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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carol b's picture
Replies 5
Last reply 3/2/2011 - 11:01am

well ill be back at vandy in the morning at 8:20 for round 2. im so dreading it. i still havent gotten rid of the itchies yet from round 1.any ways, im mostly out of it while im there so im sending u all a bunch of prayers at one time tonite. Take care all.

carol bellinger

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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heg50heg's picture
Replies 4
Last reply 3/2/2011 - 10:54am
Replies by: ShariC, Carver, Janner, washoegal

Hello , ater 3 and 1,2 weks post lymph node dissection under arm pit     i have swollen up spot the size of my fist. It feels pretty hard and I am gonna see my surgeon tomorrow. Has anyone else experienced this after surgery.

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raelynn's picture
Replies 1
Last reply 3/2/2011 - 9:14am
Replies by: NancyGM

Hi  -   My father is 81 and has had melanoma for 2 years. He has had a couple of surgeries, radiation, and interferon. His last scan showed a couple of new spots and the doctor wants him to take Temodar. He also has frontal lobe dementia. Does anybody know if Temodar will affect the dementia or make it worse? Our doctor seemed unsure.

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Hi,

My father is 81 and has had melanoma for 2 years. He has had a couple of surgeries, radiation, and interferon. His last scan showed a couple of new spots and the doctor wants him to take Temodar. He also has frontal lobe dementia. Does anybody know if Temodar will affect the dementia or make it worse? Our doctor seemed unsure.

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Shelly in Switzerland's picture
Replies 5
Last reply 3/1/2011 - 1:20pm

I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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mayeast's picture
Replies 2
Last reply 2/28/2011 - 10:07pm
Replies by: mayeast, MichaelFL

I have been waiting 2 weeks for results. Is this normal? I am anxious to start a clincical trial because I am now stage 4 with METs. Thanks.

Stay in the moment.

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ShariC's picture
Replies 13
Last reply 2/28/2011 - 6:09pm

Hi Everybody - Thanks for being part of such a terrific resource!  I've been reading for a month, or so, and now am hoping to get some advice:  Here's my diagnosis and treatment history:

- I was diagnosed in Mid-July 2010 with Stage IIIb Melanoma after I found a lump in my armpit (it was the enlarged lymph node).  After surgery - complete axillary dissection (22 nodes taken, 1 macromets, 1 micro), my pathology came back as T4aN2bM0 - Stage IIIb. 

- I was told by the local oncologist that he would not recommend interferon and that I should monitor and wait.  I requested to be referred to a specialist.  I was referred to the Mayo Clinic.

- Dr. McWilliams at the Mayo Clinic recommended Luekine (GM-CSF) - a year.  Two weeks on and two weeks off.  He also recommended local radiation treatments to the axillary region.  (I've completed this radiation treatment but haven't started the Luekine, yet.

- Last week, I saw Dr. Rene Gonzales at the University of Colorado Cancer Center as a second opinion.  He recommended Bio-Chemotherapy.  A treatment that includes 5 days in the hospital receiving the following:  IL-2, Interferon, Dacarbanize (DTIC), Cisplatin, and Vinplastine. 

Here's my line of questioning:  I understand that this is fairly aggressive treatment and is unusual for Stage III.  Has anybody gone through something like this?  Are any other major cancer centers providing this kind of treatment for Stage III resected Melanoma?  I like the idea that it could increase my chances for disease-free survival (don't we all!) - he says up to 75%.  But, is this unrealistic?  Also, would this mean that if it does progress to Stage IV that I wouldn't be able to do this treatment?  Hmmm? 

Also...I know that I will just have to eventually (as my Doctor says) "settle on one doctor and trust the treatment path"...I just want to make sure I'm ON the right path! 

Thanks for any and all advice!

- Shari

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TLR's picture
Replies 6
Last reply 2/28/2011 - 5:51pm
Replies by: TLR, Joan C, Anonymous, lhaley

I was diagnosed with stage 1 one year ago (site was right back). Had wide excision, negative SN. Now ultrasound is showing enlarged lymph node in my left neck. Wouldn't this be an unlikely area considering my original location and stage? The doctor has me scheduled for a ct scan on Thursday.

Any insight would be appreciated.

Thanks,

Tracey

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NeilG's picture
Replies 3
Last reply 2/28/2011 - 2:10pm
Replies by: MichaelFL, Becky, Anonymous

I am about to start external radiation on my back for 4 weeks does anyone know the time frame of safe conception after this treatment?  My doctor has said to wait 2 months after treatment but i have also heard 1 year is appropriate.

