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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Richard_K's picture
Replies 24
Last reply 9/4/2012 - 9:14am

 

Hi everyone,

I had scans this past Monday and yesterday met with my doctor for the results – NO CHANGE from previous scans.  It’s now been 28 months since I started on Zelboraf and 19 months since the PET scan stopped lighting up.

I get a through physical exam including blood work and EKGs (three of them).  My doctor and her staff consider me a “boring” patient.  It’s great to be boring!

I got another six week supply of pills with next scheduled scans for July 30th.

Dick

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Anonymous's picture
Replies 7
Last reply 9/4/2012 - 12:43am
Replies by: Janner, chalknpens, Anonymous

Curious.  Shopping around for new derm.  Found one I like but she reads her own pathology, and sends out for stains if necessary.  Thought that was odd.  Is that ok?  She is a teaching Derm with research part of her practice that has med students - but not associated with any major hospital that  I know of?

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aldakota22's picture
Replies 13
Last reply 9/3/2012 - 11:59pm

Had scans last Wed. on  8/22.Saw Dr.Pavalick yesterday at NYU Clinical Cancer Center and she was unsure of the results to the scans.Will be getting some of the  questions answered within the next week.The way she reads the report I am at least stable but may be NED.Will wait till I hear from her before I do my happy dance as she calls it if I get to that point.For a time line for all you out there I am 11 days short of 1 year on "Z".God has been good to me and I keep all of us on this site in my prayers.I fight this cancer with the love ,support and help of my sweetheart , family  and all of you.Will hopefully give you awesome news as soon as I find out sometime next week.Beat the Beast.    Al

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himynameiskevin's picture
Replies 14
Last reply 9/3/2012 - 11:46pm

Sorry I've been MIA, I've been checking up, just haven't quite had the energy to post. These medications and WBR can really take a toll and figured it's be best if I just hunkered down, get my mind right, and rest the best I could until I feel somewhat normal and comfortable. Actually these were Brenda's orders, and she was right. :)

So to update: and hopefully not repeating myself too much..

 I started WBR on the 8th, and continued once a day every weekday, until the 28th. Done with that for now. Was a breeze. Fatigue is the only issue that might be from the WBR. No hearing, sight, or headache issues I'm aware of. I'm still taking a steroid for swelling. 8mg n the morning and 6mg at night. Luckily they've got me tapering of already. The steroid is the worst with all it's undesirable side effects. But sure is helping my appetite. Back up to normal weight. Not sure how swollen my face will get this time, I’m looking like a “John Lovitz Bobble Head”. Uncomfortable yes, but a I’d take a swelling face over a swelling brain any day. My energy is a little unpredictable with some of these pills and ruckus going on inside. Some parts of the day are good, great and bearable, some not so much. But I’m hanging in there, just a little tired from time to time. I'm also taking 120mg of Temodar at night 3 hours after eating, no problems with it at all.

Future plan is still the same: Rest and feel better everyday, listen to my body and do what it says. Get some scans. Hope for stability/clarity or a manageable situation in my brain. Increase Temodar? Then get off the steroid completely ASAP and try IL-2 again? Maybe a Temodar/Zelboraf combo?

We’ll see. For now I’m just trying to feel better today than yesterday and see what happens. Go from there. Somehow I’m still here, and doing my best to savor this gift. :)

I'll try and be more active on here again real soon. Thanks for being by my side.

Love and good thoughts to all of you. -Kevin

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Kelly7's picture
Replies 7
Last reply 9/3/2012 - 11:37pm
Replies by: Ali, NYKaren, Anonymous, LynnLuc

About 6 weeks after his las Yervoy injection my brother developed severe diarrhea and stomach pain. Took the doctors 4 weeks to properly diagnose his colitis. 35 lbs later, not being able to work, and deathly ill,  now, he is in the hospital on an IV of Hydrocortisone 100mg- IS the RIGHT drug???

He is also receiving morphine for pain, however, he is still in pain. Has this happened to anyone else before? If so, besides the steroid, what pain meds did they give you?

Thank you,

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Hi everyone, I've been reading all your posts since my boyfriend was diagnosed march 9, 2012, thought it was time to finally make an account.  I have learned so much here, and am very grateful that you take time out of your day to post your experiences.  Just wanted to say hi, and i hope everyone is feeling good today, and will do so for a long time!

