MPIP: Melanoma Patients Information Page

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The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Coopshow's picture
Replies 1
Last reply 4/1/2020 - 1:37am
Replies by: JudiAU

My wife started the opdivo with yervoy trial infusions yesterday. Seemed to go well. I brought her home today and checked her temp randomly. She has spiked a 103.1. I got ut down with Tylenol and of course called the doctors for advice. Simply to watch it over night and if it returns to head to the er which is normal response to that fever. My question is this. Of the people out there who have had this combo have any of you had this sort of reaction so quickly? Is this a common reaction? Yervoy says that a fever can happen but nothing ive found online has mentioned it with opdivo. Im just extremely worried that something is very wrong. She says she feels fine which is crazy in my mind for a fever so high. I am just reaching out to see if anyone else has had this experience or jf this is really a rare occurrence that I should be more concerned with. Thank you in advance for any words of experience.

Worried Hubby

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caman's picture
Replies 10
Last reply 3/30/2020 - 10:44am
Replies by: Bubbles, caman, ed williams

I have two choices..keytruda first then remove the cancer node then go back on keytruda or remove first then go on Keytruda.

Anyone with suggestions, advice or experience would be greatly appreciated.

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gopher38's picture
Replies 2
Last reply 3/31/2020 - 4:11pm
Replies by: gopher38, MelMel

So I think that some numbness and weakness in hands and feet is pretty common with both nivo and ipi. Wondering if anyone - other than myself - has had it go beyond that to significant pain? Up until a few weeks ago, my melanoma hadn't had any substantial impact on my physical abilities. I started to notice a little numbness in the feet, and then almost overnight, it exploded into severe pain in the legs, mostly in the calf muscles on both legs, along with numbness in the feet. It was like having a charley horse in both calves, but it never went away. Especially bad at night, which caused me to go 4-5 nights with truly almost zero sleep. Finally had to call the doctor, and they initially gave me some pain killer that did nothing, and then a combo of oxycodone, gabapentin and steroids, which eventually got it under control. Eventually the pain in the muscles went away, but now it has moved just to the feet and toes. Still very painful, but not quite as bad. Only doing the gabapentin and over the counter to control the pain. Kind of shuffling around now. Anyway, still haven't identified a cause, be it adverse reaction to treatments or spread of mel somewhere or something else. Just wondering if anyone else has had something similar.

By the way, I mentioned in another post that I had a gamma knife recently. They specifically said that they didn't believe the two were related, because the area of the brain where I had the gamma knife has nothing to do with my legs. They said it was near and area involved in vision.

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Replies by: Threefitty, gopher38, Bubbles, Anonymous

I arrived "here" as a 2017 stage 3B. Did "probably Optivo" in a blind clinical trial through 6/18. Clear scans until mid-Feb. (very minimal side effects, and the yervoy only arm was collapsed during the study) hence the "optivo arm" surmise. Doc shares it.)

Regular quarterly CT revealed a mass in the spleen area. You can't biopsy that without big risk ("it's just a bag of blood vessels") so I had a PET CT

The PET CT revealed additional "very concerning areas" in the neck (small, non-palpable) and stomach fundous area. The plan was to biopsy the neck and get an endoscopy. The neck would be first, but not uncomplicated as it would require some isotope tracing, assembling a surgical team to work with radiation, etc.

On Friday before last, that was the plan. On Wednesday, my surgeon reversed course and closed his office. I was told all surgeries were cancelled - which we have all heard.

I called several endocrinologists and none are taking new patients, I assume the "no surgery" thing is also the case with endoscopy.

The day after the surgeon cancelled it finally clicked in my mind, "this stomach thing, if real, its gonna be inoperable and I'm done".

Eventually I was able to reach my oncologist in the trial. I stated flatly "I can't get the biopsies, the stomach would be inoperable, I need to be unblinded and put on the combo immediately".

To my dismay, joy, surprise and lack of surprise the MD quickly agreed and said he would submit an emergency unblinding request to BMS.

In a way, when biopsy became unavailable, it has only accelerated the timetable to get to re-treatment. We are going on the "best evidence available" now which is only the PET CT.

The decision to "risk uneeded treatment" if the biopsies came back negative is easy in my mind. I am awaiting the unblinding decision this weekend. I'll finally learn by BRAF status too.

So, I feel I am on the right course, and perversely this may work in my favor.

I'm just putting this out there to see if others with my bad timing are getting biopsies done. For our beloved expert panel; "do you have any other insights given this - hopefully fairly singular - set of facts?"

Thank you, be safe.

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marta010's picture
Replies 2
Last reply 3/28/2020 - 9:58am
Replies by: gopher38, Bubbles

My husband Larry, had his 6th gamma knife on Tuesday.....boy, are brain mets persistent. We're very thankful that he wasn't exhibiting any Neuro symptoms and that his team was able to get him in for treatment quickly. This met was new but near an area where he's had two prior gamma treatments and two brain surgeries. Hope this is the last time we need to deal with this area. This was not the way we wanted to celebrate his 8 year "anniversary" but what can you do! Stay safe and our of harms way!
Ann

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gkersey's picture
Replies 2
Last reply 3/27/2020 - 8:30am
Replies by: Edwin, BillB

Hi. My name is Gail. I am a 55-year-old female. I was diagnosed with melanoma in 2017. The surgery was successful with no treatments. I have just been diagnosed with it again. I need to know what can I eat or drink before my PET Scan? I am hypoglycemic and need to make sure I keep my sugar up the day of the scan. Thank you for anyone who is willing to reply.

