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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Steve Plasier's picture
Replies 17
Last reply 3/25/2016 - 10:27pm

I am curious about what side effects are common with patients. I just had all the lymph nodes removed from my right armpit and will start Yervoy soon.

Steve

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/25/2016 - 1:46am
Replies by: JoyJ
Replies by: jaco, JoshF, AshleyS, jennunicorn

Hi All,

Started taf/mek combo in october 2015 after 3rd reoccurence. First two months were horrible-fever, chills, joint pain-then began fading to only 2-3 days per week feeling bad but managing.

My anxiety grabbed a hold of me and onc put me on amitriptyline. It helped to keep me asleep at night but, for whatever reason I cant get a grip! My onc appt yesterday was a disaster! I am a nervous wreck and i cant keep control of my thoughts.  I feel like a complete failure bc i cant seem to function at 100%. I sit in front of the tv and think about everything i need to do, and i might do a couple things but thats it.

I have 3 girls, the oldest is a 17 yr old special needs, and a 15yo and 12yo. Obviously i am caring for my special needs, but i feel like my other two are going to grow up not remembering me as a fun mom, just a tired and sick mom. They went thru this before (5yrs ago) when they were 7 and 10 and i had a radical groin lymph node dissection folowed by interferon.

Yesterday the onc pulled me off taf/mek for a week and prescribed lorazepam. He wants to switch me to zelboraf cotellic combo which, he says, will do the same as taf/mek with less side effects.

I feel so guilty about so many things-my husband, who carries all this emotional and financial burden, my kids, other people who are going through much worse than me -WHAT IS MY PROBLEM????!!!  

I should be happy i have a wonderful, supportive husband, blessed to have such compassionate children and i am,  yet all i want to do is sleep.  I dont know where i went.

Thanks for listening,

Laurie

Do not fear tomorrow, God is already there.

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gregisblessed's picture
Replies 6
Last reply 2/26/2016 - 7:52pm

First post, first time here. laughDiagnosed with scalp (crown) melanoma, 1.65mm depth, no ulceration, December 2015. CT and PET were clear, SLNB resulted in removal and biopsy of 11 LN, all clear. Excision of scalp with clean margins (skin graft from thigh).

The path report says mitosis however my derm and surgeon say recurrence likelihood is low. I know from these boards that recurrence seems commonplace and believe you me, I want to live life, just was surprised that recurrence likelihood would be labeled "low", one of which said 5%. 

I wondered if anyone could weigh in on that. I will continue to be vigilant and look forward to my next scans in hope. 

My prayers are with you all. My hope is built upon the Lord.

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Anonymous's picture
Anonymous
Replies 0

I have very swollen soft tissue in the back of my knees. Stopped keytruda last August due to muscle pain/spondylitis. Lately now I have what feels like a large painful cramp in my left calf just under the swollen area. Has anyone else had this as a side effect from keytruda ( ps waiting for remicade to help with these inflammations )

thanks

anne-Louise 

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stevecathy's picture
Replies 3
Last reply 2/24/2016 - 2:18pm
Replies by: jpg, stevecathy, Bubbles

Hi , so my husband has now been 4 weeks on combo. Bad side effects fever , chills, vomiting, fatigue so bad !!! Seen oncologist yesterday, started prednisone and taking a few day break from tafinlar. Dr wanting to restart or possibly reduce. Looking for advice and thoughts. THANKS in advance

Cathy Jewell

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jennunicorn's picture
Replies 9
Last reply 2/28/2016 - 10:15pm

Something that just randomly popped in my head today is... can I ever be a blood or organ donor now having stage 3b melanoma? I have always had the organ donor selected on my driver's license. And I have donated blood in the past. Wondering if anyone else has had this question answered by their doctors? And should I call DMV to have organ donation taken off my license? I would hate to think that if anything happened to me that my organs couldn't be used to save a life, that really sucks, but of course I would never want to give someone else cancer. I guess they could still be donated for science? Sorry to be kind of morbid, it's just always been a really big thing for me to have that option.

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

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Renate's picture
Replies 11
Last reply 2/24/2016 - 9:20pm

I was recently diagnosed with Spindle Cell Melanoma Stage IIIa, 1.3mm on my inner thigh and microscopic cells found in my SNL.  I was advised that standard care is to get a full lymph node disection in my groin.and follow up with adjuvdent therapy.  This was all done in a community hospital outside of Chicago.

I saught a second opinion from Northwestern Univ Hospital in Chicago and they reviewed the pathology slides.  After 3 weeks they told me that it was a challenging case and the concensus is a diagnosis of Atypical Spitz Tumor not Melanoma. it is rare and difficult to detect because it looks like melanoma - they did a FISH test and tesetd chromosomes of the tumor and determined it was not melanoma. Its similar to a benign tumor with cancer like tendencies so it can spread to a SNL but thats about it.  They told me no surgery, no treatment and to follow up every 4 months with Ultrasound.

I am feeling cautioulsy optimistic.  Both Drs said no need for surgery at this point - even the first one since the slides are questionable and if NW is wrong they can catch anything that comes up via ultrasound,

So I know this is a controversial diagnosis and complex - Does anyone else have an Atypical Spitz Tumor? Do I go with the Univ Hospital?  Do I get a third opinion?

