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 54 year old father was diagnosed with Stage IV melanoma this past April after a tumor was discovered in his knee.  He just finished up a 4 dose cycle of Yervoy- the FDA approved version, not a clinical trial.  The scans just came back and he has new tumors and his current ones have continued to grow.  His oncologist provided information about Dacarbazine and a new clinical trial with a drug called SCH 727965 which is in a new class of drugs caled cyclin-dependent kinase inhibitors.   After reading the research consent form,  I realize that the purpose of the study is to establish a safe dosage and that it is a very new treatment.  I was curious is anyone has had any experience with this trial or drug?

What have others next step been after Ipi did not work?  That is the only treatment that he has recieved and it appears as though there are alot of other drugs/options out there.  We just do not where to go from here, any advice would be greatly appreciated!



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Anonymous's picture
Replies 4
Last reply 9/18/2011 - 7:56pm
Replies by: Lisa13,, Anonymous, mygirlmaddy

Please let me know if you have had any serious side effects from ipi


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newmanmark's picture
Replies 3
Last reply 9/18/2011 - 4:46pm

Hello Everyone,

Its been a long time since I have posted on this website.  To be honest it wasn't easy for me to come on this site and read all of the various stories.  I'm still not sure it helps 100% of the time but I miss everyone I use to correspond with.  I aplogise for not posting more often.  I am now 4 months into my interferon treatment.  Its been tough but tolerable.  Nothing new has been discovered and I'm approaching a year from my diagnosis day!  I couldn't have done this without my friends and family by my side. 

The main reason I am writing is because I have recently been suffering from anxiety and I believe its because of the Interferon.  Did anyone else experience this?  If so I'd love to know how you treated it.  I'm currently on Cipralex but that doesn't seem to be helping.  It helps with the depression but not my anxiety.  Is there something natural that could help?  I'm not opposed to pharmaceuticals but I'd love to try a natural remedy first.

All my love


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LynnLuc's picture
Replies 5
Last reply 9/18/2011 - 11:59am
Replies by: dian in spokane, LynnLuc, Anonymous, DebbieH

My Friend  Linda S ( Magnolia Springs) was put on the sister trial that I am on for melanoma that couldn't be resected ( mine was for NED pateints)...she has completed 2 twelve weeks of the anti PD 1 and peptides and has shown 30% reduction in her multiple melanomas, and no progression. Some melanomas are gone. She now begins the booster IV's of anti PD 1 every 3 months. She is the one in my picture with the shortest hair...although she now has much more hair!! Yes its awesome news!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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DeniseK's picture
Replies 15
Last reply 9/18/2011 - 10:02am

Hi Everyone!!

I'll be starting my Interferon on Monday 8/15.  They're putting in my PICC line on Saturday.  Kinda sux cuz I was gonna go to the lake and have a sort of going away party!!  :)  I'll be sure to keep it dry but not my tummy it will be nice and wet with some silver bullets!!  :) 

I'm not looking forward to this but I feel like I have to do it!! 

My new oncologist is super cool!  Never had a doctor hug me before!! 

Anyway I'll keep updating on how it's going!!

Denise  :)

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

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LynnLuc's picture
Replies 8
Last reply 9/18/2011 - 8:36am

I am asking if anyone can tell me something about the dyes. I have done scans and scans for most of my life.


3 months ago I had a reaction and I itched and hived on feet, legs, truck, back face, and arms starting about 5 minutes after the CT scan. They treated me with a couple IV pushes of Benadryl and said next time I would need to be premedicated due to allergy reaction.


Yesterday I had my scan and I had to take Medrol 32 mg 12 hours before and then again at 2 hours before as well as 50 mg of Benadryl 1 hour before. The tech says the premeds usually always work in 99% of the patients...I drink 3 glasses of medium stuff that taste like gator aid...then after they do a couple run throughs in the machine they use a drip of Optiray 320. This time they started the drip and ran me in the machine and on the way out I was starting a serious reaction to the dye. I went into shock and it was an awful ordeal yesterday. Hives, itching, urge to vomit, bottomed out on BP , breathing trouble, blacked out, they pushed steroids and Benadryl in my line and some other things. They hooked me up to monitors and over a course of time  I had 7 adrenaline shots to the chest. I was trembling and shaking all over like Parkinsons.They had to monitor me so they admitted me and kept me on O2 and gave me zantac in IV as well. They wanted to give me Duladid but my hubby and I said no.


