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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jmmm's picture
Replies 2
Last reply 12/17/2011 - 11:52pm
Replies by: kylez, deardad

My husband had a craniotomy 2 1/2 weeks ago and (at least to me) it seems like he's dropped into a deep depression. He is on a heavy dose of Keppra (anti-seizure drug) and Zelboraf, so I'm not sure if it's because of all the meds or not. He's sleeping most of the day, tossing and turning all night and when he's awake, he's just sitting on the couch watching TV or reading with a glassy look in his eyes. He doesn't want to leave the house, but does get over stimulated with the sights and sounds whenever we go out. I'm really struggling with all of this...we have 3 children who need their Dad. He's supposed to do gamma knife on Thursday and I know he's worried about that. He's been stage 4 since January, but has never been down like this. Has anyone else been through this? Any suggestions (other than anti depressants..he refuses to even consider it)?

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Angela C's picture
Replies 4
Last reply 12/17/2011 - 11:35pm
Replies by: kylez, Angela C, King

Hi there.

I currently have an adrenal gland tumor that is pressing on my liver. They do not see any mets in my liver, but the latest CT write up said that they cannot exclude invasion of the liver.

The only side effects I have noticed from the adrenal gland tumor has been some lower back aching on the side of the tumor and a sharp pain in the lower back on occasion. I was just wondering what others with adrenal gland tumors and liver mets have noticed as side effects?

I just had my first CT after Yervoy and the adrenal gland has continued to grow. I don't have anything new and the spots in my lungs are still stable. We don't know that what is in my lungs is even Melanoma. I've had two biopsies of areas on concern in the lungs before and they have not been Melanoma. But, the existing spots have never been biopsied and have been stable now for almost a year. But, the doctors still treat it like it's Melanoma, even though it could be nothing as the others were.

We are waiting to do another scan at the end of January before making a determination that Yervoy didn't work for me. I'm just wondering what I should keep an eye out for as an indicator that things could be progressing into the liver or the adrenal tumor could still be growing.

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Anonymous's picture
Anonymous
Replies 0

How are you both doing?? Happy Holidays to you & your family.

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Most of you probably won't remember me but when I saw your names the warmth came flooding back. Charlie s, janner, barbie girl, bonnilea to name just a few. I'm so glad your still kicking mels ass. Just because I rarely pop by now, your all still very much in my thoughts. I'm just trying to get by without thinking of the beast too often, easier said than done sometimes as you all know. Well i just wanted you to know that you all remain in my heart in a very special place for being so helpful and encouraging when I first sought out mpip almost 6years ago. Thanks guys your all amazing. I wish you all a very merry Christmas and may 2012 be a kickmelsass year for all of us .

Laneymcg x

Sending love across the pond x x

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Most of you probably won't remember me but when I saw your names the warmth came flooding back. Charlie s, janner, barbie girl, bonnilea to name just a few. I'm so glad your still kicking mels ass. Just because I rarely pop by now, your all still very much in my thoughts. I'm just trying to get by without thinking of the beast too often, easier said than done sometimes as you all know. Well i just wanted you to know that you all remain in my heart in a very special place for being so helpful and encouraging when I first sought out mpip almost 6years ago. Thanks guys your all amazing. I wish you all a very merry Christmas and may 2012 be a kickmelsass year for all of us .

