CURE OM Forum


Welcome to the CURE OM Forum, a community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment and from all over the world.

Questions about what to post? Visit our forum posting policies for guidelines.

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Sarah Elizabeth's picture
Replies 6
Last reply 10/4/2012 - 5:18pm

For those of you who have had Yervoy/Ipi... what was your dose and how did you tolerate it? 

Believe in six impossible things before breakfast.

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Sarah Elizabeth's picture
Replies 1
Last reply 10/6/2012 - 4:34pm
Replies by: eyecancerny

Does anyone know of a PD-1 trial that doesn't require a previous "fail" response to Yervoy/Ipi? There are a few in the works, but they aren't recruiting yet, and I can't wait. If I don't find something in the next few days, I'm going to move forward with ipi.

Believe in six impossible things before breakfast.

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Molly- CURE OM's picture
Replies 3
Last reply 10/6/2012 - 4:32pm

Good morning everyone!!!

This past weekend I was fortunate enough to take part in the MRF phone buddy training program.  Let me tell you, it is a wonderful program!!!  For those that don't know what a phone buddy is, a person that contacts the MRF can request to have a buddy.  The buddy is someone who will listen to what you have to say.  A non-judgemental person that will listen.  You can tell your buddy things that you may not know how to say to friends/family and the buddy will listen.  

Often times patients have a hard time communicaiting things when they are first diagnosed.  They can have a hard time expressing to their cargegivers how they feel about things and even have a hard time simply staiting "I am scared."   You can bounce ideas off of your buddy that has "been there, done that" and the buddy can give you ideas on how to state what you are feeling.  They buddy can also help formulate a list of questions to ask your physicians, point you in the direction of resources for clinical trials, and simply listen.  

If you, or anybody you know, could benefit from having a phone buddy, contact Mary Mendoza at the MRF either by phone or email.  I will include the links for her contact infor below.  

Have a great day!

Molly Stoffa

 

Mary Mendoza can be reached at 1-800-673-1290  or MMendoza@melanoma.org

The battle was lost, but the war must go on until a cure is found.

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ThatHomeschoolDad's picture
Replies 4
Last reply 10/5/2012 - 11:58am

So there was a big dustup today over on the ocumel list, which brings up the question:  How do newbies find their way to that list and how can this list be positioned to capture the same audience?   I think I found ocumel via the Choroidal_Melanoma yahoo group, so we can certainly spread the word there.  Having started in the Yahoo group and then moving to ocumel once I went Stage IV, I've tended to assume that was a normal progression.  I just never read that many yahoo posts from metastatic survivors.

There must be other sources.  Renee at Jefferson knows about this site, since she was at the conference, and we did, afterall, giver her a well-deserved standing O.   I know she used to steer new patients toward ocumel, and no doubt there are other health practitioners doing the same out of habit.  So how do we spread the word to them?

**CLINK CLINK**  (tapping on the glass)  Note to Dr. Sarah!  Do you guys have web tracking data to show from where new users come to this site?  Does MRF have banner ads anywhere with tracking data?

I still think the posting process here is way to slow, but it's smelling more and more like revolt over at ocumel -- you know, that faint hint of gunpowder, tears and bad cheese.   The time is ripe to shuttle more members this way.  Now if you'd all join me in a chorus from Les Miserables...

No one?

--Tom

Keep Rowing!

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Just came across this in the latest CURE mag:

 

tellingkidsaboutcancer.com

 

Seems like a decent site.  I know the subject came up back during the Philly conference.

 

--Tom

Keep Rowing!

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Kimmie Kay's picture
Replies 10
Last reply 10/3/2012 - 7:54am

I think I may have finally found where I "need to be" ! I posted earlier today on the otherforum and was directed here :)

I am hoping to find someone who has had radiation plaque therapy...will my vision ever come back in the treated eye? My radiation was a little over a month ago and when I had my check up yesterday, I already have a cataract forming. My vision (if you want to call it that) is 20/400?..legally blind in that eye...

While I am thrilled that the tumor is shrinking, I am worried about being able to return to work...I drive school bus, so obviously, without my vision my only source of income is in jeopardy! The Dr. says it could be 3-6 months before the cataract can be removed and after that he can't predict anything.

I really need to hear from someone who has been thru this (I have not been able to find any local help) and just found this site this morning :)

Kim

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TomKeepRockin's picture
Replies 14
Last reply 1/30/2013 - 1:47am

I am about to start with my first treatment of Yervoy ("Ipi")next week at Kimmel Cancer Hospital (Philadelphia) under the guidance of Dr. Sato. I have had one immunoablation (early Sept) to the liver and will have a second one next week as well. Diagnosis is several small lesions (0-5cm) discovered. Last May initial Cancer (Uveal) Melanoma to the eye and had no choice but enucleation - and chromosomal/genetic tests suggested high % of metastization. So, it's been caught relatively early with constant MRI's, bloodwork and other tests. So - just wanted to know other people are reacting to the Yervoy tratments,, any commonalities. As you all can see, by viewing the yervoy website is nothing short of a death sentence... Thank You! Tom 

"Be casual and do random things!"

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TomKeepRockin's picture
Replies 6
Last reply 3/28/2013 - 3:55am

Hi -

I am about to start with my first treatment of Yervoy ("Ipi")next week at Kimmel Cancer Hospital (Philadelphia) under the guidance of Dr. Sato. I have had one immunoablation (early Sept) to the liver and will have a second one next week as well. Diagnosis is several small lesions (0-5cm) discovered. Last May initial Cancer (Uveal) Melanoma to the eye and had no choice but enucleation - and chromosomal/genetic tests suggested high % of metastization. So, it's been caught relatively early with constant MRI's, bloodwork and other tests. So - just wanted to know other people are reacting to the Yervoy tratments,, any commonalities. As you all can see, by viewing the yervoy website is nothing short of a death sentence... Thank You! Tom 

"Be casual and do random things!"

