Long discussion with the Oncologist

[Jesse L.]

Just had an extended talk with my main Oncologist and she told me that extensive testing has revealed no targetable mutations... So as with many others I am left with the standard vanilla treatment. She did however change my intended chemotherapy; I will be treated with Carboplatin instead of Cisplatin which of course will still be with Alimta as well. She stated that the differences in resolution weren't worth the extra side effects that may occur with Cisplatin. I figure these folks should know best...so I go with it.

According to her since I am still only stage 3a, I am not eligible by FDA rules for any type of immunotherapy in the mix. From what she told me that is only for those at stage 4. That and they didn't check me for PD-L1 either because that too only pertains to stage 4.

So we went on to talk about a lot of what is down there road... after my 4 courses she wants me to get CT scans on 6/21, evaluate and let me know the results by 6/23, and then in that discussion inform me of what the plan is after that. There may be radiology involved but only she stated if it does me more good than harm. But she did state that there'll be scans every 3 months for the first two years after, then scans every six months for the next two years, and if there is still nothing then it's back to annual scans.

The best I can expect I guess... Now it's just a matter of getting over the anxiety this is causing me to have. As I've stated too often before, this is hard. So very specifically hard not to let it take over my whole life. The Oncologist did tell me to just to live my life day to day...something much easier said than done I'm afraid!!🤔

[LexieCat]

Hi, Jesse,

I'm not sure what you were told is correct about immunotherapy for Stage III (and relevance of PD-L1). I'd ask about this article: https://www.mdedge.com/hematology-oncology/article/198802/lung-cancer/fda-approves-pembrolizumab-first-line-stage-iii-nsclc.

 

[Jesse L.]

Thanks for the information LexiCat...after reading the article it looks like I will speaking to my oncologist again...tomorrow. Something doesn't seem right here and I'll get to the bottom of it. She did mention added side effects with say Keytruda and not wanting to adversely affect me too much with those...especially with my lobectomy being just over a month ago (2/25). Still, I will be asking some questions for sure...

[LexieCat]

Right--there may be excellent reasons not to use immunotherapy in your case. But the reasoning that it's not used (or not approved) for Stage III doesn't appear to be accurate. Maybe there was a miscommunication, but best to find out.

And remember, second opinions are always available--that's how I got my liquid biopsy and additional molecular testing. It never hurts to have another professional weigh in.

ETA: I keep forgetting about your surgery. That might be the difference--that you are getting adjuvant therapy. No idea, but I'd still ask. 

[Jesse L.]

After further intense research (and I mean intense) I have found that it is true that the FDA did approve of immunotherapy in cases of stage 3 lung cancer but only as a first line treatment of patients not eligible for surgery or chemotherapy (?). The question mark is that this ruling was based upon a study where patients received a triplet treatment of chemotherapy with very different PD-L1 expressions. The results were in all cases definitive improvement.

So, what the oncologist told me was correct...she just didn't explain it very well. I think it is a blatant mismatch between what doctors understand about how they see life and we see life. To be the best advocate we can be for our own life we need to be on the ball with every last shred of information and research. Doctors who, lets face it, still take life for granted aren't thinking that way. They're still thinking of a "future" while they're telling us as patients to think day to day.

I will try to make the medical professionals I deal with understand this divergence in thought process. It really does mean everything in the process of treatment. I still can't believe how badly I was informed of my stage 3a when originally classed stage 1a. The first thing the doctor who said was and I quote "Sorry to tell you but you only have a one on three chance of living another five years." The last is a case in point...all I can think is what an a**! I would think that the point of being a doctor is to fight for life and not to do easily dismiss it. I'm still mad about that...what s jackhole...

[LexieCat]

Agreed--I can't imagine any doctor talking to a patient that way. And even if asked, point blank, "What are my chances?" the answer would have to be much, much longer, involved, and carefully nuanced.

Anyway, yeah, looks like it's the surgery that made the difference in your case. 

The Carbo/Alimta should be fairly tolerable. I had those two plus Keytruda without much difficulty. I suggest you keep a log of how you feel each day of each chemo cycle--that will give you an idea of how you can expect to feel the next time. For instance, I found that day four is when my fatigue would hit me like a ton of bricks and I'd wind up sleeping much of the day. A couple of days later, and the worst of that would pass. 

[Judy M2]

FWIW, my oncologist originally planned to put me on immunotherapy after chemo and radiation (I'm Stage 3b) but decided on targeted therapy when I was found to be EGFR-positive. At no time has he ever told me I have X time left. He says he has lots of tools at his disposal. This is a doctor who had traumatic injuries and almost died from being hit by a car when he was 13, so he has a very positive outlook on life--for however long that is for any of us. 

[Jesse L.]

While a good 95 percent of my treatment at the VA has been quite positive, there is still that remainder that just sticks in my craw...and apparently everyone else's too. By the way, thanks all for your support and I definitely will document my reactions to chemotherapy once it starts on 4/5. I don't mind saying that I was glad I will be going on Carboplatin rather than Cisplatin what with the more extreme side effects of the latter. That is not to say that there won't be side effects with Carboplatin, just probably less is all. 

I guess I just have to be thankful for the good points... They caught it early, cleanly removed all disease they could find through surgery, and now it's just a matter of chasing strays. And I'll be watched like a hawk for any recurrence afterwards with the oncologist and radiologist literally poised for action in case that occurs. 

