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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Gene_S's picture
Replies 4
Last reply 6/25/2012 - 2:50pm

Hello,

Many of you know that I am part of the Vervoy clinical trail with Vervoy (Ippi) with GM-CSF or just Vervoy and no GM-CSF. Mine is with the GM-CSF. Today was my first maintenance follow up treatment ( my fifth dosage of ippi ) ,as this is part of the trial. I am on the high dose version 10 mg/kg.  Any way back to the Subject.  My nurse today informed me that this trial closed yesterday (July 28,2011) as BMS has enough patients for their study trial. My melanoma tumors are regressing very well with the ippi and the GM-CSF treatments.

Best Wishes to all fighting this beast!

Gene, Stage 4

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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smap's picture
Replies 4
Last reply 7/30/2011 - 2:08pm

Hello All,

 

My mom has completed 4 infusions of yervoy and we are waiting to get the report back on her scans any day.  A couple things have changed recently and I was wondering if anyone else has experienced this after being on yervoy for a while.

1.  She is really confused:  She can't tell the difference between tylenol and clorospectic throat spray;  she can not remember any of the medicine she has been taking daily.  My mom is only 44 years old and before this took LOTS of meds for asthma and kept up with everything to a "T".  We are having to assist her with meds and remind her frequently of who she's talking to, etc.

 

2.  We ordered liver function blood work and it came back only slightly "off".  She is stage IV with mets in liver, spleen, lungs, rt. kidney, bones, and lymph nodes in the neck.  We have not had a scan in over 3 months (since before we started yervoy).  She's in lots of pain, with new spots popping up here and there, although they seem to be growing more slowly than usual.  We've been having to help her walk around and she doesn't make it very far until she's back in bed.

 

3.  Has anyone else experienced this degree of confusion and forgetfullness while on yervoy?  She is on 30mg. of morphine 3 times a day and takes more if needed in between.  But the confusion and forgetfullness is persistent, even when she hasn't had much pain med.  For example, this morning she had a 30 mg. morphine at 9 a.m. and at 1:30 p.m. she was confused about her medicine.  So, I feel like the morphine is not causing the confusion, it just knocks her out for about an hour after she takes it.  

 

Okay, I hope this wasn't too long or confusing!  Thanks in advance for any help!

 

Stephanie

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TracyLee's picture
Replies 7
Last reply 8/1/2011 - 7:03pm

Hi y'all,

Fourth and final ipi transfusion today. The consensus is that I'm not responding, I'm praying I'm a late response.

I must brag on my team. I was supposed to have my treatment yesterday afternoon. Hospital called and said I needed to re-schedule to 4 p.m. today. They couldn't obtain the drugs sooner.

Now, our transfusion center is open from 8 a.m. - 5 p.m. This process takes around 2.5 - 3 hours. So I knew 4 p.m. was too late to start. But...my doctor and his assistant volunteered to stay with me until I was done. I call that caring above and beyond the call of duty.

Next week up to U of Penn to start BRAF+ expanded access trial. Prayerfully I respond to ipi/BRAF. My neck is very distorted, although I'm able to hide most of it with my hair. Plus I had fluid in my lungs and had to be drained this past Wednesday.

Praying for a comfortable, and responsive, weekend to all the warriors and caregivers, on this board.

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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Replies by: MariaH, FormerCaregiver, Anonymous

Here is a list of locations of clinical trials around the world that use the TIL
(tumour infiltrating lymphocyte) treatment process:
http://www.clinicaltrials.gov/ct2/results?term=Tumor+infiltrating+lymphocytes&recr=Open&cond=melanoma
Interactive map:
http://www.clinicaltrials.gov/ct2/results/map?term=Tumor+infiltrating+lymphocytes&recr=Open&cond=melanoma

I also did a search for adoptive cell therapy and came up with these results:
http://www.clinicaltrials.gov/ct2/results?term=adoptive+cell&recr=Open&cond=melanoma
Interactive map:
http://www.clinicaltrials.gov/ct2/results/map?term=adoptive+cell&recr=Open&cond=melanoma

I think that the above treatment approach holds a lot of promise, and is certainly well
worth considering.

