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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laurieformike's picture
Replies 21
Last reply 5/17/2012 - 12:02pm

It has taken me many weeks to be able to post on the board.

He was going to have more radition on March 7th, but before the went to do Cyber Knife Surgery they wanted to do another MRI. After the MRI they enformed us that he was much worse that the week before, so they felt it would only make him even more worse. So instead he left the hospital to come home for the end of life. Although there was a slight possibility that the Zelboraf would still work, it was hard to realize that it wasn't helping the brain, because it had helped so much in the liver, lung,and limp nodes!

RIP Cigar Mike 4-3-2012. He made it to his 55 Birthday, 3-25-1957. LOVE YOU FOREVER,

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Anonymous's picture
Replies 1
Last reply 5/11/2012 - 9:57am
Replies by: NYKaren
Eileen L's picture
Replies 5
Last reply 5/11/2012 - 7:08pm

I am so ecstatic! Just got off the phone with the trial coordinator. I will be starting the Genentech Braf/MEK trial on Thursday of next week. It has been a crazy three months for me but I feel I am finally on the right path. Thx to everyone on this board for your encouragement and suggestions. I am looking forward to getting started and shrinking that pesky adrenal gland tumor!

Eileen L

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AnnaBanana30's picture
Replies 10
Last reply 6/4/2015 - 1:57pm
Replies by: CWeclaw, Anonymous, AllyNTAus, AngelaM, teri0915, natasha, bdhf

Has anyone developed melanoma while pregnant or shortly after?

I just think it's intresting that two moles on my body changed while I was pregnant with my son and turns out they were both melanoma in situ. I just wonder if there's a link since your body chemistry changes so much while your pregnant.

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CherylL's picture
Replies 4
Last reply 5/10/2012 - 7:06pm
Replies by: Phil S, CherylL, susanr

Hey Friends---

Have been very derelict in visiting the board, but just wanted to jump and and share that my husband Scott, now freshly Stage IV, has just had bag #5 of high-dose IL-2 administered here at UVA under the amazing guidance of Dr. Grosh. 

While his side effects are palpable (intense flu-like malaise, violent rigors/shivers, blood pressure drops, bloating, etc.) at this point, the timings are predictable, and the incredible crew here (amazing nurses, think EVERY week should be Nurse Appreciation Week!) are making this as pleasant an experience as possible. :)

We are highly optimistic my man will be one of the "total, durable, life-long responders!" 

Along with my husband's unflagging sense of humor, we are finding a valuable supplement to the traditional medical intervention is the shared success stories of others.

If you are---or know of--- a long-term Stage IV survivor following IL-2 treatment, would you take a moment and share your good news so I can relay to my husband (and our now 10-year-old twins---they were 4 at Daddy's original diagnosis)?

We do know stats and don't for a single minute live our lives or predict our family's outcome based upon them, so if you don't mind, please keep things positive!  :)

Many thanks, and KEEP FIGHTING, Friends!
 

Cheryl
Wife of Melanoma Masher, Scott, now Stage IV, with small "incompetent" mets in lungs

*Diagnosed Stage IIa in October 2005 (WLE/SNB - no nodes), Stage IIIc in October 2009 (radical neck dissection, multiple affected nodes), January 2010, supraclavical recurrence and resection, still Stage IIIc. June 2010, targeted radiation. August 2010, Clinical trial at NCI/NIH under Steven Rosenberg. March 2012, surgical biopsy at NIH reveals long-observed and stable nodes in lungs "changing" and verified melanoma. Stage IV, and ready to pull out the big guns! 

 

 

 

 

 

 
 

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My husband went to the dermatologist yesterday, he had 3 more spots she sent to be checked out. Praying they all come back negative!

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MeNDave's picture
Replies 12
Last reply 6/26/2012 - 12:30am

Just wanted to post our good news, first time in four years of battling the beast.  Dave's recent decline took IPI off the table, as his LDH was over 8000 (yes, that's 8k, not 800).  The cancer was spreading quickly, and his onc told us that we may have to face the fact that we couldn't keep ahead of it.  The day before he was released from the hospital, Dave did one round of carbo/taxol.  After being bed ridden for 5 days, he did a complete turn around - even going back to work.  He went in for his bloodwork yesterday and his LDH has dropped to 2390 - still high, but much better.  The one met in his chest that could be felt has shrunk to half it's size.  His oncologist was thrilled with the results, and we were over the moon!  FINALLY.... something is working.  Plan now is to do one more round next week, then scan on June 1.  If all goes well, he will start IPI in June, as we know that this is only a "bridge" treatment.  His energy level has increased, and we are decreasing the methadone, steroids, and gabapatin.

I can't tell you how happy we are! 

All my best to all the mel warriors - don't ever, ever give up!

