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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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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Kellie-T's picture
Replies 3
Last reply 3/6/2012 - 11:05am

For those that are taking Zelboraf; I'm experiencing joint pain which seems to come and go (changes from left wrist/hand to right wrist/hand and left shoulder/right shoulder). I'm also getting a sore throat which also changes from left to right. Pain in my heels also but that was expected. I also run a low fever sometimes. I started 8 pills a day on the 14th of February but stopped on the 21st due to extreme side effects (face swelled and developed terrible rash). The doc reduced the dose and I started back on the 24th of February at 6 pills a day.

Have any of you experienced any of these side effects? Did you take any OTC's to help with it?

 

Thanks,

Kellie

Life is not by accident. Make every minute count.

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zzzzil's picture
Replies 8
Last reply 3/28/2012 - 1:39am

Hi, I'm in the UK and my girlfriend is Czech... (she has Stage 3A melanoma -- so far!) ...wondering if there are any other UK or Czech users here.. or a recommended community - Thanks so much

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Jewel's picture
Replies 18
Last reply 3/6/2012 - 9:58pm

Hi Everyone,

Please forgive me for needing to rant a little. I just don't understand why SO LITTLE is being offered to Stage 3 people....basically they look you in the face and say you NEED to get worse (stage 4) before we can help you. I'm just frustrated.....and sad for everyone that is fighting this disease.

Best wishes to everyone,

Jewel

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scots's picture
Replies 1
Last reply 3/6/2012 - 7:10am
Replies by: MeNDave

I'm currently a year 1/2 NED. Completed is year of interferon and several sessions of radiation. I see my dermatologist every 3 months. Oncologist every 6 months starting this month. Last scan was in December and it was clear. How often should scans be done? Any opinions or advice would be appreciated.

Scot

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Bob B.'s picture
Replies 45
Last reply 6/15/2012 - 11:42pm

Based on a self-diagnosed melanoma (Stage 1b due to Clark IV, Breslow 0.63-.8 (2 reports), mitotic rate zero, regression etc- innocuous) I had excised in 2010 with no recurrence, I have the impression there is widespread:

   (1)  Overuse of medical tools to treat early Stage melanoma.   Biopsies, Scans, SLNB's, blood tests, etc.

   (2)  Reliance on 1960's Clark to stage melanomas.

   (3)  Underuse of Mitotic Rate to stage melanomas.   Lack of standardization of histology parameters.

   (4)  Exaggeration of the effects on melanoma of UV exposure, understating of UV necessity to fix Vitamin D-  protection against melanoma.

For eight months (since July, 2011)  I have been tracking a second tumor 20 cm from the first (above), self-diagnosed again as melanoma.   About to have it excised WITHOUT a biopsy, pathology to be done afterwards using two independent laboratories.

Any comments on the uses and disuses of medical science to treat early Stage melanomas?

 

 

 

  

The Only Good Legend is a Dead Legend.

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SRS's picture
Replies 10
Last reply 3/6/2012 - 8:02am
Replies by: cltml, kylez, SRS, DonW

I’ve been looking around this site for a few weeks now and am amazed, sometimes scared, but mostly comforted by the stories and friendly advice given.  I, too, have a story and some questions.

First, here is my dad’s story:

 At 50-years-old he was diagnosed with Melanoma in August of 2010 with a primary site right in the middle of his back at 0.95 mm deep with no SNB (SNB was discussed, however his initial oncologist decided against it).  With scans and check ups with the oncologist every 6 months, he appeared NED until November 4, 2011.  Early November he developed a baseball size tumor in his left axilla.  Due to what I believe was a lack of education (and maybe a little denial), he went to his primary care doctor who put him on antibiotics for 2 weeks (another case of lack of education).  As soon as I found out that he had been on antibiotics for two weeks I heavily encouraged that he make an appointment with his oncologist (initial). His oncologist, instead of seeing him, referred him straight to the general surgeon who had removed his primary-site melanoma.  During that appointment the general surgeon told him that he didn’t preform axillary dissections and referred him back to the oncologist.  So, almost one month later in December, the oncologist did what should have been done when the tumor appeared early November and confirmed with PET/CT that the melanoma had spread to the left axillary region (no other spread seen).  Almost another month later, December 27, he finally had the complete axillary dissection and was diagnosed stage IIIc.

Completely unimpressed with the runaround that he was given, we encouraged Dad to move his care to the best within driving distance.  He decided to go with Vanderbilt under the care of Dr. Sosman.  While in the process of waiting for randomization for an Interferon vs. Ipi trial, he developed severe back pain. On January 31, 2012 it was confirmed that Dad had a compression fracture due to lytic melanoma metastasis. On February 13, 2012 PET/CT results showed multiple tumors along the vertebrae (cervical - sacrum), tumor growth back in his left axilla, and multiple tumors in his lung.

He has had radiation to both his axillary region as well as his lumbar and lower part of his thoracic spine.  

Dad is BRAF wildtype and as far as I can make out from his report, HLA-A negative. He does have the NRAS mutation.

Dr. Sosman, after seeing the rapid spread and large tumor burden started him on Carboplatin/Taxol/Avastin February 23.  Zometa starts tomorrow.  He will get his second chemo infusion March 13.  The plan is to scan sometime in the first week of April to see if Dad is a chemo responder.  If so, he’ll complete a 3rd round of chemo before moving on to something else. If not, I understood the plan to be to start Ipi ASAP.  

I have contacted NIH regarding their TIL trials, as I have read that they are some of the best around.   I was told that Dad is not currently a candidate for TIL due to needing treatment now.  It was relayed that he wouldn’t be able to wait the 4-6 weeks for the TILs to be harvested.

I have contacted the University of Cincinnati about anti-PLD 1 antibody trials. Dad would have to show progression on any current tx in order to qualify for that study.

I have contacted MD Anderson regarding trials for MEK 162 for NRAS mutation.  Apparently that trial is on hold.

QUESTIONS:

First, Based on my father’s hx with melanoma (brief, rapidly progressing, now heavy tumor burden), does beginning with chemotherapy and Avastin seem appropriate?

Secondly, where do clinical trials play a role in this treatment process?  I’ve hit quite a few brick walls in seeking out trial options.  Does anyone know of any other institutions that have the TIL trials?

Any suggestions regarding treatment and clinical trials would be appreciated.

Thanks so much!

SRS

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