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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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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Anonymous's picture
Replies 12
Last reply 9/4/2012 - 8:50pm
Replies by: Harry in Fair Oaks, rbruce, Gene_S, LynnLuc, Anonymous

Hi All,

I am new to the board. I feel very lucky I found you all.

I am wondering what parts of the body are required to be scanned for clinical trials. Is it required for trials to scan from head to toe???

I am in  Merck PD1 clinical trial and have scans every 12 weeks.  These are the scans I am getting: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my left leg, lungs, and on chest. Recently, just became NED. 

I would appreciate you sharing what trial/and or sponsor of the trial and what scans are you required to have??

Thank so much for replying to my post.

God Bless you all.

Marybelle

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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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Anonymous's picture
Anonymous
Replies 7
Last reply 9/5/2012 - 6:36am
Replies by: Anonymous, dellriol, jmmm, john partrick michael murphy

How much increased risk for other future cancers do CT scans create due to radiation exposure?  Is it really true that one CT scan is like 500 x rays?

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rbruce's picture
Replies 17
Last reply 2/15/2014 - 4:02pm

Just got results from my 24 week pet/ct scans. Continued shrinkage! Lung tomors are down about 60% from where I started, axillary lymph node is about 50%, and they couldnt find any activity in my 2 previously noted rib mets!!!!! Dr. said I had best results so far of 7 on the trial and although he didnt test for it, he's sure my tumors expressed the pd ligand. Everyday I read about warriors beating the odds and of ever increasing new research and findings. I have faith that soon, melanoma will be history. Keep the faith qnd God Bless.  Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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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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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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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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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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JC's picture
Replies 25
Last reply 11/5/2014 - 11:54pm
I had a routine Dr appointment yesterday, did bloodwork, palpated my lymph nodes, etc. . I decided to go ahead and get a chest x-ray done, since I never did from a year ago since my 1A diagnosis (figured get a baseline in case would be useful in the future), even though Dr said isn't necessary with an early thin lesion like mine, no symptoms, etc.. He called back today and said there are a few spots of concern in the left lung, and he wants me back today for a chest CT with contrast. I'm in shock. I'm shaking. All this time I've been hearing 95+% survival rate for 1A lesions like mine, 0.3mm, 0-1 mitosis, radial phase, no significant regression, no ulceration, negative node biopsy, and now I've got a concerning chest x-ray, and they want me back today for CT scan. I don't know what to think, I feel like this is the beginning of the end and I'm now on a path to the unthinkable. I have young kids, I'm only in my 30s.

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Susan1985's picture
Replies 3
Last reply 9/5/2012 - 12:10pm

Hi all, my father was diagnosed with Melanoma two years ago this past August and died eight months later. I live in the Atlanta area and I am searching for a specialist for my own skin exams. I have not been to the Dermatologist at all since his death, and I need to find someone I can trust. I live in the northern suburbs of Atlanta but will travel anywhere within reason. Thank you for any and all advice.

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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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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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