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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Teochasse's picture
Replies 11
Last reply 3/1/2015 - 3:35pm

I have been very hesitant in posting this since so many people are facing real uphill battles with this nasty disease but I would like to share a message of  hope for anyone who might need it  that it is possible to overcome this cancer against all odds.

I just have  found out that I have been downgraded to  only one PET scan a year since  I have reached the  5 year mark  since  being diagnosed with an extremely rare and aggressive melanoma.This is a major milestone for me since I barely survived a life saving emergency surgery  with a major blood transfusion in 2010 and I was being told basically to get my affairs in order shortly. In my wildest imagination I would not have dreamed   to live to see that day,but here I am NED 5 years on. I don't assume by any means that I am cured,but it still  feels amazing to have lived trough it all,  be still around and get a chance to further  move on  with your life.And yes, I  do get to  experience the Survivors guilt on occassions.

I wish all patients and their caregivers strength,courage and resilience, remember that you have every chance of coming on top of this disease as long as you live and  refuse to stop fighting.

"...life has a funny way of sneaking upon you.

and life has a funny way of helping you out when

you think everything's gone wrong and everything blows up in your face".

 

 

 

Teodora Chasse

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Julie in SoCal's picture
Replies 6
Last reply 3/1/2015 - 2:54pm
Replies by: jbronicki, Julie in SoCal, Anonymous, Mat, Nell

Hi there Friends!

Well, I saw my Rock Star Doc today and he confirmed it; melanoma is back.  It's still small but it's growing (from rice grain to pea size is 3 weeks.

So, the plan is: Full set of scans (PET/CT MRI Brain) next week Wed  to see if it's gone anywhere else.and following that, Keytruda.

My options are to 1) resect the sucker and watch and wait to see if another one pops up, 2) reintroduce Ipi (I had a good response to Ipi the first time, seems reasonable I would have another good response), 3) do PD-1 -Keytruda.  I'm thinking I'll take the more global chance fpr

It's still early in my acceptance of all of this, but I know that this will mean major changes across the board, and It's going to take a while for my hear to catch up.  But it will, and it will be good.

Thanks friends for listening, and caring.

Shalom!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PD-1?

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/1/2015 - 9:47am
Replies by: SABKLYN, arthurjedi007, Anonymous, KMick, yazziemac

My partner went to his family doctor with a highly suspicious lesion on the bridge of his nose.  He never had a lesion there before. It grew quickly over 4-6 weeks before he saw the doctor.  It was ulcerated and bleeding, and black and blue in colour.  The doctor referred him for a biopsy.  The referral was dated for 3 1/2 months later.  We asked for a sooner appointment and couldn't get one.  The biopsy came back as positive for melanoma and a month later the neck lymph nodes came back positive.  

My question is-how long do most people wait to have an initial biopsy?  

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MixtaJones's picture
Replies 7
Last reply 3/1/2015 - 8:59am

Hello everyone,

It has been a very long time since I have visited this site but I figured it was time to swing by and post something that should give people so hope just like many of the post I read.

It has been almost a year since I found a lump under my arm which led to a diagnosis of Early Stage IV Melanoma. I say early because it had spread to all of my lymph nodes in my upper left axilla and they were not able to remove all of the tumors. I did not have distant tumors but it had spread enough to get me to the stage IV classification. Most would say that is a bad thing but it was a blessing that I didn't realize till much later.

I had surgery to remove 22 lymph nodes under my arm followed by radiation which left me with about 7 tumorous lymph nodes in my collar bone area. Because I was diagnosed with Stage IV I was able to go straight on Yervoy and did 4 rounds that finished up on July 11, 2014. My 30 day scan showed that the tumors will still there and slightly smaller. The big surprise was at three months. All of the tumors were GONE!!! No sign of them! I just had my 6 month scan and I am still clear!

Even though I had 22 lymph nodes removed I have had not a single sign of lymphedema. even though I went through radiation and had Yervoy infusions I had very little side affects. Even though a year ago the doctor told my that I had a very tough fight ahead of me I am here alive and well. I know it is relatively early in the game to claim victory but I feel that cancer has lost this battle.

I know not everyone out there will have the results I have had. I know every ones situation is different. But for those of you who have just been Diagnosed and have read all the scary data out there please know that Melanoma is not a death sentence. For those of you that have been fighting this monster for a while, Please don't give up. There is hope and soon cancer will be a thing of the past.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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Kdw2012's picture
Replies 6
Last reply 2/28/2015 - 9:16pm

I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

Kim Wright

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hass71's picture
Replies 3
Last reply 2/28/2015 - 1:02pm
Replies by: arthurjedi007, Anonymous, joelcairo

hello

my wife had her second infusion of Keytruda the anti PD1 by Merck after failing Yervoy, we are expecting to have low response due to the large sizes of the tumors but this is our last hope after doing chemo and radiation for the brain and being negative on BRAF, has any one been on this treatment to share his experience and inform us with the side effects.

I've a question, melanoma in our country is rare but from what i read i can see that most of who get treatment are coping well with it somehow but i see my wife from the day she started treatment with chemotherapy  and getting worse, she lost her hair since that and after that a while did a whole brain radiation and since then her hair didn't grow yet, she's in bed 90 percent of the time in pain and not able to lift her self up, has no appetite to eat and losing weight and the doctors gave me no explanation but that it's because of the disease, is that normal? and what can i do to change this situation?

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/28/2015 - 12:09pm

I have melanoma mets in both lungs and in the bones through out my body ( lots in hips and spine and ribs). I have tried IL2 (no response) Braf Combo ( worked for about 3 months) and IPI ( no response) and now am doing PD1 which seems to not be working as well.... What drugs and treatments are out there and should be on my list to try? Any help in this matter would be so appreciated. I live in the US east coast.

