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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Bradley75's picture
Replies 1
Last reply 4/14/2016 - 2:39pm
Replies by: jenny22

I just finished my 7th round of shots.  I am using Leukine because I didn't qualify for any stage 3 clinical trials at the time of my diagnosis.  The Leukine was my best option to try to prevent recurrence.  My question involves side effects.  I have had similar side effects on all rounds with injection site reaction and a little fatigue.  This round is the first time I have been dealing with a headache.  I have had it for over a week now and am starting to wonder if it might be something other than a side effect.  Any Leukine users out there with a similar experience?  I asked my melanoma care team and they said it is most likely a side effect, but why would it occur on round 7 and not on any other round?

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cheris's picture
Replies 4
Last reply 4/14/2016 - 2:12pm
Replies by: cheris, Sfern5, BrianP

Hi, All,

I have read this forum consistently for years, and I finally registered.  Such good info.

I will be having my 16 infusion of Keytruda, and I am so surprised at how sickly I feel.  I'm on my second bout of bronchitis.  My thyroid reading is very low, my blood pressure and glucose are high but my LDH is 125.  It's never been that low.  I'm having a PETCT and MRI Friday, earlier than usual because of my symptoms.  My oncologist mentioned a vacation from treatment, and I automatically said no.  I felt like it would be an experiment.  Any thoughts?  Thanks.

Cheris

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jade1111's picture
Replies 15
Last reply 4/14/2016 - 12:57pm

Hello!

My mom was recently diagnosed with Stage 4 Melanoma. It is currently in 1 inguinal lymph node, right adrenal and liver (2 small lesions). Though this is stage 4 and not good it does not seem as bad as it coud be. We have talked with a couple of different Drs as well as a complemtary care Dr and looks like choices are as follows. Wondering if anyone has any input on the following therapies and how they figurd out in initial treatmet process how to proceed. It feels overwhelming!! Excuse my spelling and improper use of med references. Still learning med lingo.. They say the names so fast in appointments its a blur!

-Anti Pd1 therapy (keytruda) solo? We have heard different stats on how effective this is. And are concerned about side effects. Currently she feels fine, just swelling in leg..We have been told this is a good time to start treatment but it seems scary wheone someone feels fine to then take on the potential serious side effects. But at the same time have heard the therapy works better when not as heavy load to deal with? IS there a harm in trying this first.. Because one Dr was pushing the clinical trials..

-Clinical Trail: Find a Trial that uses combo meds? Will she be excluded for trying Anti Pd1 alone first? What are advantages? Isnt a cinical trial riskier in some ways.. side effects wise. And then to stil manage care locally if doing out oof area.

-Targeted Immune therapy: Not sure postiive for BRAF yet. Heard these work well but may not last as long?

-Immune Therapy and Infusion (AntiPD1) combo... I guess this is a trial? 

-Advocate for ablation/cyberknife in the groin, adrenal and liver.. or one area. Looking for a Abscopal effect. Not sure whom would go for this type of treatment and if an argument coud be made for it in these locations.

Thanks so much for all information on this board. Its overwhelming in the appointments but with what I have read and try to understand on here I feel a little more educated.. probably like others on here.. not what I was planning to learn so much about! 

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jennunicorn's picture
Replies 2
Last reply 4/14/2016 - 12:01pm
Replies by: jennunicorn, Tamlin

This has been an eventful day in the SF Bay Area for immunotherapy news... so I had to share this too

I honestly feel incredibly grateful every day that I live so close to such a great research hospital, UCSF has been so wonderful (after some not so  great experiences elsewhere).

And now to read they have a whole immunotherapy program and clinic that will help more than just melanoma patients live their lives after their diagnosis. So awesome! Highly recommend anyone on the West Coast to check out UCSF if they need a good place for clinical trials, treatment, or just second opinions.

https://www.ucsf.edu/news/2016/04/402411/new-cancer-immunotherapy-clinic...

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Edwilcox's picture
Replies 5
Last reply 4/14/2016 - 10:48am
Replies by: Jewel, swissie, Anonymous, Bubbles, Janner

I was diagnosed with stage IIIA melanoma last September. I go in for CAT scans every 3 months and so far everything is no-evidence-of-disease. Before the melanome hit me, I had a bad knee, it's only gotten worse. Will having it replaced change the odds of melanoma recurrance?

Thank you

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jennunicorn's picture
Replies 3
Last reply 4/13/2016 - 9:47pm

Just saw this and got pretty excited since this awesome news is happening in my own backyard. I love when super wealthy people put their money in the right places! :)

http://www.usatoday.com/story/news/2016/04/13/billionaire-announces-250-...

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Sukibear's picture
Replies 3
Last reply 4/13/2016 - 5:34pm
Replies by: Sukibear, Janner, Kim K

Hi,  everyone. I'm new and just received news that my biopsy revealed that my mole was, in fact melanoma - stage 2. It's on the back of my left arm. It was a newer mole...maybe 8 years ago I noticed it. But, in December I woke up with it itching and swollen. (And the parameters were lighter brown and spreader out beyond the black raised mole, but not the size of a pencil eraser )The itching was maddening! ...even waking me up. Because it was a mole, I was afraid to scratch it. So, I left it alone. It took me till two weeks ago (3months) to be seen by the dermatologist from my referring doc. They did a biopsy..but I saw three dark dots left behind in the hole. I tried to stay optimistic, thinking that it was just part of a normal mole left behind. I was wrong. 

