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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Springbok's picture
Replies 15
Last reply 1/2/2011 - 9:55pm

I have been coming down from a month long high after the results of my SNB were NED. I had lost 10lbs just from the stress of waiting for results. The pathologist didn't seem to be in any hurry. And I was also not very hopeful. The primary tumour was ugly - Breslow 2.6mm, Clarke's level iv, ulcerated with Mitosis of 6/mm2.

Now in the cold light of dawn, I am thinking things over and would ask for some advice. Firstly, I read that the SNB is only 90 to95% accurate. What about the missing 10%?  Did they get the wrong node? Should one do the SNB again? Or does the cancer spread directly into the blood, and if so , can blood tests detect it?

The cancer surgeon sent me away, and told me to come back in 6 months for a check-up. Seems pretty casual to me, considering the speed with which this disease works. Also,  here in Calgary, with a public health system, they will not authorize any scanning unless there is good cause, and apparently there is not at the moment.

My buddies are urging me to go down to one of the good cancer hospitals in the US. But what more can they do for me?  All this would be on my own nickle, and I understand that PET scanning is very expensive. Still, if it furthers the cause, I will byte the bullet and pay for it.

Any suggestions on the next step?

Springbok

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Joan's picture
Replies 9
Last reply 1/6/2011 - 5:19am
Replies by: Joan, dian in spokane, Vermont_Donna, Anonymous, lhaley

Hello,

I am newly diagnosed and 6 days ago, I underwent WLE and SLNB at both armpits. 5 nodes were taken for one side and that side i am experiencing burningin the arm pit and spreading down the inner arm towards the elbow. I have no sign of redness, swelling, fever, just this burning sensation. Has anyone else ever experienced this? Thank you

I will not stress over the things I cannot change

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Vermont_Donna's picture
Replies 2
Last reply 12/26/2010 - 8:10pm
Replies by: Vermont_Donna, lhaley

hi,

Have had an achy section in my thigh, near where a melanoma was surgically removed for a couple of weeks...thought it might be a pulled muscle. It just feels weird there. I did bring up with my oncologist Wednesday that I was having some new sub-q's, but didnt specifically show him that spot of my thigh which feels weird. Now I just had a bone scan right before the Ipi started and I just had round two, so the bone scan was in November. It was clear, no sign of bone mets. They couldnt develop ths fast so that I had symptoms could they?? Just need some reassurance if there is any to be given!!

Thanks,

Vermont_Donna

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BarbieGirl's picture
Replies 3
Last reply 12/26/2010 - 7:36am
Replies by: Sharyn, King, molly

To the many I"ve met in person from the MPIP or just here online, and to those I've yet to meet (either in person or online), I wish you the merriest Christmas of all!!

On this, Jesus' birthday, I pray for a cure to this stinking beast we call melanoma!

I pray for comfort and peace to those who are fighting the war, those who are NED, and those who have lost a dear loved one. 

I hope all you guys and gals were good this year---don't want Santa bringing you coal or switches! =)

*hugz* and love from my heart and home to yours,

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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I am happy to report that I just got home (in time for Christmas) following my reconstructive procedure on my heel after my Wide Local Excision of my melanoma. After my skin graft surgery, I spent 1 week in the hospital and 2 weeks in a rehab facility while being restricted to keeping my foot elevated at all times. Unfortunately, I am still in a wheelchair, but have recently begun physical therapy to get back on my feet again. 

At this special time, I would like to share a song of hope for all who are fighting melanoma this Christmas.

In the song "I heard the bells on Christmas Day"...the song begins with the author (Henry Wadsworth Longfellow) hearing beautiful church bells ringing on Christmas day. To me this represents the happiness, health, and peace of mind that existed prior to diagnosis.  

The author then reflects the despair that he is feeling...right at the height of the Civil War, after having recently lost his wife and just receiving news that one of his sons was injured in battle. "In despair I bowed my head...there is no peace on Earth I said...for hate is strong and mocks the song...of Peace on Earth, Goodwill to men." To me this represents the crushing feeling upon diagnosis that all hope may be lost...in facing one's own mortality (or that of a loved one).

