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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Melanoma Mom's picture
Replies 37
Last reply 12/7/2010 - 2:45pm

We had another visit to Dana-Farber on Tuesday. It was supposed to be an easy follow-up on our 14 year old son's two SNB surgical sites ..... never assume anything will be easy!  Josiah's body is trying to reject the dissolvable stitches and he had signs of a slight infection in both spots. So the surgeon cleaned, poked, prodded and packed the wounds with gauze - no pain meds or anything. Josiah was stoic as the blood ran, literally. What we had hoped might be a nice family day in Boston afterwards was not to be (we had brought his two younger sisters (ages 8 and 12) with us this time - a first to the hospital). Josiah was SO upset/mad/devastated after the appt. and he cried and raged inside the car. SO hard to witness and the girls were upset too. We finally got everyone calmed down enough to go out to dinner. Soon the kids were all laughing, but my husband and I felt like we had been run over by a mac truck - once again. I felt such pain in my heart for my son, as well as my daughters, who now have a very different life too.

The Oncologists and surgeons are strongly suggesting that we have Josiah try Interferon. I have been the hesitant one ... knowing the limited success and the possible side effects. But Josiah is adamant about trying it. I am fearful that if I put my foot down and tell him "no", he would blame me subconsciously if the cancer comes back. My husband also thinks he should do it. So that is the plan ....

We are able to do the treatments in Maine where we live and I have set up the start date of December 13th so that 2.5 weeks of the first treatment month will fall during his school break. I am looking forward to some time off from driving to our stressful visits in Boston .... 7 trips in 7 weeks, two surgeries, one devastating diagnosis, hours of scans - enough! Hopefully we can take December off from going there and can enjoy some of the holiday season here in Maine, especially the few weeks before he starts treatment. 

Please hold Josiah in your prayers .... children shouldn't have to fight cancer, but no one said life was fair.

stage IIc

NED - 8 days and counting .....

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vivian's picture
Replies 8
Last reply 12/7/2010 - 1:53pm
Replies by: vivian, ChristineL, washoegal, Janner, lhaley, Anonymous

Hello All,

I was recently diagnosed with nodular melanoma, currently staged 3a after PET/CT and SNB.  I am awaiting the CLND.  On Thursday I saw my dermatologist for the first time post diagnosis.  He did a simple full body check, without any special scopes, just his eyes.  At no point did he touch my skin (I would really rather he not touch me, but...).  Since my primary melanoma was atypical in that it was not differently colored or asymmetrical, shouldn't he have been more hands on, so to speak?  I am not feeling really confident in him since he did a shaved biopsy twice on this lesion, neither of which came back as melanoma, and by the time the excision was biopsied,  it was deep.  The SNB  was positive for one of two nodes.  The reading I have done on dermatology sites say that a shave biopsy should not be done on a suspected melanoma, so perhaps he wasn't wrong.  However, I am wondering what happens to all of you when you see your derms?  Do they just "look" ?  Since at this point I will be "watching and waiting", I want the watching to be really good.  I would love to hear what happens when you, my colleagues in this fight, visit the dermatologist. 

Thank you and here's hoping everyone is having a wonderful Sunday,                                                                                                                                              Vivivan

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Replies by: Anonymous, molly

I had the CLND from under my left armpit and am recovering well. I HATE the drain tube but getting used to it I guess.  I go back on Dec 13 to get stiches out of WLE and tube out.  The Dr. called yesterday and said no Mel showing up on PET scans and blood work good. One thing he said that there was some scarring on my lungs that could be from pneumonia or other infection. I have never had pneumonia that I know of so that was curious. I have a call to talk with them again to see what could be causing the scarring.  We meet with oncologist next Monday as well to discuss further treatment.

Live life to the fullest and enjoy each day!

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mzeigler's picture
Replies 8
Last reply 12/7/2010 - 9:10am

Hi,  I am a caregiver to my wife who started with acral melanoma in her right thumb in 2003.  She had the top of her thumb removed

and was fine until 2007.  Then there was a reoccurance happened on the thumb and the whole thumb was removed.  All scans were

negative until 2009 when she showed a small lesion on her lung.  It was removed surgically and melanoma was confirmed.  Next

scans were clean until Aug of 2010.  She had 2 hot spots on her liver and one on the bone of her left arm.  After 2 rounds of il-2 and

no positive results, we got into an ipi trial in Bethleham, Pa.  It's been a week since her first infusion,  with some fatigue.  My

question is during the past week,  she has noticed some aching in her upper right arm which wasn't happening before the ipi started.

