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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jennunicorn's picture
Replies 12
Last reply 4/18/2018 - 2:15pm

I found a recommendation for this book on a blog of a young woman going through cancer. I am almost done reading it and I am so glad I found it!

"Everything Changes: Insider's Guide to Cancer in Your 20's and 30's" by Kairol Rosenthal

It's not a guide really, but it's written by a woman who found out she had thyroid cancer at age 27 and decided to write a book made of many different young cancer patient's stories. 

This is the description from Amazon:

On a shoestring budget and with tape recorder in hand, Kairol Rosenthal emerged from treatment and hit the road in search of other twenty- and thirtysomething cancer survivors. From the Big Apple to the Bible Belt, she dusted the sugarcoating off of the young adult cancer experience, exposing the gritty and compelling stories of twenty-five complete strangers. The men and women in Everything Changes confess their most vulnerable moments, revealing cancer experiences they never told anyone else—everything from what they thought about at night before going to bed to what they wish they could tell their lovers but were too afraid to.

Being 29 myself, it definitely feels lonely sometimes... all of my friends are getting married, having kids, getting engaged and have never had cancer of any kind. Every day it seems like a new fun life event is happening to someone I know on Facebook... and I'm over here like, yeah I just got my first ultrasound and it wasn't for pregnancy! 

Anyway, for anyone else that is young and wants a good book to read to not feel so alone in this cancer world, this is a great one. It's good for all ages, really.

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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gopher38's picture
Replies 4
Last reply 4/18/2018 - 1:39pm

Hello.  I don’t expect to get an answer here, but, who knows, maybe someone has some ideas.  Lots of knowledge floating around here.

Has anyone experience pricking all over their body after their WLE?  I started getting this not-continual-but-regular pricking sensation after my WLE/SLNB and PET scan, but before I’d started my immunotherapy (so it’s not from the nivo/ipi, although it has continued since I started with that, for five weeks or so now).   It’s most frequent on the hands, but also on feet, torso, face, neck, etc.  I’ve – of course – been reading on-line, and they say that liver problems can cause this, so – always expecting the worst - I thought maybe it was melanoma spread to the liver, but my scans have all been clean (and my blood tests for the clinical trial have all been normal).  I thought maybe it was something in the PET scan fluid, but the nurse tells me that that would have all been out of the system in a few days.  Originally, I chalked it up to flat out nerves, but I’m truly not that anxious right now.  I’ve had operations before, and I’ve never had a problem with anesthesia or latex or whatever.  I suppose it could have nothing to do with my melanoma and associated operations, scans, etc, (like suddenly developing MS) but the timing would be truly strange.  I don’t think I’ve changed shampoo, detergent, etc.

I’m just wondering about this WLE.  My mole was about the size of my thumb in the middle of my back, and I think the doctor said that they were going to take twice its width on both sides, which seems like a lot of skin.  I’m just wondering if they could have done some nerve damage during something like that?  If so, could it manifest itself in other parts of the body, like my face or hands?   What about the lymph nodes?  They took them out on both sides.  Kind of grasping for straws, but I can’t think of what would cause this.  Ideas appreciated.

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Anonymous's picture
Replies 3
Last reply 4/18/2018 - 9:49am
Replies by: JuTMSY4, jennunicorn, Anonymous

I have 2 1-2cm lesions on the spleen that no longer light up on PET, but which show up on CT. Has anyone had a similar situation where the mets go active again? We are deciding what to do with continuing treatment, so this feels important.

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JAE's picture
Replies 4
Last reply 4/18/2018 - 9:16am
Replies by: Bubbles, Prd10

Hi All -- my 40 yr old husband was diagnosed with Stage 4 Melanoma shortly after undergoing emergency surgery to remove a large brain tumor last May. He does posess the Wild type, genetic mutation that allows for BRAF. Subsequent IPI/NIVO immunotherapy (now just NIVO), brain and spinal radiation, BRAF, and an intestinal surgery has helped to end tumor growth and eradicate many tumors.

Of current concern are a large lung tumor and liver tumor that have increased slightly in size and show same to higher "darkness" in scans. His liver tumor was biopsied this past week and we'll get results/discuss next steps this coming week. It's likely that their surgical removal will be considered or recommended. We of course want the least invasive yet highly effective option, which is why I write today. I'm interested to know of others who may have been at a similar point willing to share, or provide any input.

