Bubbles

Oh, Roberto. I am so sorry. Here is a link to all that I have on leptomeningeal disease on my blog:

Leptomeningeal disease

Most is a bit old (mostly because, sadly, not much has changed). There is one report from 2021.

You are correct. Melanoma sucks. LMD sucks even more. IT therapy seems to be the most promising. Last I knew, MDA was the only place in the states doing that – though that may not be accurate just now. I know BRAF inhibitors have bought some time for those with that mutation, but are certainly not an optimal solution.

Holding you and your wife in my heart. Celeste

I am glad you will be seeking additional consultation for your wife. She is very lucky to have you as her advocate. I would not be here had my husband not been sitting staunchly in my corner. Advocacy like yours makes all the difference.

c

Hi Brian,

I am so sorry for what you and your wife are dealing with. Her story is incredibly reminiscent of mine, not many of us are lucky enough to experience tonsillar melanoma, but I was one.

Am I correct in understanding that your wife has not had any immunotherapy for her melanoma yet? If so, I am very confused. There is absolutely no reason to hold immunotherapy until off steroids. In fact, some patients on immunotherapy are maintained on steroids so they can tolerate said therapy. Further, the ipi/nivo (Yervoy/Opdivo) combo has the best response rates going in melanoma last I heard though Opdualag can certainly be a viable treatment.

If BRAF positive, as about half of melanoma patients are, then a combination of a MEK and BRAF inhibitors can certainly be effective. However, though there are exceptions, the responses to targeted therapy are often not durable. Meaning, they can be super effective in most patients for 6-9 months but then melanoma learns to work around them. I have seen no data that says immunotherapy is not effective post targeted therapy. In fact, targeted therapy is often used to decrease tumor burden in patients and then they are switched to immunotherapy before the targeted therapy loses its effectiveness. Of course, the hard trick is knowing when exactly that is.

The good news for your wife is that many studies show that immunotherapy following or concomitant with radiation can make the immunotherapy even more effective. So, though it is unfortunate that she needed that treatment, it is good in her circumstance that that is the case.

If you have read my blog you may have found these links…but if not…

Here is a primer that unfortunately remains pretty up-to-date: 2022 updated Primer for melanoma treatments

Here is some data re steroids and treatment (lots of articles, lots of links within them) – Steroids and immunotherapy

Radiation and immunotherapy – radiation

And finally, if the doc is now considering your wife’s treatment adjuvant – that’s fine. She still needs it!!!! ASAP!!! In my phase 1 Nivolumab as a single agent trial – back in 2010 – I was status post removal of lung and tonsillar mets (as well as cutaneous lesions in 2003 and 2007) as well as SRS to a brain met. Therefore, at that moment I had gone to a great deal of trouble to remove all measurable disease. So, I was in the Stage IV adjuvant arm vs other patients who were in the Stage IV active disease arm. Folks in my arm did better for obvious reasons. Immunotherapy works best with a low tumor burden!!! Additionally, my study (and others like it) have allowed the FDA to approve immunotherapy (and targeted as well) for melanoma patients who have no current evidence of disease. So, however you choose to look at it. Your wife needs systemic treatment immediately.

Here is a list (not at all comprehensive) of melanoma specialists you may consider seeing: Melanoma Specialists

These are all excellent and Mark gave you some good info as well. I am partial to Dr. Weber as he ran my trial back in 2010 and remains on the cutting edge of melanoma therapy. He will often respond to emails and calls so you may be able to reach out to him yourself.

Some of the data may seem old and this site not particularly well visited. Thankfully, that is because it is now accepted information. Oncologists treating melanoma patients should be fully aware of all these points and have applied them to their practice long ago. While more treatments are needed for those who do not respond to current FDA approved therapies – the ones that are considered basic standard of care – should be implemented rapidly and efficiently. Please reach out to a physician who is aware of what drugs are first line treatment vs second line and understand that steroids are NOT a reason to postpone therapy.

