› Forums › General Melanoma Community › Bone Metastases – radiation w/ WBR??
- This topic has 12 replies, 6 voices, and was last updated 6 years, 2 months ago by
dmarie.
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- February 10, 2018 at 12:56 pm
I posted last week, asking for advice and/or information about brain radiation for my husband, as the Taf/Mek seems to have stopped working (3-5 months in – not sure when it stopped). It was decided that WBR was his only choice, as there was evidence of possible LMD forming (a dark spot of cells clustering near the surface, which weren't yet a "lesion" but it looked to the Rad. Onc. that it is suspicious enough that only WBR would eliminate it. And, of courese, that there are many mets scattered throughout the brain. So there is that.
Thursday he went for body CTs, to see where he is with other tumors – liver, lungs, lymph, and femur. Yesterday afternoon his medical oncologist (mel specialist) called. There is progression in several areas, among them the upper thigh bone and several new ones in his ribs. This would explain the pain he has been having in his sides and back.
We will meet with med onc in 10 days to discuss next treatment plan – systemic treatment with immunotherapy was touched on, but not sure what specifically would be used. Does anyone have any insight?
The dr. was going to discuss the results with the rad. onc. to start the conversation about radiation for the bone mets, since Brian will be at the hospital for radiation daily for 2 weeks, starting Monday. Can anyone give me any insight on having radiation on multiple sites simultaneously?
And one last question – at our last visit the mel specialist mentioned Zometa (Reclast) for bone mets, but he didn't mention it yesterday in our phone call. Is this something that should start ASAP? Or should I wait until the appointment in 10 days? (I feel that things are ramping up and I want to advocate for him to get whatever he can to stop / slow this down, but I am not sure how hard to push).
Thank you. I greatly appreciate your help and guidance. Diane
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- February 10, 2018 at 3:50 pm
I don't think Zometa will do anything to stop progression, it is used to try and help with the bone mets – support the bone strength. Given IV. Certainlly you could get that done sooner but it is supportive therapy only and isn't going to make any drastic change.
The main side effect with radiation is fatigue. There are certainly people who have done multiple sites. Radiation on the bone mets can help with the pain but isn't generally considered curative. It would be nice to get some of the immunotherapy agents on board at the same time.
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- February 10, 2018 at 5:42 pm
Thankjs. I believe the plan is to start systemic immunotherapy following the WBRT. We meet with the mel specialist on the 20th (10 days) and will discuss detailed next steps.
Good to know more about Zometa. Thank you. It was mentioned in November, but only in passing. I will look into it further.
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- February 10, 2018 at 8:02 pm
Your husband need immunotherapy stat!!! There is no need for further delay!!! In fact it is best that immunotherapy be given WITH radiation…whether we are talking in the body or the brain. I probably gave you some of these before but (there are links within each):
See more below….
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- February 10, 2018 at 8:13 pm
To continue….
The immunotherapy with the best response rates going is the ipi/nivo combo. Ipi alone has about a 15% response rate. Anti-PD-1 (There are 2 products: Nivolumab/Opdivo and Pembrolizumab/Keytruda.) alone has about a 40% response rate. Together rates climb to a 50% + response rate. Here is a basic primer I put together regarding melanoma treatment generally:
And here is a post I just put up about LMD:
If the docs really think your husband is dealing with LMD then a spinal tap, in order to evaluate the cerebrospinal fluid, is usually done. The finding of melanoma cells, and the quantity, in that fluid would be something important to know when deciding his care going forward. If that has not been done, it is something I would want my docs to do for me.
Zometa is for supportive care. It will not make any difference to the melanoma directly.
Clearly, you have to do what you think is best. However, I would fight like a crazy person to have systemic therapy NOW!!! 10 days to have ANOTHER discussion gives melanoma time. We do not need to give melanoma more time. A couple of years ago it was thought that giving immunotherapy WITH radiation to the brain could cause side effects like swelling and necrosis. We have learned that while those are potential side effects of radiation to the brain…immunotherapy with radiation does NOT make it worse or more likely!!!! Ratties have done the time and work to prove this. Many of the articles I've posted speak to this. And…quite to the contrary….we have learned that giving immunotherapy WITH radiation boosts the effectiveness…greater than the radiation or the immunotherapy alone!!!
Hang in there. Hope this helps. Celeste
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- February 10, 2018 at 8:34 pm
Thank you (again!) I did cite the findings that you noted when I spoke with both docs last week. I was advocating for immunotherapy in concert with radiation, even if it was WBR. The mel specialist was agreeable but the radiation onc was not. He felt very strongly about it too.
The rad. onc is not convinced it is LMD, but he said that there is a serious concern that it could become LMD. (A radiation pathologist (??) read the scans and thinks LMD – of course without a spinal / lumbar puncture, so purely speculative). But that was the deciding factor for the rad onc to feel strongly about WBR over SRS.
So now another new wrinkle is the bone mets. (I feel like a salmon swimming against the current, and they keep opening new flood gates, making the current stronger against us).
I feel the urgency of doing the right thing by him but not having the professional (medical) credibiilty to argue my points (to doctors) in a non-offending manner (as a lay-person, 'what do I know'?, right?) So I get it that my requests / desires could be dismissed (ie: starting immunotherapy now and do simultaneously w/ radiation). And then I have to consider the what if's? (What if I push for this, and he is unresponsive to the treatment? What if he does have swelling and the immunotherapy does exacerbate that for him? What if I push for someting that will hurt him further?) This just sucks.
