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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gtown's picture
Replies 8
Last reply 5/19/2011 - 5:50pm

Hey what's up? I just had a sentinel lymph node biopsy today as well as the removal of the nodular melanoma tumor on my shoulder ( surgeon said it was approx 1.9 mm, non ulcerated, with a mitotic rate of 7) My question is; he said he removed 3 or 4 lymph nodes which really concerned me, isn't just one lymph node usually removed during this process? I asked him this after the operation and he stated that they were so close ion proximity he felt better off taking the 3 out, is this something to be concerned about? The melanoma is on my shoulder and he took the three from under the armpit. Any insight would be greatly appreciated.

P.S. He stated he saw nothing out of the ordinary while doing said procedure. No swollen or hard noides etc. 

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jag's picture
Replies 5
Last reply 5/19/2011 - 1:47pm

Having been out of the treatment loop, unfortunately, I have lost track of all of the different trials out there, so many letters, so many mutation types, so many histology tests so many drug companies and so on.  I would like to start to organize the different medications (at least get started) so we can see what is working for who.

 GSK 113929

is the number of a trial who "patient" I won't say it yet, is responding very well to.  The drug is made by Glaxo Smith Kline, it is for people with BRAF mutations who also have brain mets.

This is the actual medication name: GSK2118436

The patient has responded amazingly well despite a severe recent relapse.  For now consider this information to be similar to a statistic in a lab report.  

The patient will give the patients own account with much more personality and entertaining details.

Just putting this one out there as it is helpful if you have brain mets, and are not responding.

Here is the link:

 http://www.clinicaltrials.gov/ct2/show/study/NCT01266967?term=GSK+113929&rank=1&show_locs=Y#locn

Information that would be helpful:(just copy and paste this form and fill in your treatments)

Drug name/clinical trial letters/manufacturer

Trial Name

Drug Company

Response duration vs non Response 

Previous Treatments

Mutation status.

Hopefully we can organize this information as to which companies are producing a better product.  Back when Yervoy was being investigated, it was originally a biopharmaceutical startup made by a company named Medarex.  Pfizer was making a similar product at the same time.  For some reason, The Medarex one was better and zipped right through the clinical trials, it went from the names MDX 010 to Ipilimumab to finally Yervoy.  Pfizers was simply discontinued.  

Thank you and I hope this is a helpful start by patients for patients.

 

.

 

 

Insert Generic Inspirational Motto Here

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I've not posted for a long time, but I've been on MPIP on and off since 1997.  I was stage IV NED for 10+ years, until diagnosed with multiple bone mets and sub-q 3 months ago (boo hoo - but that's life).

I went to the Angeles Clinic to see Dr. O'day, and after positive typing for BRAF, I was randomized to the BRAF/MEK combo trial (with the highest level of MEK).  I have been taking the drugs since last Thursday, and so far zero side effects.  I'm just wondering, for those of you who are on BRAF and/or MEK, when did any side effects begin?  We're going on a cruise next month, and I certainly don't want any nasty stuff happening then.

Thanks in advance for your responses,

Harry

Too ugly to die!

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Jan in OC's picture
Replies 8
Last reply 5/21/2011 - 9:12pm
Replies by: Jan in OC, dgkendall, lhaley, JuleFL, Anonymous

I just came across this little video about melanoma that my next door neighbor posted on her facebook. She has watched what we have gone through for the last 2 years and has encouraged her whole family to get checked.  She thanks me everytime I see her lol!   I am sharing it with everyone I know.  

Feel free to pass it on.  It made me laugh and cry.

 

www.thatvideosite.com

 

Jan, wife to Dirk, Stage IV (now trying E-7080)

 

laughter is the best medicine

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Hi All,

 My husband just had his 6 week scan after starting on PLX4032, the Roche Braf inhibitor. He had to be taken off for a 4 days during the last 2 weeks due to side effects, but had been back on the drugs at a reduced dose for the last week before the scans.

Apparently they show a slight progression, the doctor said he's calling it "stable" for now, and wants to check again in 3 weeks.

Jay had been on a MEK inhibitor previously and the docs were worried there might be some drug resistance to the Braf inhibitor becasue of that.

Did anyone else have a similar "stable" scan after taking the drug for 6 weeks and if so, what happened next?

We were so hoping we'd get at least 6 months out of this drug before moving on to the next.

