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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j.m.l.'s picture
Replies 3
Last reply 9/6/2011 - 9:41am
Replies by: Lisa13, Gene_S

Melon. keeps multipyiing. going on Yervoy next week. CAN ANYONE SHARE THEIR EXPER. WITH THIS DRUG, SIDE EFFECTS, DID IT HELP THE CANCER, IF NOT WHAT WAS NEXT STEP. THANK YOU

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Lori C's picture
Replies 9
Last reply 9/10/2011 - 10:46pm

I hope this is okay.  Many of you "know' Shelly in Switzerland, the expat from Vermont who, with her family, had moved to Switzerland and had been fighting stage four melanoma.  Shelly's positive spirit always inspired me.  She passed away last week.  Here is her Caring Bridge site http://www.caringbridge.org/visit/shellypilcher1

Shelly had experienced good results with treatment, and had enjoyed what her husband called "the gift of extended life" as a result of it.  She was an amazing warrior.

 

Lori Challinor

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/6/2011 - 8:56am
Replies by: nickmac56

I have just been diagnosed as a stage IV melanoma patient, and have been told these are the best therapies out there. 

Has anybody been through these and if so, how are you doing? what are the side effects, and what is the difference between the 2?

Insert Generic Inspirational Motto Here

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An interesting and indepth article of what is being worked on in the melanoma research world.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3078100/?tool=pmcentrez

Future perspectives in melanoma research. Meeting report from the "Melanoma Research: a bridge Naples-USA. Naples, December 6th-7 th2010"

 

I'm me, not a statistic. Praying to not be one for years yet.

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Lisa13's picture
Replies 10
Last reply 9/9/2011 - 9:53pm

It's been awhile since we've done a rollcall for Yervoy/ipi, so I'd love to hear from the people who were complete/partial and non-responders.  There are many of us who have recently stopped or started treatment, so I'd like to see how everyone is doing. There's been a few postings in the past few days of people failing on this treatment and I'm getting worried and needing some ipi success stories pronto!

I'd also be interested to hear the non-responders next line of defense, especially from BRAF negative people.

Best of luck to each and everyone of us fighting this battle

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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glewis923's picture
Replies 16
Last reply 1/3/2013 - 12:26pm

Fortunately,  I started Zelboraf (new Roche name for "Braf drug") a week ago = Aug. 29th took 1st dose riding thru Macon ,GA. on way back from Winship / Emory in Hotlanta.   Question:

does anyone else on here have brain tumors AND have taken/are taking Zelboraf or GSK equivalent?

If so, have it help with brain tumors?  

 

Very thankful just to be hanging around; feeling quite well overall- best in 2 years actually!  If I can help anyone with ???s  about my experience and/or my current Zelboraf regimin -  please ask !

 

Take Care ALL  & God Bless You-   Love, Grady & Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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HelperDaughter's picture
Replies 10
Last reply 11/21/2011 - 8:50pm

Hi everyone,

My mom was diagnosed with Stage IV melanoma in June 2011.  She told me in July.  I've been crying my eyes out practically every day since.  Although she has my father to help her out, they're not the type to really advocate for themselves.  My job is tangentially related to medicine (I'm a medical malpractice defense attorney), so believe me, I know how important it is to BE INFORMED and know your options. 

They've had a consult at Sloan Kettering, which I understand is a good place to go for this sort of thing, and apparently the oncologist there agreed with my mom's local oncologist's recommendation for ipi.  It's weird, it seems here on this board that people were presented with choices - like ipi v. IL-2, for example, or as a new diagnosis, perhaps a clinical trial.  My parents (as far as I can tell) pretty much were just offered the ipi. i hope it's not just because it's the "drug du jour." At some point you have to trust your doc, I get it.  (maybe it's just my job that makes me cynical)

My mom is 64, in fantastic health (other than Stage IV cancer, that is) - before this, she didn't take a single prescription med.

The original "spot" was removed from her leg (thigh, i believe) in 2003.  The 2011 diagnosis was prompted after she noticed a right inguinal bump.

As of June 2011 (her baseline scans) this thing has metastasized to her brain (1cm), duodenum (~1cm), right lung (1.7 cm x 1.5 cm), left lung (6mm), and, obviously, the lymph node (1.8 x 1.7 cm).

She is BRAF negative.

She has some slight psoriasis on her elbows and knees.  This is an autoimmune disorder, which I understand can disqualify her from some trials.

She had SRS treatment on the 1cm lesion in her brain.  I was surprised to find her doc was basically 100% confident that the SRS would completely annihilate that lesion, but i guess the fear is that others will arise. 

She has had three ipi treatments.  Other than fatigue, she has experienced no significant side effects and there is no indication that she won't be able to finish the fourth.  She said that at one point, the inguinal bump grew, got kind of inflamed and became tender, but that this reaction stopped.  Unfortunately the bump is still there, and she can't tell whether it's smaller than it was at baseline.

So here are my questions:

1) at what point are you declared a "non-responder"?  At the time of the CT scan?  I have seen the term "late responder" thrown around.

2) is the fact that that the inguinal bump is still there after three treatments a bad sign?

