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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Anonymous's picture
Anonymous
Replies 7
Last reply 11/6/2020 - 2:50pm
Replies by: kanewalt, Anonymous

I am a staunch believer in cannabis for helping with my Stage 4 w/lepto. So far brain and spine scans have been clean for quite sometime. I was diagnosed on 9/26/16, and was given two months. I'm still here doing well feeling good, and enjoying life. Cancer to me was beautiful, it taught me how to appreciate my life and the people around me. So oddly enough I refer to my cancer as a gift. To get down to brass tax. I take the BRAF combo, the Opdivo, and every night I take a 50mg CBD capsule from NYS Dispensary, along with a THC vaporizer from them as well. I have much success and I have stumped the folks at Sloan, I now want to take my "holistic" treatment to the next level. Has anyone gone through the whole Rick Simpson Protocol, I'm sorry if this is a reoccurring question however it's tough to sort through people trying to sell me illegal passports etc. Also if anyone was curious I'm the guy who got vitiligo on my parts from Opdivo. God Bless, Never Give Up and Fight the Ef on!

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Erica82's picture
Replies 10
Last reply 11/4/2020 - 5:12am

Hello everyone. My husband keeps having brain mets pop up over the past year. They treat them with SRS but I'm wondering which immunotherapy might be the best for crossing the blood brain barrier? He's been on Keytruda and Yervoy in the past for mets in the body (both were successful) but both treatments resulted in pneumonitis. We're tired of just waiting for new mets to show up in the brain only for them to be radiated and then wait for more. Does anyone have any insight about which immunotherapy might be most successful with helping brain lesions? (he didn't have any pop up while on either of the 2 immunotherapies before so they must have been doing something.....) He's willing to risk the pneumonitis again. Thanks- Erica
background- husband is 43 yr old male dx'd 4 years ago as stage 4, been doing well except for the recent brain activity


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Evan2027's picture
Replies 18
Last reply 10/30/2020 - 3:28pm

Hi all,

Dad completed his TOMO SRS schedule the 16th. He had a follow up with lead Dr yesterday and was given 3 options.

1. Get back on yervoy/opdivo combo in another 2 months. I thought it might start sooner since the radiation will be doing its thing and you want the synergy effect.
2. Try chemo therapy
3. Start Hospice

The dr said that the first two options are high risk/low reward (he already had a bout of colitis with ridiculous regimen of steroids from yervoy/opdivo). Dr also said the first two options are not guaranteed to work and would not be a cure. Should we get a second opinion? Haven't done so up until this point. We live in western Virginia so was looking at places around D.C.

The last option is the one I dread but see more likely as reality and would give him time to enjoy some of the things he would like to do. At first I thought the radiation might help more at this point but he is in so much pain, has trouble walking, and is fragile and has low memory retention. They just upped his pain killer meds which hopefully will help. I have gone back and forth between wanting him to keep trying and not pushing at all bc I'm asking him to continue to live with all of the pain. He is also tired and has made statements that he just wants to rest. I am very torn, crying pretty frequently, and not wanting to lose my best friend. I want to be able to let him go if he wants to.

Thankyou all,
Much love.

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THMoore's picture
Replies 3
Last reply 10/28/2020 - 5:28am

Has anyone experienced having their tumor ache on and off while taking the IPI/NIVO Combo? I have a tumor on my liver right below the skin. It has been aching on and off since my second infusion. Just wondering, I take my third dose this Tuesday.

Hugs
Trent

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Evan2027's picture
Replies 2
Last reply 10/27/2020 - 4:45pm
Replies by: Evan2027, hxcadam

Hello,

My father has been fighting melanoma since Fall 2017. Started under left thumbnail and very small amount in some lymph nodes in left armpit so i think it was stage III at the time. Had upper joint of thumb removed and a couple lymph nodes removed. No immunotherapy. in Fall 2018 detected more in his left armpit lymph nodes so he had surgery to remove all the armpit lymph nodes and was put on opdivo. Tolerated well but developed red spots on back of left arm around april/may. He was put on Opdivo/Yervoy combo and the spots almost disappeared after the first treatment, all went away and he had full course of combo. Developed colitis in September 2019 and was put on steroids through December. Doctor thought he was too weak to put on opdivo alone so waited 4 months between Jan - May 2020. They found a suspicious spot on his left lung in the May scan so they did another scan at the end of June and found that it was melanoma and size had doubled (still small). He also has skin melanoma on back of arm near left armpit. Dr put him back on Opdivo and he got 3 treatments. Had a bad fall early September and started to get back pain which we thought was from the fall. His pain continued to get worse and the last week of September he lost 10 lbs. Went to UVA to get a scan and they found stress fractures in some of his back vertebrae and left kidney was swollen. This past Monday they admitted him to the hospital and found that the lung melanoma had increased in size again but still small so plan was to do radiation on lung and surgery/radiation on the skin melanoma near his left armpit.

