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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Momofjake's picture
Replies 1
Last reply 4/27/2017 - 10:16am
Replies by: momof4boys

Hi there,

Just wondering if anyone has heard from Josh? I don't check in too often, but hoping I didn't miss an update. 

Jake is amazing BTW:) He has gained almost 20lbs and is moving out this weekend to take a class or two. It's 20 min down the road, he can still come grab meals...but he feels like his own guy for the first time. He will be 20 in May. He started this almost 3 years ago, so happy to get to see him feel like a real adult and go have some fun! Brain scan May 21 to see if the SRS worked. But he's not worried about it! 

Always praying for all the daily struggles found here. 

Kerri

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Christine.P's picture
Replies 6
Last reply 4/27/2017 - 2:18am

Greetings fellow warriors - I recently found out that I have new tumors in my leg, hip, and back (primary tumor was in calf 2015) which means that ipi/nivo and long term nivo did not work for me. I am currently waiting for molecular testing results to find out the make-up of the tumor to determine the next step.

One of the options my oncologist told me about is a herpes vaccine that is injected directly into a tumor. I was wondering if anyone else has used this treatment and what their experiences have been.

Thank you.

Christine P. 

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Has anyone have mohs surgery after excision did not get it all?  3rd primary in a year.  The first 2 required a surgeon due to thickness.

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Dear MPIP Community:

This week we were contacted by Schlesinger Associates (www.schlesingerassociates.com), a market research company, that has a research opportunity available for patients in the Phoenix, AZ area. 

They are interested in interviewing melanoma patients diagnosed with Stage III or Stage IV. The interview would be in-person in their Phoenix office and will last 1 hour. Participants will be compensated $150.

If you are interested in this study, or know someone who is, please email Alia.Khan@schlesingerassociates.com by Friday May, 11th  to see if you qualify.

Thank you, as always, for your valuable input. 

Best,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/26/2017 - 12:29pm
Replies by: Bubbles

  Hello--I am new here.  First of all, thanks for all the topics and posts-really helps to know we are not alone!

 My husband was diagnosed with stage 4 melanoma and is now on the Opdivo/Yervoy regimen.  He had his second infusion yesterday  (25th).  His main complaint is extreme tiredness and "cotton mouth".  His glucose level was 222.  He was told to fast the next time he has labs (three weeks away) and see if it comes down.

 Could this be a side effect--or should we be concerned with diabetes and this is something that should be checked now and not wait three weeks? I keep thinking that if it was a big enough concern the doctor would have suggested it be tested sooner.

 Anyone have any thoughts about this?  Thank you!

A Concerned Wife

 

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Anonymous's picture
Replies 1
Last reply 4/26/2017 - 1:15pm
Replies by: Anonymous
wilj264's picture
Replies 5
Last reply 4/27/2017 - 2:25am

Hello.  I am a 36 year old white female who recently developed a dark spot under the toenail of my right big toe.  I don't recall injuring it and it doesn't hurt.  After furiously Googling what this could be, I have made an appointment with my dermatologist but it's not until next Wednesday and I may drive myself crazy worrying before then.  I'm attaching a picture - does this looks more like a hematoma than a melanoma?  It's not a continuous vertical band of pigment, but I'm not sure if it's coming from the nail matrix or not because of its location on the side of my toenail.  Any thoughts anyone may have would be very much appreciated.  Thanks in advance for your help!

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ryanbkyle's picture
Replies 2
Last reply 4/25/2017 - 7:44pm
Replies by: Anonymous, Hriggenbach

Can someone describe mouth sores as a side effect while on ipilimumab?  Are they like canker sores?

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Spl25's picture
Replies 4
Last reply 4/25/2017 - 12:36pm
Replies by: Spl25, Mat, Ed Williams

I recently read that there is a BRAF inhibitor coming out (I think from a smaller biotech associated with BMS) that advertises that it works on osteolytic lesions (bone tumors). This would imply that the older inhibitors don't -- has anyone seen any data on this or had their own bone lesions react to Dabrafenib or Vemurafenib?

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sgreenberg's picture
Replies 6
Last reply 4/27/2017 - 1:37am
Replies by: sgreenberg, marta010, Bubbles, Anonymous

Hi,

After 6+ months of progression-free treatment with Tafinlar/Mekinist, my wife's melanoma brain mets started multiplying and her onco moved her to Keytruda. 

However, the onco also left her on Tafinlar/Mekinist concurrent with the Keytruda - since we had leftover stock of the drugs (our insurer won't cover both).

Now, we're almost out of Tafinlar/Mekinist, and the Keytruda seems to be working.

I'm debating whether to seek out another source of Tafinalr/Mekinist (perhaps go to war with the insurer), or just take her off it altogether. I've found very little info online about the benefits of this combo.

Does anyone have experience with using Tafinalr/Mekinist + Keytruda concurrently, or encountered research supporting it?

Many thanks,

Steven

 

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Joycem's picture
Replies 7
Last reply 4/25/2017 - 3:03pm
Replies by: coltbnme, Joycem, Anonymous

At my skin check today (9 month follow up to removal of deep nodular amelanotic lesion) my derm recommended the Castle Decision Dx test be done on my biopsy specimen in storage.  I agreed since she said it was no cost to me but forgot to ask when to expect to hear results. 