 

thanks,

Emily

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WTL's picture
Replies 23
Last reply 3/16/2012 - 6:52pm

Hi everybody - "A small hypermetabolic left supraclavicular focus without a definite CT correlate is of unknown etiology." This was the only abnormality on PET/CT scan for newly diagnosed melanoma on right calf. No suspicious enlarged nodes identified in the neck. Biopsy: superficial spreading, Breslow's 0.55, Clark's level 3, mitochic index 2/sq.mm, staged at IIA.

My dermatologist told me nothing - he passed me off to his PA, who seemed somewhat knowledgeable, removed a basal cell carcinoma but left the melanoma (a lot of it was removed in biopsy - don't know the method used). She said that it wasn't nodular but had a small nodule raised above the skin, and because of the Clark's level I would need to be staged (again?) - from web searching I got the impression I could also be at stage IB, and that Clark's level is not that great a tool.

Do I need a biopsy of that node in my neck? I read that leg melanomas usually spread to the nodes in the groin. So what are the chances that the neck node is melanoma?

What concerns me is that the PET/CT did not pick up my prostate cancer, which I know is small and has always been contained in the gland (the PSA is only 1.17 because there's not much of the gland left after two HIFU treatments, soon to be a third). So I have to wonder how accurate the scan is if it didn't see the PC (but it did see my plantar fasciitis!). Could the PC be the cause of that hypermetabolic node? What are the chances the node means no metastasis?

I seem to be on my own (had to find and set up the PET/CT scan), trying to find an oncologist, get in to County-USC (up to 2+ months wait), or City of Hope or UCLA. The PA said they don't deal with melanomas that can't be easily removed in the office, nor did they give me a referral to an oncologist ("we don't know any").

And I have no insurance, 6 months shy of Medicare. I'm up at 4 am worrying - the prostate cancer was scary enough (and has taken a lot of our savings), melanoma is scarier. Sorry to go on so long - trying to give as much info as possible, and have no one to ask, so all I do is search the web and make phone calls trying to get consultation and treatment.

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arnie and sherry's picture
Replies 4
Last reply 5/28/2011 - 6:05pm

My husband arnie, was diagnosed in2008 it started with a mole on his back, 9 months latter it moved to his neck 21 lymph nodes removed started intrerferon for1 year very hard on him .13months later it spread to his chest  he had surgery to remove it . it has been about 11 months and he has been doing fine he just had a cat scan of chest abdoium pelvic and neck . does anyone know what we should try next.

keep on trucking

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shellebrownies's picture
Replies 13
Last reply 5/18/2011 - 8:33pm

And the hits just keep on comin'....

After letting the doctor know that  Don has started having lower back pain, they did a new MRI of the area. Not only has the cancer spread in the bones of his spine, it has now affected the sheath surrounding the spinal cord in at least one place. This news is added to my getting the copy of Don's CT scan from the 6th that said he has "innumerable" small lesions in his liver. (These results were never told to us, thank you very much, I had to retrieve from the Patient Gateway website...)

Explain to me again why the the heck he hasn't received treatment yet?

Well *now* they want to treat him...with steroids and radiation to shrink growth in this area (which will then make him inelegible for his trials). We have decided to hold off a couple days while we get our second opinion from Dr. Lawrence on Thursday.

Anyway, thanks for letting me vent. I could use some encouraging words tonight...this dang disease is spreading so fast!

 

Michelle, wife of Don, Stage IV

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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eaca's picture
Replies 11
Last reply 5/18/2011 - 4:36pm

My dermatologist removed a mole from the center of my back last week because it had grown and started to bleed.  She called me two days later with the news that the pathology report has shown melanoma.  She has referred me to the Melanoma Center here in Houston and I have my first consultation scheduled for Friday (5/20/11).  What questions should I be sure to ask the doctor at this appointment?  Thanks for any advice and help from those more experienced!

