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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tomw65's picture
Replies 9
Last reply 3/2/2015 - 11:39am

I was diagnosed with stage 3 melanoma in Jan of 2015. I am a 70 year old married man with 3 children and just received my 1st of 4 immuno therapy infusions with 3 weeks in between treatments.looking to find support any where that I can through this journey. New to this site so just trying to find my way around.

hazel43green

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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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sstech's picture
Replies 4
Last reply 3/9/2015 - 7:27am
Replies by: sstech, Mat, Bubbles

I have been on Opdivo treatment for 2 weeks and am continuing Tafinlar capsules twice a day for 2 more weeks. I know that the Opdivo is very new. I am only the second patient at M D Anderson Melanoma Clinic to be on this treatment. Just curious if there is anyone else on the Opdivo on this site that I can compare notes with. I was diagnosed 5/5/2012 and have been fighting like hell every since. I feel so blessed that the Opdivo was fast tracked through the FDA and is available right when I need it.

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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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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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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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mrsaxde's picture
Replies 5
Last reply 3/18/2015 - 9:26pm
Replies by: mrsaxde, Anonymous, Mat

I finished the treatment course with Yervoy in January. Went back for a post treatment scan a week ago, and the results are encouraging. Several questionable areas, including one on a lung, that were new in November, but weren't "hot" on the PET scan, are unchanged, and still not hot. I do have one area that was mildly hot ("warm" my oncologist called it) with an SUV of 3.03, on my back.

Throughout the treatment I've been dealing with the typical rash, and I've been on prednisone for over two months now. But, all through the time between the infusions, the rash was the only issue.

About a week after the last infusion, a pain developed between the bottom of my ribcage, and my navel. My doctor thgought it was due to the prednisone, and advised me to take Maalox. That seemed to help for a while, but soon it got worse, and became more widespread throughout my abdomen. Maalox no longer provided any relief.

For about a week now, I have been unable to eat much of anything. Almost everything I eat gives me pain, gas, diarrhea, and bloating. I was told to take Immodium for the diarrhea, and to help the pain. It helps, but not completely. It was also recommended that I try the BRAT diet (bananas, rice, applesauce, toast), but not even those are very tolerable, unless taken in very small amounts.

After that long introduction, my questions:

I'm wondering if anyone else who has been given Yervoy has experienced a worsening of side effects after the treatments ended, and if so, how long did it last before they began to subside? Also, does anyone have any recommendations about things I could try to eat? I've lost 10 pounds in just over a week.

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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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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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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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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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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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arthurjedi007's picture
Replies 14
Last reply 3/22/2015 - 8:52pm

Back in 2013 when this all started I changed my diet to more natural non processed stuff. I attribute a lot of my weight loss to that. No matter what I ate though I never have been able to regain weight loss.

However more recent I rapidly in about a week lost 6 or so pounds due to a swallowing issue before the radiation fixed it. Once fixed I still could not gain weight no matter what I ate even pizza. Now I'm losing weight I guess because the radiation has messed up my stomach so diarrea which still is not in control although thought it finally was until again last night and even threw up.

Im almost to my high school weight so I'm trying to find a way to regain my weight loss. I even ate some fairly healthy processed snack foods but no success.

I did find at GNC the old weight gainer I did when I was young and working out. I imagine that would put the weight on me. About 2000 calories per scoop in a glass. But it talks about how it helps create and restore new veins to muscles making them stronger and things. That is all I need is to help the tumors create more veins to make them stronger too. So I'm afraid using it would be worse.

im not very healthy anymore. I can walk a few minutes with a cane.

 So I dunno is there a healthy way I can gain weight? Something full of calories or whatever helps us gain weight?

Artie

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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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Anonymous's picture
Replies 6
Last reply 3/9/2015 - 8:43pm
Replies by: DZnDef, Anonymous, joelcairo, tschmith, Squash

Hi everyone,

A parent of mine was recently diagnosed with metastatic melanoma in Oct of 2014. BRAF positive & currently on Taf/Mek combo, doing very well on both. Tumors have decreased by 20-60% in the brain, liver, lung & adrenal glands over the course of 3.5 months. Super grateful! 

As a family, besides finding a good team of doctors (which we were fortunate to get at Hopkins), we are trying to find other ways to help out. Determined to attack this monster from all possible angles! One thing we've heard many recommend is to change nutrition. We eat very healthy but are def interested in tailoring diet towards a strong, melanoma fighting super-body! 

Along with the taf/mek drugs, and steroids for edema & keppra as preventative for seizures, been giving:

*daily multivitamin

*echinacea

*biotin (for hair growth, post WBR)

In terms of food, we've tried to fuel up on: 

*salmon

*flax & chia seeds

*coconut oil & water

*almond milk (for calcium)

*dark greens (kale, spinach, brussel sprouts)

*turmeric 

*berries & citrus fruits

 

Questions that I'm hoping you all can (please) help with:

(1) Of all the "cancer super foods"  & supplements which have experience shown are *actually* important for adv. melanoma? Any validation for ones I listed above? 

(2) We ran into some trouble with echinacea...high ALT liver # and echinacea may have been to blame...were originally giving this supplement to boost immune system & help prep it for immunotherapy... and now I'm reading mixed opinions on turmeric (some say this interferes with Mek/Taf combo?) and have also read some mixed opinions on calcium. Any seemingly smart choices that actually do more harm than good? 

(3) What foods are taboo & should we absolutely refrain from (heard rumors of red meat, dairy, even carbs?...)

(4) Any other important lifestyle changes? exercise?

(5) Any specific foods/supplements/activities known to help with brain mets/brain recovery?

(6) What have you all taken to prepare for (and power through) immunotherapy? This is the next step for our family so we want to start preparing body now :)

Thanks a million! Any help would be appreciated! This forum is invaluable :) 

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