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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Randy437's picture
Replies 16
Last reply 12/9/2012 - 3:37pm

My scans yesterday were negative - NED for 3 years now after having mets surgically removed from brain, each lung and small inestine.  I also learned that there is a newer genetic test for the BRAF mutation..  Some people (I don't believe it's many) who previously tested negative are testing positive with the new test.

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Tina D's picture
Replies 5
Last reply 12/5/2012 - 7:12pm

Developed a very red and extremely painful eye over the weekend.Very irritated and light sensitive. Saw eye Dr this am & dx is uveitis and synechia ( which is the iris "sticking" to the lens). Off Z for now until further instructions from Oncologist. Being treated with prednisolone drops every hour, and atropine drops 4Xday. My routine PET is tomorrow. This is the 2nd PET since starting Z in May of this yr. Thankful the uveitis seems to have been caught in time to not cause any permanent effects, but I am not sure if this will cause me to be unable to continue on the Zelboraf. I will post when I have scan results, and answers for the next step...

Tina D

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nsabel's picture
Replies 8
Last reply 12/4/2012 - 8:53pm
Replies by: nsabel, audgator, vivian, jim Breitfeller, Tim--MRF, Anonymous

Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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nsabel's picture
Replies 6
Last reply 12/4/2012 - 2:25pm
Replies by: Swanee, nsabel, Anonymous, kylez

Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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Hello, Just wondering if anyone is on IV nutrition infusions to assist in their weight gain, fatigue, etc.  If so...any suggestions in the NY metro area or even out of state.

 

Thanks !!!!!!!!

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samcanada's picture
Replies 3
Last reply 12/4/2012 - 7:26am
Replies by: Linny, samcanada, washoegal

I have read many post concerning scar tissue, but was wondering if anyone has any where the drain was? My husband had a drain for approximately 2 weeks after having nodes in his groin removed last November. What I think might be scar tissue starts just below the spot where the drain entered his leg and extends downward toward his inner thigh. He had been staged at 3A and needless to say I am extremely terrified of a recurrence. Thankyou 

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alabama girl's picture
Replies 8
Last reply 12/3/2012 - 11:49pm
Replies by: sjl, Anonymous, doriniel, DeniseK, POW, alabama girl

My melanoma surgery was a year ago and just recently I have had pain and a hard lump come in the middle of the wle scar. Can this just be scar tissue and does scar tissue hurt after a year? It is white. Not sure whether to be alarmed or not. It does get rubbed alot since it is on the area where the bottom of my bra sits on it. I am stage 3B.

Thanks for any info!

Alabama Girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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natasha's picture
Replies 5
Last reply 12/3/2012 - 3:19pm
Replies by: Liz C, Anonymous, natasha, melissa ann

Dear friends!

       Please ,give me your opinions on the following :

 

        my doc decided to cut off another suspecious mole from my arm 2 weeks ago ,finally it came up as intradermal nevus.

       What is what????? I am worried.

       I know nevus is all good ,but interdermal?? Does it mean invasive and can it be missdiagnosed and melanoma in fact??

      It is 1 year since my initial diagnosys with mnelanoma and it is first mole had been removed since that.

      Nevus meens nothing to worry about ,but intradermal meens it is deeper then epidermis.

      My Doc just said go home and don't worry .he is not very helpful

     Please , share your expierence and knowledge on this subject

     Thank you all for your help and understanding

  

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ksg1111@sbcglobal.net's picture
Replies 3
Last reply 12/12/2012 - 12:27am
Replies by: Josh, Anonymous, FeistyD

I was just diagnosed with Stage 4, mets to lung, spleen, chest wall. Can anyone advise best centers or oncologists  in Southern Californa that I should consult? I live in San Diego. Thank you..

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harmonyvollmer's picture
Replies 1
Last reply 12/2/2012 - 10:46am
Replies by: awillett1991

Hi, I'm new here and I think that I may have FAMM. I'm 23 years old and have had around 10 atypical moles removed with some coming back as having "moderate architectural abnormalities" or just "moderately atypical" and I've had one come back as a "pagetoid Spitz nevus". I have had two abnormal looking moles come back as benign. Every mole that I have had that was atypical in the lab was excised. I have hundreds of moles that look atypical but don't necessarily warrant excision as of now. I have had moles my whole life, and was always warned to watch my moles, but they were all stable until I was about 19. At this time, I got pregnant and I noticed near the end of my pregnancy that I had two bad moles. My doctor suggested this might be due to hormones. But after I had my son, my moles did not stop changing and I typically have several moles removed in a year. I also am growing new moles at an alarming rate. I literally notice bad moles that were not even on my skin a year ago, or that looked perfectly fine a month ago. I have several concerns and I am always anxious about this condition. My first concern is that my paternal grandfather died of melanoma at age 49 in 1964. His daughter, my aunt, died of severely metastasized squamous cell carcinoma in 2007 at age 60. His son, my uncle, was diagnosed with melanoma several years ago, although he decided against treatment and is still fine as of now. My father has had many dysplastic nevi removed throughout his life but never developed melanoma. He has never received full excision, they just do a circle punch and don't do a large margin. My second concern is that my 3 1/2 year old son has developed a few benign looking little moles. They look totally fine, but so did mine when I was his age. I am scared that I passed this FAMM syndrome down to him. Does anybody know if this qualifies as FAMM? I'd like to be genetically tested or participate in a research study but I don't know how to go about doing that. Also, what are the chances of a mole with moderate atypia turning into melanoma, in someone with FAMM, if they don't excise the mole and just leave it on the body? 

Thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/3/2012 - 10:19pm
Replies by: kylez, Anonymous, sharmon, palmspringswalt

Hello,

 

I am new to this form. I am stage 4. My doctor is trying to get me into Merck PD1 trial at UCSF.

Is anyone in the Merck PD1 trial at UCSF and can tell me how you have responded to this drug and what are the side effects (if any) you have experienced. Who is the doctor running this trial and is he nice???

If you at participating in the Merck PD1 trial at a different location, I would still appreciate knowing if anyone is responding to  this Merck PD1 trial and side effects. How often are the infusions??? Do you have to do a biopsy to qualify for this trial??

Thanks you for taking the time to respond to my post.

Carol

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Colleen66's picture
Replies 6
Last reply 12/4/2012 - 1:21pm

I am stage lll, NED after surgery .  A clinical trial was just brought to my attention by my surgical Oncologist yesterday.  There are three options available to me as I am considered high risk.  A clinical trial,. Interferon or watch and wait.

The trial has 3 arms consisting of a) standard interferon treatment.   B) high dose ipi.  C) low dose ipi.  The aim is to see if the ipi with high risk would be better than interferon at delaying recurrence and/or stopping progression.   My Oncologist even said the words "could be a cure for those at this stage"

here is the trial http://cancer.osu.edu/patientsandvisitors/cancerinfo/clinical_trials/Pag....  I am fortunate to have my doctors activily involved in these trials.  This trial is being held nation wide.  On the Page pick melanoma, next Page choose the second trial ECOG-E1609, Dr Kendra.

Any thoughts?

Colleen 

Live!

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