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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NYKaren's picture
Replies 6
Last reply 8/11/2011 - 4:30pm

Had my 4th infusion of Ipi two weeks ago tomorrow.  I was originally supposed to have a pet next week & see Dr. Wolchuk the week after.  So far, only 1 small piece of mel has flaked off & I've been noticing what looks like more small somethings--mels? satellites? traveling from my mel cluster (on temple, almost to ear) toward my eye.  We're only talking about an inch, 1.5 tops.  Now there are one or 2 almost in the corner of my eye.  When Dr. W first saw them, 4 weeks ago, there were only 2 or 3, and he said it might be discoloration from radiation and that he still thought my "disease was stable".  For my last infusion, he wasn't there.  I had a colleague (and friend) take a photo Monday, and I emailed it to Dr. Wolchuk & Dr. Halpern.  Dr. W's office called 10 minutes later and said that he had seen the pic & my PET was moved up to today and I'm seeing him @ 2:00 tomorrow.  

The Fellow got on the phone and said that even though the ipi might be working (and they don't really know--I guess will know more tomorrow--maybe) it sometimes takes so long to work that other problems might develop, and that it might be time to "revisit" my treatment.  She also mentioned that I'll be seeing the surgeon.  When, I don't know--I imagine soon.  How they can do surgery so close to my eye is beyond me.

 My rash/itch is gone.  does that mean the ipi stopped working?  I'm so glad that my stomach side effects are still there.  How bizzare is that?

I went to another doctor, completely unrelated, yesterday, and he said, "oh, stage 3, you're ok."  I pulled my hair back and showed him and he went white as a ghost.  I guess I shouldn't hate people--I should hate their ignorance, but it's hard.

Sorry if I'm rambling, I've kept this inside since Monday and I feel like I'm gonna burst if I don't get it out.

Comments/suggestions/advice welcome.  I'll try to post tomorrow after visit--I'm taking my husband with me.

thanks,

karen

Don't Stop Believing

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The amazing new gene therapy for leukemia that can be used for other cancers, hopefuly melanoma:

 

http://www.cbsnews.com/stories/2011/08/10/health/main20090800.shtml 

CBS Evening News August 10, 2011

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Are you living with melanoma? News from yesterday suggests that the FDA’s decision on investigational drug vemurafenib (Zelboraf) may come as early as this week or next.  The Melanoma Research Foundation may receive requests from newspaper or television reporters to speak with patients who have either been on the treatment or whose treatment decisions might be affected by the FDA’s decision.  If you have taken this drug or may consider this treatment if it comes to market, and you are willing to share your story, please take a moment to fill out the following survey: http://www.surveymonkey.com/s/V92M8SX.

Many thanks!

Shelby - MRF

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gabsound's picture
Replies 4
Last reply 8/11/2011 - 12:34am

Hi,

I completed first round of biochemo with Temodar, IL2 and Interferon. It went as well as I think it could have. Symptoms were mostly nausea, some anxiety and a rash which showed up on my face, chest and abdomen. I had a reaction to the Ativan and wont be having that again. I was also given Thorazine  for persistent hiccups along with nausea. I won't have that one again either.

The rash peeled a bit on my face as well as my chest. Nothing happened on the abdominal area.

My question to those doing IL2-what happened with the rash for round 2? Did it come in the same places? Did it get worse?

I start round 2 on 8/24/11.

Julie in Las Vegas

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AZ_Gal's picture
Replies 2
Last reply 8/10/2011 - 1:55pm
Replies by: MichaelFL, lhaley

Everything came back clear!!! So for now I am NED!!!! YAY!

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mwb1010's picture
Replies 10
Last reply 9/21/2011 - 1:14pm

hello....can anyone help me...I have been diagnosed with
melanoma and have had a wide excision and sentinel node biopsy. the
results of the snb came back with nothing present in the lymph
nodes...The depth of mine was 1.02mm but was all taken out with the wide excision. Does anyone know if I have anything to continue to worry about....I know that melanoma can come back anytime but I am still very nervous and my surgery was back in December 2010.  I know that there are people that are in a worse condition as I am but am I stressing myself out? Thank you in advance..

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Sisterofmine's picture
Replies 1
Last reply 8/11/2011 - 1:04am
Replies by: tricialeigh44

My sister (stage IV since may of 2010) completed all 3 rounds of IL2 and now after two CT scans we are now moving on to IPI.  I would like to hear from anyone that has had this course of treatment, and what the results were.

Thanks

My sister is not waiting for the storm to pass and is dancing in the rain. 

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KellieSue's picture
Replies 2
Last reply 8/10/2011 - 9:22am
Replies by: triciad, MichaelFL

Could be sooner rather than later.

http://www.reuters.com/article/2011/08/09/us-roche-melanoma-idUSTRE7783NK20110809

 

Kellie(from Iowa) STage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Lisa13's picture
Replies 2
Last reply 8/9/2011 - 8:38pm
Replies by: Nan in Nebraska, Rocco

Since ending dacarbazine a month ago, I started going back into my vitamin and supplement program. Mainly I focus on high does of Vitamin C, Vitamin D and a Potent Multi Vitamin and some green tea extract.

