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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mark d's picture
Replies 6
Last reply 2/8/2013 - 9:28pm
Replies by: mark d, Janner, washoegal

I found out 1 Feb I have NM. I posted it a few days a go and got great advice.I had it for at least 4-5 month when they did a shave biopsy. They only got 2.7 mm off when they did the biopsy. Yesterday I saw the oncologist at BAMC. They just asked questions did a quick check on my body and scheduled a surgery appt for march 4.. Considering the fast rate of NM and no other tests were done and the only info is from a shave biopsy, isnt this quite a bit of time to wait? How fast have others had things taken care of? I am in the military and can go else where for treatment .
V ç

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Erinmay22's picture
Replies 8
Last reply 2/8/2013 - 8:22pm

I'm wondering what folks liver levels have been on Z.  I started taking May 30th.  Had to take a 1 week break due to severe rash.  Before taking Z my ALT level was around 16.  Then 10 days on it was at 40 and then 2 weeks later at 120.  I think normal range for women is between 5-37.  They are doing repeat labs again on Thursday.  Guessing that is to watch my liver levels.

Also my Bilirubin was at 0.9 on 5/22 (before taking Z) and then actually at 0.7 10 days later but 2 weeks after at 1.7.  These were taken this past Friday!

I started Z because in May I had a section of my small intestine with significant wall thickening.  And my hemoglobin had dropped to 5.6.  On Friday it was up to 10.8 (I did have a blood transfusion 5/22 which brought it up around 9.7).  

Any suggestions on what to avoid to help with liver levels elevated?  I know Alcohol and other medications.  

Thanks,
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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My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

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My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

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Gene_S's picture
Replies 2
Last reply 2/8/2013 - 7:05pm
Replies by: Anonymous, H555

A new melanoma related webiner was posted yesterday see:

http://www.melanomainternational.org/news/

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

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qtkitycat's picture
Replies 3
Last reply 2/8/2013 - 5:30pm

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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bioguy's picture
Replies 1
Last reply 2/8/2013 - 5:29pm
Replies by: Janner

Finally got the call with  my biopsy results today.  As some of you suggested, it was indeed basal cell carcinoma.  This has been an amazingly frightening and revealing week for me.  It has certainly increased my awareness of melanoma and related skin cancers.  I'm a scientist by training and work with the federal government, though my specialty is infectious diseases.  Sadly, my knowledge of melanoma was very limited.  I, too, thought it was a disease of the very old or only those with extensive sun exposure.  When I talked to a friend earlier in the week about my biopsy anxiety, even she commented that, "well, even if it is melanoma, they are so good these days, they just cut it out and that's it."  I'm thankful this time that it was only BCC, but it has definitely increased my awareness and I intend to spread the word.  Due to the large number of atypical moles that I have, I made an appointment to see a dermatologist for a full body scan next week, and I will spread the word to my family and friends.  Further, since I also have some adjunct faculty appointments, I will use my classroom as a chance to educate my students on melanoma and melanoma research. 

Thank you all so much for your warm acceptance and words of wisdom and encouragement, and I'm so glad I found this forum.  I plan to learn all I can about current melanoma research and how I can help.

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qtkitycat's picture
Replies 12
Last reply 2/8/2013 - 5:04pm

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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Jinx's picture
Replies 7
Last reply 2/8/2013 - 11:52am

 

I had my first Yervoy infusion on Friday (2/1) and actually had a side effect not from the Yervoy but from the Benadryl they gave me pryer to the infussion. Belive it or not I have never taken Benadryl in any form. Aside from this cancer, I really have never been one to get sick. The last time I was sick was about 15 years ago when there was a bad flu hitting.
Anyway...I started feeling very strange and felt like I was going to pass out, but not really dizzy. It was like a hyper anxioty about something about to happen, alone with a feeling I was going to pass out. My blood pressure dropped from 120/72 to 88/65. They opended the iv and flushed my vein. It fianlly went away after about ten minutes. 
Anyone else here have this happen? If so, did they use something other than Benadryl before the next infusion/

The only side effect I had from the Yervoy (if it really was one) was a few back to back adrenalin head rushes later that night. I was a little bit slow to get going the next day, but have felt fine since.

Jerry

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Carole K's picture
Replies 5
Last reply 2/8/2013 - 11:31am
Replies by: MissyA, Ali, Fen, DeniseK, Janner

Hi Everyone,

For all intents I am concisdered to be an OLD TIMER on the board eventough I rarely post anymore.  I am still NED after a brain met for which I had surgery 12 years ago today at NYU Medical Center in NYC.  I am still amazed and every day I wake up and say IT'S A BEAUTIFUL DAY, I OPENED MY EYES TODAY. NO matter the storm, the rain in my life or with the weather I still find many blessings.

