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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Rendergirl's picture
Replies 24
Last reply 4/15/2011 - 5:34pm

I'm new here, just diagnosed with at least Stage 2 Malignant Melano on my upper chest. Next week I go in for pre-surgical bloodwork and lymphoscintigraphy and the day after is extensive surgery and lymph node biopsy. The lymphoscintigraphy sounds scarier than the actual surgery to me, the surgeon looked me right in the eye and said it would hurt, and some people complained of burning. If anyone has had this, please can you tell me your experience?? Level 1-10 for pain? I know everyone is different, but I feel the more info I have, the better I'll handle it, and I'm terrified.

Thanks....

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Anonymous's picture
Replies 2
Last reply 3/30/2011 - 9:42pm
Replies by: MichaelFL, Janner

Hi everyone.

I have had mm in-situ, have hundreds of moles, sibling had mm in-situ- so I am high risk.

I see derm every 6 months and have had probably 50 + moles removed, most mildly atypical, some moderate, and one severe.

I just had a very normal light tan freckle thing removed from toe which came back moderately atypical, which was surprising.

Anyways, I am on edge again because I have so many strange looking moles.

I had photos taken in 2002 (4x6's) and then again in 2009 (Very large ones-- much better)

My question is-- I have now discovered probably 10 moles that have really changed since my 2002 pics, but NOT since my summer 2009 pics.

The change is obvious-- darker or just more irregular, but not horribly extreme. In other words- none went from being a spec to now 7mm!

They are all still small (less than 4mm) but maybe just darker, one has a little brown spot, another is darker and also looks almost like two moles attached.

Botttom line, none look too sinister, but clearly my body makes atypical moles that do look very atypical

Do you all think I should be just concentrating on my most recent pics (now almost 2 years old) and monitoring change from there, or removing all that have changed from 2002? Is it normal to have some chage over 9 years? (I have had two kids since the first pictures) so I imagine the hormones plated a huge part.

Thanks for any advice. I am really getting worked up and can't even keep track of rhat I should deal with first!!

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MaryMary73's picture
Replies 6
Last reply 3/31/2011 - 6:08pm

A girl I work with knows someone who passed away this morning from melanoma. She isn't sure if it was nodular or superficial spreading but apparently it was quite deep at diagnosis and ended up spreading to her brain quite quickly and eventually her spine and bones. She was 36 years old and a lifelong sun-worshipper. She leaves behind 2 young teenagers. So flippin' sad.

What drives me insane is the fact that we work at an insurance company that handles group Long Term Disability claims. We know all about cancer yet I have some coworkers who are actually SURPRISED that skin cancer can be deadly.

The only real wisdom is knowing you know nothing -Socrates

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/30/2011 - 8:40pm
Replies by: KatyWI

Hi,

I have a friend in yervoy/IPI compassionate expanded use trial. She finished 2 infusions. Does anyone know if the 3rd & 4th infusion will still be free  through the trial. She contacted BMS and no one will give her an answer.

Anyone out there in this yervoy/IPI compassionate expanded use trial that knows how is BMS is handling payment (or FREE) for those who have not finished their 4th infusion of IPI of this trial. The study nurse at her location site did not even have the answer.

Thanks for posting your reply

gayle

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Charlie S's picture
Replies 6
Last reply 3/31/2011 - 11:49pm

Here is a link to an article that might offer some insight into what possibly lies ahead for Medicare to approve Yervoy.

Though the article is about Provenge, a Prostate cancer drug, the similarities are striking when comparing to Yervoy.

Provenge is an immunotherapy as is Yervoy.

Provenge extended overall  survival about 4 months in trials, about the same as Yervoy

Both are pricey: Provnege is 93K, Yervoy (at least now) 120K.

The troubling part is that Provenge was FDA approved in April of 2010 and it will still be another 90 days, following public input, before Medicare gives final approval to pay for Provenge.  Lets hope it doesn't take another 15 months for Yervoy.