Laneymcg x

Sending love across the pond x x

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robbier's picture
Replies 11
Last reply 12/17/2011 - 3:14pm

Went to see my onogolist yesterday, still having issues with the recomendation of doing interferon alfa.  At the present time i am in remission according to the Doctor, there is no signs of cancer, so I having issues with doing something like interferon and the side effects.  So I amwaiting for the Dr. office to call me for my appointment with UAB (University of Birmingham).  This is just been a very hard decision.  Any suggestions from anyone would be appreciated at this time.  Thank You

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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newmanmark's picture
Replies 2
Last reply 12/17/2011 - 5:50am

I wanted to let everyone know that I will be 2 years NED next week (Dec 19th). There was a time that I thought my life was over. When I was initially diagnosed this board terrified me but many of the posts also gave me hope. I lived for posts from people who were NED. I want to share this same gift with others and provide some form of hope and support for the many who are struggling with a recent diagnosis. It was a very dark time for me but as time passes I am able to divert my focus from melanoma. I still think about it every day but the mental anguish and fear has definitely been reduced. While I was receiving treatment my wife was pregnant with our first child. I honestly thought that she would be my first and last and I wouldn't be able to see her grow up. Well, she's now almost 2 and we have another girl on the way. I try my best to continue living my life as I did before my diagnosis.

To all of you out there who are struggling, keep pushing forward and take one day at a time. Seek support in whatever form you need. For me, meeting with a psychologist regularly was better than any medicine.

Happy Holidays

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deeczar's picture
Replies 1
Last reply 12/16/2011 - 1:10pm
Replies by: Camp Host

Hi

Going to Md Anderson in a few weeks for isolated limb infusion..anyone  with experience with this? Any info helpful on what to expect ..Thanks Dee

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kjkaralekas's picture
Replies 5
Last reply 12/16/2011 - 9:57am

Hi--

I was diagnosed with Stage IIIB melanoma (Sept 2011) when a freckle I had removed from my nose (Jan, 2011--melanoma) had spread to a lymph node under my chin (the sential node biopsy didn't work). My PET scan came back negative. I had the lymph node with the tumor removed along with 30 other lymph nodes on one side of my neck (Oct 14). The tumor was encapsillated and no other melanoma was found in any of the other lymph nodes. I was asked to be a part of the clinical trial (ippy/interferon). With only a 7% chance of it helping and the fact my tumor was encapsillated (no breakage around it), I am hoping this could be the end of it. My local oncologist along with my surgeon understand my not taking part in the trial. I'm going on the 50% positive side that the melanoma could be cured at this point. I will continue seeing my dermotologist & cancer surgeon every three months, my oncologist at Mass General every 6 months and my local oncologist every 4 months. I have been taking a tablespoon of lemon everyday, vitamin D, exercise regularly, eating the super foods and lowering my alcohol intake. I'm hoping this will work. Has anyone out there had Stage III melanoma for years with no spreading? I'm hoping I'm doing the right thing. Any info would be appreciated.

Kelly

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JoshF's picture
Replies 5
Last reply 12/16/2011 - 6:45am

I had been dignosed with what my oncologist felt was primary dermal melanoma....meaning there was no leison on my epidermis. It is very rare and has typically a positive outcome. That happened in April/May...I had surgery to remove leison out of right cheek as well as sln biopsy which came negative. I went for my bi-monthly checks and all has been well. Had a CT Scan of Chest and Neck in November which came back NED. At a suggestion I went to see another Melanoma specialist a few weeks ago who suggested MRI of brain and CT Scan of Abdomen & Pelvis. Will have results on Dec 19th....Dr also said he might recommend Interferon Alpha 2 or Leukine....as an adjuvabt treatment for 1 yr. This is a little freaky...anyone tell me more about this? This is scary but I want to do all I can to prevent this from ever coming back.

Let's work for better treatments....for a cure!!!!

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AlisonC's picture
Replies 1
Last reply 12/15/2011 - 11:12pm
Replies by: lhaley

I was reading Lisa's post and wishing for the same for my friend David here in Singapore.  He is only 8 weeks post diagnosis of 3 brain mets (almost 3 years post stage IIIA) and he's having a really rough time.  He had a craniotomy for 2 tumours on Nov 1st and Gamma Knife on a 3rd a week or so later.  Since then he's had an awful time with bleeding, raised intracranial pressure and nausea/vomiting that have seen him re-admitted twice (and back at the hospital more than that).  It's brutal because I know he wants a great Christmas with his family and 3 young children. 

