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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awillett1991's picture
Replies 5
Last reply 6/28/2012 - 6:43am

I feel like the last unicorn being a BRAF V600D but I'm posting this in the hopes it can help someone else. I can't be the only one. Despite there being no data available on its efficacy, Dr Sosman believed that Zelboraf would work on my tumor. I started 4-17 and was on and off for the horrid rash, then joint pain. I also suffer through the other many nasty side effects like so many people. I have been steady on 3 pills 2 times a day for 9 weeks or so. In April I had a cardiac met measuring 24x25mm and yesterday It measured 18x16mm. It's working and we are rejoicing for however long it lasts.

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Sharona19's picture
Replies 4
Last reply 6/28/2012 - 12:42am

I will see the Oncologist for the first time since diagnosis, WLE with full thinkness skin graft and SLNB of invasive nodular melanoma of the left foot. So far, margins are clear as are the nodes and I want to as aggressive as possible in keeping any recurrence at bay. Can anyone offer suggestions on questions I should ask about a treatment plan? Are there any Stage II folks receiving treatment? I would appreciate any advice or stories from anyone so I can make the best, most informed decision for my treatment.

Thank you in advance for any help.

Sharon

Everything works out in the end, so if it isn't worked out then it's not the end.

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Angelica Camargo's picture
Replies 8
Last reply 6/27/2012 - 11:15pm

Hello, 

 

My mom was diagnosed with Mucosal Melanoma March 2012. She already had surgery to remove the tumor (stage IV) and completed her Radiation treatment. She never felt sick and has had an amazing energy throughout all the past months. It is sacry to know that cancer can be so silent. To be honest, only reason we know she "had" (hopefully) cancer is because of the biopsy. Her scans came clean and we are so greatful and hopeful that she is truly clean. But of course we know that this melanoma cells are very sneaky and they can be small and hiding around the body. Our oncologyst 100% suggested "INTERFERON". We are not scare of the side effects but I would love to hear from people that has had or have this same type of cancer. It is so rare that it is so frustrating to hear from the Doctors "We just don't know"

 

Greatfully, 

 

Angelica (Gely's daughter)

BTW: Bastyr Clinc (Naturopathic University) has helped us so much make my mom's body so strong and healthy. I 100% recomment to complement any treatments with Viatmins, supplements and an extremly healthy food routine. 

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Tim--MRF's picture
Replies 3
Last reply 6/27/2012 - 10:11pm

The news reported a few days ago that the the review panel for Britain's National Health Service have said that Zelboraf is too expensive and the long-term benefits are unclear, so they recommend the NHS not cover the drug.  This is devastating news for melanoma patients in Britain, and I believe we need to help reverse this recommendation.  My colleagues in the UK and Europe have asked for our help, and here is what they recommend:

If you are a melanoma patient or the family/friend of a patient in the UK, please submit a comment on this issue.

If you have taken Zelboraf--particularly if you are a long-term responder--please submit a comment even if you don't live in the UK.  Your story can have an impact.  

You can submit comments here:  http://guidance.nice.org.uk/TA/Wave27/5/Consultation/DraftGuidance

My personal feeling on this is driven by a few widely-reported facts:

--clinicians have a biomarker that predicts response

--response rates are high among those patients receiving the drug

--while the median duration of response is 6 to 7 months, those months tend to be characterized by high quality of life

--some patients have much longer responses

This seems like a strong case for approving the drug in the NHS.  

Tim--MRF

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bikerwife's picture
Replies 6
Last reply 6/27/2012 - 8:46pm

Lynn started taking his pills Monday not sure what to expect hoping for the best. I do know thems some big pills. Lynn is trying to stay out of the sun and I did go buy him a uv shirt to ride in not that we get to ride a lot but hoping he gets to feeling better soon.

He's lost so much weight really hoping he can gain some of it back.

Lynn has a lot of little tumors on his body a lot of them disappeared after ippi. Will zelobraf make them disappear.

Anyone that can give me some ideas of what to expect or things I can do to help him. It would be greatly appreciated. As allways love and pray s for you and your families.

Thanks Belva

What God leads u to he will. Lead you through

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Fighting Mama's picture
Replies 11
Last reply 6/27/2012 - 6:34pm

The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently...I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn. 

What has worked or helped for other folks on Zel? My hubby had a special UV protective tint applied to our vehicle windows, I have purchased some UVP clothing...but I refuse to stay inside and not enjoy summer time with my family!

I would love to hear from others going through this.

