@judiau
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- November 9, 2023 at 3:51 pm
Well, sometimes new unrelated melanomas show up. (Very rare) And sometimes melanoma does metastasize to skin, although usually to primary site. Usually scalp melanoma metastasizes to the brain. So it would be pretty unlikely it would just pop up somewhere else. More likely to be a snagged cyst or something. But with a history of melanoma, you should be a seeing a derm regularly anyway. Go in. Get checked out. And if you aren’t seeing a derm. Go in. -
- November 9, 2023 at 3:45 pm
If I recall correctly it was the suspected rate of change but it does not hold a lot of weight. The overall staging is much more important. Assuming your melanoma was removed, you are continuing to seek derm visits as advised, and you are avoiding sun exposure you are doing everything you should be. Do not be surprised if you have more mole removals in your future. -
- October 20, 2023 at 8:29 pm
If your doctor recommends a follow up schedule for skin checks, do it. That, and skin protection, is pretty much how we all live. I am fair and have lots of moles. I’ve had lots of removals. Lots of weird ones. Until finally, a bad one. Hopefully you will never face that situation. -
- October 10, 2023 at 12:49 am
Hello, I am sorry to hear this. My primary is on my neck as well.I am not familiar with the treatment but Los Angeles does have multiple doctors who work on research trials and do a lot of cutting edge treatment melanoma. Dr. Hamid/Angeles Clinic/Cedars Sinai https://www.theangelesclinic.org/meet-our-team/doctors/ and I can’t recall the name of the UCLA doctor but he heads the practice there and does a lot of research. https://www.uclahealth.org/cancer/cancer-services/skin-cancer. They actually do a lot of research together. Many Melanoma Oncologists will consult/direct regarding cutting edge treatment so I think they could assist you with this protocol or suggest something that would be more effective.
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- October 3, 2023 at 10:59 pm
Well here I am updating my seizure journey roughly seven and a half months later. Why so specific, you might ask? Well, I never had another seizure. I never had any complications from Covid. I never had any issues from necrosis. The drugs caused a reduction in visible necrosis and I never developed necrosis symptoms. I have never had melanoma progression. I have spent all this time on truly god awful amounts of steroids and anti seizure medication. I have got to tell you, I am tired of trying out other people’s diseases. Epilepsy is a terrible disorder but not one any of my doctors actually believe I have but I want to drive and in CA, is the protocol. And because my brain already has a custody and post Mortem plan I had to wait a long, long time and jump through a lot of hoops. So one Covid seizure = 7.5 no driving. A minimum of two years of anti seizure medication, which feel pretty much like dexamethasone, except when I also had to take dexamethasone. That was worse. Haha. My oncologist treats me like I am one of the great winners in life but I have a pretty weak smile. Still here. Still alive. No progression. Able to drive. -
- September 29, 2023 at 5:34 pm
I had my 2b removed at 41 when still nursing a baby and I felt very young. But was told I was not actually young at all for a first melanoma. Some areas of the world have had a big uptick in skin cancer and they are being diagnosed at younger ages. I really didn’t think I’d see him start K let alone start 5th grade. When I progressed to stage IV six years later I was considered young. -
- September 22, 2023 at 10:00 pm
Jeez. I’m really sorry. How absolutely crazy and frustrating. Health care is filled with contradictions and leaps forwards and advances that seem like miracles and stupid mistakes and big blunders and very smart and educated people with different opinions. I hope you have some confidence in your diagnosis going forward soon. I wonder if you start immunotherapy in the meantime because it is effective in many types of breast cancer as well as melanoma. -
- September 22, 2023 at 9:49 am
Hello, I had a nasty journey with a non melanoma brain tumor with surgery twice and was receiving regular MRIs. Which is how we discovered my stage IV melanoma and whopper of a brain met in one go. Luckily, my neurosurgeon had one of the top melanoma specialists in the country on speed dial and actually at the major hospital I was already at at (big city) he literally dialed him first before talking to me. Sometimes those waits in doctors offices aren’t what you think! I did have that nasty rapidly growing met but an overall low tumor burden.I immediately started ipi/nivo. Took a week in the hospital for very high fevers. Had a third craniotomy. Restarted combo. Had a single blast of radiation. Went on to finish four doses of combo. Completed two years of immunotherapy. Took some low dose steroids along the way.