Just wondering what prompted them to start recommending now. Guess I should have asked that too. I saw some older posts here that sounded skeptical and link to Celeste's blog post. Kind of feels uncomfortable to be thinking about percentages and likelihoods of recurrence or spreading as at this point as I had those thoughts tucked away for now.

Possibly just the results of marketing millions being spent?

https://melanomanewstoday.com/2015/07/31/castle-biosciences-receives-funding-decisiondx-melanoma-test/

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/26/2017 - 9:09am

I had a WLE in upper mid back last week.  7 disolving internal stitches and 9 on the surface.  The 9 stitches will be cut out in 4 weeks time.

I have been on a weight loss program for the last few months, through a mixture of cardio and clean eating.   It's been pretty successful, helped my self esteem, and I am keen to keep up the momentum.  I have already entered and paid for a cycling event in Italy in 50 days time.  So being sedentry is driving me crazy!

I went for a 3 mile walk this AM (day 4), and felt OK.  The stitches do feel tight, but not too painful.  But I am unsure how much to push it.  I realise that bike rides would be the last thing I should be doing, as reaching forward would be foolish - but think I would be OK doing increasing amount cardio that isolate my lower body (e.g. step machine, upright stationary bike and maybe gentle jogging in a week or two etc).

I guess I am more wary of when the stitches are taken out in 4 weeks.  Would butterfly stitches help to lessen chances of scar splitting open as I increase activity.  Could I ride a bike in 4 weeks time?

Is it just a case of increasing a little day by day and seeing what works and what doesn't?

Does anyone have any tips for increasing the rate of healing WLE?  Supplements?  Diets?            

 

 

 

Rags

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MovingOn's picture
Replies 7
Last reply 4/25/2017 - 12:20pm

I've completed 3 Ipi infusions (10mg/kg). Most recent infusion on 4/18. Headache started very mildly on 4/13. 4/18 Lab results still show that pituitary function is in the normal range (but lower than past labs). Thyroid output is below the expected range for the first time.

Headache got worse on Thurs/Fri/Sat/Sun. Consulted with Oncologist and went to Urgent Care today (Sunday). Urgent Care consulted with my Oncologist and did a brain CT scan (without contrast). CT result was "normal" but they said it showed buildup in my sinus resulting in a sinus headache. I've never had a sinus headache before in my life, so I hope they are right (rather than this being hypophisitis). Previously in the approval process for a Brain MRI and still planning to get it as soon as my insurance approves it (approval by Tuesday and MRI will then be scheduled for Thurs/Fri or Mon).

Prescribed Hydrocodone and over-the-counter Flonase. Hoping that Flonase results in some output from my nasal passages because I sure don't feel like anything is in them. Maybe this is an allergic reaction headache to the wild flowers in CA this time of year but I haven't experienced this before.

 

Stage 3. Diagnosed Jan 2017 via excisional biopsy (no known primary)

Surgery Feb 2017. Ipi/Yervoy started Mar 2017.

I'm not out of the woods, but I'm always moving on.

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debwray's picture
Replies 20
Last reply 4/26/2017 - 6:39pm

Hi, 

Liver numbers elevated dose 2 of combo. Rechallenged for dose 3 , 23/ Jan resulted in more elevated AST and ALT.

Scans show diseae in Liver , Spine , Pelvis , lung Sacrum and breastbone, Had two shots at radiation which helped but was supporting myself with two hands on washbasisn last weekend heard a crack and fell to the floor.Couldnt get up again andbruising is extensive tho told no fracture.

Have been passed to palliative teams and feel so low as every grab rail, or profiling bed offer tells me things are going to get worse...

I'm 55 and have so much I want to fight for but prior pd1 seems to exclude for so many things.Am being treated in Manchester ...at a specialist centre.Am loving stories of successs with Ipi Nivo, could just do with some for me too.

Anyone know if it is worth trying pembro after nivo ? given different routes....

BTW have..2-3 groin lymph nodes accessible for biopsy easily. Am currently on 4 tabs of dex to help  but could taper if appropriate.. Help please as I don't want this to be the end of the road....

Deb

 

 

 

 

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Willowcaregiver's picture
Replies 6
Last reply 4/26/2017 - 2:41pm

My husband has had 10 lesions in his brain the first 5 were treated sucessfully with SRS Radiation, as were the 2 in the second set. Recently (March 29, 2017) 3 more lesions were found in his brain 4 days later he began loosing balance and motor skills. Upon addmission to hospital on April 3 out was discovered line of the mets was bleeding. He had surgery and 5 days of physical rehab and came home 13 days after being admitted. 36 hours after returning home he had a horrible seizure and was taken back to hospital where out was discovered there was an additional met that had been bleeding in a different address of brain. He underwent a second surgery and in now home doing well. He also has a met to a lung node and a tumor in the tail of the pancreas. Has anyone had 2 bleeds on the brain? Does anyone know what they about the tumor on his pancreads??

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