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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HelperDaughter's picture
Replies 1
Last reply 1/10/2012 - 4:25pm
Replies by: Kelli100299

An update.  My mom had the resection on her small bowel.  My mom's surgeon told us that the tumor was the size of an apple and three pathologists (or three labs - not sure which) were fighting over it.  He said they were going to see if there was anything they could do for her based on the tumor.  I'm hoping he means looking to make a tumor vaccine, since we already know my mom doesn't have any of the "good" mutations.  I didn't exactly press for this info, though, because thinking that there's a bunch of paths out there looking to help us leaves the door of hope open in an otherwise grim situation. 

So my mom is trying to get back on her feet - surgery was four days ago.  She felt great Day One after surgery (all the pain meds, probably), and like hell days 2 and 3.  She looked a little better yesterday, and I did not get to see her today.  Her kidneys were apparently being stubborn, however, and she put on like 10 pounds of water weight that they are giving her Lasix to take off.  She was only like 104 lbs prior to surgery (and 5'2" - teeny tiny, but about 20 lbs short of her usual plump self). 

My dad said she slept most of today because the Lasix makes her tired.

Anyway, my mom's nausea and vomiting is gone, and the bleeding from the tumor has stoped.  Her bowels are starting up again.  Her hematocrit is stable, which means no internal bleeding.  All very good things. She's on an unrestricted clear fluids diet, and hopefully will advance (and put some of that weight back on - I can't help but see how skeletal her face looks).

I found out my mom had cancer in July 2011 and went shopping with her then.  I didn't get back to see her until October, at which time she was too sick from the bowel tumor to do much of anything. 

I just want to go shopping with her again - just one time.  Please, let this be the trick.  She has to get a little luck.  Her tumors did not shrink on ipi, the brain mets make her ineligible for the trials, and she doesn't have any mutations that anyone's studying, apparently.  I'm encouraged that the surgeon apparently thought she had enough left in her to make this rather difficult surgery worthwhile.  the melanoma specialist, however, told her not to do it and, basically, to keep being miserable, nauseous, vomiting, tired, bleeding internally and taking 2 units of blood each week just to keep her head above water blood-wise until she died.  Sorry, but that's the long and short of it.  He recommended Temodar instead of surgery.  he said it had a 10% chance of reducing the tumors and a 50% chance of keeping them stable.  that's worse than a coin toss.  But, the surgeon said he recommended the surgery, and deep-down, we felt it was right.  Maybe it's just a "cut it out" mentality, but I don't see how removing a tumor the size of an apple can NOT improve the situation.  bulk-wise, it's literally removing probably 2/3 of the cancer from her body.

My thoughts are with everyone tonight.  I see that some people have lost loved ones around the holidays.  I'm grateful i got to spend christmas with my mom and i'm hoping for another.

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Richard_K's picture
Replies 6
Last reply 1/10/2012 - 2:39pm

I had scans taken yesterday and got the results today.  Scans were good and I will be cintinuing in the phase II of a clinical trial for Zelboraf.  Starting my 23rd month in the trial.

Dick

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Register and find out more here: https://www1.gotomeeting.com/register/271562473 

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KRob's picture
Replies 2
Last reply 1/10/2012 - 10:40am
Replies by: fdess056, CLPrice31

Friends of MPIP:

I have been speaking to groups and organizations on sun safety and the need for research support for MRF for the past 3 years. I speak to many age groups, but most of my upcoming talks include mainly teens at local area high schools. Usually I organize my talks with high schoolers starting with a brief bio of my own experience as a mel survivor then quiz my audience on their knowledge of melanoma followed by a video presentation of a young victim of melanoma, Mollie Biggane. My talks usually end with skin and sun safety tips followed by a question/answer period.

While this format works for the most part, I have found that my teen audiences, especially, are most curious about people closer to their own age who have melanoma (I do share a couple of stories of young people from our area). Obviously, the shock of the realization that it is the 15-25 year old age group who is most seeing an increase in mel cases catches their attention.

What I would like to add to my talks are more personal, current bios. of  MELANOMA  fighters who are willing to share their stories along with a few pictures. For example, I share pics of my many scars and photos that were taken of me during treatments such as gamma knife. I also have post-craniotomy pics that include my almost unrecognizable steroid self, which always shocks them. But I am going on 48 so my story still may not have the impact I wish to have.

These are the sort of stories and pics I'm looking for if any of you are willing to share them.  It's a great way to get the word out about melanoma, and I would be privileged and grateful to be able to share your stories with young people in the hope that it might help them to lower their risk and increase their knowledge of how melanoma may affect their lives.

I know that people are hesitant to share their real names or pics, so if it's anonymity you wish I can just use your first name and get a basic photo release that your pics will not be used for anything other than these presentations. Please contact me at my email: jellybean6483@yahoo.com with questions or stories to share.

