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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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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Phil S's picture
Replies 6
Last reply 9/6/2011 - 3:56pm

Robert posted back the first week of June that he was going to do the biochemo treatment in California. I was following his posts during his decision making, and have been hoping he had good response. If you get a chance let us know how you are doing? Valerie (Phil's wife)

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Ashykay's picture
Replies 6
Last reply 8/16/2011 - 9:41am

Hi all,

Just thought I would provide an update after my Mum's oncologist appointment today.

All in all, it's not great. The oncologist would like to keep her CT scans to ensure that the growth didn't actually occur prior to the radiation, and whether or not the radiation has affected the density of the tumour, although this doesn't appear to have reduced the tumour on the outside. I think realistically we can take from this however that the tumour has grown and radiation wasn't successful at all. We are praying to be proven wrong.

Options from here on - although Mum's biopsy tested negative to c-kit positive gene mutation, the oncologist seems to still be pushing the Gleevac due to the c-kit staining. Dad and I tried to raise some immunology treatments such as Yervoy with him but he was incredibly dismissive of it and recommended Gleevac still. He back pedaled again then by saying that he needs to get access to the drug - he had basically guaranteed us weeks ago that this would be accessible, even if Mum didn't have the biopsy tested for c-kit positive. Quite po'd at this. He has recommended us to an immunologist to see what his opinion is, but he was very discouraging of this approach due to teh side effects involved with immunology drugs (which I understand).

Dad and I have concluded that he oncologist takes the safe approach....he was disinterested in any experimental treatments, trials and the like. Dad and I will continue our search...we're going to try another oncologist - our aim is to find someone who is willing to go out of their way to help us find something (be it experimental or not) and be more aggressive with respec t to treatments. We really don't have any other options.

I suppose then we will consider whether a move to the United States could be considered on the basis of the trials they have going over there....hopefully Dr Hodi will get in touch, even if we could teleconference options or approachs which we could try access through Australia.

Anyway so that's my update. I'm not sure what to say to Mum at the moment...Dad and I are speechless. I had a good cry when I got back to worka fter the appointment, and trying to move on now as best as I possibly can.

Ashley

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Has anyone developed pancreatitus after taking interferon   I did after being on it for 3 months, Just trying to figure out if that was one of the nasty side effects that can ocurr

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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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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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Anonymous's picture
Replies 1
Last reply 8/15/2011 - 9:55pm
Replies by: bcl

ABC News link

 
 
 

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Science Daily
Frequent Tanning Bed Users Exhibit Brain Changes and Behavior Similar to Addicts, Study Finds

ScienceDaily (Aug. 10, 2011) — People who frequently use tanning beds may be spurred by an addictive neurological reward-and-reinforcement trigger, researchers at UT Southwestern Medical Center have found in a pilot study.

This could explain why some people continue to use tanning beds despite the increased risk of developing melanoma, the most lethal form of skin cancer. The brain activity and corresponding blood flow tracked by UT Southwestern scientists involved in the study is similar to that seen in people addicted to drugs and alcohol.

"Using tanning beds has rewarding effects in the brain so people may feel compelled to persist in the behavior even though it's bad for them," said Dr. Bryon Adinoff, professor of psychiatry and senior author of the study available online and in a future print edition of Addiction Biology. "The implication is, 'If it's rewarding, then could it also be addictive?' It's an important question in the field."

About 120,000 new cases of melanoma are diagnosed in the U.S. each year, according to the Skin Cancer Foundation. People younger than 30 who use a tanning bed 10 times a year have eight times the risk of developing malignant melanoma. While public knowledge of these dangers has grown, so has the regular use of tanning beds.

In this study, participants used tanning beds on two separate occasions: one time they were exposed to ultraviolet radiation and another time special filters blocked exposure to ultraviolet radiation. Participants did not know on which session they received the real or the filtered ultraviolet exposure. At each visit, participants were asked before and after each session how much they felt like tanning. Participants were also administered a compound that allowed scientists to measure brain blood flow while they were tanning.

