Does it work?: Met with radiation dr... - Melanoma Caregivers

Melanoma Caregivers

Does it work?

carlsbad317 profile image
4 Replies

Met with radiation dr yesterday about 20 days of low dose treatment. I have read that radiation has been successful and since tumor has almost doubled in size is the best next step after 3 doses of Nivo/Ipi.

Literally within the first minute of consultation he states radiation does not work on melanoma, it is not proven to be successful.

Things that make you say hmmmm.... there is no plan to go back In Surgically to remove as it as been deemed inoperable.

Not sure what to think.

Written by
carlsbad317 profile image
carlsbad317
To view profiles and participate in discussions please or .
4 Replies
Crycleo profile image
Crycleo

You need to ask the doctor specific questions. If you don’t ask, they won’t volunteer the information. Did you ask him that if radiation doesn’t work, then what is he going to do next?!!! If there isn’t anything, you need to know that as well. If you want aggressive treatment, it needs to be stated. If he doesn’t think that will work, then he needs to tell you why. In addition, you could ask what are your options at this point in time? What about a clinical trial? He should be able to tell you what options there are, including the option of doing nothing. Don’t let someone else make that decision for you. It’s the patient’s life at stake here, and it’s the patient’s choice in conjunction with the doctor’s advice. Good luck to you, and I wish you the best.

We are also looking into possible radiation during immunotherapy and have heard similar conflicting information about whether radiation works for melanoma . Our oncologist did say that radiation during immunotherapy can be more effective than radiation alone. I, too, would like to understand this . There is a radiation therapist on the Belong app that answers questions and i have found him

helpful . You might give him the specifics of your case and see what he says, just as additional information ,not to replace what your own specialists say . They, of course, know you best . Wishing you all the best .

MeAndMom profile image
MeAndMom

My “understanding” is that radiation can be very effective on specific melanoma tumors but is not curative systemically (though yes there is talk about combining with immunotherapy). I just took my mother for consults with radiation oncologists who specialize in SBRT, Stereotactic Body Radiation Therapy, for a metastatic melanoma tumor in her sacrum that was undiagnosed prior to joining a clinical trial (Pembro + PV-10 injections) and grew. Saw two in Pennsylvania where she lives and a leading doc at MSK (much much better). SBRT is high dose, low fractions (for example one plan was 3 daily sessions at 27 GY after doing a simulation for precision planning). Plan recommendations depend on the specialist, tumor and disease etc and this was specific to her case. We were ready to do it after learning about SBRT and believing the side effects were minimal (again, specific to her tumor location) as a palliative measure to reduce, destroy a very painful bone tumor. However the MSK doc said she didn’t need it after all because her targeted meds (Vem Cobi) that we got her on when discovering it is working:). He said to keep it in mind if needed down the line. The tumor did cause 2 fractures in her sacrum we discovered so that adds insult to injury of not having it diagnosed sooner. Again depends where your tumor is, why they are recommending radiation and what type of radiation, etc. Definitely seek opinions from specialists! Keep us posted:)

Heartsinmo profile image
Heartsinmo

My husband has Stage IV Nodular Melanoma with mets in lung and some lymph nodes in pelvis. Ipi and Nivo did not work so they did radiation on the lings which had doubled in size. It worked! Lungs shrank and no evidence of disease but pelvic nodes swelled so oncologist had him do radiation on them. We are awaiting scan and results. Our oncologist said that there is some research that radiation “jump starts” the immunotherapy! I hope you have good results with it!

You may also like...

Return to Work blessing

This has been a good week for Wayne and for me. He started back to work remotely this week and will

SOS, Does anyone have Mektovi or Braftovi leftovers?

One girl is looking for help. She has melanoma 4th level with 80 metastasis into the brain, Mektovi...

Melanoma radiation for shoulder planned

where the melanoma has continued to grow and is a dark blue/ black. It is actually about double...

Full brain radiation and immunotherapy questions

brain create new paths? Has anyone else been diagnosed with melanoma, but also has ulcerative...

Radiation targeted and tumor Infiltrating lymphocytes (TIL)

unconcerned about this. He also says surgical removal of these ongoing tumors seems now to be a bad...