We all know the diagnosis of Brain Met is considered a death sentemce.  I was petrified until my oncoldogst said.. Carole, noone can tell you where the statistics come from , nor nos they wre arrived at or how old they are. YOU ARE AN INDIVIDUAL AND YOU ARE DIFGFERENT FROM EVERYONE ELSE.  Those words stuc with me and still do to this day, 

I have been blessed to see both of my daughters married and three incredible grandchildren brought into the world and a fourth one on the way and a hopefully a fith one by the end of the year. What more could I ask for.  I spend so much time with my grandchidlren who make me smile and at times make me cry wiht a big kiss or a cry as I leave and say goodbye.  Wow.. I wouldn't  trade it for anything in the world.  No amoung of money could buy this happiness. 

To each and everyone of you on this journey, take a deep breath, try to find the gifts, there are many and yet at times I know how difficult it is to find them. the past 12 years have not been easy in many ways,.  I have lost far too  many loved ones, far too many Melanoma Patients I have connected with, a huge financial loss and at the same time I have witnessed two daughers being married, three grandhcidren being born, I have built a new house, I have traveled far and wide to meet so many of you , WE have shared laughter, tears and joy and I am so eternally gratefull to each and everyone who havr crossed my ;path.  You have brought me smiles, joys and laughtert at the times I have needed it most. You have brought me sanity in those times of insanity. You have brought me hope in times of Fear,Laughter in times of sorrw and most of all Love and Light I will teasure forever.

ONE NIGHT AT A PARTY MY DAUGHTERS HAD THE SONG   YOU ARE SIMPLY THE BEST, BETTER THAN ALL THE REST playerd for me. I  dediacate this song to all of you.  HANG TOUGH.. NEVER EVER EVER GIVE UP HOPE.  and To each and everyone of you I dedicate my song to my daughters.  Celine Dion  BECAUSE YOU LOVED ME.  Many years ago I also dedicated that song to two people I met on MPIP who are a huge part of my life to this day... Chip and Bonnie whose strngth and courage helped me through the most difficult time of my life. Despite the fact they were in the mdst of a very diffcult time of their own they were ther then and continue to be with me today.. 12 years later. Thang you All.

Love and Ligth

Carole K

IF I CAN BE OF ANY HELP EM AIL ME ATmm MMPatientSupport@aol.com  

LOVE AND LIGHT

CAROLE

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A new Phase II clinical trial just opened up for people who have progressed on a BRAF inhibitor. Several sites on the East coast and Tennnessee.

 

Clinical Trial Identifier: NCT01519427 

Selumetinib and Akt Inhibitor MK2206 in Treating Patients With Stage III or Stage IV Melanoma Who Failed Prior Therapy With Vemurafenib or Dabrafenib

They do NOT exclude brain mets. Unfortunately for my brother, they do require the patients to be relatively strong and healthy, which he is not. Might be good for some other people, though.

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joycedixon's picture
Replies 4
Last reply 2/7/2013 - 11:41pm

lump in femoral lymph node--dx in 2007 have been NED since then--any experience or encouragement

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Last friday i found out that i have nodular mel.. Doing what most normal people do, i went to the internet. I am at my wits end. I am 41 military in good shape. This is not supposed to happen to me. I had a growth on my earlobe that i didnt bother with until i found a mole that i didnt like. The mole was benign but the growth turned out to be NM. Tomorrow i go to Brooks Army Hospitol to do tests. The information i have about my growth is what my derm.gave me. They shaved 2.7mm off but didnt get the root for right now and this growth was on my ear for about 4 months. scared to death. I have no one to talk to about this. My wife is at her nevres ends also. I know that this is fast moving and dont want to die...

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sjl's picture
Replies 2
Last reply 2/7/2013 - 8:01pm
Replies by: Josh, jcmp

My husband had his first round of Yervoy nine days ago.  Honestly, one of the lumps on his neck began to change 2 - 3 days later and appeared to have gotten smaller.  I thought he was having an amazing response since I understand that this treatment takes awhile to work.  Since then, it enlarges a bit, then shrinks a bit from day to day.  What are your thoughts on this?  I guess I'm grasping at straws looking for some hope.  This board has been such a help to me.

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bigb0624's picture
Replies 3
Last reply 2/7/2013 - 7:47pm
Replies by: Dgentz, POW, Tim--MRF

After being on Z for almost 6 months and my tumors still shrinking, i began my IPPI yesterday.  Even though the Z is still working my doctor felt this was a good time time to start the IPPI.  Why wait until my body starts to reject the Z start the IPPI?  My body is strong enough to fight the tumors withZ now so let's start the IPPI now.  My doctor said i shouldn't experience much in the way of side effects after the first dose of IPPI.

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