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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Anonymous's picture
Anonymous
Replies 6
Last reply 5/23/2012 - 9:47am
Replies by: natasha, teri0915, Anonymous, Janner

Is it normal to still feel pain sometimes (not bad pain, sort of dull pain) in the WLE scar and even under the arm near the SNB site?  It's almost 10 months after surgeries.  I don't care about the pain, just want to be sure that isn't some sign of a recurrence, etc..  I know that would not usually present itself as pain, right?.

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Cari728's picture
Replies 4
Last reply 5/23/2012 - 12:39pm
Replies by: Eileen L, natasha, Linny

I was just wondering if any of you took any natural supplements after being diagnosed with melanoma.  Since my dad was diagnosed we have been  flooded with people suggesting natural teas and supplements that help fight cancer and some that help deal with depression.  He has started taking some and I'm afraid we might be hurting him more than helping.

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noisy77's picture
Replies 3
Last reply 5/24/2012 - 11:50pm
Replies by: ockelly, noisy77, Janner

This may be a dumb question but what is the difference between macrometastasis and micrometastasis.  I have never heard my mom mention this just that she has acral melanoma with 5 nodes positive.

 

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teri0915's picture
Replies 3
Last reply 5/23/2012 - 9:14am
Replies by: Janner, teri0915, Anonymous

Ct resluts so no growths!! Mri next month will show how the brain and spine mets are doing. Finally heard back about the three biopsies i had almost two weeks ago. One is a normal mole the second is mildly atypical, excision scheduled in June and the third on my melanoma scar is moderately atypical so excision also scheduled for June.
Oddly enough though my platelets and white cells are strangely low so i can not start my next cycle of temodar, which should have started tonight, until my counts are back up. Hopefully that will be soon!
Keep your chins up everyone!!
Best wishes
Teri

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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Replies by: Dr. Mark, Nicky

Hi all - I've posted this in a number of places not knowing which forum I was actually supposed to be in so hopefully I'm in the right place now.

So, here it goes...

My father was diagnosed with invasive melanoma with the desmoplastic sub-type about 2 weeks ago. Below are some highlights of the report:

A) Invasive Melanoma of the Scalp - Desmoplastic Type

         - Clark Level IV; Breslow Depth 5.1mm

         - Negative for ulceration

         - Margins negative

         - One benign sentinel node

B) Primary tumor: pT4a, 5.1mm depth, no ulceration, mitosis 2/mm2

     Regional Lymph nodes: pN0

     Distant Metastisis: pMX

     Pathologic Stage: IIB

     Lymphovascular and perineural invasion: Not identified.

I know of only one other person with this sub-type (well, only 1 who replied several days ago -- Thanks Kathy!) on this board and I just know there's got to be someone else.

Like I mentioned, this was today and I'm more concerned with the depth. They tested his blood on the spot which was negative as well as all blood panels (liver, etc.) -- I do know that this isn't really that much of a factor in determining though.

He's set for a CT scan and whatever else is needed and there will most likely be some adjuvant therapy because it was so deep (I'm guessing). Next week, he is also scheduled to meet with his radiologist as well as a geneticist to determine if there is a genetic pattern in our family -- which is interesting, considering my grandfather died of pancreatic cancer, his brother died of liver cancer, my uncle is in remission of colon cancer, and other relatives have had other kinds.

I would say based on what I've read, that the promising factor in my father's case is that it is a sub-type that is usually unlikely to metastasize; however, I still think this sub-type isn't fully understood -- and also given that it has a high rate of recurrence.

So, sorry everyone for the long-winded reply but this is really devasting to my family and I'm the one on the research end. My mother called me earlier and said she started crying when they took off the bandages and it was basically a crater in my father's head. This of course made me upset.

If ANYONE has had any 1st hand experience, I would appreciate the info, encouragement, etc. We are in the East Texas area and have some really great docs, including lines of communication with MD Anderson for our second opinions, but personal experience would really mean a lot to me.

THANKS!

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Janie64's picture
Replies 4
Last reply 5/23/2012 - 8:27am
Replies by: Anonymous, Eileen L, Janie64, washoegal

HI and Good Evening.  I just found this site and was hoping I could get some information regarding my Mom, who is 71.  Her background is this:  She has been in remission for 20 years.  Just over a year ago they found disease in her left lung.  They removed the upper lobe of the left lung.  She had a CT scan about 4 months ago and all was clear.  They did another scan about 1 month ago and found disease in her spleen and stomach. 

Yesterday she was in the hospital having laporoscopic look see and they closed her back up without removal of disease.  They said if they removed her spleen and ALL of her stomach they still would not have gotten all the cancer. 

I know my time with Mom is limited, but I cannot find out a time statistic.  I was hoping someone could share with me what to expect.  Is average time based on this being so advanced 4 months, 6 months etc.  I know the answer will be a sobering one, but I would like to be better prepared.  I am flying home in about three weeks to see her. 

