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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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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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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EricNJill's picture
Replies 57
Last reply 8/5/2011 - 5:31pm

I'm sorry I haven't been on here so much.  I just wanted to let you know that Eric is still here with us.  He is such a fighter.  He is less alert and his organs are slowing down but when he's awake he is able to talk to us.  I took some pictures of his leg last night.  They are very graphic and hard to look at.  His doctor said that the cancer is causing the tissue to rot. 

Thank you all for your prayers.  JillNEric

Video of pictures:  http://youtu.be/WhROjs27CDg

This is a blog post about the man I feel in love with:  http://www.melanomasucks.blogspot.com/

 

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lvitelli's picture
Replies 15
Last reply 8/2/2011 - 1:01am
Replies by: JerryfromFauq, lvitelli, washoegal, nicoli, Janner, Anonymous

I was recently diagnosed with Stage IIIA melanoma. I had a lymph node mapping the same time the melamona was removed from my left forearm. A microscopic cluster of melanoma was found in my sentinel node. That node and two others were removed. I still have my remaining lymph nodes under my left forearm. At this time, we do not know if there is any cancer in those remaining nodes. My doctor does not recommend surgery. In her opinion, the chances of melonoma outweigh the risks and negative effects of the surgery. Her recommendation is an ultra sound on the under arm every four months and a PET scan every six months. I've had one of each and so far, so good. I'm  just not sure what to do. She feels very confident in this treatment. I believe in her but have to wonder if I should do everything possible to make sure the cancer isn't there and doesn't return. I've adjusted my diet to eliminate the so-called bad foods while drastically increase the "good" foods. I drink green juices, eat lots of garlic, onions, kale, etc. I take an immune boosting multi viatamin along with D and C and drink three cups of green tea a day. Wondering if there is anyone out there with a similar situation? Anyone that had the surgery not knowing if there was any cancer in the remaining lymph nodes and the effects being felt now. I am very positive and optimistic but also want to do whatever I can to watch my beautiful 4 year old grow up.

Thank you

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Manubuzzi's picture
Replies 8
Last reply 7/29/2011 - 10:30am

 

Greetings to all 
 
It has been approximately 2 months since I have written, although I have been keeping an eye on this site to see how everyone is doing.  We have really had 2 really great months, and I have been taking advantage of this time to be with my mother and enjoy her company.  After the last surgery that my mother had to undergo, to take out part of her skull that was infected, everything got better!
My mom is great!  Always in high spirits and so so strong, she's walking :) for short periods, but walking all the same!  She's always positive with a lot of faith that everything will turn out well.  She is completely lucid and has had no side effects of 4 seperate sessions of Temodar.  This last few months has really renewed our hope!
 
Now, the next step is to start her on IPI.  Here in Argentina, this is not so simple- the drug hasn't been approved, and only a handful of doctors are allowed to administer it.  Also, she has to do several things in order to be able to even attempt to have the treatment.  We have a lot of hope for this new treatment.  We know that it's going to be an uphill battle, but to see her like this, so strong, it's almost impossible to imagine a negative outcome.  We are from a small town, far from the city of Buenos Aires.  And to do this treatment means moving to Buenos Aires for 6 months, not an easy thing to do.  But we are grateful for the chance... 
I want to thank all of you and tell how things were going.
I always want to write in different posts.. but my english is not the best (this was written with my girlfriend's help) and I do not want any misunderstanding caused by my bad english, especially when we are talking about difficult issues.
I continue praying for all of you who are fighting this terrible disease. All the best to you
 
Manuel
Patient son
Argentina

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