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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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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François's picture
Replies 2
Last reply 3/3/2013 - 10:23am
Replies by: POW, aldakota22

As I said in  my older post, picture of CT Scan  was showing shrinking of lungs nodule. In fact after seeing my onc this week he said that one lung nodule  has disappeared!! and the 2 others are smaller. Great News! The sad thing is that I have an other (which I didn't know) in the groin that is shrinking as well. The onc didn't look much worried about this last one as long as the Zel is working. I asked him why I was not informed of this before and he said sometimes radiologist don't mentioned everything...On the other hand, being long time moving between bed and sofa I gained some weight and a significant increase of cholesterol, uric acid and triglyceride in my blood test as know been detected. I am now taking 40mg at night of Cardil. This is a most common side effect of Zelboral. I will start walking everyday for an hour. Next visit is 19 march to discuss this HDL problem. Next scan will be in May. I'am very satisfied with this early results and keep on with 8 pills a days

François

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Chris123's picture
Replies 12
Last reply 6/23/2013 - 7:50pm

 Recently a tumor has been found on my husband’s Iliac (pelvis bone) for which the biopsy results determined to be Stage 4 Metastatic Melanoma.  For treatment, he was provided the following two options by two different oncologists:

Option A:  Start with Radiation Therapy to reduce the size of the tumor in conjunction with Yervoy Treatments.  In the event this plan is not effective, proceed with the Merck Anti PD – 1 Clinical Trial.

Option A was suggested to initially provide for a reduction in the size of the tumor, therefore, reducing the pain and the risk of bone, muscle and or nerve damage as well as the fact that Yervoy has been proven to be effective.

Option B:  Start with the BMS Anti PD – 1 Clinical Trial and reserve Yervoy Treatments in conjunction with Radiation Therapy as a back-up plan.

Option B was suggested because it is providing interesting results and there is always a possibility that the clinical trial may close for which Anti PD-1 would no longer be available.

Please, your advice, input and or prior experiences with Yervoy vs Anti PD -1 would be truly appreciated.

THANK YOU! 

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Chris123's picture
Replies 2
Last reply 7/22/2013 - 11:06pm
Replies by: POW, LynnLuc

 Recently a tumor has been found on my husband’s Iliac (pelvis bone) for which the biopsy results determined to be Stage 4 Metastatic Melanoma.  For treatment, he was provided the following two options by two different oncologists:

Option A:  Start with Radiation Therapy to reduce the size of the tumor in conjunction with Yervoy Treatments.  In the event this plan is not effective, proceed with the Merck Anti PD – 1 Clinical Trial.

Option A was suggested to initially provide for a reduction in the size of the tumor, therefore, reducing the pain and the risk of bone, muscle and or nerve damage as well as the fact that Yervoy has been proven to be effective.

Option B:  Start with the BMS Anti PD – 1 Clinical Trial and reserve Yervoy Treatments in conjunction with Radiation Therapy as a back-up plan.

Option B was suggested because it is providing interesting results and there is always a possibility that the clinical trial may close for which Anti PD-1 would no longer be available.

Please, your advice, input and or prior experiences with Yervoy vs Anti PD -1 would be truly appreciated.

THANK YOU! 

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Amanda's picture
Replies 2
Last reply 3/2/2013 - 10:38am
Replies by: Amanda, POW

My boyfriend Randy got his second infusion of the merk-3475 pd-1 drug at 10mg/kg with previous use of Yervoy at UCLA with Dr. Ribas monday, and also had a visit with his primary oncologist, Dr. T. wednesday who was very happy with him at this time.  Dr.T measured his palpable mets and said they were stabalized.  He also said that it was the best he has seen him since he's become his Dr. (when randy was discharged from the hospital after his bowel surgery, we switched from his previous oncologist to Dr. T who knows more about melanoma. Randy was in a very weak state, and had lost a lot of weight when we met with Dr. T for the first time.  Randys tumors were growing quite rapidly for the two months before he started pd-1, including a met under his jaw bone that is about an inch long (forgot to ask the measurements) that devolped to that size in two months.  That met was the fastest growing met he has had yet i believe. 

I had been trying to get randy into the Pd-1 trial at UCLA for a month or more, waiting for the slots to open for previous ipi use.  All the while Dr. T saying we should start Dacarbazine since his mets were growing (he's braf-).  I knew from this board, and other research that Anti-Pd1 was doing so well in patient trials, i had to get randy into one.  We kept telling the Dr. we were trying to get into this trial, and luckily enough got accepted to one at UCLA.  Dr. T said randy had a good nurse (me).  ha, made me feel good.  Sorry to go on, but so far his visible mets have stabalized, pretty much right after the first dose we noticed them stop growing.  He has gained some weight, appetite is up, energy is definately up since he started, i can really tell the difference.  Plus he says he feels 'great'.  so far only some mild joint and muscle pains. 

Does anyone know how long ipi stays in the body?  After 7 months could ipi still be in there, and be working with the pd-1?

!-Amanda-!
(g/f of patient Randy)

"Give thanks in all circumstances"

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