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.

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My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

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Anonymous's picture
Replies 3
Last reply 8/11/2011 - 10:52am

My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

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Jan in OC's picture
Replies 7
Last reply 8/12/2011 - 3:23pm

Well, we made it to Houston...staying in a hotel and all our stuff is on the U-haul in the parking lot!!  Evidently we arrived at the busiest time for moving and have not found a place to rent yet.  Was hoping to get it done before Dirk's MD Anderson visits...oh well....I'm sure we will have a home soon!

I have to say, our experience at MD is light years different from UCLA.  It used to take weeks to get an appointment for any tests there.  

We went in yesterday morning, saw Dr. "Papa", and in the afternoon went to get an MRI.  Got the call today,  tomorrow they have scheduled ECHO, Complete Pulmonary Function Test, and CT.  

Friday, its back to meet a Dr in targeted therapy and Dr Papa again!!  Then we will decide which treatment plan to go with.  I even met our Patient Advocate and and spoke to the Social Worker yesterday. Never spoke to anyone at our last place.  

We are still in a washout period from the E-7080, so it seems like new spots appear every day.  Dirk gets tired easily, but is very excited about the team approach and liked Dr. Papadoupolis!!  We are hoping for good things.

Jan (formerly in OC, now a texan, LOL), wife to Dirk

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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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