yaga , I would bet it’s the right one. Brent + nivo +/- ipi. I’m not even sure what my hesitations are. My con list is: 2 years, downtown (35 min drive vs 15), well tolerated until it isn’t, scary. 50% chance of ipi, neuropathy (that that’s all options, thanks Brent), unclear if lasting (most are going on to SCT)
Oh, this is such a shitty situation. I am so, so sorry. I hope you get answers that help you clarify your options so you can feel informed about making your decision. Feel free to brain dump to us any time. I am so sorry and wish the answer were clearer.
Thank you. I actually feel pretty informed, I just have no idea how I’m supposed to decide. I keep thinking this was so much easier 15 years ago, where there were no real choices. H keeps saying things like “why is this your choice?! Shouldn’t the doctors be deciding!” I have smacked him over the head with “my body, my choice” lol
I’m seriously contemplating going to see the guy I haven’t seen in 12 years (in NoVA), just to talk to. Yes, I’m using oncologists as therapists right now.
You are so close to NoVa I think you should come for a 3rd opinion. I'm biased but I know Inova has really expanded their cancer treatment options and may have some good insight for you.
Seriously, a HUGE thank you to everyone who talked to me in this thread. It really did help, even just to "talk" it out loud and "voice" some of my thoughts. I wish H were better at this, but he is all "just do what they say."
Post by badgerwrangler on Jun 9, 2019 16:28:36 GMT -5
My dad did Ipi plus one other drug for metastatic melanoma. He tolerated the combo of the two drugs for the full treatment course (which if I remember correctly was four to six doses) quite well but when they switched to one drug only, he ended up with a near fatal colitis. He was in hospital for about two months with it and was then treated with Remicade and recovered. He still has issues, his adrenal glands are shot and he has to take steroids daily and his body just seems old now. Like he has mobility issues and just seems to get hurt so easily. And he is only 63 so not old. All this to say that he has been in remission for 3 years now. Which was basically unheard of in stage 4 melanoma before immunotherapy.
I would most certainly find out if pursuing treatment plan A would disallow you from trying immunotherapy in the future. Best, best wishes for you as you navigate this in the near future.
Do you know if the people with the bad reaction to the immunotherapy had another major risk factors - like age, other general health issues, etc? Or is it totally random?
Also is it more likely to happen with immumnotherapy than with many other drugs that also list horrible side effects (even sudden death!) that are really commonplace anyway?
I'm sure you've thought of those things, but just in case I thought I'd mention them. I think it's great you are getting a third opinion, too. I maybe talking out of my ass on this but I seem to recall that research shows being treated by a doctor you like and trust actually results in better outcomes. So I think it's fine to pick a course based on what a doctor your trust recommends. I am a science and not a "woo" person but I do think there is something to be said for the mental component of all of this and you do need to feel confident and comfortable with whatever you choose.
Lastly, if you ever need anything I'm local (and especially to Hopkins) and would be happy to support you. I hope whatever you choose has as little impact on your life as possible and you are back to good quickly!
wildrice - there is very little to predict when it goes bad. The adverse events are across the board, and not related to age, stage, or anything else. (Except maybe microbiome, but that’s too new to try to do anything with)
badgerwrangler thank you for sharing. That is the exact kind of think that terrifies me. And it seems like it’s a more acceptable risk with stage IV melanoma, vs stage 1 HL, that has plenty of other options with 50-90% ORRs.
Post by orangeblossom on Jun 10, 2019 4:29:50 GMT -5
I remember you. Always remember a fellow Baltimorean. I’m so sorry you’re dealing with this.
I think a third opinion is a good choice. Two years of immunotherapy is a long time for treatment vs. 18 weeks. With both treatments being so disparate, I would seek out a third choice.
I have zero advice other than the idea of a 3rd opinion, preferably someone who knows you (like your OG oncologist) as well as bringing someone else to the appointment with you--or even asking the hospital to provide a patient advocate for your appointments. My cousin is dealing with a tough cancer diagnosis right now and she brought someone with her to all of her intro appointments to be a second set of ears, to help ask questions, to take notes, etc. She said it was incredibly helpful.
But mostly, I wanted to say I am so sorry you are dealing with this and offer you lots of support.
I’m sorry you’re in this situation, but happy you’re here and have found talking it out to help you.
I think it’s great that you’re going to get a third opinion. Don’t hesitate to get a fourth if you’re still unsettled. We often seek input from several different people for things as simple as throw pillows...it makes sense to do the same for major health decisions!
Well, I’m in to see my original guy. Cause I’m insane, I took the 9:15am appointment tomorrow. What kind of insanity inspires me to drive from Baltimore to Alexandria in morning rush hour? All because I didn’t want to miss my boss’s gong away party tomorrow afternoon (or wait longer). At least I’m not sleeping much anyway, so 6am shouldn’t be an issue lol
And the research oncology nurse should be calling me later today. I made it clear I’m not sold, but I am willing to explore it some more.
I hope to have something put together this week, so I can start treatment soon. I’m so tempted to say the waiting has been killing me, but it begs the figuratively or literally question 😂
Just to update anyone following along, I went to see my original oncologist today, and it was totally worth getting up at 6am and driving Baltimore to Alexandria in rush hour!!
