SaraB

Quick update: today we visited with Dr. Sharfman for the first time to get a 2nd opinion on things, and then had a follow-up with Dr. Hausner as well.

Good news is that (1) my wife’s symptoms have pretty much all dissipated with the use of the Dex steroid, (2) both doctors appear to be on the same page with treatment options, at least for now, and (3) we just picked up her Braftovi/Mertovi tablets and are going to begin the targeted treatment tomorrow.

Dr. S hit on the fact that the targeted therapy should also help to speed up the tapering off of the steroid, and he estimated that in about 2 months she would likely be able to switch over to immunotherapy, recommending the ipi/nivo combo (mentioning that this has more of a track record for patients with brain mets). He also felt that it’d be safe to leave the scalp lesions intact to have an external indicator, and if they begin to shrink it would also make removal an easier surgery. He felt it was fine to leave the ovarian mass as is, but he has also not seen the scans (we requested them from UMMC but they were not ready in time).

Dr. H said since my wife’s symptoms have resolved we can begin tapering the steroid tomorrow, going from 8mg twice a day to 8 and 6 for 3 days, then 6 and 6, etc. He did not suggest a timeframe for switching from the targeted therapy to immunotherapy, but I believe he threw out about 3 months as an estimate. We did not discuss which immunotherapy would follow, but the initial plan from a while back was Opdualag (pro’s: less chance of side effects; con’s: less of a proven track record being the newer option). He now also thinks that we should go ahead and have the scalp lesions removed, as well as the ovarian mass after revisiting the scans, just to be sure. Assuming we aren’t able to schedule surgery for the scalp lesions for at least a week or two, I guess we’ll get a little bit of time on targeted therapy to see how they react and then also the peace of mind to have them gone.

My wife is having an ultrasound on the ovarian mass next Friday to get a better feel for what exactly it is. She did also have bloodwork done earlier to rule out ovarian cancer.

That’s about all I can think of for now… it’s been another long day with lots of driving and waiting around. Hoping for a positive response to the targeted treatment and very minimal side effects.

Oh, one general question that I’ve seen mixed answers for: how active should my wife expect to be during this stage of treatment? I know she should generally avoid being out in the sun and the heat of the day. She wants to get back to doing her morning walks and some light bodyweight exercise, going to our daughter’s soccer games (which are in the evenings during the summer), and there’s a concert on Friday that she was hoping to still be able to attend. She’s also hoping to get back to working (from home for now) within the next month or so. I assume the answer is probably “it depends how she’s tolerating all the medication,” but any suggestions/experiences you can share would be very helpful!

Thanks, Mark!

Overall, we’ve still been very happy with the team at UMMC, and Dr. Hausner is one of the melanoma specialists listed on the AIM website (https://www.aimatmelanoma.org/melanoma-learning-center/find-a-melanoma-specialist/maryland/), along with Sharfman (who mentioned that he knows Hausner very well, btw) and Lipson. I think we’ll still seek out 2nd/3rd opinions from Sharfman and others when important treatment decisions need to be made, and I’m drafting an email to Dr. Weber now (finally!). Hopefully we find reassurance with all Dr.’s being pretty similar in their suggestions and do not feel the need to rock the boat, which I feel would be quite stressful. I should also add that we’ve been very happy with the neurosurgery and rad-onc team at UMMC, and they’re still somewhat involved in the discussion of treatment, symptoms, etc.

Hearing others experiences and making connections in the FB groups has been invaluable, in addition to all the helpful feedback here, and I can’t thank you all enough!

Thanks, Ed! I definitely answered all of the questions and maxed out the characters on the first two. Judging from the responses in the “warriors” FB group it looks like I’m not the only one having issues.