I probably got my hopes up way too much because i was reading about how radiation can help jump start immunotherapy sometimes so was hoping that would kick off the opdivo he had the last 3 months. Late wed in hospital they did full body MRI and results Friday morning were bad. About 1/4 the way up his back there are multiple small spine bone mets and one that is larger (not sure about size). Also has a couple very small spots in his neck spine bone.

He is starting 5 day radiation treatment this upcoming Monday to atleast help with controlling the growth of the tumors and hopefully to help with the pain. Of course i want answers now and am thinking about Post radiation treatment options or combo options. For now the focus is just on getting radiation for the spine and lung mets.

Sorry for the long rant but I wanted to give his history. He is 75 years old so I am worried that the Dr might not want to try treatments that have higher chances of side effects and bc of his age and recent weight loss. Also think he will be more limited with any clinical trials that are out there bc of age. If the radiation helps and shrinks or eliminates the mets and he gets some of his strength back should immunotherapy be considered? Should he try Keytruda instead of Opdivo? Can he get one or two infusions of Yervoy again?

I have been reading stories in this forum the past 2 days and they have brought hope and support in this moment. Thank you.

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/25/2020 - 10:20am

My husband is stage 4 but is currently not doing treatment. He's not had any treatments in several months. He's unable to eat very much and doesn't have an appetite what so ever. For some reason he's been gaining weight. We aren't sure what would be causing this and his dr's aren't quite sure either. He's not on any steroids or any medicine that has a side effect of weight gain. He tries to eat but has a lot of stomach pain so therefore he just doesn't eat due to that and the loss of appetite. Has anyone ever experienced this or know what would call the weight gain?

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Steve33's picture
Replies 7
Last reply 10/24/2020 - 10:45pm
Replies by: maryb-z, kfred0926, tkoss, Anonymous, Baby_Girl

Hi All,

Minor question regarding # of adjuvant Opdivo infusions for Stage 3 folks. I recently moved a crossed the country. My previous oncologist overseeing my Opdivo infusions recommended 13 infusions every 4 weeks to cover the full 52 week year. My new oncologist recommended 12 infusions every 4 weeks, but is ok with doing 13 if I prefer. The general feedback is it really shouldn’t make a difference and that benefits of immunotherapy don’t stop after the last infusion.

It’s approved by insurance for 13 and adverse effects have been minor so far, so I’m leaning towards just getting the 13th infusion. I‘ve always approached my melanoma as attacking it aggressively as much as possible in my treatment.

What have other Stage 3 people done? 12 or 13 infusions?

Stage 3B, Parotid Gland/ CLND, Opdivo

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TimCT's picture
Replies 13
Last reply 10/23/2020 - 4:35pm
Replies by: TimCT, hxcadam, Bubbles, gopher38

Has anyone been on this therapy? It looks to be the way I'm headed. My doctor says that it was recently approved by the FDA, the concern will be getting insurance to pay for it.

I started with ipi/nivo and after a good early response, I've progressed. Because of the virus, the intralesional trial he wanted me to enroll in didn't open in time, and the amount of progression I've had has pushed us towards needing to do the BRAF inhibitors. But he wants me to stay on the nivo, because of my early response and some vitiligo that has shown up on my arms. He's hopeful that the BRAF inhibitors will work in the short term and the nivo will work in the long term. I had a nivo infusion yesterday, and the Braftovi/Mektovi should be delivered this morning. Another infusion scheduled for 9/17.

There doesn't seem to be a lot of recent info out there. Curious if anyone on the board has any experience with it this therapy. Thanks!

