NCEPR: health related brain dump

[rubytue]

I know I’m not a regular, but I’m hoping some of you smart ladies can help me think through. Warning, it’s kinda heavy stuff, and it’s *not* a WWYD, bc only I can decide that. I’m just looking for questions to ask, and things to think about, etc. H is not too helpful with this stuff, I show him things and he says he only understands 1/2 the words. Also, PDQ.

15 years ago I had Hodgkin’s Lymphoma. 6 months of chemo knocked it out and I went on with life. It’s back, which is really shitty odds (0.66%). The treatment path at this point is not as clear as it would be if it was within the first 5 years. Which is why I’ve been bouncing around for over a month without any treatment (terrible for my anxiety).

My oncologist (who I really love, but if I’m honest, he is a lung cancer guy) was thinking a targeting chemo cocktail (plan A), about 18 weeks of it. Has some side effects, of course,  but isn’t too toxic, and I most likely keep my hair. I did a ton of research on it, it has great response rates, and I was behind it. (Side note, it’s also bitchass expensive, to the tune of $40k a dose, with a 30% copay=OOP max). Reading up on the side effects, it was nothing I haven’t dealt with before. I was actually schedule to start 2 weeks ago. But, given he isn’t a lymphoma guy, he wanted a second option from Johns Hopkins hematology (yay for living in Baltimore, it’s a good place to be sick lol)

the Hopkins guys didn’t like plan A, but didn’t give me a reason. He took my case to their tumor board, and I got the recommendation on Friday. And they want me to come back in to try to qualify for their immunotherapy clinical trial. The trial is every 3 weeks for 2 years!! And the thing about these immunotherapy drugs is they are really well tolerated, until they aren’t, and then it goes downhill very quickly. Things like fatal or near fatal colitis and pneumonia. With no way to predict who or why. And Hopkins didn’t have much to say when I asked what to do if I don’t qualify (there are a couple boxes that could keep me out). It’s like this or nothing, which I know isn’t right, bc there are about 6 other cocktails that could be considered. And when I asked questions like “I’ve heard that (drug) only works as long as you are getting it?” The answer was “we don’t know.” He did say my best shot at a cure was radiation, but I’ll be back in another 15 years with breast or lung cancer, if I don’t have a heart attack first (tumor is between lungs, behind heart).

So, I think where I am is I’m going to call Hopkins back in the morning and at least go down to discuss it more (and do the battery of qualification tests). But I have no idea how to make the actual decision. The scientist in me knows how useful an outlier in their subject pool could be, but... 2 years living on the edge.

[Deleted]

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.

[rubytue]

Jun 9, 2019 8:11:42 GMT -5 @angryharpy said:

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.

[joy]

Would you consider a third opinion? It feels like the first two are somewhat far apart. Maybe a third person can bridge the two and help give you more clarity?

[rubytue]

Jun 9, 2019 8:19:48 GMT -5 joy said:

Would you consider a third opinion? It feels like the first two are somewhat far apart. Maybe a third person can bridge the two and help give you more clarity?

I’m seriously thinking about that. I could go see my original oncologist, he is only an hour away. 

Most of of the other options get stronger (ie more toxic). And I’m hoping to avoid a bone marrow transplant, which is standard second line treatment (at 1-5 years).

[muffin0]

I am so sorry. My husband is considered “cured” but he still goes every year for tests. He also had it 15 years ago at this point. (edit : I’m sorry, he had non-hodgkins)

All of that to say, that I told him about this and he immediately asked “who is this dr in regards to the trial? What stake does he have in it? What does he get out of it’s success?”

Again, I am so sorry you are going through this. What are your options on a third opinion?

Please feel free to brain dump as often as you need. ((Hugs))

[seeyalater52]

I am so sorry you’re dealing with all of this. I would also opt for a 3rd opinion. The Hopkins doctor is a specialist, which is tempting, but it sounds like they’re plugging you into a trial they have going which makes me wonder if there might be other treatment options that would be a fit for you that they aren’t willing to discuss because it’s not within their trial protocol. If at all possible it might be worth trying to find another specialist and seeing what they have to say, and being up front about your desire to avoid a bone marrow transplant and so on. You’re well-informed and it is always nice when the doctors treat you like a human partner in decision-making and not as a test subject. That is important to me, and if it’s important to you it may be a factor in making a decision about where to get treatment.

[timorousbeastie]

I'm so sorry you're in this position. I also had Hodgkin's 15 years ago.

