MPIP: Melanoma Patients Information Page

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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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TerriNGa's picture
Replies 3
Last reply 9/30/2010 - 4:44pm

Hello Everyone, Came here n 2003, with Mel. wide Etc clear margins. Today Iam back because mel. is back running in my body like crazy.(Just found out Friday) not going back to Emory, just went to a local Cancer Dr here in Columbus Ga,and this man is really on the ball. Get PET scan, & 2 blood works done Monday, to see if I can do a trail In  Bethesda , Maryland. For the first time since this all began, I finally feel like someone is paying attention.I do have some new questions- Like NCI in Bethesda is it any good? Kinda scared of the pet scan. should I be trying to go to MD Anderson?Just any info would really help. If any of u use to be around here in 2003 I went by the name memega. Thanks everyone.

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Rocklove's picture
Replies 2
Last reply 10/4/2010 - 2:00am
Replies by: Anonymous, washoegal

I finished bio-chemo 3 months ago and  have increased in tingling and some pain in the feet. Recently it has also got to my fingers and hands. It does cause problems with every day functions like walking, driving and typing.

The doctor has prescribed gabapentin. Started 3 weeks ago with 100mg 3xday. Now 300mg 3xday.

The Doc also referred me to a neurologist. Does anyone know what I might expect when I see the neurologist?

Not sure what they can do as far as tests and medication.

I was told by my melanoma oncologists the neuropathy could go away in about a year. But am hearing of people having the problem for years.

I'm dum on the subject...and would appreciate some help to understand.



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Lori C's picture
Replies 6
Last reply 10/1/2010 - 10:02am

Will is still vomiting despite doing alternate Compazine & Zofran.  I am forcing fluids into him as much as I can .  He is not urinating much, which worries me, because he's drinking a fair bit.  The hospital said to bring him to the nearest ER if I thought he was getting dehydrated.  I will give the meds one more day to work but I'm getting frantic.  He's so tired.

This is the sickest he's been so far and it's pretty discouraging.  The chemo nurse said that given the clean brain scan she was quite sure this was chemo related, but of course, I'm worrying it's the cancer spreading.

Just a very discouraging day.

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emilypen's picture
Replies 8
Last reply 9/30/2010 - 9:45am

Hi All,

Just wanted to give you an update. My husband is participating in a combo drug study :

Which is a combo study of 2 drugs, one that works on the P13K pathway and one on the MEK pathway ( which is in the same pathway as BRAF).

It's been 2 weeks and the change in him is astounding, to me at least, the docs are of course more circumspect, but my hubby can tell the pain is getting less every day, he actually forgot to take his morphine for 2 hours the other night... which is amazing as he is on 60mg slow release twice a day and before the drug was taking breakthrough pain meds at least once a day.

His energy is up, he's sleeping better, apetite is good and for the first time in a long time he's really eager to get back to work!... :-) so my fingers and toes remained crossed... the next scan is on Oct 12th.

I'll keep you posted.



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Is it common to run a low-grade fever with Melanoma?  Thank you.

Take Care,

Sherron, wife to Jim

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Linda/Kentucky's picture
Replies 14
Last reply 9/30/2010 - 11:21pm

Does anybody know after going through the Ipi trial what treatments you are excluded from?  Just wondering~~~




I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Replies 8
Last reply 9/30/2010 - 7:35pm
Replies by: lhaley, Anonymous, ktkee, Fen

Some of you may have seen me post before about a lump in my mouth.The dentist found nothing to explain it, or the symptoms. (Dry down the side of my throat is one of them.) Today the Doctor ordered a rush ultrasound, (wrote tumour on the request form - so certain of himself the bugger)  I tried to get him to reassure me,  (he is a nice man, really!) but when I asked if it could still be something non cancerous he would only say I was to come in anytime the day after the ultrasound.  And he put me off work. I still had my composure at this point, after all, it could be nothing ( I read about zebras here all the time). But the hospital called a short while ago, it seems the radiologist upgraded me to a soft palate CT tomorrow. Needless to say I have the jitters- at least I don't have long to wait to find out what's going on.

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Sherron's picture
Replies 3
Last reply 9/28/2010 - 7:09pm
Replies by: Janner, Sherron, KatyWI

Since his (July 2006) original Melanoma started as Nodular Melanoma on the lower right scalp, local recurrence 2 years later, then waited 1 year got it removed in August 2009.  And at time, we knew it had spread to the cervical lymph node on the right.  Since that time the cervical lymph node has got very large, and everything remained the same.  Then the beginning of September (2010), all of a sudden we have  a lumps in right chest area, one lump on the right side of back.....then all of a sudden, lumps on the LEFT SIDE (lower side area)  , one on LEFT  SHOULDER, and 2 more on LEFT SIDE OF BACK.  NOW ANOTHER ONE, IN THE FRONT OF his ear , again (LEFT EAR )..Also another one on his neck (the LEFT SIDE).  He also has 2 lumps in his upper thigh area (small ones), can't remember which side.  Hard to keep up with them, because they were coming so fast  .  Are all these lymph node or tumors, or somse of both.  MY question is did this spread through the cervical lymph node on the right side, or from the blood stream.  Since we have had no WLE, no SNB, no anything, is it likely that the Melanoma is already involved in the organs, possibly.?  I am trying to prepare myself for what is to come.   I am just trying to understand how it spreads.  I thought it mostly stayed on the same side.\This has been really scary since all this has happened within a 3 week span....Now, things appear to have settled down.

Thank you for your responses.

