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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Rocklove's picture
Replies 8
Last reply 12/5/2010 - 2:28pm

Wishing I had some good news to post. But thought I was walking into Moffit Wednesday to start the PD-1 trial. Got there... Oh no.. you need to see the doctor before we can start.

Doctor walks in, bad news.........we can't put you on the PD-1 with Vaccine trial because your HLA is A*03. I took it in stride after picking my feelings off the floor. OK Doc what do we do. He said compassionate IPI is our choice. He would rather do the Adoptive Cell Therapy but it takes at least 6 weeks and the way the tumors were growing (they have tripled in numbers in the liver) he did not want to waste the time and he would rather get me started on the IPI. The IPI should start within 2 weeks.

I went along with his recommendation .... (please keep in mind I was in shock and not responsible for my actions after news like that.)

(For those that don't know my history with Stage IV diagnosed last Dec is Docetaxol-YM-155 for 2 rounds (6 weeks) then failed, 6 rounds of Bio Chemo and 2 months of maintenance (IL2) then failed. No need to go into the stage 3 surgeries and limb infusions procedures in the groin and leg and radiation for the 2 years prior starting Dec 2007 @ Moffit in Tampa).

After a day of being kicked to the curb an MPIP friend said "we have a lot of work to do. We need to find out why... they told you 1 month ago you were HLA 2a positive........why now A*03 what happened?"

She said "Call the PD-1 Trial administrator and find out if you have to be HLA 2a positive to be in the trial and if it yes, ask for an exception."

She said

"Email the doctor and ask why I would only get 3mg of IPI on the compassionate basis and most of the trials that went on were 10mg?"

" Ask him what is plan b? We need to have that plan in place no time to waste if IPI does not work."

"Ask him since IPI takes 3 months before you scan... can there something to find out the progress in the middle of the 3 month time slot?"

I did email him, not all questions answered but she got me to get him thinking harder I hope.

If any of you have any suggestions or questions to help out in my quest for the silver bullet, I would appreciate it.

I have personally met several people from the MPIP board and most have been extremely supportive. They will at least help extend my life.. and hopefully they help save it.

By the way, I'm back in the game in fighting mode again.

Rocky (Stage IV Liver Mets)

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alicia's picture
Replies 7
Last reply 12/5/2010 - 12:20pm
Replies by: Amy Busby, Lori C, JJO, Carmon in NM, Jydnew, jag, Anonymous

I've recently been experiencing headaches that cuase extreme nausea. Sounds like migraines to me but I've never had this problem and I'm wondering if this is something I should call my dr about. I'm not due to see her until April 2011. I'm just concerned about brain mets And i haven't had an MRI of the brain since I was initially diagnosed in sep 2006. Did any of you with brain mets have symptoms before they were found. My once only does ct scans of my chest once a year and I worry something could be missed elsewhere in my body. Thanks any input would be helpful.

Alicia B age 28 with 2 kids
Stage 3 melanoma 2006
2nd primary stage1 Mel 2010

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Jan in OC's picture
Replies 2
Last reply 12/4/2010 - 11:22pm
Replies by: LynnLuc, Anonymous

Well, We just got back from seeing my husband's dermatologist at UCLA (Dr Roger Lo).  We have noticed in the last month that the spots on the chest have become blacker and the Dr confirmed that they have "become more pronounced".  Could just be that the spots are making more pigment...or...the BRAF has met with resistance.  We have a CT scheduled for 12/17 and visit with Onc on 12/20.  Trying not to worry, but we would like to start researching other options.  Dr said we could maybe do trial with MEK/BRAF combo????  Just looking for input.  Other then IPI, what other options should we consider?

Jan (wife to Dirk, stage IV,  liver/lung mets, on BRAF since Feb)

laughter is the best medicine

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Anonymous's picture
Replies 3
Last reply 12/4/2010 - 10:14pm
Replies by: LynnLuc, JohnHen

Looking to see if anyone would know?

If there are trials available how do you find out?

