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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mwatts's picture
Replies 3
Last reply 9/17/2010 - 9:57am
Replies by: dian in spokane, mwatts

Hi! I recently had a .3 melenoma removed with margins coming back clear after second time. I was given no further treatment after and just told to go back every 3 months. I am still scared to death it has spread. I have a long history of abnormal moles and still very young. Did anyone else get a PET scan with stage 1 or 2 or even a mole my size? Is this something I should push for? Any opinions would be appreciated =)

Faith is being sure of what we hope for and certain of what we do not see.

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Jim in Denver's picture
Replies 4
Last reply 9/17/2010 - 9:02am
Replies by: Sharyn, ValinMtl, King, molly

Hi All,

Had scans at MDA on Monday this week @ 6 weeks into the Trial.  6 lung mets showed aggregate growth of 13% - well within the 25% growth allowed to stay on the Trial.  Dr. Hwu said that it is common to see some inflammation in response to Ipi, and it is impossible to differentiate between progression and inflammation.  No new mets - also required to stay on this Trial - so the scans we good for me.  Had 3rd Ipi infusion on Tuesday.  Flew in to Houston Monday and back home Tuesday.  I feel very good and am able to do everything I was able to do before starting the Trial, so no complaints.

The Study Nurse went though her list of side effects again.  Seems like diarrhea has been the most common issue in this trial (from Ipi).  Dr. Hwu told me up front that Temodar often produces constipation, so that it tends to counteract the diarrhea from Ipi, and it certainly has for me.  I am actually mildly constipated from the Temodar while I am taking it (4 days, 400 mg each day), but nothing uncomfortable.  My other side effects have been itching (face, neck, and chest), occasional rash (from sun exposure and/or sunscreen), and occasional mild headaches (mainly from Temodar).  I have also developed a small patch of white skin (Vitiligo) on my chest, which is not uncommon.  Other side effects the nurse asked about:  nausea, fatigue, trouble focusing, mouth sores, tingling or loss of feeling in extremities (neuropathy).  I told her I do actually find that I do seem to have more trouble focusing and feel a bit spacy early on in the cycle, but that maybe it just a symptom of age :)

So that is my update.  The 12 week scans should be more telling regarding responsiveness, although Dr. Hwu reiterated that delayed response to Ipi is common.  Responses beyond 12 weeks are not unusual, but are usually apparent by 24 weeks.  Individual range and timing of responses show considerable variation, as many of you have read/heard before.  This does probably not add much to our collective knowledge about Ipi on this board, but I thought I should post how things are going for me in addition to my occasional post to my friends here on MPIP.

Last, but certainly not least,  I hope to go see Jerry Ellis in rehab in Colorado Springs next week.  All of us can draw inspiration, strength, and willingness to help others from Jerry's example.  He is one of a good number of remarkable people I have been fortunate to get to know on this board as each of us go forward on our journeys.  Like many of you, he had offered others here great support and a wealth of information, along with a wonderful sense of humor.  May we all follow his example!  Thank you all so very much for your ongoing support - it means very much to me.

Many Thanks,

Jim

 

 

 

 

 

 

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JoanR's picture
Replies 4
Last reply 9/17/2010 - 10:25pm
Replies by: bcl, Donna

I am a small part of the Victoria group who is advocating for a ban from tanning salons for 18 and under. We don't want parental consent, just an outright ban, which could be effectively enforced.  It came to light at last night's hearing when a tanning salon operator says she has her 9 year old pre-tan before winter holidays..when we have uninformed and irresponsible parents such as her, we need an outright ban. The opposite side indicted there are no States that have a ban, is this correct? bcl has done a fantastic job with it, and Julie, Mom of Ceri, shows her video..very powerful. If there are any Ozzies on line, what are some of your restrictions, I know your country is ahead of the game. Thanks for the help . J

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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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