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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jax2007gxp's picture
Replies 14
Last reply 1/4/2013 - 1:38pm
Replies by: Anonymous, alicia, dutchchic, jax2007gxp, mclaus23

Hello all,

Well, my scanxiety (new word I learned today from Charlie S...thanks for giving it a name!!) is over.  The biopsy confirmed malignant melanoma.  I have an appointment with Dr. Jakowski at the Chao Cancer Center at UC Irvine on Wednesday morning.  I'm not wasting any time in fighting back!  The crying is (mostly) over and I'm ready to kick Mel's a$s!!!

Thank you to everyone who has been so supportive and shared positive thoughts.  It is greatly appreciated.  I'm sure I will be looking to you for more advice and shared experiences in coming weeks and months.

Jacki

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For My Sister's picture
Replies 9
Last reply 8/25/2011 - 1:29am

My sister, known as Mayeast on this forum,  but who was Cheryl Walters Zweeres, passed away last Tuesday, August l6, 2011 at her home.  She was 62 and was diagnosed exactly one year ago in New Brunswick, N. J. with nodular ulcerated Melanoma.  She tried interferon for one month until it affected her liver and  also trial E7080 in March until May until it spread more to her liver.  Then weekly chemo treatments until she developed blood clots and then was found to have further spread in her pancreas, spleen & bones.  My big sister was my hero and I know she would want all of you still strugglling to keep fighting.  God bless us all.

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Ashykay's picture
Replies 5
Last reply 8/23/2011 - 11:28pm

Hi everyone,

Just thought I'd provide an update on my Mum. As some of you may know, the oncologist last Thursday basically waved Mum out the door and said good luck, no more treatments for you (apart from Gleevac - for which Mum has not tested positive to the c-kit mutation, only c-kit staining, i.e. highly unlikely to work!). During this appointment, Dad and I took in all of the research we had found and started throwing them at him to see what he said about each trial/treatment we had mentioned. As part of this, we brought up Yervoy. He was incredbily negative about it and said it had shocking side effects and didn't target rare primary spinal melanomas like my Mum's. On our persuasion, he agreed to refer Mum to an immunologist "jsut to be sure", but again talked abotu side effects and that this is basically a useless option.

Was he wrong (I am furious, just on a side note....).....Mum went to the immunologist yesterday, who had some options for Mum. He knew exactly what he was talking about, was spot on with facts, and it had appeared he'd done some research which was very surprising considering that no other doctors had done this before. He hasn't ruled out trying to get it all out via surgery, however he suggested Mum start on a trial they are doing at this hospital in Brisbane, Australia (which is the same hospital as where the oncologist is - NOT happy. Do these people talk to each other? Clear not. Sounds pathetic if you ask me). The trial involves Mum firstly going onto chemotherapy - not as treatment, but rather as eligibility to access Yervoy. The doctors will then put Mum on Yervoy, and at the same time, they will go in and take a large (being 2cm of the 5 x 4cm tumour) section of the tumour on her spine and formulate a vaccine based on the exact genetic makeup of her tumour. My understanding is that the Yervoy has the effect of removing the protective "shield" on the tumour which prevents it being killed by the body's immune system, and while the shield is off, the vaccine has the effect of going in and killing the tumour.

There are obviously risks with this approach - side effects of treatment itself as well as the surgery which is always going to eb risky due to the position on the sacrum. The immunologist told Mum that her chances of significant side effects would be 1 in 100, and I believe she is prepared to take this risk.

I'm not sure whether anyone has been through this treatment/trial before? I know quite a lot of you have been on/are on Yervoy? Would appreciate feedback :)

Feeling very relieved that someone is listening to us now and willing to trial something. I am trying not to get my hopes up despite being so happy and excited about this, as it seems we always get disappointed everytime we get our hopes up. Dad adn I will continue our quest to follow up doctors in Sydney, especially with respect to schwannomas - which they don't believe it is but we want to be sure.

