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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nickmac56's picture
Replies 9
Last reply 2/11/2011 - 10:43pm

My wife's 12 week PET/CT scan was not good news.  Her original lung tumor has grown, plus multiple mets in both lungs, lymph nodes and kidneys, plus skin tumors.  Maybe there will be some lag effect, but given disease progression it does not seem consistent with what other late responders on Ipi have experienced even by week 16.  We are going to try 4 weeks of Tamoxifin to see if hormones have anything to do with it (weak link and a long shot but women have more melanoma than men and my wife is convinced tumor ignition times to her cycle), do the 4 week follow-up Ipi scan, and then go the Interleukin-2 route (a two week hospital stint).  Also going to see Dr. Cassian Yee at Cancer care Alliance (U of W professor) about his clinical trial (taking your own T-cells, creating hordes of them, bathing them in anti-cancer stuff and re-infusing).  Our oncologist does know him, and is pretty skeptical of it as they've only had one long term durable remission, but will support us.  Timing is fine as it takes couple months to harvest enough T-cells - they will use previous tumor already excised - so we can do the IL-2 route and still do the UW trial.  After that, maybe the NIH trial.  But we are clearly in a race against a disease progressing faster than the meds are working . We are also looking into all the naturopathic stuff, even though we are already on the anti-cancer diet.  

Questions:  anyone on a non-randomized NIH trial?   A friend has also told me about some clinic in Tijuana with some success with melanoma patients (yea, I know...)  - anyone have any experience with it?

thanks, Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Hi gang. I've been on Social Security Disability for about 5 years due to melanoma. A stage III diagnosis is an automatic yes, and I was Stage IV when I applied. Anyway... I have THANKFULLY been NED for 4 and a half years, and have simply been living my life without the stress of having to hold down a job. Hubby makes a good income, and my disability helps us pay the bills.

Well, SS sent me a re-evaluation form to decide if I still need to be on disability. So I'm a bit afraid that they will determine that I'm no longer disabled, even though I'm still considered a stage-IV patient. (I also have lymphedema, which lately has been more of a hindrance than the melanoma has).

If you or someone you know was on SSD for melanoma, and lost it... would you let me know? OR if you've been re-evaluated, and they let you stay on it... please also respond. It would help with my nail-biting!

Love to you all!

Jackie Doss, Stage IV NED... Dallas, TX

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Angela C's picture
Replies 4
Last reply 2/11/2011 - 7:16pm

Hey everyone.

I just had my first cycle of IL2 in January. My second week in the hospital was the week of the 24th. After each round, I have been experiencing a strange sensation in my head. I would describe it as a medicine head feeling. I just feel kind if out if it. I am kind of light headed and dizzy. It us a hard sensation to describe.

I had this after the first week and the doctors seemed surprised by it and not sure what to make of it. I was originally attributing it to the anti anxiety meds I had taken, but those have been out of my system for a week and a half now and this feeling is still here.

I gave a check up with the doctor on Turs and we'll definitely be talking about it. I just wondered if anyone else had experienced something similar.

I can't help but have the thought cross my mind that I could have a brain metastasis causing these symptoms. But, I'm trying not to freak out.

Anybody have a similar experience??

Be kind, for everyone is fighting a great battle. -Plato

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MACK under the knife's picture
Replies 5
Last reply 2/11/2011 - 6:24pm

So after a right side full neck and face  surgery, They removed a tumor the size of a small lemon. They performed several weeks of radiation and here we go again. Looks like they didn't get it all as I have another lump growing in the same area as before. Looks like I am headed in for another slice and dice with radiation and this time I think I will have no choice but to have chemo. Alittle nervous with the chemo as I have seen the effects. How do you make a kid believe your gonna be fine when that stuff brings you so close to death. My wife and I have talked about when we'll tell her if chemo is necessary but man this is rough on her she doesn't need this. I can deal with all this but I feel bad when she starts asking me if I will be here  to walk her down the asile. She is 13 how do you answer. I put on the tough guy and say I will be here as long as I can and I'm not ready to leave. She doesn't buy it. It also hurts that we have no money for the things she has been use to doing. Paying for the meds and the hotels and hospitals has made it hard. Keeping the mortagage and utilities paid but not knowing what happens if the lay me off . Hoping for the best prepping for the worst.

 

Thanks for listening

 

Mac under The Knife

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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KellieSue's picture
Replies 16
Last reply 2/11/2011 - 1:45pm

My friend Jacque passed away peacefully last night at home. She was able to come home from the hospital yesterday and be with her family.

