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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MattF's picture
Replies 1
Last reply 10/18/2013 - 12:44pm
Replies by: UrsulaZ

Ok I am set up for radiation which will take me into early Dec.

I meet with a different  medical oncologist tomorrow as I went and saw mine today and he had no treatment planned...he does not use interferon and has no trials. He called over to UCLA and they will see me tomorrow to discuss trails and interferon and how it may work with radiation.

So my question is?

Radiation y or n?

Interferon? 

Yervoy Trial?

Zelboraf Trial?

Trial with Radiation?

It is all so new to me.

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bethwkiss's picture
Replies 4
Last reply 10/18/2013 - 11:03am
Replies by: bethwkiss, MattF, sbrooks90

I am new to this site was told today when I went after follow up from sugery that my melanoma is stage 2b and that its the agressive kind my brother Joe Wray passed away from same kind in 2005 and i'm lost on a few matters like is there treatment that I should look at to help it stay away and since it runs in the family should I push for perventive treatments no matter what I have talked to many who say just go to doctor every 3 months and watch for new groth but with my brothers it was so fast he was gone with in 2 years but his was stage 3 when found any input any one could give that would be helpful would be wonderful .

 

 

                                                                                  Thank you in advance 

 

                                                                                                                         lisa

 

Lisa Newcomb  

Never give up !!!!!!

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Hello my name is Barbara Wagner and I live in Mansfield Texas. I use to come on here all the time for support but as time passes we channel into new things. I was first DX in June 2009 invasive in mt right breast in situ my breast surgeon told me I was only the ND person she knew of having it ulcerated in breast in situ. It has been a long journey with many up and downs and depression. I started not eating healthy and not taking care of my self until first I decided to make changes.I have 3 kids and two in high school now all I prayed for was to live long enough to see my kids graduate now I pray for a long life and making a difference.

I do all the local walks,near and far which 4 years ago there was no mention of Melanoma the cause has came a long way and I;m very passionate about spreading awareness and making changes before now I was like what can I do? Well we all can make changes in our own community,schools, city boards I mean everything we have it in us to make a change to be heard and people hear our voices, My daughter has cheered her whole life and competively she was required at a very young age to tan they tell these girls there white WHAT OMG but it was before I knew of Melanoma and the dangers .There is hope.

 

What I would like to see every one do is to make a change. A  lady that is in charge of The Miles For Melanoma walk here in the DFW area has inspired me so I jumped on the band wagon full trottle.I know can see my purpose were GOD wants to lead me I am in a happy place for the first time in many years I actually smile daily.

 

I hope everyone to know there is hope don't ever give up. If you live near or far please register for the walk( there will be a live band,mama grams (go figure) it will be worth it and raising money for a great cause rather being a warrior,care giver,loss of a loved one we need to honor those people!1 I'm on Facebook more often and you can always message me if you need support or to vent or to find out what you can do in your community..

 

www,mamtexas.org

 

Hope to see of you there and again I'm here for support for everyone I know all to well the crazy life we lead once we are DX. Many blessing to you and yours.

 

Barbara Culpepper Wagner 

P.S. Forgive all the typos 

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melissa ann's picture
Replies 4
Last reply 10/18/2013 - 6:27pm
Replies by: kylez, Anonymous, Bubbles, awillett1991

Hello all, just need some thoughts and experiences. My husband, Peck is a stage 4 survivor for over 10 years. A quick summary of treatments....surgery x 4, interferon, GMCSF, NED for 5 years, high dose IL2, Yervoy x 4 infusions, anti-pd1(non-responder)(Moffitt), TILS harvest( no treatment as of yet), IPI /biochemotherapy trial at MDA,and reinduction of IPI x1. Whew!
The latest.... Disease in lungs(small), left neck, left axilla, chest and now 5 very small brain lesions. Peck s currently in hospital dealing with some dehydration issues so we have one on one contact our doctors. Dr. Amin in Charlotte is our melanoma specialist. Today, they are discussing best way to go with treating brain...SRS vs. WBR. Just asking for some thoughts or experiences any of you may have. This melanoma journey is much more tolerable because of all of you and this board....peace and healing to all! Thank you in advance, Melissa

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bigb0624's picture
Replies 1
Last reply 10/17/2013 - 8:54pm
Replies by: POW

i HAVE BEEN ON ZELBORAF FOR ALMOST ONE YEAR (3 MONTH BREAK FOR IPPI) AND I HAVE BEEN HAVING GOOD RESULTS.  MY ONCOLOGIST HAS THROWN OUT THE POSSIBILITY OF STOPPING Z FOR 2 MONTHS AND THEN POSSIBLY STARTING THE NEW BRAF DRUG AFTER THE TWO MONTH HIATUS. 

