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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Mat's picture
Replies 1
Last reply 8/29/2013 - 1:42am
Replies by: Lisa - Aust

Hi Everyone,

I've been on the Taflinar-Mekinist combo for about a month now and have had outstanding results.  One nuisance (minor in the scheme of things)--before I started on the combo, I developed a numbness in part of my lower right jaw and chin.  The sensation is similar to the effect of a shot of novacane at a dentist's office (albeit one that never goes away).  An MRI revealed a lesion in my jaw--likely bumping-up against a nerve.  The combo has not resolved the issue.  Any thoughts?  Is it the case that BRAF inhibitors somehow "don't get to" bone mets?  Thanks in advance for your replies.

Mat

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meldad's picture
Replies 6
Last reply 8/28/2013 - 4:16pm

Hi everyone,

I don't post much but I read everyone's posts almost daily.
I'm just wanting to know how people have gone on ippi? What side effects have you experienced and weather it was a success?
My dad is about to start his first infusion next week.

Any info would be a great help!

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mclaus23's picture
Replies 5
Last reply 8/28/2013 - 4:03pm

I've told my dad numerous times to cover up if he even travels to the grocery store...he didn't listen and has photosensitivity to his face. Has anyone had this and if so how did you treat it? He will now be wearing a hat I gave him and long sleeves. I don't think he realized how harsh it is.

Thanks!
M

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mclaus23's picture
Replies 6
Last reply 8/28/2013 - 4:01pm

Has anyone incurred a new melanoma in the form of a mole on Zelboraf? My dad has a new mole that appears as a melanoma or it could be a wart which I know is common.
He is getting checked on Friday, however, am looking for feedback from the group.

Thanks in advance!!!
M

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SteveH230's picture
Replies 12
Last reply 8/28/2013 - 1:03pm

I just thought I would offer some good news and encouragement to those who are currently dealing with brain mets, seeking access to PD-1 trials, and/or considering WBR.  You can read my profile for a more in-depth history of my wife Heather, but the quick summary is that she did IL-2 last fall and then Ipi which ended in March.  Everything was stable after Ipi except for 2 tiny brain mets of her meninges (2mm and 1mm).  SRS stabilized them in May, but a new one popped up (4mm) on the June scans.  The doctors were worried about it being leptomeningeal disease, but more MRIs ruled this out.  

Rather than risk this happening again with more SRS, her doctors at Emory (and 2nd opinion at MD Anderson) recommended Whole Brain Radiation plus Temodar.  The idea being that it would stabilize everything (at worst) and prevent new things from popping up.  July was no fun going through the treatment (fatigure, nausea, vomiting, daily trips to radiation), but it was all worth it!  

She got a "stable" MRI completed on Tuesday this week and we went straight to Vanderbilt yesterday to do the screening for the MK-3475 vs Chemo trial (for patients progressing on Ipi).  Things are moving very fast and we will found out later today or tomorrow if she has been officially accepted and whether she will start on PD-1 or chemo.  There is crossover available if you get chemo, so we are comforted by that.  The trial nurse said that so far every single patient of theirs on the chemo arm has crossed over at the 12-week mark.  Makes you wonder why it's necessary to keep that part going, but rules are rules.  

Vanderbilt has an outstanding melanoma team and a TON of trials available, including at least 4 anti-PD1 trials (BMS & Merck vs chemo, Ipi-PD1 'concurrent' combo, and Ipi-PD1 'sequential').  Though we are fairly new there and drive up from Atlanta, we are very happy with everything.  Yesterday we had to do labs, consent forms, doctor visit, EKG, and a CT scan.  Never had to wait more than 10 minutes for anything except the CT.  Dr. Puzanov is quite a character and very upbeat/encouraging.  Appreciate any thoughts and prayers you can send us as we await the news from randomization.  We want the good stuff right out of the gate!  

Thank you,

Steve

Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

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Roxy1453's picture
Replies 1
Last reply 8/28/2013 - 10:54am
Replies by: POW

I decided to have the needle biopsy on my lung. Had it done yesterday, now I sit a wait to find out if it is Mel. Hope to hear by the end of the week, if I get really lucky! The waiting is the hardest part!

ThanKs for all of your responses!

Nancy

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

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DonnaK's picture
Replies 11
Last reply 8/28/2013 - 1:45am

Hey.  After a whirlwind tour of WBR and 1 dose of ipilimumab, my husband is switching to dabrafinib due to his rapidly deterioriating condition. I was surprised to get the bottle today and see the dosage said take two pills (150mg total) once a day, instead of twice a day.  For those of you currently on dabrifinib/taflinar, what dosage are you taking? I put in a call to John's oncologist but wanted to check here as well!

Thanks!