If you were to try tx A and fail to get a response, would you be able to move on to immunotherapy? Or would A exclude you from that trial? What phase trial is the immunotherapy at?

I'd probably lean towards getting a third opinion (although I know that sometimes complicates issues by giving a third, completely different opinion, rather than being a tie breaker). In the meantime, I'd probably also talk more with the Hopkins onc to hear more of what he has to say.

[rubytue]

seeyalater52, when I talked to the Dr on Friday, I did make a comment that they just want an outlier at 15 years to round out their study. He laughed and said no, yadayada. So yeah, I do think I am of particular interest.

You all have convinces me. I am definitely calling my first guy and trying to get in to see him. Neutral third party. Although only slightly neutral since he did his fellowship at JH.

[rubytue]

Jun 9, 2019 8:46:45 GMT -5 timorousbeastie said:

I'm so sorry you're in this position. I also had Hodgkin's 15 years ago.

If you were to try tx A and fail to get a response, would you be able to move on to immunotherapy? Or would A exclude you from that trial? What phase trial is the immunotherapy at?

I'd probably lean towards getting a third opinion (although I know that sometimes complicates issues by giving a third, completely different opinion, rather than being a tie breaker). In the meantime, I'd probably also talk more with the Hopkins onc to hear more of what he has to say.

Don’t let me scare you! It’s really rare, but not unheard of to relapse this late. 

Im pretty sure neither would rule out the other. I’d have to wait 6 month after failing A before the trial, but, I think if I fail A we move on to ICE/SCT.

[rubytue]

Also thank you all so much! A couple other people I’ve talked to make it sound like it’s a no brainer, and why am I conflicted about it.

[scout8]

It sounds like you have already decided, but my suggestion was going to be to get a third opinion as well. The first two are so different that I would want another one.

I'm sorry you are dealing with this.

[aurora]

I'm so sorry you're in this position. Just reading your words, it sounds like you feel more comfortable with Option A, and I think that's a very good reason to get a 3rd opinion.

If you also want more questions to ask, I think you can push back more on why JH won't give you a solid answer on why they think their trial is better than the immunotherapy. Laughing off a comment about you being a test case isn't enough.

Are you bringing a trusted friend to any of these appointments? Someone who is well educated but not quite as emotionally invested as your H? That could also help get solid answers if you have someone like that.

Good luck, and keep us posted if you feel comfortable doing so!

[rubytue]

aurora , yes, I do like option a better. But the person I’ve been talking to the most (old friend that actually works in cancer research) is such a fan on immunotherapy (the trial), that I don’t think she gets why I’m hesitant.

that said, I do wonder how much of my bias toward A is that I really like the doctor. And I don’t want to change. Which is a stupid reason, I know. 

[carmenere]

Jun 9, 2019 9:23:34 GMT -5 aurora said:

Are you bringing a trusted friend to any of these appointments? Someone who is well educated but not quite as emotionally invested as your H? That could also help get solid answers if you have someone like that.

Good luck, and keep us posted if you feel comfortable doing so!

I think this is good advice for any major decision. Is there anyone in your life you could ask? They don’t have to be a medical person.

I’m sorry you’re dealing with this, and I hope a third opinion helps to clarify the decision.

[anonymous]

I would also get a third opinion and also really get Hopkins doctor to nail down why he thinks the trial is best and to discuss all of your other options. . I would also ask if it’s a trial run by Hopkins or if they are just one site in a larger network.

I’m so sorry to hear this is back and you have been dealt this hand.

ETA is the immunotherapy car t?

[winecat]

As a scientist, gathering more data points is good, yes? So getting a 3rd, 4th or whatever opinions will help you determine the best course of treatment for *you.* You live in a place that allows you to do this which is fortunate. And you've got the education and intelligence to analyze the info. Plus all the smart women here. I hope the best choice becomes clear.

:::creepy internet hugs:::

[rubytue]

anonymous , no, not CAR-T, that’s more in the non-hodgkins world. It’s Nivolumab and Ipilimumab. Which are mostly melanoma drugs. The Ipilimumab is the scary one. Also, it’s a huge multi-site trial. 360 US sites. And to give you an idea of the odds we are dealing with, targeting 189 subjects. 

[anonymous]

Jun 9, 2019 9:51:48 GMT -5 rubytue said:

anonymous , no, not CAR-T, that’s more in the non-hodgkins world. It’s Nivolumab and Ipilimumab. Which are mostly melanoma drugs. The Ipilimumab is the scary one. Also, it’s a huge multi-site trial. 360 US sites. And to give you an idea of the odds we are dealing with, targeting 189 subjects. 

