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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mark d's picture
Replies 6
Last reply 2/8/2013 - 9:28pm
Replies by: mark d, Janner, washoegal

I found out 1 Feb I have NM. I posted it a few days a go and got great advice.I had it for at least 4-5 month when they did a shave biopsy. They only got 2.7 mm off when they did the biopsy. Yesterday I saw the oncologist at BAMC. They just asked questions did a quick check on my body and scheduled a surgery appt for march 4.. Considering the fast rate of NM and no other tests were done and the only info is from a shave biopsy, isnt this quite a bit of time to wait? How fast have others had things taken care of? I am in the military and can go else where for treatment .
V ç

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bioguy's picture
Replies 1
Last reply 2/8/2013 - 5:29pm
Replies by: Janner

Finally got the call with  my biopsy results today.  As some of you suggested, it was indeed basal cell carcinoma.  This has been an amazingly frightening and revealing week for me.  It has certainly increased my awareness of melanoma and related skin cancers.  I'm a scientist by training and work with the federal government, though my specialty is infectious diseases.  Sadly, my knowledge of melanoma was very limited.  I, too, thought it was a disease of the very old or only those with extensive sun exposure.  When I talked to a friend earlier in the week about my biopsy anxiety, even she commented that, "well, even if it is melanoma, they are so good these days, they just cut it out and that's it."  I'm thankful this time that it was only BCC, but it has definitely increased my awareness and I intend to spread the word.  Due to the large number of atypical moles that I have, I made an appointment to see a dermatologist for a full body scan next week, and I will spread the word to my family and friends.  Further, since I also have some adjunct faculty appointments, I will use my classroom as a chance to educate my students on melanoma and melanoma research. 

Thank you all so much for your warm acceptance and words of wisdom and encouragement, and I'm so glad I found this forum.  I plan to learn all I can about current melanoma research and how I can help.

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JoshF's picture
Replies 8
Last reply 2/15/2013 - 7:06am

Hello Fellow Warriors!

I had a quick question on staging but first let me give you a little background for those not familiar.

Aprill 2011- Small bump in cheek removed by derm. Thought to be sebecaous cyst as skin looked fine. Comes back melanoma and suggested metatstatic melanoma. Find melanoma specialist....PET/CT....negative

May 2011- Wide excision and SLNB. Margins clear and SLNB negative. Oncologist is convinced of unknown primary...thinks it could be primary dermal melanoma....a rare subtype. No further treatment advised.

Nov 2011- Feeling uncomfortable...find another melanoma specialist. Wants more aggressive scans....3 months vs 6 months. Finds my case unique but figures I fit more into stage III or IV.

Very confused as you want to believe it was primary but what to fo. Lots of advice....very differing opinions oddly enough from friends who are doctors (university medical vs. private). Whatever I just want to whip this so I continue seeing both but opt for aggressive follow up doing scans every 3 months.

This leads me to my staging question....I have order for scan and see that for diagnosis it says Stage X, pt3a. I have no clue what this means and where I fit in to "staging guidelines". I really hate being an oddball but I have been blessed considering what others are going through or have been through. I visit often as I appreciate the wisdom and logic that is shared on this site. I know scanziety is building (scan is Feb 22nd) and I always keep waiting for shoe to drop. Try to stay positive but nerves do get best of me.

Wisihing you all the best and hoping to hear great things about new treatments on the horizon. My doctors say there are some great advances happening and new treatments aren't far off!!!

 

Josh 

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I have been in a GSK BRAF/MEK combo trial for Stage IV patients since May 2011.  So far so good!  John Patrick Michael Murphy, who also posts on this board, has been on this combo for over 2 years and recently posted that he is well.

GSK recently announced a study of this combo for Stage III patients:

http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phas...

This will be a Phase III double blind study, with patients randomized to receive either the BRAF/MEK drug combo or placebos.  It is something for completely resected Stage III patients to think about, as existing adjuvant therapy options are limited.

Best wishes,

Harry

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A new Phase II clinical trial just opened up for people who have progressed on a BRAF inhibitor. Several sites on the East coast and Tennnessee.

 

Clinical Trial Identifier: NCT01519427 

Selumetinib and Akt Inhibitor MK2206 in Treating Patients With Stage III or Stage IV Melanoma Who Failed Prior Therapy With Vemurafenib or Dabrafenib

They do NOT exclude brain mets. Unfortunately for my brother, they do require the patients to be relatively strong and healthy, which he is not. Might be good for some other people, though.

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Dgentz's picture
Replies 4
Last reply 2/11/2013 - 9:55pm

Haven't been posting much, but I have visited a lot! I finished my courses (x4) of IPI, went off Z and unfortunately, have had signifcant growth.  After much pain and additional mets, I'm starting Chemo next week. sad

Words of wisdom appreciated! 

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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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bron's picture
Replies 11
Last reply 2/9/2013 - 2:30pm
Replies by: lou2, POW, Gordon747, Gene_S, bron

 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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 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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Gene_S's picture
Replies 2
Last reply 2/8/2013 - 7:05pm
Replies by: Anonymous, H555

A new melanoma related webiner was posted yesterday see:

http://www.melanomainternational.org/news/

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

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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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Replies by: MiamiAllen

Kim asked me to post for her.  I " My doctors think I will have durable remission as no one with complete response with IL-2 plus 30 months has ever had a recurrence".    Hooray for you Kim.  Send those positive thoughts our way. 

Love and Light

Carole K

PS  NEVER EVER GIVE UP HOPE.  There are many of us who have been through some very difficult times and have moved forward.  Let us all help you.  Hang in there.

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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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Replies by: LuckyMan51, Anonymous, book, paradise, jag, POW, Carole K

I finished up 4 Yervoy infusions in April 2012 following radio-static surgery to zap a brain met in March Saw steady shrinkage and was declared NED by Dr on 8/14. Next two brain and body scans were clear. Saw neurosurgeon yesterday for brain scan and consult. The fried tumor spot had a strange look. Looked like the dried up tumor grain was still there, not necessarily larger but had a dime sized circle of liquid around the spot. I had heard that people sometimes see shrinkage followed by some slight growth before seeing shrinkage again. Anybody have any thoughts or experience on this. Dr has me going back for a brain scan in 6 weeks rather than going in via traditional brain surgery now. Needless to say I am rather concerned. It seems odd that this change is 9 mos after completing the Yervoy treatment. Most of the posts I have read regarding Yervoy tumor growth were more immediate. No headaches or other problems have resulted thus far. Thank you in advance for any comments...

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markdz's picture
Replies 11
Last reply 3/15/2013 - 2:58am

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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