I know that she is without pain now and peaceful but I'm so angry and sad for her family now. She left behind a wonderful husband and 3 young girls.

www.caringbridge.org/visit/jacquelinekaalbergmoore

 

Kellie(from Iowa) Stage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Rick W's picture
Replies 1
Last reply 2/11/2011 - 10:13am
Replies by: y'all Come In

FYI:

Protein involved in early steps of melanoma development revealed

 

Biomarker test shows promise for melanoma diagnosis

 

Novel immune system-based gene therapy induces strong responses in metastatic melanoma, ...

 

Mount Sinai researchers make major breakthrough in melanoma research

 

SkinzWraps Secures Exclusive Distribution Agreement for Nanotech UV Protection Spray

 

Clinicians cite time, patient embarrassment as barriers to performing skin cancer exams

 

Ultraviolet light helps skin cancer cells thrive, researchers report

 

Childhood cancer research in danger

 

Researchers predict nearly 1.3 million cancer deaths in Europe in 2011

 

Conceptualizing cancer cells as ancient 'toolkit'

 

Generic drug may improve the effectiveness of cancer nanotherapies

 

Discovery of a biochemical basis for broccoli's cancer-fighting ability

 

Infiltrating cancer's recruitment center

 

Unrealistic optimism appears common in early cancer trials

 

Researchers use cell 'profiling' to detect abnormalities -- including cancer

 

Cancer Research Institute invests $450k in Oncovir to manufacture powerful immune stimulant

 

Contagious cancer thrives in dogs by adopting host's genes

 

New European collaboration on cancer research

 

MIT scientists discover cancer-fighting role for cells

 

Molecular battle in cancer cells offers clues for treatment

 

Depression in cancer patients might be less common than previously thought

 

Funding to improve cancer survival rates

 

Projections of cancer care costs in the US: 2010-2020

 

Cancer costs projected to reach at least $158 billion in 2020

 

Cancer cell survival is not 'miR-ly' dependent on p53

 

VIB-K.U. Leuven scientists clear the way to alternative anti-angiogenic cancer therapy

 

Cancer in a single catastrophe

 

Steering cancer inflammation to inhibit tumor growth and spread

 

Punctuated evolution in cancer genomes

 

Protein wields phosphate group to inhibit cancer metastasis

 

Advancements in fertility preservation provide oncology patients new options

 

National Cancer Institute renews Cancer Center designation for Huntsman Cancer Institute

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Melanoma Mom's picture
Replies 9
Last reply 2/11/2011 - 10:00am

Our 14 year old son turned 15 yesterday! He makes us more proud by the day. He completed high-dose Interferon with flying colors and is now completing week 5 of low-dose. He administers his own shots with no trouble. He returned to basketball a few weeks ago and last night he scored 5 points! A very special birthday, as he hadn't yet scored in a game this season so that felt really good to him. He is currently getting all A's at a tough prep school. He is so strong, positive and amazing. My son is my hero!

PET/CT/brain MRI booked for mid-March here in Maine and then another trip to Dana-Farber in April. We have started a Relay for Life team and our team name is NED. :) We are meeting with our Make A Wish reps today for the first time. Our son is thinking he would like to go to Alaska.

Stay strong, everyone! Every day gets us closer to a cure. 

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glewis923's picture
Replies 3
Last reply 2/10/2011 - 8:35pm
Replies by: glewis923, Linda J, NicOz

Dear All:   Completed my 2 SRS (NovalisTS) sessions where hopefully 5 brain tumors are now simply compost.  Next Mon. I start a 2 week WBRad. as i have at least 7 more "meaurable" 3mm + tumors and God knows how many microscopic c-cells.   SO.....I have no choice but to WBR.

 

Despite a lot of "scare stories", I ain't really skeered a lik, BUT,  I would like any advice on those of you who may be already an official ranking member of the exclusive WBR Club.  Like:  What should I eat,  what to realistically expect, and anything that may be from your 1st hand experience.   I'm pretty tough, triple chemo didn't hardly phase me.  The I-feron was a little rough (Mostly mental i think- it will cure smoking, eating, and anything you may enjoy!), but i perservered.  If i loose a few more brain cells, I'll just hav't to resign from Mensa !   ha...ho...weep.

Thanks for any advice!   Love All,  Grady & Family.

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janiam's picture
Replies 4
Last reply 2/10/2011 - 7:56pm
Replies by: Jerry from Cape Cod, Amy Busby, Anonymous

We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV that have been treated with medications in the past two years.

