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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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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nikki7465's picture
Replies 3
Last reply 10/17/2013 - 1:49pm
Replies by: awillett1991, nikki7465, Mat

Hi Everyone,

I'm just wondering if anyone knows of an oncologist willing to prescribe a BRAF inhibitor with a MEK inhibitor?

We are located in Canada, but see an oncologist in Michigan as well and are willing to travel within Canada or the U.S. to get it.

thanks

Nikki

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dora201077's picture
Replies 2
Last reply 10/16/2013 - 5:31am
Replies by: fortiz, POW

My husband has been diagnosed in may 2012 with st 3 b melanoma; first tumour in the right sole. First he had that removed, plus a santinel node behind the knee and numerous inguinal limph nodes, 3 surgeries in one. The sole tumor was malignant and an inguinal node. He had chemo for 6 months, and then, in february 2013 after a regular CT they found nodes in his abdomen. they surgically removed them and they were negative for cancer; Next regular CT showed a mass in his tigh, it was removed and found to be a transit determination of the melanoma. They decided that my husband should take interpheron, high dosage the first month and then normal dosage for year. But on 23rd sept he had a PET CT and there are lung nodules 4-7 mm and 3 different mediastinal nodules, that cannot be surgically removed.

The braf mutation was found on his primal turmor, so it tested POSITIVE.

The right treatment would be VEMURAFENIB and IPILIMUMAD, newest drugs in melanoma. We tried to find a posibility to get the treatment in Romania, because as you know the drugs are very expansive, but we couldnt find one. The one clinic we found, that had clinical trials with these drugs says they do NOT have trials anymore for these drugs, since they were used to be able to seel the drugs in Romania, too.

Recenty I found out on melanoma.org that there are 2 even newest drugs : dabrafenib and Trametinib..I wonder if they will do clinical trials in romania with those...

We cannot afford any of the new drugs..since they cost 23000 euros ipilimumab and 7000 euro vemurafenib...

If there's anything you could advise us to do, please do so...since my husband and me reached a point when we don't see any way of managing this terrible disease.

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bkinman's picture
Replies 1
Last reply 10/15/2013 - 4:26pm
Replies by: POW

Have been on tafinlar since 8/²2 and MEK since 9/1. Last couple weeks I have been having mood swings. I take anti depressants for dsythymia (long term depression). Haven't had any issues for a couple years, but the last couple weeks have had spells of irritability and crying reminiscent o my pre-med days. I know the struggle with Mel is enough reason to fight with depression, but I really don't think that is it. Can't find much about depression and the combo as they are so new. I wonder if it reduces the effectiveness of the anti depressants.
Any experience or thoughts?

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lbc's picture
Replies 2
Last reply 10/17/2013 - 7:10pm
Replies by: lbc, Tina D

 

I have been on MK3475 for 14 weeks receiving 7 treatments.  I feel wonderful, my liver enzymes have decresed (LDH by 25%) but my tumors have multiplied and increased.   I believe that the scans are not truly  demonstrating what's going on inside of me.  I was wondering if anyone else has had this experience?

 

LBC

LBC

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nancyg's picture
Replies 2
Last reply 10/14/2013 - 8:09pm
Replies by: nancyg, Zan

My husband just finished his 2nd ipi infusion... Absolutely zero side effects.... Just very minor upset
stomach, but has had stomach issues for years...just so worried ipi is not working... I read some where that
A good indicator might be absolute lymphocyte count like if it increases to 1000 after 2nd dose ...have copies of his blood work and I do see lymphocytes 4.0. And then another one on the same sheet lymphocyte% 48
Does anyone know what that means?? Is Absolute Lymphocyte count a different thing?? There is no ALC
Listed on the results??? I will ask when we go next time... But would appreciate any input from all of you .
Thank you!
Nancy

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As many of you know, caregiving is not an easy task. Join the MRF and the MRF's CURE Ocular Melanoma initiative for the second webinar in the Psychosocial Series: Caring For The Caregiver.  The webinar takes place this Wednesday, October 16 from 4-5 PM eastern. Registration is FREE and required. Click here to register.

Thank you to presenters Gregory Garber MSW, LCSW, CCM and Bonnie Crouthamel MSS, LSW, from Thomas Jefferson University Hospitals Cancer Center. 

Hope you can join this informative (and free!) webinar.

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