@bubbles
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- January 3, 2024 at 3:28 pm
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
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- December 7, 2023 at 7:00 pm
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
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- December 1, 2023 at 8:21 am
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
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- November 29, 2023 at 9:18 pm
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 –
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
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- October 27, 2023 at 10:22 pm
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
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- October 18, 2023 at 8:01 pm
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 -
- October 18, 2023 at 9:52 am
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 –
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
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- October 14, 2023 at 11:41 am
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.
PseudoprgressionHope this helps a bit. Wishing you and your wife my best. Celeste
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- October 11, 2023 at 7:50 pm
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
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- September 28, 2023 at 12:54 pm
So sorry, Roberto. I know seeing her have seizures had to be very difficult for you both. As far as immunotherapy and seizures in particular, they are not terribly common with immunotherapy. However, I am not particularly familiar with the specific side effects specific to the meds she is on. Still, we have long known that immunotherapy can cause a substantial list of neurologic side effects (though they are not the ones most commonly experienced by most patients) including encephalitis and meningitis. Both of these can lead to seizures. Here is an older post regarding neurologic effects and immunotherapy. Pic of algorithm is blurry and can be seen and understood better if you click on the link within –Neurologic side effects to immunotherapy with treatment algorithm
Further, if she is experiencing a great deal of edema – she may have some electrolyte imbalance that can also cause seizures. Though if she was not swollen prior to seizure the swelling is likely due to fluid given hospital.
Additionally, the link I mentioned above also includes the algorithm for dealing with GI side effects (which are much more common) like colitis.
Yes, unfortunately, radiation, especially when repeated in a specific area can damage the tissue beyond it’s ability to repair itself and lead to necrosis with exposure to underlying structures. I am so sorry your wife had to deal with that as well.
Julie in So Cal, of this forum, had multiple treatments with limb perfusion as well as I think two rounds of intralesional therapy. Her presentation was much like your wife’s with the initial lesions being very localized. You may remember her or you can try to look her up on the search tab (though it doesn’t work very well since the “update”). I cared for her a great deal and miss her still. She passed a couple of years ago, actually due to non-small cell lung cancer.
I think noting a visible improvement in cutaneous lesions is a very good sign!!! So I think there is reason for hope if she is responding in that manner. Hopefully, they can get her reactions under control with anti-seizure meds and steroids. While taking steroids with immunotherapy is not preferred, we have learned that many patients can then tolerate their meds under their influence and STILL gain a positive effect from the therapy.
I don’t recall from your list – but given that Mariana has cutaneous lesions easily accessed via an injection – has she tried any intralesional therapies? They might be something she can tolerate as they are not so problematic systemically (though they do work best in concert with systemic immunotherapy) – and since she is currently in a much too weakened state for chemo, perhaps that is something that could be done until she is?
A ton of intralesional reports
Mariana and I have had a similar start in melanoma land – I was diagnosed as Stage IIIb (cutaneous lesion to right back with positive node to right axillae) in 2003. Surgery only tx. Another cutaneous lesion to left arm, no positive nodes in 2007. Surgery only. Lung and brain mets in April 2010. SRS to brain and removal of right upper lobe and part of right bronchus. Met to right tonsil Oct 2010. Surgery. Gained access to Nivolumab in Phase 1 dosing trial in Dec of 2010. Last dose of nivo in June 2013. NED for melanoma ever since.
Melanoma sucks great big green stinky wizard balls for sure. For many reasons, but mostly because it is a most unruly BEATCH that does whatever it wants and our most effective treatments leave roughly 40% of folks with it out of luck. Still, I do not ever feel that hope is misplaced.
Perhaps my daughter said it best ~
Ratties and HopeI wish you all the hope of hundreds of dragon flies.
celeste
