Update on my dad, stage IV NSCLC, and Help needed

[Lisam81]

Hi everyone! It has been a whirlwind few weeks so I'm back to update on my dad and also hoping to receive a bit more advice and/or encouragement on our latest decisions.

So my dad (64 YO) underwent his biopsy, and all testing finally. Official diagnosis - stage IV NSCLC adenocarcinoma. He has a 3-4 cm mass in his right lung pressing into the right ventricle of the heart causing Superior Vena Cava Syndrome. Mild shortness of breath, dizziness and blue veins on his chest from the SVC. Cancer has spread only to the paratracheal lymph nodes, very small amount in the right 4th rib bone, and both adrenals. Brain MRI - negative for cancer. Left lung - negative and nowhere else is showing cancer yet. Initial blood test for genetic mutations came back a few days ago - everything is NEGATIVE! Completely deflated me on that. EKG done the other day - came back abnormal but sinus rhythm normal.

Second opinion at Baptist MD Anderson went as follows: Dr there was more concerned about SVC and palliative care. Wanted to do targeted radiation only to the lung mass to shrink and relieve pressure on the right ventricle. Targeted radiation for 6 weeks, palliative only for those 6 weeks, and wouldn't begin treating the cancer until 6-8 weeks out. This would also mean that he would not be eligible for any clinical trial after the targeted radiation to the lung mass only. Dr said low volume cancer right now.

Went back to first place - Moffitt - a few days later. My concern was the Keytruda/Vorinostat clinical trial they wanted to put my dad in. Had our second visit with the thoracic oncologist there. Went very well. Dr there is not as concerned about the SVC as the dr at Baptist MD Anderson. Said it's not bad enough YET to prolong treating the cancer now, will monitor it and evaluate each time, but that he wants to start cancer treatment now rather than palliative care only first. I felt much better about the clinical trial and we opted for Moffitt and the Keytruda/Vorinostat clinical. Dad was feeling positive and ready to get this started. Moffitt set up the trial, said he still needed another CT and EKG and blood work to get ready for the trial and his first Keytruda infusion was set for today, 3/28. Yesterday the doctor called and said my dad's PDL1 came back 0!! He needed at least a 1 to be eligible for the trial. So today was out and so was this trial. Completely let my dad down and he went from optimistic to feeling defeated.

Dr said the only other option now is Carboplatin and Alimta chemo (standard of care) or a clinical trial they are doing that is Carboplatin, Alimta and a third drug called Pirfenidone (FDA approved immune-enhancing drug for lung fibrosis). Clinical trial is in Phase I so no info on anything about it. Obviously we opted for the clinical trial to receive the same treatment plus the third drug because maybe it's better?

Dr said my dad COULD get Keytruda with chemo NOW but that if he did it would disqualify him from any second line treatment clinical trials that he would be eligible for if he failed the chemo + Pirfenidone clinical trial. We decided that it might be more devastating to disqualify him from any immunotherapy second line clinical trials than to take our chances with Keytruda in first line and have it possibly fail. I know PDL1 isn't always foolproof in who responds to Keytruda as I talked to a lady who had a PDL1 of 0 and Keytruda worked great for her and then a man who had a PDL1 of 90 and Keytruda failed to work for him. He is having another CT and EKG tomorrow to get ready for this new clinical trial and then he will start the Carboplatin/Alimta/Pirfenidone clinical trial this Friday.

I can't help second guess and wonder if opting for Keytruda with chemo in the first line is the better choice or if it's not worth the chance to disqualify him from any second line immunotherapy clinical trials should he fail the first line. My dad is very discouraged with this latest treatment as obviously we'd like above standard of care and right now that's almost his only option until second line unless we did Keytruda first line and put all eggs in one basket. My dad feels this is just going to prolong a little. Dr did say treatment plan is the same but just a different order now. This dr believes as long as a person receives immunotherapy and chemo that it doesn't have to be together at the same time, but will still have the same benefits. I hope that's correct but right now we have to trust him on that. We are still waiting for the other gene mutations to come back, which won't be for a little while, but as of now every single thing is negative. Wondering what everyone's thoughts are on this and if this can still potentially help him have a positive outcome? Dr's goal is obviously to get him to the 5 plus survival mark, but it feels options are dwindling. Thank you!!!!!

[judg69]

Lisa, my vote is to move forward ASAP with the more conventional treatment at once. As stated in an earlier posting, a positive mental attitude is absolutely essential to success. My best hopes are with both you and your dad! judg69

[Lisam81 in reply to judg69]

Thanks! We are. First treatment this Friday. It's just disappointing when he finds out less than 24 hours before treatment was supposed to happen today that he didn't qualify for the immunotherapy clinical trial. We were actually on our way to Tampa when the doctor called and had to turn around and go home. He was feeling so positive about Keytruda and then it poofed.

[Davidatp]

Hi Lisa, I am a stage IIIB NSCLC Squamous cell survivor. I went through my treatments at Moffitt and have nothing but good to say about them. Right now you have arrows pointing Every which way and nothing makes much sense. I can vividly remember being in that position and all I can say is hang in there and Pray a lot. I was diagnosed in Jan 2009 and I’m still alive and kickin. Good luck and God bless.

