MPIP: Melanoma Patients Information Page

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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I am very new to this. Can anyone explain to me deference between BRAF positive and non-BRAF mutation. Is there any difference in survival rate or reoccurrence? I’m stage 3a and no treatment was recommended by either my oncologist or Dr. PaulChapman from Solan Kettering. I apologize for all my anxiety. I understand that there are people on this forum with much more serious issues.

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SOLE's picture
Replies 2
Last reply 7/23/2019 - 12:51pm
Replies by: Becky, Bubbles

Don’t know if this is already known here but there it is: HOPE FOR MUCOSAL MEL

https://t.co/pZpDridmEw?ssr=true

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JulesFout's picture
Replies 1
Last reply 7/23/2019 - 9:02am
Replies by: Hukill

Hello! I am looking for anyone who had side effects from yervoy /ipilumimab. I was diagnosed with vulvar melanoma back in fall of 2017. I had 2 lymph nodes removed. I am considered stage III for treatment, but had a couple of scares of it entering my brain and lungs. The brain nodule has resolved and the lung nodules may be from adverse side effects of yervoy. They have not made a complete crossover to stage IV. We will see how the next few months go.
After my first 2 rounds of Yervoy my liver enzymes went very high and we had to stop treatment. I got many infections and had a very rough year. It is 2019 and I now battle asthma. Not sure what all happened to me. They sent me to a cardiologist, pulminologost, gastroenterologist, endrconologist etc... I haven't been hospitalized, but made several ER visits due to symptoms that could involve lungs or heart. ER always send me out with everything non-life threatening, however I would like to know what is going on and if this is long term. Anyone out there still battling long term side effects from Yervoy /ipilumimab. All the sickness and fatigue has caused me not to be able to work full-time. I am now 35 and a teacher. I would like to get back to it.
I am now on a BRAF inhibitor tafinlar /debrafinib. It has it's own issues.

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MelanomaMike's picture
Replies 5
Last reply 7/23/2019 - 11:02am

Hi guys, screw it, i was gunna wait to just see him and Beg, Kick & Scream for that referral (wich i still may do!!) But, i wrote him thru my Kaiser app, the message system works great and i should get a reply soon, i told him straight up, i want a Mel Spc, wouldnt he want a Mel specialist if the tables where turned? Lets see, maybe it can happen sooner...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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MelanomaMike's picture
Replies 2
Last reply 7/31/2019 - 7:01pm
Replies by: MelanomaMike, MovingOn

Hi guys, anyone know about our Mel peeps MRF name "Khubes" (Katie, the wife of Mel patient) and MRF name "MovingOn" (forget his name)???? I haven't seen posts since early April of this year, did I miss anything? Did I miss a post? Please reply if anyone knows what's up with them....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Ellenb626's picture
Replies 4
Last reply 7/23/2019 - 5:13pm
Replies by: Suzana65, Ellenb626, Bubbles

I am new to this website. I read it a few times before posting my info. so here goes. i went to the dermatologist in May 2019 and had a melanoma removed from my upper left arm. The pathology report came back said it was stage 2b. In June, I had surgery- wide excision to remove the melanoma and a sentinel node biopsy. The first sentinel node was removed and it had 6mm of melanoma in it. I was sent for a PET scan and CT scan of my chest. I am NED. My melanoma then became 3b. Then the surgeon at MSK sent me to the oncologist who talked about the pros and cons of immunotherapy. At first, I was leaning towards immunotherapy. but now I am having seconds thoughts because of the side effects. I am on Synthroid and I am afraid that my whole endocrine system will get messed up. The onocologist said it would be one drug or two drugs but he didn't say which ones, just every 4 weeks. Some of the really bad side effects scare me and my husband. I want to know if just using scans is sufficient monitoring and immunotherapy can be put off until something shows up,

Ellenb626

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Jewel's picture
Replies 2
Last reply 7/25/2019 - 11:11pm
Replies by: Indymom, MichelleRHG

Hi ,

After 4 years of success on IPI my husband had a recurrance in a Lymph node. IPI/Nivo is being discussed. I'm curious how everyone made out with approvals? My husband just turned 66.
Thank you,
Jewel

