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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GraemeL's picture
Replies 21
Last reply 9/3/2012 - 8:00am
Replies by: GraemeL, Ashykay, LynnLuc, JerryfromFauq, lhaley, NYKaren, Anonymous

Hi MPIP,

My wife Susan was diagnosed with Stage 3 melanoma in July 2011 and had the lymph nodes in her left groin removed.  Subsequent scans were clear and BRAF negative, so she had interferon which almost killed her.  Two weeks ago on August 13 Susan had a CT scan after having headaches.  A large 31x27x22 mm growth was found in the cerebellum region of her brain.  Growth was very rapid as she had a MRI scan of her brain on March 20 and this was clear.

This melanoma was surgically removed on August 15 and Susan is having 10 sessions of whole brain radiotherapy.  My concern is that melanoma cells have now quite likely spread from the brain to other parts of her body.  Her oncologist says that she cannot go back on interferon and that there is no other treatment available.  I have asked about ipilimumab but he thinks that this is not appropriate.

I would appreciate comments on the best treatment options.  It seems sensible to attack this melanoma now before it gets a chance to establish itself again.  If this highly aggressive melanoma starts growing again Susan's life expectancy could be quite short.

Kind regards,

Graeme

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cloudbrows's picture
Replies 9
Last reply 9/2/2012 - 7:38am
Replies by: cloudbrows, Anonymous, Janner, natasha

Hi!

I just got news from my dermatologist on Friday that the mole he removed from my scalp behind my left ear was a melanoma. Considering what I'd been fearing for the last couple weeks, the news that it was about 0.5mm thick was incredibly relieving. Obviously many of you or your friends and family have been hit with much worse news. My doctor says that his initial excision was technically an evaluative excision and that I need to get a follow-up excision with margins of 10mm.

Has anybody had experience with larger excisions? From reading online, it looks like they're doing much narrower margins than they used to, which is wonderful. I'm wondering whether it'll be likely to require a skin graft and also whether anyone's dealt with surgery on the neck. The initial excision wasn't too bad - the stitches are itching at this point and I can't really turn my head to the right very well, but otherwise it's been fine. But a larger one worries me.

Obviously, though, it's hard to complain when the alternatives were so much worse.

Just curious to hear from other people since I get to wait until September 10th to consult with the neck surgeon.

Best,

Nate

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/2/2012 - 12:07am
Replies by: LynnLuc

Came across this PD1 trial that appears to be recruiting!

http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

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melmar's picture
Replies 3
Last reply 9/1/2012 - 11:56pm
Replies by: LynnLuc, Anonymous

Curious how others on the anti pd-1 trials are doing.  Does anyone have anything new to report?  Had my 6 mos. scans last week.  Spot in lung continues to shrink while one on my back is relatively stable.  Most importantly...nothing new anywhere else!  Hoping and praying for continued success for all in the fight.  

 

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audgator's picture
Replies 8
Last reply 9/1/2012 - 9:18pm

...my onc was VERY pleased. I had a CT scan & MRI today a week after the end of the 2nd phase of my anti-PD1 trial at Moffitt. The MRI showed nothing in my brain just as before. We didn't get the radiologist's report before I left but my oncologist showed me the pictures on her computer. Some formerly big spots in my lungs & liver are now little spots and some formerly little spots were not visible.  So, yeah, I was very pleased too. Now on to the maintenance phase, infusion & scans every 3 months.    Dan

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Here is the link to an article i read where mice that had been injected with melanoma were also injected with viagra, and those mice who got the viagra lived twice as long as the mice who didn't, because viagra has immune boosting effect.  Check out the article, let me know what you guys think?

http://www.myhealthnewsdaily.com/1952-cancer-fighting-cells-boost-viagra...
 

"Give thanks in all circumstances"

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mama1960's picture
Replies 3
Last reply 8/31/2012 - 3:58pm
Replies by: mama1960, Anonymous, awillett1991

Well, I saw the surgeon yesterday regarding node dissection surgery....no doctor in Abilene, Tx has ever done it. So the oncologist is trying to find out where I need to go. Possible Dallas/Ft. Worth, possible MD Anderson. More headaches either way. I feel like there are so many different things to worry about, I don't even know what to focus on. There is the expense end of everything. How long will I be out of work? I only have 10 days paid. How much money will hospital and surgeon want up front?  The actual surgery, recovery, pain, etc. Then after all that, radiation.

It is what it is.

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mama1960's picture
Replies 0

Well, I saw the surgeon yesterday regarding node dissection surgery....no doctor in Abilene, Tx has ever done it. So the oncologist is trying to find out where I need to go. Possible Dallas/Ft. Worth, possible MD Anderson. More headaches either way. I feel like there are so many different things to worry about, I don't even know what to focus on. There is the expense end of everything. How long will I be out of work? I only have 10 days paid. How much money will hospital and surgeon want up front?  The actual surgery, recovery, pain, etc. Then after all that, radiation.

It is what it is.

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chalknpens's picture
Replies 2
Last reply 8/31/2012 - 6:59am
Replies by: chalknpens, Janner

I've read quite a few posts here, but haven't seen one that asks this question: are the three major types of skin cancer all unique and unrelated, or is their a hierarchy, where basal call cancer is the least invasive but can become squamous cell cancer, can basal or squamous then become malignant melanoma?

