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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Hawaii Bob's picture
Replies 2
Last reply 4/15/2011 - 8:20pm
Replies by: Carol Taylor, MichaelFL

Hi everybody.... I just returned to Hawaii from the Mainland where I had my 6 month check up at the Siteman Cancer Center, Washington University in St. Louis, MO....... Still holding NED at Stage IIA -- 2 years and 8 months out from initial treatment ...... When I was diagnosed in August 2008, it was hard, nigh impossible, to conceive being NED going on three years...... 

So doing the happy dance while praying for those who are battling active disease ......

Aloha,

Hawaii Bob

 

Stage IIA, 2.40mm Superficial Spreading Melanoma on the bottom of left foot 2nd toe, adjacent to the Great Toe; WLE amputation of the toe and SNB of one lymph node in the left inquinal nodal region negative for mets; mitosis "not observed in the dermal region" (on 2nd path report), Surgery performed at Siteman's Cancer Center, Washington University School of Medicine, St. Louis, MO

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mike_nj's picture
Replies 5
Last reply 4/17/2011 - 8:00pm

Closing in on my 7 year point after the stage 3B  diagnosis.  Yesterday's X-Ray of chest looks clear from report and next week I visit to UPMC for followup.  As far as I know I am NED.

Wanted to post to share some hope with my fellow patients as they await scans and X-Rays and other tests

Still taking my assortment of supplements.

All the best to all patients and caregivers

Mike from NJ

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killmel's picture
Replies 36
Last reply 10/28/2013 - 11:09am

Hi Everyone.

.

Many MPIPERS have taken IPI over the years with various clinical trials. Now, the FDA has approved this drug, more people will have access to IPI.

I thought it would be nice if we posted our experience with IPI and results on the drug. Some of us are just starting taking this drug like Jill & Eric,

while others are in the middle of treatment, like Valin. Most importantly, are those who courageously finished treatment and have seen results like

Donna fromVermont. If you got mixed results on IPI or no results, it is important to share your experience so other  can anticipate possible realistic

outcomes on IPI.

 

Please share your experience with IPI to give hope & encouragement for those who will be embarking on IPI treatment.

Thank you for feedback.

Douglas

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boot2aboot's picture
Replies 29
Last reply 4/17/2011 - 1:21pm

i am BRCA2+ so i already have gynocological cancer surveillance...my armpit was sore for awhile and i thought i pulled a muscle...imagine my surprise when i found a HUGH lump...i called my ONC and she did a core and FNB along with an abdominal CT, Bone Scan and Mammo....it took the pathologist a really long time to find out what type of cancer it was....i think my doc and i were shocked when i ended up with a melanoma diagnosis....we were expecting breast or ovarian...i know nothing about melanoma, where the primary site is or anything...i am sitting here all alone scared and with lots of questions...she got me an appt with a melanoma onc...i go see her wednesday....but i am in complete shock...and the only indicator that i had melanoma is a hugh tumor in my lymph node.....

don't back up, don't back down

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dian in spokane's picture
Replies 3
Last reply 4/15/2011 - 6:59pm
Replies by: DonW, EmilyandMike

I've been digging around on the site today trying to find the AJCC staging chart. Maybe it is just not here. Does anyone have a link?

 

thanks,

 

dian

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prayin4cr's picture
Replies 4
Last reply 4/15/2011 - 8:10pm
Replies by: ValinMtl, MichaelFL, nicoli

My father (age 71) was diagnosed with stage 4 Melanoma about 2 years ago.

Treated with IL2 first - got rid of Melanoma in hus liver, and shrunk nodes

Treated next with oncovex - mixed reaction - killed some tumor and some grew

Resection - got most, but grew back on nodes

Other treatment - some pill (forget name) - mixed - they did surgery on tumor - now has large gaping hole and substantial tumor, hard to heal

My dad was with a great Melanoma specialist, but now is back with Kaiser's more general oncology.

He was planning on doing Yervoy (was scheduled in 3 weeks to start)

The Kaiser general oncologist is recommending Radiation instead of Yervoy (IPI). 

To me and my mother, it seems like the Yervoy would be the better option.

Any opinions would be welcome.

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My father (age 71) was diagnosed with stage 4 Melanoma about 2 years ago.

Treated with IL2 first - got rid of Melanoma in hus liver, and shrunk nodes

Treated next with oncovex - mixed reaction - killed some tumor and some grew

Resection - got most, but grew back on nodes

Other treatment - some pill (forget name) - mixed - they did surgery on tumor - now has large gaping hole and substantial tumor, hard to heal

My dad was with a great Melanoma specialist, but now is back with Kaiser's more general oncology.