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Sabrina Matchulat's picture
Replies 6
Last reply 7/31/2019 - 7:09pm

My husband, Pete, now 61, was diagnosed with Stage IV malignant melanoma in February 2017. He had a huge lymph node removed from his right neck region along with 33 other nodes which were clean. This surgery took place at MD Anderson in Houston. In July of that year, after recovering from surgery, a PET scan revealed a lot of growth: Spine and brain mets, mets to hip bones. He underwent some local radiation to the neck and then targeted radiation to the brain mets at the base of his skull. He then started on Yervon/nivolumab and progressed to just nivolumab. He tolerated his immunosuppression fairly well. Main side effects have included itching, fatigue, a "foggy brain" and some sporadic morning nausea but so far his PET scans have revealed no progression. Doc doesn't know how he walks with the spine in the shape it is and recommends lifting "nothing heavier than a jug of milk" He is stubborn, however, and continues to "work out" daily (although not to the extent that he did before all this). I know this has really helped with his physical and emotional strength. Bottom line, he is coming close to the two-year mark of immunosupression. A success story for sure! He We are very thankful to have come to this point. Soon will be the two-year mark and he will make a decision to continue or stop the therapy. There doesn't seem to be clear-cut evidence one way or other, although the oncologist recommends continuation..

This month the insurance denied doctor's request for a PET scan on the basis that the brain MRI and past PET scans have not changed.. Doc is recommending a bone scan/CT instead but this will very different than the PET scan so he wanted to go over the interpretation with us after it is done.

Just wanted to get his experience out there to give others hope who are immunosupression - we do certainly believe it saved his life! (oh, and PRAYERS)

Sabrina

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Beverly's picture
Replies 6
Last reply 7/25/2019 - 12:07pm

Bubbles, et al...

I posted a topic on 7/19/19 on my Stage 3B situation regarding questions/thoughts on immunotherapy months out from surgery. I received some responses from some wonderful folks so far like MelanomaMike, Mark_DC, and DoubleTT. Thanks so much to each of you! My apologies in advance if protocol is to not re-post on the same topic. I would love to hear from Bubbles/Celeste, Ed, and any others who have been on this Board. I mention Bubbles/Celeste and Ed specifically only because I am most familiar with their story and input for so long, fighting the fight for so long, and so selflessly continuing to give and help others. I, by absolutely no means, want to seem like I trivialize all of the other wonderful people on this forum. I would love to hear from more brave warriors.

If you wish, you may go back and read the original post on 7/19 for more details and questions. But in a nutshell, I have Crohn's (DX 3/2016) and I am exactly 5 months out from surgical re-section to remove an in-transit melanoma on lower right back (no lymph nodes involved at time of PET scan in March). But Stage 3B because of being In Transit. First melanoma DX 12/2013 (surgery 1/2014). Tested 3/2019 and BRAF positive. Started Taf/Mek combo in late April, ended up in hospital for one week after about 3-ish weeks on the meds. Had to stop the meds right before hospitalization. While in hospital, was told need Crohn's surgery. Went home for a week. Back in hospital on June 3 for that surgery and in the hospital for a week. (Crohn's surgery was already in my future, but not anticipated for about another year). Anyway, they did a temporary stoma. The stoma was put in place to delay recurrence of the Crohn's around the area of the intestine that was removed and hopefully allow me to do immunotherapy without the meds causing problems with that. My oncologist and Crohn's doctor and surgeon had consulted on this previously. However, I needed my intestines to heal for at least 4 weeks before I could start any immunotherapy. Fast forward to now about 6 weeks out from Chrohn's surgery. Met with oncologist on 7/10 and she could not say whether immunotherapy would provide any benefit or not this far out (which is 5 months+) since all the studies/trials were at 12 weeks of surgery. She tried for another PET scan to make sure still no cancer and have baseline for starting immunotherapy if we went that route. PET was scheduled tomorrow but insurance denied. No surprise there. Not sure yet if she will try Peer to Peer or put in for a CT instead. I've been through this tupe of thing before and I know a peer to peer would not help. So likely a CT. Anyway, by the time a CT is done and trying to get insurance approval, etc. for immunotherapy, it could potentially be 6 months since surgery before starting any immunotherapy.