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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deirgey's picture
Replies 6
Last reply 7/29/2011 - 11:30pm

Hi all,

  I know there have been a lot of questions about Yervoy lately but my after my dad had his 2nd shot, he started to get extremely bad pain in his hip.  I haven't seen anybody post anything about this.  His doctors have ruled everything out so the only explanation we have is that it could be the Yervoy causing it.  This has been going on for several weeks so far and he's had no relief.  We are still hopeful that Yervoy is working for him though! 

Thanks!

Deidre (Father Stage IV)

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Cynthia C's picture
Replies 3
Last reply 8/1/2011 - 7:24pm

Just a little note to let you know how much I respect you and care about you. Thank you for sharing your lives with us. The bond you share is unshakable, inseparable and unstoppable. I believe you will meet again. May God protect you and guide you on the journey yet to come, keep you warm and safe in the shelter of his arms forever.

Cynthia C

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emilypen's picture
Replies 12
Last reply 8/1/2011 - 2:30pm

Hey All,

Jason just finished his 2nd dose of IPI today.  So far no side effects.

Unfortunately we found out yesterday that he now has at least 4 brain lesions. He had a CT last Friday and they were seen on that. So Brain MRI tomorrow and then we decide between WBR or Gamma knife. Our radiation oncologist is great and he's making sure things happen fast.

Our oncologist did say that Jay's bloodwork from Wednesday shows an increase in lmphocites, which is a positive sign that his body is having a response to IPI. So fingers crossed. Our hopes are that if the radiation can take care of the brain mets then hopefully IPI will kick in before any more show up.

Luckily he is having no symptoms of brain mets, so they're hoping they caught them early.

The pregancy is going well, 10 weeks now. Due date is Feb 2012, every part of me is hoping and praying that IPI kicks the beasts butt so he's here to enjoy the baby with me.

keep fighting,

em

 

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Lisa13's picture
Replies 6
Last reply 7/29/2011 - 9:02am

In 2 weeks, I start Yervoy after failing dacarbazine. I have a couple of questions regarding ipi in general:

1. My tumours in my lungs have been growing very slowly the past 3 months. If I didn't respond to ipi, what is going to be my options if these tumours grow more while waiting for the scans? (I'm BRAf -)

2. With lung nodules, did anyone experience fluid in the lungs or other symptoms while the inflammation took place?

After I met with my onc, I realized I hadn't asked these questions and won't see him until next week. Just thought I'd reach out to anyone whose had these experiences.

Lisa - Stage 4

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

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/29/2011 - 2:01am

I have had disagreements with some people using the Anon id, but I do support it's availability.to be used.  It has many good usge to.  Many times ladies hve come on withmelnome problems in the genitals and ben leary of giving out much info.  This usage has benefited many.  Most of them have learned that it is safe to talk about intimate locations more openly then they ever imagined,  They r not alone, but they might not have posted if the Anon was not available at the start.  I know a couple that have rubbed some others such that some would be negative just because that person posted. 

Some discussions of sex for melanoma patientshave arisen.  I even posted as Anon in those discusions.  Those posts were not negative nor "dirty", because sex is not a dirty word.  It is a vital part of most peoples life and needs to be openly discussed here at times.

So while I do disagree with the recent negative Anon comments, I do support its ontinuation and am very proud of the way Jill and Eric was supported for the way they hve conducted themselves in this whole affair and for being the fine people they are.  I suspect the supportive comments overwrote the negative feelings that were automtically felt by Jill.

 

Not really Anon.  Just trying to get your attntion here. 

