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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Melanoma Mom's picture
Replies 9
Last reply 11/19/2010 - 7:43am

Today we travel to Dana-Farber to find out our 14 year old son's staging and treatment suggestions. It has been a long road since September 1 getting to this day. Praying for good news! Be sending good vibes at 1:45pm!

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Dynasysman's picture
Replies 6
Last reply 11/18/2010 - 10:26pm

Going to see ONC SURG for first time to discuss left neck posterior dissection for T2 N1 M0 lymph node removed last Thursday. Reviewd pTh report to be ready -- report reads too much like textbook mucosal melanoma for my comfort.

Anyone have any questions I should be sure to cover tomorrow? Articles/websites to read? Good non-denominational prayers?

Thanks.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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King's picture
Replies 48
Last reply 3/10/2011 - 5:15am

Sometimes, one hesitates to post the great news when others are deep in battle.  My reason for posting is to give others hope that is so essential in battling melanoma.

I was at Moffitt today to get the results of the CT of the neck, thorax, abdomen, pelvis and the MRI of the brain that I had last week.  There is no evidence of melanoma!  I had advanced to Stage IV in 2005 with liver metastasis.  I had a major recurrence in 2008 with a peri-pancreatic tumor and a sub q.  I've not had a recurrence since that time.  I think most of my success has been because of my very aggressive surgeon but who knows?  So many factors probably play into it.

I wish everyone could be as fortunate as I have been.  I thank everyone on this Board for their support and friendship over the years.  There are times that I would have felt so alone without the people on this Board.

Stay Strong
King/Kathie

Stage III 2004 Unknown primary

Groin Lymph Node Dissection 2004

Interferon 2004-2005

Liver mets 2005 (4.5 cm tumor)

Liver resection (70% of liver removed) and Gall Bladder removed 2005

GM-CSF   Phase II Clinical Trial 2005-2006

Peri-pancreatic tumor, sub q on buttock/hip 2008

Extensive surgery to remove both 2008

Have been NED ever since

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lhaley's picture
Replies 17
Last reply 11/18/2010 - 5:27pm

We always tell people that just because you have a new symptom it doesn't mean it's melanoma. Then it happens to you and automatically mel is the first thing I thought about.  I've been having headaches, lightheadedness, memory issues ect.  I did have a traumatic brain injury about 6 months ago but it had gotten better, then went back to issues again.  But, the MRI I had yesterday was clear!! 

I didn't realize how hard it was to admit to the oncologist that I was having problems. Denial was easier to deal with!

By the way, don't ever put a paper shredder on a top shelf. The motors do fall off when reaching to get it down!!  Even though I still don't feel great I am greatly relieved!

Linda

Stage IV  NED 1 month  PET scan Dec. 7th

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MaryMary73's picture
Replies 11
Last reply 11/21/2010 - 11:32pm

I had my excision done on Nov 4th. Stitches come off tomorrow at 8:15am EST and my plastic surgeon will let me know if my margins were clear (is that what it's called?). I'm hoping and praying. The only thing keeping me from going insane is that my tumour was kinda small. On the Breslow scale, it was 0.39mm and very slow growing.

I have to say that this has been ONE HECKUVA journey. From thinking "Melanoma? C'mon!! Not me...I am not a sun worshipper!" to "Melanoma? What the hell are you talking about??? You must be joking!!! How the f**k did I get melanoma???".

In my opinion, skin cancer in general is promoted as being caused by the sun so whoever doesn't sit and bake for hours on end is basically immune to this crap (pardon my language).  At least that's what I thought. Boy was I wrong. I guess it's like any other shitty (excuse my language again) cancer or disease...how many people die from lung cancer that never smoked a day in their life...how many people die from cardiac arrest even though they took care of their bodies, ate well, and exercised on a regular basis...how many people die from liver disease yet were not alcoholics...

What really grinds my gears is that it is so easily treated if caught early yet so many people ignore that "ugly duckling" mole...or like me, didn't even know the damn thing was there. Us women are always told to check for lumps in our boobs as soon as we hit our mid-twenties and to make sure we get our Pap smears done once yearly as soon as we begin having sex yet no one bothers to tell us to check our beauty marks/moles. Men are told to get their prostates checked as soon as they hit 40...no one bothers to tell them to check their beauty marks/moles.

Everyone is told to monitor their blood pressure. Everyone is told to eat healthy and exercise regularly. Don't smoke. Don't drink. Eat organic. Yet we are NOT told to always keep a watchful eye on the largest organ we own. We make sure we pluck it, wax it, shave it, laser it, Botox it, liposuction it, moisturize it. Meanwhile, a tiny little abnormal mole will throw a monkey wrench into our lives and send us on a journey that we really never thought we'd ever have to face. At least I never thought so.