Should I try it at this delayed timeline? Could there be benefit? Could 2.5 weeks of Taf/Mek combo eradicated anything if there were microscopic cells floating around? Am I at a higher risk of severe side effects because I had them on the Taf/Mek combo? What would you do if you were me?

I want to try because I'm scared to just "watch and wait" but I'm also scared of potential side affects given my history with the Taf/Mek. If the melanoma comes back, it could be at the next Stage (this is my 2nd time with it - albeit 5 years apart) so that is concerning.

Also to consider is the whole original reason behind the temporary stoma was in anticipation of immunotherapy. If I don't do immuno, then if I chose, I could have reversal surgery to reconnect intestines and get rid of stoma as early as October. If I do immunotherapy, I would need to wait until a time period after completion of immunotherapy. While I absolutely do not like having this stoma, I would rather have that than the melanoma obviously. So I shouldn't muddy the waters about the stoma and just focus on immunotherapy or NOT at 6 months out from melanoma surgery.

This is so overwhelming. I know there are many others currently struggling or have struggled more than I am, and I pray for each and every person who is fighting the fight. Thank you so much for reading my long story. Sorry it wasn't a "nutshell" !

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Happygal's picture
Replies 1
Last reply 7/22/2019 - 9:45am
Replies by: Bubbles

I just recently finished WBRT. I have been having a lot of "glitches " I forget to put down whatever is in my hands and try to do things with it in my hands. I forget to take off my clothes and try to put on more clothes. I forget to flush the toilet, which is a pet peeve.
Does anyone else that has gone thru WBRT have any information on this?

Thank you,
Tyais

Tyais

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p4plus2's picture
Replies 1
Last reply 7/23/2019 - 2:06pm
Replies by: Ellie_82

Within the last couple days I noticed a spot hurting on my foot after showing. I took a look and one of the moles i've had for years had changed -- not good. Now its the weekend so of course no dermatologist is open, so that doesn't help much. Needless to say, this has sent my anxiety through the rough to the point where I took my first personal sick day at work. The spot is still relatively small, around 3mm but almost vaguely looks like it has skin color "scar" tissue creeping away from it. The spot also still feels pretty thin when I run my finger over it (hard to measure but i'd feel confident saying its raised less than 1mm). My last full skin exam was a bit over a year ago and the dermatologist made no mention or notes of that mole (but I know he did look at it at the time). Here is a picture of the spot https://i.imgur.com/1KCl9cm.jpg As a side note, I can't find any unusual bumps that would indicate a swollen lymph node (though my knowledge on where lymph nodes would be in the foot is minimal).

I think I worry the most as i've had some other symptoms over the last two years, particularly abdominal pain. But I had an abdominal CT scan, ultra sound, and colonoscopy all which showed nothing unusual. So its also probably that the two are unrelated entirely. my last blood work about a year ago came back pretty good (only low vit D, but as somebody who works late/overnight this isn't too unexpected...). At this point its hard to distinguish anxiety from actually related.

I know the people on this board are mostly other patients and not qualified to "diagnose" or anything of the likes, but many of you have had experiences and I'd prefer honest opinions and advice. I live in the norcal bay area, so if things turn for the worse, does anybody have familiarity with facilities to recommend around here? I'm still pretty young being only 27, but I lost my mom to colon cancer less than two years ago and quite frankly pretty spooked. I'm hoping to squeeze in an appointment on Monday if I can though. I'll certainly post an update once I have those results....

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MarkR's picture
Replies 7
Last reply 7/23/2019 - 2:10am

I’ve just got back from a weekend camping with a very red face.
I spent Saturday outside on a fairly cloudy day in England in the type of weather where I wouldn’t normally bother with suntan lotion. Part way through the day I felt my face was warm and my wife commented about it so suntan lotion applied by too late. The reason I mention this is having looked at my face the redness is only in certain places (forehead, nose and part of cheeks) and the rest of my face is the normal colour and appear patchy. When I mentioned this to my wife she said that she thought my skin had looked a bit patchy for a few months and thought I had previously applied suntan lotion poorly causing this patchiness!!! We were with some friends one of which gets sunburn if she looks at a candle for too long so the sunburn iI now have seems a bit unusual.