 

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JoshF's picture
Replies 11
Last reply 2/24/2016 - 10:33am

So path results came back...approx 4mm well circumscribed nodule that tested positive for Melan-A and extended to margins on 1 side so need a bit more removed. I haven't seen or read path report; it's what derm told me on phone. I just can't seem to shake this crap.

Anyway, few questions for some of the folks more experienced with Nivo. My oncologist said that I've only had 3 cycles on Nivo and need to give it time. How do they measure cycles? What is median response time to Nivo? She wants me to have the margin excised, stay the course on Nivo and have a PET Scan 6 weeks after excision. I caught it early again and just can't help but wonder if I'm not responding to drug. I want to be aggressive yet patient and not jump the gun.

Thanks for listening...

 

Josh

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

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/24/2016 - 4:09pm

I've had two biopsies recently, and wondered if anyone had any suggestions for dealing with the pain and irritation from the daily dressing changes. I've started cutting my band aids so there is not so much adhesive on the ends , but thought I'd check here to see what other ideas you might have. Thanks.

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Marie with 4 boys's picture
Replies 1
Last reply 2/23/2016 - 3:12am
Replies by: stars

Today, I received a call from my dermatologist with my biopsy results - malignant melanoma in situ. Pathology report reads as follows: MALIGNANT MELANOMA IN SITU. SEE NOTE.

NOTE: Mart-1 immunohistochemistry highlights confluent growth and pagetoid spread of melanocytes, supporting the above interpretation. The lesion extends to the margin.

I am to see a surgeon to have the rest removed and the margins. I'm wondering if anyone else has had a melanoma in a large congenital nevus, and how it works... My freckle/mole area extends from my elbow to my shoulder and covers about half of my arm in circumference. The melanoma is in a solid brown area (within the larger area) about the size of a half dollar. I guess I'll have more answers when I .see the surgeon, but I'm just trying to process this whole thing. Thanks.

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keepthefaith11's picture
Replies 4
Last reply 2/24/2016 - 10:33am
Replies by: keepthefaith11, Anonymous, ldub, Janner

Now that I know that we have melanoma in the family I am becoming paranoid. I keep looking at the kids thinking if any of the spots I see is anything that could potentially turn into something bad. My kids are six and eight and do not have very many spots. How do you with children deal with this? Should I have them checked by a dermatologist? Nothing looks out of the ordinary, my older one has a mole on his buttock, it has always been there. Of course I have read that when children grow there moles can grow a bit as well, so that makes it even more confusing. When looking at the pictures of melanoma it makes no sense to me. Some of them are so obviously out of the ordinary looking, but some dont look so strange to me. How in the world do you know?

Also, I am looking at myself. Wondering if anything I see could be something bad. I am definitely going in for a checkup ASAP.

Annie

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AllysonRuth's picture
Replies 2
Last reply 2/23/2016 - 6:59am

I am wondering if anyone out there has had low white blood cells on Keytruda?  I couldn't receive my dose of Keytruda this last week because my WBC was too low.  I have struggled with low WBC since I have been on Keytruda since October 2015. 

My doctor at Mayo said a very rare side of Keytruda is that the T-cells not only attack the melanoma, but they also attack the neutrophils and destroy them faster than my bone marrow can make them.  In December they were concerned the cancer had spread to my bones because of my white blood cell counts, however my bones are clear.

they are going to test my blood again on Wednesday to see if I can get another infusion.  Help, has anyone had this?  What are my options if PD1 turns my own immune system against itself, not only attacking the Melanoma(I have partial response to Keytruda) but also attacking the white blood cells.   

Thanks for your help!!

Allyson

brain, lung and small intestine mets

 

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jamesk29485's picture
Replies 3
Last reply 2/22/2016 - 2:47pm
Replies by: gregor913, jpg, Anonymous

Probably the wrong way to do this, but....I wanted to thank Bubbles for all the links she has recently posted. As others have mentioned, it's easy to get overwhelmed with information, and still have no idea what to do. That being said, it's nice to have.

In my personal case, I read as much as possible, which lead me to change doctors. I didn't feel that interferon or interleukin-2 looked that promising. I'm now on Yervoy, because of said doctor change. Whether that was the "best" choice, time will tell. But, we have to be comfortable with our own decisions, because we're the one who has to live with them.

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kickinbutt's picture
Replies 1
Last reply 2/22/2016 - 9:13pm
Replies by: Becky

Hi everyone,

I was diagnosed with sinus mucosal melanoma in Dec. 2013. My maxillary sinus and near my septum were the primary sites with melonomic spots on my palate and gums.

I had surgery to remove the cancer--they got clear margins. This was followed up by tomoradiation therapy and ipi. In January of 2015 there was apparently very vague thing that was not really recognized as a problem on the PET scan until Aug and then it grew substantially in my gall bladder. That was removed this last Jan. Because this is so rare and I was on Ipi, I have had 2 different recommendations. 1 was Keytruda or a combimnation of of immunotherapies or, a course of chemo that is tomozilomide based. The is a recommendation from Dr. Bryce at Mayo who did have a very small research paper available. Both surgeries were sucessful and there were clear Margins. Fortunately, there are currently no more mets. However, because of the rapid return and metastisis, I'm wondering about other folks out there who may have some experience with sinus mucosal melanoma.

Thanks.

Kickinbutt

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