 

Thank You

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FayFighter's picture
Replies 14
Last reply 2/28/2015 - 12:05pm

 

 

Recap;

Husband is 45 y.o. Irish, blue eyes...raised on the jersey shore (lots of sun exposure).

July 2010 Melanocytic Nevi removed from left calf. 

F/U with Derm exams x1/6 mos

June 2013 Nodules appear under skin on left calf. We thought they were vericose veins.

July 2013 Swollen left lymph node in groin area. Biopsy.  Melanoma. BRAF WT.

Slide from 2010 reread by MSKCC as melanoma in situ

August 2013 Lymphadenectomy of left groin.  Just uppers Cloquet node negative.  5/19 nodes positive.

October 2013 Start Yervoy

November 2013 Radiation to Lymph node basin of groin

January 2014 Prednisone needed to control colitis from yervoy. Genomic Studies show NRAS positive.

March 2014 End Prednisone

April 2014  PET/CT Scan shows 3.5 cm lesion in fundus of stomach. Confirmed through biopsy.

May 2014 start PD1/KIR trial

July 2014  too much bleeding from stomach tumor.  Surgery to remove. 

July 2014 Scan shows mets to liver.  numerous.

August 2014 Start MEK/CDK4

October 2014 30% Reduction in liver lesions

November 2014 20% more reduction

December 2014 Stable Lesions.  Heart EF low...need to lower doses

Today Scans...new Liver lesions.  Subcutaneous lesion on back.  Maybe on ribs.

past Friday : 2 small liver mets. Uggggh.  Possible gastric met.  Sub qs popping up

nih wouldn't take him because of colitis.  

 

Options: checking HLA-A2, if positive candidate for IMCgp100 (Monoclonal T Cell Receptor anti-CD3 scFv Fusion Protein) IMMUNOCORE trial at MSKCC.

Options: Speaking with NIH nurse tomorrow about IL2 trial eligibility.

Update:  He is hla a2 match for immunocore   Plan b is abraxane/avastin and gamma for brain  

 

What would you do????? Thoughts on il2?  The immunocore phase 1 showed 13 percent response  

Scrambling here in NJ  

 

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Jewel's picture
Replies 6
Last reply 2/28/2015 - 11:28am
Replies by: Anonymous, Rocco, Jewel

Hi there,

My husband goes for his first set of scans 3/3/15 after completing Ipi/Yervoy. Would love to hear some Long term success stories. Thanks!!

 

Jewel

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Hello

I was hoping to connect with any patients of Dr. Hogg who have Stage 4 melanoma.  My husband, Pete, is a patient of his.

 

Yasmin

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dmk252003's picture
Replies 12
Last reply 2/28/2015 - 8:38am

My mom's oncologist is suggesting she has yervoy treatments for her stage IV cancer.

She has not suggested doing any lab work prior to yervoy treatments. I am concerned since my mom was in the hospital a few weeks ago with irregular heart rate and very high blood pressure.

I would like to hear feedback regarding this. Thank you.

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This article came across my feed and sounded interesting so I looked for the trial.  Melanoma is one of the cancers they are accepting for the trial.  Doesn't say brain mets are a disqualifier and they think it will work on brain mets.  Phase I so you're definitely a "rattie" if you choose this trial but if I was a non-responder to Ipi or PD-1 I'd definitely consider it.  Looks like it's only in Chicago right now.

http://medicalxpress.com/news/2015-02-cancer-drug-pet-dogs-human.html

https://clinicaltrials.gov/ct2/show/NCT02355535?term=pac-1&rank=1

 

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yazziemac's picture
Replies 2
Last reply 2/27/2015 - 10:36am
Replies by: arthurjedi007, Gene_S

Hi everyone

We found out 2 days ago that Pete's melanoma has spread again.  As I posted previously, he had a brain met in November, followed by a craniotomy and gamma knife radiation in Nov/Dec 2014.  He had a PET scan in mid February which showed mets in liver, spine, and muscle.  He's going to start Yervoy on March 11.  We are in Canada and the drug protocols here require that he have one dose of Dacarbazine before he qualifiies for the Yervoy, and must fail the Yervoy before being able to start Opdivo (Nivo).  He had the Dacarbazine yesterday.  I am hoping that he doesn't have serious side effects from the Yervoy and that he responds, but our oncologist said there is only a 25% response rate to Yervoy, which isn't great.   I read the forum postings every day and learn so much from everyone here.

 

Yasmin

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lanasri's picture
Replies 2
Last reply 2/27/2015 - 8:49am
Replies by: lanasri, Becky

My son's wife and a couple of good friends have created a website with his extraordinary landscape photographs to honor his memory by donating all net proceeds to the Melanoma Research Foundation.  

Jeffrey and I visited this forum often and always came away with an abundance of knowledge and support.  The amount of compassion in this forum is truly a gift and one that Jeffrey had supported through the sale of his images.  Here is the link to his website, which really tells Jeff's story.  Clicking on each photograph will provide poignant memories evoked by the image, along with a link to purchase.  

Please pass the link along to everyone you know!  As we are all painfully aware, there is nowhere near enough money going toward Melanoma research.   This is our way of contributing.  

http://www.jeffitandbethere.com/

Thank you for your support!

Stay strong!

Lana

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ashlee12's picture
Replies 3
Last reply 2/27/2015 - 3:17am
Replies by: dmk252003, Anonymous, evleye

Ao cause I've had melanoma am I more likely  to get another type of cancer such as breast or lung?

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