Met with Ocular Melanoma Oncologist
 

It took a while to get in to see him, but had my appointment yesterday in Philadelphia. There was good and bad.....The bad is that he revised my prognosis to 70% chance of recurrence (had been told 50% by the genetics testing). Good news is that my most recent liver mri and lung ct were clear. I had gone, hoping to be offered an adjuvant treatment, and he did that. Waiting for insurance company approval, some baseline testing of heart, some labs, and getting a local oncologist on board. Then, perhaps in a month, I should be able to start. Right now, I'm a bit demoralized again, but am trying to hope that the adjuvant will give me the 20% advantage for non recurrence that many in the study achieved. That puts me back to 50%. My sis says to forget the numbers.....they are just numbers. I am trying, and still really appreciating prayers.



















































































































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Re: Met with Ocular Melanoma Oncologist
 

Yes, the numbers can make you discouraged. But you are more than a number! We hope that you are in the lucky 50% and that your new treatment plan is approved asap.

Sending healing prayers

Re: Met with Ocular Melanoma Oncologist
 

Barb,
Numbers suck almost as much as cancer!
Let's make a deal...I won't listen to my numbers,, if you won't listen to yours. We're both tough birds...and we can defy those bad numbers! :)

Thinking of you...sending prayers...and a GIANT homegrown Pennsylvania hug!
Denise

Re: Met with Ocular Melanoma Oncologist
 

Yes, forget the numbers!

Stephen Jay Gould had a famous quote that 'the median is not the message' http://en.wikipedia.org/wiki/Stephen_Jay_Gould Statistics are just statistics. We can all learn from him to outlive the 'median' ...

"The Lord bless you and keep you..."
"May the road rise to meet you. May the wind be always at your back..."

Re: Met with Ocular Melanoma Oncologist
 

Barb: my sister in law was diagnosed with eye cancer and her Canadian oncologist in Montreal was terrible! She did her own research (her husband did it actually) and found that in England there are excellent doctors, particularly one in Liverpool. She phoned his office there. He demanded she send all scan reports to him immediately. He personally phoned her back and told her to come to England asap. She went. He operated. Canada paid for it, inc a part of her stay there. She is great now.

Re: Met with Ocular Melanoma Oncologist
 

Re: Met with Ocular Melanoma Oncologist
 

Prayers going your way dear Barb and hugs too. What Nora mentions sounds great. Lots of Love.

Paty

Re: Met with Ocular Melanoma Oncologist
 

Hi Barb
Just wanted to add to what Norkdo has said. My friends son is under treatment at Liverpool for an ocular tumour. I can only describe his care as excellent! I believe they have private patients so accessing the service should be easy if your insurance will pay. I live some way from Liverpool but if you decided to come here I would be happy to meet you there.
Ellie

Re: Met with Ocular Melanoma Oncologist
 

Thanks so much for your concern, girls. I haven't posted much, because nothing much is happening, while I wait for my insurance to agree to pay for the oral chemo. I will have liver scans every three months and lung CTs every six. If I am approved for the Sutent, it is a six months course of a pill a day, with labs each two weeks, check of heart every two months and check of thyroid periodically too. I have the avastin shot in the eye when I go back to the ocular oncologists, each four months. I may also need another laser procedure on the retina to minimize radiation damage. No local oncologist yet, as I'm waiting for the Philly oncologist to send his notes. It will be necessary to have the local guy on board if and when I start the Sutent. I got new lenses for my glasses about two weeks ago and that helped my failing vision a lot. At some point , it won't be correctible, but I'm glad for how I'm seeing now. State of mind is "iffy"....sometimes I'm hopeful and sometimes it feels like I'm just waiting for the other shoe to drop.....probably part of this miserable process. I so appreciate your kindness, ladies and would still appreciate your prayers.

Barb A.

Re: Met with Ocular Melanoma Oncologist
 

Barb...
Thanks for the update and the explanation. :)
You've been in my prayers anyway dear friend...but now I have a better idea what exactly to pray for when I'm lifting you up.