Tomorrow I start ipi and assume I won't be able to take any of these supplements during the trial - is this true or have others taken vitamins while on ipi? Gene S - you had mentioned back in June taking high dose Vitamin D and even red wine :) Was this okay with your oncologist or did you go against his suggestion? Can you enjoy a glass of wine on ipi? 

Lisa - Stage 4

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

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Lisa13's picture
Replies 1
Last reply 8/9/2011 - 7:42pm
Replies by: MichaelFL

There is alot of talk about this new vaccine that is showing promise in clinical trials. That being said, is it only for BRAF positive people and can it be used after ipi? 

Lisa

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

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Brief recap - I had a full, left lymph node dissection in June after reoccurence noted in May, 2011. Primary site was lower, left back in 2006. Initial PET/CT showed highlighted area to muscle in upper left thigh at same time as node detection. Removal of nodes showed 4 of 11 to be positive. Due to area in upper left thigh being positive, I was told I was Stage IV, resected. Within one week of surgery site was infected and I have since been medically packing the area. During this time I have gone for additional opinions.

I have traveled to Johns Hopkins and Sloan Kettering. My staging was noted to be Stage IIIb and Stage IIIc respectively. Johns Hopkins recommends Interferon since I would not be eligible for any trials at this time with no known, measurable disease. I am showing positive for BRAF. Sloan Kettering does not recommend Interferon nor do they use Interferon for any means of treatment at their Institution. Sloan Kettering feels there is not an added benefit with the use of Interferon, statistically, against reoccurrence coupled with the extreme side effects when taking this drug for the year. They would rather me not take Interferon and scan me every 3 months for the first year stating I have an 85% chance of relapse in the first year.

I would love to hear from those that elected to take Interferon and what assisted you in your decision process as well as  hear from those that didn't elect to take Interferon and why not.

Your feedback is much appreciated - I am fairly new to the board, since July, and truly feel the added benefit of being part of such a compassionate group of people, thank you.

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ShellyB's picture
Replies 7
Last reply 8/11/2011 - 11:13am

hi,

could do with some help here, was orginally diagnosed with melanoma in 2003 on my left calf and had interferon back then, i was ned for just five years, since then i had recurrences twice on the back left knee, on the left thigh and last year just above my pelvis,all had been surically removed. Just recently i found a spot on my left arm and on the back of my left rib, I was then sent for a PET scan to see if they had melanoma, which they did but there are other spots which some i now can feel, one on my left thigh, also on the back  of my right rib, just below the right of my chest and a spot just above my liver, there is also spots in my right hip.didn't realise one person could get it in so many places, and i feel i'm not getting the help i need, i'm living in Ireland. Til today i was waiting to hear about the Braf trial and if i could get on it, but apparently the trial is now closed, so the only option i'm left with is a drug called Temodal. I'm aware of the Ipilimumab drug but this is not licenced here in ireland and the only way i can get it is to try Temodal for two months and if this fails i can then have the Ipi drug,,just do not understand the system. I was always led to believe that chemo drugs like temodal are not effective on melanoma, so i hope i'm wrong but why have i do go through with this. what is this ipi drug and what kind of results does it have..any info would be grateful

 

 

desperate

michelle

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Replies by: triciad

There has been some talk on the board recently concerning alternative medicines, herbs, dietary supplements, botanicals and other products etc., so I just wanted to post a few websites I have used over the years. If one has time, both websites are good reading. One will also find other areas of interest as well.

American Cancer Society:

Dietary Supplements: How to Know What Is Safe

http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/DietarySupplements/dietary-supplements-advertising

Also from ACS: Complementary and Alternative Medicine:

http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/index

Memorial Sloan Kettering:

Herbs, Botanicals & Other Products

This provides a alphabetical or search evidence-based listing of information about herbs, botanicals, supplements, and more.

http://www.mskcc.org/mskcc/html/11570.cfm

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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TracyLee's picture
Replies 3
Last reply 8/10/2011 - 12:17pm

Hi y'all,

First, my deepest sympathy to those who are in such pain over the loss of their loved ones. I lift each of you in my prayers.

I was admitted through the ER last Monday, stayed until Wednesday. Had to have two lung drains, just to get to a stable point until I went to Philly.

I was joking with my family, in the past week, I've had 3 thoracentesis (drain my lungs), 5 chest x-rays, CAT scans of chest and abdomen. Honestly now! And I still had to go BACK to the ER for yet another thoracentesis this past Sunday.

I went to Philly yesterday, and left with BRAF meds in hand. While I was not impressed AT ALL with my original consult up there, yesterday was a very pleasant encounter.  So, my hat is off to the U of Penn staff, and Dr. Schuchter.

Per Dr. Schuchter, since I just completed ipi, and am now doing BRAF, I have a very good shot at a positive response. I'm sure many of the more knowledgeable board posters are well aware of this, but I was not and was happy to hear it!

Praying for those of us in treatments, lifting those who are suffering.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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