He was planning on doing Yervoy (was scheduled in 3 weeks to start)

The Kaiser general oncologist is recommending Radiation instead of Yervoy (IPI). 

To me and my mother, it seems like the Yervoy would be the better option.

Any opinions would be welcome.

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EricNJill's picture
Replies 17
Last reply 12/12/2012 - 11:03am

I just wanted to update you.  After being denied by the insurance for the Yervoy, Eric's Oncologist had us submit assistance paperwork through Bristol Myers.  Bristol Myers contacted United Health Care and got them to approve the coverage of the drug!

So don't give up, even if the insurance says they will not cover the drug Bristol Myers will work with your insurance company to get it covered.

Good Luck, JillNEric in OH

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I believe ONCOVEX uses GM-CSF and a dormant strain of the herpes simplex virus and is in Phase III Clinical trials.........Hawaii Bob How Absent Reoviruses Kill Cancer

ScienceDaily (Feb. 21, 2011) — Reoviruses are successfully being used in clinical trials to treat patients with cancer. Not only does the virus cause cancer cells to die, it also forces them to release pro-inflammatory chemokines and cytokines, which in turn causes the patient's immune system to attack the disease. New research published by BioMed Central's open access journal Molecular Cancer shows that reovirus infected cancer cells secrete proteins which, even when isolated, result in the death of cancer cells.

Normal human cells are protected from reovirus infection by a protein called PKR. However a cellular signalling protein (Ras), which can block PKR activity, is abnormally activated in many types of cancer and provides a window of opportunity for reovirus infection. A multi-centre study, involving labs in the UK and America, collected growth media from reovirus infected melanoma cells. The researchers showed that this media contained a range of small pro-inflammatory proteins, including an interleukin (IL-8) and Type 1 Interferon (INF-β), which recruited and activated white blood cells, specifically Natural Killer (NK) cells, dendritic cells (DC) and anti melanoma cytotoxic T cells (CTL).

Whilst the exact details behind this mode of action of cell signalling in response to viral infection are unclear, the release of cytokines was dependent on both 'inactive' PKR and a specific nuclear factor (NF-κβ). According to Prof Alan Melcher, from Leeds Institute of Molecular Medicine, "Bystander immune-mediated therapy may well be an important component in the treatment of cancer by reoviruses, and may have potential in treating cancer even in the absence of live virus."

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ScienceDaily (Mar. 24, 2011) — A breakthrough discovery by the University of East Anglia (UEA) and Children's Hospital Boston promises an effective new treatment for one of the deadliest forms of cancer.

Reporting in the March 24 edition (front cover story) of the journal Nature, the researchers found that leflunomide -- a drug commonly used to treat rheumatoid arthritis -- also inhibits the growth of malignant melanoma.

Melanoma is a cancer of the pigment cells in our skin. It is the most aggressive form of skin cancer and, unlike most other cancers, incidence of the disease is increasing. More than 10,000 patients in the UK are diagnosed with melanoma each year. If caught early, surgery can be used to safely remove the tumour but the chances of survival for patients whose tumour is already spreading are very low. Around 2000 people a year in the UK die from malignant melanoma because the cancer has returned after being removed surgically.

UEA scientists Dr Grant Wheeler and Dr Matt Tomlinson conducted a rigorous screen of thousands of compounds, looking for those that affect the development of pigment cells in tadpoles. They identified a number of compounds that affected pigment cell development and have now shown with their US collaborators at Children's Hospital Boston that leflunomide significantly restricts tumour growth in mouse models.

And when leflunomide is used in combination with PLX4720, a promising new melanoma therapy currently undergoing clinical trials, the effect was even more powerful -- leading to almost complete block of tumour growth.

The next stage is for clinical trials to be conducted into the use of leflunomide to fight melanoma. Because leflunomide is already licensed to treat arthritis, this process should be faster than usual and a new treatment for melanoma could be available within around five years.

"This is a really exciting discovery -- making use of an existing drug specifically to target melanoma," said Dr Grant Wheeler, of UEA's School of Biological Sciences.

"Deaths from melanoma skin cancer are increasing and there is a desparate need for new, more effective treatments. We are very optimistic that this research will lead to novel treatments for melanoma tumours which, working alongside other therapies, will help to stop them progressing."

The novel work, which was partly funded by the Biotechnology and Biological Sciences Research Council (BBSRC), highlights the strength of carrying out large screens of compounds in developmental model systems such as the Xenopus tadpole used at UEA and the zebrafish used at Childrens Hospital Boston. The hope is that this approach will lead to the discovery of further compounds to treat different diseases in the future.

