I am brand new to this group. My dad (age 72) was just diagnosed with stage 4 melanoma last week. It has been found in his lungs, lymph nodes, liver, spine, and brain. Full brain radiation began Friday (one treatment so far, no weekend treatment, 10 treatments total). We are still figuring out what treatment will be done on the rest of his body. He has ulcerative colitis and they are concerned that immunotherapy will be too tough on that disease. Some general questions I have: Has anyone gone through full brain radiation? What was your experience with it? After one treatment, my dad is already having issues forming sentences. Any tips/tricks/advice on helping his brain create new paths? Has anyone else been diagnosed with melanoma, but also has ulcerative colitis? Was immunotherapy done or another treatment? Any and all advice would be greatly appreciated! Thank you!
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Hello! I will say now that I do not have experience with full brain radiation.. or colitis.. but my boyfriend had a brain tumor and it has affected his speech and his memories to certain extents. He has found that listening to music and trying to sing along brings back his memory of forming the lyrics. He forgets words, that I know he knows, and it takes him a minute to figure it out. Sometimes it comes and sometimes it doesn’t. I’ve had experience with Alzheimer’s as well, and word searches and soduku; things like that help the brain fire. I’m sorry I don’t have anything super relatable. Keep us updated!
Thank you for responding! I’ll take any advice I can get. My mom has been at the hospital the entire time and hasn’t been able to research anything. I hope your boyfriend is doing well!
Research and this forum helped me. When I didn’t know what to do or where to start, here helped. And then research on my own came with it. My boyfriend is doing well thank you 😊 keep us updated on the choice the doctors think is the best!
Welcome to HealthUnlocked. I'm sorry your dad has been diagnosed with such an advanced stage of melanoma.
I am a caregiver/ partner with my husband who has stage 4a melanoma, but so far no brain involvement. As i understand it, whole brain radiation is used to try to reduce the presence of many tumors, especially if they are difficult to reach via gamma knife.
Since all of the immunotherapies have high GI side effect risks, I can see how colitis as a pre-existing status makes these choices potentially out of reach, but your melanoma specialist will be the best to direct this.
If he has had any tumors removed they likely are being analyzed for the genetic type. If he has the V-600 type (50% of melanomas are in this gene pool) this helps inform immunotherapies which were designed for this population. My husband is not this type: he is "wild" type (anything other than V-600). They will establish his BRAF. If he has this mutation then it is possible that medications which target that pathway may be an option. For most patients, BRAF meds are "short term" (months) but help with systemic shrinkage of tumors, and usually very quickly, which buys time, stabilized the patient, and can then allow for next steps to be determined. There is a very small subset of this population that have been maintained very long term on BRAF meds, but this is not the norm from the literature.
Here are a few sites to get you basic orientation to melanoma and various treatments:
1. melanoma.org/ there are webinars, resources for patients and caregivers here that are all scientifically supported. There is also an Ask The Nurse section. Beware of random Google searches for anecdotal "stories".
3. medpagetoday.com/reading-ro... This is from the American Society for Clinical Oncology Reading room 12/15/18 summarizing Research trials for Immunotherapy in melanoma brain metastases. It does include looking at patients who also had exposure for radiation and BRAF and Mek in the cohorts.
We will remain here as a support community for as long as you would like us here. You may also want to have a conversation while your dad is in hospital with their palliative care team. This is different but complimentary to hospice care. Palliative care teams focus on assisting patients and families to determine how they want to live with serious illness like cancer focusing on values and preferences which can then guide treatment choices. We have had those consultations and have attended a training with a palliative specialist and found it really helpful.
I’m sorry you are on this journey, but you are not alone. I hope you also have support locally for yourself and will avail yourself of these persons and their varied offers of help. I’ve learned not to say no.
Thank you, Missy. They are currently doing genetic testing on the biopsies from his lymph nodes surrounding his lungs. They are also doing a full spine MRI today because my dad is experiencing immense back pain. Day 2 of radiation is today at 1:30. In need of all the good vibes!
It sounds like you are all trying to get as much assessment and relief for your dad as possible and as quickly as possible. That's great. Sending good vibes your way.
Here are the kinds of questions I tend to ask when there are tests and then recommendations:
1. What do you hope to learn from this test/ procedure? Is there any other way to get this information (especially if the process is invasive)?
2. What is the timeline for evaluation of the data learned?
3. What do you recommend as a treatment and why?
4. What is the goal of the treatment/ expected outcome and duration of effect? (Is this to address a symptom for comfort? to extend life? for cure? for quality of life? with what side effects?)
5. What is the % likelihood of the treatment goal being reached for my family member based on the literature and your clinical experience/ clinical experience of the team you consulted with?
6. What other treatments did you consider and why did you not recommend them?
7. What if we decide not to choose this treatment? What can we expect then and why?
8. Is there a clinical trial that could be pursued and will you assist with connecting to that trial?
Other HealthUnlocked folks may have different/ additional questions they find helpful in gathering information and trying to sort through what you learn.
My son had whole brain radiation and combo immunotherapy. I wish your Dad well. It's important to gather information from the doctors and read the notes from his scans.
I am so sorry to hear that. How did your son do with his cognitive ability? My dad will have his 4th treatment today and is already struggling. I know cognitive decline is worse for older adults, but just wondering if you have any experience or tips with that.
Radiation is harsh, not going to lie. My son was exhausted and he was 24 at the time. It's a lot to go thru. He also had tumors on liver, lungs pelvis, ribcage, right femur. It spread to his brain and spinal fluid surrounding his brain.
I'm not a doctor, so I don't want to speak on their behalf. What didn't work for my son may work for your Dad. I've seen others go thru the same treatment and have remarkable results.
Your parents are lucky to have you in their lives. Though this will be a difficult time for your family, their is an opportunity to become closer through it. My best to you.
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