As I am sure you have gathered, melanoma doesn’t play and can do anything at any time. However, you are not without hope. My children were 10 and 12 at my initial Stage III diagnosis in 2003 when I was 39. They were graduating high school and starting college when I dealt with my progression and joined the nivo trial in 2010. I had my last dose of nivo in 2013 and have been NED (no evidence of disease) for melanoma since.

I hope this helps. I wish you and your wife my best. celeste

Wonderful news, Luv!!!! Hang tough! c

Big congrats, Ch!!! Thanks for sharing. Enjoy!!! celeste

Excellent words of advice, Billy. So glad to hear that you are doing so well!!! Enjoy! celeste

Hi Jeff,

While you are correct that probiotics in pill form from a bottle have not generally been found to be helpful in creating a microbiome in your gut that aids immunotherapy – those from natural sources – yogurt, kefir, sauerkraut, etc – do!!!!

If you are interested – here are a zillion post on the subject (articles and authors notes, with my comments in red, many links within) – The real poop on the poop shute!

Sorry, keeping a sense of humor seems to help, too! HA! yours, celeste

I had lots of rash and skin issues during my 2 1/2 years on Nivo. After going off nivo, the rash gradually faded, though sometimes rearing its head in fits and starts. However, with my last dose in 2013, I do not have any issues with itchy rashes from that any longer, although the vitiligo has remained. So….once off treatment you will find that the rashes will gradually resolve in most cases. Sometimes it just takes a minute.

But….there is a good side to this as well – ASCO 2015: Adverse effects from Nivo and how they are associated with survival

Specifically – “Statistically significant progression free survival and overall survival differences were seen in patients who experienced any grade of AE. Improved progression free survival was associated with rash and vitiligo. Rash was associated with improved overall survival…”

celeste

These days most local oncologists are FINALLY well versed in administering and watching appropriately for (and treating if need be) side effects related to immunotherapy. This was not always the case! Currently, for very straight forward melanoma cases, a second opinion with an expert is not required, though never a bad idea. However, treatment is essential. Getting treatment with immunotherapy (the ipi/nivo combo in my opinion as is has the best response rate) quickly would be my priority. However, given your situation I would feel better with a follow-up second opinion. I would look to their expertise re: Their best treatment rec. Their rec for follow-up. Any additional tumor testing they would suggest. Any additional information, ideas, or advice they might have.

Often the local onc can put in motion any suggestions they make. Or, you can switch to the expert’s care entirely. I would make sure that I could follow-up with them again, should any complications (side effects, progression, etc) arise.

c

Hi L,

Sorry for what you are dealing with. Sadly, melanoma can do anything it likes. However, it is not the death sentence it once was. Especially since it seems you are dealing with a localized lesion that was found relatively early. You may find the primer I put together helpful in starting your understanding and formulating questions about your treatment and options –

Primer – updated 2022

Further, there is a link at the end that notes world renowned melanoma specialists.

Know that there are even more treatment options in studies. Hang in there. There is certainly hope! I wish you my very best. Celeste

Your local onc really needs to get on top of the current treatments for melanoma if they are going to treat melanoma patients! Here is a link that says a great deal – with more within:
Intratumoral or Intralesional therapy for melanoma – again. Yep, AGAIN!!! ASCO 2021, here we go!

Hope you can attain some good options at Emory. c

Yes. Immunotherapy can be used after progression even though you were treated with immunotherapy already.

Here are many articles that discuss that issue: Immunotherapy after Progression

Local recurrences are much better than melanoma in lots of parts of your body. I would think that your husband would need evaluation of his brain and body at this time. However, fingers crossed that no other issues will be found.
c

Sorry you are dealing with this.

But there are options. Immunotherapy again. If NED in all other parts of his body, limb perfusion therapy might be an option if you are talking about a local recurrence in an extremity. Possible intralesional therapy, where the lesion is injected directly. And…if none of those seem wise, then sometimes surgical excision is a good idea.

