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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f2froit's picture
Replies 5
Last reply 3/8/2016 - 10:51am
Replies by: f2froit, Bubbles, melj, JuTMSY4

Hi, my wife is currently using this drug to deal with her Sarcoma. I know this is a Melanoma forum, but in her case, she cas a clear cell sarcoma, which tends to be rather close... sadly, even in functionality, its currently running rampant on her lymph system (many nodes invaded throughout her body).

Last september she had a PET which showed the primary tumor (ankle) and mets on the lymphs of her thigh; both areas were operated with clear margins, but shortly after we started having a few mets at first and later... many :(
The good thing is that as of last PET the only compromise were apparently several nodes and maybe some muscle, but no main organ or the like.

We discussed options and although an anti-PD1 wasnt on the table, we managed to get it and give it as the first systemic treatment.

After three weeks (tomorrow second dose), I do think that some tumors on her back are going smaller (the bigger ones), but at the same time, we are finding multiple bulges where we do think that there wasnt anything there. I know that this might be consistent with Keytruda making the tumors to be like inflamed, but some of them are really, really small... so, going to the first question, did anyone DID had new mets under the medication and it worked nonetheless?

Another question, some of this "inflamed" tumors are like more sensitive, making my wife to be a little in pain because every position makes her to be inconfortable, is this common too?

And lastly, she isnt having almost no side effects, except last point and sometimes some tiredness, I was hoping for some as an indication of something happening (rash in tumor site, etc), which are your stories on this regards?

Well, some big thanks in advance!!
Ariel

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/25/2016 - 10:34pm
Replies by: Anonymous, Kare83, mmoss, Janner

Hi;) I was diagnosed with Stage 1a on my shin in Jan 2015 and also an Insitu melanoma  on my shoulder. I had the WLE performed by my plastic surgeon and all margins came back clear. In Feb 2015 i was diagnosed with 2 more Stage 1a spots. One on my thigh and knee that needed a WLE. Back to the plastic surgeon and Luckliy all margins came back clear. Ive been seeing my dermatologist every 3 months for skin checks and always seem to get something biopsied. Until last month most of the biopsies have been mild to moderate atypical moles. A few weeks ago I just had another WLE on my ankle and my back for Stage 1 spots. Waiting to get the results. My question is should I continue seeing my dermatologist or try to see a specialist at a melanoma clinic? I'm so afriad they are missing something, but everything I've read  makes me think the clinics are for patients more advanced melanomas. All of my melanomas were very vague, they did not look like anything they tell you to look for...my derm almost didnt biopsy the last one because it looked like a bug bite. Any information or feedback would be appreciated:) 

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Replies by: MoiraM, Kjacoby, Anonymous, casagrayson

Hello, 

My name is Kayla and I am the daughter of nothing short of a true hero. He is 57 years old and the best dad/grandpa anyone could ask for. He was hospitalized Jan 22 with stroke symptoms, lossbof functionality in right leg and arm, wicked headache, confusion etc. It was determined that he had one large bleeding brain tumor and two small ones which were deeper but not bleeding. The large one was resected and the other two irradiated with gamma. He has since gained full function of his arm and leg. After many tests and scans the primary site was not located, nor was any additional mets or cancer anywhere else.

Originally, there was talk that we would immediately start immunotherapy after gamma. Just over a month later, after learning he was BRAF negative and "free of measurable disease" he would not be treated right now and would just be watched with scans every 8 weeks.

I am here because while my family rejoices I can't seem to find my happiness. I am incredibly grateful, and feel very blessed, lucky, whatever you want to call it that round one with this beast was so successful. But the waiting game is so hard for me. So for now, I will be lurking here, reading stories of long term survivors and long terms between recurrence, and feeling ungrateful for the existence of this awful disease. 

 

I figured I would introduce myself if I will be reading your personal thoughts and stories. And please know that I do understand that some of you are fighting much harder battles right now and in no way mean to belittle that with my emotions of being unhappy during this happy time.

 

 

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I was driving to work and I heard my wife, Karlie on my radio.She had called into the Dave Ramsey show to seek his Christian advice on money reference my 3b melanoma and thyroid cancer diagnosis. I was very surprised to hear her voice. It is episode 7980-last caller-about 33:30 in. Check out this cool episode: https://itunes.apple.com/us/podcast/the-dave-ramsey-show/id77001367?mt=2...

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btcedarr's picture
Replies 4
Last reply 2/24/2016 - 10:38pm
Replies by: btcedarr, jennunicorn

I had a groin SLNB, which was negative, back in October with a good recovery. Most numbness is gone with minimal to no swelling. The problem is I occasionally get a pinching burning pain throughout the day. Is this tyical?

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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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