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Dear MPIP Community:

I wanted to let you know of an upcoming webinar with two amazing melanoma experts coming up next Tuesday, March 31 at 10am ET. This will be a live webinar with time for Q&A. If you can't make it, don't worry...we'll post the webinar on our website shortly afterwards, and you can submit questions to me at education@melanoma.org and our speakers will try to address them! 

Best,

Shelby - MRF

 

 

 

 

 

 

 

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Bubbles's picture
Replies 1
Last reply 3/26/2020 - 4:08pm
Replies by: caman

After yelling about it for the past TEN years!!!!!!!!!!!!!!!! - I am so glad that more and more effective adjuvant therapies (treatment given when all signs of gross melanoma has been removed either by surgery or radiation) are available for Stage III and IV melanoma patients!!! Still, it can all get pretty confusing real quick. So - this morning I put together a post that tries to pull it all together. It begins with links to the PRIMER I created that covers all current treatments for melanoma and a glossary of terms as well an article that pretty much does the same thing. Next, there is a written story of the development of adjuvant care in melanoma with pertinent links. It concludes with the story in visual form, via slides and link to a presentation made by a world renowned expert in melanoma. I hope it helps.

Here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuva...

Wishing each of you my best and the joy of a beautiful spring day no matter where you are. Yours, celeste

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Rob is grateful's picture
Replies 12
Last reply 3/30/2020 - 3:24pm

Hello friends, I was recently diagnosed stage 3. I had a primary tumor that was 1mm with ulceration. My surgical oncologist, the medical oncologist and of course I were very surprised that 2 of the lymph nodes came back positive. They pulled 5 sentinel node and 1 had .2mm and the other a 3mm tumor that both were still encapsulated. My dermatologist ordered a test from castle bioscience that showed I was a 1a with least chance of recurrence. I go back on April 22 for all of my scans and discuss treatment. I’d love to know how people managed to get over the initial shock and stress. I’m a positive person and I’m looking at this as just another hurdle. Thank you in advance for your replies and motivation. Glad I cam across this forum. There are a lot of negative statistics out there and I’m hoping they are based on old data and not showing the results of more recent breakthroughs. I hope everyone is doing well
I’m praying for all of us. Rob

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BrianP's picture
Replies 1
Last reply 3/25/2020 - 4:45pm
Replies by: ed williams

Not sure if this is old news or not. Looked back a little and didn't see anything on his MSK study.

https://www.cancertherapyadvisor.com/home/cancer-topics/skin-cancer/mela...

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sj's picture
Replies 1
Last reply 3/25/2020 - 12:32pm
Replies by: jennifer83

I had my WLE on January 17th and they patched me up on January 31st (scalp reconstruction and rotation, 55 staples). The wound opened up when the staples were removed and I have posted about it on here before.

About 3 weeks ago my scalp kinda hit a plateau. It just wasn't healing anymore, or had slowed considerably. A week went by and the wound really had not changed at all and was still leaking and bleeding.

Around 9 days ago I started lifting weights again, properly with no restrictions. And since then it's like the healing went really quickly. I went from a hole in my head to almost closed and the skin that has formed has feeling and sensation too. I expect it to be fully closed in the coming days.

I also found a paper from 2008 by the NIH that states exercise accelerates cutaneous wound healing in mice, so it may not be my imagination at all. https://www.ncbi.nlm.nih.gov/pubmed/18003791

Hopefully this helps someone.

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ScaredPartner's picture
Replies 5
Last reply 3/27/2020 - 10:32pm

Partner started a new phase 2B trial today. TGF Beta, combined with a PD1.
The required 3 week washout period was really hard on him. The targeted drugs had started failing hence the change to the trial, but once he completely stopped taking them the subcutaneous lesions grew fast. 3 weeks ago he was riding his bike for miles through Hawaii, and yesterday couldn’t make it from cab into hospital without assistance because of the pain.
After the pain was under control they went ahead with treatment one.
In hospital over night for monitoring as this drug is hard on the heart.
We are hoping for a miracle/miraculous science.
The idea behind this trial was that it was meant for people who for some reason had some progression within the first 12 weeks on immunotherapy, and to find a solution for that group of patients.
I post this in case anyone else is currently looking into this trial, and have questions about our journey to get there, or if someone has been through it in phase 1, and has any insight on the treatment. No results are posted anywhere yet. It just got approved for 2A (in Canada anyways) about 2 weeks ago
I hope my rattie is the on the way to a cure.
Best to all.