Anyway, here is the article:

http://www.charlotteobserver.com/2011/03/30/2183972/medicare-to-pay-for-93000-prostate.html

Cheers,

Charlie S

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lkinnaman's picture
Replies 9
Last reply 6/23/2011 - 7:25am

Hi All! I am so happy to find you! I am a fulltime parent of 2 young children and after growing up in sunny So. Cal., was diagnosed with Nodular Melanoma about a month ago, a day before my birthday, have had PET/CT w/contrast, WLE and SNB. Node is clear, excision is clear and is localized to the arm. Melanoma was found in the adipose tissue and a "small cluster of malignant melanoma discontinuous w/ main bulk of tumor". However, the pathologist cannot determine if this tumor is the primary or secondary site! The original shave biopsy came back with at least a Breslow of 1.8 and Clark level IV deferring to final path report after WLE.

Blood work has been unremarkable, except for a mitotic index of 9. There is no ulceration, no lymph-vascular invasion, perineural invasion to identified, tumor infiltrating lymphocytes and regression are absent,

A final complication is that I have had rheumatoid arthritis for 25 years with several treatments that suppress my immune system.

According to my oncologist, I "have a very unusual tumor". With this info, I really don't know what to do. Do I look into trials, get a second opinion, push for a certain treatment, if at all?

Any suggestions are so much appreciated!

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chet's picture
Replies 24
Last reply 7/13/2011 - 6:08pm

Hello everyone. It's been a while, sorry I've been MIA. Just out trying to live and enjoy life:) Anyway, I finished 2 cycles of IL-2, got through 9 bags the first time, then 8 the second time. I felt like I could've done more the second cycle but my whole mood and energy was thrown off by some of the staff at the ICU I was staying at. The lady who was wheeling me up to my room was telling me how she read in the paper that this healthy woman went in for a routine checkup, found out she had cancer, and died 4 months later. Umm, why are you telling me that? That put me in a really bad headspace.The nurse who was putting in my PICC was taking forever and having complications. Mid-week, the PICC sort of came out and they had to reput the PICC in my other arm.

I recover relatively quickly from IL-2, so after being discharged Friday morning, I'm back to my normal self by Monday or Tuesday. My doc says this is due to me being so young. The only discomfort I have is just extremely dry skin and peeling around the ears for about 2 weeks.

My oncologist scheduled me for a CT scan of my chest and abdomen/pelvis 4-5 weeks after the second cycle, which was about 2 weeks ago (March 14). I met up with her last week to discuss the results and I guess they we're good.

Good news is that my chest CT came back negative of any tumors or nodules (WHEW!). I do have a swollen lymph node on the left side of my clavicle that has been there since December 2010 that measures a couple cm long but the CT showed that it didn't change in size since then.

 I'm not sure how to feel about my abdomen/pelvis CT results. The CT of my abdomen showed that my liver, spleen, adrenal glands, pancreas, and left kidney appears normal (another WHEW!). There is a rounded 3.1 x 3.0 cm mass medial to the right kidney, unchanged. No new mass is seen in the abdomen. The mass next to my right kidney is what they initially found back in my CT scan back in Oct. 2010 that got this whole cancer ball rolling. The CT of my pelvis showed that there is a 3.4 x 4.8 cm mass next to my cecum. The mass previously measured 3.3 x 3.2 since my CT back in Oct. 2010.

So in conclusion, the CT showed that the lymph node didn't change in size, the 3.1 x 3.0 cm mass next to my kidney didn't change in size, but the other mass next to my cecum grew a little. My oncologist felt my lymph node and it felt smaller to her and she said she could actually feel a border around it this time which last time she couldn't so she ordered for me to get a PET CT scan the next day. Now I'm just waiting for her to compare the results of this PET CT scan with the one I had back in December. She's hoping the intensity changed. She's going to call me sometime this week to see tell me if I should continue on IL-2 or not. She wants to give this IL-2 another shot and I do, too. I don't feel I gave it my all the second cycle. 

Do you guys think I should go for another few cycles, then get another PET Scan or should I just start looking into IPI? I wonder if I even qualify.

Also, I wanted to start taking daily vitamin and turmeric supplements but she said not to. Did anyone else take vitamin supplements during IL-2??? I don't see why it would be a bad thing. I know this is a very long post, but thanks for reading if you made it this far lol.

Love and light...

