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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MikeWI's picture
Replies 8
Last reply 7/24/2011 - 12:04am

I am new to this site, having been diagnosed with melanoma on 5/25.  On my lower right leg, I always had a mole.  Being of irish descent and fair skined that was common.  Around November of last year this mole flaked off like dead skin.  Shortly afterwards it was replaced by a scab and that scab started to grow in size. 

I went to my doctor in May of this year and had the mole removed.  They examed it, and found it to contain melanoma. 

Shortly after that is a daze of tests I had a CT/PET scan, sentinel lobe surgery and a surgery on my leg for a deeper incision.

The PET scan showed the cancer had not yet Metastized, my lymph node was clean of cancer, and so was the tissue sample from the deeper incision.  Due to the size of the tumor(7mm thick) I am considered stage 2.

My next step may be a interferon treatment.  I have faith in my Doctors at the University of Wisconsin Hospital

I have read everything on this web site including the following quote "You have been given a Diagnosis not a Death sentenace"  Does anyone know any other strategies for dealing with this disease?

 

Thanks,

Mike 

Search and Destroy

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brownidgirl1's picture
Replies 4
Last reply 7/24/2011 - 1:32pm

Hello, I just signed up on this site today because I am having a slight complication from surgery to remove 2 lymph nodes from my left groin. I have read the stories shared on this site and my prayers go out to each and every one of you!! I have questions but am having difficulty getting answers or results from my doctor and wanted to see if anyone here had any simiar experiences or advice.

After the removal of the lymph nodes I did not have any drains put in. I have had to go to the surgeon twice now to have him drain the site with a syringe. The site keeps swelling and filling with fluid and there is nowhere for the fluid to go. On my last visit I believe he used a lightly larger needle to drain the fluid so it is draining itself a little at a time but it is still swollen. My fear is that I will end up with an infection or that I will end up in the doctor's office every few days to continue to have this drained.

Does anyone have any advice or suggestions? I would appreciate it greatly!! Again, my prayers go out to everyone who is facing this battle!

Thank you,

Kelly

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mombase's picture
Replies 15
Last reply 7/25/2011 - 7:01pm
Replies by: NYKaren, mombase, Jim M., lhaley, MaryD, Anonymous, Cooper, MichaelFL, jmmm

Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma.  I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative.  I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.

Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!

The first thing that is going to happen in a couple of weeks is  whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).

Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?

I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.

Any input would be so greatly appreciated!!

Sincerely

Cristy

Getter done!

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Kim K's picture
Replies 16
Last reply 7/28/2011 - 11:38pm

Had scans yesterday, all is clear.  Next check in 6 mos.  I don't know why my onc also wants me to see the surgical onc next time, nothing to cut on - lol.  Whatevers.... perhaps it is just to cheer the surgical onc since some of us will be the one's extending the survival tail of stage IV, and I happen to be one of them *fingers crossed along with everything else*

VATS - 2/10

High dose IL-2 - 23 bags 5-6/10

NED oficially 7/10

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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eaca's picture
Replies 41
Last reply 8/7/2013 - 4:39am

I just had a consultation with my medical oncologist today during which we discussed the Interferon decision.  The options for me are:  Wait and Watch; classic Interferon treatment; Pegylated Interferon; try to get on a trial at MD Anderson combining Peg-Interferon and peptide vaccine (gp100).  I've read up here on what others have had to say on Interferon or not, but there doesn't seem to be too much experience with the pegylated version or the vaccine.  I'm 'only' stage II, but relatively high risk because of the mitotic rate of my primary.  In the end I know this will come down to a very personal choice, but I thought I'd put it out there for any thoughts others might have.

After my relief over being clear after surgery, I'm now feeling confused and worried again.  Big choices to be made.  Thanks in advance for any input!

Elisa

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TracyLee's picture
Replies 22
Last reply 8/13/2012 - 3:28am

Hi Y'all, 

Saw Dr. Sharfman today. He does not feel I'm responding to Ipi, but will finish the 4th dose this Thursday.

I AM Braf +, since I have fluid in the lungs, that's the next step for me. 

It is so nice to not feel like death is NOT imminent and that their is hope. Dr. Sharfman is just the best, very straightforward but never gloom and doom.  Always kind and hopeful. 

Even had some necessary discussions with my husband during the drive, but not at all sad or creepy. Made me relax knowing that he is at least thinking about things that keep me awake. We had a nice day together, got some good news, and have a plan to move forward.

Praying that all on the board have a "good news" weekend, we will beat the beast. 

