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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kpcollins31's picture
Replies 35
Last reply 4/29/2013 - 11:16am

Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sep 2012 to remove a single infected lymph node in my upper left arm... they took a few sentinal nodes as well and they were all clear. I am seeing a melanoma specialist (Dr. John Stewart at Wake Forest Baptist Health) who does not really believe in scans, but he did plan to do another PET scan at the 1 year mark.

So my question is, how do you know if you have a problem? I feel great - I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?   

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meeshka6059's picture
Replies 10
Last reply 3/12/2013 - 2:35pm
Replies by: susanr, meeshka6059, POW

After only a short time on Zel my father's tumors in his body grew. He is on a very low dose as he doesn't tolerate Z well. His last brain scan showed new tumors and we are meeting today with his neurological radiologist to discuss options, if any, today. (Dad is 82, diagnosed stage IV in October.) I expect to hear some talk about gamma knife today. Wondering about anyone's experience with this, effectiveness, side effects, etc. He is continuing on the Z for now until the brain mets are dealt with. Then they will do another body scan to see if it's working. Dad continues to be weak and tired, losing weight, and his mental capacity is dwindling. He has no pain or nausea. We are giving him medical marijuana tincure for seizures and that seems to be doing the trick. I continue to count every small blessing.

Thank you. I'm sending you all love and light. ~Michelle

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Christinalynn4's picture
Replies 5
Last reply 3/4/2013 - 12:33pm
Replies by: Christinalynn4, JC

I was diagnosed with Melanoma on Jan 28th 2013 I had a mole on the left lower leg that had been there my whole life.. It had not changed but i did cut it with a razor shaving. I was nervous to have it removed in dec so i waited another month..it did not hurt at all when I had the shave biopsy and could have prob cut it off my self..it came back melanoma ..long story shorter i had surgery feb 15th the surgeon thought i would need a skin graft w a wound vac but he was able to pull the skin and stitch it closed..I thought it was good i have stretchy skin. I had slab to the left groin also. 2lymph nodes were taken and thank god came back negative and w the wle all the margins were clean no cancer..I ended up with a seroma to the groin and increased pain then increased pain to lower leg w redness and drainage. The groin has eased up and I opted to let the seroma hopefully dissolve on its own. Im really concerned about the lower incision. I started Keflex thurs but called the dr sat because the wound looked worse and started taking Bactrim twice a day. The dr does not seem concerned it is a five inch incision and they say there is a chance it will open! I have been out of work almost three weeks now and am a little terrified to go back thurs if it opens i will prob need a wound vac and another month off of work.. DOES ANYONE OUT THERE HAVE ANY ADVICE?? I have been wrapping the leg with four ace wraps as recommended by the dr from the toes to the groin and taking it off at night. 17days since surgery! The most pain I have is in the thigh....I don't know if I tore the muscle..I ve tried creams Lidoderm patch and ice nothing seems to be working. If anyone can help i would really appreciate it,

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I was diagnosed with Melanoma on Jan 28th 2013 I had a mole on the left lower leg that had been there my whole life.. It had not changed but i did cut it with a razor shaving. I was nervous to have it removed in dec so i waited another month..it did not hurt at all when I had the shave biopsy and could have prob cut it off my self..it came back melanoma ..long story shorter i had surgery feb 15th the surgeon thought i would need a skin graft w a wound vac but he was able to pull the skin and stitch it closed..I thought it was good i have stretchy skin. I had slab to the left groin also. 2lymph nodes were taken and thank god came back negative and w the wle all the margins were clean no cancer..I ended up with a seroma to the groin and increased pain then increased pain to lower leg w redness and drainage. The groin has eased up and I opted to let the seroma hopefully dissolve on its own. Im really concerned about the lower incision. I started Keflex thurs but called the dr sat because the wound looked worse and started taking Bactrim twice a day. The dr does not seem concerned it is a five inch incision and they say there is a chance it will open! I have been out of work almost three weeks now and am a little terrified to go back thurs if it opens i will prob need a wound vac and another month off of work.. DOES ANYONE OUT THERE HAVE ANY ADVICE?? I have been wrapping the leg with four ace wraps as recommended by the dr from the toes to the groin and taking it off at night. 17days since surgery! The most pain I have is in the thigh....I don't know if I tore the muscle..I ve tried creams Lidoderm patch and ice nothing seems to be working. If anyone can help i would really appreciate it,

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Colleen66's picture
Replies 5
Last reply 3/7/2013 - 9:43pm

I have lymphedema in my left leg.  I do the self massage and wear a stocking during the day.  Two things I have learned in the last 3 months.  I can only sleep on my right side or back, this leaves the left open to drain during the night.  This was hard for me cuz I always slept on my left side so I piled firm pillows at my back so I wouldn't roll over in my sleep.  Second thing I learned is don't buy a drugstore stocking.  It needs to fit correctly and have the right compression, I use a 30. 