Donna

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joycedixon's picture
Replies 9
Last reply 8/27/2013 - 11:23pm

After 5 months of zelboraf,the lesions on liver and lungs are GONE. Uptakes on lymph glands went from 12 to 2

so  very  happy that I have responded.I am on full dose .Joint pain ,skin problems and lately losing quite a bit of hair--

First couple of months were the worst with the joint pain.I figured out if I did not climb chairs,change babies on floor or twist my knee--I would be okay.

So I am careful how I move --It doesn't have to be strenuous and immune system overreacts.Once my knees get sore--my arms do from extra strength

needed.--

Doctors are not familiar with intermittent dosing.If you have been on zelboraf for many months,Have you had any time off?I am referring to a

week off every once in a while.I know they have not done research on humans but results were good on the mice.

 

 

 

 

 

 

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JerryfromFauq's picture
Replies 2
Last reply 8/27/2013 - 10:55pm
Replies by: JerryfromFauq, Anonymous

I believe that inflammation is a part of metastasis and tumor growth. I also believe that diet can have an effect on inflammation. I do not believe in ignoring Western medicine to go wholly into other Holistic lines of attack. I strongly suspect that an overlap between the two is best for us.   Dr Andrew Weil (founder, professor, and director of the Arizona Center for Integrative Medicine at University of Arizona ) is again presenting his Anti Inflammatory Diet on the Dr Oz show on Aug 28th. My Oncology surgeon recommends listening to Dr WeiDr Weil believes alternative medicine should be used in conjunction with, rather than instead of, mainstream allopathic methods.   Here is Dr Weil's site. www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

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

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/27/2013 - 1:39pm
 
Over the course of 12 months, I have had several moles removed.   Four were mildly dysplastic and 1 was moderate and required further extraction.   Right now, I do not think I have any other dysplastic nevi.  I did not know about dysplastic nevi prior to this year and I am becoming very frantic.
I have a few questions.
First, what is the risk of melanoma for someone with five dysplastic nevi?
Second, is it possible that I do not develop anymore of these moles?
Have you personally known someone with numerous dysplastic nevi that never developed melanoma?
My doctor said I will have six month follow ups for two years, does this mean I am most at risk for the next two years and if I did not develop anymore in the next two years, my risk factors for skin cancer go down? 

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boomer4676's picture
Replies 7
Last reply 8/26/2013 - 10:25am

Hello, I am trying to find out information about spitz nevi in children. 
In April, my then 5 year old son had what looked like a sticker on his shoulder. Because we live out in the country and he is 100% boy, it wasn't out of the norm for him. We put drawing salve and a bandaid on it and waited for the sticker to come out, only it didn't. 
Over a few short days, the sticker began to look like a wart. We treated it with Compound W. Needless to say, he is way too much boy for a small patch to stay on for the amount of time required. We spoke to our pharamsist, they reccommended freeze away. The "wart" began shrinking only to spring up again. 

 

We took him to our local doctor to have it removed. He told us it was not a wart and cut out 1mm on all sides and 1/2 cm down to remove the "wart" and sent it to pathology. After waiting almost an entire month and three pathology reports, we were told it was melanoma. Finally we were sent to Denver Children's. 

 

We had to wait almost 3 weeks for Children's get obtain the slides. They were hoping to find the lesion itself but did NOT ever find it...how nice. Our local doctor's office was SLOW getting anything sent to Denver even though they promised my son's information would be there for the appointment. Once the doctor obtained the slides and reviewed them, we were told it was a spitz nevus. 

The Denver doctors would like to cut it open again. I am simply confused as to of WHY. His surgery is set for Friday and should last an hour and a half. I am not feeling very comfortable with the opperation. Has anyone else dealt with this? 
I have read some posts about spitz nevi in children but no one has ever had them removed and then removed again! How will they know where to even opperate?!?! 

 

Thank you! 

Seriously frusterated mommy. 

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I just found out a week ago that Scott's life insurance policy has an accelerated benefit.  You can take half of the policy money up front and then the remaining half is paid out to your beneficiary upon your death.  I thought I'd share the info because I ran into it on a whim and would have never known.  No social worker, HR person or otherwise had mentioned it.  It appears that most policies have this.  If you are interested, find your policy and read up.  

The money could be a great help for travel to trials, paying cobra or whatever, you can even take a vacation.  They don't care what you do with it. It's required that your physician state that you have 12 months or less to live.  But there is no pay back required if you don't die. 

Just thought I'd let everyone know and hopefully it can help someone else out. 