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Mfarkas's picture
Replies 3
Last reply 12/4/2010 - 8:43pm
Replies by: nicoli, MichaelFL, Lori C

Hi!  I was diagnosed stage 2c in June 2008, since then have completed one year interferon and had my second baby.  I really have no complaints.  Just went to the oncologist for my 2.5 year check up, had a clean chest x-ray and he told me my labs were great and that I would see him in April or May, "When the snow melts"  I live in Wisconsin!!

So - my question is my LDH levels have been changing.  They were in the 150's all through out treatment, then this past June it was 379 and this past week it was 514.  The normal range goes to 618, somewhere around there.  Do I need to be worried?  Do I trust that he is not concerned and would like to wait until spring to do a scan due to my age - 31.  I would like to continue to move on with my life and watch my two little girls grow and have a happy life along with them - but this has caused me some concern.

Any ideas?  Is there a way I can lower the lab value?  Is it really indicitive of anything other than a "non-specific tumor marker"??

Thanks!

Michele

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Hi everyone,

I feel great so far. Had my first IPI infusion yesterday. I saw my oncology surgeon before seeing my melanoma oncologist because of the two open wounds and a possible infection.I pointed out my 5 new melanomas nodules. He agreed that they were melanoma, as they look like how mine usually present. He brought up the drastic option of an above the knee leg amputation. There is no known melanoma anywhere else in my body. We could get rid of the melanoma and the unhealed wounds in my leg by amputating. I told him, as I bawled, that I wasnt afraid of having my leg amputated and having to have a prosthesis. I am afraid of doing that AND melanoma rears its ugly head again, further up on my thigh, or elsewhere in my body (an organ, etc). OR I worry about my "stump" not healing, just like the two wider excisions have not healed. He said he heard what I was saying and agreed there were no guarantees on either concern. He just wanted to bring it up as an option that I SHOULD think about and consider. Oh and I had another celluilitis infection, which I had suspected and was the reason for my visit. I cried so much during the visit but finally pulled myself together as I had my oncology visit and then my IPI treatment. I managed to get, with my mom's support from 4L to 3K ,but felt like I couldnt get enough air. I knew I was on the verge of a panic attack. I made it to the oncology office and I knew my surgeon was calling my oncologist. As soon as he saw me as he was walking by he said "I'll get you into a room as soon as possble".The nurse came out right away and took me and my mom to a room. He came in right away and was GREAT! I said I was afraid I couldnt do the IPI because of the leg infection...he said dont worry, this is what we are going to do....we are going to call your leg issues a chronic indolent infectious process and put you on augmentin twice a day for two weeks then once a day for months. Then we can get you into the trial. I told him I needed som ativan as I was getting panicky and couldnt breathe well. He knew I was upset and he said as soon as we get you into the clinic rooms for IPI I will get you some ativan. That helped me calm down. He then spent the next 45 mintues talking to me and my mom about where leg amputation fit in as far as my clinical case of melanoma. He said he wanted to give IPI a chance and then try IL-2 and/or other chemos before we made that decision. He has had some patients who opted for amputation of their leg. He understood how bad I felt and how scared I am. He did his physical exam, agreed with all the nodules I found being melanoma and he found a spot behind my leg that I hadnt seen. We then went to the clinic rooms and the first thing they did was give me IV Ativan, then an augmentin pill to get started and then eventually the IPI arrived and that part went really well. The staff was great, everyone was perfect and so caring. I slept and dozed and mom said I asked the same questions twice a couple of times. Haha, that darn ativan. I got a prescription for lorazepam as I know there are just some days I need it. I know some people here have opted for leg amputation....can you write to me and please tell me more about your specific situations??

Thanks so much for reading all of this (if you indeed made it this far!)

Vermont_Donna

stage 3a

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/4/2010 - 2:14pm
Replies by: Charlie S, Jamietk

Hello.

I have recently been approved for MediCare but I do not understand what MediCare is.

I was told that I am now recieving MediCare benefits as well as the MediCaid benefts I was previously on.

What is the difference in the two?

Any help or personal experinces will help.

Thank You.

