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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nj-Mark's picture
Replies 13
Last reply 9/22/2010 - 11:33pm

Hi All,

First time posting on the "new" MPIP board; very fancy!

So, i'm out on disability now and am pondering my next steps after washing out of the PLX-4032 trial in early August.   (I took August off to spend time with my kids.)  I now have a number of large (3x5 inch) tumors encasing arteries and muscles in my back and groin, and numerous involved lymph nodes elsewhere.

My doctors have suggested I try single agent DTIC or Temador, or polychemotherapy such as CVD (dacarbazine, cisplatinum and vindesine) as an approach.   As I read about these in the literature and on MPIP it is really hard to find success stories of durable response to these treatments.    I was a great responder to PLX (70% tumor reduction) but in the end they all came back and then some.

I would very much appreciate hearing from anyone who has (or has cared for someone who has) undergone these treatments.   Worthwhile?  Gateway to other treatments that helped?

Best of luck to everyone,
-Mark

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Lori C's picture
Replies 3
Last reply 9/16/2010 - 7:20pm
Replies by: Charlie S, emilypen, Sherron

Because Will has been having  nausea and some vomiting, his oncologist wants a brain scan.  So far, he has no other symptons.  The vomiting is accompanied by a fair bit of nausea, and is usually later in the day. 

Naturally, I'm terrified : ( 

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bcl's picture
Replies 9
Last reply 9/17/2010 - 1:23pm

Hello MPIPers, a few of us in Victoria Canada are doing everything we can to pass a tanning bylaw that would ban under 18 year olds. We are at the public hearing stage and Steve Gilroy is telling us we need only parental consent and a ban of skin type ones. I have issues with this, one of which being I took the online skin test; answered the questions as my younger self and was informed  I could tan sensibly.  I'm sure most teens, fair or not,  would be inclined to get the same response.

I also think not only fair skinned folks get melanoma but am unsure of my facts.

So if anyone feels they can help me I would really appreciate hearing from you!

 

 

(And for anyone who wants to make a submission to the hearings before sept 30 here is the link  http://www.crd.bc.ca/_contact/?r=768 

 

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Replies by: Janner

I was dianosed with melanoma on August 23 and had surgery to remove the surrounding tissue the next day.  The test came back clear on this mole.  It seems strange to me that treatment can stop here.  How do I know that there are not other moles that are melanoma?  Should I be pushing for other tests or does this seem normal to just remove the tissue and be done.  No blood test, nothing?  I am happy that they are saying my treatment is done but concerned after reading all the post on this site where there were other spots undetected.  Or that it had spead to other areas.

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Replies by: Anonymous, Janner, washoegal, Brandi, dcarter

I was dianosed with melanoma on August 23 and had surgery to remove the surrounding tissue the next day.  The test came back clear on this mole.  It seems strange to me that treatment can stop here.  How do I know that there are not other moles that are melanoma?  Should I be pushing for other tests or does this seem normal to just remove the tissue and be done.  No blood test, nothing?  I am happy that they are saying my treatment is done but concerned after reading all the post on this site where there were other spots undetected.  Or that it had spead to other areas.

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makedoandmend's picture
Replies 5
Last reply 9/16/2010 - 9:15pm

Does anyone have any experience about LIJ they can share with me? The oncologist/melanoma specialist I am working with is from LIJ and thats where I am having surgery as well. I tried Sloan Kettering  but they wouldn't take my insurance. I searched the forum and found one really positive post but just wanted to see if anyone else has had recent experience with them. thanks!

-pat LI

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Hi Everyone

 

I am a stage 3c with no brain or organ involvement. Have 2 small tumors in thigh 4mm & 6mm. Primary in foor 2005, have had 4 recurrence in thigh and 2 remain. My doctor tells me I have slow growing,non-agreesive melanoma. Because my tumors are so small, I do not qualigy for trials requiring 1 CM size tumors.

