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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kellygrl's picture
Replies 17
Last reply 7/6/2013 - 9:32pm

My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

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Jessmoon's picture
Replies 8
Last reply 7/5/2013 - 3:10pm

My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month.  Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy. 

Today, Dr. Markovic at Mayo Clinic, has recommended a different treatment, Leukin.  He would inject this daily for 14 days and then be off the medication for 14 days.  This would continue for 3 years.  He does not prescribe Interferon because it does not increase survival time and has many side effects. He is also concerned about Yervoy, because studies have shown that 5% of patients died during the research studies while taking the medication.  He has been using Leukin for over 10 years and has seen good results, plus he reports minimal side effects. 

Has anyone been on this medication? Any suggestions?

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Richard_K's picture
Replies 4
Last reply 7/5/2013 - 12:33pm

Yesterday started out good and then just continued to get better from there.  First, in terms of traffic, the drive into New York City was the best I can ever remember.  Traffic was very light with no holdups anywhere even though I forgot to bring our EZ-Pass.  Second, my derm evaluation started early and went fine with no issues.  Next, I had my blood drawn at NYU and went on to see Dr. Pavlick.  No problems with my exam AND BOTH my creatinine and bilirubin were back to normal.  I was given another six week supply of pills and officially start my 41st month on Zelboraf.

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k.s's picture
Replies 2
Last reply 7/3/2013 - 7:36pm
Replies by: k.s, 1derdog

Anyone else have both diseases?

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Anonymous's picture
Replies 1
Last reply 7/3/2013 - 3:41pm
Replies by: casagrayson

I am 19, never been to a tanning bed, and have no family history of skin cancer. In 3 months a dark, misshapen mole with a yolk appeared on my temple. After removing it and sending it to a pathology lab, they found that it was atypical and possibly melanoma in situ developing. However, I am confused and getting antsy because my Derm is sending the biopsy in to a melanoma specialist for a second opinion, because the first pathology revealed a traumatized nevus (?) and asked if I had previously had surgery in that area or an injury. I have not had any injury or surgeries on my face, so now I am not sure what my Derm is thinking or what to expect back on the second opinion. Any similar experiences?

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NYKaren's picture
Replies 13
Last reply 7/3/2013 - 2:09pm

Well, it's done. Eleven mets instead of seven. Doc believes it's because the MRI they use for the Gamma Knife is many times stronger than than the standard MRI--it picks up much smaller mets.
I enjoyed lots of sedation--the metal headpiece wasn't fun but livable on drugs.
He's optimistic that in 28 days new MRI will show stable mets & no new growth, then on to PD1.
The case was long--arrived @ 7:30 am and left @ 3:pm. Tired & resting now.
Thanks,
Karen

Don't Stop Believing

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Kim_H's picture
Replies 10
Last reply 7/3/2013 - 11:45am

Hello! I've been on Zelboraf for almost 7 months now and the side effects are still happening just as bad as they were when I first started taking the drug! Does anyone know if they'll Ever subside or stop all together?? Thanks for any insight that can be given.

I have cancer, cancer Does Not have ME!

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Hi,

So some of you may remember me from a while ago. I had vulvar melanoma stage II clear SNB (5 years ago). That was my 4th melanoma and according to the doctors nothing spread. Last PET was probably 5 years ago and it came back clear. I am now 35. I have had crazy symptoms over the past month and at it turns out I have had a stroke. They doctors have no idea why (I don't have a single red flag for stroke and there has been no stroke in my family) and they say that my symptoms don't match that of a stroke because I am having issues all over. My symptoms are dry mouth, dry eyes, disoriented which comes and goes, shortness of breath, burning in arms/pins and needles, when walking at times I can't tell where my feet are being placed, numbness on face (both sides), sometimes food/water tastes smells weird and the oddest thing is my toesnails have horizontal ridges. I have had an MRI of my brain which shows the stroke and an MRI of my spinal cord which shows nothing. I have had a CT scan of my head which showed a sinus infection and a CT of my chest which showed a very small nodule. I had a nodule about 7 years ago and it's probably the same one. No one was concerned about it.

So then I started reading. I read an article about a girl whose first sign that her melanoma spread was she had a stroke. Has anyone every heard of anything like this on this board?

Thanks,

Everymoment

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flvermonter's picture
Replies 1
Last reply 7/3/2013 - 8:56am
Replies by: Tina D

The ups and downs with melanoma is so frustrating. Good news: we went to a tecommrnded radiation oncology in Ocala today. he is going to radiate the lung cancer and melanoma st the same time. he ordered a petscan to review first before the radiation and will stasrt the radiation treatment end of next week. he is also introducing us to a medical onc to get my husband in one of the trials. Moffitt wanted to do separate radiations snd said he no medical onc, just the radiation. never understood that.

bad news: took my husband to er tonight with a 102 fever. he has an infection where the drain was ( Moffitt removed it yesterday). now the petscan for tomorrow has yo be cancelled for a week and treatment moved out another week.

we were thrilled to have a doctor who said yes let's treat both with radiation at the same time.. and let's get you in a trial.