He agreed with me 100% on doing established chemo vs experimental immunotherapy. I was kind of surprised bc he did his fellowship at Hopkins, knows everyone there, and I assumed he would support their plan. But he did not think it was right for me at this point. Plus, it was good to see a familiar face. I was so close to crying at the end.
We did have a few minutes at the beginning where he remembered me, but couldn’t place me 😂 And several discussions about how this happened (basically, we left one cell behind).
I feel so much better! Now to get moving on it. It shouldn’t be hard, since everything was already approved and I should have started two weeks ago. I suspect we can start as soon as next week.
Post by aprilsails on Jun 11, 2019 19:04:49 GMT -5
I’m glad you have a plan you are comfortable with moving forward and I hope it is effective quickly! Best wishes to you as you start on your treatment path.
Post by notsopicky on Jun 11, 2019 20:16:40 GMT -5
rubytue, I remember you too (sorta local, I'm in DC). I don't have anything to add, except to say that I'm sorry you're facing this illness (again) and these decisions; we're here for you.
I’m so glad that another opinion has brought you to a clear decision on how to proceed with your treatment! I hope treatment goes quickly and smoothly, and this will all soon be just a blip on your radar of a fantastic, full life!
Post by followyourarrow on Jun 13, 2019 14:48:20 GMT -5
I'm just catching up on things. I'm so sorry you're going through this again, but I'm glad you were able to get some clarity on the right decision for you. I hope the treatment goes as smoothly as possible and please reach out if you need anything.
Post by sillygoosegirl on Jun 13, 2019 15:59:46 GMT -5
+1 for I'm sorry you are dealing with this, the John Hopkins doc's recommendation sounding sketchy as hell, and I'm glad you've made a plan you feel good about with a doctor you know and trust.
Not that how I feel about your decision matters, but I feel good about your decision too.
So I’ve slept through the night without Xanax the past two nights! I think just the relief of having a plan.
Also, I’m really disappointed in Johns Hopkins. I did call them on Monday and said I wanted to discuss the trial more (before I made the decision). They HAVE NOT CALLED ME BACK!!! WTF people?! This isn’t a cold!!! And I thought YOU wanted ME for your data pool?! And that doesn’t even get into how long (3 weeks) it took to get in to see them, and the 2 weeks after that to get a recommendation. I am seriously not impressed.
In a bit of good news, we did another scan today, and nothing has changed in 2 months. So at least I haven’t lost time waiting for friggin “experts” at Hopkins. Even though we are now doing the exact treatment my guy proposed on May 3. He and I have been emailing all afternoon. And I did point out that I really appreciate how accessible and responsive he is (especially considering I can’t even get a return call from Hopkins). It’s really made me appreciate him more. Given a few things he said, I don’t think he has much (any) experience with this cocktail. But I’m ok with that. We will learn together.
Oh, and for fun, the pharmaceutical company has called me with a personal oncology nurse. I guess that’s what $100k in drugs gets you 😂
So glad you're sleeping better! I know big decisions always give me insomnia, and I can only imagine how much more intense it must be for you.
Fingers crossed everything goes very well. Did you find out if you can start next week?
I’m about 99% sure that’s the plan. We’ve discussed days of the week and location (he has 2 offices, one is closer to my house, the other is nicer and where he is more). The conversation has degraded into my MIL and her nose mold, but once we get back on topic, I’ll confirm we are talking about next Thursday.
rubytue, I'm late to this thread, but wanted to say that it's nice to see you posting here again, but I'm sorry that it's for this. I'm so glad you got the third opinion and that your anxiety about what to do is lessened.
I'm also local, so please let me know if I can do anything for you while you're on this journey.
Well, the answer was: it takes 4.5 business days to return a phone call if you are a “world class” research hospital trying to recruit subjects. It’s not like I’m dying or anything. And the best part, according to page one of the document they sent, I don’t even qualify!!! (Requires 2 treatment failures. I have 1). Now I’m debating pointing out that their lack of responsiveness is one of the reasons I’m saying no.
Well, the answer was: it takes 4.5 business days to return a phone call if you are a “world class” research hospital trying to recruit subjects. It’s not like I’m dying or anything. And the best part, according to page one of the document they sent, I don’t even qualify!!! (Requires 2 treatment failures. I have 1). Now I’m debating pointing out that their lack of responsiveness is one of the reasons I’m saying no.
This sucks that you don't even qualify and they aren't responsive. Not that you'll get to talk to someone anytime soon on the research side since they are so bad at calling back, but my friend (different issue with breast cancer) got into a study with one failure when you weren't supposed to since she met all these other criteria that they weren't able to find in most people who had multiple failures. I'm not sure if that is normal or abnormal that some of their study requirements are sometimes flexible?
I’m so Glad you have a plan you feel comfortable with.
My brother recently had a major medical trauma and was being transferred to shock trauma. I was the only one with him And my mom questioned why he was sent to shock trauma and not jhu. The doctors at the small midtown bmore hospital where he was being transferred from told me jhu is the place to be for pediatric cancer but not necessarily other things. Then a friend, MD, told me she feels that JHU focuses too much in their research too much and patient care suffers. Sounds like this rings true in your situation which I’m sorry for. Total shit