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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sister of patient's picture
Replies 10
Last reply 12/29/2016 - 6:45pm

Just another quick update on my sister, Leisa.

Posted a few weeks back that latest thoracic CT showed tumour shrinkage everywhere and no new progression. Now we have a new brain MRI and the results are excellent - "There is no evidence of abnormal enhancement within the brain parenchyma, leptomeninges or pachymeningeal. The previously visualized enhancing lesions within the bilateral cerebral hemispheres have completely resolved (in the interval)." Yay!!!  This - after brain mets "too numerous to count" and WBR as the only option - is phenomenal. 

I am so grateful to the "gods that be," there just aren't any words to describe how I feel, particularly because six months ago, it was doubtful she'd make it this far and any chance of ever seeing NED seemed impossible (there are only two organs in her whole body that were clear - heart and colon).

I didn't want to even "dare to hope" but I sure am now. She still has a long way to go and is only approaching the halfway point of Nivo infusions (started on ipi/nivo combo but had only two infusions before the ipi attacked her retinas) but we have lots of reasons for believing that NED is in the future!

With much gratitude, wishing everyone on here the best possible outcomes and a hopeful, healthy 2017!!

Barb 

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_Paul_'s picture
Replies 9
Last reply 12/29/2016 - 8:33pm

It has been quite the ride. Turns out my intestines were severely impacted with weeks of crap from the painkillers I had been receiving. And my pain was increasing until I ended up on Dilaudid drip. I could not eat for a few days because of excessive bloating and nausea Even trying to swallow oral meds made me heave.

Opiates bind with receptors in the intestines and everything stops. After trying several types of laxative, the one that got the ball rolling is an injection that prevents the opiates from binding to the receptors. Kinda like pathway inhibitors.

However at least it prepared me for the nausea to come from the high dose IL-2, starting tomorrow.

The TIL infusion gave me extreme shivers which required wrapping me in warm blankets like a South Park character, cranking the heat in the room, and 25ml of Demerol. This n spite of a yield of only 15 billion cells, ten times less than I hoped for.

My temperature spiked to 102, but all in all a walk in the park compared to the days of not eating and the from the extreme bloating. 

The last two days my appetite returned and I have been mercilessly cracking jokes with the nurses. Some make better victims than others. Heh, heh, heh.

Tomorrow is the main event. I will try and keep posting.

- Paul

To exist is beyond fantastic.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/28/2016 - 12:54pm
Replies by: Tim--MRF

Where to begin.... 

About a month ago I noticed a odd mole on the sole of my foot ( yes the bottom odd right?) it was never there before it was almost like I woke up one day and bam there it was. It was odd shaped and darker in the middle and also raised up a bit on the darker spot however it wasn't very big. I call the doctor just to have it checked out, he decided to remove it. Now I don't know all the technical terms here but he cut around the mole and also cut deeper down into the mole which required me having 3 stiches. After a week of stiches I go back in last Friday the 23rd of December to get the stiches removed nasty wound but all looked fine. Still haven't gotten any biopsy reports back.... this all seems simple and pretty much like a routine process for people who get moles removed I was nervous but not to concerned as I figured everything would be fine. Now I'm ready to hop into bed last night and I noticed another mole popped up right on the edge of the wound I have from the mole he just took out less then 2 weeks ago... same thing it's small but growing because it wasn't there the day before. Again odd shaped and a dark spot in the middle. I am still awaiting biopsy reports from the first one and now have made another dr appointment for this new mole. So my question is or concern is, is it possible for a mole to grow that fast and also what could this mean?! At this point I'm pretty much in full stress and anxiety about this. And I figured this is the best place to get some kind of answer to ease my mind while I wait for the doctors reports... any help is greatly appreciated!!

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/30/2016 - 11:51am

My elderly father was diagnosed with Stage IIb melanoma in October 2015 which was removed with a WLE.  In October of 2016 he was diagnosed with metastatic melanoma which had spread to his lungs, sub-qs and brain.  Doctors performed a craniotomy on one tumor and SRS on the remaining brain mets and started him on Keytruda (2 infusions to date).

Things were going well until about a two weeks ago when he fell due to weakness/numbness on his left side.  It has since been revealed that his brain mets have continued to grow, they are hemorrhagic and there are new ones.  The conclusion is that this treatment plan failed and now his only options are (1) whole brain radiation and a trial of ipi/nivo combo or (2) palliative care with just a few weeks to live.  My father has expressed that he wants to keep on fighting and I will support him, but his oncologist has strong reservations against WBR as there are many side effects/personality changes which impedes on quality of life.

Does anyone here have experience with WBR?  Could it extend his life by any amount of time? I think part of all of our shock is how quickly this has happened - from seemingly fine in September to now being told there is only weeks left - and that has left all of us wondering if there is anything more we can do.

Thanks.

