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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KellieSue's picture
Replies 6
Last reply 8/19/2011 - 7:16am

Had scans on July 22nd. Been taking B-RAF(now Zelboraf) since February. My scan showed some shrinkage and some growth. It was a little scary for awhile because I had to wait all weekend for my dr. to measure my tumors. It ended up only being 6% growth overall! Yah!

I'll continue to see my dr. every 3 weeks and have scans every 8 weeks(I think) I do seem to have a neutrophil problem  at times. I dip down as low as 1200(they have to be at 1500 to continue taking the drug) I get off the drug for a few days(a week at the longest)get retested and am able to continue taking it again.

My side effects have been very minimal, imo.

Thanks for sharing in my good news!

Kellie(from Iowa) Stage IV, on Zelboraf since Feb. 2011

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

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newmanmark's picture
Replies 6
Last reply 8/17/2011 - 8:52pm

Hello everyone,

I want to give an update.  In my last post I was concerned about abdominal pains and that it may be a reccurence in the liver.  Well the CT scans showed nothing!  It was a huge relief to get this news.  I am going to be monitored now on a regular 4 month schedule.

The reason I write this time is because I have been seeing a well known Integrative Cancer Specialist here in Toronto and he is recommending that I start mistletoe injection therapy.  He believes that it can be effective for many types of cancer and said that it is commonly used in Europe.  I know a lot of you will get all worked up at the idea of a natural therapy but I am looking for educated opinions on whether this is worth while.  I am willing to try anything at this point to prevent the cancer from recurring. 

Has anyone out there gone this route?

Thanks

Mark

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Tim--MRF's picture
Replies 9
Last reply 8/19/2011 - 10:16am

The FDA approved the Plexxikon/Roche/Genentech BRAF inhibitor this morning, months before when they had to do so.  This is a great breakthrough in a number of ways:

--two drugs approved in one year after 13 years of nothing being approved

--approval of "targeted therapy", a different way of attacking melanoma than anything else that has been approved

--rapid approval by the FDA

All indications are that more drugs will be in the pipeline for approval in the next few years, so the field truly is changing.  This all has a long way yet to go, but progress is so very much better than no progress!

Tim--MRF

 

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KellieSue's picture
Replies 4
Last reply 8/18/2011 - 6:46pm

http://www.reuters.com/article/2011/08/17/roche-zelboraf-idUSN1E77G0BW20110817 

 

I didn't know it would happen so early, I'm excited. I cannot believe 2 drugs have been approved for melanoma after 13 years of nothing!

I worry though, I'm in a clinical trial. Do I continue to be in it? Or does this just mean they'll be no more new trials starting with B-RAF?

 

Kellie(from Iowa) Stage IV, on B-RAF

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

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hello everybody,

i dont have any news but wanted to post smth!there is not a day that i m not here!all of you are giving me hope and streght.even thow, i feel like i m running out of time, i feel that i dont have enough time to do things that conclude my mother in.i want to get married and have children and i want my mother to be there!to be happy!i want o "hole" lifetime with her not just a part.....i dont want to be selfish, i just want her next to me, to share with her everything.if i am away from home i m callingonce a day to she if she is ok, i m thinking all the time that smth will happen..

before one month we found out that she has 2nodule (3mm and 4mm) stable at her lungs (we didnt knew that they was there until the doc told as that they were present and at the previus ct, three months before) and the ond said that meybe isnt smth.The oncologist t  hought that have palpate a lump at her neck but she did an ultrasound and there was nothing.Although athe arm with te full axilary disection, she dosent have lemphydima, but she has pain near her breast and its swollen when she wears a bra, the doc said that its from the oparation and it want time to heal.

 

so NED!!!!!!

i m so thankefull to all of you, if you werent here i must had gone crazy for sure!

best wishes to all of you, you are in my prays

 

DiRena

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AZ_Gal's picture
Replies 6
Last reply 8/21/2011 - 2:17am
Replies by: AZ_Gal, mombase, lhaley

RecOvery is going pretty well no major complaints but the healing process kinda sucks. At 8 days post op I had to unexpectedly have my sutures removed from my WLE bc according to my local pcp (not my surgeon) I was having some sort of allergic reaction to the stitches. Since then I have been paranoid of doing something and having them reopen... Probably a long shot but I definitely don't want to go through more stitches. My SNB site is healing nicely except the steri-strips they used came off way early because how the heck do you keep your armpit hair from growing and pushing them off. Lol. I do have a ping pong ball size hard lump at the SNB site and will have my surgeon take a look on the 18th when I go in for a post op visit.