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Janner's picture
Replies 17
Last reply 4/18/2011 - 5:53pm

In April 1992, I was diagnosed with a .58mm lesion.  (Stage IB under today's staging system).  Pre-internet days and no books on melanoma at my library.  It was incredibly difficult to find anything in print, and what was written was incredibly negative.  Mostly geared toward higher stages and low survival rates.  The internet and sites like this have become an incredible tool if you don't let them freak you out.  19 years later (and with 2 more primaries in 2000 and 2001), I'm still stage IB.

This place can be scary for the newly diagnosed - especially those who are early stage.  Most stage 0 or 1's move on and don't stay to post here as their anxiety wanes.  So I'm posting as one of those long time stage I people who is still stage I after MANY years.  Heck, it's hard to remember my life without melanoma.

Best wishes to all,

Janner

 

1992 - ..58mm, Clark Level II, 1 mitosis

2000 - in situ

2001 - .88mm, Clark Level III, 1 mitosis

Tested positive for melanoma genetic defect, CDKN2A

http://www.MelanomaResources.info

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Hi there.

I am starting on the MDX-1106 trial next week. I just wondered if anyone on the boards is part of this trial? I'm hearing really good things about it and it sounds like the side effects are pretty small. I think doctors have a tendency to play down the side effects sometimes. So, I was wondering what other people have experienced with this drug.

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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premedy's picture
Replies 2
Last reply 4/14/2011 - 10:23pm
Replies by: MichaelFL

Just had a cat scan done with the following results

 A new .4cm nodule in the left lower lobe is noted.  New focal patchy and ground glass opacities in the right lung are noted.

 

Spleen - Mild splenomegaly is increased measuring 14.2 cm in craniocaudal dimension, previously 12.7cm.

Abdominal lymph nodes are increased in size and number.  Subcentimeter mesenteric lymph nodes are also increased in size and number

 

Has anyone seen anything like this with the lungs.  I've never heard the term patchy ground glass opacities but it doesn't sound good.  Has anyone dealt with enlarged abdominal nodes?

 

thanks in advance.

"without the bitter the sweet ain't so sweet"

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chatrbox424's picture
Replies 4
Last reply 4/14/2011 - 7:06pm

In August of 2010 I found out I had melanoma and was a month pregnant one day apart so needless to say its been a CRAZY 9 months as it is for anyone facing this diagnosis!!  My thoughts and prayers first off to everyone on here fighting this ugly disease!!!  I've loved reading all the positive attitudes and stories though, its very uplifting!!!! :)  

To get to my questions......my first dermatologist whom I've since left due to feelings of discomfort on my part.....called and told me my results over the phone while I was on vacation.  Upon returning from vacation I immediately had an appointment in which he told me that he got everything with the punch biopsy but felt it necessary to take a wide excision (1cm all the way around).  He also told me the melanoma was .5mm (I'm assuming he meant depth but not sure) and was a Stage1 with a great prognosis and extremely low chances of recurrence....all great news considering the diagnosis at hand.  He only wanted to see me every six months and wasn't very thorough with the full body check and privacy was an issue in his office (at least for me).  So I sought out a clinic that seemed to better suit my needs/wants that said he did the right thing with the wide excision that they would have handled it the same way so that was comforting.  However they will see me every three months along with yearly liver function tests, lung x-rays and eye exams!!  

Upon them receiving my records from the first dermatologist I asked for more specifics on my diagnosis such as mitosis, ulceration, etc. as I know these things have an effect on prognosis.....so she showed me the report in black and white and it plainly said the melanoma was in situ, unulcerated, and 0 mitosis....which I know are all wonderful news....but I'm just confused by whats written in black and white and what my first dermatologist told me....why the difference in diagnosis????  Just made me wonder...not sure if its anything to be concerned about or not so any input would be appreciated.

Thanks A

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Anonymous's picture
Replies 9
Last reply 4/16/2011 - 8:15am

Hello.  

I would like feedback from people experienced with Melanoma staging based on the AJCC staging charts, and what each persons Doctors have told them. I am Specifically interested in stage IIIC but please feel free to add anything, no matter what your stage.

 

Acording to the "staging charts" a person who is a stage IIIC has what is considered advanced melanoma, and with a few variables, the five year  "prognosis" varies from 15 to 29 percent chance of survival.

Is this accurate?

If you have stage III melanoma, and the risk of recurrance is high in the first 5 years, are your chances of survival greater if you get past the 5 year mark?

Is there any way to know where the melanoma will recurr (as in what part of the body)?

Are you in remission if your cancer has been removed?

When are you cured from Melanoma?

What can a stage III person do to prevent Melanoma from returning?

If the "prognosis" for stage III melanoma is so severe, what is the average amount of time until recurrance?

 

Thank you to anyone who helps with these questions.

I realize some of them may seem dumb, but I am trying to understand where someone stands based on the statistics.

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