 I didn't even get to do my MRI or my Anti PD 1. My question is I had to reschedule my Anti PD 1 and MRI...and the nurse says I need to take the premeds again. It had to be on the first drip of the CT dye I had I am scared because of the MRI dye...anyone know if I will end up in shock again??-  Dr W says I need to be certified as allergic to Iodinated  radio contract dyes and Optiray320 and I should never take the stuff again...why would I need to be premed again for the MRI? Isn't it also an iodinated dye?  It was so close to death yesterday and if one drop in my vein can do that what is going to happen if they use it again for the MRI? Do they have a substitute dye for people who are allergic?- Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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grungle's picture
Replies 2
Last reply 9/18/2011 - 8:17am
Replies by: Lisa13, FormerCaregiver

Hi all.

My wife just had her second dose of dacarbzine for secondary in her liver.  She is in a lot more discomfort this time, more so than the first dose.  I was just wondering what side effects others who had dacarbazine had,  if any, and how many doses were given.  We are having a ct on 29 September to judge its effectiveness. thanks

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Lisa13's picture
Replies 2
Last reply 9/18/2011 - 2:37am
Replies by: mclaus23, Napa K

I'm due for my third round of ipi next Wednesday. The closer I get to being done this treatment, the sooner I'll know if it's been working and or continues to work.

Today I started to feel a bit dizzy. Not at all the time - just waves from time to time. I also have an upset stomach - lots of stomach gas that rises up and makes me feel a bit nauseus.  Has anyone experienced this before??  I've also been experiencing acid reflux and burning in my chest which I also had with dacarbazine.  I've always had a bad stomach before cancer, but these treatments have made them worse! 

Any feedback would be greatly appreciated so I don't feel alone in these symptoms.

Lisa - Stage 4

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MariaH's picture
Replies 6
Last reply 9/17/2011 - 10:48pm

Dave finished his first round of IL-2, taking his last dose at 2:00 pm on Thursday.  If obtaining an immune response was the goal, he did it.  Blood pressure dropped to 70/35, heart rate tached - 160, and a 104.2 fever on tylenol, respiration down to 89 and put on oxygen.  It was the most brutal thing I have ever seen my husband (or any human being, for that matter) go through.  However, by 6:00 am he was sitting up in bed, and by 9:00 taking a shower.  We left the hospital at 2:00 pm on Friday, and other than feeling tired, the itch, and a slight headache he's feeling OK.

He was only able to do 6 bags, since the side effects wouldn't hit for 2 hours after the infusion and lasted right through the next scheduled dose.  That being said, we met a woman there who was only able to do 6 bags each week for her first round as well, and it worked on of her lungs mets (which Dave has) - and she was in for her second round.

I can't thank the people on this board enough for all the info regarding IL-2.  Nothing was a shock to us, and Jane's list brought up every issue he had. 

Hopefully his response means it's working - he'll be heading in for his second week on the 12th, and I already know the waiting for scans will be brutal. I pray this is working -

Best wishes to all the mel warriors out there,


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Anonymous's picture
Replies 5
Last reply 9/17/2011 - 10:34pm

Anyone know how VAL is doing?

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Jan in OC's picture
Replies 12
Last reply 9/17/2011 - 10:32pm

We have been on a roller coaster here in Texas.  Dirk had surgery to remove the large met in his brain on 8/19.  About two weeks later, he had some numbness and swelling on the left side of his face so spent labor day weekend back in the hospital.  Has finally seemed to recover from the surgery, but the latest MRI shows that even more brain mets have appeared and the mel is growing very fast throughout his body.  

Saw Dr Papa today and he wanted to start BioChemo right away...but there were no beds available...friday nights are tough!  So we will go in tomorrow and start...the combo includes IL-2, Interferon, Cisplatin, Vinblastine and Temodar instead of Carbo.  As soon as he is done with that, they want to do WBR to get those pesky brain mets under control.   