Best,

Amy

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http://news.vanderbilt.edu/2012/03/melanoma-drugsecondary-tumors/

In 2011, the FDA approved the drug vemurafenib for the treatment of metastatic melanoma in patients whose tumors harbor the BRAF 600E mutation. While the drug, known commercially as Zelboraf, has nearly doubled survival among patients who respond to treatment, a significant number of those patients develop secondary skin cancers – most commonly squamous-cell carcinomas and keratoacanthomas.

To determine the cause of these secondary cancers, the investigators performed a molecular analysis of patient lesions.

Most of the patients (78 percent) had clinical signs of chronically sun-damaged skin and 17 percent had a history of squamous-cell carcinomas or keratoacanthomas.

Researchers obtained 21 samples of cutaneous squamous-cell carcinoma or keratoacanthoma from 11 patients with metastatic melanoma, and a validation set of 14 samples from 12 patients who had been treated with vemurafenib.

The investigators found that about 60 percent of the tumor specimens harbored mutations in the RAS gene, the most prevalent being HRAS Q61L.

The researchers then used a mouse model to induce HRAS Q61L-mediated skin cancers and found that while vemurafenib did not initiate or promote cancer development, it accelerated growth of existing lesions that harbored HRAS mutations.

Growth of these tumors was blocked when a drug that inhibits the MEK molecular pathway was used.

“This is a prime example of bedside-to-bench research where observations by oncologists can be rapidly studied and elucidated by close collaboration with dermatologists and basic scientists,” said Puzanov.

“This will inform further clinical development of next-in-line BRAF inhibitors, as well as BRAF-targeted drug combinations.”

The authors note that studies in mice suggest these secondary tumors develop from a multi-step process driven by exposure to a chemical carcinogen or ultraviolet light, followed by a tumor-promoting event. This event is an oncogenic driver mutation in RAS, preferentially in HRAS.

“Our study suggests that combining the BRAF inhibitor vemurafenib with a MEK inhibitor drug may be useful in patients who harbor the RAS mutation,” said Puzanov.

Melanoma patients who are being treated with vemurafenib are now monitored closely for the potential development of these secondary skin cancers, which tend to appear soon after treatment begins.

The secondary cancers can be safely removed surgically and patients do not have to stop vemurafenib therapy for their metastatic melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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Ali's picture
Replies 15
Last reply 6/27/2012 - 3:43pm

Just wanted to update everyone.  I am waiting to be discharged after my 6th and final week of IL-2.  My fist scans looked really good, shrinkage and stable disease.  The second scans showed new subcutaneous mets (I already knew that because I could feel them) but the tumor in the liver and bones looked stable still.  So we went ahead with the last cycle.  I got 9 bags in the fist week and 8 for the second.  I can still feel 2 subqs which have shrunk this week.  The Dr. guesses will have to go with a plan b, that I most likely will not be a complete responder (next scans in July).  But today I am grateful that the IL-2 has helped (I have felt 6 tumors disappear over the last 4 month), and I hope it will keep helping, and maybe enhance the effects of a next treatment.

This week we have found what may be vitiligo on my belly, and the Dr. said some moles on my back look like they have a halo of white around them.  Those are good signs that my body is specifically attacking my melanocytes. 

I feel so blessed, we were so well taken care of in and out of the hospital. 

If anyone has questions about the IL2 experience you can message me and I will be happy to answer any questions. 

I pray for all fellow warriors that we can beat this thing!!!!  God bless.

Ali

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Anonymous's picture
Replies 24
Last reply 6/26/2012 - 10:56pm
Replies by: Cindy33, PlantLady, natasha, Anonymous, Harry in Fair Oaks

I am beside myself.  My second opinion on slides has resulted in a worse diagnosis of malignant melenoma.  This was an old mole that was biospied and atypcal but only a little and grew back.  What does this mean?  Does this mean I have to change the way I live my life?  Does everyone have at least one melenoma but not know it? How common is this?  It was a noninvasive melanoma confined to my first layer of skin.  I am leaving on holiday for the beach next week.  Was dreaming of sun and sand.  I am now noticing odd pains in my head and joints and scared it has spread.

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yoopergirl's picture
Replies 8
Last reply 6/26/2012 - 10:32pm

Tomorrow morning at 10:30 will have a punch biopsy on several of my melanoma's, then radiology at 1:45 for an ultra sound and then at 3 pm start the draining of the fluid around my lung and that will take until 5 pm. Hopefully that will help with my shortness of breath. One week after that will find out when I start my clinical trial. Getting anxious now.