Now that the use of immunotherapy has become more commonplace there are a lot of less experienced and more rural oncologist treating melanoma in eyebrow raising ways that make me shudder. I am not saying anything about your care at all. Just something I am increasing seeing online. So make sure you are seeing someone who is very, very experienced with melanoma and is involved with trials even if only as a consultant. They do this all the time.
Incidentally I do have issues, many of which are related to the original brain tumor not melanoma, but I am technically NED at the moment. The multi-prong approach immunotherapy AND surgery AND radiation with steroids to control side effects is often needed.
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- September 18, 2023 at 12:39 am
Even with a rapidly growing tumor, I am shocked your doctors started chemo before the pathology arrived. I’ve heard of emergency radiation to stop a fast growing tumor but I distinctly remember my oncologist telling me could not treat my cancer even though they were “pretty sure” given my history it was melanoma. Treatments for different cancers are too distinct. Chemo is not effective on melanoma and prior to the introduction of immunotherapy, the prognosis *was* poor. But it isn’t anymore. Today it is CT, brain MRI, and often immunotherapy. And often, people live. No chemo. May I ask where you are located? This does not sound standard. Is immunotherapy not available in your country? -
- September 9, 2023 at 11:04 pm
Melanoma without a known primary is actually pretty well known and thus pretty documented on this site and other places although obviously really surprising to the person when it happens. If you search here you find find people. I am not sure what you mean by “complete regression.” Do you mean “cured.” I don’t think doctors really have case studies like that. We are really just entering a world with stage IV folks living 5+. So we may be entering that phase were it is no longer automatically a terminal disease. -
- September 9, 2023 at 10:56 pm
That seems like a lot of contradictory statements certainly. I am not certain where you are. In the US a PET scan is often used when cancer is diagnosed but insurance companies don’t like them because they cost twice as much as a CT so only only some people get them routinely. My very good oncologist doesn’t really care and only cares if something new shows up (I am NED). Usually a brain MRI and a full body CT are considered more valuable. I have never heard of any risks per se although it might be uncomfortable depending on the surgical site. However, because of the use of certain dyes with either the CT or PET and the interaction with a SNLB surgical site it is possible the injections would not be compatible. Is there a waiting list? Can this not be done during hospitalization? I’m a little confused. -
- September 9, 2023 at 10:44 pm
I am pretty sure the “post” above is a predatory bot.No. You can’t pick off cancer or a mole and hid it or make it go away. It will return. If you injure a mole or even rip it off intentionally it will return when it heals. Cancer is the same. We only see the top layer of the cells. The is why everything should be checked in a lab when it is removed and if cancerous a deeper surgery is performed and that new area of skin is checked in a lab. All around the borders are checked to make sure there are no areas left with cancer. Often the lymph nodes are checked too. If the area you picked off was a change to your skin, it would have returned. If the area healed and didn’t return it was probably pen or marker or tar or 1,000 other stains.
But, please consider getting some care on the anxiety front. I know it is really hard to make time with a baby and because of the baby blah blah. But you are a person, not just a parent, before and after having a baby. Hormones are brutal. Doctors can help. Best.
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- August 17, 2023 at 2:39 am
Yuck. I am sorry you are going through through this. I didn’t experience this with immunotherapy. But I have had a major stroke during my brain surgery for trigeminal Schwannoma and have taken a depressing number of neurological drugs many of which seem to have this effect. I’ve cycled through a lot of anti seizure drugs this year and I seem to get every side effect. I do find the heavy hands and limbs go away eventually. I would really like to be drug free for awhile. The drugs are absolutely exhausting. No detectable cancer in my body. My non cancer brain tumor has been stable for years and I still struggle with a world of side effects and endless nonsense.
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