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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MarcusW's picture
Replies 2
Last reply 2/6/2013 - 10:57pm
Replies by: 5374brian, Marcia1

First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

My father's melanoma began on his penis, which, I understand, is very unusual. After partial amputation, the melanoma spread via the lymph nodes in his groin to his stomach. He experiences a great deal of pain and eating makes it a lot worse.

He received six doses of Decarbazine, which helped enormously. He was scanned twice, each time after three doses, and, on each occasion, the tumours had either shrunk or stabilised. About six weeks after the last dose of Decarbazine, my father started to get quite ill again - he started to lose weight rapidly again and the abdominal pain returned with a vengeance. It was the oncologist’s opinion that, if the melanoma had begun to grow again so soon after the last dose of Decarbazine, more Decarbazine was not the way forward. He was therefore offered Ipi. Almost three weeks after the first infusion, a large patch of vitiligo has appeared on his arm and he has constant abdominal pain, especially in his right side. I am aware that this could be his kidney, and blood tests revealed that his kidney function was not optimal. However, given that they went ahead and gave him his second infusion yesterday, I am assuming that they considered it safe to do so.

My father is now telling me that a lump has appeared in his stomach. Am I being hopeful, or could this all be evidence that he is responding to Ipi already? I have read many times on this site that depigmentation and inflammation of the tumours are all positive signs. I would appreciate your thoughts.

Thank you,

Marcus

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Replies by: MiamiAllen

Kim asked me to post for her.  I " My doctors think I will have durable remission as no one with complete response with IL-2 plus 30 months has ever had a recurrence".    Hooray for you Kim.  Send those positive thoughts our way. 

Love and Light

Carole K

PS  NEVER EVER GIVE UP HOPE.  There are many of us who have been through some very difficult times and have moved forward.  Let us all help you.  Hang in there.

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/6/2013 - 3:51pm
Replies by: bioguy, Tim--MRF

Anyone know of a good dermatologist in the DC Metro area?  I'm in Bethesda, so north of DC would be ideal, though anywhere in the area would also be fine.  Thanks so much. 

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Becky C.'s picture
Replies 5
Last reply 2/6/2013 - 9:09am
Replies by: Anonymous, JerryfromFauq, Becky C., Janner

Hi, was wondering if anyone has seen this melanoma prediction calculator at melanomaprognosis.org. You enter in your individual factors and it gives average survival rates. I know the doctors don't really like to look at these average survival rates, but it seems fairly accurate, based on what my doctor has told me and from everything I have researched. Only thing I don't  understand is that the 5 and 10 year survival rates go down. It's my understanding that when it gets that far out, the chances of recurrence goes down dramatically. I would like to hear what other peoples's opinion is of this.   

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First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

My father's melanoma began on his penis, which, I understand, is very unusual. After partial amputation, the melanoma spread via the lymph nodes in his groin to his stomach. He experiences a great deal of pain and eating makes it a lot worse.

He received six doses of Decarbazine, which helped enormously. He was scanned twice, each time after three doses, and, on each occasion, the tumours had either shrunk or stabilised. About six weeks after the last dose of Decarbazine, my father started to get quite ill again - he started to lose weight rapidly again and the abdominal pain returned with a vengeance. It was the oncologist’s opinion that, if the melanoma had begun to grow again so soon after the last dose of Decarbazine, more Decarbazine was not the way forward. He was therefore offered Ipi. Almost three weeks after the first infusion, a large patch of vitiligo has appeared on his arm and he has constant abdominal pain, especially in his right side. I am aware that this could be his kidney, and blood tests revealed that his kidney function was not optimal. However, given that they went ahead and gave him his second infusion yesterday, I am assuming that they considered it safe to do so.

My father is now telling me that a lump has appeared in his stomach. Am I being hopeful, or could this all be evidence that he is responding to Ipi already? I have read many times on this site that depigmentation and inflammation of the tumours are all positive signs. I would appreciate your thoughts.

Thank you,

Marcus

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First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

My father's melanoma began on his penis, which, I understand, is very unusual. After partial amputation, the melanoma spread via the lymph nodes in his groin to his stomach. He experiences a great deal of pain and eating makes it a lot worse.

He received six doses of Decarbazine, which helped enormously. He was scanned twice, each time after three doses, and, on each occasion, the tumours had either shrunk or stabilised. About six weeks after the last dose of Decarbazine, my father started to get quite ill again - he started to lose weight rapidly again and the abdominal pain returned with a vengeance. It was the oncologist’s opinion that, if the melanoma had begun to grow again so soon after the last dose of Decarbazine, more Decarbazine was not the way forward. He was therefore offered Ipi. Almost three weeks after the first infusion, a large patch of vitiligo has appeared on his arm and he has constant abdominal pain, especially in his right side. I am aware that this could be his kidney, and blood tests revealed that his kidney function was not optimal. However, given that they went ahead and gave him his second infusion yesterday, I am assuming that they considered it safe to do so.

My father is now telling me that a lump has appeared in his stomach. Am I being hopeful, or could this all be evidence that he is responding to Ipi already? I have read many times on this site that depigmentation and inflammation of the tumours are all positive signs. I would appreciate your thoughts.

Thank you,

Marcus

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bikerwife's picture
Replies 3
Last reply 2/6/2013 - 5:24am

Lynn had gamma knife Monday when doing scan they found not 12 but 22 mets. They treated him for 4 hour but he could not lay on table any longer so they will do it again on February 18. most were pin head size. 

scan for body next week

Lynn said he will not stop fighting 

What God leads u to he will. Lead you through

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My Mother, who is 86, had her 1st dose of Yervoy on January 21.  She has State IV Melanoma - started at vulva and is now in her lung.  Last week she started having uncontrollable diaarhea.  She did dehydrate and is now in the hospital.  She was given steroids yesterday, but still has diaarhea and they even checked for C Diff, which was negative.  Has anyone else had this problem and if so, how was it treated?  She is to have her 2nd dose next week, but I'm thinking it will be delayed.  Thank you for any information.