I got the news today and they want me in for the excision on Monday. I'm glad it's  fast-- I want this thing out of me! I have a couple of questions..If they cut into the cancer during the biopsy, can those cells travel into my bloodstream? (They left a portion of the nevus behind) And what happens next? After surgery...what is my followup? What is the prognosis? 

Thanks to you all for your help, advice, stories,  etc. I'm just in a daze I think right now.  I me very thought it would happen to me...

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Patrisa's picture
Replies 3
Last reply 4/13/2016 - 5:18pm
Replies by: Scooby123, Patrisa, BrianP

Hello everybody!

 

I was just wondering how does one know if the tumor burden is high/low?

My fathers oncologyst doesn t use that terminology, so i m not sure where does he stand...

He has a melanoma on his back and some in his lungs (we don˙t know how many of them, because all his reports state just mets in the lungs... is that high or low?

He s  currently on keytruda and has no side effects, first pet scan is scheduled for may.....

 

Thank you very much for  the info....

 

Patrisa

 

 

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Sfern5's picture
Replies 9
Last reply 4/13/2016 - 4:12pm
Replies by: cheris, Sfern5, pookerpb, Bubbles, Anonymous

 Does anybody have any information about difficulty with a cough/coughing up blood And  endless " bronchitis" while on Keytruda?

 They postponed a couple of my treatments to put me through pulmonary exams and cardio exams and came to the conclusion I have bronchitis not pneumonitis which would be a side effect of the immunotherapy.    But it won't go away. It's been about 2 1/2 months of and was coughing and pain in my lungs. My tumors are gone but I'm exhausted. We've tried all kinds of  decongestants, steroids and whatnot. Nothing's working. Any insight would be appreciated. Thanks.

Cancer, Schmancer.

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Marie with 4 boys's picture
Replies 6
Last reply 4/13/2016 - 9:48am

I'm wondering what you all have found useful in helping your kids deal with your diagnosis. I'm especially interested in young children. My 3yo has no clue (which is fine with me), my 9yo is pretty OK with things, but my 5 and 7 yo are having the toughest time. Fortunately, my diagnosis is good, just lots of surgery ahead, but I'd still like ideas if you have them. Thanks.

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Anonymous's picture
Anonymous
Replies 11
Last reply 4/13/2016 - 6:05am

I am starting Pembrolizumab next Monday.  I have a list of possible side effects, but I was wondering when they started?  I have two toddlers and am trying to figure out if I will need help the days following treatment.  Thank you so much for any answers or advice.

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GeminiBird's picture
Replies 2
Last reply 4/12/2016 - 5:01pm
Replies by: ashley_k, jennunicorn

I was diagnosed with melanoma in situ on the separate occasions and in 3 different areas. All the research I've done and info I've read point to certain risk factors including family history, severe sunburns, extensive sun exposure, fair skin, red hair, etc. I have dark hair, medium complexion, never tanned in the sun or tanning beds, no serious sunburns, and NO family history on either side. Anyone have a similar story and what have you learned about this?

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Marie with 4 boys's picture
Replies 2
Last reply 4/12/2016 - 4:50pm
Replies by: ashley_k, jennunicorn

I had my WLE a week and a half ago (biopsy said in situ), and had my return with the surgeon today. We discussed pathology report. Good news - it was all in situ (biopsy said extended to the margins). Bad news, the in situ extends microfocally to the tips and lateral margins. This is in a giant congenital nevus that is fragmented like a large freckle/mole area on my arm. So, I'm now to see a mohs surgeon and a plastic surgeon to discuss my options. My surgical oncologist (who only deals with melanoma), thought the entire nevus will most likely need to be removed, and skin grafts done. The nevus is huge - covers from elbow to shoulder and half way around my arm (appx 11 in x 5 in). Anyone here had large areas removed and skin grafts? Or any other thoughts for me? Thanks so much.

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Hello! 

I thought some of my LA mel friends would be interested in attending this symposium that AIM at Melanoma & The Angeles Clinic are hosting.  Lots of awesome docs and topics! 

https://www.aimatmelanoma.org/living-with-melanoma/patient-caregiver-sym...

Best,

Katie 

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Mat's picture
Replies 11
Last reply 4/12/2016 - 10:47am

So I had my first scans since I started on the ipi-nivo combo in January.  I received the first 3 combined infusions, but then had diarrhea that required the use of prednisone to get it under control.  Out of an abundance of caution, we paused the fourth combined infusion and I moved into the nivo-only portion of the treatment (had my first nivo-only infusion the same day as my scans).  I'm now 11 weeks into the treatment.  My scans were stable--nothing new and no change in my existing tumor burden (which is considered relatively low--but could always be lower!).  I was hoping for better (and continue to hope for better), but I'll certainly take it.  I feel very fortunate to have the opportunity to even try this treatment (which was only FDA approved shortly before I started).  In the meantime, my kids--who were 4 and 2 months at the time of my Stage IV diagnosis in 2013--will be 7 and 3 in a few weeks.  While I would love to get this melanoma monkey off of my back, I'm grateful for each day.

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