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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DeniseK's picture
Replies 17
Last reply 8/11/2011 - 5:57pm

Hi all!!

I'm going to see my oncologist tomorrow!  Finally after 2 months since diagnosis and surgery!!  Anywho I'm supposing that I'll start my treatments of Interferon soon. 

A few questions about the process.  I heard that I either need a port or a picc.  Do they put this in on the first treatment day or before?  About how long after I see my doctor can I expect to start?  I really want to get this started and get it over with!!  Can anyone tell me the process??  What about tests before?? 

I'll find out tomorrow but I have no patience!  I wanna know before!!

Thanks,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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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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ShellyB's picture
Replies 4
Last reply 8/11/2011 - 4:25pm

hi,

i'm really keen to get as much information on ipi as possible. Would like to hear from anyone that was on it, and as to how it worked for them, or not. and what kind of side effects to expect. I am starting on Temodal next week for two cycles and then on ipi, as i'm in ireland, ipi cannot be administered as a first line drug, so i have to give Temodal a try, maybe this might work without ipi.

any info on this subject would be great, i had a look on the website but all that seems to stick out is the serious side effect, and serious they seem

 

thanks

michelle

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dutchhook's picture
Replies 5
Last reply 8/11/2011 - 1:39pm

Ok, so my wife went on the B RAF medication about 35 days ago. We saw a complete turnaround in energy, appetite and conditions starting in about 3 days. We went back to Chicago for her 28 day review, and tumors are shrinking, she's eating again, and did simple things like went to the grocery store, went to a family reunion and out to Applebees. I know it doesn't sound like much, but she hadn't done any of those things in months. She even drove her car for the first time.

As far as side effects, luckily, there haven't been many, like some others have reported here. She got a pretty good sunburn the other day, even after using 50 or 100 spf, hats, etc... but that is getting better now. She might be a little sore or tired, but we're not sure if it's the meds or not.

She did get 3 new spots, which they biopsied last Friday. We're pretty sure they're the squamous cell spots they told us about.

A new spot a few months ago was pretty depressing, now new spots are "Psssh, no big deal" (Knock on wood) We know this isn't a permanent cure, but she's going to make the most of her time here.

We are so happy with her local Onc, Dr Amatruda in Minnesota and her "study" Doctor, Dr Hallmeyer in Chicago. Teri got a big hug from Dr Hallmeyer last Friday, who was excited to hear of a(nother) success story.

As I'm writing this, I'm acutely aware of others who have not found an answer, temporary or permanent, and I still empathize with them. Especially those without the B RAF mutation.  So if it's possible, I'd like to share some good news with those who need it and share some hope for those who are still searching.

Steve & Teri

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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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JerryfromFauq's picture
Replies 7
Last reply 8/11/2011 - 11:04am

A newcomer came   into chat  from Denver and needs help for a friend that has ocular melanoma that has gone to her lever.  She has failed TACE and Ipi.   She had allergic reaction to the yervoy so is on prednisone right now.  She has dropped weight and lost hair & appeqrs ok outwardly but has a new tumor and another one getting larger.

She needs help with reearch. 

I have some questions about what type mutations have been discovered in this type melanoma and what other trials, drugs might help. 

Thank you for helping this lady.  I hope to get to visit them when ic Colorado during the net couple of months.    My dial p is too slow and I am running   out of time to get reaedy to leave for Colorado.

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

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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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Brettuss's picture
Replies 9
Last reply 8/11/2011 - 5:52am

 

My wife has what the dermatologist calls an "extremely high" number of atypical moles. Her father had melanoma, Stage III and is still alive and cancer free after 12 years. She went into the dermatologist on July 19th and they did a shave biopsy (I think) on the maximum number of moles they could do, five. Unfortunately, one of them came back positive for melanoma.

This scared the crap out of us. We have a 4 month old son. I can't imagine a future without her. She just became a nurse. We are finally hitting our stride. We are only in our late 20's.  This is insane.  Fortunately, the dermatologist thinks they got it all with the biopsy. Here are the official stats:

Depth of .75 mm, Clark's Level III, no ulceration, no mitotic evidence, margins clear.

They are going in on August 18th to take an extra 1 cm from around the site of the mole. If the tests there show no melanoma cells, and they have said they think it will, she will be given an 'all clear'. Based on the pathology results, there are no plans to do a sentinel node biopsy.

Is this news as good as we think it is? No melanoma would be better, but aside from in-situ, I think these results are pretty good - or am I grasping for something that isn't there? For those with experience, would you suggest pushing for a SNB even though it isn't officially recommended?

This was a huge wake up call to us. Her making her dermatology visit is also a direct result of the "Dear 16 Year Old Me" video, so THANK YOU to the people who posted that video. You probably saved her life.

Are there any of you who track your moles at home? What method do you use?

I want to make sure that we catch every last one of these bad moles right when/if they start.

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himynameiskevin's picture
Replies 14
Last reply 8/11/2011 - 1:29am

I realized not too long ago, that I haven't updated on here in some time. So here I am, there's not much to update on. Which in a way is good thing. I went back to the NIH about a month ago for my 6th follow up visit for monthly MRI and CT scans. The scans showed that there's still tumors all over my lungs and that they haven't really gotten any smaller from the previous month maybe a couple percent. If that. But the important thing is that nothing is growing, nothing new is showing and my brain is still clear. So of course, not the result we would all hope for. But good news and good result nonetheless. They've decided to let me take a two month break this time. And they're going to stop MRIing my brain since that last 10 MRIs show that it's been clear since the one nodule I had eradicated last year with the streaotactic radiation. So I go back August 30th. I don't know what is going to happen, but again, I'll cross that bridge when I get there. 

By the way, last week, July 23rd, was exactly one year since my dermatologist gave me the life changing news of "metastatic melanoma". The feelings and thoughts were indescribable, and although I hoped, I didn't imagine being where I am right now. Some IL-2, a little radiation, a bit of surgery, and some adoptive cell therapy has me feeling as physically normal as I ever have. Doing all the same activities I did before, (biking, camping, skydiving, music, swimming, reading, eating, loving, laughing, living). Even though I've still got these undesirables in my lungs, I can't really feel them. I mean sometimes I'll get a random pain. But everyone gets random pain so I don't know.  But I'm doing good for the most part. I've done more "living" in the last 8 months then I have in the last.... ..years.  I just hope I can say the same next year. I figure, if I can make it one year, well then maybe I can make it another. And then maybe do that again. And possibly again. And again... Next thing you know I'm 80. Oh that'd be nice...
We'll see.

 

Well that's all I've got for now. I'll keep updating time to time.
To everyone I know, and those I don't, I hope you're doing well.
-Kevin

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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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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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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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triciad's picture
Replies 8
Last reply 8/10/2011 - 5:53pm

Hi All,

I just got a copy of my path report from my surgery from 7/20.  It says "the mitotic index is 2-5 mitoses/high powered field (20x).  There is extensive tumor necrosis."

I would greatly appreciate it if anyone could translate this for me.  Please tell it to me straight.

Thanks!

Tricia

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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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