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LB in Seattle's picture
Replies 2
Last reply 10/23/2020 - 4:13pm
Replies by: THMoore, gopher38

Anyone else here who had their primary on their vulva? Mine was on my left labia minora; considered a dermal lesion. This is a rare primary location (and I have had a local recurrence in the lymph nodes recently, but my doc says that this does not constitute a metastasis). I am curious to find other women who've had their primary site there. Having the discussion about immune therapy in two weeks now that I've had the recurrence after a year and a half of clean scans. I found the enlarged lymph node about a month before the next scan would have been scheduled.

I am also a daughter of a parent who died of melanoma. While this suggests a genetic cause for mine, testing revealed no known genetic markers. So if you've had this primary site, any chance you had a parent with melanoma as well?

Thanks for any responses.

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Replies by: Bubbles, AMcReader, gopher38

So we traveled to Salt Lake to the Huntsman Cancer Institute which we've gone to before for his other two cancers. We saw two specialists that only work with Melanoma, an oncologist and a surgeon.

This is what we were told, some of which I'm sure most of you already are aware of from personal experience, but I'm putting it in the words they told us:

So, if we do NOTHING he has 6 months or less for a prognosis.

There are two pills that they want him to take together, Dabrafenib and Trametinib. He'd take them twice a day. The purpose of these pills is to break down the protective barrier of the tumors so the white blood cells can then swoop in and try to do whatever they can do to fight the cancer. It also helps to shrink the tumors a great deal and in some patients make them go away. HOWEVER, this pill is not a long-term solution. Even if they make a tumor go away the tumors will eventually return. The pills typically plateau in effectiveness at round 8 months. And we should know if it's working within the first 4 weeks or so of initiation. It is said to work in about 80% of patients who carry the B-Raf biomarker (which he does). If it works it could potentially give him up to 1-2 years. Even if the next step doesn't work. If the pills don't work then it's clinical trials from there.

If the pills work we go to the next step which is to discontinue the pills and go onto a different immunotherapy than what he previously had. The percentage of success for this step is about 30%. So not great odds but it is something. If it works, he can potentially be on it indefinitely for years to come. If not, we're back to square one and he would then go on some clinical trials (essentially a last ditch effort when nothing else can be done.)

So basically, everything is dependent on this next month if these pills work or not.

I have read the replies to my previous post, and thank you SO much to all those that left me some kind and encouraging words. It really means a lot and helps.

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sks2019's picture
Replies 4
Last reply 10/21/2020 - 10:57pm

providind anpther update on my , she was admitted into ER on Sept 14 with organ failure , kidneys had shut down and doc told us its going to be only few more hours and we shouldnt go for ventilator and dialysis to support her. I coudnt let her go , I wasnt prepared for it. I asked them to put the ventilator and dialysis. Today Oct 19 she is stll in hospital but dong much better. Blood work looks in normal range ecept for ALT , ALP number which are 3x than normal. Her kidneys have come back and she hasnt needed dialysis or 1 week now. Doctors think she doesnt needs dialysis anymore.
She is very immobile and cant lift a glass of water so needs continous support. The team is now talkig about options
1. Re-challenge temodar which they think caused tumor lysis for her and brought her into ER . She will need hospital stay ( which is already taxing on her ) and doesnt buy her much time.
2. Hospice

I am not sure what to do , I am only taking one day at a time and working on gettting her feel better and feeding her to gain some strength.
How does the end looks like , its so hard to see this suffering.

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TinkPeriwinkle's picture
Replies 8
Last reply 10/20/2020 - 8:54pm

Hello,

A little backstory:

My husband was diagnosed in Dec. 2005. Initial mole was on his L scapula area. A wide excision on L scapula was performed as well as a lymph node removal of a small sampling under his L axilla area which came back negative. He received two rounds of injectable radiation and that was it. His initial staging was Stage II B. He went into remission.

Fast forward to April of 2016 and he was diagnosed with Non-Hodgkins Extranodal NK T-cell Lymphoma Stage III. (Melanoma has been linked to Lymphomas.) He received intensive, around the clock chemo for 8 days, x2 as well as 240 rounds of radiation thereafter. Has been clean of lymphoma since.

