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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Carole K's picture
Replies 3
Last reply 2/19/2013 - 6:47pm

HI Everyone,

Just wanted to let you know I am sending out an  e-mail to those I have met in chat and others I have known from Chat for many years.  John F, Kyle, Doro, Colleen, Janet, and so many more whose names have escaped me I hope to see you again tonight.  Your stories and your attitudes are amazing,  I just want all of you to find the caring and support I did for many many years.  Let's all try to bring Chat back to what it once was.

I have so many questions for those of you who are on treatment.  There are quite a few new treatments I was not aware of. 

Hope to see you there,

Love and Light

Carole K

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The MRF is looking for two patients with stage IIIB-IV cutaneous melanoma who are willing to review and provide feedback on portions of a protocol as presented at an ad board for Novartis Pharmaceuticals in East Hanover, NJ.  We woiuld also appreciate patients in lower stages as well.  The upcoming advisory board will be held on February 25th.  The meeting start time is 11:00 am and will end at approximately 3:30 pm.  Participants are welcome to come to town the night before and stay at the host hotel which is the Hilton Parsippany.  All travel expenses will be reimbursed.  Please contact Torrey Shallcross at tshallcross@melanoma.orgif you are interested in participating.

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ChrisB's picture
Replies 6
Last reply 2/20/2013 - 2:12pm

 

Ten years ago today I had a CT scan that showed a lesion to my lung advancing me to Stage IV.  My status for the majority of these past ten years has been stable/manageable disease.

While my journey has certainly had its moments of successes and disappointments I have been fortunate in that I am still able to live a somewhat normal life and continue to work full time.  I know that this might not be the average life of a stage IV patient but I’m hoping this post gives at least a glimmer of hopefulness to others.

My heart goes out to all of you, patients and caregivers alike.

Chris

 

Stage IV February 19th, 2003

Manageable Disease since October 1st, 2004

ChrisB~StageIV on MPIP

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dian in spokane's picture
Replies 12
Last reply 3/2/2013 - 9:55pm

Okay, I'm still awaiting my call from the Specialist for my second opinion visit, and have talked to everyone I can about IL 2. Mostly, the people I have spoken to who have had success with IL 2 have told me that they WOULD do it again. Even some of those who did IL 2 and then had to go on to other therapies.

So..what I'd like is to hear from everyone here who has done IL 2, when you did it, if you did it alone or with TIL. If you'd do it again.

 

thanks,

 

dian

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Mandi0280's picture
Replies 7
Last reply 2/20/2013 - 3:23pm
Replies by: Gene_S, Mandi0280, Anonymous, washoegal

Hello,

 

 Wanting to know what everyone here knows about scan intervals. Since my husband was diagnosed with melanoma in October 2011 I have done a fair amount of research and thought that I knew when scans would be due. Long story kinda short...after diagnosis he done ipi until he couldn't take it anymore. One month of interferon and scans every 3 months. He was 1 year NED as of October 2012. We just had a followup with his oncologist who said we will see you back in August  and did not schedule any scans. This was very shocking to me. I do know in October he told us it was getting harder and harder for him to get scans done for people due to insurance reasons but i'm still a little worried about this. Has anyone else waited this long in between scans after just 1 year NED? This will put my husband at 10 months in between scans

 

Thanks

Mandi

Mandi

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Newmom's picture
Replies 2
Last reply 2/19/2013 - 11:31am
Replies by: Newmom, Becky

Is it normal to have moles on the gum?  I realized that a mole appeared on the gum of my 6 year old daughter.  It is small but I read it is better to have it removed giving its location.  I am taking her to have it checked this Friday but just want to see if anyone here has any thoughts or experience with this.  Thanks.

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Calynda's picture
Replies 13
Last reply 7/13/2013 - 3:39am

I recently saw a dermatologist about a spot on my skin that I've had forever.  I had a previous doctor tell me that it wasn't anything to worry about unless it started changing.  Last year I stopped taking birth control and got pregnant fairly quickly.  Sometime in that time frame, the spot in question started to change.  It was going to be a priority, but then my baby stopped growing and I had to take care of the miscarriage since my body did not recognize a problem.  Shortly after that, I was pregnant again.  We found everything to be good with the baby at the end of November/beginning of December.  I was a month away from changing insurance, so I figured it would be easier to wait and see the new doctor than to try to find one under my previous insurance just to change anyway.