HAS ANYONE TRIED THIS AND IF SO, DID YOU HAVE GOOD RESULTS?

BARRY  

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MattF's picture
Replies 6
Last reply 10/18/2013 - 12:32pm

I met with the Radiation oncologist today and I meet with the melanoma oncologist tomorrow.

Stage IIIB Paratidectomy / Neck Dissection 3 weeks ago...2 nodes and parotid gland positive.

1st step Radiation 5x/week for 6 weeks.....starting next week.

I will see what the medical side has in store for me tomorrow when i go.

But can anyone tell me about experience with radiation?

Interested in side effects and if it was given with systemic treatment to follow )(ie yervoy trial or interferon) or is it in place of other treatment etc?

was it effective etc?

I guess no matter what i will know the plan tomorrow.

Thanks

Matt

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Lori Stoen's picture
Replies 7
Last reply 10/24/2013 - 2:48pm

I want to say that I am so glad I found all of you folks on this board....I may not have written alot but I always had references to look at and so very many stories of hope And With knowledge beyond words also . It is with a heavy  heart that I share the news of my dads passing . Last thursday 10/10/13. He was diagnosed 7/6/13 .with no physical symtoms .... he had 2 treatments of the yervoy, but one thing after the other started happening. ., melanoma stole my dads breath and voice... I pray for an end to this relentless disease. .

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Lisa - Aust's picture
Replies 9
Last reply 10/19/2013 - 7:41am

Hi Everyone,

Just wanted to come and share some great news we received today.

My husband Craig has been waiting to start the Merck PD1 trial for just over 2 months. He had been travelling along really well on Dabrafenib for 2.5 years when all of a sudden one of the nodes he originally had popped up again - measuring 3.5 cm.

Despite him 'timing things well' with regards to his reoccurance, a couple of delays with the trial over here in Perth meant that he has essentially been off any treatment for around 9 weeks. We went to see the Onc today to find out his randomisation and discuss the results of his baseline scan from last week.

As you can imagine, despite it not having any bearing on starting the trial, we were still very anxious about the results. As many of you know, Melanoma is so unpredictable, and being off treatment for such a long period of time - well I dont need to explain what we were worried about.

So you can imagine out shock, surprise and disbelief when the Onc told us that his tumour has shrunk by over 1 cm during this time on no treatment, and no other tumours have popped up. I have heard of spontaneous regression - but never thought it would happen to Craig.

He has stumped his very clever Oncologist and we are obviously still trying to let it sink and and are thanking our lucky stars. After 6 years of dealing with Mel - it was nice to catch a bit of a break today.

To top off the great day, we found out he has been randomised to the pd1 drug every 2 weeks. He is first in WA on this trial and was first on the GSK dabrafenib trial too, 2 and a half years ago. Like I said, he has timed his 2 reoccurances particularly well! Fingers crossed the drug takes care of the rest of that little sucker.

Well, just wanted to share and maybe provide some hope to others out there fighting. 

All the best

Lisa x

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ajolvey's picture
Replies 6
Last reply 10/30/2013 - 10:18am
Replies by: ajolvey, heather F, Janner, Anonymous

Recently diagnosed. Not sure where to start...

My melanoma is on the back of my leg and is a T1A, Clark's level 3. The depth is into the pappilary dermis. Does this mean it is more likely to have begun to spread?

Anybody had melanoma in that location? How bad is the surgery to remove it and what is the recovery time?

Thanks,

Aaron

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KnowThyself's picture
Replies 7
Last reply 10/17/2013 - 8:49pm
Replies by: POW, Tina D, casagrayson, KnowThyself, Anonymous

History:

Thin lesion on ear helix, finally removed after biopsy, excision, wide excision with skin graft, and finally wide excision removing a good chunk of ear but now have clear margins..

Lesion was thin, so they never questioned the possibility of spread, in fact I never even got a thickness until AFTER the FULL excision, when most of it was gone anyway.. At THAT time, depth was .8mm.. (wonder what original thickness was? who knows..)

***In back of mind, although thin, is there a possibility of surgical enduced spread?

Lately, have been having SEVERE symptoms. Daily headaches, severe fatigue, immense pressure in head like I could cry blood or bleed out my ear holes, loss of coordination at times (falling while walking UP stairs, running into things) And silly little things like putting sugar in the coffee basket instead of grounds, and if I drop something, seems I re-drop it again 3 or 4 times before I can even stand back up all the way from picking it up the FIRST time!