Maria

Don't ever, EVER, give up!

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

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Replies by: natasha

Vitamin D Levels May Be Vital For Patients Who Suffer From Some Forms Of Leukemia

Easy Health Options Staff | Nov 05, 2010 | Comments 173

There are more than 259,000 people living in the U.S. who have leukemia or are in remission, according to the Centers for Disease Control and Prevention. Now, researchers have discovered a link between chronic lymphocytic leukemia and vitamin D.

The most recent study adds to previous evidence that vitamin D deficiency is a risk factor for the progression of several cancers, including colorectal, melanoma, lung and breast cancer. Low levels of this vitamin may lead to poorer outcomes.

For the new research, scientists from the Mayo Clinic discovered that cancer also progressed much faster in chronic lymphocytic leukemia patients who had insufficient vitamin D levels. These individuals were nearly twice as likely to die compared to patients who had adequate amounts of the nutrient.

The investigators also found that when vitamin D levels were increased, it led patients to a longer survival time.

Lead researcher Tait Shanafelt said that "between one-fourth and one-half of patients seen in routine clinical practice have vitamin D levels below the optimal range." He added that that there may be up to 1 billion people worldwide who have insufficient amounts of vitamin D.

Individuals with leukemia increase their vitamin D levels by consuming more tuna, salmon, eggs or mushrooms.

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http://www.easyhealthoptions.com/cancer-concerns/800221213/

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The best way to increase your vitamin D-3 is to spend 15 minutes a day in the sun between 10am and 2pm.

Everyone reading this posting should get their vitamin D-3 levels checked.

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

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Richard_K's picture
Replies 6
Last reply 5/10/2012 - 1:44pm

Got results from Monday's scans.  Everything is stable with no change in what is probably dead or scar tissue.  Another set of scans in six weeks.

Dick

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LindyVA's picture
Replies 1
Last reply 5/10/2012 - 3:19pm
Replies by: Gene_S

My husband had four infusions of 5mg of Yervoy Dec 2011 and Jan 2012. His scans in March showed tumors in brain, lungs, pancreas were either gone or inactive. His also has had gamma knife twice in past 8 months which may have contributed to shrinking of bain nets. His doctor was very excited and said he believed my husband was a very positive responder.

He has developed a large tumor on one lower leg in an area where he had wounds in the past. His onc.  is concidering re-introduction. My husband  is the only patient on yervoy and has relied on me to keep him updated him and current on yervoy from my research. When I asked why not maintenance rather than a full introduction which might be less destructive on a 72 year old man which heart problems, the doctor stated he was not familiar with maintenance. I have seen several posts about this and wondered how others have done on maintenance vs a complete re-introduction.

It is less than six months from starting the yervoy and considering the onc said he was a good responder I wonder if the yervoy may still be working and maintenance would be less aggressive.

Any thoughts......

Thanking you in advance for your input....

 

Linda

 

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Just a quick note to let everyone know that we now have a small Caregiver Support Guide available online and also as a hard copy.  I would like to take this time to thank all of the MPIP community members who volunteered their thoughts and feelings as we wrote this piece.  Your thoughts and feedback were extremely helpful!

Shelby - MRF

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natasha's picture
Replies 1
Last reply 5/9/2012 - 8:33am
Replies by: lhaley

Did someone have the same?

I had my WLE more about 2 monhts ago and everything healed escellent!!

For last week I had light pain  in the scar area.Probably it can be down to my period?

really don't know and afraid of reccuriance :(

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Lauri England's picture
Replies 5
Last reply 5/10/2012 - 2:38am
Replies by: deardad, aldakota22, natasha

I was scheduled for scans last Friday, but I ended up having it done on Thursday at the ER.  I had a headache that started the Sunday before and had it all week.  Not a normal headache, but like a migrain.  I went to my family DR Wednedsay and she put me on Predisone and said it should help within 24 hours and if not go to the ER.  Well it didn't help so Thursday I went in.  They did an emergency CT scan of my brain and then the rest of my body.   They told me there was nothing that showed up on the scan at all anywhere.  What a relief.  Still not sure why the headachs.  They gave me vicodin for the pain and motrin.  These have been helping of course.  I have not had a headache since last Saturday.  I have an appt with Onc this Friday.  Even though I got the results of the CT already I still wanted to keep the appointment because this is the doctor that will be scheduling my furture scans.  If all stays good I want to go back to work in the next couple months and maybe try to live a normal life once again if possible. 

Don't sweat the small stuff. There are bigger fish to fry!

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Hope Returning's picture
Replies 1
Last reply 5/9/2012 - 9:35am
Replies by: palmspringswalt

Does anyone know how Dr. O'Day is doing? Why he disappeared and is he now back to himself or different? He was an asset to the life of many  melanoma patients

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