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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EricNJill's picture
Replies 11
Last reply 2/1/2011 - 6:50am

We are considering this trial for my husband Eric.  I was wondering what your experiences are with this drug.  Thank you!

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deirgey's picture
Replies 5
Last reply 2/1/2011 - 12:18am
Replies by: deirgey, Anonymous, LynnLuc, skysar, lhaley

Just wondering if anybody knows what MDA tests for with the pathology slides you send them for a second opinion?  My dad is stage IV and didn't have to send pathology slides to the other 2nd opinion he got at the Angeles Clinic.  Thanks in advance :)

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dian in spokane's picture
Replies 6
Last reply 1/31/2011 - 11:33pm

I don't know if Carole will make her way to the board today, but I know that there are many who remember her, since she was such a big help to so many people on this board for so long. Love and Light Carole!

Today she celebrates 10 yrs NED after surgical removal of Brain Mets.

I know that whe followed a holistic approach after her surgery, and has not had a recurrence of her melanoma in all of these years.

While she's not here posting, I also know there there are currently others on this board who are fighting brain mets, so maybe her story will encourage them

I know that she's always been an inspiraton to me!

dian

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Amy Busby's picture
Replies 12
Last reply 1/31/2011 - 11:31pm

Hi all!   Sorry I have not been around much lately.  I see so many (relatively) new people and hate that I haven't been able to share my vast storehouse of melanoma info, lol.  I have been around the block more than a few times.  Now I have failed ipi too.  I decided to first take steps to ease my HIGH pain level and strengthen my hip / femur on the left.  I had good success with the radiation on the right side, so that's what we're doing on the left now.  Lots of fatigue, so not online much lately.

Had a slot lined up for E7080 but who knows if it will be gone in 38 days?  I'd bet that it is.  So I'll be beating the bushes once again hoping a viable treatment option shakes out once I'm done w/ my 10 day course of radiation and passed a 28 day washout.  But first my priority is NOT breaking my hip.  So lots of sitting & people pushing me back & forth to the restroom in my wheelchair.  grrrrrrrr

Anyone with contact info on trial options send them to me at amybusby@sbcglobal.net.  I'm looking for targeted therapy but often brushed off b/c of prior BRAF study.experience & leptomeningial mets.  But my brain is stable for awhile.

Love and Encouragement to you all,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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LynnLuc's picture
Replies 2
Last reply 1/31/2011 - 11:10pm
Replies by: Lori C, Amy Busby

Yesterday while visiting my friend in the hospital as she had her surgery to remove a grapefruit mass of melanoma from her intestines...the nurse said somethings about care,insurance etc etc..

She said there have been  many times that during chemotherapy  insurance companies would drop their clients because of the expense of chemo so then they would have to stop treatment and wait until they get approved by Medicare or Medicaid...that really shocked me...the she also said a lot of insurances only allow you so many days as inpatient given a specific  treatment even if the patient hasn't recovered enough...she came right out and said that if the pateint is on Medicare and Medicaid that wouldn't happen to them...that totally was the opposite of what I thought...I thought Medicaid and Medicare would cover the least....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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bball's picture
Replies 2
Last reply 1/31/2011 - 9:42am
Replies by: bball, triciad

I have ruled out 1yr interferon treatment. However,when i look at some of the trials like Rusciani it seems worthwhile to at least try it for 30 days to extend chances of DFS.(or has this study been shown not to be valid). Any experiances or opinions would be greatly appreciated.

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MaryMary73's picture
Replies 2
Last reply 1/30/2011 - 8:52pm

I found a fantastic article online which features research from dermatologist Dr. Marcia Driscoll, clinical associate professor of dermatology at the University of Maryland School of Medicine in Baltimore.

http://www.sciencedaily.com/releases/2009/05/090504210204.htm

The only real wisdom is knowing you know nothing -Socrates

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/30/2011 - 5:40pm

Hi,

I'am 31 years old, living in France. Last september I was diagnosed a melanoma on my back, 4,01 mm, not ulcerated, 2 mitosis. So from one day to another, I started learning a lexicography I have never heard before.

My PET Scan was clear, as well as the ecography. Then I had a surgery for the Sentinal node biopsy. And it came negative, so it's clear as well.

