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.

Expand/ Collapse Topic
 
Replies By
View Topic

I keep a line int he water over at Ocumel, and thought this was worthy of a repost.  A quick scan of PubMed shows conflicting results regarding early p53 studies, but the the reports are also years apart, which may point to an evolving understanding.  Interesting, anyway.

http://tinyurl.com/p53nytimes

and

http://www.ncbi.nlm.nih.gov/pubmed/16784742

vs.

http://www.ncbi.nlm.nih.gov/pubmed/11374804

 

--Tom

Keep Rowing!

Login or register to post replies.

Hi there to everyone that may read this.

I am Renae and live in the South Island of New Zealand. I am married to Michael and we have 3 children ranging from 16 to 3.

A month ago Michael was diagnosed with metastatic melanoma. Stage 3.

2 weeks ago he had a level 3 auxillary node dissection. yuck.

When we were given his diagnosis when his histology and ct results were back (the day of my 33rd birthday) we were told quite clearly that there is nothing that can be done for us here in NZ. There are no trials running and the Doc also stated very clearly that radiation and chemo were of no help to us.

The primary has not been found,

The Doc removed 18 nodes and thought as she was doing it that they were all riddled as they were black.

However apparently they are all clear bar the one that we definately knew of, the tumour in it measured 5.5cm. Huge apparently. Looks revolting also!

The specialist found out that we were working out what day to head to Mexico or anywhere really to find some sort of treatment as there was nothing here to cling to and at our next appt (last wednesday) she said that because of the size of the thing we were allowed to try radiation. We have health insurance so atleast there will be no extreme wait or congestion in the process.

I am however having a real issue with this, why do we put ourselves through this when the chance of it doing any good are so small? There is noway (that I am aware of) of the docs being able to tell us if the radiation has achieved anything or not.

Is it worth it while the primary is there somewhere lurking??

I am really wanting to find out from anybody and everybody about any treatments. Conventional or otherwise. We will go anywhere and spend anything to fix Michael.

He is the love of my life and the best father to our children, I am not going to take this lying down. I will get Michael through this and win this fight.

I am aware that alternative is a bit airy fairy but maybe there is something in it?

We have no trials here in NZ available to us, apparently we could try one however when he is in the last months of his life category. Cheers that is verey beneficial NZ.

I hope that everyone has a very merry xmas and a fantastic new years!

We will be up our gully, sitting on our deck having a bbq and drinking a few speights beers. Doing all the things we shouldn't be really, very soon there will be no fun until Michael is all better!

Merry Xmas

Renae x

Login or register to post replies.

Hi there to everyone that may read this.

I am Renae and live in the South Island of New Zealand. I am married to Michael and we have 3 children ranging from 16 to 3.

A month ago Michael was diagnosed with metastatic melanoma. Stage 3.

2 weeks ago he had a level 3 auxillary node dissection. yuck.

When we were given his diagnosis when his histology and ct results were back (the day of my 33rd birthday) we were told quite clearly that there is nothing that can be done for us here in NZ. There are no trials running and the Doc also stated very clearly that radiation and chemo were of no help to us.

The primary has not been found,

The Doc removed 18 nodes and thought as she was doing it that they were all riddled as they were black.

However apparently they are all clear bar the one that we definately knew of, the tumour in it measured 5.5cm. Huge apparently. Looks revolting also!

The specialist found out that we were working out what day to head to Mexico or anywhere really to find some sort of treatment as there was nothing here to cling to and at our next appt (last wednesday) she said that because of the size of the thing we were allowed to try radiation. We have health insurance so atleast there will be no extreme wait or congestion in the process.

I am however having a real issue with this, why do we put ourselves through this when the chance of it doing any good are so small? There is noway (that I am aware of) of the docs being able to tell us if the radiation has achieved anything or not.

Is it worth it while the primary is there somewhere lurking??

I am really wanting to find out from anybody and everybody about any treatments. Conventional or otherwise. We will go anywhere and spend anything to fix Michael.

He is the love of my life and the best father to our children, I am not going to take this lying down. I will get Michael through this and win this fight.

I am aware that alternative is a bit airy fairy but maybe there is something in it?

We have no trials here in NZ available to us, apparently we could try one however when he is in the last months of his life category. Cheers that is verey beneficial NZ.

I hope that everyone has a very merry xmas and a fantastic new years!

We will be up our gully, sitting on our deck having a bbq and drinking a few speights beers. Doing all the things we shouldn't be really, very soon there will be no fun until Michael is all better!

Merry Xmas

Renae x

Login or register to post replies.

