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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killmel's picture
Replies 1
Last reply 1/4/2011 - 8:08pm
Replies by: Linda J

Hi Linda,

 

I read in a post that you going tomorrow to sign consent forms to start the trial. What trial are you doing? I read that you were interested in the BRAF/MEK combo trialis is that the trial you are doing??

I would like to get info on this BRAF/MEK combo trial. I have been looking for info on this trial. Would you know the clinical trial.gov NCT clinical trial number.

Linda, I wish you lots of success with your new trial. If you have any info on the Braf/MEK combo trial (like criteria requirements and exclusions) , I would sincerely appreciate you shaing the info. Perhaps the doctor/study nurse at PMHH might be able to tell you. Thanks

Stay Well,

Wendy

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MarioR1's picture
Replies 4
Last reply 1/4/2011 - 8:01pm

Does anyone know if they still make the black "Fight The Beast" bracelets. Mine of 6 yrs finally broke.

Thanks, mario

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mike_nj's picture
Replies 10
Last reply 1/4/2011 - 10:41am

Hello all

I have been checking the board frequently but rarely see anyone around to chat with lately.

Anyway, I hope that this year is the year that the researchers connect all the dots and we can start talking about either curing melanoma or downgrading it to a chronic disease, but no longer life threatening for most people.

I still work and I am involved in building a cat litter plant so my 3 cats should be happy.  My family, threw me a surprise 60 b-day party back in November.

I am due for another checkup in May as I am now 6 plus years out from my stage 3B diagnosis.  Still have Lymphedema in my right arm and some external radiation scars but in pretty good shape, other than my knees (arthritis).  I still take an assortment of supplements as well

If I had to get this cancer, I am honored to among all of you, those we lost and mourn , those fighting with active disease, those like me in a holding state, the newly daignosed, and all the caregivers and doctors and nurses that are on our side.

Happy New Year

 

Mike from NJ

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Would you mind emailing me at lisarath@gmail.com?

Thanks

Lisa - Aust

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lovingwifedeb's picture
Replies 15
Last reply 1/3/2011 - 10:06pm

I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

Father's Day - Stage 3B

July 22nd - Surgery

Choice - No treatment/Nutrition Based

5 Months - Happy New Years - New Tests - Stage 4 - Brain Cancer

No other "hot spots" in body found

 

My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis... now what?

Appointment with the neurologist on Monday.

Absolutely Terrified.

 

Deb

lovingwife to Bob, stage 4

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Anonymous's picture
Replies 28
Last reply 1/3/2011 - 8:33pm

How many people here with melanoma also  have red hair, blue eyes and have fair complexion? Just curious about how many actually fit the stereotype for high risk of melanoma. I have read it has something to do the with melatonin. Thank you

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Lori C's picture
Replies 9
Last reply 1/3/2011 - 8:01pm

I am sorry to pass along the news that Bill58 (stage IV recently found to have brain mets) died today.  Bill was very supportive of me during my caregiving experience - he is from my hometown (we went to high school together, as it turned out) and came to Will's memorial service.  He shared a doctor with Will and recently switched from Dr. Jon Richards/Sigrun Hallmeyer (will's initial docs) to Dr. Howard Kaufman in Chicago.  I was very happy he had chosen Dr. Kaufman and was so hopeful for him.  Bill often posted on here but I was not sure if his family would have access to notify the board....

He leaves a wife and three children. 

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Noramott's picture
Replies 1
Last reply 1/3/2011 - 7:53pm
Replies by: Janner

My friend had his melanoma behind his ear and was cut quite a ways  down on his neck. 

 

The report says:

Pre Operative Diagonsis:  238.2: Preop Dx Atypical Melanocytic Proliferation/Melanoma Accession

Diagnosis:

Archival material and the pathology report have been reviewed.  Some sections exhibited residual proliferating melanocytes with atypia however these are adjacent to the previous biopsy sight and demonstrate no evidence of dermal involvement and the margins are widely clear.

Gross examination:

The specimen is labeled "R neck lesion: one suture superior, two sutures inferior" and consists of a teardrop-shpaed tan skin, 5.5X3.7 cm, with attached subcutis tissue, up to .5 cm in thickness.  A single suture is present along one edge designating the superior margin with a double along with opposite margin marking the inferior margin.  The single suture will be assigned as the 12 o'clock position and the double suture the 6 o'clock position using clock face designation.  

 

Then he had other places removed and this is what it says:

1) Skin, Mid Superior Back:

Pigmented Compound Lentiginous Nevus with Archituectureal Atypia, Cytologic Pielmorphism and focally involved margins.

  2) Skin, mid inferior back

Pigmented compund nevus with focally involved margins.

 

So if anyone can help tell him what this means, that would be wonderful.  There ought to be a section at the end that says, "all these big words means blah blah blah."  Thanks for any help.

 

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Linda J's picture
Replies 1
Last reply 1/3/2011 - 7:32pm
Replies by: Anonymous

I am considering doing the braf/mek combo phase I trial at PMH in Toronto. Are people seeing good results with these drugs?