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Sherron's picture
Replies 41
Last reply 12/4/2010 - 9:57am

He was the most wonderful loving man, Christian, father, husband, best friend, and soul mate a wife could ever want or wish for.  December 4th would have our been our 43rd anniversary. We went to Hospice yesterday afternoon...and by 1:10 am.  the angels took him to heaven, no more pain for him.  Something (God) woke me up 10 minutes before he passed.  What a blessing.  I will miss him so much, my heart is broken...but he is pain free, and Melanoma has him no more!! 

Take Care,

Sherron, wife to Jim FOREVER!

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glewis923's picture
Replies 7
Last reply 12/3/2010 - 8:31pm

Hey ALL-  Got 6wk. CT scan and all my lung nodules (nice word for TUMORS!!!) have NOT increased in size. ie: they are relatively stable compared to last scan where they had tripled in size.  I hesitate to "crow" too loud about any shreads of semi-good news, but I'm so grateful that, at least temporarily, my lung tumor growth has "stabilized" and there has been no further spread to other organs as of yet.  FYI:  I'm on Taxol/Carboplatin/Avistan.   I think of ALL of you quite often although I don't always "share" that much......I pray for ALL- especially those younger than I (48).   Just thought I'd finally post something semi-positive about myself; instead of lousy advice or tiring questions.

 

Love to ALL-  Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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swissie's picture
Replies 3
Last reply 12/3/2010 - 3:43am

I haven't really posted on this new forum, but now I need some help.

I was diagnosed with melanoma in September 2008 (1.4 mm), with a "negative" SNB. I found a macrometatastase in June 2009. Of the 12 nodes, 3 had cancer, one of which was outside of the node.

In September 2009 I started a double blind trial with ipilimumab (10 mg/kg), after my 4th infusion I had a colitis and knew I am in the ipi arm of the trial.
I had my 8th round of ipi two weeks ago!

Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; min grade 3), a rash  (a week BEFORE my 8th! infusion; min grade 3).
My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

At the moment, my biggest problem is exhaustion.

My first question is if there are others like me out there who had 8 rounds of ipi or more? How are you feeling? Any new side effects?

My second question is if I should quit the trial. It seems to be taking it's toll. Being exhausted all the time sucks big time. I was very tired from the beginning, but it's getting worse every round.
The extreme rash was only a week before my 8th infusion, so I seem to have late responses.

Any smart ideas?

Thanks,
Sabine
 

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himynameiskevin's picture
Replies 29
Last reply 12/2/2010 - 6:38pm

Sorry for my absence. Been thinking about you all a lot. It's been a pretty busy month... a lot has happened. I'm not sure where I left off but here's an update...

Well,exactly one month ago I had my CT scan and two days later I found out that IL-2 was unfortunately not my magic bullet. But, I like to think that since it didn't work on me, I've raised the odds for it working on someone else. So that's good. They did say I may have partially responded due to the slight softness and shrinking I felt on my chest and back, but those ones don't really matter and it's not enough to call for another round. So.. since then...

During that appointment, my doctor had mentioned "adoptive cell therapy" clinical trials, a therapy they offer in Bethesda MD at the National Institute of Health to qualified patients, it was actually the first thing he mentioned months ago but I didn't qualify because my brain lesion, but since then, that's been cleared up, and with 3 months of clear brain MRI (which they require), I might be a good candidate. So him and I made some calls, set up an appointment, and I flew to Washington DC. I got to the NIH, went through security, checked in, got my badge, did all my necessary blood work, urinalysis, chest scan, EKG, all the loops and hoops over the course of the day, and finally met with my possible team of doctors. I was supposed to go home and they'd call me in a week to see if they'd even accept me, but, miraculously, they accepted me then and there, and asked me to stay two extra nights to do a surgery and remove the mass from my back. The next day they wheeled me to the OR, put me to sleep, and I woke up feeling great having that thing off my back. Finally.

By the way, a brief summary of adoptive cell therapy: They remove a tumor or piece of a tumor to extract some natural t-killer cells from it. Then in a lab they see if they can harvest the cells. Usually they can, sometimes they can't. If they see they're growing, they continue to harvest, possibly for many weeks, until they have about 6 billion of them. Then there's a three week procedure where they give them back to you. And then you wait, hope and pray that these t-cells are abundant enough, strong enough and smart enough to recognize the bad stuff and go to town on it.

