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Advice Needed for Mom Treatment

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Advice Needed for Mom Treatment

Posted By
Selle7
11/19/2020 3:18pm
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Replies: 12

Hi all,
I posted on here years ago about my mom's stage 3C melanoma prognosis. She had a wide excision After 4 years with some local recurrences, our world came to a crashing halt when my mom was diagnosed in the emergency room with melanoma in her brain (and likely lungs). The melanoma in her brain was advanced. 3 significant tumors and one small spot. Since then she has had 3 craniotomy's after two separate incidences of them bleeding. Although the surgeries were successful, and she does not have any apparent major neurological deficits, my mom is weak and defeated physically and emotionally. She has been struggling with stomach issues/pain due to the steroids and isn't able to stand up as she's been bed ridden for 6 weeks. We are in Canada and dealing with B.C. Cancer. Throughout the years I have continued following this forum, and have read a lot on Celeste's blog (what an amazing resource). My mom's neurosurgeon seems to know a ton about Melanoma treatment, but the oncologist and radiologist seem just ok.

The current plan is:
1) Radiation. The radiation oncologist would like to do WBRT rather than stereotactic on the 3 cavities and 1 remaining spot. He said he is willing to do both. The neurosurgeon did not like the idea of WBRT and is phoning today to ask why this is being suggested. Thoughts? We have an MRI booked for next week and then we are hoping to get her strong enough to do the mapping required to do the stereotactic radiation.
2) PET Scan which is booked for middle of December. There are 2 spots on her lungs they want to get a better look at, as well as assess the tumor burden in the rest of her body. The oncologist said then he will determine whether to use the ipi/nivo combo, single agent nivo, or BRAF drugs (My mom is BRAF positive) as the next step of treatment.

I think this all aligns with what I've read here and on Celeste's research regarding Brain Mets. But, looking for any extra insight into what I may be missing, other things I should be asking, etc. Any feedback, comments, hope, would be welcome :)

This is from ASCO 2020 and still accurate on treating brain tumors. I would push for SRS cyberknife or gamma knife vs old school whole brain which doesn’t show any survival benefit and a lot of cognitive issues! https://www.onclive.com/view/malignant-melanoma-management?seriesVid=12

Link is from 2019 not 2020, that is why I stated it was still accurate. Wish we could edit mistakes!!!

Thank you for that article. It’s a great discussion of my moms situation as it discusses when Braf drugs could be used too. I just think especially in my moms case, where the 3 tumours have been surgically removed, there isn’t any justification to go so aggressive with the radiation. What good could it do?

Every case is different, I had three small tumors in my brain 4-5 mm is size which were successfully zapped by cyberknife SRS radiation back in 2013, which allowed me to qualify for a clinical trial. Back in the day active brain Mets meant no clinical trials! Whole brain radiation has lost support with leading melanoma experts. Good luck with your mom!!!

Sorry for what you and your mom are dealing with. I'm glad that you've found my blog of some use. Ed's post is great. Having read my blog, this will probably be no surprise to you, but I really question the delay of systemic therapy until sometime after mid-December. That seems unwise and certainly NOT warranted!!! I have many articles posed that note radiation and CONCOMITANT immunotherapy (targeted therapy too, for that matter) work much better when combined than either of those therapies alone. Here's a link to nine zillion reports with data that demonstrates that - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

Further, I am sorry that your mom has had to deal with bleeds post surgery. Some docs fear that starting immunotherapy or targeted therapy right after or with surgery/radiation could make that worse. However, we know that that is not true. Here's just one such report - http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/immuno...

I agree with Ed. The data also shows that while SRS can be beneficial, without deleterious effect - the same cannot be said for WBR in regard to melanoma. Multiple sites can be treated with SRS. I have known patients who have had it done, even when the tumors number greater than 10. Using SRS to 1-5 sites is not at all uncommon. I do agree that radiation to your mom's tumor beds would be good to do. While the bulk of the tumor has apparently been removed from 3 locations, clean up of random remaining melanoma cells is essential.

If I were in your mom's shoes I would be advocating for SRS and the ipi/nivo combo ASAP. If her scans in December show no additional tumors - AWESOME!!! If they show the presence of more mets in the body - well, at least you know you've been doing something to attack them and you can discuss whether or not to switch to targeted therapy at that time. That's just my two cents, but I figure that's what you're asking for.

I wish you and your mom my best with whatever track you decide is best for her. Yours, celeste

Thank you so much for your detailed response. The bleeds were actually all separate events which made them want to remove all 3 surgically. Initially the plan was to do radiation on two.
Unfortunately because of the 3 craniotomy’s in 6 weeks, my mom isn’t in the best physical condition. She can barely sit up as she’s lost so much strength and the steroids are causing her a lot of stomach pain. I also think there’s an element of trauma involved that’s holding back her recovery.
The oncologist said she’s not in condition to the dual immuno right now, and I don’t know if I disagree. That being said, would it be wise to push for targeted therapy ASAP as it seems to be easier to take and more tolerable? Then try immuno when she’s had more time to recover?