Thanks for sharing your experience! You’re the second person to suggest Dr. Weber and I think I will try emailing him today to get a 3rd opinion. My wife just took her first full dose of Braftovi/Mektovi today after a 5-day half-dose ramp up period, and we have a tele-visit with her specialist scheduled for tomorrow mainly just to check in. Having just begun this stage of treatment, I don’t know if it makes sense to make any sudden changes, but I know that immunotherapy of some sort will likely follow, it’s just a matter of figuring out what and when. Thanks again!

Thank you for replying, Judi. I don’t know what to say about the controversy regarding the steroids, but our 2nd opinion doctor did essentially confirm our first doctor’s stance that starting the Opdualag while still taking Dexamethasone (unless it was down to only about 1-1.5mg per day) would detract from its effectiveness, and at this point we can’t go back and change things anyways. I suppose we could consult another doctor… do you think it’s possible that someone would suggest we stop the Braftovi/Mektovi tablets (currently on day 4 and doing a half-dose for a week to see how she tolerates it before moving up to full dose) – which could hopefully be effective in significantly reducing her tumor burden, and is supposedly going to help with the swelling in her brain and allow her to taper off of the steroid faster?

Also confused about your “single agent” question… do you mean Opdualag, which she was originally planning to take? I’m still getting familiar with all the vernacular, but I thought Opdualag was a combo of two immunotherapy drugs – relatlimab and nivolumab?

Sorry for all the confusion, and thanks for any help you can offer!

Thanks so much for the reply, Ed! Pretty much all of what you’ve said here falls in line with what we heard from Dr. H, and hopefully my wife can get through the edema issues in the brain and this extended period of steroid use as soon as possible. We’ve heard that it just takes longer for some folks and I guess she is in that camp.

I have a request in to join the FB group “Melanoma stage 4 support group” and assume that’s the same one you’re mentioning. Will plan to post updates there as well as here. Thanks again!

Hi Celeste,

Thank you so much for your response and all of this helpful information (and the hope that it provides)! And you are correct – my wife was slated to begin with her first infusion of Opdualag this past Thursday (7/11), with her last fraction of radiation being 6/5. We were originally trying to start earlier, but she did not do well with a very aggressive taper off of the steroid, so we went back to the original taper timeline recommended by her Rad-Onc doctor, and still had symptoms from the edema in her brain and needed to go back on the steroid (currently doing 8mg of Dexamethasone twice a day and symptoms have greatly improved).

I did look through your outline of steroids w/ immunotherapy page and it looks like the studies involving Dexamethasone specifically were in cases where it given to treat side effects from immunotherapy (whereas my wife is using it for side effects of radiation… not sure if that matters?), and there was also the study involving mice, and it’s hard for me to figure out what to make of that. I guess all I can say is that this is what we were told by Dr. Hausner, though he did say (during the earlier meeting when we delayed the 1st infusion to 7/11) that it would be okay – though not ideal – to begin immunotherapy if she was only taking about 1mg of Dex and towards the end of tapering off. The only other thing I can find, though I haven’t dug super-deep, is this:

“Using dexAMETHasone may decrease the effects of nivolumab, which may make the medication less effective in treating your condition. Talk to your doctor if you have any questions or concerns. Your doctor may be able to prescribe alternatives that do not interact or may choose to postpone treatment with dexAMETHasone. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.”
Source: https://www.drugs.com/drug-interactions/dexamethasone-with-opdualag-810-0-4349-20008.html

I’m definitely glad you mention this though, as we are getting a 2nd opinion on Wednesday, and may even seek a 3rd or 4th given all of these other recommendations for amazing doctors that we’re getting. As of now, still planning to meet Dr. H on Thursday and begin the Braftov/Mertov tablets. We were told the immunotherapy may not be as effective when done after the targeted therapy (or maybe it was that the immunotherapy does better when there is a shorter window between the radiation and immunotherapy?), but it’s reassuring to hear that you have not heard this supported in the research.

Thanks again, and I will keep posting updates here.

Thanks so much, Mark! I will start looking into your recommendations. Please let me know if you have any suggestions for groups on Facebook… just starting to look and it appears there are quite a few options. Thanks again!