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Wendi Lynn's picture
Replies 9
Last reply 1/3/2011 - 2:48pm

So, I know there were quite a few folks that started the one month HD Interferon around the same time as me.  Yesterday was my last HD and I'm SO GLAD it's over.  Lots of side effects, more sleep than I've had in months but I'm done!  I'm hoping that everyone else came through ok!  I also wanted to say thanks for all the advice and nice words.  Every little bit helps!

On to the next challenge!!!

Wendi

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Springbok's picture
Replies 15
Last reply 1/2/2011 - 9:55pm

I have been coming down from a month long high after the results of my SNB were NED. I had lost 10lbs just from the stress of waiting for results. The pathologist didn't seem to be in any hurry. And I was also not very hopeful. The primary tumour was ugly - Breslow 2.6mm, Clarke's level iv, ulcerated with Mitosis of 6/mm2.

Now in the cold light of dawn, I am thinking things over and would ask for some advice. Firstly, I read that the SNB is only 90 to95% accurate. What about the missing 10%?  Did they get the wrong node? Should one do the SNB again? Or does the cancer spread directly into the blood, and if so , can blood tests detect it?

The cancer surgeon sent me away, and told me to come back in 6 months for a check-up. Seems pretty casual to me, considering the speed with which this disease works. Also,  here in Calgary, with a public health system, they will not authorize any scanning unless there is good cause, and apparently there is not at the moment.

My buddies are urging me to go down to one of the good cancer hospitals in the US. But what more can they do for me?  All this would be on my own nickle, and I understand that PET scanning is very expensive. Still, if it furthers the cause, I will byte the bullet and pay for it.

Any suggestions on the next step?

Springbok

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nicoli's picture
Replies 2
Last reply 1/2/2011 - 10:01am
Replies by: Rocklove, JuleFL

Dear Melanoma (NOT!),

Well, 2010 has come and gone and only partially because of you, mel, it was without a doubt the worst year of my life. We had quite a fight. You did your best, even returning after I thought I had kicked your a**.  

But.....I'M STILL HERE!  And I expect to be here this same time next year, thanks to my God, my good doctors, and my treatment plan.

But will you still be here next year, mel?  Maybe not, maybe they will find a cure in 2011. Maybe 2011 is your final year, mel. Maybe. You BETTER be scared, mel, cuz nobody likes you mel, nobody is praying for you, nobody is working and fighting to find a way to keep YOU alive.

Maybe you better run home crying to your mama, mel, maybe you better go home and get your affairs in order, mel !

So here we go again, just you and me, mel. Ready?  CUZ I AM. Round One of 2011: Biochemo starts next Thursday. Let's see how you like it, mel.  I know I'm gonna LOVE it. Can't wait! Let's go.

Most sincerely,

Nicki, stage 3b

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Seems to have a lot of good stuff in it.

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Not all SPF 50 sunscreens are equal.

Do the best you can.

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Kim K's picture
Replies 10
Last reply 1/1/2011 - 3:23pm

Hi all,

As seems to be a problem in the field of oncology, what do do with your patient after they are no longer receiving treatment.  It has been 5 months since my last scans showed I am NED (hooray!) yet my oncology team still hadn't come up with any kind of follow up schedule for me.  Only after I flew to Honolulu for some face time (my primary onc. had a sudden emergency so I saw his associate) did I get any feedback.  My oncs. almost want to have my primary doc who knows nothing of melanoma to follow me, since I am no longer in active treatment and NED.  I told them NO because my follow up should include PET.  Queen's Hospital in Honolulu has the only PET/CT machine in the entire state.  Why would I want anyone here in Hilo to follow me when they don't have the equipment (or expertise) to do so?

Question - for those of you NED and not in a clinical trial, what are your follow-up scans and when.

I know there is no consensus on the issue, but for me, I do not buy into lets wait until you have symptoms.  By then you tend to be toast.  I have creepy crawly smoldering disease that showed up in only 2 spots after 7 years at stage IIA.  IL-2 cleared my final lesion this summer.  I DID get the associate (who saw me while in the ICU for IL-2) to agree that there needed to be some sort of scanning follow-up since I have no symptoms or abnormalities that can be detected with blood work or on a physical.

The doctor ordered a chest CT and brain MRI with a PET.  My concern with that plan was detecting any abdominal disease seeing as mel also likes the liver and small intestine.  He said he didn't think it was necessary since my mel came back to my lung and chest wall.  I disagree and want to make sure it doesn't pop back up elsewhere and we miss it.  I am sure the PET will catch it but there are also false negatives with PET that CT can detect.  Still no word as to a routine scanning schedule, let alone the kind of scans and locations to be scanned.

My gut tells me to do scans every 6 months for 2 years, and then if nothing, annually.  They should include brain MRI, PET / CT & chest / abdomen / pelvis CT.  I know if mel is planning on returning it will most likely do so within the next 2 years.  That being said, since I seem to have the slow moving mellower form of mel, I think it is OK to do scans every 6-12 months unless symptoms arise.  I just can't get anyone to commit to a game plan and I am the one pushing everything.

My goal is to catch any recurrence early so I can buy as much time for treatment or a trial when it may still actually make a difference.  I don't want to wait until my tumor burden makes itself painfully clear.  In the meantime, I deeply feel I will be one of the few that will never hear from mel again.  I hope I am right on that.  If not, I want to be as proactive as possible yet avoid necessary and costly scans.

Thoughts anyone?

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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