The dermatologist told me last week that I am in Stage II B (just for 0,1 mm I guess, otherwise it would be stage II A). And she suggest me to take Interferon three times a week for 18 months. Another dermatologist I called, told me that the use of interferon is controversial, and that I should think it well because of the side-effects.

I know that is a personal decision and that is quite difficult to generalize the side effects. As an amateur in melanoma, I will appreciate if you guys, can help me to make myself clear. Thanks,

Gabriel

 

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alicia's picture
Replies 15
Last reply 1/30/2011 - 5:35pm

Hello everyone I just got back from Vandy a few days ago and recieved pretty good news from my path results.  There was no evidence of melanoma in my lymph nodes however the melanoma tumor was thicker than previously thought.  there was 2.3mm of residual melanoma on the skin they excised but got clear margins.  I guess one the questions i forgot to ask my dr was do they add the 1mm of melanoma they removed with the biopsy to the 2.3mm to get the total depth or how does that work.  He said this was a thick melanoma and puts me at a stage 2 for this primary.  This is my third primary melanoma BTW:(  The first mel I had 4 yrs ago was 2.3mm at least and spread to one of my lymph nodes.  and then in July of this year I had a thin 0.59mm melanoma clarks level II only treated with wide excision.  I do have another question about my SNB this time.  The first surgeon I was referred to said that since I have already had surgery to my left groin to remove some lymph nodes (due to first mel being on left hip and +SNB Lt groin) that lymphatics had been disrupted and a CLND needed to be done because it would be impossible to find the SN by doing the lymphoschintigraphy or blue dye test.  Well I then get referred to Vandy because my surgeon feels it would be best I see a mel specialist to do my surgery since i'm only 28 yrs old and this is my 3rd primary and the surgery could be complicated since scar tissue in left groin etc etc.  Well the mel surgeon at Vandy says no we will do SNB only and not CLND so day of surgery we do the injection and the nodes light up in both groins so he removed 3 in left groin and 1 in right groin.  While i am so excited that all came back clear of melanoma I still worry at times if he could have missed the true SN as the first surgeon said there is no way of finding it by doing the dye test cause lymphatics have been disrupted.  Sorry to ramble when most of you are dealing with way more serious issues than me.  I just dont know who to talk to about these details and you all have experienced this first hand and truly understand what this feels like.  I go see my oncologist here at home in a couple of weeks.  The mel surgeon said he wouldn't recommend interferon since i've already been there done that but he thought a PET scan needs to be done since I need to be followed as a stage 3 patient and this melanoma was pretty thick.  He also mentioned doing US surveilence of nodes and do FNA if there are any suspicious areas.  Thank you again for your time.

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Nebr78's picture
Replies 4
Last reply 1/30/2011 - 4:31pm

I have been reading a lot about Oncovex.  I have heart disease so cannot take strong chemos.  Does anyone know it Oncovex has side effects.  I am currently having radiation on a lump on my face and chest.  I have stage 4 melanoma.  I am inquiring about a clinical trial in Omaha, ne.  I need something quick as my Cardiologist thinks i have more blockage on front of heart.  That would mean another heart cather and stent(s).  Maybe I am too old to get into clinical trials. I am a male 79 yrs. old.

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triciad's picture
Replies 8
Last reply 1/30/2011 - 4:11pm

Hi All,

I'd love to hear what you all have to say regarding scans. 

I was diagnosed July 09 at 3B.  Surgery and a year of Interferon have been my treatments.   I am scheduled to go for CT of abdomen, chest, and pelvis next week.  My concern is what about a brain MRI?  I guess with all the talk here about brain mets, I'm a little nervous.  I asked my oncologist about the brain MRI, and he said it was not necessary.  Supposedly, all my blood work was good.

My last scans were last February, so it's a full year of not knowing.  What do you all think?  Should I be concerned?

Thanks so much for your advice.  You've been such a great source of support, strength, and knowledge throughout my journey.  It's sad to say, but I trust you all more than my doctor! 

Thanks for any words of wisdom you can offer.

Tricia 

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Gwen in Maine's picture
Replies 21
Last reply 1/30/2011 - 2:43pm

Hello Everyone,

I've been reading the forums for a few months now and am grateful for such a supportive place to post.