Any other suggestions about how I may better go about this process would also be appreciated.

Thanks so much!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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panda's picture
Replies 2
Last reply 1/10/2012 - 9:56am
Replies by: Janner, Lauri England

Hi, i have been on here not long. It is very interesting reading everyones stories. It is encouraging seeing what wonderful support there is for each other on here and it is very uplifting... Anyway Happy New Year!. it IS only ten days into the new year so positivity!!!

My question is this. I was diagnosed with a melanoma last jan and had it removed from my back. Clark Level II. I have ANOTHER mole , which i got checked in the year two thousand... It is in an area that doesnt see much light of day, so never bothered giving it much attention ever again.(as i didnt know much about melanomas back then) i now find, since i had my last check up, that in the last ten years , it has grown significantly in size from a tiny pin prick size (of about ten pin heads or something) to now the size of the end of my little finger.

 

Is it a worry if moles grow? i went to get check up three months ago, and she said, we will take a photo and see if it grows in the next threee months until you come back and see us again? Well what the heck does she mean? its been growing for ten years??????? I find that VERY concerning

 

Is that concerning??? Should i be getting this mole tested?? They dont seem to think it looks funny in colour... but i am just wondering???

 

Also, what does a CT scan involve. I read a lady on here gets them every six months.... do they involve going in that thing that goes over your head where you feel claustrophobic??? sorry, but seriously, i have heard about those things. sound terrible? are they terrible.  Just making sure, that i never have to end up going thru that.

Thanks for reading. All feedback and opinions much apprecitated.

thanks

Felicity (panda)

today is a gift and thats why its called the present

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Hi, i have been on here not long. It is very interesting reading everyones stories. It is encouraging seeing what wonderful support there is for each other on here and it is very uplifting... Anyway Happy New Year!. it IS only ten days into the new year so positivity!!!

My question is this. I was diagnosed with a melanoma last jan and had it removed from my back. Clark Level II. I have ANOTHER mole , which i got checked in the year two thousand... It is in an area that doesnt see much light of day, so never bothered giving it much attention ever again.(as i didnt know much about melanomas back then) i now find, since i had my last check up, that in the last ten years , it has grown significantly in size from a tiny pin prick size (of about ten pin heads or something) to now the size of the end of my little finger.

 

Is it a worry if moles grow? i went to get check up three months ago, and she said, we will take a photo and see if it grows in the next threee months until you come back and see us again? Well what the heck does she mean? its been growing for ten years??????? I find that VERY concerning

 

Is that concerning??? Should i be getting this mole tested?? They dont seem to think it looks funny in colour... but i am just wondering???

 

Also, what does a CT scan involve. I read a lady on here gets them every six months.... do they involve going in that thing that goes over your head where you feel claustrophobic??? sorry, but seriously, i have heard about those things. sound terrible? are they terrible.  Just making sure, that i never have to end up going thru that.

Thanks for reading. All feedback and opinions much apprecitated.

thanks

Felicity (panda)

today is a gift and thats why its called the present

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mygirlmaddy's picture
Replies 16
Last reply 1/10/2012 - 5:17am

After a non-stop battle of almost two years, my husband died the day after Christmas.  Despite repeatedly having unsuccessful treatments, he never gave up.  He had a treatment just one week before succumbing to an infection and was practical joking just days before.   If he were here to talk to all of you, he'd tell you he didn't regret trying every possible option and maintaining hope for himself and our daughter and me. 

Thank you for all of the support I have found on this site.  The human spirit continues to amaze me.  My wish for all of you is peace with whatever your path is and the courage to take it.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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emilypen's picture
Replies 14
Last reply 1/9/2012 - 11:32pm

Hi All,

After  over 3 years of fighting this dreadful disease it's finally won the battle.

Last Saturday Jason lost any feeling in his legs suddenly and after being rushed to the ER we discovered through MRI that a tumour in his spine has compressed his cord beyond repair. With all the previous surgery and radiation there is nothing more they can do.

4 clinical trials, 2 rounds of chemo cocktails and a lot of radiation to his spine and brain and we're done.

Strangely he said, it's a relief to finally know what comes next.

My doctors are going to try and deliver our baby 3 weeks early ( first week of Feb) so he will hopefully have some time with him before he dies.

We're home now with great hospice care and spending some time together.

thanks for al your support over the last few years, keep up the fight. I truly believe that this disease will be cured sooner than we think.

 

Emily

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robbier's picture
Replies 2
Last reply 1/9/2012 - 10:30pm
Replies by: Charlie S

Went today for the second opinion to UAB in Birmingham, saw Dr. Conry at Franklin clinci, and for now he states I don'thave to do interferon alfa chemo therpy.  Yippee,  Will be followed and go for the testing PET/CT scan every 3 to 4 months.  Seems I am in remission and the cancer can not be found , and I thank God for this.  So now I start the program of taking tests, and letting the Doctors follow me.  Excited about the fact that there is no cancer at this stage . 