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- February 10, 2018 at 8:52 pm
Yes. Melanoma sucks. What if's are very difficult. And melanoma doesn't play by any rules other than sinister ones. Ultimately your husband has to make the decision about what to do and when. He could be unresponsive to treatment. He could develop brain swelling and necrosis. That is a risk of any radiation to the brain and more so with WBR. However, we have learned that immunotherapy with radiation does NOT increase that risk, nor make it worse it if occurs. What it DOES do, is increase the chance that the patient will win instead of melanoma. I would have no problem taking those things together personally. I would also have no problem yelling and screaming until I got them. Neither you, nor I, nor your husband are going to the doctor to make friends. We all go there to attain the care we need. However, I am certainly not the patient here. And, even though you are his love and advocate, the only person who can really choose what is best for him is your husband. Each person has to do what they think is best. I feel that my job on this forum is to share what the data shows. We (and I mean WE melanoma patients…who went where others had never been….and continue to do so every day!!!!) have put our lives on the line to demonstrate what works and what does not in melanoma care. Things have moved rapidly in melanoma over the past 5 years and not everyone (even "specialists") have kept up. I want everyone to have access to that information. What folks choose to do with it after that is very personal indeed. Melanoma has no easy answers. Hang in there. We ratties don't get very far without great peeps in our corner. C
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- February 11, 2018 at 12:40 am
I think we have dealt with three different radiation oncologists with my wife's brain mets (a local radiation oncologist who sent us to gamma knife plus two others at the gamma knife center). I give them a lot of credit for the fact that my wife is still here and is doing very well, 6 months after being diagnosed with two brain mets.
However, I got the strong impression that radiation oncologists are still of the mind that radiation is the only effective way to treat the brain. They were all fairly dismissive of immunotherapy for brain metastases (my wife has been on ipi/nivo and now just nivo since two weeks after gamma knife). I think they're mistaken and that the data clearly shows the benefit of combining radiation and immunotherapy.
If I were you, I would focus on your melanoma specialist and continue to lobby for immunotherapy with the radiation. You'll obviously have to continue to work with the radiation oncologist, but your husband is the patient and you both get to have a say in his treatment. Since it sounds like your mel specialist is amenable to combination treatment, I would make it very clear that that is the way you wish to go and continue to push to make it happen, soon. Ask questions in a way that forces the conversation to the outcome you want: don't ask, "if we do combo, when can we start?" rather ask, "can you request authorization from insurance right away and start the immunotherapy as soon as its received?" . Be assertive without being obnoxious, but push and push.
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- February 11, 2018 at 5:46 pm
Just wanted to weigh in on this. My doctor's are at Dana Farber and were very insistant that I needed immunotherapy in conjuction with radiation to treat my brain tumor. The radiation specialist was certain that it would be both treatments working together which would be the most effective. That was April 2017. So far the tumor is gone and I've no new ones. I know each case is individual and everyone's response may be different but I would push for immunotherapy with the radiation. I've had over twenty tumors disappear including two brain mets. Perhaps the question to pose after you suggest the dual treatment is "why not?" What is the reasoning for not going with both when there is data showing success for some cases? I wish you both the best.
Jennifer
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- February 12, 2018 at 12:46 am
Hi Diane – This is just to say that immunotherapy can/will work just as well on bone mets as it does on mets in organs and the brain. Mentioning this because, if you end up having to "pick your battles" this week with your husband's docs, the argument for immediate immunotherapy is priority (in my opinion). It's perhaps even more important now that WBR is the treatment they're proceeding with for the brain because, though everyone is different, it's not uncommon that hi-dose steroids might be needed to combat the swelling it can cause. And then the steroids need to be tapered down again to proceed with the immunotherapy, so, the more he can get into his system now before, the better!!!
It may be that the radioncologist has already "ramped him up" with steroids in preparation for the WBR as this is often the case, however, I believe that that is now considered to be "old thinking" too (after WBR, yes – very common – just saying so that you're prepared!!). I wish both of you the best possible outcomes!
Barb
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- February 21, 2018 at 5:24 am
Thank you – all of you. I do appreciate your thoughts and experiences. We strongly (but respectfully) advocated for immunotherapy to start before WBR, but the rad oncologist was not on board (citing possibility of too many treatments could exacerbate side effects), and the timing of starting WBR (immediately), would not allow for insurance to review (and deny & then review an appeal of) ipi/nivo.
So he is now mid-way through WBR, and 3 of 5 radiation treatments for femur tumor. He has not been given any steroids, and (fingers crossed), won't need them. WBR ends Monday, he will get infusion of Reclast (for bone mets) on Tuesday, and on Wednesday will start Ipi/Nivo. Not ideal, but as soon as it could be. The up side is that he feels fine, and has had no real side effects from radiation (no headaches or fatigue to speak of).
Thank you again. Diane
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- February 25, 2018 at 11:51 pm
Thank you so much, for all that you do, Celeste. You are amazing, and I am so grateful that you are so open and willing to post and chime in.
So far, so good – no ill effects other than very mild fatigue. Fingers crossed that this continues.
Have a wonderful day everyone! Diane
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