Special thanks to the posse for holding me up when I was so down earlier this week!

Hugs from Delaware!

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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BellaSusan's picture
Replies 10
Last reply 3/15/2012 - 5:43pm
Replies by: Anonymous, hope4cure1, BellaSusan

Comments regarding Dr. O'Day and the efficacy of The Angeles Clinic have caused me to reflect on what I know to be true.  I am a six year Melanoma Vet, four of which have been spent dealing with metastatic disease in the liver, spleen, lungs and brain.  Through it all, I've learned one thing.  While it is nice to work with a doc with great communication skills and bedside manner; it is far more important to work with docs who have very large toolboxes with as many treatment options as possible.  Since my life has depended on clinical trials, I must add one more necessary point.  Make sure the Melanoma specialist’s clinic has stringent Standard Operating Procedures to ensure that the pharmaceutical manufacturer's protocol is being followed. You don’t want to risk the FDA closing the clinic’s trial participation due to breach of protocol.
 
My experience with The Angeles Clinic might help you decide whether to seek treatment there. Three important observations I’ve made are:
 
1.  The Angeles Clinic has one of the largest Melanoma Treatment Toolboxes in the US.  Post Ipi and after my third hit with brain mets, I had to get on the first round of the expanded access trial, for the BRAF inhibitor, PLX 4032/RG7204/Vemu, pronto.  Dr. O'Day's younger associate, Dr. Omid Hamid, was conducting the Vemu trial. After working with Dr. Hamid over seven Vemu cycles, I can unequivocally state that Dr. O'Day has measures in place to ensure high professional standards are maintained at the clinic.  
 
PLEASE do not interpret from my comments that Dr. O'Day is stepping down.  As far as I know, he is only on an extended leave.  He has however had the foresight to invest in the professional resources necessary for temporary coverage as well as future growth.
 
2.  Dr. Hamid has a decade of Melanoma treatment experience that happens to be very patient care oriented. While he has his own unique set of skills and does not parrot Dr. O'Day, he also maintains and furthers the high standards Dr. O'Day set for the clinic.  This is the kind of doc who responds to your text so quickly that you wonder when exactly he sleeps.  Currently, Dr. Hamid has seven viable options from the latest R&D, should I relapse.
 
3.  Dr. Hamid has been dogged in his pursuit of clinical trials for The Angeles Clinic.  His youth and stamina are key because after clinic hours he researches the R&D landscape looking for the best options possible that match his patient profiles.  When he sits down with pharmaceutical trial directors, they know Dr. Hamid will deliver results that are mutually beneficial to the clinic's patient base as well as pharma.
 
So am I dedicated to being Dr. Hamid's patient for life?  Given what I have stated prior, the only feasible answer is "No".  I am, however, Dr. Hamid’s dedicated patient for as long as he responsibly provides me with the best options possible.  I hope my comments will help you in your due diligence.

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jim Breitfeller's picture
Replies 9
Last reply 10/2/2011 - 5:54pm
Replies by: LuckyMan51, Anonymous, jim Breitfeller, MariaH, LynnLuc, sharmon

I just got word that Combinatorial ...Yervoy + BRAF Therapy.. is coming

"t's being assembled. First patients treated sometime in the fall."

This is from a reliable source.

Jimmy B

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renakimu's picture
Replies 5
Last reply 7/22/2011 - 5:25pm

today we found out tha the nodules were there from the first ct scan and they are exactly the same as before.none can say that they are melanoma or not.is it posible with just a microscopic met at tha sln and without othel lumpnode positivi at the full axillary disection to have a met at lungs?the lung specialist told us that those could be there for years and to be asymptomatic for ever, they just need observation from time to time.the thing  that worrys me is that they are ground glass.....so much anxiety evere time with scans....its horrrible..

cant wat for answers!you are helping me so much!

blessings to everyone

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triciad's picture
Replies 15
Last reply 7/23/2011 - 8:37pm

Hi Everyone,

It's me again.  I just had surgery to remove an intransit from by buttock area.  This puts me now at 3C.  My oncologist wants me to do a little radiation to that area.  He says it's painless and hopefully will kill any cells left behind...on my behind...ha ha.  He also said it would not exclude me from any treatments in the future. 

I have an appointment next Wednesday with the radiologist, but I was hoping some of you could share some advice or experiences with localized radiation.  How many zap sessions are usually involved?

Thanks for all of your help!