So back to the update. Less than two weeks after the surgery they called me to tell me that cells were growing. Big relief because if they don't grow.. well then there's no cells. They said they'd call when there were enough for me to come back. And again, miraculously, I got a call two days later saying that my cells are growing phenomely fast (faster than they'd ever seen.) and that looks like I'll be starting the therapy a lot sooner then expected. So I flew back out the next day for prep work, another brain MRI an abdomen MRI and a CT scan of my chest along with more blood work and a long morning of phresis where they took a bunch of white blood cells for 4 hours. Then I flew home with an appointment to come back this Sunday/Monday and start my 3 week therapy on Tuesday.

Tuesday, unfortunately will consist of me starting a week of traditional chemo, not to target the tumors but to kill my immune system, they want it gone so it doesn't effect or "water down" my new immune system.  Then on the second Tuesday, they give me my cells back with a week of IL-2, just like IL-2, one bag every 8 hours as long as tolerable. Then the third week is recovery week, getting me back to normal so hopefully I can be home before Christmas. Then as I said, I just wait hope and pray until they call me back and scan me.

So that's that. It's been a long and busy month.  

I'll have to browse the past posts and see how you all are doing, but I Hope everyone is doing good, staying positive and enjoying the day off today, hopefully with some good company.

Talk to you soon. -Kevin

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JohnHen's picture
Replies 17
Last reply 12/2/2010 - 5:28pm

 

I am a new member of this exclusive club and I am searching for some thoughts on a few questions. On Tuesday, November 16, I had a sentinel lymph node mapping and a wide excision on my back left shoulder for an ulcerated tumor that was first noticed mid August as a tiny bump,and initially removed about 4 weeks ago. The pathology after surgery came back as: 

Breslow thickness: 7 mm; Clark level: 5; mitoses: 15/mm2; ulserated

13 lymph nodes were removed with two positive for macroscopic cell growth both inside and outside of the two nodes

Clear margins were achieved except for the bottom where only 1mm clear tissue could be achieved before hitting muscle

Presently, I have no symptoms or indications of any other tumors.

I have been doing a lot of reading so I have a pretty good idea of where I stand statistically. My questions today are:

1. How long should I wait after surgery for the PET scan in order to avoid false positives?

2. Living in Southern California, what would be the best center(s) for melanoma treatment? As of Jan 1, I will have a PPO that includes City of Hope, Ronald Reagan UCLA Medical Center, UCSF Medical Center, and I believe Univ. of Stanford Medical Center. Possible others but I have seen these rated high as overall cancer centers. My current HMO will allow a second opinion after my PET scan so I should be able to at least pick the center to get started.

3. Depending on which stage i am at after PET scan, can you suggest the most beneficial treatment to pursue. I am open to clinical studies.

Heck of a way to begin our retirement as of July 1, but we will do all that we can do and hope that I can survive until a true cure becomes available. I appreciate your thoughts in advance.

John, 58, healthy and hopeful!

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davekarrie's picture
Replies 13
Last reply 12/2/2010 - 2:21am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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ErikaHouston2's picture
Replies 6
Last reply 12/2/2010 - 2:05am

Does anyone have any experience with Remicade & Melanoma? I am recently diagnosed with Crohn's and GI doc wants to start me on Remicade and is not concerned about the melanoma, The MD Anderson Dr. or melanoma did not say flat out "no" but they were not excited about it and thought I should attempt other treatments first. Remicade is a TNF blocker and scares me, not sure worth the risk.

My melanoma was stage I.

Thanks for any input you may have.

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/2/2010 - 1:45am
Replies by: LynnLuc, Anonymous, Rocklove, King

Anyone on the NCI Moffitt  Florida mdx-1106 trials??? Would appreciate any feedback. thanks chris

 

"Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy.

http://www.clinicaltrials.gov/ct2/show/NCT01176461?term=mdx-1106
http://www.clinicaltrials.gov/ct2/show/NCT01176474?term=mdx-1106

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