MPIP: Melanoma Patients Information Page

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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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fonteman's picture
Replies 8
Last reply 9/27/2010 - 4:27pm

Hi,

This is all new to me.  I just went to my doctor and had a spot on my neck removed.  After the biopsy they said it was in fact Melanoma and I go on the 25th to have a wider area excised.  They said the Breslow level is 1.27mm with margins or markers up to 1.5mm and a Clark's level III.  What I am wondering is should I be worried??  My dermatologist referred me to an oncologist and I am now waiting on that appointment.  I know nothing about all of this except what I have researched online and that can lead me to think everything is okay at the same time lead me to think everything in not okay.  If anyone could offer some advice I would greatly appreciate it.

Thanks in advance!

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ErikaHouston2's picture
Replies 3
Last reply 8/16/2010 - 5:54pm

Of course I am paranoid of anything that is not quite normal...but have had back pain (dull ache) for a little over a week now that is not getting better. It also seems to move around (can't pinpoint exactly where it is). I was diagnosed with Stage I nearly 2 years ago, and had WLE. I have since recently had a Chest Xray as well as an abdominal CT scan (for unrelated GI bleeding). Would either of those scans show possible mets to spine? I am treated at MDA and trying to get in again to discuss this with the MD, just curious what others have felt that have had mets to spine. 

I'm just so paranoid as I have two small children. Feel free to tell me I am overreacting as well !

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Nancy's picture
Replies 7
Last reply 8/18/2010 - 3:38pm

Buddy was hospitalized yesterday - his blood count was 8 - so they're keeping him overnight and transfusing.  Hopefully, when they check him this morning, he'll have the 'Blood of an Irishman" flowing through his veins, and will get to come home.  He had the IPI treatment last Tuesday and I think it may have made him a lilttle weak...but we'll get him patched up soon and back in the orchard (I Hope).

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davidroten's picture
Replies 5
Last reply 8/16/2010 - 1:06am

Can anyone tell me about how long does it take to get over interferon treatments. We have finished our treatments and the wife seems to be as tired as ever. How long before side effects go away. Contact me at woodworker1239@hotmail.com

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I have spoken to sue just a little bit ago. There is a little improvement with Jerry, but still not doing well. She said the only thing that they need as of right now is a place to stay.  I am currently working on trying to contact friends and family in Denver area to find them a place to stay as I live to far away. If anyone in the Denver area or close surrounding has the space for 2-3 people or if anyone knows any one living in these areas that would be willing to open up their homes to the family that would be a great help 

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Sharyn's picture
Replies 16
Last reply 8/17/2010 - 5:01pm
Hi everyone,
I sent this out as a personal email to many of you, but I wanted to share with my whole MPIP family.
 
In my last update, I was expecting a call any day to go start the Ipilimumab trial in Montreal. Well, the call still hasn't come. Apparently there's some bureaucratic hold-up with the IRB (Internal Reserarch Board). Dr Mihalcioiu had decided on July 15 that he would use my lung and breast tumors as a baseline to measure progress, so on July 28 I had an ultrasound and x-ray to record the starting point, assuming we would start within the next few days. Everything seemed in order.
 
However, within the next few days, I developed a huge golf ball sized lump on the side of my breast and it was quite painful. My family doctor, Marie O'Dea, put me on an antibiotic and pain killers on Aug 4. The next day, the lump broke open and discharged a lot of the infection, and I've been having to continue to drain it twice daily ever since. (Talk about gross!!!) I saw my oncologist, Dr Rorke, and radiation oncologist, Dr Norman, on Aug 9, and both recommended a mastectomy. (I had already emailed Dr Giacomantonio in Halifax, and that was his recommendation as well.) Apparently, the centre of the tumor has died, and the necrotic (dead) tissue has become infected. The only way to get rid of it is to do a mastectomy. A lumpectomy is not an option, as the tumor mass has now taken over more than half of my breast, and is over 10cm in diameter -- bigger than a baseball.
 
So on Aug 10, I saw my surgeon, Dr Pace, who concurred with the other doctors, and put me as high priority on his OR list. Tomorrow (Monday) I will have my pre-op tests, and the mastectomy will be done on Thursday. He will also excise most -- if not all -- of the 10 tumors on my leg. They're not causing any trouble, but if they're gone, I won't have to worry about them.  I might as well get the best bang for the buck on the general anesthetic.  I'll be kept in hospital overnight, and discharged the next day.
 