Is this related to the ipi drug?  It seems to have happened very suddenly with the starting of the treatments. 

She is 53 years old, an elementary principal.  We have been married 31 years and have 2 sons.  This is my first post.

Mike

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nicoli's picture
Replies 5
Last reply 12/7/2010 - 12:18am

I'm stage 3 and the onc is thinking of using radiation to kill mel cells that are left after  wide excision surgery of several months ago. We know there are remaining cells because 2 mets have recently been found in that same area, one rising up right under the graft skin! I have read that radiation isn't very effective against melanoma but can't seem to find facts or figures. Anyone here able to provide accurate information?

Nicki, stage 3b, dx 12/29/2009

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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jolainajo's picture
Replies 2
Last reply 12/6/2010 - 9:32pm
Replies by: glewis923, MaryMary73

Hi Everyone,,,, I need some posativitiy in my life... Well, to tell you a little about myself, I am Stage IV diagnosed 1 yr ago. I have been through IL-2, didnt work, went to Maryland at NIH in June, went through everything that Kevin has described, and it spread to my brain. In Sept I had stereotactic done and now I see things, and I feel when its coming,, When I say see things, I see this round circle that beats with my heartbeat and is a rainbow. I have talked to my oncologist and they say its from the radiation I had gotten so I try to let it go. Now Im on Ipi and I go for my third infusion on Friday. I just found out on last Thursday that My Medicaid is now being closed and I will have no health insurance, well... they gave me a 500 a month spend down which means that I have to pay for the first 500 and then medicaid will pay, but this is all because I got disablility, at 1000 a month. Im frustrated. I was a Dental Hygenist making good money 2 yrs ago, now Im not working, and have all this stuff going on, and now... Christmas is here. Dont get me wrong... Im glad just to be here, but, Im depressed, Im sad, and I have these stupid tumors that are a constant realization that I have melanoma. Its getting hard to even sit because I have this one tumor on my leg that is HUGE>>>>  it hurts and I have to pretty much live on ibuprofin. I guess I come on this website to see that Im not alone, even though I feel like it, I know that you all are living with this monster too, and Im not going to give up so easily, I guess I need some support,  Im scared, and I think about how I dont want to go, and I think about my kids who are 15 and 11, and my husband, and it all makes me cry, and somedays I do cry, alot. But, I try to not think. I guess this is what it is... right.... well, if you have any words of encouragement I need it, or ways to help that you have done to get through this whole financial crap with insurance, or just to let me know you know. how it is... Please... well.. thank you.. Jolaina

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I have been in touch with a reporter who has written extensively about the Plexxikon/Roche BRAF inhibitor.  The next and final article will focus on people who have taken this drug and had an initial response, but now have developed resistance.

If you fit this criteria and are interested in speaking with a reporter please drop me a note and I will pass your contact information along.

Thanks

 

Tim--MRF

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Hi everyone,

  The leg infection continues, got on augmentin twice a day for 14 days, then once a day for "months". I asked my surgeon yesterday about doing a wound vac and he said YES!! So it was ordered, I'll have it Tuesdy and will go down to DHMC for the nurses to put it on and for the doc to decide to what level he wants the wound brought to (I dont know the terminology here but the acti vac people said he will decide how long it is to stay on and check me weekly or so). I am so happy as 6 months with open wounds feels like enough!!

 And regarding leg amputation....NOT going to do that....I just feel that 1. my melanoma will return elsewhere, the last new spot is pretty high up on my thigh, and 2, the wound from the amputation isnt going to heal and THAT will kill me. heck, I cant get two small spots on my lower leg to heal. A stump wound to heal? Not going to happen in my estimation. So thats where I stand.

Thank you everone who responded and who may still respond. it definitely helps to read all of this!

Vermont_Donna

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djpayn's picture
Replies 4
Last reply 12/5/2010 - 9:07pm

Hi all.

For about 4 weeks now, i have been plagued by severe nausea and an upset stomach. i saw my onc who ordered a abdomen scan, that came back with negative results for any tumors, cysts, ulcers, etc...

during the past 2 weeks, i have lost over 15lbs.... i have no appetite and just the smell of food makes me nauseas. i am managing a pb&j or grilled cheese every couple of days, but not much else.

my doc wants to send me to a GI doc for a scope....

i will probably have this done soon, but wanted to see if anyone has had any similar experiences -

im not currently on any meds that would alter my eating habits and the progression on the stomach problems is increasing. i have considered this could be a stomach bug, but OTC medicines like pepto do not help either.

thanks for any input....

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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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