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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Last friday i found out that i have nodular mel.. Doing what most normal people do, i went to the internet. I am at my wits end. I am 41 military in good shape. This is not supposed to happen to me. I had a growth on my earlobe that i didnt bother with until i found a mole that i didnt like. The mole was benign but the growth turned out to be NM. Tomorrow i go to Brooks Army Hospitol to do tests. The information i have about my growth is what my derm.gave me. They shaved 2.7mm off but didnt get the root for right now and this growth was on my ear for about 4 months. scared to death. I have no one to talk to about this. My wife is at her nevres ends also. I know that this is fast moving and dont want to die...

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sjl's picture
Replies 2
Last reply 2/7/2013 - 8:01pm
Replies by: Josh, jcmp

My husband had his first round of Yervoy nine days ago.  Honestly, one of the lumps on his neck began to change 2 - 3 days later and appeared to have gotten smaller.  I thought he was having an amazing response since I understand that this treatment takes awhile to work.  Since then, it enlarges a bit, then shrinks a bit from day to day.  What are your thoughts on this?  I guess I'm grasping at straws looking for some hope.  This board has been such a help to me.

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bigb0624's picture
Replies 3
Last reply 2/7/2013 - 7:47pm
Replies by: Dgentz, POW, Tim--MRF

After being on Z for almost 6 months and my tumors still shrinking, i began my IPPI yesterday.  Even though the Z is still working my doctor felt this was a good time time to start the IPPI.  Why wait until my body starts to reject the Z start the IPPI?  My body is strong enough to fight the tumors withZ now so let's start the IPPI now.  My doctor said i shouldn't experience much in the way of side effects after the first dose of IPPI.

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Carole K's picture
Replies 6
Last reply 2/7/2013 - 4:50pm

HI Everyone,

A group of us OLD TIMERS from the Board will be in chat next Tues. WEd. and Thurs . starting at 7:30 until........ who knows.  At one time we would stay there to the wee hours of the night.  All of us found incredible support there and are hoping that perhaps some of you will start to use chat. It is a wonderful place for support.  I will tell you this... you never know what will happen. Often times the topic veers off  Melanoma and before you know it we sometimes poke fun at each other and ourselves.  It was always a great place to go when we were feeling doen.  There will be many Stage IV survivors so joing us with your questions.  Hang tough everyone.

See You Next Week

Love and Light

Carole K

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 Hi again from Australia. Our government is asking again for information to help them decide on drug costs reimbursment to patients. And again i would like anyone who has any knowledge of the drug and treatment to click on the link and add their thoughts. the link is only open until 13.02.13.

No changes here for my daughter... still cannot get any doctor or specialist to see her...We get the same response everywhere...(she has a specialist so we cannot see her. The problem is she does not have any private insurance so is at the bottom of the list).

Her specialist (allocated by the hospital) is a surgeon and while he is excellent at his job , his attitude is , "if you find a tumor , i will cut it out"". I am still searching for a specialist that will help her monitor her body , the surgeon does not do this. Her local GP is doing a very good job of monioring her general health at the moment and we are relying on this at the moment...the search goes on...

 PS, she can book into a dermatoligist however in Australia the waiting list is over 1 and half years... She is on lists..

again...if you get melanoma...dont get it in austalia..... 

very kind regards from Bron  (Australia).

 

 

 

PBAC Invites Consumer Comment on Zelboraf Reimbursement

Zelboraf (vemurafenib) (commonly known amongst melanoma patients as BRAF therapy) was first considered by the Pharmaceutical Benefits Advisory Committee (PBAC) in July 2012, where a decision on recommending the medicine for PBS listing was deferred to allow the PBAC to obtain further information. The PBAC will again consider Zelboraf in March 2013.

The PBAC welcomes members of the general public to make comment on the application for a specific medicine being considered for PBS listing. The PBAC accepts these submissions, called Consumer Comments, from patients, carers, members of the public, healthcare professionals or members of consumer interest groups.

Consumer Comments in relation to Zelboraf, or any other medicine being considered by the PBAC in March 2013, close on 13 February 2013. Information on making a Consumer Comment is available at: http://tinyurl.com/b48nexn

If you would like to make a comment the PBAC provides some questions to guide your comments (please see below). You do not have to answer all the questions. Information should be included that would help the PBAC understand how this health problem or disease affects Australians, and their families and carers.

