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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Anonymous's picture
Anonymous
Replies 14
Last reply 5/12/2017 - 10:14pm

Just out of curiousity, how many of us are MDA patients? I live in Texas but travel about 4 hours to get there if driving (or 30 minutes by air) but I know people come from all over the country (and world). Each time I'm there I meet really interesting and positive people so I was wondering how many of you go there?

Tex

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Kms's picture
Replies 10
Last reply 5/12/2017 - 7:48pm

I was just recently diagnosed stage 4. Had surgery to remove melanoma from my lung. Was referred to a general oncologist who gave me no hope. Currently looking for specialist in Chicago area. One referral was to.Dr Clark at Loyola. Scared and getting lost in mass amount of information on clinical trials

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Nal64's picture
Replies 1
Last reply 5/12/2017 - 6:18pm
Replies by: Bubbles

 Usually I am just a lurker here on this forum. I follow some people stories closely and look up to them to get information. Celeste, Paul,  and Josh's posts  got me through some really difficult times.  My husband Eric was diagnosed at stage IV  in 2014. His disease remained  regional during yervoy, keytruda and a cavatak trials.  In January a CT scan confirmed mets to his lungs.   He has been out of treatment since then due to fighting with the insurance company to go out of network.  Now Eric has to make a choice. He is being seen by Dr. Luke at University of Chicago  and is about to start a trial that we are not really hopeful about (MGA271 + yervoy)   But it is the only one available right NOW through U of C.  He is otherwise healthy and continues to work full time.  My question is: before starting the trial should we have the large tumor in his shoulder removed so they can start  using it for TIL ?  Is TIL even worth it?  Will NCI or M.D. Anderson accept  a fresh tumor removed by another institution?   If they can, it would save us a lot of time and a trip to Texas.   Has anyone had any success with the glembatumubab trial? ( ideally, it's the trial we wanted to be in)

 Has anyone else had success in getting insurance to pay for one trial while undergoing a different one?   If so, how? We have an HMO through BCBS   And cannot change to a PPO until November. Even then both MDA and NCI  would be considered "a non-participating hospital" and we would have to pay 40% of any treatment.   Anyone who has had some success in dealing with the insurance companies, I would love to hear from you!   Thank you in advance. 

 

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Elaineo's picture
Replies 1
Last reply 5/12/2017 - 6:15pm
Replies by: JWerwa

I found this freckle that I have as my profile picture.  Wry scares right now. I don't regularaly Check my skin so I don't know how long I have it. I only spotted it because it was a sunny day and I have no socks on when a friend began talking about moles. 

Went to doctor yesterday so am waiting for an appointment to see a specialist. Not sure how long it will take but if it is melanoma I don't think I can afford to wait long at all. 

very scared and would appreciate advice on the image. 

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Remi's picture
Replies 11
Last reply 5/12/2017 - 4:01pm

Hi, I just wanted to share my worries with you to see if anybody else has experienced this or if it's just health anxiety. 

I had invasive melanoma removed from the very top of my left arm 3 years ago which was in vertical growth phase so I was told that I had 5% chance of reccurrence (I know that very good and I'm grateful).  I was told I had to have check ups qtrly for 2 years however I stopped after 1 year. (could be something to do with having insurance at the begining but then losing my job with the stress.  They are not as keen to see you once your not paying) I am in Jersey Channel Islands. 

For months now, maybe even a year, I keep aching in that armpit and when I lift my arms above my head the left arm pit looks lumpy compared to the right.  

I showed this to a doctor and she she just asked my to raise my arms and said "oh yeah it does look puffier than ther one but in the best of faith I would say its probably ok" and that was it!  Im not freaking out about it or anything but it's on my mind. 

I am not sure how a lump in the armpit would look or feel.  If I run my hand over it with my arm up its lumps but I put my arm down and I can't feel any. 

Can anybody offer advise?  Thank you in advance x 

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Dear MPIP Community:

We have been contacted by Schlesinger Associates (www.schlesingerassociates.com), a market research company with 15 offices around the US, regarding an interview opportunity that might be of interest to you. 

They are looking for Stage III or IV melanoma patients anywhere in the U.S. The interview will be a 1 hour telephone interview. Participants must also have a PC or laptop with internet access. Participants will be compensated $150 for their valuable time and input.

If you are interested in participating, please contact Alia Khan at Alia.Khan@schlesingerassociates.com by May 16, 2017! 

Thanks and have a wonderful weekend,

Shelby - MRF

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meltedtime's picture
Replies 1
Last reply 5/12/2017 - 1:06pm
Replies by: Anonymous

I was diagnosed with stage 4 melanoma on March 24th. My oncologist wanted me to immediately start the Braf treatment as my tumors were typical of melanoma with the Braf gene.  He said there was no risk, it would either work or not. Side effects would be the same regardless. 

In BC the oncologist have a panel to review drug administration and approve variances, such as providing me with the meds prior to final test results. One doc on the panel delayed the approval as he believed it could potentially increase the size of the tumors if I wasn't Braf positive. My doc overruled through appeal and I started the meds. Thankfully, only for 1 week. I don't have the Braf gene. 