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caman's picture
Replies 5
Last reply 3/25/2020 - 10:32am
Replies by: caman, Bubbles, tkoss

Hi everyone, recently had my scan done which indicated a inflamed nobe on my neck, .8mm. The nobe was .6mm previous scan. Just visited with my doctor with the follow up and it felt palpable. He said it feels like tumor and needle biopsy is necessary. So now I need to wait a few days for the results. Just wondering how does he know almost for sure its a tumor by just feeling it. Very nervous right now just wondering anyone out there that had the same experience with the doctor. Also, I did have carotid surgery on the same side of my neck 2 years ago, almost same time I had my WLE done. The bump he felt today is right on the end of that scar caused by the carotid surgery where the sutures were made. Whats the chances the lymp node he thinks its now cancerous is exactly on that spot. That gives me a little comfort its not cancerous. But he tends to feel its probably stage 3 for me. Looking for some honesty and hopefully some comfort from anyone out there. Thank you everyone!!

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MelMel's picture
Replies 1
Last reply 3/23/2020 - 1:04pm
Replies by: MelMel

The following study looks at a newly developed test called Cauchy-Schwarz index of Neoantigens (CSiN) score which predicts more accurately which patients will respond better to immunothetapy than other current tests. Here is the link and short description including the abstract.

https://immunology.sciencemag.org/content/5/44/eaaz3199

Neoantigen Number Crunching
Immunotherapy with anti–PD-1 and other checkpoint inhibitors is an important cancer treatment modality, but improved biomarkers are needed to better predict which patients will respond. Current computational approaches that assess tumor immunogenicity by deep sequencing of tumor samples to count mutations and predict neoantigen epitopes are unable to factor in clonal variation within tumors. Lu et al. developed an algorithm to calculate CSiN score, a metric that also integrates the distribution of mutations among tumor clones. Testing of CSiN score against other indices of tumor neoantigen burden revealed improved correlations with outcome and prognosis in cohorts of patients with tumor types known to be immunogenic. Calculation of CSiN scores from tumor genomics data may assist in selection of patients most likely to benefit from cancer immunotherapy.

Abstract
Lack of responsiveness to checkpoint inhibitors is a central problem in the modern era of cancer immunotherapy. Tumor neoantigens are critical targets of the host antitumor immune response, and their presence correlates with the efficacy of immunotherapy treatment. Many studies involving assessment of tumor neoantigens principally focus on total neoantigen load, which simplistically treats all neoantigens equally. Neoantigen load has been linked with treatment response and prognosis in some studies but not others. We developed a Cauchy-Schwarz index of Neoantigens (CSiN) score to better account for the degree of concentration of immunogenic neoantigens in truncal mutations. Unlike total neoantigen load determinations, CSiN incorporates the effect of both clonality and MHC binding affinity of neoantigens when characterizing tumor neoantigen profiles. By analyzing the clinical responses in 501 treated patients with cancer (with most receiving checkpoint inhibitors) and the overall survival of 1978 patients with cancer at baseline, we showed that CSiN scores predict treatment response to checkpoint inhibitors and prognosis in patients with melanoma, lung cancer, and kidney cancer. CSiN score substantially outperformed prior genetics-based prediction methods of responsiveness and fills an important gap in research involving assessment of tumor neoantigen burden.

Happy reading.

Melanie

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Here is a study which looks at predicting who will respond best to immunotherapy

https://immunology.sciencemag.org/content/5/44/eaaz3199

Neoantigen Number Crunching
Immunotherapy with anti–PD-1 and other checkpoint inhibitors is an important cancer treatment modality, but improved biomarkers are needed to better predict which patients will respond. Current computational approaches that assess tumor immunogenicity by deep sequencing of tumor samples to count mutations and predict neoantigen epitopes are unable to factor in clonal variation within tumors. Lu et al. developed an algorithm to calculate CSiN score, a metric that also integrates the distribution of mutations among tumor clones. Testing of CSiN score against other indices of tumor neoantigen burden revealed improved correlations with outcome and prognosis in cohorts of patients with tumor types known to be immunogenic. Calculation of CSiN scores from tumor genomics data may assist in selection of patients most
likely to benefit from cancer immunotherapy.
Abstract
Lack of responsiveness to checkpoint inhibitors is a central problem in the modern era of cancer immunotherapy. Tumor neoantigens are critical targets of the host antitumor immune response, and their presence correlates with the efficacy of immunotherapy treatment. Many studies involving assessment of tumor neoantigens principally focus on total neoantigen load, which simplistically treats all neoantigens equally. Neoantigen load has been linked with treatment response and prognosis in some studies but not others. We developed a Cauchy-Schwarz index of Neoantigens (CSiN) score to better account for the degree of concentration of immunogenic neoantigens in truncal mutations. Unlike total neoantigen load determinations, CSiN incorporates the effect of both clonality and MHC binding affinity of neoantigens when characterizing tumor neoantigen profiles. By analyzing the clinical responses in 501 treated patients with cancer (with most receiving checkpoint inhibitors) and the overall survival of 1978 patients with cancer at baseline, we showed that CSiN scores predict treatment response to checkpoint inhibitors and prognosis in patients with melanoma, lung cancer, and kidney cancer. CSiN score substantially outperformed prior genetics-based prediction methods of responsiveness and fills an important gap in research involving assessment of tumor neoantigen burden.

Happy reading.
Melanie

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