The song then turns incredibly positive with the next line..."Then pealed the bells more loud and deep. God is not dead nor doth he sleep. The wrong shall fail, the right prevail with Peace on Earth Goodwill to men." In an instant...what seemed so hopeless...suddenly takes on a new and heightened optimism. The bells are then heard "more loud and deep" thus signifying that "God is not dead nor doth he sleep." This newfound optimism signifies that all is NOT lost. The next line suggests that this malady can and will be overcome..."The wrong shall fail, the right prevail with Peace on Earth Goodwill to men"... Thus leaving in it's wake a whole person...happy and healthy once again.

If you are in the midst of this fight (for yourself or a loved one), please seek out and listen to this song this Christmas. Note how a feeling of crushing despair can turn around in an instant to the feeling of incredible optimism and hope.

A particularly nice rendition can be found on YouTube by searching for (I heard the bells Mormon choir). It is impossible not to be uplifted when those bells start ringing "more loud and deep."

May this help to bring you hope, peace, and joy this Christmas.

Mark (Stage 2A) from California

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EricNJill's picture
Replies 2
Last reply 12/24/2010 - 4:32pm
Replies by: JakeinNY, nicoli

If you are battling Melanoma or caring for someone who is battling Melanoma, this book is a must read.  Joe Fornear battled Stage 4 Melanoma and was given days to live.  Now he inspires and comforts those who are going through the same battle.  Joe and his wife Terri have been such a comfort to Eric and I that I felt I needed to share this with you.  His story will give you hope.  I read his book in 2 days (only because I had to go to work or I would have finished it in one day!).

http://www.mystronghold.org

Jill N Eric In OH

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Tracey FL's picture
Replies 4
Last reply 12/26/2010 - 11:10am

I have not been on for a few months.  Mom has been going to Moffitt for two different trials PD-1 and fluradarbine (sp) they failed.  The tumors have spread to the brain.  She had the radio knife done two weeks ago on three of her small brain tumors.  We just found out that she has more brain tumors.  She has more tumors in the body cavity and on the neck rather large ones.  The Drs want to do whole brain radiation now, 5 days a week for 4 weeks.  She is now on Chemo and no longer at Moffitt, they sent her home for the chemo since it can be done in South Florida She is still doing rather well but I have started to see her get weak  not in to much pain (most of the pain is from some back problems).  Her hair is gone and she has lost 20 lbs.  I don't know what to do.  Mom has been fighting this stage lV since March.  I want to do the best thing for her, and it seems that her options are running out.  Has anyone been at this stage and been able to go back to some trials?  Has anyone done a BRAF or any of the others I see on this web site talked about at this stage.  I feel that I am loosing hope.  She says that she just does not want to travel any more.  I think that is why I feel helpless.  I am sorry that I am rambling on.

I pray for everyone with this.

Tracey

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LynnLuc's picture
Replies 4
Last reply 12/26/2010 - 12:29am

Had my MDX 1106 and then the 6 injections of the peptides yesterday. I have thyroiditis caused by the MDX 1106 and was put on Synthroid...told it's not a problem and that its just an auto immune response. Was told my reaction is what is seen in IL-2 trials and is seen as having a positive reaction...ugh...side effects good news...bah humbug LOL. Hoping  to have some energy one of these days and hope to go back to work...SSDI doesn't pay the bills and the trauma of all of this...I would just like to move on and "pretend" I am normal again- at least for awhile!! When the total income of the household is 1350 a month and medicaid wants you to pay over 1000 a month first- you know our society is broken....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Vermont_Donna's picture
Replies 14
Last reply 11/23/2011 - 4:54pm

Hi,

Had Round two of Ipi yesterday. My oncologist thought he saw some pigmentation changes in my skin (looked me over with a blacklight) and he said that was encouraging. Also he did agree that all my melanomas (2 dozen or so) on my leg and the sub-q's are all bigger ie inflamed and that if we are thinking on the hopeful side this would be a good sign as tumors get inflamed before withering away.....of course the dark side would be I have more melanomas and the ones I have are bigger and growing. But we are going to choose to think positively! The infusion went well, I fell asleep again and my ffriend who drove me and my mom knitted and chatted away. once awake I had a reiki session and some lunch! Everyone is so positive and so warm but professional too!

My wounds are not cleaning up that well with the enzymatic debrider (Santyl) but we are going to try one more week before going to surgical debridement. I am having more pain in my calf and cant lay my leg on the bed to sleep, have to lay on my side with pillows between my legs to give "space" between my calves....cant have anything touch my calf as the wounds are too painful and throbbing. My oncologist drew two lines around one of the wounds...one round the really red part and the second one further out, around where the redness ends. If the redness exceeds the lines I am to go to two of my antibiotics a day instead of one and call him.

