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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wasserd's picture
Replies 5
Last reply 3/2/2016 - 11:16am

I've been searching the forum and unable to find any posts here about the apparently less common ocular side effects to tafinlar/mekinist.

I began tafinlar (solo) in mid-April 2015 as a result of multiple brain mets. The tumors responded well and I remained on tafinlar only, had gamma knife which was also successful. Then over the summer of 2015 the side effects began to accumulate - primarily thickening of my foot soles (making walking painful) and then in late August, a very painful uveitis in one eye.

At this point I learned that the ocular side effects are so rare, my oncologist had only had one other patient experience them, and in their case it presented totally differently, and in both eyes simultaneously. My ophthalmologist, of course, had never had a patient experiencing uveitis secondary to cancer treatment.

I got the uveitis under control, and started mekinist, which I think has mitigated the skin side effects, and even though I had two more cases of uveitis, they were not as severe.

Now, after months of treatment with Prednisone eye drops (and now, beta blockers to bring down the pressure in my eyes, which was elevated by the Prednisone), I am about to stop using the Prednisone drops (at my own insistence - my ophthalmologist is understandably wpried about my stopping).

My vision has returned to 20/20. The pressure is still elevated (in fact, it has increased), but I'm hoping that the combo of tafinlar and mekinist will keep me from experiencing another painful bout of uveitis.

I have access to medical literature, so periodically I look for new papers on the subject, but I just wanted to check in here to see whether there might be any others like me, and what your course of treatment has been.

Thanks,
Deborah

My melanoma/life blog: ill-live.com

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Over 2000 participants from everywhere!  Gather a team or just come.  http://melanomainternational.org/

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Hignite's picture
Replies 4
Last reply 3/1/2016 - 6:00pm
Replies by: Hignite, Janner, Anonymous

I'm the aunt of a 26 year old female who was preliminary diagnosed two days by her dermatologist with Stage  1A  melanoma , superficial spreading type.  Breslow thickness 0.35 mm, Clarks level 111.  Maximum tumor thickness 0.35 mm.  mitotic rate, None identified.  Tumor-infiltrating lymphocytes: Present, not brisk. Primary tumor.pT1a-melanoma 1 mm or less in thickness,no ulceration, less than 1 mitosis/mm.  The incision was in the middle of her back.

she is returning to her dermatologist tomorrow.  We are assuming to review her results and perhaps take more skin tissue.  She will be armed with questions.  I am a cancer survivor and believe in being as aggressive as possible in learning about diagnosis and treatment.  She is my only niece!

Because of the Clarks level 111, is a sentinel lymph biopsy recommend?    Would anyone recommend consulting an oncologist vs. wait and see?  Are there any other tests recommended, MRI, brain scan??  

Any insight would be greatly appreciated.

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Bigdaddy5's picture
Replies 4
Last reply 3/1/2016 - 11:04pm

Sorry. I really don't wish to be here reading all your posts. But I am. I'm really pissed  I appreciate your info - and I figured I should introduce myself and perhaps be able to find the good in all of this.

Me: I'm a Caucasian male 46 years of age.  About 74 inches and 225 pounds.  Father of 5 with my oldest at 21 and youngest at 12 (three in college this September).  I own a small business with 10 employees.  Been very active past 2 years and got into shape and began using "Loseit" app to record every crumb of food I ate since 5/2014 through today.  I lost forty pounds at my peak weight of 215 last September.  My running progressed in that last year I ran two marathons (very slowly) but I managed to beat Oprah's time on my first try!

I was diagnosed stage 2a on 2/16 based on t3a biopsy returned from a mole scraped off right front torso.  Had wide excision surgery with sentinel lymph node biopsy on 2/25 where two lymph nodes were removed from right armpit area.  I sit here in my bed reading all your stuff trying to see what path lay ahead for me and my squad.  Not clear at all.  Being treated at Inova Melanoma Center in Fairfax, VA.

Thanks for letting me introduce myself!

Neil D

 

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Sorry. I really don't wish to be here reading all your posts. But I am. I'm really pissed  I appreciate your info - and I figured I should introduce myself and perhaps be able to find the good in all of this.

Me: I'm a Caucasian male 46 years of age.  About 74 inches and 225 pounds.  Father of 5 with my oldest at 21 and youngest at 12 (three in college this September).  I own a small business with 10 employees.  Been very active past 2 years and got into shape and began using "Loseit" app to record every crumb of food I ate since 5/2014 through today.  I lost forty pounds at my peak weight of 215 last September.  My running progressed in that last year I ran two marathons (very slowly) but I managed to beat Oprah's time on my first try!

I was diagnosed stage 2a on 2/16 based on t3a biopsy returned from a mole scraped off right front torso.  Had wide excision surgery with sentinel lymph node biopsy on 2/25 where two lymph nodes were removed from right armpit area.  I sit here in my bed reading all your stuff trying to see what path lay ahead for me and my squad.  Not clear at all.  Being treated at Inova Melanoma Center in Fairfax, VA.