I've been trying to come to terms with the mastectomy. I don't mind the fact that I have to have surgery, and if it was just to have another chunk taken out of my leg, it wouldn't bother me a bit. But the thought of losing a breast is a very personal thing for a woman, especially with my generous endowment.  But the alternative sucks, so it's a no-brainer, and I just have to suck it up.
 
Meanwhile, the way things are going, I expect I'll have the surgery and be fully recovered by the time Montreal gets its act together with the Ipilimumab trial. So that treatment is still on the horizon, just delayed for a bit. Say a prayer for me Thursday.
 
Hugs
Sharyn
Stage IV
 
WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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emilypen's picture
Replies 12
Last reply 4/5/2011 - 12:17am

HI All,

This is my first time posting, after lurking for a while.. laugh

My husband was diagnosed  Dec. 2008 with stage 3B after he had a mole removed on his chest, it had spread to 2 lymph nodes so further removed another 30 nodes in that side of his body. He did the high dose interferon and then was given a clean bill of health for almost a year.

June 2010 - we went to the emergency room because he had severe chest pain, and after a CT scan and x-ray they told us he had a soft tissue tumour in his upper left back area that was pressing on nerves and causing the chest pain. They also discovered 4 lytic lesions on various bones in his back and one in his jaw.

He tested Braf positive so our doc tried to get him into the Roche trial but he was "randomized" ( god i hate that word!) to the dacarbazine arm. He's done 2 cycles of that and he had scans on the 11th, the trail nurse said the scans show some progression. We see the doc tomorrow to hear the full story.

We also meet with a new doc tmo to see if he can get on the GSK Braf/Mek trial, which our current doc thinks is likely. (he reserved a place for him on the trial even before the 2nd cycle of dacarbazine)

Just wondering if anybody else out there is doing the combination trial? side effects? is it working?

Also any advice on how to fight the fatigue that comes with morphine? My husband is on 30mg slow release x 2 a day, with 5 mg for breakthrough ( which luckily he rarely needs to use), but he could sleep for 12- 14 hours every day.... or longer if i don't wake him up.

He's also seeing an integrative oncologist ( chines herbal medicine) who is a medical doctor just trained in chinese meds as well who has him on a herbal tinture that seems to be helping him. He doesn't look sick or feel sick, just major fatigue.

We also have cut out, gluten, sugar and cow dairy.

We're doing anything we can. He is so positive and convinced he's going to get better, it's just a matter of time and the right meds... i think sometimes i'm having a harder time dealing with it than he is... lol

Oh well... any and all advice or info appreciated.

thanks,

Emily

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Janet2's picture
Replies 3
Last reply 8/15/2010 - 1:05pm
Replies by: Janet2, Sharon in Reno, King

My CT scan just over a week ago revealed that the tumours on my liver and in my lungs have increased in size, plus there is other new stuff. I have been turned down for Ipilimumab on compassionate grounds because of other health problems so I'm starting carboplatin on Tuesday, plus the injection in my stomach to boost white blood cells the day after.

Janet 

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Jackie W's picture
Replies 53
Last reply 9/5/2011 - 5:34pm

Jerry had a bad accident last night.  He fell off a horse and was dragged.  He was airlifted to a hospital in Denver.  I just got off the phone with his wife Sue and she told me he is in critical condition.  He broke some bones in his face and needs surgery, but he can't have it yet because he is having respitory problems.   Please send prayers his way.

 

Jackie W

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Sharon in Reno's picture
Replies 6
Last reply 8/16/2010 - 7:53pm

just cuz.....I just signed up to get Showtime so I can watch the "The Big C' this Monday night at 10pm with Laura Linny (did I spell that right?). Can't wait to see how they play this out. Grey's Anatomy was too dramatic lets see how a little comedy can help spread the word. I like laughter, has saved my sanity many times....we'll see.cool love ya, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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Sharon in Reno's picture
Replies 16
Last reply 8/15/2010 - 6:32am

Hi All...just an update on what I'm doing...

Last Friday I was doing a PET scan, was in the machine and 30 minutes go by and I'm crying in pain, it's my back right where the #4 rib is, digging in my back. I can't do it and beg the guy to let me out, he does. They want to sedate me but I don't have a driver..oh well I say, catch me next time. I go do my left arm ultra sound, no problems. Monday I do a CT scan (no problems) results are back and I now have 2 new lesions on my chest wall right next to my #4 rib....flash forward after seeing onco & surgeron...they want to do day surgery  on Aug. 31. So surgery is set to remove the 2 new lesions on my left chest wall and the lump under my left arm...then we look at Ipi....geez...scar count is 27 and holding.....so thats the latest with me. love to all, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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liz in Aust's picture
Replies 23
Last reply 3/27/2011 - 9:36am

Hi I am 36 and live in country Australia.