So thats the update. Wishing you a very Merry Christmas and Happy Holiday for those who dont celebrate Christmas.

Vermont_Donna

stage 3a, have done many different treatments, currently doing an clinical trial of "Ipi"

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Rocco's picture
Replies 16
Last reply 12/29/2010 - 6:32pm

Received word yesterday that my latest CT and MRI show no signs of mel.  I feel quite blessed to still be here some 5+ years after the Stage IV diagnosis.  This is the best Christmas present ever.  Merry Christmas everybody! 

Luke 1:37

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emilypen's picture
Replies 5
Last reply 12/28/2010 - 2:49pm
Replies by: Jan in OC, molly, Terra, LynnLuc

HI All,

My husband has been on a MEk/P13k inhibitor study for the past 4 months. Today he had his 4 month CT scan ( protocol is every 2 months) and his doctor just called to say he had seen the scans and everything looks great!

We won't get official measurements on any reductions until Jan.5th but just knowing that the drugs are still working is amazing. Last time is was 12% reduction and this time we're hoping for more.

It is so nice to have him close to his old self again, to see him able cut his pain meds in half, and to know that this Christmas we will sleep easy.

 

Happy Holidays to all.

 

Emily

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ckotyluk's picture
Replies 1
Last reply 12/23/2010 - 3:57pm
Replies by: Bonnie Lea

I just wanted to say I've been following this forum for the last 9 months.  I've cried while reading how horrible this disease can be!!  What I've read has helped me deal with Dennis's disease and how I can help him.  My husband skipped all of the first stages and went right to the Stage 4.  Since then it's been a whirlwind of emotions and doctors appointments.  He did the 1 month of Interferon and now is on the 11 months of shots at home.  He has a phobia of needles so it has been pretty hard on him.

Our doctors don't tell us much so what I've learned off this site helps me ask the questions that need to be asked. 

I'm hoping and praying for each and everyone of you!!

Have a Merry Christmas!!

Christie

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Linda J's picture
Replies 3
Last reply 12/23/2010 - 7:10am
Replies by: kthekhal, King, nicoli

Arg - my husband took yet another afternoon off work to drive me to Toronto for my scheduled  CT scan.  But stupid me did not read the prescription for the drugs I needed to take as I am allergic to CT contrast.  I didn't realize that I had to take one of the pills 13 hours in advance.  So after drinking all the barium and driving through rush hour traffic, we simply had to turn around and go home. 

At first I was really upset and this morning I felt hopeless.  My MRI isn't until the 16th of Jan. and I feel like that is unbearably far away.  I left a tearful message with my Onc. office asking if I could possibly get an earlier date.  I just want to get on the battle plan ASAP.

This afternoon I feel like I have a renewed out-look (although I know my emotions rise and fall per hour).  But truly I feel like I'm going to beat this bastard disease. 

I have a tangible miracle running around my house every day that is a reminder of the fact that I will fight and will win against melanoma. 

Our adopted son is, beyond a doubt, a message from God saying that my long term job is to be his mom.  There are so many crazy circumstances surrounding his adoption that make be believe that God has a good plan for our family.   The fact that he was even born is a miracle in itself.  Here are just a few of the other miracles that took place in our coming together as a family:

We only had to wait 21 days from the end of our home study to the fated phone call about him.  Most other people who adopt through Child and Family Services wait months, if not years. 

We were the only couple considered for this perfect little guy - in CAS it is very common for couples to be interviewing for children they are interested in along with several other couples who are also interested in the same child.

I started praying for him when I was lying on the radiation table for a spot on my axilla in 2008 - that was the exact time he was born (originally his birth mom had planned an abortion)

The day we got the call about him, my mom had prayed that we would hear from CAS - we were only expecting them to say they had received our file and that we were on their list.  Instead they had a child they wanted us to consider.  We met him a week later.  What a meeting!!

The day our son came to live with us was Oct 15  - our tenth anniversary (of being together, we have been married for 6 years). 