1. What treatment (if any) are you using now?

Please describe what medicines you take to treat your health problem and how well this treatment works.

2. What do you see as the benefits of this new medicine for you?

Please describe the benefits you think the new medicine could have for your health? Do you think the new medicine could have any disadvantages?

3. How will your life and that of your family and carers be improved by this new medicine?

Please describe how you think this medicine will affect your life and the lives of your family or carers. Please explain why you think this.

4. What other benefits can you see from having this medicine on the PBS?

Please describe any other benefits you think will come from having this medicine listed on the PBS (for example: fewer hospital visits, reduced time off work and so on).

5. Do you have any comments on the consumer input process?

Please provide comments or suggestions on how this process could be improved (are the questions appropriate?, what worked well?, what needs improvement?).

Consumer Comments can be submitted in the following ways:

Online: http://tinyurl.com/a569arg

Email: commentsPBAC@health.gov.au

Mail: PBAC Secretariat

MDP 952, Department of Health and Ageing

GPO Box 9848

Canberra, ACT, 2601

Fax: 02-6289 4175

 

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MarieM just posted this link on the Off-Topic forum, but I believe it deserves to be posted here, too: 

http://www.youtube.com/embed/BaQdwTsVtCY?feature=player_embedded"

Cancer (Hodgkins lymphoma) warrior Megan Kowalewski produced and stars in this great thumb-in-the-eye to cancer. Actually, she has created a number of Youtube videos to document her journey. If you want your spirits lifted and your optimism revved up, check them out. You can read more about Megan at: http://readingeagle.com/article.aspx?id=442205

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MarNYC's picture
Replies 6
Last reply 2/7/2013 - 10:21am

Hi Everyone,

I am looking for a description of sub-qs (hard/soft, pigmented or not etc.). I have looked extensively on the internet for a description and it seems that every time someone asks what a sub-q looks/feels like they never get an answer. I know that these things often present differently in people so if there isn't one description maybe people can tell me what they have know sub-qs to be like. It is hard to know what to look for when there is no description other than lump, which is super vague. Thanks so much for your help!

MarNYC

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POW's picture
Replies 5
Last reply 2/7/2013 - 9:30am
Replies by: POW, Tina D, NYKaren, washoegal, Anonymous

 

The people on this forum are pretty open about most emotions. We talk about our fear, anxiety, frustration, elation, and stress. But I never hear anybody talk about depression. I, personally, didn't talk about it because with so much to do and so much to think about, I wasn't depressed. Or so I thought!

I just posted about depression on the Off-Topic forum. I suspect that we all-- patients and caregivers-- would be wise to recognize and deal with that emotion. It's effects can be very corrosive.

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Anonymous's picture
Replies 4
Last reply 2/7/2013 - 2:21am

Just finished more scans.  No one is ever going to use the "C" word, but I am pretty much there.  It is a nice problem when the docs don't know what kind of follow up scans to do since I have become so boring.  Other than tearing my other ACL which ironically started my mel journey 11 years ago, I am doing well.  Emma is almost 5 and Jade almost 8.  I can't believe it has been 2.5 years since undergoing IL-2.

My onc tells me Queen's here on Oahu is about to become a melanoma center as well.  Dr. Charles Balch himself will be meeting with the Queen's cancer center this week.  They will be starting MEK/Braf combo trials that have regular biopsies of monitored masses over time to see how the genetics change over treatment.  It is the next step in trying to determine how quickly tumors develop resistance and how they can in the future pulse therapy to delay escape pathways.  How cool is that?!

I am now full-time permanent with the HI Dept. of Agriculture as a veterinary medical officer after almost 6 years.  I love my job and work with wonderful people.  I am also in the process of becoming a full-fledged sheep farmer.  Unfortunately my 14 month Anatollian Shepard x Akbash developed a mass around her windpipe.  I biopsied it this weekend and am awaiting results.  I know it is cancer, just what kind, and can I put her into a long term remission......