 

So basically the spot has been changing for a little less than a year at the time it was biopsied.  The determination was Melanoma.  I'm currently 25 weeks 3 days pregnant.  I was informed of the Melanoma a week ago.  Today, in addition to my 3 hour glucose tolerance test for the pregnancy, I had a consult with an oncologist as well as with the general surgery department.  I should be scheduled for a WLE and a SLNB (without the blue dye since I'm pregnant) within about 2 weeks.  Once that's done, we should know more about how bad, or not bad this is.

 

I'm terrified that it will be bad.  Right now it's classifed as stage IIc.  The oncologist has informed me that I will probably have 1 year of treatment after the baby is born.  The baby is currently due May 31st, but I have a consult with Perinatal on Wednesday.  I have had no complications with the pregnancy so far, but they want me to meet with Perinatal incase they have to have me deliver the baby early so that I can start treatment.  The oncologist is worried about post partum emotions mixed with the cancer treatment (I'm pretty sure it was interferon she had mentioned).  She's also mentioned that there is a clinical study she'd like to try to get me into.  She had mentioned this particular study was one that would add to the other treatment.

 

I'm working very hard to not let this adversly effect my day to day life.  Right now my husband and I don't know anything other than the spot was a thick melanoma.  I can't wait to get some more answers so we know how to plan for this.  My husband is really scared about the prospect of having to care for a newborn and a sick wife.  The waiting is just really hard.

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Gene_S's picture
Replies 7
Last reply 2/19/2013 - 6:25pm
Replies by: Anonymous, LynnLuc, Gene_S

Richard Weller: Could the sun be good for your heart?

Our bodies get Vitamin D from the sun, but as dermatologist Richard Weller suggests, sunlight may confer another surprising benefit too. New research by his team shows that nitric oxide, a chemical transmitter stored in huge reserves in the skin, can be released by UV light, to great benefit for blood pressure and the cardiovascular system. What does it mean? Well, it might begin to explain why Scots get sick more than Australians ...

more info at:   http://www.ted.com/talks/richard_weller_could_the_sun_be_good_for_your_heart.html

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Mickey n Jo's picture
Replies 3
Last reply 2/21/2013 - 10:24pm

My husbands Pet/Ct results from Thursday, Feb. 14 were not what we were hoping for.  The majority of hypermetabolic soft tissue nodules and lymph nodes have increased slightly in size, but the intensity of the hypermetabolic activity has not changed.  Also multiple small enhancing lesions in the brain have been detected which are highly suspicious for brain mets. He is having a brain MRI on Friday, Feb. 22.  His melanoma specialist recommends staying on Zel, 3 and 3, until we get the results of the MRI. She feels that Zel is still keeping mets in his body in check for now.  Depending on the results of the MRI, the next step will probably be radiation. I'm not sure if that means WBR or Gamma Knife. I thought that Gamma Knife wouldn't be an option for multiple lesions. Is that correct or not? Forgive me, but I'm a little confused and upset right now. Trying to keep a PMA, but sometimes it's really hard. Any info you could give us would be greatly appreciated. We value your input a lot.

                                Thanks,

                                    Jo

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buckytom's picture
Replies 5
Last reply 2/19/2013 - 2:28pm
Replies by: Anonymous, jeffjohn78, audgator, alabama girl

After having a neck dissection my doctors (including specialist from Mayo) believe that I should go thorugh radiation - 5 treatments over the course of 2 1/2 weeks. I know the docs have to give you the list of all of the side effects - has anyone here went through this radiation therapy - and if so what were your side effects? Any suggestions on how to eleviate them?

Thanks!

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

Login or register to post replies.

Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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Lauri England's picture
Replies 7
Last reply 2/20/2013 - 10:36am

I was looking for any people out here that has had Melanoma in there rib cage.  I had a Pet Scan and left rib cage 3rd rib down lit up on the scan.  Originally the doctors thought it was from a previous injury, but that was ruled out with a rib cage xray and nothing showed up.  I am scheduled to have a bone biopsy this Friday.  What I was wondering is if anyone has had this and absolutly no pain.  I have no pain or symptons.  What other possibilities could it be if not melanoma?  Everything I have read out here people seem to experience pain associated with bone melanoma.  Has anyone ever had this with NO PAIN???? Thank you so much for comments and other subjestions..

Don't sweat the small stuff. There are bigger fish to fry!

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