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MeNDave's picture
Replies 12
Last reply 6/26/2012 - 12:30am

Just wanted to post our good news, first time in four years of battling the beast.  Dave's recent decline took IPI off the table, as his LDH was over 8000 (yes, that's 8k, not 800).  The cancer was spreading quickly, and his onc told us that we may have to face the fact that we couldn't keep ahead of it.  The day before he was released from the hospital, Dave did one round of carbo/taxol.  After being bed ridden for 5 days, he did a complete turn around - even going back to work.  He went in for his bloodwork yesterday and his LDH has dropped to 2390 - still high, but much better.  The one met in his chest that could be felt has shrunk to half it's size.  His oncologist was thrilled with the results, and we were over the moon!  FINALLY.... something is working.  Plan now is to do one more round next week, then scan on June 1.  If all goes well, he will start IPI in June, as we know that this is only a "bridge" treatment.  His energy level has increased, and we are decreasing the methadone, steroids, and gabapatin.

I can't tell you how happy we are! 

All my best to all the mel warriors - don't ever, ever give up!

Maria

Don't ever, EVER, give up!

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Erinmay22's picture
Replies 7
Last reply 6/26/2012 - 12:06am

Hey folks - I'm just curious how long it took before you started seeing other skin growths from Zelboraf?  I've started to notice a lot of bumps on my skin.  You can kind of see them on my hand here (in the middle top towards the knuckles).  They are fairly flat and clear.  Just curious if other folks have seen the same thing.  I did notice some of these though before I started on Z.  

I've also noticed since I had my rash really bad last week what appear to be more red/cherry marks (maybe Cheery angioma's?).  I'll see my oncologist Friday and Derm the following week so I'll ask them about these spots then.  Was just wondering what folks have experienced.  I am now on a reduced dose.   Feeling pretty good except for the darn joint pain.  

Have a great weekend everyone!

Erin

 

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Snickers60's picture
Replies 2
Last reply 6/25/2012 - 4:21pm
Replies by: Snickers60, Anonymous

Wayne and I have found www.houstongroundangels.org and they are FABULOUS !

It only cost a "THANK YOU" -  and they are precious people.    We used them the first time last trip and they were

very lovely, kind and TIMELY people.   Oh for Joy, as they celebrated with us over our good news.   (and they don't wear perfume,

colgone - big for us with the treatment and my chemical allergies)

The lady who picked us up had family who has had Melanoma.  Her husband had had it...MOLE  - and his sister had died of it,

so when we got the news, that Wayne was "NED" -  I called her.   I said, I know I'm not suppose to use your personal number but I had to tell you this in lieu

of your family's history !   She was soooo grateful I did and so happy for us, and said she would look for us on the board for the next time

we came to Houston to be our GROUND ANGEL.     She was a hoot and we laughed the entire trip........crying laughing that is.  What

great endorphins.   We really hit it off. 

We were paying around $70-80 for a round trip to MDA from Houston Hobby by cab - shuttle will cost you that too, and they are soooo rough

it will undo your spine.   Now it only cost a THANK YOU !    This amount really adds up when you know you will be going there once a

month for the rest of your life !

I hope and pray this blesses and helps someone.

Nancy (Devoted wife of #3 time Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Gene_S's picture
Replies 4
Last reply 6/25/2012 - 2:50pm

Hello,

Many of you know that I am part of the Vervoy clinical trail with Vervoy (Ippi) with GM-CSF or just Vervoy and no GM-CSF. Mine is with the GM-CSF. Today was my first maintenance follow up treatment ( my fifth dosage of ippi ) ,as this is part of the trial. I am on the high dose version 10 mg/kg.  Any way back to the Subject.  My nurse today informed me that this trial closed yesterday (July 28,2011) as BMS has enough patients for their study trial. My melanoma tumors are regressing very well with the ippi and the GM-CSF treatments.

Best Wishes to all fighting this beast!

Gene, Stage 4

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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On Sunday, August 12th, lace up your sneakers and join the Melanoma Foundation of New England at the starting line for the 2012 New Balance Falmouth Road Race. You can help spread awareness and educate others in the fight against melanoma.

Runners have been raising funds and awareness for the Melanoma Foundation of New England since 2004. Running for Cover, the Foundation's running team, has been running Falmouth for the past four years. We aim to raise more than $15,000 this year! Runner will be required to raise a minimum of $1,000 to help us reach our goal.

If you, or someone you know, is interested in joining Running for Cover, please visit our website, apply online, or email jshea@mfne.org.

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