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Lauri England's picture
Replies 6
Last reply 5/25/2011 - 2:13pm

Every since I was diagnosed with Stage IIIC melanoma on my right shoulder June 2, 2010 I do monthly checks on myself.  3 weeks ago I felt a small lump in my arm pit under my left arm. It was actually so small at the time that my husband could not even feel it.  I am 7 1/2 months into Interferon treatments.  I waited to see if the lump changed at all or went away because I know Lymph Nodes swell sometimes do to infection or sickness.  Last Friday I noticed it had gotten a little bigger, about the size of a marble and can easily be felt now.  It is not painful and it feels kind of soft.  I saw my Onc Doctor yesterday and he appeared to be pretty concerned and wants a biopsy as soon as possible.  I now have an appointment for consultation next Monday with surgeon.  I am glad it was so soon.  They are not sure if they will do the biopsy that day or schedule surgery.  I am trying very hard to stay positive as this could be nothing.  Has anyone else had a similar experience?

Don't sweat the small stuff. There are bigger fish to fry!

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PaulB's picture
Replies 9
Last reply 3/29/2013 - 9:29am

Hi Everyone!

I'm not sure if anybody remember me......

Its been long time that I haven't visit this site........Since I was Diagnosed on October 2002 Stage 3b Level 3 .

I have been doing very well for close to 9 yrs now and still cancer free!

I can't beleive that I have survived for almost 9 yrs and looking forward to 10 years anniversary next year as melanoma survivor.

Now, Everybody ...keep your faith in positive way, and not looking back in the past.

My family kept me going forward in positive life, that how I survived all those years!

GOD bless you all!

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TracyLee's picture
Replies 14
Last reply 5/21/2011 - 11:06am

I just found out today I'm now stage IV, with small lesions in my lungs.

it has not been a year since I was diagnosed, and I've had 5 surgeries.

I'm now referred to Johns Hopkins for ipi. I can NEVER go to the doctor and stay ahead of the curve. I always get worse news than I expected.

My four kids and husband are all taking it badly, and so am I. 

Friends from church came over when they heard, and I am so grateful. It's prayer or get drunk, and prayer is a better example to the kids! :)

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Lisa13's picture
Replies 7
Last reply 5/17/2011 - 8:07pm

I'm close to 3 months out from my WLE and lymph node dissection (groin). I've had a very small amount of lymphedema in  my leg but nothing major.  As a woman, I've also had some swelling in my vaginal area (sorry boys) :).  I've noticed a long, hard bump in between my scar (groin) and pelvic region.  I know it can be a number of things, but I wanted to know if anyone could suggest what it could be based on their own experiences.  There is no pain, it just feels hard amd long, not like a cyst and it's not on my scar. I'm not sure if I should make an appointment for my surginal oncologist to check it out.  I'm thinking because there is fluid there, it's created something abnormal.

 

Thanks,

Lisa

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Lisa13's picture
Replies 2
Last reply 5/16/2011 - 6:35pm
Replies by: Lisa13, Carol Taylor

on

Many impossible things have been accomplished for those who refuse to quit

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To the board:

Its been a few months since I posted, but wanted to ask a question to those that have had intestinal surgery. In February, I had a golf ball sized tumor removed from my small intestine via a partial bowel resection. Recovery was pretty quick (3 days in hospital) and all was fine until 4 weeks ago, when I was unable to get to sleep on a sunday night due to extreme abdominal pain. Wound up spending 3 days, 2 nights in hospital as it ultimately corrected itself without any treatment. CT revealed it was a partial obstruction.

Then, last week, same thing happened. Admitted to Sloan Kettering on Tuesday. CT revealed partial bowel obstruction plus, unfortunately, a small tumor on the liver. Obviously the news about the liver was most heartbreaking, but the pain from obstruction was most important to fix immediately.

My question, has anyone else had to deal with multiple small bowel obstructions? How did they resolve and did u need surgery again to fix? If so, have u had any problems since your corrective surgery?

I had an NG tube for 2 days last week, was uncomfortable, but it worked wonders. I was released on Saturday night, felt great yesterday and this morning, and then about 4 hours ago, have started to have similar pain/cramps. Really would not like to go back to hospital, especially as my doc basically said if I come back, I'm going in for surgery. Does anyone have advice on how these can be avoided? Diet perhaps?

Also, as far as liver goes, mine appears to be resectable, its small at 0.6cm near the base of the liver. The radiologist missed it the first time in fact. The docs at sloan recommended IPI (Yervoy) as I haven't done anything since I was stage 3 and did interferon. Any thoughts on getting it resected? Docs advised against it for now. They did mention possibly post treatment, I get it ablated. 

Any and all advice welcome.

Kind regards

Wetterhorn, Stage IV, Liver Met

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