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mama1960's picture
Replies 5
Last reply 2/5/2013 - 7:31pm

Hi, everyone. I do a pelvic and abdominal CAT scan tomorrow. Results a week later. First scan since July when a spot showed up in right groin lymph node. Had been doing scans since 2008 with no issues. I had really convinced myself that I had had beat it, so was in a state of shock when it came back abnormal. Had a full dissection done at M D Anderson. They took 28 nodes and only one was hot. I feel like that is pretty good, however it was rocking around in my body for 4 years. So, right now I really am torn as to what I expect. Hate Scan Week!

It is what it is.

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Angela C's picture
Replies 7
Last reply 2/5/2013 - 7:23pm

I got good news recently and wanted to share for those who might be interested. I am on the trial at Mass Gen in Boston that combines MEK162 and BKM120. I had my first CT scan last week and after less than two months on the drugs I have 16% shrinkage!! All tumors have responded. This is the first treatment in over two years that as been able to shrink my stubborn adrenal gland tumor. I am very excited and encouraged by the results, but really don't know what to expect long term. Hopefully more shrinkage! Now I have a brain MRI tomorrow and hope that things are going to be okay there. It's my follow up scan to the SRS I had in October.

Just wanted to share the good news!

~Angela

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buffcody's picture
Replies 2
Last reply 2/5/2013 - 12:43pm
Replies by: Tina D, awillett1991

My oncologist at the University of Michigan, Dr. Lao, read and reported Thursday on the scans done  the previous week.  My brain MRI showed the two tumors that had been shrunk in December through SRS were stable, with one of them smaller, though the other did show some hematoma.  The PET scan was clear exepct for a suspected met in the left buttock.  Recommendation was to watch and wait to see if this very small supposed tumor grows with scans taken again in 7 weeks.  Dr. Paul Chapman at Sloane, whom i have been seeing for second opinions and saw again this morning, agrees but has more doubts that what is showing up on the scan in my butt is actually a met.  He recommends if it grows to SRS it.  It's very nice to think I have seven weeks to live and not be treated, just having finished my ipi infusions four weeks ago.  Side effects from that, fatigue, rash, and itching, have quieted down but are still with me every other day or so.  Never quite sure what is going to pop up when.  But Dr. Lao ranks me among his "best" 5% patients on ipi. He means manageable, I think.  No way you know the results yet.  Just know things have been quiet.

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Janet Lee's picture
Replies 4
Last reply 2/5/2013 - 11:43am

My husband was first diagnosed with Stage IV Melanoma this past January 18. He started radiation for pelvic/lower back pain on January 25. Cyberknife for brain lesion was supposed to start soon after. His "mask" was made around January 21st, another MRI was done of the brain on January 27, and the "mapping" was completed for the cyberknife on January 28/29. The radiation oncologist said the cyberknife would be done last week or today (Mon 2/4).

Tonight the radiation oncology department informed us that the cyberknife can't be done until next week because they are short-handed.

I am so upset I can't even think. Don's brain tumor is asymptomatic at this time, but it was my understanding that we needed to get this done asap. Each day is a delay in his treatment. Each day that the brain tumor is not addressed is one more day that makes him ineligible for any clinical trials.

If I'm overreacting, please tell me. We are coordinating his care with Dana Farber, but doing the radiation at a nearby hospital. Should I call the onc at Dana Farber?

Thanks!

Janet

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Tina D's picture
Replies 6
Last reply 2/5/2013 - 7:40am

We are in St Louis, and I completd 3rd ipi dose today. So far I am doing very well and no adverse effects. Have had night sweats, but nothing more. Grateful for feeling well. I know many are in midst of hard days at the moment ...  I am constantly aware of this, on both my good days and those that are more difficult. 

Tina

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Colleen66's picture
Replies 9
Last reply 2/5/2013 - 6:23am
Replies by: DeniseK, Colleen66, Anonymous, Swanee, casagrayson

October 2012 had WLE and slnb, node positive.  November 2012 had surface nodes removed from groin.  December 2012 started Interferon thru clinical trial. Had to stop infusions in January because of severe side effects, Doc won't even let me do the shots cuz my body can't handle it.  Last scan in December showed 4mm lung spot, have had chronic cough for a month, will rescan in March I think.   Just had two more biopsies and very early melanoma, will re excise,  no worries.  

Thing is, I feel better than I have for the past year.  My mood has been incredible, I'm exercising regularly at ymca, appetite is great.  I'm not even worried about future treatments, surgeries, have even accepted death.  

I think I am trying to fool myself.  Aside from feeling great I have been organizing everything.  Cupboards, closets, paperwork, every thing that can be cleaned or organized I am doing.  I guess I'm preparing.  I have never really gotten depressed, had crying spells or emotional outbursts since diagnosis.  I'm just doing what needs to be done.  

Am I not accepting things? Am I falsely happy and is that a bad thing?

I'm wondering if any of you are or have experienced this.  Any input is greatly appreciated. 

Colleen 3B

Live!

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/4/2013 - 11:38pm
Replies by: DeniseK

Hi Denise,

Thank you so much for posting Lazarex info. I live in CA. and also in a clinical trial. I called the lady at Lazarex & I have to complete a form so that a decision will be made to help me with my costs.

Did you have to complete a form? How long did it take for a decision to be made to help you or not help you.  What did Lazarex agree to help you with?/

The lady was vey busy and  did not tell me much over the phone.

Denise, thank you so much for taking the time to answer my questions.

Betty

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