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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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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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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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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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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Erica A's picture
Replies 6
Last reply 8/17/2011 - 3:50pm

My husband is Stage IV, NED 6+ years now.  Only follow-up treatment he has these days are yearly liver panels and a chest x-ray.  Oncologist called last week that his liver panel came back abnormal - they are going to retest and said not to worry because they think it's probably a lab error.  Hmmm.  As a stage IV cancer patient we are used to some bumps in the road that turn out to be nothing, but have never had a lab error anywhere else - does this really happen?  Has this happened to anyone else?  Trying not to worry, but obviously a little concerned.  Thanks - Erica

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mygirlmaddy's picture
Replies 9
Last reply 8/17/2011 - 2:00pm

My husband is stage IV with 3 subcutaneous and1 internal tumor.  We have tried IL-2, Ipi, he is B-Raf wildtype, and does not qualify for TIL due to a steroid dependency thanks to side effects of the Ipi.  He is undergoing radiation to try to shrink the tumors and our oncologist at home is recommending Temodar after radiation is done.  She has been clear that neither radiation or Temodar are consider cures.  Does anyone have suggestions about treatments not mentioned here?  I am at a loss.  My husband's records have been sent to NIH by our oncologist in Boston  and came back with no suggestions.  I don't want to look back at this and feel like we didn't do everything we can.  I can't think of a more knowledgeable bunch than those of you in the thick of it with us.  Thanks for any suggestions.

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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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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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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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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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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gossteach's picture
Replies 8
Last reply 8/17/2011 - 12:05am

Seems to be quite a few people starting interferon in the upcoming weeks. Maybe we could se up a time to "chat" with those who have been through it. I've only done the chat thing once, but it might be a good way to support eachother. Any takers?

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I've not posted for a long time, but I've been on MPIP on and off since 1997.  I was stage IV NED for 10+ years, until diagnosed with multiple bone mets and sub-q 3 months ago (boo hoo - but that's life).

I went to the Angeles Clinic to see Dr. O'day, and after positive typing for BRAF, I was randomized to the BRAF/MEK combo trial (with the highest level of MEK).  I have been taking the drugs since last Thursday, and so far zero side effects.  I'm just wondering, for those of you who are on BRAF and/or MEK, when did any side effects begin?  We're going on a cruise next month, and I certainly don't want any nasty stuff happening then.

Thanks in advance for your responses,

Harry

Too ugly to die!

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mclaus23's picture
Replies 4
Last reply 8/16/2011 - 7:43pm

Hi All,

 

My dad, Stage IV mel with mets in the adrenal glands, began ipi 5 days ago. He is in extreme abdominal pain and had night sweats last night. Dr says this is an indication the ipi is working. Has anyone here had  this experience?

He also said the tumor on his groin is slightly inflamed and sensitive to touch.

 

Thanks in advance for your input!

Maggie

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Becky C.'s picture
Replies 7
Last reply 8/16/2011 - 6:07pm

Hi, I was hoping to get some more feedback from anyone who has had a groin dissection.  I heard from one person who said they did get lymphadema. I am planning on having the surgery next week, I am really worried about lymphadema but i think it is the only way to know if all the cancer is gone. I have read that about 10 to 15 percent of patients who have this done get lymphadema. I appreciate any feedback.

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nicoli's picture
Replies 10
Last reply 8/16/2011 - 1:28pm

I may be the newest stage 4. saturday I had trememdouspain in my side/back and within one hour was in ER.  Everyone thought it was a kidney stone, so did I cuz I had had one before.

CT showed mass on adrenil  glands which sit on kidney. Also possible lung nodules. I spent sat and sun drugged out for pain relief. Today, MRI and CT. No results yet but those who saw the ihitial reslts have no doubt. Waitig for the official word from my onc.I will cry for awhile and then make a plan.

Nicki

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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