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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Becky's picture
Replies 8
Last reply 11/19/2010 - 7:56am

Whew!! Ben's latest Pet Scan was a-ok!

As a recap..dx July 09 just before his 21st birthday, melanoma on tip of tongue. WLE and SNB showed it had spread to one node. Right neck dissection, 8/09 then a year of interferon. July's pet showed 3 suspicious spots which the doctor today said had either disappeard or diminished enought that were not significant.

And I am one relieved mom!

Thanks as always for the amazing support here

Becky

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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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Hi, I haven't posted or responded to any posts for a long time.  Derek has been on a trial since he progressed to stage IV, randomied into the chemo arm for a right hilar node.  We have been concerned about two spots on his ribs that are now nothing, although he tested negative for BRAF he is positive for NRAS, and a third opinion from a cardiothorastic surgeon saysthe node is resectable with 20% complications.  We also should find out whether the DTIC is doing anything in a week and a half.

I returned to teaching in September after mat leave with my second child. We have a 3 and half year old and an 18 month old.  I just found out I was pregnant again.  Not to be too speciifc but it is diifciutl to see hopw this happened, since the spring Derek has had surgery and treatment and nerve problems so there wasn't much chance to get pregnant and I was on the pill, but here we are. 

We are trying to decide what to do and I need some advice.  Derek has said he is not sure he can physically handle another baby and that emotional it is so difficult to look at the two we have now and know there is a very good chance he may not see them grow up let alone to rbing another into the world he may not know and of course we are both concerned, him more than me about how 1 parent can bring up 3 children.  Financially we are good, our parents live in town but are in thier 60s already.  I know this is our decision but I am having such difficulty and needed to hear what other patients and caregivers might have to say. 

 

\Thank-you for responding

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NicOz's picture
Replies 9
Last reply 11/19/2010 - 12:24am

Love, love and adore my neurosurgeon. Was in hospital for 24 hours, from peri-op to discharge. That beautiful man removed a tumour (unfortunately it had to be done via a new hole in the head, but it's all good) and managed to stabilise my head without a single pin hole :) yay for me! It was termed a "mini-craniotomy". Sounds insignificant... and I like that :D

Of course, it's the worst haircut I've ever had, but eyebrows remained even, so one can't complain too loudly, eh? They sliced the temporalis muscle to get in there, and I HATE that, but it's ok. Getting less sore every day. Most importantly, it seems I am right to roll for G's dance recital in a couple of weeks :D

I had a mixed bag of results this time around. I have had a couple decrease in size, but have a few (3?) new mets, one of which is close to the thalamus and will be back to have SRS on that fairly soon so I'm told. It's causing a little bit of left sided weakness and numbness, but is surely do-able at the moment. Physio told me it is a little weaker than the right side, but still very strong, so that's ok.

They are still pushing full steam ahead to treat me, and as long as they're doing that, I am one very happy camper!

Life is good

xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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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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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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MaryMary73's picture
Replies 13
Last reply 11/18/2010 - 10:08pm

Saw the surgeon this morning. Good news!!!!!!!!!!! Melanoma-free!!!!!! He said the sample contained no microscopic abnormal / melanoma cells. I even asked to read the report....jusssssssssssst in case. I'm at home now...sitting on my couch...and exhaling for the first time since Nov 2nd.

Thank you all for your kind and thoughtful prayers.

smiley

The only real wisdom is knowing you know nothing -Socrates

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dherndon's picture
Replies 0

Has anyone been onthe MEK Trail

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davekarrie's picture
Replies 2
Last reply 11/18/2010 - 7:55pm
Replies by: ChristineL, lhaley

I was diagnosed last Fri with Breslow depth 1.5 mm and Clarks level IV. I have my path report and it says on there that I am a stage Ib, t2a so far. Does anyone know exactly what that means.  I have mitosis of 4/mm2, no ulceration, no regression, no tumor infiltrating lymphocytes. it does say radial and vertical margins negative, so that sounds good I think.  Just hate waiting and want to get the WLE and SLNB next Fri most likely. Do folks think they will do the SLNB and how long of a surgery in my case?  Thanks for any help/insight.

Live life to the fullest and enjoy each day!

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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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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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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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2atlascedars's picture
Replies 5
Last reply 11/18/2010 - 8:46am

I am scheduled for a SNB and WLE (with skin graft) on my acral lentiginous melanoma on my heel this coming Friday (diagnosed 10/26), and I am finding it difficult to ensure that I will be covered by my insurance for my upcoming procedures.

Here are the details:
I was referred to a cancer center by my dermatologist (who is in my insurance network...Aetna), but only 1 of the three doctors caring for me at the cancer center is in my insurance network. I called the insurance company and they told me to have my dermatologist file a referral and pre-certification for the other two doctors. I did this, but the dermatologist's office staff told me that they should only have to provide the referral (which they have already done). They said that they are not prescribing the surgery, so they shouldn't be involved with the pre-cert. I also spoke with the Managed Care Representative at my cancer center and she said that if one doctor at the center is in my insurance network, then they all are because they use the same take tax code.

So...I have spoken with 3 different individuals involved in my care and they all said something different.  

Does anyone know the best way to handle this so I don't wind up with massive un-covered medical bills following my treatment and procedures?

Thanks,
Mark from California

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Lauren mom to Jenna's picture
Replies 42
Last reply 11/18/2010 - 12:22am

I am very sad to tell you that Jenna passed away over the weekend at the age of 20. 

She responded beautifully to the BRAF/MEK combo.  We could watch the sub-qs shrink and disappear.  The internal mets were reduced to about half the size by her first CT scan.  She was feeling so much better, but starting to get some headaches.  An MRI was suspicious for leptomeningeal mets, but not conclusive, and an LP came back without any melanoma cells, so we were able to continue on with the trial and double her dose in hopes that we could get enough of the drug into her CNS to control whatever was going on.  With the addition of some new meds to help decrease the intra cranial pressure, it was under control for the most part until last Tues. A new MRI showed both lepto mets and multiple small brain mets.  A multiple location, simultaneous hemorrhage of these small mets took her out of the cancer.  Our neurosurgeon said he had never seen an event like that before.  We can only attribute it to the mercy of God as He continued to have his hand on Jenna through this entire 6 1/2 year process. We experienced a lot of joy, and made the most out of every experience.  I am incredibly blessed to have been able to see her through, and learn from her amazing attitude.  She would joke that she felt like the knight in Monte Python's Holy Grail movie that keeps getting appendages chopped off yet continues to yell at his opponent "come back and fight, this is just a mere flesh wound".  Well, melanoma may have continued to reduce her life, bit by bit, but she did not let it take her spirit, and she lived her life with grace and enthusiasm until the very end.

I know that there has been a lot of discussion on the board about the BRAF and inhibitor drugs and whether or these drugs cause the disease to go to your brain, creating some fear in doing these trials.  It is my understanding that if you get the opportunity to fight melanoma long enough it will probably find it's way to your brain.  In Jenna's case, she had such extensive disease before we could get her an opening in the trial, that it had too much of an opportunity to get there.  These drugs are amazing, they can give you your life back quickly.   Without question, the best available treatment, and we should collectively be fighting to get more trials open and cut through the red tape.  It is hard enough fighting cancer, but fighting "the system" to get a drug that you know can extend your life (living) is just too cruel.

 Thanks to all who post links to research and share their stories and support here.  Your dedication to the board and one another carried us farther down the path than we thought we could ever go.

Fight On!!

 

Lauren mom to Jenna

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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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