I just ordered the book Anticancer: A New Way of Life by David Servan-Schreiber after a helpful recommendation on another OM Cancer online discussion forum.  An excerpt mirrored the advice I was given by a woman at the lab that is doing my genetic testing:

"The first thing I learned is that we all carry cancer cells in us, even if only a few. But we also have natural defenses that usually prevent these cells from becoming an aggressive disease. These defenses include our immune system; the bodily functions that control inflammation; and foods that reduce the growth of blood vessels needed by tumors."

I also have a stack of Kris Carr books.  As much as I find her peppy cheerefulness a bit draining, (this is all too new to me to think of anything about Cancer to be 'Sexy' quite honestly).  But skimming one of the books...I am warming to her.  I'd love to focus my energies more and find all this reading and researching is making my cancer diagnosis take up 90% of my life (with the other 10% trying to figure out how in the world we are going to AFFORD all these medical costs.)  Has anyone else read and benefitted from any of these "Crazy, Sexy, Cancer" series?  THANKS!!  Sue from CT

Login or register to post replies.

sunnybunch2's picture
Replies 1
Last reply 12/13/2012 - 5:30pm
Replies by: Molly- CURE OM

Hi,

 

My brother is having his first embolization for metastic ocular melanoma with liver mets next week.  Looking for anyone that has had them and exactly what your side effects were and how long they lasted?.  When were you able to return to work?

Login or register to post replies.

Molly- CURE OM's picture
Replies 8
Last reply 12/13/2012 - 3:08pm

Good morning!  The Q & A with Dr. Harbour is now OPEN!  Please remember that the Q & A session will be hosted from 9:00am EST until 9:00pm EST.  The questions will then be submitted to Dr. Harbour by CURE OM staff.  Please understand that not every question can be answered.  We will do our best to ensure that your questions will be answered.  Check back to the CURE OM forum on Monday to see if your answer has been posted.  

To post a question, post it as a reply to this thread.  If you posted a question the other day, please repost your question on this thread.  If you have any questions, or need assistance, please contact Molly at mstoffa@melanoma.org.  

Happy Posting!

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

Login or register to post replies.

Molly- CURE OM's picture
Replies 4
Last reply 12/10/2012 - 9:47pm

Hi everybody!  Some of you may have seen me post this on the OM support page on facebook, but I wanted to post it here as well.  I am thinking about hosting a CURE OM meet and greet in January somewhere in Chicagoland.  This event will be a very informal gathering for us to just sit and talk in person.  At this time I am looking at 1/19, 1/20, 1/26, or 1/28.  Again, this will be very informal.  It will be a time to sit and talk with eachother.  Please let me know if you would be interested in coming to something like this.  I will post more details as they become available.  

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

Login or register to post replies.

Hi,

Has anyone had chemoembolization usiing either BCNU or doxorubicin drug to treat metastic ocular melanoma liver mets.  I was just watching the Cure OM eyes for a cure 2012 and it looks like thomas Jefferson uses the BCNU they also mentioned that you could have chemoembolization thru out the US however many of the interventional radiologists don't have experience with BCNU drug.

 

Also where have patients had chemoembolizations done thru out the US or have most patients gone to the specialist centers for OM?

My brother is planning on going to Brigham and Women's in Boston and the doctor said they do not treat many ocular melanoma liver mets and they use the doxorubicin drug.  So I am thinking are they using this drug because they mostly treat other types of cancer mets and that is whay drug is used for those other cancers and maybe they should use this BCNU like Thomas Jefferson.

 

Thank you.

Login or register to post replies.

Replies by: parismom, ThatHomeschoolDad, Anonymous, Molly- CURE OM

I was just informed by Dr J. William Harbour, ocular oncologist and researcher at Bascom Palmer in Miami (who did my biopsy), that there will be a special segment on his uveal melanoma cancer research airing this Sunday, December 2, 2012 on the TV program "CBS Sunday Morning", starting around 9 am Eastern time. Feel free to spread the word elsewhere. This will be similar to the earlier NY Times piece on the subject, but much more in depth and personal.

 

Peter L in Leiden, Netherlands

 

PS

Think of us European OM patients who will not be able to watch this, not even online repeats, as these get blocked by teh broadcasters for European viewers.

Login or register to post replies.

edamaser's picture
Replies 10
Last reply 11/28/2012 - 5:33pm

I would like to share with you something that has come up for me as a consequence of metastatic cancer that I never heard of before, and since I've been at this for 9 years, it is a bit surprising. I would like to inform you all with metastatic cancer that this might happen to you as well.

 The condition is hypercalcemia--too much calcium in the blood. In my case, I ended up in the hospital for 3 days while they figured out the situation and what to do about it. They think it is caused by the melanoma itself, which releases some substance that encourages calcium to be leached out of my bones. For anybody this is pretty serious, but for an old lady like me, it's scary. I will end up getting zometa, which only will slow down the leaching. Nothing can replace the calcium already leached out. Be sure to note that I do not have any bone mets, if my hypercalcemia is caused by cancer, it is all soft tissue cancer.

