› Forums › General Melanoma Community › Update after an appointment with melanoma specialist
- This topic has 12 replies, 4 voices, and was last updated 8 years, 2 months ago by
Judy Steven’s wife.
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- March 2, 2017 at 2:18 am
So we saw Dr Spreafico today at PMH. They want to move Shane off the braf/mek inhibitors and onto ipi/nivo. But there are major roadblocks to getting good to that point. The first is that Shane is on 16mg of dexamethasone per day. You can’t be on steroids and immunotherapy according to the specialist (although I’ve read a cpl articles suggesting that isn’t entirely true).The problem is when they taper his steroids he gets the shakes like a Parkinson patient in his hands, horrible cramping all over his body and terrible headaches along with an inability to eat.
So she said he needs more radiation. She’s doing a consult but she was frank and said she believed he had too many tumors for gamma knife. So that he probably will need an additional 5 treatments. But because he already had 5 high dose, he will lose his short term memory permentaly.
The next roadblock is ipi and nivo are not approved as a combo in Canada. Only separately. So we’d need our provincial health care to pick up the nivo and we have to convince our insurance company to pay for ipilimumab.
The doctor was highly concerned about the aggressive quick spread of his cancer. There will have to be a washout period between the radiation and the immunotherapy so he will have to stop the braf/mek drugs before radiation. She had serious concerns about tumor growth during the washout period of upto 6 weeks as they have to wean him off the steroids.
That was my day in a nutshell.
Janis
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- March 2, 2017 at 2:20 am
To add it’s 5 WBRT treatments that they will have to do if gamma isn’t an option. -
- March 2, 2017 at 2:33 am
Hi Janis, thanks for your update. My husband also has brain mets, did WBRT in January and after tapering off steroids, he got nivo+ipi, but after three days he needed steroids again, because of brain edema, he was in bad shape and I brought him to ER. He is still on steroids (12 mg decadron) and he would have had his seconds nivo/ipi infusion today, but….we need to taper off first…….kinda scary that we don;t know if he will ever be able to do without steroids and get more immunotherapy. Sounds like the same with Shane.
I wonder how his trembling started? Steven also has some shaking in his hands going on that seems to get worse. How did it start with Shane?
I hope it all works out well for him.
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- March 2, 2017 at 1:23 pm
Shane had out of the blue tremors and stroke like symptoms in November. They’ve gotten better with the steroids but not gone. I worry they won’t be able to get him off the steroids.
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- March 2, 2017 at 6:54 am
How many does he have? My Mom had 17 treated in one day. It has more to do with the skill of the doctor and the size of the tumors.
Get another opinion. I have also hear that you can take steroids…
Losing his memory. Not a choice. He needs another option.
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- March 2, 2017 at 1:25 pm
The specialists say in Canada our protocols indicate a washout period between braf/mek and radiation to switch to ipi and nivo. So frustrating cause I know he will be off meds for weeks.
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- March 3, 2017 at 3:51 pm
Hi Janis,
So sorry for all that you and Shane are going through. I am really truly aware that you can only do what you can do up against the establishment of the medical industry. However, here is a post with links to about a zillion articles that melanoma researchers have published PROVING that you need NOT wait (as in have a 'washout' period) and should COMBINE radiation and immunotherapy….if some actual articles from Melanoma Big Dogs will help your case: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/one-more-timebetter-responses-when.html
And you are correct in that steroids can and SHOULD be used in melanoma patients who need them and have been proven NOT to diminish the response to immunotherapy. See the middle of this post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Do you think your doc would be willing to do a phone consult about Shane's case with Dr. Weber at NYU? Weber does lots of talks and presesntations for oncologists. I know he would take the call. This probably doesn't help you much. Shane is lucky to have such an advocate in you. Hang in there. Celeste
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- March 4, 2017 at 12:53 am
Hi Celeste, thank you for sharing. My Steven is currently still on 12 mg decadron per day (1st combi infusion 3 weeks ago) and they say he needs to taper off before 2nd infusion of nivo/combi. I have also heard them say that combi infusion is possible when patient is still on a certain level of steroids. I'm curious as what that level is, do you know more about that? Because I suspect that Steven might not be able to do with 0 steroids, because of so many tumors in brain . But we hope that he can get a 2nd infusion. Last ct scan showed tumors are responding to the treatments it seems
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- March 4, 2017 at 1:17 am
Judy,
As I type this response, I am looking at a picture of dear, sweet Artie in the column to the right. He is the poster child for the question, "What the hell are you waiting for?" However, as I mentioned in my post above, many times we do not have a choice when up against the wall of medical establishment. BUT….I always say the best response to docs who advise waiting until this or that…is this:
"What would YOU do…if this were you, your love, your parent, your child? Would waiting for this particular level of prednisone, this time has passed, this arbitrary ridiculous rule is met….make sense to you…when dealing with a deadly disease in YOUR loved one? A disease for which we know the outcome, if we do not treat…effectively…NOW????"
To answer your question explicitly – As indicated in the report by melanoma experts I gave a link to above…patients who need steroids should still be treated with immunotherapy….especially when it appears they are RESPONDING to it!!! There is no magic level or number or dosage for which this is not true.
I wish you and Steven my best. celeste
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- March 4, 2017 at 8:03 pm
Thank you Celeste! I will talk to oncologist about that this Monday, you are absolutely right
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- March 5, 2017 at 4:35 pm
I thought of your situation when writing today's post. It is a little tangential to your particulars…but still…the take-away point remains….You CAN take immunotherapy WiTH immunosuppressive meds and STILL gain a response!! Here it is…in case it helps your argument:
Fingers crossed for all of you. C
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- March 6, 2017 at 1:11 am
Thank you! Your blog is really interesting and loaded with info!
I found this article this morning, and in the beginning it talks about Impact of immunosuppression on efficacy
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