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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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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Carmon in NM's picture
Replies 6
Last reply 12/21/2010 - 10:05am

I'm on a carbplatin/carbotaxil, temodar phase II trial after advancing to stage IV with brain mets and an adrenal tumor last summer. After two infusions 28 days apart the full body CT scan and brain MRI done on the 15th show no new tumors and the adrenal tumor has shrunk by more than 50%! A spot on my left lung that my onc does not think is a met had also shrunk from 9mm to 6mm so whatever it is, it's getting smaller too.

This is so fantastic! I was having a rough time with side effects but I went into today's infusion with a whole new attitude! My blood work was all really stong with no indications I am having problems with the protocol so after this third infusion, I will have three more every 28 days and at the end, surgery to remove the adrenal gland.

I hope everyone else is blessed with good news for Christmas! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Jan in OC's picture
Replies 24
Last reply 3/4/2011 - 1:24pm

Just got back from UCLA with my husband.  Results of his latest CT were not good.  Some of his mets in his liver/lungs have doubled in size and small ones that were not even measured before are a lot bigger.   Doc immediately pulled him from BRAF.  We had almost a year on this drug, but it's time to move on!  Doc gave us some future options, but seemed to be pushing for option 1 over the others and I would like some advice. 

Option 1-Eisai clinical trial of E-7080 (VEGF)  supposed to shrink the blood vessels to the cancer cells???   We cannot do this if we choose any other treatment option before this one. BUT, I have not seen a lot about this on the board and am asking if anyone has experience/info?

Option 2- Compassionate IPI Trial

Option 3- Chemo

Option 4-IL-2

Option 5-MEK / PI3K inhibitor (doc said phase 1 trial, low doses only, may not be effective). 

We are supposed to go back  first week of January with a new plan, so any suggestions/advice would be appreciated.  My husband is pretty bummed right now and my emotions are all over the place!  Getting as much info as I can and having a plan will help.

Thanks

Jan

 

laughter is the best medicine

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/25/2010 - 9:31am

I would like to know how bone mets are detected???? Is there a special scan??? How are bone mets detected?

Thanks You for your reply, Douglas (wife Julie stage 4)

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Rea's picture
Replies 1
Last reply 12/20/2010 - 8:53pm
Replies by: emilypen

Hi everyone,

My husband has a bone met on near his knee tibia area.  They are suggesting radiation.  Any one have experience with this?

He's Stage IV and has been battling going on 9 years.  It keeps coming back, but within the lasts year it's become more persistent.  Any info you can give will be appreciated.

Thanks.
Rea

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yensidw's picture
Replies 3
Last reply 12/22/2010 - 7:24pm

This will be a tough one for me since losing Ron in August.  I thank God that He has blessed me with wonderful family and friends who have been my angels on earth.

For everyone battling the beast I wish for you all to be NED.  For all of us who have lost someone this year or in the past, I pray that you will find peace and strength.

Merry Christmas, all, and a happy and healthy new year.

 

Janis

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Linda J's picture
Replies 9
Last reply 12/22/2010 - 1:31pm

Hi survivor family

I'm six weeks out of surgery that removed 10 lymph nodes (5 positive) and a larger tumor around my hip/bum.  I have had local reoccurances since the surgery and I am freaking out.  I have a CT scan and a brain MRI this week but I am in a complete funk while I'm in the "in between". 

I have all kinds of weird feelings and pains and twinges that I'm now thinking is the cancer spreading all over - my body is a stranger to me. 

I will likely start a some kind of clinical trial in the new year but I am feeling like I'm finding a new subq like every 4 days and what if my body doesn't make it until the new year?! 

I'm BRaf positive and my PET scan in September was clear (minus the tumors in my groin/butt they already knew about). 

I'm trying to hold it together for my son (2 years old) and family over the holidays but I really really just need some positive stories to know that it is possible for me to make it to treatment and then beat this devil disease once I'm in treatment. 

If there is hopeful stories out there, please send them my way!

Thanks!

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akls's picture
Replies 6
Last reply 12/22/2010 - 6:38am
Replies by: MariaH, King, NancyGM, Phil S, Fen

Yesterday was the two year anniversary of the day I got my phone call from the dermatologist that I did have a 2.1 deep melanoma.  Since then I've had two surgeries and a year of interferon.  I'm doing well so far.  Clear PET in July.  Keeping my fingers crossed that I'm done with melanoma.  Wishing everyone a happy holiday season.  Enjoying my first Christmas in two years.  Praying we find a cure for this soon.

Peace and Love

Amy S. in Michigan

Stage IIIA 5 1/2  years NED Completed 1 year interferon 2009.  God is Good.

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