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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ValinMtl's picture
Replies 6
Last reply 4/22/2011 - 11:23pm
Replies by: Jim in Denver, ValinMtl, dian in spokane, Anonymous

Hi Jim

I haven't seen you on the bulletin board for a while and wondering how you are doing with the ipilimumab/temodar trial.  I have always appreciated your support and wise counsel.  Just to let you know, I'm thinking of you.  Val xx (2nd round of ipi/yervoy)

Live Laugh Love Nothing is worth more than this day!

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awg's picture
Replies 5
Last reply 4/22/2011 - 8:09pm
Replies by: awg, Anonymous, King

Diaganosed in April 2011.

Had surgical excison of site w/clean margins. Sne. Node mapping reveiled 1 or 4  pelvic nodes removed to be positive (superficial node, deep was neg). The plan is a suprficial node dissection (open extraction) on positive side w/ high dose Interferon infusion for 30 days and 3 day per week injection to follow.

My questions is has any had node dissection with robitic assistance vs open method, if so at what facility?

 

In my research the Robotic surgery looks like a much less invasive approach. I am not worried abot scars, but I am looking for a lower infection rate and faster recovery so I may begin Interferon sooner.

 

Thank you All and my prayers are with each and everyone!

 

 

 

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smatlock41's picture
Replies 4
Last reply 4/16/2011 - 4:29pm
Replies by: Janner, MichaelFL

I was just diagnosed with melanoma in-situ clark level 1 on my right cheek. The shave biopsy they sent was .5cm X .5cm. It said the cells were only on the epidermis. They have referred me to a plastic surgeon and said I didn't need to see an oncologist. Has anyone had this on their face and if so how much more did they have to take out. They said once they go back in that is usually all you will need to have done except getting checked every 6 months or so. I'm worried about the scarring and just wanted to hear others experiences. Thanks! 

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Terra's picture
Replies 3
Last reply 4/16/2011 - 7:24pm
Replies by: Terra, emilypen, sharmon

Hi, my husband just started a trial of P13 K and Mek inhibitor two weeks ago.  The rash has certainly started on his face but also some swelling - does anybody know if inhibitors might cause some swelling - I don't recall it being one of the possible side effects.

 

Thank-you,

Terra

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Hi everyone, I posted here a week ago about the lymphoscintigraphy (FYI I endured it, the peole were SO NICE, even let me bring my ipod to calm my nerves. Used no lidocaine. Stung like a bitch for about 5 secs, then it was over. 2 shots, pain in the ass, but not as strong as ME). The next day after that test I had surgery, wider excision for where the mole was on my chest. I was put to sleep and they took out a wide section and went deep (my mole was 3.8cm deep). They also did the biopsy under my arm of my lymph node.

Now one week later I am still healing. Like I said before, it's a pain in the ass, but not as bad as I had thought pain-wise. I can do this. Healing is going slow, though. I know it's only been a week, but sometimes feels like forever. Since I had the surgery on my upper mid chest, I've had to wear this compression bra ever since I got out of the OR. This huge incision on my chest hurts more than the smaller incision under my arm where my lymph node is, but I have a feeling it's going to get worse.

Got a call today from my surgeon's office. It wasn'y the surgeon, but someone (a nurse maybe?) that had my results for me. She said she didn't want me going all weekend without any results. Anyways, the chest area excision was clear, no cancer. But the lymph node under my arm had cancer in it. When my surgeon took out my lymph node, she said she could tell it was cancerous because it was darker than the ones around it. The person on the phone today said that my surgeon will want to do more surgery and take out more lymph nodes to biopsy, but she will talk to me more about that when I meet with her next week on Wednesday. I asked if they had a new stage for me, and she said no, the surgeon will discuss that with me next week. I'm currently a stage II.

I read somewhere on here that if you have cancer in your lymph node, then you're automatically upgraded to a stage III. Is that true?

Had anyone ever had to go back and do more lymph node biopsy? Did you have to have a drain? I didn't have one the first time but I want to prepare myself just incase I get one the second time.

After I meet with the surgeon, I have an appt with my oncologist later that day to discuss my path results. Because of the biopsy results this just about insures that I'll have to have some kind of chemo, right?

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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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