He's being treated at Kellogg Center in Chicago suburbs. Many thanks in advance,

Jennifer

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Lucas's picture
Replies 3
Last reply 4/17/2018 - 5:23pm
Replies by: Lucas, Kevin2016

I recently had an extensive local recurrence located all inside of skin graft. This was removed by a 1cm wide excision which resulted in "close" margins. 7 weeks later i have a few tiny mealnoma dots outside of resction scar. They are right on the edge. I have stage 3b disease and am undergoing opdivo adjuvant just started i treatment. I stopped Keytruda clinical trial after developing type 1 diabetes and horrible arthritis. I also do not see a melanoma specialist (unfortunately) due to being unable to switch insurance at this time. I am in Kaiser system. Im hoping for advice on next steps or similar experience? thank you!

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Scooby123's picture
Replies 6
Last reply 4/17/2018 - 5:17pm

Hi Guys,

To all taking vitamins, I would like to know what vitamins you guys take and did you have to get the thumps up by your consultant before taking them. I never get a yes and no if ok and at moment on keydruda.

i am going through meanupause, thyroid issues and on keydruda.

vitamins I take are zinc, magnesium, garlic, b2, vitD,cod liver oil, Cq10, plus a gut bacteria tablet.

After taking zinc, magnesium, B2 my wee was bright yellow anyone on these have had same issue. If so is it normal,

Thanks guys

Scooby ❤️

 

 

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Replies by: Kevin2016, obtu.bt

I met a man at Kaiser getting my every other week Opdivo.  His recliner next to  mine. My treatment just starting and his finishing up.  He said he had stage 4 metastatic melanoma.  I said so do I!  A year ago he wasn’t feeling well, so he heated up a can of Progresso Clam Chowder, next day  his bowels were light colored so he went to Kaiser walk in since it was the weekend.  The doctor said his intestinal problem would be fine in a day or two and it was.  But to be safe the dr ran a lot of blood work.  Ended up he had a mass on his liver and tumors all over, even his lung.  He had only 1 of the 4 Opdivo/Yervoy treatments and had bad side effects.  I asked which? He replied “which ones didn’t I have?” And he went on Opdivo maintenance right away, the 240 mg.  That was a year ago, all his tumors are gone.  It has something on his spleen left.  He said if that’s removed he would be NED. (No evidence of disease.)  His lasting side effect is the hair on his arms is white.  Thank you God for Immunotherapy!!

He said i could share his story but not use his name. 

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Mamasgotsomescara's picture
Replies 3
Last reply 4/17/2018 - 3:17pm
Replies by: Anonymous, Linny, Janner
Hi all. I am 3 months post surgery for stage 0 melanoma on my lower leg. 
I have a apt next week with my dr., but I am nervous about a new freckle I discovered on the bottom of my toe. My dr hasn't checked the soles of my feet in over a year and it didn't dawn on me to check them until recently. The freckle is light brown and white. Should I be worries? I read online it's very rare to have freckles or moles on the soles of the feet.. 
 

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cjm22's picture
Replies 9
Last reply 4/17/2018 - 3:03pm

Hi all, I haven't posted before but I'm a very avid reader of this forum. My boyfriend is in his mid-30s and was diagnosed with stage IV melanoma in early February with 3-4 brain metastases (they're not sure about the 4th yet - could just be a blood vessel - 1 was very large but the others are <1 cm) and some in his lungs, too. As far as we know there is no cancer anywhere else, although they're doing another full-body PET scan and MRI next week. He had a craniotomy for the largest brain met, then did WBR + SRS, and now he's about to start the Ipi/Nivo immunotherapy combo next week. So they're treating him pretty aggressively.

Unfortunately the lung mets are progressing rapidly. One tripled in size in just 6 weeks -- they did a CT scan in early February and did another one this past week. :( The largest lung met can't be surgically removed, partly due to its location and because there are other mets in his lungs so the oncologist says it's just not worth doing the surgery (also he's only 7 weeks out of brain surgery, where he had some significant complications afterwards and almost died... thankfully he's doing a lot better brain-wise now although still has significant headaches without painkillers). He started showing lung-related symptoms early last week with coughing, audible wheezing, slight shortness of breath and chest pain, so the doc ordered a CT scan and called later that night with the bad news re: significant growth.

So far the doctors don't think this will change the treatment plan, since he is still able to do most of his daily activities, can climb stairs etc. and we all know immunotherapy has the best chance of long term success. But I'm scared about how quickly the lung metastases are growing and the fact that they're impacting his ability to breathe. :( I'm scared that the cancer will outpace the immunotherapy.

