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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Anonymous's picture
Anonymous
Replies 5
Last reply 3/13/2012 - 9:34am

Hi,

 

I have to travel over 180 miles round trip to my oncologist on a regular basis. With the cost of gas, we are going broke!

Does anyone know of any organization(s) that helps cancer patients pay for the cost of gas.

Thanks

Michael

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Luvmycuz's picture
Replies 2
Last reply 3/7/2012 - 7:39pm
Replies by: KRob, Lynn1962

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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Luvmycuz's picture
Replies 4
Last reply 3/6/2012 - 3:11pm

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/6/2012 - 3:15pm

Hello everyone,

I am Stage 1 patient, almost 8 years post-diagnosis.
For 3 weeks now I have persistent sore throat and it scares me very much. I went to the PCP who did strep nest: negative. The ENT didn't find anything suspicious in the throat also when he used the mirror to look down to the larynx. However, he said that it could be acid reflux related because the entrance of my esophagus is raw and inflamed. He prescribed omeprazole. Well, after 1 week on omeprazole, it is not much better. I cannot locate the pain: sometimes it feels on one side on the throat, sometimes on another when I swallow. Have anyone experienced anything like that???? This sore throat drives me crazy. Thanks for listening.

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Lynn1962's picture
Replies 3
Last reply 3/20/2012 - 11:31pm

Well the right groin lymphenodectomy in January went well -- they took 15 out altogether, and the only one that was positive was the one original sentinel lobe....and that one had just a very minute number of micro mets. Currently have some mild lymphadema that is being address with massage and PT. Feeling great at this point, and went back to work yesterday!

Getting ready to start Sylatron next week, and was wondering if anyone could share their experiences and strategies for dealing with the side effects. Hopefully, I will be able to tolerate it long enough for it to be beneficial...

Also, for those of you who sit  and work at the computer all day, what worked best to keep the leg swelling down as far as seating, elevation, movement etc.?

Thanks! Although I don't post often, I do read the posts and I am truly inspired by the people on this board! It is a great resource!

Lynn

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ElaineLinn's picture
Replies 8
Last reply 3/9/2012 - 2:17pm

just wanted to give you all an update. Today is March 6, I have been in the hospital since friday having siezures. They found a 1 1/2 cm tumor on my brain that has to be removed on Wensday.  I am scared to death but I also know it is all in Gods hands.

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yoopergirl's picture
Replies 2
Last reply 3/6/2012 - 7:36am
Replies by: Linny, ElaineLinn

I am so disappointed when I saw the oncoligist today he said no more Yervoy because of my hospital stay and he felt the side effects were severe enough that I could not take the last treatment. I asked him does he think the 3 treatments would be enough, he didnt

 have an answer for me. He just took out the Yervoy pamplet and read from it, he said he will see me in 3 weeks and at time will do a chest xray. I made up my mind I am calling the Melanoma center at UW Madison and see if I can get in to see a specialist there. He tapering me off the prendisone for 5 weeks time and I hope soon I can get my eyesight back to normal, last drops go in on Thursday.  yoopergirl

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Lori1976's picture
Replies 1
Last reply 3/5/2012 - 10:45pm
Replies by: Janner

I had a Stage 1 MM resected in 2/2000 and most recently a biospy shows MM insitu.  What are the current recommendations on surgical margins? I will be having additional surgery at the end of the month to make sure they got it all but just wondering what to expect.  I'm sure things have changed in the last twelve years.

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Mrsgkr's picture
Replies 6
Last reply 3/7/2012 - 7:04pm

My husband Gary was diagnosed with stage 3c back in September 2011. He had a wle and lymphadenectomy on Dec 8, 2011. He has already had a recurrence and no treatment has been started. He had yet another biopsy done on March 1. No call from the ordering doctor yet, but we were able to go to the hospital and get a copy of the report. It was finalized and sent back to the ordering doctor the following day. This makes my husband feel like this doctor doesn't want to do anything to help. I am going to call other doctors tomorrow for my husband to see. Maybe one of them will help. Doing some form of treatment is better than none at all.