The immunotherapy regimens are having real success but I would still get third opinion myself. Again, so sorry you are facing this

[ellipses84]

I’m glad you’re going to get a 3rd opinion. It sounds basic, but I would write a pros and cons list with all the options and question your doctors about what options and missing and which pros and cons are missing. Have that generate questions for you to ask. Tell them your recommended treatments between doctors are very different and don’t be afraid to ask them to get on a conference call together. Cancer is one area where Drs are ahead of the curve in working together in this way.

Have you talked to them about what your goals are in term of life span and quality of life? They need to come up with a plan that is best for you and not base it on assumptions or generic patient X.

I’m sending internet ((Hugs)) and healing vibes your way.

[bowies]

I’m with everyone else - go see the oncologist you trust for a third opinion. He/she knows you better than this tumor board. I’m wary that they want you in this trial for their own reasons, not because it’s the best for you.

I’m so sorry you’re going through this. I’m glad you posted about it though since you can get some good advice from women who have been through the same or similar. Decisions can feel “easy” to an outsider but you’re the one who know the effects intimately. ❤️

[yaga]

Jun 9, 2019 9:51:48 GMT -5 rubytue said:

anonymous , no, not CAR-T, that’s more in the non-hodgkins world. It’s Nivolumab and Ipilimumab. Which are mostly melanoma drugs. The Ipilimumab is the scary one. Also, it’s a huge multi-site trial. 360 US sites. And to give you an idea of the odds we are dealing with, targeting 189 subjects. 

If it's that big of a study, I would say it's maybe unlikely that your specific MD at JH has a very vested interest in this study. I would also trust the opinion of their tumor board for treatment recommendations.

You can look up the study on clinicaltrials.gov and see who the sponsor and principal investigator are. Each site will have their own PI, as well, but if s/he is the lead PI, I could see having some skepticism. However I think I would weigh the tumor board recommendation fairly heavily.

I work at a well known cancer hospital (in clinical trials) and my thought process is always to go with the doctor with the most specialization. I've seen medical teams discuss each patient in depth in terms of tumor type, mutations, previous treatment, etc.

I also get the hesitation with the ipi/nivo combo. I'm really sorry you're going through this.

[mbcdefg]

Hugs to you. I wish you the very best.

[mrslefty]

My husband just finished a year of immunotherapy for metastatic melanoma (and currently has NED so YAY) but it seems like the doctors have to scare you about immunotherapy beforehand. His doctor really talked about how scary immunotherapy can be and my husband almost refused to do it because he was certain it would kill him. Once he agreed the doc was like oh yeah immunotherapy is really really well tolerated. My husband had a rash and a scratchy voice the first few rounds but those went away.
So I would talk to the John Hopkins guy more deeply about his decision.

[rubytue]

Jun 9, 2019 11:22:47 GMT -5 mrslefty said:

My husband just finished a year of immunotherapy for metastatic melanoma (and currently has NED so YAY) but it seems like the doctors have to scare you about immunotherapy beforehand. His doctor really talked about how scary immunotherapy can be and my husband almost refused to do it because he was certain it would kill him. Once he agreed the doc was like oh yeah immunotherapy is really really well tolerated. My husband had a rash and a scratchy voice the first few rounds but those went away.
So I would talk to the John Hopkins guy more deeply about his decision.

Ipilimumab? That’s the treatment drug (Nivolumab is the control). And it is very well tolerated, until it isn’t. And when it goes bad, it goes really bad quickly. 

Totally fascinating tangent, apparently there are indications gut flora effect both its efficacy and the likelihood of high grade adverse events. 

[rubytue]

Jun 9, 2019 9:57:33 GMT -5 anonymous said:

Jun 9, 2019 9:51:48 GMT -5 rubytue said:

anonymous , no, not CAR-T, that’s more in the non-hodgkins world. It’s Nivolumab and Ipilimumab. Which are mostly melanoma drugs. The Ipilimumab is the scary one. Also, it’s a huge multi-site trial. 360 US sites. And to give you an idea of the odds we are dealing with, targeting 189 subjects. 

The immunotherapy regimens are having real success but I would still get third opinion myself. Again, so sorry you are facing this

These are the types of comments I keep getting from IRL people, which then make me feel like I shouldn’t be so conflicted about it. Yes, there are amazing promises in immunotherapy, but it can also really whack you up. 