Take Care,

Sherron, wife to Jim

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mifis's picture
Replies 5
Last reply 10/2/2010 - 10:27am

Hi there,

Some of you might remember me. I had a mole removed from my left upper arm in May of this year which was diagnosed as melnaoma in situ and went and had it further excised in June 2010. I had  a Wbig conversation with the plastic surgeon where I asked him to feel free to take more rather than less to get it all. he said it wasn't necessary and would only nee to take a small amount, that you wouldn't want to take too much unnecessarily. When the patho results came back, the plastic surgeon said that was all that was needed but when I insisted I get a copy of my pathology report it said there were still atypical melanocytes at the margins and the pathologist recommended a further excision. I insisted on the further excsion, which happened in August, with the plastic surgeon telling me it was unnecessary, we would get the same result because of my sun-damaged skin etc. Well, what do you know, but it came back again with atypical melanocytes on the margin and the pathologist recommending a punch biopsy an inch or so away from the site. The idea behind this would be that if the sample still came back as atypical we could all assume that it really did mean my skin was just damaged all over. Anyway, the plastic surgeon and the dermatologist both said to stop worrying and that nothing more should be done.

I spoke to my primary care physician and said I would like a second opinion, what did she think and she was concerned abut how the patho report was worded , but wasn't sure where to send me for a second opinion, so I came on here and had some helpful responses. I deceided to seek a 2nd opinion at Sloan Kettering in NYC and have to say, I am amazed at how efficient they are. I wait days and sometimes weeks to hear back from my primary and months for an appointment with the doctor up here in Central New York. I had an appointment within 10 days and had to arrange to get my slides sent from Cleveland Skin Pathology Lab to SKCC. Well, it took Cleveland SPL 6 days to even get my slides into the mail so when I saw the doctor in NYC she hadn't heard back from the SKCC pathologist yet, but she commented that my excision scar was small and she would have taken more. We looked at the original Patho report from Cleveland and she said she wasn't really sure what they meant but she wanted to find out the degree of atypia and if it was severe she would recommend a further re-excision. She called me a couple of days later to say that the pathologist actually says it is still melanoma in situ on the margins. Now, I know melanoma in situ is very treatable, but it feels pretty odd to have been told it's definitely all gone, and now have somone else look at the slides and say it is still there. So, I have had 3 excisions so far and now about to undergo a 4th and am hoping they manage to get it all this time.

Has anyone else had experience with such varied diagnoses? Of course, I am finding a new surgeon to do the next excision and will insist on having the slides read at SKCC as well as somewhere else (not Cleveland).

Also, does anyone have any advise for me?

Thanks, Jennifer

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jwb355's picture
Replies 5
Last reply 9/28/2010 - 10:07pm
Replies by: ValinMtl, triciad, KatyWI, King, joy_

I have been diagnosed with mel. clarks level 4 had surgery on my arm and all lymphnods removed under right arm. Now the oncologist is saying that I need to do a month of interferon but it is my choice. I would like to hear from anyone that is going thru this or been thru it. I just don't know what I will do but need some info before I go any further. Having a PET scan next month and possibly radiation.

Jerry in Ga.

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Anonymous's picture
Replies 2
Last reply 10/2/2010 - 9:44am
Replies by: skysar, Jim in Denver

 recommendations appreciated

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beatricefromPARIS's picture
Replies 3
Last reply 9/30/2010 - 8:06pm

Scans from head to belly show no change or perhaps minor tumor decrease after 6 months interferon at dose of 10 M shot, 3 times a week.

Brain stays clear (in real and metaphorically!)


Mets lungs, liver, bones, heart

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Anonymous's picture
Replies 1
Last reply 9/28/2010 - 7:23pm
Replies by: killmel

Hi Bob,


I saw you post regarding you sayiing:  "Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors."

I am interested in knowing more about the VEGF clinical trial. Would you know the gov clinical trial number for this VEGF trial or any information/link where I can read about this trial.

You mentioned that if this trial failed then you would do IPI.

I am just curious why your doctor just does not put you on IPI???

There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

What does your doctor say about IPI???

Thanks for replying


Good Luck

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Anonymous's picture
Replies 20
Last reply 1/23/2011 - 2:30pm

Hi IPI Warrior


I read MPIP posts & some IPI warriors have remain stable & unfortuanately some have progressed. Cannot find any post from IPI warriors in REMISSION and NED?????

IPI has got alot of press at ASCO & in the news getting approved by FDA. I read 1 in 3 respond BUT is the response "remission"???

This might be a stupid question but how good is this drug??? Has any reports indicated this drug has brought IPI users into remission??? or has this drug just prolonged progression??? What exactly does "RESPONSE" to this drug mean to the IPI warrior

It wouuld be interesting if IPI warriors posted their disease status since taking IPI.  I wonder the results of IPI users who have finished treatment. Just a thought?? It would be encouraging for IPI users to see some IPI warriors that are NED after taking IPI.

Hope we see  many posts from IPI warriors that are NED!

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skysar's picture
Replies 5
Last reply 9/28/2010 - 3:12pm
Replies by: ipi in DC, ValinMtl, lhaley, Jim in Denver, Anonymous

I haven't posted in a couple of weeks due to an acute bronchitis infection which flared up while I was at MDA the day after my first treatment.  Ended up in the ER on Sunday and was given fluids and 750 mg of Levaquin.  Developed a rash a couple of days into the antibiotic so we are not sure if it is from IPI or  the Levaquin.  My ENT switched meds to Doxycycline and my rash has progressed.  So for the last 2 weeks I have been very uncomfortable and my next treatment is Wednesday!!!

MDA did give me an antihistamine, which didn't do anything.  I have been taking oatmeal baths, using Sarna lotion, Benadryl, etc.  Today I am trying Doxepin, which MDA suggested.  I have been reading all the posts regarding IPI and the side effects have been mild.  I am hoping this rash is due to the antibiotic, which has happened to me in the past with a different antibiotic and not IPI.

My neutrophils did drop but not enough to not take the Temador.  Yeah!!!




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