My dad was diagnosed with Stage IIIC NSCLC in September

[Ellen D]

Hi, my name is Ellen. My dad (77) was diagnosed with stage IIIC NSCLC in September after being taken to the hospital for a-fib. Less than a week later he had a stroke (thankfully, he’s almost fully recovered from that other than some weakness on his left side). Once he was deemed “stable” he started radiation. The radiation seemed to really do a number on him - he became incredibly weak, developed pneumonia and blood clots in his lung and ended up back in the hospital. It got to the point where the doctors said their hands were tied - to treat any one thing would negatively impact something else. So my dad opted to go home on hospice care (because he was too sick to be released otherwise). We were very clear with hospice that our goal was to give the radiation a chance to work and for my dad to get stronger so he could  start radiation. That plan seemed to work. 3 weeks later he went off hospice (yay!) and met with the oncologist. They did scans which showed no change and decided to start him on Keytruda (4 rounds - 1 every three weeks) to allow him to gain a little more strength before doing chemo. He had his first infusion 3 weeks ago (he next one is scheduled foe this coming Tuesday). He seems more much more tired and  weak again. I’m assuming this is normal?  His chief issue now, though, is extreme back/hip pain. He’s always had pain there but it’s excruciating at times now. They even had to call the paramedics earlier this week to help him get up and out of his chair. I encouraged them to call the oncologist because I read joint/hip pain is a possible side effect of Keytruda. The oncologist called in a pain killer for him which seemed to be working at first but now he’s in a lot of pain again when he coughs, which is frequently. I know this is a long post - but I guess my question is has anyone else had such a rough go and is now living comfortably - with a good quality of life? It hurts so much to see him struggle and suffer and I just want to know if there’s hope that this will all pay off for him? Given his struggles with treatment, I’m worried about chemo.  I also feel like I’m living each day waiting for the other shoe to drop. I can’t even imagine how it is for my dad and bonus mom. 
 

Thank you for taking the time to read this. I look forward to any responses/advice. 
 

Ellen

[GaryG]

Hi Ellen: Good to see you join our group. Sorry about your dad. So much to unpack in your post but judging the situation from afar , without resolving the back/hip pain your dad will not be able to benefit from radiation,  Keytruda or chemo. Those drugs have various side effects that could make the situation even worse. It seems that you need to try different pain medication or find a pain specialist for the  back/hip pain.  Another option is to talk to a hip specialist. You can also ask for medication for the cough. Even if the cough is not cured completely it could be less painful.

As for your good quality of life  it depends. If his pain is controlled and he can tolerate what ever cancer treatment he is given,  there is always  a chance. Many of us went through cancer treatment and got good results.  I wish you the best.

[Ellen D]

Thank you for reading my VERY long post and for your reply. Not necessarily what I hoped to hear but I appreciate your honesty. 

[LexieCat]

Hi, Ellen,

I had severe lower back pain right before my most recent scans/infusion (I'd already done four rounds of chemo/immunotherapy with Alimta, Keytruda, and Carboplatin--now on maintenance with Alimta and Keytruda only). I tend to doubt it was the Keytruda, since it was three weeks since the last dose. I thought it MIGHT be from another drug they are giving me for bone mets--Zometa--but we still haven't figured it out.

I could not lie on my back at all and did not know how I'd manage it for the scans. My oncologist ordered oxycodone and it worked like a charm. I wound up taking it for only a few days and when I tried stopping the Oxy, I found that the pain was completely gone.

So my point is, sometimes it's very difficult to determine the source of pain, but it's worth trying drugs to manage it--and it CAN go away on its own. You just never know--each person is so different and responds to these drugs in a very individual way. There's no way you can know for sure that what worked for one person will work for another. The good news is that it also means you can't rule anything out, just because it DIDN'T work for someone else.

Hope your dad gets some relief so he can get back to the business of treatment and recovery!

 

[Susan Cornett]

Hi Ellen - 

Has your dad's medical team scheduled his next scan? That might help locate the source of the pain, but as Lexie said, all of us react differently to different treatments. Radiation clobbered me - the fatigue was overwhelming. Just make sure his team knows what hurts, what's working, what isn't. Side effects stink but they can be managed.

Keep us posted.

[Ellen D]

Thank you, Susan. The oncologist double-checked his scan from 12/12/20 and, at least as if then, the cancer had not spread. I’m sorry you had a difficult time with radiation as well but I appreciate knowing what my dad went through is something others have experienced. Thank you for sharing. My dad has an appointment with his oncologist on Tuesday and, unless the plan is changed, he will also to get his 2nd infusion. Please send prayers or positive thoughts, vibes, etc. 

Thank you, again, to everyone who has read and/or commented. I really appreciate it. 

[LexieCat]

Sending positive vibes your way!

[Ellen D]

My dad went in for his 2nd infusion of Keytruda today and had to be transferred to the emergency room due to low oxygen levels. A CT scan showed fluid around his lung as well as an air pocket in there acting like a blood clot.  The plan, at least as of now, is for him to get a chest tube. The thing is, he just had a thoracentesis two weeks ago. Is it common for the fluid to build up that quickly again? He obviously will not have another infusion until all of this is dealt with.