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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Phil S's picture
Replies 4
Last reply 1/9/2012 - 8:56pm

Quick background, Phil was diagnosed with mucosal melanoma two years ago, became Stage IV with lung mets in July, and then a brain tumor the end of September. Phil had craniotomy and WBR and I got us to MD Anderson in November, he has completed two rounds of biochemo here in Texas. Yesterday, we learned the wonderful news that his scans show stable brain MRI, and his CAT scan shows significant shrinkage on all his body mets, the doctor was thrilled, we are too! When we got to Houston in November, Phil's cancer was spreading fast and the doctor said to us, we need to change its direction, so we feel that direction has definitely changed for now! Phil just started his 3rd round of biochemo, and feels motivated to get thru this tough treatment now that we know it's working. He only really complains about fatigue, but I tell him that's totally normal between brain surgery, radiation, and biochemo. He still is able to work a little over one week in each 21 day cycle. So, we fight another day, and keep in mind all the warriors we have lost and all those currently in the battle right along side of us! God Bless and Happy New Year! Valerie (Phil's wife)

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Erica A's picture
Replies 9
Last reply 1/9/2012 - 5:41pm

Just checking in with the community to provide hope in the New Year.  My husband Ken continues to be cancer free, will be 7 years NED from Stage IV this June!  Ken has been enjoying a normal cancerfree life with only a yearly chest xray and bloodwork as a reminder of his status.  You can have a lasting remission from stage IV melanoma - there is always hope! 

All of Ken's info is in our profile, but as always feel free to email us with any questions or for support.

Wishing everyone a wonderful and hope-filled 2012! 

Erica & Ken heart

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renakimu's picture
Replies 7
Last reply 1/9/2012 - 4:31pm

hello all!

first of all i want to wish you to have the best year ever!!

yesterday my mum told me that she has pain under and around the armpit that she had the full lympadectomy, 

(the doctors told as tha they got out 10 lymphs, arent they few for full lnd?)also she feels at night that her breast it getting swolled, what that coulkd means?i d like to say that she dont have lemphydima in her arm.

thanks a lot for any answer!have a nice weekend!!!

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Tracy Chicago's picture
Replies 4
Last reply 1/9/2012 - 3:08pm
Replies by: mantonucci, Sherron

My friend's father is on hospice at home and his poor wife is having a terrible time managing all of it. Hospice told her that she needs to administer her husband's morphine on the hour (24 hours a day)! How is she supposed to get any sleep? And the nurses are supposed to call her to tell her who the next nurse is that is coming, and they don't call her. They sent a "nurse" to sit with her husband through the night but the "nurse" is not licensed to administer the morphine every hour so what good is she?  Also the pharmacy hospice works with has screwed up his medications by not delivering them on time (in fact they admitted they never filled his prescription even after she call to ask about it several times). Hopsice is pushing her to move him to their facility but she promised her husband she would let him stay home and she is not willing to break her promise.

Is there any advice you have for my friend's mother? Is there someone she could complain to so that hospice steps it up? This poor lady is so tired and feels like she is getting nowhere.

 

Thanks,

Tracy

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94z28joe's picture
Replies 13
Last reply 1/9/2012 - 2:54pm

I had a mole in my top ridge of my ear that was starting to change. I went to the derematologist to have it looked at and removed. Two weeks later 10/20/2011 I got a call confirming my fears it was melanoma. I was set up with a doctor at the Windship Cancer institue in Atlanta to have a the WLE and SLN. Well 11/20/2011 I got the news that they had found microscopic meleanoma in the SLN. The depth of the tumor on my ears depth was less then .95 and the oncologist said he didnt expect it to have spread but they wanted to check to be sure. I'm glad they did but know I'm scarred as Hell I have to small children ages 4 and 9 and I'm only 33. I had just started I new career in Atlanta last october moving from Knoxville and bought a new house and looking foward to the future and all of the sudden bam I was hit with the reality of the future being shorter then I had expected. So, now im left waiting for the medical oncologist to call. So, we can talk about the options after the remove all the lymph nodes in that area.

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jmmm's picture
Replies 4
Last reply 1/9/2012 - 2:48pm
Replies by: Tiko, Charlie S, Cooper

We are going to travel from St. Louis to Chicago (about a 6 hour drive) for a consult and hopefully a trial. If my husband qualifies, we'll be heading up there every 2 weeks or so. How do people afford to do this? We checked with the American Cancer Society and they have a hotel we can stay at for $50 a night..no Hope Lodge, Joe's House, etc., plus $57 parking per night. So, we're talking $250+ per visit with gas and food. With no income at this point, we're not sure how we'll be able to afford it. I'm sure my mom will help us out, but we're wondering if there are other resources that might help with gas, food or lodging.

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