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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shellebrownies's picture
Replies 8
Last reply 8/27/2011 - 1:28pm

By the grace of God, Roche has given Don approval to join the expanded access vemurafenib trial based on his earlier positive BRAF result. (The test conducted by Roche on the tissue sample we provided came back negative, even though it was from the same sample that had tested postive on GSK's test in May).

He started the medication today and it was none too soon; he has had increasing back pain in the last week that we are still in the process of controlling.

We still do not know the outcome of what will happen when he is transitioned off the trial once the drug becomes commercially available, but for now, we are happy to have access to the drug at all.

Thank you, everyone, who has kept us in their thoughts and prayers; I cannot tell you how much that has meant to us!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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boot2aboot's picture
Replies 10
Last reply 9/4/2011 - 4:51pm

 

Peptides and Montanide ISA 51 VG with Escalating Doses of anti-PD-1 Antibody BMS-936558 for Patients with Unresectable Stages III/IV Melanoma....it was recommended to me but i still can;'t figure out my HLA type...i got test results back and can't make any sense out of it...anyway, please let me know if anyone on this board is on this study and how they are doing...thank you

boots

 

don't back up, don't back down

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i have known a few cases of rudeness and ill treatment on the BB.  This is not the norm.  This group of people is the most undertnding and compassionate group that I have ever met.   We made it to Colorado tuesday with only one day of tire trouble and then  Laura Downs, whose husband died from melanoma in May 2010 came over to visit us.  She is a wonderful compassionate young lady with a delightful 2 year old daughter that is studyig to be an Oncological Nurse to help in the fight against what melanoma is doing to so many of our group.  She was much appreciated by my wife last year when I was in the Denver and Springs hospitals.  She was very helpful and gracious in spite of having just lost her husband and the father that loved his baby girl so much.

   We received so many great messages and help from you people.  They were read to me, even though I was unconcious then. (Acutally I have just been findiing more of the messages from then.)  Tanya did a great job of saving everything for me as well as keeping y'all informed of my status.  And people from Colorado visited me in the hospitals out here.  I had never met these people in person before, just thru the MPIP BB and chat..    As I discussed with Laura, It is amazing the closeness that we can develop with each other going through this struggle.  And most amaziing is the wonderful people that we encounter on this journal.

I'm me, not a statistic. Praying to not be one for years yet.

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TracyLee's picture
Replies 9
Last reply 8/25/2011 - 9:28am

Hi y'all,

Well, I am definitely a BRAF responder, and we all strongly suspect a delayed ipi/Yervoy responder!

Nasty/ugly but tolerable rash from below my neck, down my entire body. Began last week, so virulent that my local onc in conjunction with U of Penn, took me off of BRAF for a day or so.

Then, last night...blurry vision in my right eye. This seems more of a ipi side effect than BRAF. Called local onc, and U of Penn. Hauled to ER, assessed, seen by eye doctor today. It is slowly resolving.

My eyesight is terrible anyway (I'm an 11 diopter correction!), so I don't mess around with my eyesight.

The eye doctor did NOT feel it was a side effect. Personally, I do, particularly in conjunction with the rash.

Thoughts? Anyone else have sudden blurry vision, which resolved fairly quickly?

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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JennerFromIowa's picture
Replies 11
Last reply 8/24/2011 - 7:35pm

Hi,

 

Haven't been on here for quite awhile.  I get on once in awhile to see how people are doing but am mostly just trying to "live life".  Next month will be my 9 year anniversary with good old NED.  (I had a 1.53 mm, ulcerated melanoma, mitotic index of at least 17 mitoses per square mm., lymphocytic host response of +2 on left hip)  I just had my onc appointment in June and he says he doesn't need to see me anymore....that it is highly unlikely that it will come back after this long.  As much as I believe that is probably true, I don't want to risk anything either.  I have been followed with chest xrays and lab work once a year with a different onc that doesn't come to my area anymore so switched oncs.  Not sure that was a great idea but this guy was supposed to have more experience with melanoma than the one before.  I do still see the dermatologist once a year too.  What kind of follow up are other Stage IIA people out there receiving?