I was diagnosed in 2006 when my baby was 8 weeks old.

Had surgery in May 2006 to remove 3 large tumors from my adbo, along with 3 section of my small and large intestine.( the diesese was in the myestenty of my bowel) had more surgery in 2007 to remove 1 small tumor from beneath my kidney and i had then been clear for 3 years just having blood tests and CT scan every 3 - 6 months.

I had a recent positive scan in June after feeling a bit "off" and now have 2 main tumors in my abdo and many small nodes, they tried to surgically remove these but when they operated thought there was too much diesese to be able to completely remove it all, so did not want to put me though a huge operation and recovery. So they only removed one small easy to get to tumor.

They tested the tumor for the Braf mutation and found it to be negative which was very disappointing.

I have just started DTIC (or dacarbazine) and have finished the first cycle. they will rescan me with a ct after 3 cycles to see how it is going. Currently my belly is quite swollen and tender but generally feel ok.

If the DTIC  does not work they plan to give me Ippiliumabab in Melbourne.

I see a local oncologist in my home town of Albury and Prof Cebon ( Mel specialist in Melbourne). Being a country patient it makes it hard to get info on treatment options etc.

I am feeling quite desperate and wanted some advice on other options people have tried that I could also look at, that maybe I have not considered or been offered, and appreciated any info.

Thanks Liz 

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mifis's picture
Replies 3
Last reply 8/14/2010 - 8:19am
Replies by: W., mifis, Janner

Hi there,

I was diagnosed with melanoma in situ on my upper left arm in May 2010. The original biopsy was done by the dermatologist and I went for a further excision of the area in June. The patho report of the 2nd excision stated that there were atypical melanocytes along the lateral margin. The plastic surgeon felt that with my skin type (fair and freckly) and background (Australian raised) it would be highly likely to find atypical melanocytes anywhere on my body and recommended to leave it and wait and watch. The pathologist recommended a further excision. I spoke with my primary and dermatologist and the derm spoke with the pathologist and I made the decision to go ahead with another, wider excision, in the search for the elusive clear margins. That was 2 weeks ago and I just got the report back and there are more atypical melanocytes. The plastic surgeon thinks I should leave it alone, but said he spoke with the pathologist, and it was suggested that another biopsy, perhaps a punch biopsy, could be taken on the same arm, but 2 or 3 inches away from the original site, to see if there were still atypical melanocytes. The thought is that if more atypical melanocytes are found, it could be fairly safely assumed that it is just my skin's long-term sun damage and not a reflection of any activity relating to the original melanoma. The plastic surgeon was careful to explain to me that atypical melanocytes are NOT melanoma cells, but I understand that the detramination is fairly subjective.

Does anyone have a recommendation for me or experience with similar?

Further, I asked the plastic surgeon to clarify for me that it was still considered "in situ" which he affirmed. I also asked him if a type of melanoma had been identified and he said that "in situ" is the type and that the other types (nodular, lentigo etc) only related to invasive melanoma. I wasn't aware of that.

 

I appreciate your responses and your help. I have been on here before with the same issues along the way, but feel I need some extra clarification with each step and I am really grateful for your support and advice.

 

Blessings!

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Bill G's picture
Replies 2
Last reply 8/14/2010 - 10:47pm
Replies by: Tim--MRF, Sherron

Haven't seen her post for some time.  Hope all is well

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sharmon's picture
Replies 2
Last reply 8/13/2010 - 9:03pm

We were suppose to travel Angle Flight to Huston Sunday for a Monday appointment.  Angle Flight cancelled due to bad weather.  We can drive it but it is 18 hours one way.  I contacted Md Anderson and they  were proud of the fact they are contracted with Continental and it will be (with discounts)  $953.00 each.  Then I contacted my social workder at the hospital and she sent me to Financial Assistance.  They had no idea why I would be transfered to them and referred me back to Travel Assistance.  She then told me Southwest had a fare of $639.90 each but they were on contracted with them!  What the ***+)_(*^*&%*(&(*.  I called Air Tran and found 1 stop air fare on my own for $579.00 each. 

Any one else have any ideas.  Could you any feedback you might have.

Sharmon

 

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