Tricia

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cfw9186's picture
Replies 7
Last reply 7/30/2011 - 3:10pm

 

south

Posted a few seconds ago
Things have gotten pretty rough here lately:  had bad sinus infection since the 6th of July, FINAALLLLLLY got some antibiotics about the 13, took for 5 days still felt like crap, so week, could not eve  get out of bed since the 6th because of head aches, the after the antibiotics, still was so week , then saw spin wheels again called dr.b., had an MRI and found our more tumors, plus my blood showed low on hormones, thyroid, so he put me steroids for the swelling in my brain and thyroid  for my metabolism.     

.dr b doesn't  seemed very encouraged that my IPI is working although I am holding out for weeks 12-14.  I find it weird that this has all started after the 4 and final infusion.

He suggests a chemo in pill for my brain may be the next best step..........Have appointments with both Drs. tomorrow,,,,,,,,,,still trying to remain hopefully.

Hanging on the the edge of a mustard seed.  :)  Love to all  Kitty

Get a skin check at least once a year by a dermatologist and stay out of the sun.

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MaryBeth and Jeff's picture
Replies 5
Last reply 7/22/2011 - 2:00pm

My husband's oncologist feels he is a Yervoy non-responder. He received his final Yervoy treatment last week. (He tolerated the treatments very very well). Since his third treatment he has developed many many nodules (sub q's) - on his arms, under his arms, neck, legs and chest. Some are small - pea size, some marble size. A few are even blue...appearing as if it is in his veins....demonstrating what I believe is the vascular nature of Mel. Onc does not want to wait for his 12 week post IPI scan, so he will begin Thalidomide and Temodar next week. http://clinicaltrials.gov/ct2/show/NCT00072163  Onc. feels IL-2 is too dangerous for him because of the brain mets - 19 total - all but one have been treated with Gamma Knife Surgery. - 2 separate surgeries. (the remaining one is to be treated next week). Subsequent MRIs did show the brain lesions have either reduced in size or no change in size.  Onc feels treatment with IL-2 could cause brain Hemorrhage. It "seems" like everything went downhill after his 3rd Yervoy treatment. He now has unbearable pain in his right gluteal area which no pain med can provide relief. He did have an MRI today and if possible we agreed on radiation of the area.  He has recently lost strength in his fingers finding it difficult to button, zippen and type. (This most likely is due to the brain radiation - 10 day regiment of low dose whole brain radiation after 1st Gamma Knife Surgery). We will discuss this with both his radiologist and medical onc. next week. I am just so distraugt at how so much has changed since his diagnosis on March 8, 2011. How over 4 months ago this man both felt and appeared healthy.  Praying that he responds to the T & T . Praying that the nodules are a positive immune reponse as a result of the Yervoy. Praying that he can get some relief from the pain. Praying...

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Jan in OC's picture
Replies 8
Last reply 10/7/2011 - 10:11am

Hi everyone,

Just a quick update on hubby, cause my life is really crazy!!!  Haven't been on here for a couple months.  After Dirk was taken off of IPI (yervoy) in May,  he started on the E-7080 trial.  It's been two and a half cycles, yesterday, our UCLA oncologist pulled him from this trial, too many new tumors growing. This brings our time at UCLA to an end

Dirk has an appointment with Dr Papadopoulas at MD Anderson in Houston on August 9th.  He believes that this move will give him the best choice of treatment options. I am driving the family, leaving on Tuesday, July 26th.  So long, Southern California, hello Texas...Dirk says he'll be saying "ya'all" in no time!  

Working hard to ensure that the move goes smoothly, and all of "my stuff, his crap" gets there safe and in one piece.  After this, I need a vacation!!   Still trying to arrange transport for our other auto to TX and find us a permanent place to live there.  Luckily, MD Anderson staff have been very helpful in finding us short term lodging until we can find our way around.

I will have to change my sign in name, no more "Jan in OC".   lol

laughter is the best medicine

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arnie and sherry's picture
Replies 4
Last reply 7/21/2011 - 7:55pm
Replies by: arnie and sherry, Anonymous, jim Breitfeller

looking for melanoma doc in san antonio tx , would anyone know of one?

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bs010kbb's picture
Replies 2
Last reply 7/23/2011 - 4:46pm
Replies by: Carver, gabsound

I recall reading about someone that had a groin dissection in her right groin followed by an area in the thigh that tested positive. I have been trying to recreate where I found this but have not been successful - I have also tried narrowing the search fields but just can't recreate where I found her posting. Can anyone help? I would love to chat to find out more about her thigh. If I remember correctly, this fellow survivor did Interferon and has NED now for 9 years. Appreciate your help - thank you.

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