Hugs to all, patients and care givers.

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Tracy Chicago's picture
Replies 2
Last reply 7/2/2013 - 11:16pm
Replies by: lunchlady, Gene_S

Please read the following article http://articles.mercola.com/sites/articles/archive/2013/07/01/vitamin-d-benefits.aspx and then add your comment about your melanoma story. This Dr. Mercola has missed the boat big time with this article and needs to be corrected with real life stories! 

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mclaus23's picture
Replies 0

Hello :)
My father has been battling stage IV melanoma for several years.
He was treated with Ipi and most recently the clinical trial drug PD-1.
He had a very rare side effect on the PD-1 and can no longer take it.
He has 2 masses on his adrenal glands which grew 1/2 inch since he stopped pd-1 which was about 4 weeks ago.
He had a total of 5 infusions.
The adrenal tumors were there with Ipi so he's pretty stable at this time.
I hope the Zelboraf will work for my father.
I would love to hear any feedback from anyone on this drug, side effects, current prognosis!!

Thanks so much in advance!!!!

Margaret

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deardad's picture
Replies 2
Last reply 7/2/2013 - 5:04pm
Replies by: deardad, benp

Hi just wondering if anyone knows how benp from Darlinghurst is doing? He hasn't posted here for a while. Hope you are doing ok.

Nahmi from Melbourne

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I am 19, never been to a tanning bed, and have no family history of skin cancer. In 3 months a dark, misshapen mole with a yolk appeared on my temple. After removing it and sending it to a pathology lab, they found that it was atypical and possibly melanoma in situ developing. However, I am confused and getting antsy because my Derm is sending the biopsy in to a melanoma specialist for a second opinion, because the first pathology revealed a traumatized nevus (?) and asked if I had previously had surgery in that area or an injury. I have not had any injury or surgeries on my face, so now I am not sure what my Derm is thinking or what to expect back on the second opinion. Any similar experiences?

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pamkepler's picture
Replies 1
Last reply 7/2/2013 - 3:38pm
Replies by: 5374brian

My husband has been diagnosed with metastatic melanoma oct 2012. He has been on Yervoy, Zelboraf, and now anti pd1. I was looking for caregivers of patients that are on this same journey:) Blessings to those fighting patients and caregivers!!!

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Anonymous's picture
Replies 12
Last reply 7/2/2013 - 12:23pm
Replies by: Anonymous, Richard_K, Janner, HopefulOne

I was diagnosed with MM in Dec. 2011. I had a WLE 1 full cm. margin to level of fascia one week after being diagnosed. I went to an oncologist a month later, even though my derm said it was not necessary. The oncologist said, "They took a pretty big chunk out of your leg." She reassured me that I had done everything that is required for my stage and that my scar looked great. I know that I have learned a lot about this over the last year and a half and I wanted to get opinions from all of you on my path report. I have visited this site often over the past year and have finally built up the courage to join. I realize that support is necessary forever. I am a 35 year old mother and I always worry about this cancer returning. I sometimes feel like I worry about this too much and I could use your advice and opinions. I know you are not all drs.but I believe patients have a lot to share too, especially on the more personal levels. Thank you. I am also wondering if anyone knows anything more about this study that was just published in the, Journal of American Surgeons. When I read studies like this I realize that this is something that will affect me forever. I do appreciate my life and try to live each day to it's potential, but some days I wake up with MEL on my mind.

http://www.journalacs.org/article/S1072-7515(13)00225-1/abstract

The original mole was one that I had forever. It started to change after my pregnancy. My daughter is now 10

FINAL DIAGNOSES: Melanoma, narrowly excised in planes of sections examined (skin, left medial lower leg, shave biopsy)
Histological subtype: spitzoid
Breslow thickness: .31mm
Clark level : II
Ulceration: none
Mitotic rate: none
vertical growth phase: no
vascular invasion: no
angiotropism: no
neural invasion: no
microsatellites: no
features of regression:
Early (TILS) Yes, non-brisk
Intermediate (angiofibroplasia with or without TILS): No
Late ( fibrosis and loss of rete ridges) : no
precursor lesion: none identified
predominant cell type: spitzoid
microscopic description: Sections of a scoop excision of skin reveal an atypical compound melanocytic proliferation. The junctional melanocytes are plemorphic and show both prominent nucleoli and nuclear pseudo inclusions. There are expansile nests and single cells with focal pagetoid upward migration. The underlying papillary dermis contains fibroplasia. Patchy perivascular lymphocytic infiltrates and a rare nested melanocytes. Dermal mitotic figures are not identified.

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