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Sophietx's picture
Replies 2
Last reply 12/27/2016 - 6:52pm
Replies by: Sophietx, Janner

I recently had WLE for Melanoma in situ. Also had genetic testing done and no found links. My almost 13 year old blond, blue eyes has over 5 large 1 cm and more moles on his scalp. Also a nasty mole in his belly button. He is having surgery today to remove the mole in his belly button and 1 large dark mole on his scalp at Cook Children. Should we consider having all his large moles removed? If yes, would he have bold spots? He has lived in FL and CA. I am worried about him. Any advise? Both of my kids will go to annual skin check ups. My 15 old girl doesn't have any moles. Are moles genetic or my son got them because of sun exposure?

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Aloha14's picture
Replies 7
Last reply 12/28/2016 - 4:57pm

The lump from the one lymph node removal is getting bigger and harder and seems about the size of a tennis ball. It's very painful and feels like it's ripping out my muscle or ligament in the inside of my upper leg. Do these usually get hard and feel solid? I have an app't at the surgeon's office on Thursday but I'm wondering if I should call sooner. 

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Anonymous's picture
Replies 2
Last reply 12/27/2016 - 5:07pm
Replies by: Janner, debwray

Hi all - copy and paste from last post. Newest to oldest below. Im a little confused and more concerned than before

Many thabks.

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/25/2016 - 10:38pm)
Hi Janner/all - advice needed am more worried than before.

In my first post I mentioned that I was going to get a 2nd opinion from a derm as I found the initial pathology report for my dysplastic nevus to be a little vague.

Well that derm called me xmas eve (great timing) to say that the team of specialists on review felt that the mole was mild / moderate (I had spoken to the first pathologist myself who said it was mild).

My original path report apparently didnt mention any cellular atypia which they found on review.

He also said that they were going to run some new slides as 'sometimes when we look deeper we find some worrying things'. Added that if it was on his arm he would want it cut out.

I am now obviously a bit concerned as to why they would a) upgrade and level of atypia and b) think they needed to run further tests. Do you know what these would be? The clinic where I had the punch biopsy done said no further excision is required.

I tend to suffer from health anxiety so I realise I'm probably blowing this out of proportion but looking for any advice here.

Many thanks

Report
Re: Help interpreting pathology report - atypical mole (Att... Janner - (12/14/2016 - 9:11am)
There is nothing about this path report that screams worrisome to me. If I had clean margins (like this one does), I'd just move on. Not all pathologists classify atypical moles as mild, moderate or severe and that doesn't mean the report is lacking if it doesn't. (It makes it easier for us but we're not really the audience this pathologist is writing for). The description itself usually indicates more worrisome architecture or cellular atypia and this one specifically rules out typical melanoma features. (I am not a medical person or pathologist).

http://www.MelanomaResources.info

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/15/2016 - 8:11am)
Many thanks for taking the time to reply Janner - much appreciated
Report
Re: Help interpreting pathology report - atypical mole (Att... Janner - (12/14/2016 - 9:11am)
There is nothing about this path report that screams worrisome to me. If I had clean margins (like this one does), I'd just move on. Not all pathologists classify atypical moles as mild, moderate or severe and that doesn't mean the report is lacking if it doesn't. (It makes it easier for us but we're not really the audience this pathologist is writing for). The description itself usually indicates more worrisome architecture or cellular atypia and this one specifically rules out typical melanoma features. (I am not a medical person or pathologist).

http://www.MelanomaResources.info

Reply Report
Re: Help interpreting pathology report - atypical mole (Att... mannines - (12/15/2016 - 8:11am)
Many thanks for taking the time to reply Janner - much appreciated

*
Reply Report

Hello all

thank you in advance if you are able to help.

I had a mole biopsied and the pathology report didn't state whether it was mild, moderate or severely dysplastic. It was a punch biopsy of a 2mm mole with 1mm margins.

The clinic said all margins were clear and that no further excision is required, however, I'm seeking a second option (from this forum and another dr) as the report was vague. Any interpretation of the report would be much appreciated.

REPORT:
Skin with increased pigmentation of tthe basal cell layer and a junctional melanocytic proliferation composed of nested groups along the tips of elongated and variably fused rete ridges. There is also lamellar fibroplaysia, mild chronic inflammation, pigment incontinence and a few banal melanocytes in the upper dermis.. There is no confluence, mitototic figures or pagetoid scatter seen.

Conclusion: Compound melanocytic naevus, dysplastic

This is a fantastic forum and source of information and comfort which I have been reading over the past few weeks.

Any advice appreciated and I will update also with 2nd opinion from Dr when I get it. I know aypical moles are contentious in terms of their ability to turn into melanoma and also that there is no general consensus on treatment so I'm finding it all a bit 'grey'...

Best wishes to everyone here

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dmturner's picture
Replies 9
Last reply 1/4/2017 - 5:46pm

Yep, my PET scan lit up.  Had the PET scan right before I was going to start Keytruda the next day.  The lymph nodes in the abdomen, pelvic, collar bone, close to primary and right groin.