Lisa (Scott's wife)

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Anonymous's picture
Replies 5
Last reply 8/25/2013 - 4:11pm
Replies by: Anonymous, JerryfromFauq, POW
Research August 22, 2013
 

 

 

Recent Childbirth Is an Adverse Prognostic Factor in Breast Cancer and Melanoma, but Not in Hodgkin Lymphoma

 

Eur. J. Cancer 2013 Aug 06;[EPub Ahead of Print], H Moller, A Purushotham, KM Linklater, H Garmo, L Holmberg, M Lambe, D Yallop, S Devereux

 

 

 

 
TAKE-HOME MESSAGE

 

Prognosis is poor in women with a pregnancy-associated breast cancer or melanoma (pregnancy-associated cancer defined in this study as childbirth within 1 to 5 years prior to the cancer diagnosis). The authors suggest cause independent of tumor stage, possibly a biological mechanism, is at play.

 

ABSTRACT

Background: The relationship between gestation, childbirth and cancer prognosis is unknown for most cancers (e.g. Hodgkin lymphoma), whereas a body of evidence exists for melanoma and breast cancer.

 

Methods: The national cancer registration and hospital discharge data for women in England (1998-2007) were linked, and the records for Hodgkin lymphoma, melanoma and breast cancer were indexed as to whether women had delivered a child in separate time periods prior to their cancer diagnosis. Survival analyses were conducted in order to characterise prognosis in relation to childbirth, with statistical adjustment for age and (where possible) stage.

 

Findings: For melanoma and breast cancer, survival was strongly reduced in women who gave birth in the year prior to cancer diagnosis. The age-adjusted hazard ratios (HR) with 95% confidence intervals (CI) were 2.06 (1.42-3.01) for melanoma and 1.84 (1.64-2.06) for breast cancer. The associations were only slightly attenuated by further adjustment for tumour stage. For breast cancer, the excess death rate in women with a recent childbirth peaked at 2years and remained elevated for 6 to 8years. Previous childbirth had no overall effect on the outcome of Hodgkin lymphoma.

 

Interpretation: Melanoma and breast cancer prognosis are adversely affected by recent gestation and childbirth in a way that is not due to stage of the cancer, but rather to inherent biological properties of the tumours. Possible biological mechanisms include immunosuppression (melanoma), the hormonal milieu in gestation and a tumour promoting microenvironment post-partum (breast cancer).

European Journal of Cancer
Recent Childbirth Is an Adverse Prognostic Factor in Breast Cancer and Melanoma, but Not in Hodgkin Lymphoma
Eur. J. Cancer 2013 Aug 06;[EPub Ahead of Print], H Moller, A Purushotham, KM Linklater, H Garmo, L Holmberg, M Lambe, D Yallop, S Devereux

The publisher has made this article available for free until 9/5/2013 12:00:00 AM .

Access this article now

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2013 - 4:05pm
Replies by: JerryfromFauq, POW

Hi all, I am currently 32 years old, and I was almost four years past my initial diagnosis of Stage IIIa malignant melanoma, when I was diagnosed with a second primary in March of this year at 31. I had another WLE done, though with much smaller margins as this was a much smaller mole and Stage I. My concern (among many) is that I now have this white spot that has spread across the pink of the scar, and if it is pressed, I get a sharp pinching pain. Has anyone else had anything like this? It has been about 5 months since the WLE, so I'm not sure if it's just a symptom of healing, or if I should be concerned.

Additionally, I am having a really hard time with lymphedema right now, but not the way I normally present. This time, most of my leg is actually LESS swollen then other flare ups, except the top of my foot and my ankle. I also get a sharp burning pain up the top of my foot into my shin when I point my toe, and if I press on the front of my shin, it feels like it is deeply bruised. I had an ultrasound for DVT, which thankfully was negative, also no cellulitis, so that is good, but no one seems to know what could be the cause of the pain. I have been resting on the idea that perhaps it's just sensitivity caused by the swelling on the top of the foot, but if anyone has any insight, it would be greatly appreciated!

Don’t say your world stopped [following a cancer diagnosis], you can make the choice today to turn it around so that your world will only just begin. It is a good experience to learn how to overcome a cancer diagnosis and to be in charge of your body rath

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kerstinmagnuson's picture
Replies 4
Last reply 8/25/2013 - 3:43pm

My dad has stage IV melanoma with involvement in the brain, liver, and lungs. In Nov. 2011, he received the first diagnosis of melanoma from a node in his belly button. It hadn't spread at that point, but a scan in the summer of 2012 revealed melanoma in one lymph node. The nodes in that area were all removed, but in September 2012, a scan showed that the cancer had become metastatic and was in his liver, lungs, and brain. At first, he received Ippi treatments, which were ineffective. He then had a chemo cocktail of three agents, one of which was Avastin. That was only moderately effective. He also had gamma knife surgery and radiation for his brain tumors. In May, he entered an anti PD1 clinical trial, but was just taken out of it after a scan revealed tumor growth in his lungs and brain. He is supposed to start more chemo treatment again, including an oral chemo that is supposedly more effective against brain tumors. Does anyone have any suggestions of some other treatments we could try? We are open to trying anything that might help. Thanks! 

 

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