Some links to articles you might find helpful –

Intransit mets/limb perfusion

Intralesional therapy

Excision

Further, there are various new treatments as well as trials that might be beneficial. Whatever treatment you and your oncologist decide upon – there is hope. Wishing you and your husband my best. Celeste

Hi MB,

Sorry you and your wife are dealing with all this. Unfortunately, the fatigue caused by immunotherapy is often significant. While immunotherapy is slower than some processes to work (Docs are warned by immunotherapy experts to – “Be patient with the patient!”)it can also cause something referred to as pseudoprogression – where the tumors appear to grow due to the influx of t-cells that are hopefully arriving on the scene fully armed and ready to do away with the melanoma.

Here is a post that describes immunotherapy and has a chart included re response times –
Primer for Current Melanoma Treatments – New and Improved Version 2022!!!!

Here are a zillion articles on pseudoprogression – some may be more applicable to your concerns than others – my interpretation is in red. Articles are cited.
Pseudoprgression

Hope this helps a bit. Wishing you and your wife my best. Celeste

Perhaps the post I wrote in 2013 may interest you, Carmelo:

Melanoma…a disease without discrimination!!!

SUNDAY, FEBRUARY 10, 2013
Melanoma…a disease without discrimination!!!

Just a few days ago, Bob Marley, Jamaican singer, songwriter and musician, would have had his 68th birthday…had he not died from metastatic melanoma at the age of 36, having been diagnosed with melanoma at the age of 32. Ironic that a man who spent a good deal of his life and music fighting against prejudice and oppression should die from a disease with absolutely no sense of discrimination. Bet you didn’t know melanoma rolled like that did you? Well, it does…

Melanoma has no perfect prejudices. Despite the 76,250 people diagnosed and the 9,180 deaths it caused in the United States in 2012, melanoma has no allegiance to country or continent. Across the globe, 160,000 new cases of melanoma will be diagnosed, leading to 48,000 deaths, each year.

Melanoma affects men more than women. True….but melanoma found me and a zillion other women I could name! Men develop melanoma primaries most often on their back, while women are more likely to find a lesion on their legs. Mine was on my back, Bob’s was on a toe.

Melanoma is more frequent in people with fair complexions, blue/green eyes and blond or red hair. True….but Bob didn’t really fit that description now did he??

Melanoma affects mostly older people, with the average age of diagnosis being 61. I’m not 60. Neither was Bob. Neither were lots of folks. In fact, melanoma is the most common cause of cancer in people between 25 and 29 years of age.

Melanoma is associated with skin exposed to damage from the sun. There is a much greater risk of developing melanoma if you have spent a lot of time in the sun or tanning beds. Tanning bed use before the age of 35 increases the risk of developing melanoma by 75%. Yet, melanoma can occur initially in the bowel, eye, other internal organs, and under big toes. Not a lot of sun exposure going on in those places now is there????

Certainly, melanoma likes some groups. It likes some people who already have nevi (moles) of certain types and relatives of folks who had melanoma. But basically, it loves just about everybody.

So….what is one to do to arm against such a color blind, prejudice free killer?

KNOW YOUR SKIN and mind your A, B, C, D, E’s!!!!!!!!!!!!!!
See a dermatologist if you have a mole, lump, or lesion that shows:

Asymmetry: One side that doesn’t look the same as the other side.

Borders: Edges of the “spot” are irregular with scallops or notches.

Color: The color of the “spot” has changed from what it once was….or, there are different colors within the lesion. And, because melanoma is all about equal opportunity….the colors may include tan, brown, white, red, or even blue….not just your basic black.

Diameter: Some data indicates that any lesion larger than 6mm in diameter (about the size of a pencil eraser) is suspect. However, given the fact that melanoma likes things in every size…if the diameter of any lesion is increasing…even if smaller than 6mm…off to the derm you go.

Evolution: A mole or spot that keeps changing….in size, shape, color, elevation. Or, one that gains new symptoms…like bleeding, itching or crusting.

If you think you have any lesion matching anything described here….RUN to the dermatologist for an evaluation. Early removal of questionable lesions is your best insurance against turning into me….or Bob. Data currently available suggest a greater than 99% long term survival for patients with melanoma in situ and greater than 90% long term survival for patients with lesions less than 1mm in depth whose lesions were removed early.

Happy Birthday, Bob! “One love! One heart! Let’s get together [against melanoma] and feel all right!” – c