Thanks for letting me introduce myself!

Neil D

 

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Mat's picture
Replies 15
Last reply 4/18/2016 - 6:30pm

I'm very encouraged to see the numerous posts by folks that have had success with ipi/nivo.  After progressing on other standard treatments over time, I moved on to ipi/nivo in January.  I have my third infusion this week (and have been fortunate to date with mild side effects).  Here's my question--most folks that have done ipi/nivo did it without prior treatment.  I believe that the clinical trials were only open to treatment naive.  If correct, the (impressive) data and response rates from the trials are limited to treatment naive.  Are there any folks that have done (or are doing) ipi/nivo following prior treatments and, if so, how are you doing?  (I have not been scanned (other than routine brain MRI) since starting ipi/nivo.)  Thanks.

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Maria C's picture
Replies 16
Last reply 3/3/2016 - 11:41pm

Hi fellow warriors - 

I am 7 months into a mucosal melanoma diagnosis that went from Stage III to Stage IV at the first set of scans after my initial surgery. It seems I keep falling into this "rare" category - not only having mucosal melanoma to begin with, but having the first mets in my brain (rather than liver, lung, bones). The first brain tumor was treated with gamma knife (they found 2 on the actual day of the procedure), then I began the nivo/ipi combo which sent me into the hospital within a week with the "rare" side effect of uveitis (retina detachment of both eyes). Months after that episode, I now have had all 4 combo infusions and another gamma knife procedure (an MRI found 2 and then a 3rd was found the day of the procedure).

On the BIG PLUS side, one lingering tumor in my pelvic area shrunk from 13 ml to 6 ml to now 3 ml (3 separate scans), the 5 brain tumors that were gamma-knifed are all in their death stages, and the latest MRI - taken after my 4th 2-drug combo infusion - shows NO NEW BRAIN TUMORS. So fingers crossed the immunotherapy is kicking in and controling the brain mets?

My question is, has anyone else on this board with brain mets also responded to the ipi-nivo comb with a similar result? I'm not clear about the trajectory of brain mets with melanoma - does it usually progress or does it sometimes go away by itself? In other words, can we be confident this is a response to the treatment?

I would also love to connect with anyone who also has a mucosal diagnosis....a search on this forum brings up only dated posts (latest were from 2013). 

Very grateful to find this community and am finding some much-needed inspiration - and reality check - as I read through all your thoughtful and honest posts. Thanks so much for sharing, all.

 

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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davekarrie's picture
Replies 8
Last reply 3/2/2016 - 8:37pm

Hello all warriors and caregivers, I have been on Taf/mek since November and it worked great to shrink my lung/abdomen tumors and my neck vertebrae tumor.  We added Keytruda in about 6 weeks ago and my last scan a few weeks ago shows the lung tumors are growing and my abdomen tumor is growing, it grew nearly 2cm to 3.3cm.  My oncologists say the Keytruda could be swelling the tumors, but my question is how much? Has anyone that has been on Keytruda seen swelling of tumors then regression? If so how much?  We will be scanning the end of March after our trip to Orlando through the Jack and Jill foundation for late stage cancer ( a great resource for those with young kids that can take a trip if selected).  If the scans continue with progression we are onto the Opdivo/yervoy combo.

Thanks for any advice help and never give up!

Dave

Live life to the fullest and enjoy each day! #noonefightsalone

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maxresultsbc's picture
Replies 6
Last reply 3/4/2016 - 11:11am

I have been very fortunate thus far I believe with my treatment. I am 43 and was in good health lol. Diagnosed quickly with an aggressive Stage 4 Melanoma that spread from my rectum to my pelvis and my liver. I have completed 3 rounds of the opdivo/yervoy combo and must within each 3 week period only a few bad days each time. With that said, the last 2 weks itching has reared its ugly head and then some. I started off trying cooler shower fragrance free soap. Then added benadry, then dr prescribed periactin, and has since switched my to vistaril. Nothing seems to slow this itch monster down. Anyone with any helpful advice on the matter would greatly be appreciated. Thank you in advance, your fellow cancer destroyer!!