I missed my opportunity to get to the specialist in a timely manner because of my interferon treatments.   I'm probably not alone in that category but I did learn the message technique from a YouTube video and figured the rest out as I went.

Anyone else have any tips?

Colleen 

Live!

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eric w's picture
Replies 2
Last reply 3/4/2013 - 8:58am
Replies by: eric w, POW

Hi all,

My wife had melanoma removed from her arm 2 years ago. It was ulcerated. It was removed with a node ...clean margins and node.. Done at UCLA.. And we have been going every 3 months for follow up..including pet/ct scans... Multple millimeter nodules were noted in an April 2012 pet scan.. Told to watch them..August 2012 ct should nodules stable.. February ct showed 5 of the nodules had grown from April.. Did a needle biopsy of a nodule a couple weeks ago and found to be melanoma... So we are going this Friday to meet with our onc.. The following week we are going to MD Anderson in Houston to meet with Dr. Kim for a second opinion on treatments... Then go from there.. We are still waiting for the mutation test results... My question on this would a molecular report be valuable in the beginning part of treatment... And for that matter for the whole process.. Trying to get all the tools I can to help my beautiful wife through this. Thanks

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audgator's picture
Replies 2
Last reply 3/4/2013 - 9:44pm
Replies by: Bubbles

Bubbles et al:  3 months ago I posted about my itching being worse.  Here I am 2 days from my next quarterly treatment and I am worse again.  I'm always somewhat itchy but it seems I get worse just before the next infusion. Interesting.     Dan

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Richard_K's picture
Replies 11
Last reply 3/8/2013 - 10:07am

 

It was three years ago today that I took my first dose of Zelboraf.  I passed my exam and scans last week (bilirubin still a concern) and I’m set to go for another six weeks. 

Dick

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I am on scare #6 of thinking my cancer is back.  I had surgery two years ago to have lymph nodes removed from two areas and they came back clean.  My onc said he diagnosed me with granulomar disease two years ago.  Scans came back with not good changes this year.  My onc is leaning towards active sarcoid.  I was never tested for sarcoid, was just told that I had it.  I did have a blood drawn on Friday to be tested for it. 

Who has heard about these two things?  what is the possible treatment, and how does it affect melanoma?

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Hello - my name is Bret and I'm a 42 year old father in Minnesota who has been battling Stage 4 melanoma for four years (started in leg, went to groin, then pelvis three times).  After going a full year without a tumor, I got scan results Thursday showing two new tumors in my pelvis.  I've had 8 surgeries, Interferon, chemo, ipi, oncovex, and radiation.  Running low on options now.  B-RAF negative and C-KIT negative.

Doctor is recommending I get into either a PD-1 study or a TIL study. The PD-1 study using MK-3475 is available at Mayo Clinic and I think I can get in.  I have an appointment tomorrow to sign consent and ensure that I qualify.

My questions - first, what has been your experience with PD-1 studies?  Second, we know very little about TIL and would appreciate any advice or input.  Finally, I have never tried IL-2, is that a good option or am I better off with a clinical study?  Also, does anyone know anything about the sequencing of these options?  Could I get IL-2 before or after one of these trials?

Thanks in advance for any advice.

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rharby's picture
Replies 10
Last reply 3/8/2014 - 5:14pm

So, on Feburary 14th I went in to a have a minor Hemorrhoid removed... While the surgeon was doing that she noticed something funny next to it and took everything. The pathology came back a week later on Feburary 20th as confirmed for Anal Melanoma. Needless to say, my Fiance and I went online to research the topic, which didn't turn up anything recent or possitive so we stopped looking online. We met with my PCP, who gave a pretty dim outlook, and we scheduled a PET scan for a few days later. In the meantime we went back and talked to the Surgeon who did the procedure, and her immediate recommendation was that we do a Stigmoid Ostomy to make sure we get everything, this was prior to the PET scan, so we asked, well what if the PET scan comes out clean, she still recommended the Ostomy as the path, followed by Chemo.

The following Monday I had the PET scan, and it came back clean, nothing even in anal canal... Talked to PCP about possibility of mis-diagnosis, and he confirmed with us that the Pathology was confirmed by an 8 patholist commmittee and it wasn't a mistake. Next we went and talked with an Oncologist at Wilmot Cancer Center in Rochester, his recommendation was for us to do whatever the surgeons wanted, then once we decided on what depth of surgery, he would recommend followup chemo.

I'm working on scheduling a meeting with the team at Dana Farber, as they seem to have far more experience with this diagnosis, and another local surgeon next week. Seems to me that an Ostomy is the extreme approach, as there isn't any guarentee that any micro cells haven't already spread to other parts of my body... But if I can find evidence that an Ostomoy improves my long term survival then I'm all for it, but it seems at least none of the Doctors want to push us either way.

