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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Eileen L's picture
Replies 4
Last reply 8/19/2011 - 1:27am

The other day I posted that after a stable scan, I thought I felt something in my right groin that seemed to me to be a swollen lymph node. Went to oncologist yesterday, and he was very certain that what I was feeling was not a swollen node and after talking to him about it, and feeling my groin about a million times more, I do believe he is right. I 

What we did find was something on my neck, which felt to him like a calcified carotid artery! So now I am off to my primary care doc next week to see what she thinks, and possibly get a ultrasound of my carotids. Given that there is a history of arterial disease on both sides of the family and I have a tendency for high cholesterol levels, it certainly may be that I have something happening there!

If it ain't one thing its another!!!!

 

Eileen L

Stage IV

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Our doctor has advised me to tell my daughter now that my husband is going to die from his cancer.  I am so in over my head and need help.  She is an extremely intelligent young lady, and knows that we have been fighting this battle without much success, but I don't know if I can say the words to her or even what words to say.

Any suggestions would be much appreciated.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Jan in OC's picture
Replies 9
Last reply 8/19/2011 - 5:41pm

Dirk decided to go ahead with the brain surgery for the biggest tumor.  It is scheduled for Friday at MD Anderson.  The doc will harvest the tumor for t-cell trial along with tissue from his side.  We hope that it will be successful and grow new t-cells. We need to do a bunch of pre-surgery stuff tomorrow.  After recovery, in a couple weeks, they will zap the smaller three (hopefully) and then start him on temodar or Bio-chemo (not sure what Dr. Papa will go with).

On a good note, we are signing a lease on a house in Katy tonight. The owner has stripped the flooring and is installing new tile and carpeting, paint and cleaning.  Hopefully it will be ready to move into Saturday or Sunday.  Then I can bring Dirk to a more comfortable place on Monday when he is released form the hospital. I was worried about bringing him back to the hotel for recovery!!

He is a little upset that I will be doing the unloading & moving on my own.  He is worried about how I will get his motorcycle off the U-haul without damage.  I'm worried about driving a big 26 foot truck!!   Just need 3 or 4 BIG guys to unload the truck!!

Gonna be a crazy weekend for me!!!   

Jan (wife to Dirk, stage 4)

laughter is the best medicine

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DeniseK's picture
Replies 2
Last reply 8/17/2011 - 7:17pm
Replies by: JerryfromFauq, DeniseK

I got my blood work back finally!!  The infusion center gave me the results but didn't go over them with me. 

Everything was within normal range except:

Glucose-High-116

MCH-High-33.6 (just over the normal range of 33.0)

Band Neutrophil-High-15 (normal range 0-10)

From what I found the band neutrophils could be high because of a bacterial infection or cancer!!  Is this true??  I have no infection that I know of. 

This blood work was done last Saturday before the Interferon started.  The LDH level came back 166 (range 81-234) so that's good. 

Just wondering what that means! 

Thanks!!

Denise

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

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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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