The meds gave me a massive headache within 2 days. And my tumors grew visibly. 7 days wouldn't have made much difference had we waited. Now I have further growth as a result of my oncologists decision to push. 

Make sure to get a true diagnosis before taking the Braf meds.

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luda2259's picture
Replies 1
Last reply 5/12/2017 - 8:23am

Today 5/11/17 my dad had one large excision on his back and bilateral axillary lymph node biopsy. Two moles were excised, he was supposed to have two excisions but the doctor said since they were close enough they did one long excison. The wound on his back was bleeding through the dressing and there is swelling. We figured this is normal, he was afterall cut into. The instructions to go home were to leave the dressing on for 2 days (until ok to shower), remove steri- strips 5 days after surgery, keep any dressing that are on your skin clean and dry. 

A few quesions ..

1. The bleeding is normal right?

2. Since its bleeing through, we should change it? 

 

I felt the instuctions are kind of vauge, dont want to do anything wrong or put him at risk for inection. 

 

Background: shave biopsy April 17th, path. report April 21, surgery May 11 . 

Amelanotic Melanoma, Breslow thickness 3.85mm, Clark Level IV, ulceraton present (approx 1mm) 

Also, the path report says the pathologic stage is : pT3b , does this mean he may be a stage 3? I know they wont know for sure unitl results from the SLNB come back. 

He has not has any scans done yet. 

 

 

Any input in helpful, Thanks, 

 

Luda

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Jeff_in_FL's picture
Replies 6
Last reply 5/11/2017 - 8:54pm

Hi all,

Here's a question that just popped into my head: Just had Excision w/nodes. If everything comes back clean, would a PET scan possibly be a good idea just to wrap things up a little better? 

Just trying to keep things straight in my head. The surgeon took the closest SLN, and said that there was no need to take any others that lit up on the scan because any irregularities would show up on the closest one ...no need to check beyond that point. Hope he's right! Anyway, just wondering how often a PET scan is used after a clean margin, node check.

Just loved those pre-scan injections!

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I recently completed a course of 30 grays in 5 fraction for an aggressive brain met.  Has anyone had this dose and did your hair grow back?  Did you experience any long term side effects from the high dose?  Thanks for your support.

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wayward's picture
Replies 3
Last reply 5/11/2017 - 7:06am
Replies by: wayward, Janner

My wife had noticed an abnomal spot on my back and asked me to goto the doctor I went to my GP doctor and she referred me to a dermatologist. The dermatologist did a biopsy and sent it to the lab and the results was that they found what thay called suspicious cells that could be precancerous. The dermatologist cut out that area along with a margin as a precaution. When they sent that to the lab the results was what he called stage 2 inside melanoma. He described the thickness as three sheets of paper and I'm not sure what that translates to in thickness. He said what happened to me was rare but does happen sometimes. He cut a larger area for a wider margin and the lab results was clear. I did have him do a full body scan and he did a bioposy of a mole but haven't got got the results yet. I will get the stiches out in a few days. I have a follow up every six months for the next two years at least.

The initial diagnosis was very scary but I do feel much better now.

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Scooby123's picture
Replies 4
Last reply 5/10/2017 - 11:56pm
Replies by: Scooby123, Mark_DC, debwray

Hi all hope you all having a good day as can be in a melanoma world. My GP has given me Fluoxetine for hot flushes am having. Think it's the change that I am going through. Anyone had these and had any side effects when on treatment. She said it would be fine but I am always concerned if taking meds that could interfere with treatment ect.

Scooby X

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mrspink's picture
Replies 4
Last reply 5/10/2017 - 9:26pm

My dad was recently diagnosed with Stage IV melanoma. It's been a very rough two months with multiple crainiotomies, raditiaion,starting on the new meds, and just the emotional rollercoster (as most of you know). 

My mom has also turned into his full time caregiver and is doing an awesome job but again it's been a very hard transition. 

So any ideas for a nice Mother's day gift? Usually we keep it simple with a card and flowers which I will do but wanted to also do something to maybe relieve some of the new stress or something she can use in her new role as caregiver. 

 

 

 

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When Shane was in for his brain MRI last night he was in there for a very long time. Longer than any other brain scan. I'm hoping that doesn't mean something negative. It was 25 mins. Anybody else know if that a normal amount of time?

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Shaneswife's picture
Replies 4
Last reply 5/10/2017 - 8:19pm
Replies by: Anonymous, momof4boys, jbronicki, Bobman

Found out today that my company is letting me go. Got bought up by a bigger company so now they are down sizing. Saddest part is that I will lose my benefit coverage for Shane and our family. Shane still has drug coverage benefits but they only cover 90% unless you go to Costco. And his cancer drugs are fedex'd to him monthly from a pharmacy and I doubt you can get your Cancer drugs st Costco. Sigh. Just another setback. Guess I shall have to do some research into compassionate access or funding. Thanks for listening to me rant  

 

Janis

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