3) after ipi, what other options are there for my mom?  I know she can't have the BRAF drug. I know there's IL-2, which sounds just horrible, and chemo/radiation, which don't seem to work.  What else is there?

Thanks for your time, guys.  

Amanda 
 

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eaca's picture
Replies 3
Last reply 9/21/2011 - 12:35pm
Replies by: eaca, JerryfromFauq, King

Since I haven't found a lot of information on others using pegylated Interferon on this board, I thought I would just post my experience with starting it on Friday, to share with others.  I'm stage IIb and on a clinical trial combining peg-intron with a peptide vaccine. I give myself Peg-intron injections once a week and the vaccine is given by the Dr once every three weeks, all of it lasting 6 months.  So my first injections were on Friday afternoon and I experienced what I gather are the typical interferon reactions of severe chills, aches, headache and fever starting about 5 hours after the injections.  It was a pretty miserable night, as I kept waking up to more aches and fever or to go to the toilet because I was drinking gallons of water.  I was taking Tylenol and as my Dr said to steer away from Ibuprofen, I was concerned about reaching the dosage limits. The effects were so bad that I really felt I needed more Tylenol after 4 hours, but then if I kept up that pace I would have run out of options before 24h had gone by, so I slowed down a little.  The effects peaked probably around 10 hours after the injections, but I stayed pretty miserable most of the day on Saturday until about 24h after the initial shots.  I had some slight nausious feelings, but by eating small amounts I was able to keep that under control.  Then I finally managed to get myself up and showered and dressed to go see some friends in the evening.  The second night was much better already and the second day has been very manageable, with just a few remaining aches and vague fuzziness in the head.  So here's hoping the coming weeks don't get any worse.  I'm going to ask my Dr about other alternatives to Tylenol in case I need more of something on the first night.  Otherwise, I'm determined I'm going to do this!

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bball's picture
Replies 3
Last reply 9/5/2011 - 9:14pm

I had 3.5mm in cheek removed 10 months ago up to this time I have had NED took a CT scan of chest and abdomin 1 month ago all clear. 1 week ago I noticed 1 enlarged lymph node on each side of my groin. I also had taken a injection of Mistletoe about a week prior to noticing nodes. Any experience with any of this

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I asked if anyone thinks I am doing the best thing by going on Yervoy as the cancer is getting worse. I am scared about the side effects. BUT HAS ANYONE HAD EXPERIENCE WITH THE NEW DRUG ZELBORAF.

I need info quickly. thanks Jim

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j.m.l.'s picture
Replies 6
Last reply 9/5/2011 - 12:30am

Please help. This is all new to me. Am I doing the right  thing in starting this treatment given the serious side effects. Operation now not possible. Had 4 prev. opeations and cancer progressing. thank you for fast response.

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Becky C.'s picture
Replies 6
Last reply 9/5/2011 - 11:43pm

,Hi. I had a right groin dissection about 4 weeks ago.  Thankfully all nodes were clear. I was wondering if anyone else that had this surgery has experienced pain and soreness down the inside of their leg. Its like a deep down soreness. It is gradually getting better. I actually am sore on the inside of my shin sometimes. I appreciate any feedback.

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sharmon's picture
Replies 2
Last reply 9/3/2011 - 7:37pm
Replies by: washoegal, Anonymous

Hi,  Brent has been stable on the Gsk mek/ chemo combination for 18 months.  14 of those months with mek alone. When he progressed then they added Alimta. So for the  last 4 months and with chemo added he has been stable again.  The problem is the chemo is very hard on him.  He almost always lands in the hospital after his infusion.   Two months ago they reduced the chemo and there was no difference.  This past week when he went in for the infusion his blood counts were too low.  So he has to go back in two weeks to see if he can receive the chemo at an additional 25% reduction.  What he has been on is working to keep him stable.

Has anyone been through the reduction of chemo and does it get better at the lower doses?  We have another trial he can move to in October using two inhibitors. These two new inhibitors are not from GSK.  It is scary to move, but the chemo does reduce his quality of life.  And there is no way of knowing if the new combo will even work for him.

If we choose to move to the new combo then we need to not do the upcoming infusion to begin the washout  period. 

If anyone has any thoughts or has been through a similar experience I could use some input. 

Thankyou for all your help and input.  This forum has kept me sane.

Sharmon

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rjcravens's picture
Replies 4
Last reply 9/3/2011 - 9:59pm

What can you guys tell me about these results? What does it mean if its Spitzoid type??

 

Malignant Melanoma without ulceration, at least Clark level IV.

Breslow thickness greater then 4.00mm

Mitotic rate: 3/ mm2      What does that mean????

Radial and Vertical growth are present

morphology is epitheloid........what does that mean??

Regression is absent

Microscopic satellites are absent

Neurotropism is absent

Angiolymphatic invasion is absent.

Involves deep margin

I would just like someone to tell me what this all means and be honest with me.

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boot2aboot's picture
Replies 7
Last reply 9/6/2011 - 1:38pm
Replies by: Laurie from maine, Richard_K, TracyLee, Anonymous

I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf...i want to know everything you are going through...

since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine)  i did or which did me in...i am leery of side effects...thank you.

boots

don't back up, don't back down

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