist wanted to test for I think it's call High Tumor Mutation and try Opdivo/Yerboy if I had it but no material left to do test. His reasoning was that the Opdivo had worked for a time and sometimes adding the Yerboy would kick start the immune system into gear again. 

I'm really not on board with her plan. She's reasoning that the Opdivo has stopped working. I'm reasoning that it did work for 4 months whereas the rounds of chemo that included the platinum chemo Cisplatin and Alimta utterly failed. So why guarantee to make my life miserable with side effects to do the old standard chemo routine that failed rather than try something new with less side effects that also might work and will leave me more quality of life possibly? But she's really arguing for her way. She's not open to anything else. Should I get a second opinion? How do I do that and how long will it take? I have a bit of time while my leg heals and I do radiation, but not too long. Also, don't have too long to decide because my cancer has become aggressive whereas it had been slow moving up until now. 

Tom, I had started getting together the material to send the email to the nih but had wanted to see what new Oncologist thought first. Do you know how long it will take them to respond and get something together? Decisions, decisions. Help me out here guys with your thoughts and feedback please. 

Judy M

 

 

[Robert Macaulay]

Take the treatment until things settle down till the next CT scan or keep asking during radiation as they take pictures once week during your treatment. You could also ask for slight reduction in the chemo dose.??? as this should be less than before if you were not getting radiation. 

Bob

[Judy M.]

Bob

Thanks for your answer. Not having the chemo right now and won't have it until after the radiation is finished as far as I know. Then she wants to do 3 rounds of Carboplatin/Taxol/Avantin and then scan. But not sure if I want to go that route. If it is working she wants to do 3 more rounds then Avastin maintenance. 

Judy M. 

[Robert Macaulay]

Judy

Looks like they have plan either way and will get you started ASAP.

Bob

[BridgetO]

Hi Judy, When I wanted a second opinion on my non-lung cancer, I went to Oregon Health Sciences University Hospital.Do you have a teaching hospital or a major cancer center anywhere near you?  If so, you could call the oncology department and see if they have a lung cancer specialist who could do a second opinion. Or, if you have a primary care doctor or pulmonologist you trust, you could ask them for help finding a second opinion doc.  Stress the time constraints. Best of luck.

Bridget

[Judy M.]

Thank you Bridget. Just had my surgery done at a University teaching hospital in our state and do have a Pulmonologist. Will speak to her. Thank you. 

Judy M. 

[Tom Galli]

Judy,

I wish I knew more about immunotherapy. 

I think Bridget’s idea has merit. I’d start with Dr. Google and search for oncology practitioners in the nearest large city near you. Most of the Google search routines have a “contact us” feature that allows you to explain. I’d compose one summary of your treatment history starting with diagnosis and list chronologically all your treatments and results. Then I’d end with “seeking new approach for treatment”. Then I’d copy and paste that summary into every practice within a reasonable distance to your home. 

Wait and evaluate answers. You can tell a lot about a practice from the answer. “Call to schedule an appointment” is a lot less responsive than actual treatment ideas. Choose one or several. 

And, you need to do the NIH contact now. Your treatment summary that you prepare for the oncologist search should be sufficient to use in the NIH email. 

Don’t wait or put this off. 

Bridget’s idea of a teaching hospital or cancer center is a good one. But be mindful that there is often a delay for appointments. 

Your radiation oncologist seems bright, innovative and willing to try new approaches. Ask him or her if they know a similar minded medical oncologist. 

Time for action Judy. 

Stay the course. 

Tom

[Judy M.]

Thanks so much for your replies. There is another Oncologist in the hospital where I'm being treated who I had considered going to after my Oncologist left. I was told I could see both of them before I made a choice. He's treating my sister-in-law who has another type of cancer and has done very well with her. Her cancer is rare and aggressive and she's had a lot of treatment but he's managed to bring down some number that is significant in her type of cancer. And she's still with us. I'm wondering if it would be a good idea to try to see him since he already had access to all my treatment history and might be able to see him quicker. Or will I run into more doctor politics as so often happens? I hate that. I've run into that twice already. I did manage to get the doctor I wanted, but they always fuss about it. Since so many of the doctors you see are referrals and you don't know them at all I think there should be less fuss if that doctor isn't a good fit and you want to choose another. And you're right Tom. I have a very good Radiology Oncologist right now. I chose him after referral to the other doctor in the practice and his messing up the Radiation on my hip. But all this is somewhat my ramblings rather than getting started on what I need to do because I feel overwhelmed. 