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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KatyWI's picture
Replies 7
Last reply 3/30/2011 - 11:27pm

My oncologist sent out a tumor sample for BRAF testing (I was negative).  My EOB came back denied as "not medically necessary."  As far as I can gather from talking to the insurance company, the bill is coded as genetic testing, and they only cover genetic testing for a few very obscure conditions (none of which I have!)  Has anybody had any luck appealing in this kind of situation?  What was your doctor's argument that it should be covered?  I have BCBS of GA (yes, despite living in Wisconsin.  Beats me how that works.)

KatyWI

Just keep going!

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Netlla's picture
Replies 19
Last reply 7/11/2011 - 3:14am

Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph.  He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other? I just feel like one of the two are his last option, he is getting very sick, and I just don't want to make the wrong decision on treatment. Please help! 

There is always hope.

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/29/2011 - 7:43pm
Replies by: MichaelFL

Is a miotic rate of 2/10hpf considered high or low?  Just curious because I don't understand this part of pathology report.

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Tim--MRF's picture
Replies 5
Last reply 3/30/2011 - 10:28pm

Genentech has just opened a study for people who have taken the Plexxikon/Roche/Genentech BRAF inhibitor, also known as PLX 4032.  This study is a combination trial using PLX plus a MEK inhibitor.  Some folks from this board have been in the BRAF/MEK trial being run by GSK, and this new trial is similar.  One criteria, though, is that you must have taken the Plexxikon drug and have developed resistance to that drug.

Currently three sites are open:  Dr. Gajewski in Chicago, Dr. Ribas in UCLA, and Dr. Gonzalez in Denver.  Four more sites will open soon.  You can go to this link to find out information about melanoma relevant clinical trials, including this one:  http://www.emergingmed.com/networks/MRF

Tim--MRF

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IF you are offered "wait and see" or HD interferon, you may want to do HD  interferon for 29 days and then get tested for phosphorylated STAT1 (pSTAT1) .

 Stat1 signaling helps differentiates the Naïve T-cells toward the TH1 phenotype needed to attack the Tumor cells.
 
High pSTAT1 in peripheral blood Tcells of Melanoma Patients may correlate with good clinical outcome in the first 29 days of HD IFN therapy.
 

TH1 adaptive immunity, and immunosuppression suggested that TH1 adaptive immunity has a beneficial effect on clinical outcome.

Bets regards,

 

Jimmy B

 

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Melanoma Rates May Be Higher for the Rich

Study Shows Link Between Melanoma and Higher Income Levels

 

http://www.webmd.com/melanoma-skin-cancer/news/20110321/melanoma-rates-may-be-higher-for-the-rich?ecd=wnl_can_032911

http://www.MelanomaResources.info

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Jan in OC's picture
Replies 8
Last reply 3/31/2011 - 2:07pm
Replies by: jhoey, Jan in OC, Anonymous

Hi everyone, 

I need some advice. My husband has had the worst itchy rash since his third infusion of IPI.  His skin turned really red all over (like a bad sunburn) and feels all bumpy (he says it's gator skin).  The doctor gave him a small dose of steroids, but had to increase it after a week and a half of no results. The rash has improved somewhat, but he still itches like crazy.  We are supposed to go for his 4th infusion tomorrow, but the doc has said he may not give it to him due to this reaction.  Also, the spots on his side have all increased in size and new ones have appeared.  He is really worried that the IPI is not working due to the steroids.  Has anyone gone thru this?  Has anyone had to stop IPI before all 4 infusions?  We don't have a lot of options if he fails this. He has already tried Interferon/BRAF.  Has brain, liver, lung, kidney mets.  Any input would be appreciated. 

Thanks,

Jan, wife to Dirk

laughter is the best medicine

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Simmy from Oz -Melbourne's picture
Replies 9
Last reply 4/24/2011 - 12:29am

Hi there everyone,

Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of RO5185426, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (55kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY?? 

oh, also while im here, has anyone experienced nerve damage in their legs and feet after having them blow up with fluid and then drained very quickly?  its like i have constant cramps in my calfs and an aching kind of pins and needles in my feet.  i cant walk properly and its extremely painful.  this all happened before i started taking R05185426, so it cannot be a side effect. 

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

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