He also mentioned that she needed to wait until she was off steroids to do immuno too.

Bubbles - (11/19/2020 - 11:17pm)

Some people have lots of side effects with immunotherapy - some very little. The same with targeted therapy. You won't know how it will be for your mom until she tries it - unfortunately. Being on steroids is no reason not to give immunotherapy. Some folks have to take steroids while ON immunotherapy to deal with the side effects. We have learned that doing so - when needed - is not contraindicated and does not prevent a response. There is a lot of pertinent data on my blog. Here's a report form way back - http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune... Here's another - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/one-m... And there's this - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=jubes

I don't think choosing to roll with targeted therapy (in the form of a BRAF/MEK inhibitor combo) is a bad idea at all. Those work in the brain. Recent data supports that, like immunotherapy, they too work well in combination with radiation. The only difficulty with them is tumor work around, which occurs for most in about 6-9 months. However, they would still be a good start at systemic therapy from which you could jump to immunotherapy if you need to and some peeps are managed successfully on targeted therapy for months and years.

Melanoma and its treatments are far from straight forward and very much depend on patient preference. Your mom will have to decide what is best for her. I am glad she has you to help her plow through all the crazy. Making sure she is being seen by a melanoma specialist - or at least an oncologist well versed in and experienced in treating melanoma patients - is super important. Melanoma doesn't play. As I'm sure you are more than well aware. BUT!!! There is hope. As Ed noted, many of us post brain met (and lung - and elsewhere) peeps are still alive and kicking.! I am 17 years post my original melanoma diagnosis and have been NED for 10 years post a brain and lung met.

JudiAU - (11/19/2020 - 10:27pm)

I see a “name” melanoma specialist, starting when my Brian met was found. I also had nurperosurgen from my previous unrelated brain tumor. They had slighl,y different preferences as to the order of treatment but the both wanted speed speed speed, immunotherapy immediately, surgery, and radiation during immunotherapy. There are benefits to concurrent radiation to the tumor scraps. I’d opt for targeted radiation and not Whole brain.

I had two rounds of combo, spiked very high fevers and had to be hospitalized for a week. Had brain surgery, took related steroids, restarted immunotherapy. And was restarted on a different steroid which they won’t let me stop.

I have had a consult with a radiation oncologist and a neurosurgeon prior to my starting immunotherapy. If one has up to 18 spots (smaller than 2.5 cm) in the brain, radiation oncologist would do it using a gamma knife. The neurosurgeon said that once the spots are greater than 2.5 cm, standard treatment protocol calls for surgery plus radiation. Radiation of the entire brain is used only as a last resort. So when you say that her brain mets were "advanced" and "significant" I am not sure where sizewise do they fit being that 2.5 cm seems to be the deciding line.
I understand that having multiple surgeries within such a short span is super exhausting on the body and the mind. Steroids are terrific but usually used for short term following brain mets surgery. Part of her stomach issues maybe attributed to possible pain meds she maybe taking. Hopefully, she will be off both soon and her abdominal pain will subside and she will regain her strength.
I would also definitely seek a second opinion from both a melanoma oncologist and a radiation oncologist. As I have lived in Toronto most of my life and now live in Michigan, I am familiar with different healthcare systems. You do not necessarily need to see these specialists in order to get your answers. The reason I say this is that when I had received my diagnosis, my daughter who lives in Europe, researched and found a number of melanoma specialists. She contacted them through email and to my amazement she got replies from Switzerland, Israel, Germany and Greece. I would have never thought this would be possible. I am just including the following web site which has these melanoma specialists listed on the site:
Surrey
British Columbia Cancer Agency

13750 96th Ave.
Surrey, British Columbia V3V 1Z2

bccancer.bc.ca
Christopher Lee, MD, 604-930-4017
Gary Pansegrau, MD, 604-930-4064

Victoria
British Columbia Cancer Agency

2410 Lee Ave.
Victoria, British Columbia V8R 6V5

bccancer.bc.ca
Kenneth Wilson, MD
Vanessa Bernstein, MD
250-519-5570

https://www.melanomanetwork.ca/melanoma-treatment-centres-and-practition...

As to the PET scan, they show metabolic activity of any kind which can be due to tumors or inflammation. I am under the impression that CT scan is more effective in detection of new metastases in the body, especially lungs, chest and abdomen. MRI is superior in detecting brain mets.
Healing thoughts and best wishes.
Melanie

Hi Melanie,
My mom's three tumours were all around 2.5cm, they have all been removed surgically at this point as on two different occasions, they started to bleed and had to be removed quickly. So now what we are left with is 3 tumour beds, and 1 "small spot". It's difficult to see on the CT scan and she is getting an MRI later this week to get a better look. Like you said, the MRI is the best to do that. In B.C. where we are, we don't have Gamma Knife but a different type of stereotactic radiation that apparently isn't as precise. The radiation oncologist claims that because of this, the amount of the brain he would have to radiate (3 cavities, 1 spot) would still amount to 70% of the brain and that he would be concerned about more tumours growing in the other 30% if we don't do whole brain radiation.