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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awg's picture
Replies 5
Last reply 5/29/2012 - 2:10pm

I am glad to report that I am scheduled to complete my last sub-q interferon injection around July 18th. Overall I tolerated the treatment well and had only minor symptoms assoicated with interferon over the last year.

I was able to work full-time during the treatment.

My last PETCT was in December 2011 and it was all clear. I am schedule to have additional PETCT in September 2012.

I am thankful for this form and the depth of information and encouragement that is available here.

 

Regards,

 

Allen

Stage III

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/29/2012 - 12:00pm
Replies by: utee72, Anonymous, Janner

I know this probably sounds like a crazy question.  But, it seems like our immune systems and melanoma development are very linked.  So that someone immuno-compromised in some way would be at greater risk of developing mel.  Does that mean even when we have a cold or the flu or maybe even something worse?  I'm even afraid to get hernia surgery because I wonder if I'll be at all immuno compromised afterwards.  I also worry about getting it done because I wonder were I to get another primary mel, and needed  aSLNB in groin area, would this surgery mess up the drainage pattern, etc..? 

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Rea's picture
Replies 16
Last reply 5/28/2012 - 11:03pm

I haven't posted in a while, but wanted to thank everyone that has responded to my posts over the years and for the support I received here.

This was the first websie and bulletin board I found when researching melanoma for my husband almost 10 years ago.  It has been very helpful to me.

He lost his battle on Saturday, 5/19 after a courageous journey.  He was a true fighter and never gave up hope.  I know he's in a better place now -- free of pain of this terrible disease.

I pray for all of you battling the disease.  Stay strong!

God Bless

Rea Hix

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bruski1959's picture
Replies 6
Last reply 5/28/2012 - 11:00pm

Jackie took her 4th Yervoy treatment April 26th, and now after her 1 year battle with the beast, she is now home from a 10 day hospital stay, Jackie's organs are failing. We started Jackie on home hospice care yesterday. That is what Jackie wanted. All her underlying conditions have contributed to her multi-system organ failure. We took a shot to fight the beast. We have been shooting to get to our 20th wedding anniversary on June 12th. Praying for God's will in Jackie's life.

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Gene_S's picture
Replies 1
Last reply 5/28/2012 - 10:18pm
Replies by: kristine
 
However there is no mention of ippi in this article?
 
Best wishes,
Gene

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

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deardad's picture
Replies 8
Last reply 5/28/2012 - 10:04pm

Hi I think Im starting to sound like a broken record, but I just want to hear how everyone's going on Zelboraf? I know Dick is a special long responder but are there any others out there? If you are on this drug what are you're plans when it stops working?

Thanks 

Nahmi

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benp's picture
Replies 14
Last reply 5/28/2012 - 1:22pm

Hi, 

I've been on GSK's BRAF inhibitor since July 2011. After experiencing severe abdominal cramps several weeks ago, a CT showed a small bowel intussusception, which is (in adults) usually caused by a tumor. 

Long story short, I underwent surgery to examine the cause, and a small bowel met measuring 3cm was removed. Bowel surgery is surpsingly much more "uncomfortable than a cranitotomy!

My brain MRI also showed likely progression in 1 met, so it was suggested that I receive tratment with Gamma Knife on all my brain lesions. I completed this today. Not a very pleasurable experience, though very good to have done. 

Currently I'm staying on the drug, awaiting for a vacancy (!) in another trial. Sometimes it seems strange that we're now experiencing an explosion in therapies for melanoma, though it's still very hard to find a place in a good trial.

Thanks for reading, 

Ben.

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yoopergirl's picture
Replies 7
Last reply 5/28/2012 - 12:00pm

I am due to see my oncoligist on June 4th after my cat scan to see if I am having a response to the Yervoy or not, then will discuss treatment. I went the other day to have my hair done and eye brows and my beautician said some of the hair on my brows are white, I said are you sure they are not grey and she said they are white!! I can't see that since I wear glasses and the brows are kinda hidden, I thought I saw on this board that it would be a good sign  that  the ipi was working although my tumors are still big so I guess I won't really know until we discuss my scan. Has anyone had this happen to them? Thanks.