You know you are a survivor of Stage IV when you once again begin to worry about retirement, putting the kids through school, gaining weight etc.  The time in limbo though was pure hell.  Anyone about to undergo IL-2 I am happy to talk with.  with all the new therapies it seems IL-2 is being forgotten or worse not recommended because of its toxicity.  It still is one of the very few therapies to date that can promise a small subset of patients a durable and permanent remission.  I am one of those patients.  I am happy to say I will probably die from old age, or something stupid.  I am not planning on showing up as a story on 100 ways to die, so I think old age and bad genes for heart Dz will eventually take me.

Please don't discount IL-2.  It is brutal but has a quick recovery.  Who knows, it may even enhance some of these other immune modulators even if not a complete responder.

I know on my CT scan, my thymus is still activated thanks to IL-2.  Way to go natural killer cells!!!!!!!

Take care all.

I hope to be able to post as Kim K, but this stupid site won't let me log in as Kim K saying it is already taken :(..... I am not about to reset all my patnet etc. and wish I knew how to reset my password and e-mail without having to give up Kim K.  If anyone knows how, please let me know.

kimkdvm719@gmail.com

Aloha all.

PROUD TO BE AN OFFICIAL OLD TIMER!!!!!

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jmmm's picture
Replies 11
Last reply 2/7/2013 - 2:03am
Replies by: JerryfromFauq, Anonymous, jmmm, Janner, Gene_S, washoegal

We are hoping some of the "researchers" on here can help us. My husband had a skin melanoma removed in 1997. He was in the military for 10+ years, spending 14 months in Iraq. With the exception of this time in Iraq, he has spent the majority of his time indoors ( he is an engineer). In 2011, he progressed to stage 4, multiple surgeries, Yervoy, and Zelboraf and right now, he is NED:). We are trying to find some sort of research article stating that the extreme sun exposure he had in Iraq could have contributed to his melanoma spreading. His melanoma specialist has already written a letter stating this fact, but we need some sort of research showing the same. We would be so appreciative of any help that can be offered.

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MarcusW's picture
Replies 3
Last reply 2/7/2013 - 1:49am

First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

My father's melanoma began on his penis, which, I understand, is very unusual. After partial amputation, the melanoma spread via the lymph nodes in his groin to his stomach. He experiences a great deal of pain and eating makes it a lot worse.

He received six doses of Decarbazine, which helped enormously. He was scanned twice, each time after three doses, and, on each occasion, the tumours had either shrunk or stabilised. About six weeks after the last dose of Decarbazine, my father started to get quite ill again - he started to lose weight rapidly again and the abdominal pain returned with a vengeance. It was the oncologist’s opinion that, if the melanoma had begun to grow again so soon after the last dose of Decarbazine, more Decarbazine was not the way forward. He was therefore offered Ipi. Almost three weeks after the first infusion, a large patch of vitiligo has appeared on his arm and he has constant abdominal pain, especially in his right side. I am aware that this could be his kidney, and blood tests revealed that his kidney function was not optimal. However, given that they went ahead and gave him his second infusion yesterday, I am assuming that they considered it safe to do so.

My father is now telling me that a lump has appeared in his stomach. Am I being hopeful, or could this all be evidence that he is responding to Ipi already? I have read many times on this site that depigmentation and inflammation of the tumours are all positive signs. I would appreciate your thoughts.

Thank you,

Marcus

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Lauri England's picture
Replies 6
Last reply 2/7/2013 - 12:53am
Replies by: JerryfromFauq, NYKaren, Anonymous, POW, Wolverine

Per my previous notes on here.  The CT scan lit up over my 3rd rib down on my left side and doctor had me go for chest xray to see if I had any type of injury to that rib.  Nothing showed up on the xray and he would not give me any thoughts as to what else it could be and wants to do a biopsy.  Does anyone know if I would have some sort of pain if it were the melanoma in my rib?  I have no pain at all.  It is the rib right over my heart so a heart specialist will have to do the bone biopsy and they cant do a needle biopsy because of main arteries right there I was told.  I am very scarred because I dont know what else it could be but the melanoma spreading.  I was diagnosed 3a almost 2 1/2 years ago with the primary on my right shoulder.  It had spread to my lymphnodes under that arm and had 28 removed and then went thru almost 11 months of Interferon treatments.  I had my 1 year anniversary September 2012 of being off of those awful shots.  I did go 9 months without scans because of insurance issues so this is the first scan in quite some time.  My scan from last April was clear.  Nothing showed up at all.  Any ideas would be greatly appreciated....