We have a satellite clinic of Johns Hopkins here in Singapore (which is where he's being treated) and he gets additional opinions from the Mayo Clinic.  Does anyone have any additional advice (even lifestyle, things to eat/drink that help) that might help him get through the pain and nausea ? and sleeplessness ?    They've done repeated scans and so far he remains NED (not counting the gamma knifed tumour which obviously is still visible) but he's just suffering such a lot.

Any advice appreciated and I'll pass it on....

AlisonC

StageIIIB

NED since 2001

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j.m.l.'s picture
Replies 5
Last reply 12/15/2011 - 9:44pm
Replies by: MariaH, j.m.l., Charlie S, Janner

Started on IPI for mel tumors. Now dr. see that inoperable tumor is growing. Not respond to IPI. Does anyone have any experience with Temodar? Dr. want to start that immed. Any information appreciated.

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MariaH's picture
Replies 12
Last reply 12/15/2011 - 9:34pm

My husband Dave is 2 1/2 years out from a Stage III melanoma diagnosis after interferon.  Last week my 30 year old brother (after severe abdominal pain and weight loss) was diagnosed with Stage IV inoperable singet cell cancer (still running pathology to determine where it originated).  He was transferred to Roswell (the room right next to where my husband did his LND recovery) where they said there was nothing they could do, and he will be coming home soon.

My problem is this - after 2 1/2 of years of positive attitude, my husband is paranoid that his will come back now.  He is taking this VERY hard (and trust me, he's a tough guy).  When my brother was explaining his symptoms, my husband admitted that he has had several of the same.  He goes back for his 6 month check up on June 10, and is now asking to have scans done.  I don't know what to do to help him  - he is scared that he will be in Mike's shoes someday, and so am I.

Also, if there are some websites for us to help with my brother's prognosis (care networks or such) that you have used to help you through "end of life" issues, I would appreciate it.  It is very hard to stay positive for my husband and let my emotions out with my brother (who is borderline mentally retarded and lives with my parents).  I feel lost, overwhelmed, angry at the docs, scared that Dave's will come back - I'm a mess.  And I just need to vent.  I'm sorry, I know this may not be the board to post this on, but it was so supportive when Dave was first diagnosed, and I haven't found another with the support and love this one has.

Maria

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deeczar's picture
Replies 4
Last reply 12/15/2011 - 9:34pm

Hi

Going to Md Anderson in a few weeks for isolated limb infusion..anyone  with experience with this? Any info helpful on what to expect ..Thanks Dee

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hope4cure1's picture
Replies 5
Last reply 12/15/2011 - 5:06pm

    Hi everyone.  My husband's PET and CAT were still clear today. Last January he had 4 mets to liver, and 2 lymph nodes in his chest ilit up.  He started on a Carboplatin/Abraxane/Avastin combo.  He tolerated the treatments well and was able to ski most of the season.  In June, he stopped the Carbo due to a reaction and continued with the Abraxane/Avastin.  In July, his scans were clear.  September they were clear.  He stopped the Abraxane in September.  The scans today were the first "flying solo" with Avastin, and again the scans were clear.

     Chemo might not be for everyone, and might not have a high response rate.  However, I wanted to give some hope to anyone whose doctor has suggested chemo as the next step.  It isn't necesarrily the "last step".  This was my husband's first line of treatment, after sugery to remove lung mets in late 2010.   My husband is BRAF negative.  He was just tested for NRAS.  Dr. Boasberg wants that info in case we need to consider an inhibitor in the future if the Avastin is unable to hold the line. 

     All I know for sure is that I am incredibly grateful that we are celebrating another Christmas with our family.  I wish a peaceful holiday season for everyone who has been touched by illness and loss.  Although I haven't met any of you, I feel like I know you through your posts and hold you in my prayers.

Hope

Become what you admire.

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