David

[Lisam81 in reply to Davidatp]

Oh, I'm so happy you wrote!! 2009 - that's amazing! You give me such hope!! Did you do a clinical trial at Moffitt?

I feel positive that we made the right choice to stay at Moffitt and, after our second visit with the dr, I really like him a lot. Everything is a mess, you're right about that. I'm finding the beginning is a mixture of emotions and hoping right choices were made to the best of one's ability. God bless!

[Davidatp in reply to Lisam81]

Yes I did do a clinical trial at Moffitt. I’m really glad you are sticking with Moffitt. It’s a fantastic hospital. Only the best. God bless.

David

[Ncpoet]

Lisa,

I did carboplatin and Alimta in 2013 for stage 4 nsclc adenocarcinoma. The third drug must be a newer one. I then followed that with immunotherapy drugs Xalkori and then Zykadia which were new at the time. Afterwards I did a year of Alimta alone. Still in remission. I was 66 at time of my treatment. Just celebrated my 71st birthday! There is indeed life after cancer! Tell your dad to stay positive! Once I started treatment I was no longer overwhelmed. I was taking my life back.

Romans 12:12

Judy

[Denzie Moderator Volunteer]

The treatment plan from Moffet makes the most sense to me for one reason-I like the idea of shrinking that mass before radiating it. It feels the safest alternative to me.

Patients in clinical trials get the best, closest, most comprehensive follow up. And I know I’m alive today because someone somewhere participated in a clinical trial for the treatment I had. I cat thank them but please thank your dad for me.

[ynkefan08757]

Hi Lisam81

I’m sorry to hear that things aren’t going how you and your dad want them to go. I DO however want to say that I too had to do chemo and radiation first and then I was able to get into an immunotherapy clinical trial once chemo and radiation we’re done. I had my infusions for the first year and now I’m in the “scans and blood work only” phase of the trial. I’ve made it to 3 years (in January) and my tumor went from 6cms to almost undetectable. Don’t give up his ability to get into a trial later. Do the chemo and radiation and then try again for the trial. I have a good feeling that things will work out for him.

I wish you the best!

D

Stage 3 nsclc

[ElmerFudd314]

It's me again, Elmerfud 314. Except for the mass pressing on the heart it seems that my condition is very much similar to your dads. FYI to recap I had no mutations so didn't qualify for the newer drugs or immunotherapy. I had cyber knife radiation to the head for 5 days in a row then chemo every 3 weeks for 4 to 6 treatments. Chemo drugs are pemetrexed and carboplatin. Going in for chemo # 5 in 2 days. Hair mostly fell out after initial radiation. Pet scan done looks like I am responding to the treatment. (Slight decrease in initial 2 cm tumor by the esophagus.) The constipation and eating have been the main problems. Seems to be cyclical, being worse 4 to 8 days away from the chemo. Through trial and error have figured out some drugs that work for the constipation and foods I can tolerate. Contact me if you want to know the particulars. I'm not much of a book reader but the wife got me "Radical Remission" which I just started by Kelly Turner,PHD. The catch all line is "surviving cancer against all odds". Good luck !

[GMC1]

Hi Lisa,

I wrote before. From everyone on here and elsewhere, the main ingredient to success is positive thinking. Most important thing for both of you is liking and trusting your doctor. There have been times when I felt like "we" were up against a wall, not knowing which way to turn. My question to the doctor at that point is, "if this were your dad, what would you advise, or want him to do". There is usually a pause, and usually an answer.

About Keytruda, my husband has been off and on it because we moved and then changed doctors after about 4 months. The last doctor was all about chemo and only offered a couple of sessions of Keytruda.

This new doctor is continuing the same chemo, but also giving the Keytruda. I believe my husband will have 2 sessions of both and then a pet scan in May.

I also believe the new doctor will discontinue the chemo at this time, leaving the Keytruda to work its magic. Of course, the plans can change, depending on how his body reacts. He is not dealing with the chemo as well as he did with just Keytruda, but all in all, he can't really complain, nausea and sleeping for days. I try to stay on top of everything, hydration, temp, nutrition, bowels, etc. plus we have Home Health care weekly, more if need be. That helps a lot. We also have oxygen in the house if he ever needs it, and after these treatments, he does sometimes, especially sleeping. Everyone says that nightly oxygen is good for the heart. He was army for 27 years and wants to be Army Strong again. At first he was a little resistant to many of these things, feeling like it meant the end, but he has bounced back enough to know he needs to stay positive and he wants more years with me, his sweetheart of his youth. His chemo is 3 weeks on and one week off. It is, Paclitaxel and Gemcitabine hcl.

I know nothing about chemo but have never seen this combination mentioned on here. The current doc does not seem to like this chemo and I feel he will get him off as soon as possible.

More than anything, and everyone on here has told you this, stay positive.

Gloria