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

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doro's picture
Replies 8
Last reply 2/6/2013 - 11:15pm

Hi everyone,

I am posting after a couple months of lurking to say hello and ask for any info/advice people have about a potential course of treatment for my father. Apologies in advance for a lengthy post, I just want to give a clear explanation of the situation.

My father has been diagnosed as Stage III or maybe IV with a primary site on top of his head and a few positive nodes on one side of his neck and one positive node on the other side. We have met with several oncologists (we live in the San Francisco Bay Area so are lucky to have multiple options nearby) over the last several weeks and have gotten different opinions.  

Our current question has to do with BRAF medication (Dad has the mutation). One oncologist indicated he might make the case that Dad’s cancer is Stage IV, given that he had infected nodes on both sides of his neck (which he felt could be argued as more than regional spread). If Dad is Stage IV, he can access Zelboraf without having to go into a trial. However, from reading online it seems like people try to wait to do BRAF treatment until it is absolutely necessary. The oncologist seems to think that Zelboraf may be able to more successfully fight microscopic cancer (similar to radiation?), but it does not appear any studies have been completed to make this claim. The lesser side effects of Zelboraf compared to interferon are obviously attractive; while my father is a healthy, active man in his late sixties, the point has been made that interferon can be quite difficult to sustain for older adults. So the question is: any information or advice on taking Zelboraf at this point?

Really, any thoughts about the situation would be appreciated. As you all know too well, entering the melanoma world is a shock. It’s been encouraging for my family to have found this board and seen valuable information and support provided by its members. We are wishing all of you the best!

Thanks much.

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Marcia1's picture
Replies 10
Last reply 2/6/2013 - 11:06pm
Replies by: NYKaren, Marcia1, Swanee, POW, kylez

My Mother, who is 86, had her 1st dose of Yervoy on January 21.  She has State IV Melanoma - started at vulva and is now in her lung.  Last week she started having uncontrollable diaarhea.  She did dehydrate and is now in the hospital.  She was given steroids yesterday, but still has diaarhea and they even checked for C Diff, which was negative.  Has anyone else had this problem and if so, how was it treated?  She is to have her 2nd dose next week, but I'm thinking it will be delayed.  She definitely wants to continue.   Thank you for any information.

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MarcusW's picture
Replies 2
Last reply 2/6/2013 - 10:57pm
Replies by: 5374brian, Marcia1

First of all, may I thank the users of this forum for the rich source of information and support they have provided to me for the best part of a year now. After finding out my father had inoperable stage 4 melanoma last year, I have been a regular visitor to this website and find the strength, determination and bravery of the contributors both humbling and inspiring.

My father's melanoma began on his penis, which, I understand, is very unusual. After partial amputation, the melanoma spread via the lymph nodes in his groin to his stomach. He experiences a great deal of pain and eating makes it a lot worse.

He received six doses of Decarbazine, which helped enormously. He was scanned twice, each time after three doses, and, on each occasion, the tumours had either shrunk or stabilised. About six weeks after the last dose of Decarbazine, my father started to get quite ill again - he started to lose weight rapidly again and the abdominal pain returned with a vengeance. It was the oncologist’s opinion that, if the melanoma had begun to grow again so soon after the last dose of Decarbazine, more Decarbazine was not the way forward. He was therefore offered Ipi. Almost three weeks after the first infusion, a large patch of vitiligo has appeared on his arm and he has constant abdominal pain, especially in his right side. I am aware that this could be his kidney, and blood tests revealed that his kidney function was not optimal. However, given that they went ahead and gave him his second infusion yesterday, I am assuming that they considered it safe to do so.

My father is now telling me that a lump has appeared in his stomach. Am I being hopeful, or could this all be evidence that he is responding to Ipi already? I have read many times on this site that depigmentation and inflammation of the tumours are all positive signs. I would appreciate your thoughts.

Thank you,

Marcus

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