I really have to watch what I say though... I mentioned that a few (meaning two) times since this all started I noted my heart racing a bit. Because I said that I now have to go for an EKG today and they want to put a heart monitor on me for thirty days starting 4/15. Supposedly they're afraid I have AFIB? Maybe perhaps the first time my heart raced is due to anxiety after being in the hospital for 72 hours following a bronchoscopy wherein it was only supposed to be a six hour in and out procedure. Somehow they managed in the process of collecting a tissue sample to cause a bleeder into my right lung so much so that I was coughing up blood for eight days afterward. And the other time occurred just a month after that right after I sat down in the recliner...for some odd reason my heart rate went nuts for just a half minute or so and then settled right back to where it should be. And nothing since... Oh well, we'll see what the Dr's say...again. 

[LexieCat]

Hey, it's good you're having those things checked out. Don't EVER edit what you say to the doctors/nurses to avoid more testing or procedures. Cancer and its treatment can affect a lot of different systems and organs in your body. Sure, it might just be anxiety. Better to find out for sure than to have you collapse from an a-fib while you're getting chemo, right? They need to know what's going on with you.

 

[Jesse L.]

OK, so I went and had my EKG and it's perfectly normal. That is good...  Also, confirmed my 30 day heart monitor starting on 4/15.

Also got a call from VA mental health and they rather insisted that I book an appointment with them, just to see where I am with all this mentally. I'll be honest it's been tough so what the hey I have an interview with a Dr. in a couple of weeks. 

Nurse administrator for chemotherapy called me as well just to see how I was doing and also gave me the rundown on the chemo infusion schedule now using Carboplatin and Alimta rather than Cisplatin and Alimta. The infusion for Carboplatin and Alimta only takes 30 minutes as compared to Cisplatin and Alimta which takes 6 hours...big difference. I'll also get to meet the Chief NP for the infusion center and from what I'm told it is standard practice that I will see him every time I go there. 

And last but not least, the nurse administrator informed me that whereas she will not personally be there for my first infusion, she will leave a gift for me with the infusion center nurses. In actuality I feel kind of embarrassed at the attention. I know folks are just doing their best to be kind, but it's sometimes really hard to appreciate it all when I really don't want to be where I'm at in the first place. Another reason this is hard...

[Tom Galli]

Jesse,

I'm not sure if I shared this with you about infusions. I can't search your post history for some reason.

Your 30 minute timeframe is really short compared to what I experienced. I do hope things go well with your chemo.

Stay the course.

Tom

[LexieCat]

When I was getting chemo, it was 10 minutes for preliminary anti-nausea infusion, flush port, 10 minutes for Alimta, flush port, 30 minutes for Carboplatin, flush port. I also had a 30-minute Keytruda infusion, which you're not getting.

I wouldn't count on being out of there in 30 minutes total. Your infusion time MIGHT be shorter if you have a lower dose due to this being adjuvant chemo. Still, I'd plan on at least an hour-hour and a half. It goes pretty fast.

[Jesse L.]

Thanks for the information all. When I talked to the nurse administrator she told me in all that I'd be at the infusion center some 3 and a half to 4 hours total. That would include blood draw, tests, all infusions, etc. I'll admit that I have some trepidations with all this, but I guess I just have to persevere and just do it. I have to take two dexamethasone pills on Easter, the day before infusion day. I'll have to watch what I eat for sure at the family get together...I don't want to blow up! This is hard...but necessary I guess...

[LexieCat]

I wouldn't worry too much about what you eat on Easter. The biggest effect most people report from dexamethasone is a certain amount of restlessness/nervous energy. I sometimes have a hard time sleeping the nights I take it. One good effect is that if you have any aches/pains, the dexamethasone might make you feel better on those days. I haven't heard of its causing stomach upset.

[Judy M2]

Dex doesn't cause stomach upset or blowing up. They put you on it to ensure you don't have an allergic reaction to the chemo drugs. In fact, after my first couple infusions I was told I didn't have to take it before and after. The infusion process is long by necessity. They tend to process the blood work pretty quickly but it's still a wait. They may hydrate you while you wait. If you get some IV Benadryl, you'll get a nice nap (my favorite part). Bring stuff to read, something to drink, maybe a snack and definitely a blanket, it can get cold in there. The port flush at the end is fairly quick. I always brought a tote bag with my stuff. You'll do just fine. 

[Jennedy]

You might want to keep a close eyes on your bowels as well. I now take a stool softener the day before as well as the next few days. I never knew that constipation can HURT SO MUCH!

[Jesse L.]

Thanks all for the infusion helpful hints...it is a huge help...

The pharmacist did tell me to take one dose of dexamethasone when I wake up and another dose at noontime on the day before infusion to avoid the drug keeping me awake all night before infusion day. We'll see if that works...I have my doubts. I've also been told that I might be awake the whole first night after infusion as well... No wonder it's crash time shortly thereafter! 

Oh, and yes I am watching like a hawk to eliminate any possibility of bowel issues. I have very vivid memories of severe constipation after I was given oxycodon quite liberally in the hospital after my lobectomy on 2/25. It probably was a span of 5 days total where I couldn't go and when I did after  a suppository treatment it was painful...I won't go into the particulars. I was in the hospital so I had to be quiet; I would have preferred to scream. Therefore...

Starting two days prior to infusion I will be on Mira lax daily as well as my usual Metamucil. And if I have to I'll take stool softeners as well. This is all in anticipation of having to take anti nausea meds at least in the first few days up to a week after infusion. I really abhor nausea😩😳😵. That was the one big reason I quit drinking completely at a very young age...I just hated the side effects!!😊😊

[TJM]

You have a great plan. Try to relax and enjoy early spring. You will do fine.

Peace

Tom

[LouT]

Jesse L 
 Stick with your plan and get Colace and/or Miralax.  I went through what you did and frankly felt like it was the end for me.  We don't want you to do that again.  Stay strong and positive.  Looking forward to hearing good things.

Lou