Dirk is pretty upset.  Dr "hinted" that this is our "last resort" treatment.  We cannot do the rest of theTIL trial unless his brain mets can be controlled....although the TILS are growing in that little petri there is still hope!

I don't know if I can even express what I feel, there is so much to deal with...I need any advice to help us get through the next 10 days....


laughter is the best medicine

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lizard's picture
Replies 1
Last reply 9/17/2011 - 10:32pm
Replies by: MariaH

Hi all

Just wanted to give a quick update and a huge thank you to all who responded to my earlier post. The gist of my question was that my wife has stage 3a and we were debating taking and scheduling the interferon. My job takes me out of town and we were trying to figure out how bad it was going to be - if I could safely leave her for a day or two.

We did decide to do the peg interferon and she gave herself the first injection Monday night. The only side effects so far have been waves of high fever, headache, serious fatigue, and backpain. This has been constant since the injectction, but nothing worse than that. She is trying to drink a lot and eat mild foods. With any luck it only gets better as things progress and we get back to something that feels like "normal" life soon.

See you

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Angela C's picture
Replies 11
Last reply 9/17/2011 - 10:12pm
Replies by: JerNYC, Anonymous, Angela C, NYKaren

Hi everyone.

Tuesday was my first dose of Yervoy. Prior to Yervoy, I was on the MDX-1106 trial. While on that trial, I experience sun senstivity and if I didn't cover up real well when going out in the sun, I would break out in a rash. I usually got it on my chest and sometimes on my neck. It usually would go away within a day.

So, Tuesday was my first dose of Yervoy. Yesterday I went on a couple of walks outside. One was 20 min the other was 30. I wore a hat and a long sleeve shirt, but I didn't button the top button of my shirt like I normally do to try and cover the skin on my chest. About an hour after my second walk, I developed quite the rash on my chest. Very red and bumpy. Then as the night continued, it showed up on my neck, behind both of my ears and on the top part of my chest. This morning I woke up and I have tiny little bumps on the skin around my mouth. My chest is less red, but the bumps are itchy today.

Now I'm trying to figure out what caused this. My last dose of the MDX-1106 was six weeks ago. Maybe some of that is still floating around in my system and caused this sun reaction? Or, maybe it's from the Yervoy? Or, maybe it's a combination of reactions from both drugs? The rash on the chest is not something new for me, but I've never had it show up behind my ears or on my face.

I know that a rash with Yervoy is quite common, but could it really show up the day after the first dose??

What do you guys think?


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Gracie's picture
Replies 11
Last reply 9/17/2011 - 9:30pm

I am scheduled to begin IL2 Monday morn.  I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b.  I had no tumors till now.  Presently I have 2, one in lung, one on chest wall.  I was unblinded today and yes, I was getting the ipi.  I guess you would say, "I am not a responder."  So now we try IL2.  My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation.  I will have a colonoscopy tomorrow to check for weaknesses or inflamation in bowel from ipi and treat colon with steroids for two weeks before IL2 if necessary. Doc has been attempting to talk to mel oncologists around country with patients on IL2 from ipi.  I was hoping to hear from someone on the board sooner.  I am having second thoughts about doing IL2.

Have any of you experienced IL2 after ipi?

How were the side effects for you?  perhaps more intense?

Were you a responder to IL2?  (Doc said it was more my "chemestry" that prevented me from responding rather than a "shelf life" of ipi over 14 months)

does anyone know if you don't respond to ipi you are as likely to not respond to IL2?

Has anyone experienced a bowl perferation and what is the long term repercussion?

I am very thankful for this board and all of you...a safe place to go during this time when I lay awake at night thinking of questions I forgot to ask doc. 

Gracie, stage 4

cancer is in my life, but is NOT my life

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Anonymous's picture
Replies 3
Last reply 9/17/2011 - 9:25pm
Replies by: nickmac56, Karin L


My bones in my lower back have been hurting. I am scheduled for a PET & CT scan soon.

Do Bone Mets show up on PET & CT SCANS? Has anyone been diagnosed with bone met detected on a PET or CT scan?

Is there a special scan to determine bone mets, if so, what is the name of the scan?

Thanks for your comments & feedback.


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