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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jennifer_s's picture
Replies 1
Last reply 8/28/2016 - 10:42pm
Replies by: BrianP

My 48 yr old twin sister has been fighting melanoma intensely for the last year.  She still has several tumors in various locations, which after her last bout in April with recovering from Steven Johnson Syndrome due to a new immunotherapy, have begun to grow again.  We are still waiting to see what is going on with her liver (spots) and possible mets to the brain (again).  She is otherwise incredibly healthy!

She has asked me to do some research about mistletoe infusion therapy, so if anyone has even heard about this, has any experience with this, good or bad, I'd welcome your feedback.

On a personal note, I'd also be curious to see if anyone else has been in our situation: identical twins, one with cancer, one without.  It's incredibly difficult to see my sister going through this, and if it was any other disease, we could just switch out parts and she'd be fine.

Thank you for reading this, it helps to see how supportive everyone is, and how many people have not quit and even beat this.

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JoshF's picture
Replies 2
Last reply 8/28/2016 - 10:59pm
Replies by: Aaron, Polymath

Hi Guys-

I've seen some posts recently about fever and ipi. This is something I've been experiencing for tha pst couple weeks...right after 3rd dose. Typically it's a low grade fever, sometimes I get chills & sweats. I saw my onc on Thursday and mentioned but she wasn't concerned at this point as inflammatory responses are uncommon. Anyone have any insight into this? While I'd love to think it's a strong immune response, I'm also concerned. Today was worst day yet...

Josh

Let's work for better treatments....for a cure!!!!

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jamieth29's picture
Replies 10
Last reply 8/28/2016 - 10:53pm

Just wanted to say Hi to everyone and ask for some thoughts. Tuesday is the big day and I'm scared sh*tless. I've been keeping up on the board and been thinking of everyone having there own struggles and bumps in the road. I will post again with results wed. I have had a nice last 2 month vacation from this crap. Just hope taf/mek keeps working. Was on it 4 months last year and 4 this year. Feel like a clock is ticking though.

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Patrisa's picture
Replies 2
Last reply 8/28/2016 - 9:34pm
Replies by: JoshF, landlover

Hello everyone,

I just wanted to share some great news, to maybe bring hope and some positive news to this forum, I think we all need it...

My dad had his 6 month scan and he is almost NED... Almost because his biggest sub met has some low SUV uptake, but the doctor said its probably some 'repair' process, but can't say 100% NED, but close to it as possible...Everything else is completely gone... We feel so blessed...

He has been on Keytruda for 10 cycles and is doing great (some minor vitiligo on his face and some fatigue - not noticable in everyday activity, just when excercising or hiking)... No other side effects, which is great...

Anyway, keytruda is the first treatment he received after progressing to stage IV, so after seeing these amazing results we really have become believers...

We just hope the response is durable....

take care my friends and hope your chosen path delivers just as great results!

Love,

Patrisa

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PFritz's picture
Replies 3
Last reply 8/28/2016 - 5:58pm

I truly truly hate the feel of all sunscreens, lotions, moisturizers so it really stinks that they now need to be in my everyday life! Does anyone have good recommendations for sunscreen, moisturizers/lotions with SPF (for days when not in sun much like work days), and makeup? Also any recommendations where the products don't have "bad/cancer causing" ingredients? I know Zinc products are recommended does anyone have experience with products with zinc that don't make you look like Casper? Thanks!

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/28/2016 - 10:02am
Replies by: ldub, debwray

Hi everyone. I am new to this forum. This week I was diagnosed with Melanoma after watching a very small change on my leg over some time. I am glad I got it checked out, as my GP didn't think it would come back as anything. My diansosis after the initial encision is Melanoma In Situ (no ulceration) supervening on active regressing compound melanocytic naevus. I was told this is good news as it is in situ. My concern is that on the report it states that the tumor was found in the top layer of the skin extending to the granular layer. it states however "in the papillary dermis most of the change comprises of an infiltrate of lymphocytes and melangophages with a small number of bland naveoid melanocytes. These changes represent active regression in a melanocytic tumor. There is no ulceration. Deeper levels wer performed which confirm the changes discribed.". This has me worried as there has been regression. Does this mean that they can't actually determine how big the melanoma was as it may have started to regress? Are they able to be sure it is insitu in this case? I am terrifed. I have been referred to a dermatologist who I see in two days to see if I will need a wider excision as the margin is only by 0.3mm at present. 

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Sflynn's picture
Replies 18
Last reply 8/28/2016 - 9:42pm

Good evening everyone... 1 year to his diagnosis, I lost my husband to this terrible this disease on Thursday 8/25.  He was only 50. I pray everyday that a cure will be found. I am left to pick up the pieces at only 40 years old with a 16 and 19 year old. It's not fair. 

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Anonymous's picture
Anonymous
Replies 7
Last reply 8/28/2016 - 1:40pm
Replies by: jennunicorn, Anonymous, MoiraM

I keep seeing situations where stages I and II patients end up with stage 4 years later. Other than self checks and dermatology appointments what are things like signs or symptoms we can look for? Without any kind of treatment we are just left to play the lottery with this disease. Any information is appreciated while doing this watch and wait stuff. 

