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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Bonnie Lea's picture
Replies 1
Last reply 9/30/2010 - 1:19pm
Replies by: Sherron

message on FB from his daughter.....He is a great guy and friend to me this "canadian friend" as he called me.  OH dear God please give him a safe passage.

Just Keep on Hanging In

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debbieVA's picture
Replies 9
Last reply 10/3/2010 - 10:15pm

MPIP family....

I got a call from Kurt's wife, Pam,  this morning.   This Warrior has been through so much.  

He has many friends here...and I just wanted you to send up a prayer for him and his loving family.  

Debbie Stage 4 NED

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Anonymous's picture
Replies 5
Last reply 9/30/2010 - 7:34pm

I have been on many different medicines for pain relief.

I am now faced with my insurance refusing to pay for long-acting OxyContin medicine that my Dr. has prescribed.

Today, I got a call asking me which of the following medcations I would prefer to try: Methadone or Fentanyl.

After a few brief questions, I was told (in the nicest way possible) that Fentnyl patch hasbeen shown to be ineffective in overweight people.

Which leaves Methadone.

I have never heard of anyone using this drug to treat cancer pain and am skeptical.

 

Any advice, opinions, or facts would really be welcomed and helpful.

 

I already take dilaudid for breakthrough pain and was taken off  MSContin due to how long I had been on it.

 

Thank you!

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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.

Thanks,

Rocky

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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 :http://clinicaltrials.gov/ct2/show/NCT01155453

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.

 

Emily

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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~~~

 

Linda/Kentucky

 

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

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Anonymous's picture
Anonymous
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!)

BeatricefromParis

Mets lungs, liver, bones, heart

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