Oh did I mention that everything came back free and clear of cancer cells? Yay!!!!! I know that it could rear it's ugly head anywhere at anytime but for now it is a comfort knoing it is gone from my body and I get to be here and not be sick for a little bit longer.

Just thought I'd give y'all an update. Thank you guys for all the love and support; I REALLY APPRECIATE IT!!!!

-Kim

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ockelly's picture
Replies 1
Last reply 8/17/2011 - 10:43am
Replies by: DeniseK

My husband has just hit the half way point in his Interferon year.  One of his most nagging side effects is a constant ache in his lower back.  He gets so much relief from a new heating pad that we ordered online that I thought I'd share the info.  Its a moist heat.  He goes immediately to it after work everyday.  

Thermophore Deep Heat Therapy Pad    www.battlecreekequipment.com     800-253-0854

Its expensive (about $100) but has been so worth it to him.

Kelly

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deardad's picture
Replies 4
Last reply 9/1/2011 - 2:06pm

Hi everyone just wondering what has worked for liver and spleen mets? Blood work all ok so the tumor burden is low, but he (my dad) just had a craniotomy for a single brain met. Anyone doing well and was in the same boat?

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Anonymous's picture
Replies 4
Last reply 8/18/2011 - 4:15pm
Replies by: Anonymous, Wendi Lynn, Donna M., eaca

Interferon is one of the most divisive subjects, it seems.  I appreciated the pros and cons as we were making a decision for my husband, but it seems to be one of those treatments that can bring about extreme comments. Let's help each other make informed decisions, not tear down when people are already at a tough spot in life.

My husband did interferon for 10 months, and, while it was hard, we don't regret it for a moment.  He is one that has done well, so far.  Was it due to interferon?  We'll never know, but he's still here, and we really had expections of something much worse than what we have.  His was extremely deep, lymph nodes matted, and is 3C.  He has been NED for over 2 years, and we're thankful for every doctor, surgery and treatment that helped him achieve this.  Even with a different outcome, I probably wouldn't feel we had done the wrong thing.

Has it been easy?  No.  He worked half days, and could barely make it home.  He has ringing in his ears, and it took about 7 months to really seem like himself again.  He wears down quicker, but so do I! 

The important things have already been mentioned....anti-depressants, huge amounts of water, bananas, family support, and discipline to keep some manner of normality.  He also needed some anti-anxiety medication, can't remember what it was. 

I do believe that if you really trust your physician and he recommends it, he probably has a reason for it.  Ask him why he suggests interferon rather than something else, and listen to what he says.  Interferon keeps coming back up here, so, obviously, melanoma oncologists aren't ready to throw it out the window.

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Angela C's picture
Replies 3
Last reply 8/17/2011 - 11:55am
Replies by: Jan in OC, kylez, Angela C

Hi everyone.

I will be having sterotactic radiation for a 2-3mm met in my brain. I am having it at Loyola in Chicago and they have a Novalis machine. I'm a little freaked out about the procedure and the frame that is attached to my head.

I'm hoping that those of you who have experienced radiation with Novalis can give me some info about your experience. I don't quite understand how the head frame is attached. Does it hurt?

Did they give you anything to help you relax? I do okay with my CT and PET scans, but I'm a little freaked out about having a cage attached to my head all day and wondering if I need to get an anti-anxiety pill that day.

I'm told that I will probably lose some hair because the met is very close to the top of my head. Did you lose hair? How much and how quick did it grow back?

This is the first time any

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

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Replies by: AlanM, Lisa13

Over the summer I have received high dose(50 grams) vitamin C infusions twice a week. Last week I stopped because I was concerned about possibly multiplying the GI effects of ipi by taking the vit C. (I have my first ipi infusion tomorrow) The problem is that I am definitely feeling less energy and overall more poorly after stopping. Has anyone here had the Vit C infusions while also taking ipi? If so, any info on how the two coexisted would be appreciated.