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Cspan's picture
Replies 13
Last reply 3/8/2012 - 1:31pm

On February 4, 2012 my husband passes away from melanoma. Although I never posted much I did read you posts every single day. The support I received from all of you was a life line. Howard was diagnosed with a scalp melanoma in February 2011
He has a radical neck dissection and high dose radiation over the summer. On Labor Day weekend we walked 5 miles. He came home and coughed up blood. He had 4 rounds of advanced biochemo during the fall and one dose of high dose IL 2.
On February 4 th I came home to him talking jibberise. It spread to his brain, he had a massive stroke and died 4 days later. He has a peaceful passing surrounded by our 2 sons and myself. I held his hand and told him it was Ok to go, he took one last breath and died.
He had worked up until 4 days before he died. Howard was a young energetic 62 years old.
The grief is very hard, we had a very good marriage of 32 years
Thank you all for sharing all the ups and downs...you are all an inspiration
Claire

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Rebecca and Bob's picture
Replies 8
Last reply 3/6/2012 - 10:38am

We got Bob's CT and MRI results and all is good, so we will hang on to NED and celebrate tonight. They said he could come back 4 or 6 months. They are finally saying six months which is great for us, I think we will keep it at 4 and then when he goes in July that will be 3 years from his last surgery. If all is good at that time we will feel better about 6 months.

Thinking of everyone else dealing with Stage IV melanoma and praying for a cure daily. 

 

Rebecca

Believe

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Theresa123's picture
Replies 3
Last reply 3/12/2012 - 8:44pm

I thought I was doing so well on Yervoy...during my shower this morning I found a nasty big nodule on my back.  That with increased pain and night sweats I am scared.  Help.  I called my Docs and left messages.  No answers.  I guess I am sc*wed.

Terri

Stage IV

Every day is a miracle.

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Lori1976's picture
Replies 5
Last reply 9/19/2012 - 11:45am

I'm wondering if anyone else has both Melanoma and Crohn's Disease? I was diagnosed stage1 MM in 2000, NED until 2/12 when a biopsy showed MM insitu again on my abdomen.  In 2004 I was diagnosed with Crohn's Disease. It has been quite challenging treating an autoimmune disorder with a cancer history. I need my immune system in terms of keeping MM at bay, but it is that same immune system that is overactive in my intestines causing my body to attack itself.  I am not a good candidate for ant-TNF therapies and the immunomodulators also carry a cancer risk.  I am surely not the only one to be diagnosed with both diseases and I'm really searching for anyone with some advice. My doctors are at a loss, despite being treated in a University setting.

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I'm wondering if anyone else has both Melanoma and Crohn's Disease? I was diagnosed stage1 MM in 2000, NED until 2/12 when a biopsy showed MM insitu again on my abdomen.  In 2004 I was diagnosed with Crohn's Disease. It has been quite challenging treating an autoimmune disorder with a cancer history. I need my immune system in terms of keeping MM at bay, but it is that same immune system that is overactive in my intestines causing my body to attack itself.  I am not a good candidate for ant-TNF therapies and the immunomodulators also carry a cancer risk.  I am surely not the only one to be diagnosed with both diseases and I'm really searching for anyone with some advice. My doctors are at a loss, despite being treated in a University setting.

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/5/2012 - 10:48pm
Replies by: Janner, IMAlawMan

Hello everyone,

I had a mole removed and the following pathology report came back:

1) The specimen is a punch biopsy of skin present as as multiple H&E sections on one side. The pathological process is that of a proliferation of melanocytes confined to the epidermis. A single nevomelanocytic nest is also present within the superficial dermis, best appreciated upon the examination with special stains. Lesional cells are arranged in plump nests with foci of pagetoid extension noted. May of the nests are enlarged and demonstrate bridging between adjacent rete ridges. Atypical cells also extend down follicular epithelium to ally. Within the dermis are infiltrative lymphocytes and histiocytes with focal fibrosis.

2) The histologic feature on H&E staining are quite concernIng, with markedly atypical cells a focus of pagetoid extension and prominent architectural disorder. However the overall immunohistochemical staining characteristics are reassuring. Because this lesion extends to the lateral surgical margins and because of its uncertain biological behavior, re-excision to ensure its complete removal and to allow for further histologic evaluation is strongly recommended.

Doctor wants to take more out and says that if it was melanoma, they would have said melanoma.

Any help you guys could provide would be greatly appreciated.

Thank You in advance.

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