 

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Polymath's picture
Replies 13
Last reply 3/1/2016 - 1:36pm

Greetings fellow warriors,

Recent heartbreaking post by pookerpb, and others along with the lingering thoughts of inspirational fighter Artie, I can't get this question out of my mind.  When is enough, enough?  When do you finally say I am tired of being cut, pricked, biopsied, infused, drugged, radiated, and having your entire life revolve around Dr. appointments?  Don't get me wrong.  I'm not giving up anytime soon, but the frustration of going through treatment after treatment only to continue to get worse, does not give a person a lot of hope.  My geographic isolation costs my family tens of thousands of dollars a year in travel expenses to see a specialist.  When do you say the family financial considerations outweigh adding another few months, or maybe years to life? Compared to some on this board, I'm lucky, but that ever-present doubt, knowing its just a matter of time. Yes, perhaps the next treatment or clinical discovery will be the magic bullet, and that's what keeps you going, and at the same time you are always thinking, maybe not. Then there's the love of family, my goal since diagnosis was to just see my daughter graduate high school.  These things keep you fighting. Still, I remain curious as to how others are facing up to these most difficult questions?  I suppose pain management and overall quality of life probably drive much of the equation, and it is deeply personal. I know others must feel like I do, and I'm curious as to what you think.

Aloha, Gary

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lmhl's picture
Replies 5
Last reply 3/5/2016 - 7:24am

My husband passed away one year ago from melanoma-nodular-first noted midline on the bridge of his nose.  He had surgery, radiation for 6 weeks, the mandatory one dose of dacarbazine before he started ipi.  He completed 3 doses of ipi before he had a seizure and intracranial bleed (at that time we discovered the melanoma spread to his brain).  They stoped the ipi and did WBR.  He died 4 weeks later.  

My question-after he stopped the ipi, the melanoma could be seen rapidly superficially  spreading over his upper body (chest, shoulders, neck).  It changed daily to the point where it was mostly covered.  I have still been trying to make sense of this disease and can not find any information about this rapidly spreading melanoma.  Was it because the ipi was stopped?  Was it just an agressive melanoma?

The doctors waited 7 months before starting systemic treatment.  Would it have made a difference if he was treated sooner?

Thank you for your help.  There is so much knowledge shared on this forum.  I only wish I had found it sooner.

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/29/2016 - 3:42am
Replies by: Kim K, jennunicorn, Anonymous

I've recently been diagnosed, and my doctor said to let my blood relatives know as they are now at increased risk. My question is, how far out on the family tree do I go? I've told children, siblings and parents. Should I also tell my cousins?

I'll be seeing a surgeon this week, so I'll ask him as well, but thought I'd get some input here as well.

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pookerpb's picture
Replies 24
Last reply 3/6/2016 - 3:38pm

Hadn't given an update in a while. Just waneed to share our decision to have hospice come in. After 3 years different trials rhat worked initially and then have eventual disease progression, my husbands heroic struggle with this disease will come to an end. Ad a last ditch effort he was scheduled for IL2 3 weeks ago but due to disease progression was too sick just days before. After being home for 2 weeks now, we called hospice in and he no longer is limiting narcotics for pain in fear of addiction. He has pain relief and rest peacefully now. Jad several weeks to preparr and he even at a too young age of 45 has accepted was is to be. Please pray for his continued comfort and comfort for myself and our two young teen daughters who are struggling with this so much.

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sister of patient's picture
Replies 5
Last reply 3/1/2016 - 11:55pm

Hello. I want to say first that my heart goes out to all of you and I thank you, sincerely, for all the sharing you do - reading your advice and learning about your experiences is absolutely invaluable!!

I've joined as I am a caregiver right now to my sister - she's stage 4, metastatic - numerous organs and bones involved. Started the T/M combo two weeks ago and is experiencing phenomenal results in tumour reduction, however, they seem to be causing massive headaches, which leads to vomitting, which leads to having to stop for a full 24 hours. We haven't made it through this 2nd week without interruption - so, it's more like she's only had the drugs every 2nd day this week. Her doc wants her to stop every time she even has a fever but she's more than willing to weather the fevers - it's the headaches that we can't get under control.

Anyone else experiencing this? And, if so, how do you treat it? The thoughts of not taking the drugs cause her alot of anxiety because they are otherwise "kicking ass" against this horrid disease.

Also, we are in Ancaster, ON (Canada) and she's being treated at Juravinski Cancer Centre (in Hamilton). If there is anyone also undergoing similar treatment in this area, I'd be interested in hearing who may be the best specialist/oncologist she could possibly see.

Thank you so much for any response!!!

My best thoughts and wishes to all of you!!!

Barb

 

 

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Suzi's picture
Replies 16
Last reply 3/3/2016 - 7:33pm

February 2016 had surgery to remove melanoma from my shoulder, was thought to be .3 but came back 1.05. 2 weeks later had 2 lymph nodes removed, got a phone call tuesday saying there was 50 cells in the Sentinel lymph node and the second was clear. Said I had Micro Metastatic Melanoma. Waiting for My first oncologist appt on March 3rd.
My surgeon said he did not think I needed anymore surgery. So do you think I will have to have treatment?
This has all happened so fast, the spot showed up in December, my dermatologist thought it was basil cell and was shocked it came back as melanoma. They have been showing the picture around and no one would think it is.
Any advice would be appreciated.
thanks,
Suzi

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