Will keep you updated! Ashley

 

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PlantLady's picture
Replies 9
Last reply 9/3/2011 - 10:29am

My husband Ron started Yervoy in June 2011, and had a second infusion in July.   He is stage IV MM w/no primary. His Yervoy treatment was suspended in August due to the side effects.

He lost weight right along, with the worst weekly weight loss being 8 lb, and another bad week w/ a 6 lb. loss.  He had diarrhea about 6 or 7 times a day, loss of appetite, weakness, overwhelming fatigue.  He's gone from 190 to 160 lbs. He's developed drop foot, and has lost so much muscle, including loss of his voice due to muscle weakness in the vocal chords.

He was put on steroids for the diarrhea, and takes Imodium twice a day, and still has 4-6 episodes of diarrhea per day, but his appetite has returned.

It is rough seeing him get so thin and frail looking!  He hasn't had an infusion since July 13.

He had a PET scan yesterday, and we will go to the University of Michigan Wed to find out what our future holds.

Has anyone else out there on Ipi suffered from D and been put on steroids for it?

Has anybody else had muscle wasting, and what have you done for it?

The doctor says the diarrhea and weight loss could be a positive indication that he is responding to Yervoy.  We'll see in 2 days. 

CJ - Ron's wife

If you're going through hell, keep going. ~ Winston Churchill

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Gwing's picture
Replies 7
Last reply 12/27/2012 - 6:47pm

Hi, I was diagnosed Stage 3a in 2005 and went through 4 rounds biochemo at UCCC.  Everything was looking really good after 2 years, so through IVF I became pregnant and had my first at the end of 2009, got pregnant again (unexpectedly/naturally) and had my second in March of 2011.  I haven’t had any scans since 2008.  My last head MRI was early 2009.  For a long time now, I always feel slightly buzzed or dehydrated.  I don’t know how else to explain it, my head feels a little heavy and I always feel on the verge of getting a headache.   I can’t concentrate well, am really forgetful and I feel my vision is splotchy or dark, or I will see things out of the corner of my eyes.  I have discussed this briefly with my Onc in the past and he said that its most likely chemo brain.  I am concerned that it may be slowly getting worse.  I can’t tell if it is, or maybe due to lack of sleep with my kiddos and all the hormones?  Shouldn’t I start feeling better?  Should I ask for another scan? 

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See:  http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/1931826

Best wishes to all fighting this beast...  Gene and Judy

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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AlanM's picture
Replies 4
Last reply 8/23/2011 - 7:13am
Replies by: Lisa13, AlanM

I started Yervoy last week and up until today had not really felt any side effects other than an occasional "knot" in my stomach. Today my ability to concentrate has fallen off considerably and I am feeling slghtly dizzy. Has anyone on Yervoy had similar side effects? This is making work a challenge today!

Alan

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jimjoeb's picture
Replies 3
Last reply 8/23/2011 - 9:54pm
Replies by: dutchchic, jimjoeb, lhaley

I thought that I would pass on an idea that my husband came up with for mapping and monitoring our moles. He found a drafting template at the office supply store that has circles, triangles, etc. in pre-measured sizes.

He picked one that was large enough for all of my moles and then used a Crayola washable marker to trace the outline of the shape on me, around the mole and then took a picture of each one. Every month, we now only need to use the template against the mole and compare it to the picture to see if there are any changes.

Be Not Afraid-God is with you always Stage IIIa

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MariaH's picture
Replies 9
Last reply 8/26/2011 - 2:10am

My husband Dave goes in for IL-2 on the 29th.  According to him and his doctors, there is no need for me to be with him for the entire duration, although the hospital will allow me to stay.  We do have 3 children at home, so to be there would require some advance planning.  I am torn between staying with him, and being home with the kids.  I really do not want to leave his side during treatment.  His reasoning is that I need to be home with the kids and continue to work that week and to try to keep things normal.

Can you please let me know what your experience was?  I have the IL-2 list from Jane, and I know it says to have somebody stay with you if possible.  I am concerned about how he will handle treatment and what side effects he may have.  I want to stay with him, but can't be in two places at one time.

Thanks for any input you may have...