 The possible symptoms are wide-ranging: for e.g., confusion, memory loss, constipation, abdominal pain, kidney stones, etc. etc. The condition of hypercalcemia is discovered by a simple blood test.

Has anyone encountered hypercalcemia before?

Esther

 

Login or register to post replies.

Chris Jordan's picture
Replies 2
Last reply 11/22/2012 - 4:25am
Replies by: lak

Saw this in a tweet from @MRFCureOM: http://talkabouthealth.com/can-a-very-large-choroidal-tumor-truly-be-low-risk-if-shown-so-in-monosomy-3-test-result-i-thought-large-usually-meant-high-risk wherein Dr. William Harbour pretty much discounts the genetic test for monosomy 3 in favor of the Class1/2 Castle Biosciences gene expression test.  He says, in part, "I do not trust the monosomy 3 test, so I cannot specifically comment on that aspect of the question. The monosomy 3 test is inferior to the Castle Biosciences test that gives a class 1 or class 2 result. All but 2-3 centers in the US are now using it."

I know the two tests were discussed in the June CURE OM web educational event but my question is, does anyone know what Dr Harbour is basing his  opinion on?  Is there some study that indicates one is a more effective predictor or metastatic OM or is this just a little salesmanship and a case of "not invented here?"

Login or register to post replies.

I cannot believe that noone has posted yet about this weeks Webinair.

 

Excellent.  Thankyou very much cure OM and i was able to ask a question!

Please thank Dr Weber and Dr Flaherty for their informitive talks.

 

I would like to ask furhter questions - sorry i guess I never grew out of the "Elephants Child " syndrome.

 

To Dr Weber I would like to ask further about Ipilimumab.

3 years ago the recommendation was to permanently discontinue Ipilimumab if the ALT/AST rose >7x normal.

Now it is at 5x normal.

This must mean that some people who survived the hepatitis and maybe got a response will still be alive.  So obviously this is a saftey issue. However is it that as the drug was rolled out into more widespread practice some of the less experienced centres failed to appreciate the risks soon enough. In his experience was there a link to those with the more severe hepatitis -5-7 x normal having clinical benefti from the drug.  Would he consider reintroducing Yervoy in these patients if they were to relapse now 3 years later. Or would he observe the current saftey guidelines - the tempatation for patients with few options must surely be to risk the drug again? Which way would his clinical experience push him?

Also to Dr Weber- concerning T lymhocytes and TIL

Are the size of the metastases in OM relevant in the T lymphocyte infiltration. Are smaller metastases less likely to have the "bad" lymphocyete- the exhauseted ones . Is it possible that substances that are released by the tumour cells which cause the exhaustion in T cells. ? So early treatment would be beneficial.?

What size tumour is needed for TIL and does this lead to more of the lymphocytes being in the "exhasuted state"

Have studies been done using the circulating lymphocytes in OM rather than the tumour "exahausted " ones and are these able to be grown more easily?

Once again many thanks for giving us this wonderful oppourtunity.

 

Carpe diem

Lesley

 

 

 

Login or register to post replies.

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

Login or register to post replies.

margaretrogers57's picture
Replies 6
Last reply 11/21/2012 - 2:14am

We're in the anti-pd-1 study at moffitt.  So far Dr. weber has only seen a few ocular primaries and no reponders only stable disease.  Here's hoping we change that to responders.  Anyone responded long term on this drug with an ocular primary.  We start on Oct. 31.  Any comments welcome.  Margaret

Login or register to post replies.

ThatHomeschoolDad's picture
Replies 3
Last reply 10/12/2012 - 11:42pm

My latest scans show two dinky, stable liver spots, maybe even necrotic nothings.  IHP did the trick.  The few lung spots I have aren't changing either.   There is a new paraspinal spot in my back muscles, only about 1cm.  Yesterday, Sato said ipilimumab with sterotactic zapping could be "curative."  Now, I haven't heard that word at all up to this point, and I'm sure he didn't mean "Yay, you're not stage IV anymore."  However, I'm also sure that a giant brain like Sato would not drop "curative" lightly.  The thinking is that while I'm still comparativley young (chuckle) and healthy, and I tolerated the big hammer blow that was IHP, then it's time for the big hammer blow that is Ipi.

Google Yervoy side effectrs and you get a lot of posts on the cutaneous forums here.  Ipi-sh*ts seem to be a major concern, but as with any other side effects, anecdotes are all over the map.  

I could duck into a trial at Sloan first, but I seem to be on this track of trying big things first and having them work so far.  Has anyone been prescribed Entocort with Ipi?  Cutaneous posters seem to favor it over Imodium.

--Tom

Keep Rowing!

Login or register to post replies.

Pages