Thanks

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Hi All,

I'm on what I think is a fairly heavy CT scan rate of every 60 days, and have noticed that over time the CT scans are causing a "hangover" effect almost akin to when I was on Interferon.

Drinking the barium is no problem, the injection of contrast causes the normal heat flush and odd taste/smell. Then as the day progresses I feel worse and worse despite drinking 56+ ounces of water during the afternoon.

Anyone else out there have the same experience?

Carpi Diem

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/22/2012 - 11:39pm
Replies by: noisy77, Janner

Oh no!  I got a total sunburn!  In 1 area, where I must've missed the sunblock, in about a 5 inch area.  It's a patch of FRIED skin.  No moles in that area.  Should I worry?  Schedule more frequent derm visits?  Have history of melanoma stage 0 diagnosis.

Freaking!

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awg's picture
Replies 5
Last reply 5/29/2012 - 2:10pm

I am glad to report that I am scheduled to complete my last sub-q interferon injection around July 18th. Overall I tolerated the treatment well and had only minor symptoms assoicated with interferon over the last year.

I was able to work full-time during the treatment.

My last PETCT was in December 2011 and it was all clear. I am schedule to have additional PETCT in September 2012.

I am thankful for this form and the depth of information and encouragement that is available here.

 

Regards,

 

Allen

Stage III

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himynameiskevin's picture
Replies 16
Last reply 5/31/2012 - 11:55pm

Tomorrow will be exactly 11 weeks on Zelboraf. And over a month completely steroid-free. So far so good I think. Side effects have been tolerable.. random joint pains, some worse than others that seem to switch up locations every couple days and the bottoms of my feet feel bruised. Some mornings upon waking, I can barely walk on them, but usually as the day goes by and the more I walk, the pain fades. Today for the first time, they almost feel fine. That's about it for noticeable side effects. My PET/CT scan done in mid April showed shrinkage and less activity in all the lung tumors. And nothing new anywhere else. I had an brain MRI done May 1st that showed continuous shrinkage and fading in the tiny brain tumors. Most likely thanks to the SRS. But there were a couple miniscule questionable "spots" that weren't SRS-ed that have shrunk or disappeared as well, definetly attributed to the Zelboraf. So I'm thankful. So I'm 11 weeks in and no scheduled scan set... I'm sure I'll be having another Brain MRI in the next month or two. As they stretch out the time between scans, I can't help but worry from time to time about this stuff's effectiveness fading away and what options will be left and/or available. But hopefully it won't resort to that. Thanks to Dick and a couple others on here who seem to be having a lasting and durable response, you give me hope. I think about you all, multiple times, daily. Today is actually my birthday.. I made it another year. :) Thank you all for the ongoing support. The help and hope is the best gift I could ask for. 

-Kevin 

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mommydog's picture
Replies 1
Last reply 5/22/2012 - 2:18pm
Replies by: himynameiskevin

My husband is in the hospital due to infection of unknown origin, raised liver enzyme levels (bilirubin) and excruciating pain in his lower back, sacrum. We thought this might be due to a new met in the sancrum, but nothing has changed in that area ( there is a met, but no noticeable change). Has anyone had experience with Zelboraf causing either of these conditions, that is liver problems and/or lower back pain?
Thanks
Deborah

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Snickers60's picture
Replies 1
Last reply 5/22/2012 - 12:16pm
Replies by: Linny

I am happy to post that after a month on ZELBORAF, Wayne has no more fever !   He does have some FEET PAIN and JOINT pain that is pretty bad, but

we have found him some relief doing Epsom Sats Soaks.    He is also taking a B-100 vitamin which seems to have helped him a lot with energy.  Also

taking Tumeric.   His hands and feet swelled so much over the weekend he couldn't wear shoes.....but it is slowly going down now.  He is still working.

His tumors had SHRUNK from 2.6 to 1.8 and from 1.6 to 1.1 at last weeks MDA visit and CAT SCAN !    YESSSSSSSS and AMEN it's working !!!!!   Hope you all have a tolerable day with limited pain and side effects.

Nancy (devoted wife of 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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rrrule32's picture
Replies 6
Last reply 5/23/2012 - 8:28am

Hello all, my name is Travis and my wife Kaitlyn has Stage 4 melanoma.  She is 23 years old.

I've been reading about a highly effective drug called Dabrafenib.  It has not yet been approved by the FDA.  I think we all need to ban together and get on the FDA to get this drug approved so it can start saving young lives.  

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Replies by: Anonymous, john partrick michael murphy

https://www.facebook.com/home.php#!/media/set/?set=a.2481994291537.2113457.1302967109&type=1                             this is his Melanoma Story in pictures. Pray for Steve.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Lisa13's picture
Replies 11
Last reply 7/20/2012 - 1:03am

Next week, I'll be having my first craniotomy.  For those who've experienced them, how long does it make you feel better? 

Many impossible things have been accomplished for those who refuse to quit

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