Dr. Adinoff, who also is a staff physician at the Veterans Affairs North Texas Health Care System, said the next step is to create technology to further study brain changes among frequent tanners.

Other UT Southwestern researchers involved in the study were Dr. Heidi Jacobe, assistant professor of dermatology; Dr. Michael Devous, professor of radiology; and Thomas Harris, senior research scientist. Former dermatology resident Dr. Cynthia Harrington served as lead author.

The study was funded by the Department of Dermatology at UT Southwestern. Dr. Steven Feldman of Wake Forest University donated the ultraviolet radiation filters used in the tanning bed, and GE Healthcare donated the radioligand, the compound that traced the brain changes.

 
 
 
 
 
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Advertisement


More Evidence Tanning Beds May Be Addictive
In the presence of UV radiation, reward centers in the brains of 'tanorexics' lit up, study found

 
By Denise Mann

HealthDay Reporter

MONDAY, Aug. 15 (HealthDay News) -- Frequent indoor tanners may exhibit brain changes that are similar to those seen among people who are addicted to drugs and alcohol, according to a new study that adds to a growing body of evidence suggesting that indoor tanning may be addictive.

Click here to find out more!

Close to 30 million Americans visit indoor tanning salons each year despite the well-publicized risks of skin cancer associated with this practice. The U.S. Food and Drug Administration is now considering a ban on indoor tanning for people under age 18 and the American Academy of Pediatrics is on record that it supports this legislation.

The new findings, released online in advance of publication in an upcoming print issue of the journal Addiction Biology, suggest that indoor tanning taps into the brain's "reward center."

"We saw brain changes that are consistent with that of other things that are considered rewarding such as money, food or drugs," explained study author Dr. Bryon Adinoff, a professor of psychiatry at University of Texas Southwestern Medical Center at Dallas. "The same areas of the brain lit up, and we know that if something is rewarding to the brain, there is the potential for addiction."

The new study involved seven frequent tanners who said they had used tanning beds an average of about 27 of the previous 90 days.

The researchers had each participant use a tanning bed for 10-minute sessions under two conditions: in one session, the tanner was exposed to ultraviolet (UV) radiation, while in the other session special filters blocked such exposure. Volunteers did not know if the tanning session involved UV radiation or not.

Participants were asked before and after each session how much they felt like tanning. They also received an intravenous compound that allowed the researchers to measure brain blood flow during their tanning sessions.

The result: Indoor tanning sessions that involved UV radiation triggered activation of the brain's dorsal striatum region and the medial orbitofrontal cortex, each of which plays a role in reward and reinforcement. Sessions where UV radiation was blocked showed less of this type of brain activation, the team found.

The findings make sense to Dr. Heidi Waldorf, an associate clinical professor of dermatology at Mount Sinai Medical Center in New York City. "Like other addicts, 'tanorexics' continue to tan indoors and out despite clear warnings of the dangers," she said. "In my practice, I've seen women continue to tan after skin cancer surgery and after spending thousands of dollars on cosmetic procedures to rejuvenate their photodamaged skin."

But John Overstreet, the executive director of the Indoor Tanning Association, a Washington, D.C.-based trade group representing the indoor tanning industry, said that UV light is essential for survival.

"Some people overdo things, but that doesn't mean they are addicted," he said. "Moderation is the key, whether your UV exposure is from a tanning bed or sun."

More information

Find out more about the dangers of UV radiation at the Skin Cancer Foundation.

Copyright © 2011 HealthDay. All rights reserved.

 
 
 
 
Comments

Really!    In this case addiction is really an attraction. Further, it is UV lgiht we seek, not a tan. We want to be expsoed to UV light whether we tan or not. It seems like an oversimplification to call all UV exposure tanning!

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Doug McNabb @ Aug 15, 2011 15:13:26 PM

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