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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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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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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dian in spokane's picture
Replies 8
Last reply 4/16/2011 - 10:19am

I loved Charlie's suggestion for hosted chats, and although no one at the MRF has not answered that post yet, I think we can start it ourselves if some of the long time members just post chat times.

With that in mind, I will be in the chat room today (april14th)at  4:30 Pacific Daylight time, and again tomorrow morning at 8:30 am Pacific. Since someone mentioned that the evening chats are too late for them, I thought I'd try some morning ones.

Anyone can join in chat, but one IS required to register and log in. Don't let this stop you, it's a very simple procedure. Just go up to the top of the page on the right, and click on the Log In button. You need to choose a name to use (which can be a nickname or your choice, it need not be your real name) and an email address. Registering and logging in aids you in reading the bulletin board as well. If you are logged in, the board will show you which 'threads' have new replies which you have not read. You are always given the choice of posting anonymously, so even if you register and have an official 'name', you do not have to use it for your posts. But you do need it to get into the chat room

When I first found this site, one of the first things I did was go to the chatroom. I can't tell you how much comfort it gave me to talk to others who actually understood my fears, and could answer questions for me about Interferon. I spent many evenings there while on interferon, with Charlie and Barth and the ladies making me laugh so hard. I was so sad back then about the return of my melanoma that I was surprised I could laugh about such silly things, but it did me so much good to feel 'normal'

I hope we can do that for some of you.

Dian in spokane

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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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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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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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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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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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Rendergirl's picture
Replies 24
Last reply 4/15/2011 - 5:34pm

I'm new here, just diagnosed with at least Stage 2 Malignant Melano on my upper chest. Next week I go in for pre-surgical bloodwork and lymphoscintigraphy and the day after is extensive surgery and lymph node biopsy. The lymphoscintigraphy sounds scarier than the actual surgery to me, the surgeon looked me right in the eye and said it would hurt, and some people complained of burning. If anyone has had this, please can you tell me your experience?? Level 1-10 for pain? I know everyone is different, but I feel the more info I have, the better I'll handle it, and I'm terrified.

Thanks....

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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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archer's picture
Replies 11
Last reply 4/15/2011 - 12:18pm

I want to thank all of you that said, "run, don't walk to a specialist".  We did just that yesterday and what a world of difference compared to our first visit with an oncologist.  We even had someone on here provide her email address because she goes to the same doctor and her statements about this doctor were correct.  We left feeling good about our decision.

Tomorrow morning, my wife is scheduled for her PET scan, meeting with a surgeon and then the specialist.  Talk about making things happen! We are grateful to all of you for this advice as well as all the other advice you have graciously shared.  It has helped us get get a direction with all this mess.  Tomorrow will be 14 days from the diagnosis.  I can say that I actually slept 7 hours last night.  That is the first time in the two week period.  I know you guys will understand what I mean by that but hopefully that is the sign of good things to come.  

Now, our prayers, thoughts etc are directed toward a clear negative scan tomorrow.  That would be a gift.

Again, I can't thank all of you enough for your help.  Last week was disaster, a blur and I was a notch above a zombie (at least when alone) but this week is a tad better thanks to a lot of people such as yourself praying and sharing.  

I will keep in touch.

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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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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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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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