Fast forward to 2020. Was diagnosed back in May/June with Melanoma stage III B when a tumor showed up under his L axilla (the original site of the removal of a few of his lymph nodes in 2005). Wide excision of the L axilla was performed as well as a total dissection of all lymph nodes in that region. Monthly IV Immunotherapy using Opdivo was started in July and my husband had received 2 total doses of it when it was noticed very quickly growing masses in the same L axilla region. Biopsy revealed Melanoma. MRI of brain and total body PET was performed. MRI was clear, PET showed my husband now has 14 areas of metastasis including 2 spots in his liver and 3 spots down his spine. He is now an aggressive stage IV.

Immunotherapy has been discontinued and we are awaiting some medication in the mail that will supposedly help prolong his grim prognosis. Apparently he carries the right biomarker that is receptive to this medication. We are also seeking opinions from Huntsman Cancer Institute in Salt Lake City (where he was previously treated for his first two cancers). We currently live in a very remote part of the NW corner of Montana. We arrive to SLC on Tuesday night. His appointments are on Wednesday the 14th.

Seeking guidance and support from those who understand. I am 44 years old, an OB RN, a mother of 5 children we share together, married 21 years this last march. I am about to lose the love of my life very soon. At 43, he is much too young. I hope I can find someone out there who knows what this is like.

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Baby_Girl's picture
Replies 2
Last reply 10/19/2020 - 10:00pm
Replies by: Baby_Girl, Daisy2018

I was originally diagnosed stage 3 in January 2019. After surgery I did a year of Opdivo. I have been NED. I recently had my routine pet scan. The doctor said there was no evidence of metastasis. But there was some activity in my ovaries again but most likely due to my PCOS (polycystic ovarian syndrome). So I was happy about the ‘boring’ scan. Well the scan report was just posted in MyChart.
This is the impression that was reported:

Study Result
Impression
1. No definitive evidence of active residual malignancy.

2. Small bilateral ovarian cyst are again seen, larger on the left. There is now diffuse hypermetabolism throughout large bowel which is likely physiologic. Activity now overlies the left ovary level of cystic region measuring up to 2.4 cm and more likely represents misregistered activity from bowel. However, it is somewhat higher level and localized over the ovary and activity from the ovary cannot be entirely excluded. If this is from the ovary, it may represent activity associated with physiologic cysts. Malignancy would be felt unlikely. This can be evaluated on follow-up imaging.

3. Again, prominent palatine and lingular tonsillar tissues with a hypermetabolism could be reactive or inflammatory/infectious in etiology.

So my concern is what was seen around my ovaries and large intestine. This is what was also written in the narrative part of the report:

ABDOMEN / PELVIS SOFT TISSUES:

There is physiologic activity throughout the abdomen and pelvis within liver, spleen, GI and GU system.

No abnormal soft tissue metabolic activity is seen to suggest malignancy.

No enlarged or abnormal appearing lymph nodes.

No solid organ lesion is seen to definitively suggest malignancy. Again, small bilateral ovarian cyst, on the right measuring up to 1.6 cm and the left 2.0 cm. There is hypermetabolism overlying the left ovary, but may be misregistered activity from adjacent large bowel. However, it overlies specifically the ovary at the level of the cyst and a region measuring up to 2.4 cm and has SUV max 9.5. Activity otherwise within adjacent bowel has SUV max 6.8.

No hollow viscus lesion is seen to suggest malignancy. There is moderate to intense hypermetabolic activity seen throughout much of the large bowel on current exam.

No free air or fluid. No retroperitoneal air or fluid.

So now I am a little concerned and just wondering what others think. Is this something you would be more concerned about? Could it be melanoma? Another type of cancer? Nothing? My next scan is in 5 months. Should I request another scan sooner?

Thank you!

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caman's picture
Replies 4
Last reply 10/19/2020 - 7:05am
Replies by: tkoss, THMoore, caman, Bubbles

This held very true with me. Eosinophils climbed higher and higher with each Keyruda dose and I responded very well. Wonder if anyone else here experienced this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7028332/

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Fortysomething's picture
Replies 2
Last reply 10/18/2020 - 6:04pm
Replies by: mrbill16323, tkoss

Hi forum
Let you know my slnb came back clear which means I can move on,in what has been a challenging year. Will still have slight worries as it was done 4 months after I had my wle removed from back(12cmx4cm).Hoping they got the right lymphatic channel,will now follow up with 3 monthly appointments for 3 years and 6 monthly appointments for another 2.
Thanks so much for your helpful and supportive advice,it really has helped.
Regards
Thankful
Andrew

Take care everyone

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