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LindaP1017's picture
Replies 1
Last reply 9/24/2012 - 2:23pm
Replies by: ThatHomeschoolDad

 Hi.  I am new to this website.   My mom was diagonosed with Melanoma on her left shoulder 13 years ago.  She had extensive surgery to remove all infected tissue.  She did not have chemo or radiation because the dr. assured her that everything was clean .     In July while having a catscan for another issue, they found a spot on her lung.  They removed part of the lube of her left lung on aug. 27th.  They originally thought it was a Carcinoid tumor, but the pathology reports showed it was Melanoma.      Can this be related to her Melanoma from 13 years ago? Does she now have whats considered Metastic Melanoma?  Is there a chance it could now spread again to other areas??  i am so confused because there was 13 years between..... 

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edamaser's picture
Replies 17
Last reply 11/22/2012 - 2:13am

I am at a choice point, and am considering having PHP.  I would very much appreciate it if any of you who have had this procedure would share with me:

Where you had it, what you thought of the facility, the doc, the team.

What was your experience--pain, discmfort, how long to recover

Outcome--how long your liver mets remained stable, reduced, grew

Thanks so much

Esther

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Dear Friends,

 

My husband was on the selumetinib for his metastic ocular melanoma.  Scans showed progression of some of the liver tumors.  We're now trying to qualify for pd-1 trial.  Has anyone had good response the anti-pd 1 and a vaccines for liver and bone mets?  Please advise.  Margaret

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edamaser's picture
Replies 5
Last reply 10/4/2012 - 1:07pm

Sarah,

I had both Yervoy and Sutent, and so can speak to the side effects I had, but, as you know, everyone reacts differently, and this nutty cancer seems to do whatever it wants whenever it wants with no reason or regularity to it.  Thus, my experience really will not be a guide for you, however I'm happy to share.

Sutent kept me stable for almost 2 1/2 years, but that far, far exceeded everyone else on the clinical trial.  Initially I could not tolerate the full dose (37 mg), which gave me a horrendous headache 24/7, so Dr. Sato reduced my dose to 25 mg.  The headache went away, but I had other side effects:  including fatigue, diarrhea, bleeding hemorrhoids, and sores on the soles of my feet (the last was really a problem).

There is a new anti-angiogenic that I understand to be "stronger" than sutent, but has fewer side effects:  Axitinib.  It is not yet approved, but there are clinical trials with it (see clinicaltrials.gov).  That's all I know about it.

I had both PD-1 and Yervoy (at different times).  The PD-1 kept me stable for a short time, but then I had new liver mets.  I had immuno-embos (Sato) for those, then went on to Yervoy.  This kept my body mets roughly stable (a few bigger, a few smaller), but then I developed two brain mets.  I had those radiated, and will be scanned again next week to see if the Yervoy is helping.  Side effects from Yervoy were not that bad for me, but I'm sure you have heard stories from others about bad side effects.  I had fatigue, taste problems, didn't feel like eating, sores and sensitivity in my mouth, rashes, cycling from constipation to almost diarrhea, and more.

Let us know what you choose.

Lots of luck,

Esther

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This is a re-post from the other OM forums and list, so kindly excuse the duplication if you subscribe to multiple sources.  I'm casting a rather large net to try to hit as many eyeballs as possible.

Renee Zalinsky, RN, OCN, Senior Cancer Care Coordinator of the OM program at Thomas Jefferson, and all-around real-life super hero, is reporting that Dr. Sato and the Jeff team are swamped with requests from patients seeking second opinions.

If you are a current or former patient of Dr. Sato, or if you're already having Sato look at your scans while in treatment elsewhere, no problem.  However, the Jefferson team can't handle the influx of new scan review requests from non-patients.  This major hub of the OM world is, incredibly, run with just a few doctors and support staff juggling patients, consults, and original research.

Per Renee:

"Please let patients know for those that are "grandfathered" in, we will still review their imaging and give input.  At present, the patients on hold are those who are just sending their imaging for Dr. Sato's review with no intentions on coming to see him.  I understand patients wanting a second set of eyes looking at their imaging to confirm benign vs. malignant disease.....but this review process is time consuming and taking away from patients under active treatment and spreading everyone a little too thin."

Renee also encourages everyone to write letters to the hospital in support of Dr. Sato's work and to encourage expansion of the Metastatic Uveal Melanoma program.  Here are the big guns to contact:
 
David P. McQuaid, FACHE
President
Jefferson University Hospitals
111 S. 11th Street
Gibbon Building, Suite 2210-L
Philadelphia, PA 19107
 
and
 
Richard G. Pestell, MD, PhD, MBBS, FRACP, MBA
Chairman/Director
Cancer Biology
Kimmel Cancer Center
Bluemle Life Sciences Building
233 S. 10th Street, Room 1050
Philadelphia, PA 19107
 
and
 
Neal Flomenberg, MD
Chairman, Medical Oncology
834 Chestnut Street, Suite 320
Philadelphia, PA 19107

 

--Tom

Keep Rowing!

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edamaser's picture
Replies 1
Last reply 8/22/2012 - 4:51pm
Replies by: margaretrogers57

Hi all,

 

I just want to share a bit of good news.  We can all use good news in this ocean of glum occurrences in which we find ourselves.

Having had two brain lesions, which were stereotactically radiated, I just had a 2-1/2 month follow up brain scan:  NO NEW ONES!

On to body scan in September.

Esther

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margaretrogers57's picture
Replies 4
Last reply 8/22/2012 - 5:30pm

Does anyone know if chemoembolization would help for many small liver tumors.  We have 50 and the largest is 1.6 cm  Help..Margaret

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