I do not have the right to "whoa is me" and give into this scary disease.  I have to fight.  I have to live.  I was commissioned with the crazy wonderful and important role of being the mother to my perfect, miraculous son.   There was no mistake when God decided to bring us together as a family.   Our son could have been adopted into any other wonderful family out there.  We could still be waiting for our adoption - although I believe that if we didn't get our son when we did, we would never have children and I would never be a mom.   I was meant to be his mom!

Thank you so much for the "pick me ups" that I received earlier on this board.  Your strength gives me strength. 

So even though I am still dealing with LDN of the groin and the fearful event of new subq nodes popping up, I am ready for the fight.  I will win.  The battle is on but I am the determined winner.   I'm not going to let this stupid disease get in the way of enjoying Christmas with my beautiful family. 

I know that there are more miracles to come and I hope that your holiday is also filled with miracles and hope. 

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This story came across google alerts today.  I bought a ticket.  Get em while their hot

.http://www.eventbrite.com/event/1085814701/?invite=&err=29&referrer=&discount=&affiliate=&eventpassword=

Insert Generic Inspirational Motto Here

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himynameiskevin's picture
Replies 17
Last reply 12/22/2010 - 9:33pm

Well, I just got back from Maryland two nights ago. The treatment was a bit worse than I had expected... well at times.. It was really rough, but I think I handled it pretty well. Partially from being out there alone and partially because I unfortunately got some sort of stomach bug (somthing I ate) a few hours before I even started the treatment. This is actually what made the treatment tough. If I was feeling well, I bet I would of made it through a lot better and posibbly turned some heads but I was throwing up before they starting dosing me up with the stuff that makes me throw up.... The 2 and 5 days of chemotherapy were pretty unpleasant just because of that. I had no appetite, and was really hard to keep food down, but a nice lady from nutrition came to me as well as my Dr and they had many helpful suggesstions as far as the whole eating thing went. Amazingly I only lost about 6-7 pounds and since about 5 days ago my appetite and been better than ever. Weight's probably close to normal again. Anyway on day 7, I got my cells, a total of 51.7 billion. Then I did 7 bags of IL-2. I was really hoping to do a lot more and thought I'd have no problem like here in San Diego but I started getting a lot of fluid in my lungs. (sounded like bubbling water when I would breathe) It was the only side effect I got from the IL-2. The only one. :/ So they stopped me at the 7. I was a little dissapointed about that. I had my mind set at another 14.

Anyway, at that point I was neutropenic and they spent the rest of the time getting my lungs back to normal, growing bone marrow, keeping fevers down, infections controlled, getting my immune system back and my white blood numbers back to normal. Which they seemed pretty impressed to see came back at an amazingly fast rate. I was actually able to come home 5 days sooner then expected. They actually released me the day Brenda got there.. :/ But because her plane ticket wasn't for 4 days, we had to stay in town for a few days. Then we came home. And here I am now. Sitting in my living room next to Brenda and our first Christmas tree. :) Relaxing. it's weird how laying in a hopsital bed for 2 1/2 weeks can take so much out of you. I did lose some hair, it's kinda thin, everywhere. I buzzed it off and can't really tell if it's coming or going, my eyebrows and eyelashes are pretty snug, if you didn't know me or what was going on you wouldn't even notice. They said my hair will come back soon since the chemo is just a one time thing, but that's the least of more worries at this point. Now just hoping and praying for the best. I go back on Mid-January and once a month for 6 months from what I understand to get scans and see if this stuff is helping me. I hope it does. I feel fine and optimistic and almost every moment of every day I'm in good, happy, normal spirits. On a scale of 1-10, I'm an unabashed 8.9.. But you know, sometimes I'll get a random ache or pain somewhere which is probably nothing, but paranoia will mess with my state of mind and remind me of the seriousness of the situation. :/  But I'm really pretty good. I have this week to relax and get my energy back and on Christmas, Brenda and I are going to drive up to Palm Springs/Indio CA where we'll spend the day with my aunt, uncle, my two cousins and their wife and husband, which will be really nice. They're a group of people who've been the most closely supportive and helpful through all of this and it'll be great to see them. Then next week I'm going to try and pick up some shifts at work and get back into the normal routine of things. And that's it. Just continue to manifest/hope/pray for a positive result...  :)

I hope everyone on here is doing well. It's good to be back. Merry Happy Christmas Holidays to everyone. And here's to happy healthy New Year to all of us. Cheers.

-Kevin

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