[TJM]

Wow. Your post really brings back memories. I have zero advice on how to manage the wait. I doubt many do. Alcohol helped me, but that is politically incorrect now.

Best I can do is tell you it will get better, regardless of prognosis, at least it did for me.

Best of luck and hoping it is not cancer

Peace

Tom

[Ellen D]

Update on my dad: he had a partial lung collapse. A chest tube was put in but it’s still draining more than they would like (and his BP is still a little low). His blood work suggests he has an infection so now they need to find out where/what kind. Oncology stopped by his room a bit ago and said that with all he has going on he won’t be put back on Keytruda. They believe chemo is necessary to address the fluid, etc.  Of course chemo has to wait until the infection is cleared and he’s back at home and feeling better. Has this been the case for anyone else? I mean starting on immunotherapy but having to stop and go to chemo instead?  And receiving chemo after being ill?

Thank you!

[LouT]

Ellen,

Thanks for the update.  Unfortunately, side-effects and unexpected issues seem to be part of this disease.  We all have our fingers crossed for your Dad and look forward to him improving.  Many of us (after surgery) have had fluid issues and required chest tubes to relieve that pressure and prevent pneumothorax.  I can't speak specifically to an infection, but others may be able to.  I do know that some folks here have had chest tubes for more than just the few days that one would normally expect.  I hope you'll be hearing more soon.

Lou

[Steff]

Hi Ellen,

I'm sorry I am a bit late with my reply...your post resonated with me on many levels.  One of the questions you asked was: I just want to know if there’s hope that this will all pay off for him?  -my answer is - I don't know.  But I do know that without any treatment, the outcome probably isn't good.  From the past 5 years of caregiving for my mom with her original lung cancer diagnosis, a lung cancer recurrence, and now leukemia, I have had many of your same questions and concerns.

When my mom was diagnosed with her lung cancer recurrence (NSCLC), her treatment plan included Keytruda + Alimta + Carbo.  She had a rough go with it.  In August of 2017, she spent 2 weeks in the hospital with pneumonia, infection, C-Diff, and fluid on the lung.  There were times that I thought I wouldn't be taking her home.  Despite having a chest tube, fluid continued to build up and her breathing was labored.  It was very scary, but she pulled through.  Your dad can too.

During the nearly 2 years of Chemo + Keytruda (only the first 6 months with chemo, the rest with Keytruda alone) she had to take pauses between treatments because of the side effects.  If I recall correctly, her longest pause was 3 months - due to pneumonitis.  It's not uncommon to need to take pauses in cancer treatment.  In my mom's case, these pauses did not have a negative effect on her treatment outcome - she still continues to show no evidence of lung cancer.  While I understand that your dad's docs do not want to continue with Keytruda right now, if I were you, I would discuss the possibility of trying it again once he fully recovers.  None of the side effects that you are reporting necessarily points to Keytruda side effects.  His hip pain may or may not be related, especially if he had hip pain before Keytruda.  If his docs do not want to continue with Keytruda, I would request specific reasons why.  I am saying this because Keytruda can have very positive results.  Because Keytruda is a new treatment within the past 5 or so years, docs sometimes want to blame everything on it because they don't have as much experience with it as chemo.

I can tell you that my mom did have to permanently stop Keytruda due to severe side effects - after about 18 months of taking it.  She ultimately stopped because she had severe lower GI inflammation.  Since she had been NED for over 1 year, her docs decided to stop treatment and see what happens.  Thankfully, her lung cancer has stayed away and she celebrated her 5 year lung cancerversary in December 2020.

I wish I had a crystal ball to tell you what to expect with your dad.  I can say that the bad times got better with my mom and were luckily just a bump in the road.  I am hoping that this is just a bump in the road for your dad.  I'm not sure if you or other family are allowed to be with your dad while in the hospital (our hospitals are closed to visitors), but your dad really needs an advocate to make sure he is getting the he deserves and is paying for.  Some one needs to be his voice and demand top notch care.  During my mom's last hospital stay, over Christmas, she was not able to have visitors due to high COVID numbers in the community.  She was in the hospital for 3 weeks and she often had to wait over 20 minutes for a nurse to come and allow her to use the bathroom.  The excuse was they were overrun with COVID patients and short staffed on the Oncology floor.  She was taken off meds she shouldn't have been.  Without my advocacy and watching over her, she was out of her mind on Oxycontin that they were giving her for a headache!!  It took 4 days for me to make them take her off of the Oxy and give her something else for the headache.  My point is that now more than ever, we need to advocate for decent care for our loved ones.

Sorry for my long post, my point of it is to hang onto hope.  

Take care,

Steff

[LUNGevityKristin]

Did your dad have biomarker testing?  Does he have a mutation?  Thinking of you both and hope he is feeling better soon.