My doctor is suggesting low dose (75 mg) temaodar for 42 days on & 2 weeks off.

Has anyone taken temodar, with my similar situation, for an extended periond & what were the results of the treatment>>>did it make you NED, or shrink tumors or progress???

Thank you somuch for replying to my post.

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lhaley's picture
Replies 7
Last reply 9/21/2010 - 12:51pm

A few weeks ago I had a fine needle biopsy on my arm - melanoma. Went and spoke to Dr. White in Charlotte. Another PET before surgery and sure enough 2 more spots lit up.  One was the thyroid which was diagnosed 4 years ago as Hashimoto's disease but it had doubled in size in the last few months. The other was a node behind the collar bone that had shown up on previous scans but was determined to be not showing change. This time it was showing change.  

Thyroid remains fine but the node is mel.  Waiting to hear what the tumor board has to say.  So now I'm a little over 4 years at stage IV. Almost made 1 year NED. Will take the night off and show my emotions and tomorrow will put back my positive attitude and find out what's next. 

I have to give credit to the radiologist in Charlotte. It took him 70 min to painstakingly work around the collarbone and veins that were in the way but he perservered and was able to get a large enough sample. 

Linda

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ValinMtl's picture
Replies 6
Last reply 9/17/2010 - 1:28pm

Long day at the Royal Vic in Montreal.  Out of the house at 5:30 - we're out in the country, blood work at 8 am, meeting with doctor and then the BIG WAIT!  Booked for 11 am but drug was ready only at noon, then unfortunately no beds available in the motel (5-bed room rather than the room with chairs) until 2:30 pm, 1 1/2 treatment then 1 hour...Finally left at 5:30 pm....but who's complaining.  I have had my first round of ipi.....YAHOO!  It went very well no side effects there.  Had a headache this morning, but very strange..my leg with the 100 plus little monsters had a very tingly feeling all night.  I like to think it's ipi doing it's work!!! 

Met up with Sharyn and we had hoped to have coffee together with our hubbies Jim and Bill.  Alas, the hospital kept us both busy running around so we never got the chance, only touched base briefly.  Sharyn starts her treatment next Thursday - we're finally where we want to be!!   Val

Live Laugh Love Nothing is worth more than this day!

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Sherron's picture
Replies 7
Last reply 9/17/2010 - 12:02pm

Hi everyone,

Jim is having lots of stomach problems, and of course, as of yet, has not agreed to go to the doctor.  He is in pain, having bowel issues, and mainly very uncomfortable.  He is not eating much.  He looks pale.  He, of course, tells me he must have some kind of virus.  I don't think so.  He now a lymph node swollen on the left side in front of his ear.  Another  3 lumps on the left side of his back.  1 on his left side.   And the right side, originial Mel, that lymph node is huge.  He has one on the right side of back...and lump in right side of chest.  None of these are giving him any problems. HELP, PLEASE.

Does anyone have any experience with this?  Thanking you in advance for any responses to this. 

Take Care,

Sherron, wife to Jim

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MaryD's picture
Replies 31
Last reply 9/25/2010 - 3:03pm

I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence.  Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.

When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here.  But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2,  here I am feeling very humbled and blessed.

Over the years, this board has been a lifeline to share  the best and worst case scenarios of this devastating disease,  laughter and tears, and most of all . . amazing .friendships.  This is a difficult journey to be sure, but I can attest to the fact there is hope out there and the prospect of living with the beast as a manageable disease.

And now .. .it's time for a happy dance!!  :)  :)

Mary

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amybusby's picture
Replies 20
Last reply 9/18/2010 - 7:29pm

A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

It's been a long time since I last had the GSK BRAF inhibitor (end of May), so we've been expecting at some point  that the effects would wear off.  I've had some growth in the subq system, and the lymph nodes, but the main problem is the growth of bone mets.  I think all were there previously but now are growing & compromising the bones more.  I have a pretty substantial right femer met that's come on strong recently in terms of pain, so I knew something was wrong there.  It's going to need immediate attention.  So the plan is to try for the next few days to get my hands on some BRAF inhib. drug somehow.  I am open to all suggestions, companies, trials, compassionate use plans, inside information, etc.