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stotes's picture
Replies 14
Last reply 8/28/2016 - 7:53pm
Replies by: BrianP, Polymath, Ed Williams, desertsun, Bubbles, stotes, Anonymous

Just wanted to reach out and hope to hear from others dealing with Stage IV as I am devastated and heartbroken.  First diagnosed as Stage 1A on L thigh in Feb 2008 and had wide excision wih no other treatment.  Almost exactly eight years later found a lump in L groin and found to be metastatic melanoma.  Had all superficial inguinal nodes removed and three were positive for melanoma and extranodal extension.  Had radiation to that area and started Yervoy at 3 mg dose in adjuvant setting (Stage lllC).  After first dose of Yervoy found a lump on right upper back but negative for melanoma.  Had two more doses of Yervoy and the lump grew back and is now testing positive for melanoma.  Awaiting PET scan on Monday.  I am BRAF negative.  I am completely devastated by how quickly I progressed from Stage lllC to Stage lV while on Yervoy.  I live in South Dakota and have been fighting insurance to get a second opinion but have been denied.  I don't have access to top melanoma specialists and feel desperate for some advice about what to do next.  I just feel like I have had the worst case scenario at every turn this year and I am terrified to find out what the upcoming PET will show.  Any advise will be appreciated - thank you!

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rabbits68's picture
Replies 1
Last reply 8/28/2016 - 8:33pm
Replies by: Anonymous

I have been on MEK combo for 16 months and my last scan was in April and showing regression of tumors. This past week I have been having low grade fever and body aches, I haven't had this but one time when I first started meds. The pharmacist said it was rare that people development side effects this late on the meds. Does anyone have any experience with this? Or if it stopped working for you, how did you find out. My next scan isn't until April and I am concerned we shouldn't wait that long. I appreciate any feedback you can offer.

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keepthefaith11's picture
Replies 5
Last reply 8/28/2016 - 9:35pm

Eva, been thinking about you wondering what decision you made about treatment. If you see this, let us know how you are.

Annie

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Nikkib's picture
Replies 6
Last reply 8/28/2016 - 10:53pm
Replies by: Cindyrandy, debwray

Hi everyone. I am new to this forum. This week I was diagnosed with Melanoma after watching a very small change on my leg over some time. I am glad I got it checked out, as my GP didn't think it would come back as anything. My diansosis after the initial encision is Melanoma In Situ (no ulceration) supervening on active regressing compound melanocytic naevus. I was told this is good news as it is in situ. My concern is that on the report it states that the tumor was found in the top layer of the skin extending to the granular layer. it states however "in the papillary dermis most of the change comprises of an infiltrate of lymphocytes and melangophages with a small number of bland naveoid melanocytes. These changes represent active regression in a melanocytic tumor. There is no ulceration. Deeper levels wer performed which confirm the changes discribed.". This has me worried as there has been regression. Does this mean that they can't actually determine how big the melanoma was as it may have started to regress? Are they able to be sure it is insitu in this case? I am terrifed. I have been referred to a dermatologist who I see in two days to see if I will need a wider excision as the margin is only by 0.3mm at present. 

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sallyandree's picture
Replies 3
Last reply 8/28/2016 - 2:50am

My significant other has Stage IV melanoma which moved from the original location (his back) to his stomach.  The melanoma has only traveled to his stomach and has not metastisized to other areas.  He has been on an Opdivo and Yervoy regimen since April (he has gone through 5 rounds).  A PET scan was done a week ago which revealed there has been no improvement, so we need to look at other options for treatment.  He is NRAS positive and the oncologist recommends putting him on molecular targeted therapy, specifically a combination of Binimetinib and Trametinib.  This has been quite a week with this news, but we are trying to hang in there.  

Has anyone who is NRAS positive gone through targeted therapy?  

Thank you. 

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Aaron's picture
Replies 10
Last reply 8/28/2016 - 10:52pm
Replies by: Aaron, KAF, JoshF, Maria C, BrianP

I am just posting on here to give an update on what's going on in my world for anyone who may be wishing to read it.  As a reminder, I am on an ipi/nivo trial with a braf inhibitor arm to follow.  Shortly after my third infusion headaches began with my pituitary being compromised and developing vitiligo all over my arms.  4th treatment of infusions were cancelled with ipi probably being permanently off the list.  i understand this and am ok with it as I know I am stimulated.  Last night I visited with Dr. again and am up for my first scan next Thursday.  i have not been weaned off prednisone in anyway shape or form and do not believe I will begin being weaned for a few more weeks.  I was informed that I may no longer be able to participate in the trial since I no longer fit in their parameters and if I do continue on the trial, they may want me to go ahead and move onto the BRAF arm.  It is questionable as to whether or not I will be able to take Nivo anymore as well, since I did have to take benydryl during my last infusion (though I can't help but believe that we will at least try it again). There are still a lot of looming questions out there, but i feel it is in my best interest to pursue the nivo option rather than continue of trial with BRAF at this point in the game.  I feel in my gut that I will see an improvement in my first scan, just don't like the idea of being denied the use of the trial altogether or giving up on immuno prematurely.  I am still thankful though that even if I am off trial that the nivo component is still readily available to me if I have the consent of the drs.   

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JohnA's picture
Replies 8
Last reply 8/27/2016 - 10:53am

Hey folks, 

My wife has 4 brain mets and is about to get SRS next week for them at a major medical center.

Ipi+nivo eliminated all body and previous brain mets in 3 cycles, but these 4 new brain mets grew while on therapy. Bummer.

The question comes to what to do after the SRS.

I know of the data (thanks Celeste!) on nivo + SRS from the retrospective study from Moffitt released earlier this year. Basically, if you get Nivo within 4 weeks after SRS, outcomes are improved.

BUT - she's only had 3 cycles on Ipi+Nivo, so technically she could have 1 more Ipi+nivo.

Clearly, the concerns are that side effects will be enhanced in the brain by combining SRS and Ipi+Nivo, and if the side effects are bad enough then she'd have to come off treatment entirely and maybe miss the chance to have the Nivo maintenance doses.

Anyone aware of any data (experiences?) on which to pair with SRS (Nivo only or Ipi+Nivo) and how closely they should be paired in time? I imagine you want the brain inflamation to reduce from the SRS before starting anything new?

Thanks.

 

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