[mrslefty]

Jun 9, 2019 11:47:54 GMT -5 rubytue said:

Jun 9, 2019 11:22:47 GMT -5 mrslefty said:

My husband just finished a year of immunotherapy for metastatic melanoma (and currently has NED so YAY) but it seems like the doctors have to scare you about immunotherapy beforehand. His doctor really talked about how scary immunotherapy can be and my husband almost refused to do it because he was certain it would kill him. Once he agreed the doc was like oh yeah immunotherapy is really really well tolerated. My husband had a rash and a scratchy voice the first few rounds but those went away.
So I would talk to the John Hopkins guy more deeply about his decision.

Ipilimumab? That’s the treatment drug (Nivolumab is the control). And it is very well tolerated, until it isn’t. And when it goes bad, it goes really bad quickly. 

Totally fascinating tangent, apparently there are indications gut flora effect both its efficacy and the likelihood of high grade adverse events. 

He was on pembrolizumab (keytruda). I think there's another Seattle gbcner on Opdivo and yervoy, I'll ask her if she wants to voice anything.

[rubytue]

mrslefty, they are also looking at keytruda fior Hodgkin’s. Basically all the checkpoint inhibitors. But that’s not an option here. And yay! For NED! I hope it holds 😊

[rubytue]

Jun 9, 2019 11:18:00 GMT -5 yaga said:

Jun 9, 2019 9:51:48 GMT -5 rubytue said:

anonymous , no, not CAR-T, that’s more in the non-hodgkins world. It’s Nivolumab and Ipilimumab. Which are mostly melanoma drugs. The Ipilimumab is the scary one. Also, it’s a huge multi-site trial. 360 US sites. And to give you an idea of the odds we are dealing with, targeting 189 subjects. 

If it's that big of a study, I would say it's maybe unlikely that your specific MD at JH has a very vested interest in this study. I would also trust the opinion of their tumor board for treatment recommendations.

You can look up the study on clinicaltrials.gov and see who the sponsor and principal investigator are. Each site will have their own PI, as well, but if s/he is the lead PI, I could see having some skepticism. However I think I would weigh the tumor board recommendation fairly heavily.

I work at a well known cancer hospital (in clinical trials) and my thought process is always to go with the doctor with the most specialization. I've seen medical teams discuss each patient in depth in terms of tumor type, mutations, previous treatment, etc.

I also get the hesitation with the ipi/nivo combo. I'm really sorry you're going through this.

So, probably the best person is my oncologist’s ex wife. Who was at JH, but is no longer practicing. And he tried to consult her, but she gave a very ex answer. I could feel the eye rolls through the email. But the hodgkins expert (ex wife’s replacement) is running the trial for the JH site, and most of the rest are non-hodgkins folks. There are more NHL, so more folks focusing on it. But it was a hodgkins specific tumor board, apparently with one of the guys who writes the NCCN guidelines.  So I think they know what they are talking about. And I know they rereviewed my slides with their lymphoma pathologist. 

[yaga]

Jun 9, 2019 12:10:59 GMT -5 rubytue said:

Jun 9, 2019 11:18:00 GMT -5 yaga said:

If it's that big of a study, I would say it's maybe unlikely that your specific MD at JH has a very vested interest in this study. I would also trust the opinion of their tumor board for treatment recommendations.

You can look up the study on clinicaltrials.gov and see who the sponsor and principal investigator are. Each site will have their own PI, as well, but if s/he is the lead PI, I could see having some skepticism. However I think I would weigh the tumor board recommendation fairly heavily.

I work at a well known cancer hospital (in clinical trials) and my thought process is always to go with the doctor with the most specialization. I've seen medical teams discuss each patient in depth in terms of tumor type, mutations, previous treatment, etc.

I also get the hesitation with the ipi/nivo combo. I'm really sorry you're going through this.

So, probably the best person is my oncologist’s ex wife. Who was at JH, but is no longer practicing. And he tried to consult her, but she gave a very ex answer. I could feel the eye rolls through the email. But the hodgkins expert (ex wife’s replacement) is running the trial for the JH site, and most of the rest are non-hodgkins folks. There are more NHL, so more folks focusing on it. But it was a hodgkins specific tumor board, apparently with one of the guys who writes the NCCN guidelines.  So I think they know what they are talking about. And I know they rereviewed my slides with their lymphoma pathologist. 

If it's the study I found (I'm literally sitting in a hospital bed right now, I have nothing but time), the main PI is from NYU. These ECOG/Alliance/NCI studies are something I'm very familiar with if you'd like to chat about any of your hesitations.