JerryfromFauq

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

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Jydnew's picture
Replies 6
Last reply 7/31/2011 - 12:47am

Hi all,

My husband has his annual CT scan next Thursday, and as usual, scanxiety has set in early with me.  His oncologist says that this will be his last CT scan as the benefits of scanning do not outweigh the risks at this point.  He is 9.5 years out from a stage iiia diagnosis, and has been NED the entire time. 

I know it's magical thinking, but I have these terrible feelings that because the onc says this is his last scan, something will show up and it will be the start of hell.  My husband is looking forward to no more scans, but it worries me that we'll have no more real knowledge after this point.  I know that most/many recurrences are found by the patient, not on a scan.  I also know that at this point, it is much more likely that he will live the rest of his life melanoma-free.  However, I know that melanoma is a hiding bitch and that it can come back at any time.

I realize how whiny this must sound - worrying about things that could be, but that are not happening right now, when so many people here are going through real hell. 

Just needed a venting place to put some of my fear.

Thanks,

Wendy

wife of stage iiia survivor - dx Jan 2002. 1.3mm ssm on right tricep, no ulceration; snb found spread to 1 lymph node in armpit, complete lymphadectomy = NED since March 2002.

(I added these details for people who are newly diagnosed and are searching for long-term stage iiia survivors)

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Spread the word to smart melanoma researchers:  http://www.safefromthesun.org/about/innovative_research.html 

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Dynasysman's picture
Replies 10
Last reply 7/29/2011 - 10:28am
Replies by: Dynasysman, NYKaren, lhaley, TracyLee, Anonymous

Fierce Pharma led its daily coverage of pharmaceutical activity today with a story about BMS and Yervoy.  The story began:

 

Market watchers expected Bristol-Myers Squibb's ($BMY) new cancer drug to be big, but this fast? The company's second-quarter sales left Wall Street estimates in the dust and prompted an increase in profit forecasts, largely thanks to unexpectedly strong sales of the very-recently-approved Yervoy.

Indeed, the melanoma treatment just won the FDA nod in March, and it has already brought in $95 million, Reuters reports. "To come up with nearly $100 million in sales right out of the gate is fantastic," Credit Agricole Securities analyst David Maris, who had projected Yervoy sales of $20 million, told the news service. 

I suspect some will react by criticizing the high price of Yervoy therapy, but think about it this way:  Yervoy's strong start will motivate other BioPharma manufacturers to increase their investments in melanoma drug development, which is good news for all of us.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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sharmon's picture
Replies 5
Last reply 7/30/2011 - 9:51am

Hi, Brent has cellutitus in his right leg from lymphedemia conplications.  A few days ago he found a lump that was tender.  The doctor has put him on antibiotics but they don't seem to be working.  I need some help.  I know we shouldn't wait and we see the doctor on Friday.  I know this is serious and could use some feedback.  Thanks

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Hello all,

I'm scheduled for lower left leg wide exsicion (+skin graft) and SLNB on 8/11.  I'm equally as scared of surgery/recovery as I am of outcome...has anyone had this?  FYI, I plan to have drainage tube for SLNB.  

If so, can you share your recovery/experience with me?  I'm the mom a busy 5 year old starting kindergarten, I have a f/t job and a husband that travels...not a good combo for bed rest.  

Also, do you think I'm at risk for lymphedema?  Other than this I am healthy and in shape..should that be an asset in recovery?

I am grateful for any feedback; many thanks!

 

Nicole

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MariaH's picture
Replies 9
Last reply 7/30/2011 - 1:06am

We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study.  He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say.  He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda.  His oncologist, Dr. Khushalani,  totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots - one a node by his collar bone, and one a possible sub-q near his original primary.  Both were too small to see on a CT scan.  His brain MRI was clean, and nuclear stress test and breathing tests were good.  On a side note, he was B-RAF wild type - so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.

Hopefully we will know by next week what his decision will be for treatment.  Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised.  Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.

Thanks to all of you have replied over the last few weeks - you have led us in the right direction.

Best wishes to all,

Maria & Dave

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