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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carol b's picture
Replies 11
Last reply 5/28/2011 - 7:29pm

First of all I want to thank everyone for all of your prayers. You all walked beside me while i was taking my treatments. My goal was to get 10 bags and 10 bags i got. i should have skipped the last one but as my family says i am stubborn.  The side effects this time are minimal. Little itching and alot of confusion.My mental capabilities are only back to about half. I pray that isn't permanent. I go back on June 1 to see how many bags of the IL2 i can get. My goal is 5 because i don't want to over do it and not just be physically damaged but mentally as well. That scares me more than melanoma. After my 5th bag i didn't know who my husband was. The most wonderful man  in the whole world and i forgot him. Thats terrifying to me. I rather be dead than to no longer know him. So thats why im stopping at 5 bags. I have to do at least 15 bags  to stay on IL2 and so thats why im choosing 5 bags for my goal. I understand its only been 4 days since ive been home but my motor skills and my thinking are not what they should be, in my opinion. I have only 5 days left before i do it again. And im gonna need all the prayers i can muster to get thru this one. Thank you for walking this walk with me and even though you were not there thank you for holding my hand and praying with me. i know i got TONS of prayers this time because the walk was so much easier and peaceful. I just wanted to give you all an update and to thank you for praying for a stranger. May God be with you all as we walk thru this valley of death, , fearing no evil,, because we all know who is in control. But friends like you get me thru my day and for that i will say thank you again. May god bless you all and my prayers will not stop, i will continue to pray for you, The warriors and the caregivers.

carolb

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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arnie and sherry's picture
Replies 4
Last reply 5/28/2011 - 6:05pm

My husband arnie, was diagnosed in2008 it started with a mole on his back, 9 months latter it moved to his neck 21 lymph nodes removed started intrerferon for1 year very hard on him .13months later it spread to his chest  he had surgery to remove it . it has been about 11 months and he has been doing fine he just had a cat scan of chest abdoium pelvic and neck . does anyone know what we should try next.

keep on trucking

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dian in spokane's picture
Replies 10
Last reply 5/28/2011 - 5:43pm

I saw my oncologist yesterday and had pretty positive results for the scans I had on Monday. I am now over two years in remission, but for over a year of that there's been some medium SUV readings in my neck/throat area. The first time coincided with a bad lung scan, and all of it seemed related to a horrible bout of some flulike thing I had for weeks and weeks. That was sometime in January of 2010. Things have been better on all my scans since then, but there's always a little something lighting up in that area.

This scan, the SUV is actually lower, at 5.4  than the last scan (in Jan it was 6.1) but it has grown from 14 mm to 2 cm. They don't call this a mass or tumor, but refer to it as 'a fullness in the left tonsillar region which may be malignant'

So I'm going to see an ENT, maybe have a biopsy, maybe have a tonsillectomy, maybe neither..who knows. With my history I can't ignore the recommendation but neither my oncologist nor I really believe this to be melanoma. And no other signs of subQs or organ involvement, chest, pelvis, abdomen and extremeties all clear. 

Oh! and I convinced him that we can go out to 6 month scans! it will be nice not having to do all of that again for another 6 months. Now I just want them to deal with the throat thing in a timely manner so that I can be singing in time for festival season.

dian in spokane 

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killmel's picture
Replies 6
Last reply 5/28/2011 - 2:25pm

Just wondering how you are doing??? My prayers are with you both.

Doug

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jene8511's picture
Replies 16
Last reply 5/28/2011 - 11:27am

Hi Everyone..I will try to keep this as short and sweet and understandable as I can..

I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma. 

I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued. http://www.gmmm.com.ve/lectura/00000658-200906000-00021.pdf

It brings me to ask...do I really need to have this done? I feel as though they want to use me as a lab rat....take my nodes, see if anything is there..and then the course of treatment will be the same...( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me. 

I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is...if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway. 

Has anyone elected NOT to do this surgery??

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mimi0201's picture
Replies 2
Last reply 5/28/2011 - 9:21am
Replies by: Cate, Carol Taylor

     My husband has been deemed too weak for Yervoy and is now at home with Hospice care.  This has been a long journey with more to come. 

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debandmike's picture
Replies 15
Last reply 5/28/2011 - 6:34am

I am the primary caregiver for my husband who has been dianosed with Stage 4 Melanoma Cancer with tumors in his lung and liver. That was Valentine's Day 2011 and he has completed his first series of IL-2. It actually went better than expected buy we have to now wait for results until June 21st. Since cancer has become part of our lives it has been so different and scarey. Looking for someone to relate to with this experience so that I can atleast survive whatever lies ahead.