Maria

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Charlie S's picture
Replies 33
Last reply 8/23/2011 - 11:19pm

Nothing ceases to amaze me.  I've had more scans than many have had birthdays during all my seemingly perpetual skank prom dates with melanoma over my years. 

More often than not, my doc has had to drag me in for scans (usually after calling my mother !) because I  more often than not  would always blow them off. under the guise that I was busy living..  Scans were, and always have been a nuisance to me for many reasons.

I have this game of chance that I play with my doc prior to scans:  I always write down what I expect the results to be, put it in an envelope, lick it shut and when he tells me the results, I whip out my envelope to "score" how I did. .  Probably in most medical circles, that type of behavior would be considered as the ultimate smartass; but my doc is a nice guy and knows me well, so he puts up with me..

Tonight, after again blowing off scans for some time, I sat here and  stuffed my envelope in advance of my ct, pet and brain MRI tomorrow.

NEVER have I had scaniety, but  this time is different after stuffing my envelope.  I'm not looking for sympathy, good wishes or any of that., but know that there are times when we all doubt ourselves and when that happens is the time to step into your strength.

See, I'm not so tough after all !

Cheers,

Charlie S

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NicoleinVA's picture
Replies 5
Last reply 8/22/2011 - 12:13pm
Replies by: Janner, NicoleinVA, DonW, lhaley

I recently had WLE and SLNB; thankfully nodes were negative and margins are clear.  My surgery was preformed by surgical oncologist and plastic surgeon.

I am in the Hampton Roads area of Virginia (Newport News/Williamsburg) and my surgeon, Dr. Michael Peyer is the melanoma specialist in our area.  He recommends that I see him every 6 mos for 5 years as well as every 6 mos for skin checks with dermatologist.  This is the second time in 4 years this has melanoma has come back to the same spot and I'm concerned about reoccurrence, not in the same area as they took out alot of tissue, but in other areas of my body.

Any feedback of anything else I should do would be greatly appreciated.  I'm very diligent about sunscreen use now (I was not in the past), however at 44 years old this is a little late as I know I did alot of damage when I was younger.

As always, thanks for all your input.

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NicoleinVA's picture
Replies 4
Last reply 8/23/2011 - 10:01pm

Hello,

I recently had a WLE on lower left calf and SLNB.  The plan pre-surgery was to do a skin graft on calf.  At my pre-op consult with plastic surgeon he said there was a possibility he could close w/o skin graft.  I told him I was all for that as I know skin graft can cause problems.

I had surgery on 8/11 and they were able to close w/o graph.  I have a long incision on my leg (inch above ankle to two inches below knee) and it is very, very tight.  I'm sure part of this is due ot the fact I had a conservative excision done in this same are in May and they came back after melanoma diagnosis for more tissue.  Area around incision is very red and surg onc started me on keflex Friday due to redness, however incision is clean, no weeping, etc.

My question is this.....has anyone experienced this type of tightness and does it loosen up over time?  I can't put my full weight on foot yet due to tightness and it concerns me to some extent thought I know it is early.  Also, it's fairly numb but I'm assuming this is normal due to scar tissue/nerves and the fact that surgery was very recent.

Many thanks for your input.

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Angela C's picture
Replies 2
Last reply 8/21/2011 - 8:57pm
Replies by: Jackie W, Goddard71

Hello.

I am scheduled for SRS to a brain met and I'm having it two days before my 30th birthday. We have plans for my birthday and I'm worried that my face will be all swollen, and I've also heard that it can cause brusing. I just wondered how many of you experienced this and if there is anything I can do to try and lessen the swelling and bruising?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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I am excited for the first Music City Miles For Melanoma event which will be held Saturday October 8th at Richland Creek Greenway.

If anyone is interested in volunteering for the event, whether on the planning committee or as a day of volunteer, please e-mail me at kwest@melanoma.org

If y'all are interested in participating, please check out this event's First Giving page at http://www.firstgiving.com/melanoma/musiccitymilesformelanoma5k

 

Thanks!

Kristina

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