The options:

Double-blind combo trial with Keytruda and epacadosat/placebo.  Or do Keytruda alone.  Or do Opivido with Yervoy.  I have already did 3-10 mg of Yervoy before I had a reoccurence close to the primary and now that it spread.  So Yervoy did not work.

The melanoma specialist said the Yervy with Opivido was the more aggressive approach.  I am really shying away from the trail since I have yet to be approved and it takes 4 weeks to even get started. 

I now I feel like I haven't had any treatment since diagnosed in June '16 but the surgeries.  Now the doctor is on vacation. 

Opinions.

Thank you, Donna

 

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This is getting unfortunately more interesting. Apparently, I'm being screened for scleroderma which is an autoimmune disease. When I researched this it states that a change in the body can trigger this anything from a virus to internal cancer. They don't know what exactly causes it. I already have hypothyroidism which I've had for years. Anyone also have autoimmune diseases and/or Scleroderma?

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Shaneswife's picture
Replies 5
Last reply 12/28/2016 - 8:33pm

With hubby's miliary spread of melanoma in both lungs and the brain, and multiple tumors in the liver, I'm very worried that there is no data out there to support a braf mek combo for this type of metastases. From my understanding, a miliary spread is extremely rare and having it in 3 organ sites has not been documented that could be found.

Miliary type spread has an exceedingly poor prognosis which worries me the most.

Hubby is showing more and more symptoms since radiation stopped. Jumbled words, anger, tremors when trying to do anything that requires fine motor skills, cramping all over his body randomly.

We see the oncologist Wednesday and I have my list of questions ready.

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K's picture
Replies 6
Last reply 12/27/2016 - 11:47am

Hi everyone, About a month ago I was diagnosed with metastatic malignant melanoma, had all my scans etc and treatment is being discussed. My oncologist is very enthusiastic for me to have the combo Nivolumab and Ipilimumab. Any thoughts or advice from anyone out there? The side effects sound kinda scary, but then so does my diagnosis! Thank you.

 

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Nicklindner's picture
Replies 7
Last reply 12/27/2016 - 9:41am

Merry Christmas everyone. I was hoping to get a little guidance. I receive my first ipi/nivo combo on the 12/15 and about 3 days ago started getting rashes on the back of my arms( which from reading posts on this board I believe is a good thing?). However the rash is growing to my stomach and chest and midsection. Just now starting to itch on my arms. Should I reach out to my doctor or will this rash start to subside?  

Also I have been getting some really wild calf cramps. Anybody experience that?  For about 3 minutes it kills and go away. 

Thanks everybody!

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Aloha14's picture
Replies 3
Last reply 12/27/2016 - 9:47am
Replies by: Hukill, Aloha14, SABKLYN

Ever since I was diagnosed with this melanoma (6 weeks ago) I've had constant appointments at the Cancer Center/Surgery and related clinics/radiology.  I go to a University hospital which is about 2 hours each way from where I live. As soon as I get the stitches out of my lower leg I'll be able to return to my daily workouts at the gym and this will help me relax. 

Last week the surgeon noticed I have more redness near the incision/around the stitches so I was started on antibiotics in case it is an infection. The surgeon said she won't drain the lump in my groin until she's sure there is no infection which makes sense. However, I want to get rid of this large lump on my upper leg which is very annoying and causing nerve pain. Having to spend 3 days at the hospital this week for ultra sound, PetScan, and follow up app't with surgeon unfortunately, all on different days.   

Additionally, I was seen by a genetics counselor and tested for BRAC 1 which was positive. So I've been to another surgical consult that deals with patients with high risk for breast and ovarian cancer. The research showed that positive BRAC 1 are at much higher risk for Melanoma. I actually had the Melanoma but didn't know when I was at the initial consult in Nov. So last week I had a breast MRI-talk about anxiety when I had to go into a closed MRI machine! Add on my usual back/neck pain that's more aggravated from traveling and procedures. 

Hoping the Pet/CTscan machine has a wider diameter than the closed MRI. Thanks for listening. 

 

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Everymoment's picture
Replies 1
Last reply 12/24/2016 - 9:59pm
Replies by: Aloha14

How long was that lymph node swollen before we identified it this week? Is it possible for melanoma to stay in a lymph node for an extended period of time without spreading? Like a year. I'm driving myself NUTS trying to remember when I first felt soreness there. AHHH.

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Aloha14's picture
Replies 2
Last reply 12/24/2016 - 9:45pm
Replies by: Aloha14, debwray

I'm scheduled for an ultra sound of the abdomen to check the remaining lymph nodes in my groin following the lymph node biopsy. I just realized that radiology didn't give me any specific instructions for prior to the test. Has anyone had this and been restricted from eating and drinking before the ultra sound? I'm also having a leg ultra sound same day. I'll probably have to contact the hospital and ask for the on call radiologist. Everything has been crazy at the hospital clnics due to the holidays.  

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