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Nicky's picture
Replies 2
Last reply 5/28/2011 - 5:59am
Replies by: Nicky, Carol Taylor

I'm 45 years old. and I feel as if I''ve been on this cancer journey for so long ( x2 melanoma (1 node) 11 years NED, radiation therapy), other skin cancers (squamous/basal (28 years) and on a check up today, another suspicious mole that the hospital want biopsied.  I try to be upbeat but it just gives you a wakeup call to always be vigilent with this disease and to regularly get skin checkups even when you are this long NED. I love life and again whatever happens, I'm prepared for battle.  I believe in being positive and after losing  many loved friends on this board, I have to keep fighting for their sake and for me and my family.

I still believe that if you can get this disease early enough you have a good chance of survival, be vigilent. 

Thank you for being there all this time and for being the greatest support to me over all these years MPIP.

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Rendergirl's picture
Replies 5
Last reply 5/28/2011 - 1:23am

When I did my PET/CT scan a few weeks ago before my lymph node surgery, they said there was a spot on my knee. At the time we were busy with other things and said we'd check on it later. Yesterday I had an MRI of said knee and my onc called today with the results. I have a "perforated synovium" which is a perforation of the lining around my knee. Apparently people who play sports tend to get this injury, and I'm SO not a sports person. I have no clue how my knee got like this, it doesn't even hurt. I haven't had any injury to it that I can remember. The onc said he was referring me to an ortho doc, who would probably want to do some kind of surgical procedure to make sure it's not Melanoma related. Sounds like a biopsy to me. Anyone ever heard of this??

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I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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nickmac56's picture
Replies 2
Last reply 5/27/2011 - 3:03pm
Replies by: TracyLee, Vermont_Donna

 

Yesterday was my wife's first brain radiation treatment using the Cyberknife method. It went smooth as silk. The place (Swedish Radiology in Seattle) is quite impressive - high tech meets spa. The actual treatment itself is about 40 minutes. But there is a bunch of time for set up, radiologist and physicist sign-off of the plan and patient visual identification. She will have five treatments total. They have the room set up with flowers, nice furniture, music of your choice, and warm blankets to cover you up. But she is alone in the room when it all happens; the techs are in a control room just outside, and the door that gets closed is like a bank vault door - the walls in the room are two feet thick. From the control room they have three cameras and audio communication so they can track what is going on.

"Lenore" is the robotic delivery arm of the radiation. She has six axles and can essentially contort into any position around the head to deliver the beams. Meagan lay on a moveable bed. She is strapped down and wearing a mask (formed previously of a mesh polymer) to keep her head still. It's all computer driven based on the radiation plan. If she shifts even slightly or through her breathing her head moves, the bed and Lenore adjust. 

I reviewed the plan with the radiologist and he showed me the concentric rings of intensity they were using around the targeted area (the boundary of where her two tumors were removed during her craniotomy). They go after a bit of margin.
So far no ill effects. She is on steroids twice a day to control brain swelling throughout treatment and then will taper off them at conclusion of the treatment. No indication on the MRIs from last week of any cancer activity outside the known area.

She's home and feels fine, except she said she felt a bit fuzzy as the evening progressed (treatment ended at 5:00pm). The only expected other side effects are fatigue and headaches.

She has another treatment today, then three next week starting Tuesday. Even Lenore gets the Memorial Day weekend off.

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

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lovingwifedeb's picture
Replies 5
Last reply 5/27/2011 - 12:05pm

Please light a candle for Bob, loving husband and my best friend, The Gambler. He is currently losing his battle with this disease as his brain is swelling and hemorrhaging at a rate too quick to repair the damage done. We are in the process of assessing his situation and bringing Hospice into our home to help us get through this next phase.

I have kept a journal on our family blog and will try to update soon:

redesign08.blogspot.com

Deb
lovingwife, to Bob stage 4 melanoma

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jimjoeb's picture
Replies 2
Last reply 5/27/2011 - 9:26am
Replies by: jimjoeb, Carmon in NM

I have decided to consult with a naturopath to see if there is anything that I am comfortable with to complement the treatments that I have and will be receiving from the traditional medical system. Has anyone else done this?

Be Not Afraid-God is with you always Stage IIIa

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Nicky's picture
Replies 3
Last reply 5/27/2011 - 9:13am

I'm 45 years old. and I feel as if I''ve been on this cancer journey for so long ( x2 melanoma (1 node) 11 years NED, radiation therapy), other skin cancers (squamous/basal (28 years) and on a check up today, another suspicious mole that the hospital want biopsied.  I try to be upbeat but it just gives you a wakeup call to always be vigilent with this disease and to regularly get skin checkups even when you are this long NED. I love life and again whatever happens, I'm prepared for battle.  I believe in being positive and after losing  many loved friends on this board, I have to keep fighting for their sake and for me and my family.

I still believe that if you can get this disease early enough you have a good chance of survival, be vigilent. 

Thank you for being there all this time and for being the greatest support to me over all these years MPIP.

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Replies by: dawn dion
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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