Today is the worst by far... Woke up with a MASSIVE headache, extreme fatigue, was wondering if I was going to make it to work driving! I saw my primary doc on the 9th of this month, presented him with these symptoms, and he sent me with a script for an anti depressant to treat tension-type headache. I understand where he's coming from, and wants to rule out any other possibility before we get into imaging, but it's been over half a year since these headaches started, and they are getting MUCH worse, and now accompanied by other things..

I have not taken the meds yet. (amatryptaline) Got them filled, but am debating because 1) I dont like taking pills, especially anything more than ibuprophin, which wont even cure the pain, it somewhat lessens it. 2) I dont believe this pain is from tension type headache, I really dont want to think it's from the melanoma, especially where it was thin and borderline in nature, but I cant help but shake this feeling that SOMETHING is going on in my brain, melanoma or not. 3) If I were to have tension headaches (or depression) They would have surfaced LONG before now, I consider myself to be a VERY strong individual and can handle any stressors or angst in my life. (though there is actually none at this moment-besides this pain!)

I will be calling him today (oh and Ive never seen a mel specialist through any of this, have been treated by primary physician for biopsy, ear nose and throat doc for full excision, and plastic doc for wide excisions and graft.) But rather than waiting for november to follow up, I want imaging done NOW, and I want bloodwork done, because when something takes away your ability to function normally, it needs to be diagnosed, and remedied ASAP...

Am I wrong to worry this much? Has anyone else had these symptoms and it end up being something wrong in your cranium?

Thank you :'(

 

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jean pierre's picture
Replies 2
Last reply 10/28/2013 - 12:02pm
Replies by: Anonymous, Tina D

Hi All

 My wife 33 years old , had 2 moles removed 18 month ago witch tested positive with melanoma, the doctors said they removed all and she is fine.

She complained about her hip and after about a month of seeing one Dr after the other the scan showed a tumor in the hip.

After waiting for 3 weeks and no treatment she went for a PET scan and the cancer is now in her hip back and liver.

Its almost  2 months now and still no treatment , we are waiting for the B-RAF test and hopefully she can join a new trial in South Africa.

I read about YERVOY is it available in south Africa ? Do the medical aids pay for it and is it an option ?

The Dr said surgery is not an option and chemotherapy is not very successful , can you please give me some advice and hope ?

 

Thank you

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HelenQLD's picture
Replies 10
Last reply 10/18/2013 - 8:34pm
Replies by: awillett1991, Anonymous, POW, kylez, Janner

My mums braf test is negative and she has rheumatoid arthritis which means she can't have immunotherapy.

The oncologist has said she can only have chemotherapy which onky has a 10% chance of success.

She has mets on her liver, spleen, lungs and brain.

Where do we go from here?

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We are in the process of organizing a nationwide study amongst Melanoma Stage III and IV patients. We are seeking patients and their caregivers/family members.  
 
Time: Open 
 
Location: From home - writing answers to the same 6-7 questions for 30 - 45 minutes a day for 1 week
 
Compensation:  You and your family member/friend/spouse will receive $325 in total for your participation, which can be donated if you so wish. 
 
All responses will be confidential and aggregated and/or without identifying information.
 
Please contact Shanon Sitkin at shanon@clinicalrss.com should you be interested.
 
Thank you,
 
Jan Mallery-Groom
Clinical Research Support Services
+415.896.4645

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rlowe's picture
Replies 5
Last reply 10/16/2013 - 10:52pm
Replies by: Tina D, rlowe, Kim41, SABKLYN

I very rarely post, but check in regularly. I'm sending good mojo to everyone in their battle with the beast. I'm happy to say that I reached my 2 year NED mark in September with help from Vanderbilt and the 10mg ipi trial. I only had 3 infusions before my pituitary couldn't take it though. I now move to 6 month scans woo hoo!!

To everyone fighting..strength to those whose fight is over...peace

Rusty

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sbrooks90's picture
Replies 4
Last reply 10/15/2013 - 8:36pm

Hi Guys,

Thought id throw up a post here as I need some help from the MPIP community. After visiting with the medical oncologist today we determined that my only treatment option would be to do Interferon Alpha or watch and wait (Clinically NED)

A few clinical trials were discussed using vemurafenib vs placebo and ipilimumab vs placebo but we decided those weren't good options for me.

Anyway just would like some feedback on what people have done (IFN - a or watch and wait)?

Many thanks guys,

Samuel

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