They don't want to put him on BRAF inhibitors because, due to the funding situation here (we're in BC, Canada), that could prevent him from going on immunotherapy afterwards -- the immunotherapy combo program he's on right now might not be funded in the province for more than a year. So they want to get him on immunotherapy ASAP.

Not sure why I'm posting but just looking for reasons to be hopeful :( We moved in together just 2 months before this all started. He's had melanoma twice before -- once in 2010 (mole removed), then a recurrence in lymph nodes (Stage III) in 2014, and now this. 

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chrisholder's picture
Replies 8
Last reply 4/17/2018 - 2:35pm

Hi, all,

I posted about a week ago for the first time, wondering if there were people reading who have mucosal melanoma.  Mine is in the maxillary sinus & was diagnosed in May of this year; started Ipi/Nivo soon after but had to stop after only two infusions due to severe side effects and hospitalization.   Am now on Pembrolizumab (Keytruda) & so far tolerating it.  Would be very eager to hear of others who have MM, what your treatment is, how it's going, how you are managing the side effects, etc.  Unfortunately it's only 1% of all melanomas and so there's far less statistical history and information tha for the other 99%!

I read this and several other patient-based cancer sites/blogs regularly and am contnually moved and uplifted by so many patients' courage, determination and - in the face of this awful disease - humor.  I pray for everyone's peace, comfort and improvement.     Chris

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Anonymous's picture
Replies 18
Last reply 4/17/2018 - 8:15am
Replies by: Anonymous, LynnLuc, Charlie S, Janner, Gene_S, washoegal

Are my odds of another higher than for my siblings since I've already had one?  We have same skin type, same type of moles.  We have skin that tans, doesn't burn easily.  We do freckle and have multiple freckles but not that many moles.  I am a little confused as to how increased my odds are and how carefully I should be watching for a new one after my in situ diagnosis?

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obtu.bt's picture
Replies 4
Last reply 4/17/2018 - 4:40am
Replies by: obtu.bt, Polymath, Bubbles

Hi Folks,
Does anybody experienced electrotherapy before for melanoma? Do you have any information about this treatment?

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/17/2018 - 3:47am
Replies by: Anonymous, bjeans, Janner, Nicole78

Hi Everyone, my name is Nicole , I’ve just been diagnosed with melanoma and that changed everything, I can’t sleep properly :( I have up and downs thinking that I have cancer and that is shocking :( The report from the shave biopsy show a Clark level 1 , Breslow thickens - N/A which is not sure what’s that... peripheral: 2mm, deep 0.5mm. I had the excision and waiting now for the biopsy . The doctor said that he took as much he can and I really hope that the biopsy will come up good. I have another one on my back which is just pyaplastic compund so I will remove that one as well. I’m sure there are people with worse case :( I never thought that I will ever be diagnosed with melanoma as my doctor always said that European people are unlikely to have it so it was a big shock for me the result :( I’m crying a lot , I have two kids and I’m thinking at the worst :( I have moments when I think , it’s ok ,it will be ok but then I’m thinking, it’s cancer , it’s there , anytime can come back , I’m suspicious of each mole on my body now :( it’s not easy...I feel sorry for everyone here having melanoma and I think we just have to hope that the science will discover a cure and we all be safe! 

Nicoleta Tufis

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justscared's picture
Replies 5
Last reply 4/16/2018 - 6:17pm
Replies by: justscared, Janner, Anonymous

Hi all. I’m back again...had a mole removed that came back as moderately atypical a few weeks ago. Been obsessively checking my skin ever since, convinced I’m going to end up with melanoma  

I’ve had an odd mark on the back of my leg since early last year. It’s faintly hard underneath, and almost a bruise color. I don’t know when it showed up, but mentally I want to link it to an incident where I swung my car door shut too fast before my leg was clear. The pointy bottom edge caught my leg and hurt like CRAZY...I think it actually scraped the skin through my jeans and bruised pretty badly. 

But my hypochondria is trying to turn it into something more. It hasn’t changed at all - the way it looks now is pretty much how I remember it always looking, since it showed up. It doesn’t itch, but it’s just a little bit tender when pushed. I’ve just never really had an injury to compare this to. Could it just be scar tissue? Or does this look more sinister?

I’ve freaked myself out so much that now I’m almost convinced that the door hit my leg in a different spot. I go Monday for a full skin check that was already scheduled after my biopsy. 

I even went and hadn’t my bf help to reenact the incident, and the door nails the spot dead on. 

http://tinypic.com/r/zx200n/9

http://tinypic.com/r/15pik3c/9

 

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