Here is my history. I've been dealing with Melanoma for almost 2 years now - diagnosed 2/09, at 47, with melanoma in lymph node on my neck, unknown primary. I had false positive spots, via PET scan, all over my body so they took time and biopsies to make sure it was only in my neck. Surgery in April to remove the lump and surrounding lymph nodes, diagnosed IIIc. A month later I had five sessions of high dose radiation to the area and a month after that, started 1 month of HD interferon followed by 11 months of low dose interferon. I got through it ok, but it was not easy. Ten months into the LD interferon, I noticed 2 small nodules at the midline front of my neck. They thought it might be scar tissue but took a biopsy and it tested postive for melanoma. I had surgery in August, 2010 and the margins were clear. Before all this happened I had never had surgery in my life and have always been generally healthy and active.

There aren't many treatment options for me at this point. So far I've opted for watch and wait with scans every 3-4 months. I've also focused on eating a macrobiotic diet, which makes me feel like I'm doing something. Last week I found out my latest PET-scan was clear, thank goodness. My doctor talked more with me about doing the Leukine treatment. From what I've heard, the data isn't solid about whether it's helpful or not. Basically if I did it, it would be for the sake of trying anything that could possibly help it from coming back and spreading. Right now I'm feeling great though, and am hesitant to start something  that might make me feel as bad as I did on interferon, for only a little hope it could help. On the other hand, I've read that the side effects of Leukine are not as bad.

I'd appreciate hearing from those of you who have tried Leukine and what you thought about it.

Thanks so much,

Gwen in Maine

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lhaley's picture
Replies 6
Last reply 1/30/2011 - 10:00am

I go to a melanoma specialist and a local oncologist. Last visit to Charlotte the PET/CT scan showed a slow growing nodule on the lung. I go in 2 weeks to have another PET/CT.  Meanwhile I went yesterday to my local oncologist. She did blood work and just called.  My liver functions are off.  The ALT is 178. In Nov. it was 40.  The Alkaline Phos. was 140 - she said that was high also, did not catch what it was in Nov. 

I am on Zocor 80mg for cholesteral, she said that could be why, but then why wouldn't it have been high in Nov!!!   I've actually been off for 2 weeks because I also have mastitis and have been on 2 different courses of antibiotics. Erithromycin 1600 mg a day, and then the z-pack. Zocor and Erithromycin do not work well together. No one warned me at first so for about 6 days I was on them together.  I'm allergic to most antibiotics so that was why those were chosen - they didn't work and am being referred to an infectious disease Dr.    Could the antibiotics cause the high numbers??

She is having me come back next week to redo the bloodwork. She never calls, always has her nurse call so I know this is not normal.

Can anyone give me some insight?  I had been able to keep my anxiety in check for the next PET but it's off the charts right now!

Linda

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Jaime.30's picture
Replies 2
Last reply 1/30/2011 - 1:03am
Replies by: Jaime.30, lhaley

Hi!  I just wanted to post a little update and say thank you for all of you who offered a kind word during my freak out posts last month.  My husband Eston is doing great.  After a few CT scans on his neck and a follow up MRI on his brain there is no sign of Melanoma still.  It has been a busy stressful almost 2 years but we NEVER take forgranted how lucky and blessed we are that he is NED and that the crainotomy found no melanoma.  He is back to work and we are trying as hard as we can to just live life.  Sadly Eston's father passed away from a heart attack a month ago but we were very touched that his mother decided to list MRF in the obituary to send donations to.  Eston's dad would want a cure for his son and for others fighting this cancer.  We know of at least 3 donations made and this means the world to us!!  Every little bit helps.

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Jan in OC's picture
Replies 13
Last reply 1/29/2011 - 12:35pm

During the scans to qualify for the E-7080 trial, the Dr discovered several brain mets. Husband has been on no treatment since failing BRAF on 12/20/10 in preparation for another trial.  Cancer has been growing like crazy!  We are both a little upset by this news.

We go in this afternoon to discuss other options with him, but I don't know anything about the treatment options once mel is in the brain.  Any help or advice would be appreciated.

Jan, wife to Dirk, stage 4, WLE, 1 mo HD Interferon, BRAF 11months

laughter is the best medicine

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