Assuming we can't do that (a fairly likely assumption) Dr. Papa recommends radiation for the femer & a couple of spinal mets.  The spinal ones aren't hurting yet but as long as we're there....  (radiation would go along again with another round of radiation).

I'm going on Thursday for an infusion of Zometa - anyone done that?  Anything I should watch out for?  (to try to build bone density)

So it's discouraging of course.  It torments Dennis to know there is something out there is practically assured of controlling my systemic disease now that we have the CNS disease stable.  My quick and almost complete response should make me a terrific candidate for other cohorts of the BRAF trials that allow CNS disease, or for compassionate use - you'd think.  But then again we all know rational, reasonable thought processes have zero to do with FDA procedures and / or drug manufacturer business decisions.

So right now I am focusing on staying off my leg and making sure there are no bone breaks im future.  We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun.  But I have agreed to do my best. 

Love,

Amy

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sofiaeli's picture
Replies 3
Last reply 2/24/2014 - 6:37pm

Hi everyone.

My husband is currently fighting stage IV melanoma and is about to enter the TIL study at NIH.  Anyone have any experience with it? 

Thanks!

Melissa

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Nicky's picture
Replies 5
Last reply 9/14/2010 - 10:56pm
Replies by: washoegal, Pekoe, Fen, Nicky

Hi everyone

I've just been on State Television in Australia.  I was diagnosed with Stage III melanoma 10 years ago and I am currently NED.  I was treated with radiation therapy, my patnet is under "nicky".  I'm not financially well off but this being my 10 year NED anniversay, and having just moved to Brisbane, Australia, I decided to scrape up all the coins I could find and donated $100 to the Princess Alexander Hospital  Research Foundation in Brisbane who are doing ground breaking work in Cancer research for melanoma and other cancers including the vaccination program by Dr Fraser with the Giardisal vaccine for cervical cancer.

Anyway, if you donated $5.00 you would get a plastic duck with a number on it and it would be raced down the Brisbane River.  The first prize was a toyota yaris and out of 21,000 ducks worth of donations from people, my duck came first, and I am so excited, it is unbelievable.

So here is the interview and also a little bit more of a press release to any one contributed below it.

www.youtube.com/watch?v=GagCONDT4us  

 

"When going Quackers really saves lives

Thank you so much for supporting the PA Research Foundation for the Great Brisbane Duck Race.  The sale of over 21,000 ducks has raised in excess of $100,000 for cancer research which will literally helps save lives.  This is a record achievement for the event and you have helped our goal become a reality.  Thank you.
The Winners are:
1st Place: 19544 Nicola from Windsor, QLD
2nd Place:13842 Raymond from Richlands, QLD
The winner of the Great Brisbane Duck Race Nicola from Windsor said “I owe my life to the PA, the least I could do when I heard about the event was to buy a Flotilla of ducks to show my support, I never thought I would win”.
Nicola was almost in tears when we called her to tell her the good news and she said the timing could not have been any better as her old car was about to pack it in.
Nicola owes her life to a PA funded research project headed up at the PA Hospital by Professor Bryan Burmeister. She has been part of the special 17 year international project which is the first of its kind to prove the effectiveness of radiation therapy in curing melanoma.  It is now benefiting patients across the globe including Nicola.
“I am a lucky duck in more ways than one, thank you so much to the PA and the invaluable research that they have helped make possible.” She said
The funds raised from Great Brisbane Duck Race will go to support cancer research in the areas of prostate cancer, skin cancer, leukaemia and breast cancer research.
There are more projects that need our funding than we can support so money raised like this is just wonderful.  Thank you so much.
All the live action and photos of the event will be up on the website later this week.
Many thanks from Quackers and the PA Research Foundation Team. 

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