 

Thanks so much for all you guys do!

 

JennerFromIowa

Stage IIA 

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Jamietk's picture
Replies 4
Last reply 8/23/2011 - 5:27pm
Replies by: jackiewin, Jamietk, jyc

For the first time in 6 years, I am going to fly to MDA instead of drive. I'm on annual check up of chest x-ray and blood work only. My Dr. appt is at noon on a Monday in October. We will have a rental car to return at the airport. I'd like to take the 5:30 flight home. Do you think that's pushing it? There is also a 6:30 and 7:00 flight home but they cost more and get in later. I know the hospital has travel services with Continental and they waive the rescheduling fee if you have to change your flight. But they are twice the price of Southwest so I'd like to book through them. I will be my Doctor's first appointment of the day so he shouldn't be behind, especially since my only tests are xray and lab. Do you think 5 1/2 hours is enough time between Dr. appt and flight time, assuming there is nothing found on x-ray and bloodwork and nothing to really discuss further? We're usually in and out pretty quick but I am not familiar with the Houston airport and how long it takes to get there from the hospital, return the car, and get through security. Thanks for any opinions.

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Hey everyone just updating what's new.  I had an ultrasound of my lymph nodes in both groins where some of the nodes contained a hypoechoic lesion concerning for melanoma metastatic deposit.  Since the surgical oncologist can actually see this within the nodes he's set me up for an ultrasound guided biopsy this thur at VAndy.  Has anyone else had an enlarged lymph node or nodes that contained a "lesion" in the node that was visible by ultrasound?  Crazy thing is I had a clean PET scan done 2 mo ago but these hypoechoic areas in the nodes are just now right at 1cm in size and were not there 2 mo ago.  Thanks so much for your support and knowlege on this disease.

 

Much love,

Alicia STage 3a w/ 3 primaries

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awg's picture
Replies 6
Last reply 8/24/2011 - 10:09am

On Aug 12, 2011 I completed the last infusion of the 20 day cycle of High Dose Interferon. I feel that I was rather lucky as I only had side effects after the first Infusion and tolerated the Infusions fairly well. I am now on the 3 shots per week and experiencing little to no side effects from the Injections. I am grateful to have made the turn from infusion to injection.

Even though I did well on the infusions the difference that I feel now from being on the lower dose injections is remarkable.

Hang in there if you are on the High Dose Infusions, it gets better.

 

Allen

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nickmac56's picture
Replies 4
Last reply 8/27/2011 - 1:04am

We met with the radiation oncologist who is planning the treatment for my wife's spinal tumors. It's pretty amazing actually. We'd all love to find a systemic cure for melanoma, but in the meantime cut and burn is a way to extend life, often at reasonable quality of life. We were told my wife's spinal tumors we essentially untreatable, and a couple years ago they probably were (which would have led to debilitating pain and loss of lower body function). But now, with this new radiation equipment, they can fry enough without impinging on the spinal cord or other organs to buy her some good time (we hope). She has 12 identifiable tumors in the epidural space from her ribcage to lower vertebra and one in the tailbone. But the radiologists said that the entire area was likely cancerous, like a coat of sugar on the walls of the epidural space. Cyberknife is too precise, it could only hit the identified tumors. But the Tomo therapy radiation can hit the entire length without damaging the cord or organs - it's not precise enough to do a tiny tumor but not so big it causes damaage beyond what is intended. I think it's just incredible the advances they are making in this area. 

She is going to do 15-20 treatments over the course of the next 3-4 weeks. The key question is how much of a dose to the area - he wants enough to do the job (recognizing melanoma's alleged radiation resistance) but not so much it is toxic to area. And you only get one shot at this area - if there is any recurrence it can only be treated by a Cyberknife spot treatment. He's shooting for a total dose of 3,750 Gy. 

Side effects are expected to be pretty minimal, aside from fatigue. Unlike the old external beam radiation the way this works it avoids large doses to the organs so your stomach and intestines don't get all screwed up.

So our attitude has changed from being pretty morose to being somewhat more optimistic - that she can buy some time and good quality of life. It even got her thinking about the holidays  - that she might be around to enjoy them!

Nick 

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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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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