Alan

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fowlera1's picture
Replies 16
Last reply 8/24/2011 - 5:17pm

Hello, My name is Andrea, I am 39 years old and was just diagnosed with stage 4 melanoma.  I have two nodes in my lungs, one that is 3 cm and one that is 2.3 cm.  After meeting with the medical oncologist today, I have a decision I need to make:  IL-2 or Yervoy.  I was wondering if anyone has been treated by these and could give me any input.  I really appreciate any feedback b/c I am totally sitting on the wall b/w the two.  Thank you in advance for any help you can provide.

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/22/2011 - 9:01am

Hello all - My first post.

17 years ago had mole removed on my back, which was melanoma. Last month had mole removed on my chest. metastatic melanoma. PET and CAT showed nodule on lung 1.5 cm. Both oncologist and thoracic surgeon said not Mets. It was. Surgery for Thursday for wider excision of chest mole at which I am NED.

Oncologist says do nothing but revisit every 3 months with scan. 20% chance it will never come back.

So, with 80% chance it will return, I am wondering if the wait and watch is standard protocol, or if I can be more proactive. Not that I want to do toxic treatment for nothing, but waiting is hard also. Thanks for your thoughts.

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DeniseK's picture
Replies 17
Last reply 8/18/2011 - 2:03pm

Hi all!!
I mainly wanted to post for those of you getting ready to do Interferon. I saw Donna is feeling very anxious and nervous about starting. I saw some people have said things to her that is seriously uncalled for. These things were also said to me. It only created more fear where there was already enough fear! If I could give any advice to those of you thinking about Interferon or getting ready to do it, please don't listen to anyone but your own heart and your doctor! Having said that, here's my first experience.
It started on Saturday getting my PICC line installed. The picc line doesn't hurt going in!! They sent me over to the hospital to get a chest xray to be sure the line was put in right. The process only took about 2 hours total, it's a very sterile process. The PICC line will only stay in for 1 month during high dose then come out.
My first infusion was yesterday. The infusion center in my area is comfortable with tv's and headphones. You can bring in your laptop or a book, they have a refreshment center with soda's, water, and snacks. The nurses have been doing this for years and make you feel really comfortable.
They gave me 2 tylenol orally, then hooked me up to the IV for the saline, anti-nausea, and benedryl medicine. Next is the Interferon. I felt a little sleepy from the benedryl. They gave me 40 million units of Interferon. I felt fine leaving the facility and went to the store to get some water and soup. Bad idea! I should have went straight home because in the check out line I started feeling nauseated. Not bad but I wanted out of there! I made it home and walked straight in to bed. The side effects took about 1 1/2 hours to kick in.
I had a fever of 101.8 at the highest, chills, and body aches. This lasted about 5-6 hours but I was sleeping most of the time. I slept about 12 hours last night and woke up with body aches and a slight headache. The chills and fever were gone.
I go back in today at 2pm. This time I'm doing my errands before I go in so I can come home and lay down.
I would have to say that all and all it wasn't as bad as I thought it was going to be. I have a weird taste in my mouth, that was the first thing I noticed. I'm taking everyones advice about drinking plenty water and I got some bananas.
This morning I've been playing frisbee with my dog and getting ready to take a shower to do it all over again.

They keep a close eye on you with blood tests every week for the first month and once a month after that so if it becomes too hard on your body they'll reduce the dosage.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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ccbreeding's picture
Replies 1
Last reply 8/16/2011 - 12:00pm
Replies by: Janner

I was diagnosed almost four years ago IIIA.  My original site was on my shin.  I had the LND and have been NED ever since...Praise God!  I was "friends" with Amy Busby and oh how I miss her!!..I remember her mm came back after being NED for 6 yrs and it first appeared in her various lymph nodes.  So this is one reason I am concerned.  

I have one slightly enlarged node in my neck (assuming it's from allergies).  When I feel under my arms I feel several nodes...I can only feel them when I use the same hand as the arm vs reaching across my body.  This seems a bit weird.  They are not huge, probably the size of almonds??  My next check up is in Oct...cant decide if I should just wait or look into this sooner.

Anyone have any experience with enlarged nodes?  What did they feel like?  Where else would I notice nodes?  Sorry this is so wordy:)

Thanks for any insight!
Courtney

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