The purpose of our study is to understand the full impact of malignant Melanoma on patients and their families, including the physical, emotional and social aspects. The results will assist in developing new treatments in the future.

Interviews are by telephone and web, approximately one hour and may be scheduled between 2/17 and 2/23.

Participants receive $200  and it can be donated if so wished.

Please respond with interest or questions to contacts below.

 

Kind Regards,

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710

jmallery@comcast.net

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jtheisen29's picture
Replies 4
Last reply 2/9/2011 - 5:02pm

Today I am happy to announce that my twin sister who was diagnosed while 5months pregnant with stage 3b on Sept 09 is injecting herself for the last time with interferon. She completed the 1 month of high dose and went on to the 12 month maintance. What a year!!!! Rollercoaster ride would be an understatement! We just had to learn to hold on for the ride!

Although throughout her treatment she was able to maintain a somewhat normal life, she dosen't remember a lot from the early months of having her new born baby. So my prayer for her is that now that she is done that she will be able to thrive and live life to the fullest mentally, physically, spiritually and that the memories she is able to make with her now 1 year old and 7 year old will be the best ever!

So I say GOOD BYE cancer!! Can't say our family will miss you at all. Little did you know that you would bring our family together, make us stronger, you taught  us how to laugh, taught us how to cry and most of all you taught us how to love!!! So cancer even though we hope that you are gone forever, the lesson will remain in our hearts. 

If you could please keep her in your thoughts and prayers her exit scans are Friday... We remain cautiously optimistic about the future and we pray for many more years of being N.E.D!! indecision

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Hello, Ive been visiting this site for almost a decade since I was diagnosed in 2001. I never fail to be amazed by the level of support you provide for each other.I am stage IIIb and have now been NED for seven years. I consider myself to be very lucky indeed and in some ways the last ten years have been the best of my life. I took early retirement when I was diagnosed, I have a wonderful wife, five great kids and six grandchildren (born since my diagnosis). However I am always aware that the cloud of melanoma does not go away and that many people have not been as lucky as I have been up to now.I am taking part in a charity walk to raise money for The Royal Marsden Hospital, where I have recieved outstanding care. If anyone would like to help please go to http://www.justgiving.com/mike-snelle Thankyou!

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adgesoph's picture
Replies 4
Last reply 2/8/2011 - 7:20pm

My dad has stage 1V melanoma (braf positive), just finished up 2 rounds of Interleukin-2 and it didn't work (no real surprise there) so now his doctor is looking into either ipi or PLX4032.  Which one is best?  Pros and Cons?  What would you do if you were in his shoes?   I want to help my dad anyway I can and need to know the ins and outs of all this stuff so we can make the best choice.  Please help!  Thank you!

 

Adrienne

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Terra's picture
Replies 6
Last reply 2/8/2011 - 10:55am

Hi, we have an appointment this week with our oncologist and would like to dicsuss systemic treatments. 

 

My husband is BRAF negative so I am assuming that ipi is the only one - does anyone know of the others?

He had a lung nodule removed in June '10 and a lung node removed in January '11 -we will be having scans soon but I really want to be ready to discuss all and any options with her (most recent scans before surgery showed no other cancer although we have been watching some suspicious spots they have not changed and we don't what they are).

 

Thank so much in advance

Terra

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Jan in OC's picture
Replies 2
Last reply 2/8/2011 - 2:51am

After wearing am "immobilizer" on his arm all weekend, my husband got a bad rash and blisters wherever the sling rubbed.  Don't know if this is an IPI reaction (had first infusion on 1/28) or pain meds or just plain sensitive skin?  Is rash and blistering normal for IPI?  what can he take to help?   The OTC benadryl doesn't seem to be working.  

We saw the orthopedic doc this morning and they put a larger (better) brace on his arm.  The doc wants to wait for 3 weeks until the swelling goes down to decide on surgery due to risk of infection, lymphadema, etc.  In the meantime, he thought there was no reason to delay the MRI and brain radiation, if he can lay still for it.  I have not heard from the RadOnc today, have a call into them.  

One day at a time.....

Jan

laughter is the best medicine

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Anonymous's picture
Anonymous
Replies 0

Thought I would share some information with all of you that might be helpful.  Emory Winship Cancer institute is providing free information to patients and their caregivers on Feb 26th.  To learn more, click on: https://winshipcancer.emory.edu/events/WinshipContentPage.aspx?nd=821&ei...

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