The only real wisdom is knowing you know nothing -Socrates

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dian in spokane's picture
Replies 3
Last reply 11/18/2010 - 9:16am
  UC Berkeley Junior, 20, Dies After Battle With Melanoma
 Jenna Bockmiller

Jenna Bockmiller
 

By Jeffrey Butterfield
Contributing Writer
Wednesday, November 10, 2010

Described as an avid indie rock lover, an active sorority member and an unfaltering friend, UC Berkeley junior Jenna Bockmiller died after a six-year battle with melanoma on Saturday. She was 20 years old.

Friends said Bockmiller, a sister of the Delta Delta Delta sorority and intended psychology major, pursued her interests, including her devotion to music, despite the significant burden of frequent doctors' appointments and treatments for her illness.

"She had the best taste in music," said Delta Delta Delta President Joyce Chang. "She was the one who introduced me to Coachella. That says a lot."

According to UCLA junior Piper Akol, Bockmiller taught herself to play guitar and piano and would spend time helping with her brother's band as well as attending and working at concerts. She said Bockmiller got to meet the Strokes - one of her favorite bands - through the Make-A-Wish Foundation.

Akol, one of Bockmiller's best friends since middle school, said Bockmiller did not allow her illness to control her life and was able to complete all requirements in time to graduate with her high school class despite the time restraints of being a melanoma patient.

"She was very resilient," Akol said. "She was not dealt a great hand in life. Most people don't have to deal with this ... But she didn't complain. She was honest, enthusiastic, funny, everything a girl could want in a best friend."

Friends said Bockmiller demonstrated her dependability and enthusiasm through her participation in her sorority.

"Even if she was tired and wasn't feeling that well, if she had committed to helping out at an event or something, she was there and she helped," Chang said.

Bockmiller's battle with cancer began when she was diagnosed at age 14, toward the end of eighth grade. Radiation treatments damaged her spinal cord, making walking difficult and running impossible, impacting her love for athletics like track and field. She was in remission for about four years before relapsing her freshman year at UC Berkeley.

"I felt like she was wiser about everything, about life in general, because of her experiences," said UC Berkeley junior Eileen Libove. "Jenna never let petty things upset her."

In 2008, Bockmiller received a Courage Award from the Melanoma Research Foundation. Melanoma survivor Suzanne Lescure, who met Bockmiller through the foundation, said Bockmiller's mother was extremely involved with the foundation and dedicated to helping her daughter overcome the cancer.

On a personal online fundraising page that encourages donations for the Melanoma Research Foundation, Bockmiller wrote earlier this year about how her illness changed how she perceived her life.

"I have an appreciation for life that many other people my age don't," Bockmiller wrote. "I look at every day as a blessing and the things that I do, no matter if it's something I want to do or not, is something I get to do, and am therefore grateful."

Bockmiller's memorial service will be held on Nov. 13 at Moraga Valley Presbyterian Church at 11 a.m.

Tags: JENNA BOCKMILLER, DELTA DELTA DELTA

 
 
 
  
 
 
 
  
 
 
 
 
 
 

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Anonymous's picture
Replies 1
Last reply 11/17/2010 - 8:10pm
Replies by: glewis923

I have been watch for a post by Kevin. I know that his scans after IL2 treatment were disappointing.

I have been away from the board a few weeks so I am praying that Kevin is doing OK.

Would appreciate anyone posting to let us know how Kevin is doing.

Thanks.

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molly's picture
Replies 7
Last reply 11/18/2010 - 11:36pm
Replies by: JuleFL, ValinMtl, Sharyn, Tim--MRF, lhaley, King, Anonymous

Sherron ask that I post for her and let you know that Jim was admitted to the VA Hospital yesterday and received blood transfusions. Jim is very weak and Sherron is not sure when he will be allowed to go home. She is waiting for the doctor to make his rounds this morning. The doctors told Jim he will need transfusions every 2-3 weeks. Sherron ask that you please keep them in your prayers.  

Thank you for your care, concern, and support.

molly

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ValinMtl's picture
Replies 6
Last reply 11/18/2010 - 12:46pm

Well, I did a beautiful wipeout in front of the hospital, tripping on my shawl...hitting my chest on a jutting out cement pillar, then landing on the knee, of course the monster leg with lymphedema. I certainly had loads of attentive people around me, embarrassing plus! As I was falling all I could think of was please don't cause any delays in treatment but I was able to make it to the oncology ward in a wheelchair!. So I sit here very sore today.

