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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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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Replies by: triciad, lhaley, Lisa13

Hi Everyone,

I just wanted to know who started ipi after finishing gamma knife?  I know Kyle is one of the people, so I wanted to know if there is anyone else?  I havn't had any steroids and I don't want to take any as I know it could mess up the ipi.  I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation.  I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Hi,

I am pleased to announce my new practice location. I will officially be seeing
patients beginning May 1 but will see patients on a case by case basis if it is
medically important to be seen before then. Please feel free to forward my
contact information to anyone who needs to reach me.

Please request a copy of your medical records from The Angeles Clinic and they
can then be transfered to The Beverly Hills Cancer Center's state of the art
electronic medical record. The Beverly Hills Cancer Center(BHCC) can help
facilitate this for you. The BHCC is 1 stop shopping with patient care, imaging
including MRI, PETCT, Breast MRI, bone scans etc., a beautiful infusion center
for chemotherapy, radiation oncology, surgical oncology, full lab, research
clnical trials, psychosocial support and nutrition. A more formal letter will
come soon but I know many of you have been waiting to see me for some time. I
would be honored to resume your care.

I look forward to reconnecting with you soon.

Warmest regards,

Steven

Steven J. O'Day MD
Director, The Los Angeles Skin Cancer Institute
Director, Clinical Research
The Beverly Hills Cancer Center
8900 Wilshire Blvd
Beverly Hills CA 90211
310-432-8900
soday@bhcancercenter.com
Clinical Associate Professor of Medicine USC
Adjunct Professor, John Wayne Cancer Institute

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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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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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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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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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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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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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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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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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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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Jan in OC's picture
Replies 22
Last reply 3/5/2012 - 6:38pm

Hi everyone, 

I am struggling to find the words to tell you that Dirk's battle with this horrible cancer is now over.  He passed away in the early morning hours yesterday, 3/3/12.  He was a wonderful husband and father. He was such a good man.  He maintained his sense of humor through every treatment, but at the end, he was just so tired. I  know he is mountain biking up in heaven, but those of us he left behind are very sad.  We have had 25 wonderful years together and I will miss him!

Thank you all for your advice and support during this journey.

Jan and Stephanie, loving wife and daughter

laughter is the best medicine

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94z28joe's picture
Replies 15
Last reply 3/5/2012 - 6:05pm

My doctor just called me and told me he had my results. He said that he took 26 lymph nodes and saliva gland. He said that everything came back negative. Wow! Such a sigh of relief I can a least breath a little bit easier for now. I know I will have to constantly be vigil and be aware of what's going on with my body, but it's such I great feeling getting the all clear after your life's been completely turned upside down by finding out you have stage 3b melanoma. Thanks everyone ont this board for your support and stories they are such a huge help!

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gtown's picture
Replies 8
Last reply 3/5/2012 - 4:33pm
Replies by: gtown, Janner, DonW

went down to Penn for checkup today. No tests or anything (had clear lung X-rays 2 months ago). The doctor who was filling in for my doctor mentioned that the lack of inflamation found around the excision site was not a great sign, she said it showed the body's immune system when fighting cancer would show inflamation. She said this after being pressed by me (I ask ALOT of questions). Has anyone else ever heard of this before? I guess like many of you, I get anxiety ridden when I go for tests, checkups etc. I have  real up and down days leading up to tests etc. Some days I think I'm doomed and other days I feel positive. I'm thinking about seeing a shrink just because alot of people don't want to hear about it. So anyhow has anyone heard of the inflamation and secondly has anyone gone to counseling over this?   

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