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emilypen's picture
Replies 1
Last reply 2/28/2011 - 11:35am
Replies by: King

Hi All,

So my husband had been responding really well to a combo study of Mek & pI3k inhibitors but after being taken off the drugs for 3 weeks to allow a rash to subside the tumour in his back has aggressively been growing and even being back on the drugs for 3 weeks has had no effect.

After an MRI on Friday they docs have determined he needs immeadiate surgery to stop the tumour from compromising his spinal cord. And most likely radiation. After that on to a new trial....

so onwards from here.....

 

Any advice appreciated.

thanks,

Em

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Riluzole is drug that is used to treat ALS (Lou Gehrig's disease) and is now showing promise in treating melanoma.

http://www.medicalnewstoday.com/articles/156789.php

For info on a phase 1 trial see:

http://clinicaltrials.gov/ct2/show/NCT01303341

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Hey All

Just wondering if anyone out there who is on a BRAF trial has any experience with bone mets and how the pain levels may have changed whilst on the trial? Craig has just started about 2 weeks ago, for a met in his rib and one in his abdomen. I know its early days, but he thinks the rib one may be feeling a bit more sore, so we were just wondering what to make of this and if anyone else has had similar experiences?

Thanks

Lisa - Aust

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lisa36's picture
Replies 9
Last reply 2/27/2011 - 10:27pm
Replies by: alicia, lisa36, Vermont_Donna, Anonymous, Janner, JoanR, lhaley

It has been a while since I have visited this board.  I keep the entire community in my thoughts and am frequently praying for all effected by this disease.

My first primary was dx in 2006 - Breslow .31 level 4 - SNB neg.  I just had my 5 year check up and was cleared for annual visits and told by my melanoma specialist the odds of this thing coming back are slim to none - Yippee! ....but wait, the next day I received a call from my derm who had removed a mole the week prior stating I have another melanoma.   Derm wants me to go back to melanoma specialist and have the SNB even tho it appears it was caught early.  This 2nd melanoma was a mole that was frozen off over a year and a half ago.  Both docs on mutiple occasions said this is NOT cancer and not to worry.  It started growing back pink -  not the original brown color.  It was then I insisted my derm remove it.   I am very concerned that this mole was not removed and sent for biopsy in the first place and am concerned of the accuracy of the pathology report  because of this.   Anyone have this experience?  Is it possible the mole was benign prior to it being burned off and then grew back malignant?  Is it more likely my doc missed this and burned off a melanoma?  Also, anyone have SNB with such thin lesions?

Below is the path report. Most I understand but a few points are confusing.  Any help with interpretation is greatly appreciated.

The bulk of the process is confined to the epidermis and there is only a small focus of papillary dermis involvement in one or two areas.  The thickness mesuresment seems to be largely accurate although it does extend focally to the base of the specimen.  The lesion would be classified as Clarks level 2 as the paillary dermis is only focally involved in these sections.  Breslows greater than .4mm - There is an asymmetrical melanocytic neoplasm with single malanocytes present diffusely thoughtout the epidermis with minimal melanin.  There is focal involvement of the dermis. Less than one mitotic figuer per high power field was seen.  Thereis a dense inflammatory infiltrate of lymphocytes as well.

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I am about to start external radiation on my back for 4 weeks does anyone know the time frame of safe conception after this treatment?  My doctor has said to wait 2 months after treatment but i have also heard 1 year is appropriate.

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Jim M.'s picture
Replies 4
Last reply 2/27/2011 - 5:40pm
Replies by: lhaley, Sherron, Jim M., Fen

Hi everyone,

 I haven't posted for awhile but I'd like your advice. Two weeks ago I developed some symptoms in the gastrointestinal tract. I get bloated every time I eat, my stools have changed in consistency and I have some abdominal pain. I had a CT Scan and Dr. Weber emailed me the following, "The scan is OK except there is an equivocal area in the small bowel, cause unknown. It is in the ileum which is at the end of the small intestine." The plan is for me to swallow a contrast and have the area x-rayed over time to detect abnormalities in the small bowel (called a radiological study). Stool samples came back normal.

 I know there can be many causes i.e., overeating, not enough water, bacterial overgrowth, too much fiber or cancer. I'd like your input on this and what your experiences have been with GI issues

 God Bless to all,

 Jim M.

 stage 3C

NED 3+ years

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