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.

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Yesterday my dermatologist called me to tell me that the mole they did a scrape biopsy on my back was melanoma in-situ. They scheduled me to come and have an excision on September 13th. They said they are sending what they get from the excision to pathology. Does this mean that the diagnosis could change from in-situ to another stage? Or does it stay in-situ and they will remove everything during the excision so it doesn't develop further? 

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Julie in SoCal's picture
Replies 1
Last reply 8/30/2016 - 7:13pm
Replies by: JoshF

Hey there Friends!

Yesterday I had an intransit met biopsy and the slides sent to the good folks running the NY-ESO-1 trial.  I'm not enrolled in it, but have agreed to have my tissue sample tested.   I should know if my tumor has the NY-ESO-1 protein in a couple of weeks when I go back to have my stitches removed. 

In the mean time, I'm hitting the immuniotherapy "science books" as hard as I can to learn as much as I can about them.  For this history & literature & art loving student, this is a bit of a brain freeze.

So, my question to you all, and especially the ratties out there, is how did you evaluate and then ultimately choose which clinical trial was best for you?   I read the research proposals and I'm a social science researcher, so I get the idea of what's going to happen and what the trial is aiming for, but how do you know, how do you evaluate which of the research drugs and approaches are promising- assuming all research projects are not created equal?  How did you find the right overlap between a trial's goals (further science) and your interests (kicking mel to the curb?)  How did you evaluate this?  How did you evaluate the science behind the trial's theory of change?

Thanks for all of your help!

Julie

 

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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jamieth29's picture
Replies 2
Last reply 8/30/2016 - 7:51pm
Replies by: jamieth29, JoshF

Just got done at docs...pet/ct showed a spot that little up in my ribs but I took a good blow there about a month ago and thought I actually broke them so hopefully nothing. Also a spot in right axilla and spot in throat. Doctor said he isn't concerned about them because there is no masses and very low such. I did some hard manual labor yesterday not even thinking about scan. He said not to worry and we'll just watch them for scans in 3 months. Brain mri- no new lesions and spot that hemorrhaged shrunk from 3.7cm to 15mm. We are unsure if it's leftover blood from radiation or burst from disease but it's going away so good news. So all in all I think scan went well maybe pet scan is not needed every time as something always seems to light up a bit but always different spots then gone next scan. Thanks everyone for the thoughts and prayers it helped a ton. Special thanks to Josh for the email this morning telling me to be confident and the talk about anxiety. Get to live for 3 more months worry free. Fishing hunting and loving the wife and kids here I come!!

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maboco3's picture
Replies 1
Last reply 8/30/2016 - 8:02pm
Replies by: JoshF

Okay. I was diagnosed about 5 weeks ago after a painful lesion was removed from the middle of my back. My initial appointment with the cancer center is tomorrow, and although I've been dealing quite well with it, I'm nervous. Labs are Breslow 3.1, Mitotic rate 15, and the such. I know what to expect tomorrow from medical websites, but thought I'd ask here for first hand knowledge from real people. Thanks for any advice.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/30/2016 - 4:24pm
Replies by: Prd10, Alestrada88

Has anyone here ever had a baby after being diagnosed with melanoma? Any reoccurrence? One dr told me no more babies and the dermatologist said she had never heard of that and she didn't see a problem with it. My husband and I want a big family and it is breaking my heart thinking of not having more kids. Please any advice or links would be helpful! I've been researching so much but can't find much information!

thanks everyone in advance! 

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Momofjake's picture
Replies 5
Last reply 8/30/2016 - 5:19pm

Hi to all my friends and loved ones here!

I took the break you do when you get the chance for some "normal" good times:) Its tough to start off the forum with losses. Since Artie I can barely log on. Sept 12 marks 2 years since Jakes diagnosis. He was such a kid at 17. That was that time of shock.  He is now 19 and wise beyond his years. He is in charge of his medical decisions now. It's a tough age. He has been hard on me. Only me. Still quite pleasant with others, but not being able to go do his life has been trying!

K. Jake had a very heavy tumor load and had tried keytruda after all the chemo, radiation, interleukin, interferon, surgeries, etc. Nothing worked. SO they went w the MEK/TAF combo. He spent 10 days violently ill. He stopped treatment for a few days then pushed on w just the TAF. The docs have pushed him to add MEK at a lower dose but he refuses. It's been over 3 months. His first scan showed huge improvement. He looks incredible!! He is really active. He is on this completely focused mission to be "cured". He eats crazy good, takes tons of supplements, does some holistic/unconventional stuff that I barely know. He tells me very little. He is still a kid but is of age to do this and truthfully it's his body. He is smart and he believes he will win. He just cancelled a trip to Hawaii w his dad and is ALL in until his scan 9/13. It seems much hinges on this scan. He has told me he is needing to be well or be done. I understand. He is a young, adventurous, smart kid. All his friends and siblings lives have kept moving on. He says he isn't interested in living just to stay alive--I get that. So, his days are filled w blending, napping, pills, gym, little brothers, avoiding mom, and believing. He reads tons on the placebo effect etc and is wrestling with his body, mind and faith. We spent the summer doing amazing things and traveling like crazy!! There is my novel! Sorry. Hope this is good news given we deal with so much heartache here. I know TAF is short term....but who am I to tell anyone they can't win:) Just following Jake. Trying to help him. Trying to not be sad watching him struggle. And trying not to think too much about the scans coming. I think about many of you so often. I will report on scans and keep those fighting and the families of those who have lost in my prayers. 

Kerri--momofjake

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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 12
Last reply 8/30/2016 - 2:40pm

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 5
Last reply 8/30/2016 - 6:06am
Replies by: JoshF, Momofjake, KMick

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 8
Last reply 8/29/2016 - 11:38pm
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 11
Last reply 8/30/2016 - 9:12am

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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