I am not perfect, but I am enough.

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Tina D's picture
Replies 9
Last reply 8/30/2012 - 5:09pm
Replies by: Tina D, Bruce Davis, Jeff's Mom, Anonymous, awillett1991

I am in my 3rd month of Z. Had an incredible report of NED 2 weeks ago ( still thanking the Lord!) smiley. Have had full range of side effects since starting. Bad rash required almost 3 weeks off after 1st week of tx. Back on at 75% dose since then. Symptoms come and go ( though not as much on the going end of things, haha!). I have joint and muscle pain, sore soles of feet ( that has actually improved over past few days for the first time), photosensitivity, lost most of hair, extreme fatigue, nausea and vomiting, and painful red nodules. But last week, I spent about 8 days in a row down in bed or on the couch for the most part. I am NOT a person who likes to sit around, and this is very difficult to have to do ( Mom of 5, with 2 still scool-age and I homeschool). I had decided that come Monday, I'd call Dr if things hadnt changed. I had pretty good days Mon-Wed evening. Yesterday not so great, and last night temp of 101.2, and N/V, aches, ec. I currently have abt 20 of those painful red nodules.I try to avoid Ibuprofen, ec, for the sake of my liver. I also hate to be a baby abt any of it! I am so thankful to be where I am! But.... should I call the onco? I am his only pt on the drug. He is fanastic, but I do frequent this board to see what others are doing and how hey are making out. Has anyone else had problems with the side effects staying tolerable? If so, what did your Dr recommend? I think the pain and fatigue are my 2 biggest concerns here, and I am perfectly willing to coninue on just as is, if needed. But just wanted to see what everyone else has experienced, and see if there may be something that would help me out.I do take phenergan when the n/v get bad enough, but it puts me to sleep, so I try to avoid it as much as possible.

Thanks all. Any input is greatly appreciated,

Tina

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Anonymous's picture
Replies 2
Last reply 8/30/2012 - 10:19am
Replies by: becky15, Janner

I was diagnosed with Melanoma in Situ about 7 years ago.

The diagnosis came as no surprise seeing as I come from a family history of melanoma. I have been seeing a dermatologist since high school. In addition, we all have several atypical moles. After my diagnoses, the doctor had me undergo a series of digital photographs so we could monitor changes at each visit.

For the first two years after my diagnosis I visited him every three months.

Since, every six.

This last visit, he said that we can make the visits yearly.

This scared me, seeing as like having an additional set of eyes on my moles. However, my dermatologist said he is confident with the vigilance I have shown him the last 7 years that I can monitor my moles myself and then come in for yearly visits. Furthermore, my moles have been 100% stable since my original diagnosis.

I am vigilant. Anything that is new or changes, I make and appt asap, but should I push for more visits? What is the norm?

Thanks. Jenni

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Kelly7's picture
Replies 12
Last reply 8/30/2012 - 8:23am

Im looking for some help or advice...

My brother went through IL2 in February, and then four dosages of Yervoy, ending in June. The scan had the tumors shrinking. Then in July he got headaches. They did an MRI and they found out that his pituitary gland was swollen, so they gave him pregnazone. The headaches went away, but then he got really bad stomachaches. He has been in and out of the hospital now, not able to work, has lost 30 lbs in 4 weeks, and if he eats he either gets diarrhea or throws up. He had a semi colonoscopy a week ago and they found nothing,  and he goes in for a full one tomorrow. 

During the Cancer treatments he never got sick, he never looked sick. Now he looks like a sick patient. He is only 37 years old and it kills me to see him so thin. He cant even think about the Cancer right now, he feels like he is dying, and is spending everyday toppled over in pain.

Anyone know what could possibly be going on?? The doctors cant seem to figure it out!

Thank you for any help!

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/29/2012 - 11:09pm
Replies by: Anonymous, JerryfromFauq, Janner, Everymoment

7 Years ago I had a melanoma removed, it was only .52 and I only needed a WLE. This spring I noticed a small hard lump. The surgeon thinks it is just scar tissue. Previous to this spring the scar was very smooth.. Can Scar tissue show up 7 years later? Thanks in advance for your response. My prayers go out nightly to everyone fighting this disease.

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Anonymous's picture
Replies 2
Last reply 8/29/2012 - 8:50pm
Replies by: FeistyD, melmar

Hi Margo,

 

I am new to this board. I have been reading posts about PD1 and I am  looking for anyone on Merck Pd1 trial.

I am on the Merck PD1 trial in Texas. I am stage 4 and hoping that I too will have shrinkage like you. My first set  scan's, I was stable. In a few weeks, I will have my second set of scans. I am very scared

Margo, I would appreciate if you could post how you are doing to give me hope.

If anyone eles is on Merck PD1 trial, it would be great if you could post how you are doing on the Merck pd1 trial. Any good news of others doing well on Merck PD1 would help me stay strong to get through the scans.

God Bless you all,

Kathy

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alicat's picture
Replies 3
Last reply 8/29/2012 - 4:03pm
Replies by: WayneG, alicat, Anonymous

Dr said that they were concerned becasue there were alot of blood vessels running into the spot they removed on my sons shoulder.  What does that mean?

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