I was wondering if this might be the start of Vitiligo and wondered how this started for other people?? As best i can tell this is only on my face - i have had a few grey eyebrow hairs recently but am going grey anyway so don’t know if that’s relevant or not
Thanks
Mark

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Carlsbad317's picture
Replies 4
Last reply 7/21/2019 - 7:11pm
Replies by: Carlsbad317, Bubbles

The last Ipi/Nivo infusion was June 7th, last radiation was the first week in July since then gradually have felt better, less trips to the restroom, firming stools, not as cold and not shaking, less swelling and more energy! Almost feeling among the living again! Woke up two days ago noticed the swelling and all symptoms/side effects have returned just like I had a treatment a week ago.
Anyone else experiencing this and an explanation? In my mind I am thinking since the treatment continues to work - it is the body fighting or sound something more to fight so it has kicked in...
Thanks for sharing.

Hanlon

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/28/2019 - 1:39pm
Replies by: Anonymous, Lucas

Hello,
My mother got diagnosed February 2018 with stage 3 melanoma. It began on her heel and traveled up to her inner thigh. She got a huge chunk of her heel removed and she got many lymph nodes on her inner thigh and upper leg removed through surgery. As she was recovering and all seemed okay, a scan showed there was some melanoma on her leg still. She underwent another surgery for that and shortly after began radiation therapy for her leg. After she finished that, she started immunotherapy. My mom was continuing her recovery and continuing her biweekly therapy sessions up until a couple of weeks ago. Unfortunately the melanoma came back on her heel and another scan showed it traveled to her abdomen area. Around the same time my mom started to notice pimple like marks on her leg spreading and growing. It wasn’t until her doctor did a biopsy and confirmed it was melanoma as well. She just got surgery on Thursday to remove the lymph nodes by her abdomen. Now we will wait 2 weeks until she heels so the doctor can set up a plan of care to target her heel and her leg. The concern is that her pimple like marks are growing more and more and it’s difficult to treat as they are under the skin and too small to appear on a scan.
My mom got very unlucky as we thought everything seemed it was going well.
I guess what I want is reassurance that there’s people out there who have been through this and survived. Is there anyone out there who had something so complicated as this? This is the scariest situation I’ve been in and I’m hopeful my mom will get through this. It’s just a very difficult and upsetting. I just need to hear other stories to feel stronger. It’s been a rough ride.

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MelanomaMike's picture
Replies 15
Last reply 7/22/2019 - 10:54pm

Well, Hurdle # 3, Referral Denied and i get the reason why, the Review Board guy i spoke with said to me because my Onco didnt file it and that " I" did it through Kaisers Member Services, it doesnt hold weight without a treating physician co-signing it, i have a Plan C though, since i stopped working, (i had Kaiser thru my job since 2003) when i left, i signed up for our Medi-Cal program "LA Care" (Calif's State/Fed health program) wich had Kaiser and a few other health providers, i obviously chose Kaiser so i could keep my same account, team and treatment. According to Dr. Hamids coordinator he takes straight Medi-Cal so, worst that could happen, i can stop Kaiser and ask to be on "straight" Medi-Cal, the only thing is, to transfer back could take time, maybe i can get it expedited cuz of my health. Ill call Monday morning to find out my options, i really want Dr. Hamid to treat me! That other doctor, Dr. Jang (the Kaiser Onco im to consult with Aug 15th) is not a Mel spc. and hes to far away if im to have supportive visits during "his" inpatient treatment, that alone is a deal breaker, i wanna feel good about inpatient treatment!!!..Am i being to picky at a crucial time? Im just so confused at this point, it makes me sick....any advice or knowledge about this would be appreciated ...
Hope ya all are having a relaxed weekend!

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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