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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Anonymous's picture
Anonymous
Replies 0

Anyone hear from Janner lately? Haven't seen any posts just wondering. 

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FengSFamily's picture
Replies 4
Last reply 8/29/2016 - 10:54pm

Dfeng lost his battle with Melanoma on August 6, 2016. He is survived by three young daughters ages 5, 3, and 2 years old, as well as his wife.     

 

https://www.melanoma.org/community/profiles/dfeng/activity

 

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KMick's picture
Replies 1
Last reply 8/29/2016 - 10:38pm
Replies by: JoshF

Anyone have updates on Jake and Charlie S.?  I think of them often and hope for the best but haven't seen any recent posts.

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/29/2016 - 1:16pm
Replies by: Casitas1

Hi all,

Has anybody had really elevated lipase levels (1900, upper limit is about 160) but been asymptomatic? First we thought it was pancreatitis but a no fat diet and steroid infusions have not lowered the enzyme levels but resulted in some serious weight loss! Im waiting for a CT scan now and wondering what it can be. Thanks. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/29/2016 - 11:06am
Replies by: Casitas1

β-galactosidase is a hydrolase enzyme that catalyzes the hydrolysis of β-galactosidase enzyme into monosaccharides. Substrates of different β-galactosidases include ganglioside GM1, lactosylceramides, lactose, and various glycoproteins.

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jennifer_s's picture
Replies 7
Last reply 8/29/2016 - 10:58pm
Replies by: jennifer_s, Ninniditti, Gene_S, Anonymous, 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 9
Last reply 8/29/2016 - 10:49pm

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 16
Last reply 8/29/2016 - 10:34pm

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 3
Last reply 8/29/2016 - 10:52am
Replies by: Casitas1, 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 5
Last reply 8/29/2016 - 10:30pm

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 22
Last reply 8/29/2016 - 9:59pm

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 8
Last reply 8/29/2016 - 6:31pm
Replies by: Anonymous, jennunicorn, 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 15
Last reply 8/29/2016 - 4:16pm

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 2
Last reply 8/29/2016 - 1:32pm
Replies by: rabbits68, 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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