Add the dilema, as I'm sure every indivdual has their own social and family issues.. I'm only 40 years old, and I have 3 children who are aged 7, 9 and 11, who lost their Mother 1.5 years ago in a car accident. I can't fatham the thought of telling them anything bad could happen to me, they just aren't ready to hear such information. So my goal is to do whatever necessary to fight through this diagnosis and keep this disease at bay. Looking for any advise on course of actions.. Thanks a ton.

 

Rick

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sharmon's picture
Replies 9
Last reply 3/8/2013 - 11:04pm

Hi,  a lot has happened in the last month.  First he failed the anti pd 1 trial.  The happened end of January.  Pain was uncontrollable due to crushed vertebra and bone mets. Surgery, pain pump followed by radiation is behind him.  Last week we flew to MD Anderson. This is where it gets confusing.  Brent is C-Kit negative. but  they want him to try a trial which is ippi and gleevec.  His original melanoma was under his toenail.

I questioned the fact that he was a Mek responder and Braf negative. I was told he was on a few of the people who were braf negative and a responder to MEk.  DR. agreed that is a good point but insurance will not pay for braf drug.  Mek is downstream from Braf. 

Brents done very well on radiation.  He was able to fly to Houston and back without much trouble.  His blood work is good considering he has had two weeks of radiation recently.

Dr. Weber doesn't want to see him anymore since he failed the anti pd 1 trial.  Says there is nothing at moffit for him.

Do I need a new local oncoligist to help me?

We have been to Karmanos in Michagan ,  Sarah Cannon in Nashville. and OHIO state.  Should I call them?

Md Anderson will put him on the IPPi Trial with Gleevac but WHY if he not C kit?

I don't write as well as some and am trying to make my point quickly.  IT is I need input and help in this maze.  I am so confused. 

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I hope i'm not stepping on toes posting this here but i know there are quite a lot of people from Australia that visit here. We have organised March's in different locations on March 24, to remember those that have passed, Survivors, families and friends unite to increase awareness and raise funds for research.  register and more info melanomamarch.com.au

best wishes

James

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/5/2013 - 11:34am

My aunt just received a Stage 4 Melanoma diagnosis after having a biopsy at the dermatologist. She had a shave biopsy that was 4.1mm all Melanoma. The mitotic index was 8. Does anyone know what the mitotic index of 8 means? We understand that is the rate at which the cells are dividing, but what is bad and what is good?

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http://www.bbc.co.uk/news/health-21635697#site-nav

 

1 March 2013 Last updated at 21:40 ET

 

Skin cancer 'able to fight off body's immune system'

 
 

A deadly form of skin cancer is able to fend off the body's immune system, UK researchers have found.

Analysis of tumour and blood samples shows that melanoma knocks out the body's best immune defence.

A potential test could work out which patients are likely to respond to treatment, the Journal of Clinical Investigation reports.

Cancer Research UK said the body's response was a "complex puzzle".

Previous work from the team at King's College London showed that while patients with melanoma produced antibodies that could attack tumour cells, the immune system often seemed powerless to stop the cancer progressing.

But in the latest research they discovered that the subtype of antibody attracted by the melanoma cells was the most ineffective at mounting the right sort of response.

In samples from 80 melanoma patients they say that the conditions created by the tumour attract IgG4 antibodies, which mount the weakest response and in turn interfere with any "strong" IgG1 antibodies that might be present.

"This work is still at an early stage, but it's a step towards developing more effective treatments for skin cancer”

Dr Kat Arney Cancer Research UK

By mimicking the conditions created by melanomas, they showed that in the presence of tumour cells, the immune system sent out IgG4 antibodies, but when faced with healthy cells it functioned as expected with IgG1 circulating.

They also confirmed that IgG4 was ineffective in launching an immune attack against cancer cells.

Potential test

In additional tests in 33 patients, they found that those with higher levels of the weak antibody IgG4 had a less favourable prognosis compared with those with levels nearer to normal.

Study author Dr Sophie Karagiannis said: "This work bears important implications for future therapies since not only are IgG4 antibodies ineffective in activating immune cells to kill tumours but they also work by blocking antibodies from killing tumour cells."

She said not only was IgG4 stopping the patient's more powerful antibodies from eradicating cancer, but it could also explain why some treatments based on boosting the immune response may be less effective in some patients.

Co-author Prof Frank Nestle said more work was needed on developing IgG4 as a potential test to improve patient care by helping to identify patients most likely to respond to treatments.

"This study can also inform the rational design of novel strategies to counteract IgG4 actions," he added.

Dr Kat Arney, science communications manager at Cancer Research UK, said: "There's a lot we don't yet understand about how our immune system recognises and responds to cancer, so we're pleased to have supported this new research that's helping to solve such a complex puzzle.

"This work is still at an early stage, but it's a step towards developing more effective treatments for skin cancer and potentially other types of cancer in the future."

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