Like i said my boyfriend is the patient. Diagnosed Stage 4, no primary on March 9th, 2012.  He just finished yervoy.  Nothing getting bigger, but not shrinking.  I filled out the profile (i know you all want the newcomers to get that filled out).  Also, he has all over body rash right now and itching like crazy.  He had a small rash just on his hips for a few weeks, but after his 4th infusion rash has gone crazy, as well at the itching.  Benadryl helps some though.  Any questions id be glad to answer. 

 

"Give thanks in all circumstances"

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TracyLee's picture
Replies 12
Last reply 9/3/2012 - 9:58pm

Hi y'all,

Still having a tremendous response to BRAF, now in my second week (after completing ipi on 7/29). My neck node, which was looking like an egg stuck to my neck, is now almost gone!

I have a rash, which looks & feels like goose bumps, on my chest/arms/legs. Not itchy.

Has anyone else who's done ipi had the "ipi itch" present this way? Or anyone who's done BRAF?

It is not at all bothersome, and I will happily live with bumpy arms and legs and be able to function again, over the weeks leading up to starting BRAF! (5 lung drains, 2 ER runs, admitted for 2 days, sent home with oxygen ...)

I just want to encourage anyone, who is on ipi, or BRAF. There are many folks who are in such tragic situations here, and I pray for everyone who posts daily. There CAN be a good response (even if delayed).

Praying that everyone has a good day, and for those having a bad day (and we ALL have those), I pray you can find some comfort and coping.

TracyLee

Stage IV May 2011

 

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/3/2012 - 2:23pm
Replies by: Anonymous, LynnLuc, lhaley

Hi,

I am new here and been reading all the post. Thank you for posting the wealth of information.

I have been reading posts about MRI & scans for trials that people are having.

I found out something interesting this week. I have  3month  scans which are: BRAIN MRI, CT Neck, Chest, Abdomen & Pelvis.

 For many years, I was having CT brain/head scans because I am EXTREMELYClaustrophobic. However, one of my doctors convinced me that radiation from the CT  brain/head was not good for me and that I should switch to Brain MRI . So for a few years, I have been having Brain MRI's replacing the CT brain/head scans.

Six months ago, I started a trial that required scans of head, neck, chest, abdomen & pelvis. So I have been having BRAIN MRI, and CT neck, chest, abdomen & pelvis.

This week I saw my scan images and when they did my  CT neck , they also scanned my head.  I am very  upset that my head is being scanned getting radiation and no one tells you. The scan report by the radiologist does not read the head images so you would not know the head is scanned when they do a CT neck

I was under the impression that a neck could be scanned alone without the head. Does anyone know if the neck can be scanned without the head or does the head have to be scanned to get the full neck images??? Has anyone seen their images who have their neck scanned and the head was not scanned at the same time??? Obviously, my preference would be to continue to have BRAIN MRI and ONLY my NECK be scannned without my head.

Radiation/scans are a necessary evil for cancer patients but why not try to reduce the amount we get if we can!

Thank you for taking the time to read my post. I sincerely appreiate your imput about your CT neck scans.

Tommy

 

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dellriol's picture
Replies 1
Last reply 9/3/2012 - 2:00pm
Replies by: aldakota22

In February, I had a brain met that hemorrhaged. That's how I found out I had progressed to Stage 4.   I had lost use of my right arm and leg by the time surgery could be done.  I went through rehab and regained use and nearly full function.  Then started Zelboraf.  Now, I have pain in the arm that was paralyzed.  The hand is swollen and I can't close it to a fist, the shoulder spasms and shoots pain when I extend my arm or try to pull on things (like  closing the car door) and I am back in therapy trying to get use back.  Has anyone else had similar symptoms, either with the brain surgery or with the Zelboraf?   

This ain't no hill for a stepper.

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Gene_S's picture
Replies 1
Last reply 9/3/2012 - 11:09am
Replies by: Anonymous
 
Excellent video for those of us who want to learn about some of the causes of our disease, and possibly for some help in fighting it.
 
Best wishes, Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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