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- This topic has 10 replies, 2 voices, and was last updated 4 years, 7 months ago by
JudiAU.
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- August 21, 2019 at 7:33 pm
Hello all, Unhappily joining this community. š I suppose we all feel that way. I had a melanoma removed about five years ago. 2B lymph nodes unaffected. Routine CT and then xrays were fine for three years.Two years ago I had an MRI of my brain to check symptoms I was experiencing. I was grateful to find that it was that not melanoma , but a nastily placed large Schwannoma. I had surgery again, and then radiation. Along the way I temporarily lost my vision, had sepsis, steroid medical error that caused glaucoma, bizarre TMJ and my cheekbone shifting from anesthesia, and a major surgical stroke where I lost all control on my right side. Other than the terrible nerve damage in my face, I’m mostly functional and can still be a wife and parent to my three kids. Iām 46.
On my last MRI my tumor scraps were stable post radiation but they found a new mass and it is most like Melanoma. I was already with Cedars and have met with Dr Hamid who said I need to remove the tumor, follow with radiation, and then do immunotherapy. I have surgery with my same neurosurgeon.
Does anyone know how my previous surgeries will effect me? I assume it is riskier. Iāve already been through so much.
What form does radiation take? Do I complete when Iām stable? What is the time frame? What about immunotherapy? Is that usually coupled with radiation? Assuming it is successful, how long does this all take? Iām just trying to get a grasp of my future. My PET scan is not back yet so I donāt know if there are other sites.
I feel like Iāve gotten every side effect known to man and Iām having hard time facing brain surgery again when all I want to us drive carpool.
Judi
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- August 21, 2019 at 8:34 pm
I am so sorry for all that you have been through, Judi. I doubt that any of your prior experiences will impact your current plan of care. Given what you describe, it sounds as though you will be treated with SRS (stereotactic radiation) or gamma knife. In other words, pin pointed radiation to the what I presume will be the tumor basin as Hamid said that the tumor will be removed. While radiation alone is not particularly effective for melanoma, we have learned that when it is combined with immunotherapy, the results are better than when either treatment is used alone. Of course, you will need to have the pathology done on your tumor to make sure exactly what you are dealing with. If it is in fact melanoma, then you will also need to have BRAF testing done (which is pretty routine these days) to determine if your tumor is BRAF positive or not, as only BRAF positive tumors respond to targeted therapy. While all of this probably sounds like a foreign language, I put together a primer of current melanoma therapies that you may find helpful (there is a link to acronyms at the end as well) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.htmlHere are posts and articles related to immunotherapy combined with radiation: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
Here is a report that makes BRAF status a little more comprehensible: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
Hope this helps. And on that note – there is HOPE! I have been living with melanoma since 2003 (dx = Stage IIIB with a 10 and 12 year old at aged 39) – Stage IV since 2010, at which time I had brain and lung mets, but after surgery, radiation and participation in a nivolumab trial, I remain NED (no evidence of disease) for melanoma since 2010 with no further treatment.
Ask more questions as you have the need. This board is filled with caring peeps well versed in melanoma. celeste
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- August 21, 2019 at 10:59 pm
Thank you Bubbles. Iāve lurked here for awhile but had endless troubles with logins.Iām curious for the timing of everything. Do people generally receive radiation at the same time as the drugs? I have a friend who works as an ethicist at the hospital and she said they often give the drugs in ICU.
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- August 21, 2019 at 11:56 pm
All immunotherapy is administered IV, generally in a clinic associated with an oncologist’s office….depending on what you are getting and how efficiently the clinic runs, infusions last 30 minutes to an hour and you go home. Targeted therapy which is a combination of a BRAF inhibitor and a MEK inhibitor are capsules and tablets that the patient takes at home. The world of melanoma has changed dramatically since 2011 when immunotherapy and targeted therapy drugs were first FDA approved for melanoma. The only drug I know of that is administered in ICU is IL-2. It is not at all first line in melanoma treatment today. I think you will find the primer I put together enlightening as all of this is addressed.Radiation is also addressed in the primer. While docs were initially fearful to give radiation WITH immunotherapy, we have learned that responses are much better when they are COMBINED – given together – (or at least in very close proximity). Initial fears of brain swelling or necrosis if immunotherapy was given “too soon” after radiation to brain mets have proven unfounded. The link I gave you on this topic specifically covers this in detail through he presentation of many studies. celeste
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- August 22, 2019 at 12:03 am
So….if you are asking if getting immunotherapy means you will be in ICU – the answer is no. If you are asking if immunotherapy can be initiated while patients are in the ICU recovering from surgery, etc – yes, of course! Then once healed enough to go home, patients would come into a clinic for their following infusions. Not certain what you are asking. But, I hope that clarifies. C -
- August 22, 2019 at 12:02 am
So Iāve now read your helpful blog and I understand much better. That was very clear. Thank you. I also got the PET scan results in their are masses in my liver and lungs. So brain surgery that was scheduled for Tuesday on hold until they do a biopsy of one the tumors to confirm melanoma and probably type. -
- August 22, 2019 at 12:10 am
Well, as I always say – Melanoma sucks great big green hairy stinky wizard balls!!! Sorry that you are facing all this. But – as daunting as this is – you can do it!!! There really is hope! If the tumors type can be identified via a biopsy of the other lesions….it is possible that if they are melanoma that you may not need to have the brain tumor surgically removed. Rather, radiation may be sufficient, if combined with immunotherapy. Sometimes there are reasons to still have the craniotomy, but that would be a question I would have for my onc if I were in your shoes. Hang tough. c -
- August 23, 2019 at 3:52 am
I got through the lung biopsy today. It was surprisingly painful but the nurse who held my hand made a big difference. It made me feel human.Plus I got my first piece of quack advice, her brotherās husbandās favorite mushrooms for tumors. I really feel like Iām making progress.
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- August 23, 2019 at 12:16 pm
Melanoma requires a sense of humor….and peeps who keep us sane and “us”!!! Sounds like you got a dose of one and found the requirement for the other!!! HA! I’ve followed all the things that “CURE” melanoma for many years. This post may keep you entertained as you re-coop: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=mushroomsNow the foremost problem for most of these is that they only kill melanoma cells in a petri dish. On mushrooms specifically, I’ve eaten an awful lot of them for many years – before and after melanoma! They didn’t save me! But they are tasty!!!
Glad the biopsy is behind you!! Hang in there. c
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