Had my 4th treatment yesterday.  The good news, doctor is seeing a noticeable difference in the tumors, some are actually drying up and the purplish motling on the leg is diminishing, now I have to wait for a scan.  I almost didn't get the treatment as my platelets are very low but since it was my 4th treatment and not 3rd the doctor decided to go ahead with it (he warned me no falls, no aspirins)...will now have to visit CLSC about a mile from my house for blood tests each week until platelets improve (beats travelling to the hospital which is about a 1 1/2-hour drive).

Now my question for the ipi warriiors: I have now had 4 treatments,and a scan in 2 weeks and another scan 12 weeks after that, at that point they decide whether there is a need to continue, or not (wouldn't that be nice) OR of course, if it doesn't work then on to another treatment.  There is a 3-month wait between ipi rounds, is this the norm?

So, just to update those planning on ipilimumab..cutaneous tumors have certainly stopped spreading on my leg (I had 100s after waiting about 5 months for trial to come to Montreal), most are not raised but rather 'flat' now, and some are dried up (yehh!). Praying I get good results with my scans. I really haven't had any significant side effects, a few slight headaches in the beginning, a touch of fatique and inappropriate gas.

 

Val

Live Laugh Love Nothing is worth more than this day!

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Laurie from maine's picture
Replies 7
Last reply 11/17/2010 - 11:41am

hi,

I had hoped to go to the melanoma symposium last night but couldnt make it down from Maine.  Did anyone go?  I really like Dr Lawrence and Dr Hodi and would be interested to hear how it went and if any new info was brought up.  I was also hoping to run into people from this site, oh well.

thanks

laurie from maine

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MaryMary73's picture
Replies 17
Last reply 12/23/2010 - 2:22pm

I live in Canada (Toronto to be exact) so our health care system is quite different from the US. The actual medical care in Canada is basically the same as in the US but we are not charged for any medical procedures or surgeries (including staying in the hospital for any length of time, medications received during the hospital stay, etc etc) that we have done (unless it is cosmetic). We do pay for our own medications but for those of us who have insurance coverage through our employers, we are usually covered from 80% to 100%.

In the US, I know it is very different. What happens if someone suspects he or she has melanoma and they do not have insurance coverage? How much would it cost for a visit to a family doctor? A dermatologist? A biopsy to see if a suspicious looking mole is melanoma? Surgery to remove healthy skin around the melanoma (once diagnosed) in order to attain clear margins?

Maria

The only real wisdom is knowing you know nothing -Socrates

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jnaakins's picture
Replies 9
Last reply 11/17/2010 - 9:10pm
Replies by: Janner, Anonymous, jag, jnaakins

I am asking because I recently had a large melanoma in situ removed. I am more than usually concerned because I lost my brother in February to Melanoma. I know the statistics say that the "cure" for melanoma stage 0 is surgical removal, but Im wondering what the odds are of it coming back, with my family history?

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killmel's picture
Replies 2
Last reply 11/17/2010 - 11:38am
Replies by: Anonymous, bcl

Hi Linda,

 

Any update on how Cass is doing. We all responded a few months ago whe she need help. Would appreciate know if our prayers are working for her.

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Springbok's picture
Replies 3
Last reply 11/16/2010 - 12:19pm
Replies by: Lori C, dian in spokane, Anonymous

I went to a talk here in Calgary, a few weeks ago, in which the Gerson approach to health and curing cancer was promoted. SInce then , I have found a number of other clinics in Europe, Mexico and North America (eg. the Hippocrates Health Institute in Florida) which practice similar "treatments" - usually lots of natural juice, strict diets, and enemas aimed at purging the body of toxins and cancer cells (or starving the cancer cells).

The Gerson Institute, in particular,  makes some specific claims about improving the prognosis of those with Melanoma. However, there are a number of rebuttals of their claims on the Internet from the established medical profession , including teh American Cancer Society.  These note that none of the Gerson claims have been proven by peer reveiw or experiment.

No doubt these clinics charge an arm and a leg for treatment, with questionable results (though a fresh juice diet can't hurt).

I wonder if the board members have any personal experience with these clinics, because drinking a glass of fresh juice every hour sure sounds  preferable to  engaging in "chemical warfare" and surgery that the cancer hospitals of the world promote?

 

Springbok

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davekarrie's picture
Replies 1
Last reply 11/20/2010 - 11:00pm
Replies by: kellie1979

After reading my path report a bit more, the initial stage is set at Ib, T2a with no info yet on N or M.  Therefore, there is a good chance that the melanoma did not spread, right?   I go to mayo clinic next week for consult on 24th and surgery on 26th.  I do have a few more suspicous moles they will need to look at though, but the more I read about stage I the better I feel.  My path report does mention occasional mitosis, so not sure what that means. I am also at Breslow depth 1.5mm and clarks 4. thanks.

Live life to the fullest and enjoy each day!

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