Right now trying to find a way to get the Radiation under my belt. The pain of lying on the metal table on the bone Mets in my leg is too great for me to lie still the required amount of time. Managed to get the 20 min. set up done yesterday on heavy drugs. Now told my first treatment will be 40 min. My Palliative Care doc is again jacking up my meds to enable me to do that. I worry about simply O. D. ING. But I suppose if I do I'm in a hospital. 

Judy M. 

[LexieCat]

Aw, man, I wish this were all simpler.  It's hard enough to make important decisions when we're healthy and feeling good--it's so not fair to have to do it when we're sick.

I wish I had something to offer (other than spell-check, lol), but the idea of seeing your SIL's oncologist kind of appeals to me.  And actually, the fact that he's her doctor and has brought her through makes him sort of a natural choice.  IOW, you already have some experience (albeit attenuated) with him, so I wouldn't think it would raise any eyebrows, no matter how the "politics" work.  I know we shouldn't ever let what other people think get in the way of what we need to do for ourselves, but I'm the same way about disliking confrontation (weird for a lawyer--but it's much easier for me to fight other people's battles than my own).

I think I'd still get that letter off to NIH--it never hurts to have multiple balls in the air.  If something promising comes along you'll be in a position to take advantage of it, but you won't be in that position unless you get that in motion.  

Sending you good vibes--I hope you're done with the painful procedures soon.  Hang in there!

 

[Judy M.]

Thanks so much Lexie. Just having you to give some understanding helps. Just called the Oncology office. They said my sister-in-law's Oncologist is booked until January and they aren't wanting to let them do that anyway. After telling me I could see both doctors and make a choice when mine left. This internal political stuff should not be happening. It's like the hospital simply wants to push so many patients into each little doctor niche no matter the fit for the patient. But anyway that's one idea tried and shot down. On to the next. What I want to try is simply what my previous Oncologist suggested, but now he's gone and this one is not on board with it. On to the nih. Will get that out today. 

Judy M. 

 

[LexieCat]

I'm sorry, I'm not completely understanding.  You said, "They said my sister-in-law's Oncologist is booked until January and they aren't wanting to let them do that anyway."  OK, I assume the first "they" is whoever you spoke with in the Onc's office.  But who are the "they" who aren't wanting to let "them" do that?  Is this a hospital or practice where all of these oncologists practice together?

I'd try taking it up the line, if I were you. The people who do the scheduling are just doing what they perceive to be what they have to do--I think you need to talk to someone with actual power. Is there a patient advocate who might be able to intervene?  A chief physician?  Would it be possible to get on a waiting list for an appointment with your sister's oncologist? Sometimes slots do open up unexpectedly when someone has to reschedule. Does your sister have an upcoming appointment?  Could you maybe arrange to be at the appointment and ask the oncologist yourself?

Sorry, just brainstorming ideas, here.  Could one of your kids maybe do some footwork on this to take some of the stress off you?  You'd be in the best position to judge whether that would be a good idea or not.  

[Judy M.]

 

Lexie

Yes, this is a hospital where all of these doctors practice together. All of my care other than having the rods put in by Orthopedic surgeon in Little Rock has been done at this hospital. And this isn't the first time I've run into this. They will eventually let you see the doctor you want but will grumble and drag feet. Looks like they've found a way to stop it this time by simply saying he's booked until January.  May try going up the ladder but getting tired. Having to fight the disease, the insurance company, and now my hospital. I may just get that email sent to nih then sit down with some chocolate chip cookies my husband is bringing home and have a good cry. Nah! "The Lord who can move mountains is better than chocolate chip cookies. Need to cry out to Him. 

Judy M. 

[LexieCat]

OK, I suggest you enlist that husband and/or your daughter or any other kids and let THEM argue with the doctors.  

And the Lord is indeed powerful, but don't underestimate those cookies!  

[Judy M.]

Sent the letter to the nih and an email to the APN that worked with my previous Oncologist and now works with this one also. She actually knows me and my illness and treatments better than any one else. Now we will see what we will see. 

Tom, I do have joy. Have had a number of good days recently in spite of healing from surgery and lung issues. I'm not like some of you. I have no desire to travel or go to concerts. Have no bucket list of things I'd like to do. And that's good because we couldn't afford those things anyway. I'm really very simple. I enjoy my quiet life in the country with my husband, having my children and grandchildren come to visit, Journaling, Bible study, drawing and painting, reading. I enjoy being able to fix dinner for my husband and clean my kitchen and do laundry. Which seemed almost impossible to my librarians when I shared that with them. Lol. I told them if they were ever unable to do those things for a time they might be surprised and enjoy them also. This disease gives you the gift of really being able to appreciate the time you do have at the same time it shortens that time possibly. Don't know that any of that matters as far as being helpful to anyone. Just felt like sharing more of where I'm at mentally and emotionally today. 

Judy M.