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/28/2012 - 10:26am
Replies by: becky15, natasha, Anonymous, Janner

 

I am from the UK and have recently been diagnosed with an SSM stage 1a on my leg, Breslow depth 0.72mm, no ulceration, no mitosis, no regression.

I am very confused about my pathology report which states an "invasive radial growth phase" for the growth phase but also Clarks 4.  This seems contradictory to me and my consultant has not been much help in clarifying this, saying that it must have a vertical growth element.  Further down on my report it says, against where the mitotic rate and tumour infiltrating lymphocyte figures are shown, "(VGP only) - N/A" and then goes on to note in brackets "0 per mm squared" for mitotic rate and "non-brisk" for TIL.

Can anyone clarify this apparent contradiction?

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Snickers60's picture
Replies 14
Last reply 5/28/2012 - 10:05am

Anyone have this ?   It's nowhere else on Wayne's body, but his face looks like he BURNED IT.    He started taking ZEL on Monday night.  Poor thing was convinced he had read to take 2 pills in the morning, 2  at night......that is not what the script says.    It is 4 in the AM and 4 in the  PM, so he started that on Wednesday night, when he realized his mistake.   The rash began almost immediately. Has gotten worse.   HE HAD NO SYMPTOMS ON 2 - 2 X D !  

Can anyone give me input on this ?    Is there a ZEL Number to call 24/7  until he can get back to them at MDA !

Also, where do you all find SUNSCREEN clothes ?    Good choices and good prices ?

WORRIED........

Thanks so much,
Nancy caretaker of beloved patient and WARRIOR WAYNE  :-)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Hi All,

I'm on what I think is a fairly heavy CT scan rate of every 60 days, and have noticed that over time the CT scans are causing a "hangover" effect almost akin to when I was on Interferon.

Drinking the barium is no problem, the injection of contrast causes the normal heat flush and odd taste/smell. Then as the day progresses I feel worse and worse despite drinking 56+ ounces of water during the afternoon.

Anyone else out there have the same experience?

Carpi Diem

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jmmm's picture
Replies 18
Last reply 5/27/2012 - 10:31pm

My husband will be starting Zelboraf in the next week or so.  What "real" side effects can he expect--I know we have the information the dr. read us from the website (my hubby is the 1st patient his doctor has on zelboraf).  We just want to know what other patients are experiences and any suggestions on things that can help him feel better on the medicine.  Thanks for any help!

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Erinmay22's picture
Replies 9
Last reply 5/26/2012 - 9:39pm

So I just had my latest scans.  I've been lucky to be clear since I had nodules show up in my lungs Jan 2011.  This time the scan shows a small section in my small intestine that states there is significant thickening of the wall?  I also have several lymph nodes around that area that are swollen.  

I must have some sort of small GI bleed since my hemoglobin was down to 5.6 on Tuesday when I went in for my appointment.  Got hospitalized to get 3 units of blood and responded very well to it.  

Sounds like the plan right now is to go ahead and start me on Zelboraf.  We already know I'm braf+ from my lung biopsy in March 2011.  There was talk of surgery but they don't now if they would get all the lymph nodes.  So the plan is to start with treatment.

Guess I'm wondering what thoughts/suggestions people have on melanoma in the intestine.  I've been told that it's a common place?  Wondering if there is a possiblity it could be something other than melanoma?  I know the only way to know is a biopsy.  Surgeon is saying that the only way to biopsy is to cut open and then might as well just take the section out...  I have lots of questions for my next appointment.  

Thanks everyone!

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Sherron's picture
Replies 3
Last reply 5/25/2012 - 8:11pm
Replies by: WendyPam

Has anyone heard how his surgery went this morning? 

Take Care,

Sherron,wife to Jim FOREVER

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deardad's picture
Replies 4
Last reply 5/25/2012 - 7:44pm
Replies by: deardad, Woodlands, Phil S, benp

So Dad had his first round of WBR today.....seemed fairly straight forward but now 4hrs later he is extremely tired and asleep in bed. He said he had slight blurred vision and a headache?

I know these are all possible symptoms, but so soon?

WBR warriors please come forward with some experiences.

Thanks in advance 

Nahmi from Melbourne

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