I don't mean to be insensitive, or nosey...and feel free not to respond to this next question...but are the docs saying that eventually you will be blind in that eye...even with treatment? Or is that the 'iffy' part? Having that hang out there in the wind...well, no wonder you're state of mind goes up and down!

So much to deal with! And still hanging tough! You rock!
Sending love across our great state!!
Denise

Re: Met with Ocular Melanoma Oncologist
 

hey Barb, not sure about American health system, but the Canadian one said "no we will not pay! you haven't filled in all the papers, you haven't waited for...whatever..." and she went anyway, and went to the health offices or whatever and they paid! Just saying that if you can contact the Liverpool doctor my sister in law found on the net and email him the reports...type em out or whatever, as Ellie said, this guy (and apparently there are tons like him all over England, who are used to the foot dragging and lollygagging of Canadian and American systems and are clever at writing reports to those who pay for our treatment here on this continent) you'd be a heck of a lot healthier while waiting to find out about getting reimbursed back home.

Re: Met with Ocular Melanoma Oncologist
 

I don't mind the questions at all, Denise. The docs say that I will lose central vision in my treated eye at about 18 months from the treatment date, so perhaps another year. I've completely accepted that eventuality. It is the possibility of mets, which go to the liver or lungs that makes me the greatest misery. At the time of treatment, there was a complete discussion about whether to do the plaque radiotherapy or remove my eye, so I accepted early on that I would not keep vision in that eye. There are also conditions which can arise after so much radiation that would still mean removing my eye. Not my wish, but still not the worst....it's the mets that concern me. You are a sweetheart for writing and I appreciate you a huge bunch! Hope things are improving for you and the steroid weaning is going well. Hugs to you, Denise.

Barb A.

Re: Met with Ocular Melanoma Oncologist
 

what about proton treatment? They told my sister in law she would lose her eye but this other treatment, done in Liverpool spared it.

Re: Met with Ocular Melanoma Oncologist
 

My docs are among the top in the United States, and they never mentioned proton treatment, although I know it is done in some places here in the U.S. The plaque (brachytherapy) was the choice, a dose of radioactivity delivered over a period of seven days. It is a disk of radioactive material, stitched over the base of the tumor, on the outside of the eyeball. It is then covered by bandage and a lead shield, and then removed. It is said that the treatment is 97% effective in killing the tumor, over a period of time (about two years). Measurements are taken at each check up to be sure the tumor is not growing. The danger is in the prospects of mets. I hope your sister in law continues to do well.

Barb A.

Re: Met with Ocular Melanoma Oncologist
 

Ammebarb,
I think of you often and send vibes for healing strength and peace.
Keep us updated as to when / what treatment is and how you are doing.
Gentle hugs dear one! NO, YOU are not a statistic!!

XOXO Marcia

Re: Met with Ocular Melanoma Oncologist
 

Dear Barb, best of luck with the new treatment. And I commend you, and all of our Her2 family, for going the extra mile in finding the best treatments. And for sharing our adventures and misadventures here o n the board. I continue to learn every day new things about my health. I have also learned over the years that the numbers change quite rapidly as new treatments are discovered. When I was first diagnosed in 2005, triple positive breast cancer was 'very rare'(1st oncolosist)invasive lobular is NEVER her2+(ha!), and my odds were grim. Those numbers have done a complete 360!!! Every day we stack the odds in our favor!!! XXOO

Re: Met with Ocular Melanoma Oncologist
 

Sending prayers your way. Hopefully you can see the same doctor Nora's sister visited in England. Sounds great!!

Re: Met with Ocular Melanoma Oncologist
 

Finally received the approval for adjuvant oral chemo, Sutent! It's arriving on Thursday. Hope to begin to take it sometime soon. It's an initial six month course of a pill a day and then one can opt to do another six months, if mets havent' appeared in the meantime. Hoping for maximum good effect and few side effects. Thanks for all you love and support for a sister with a different cancer!

Barb A.

Re: Met with Ocular Melanoma Oncologist
 

That is great news Barb! I am so glad you can start therapy now. You know, percentages really mean nothing. Either you get mets or you don't. I know of several people who had over 90% risk of recurrence and/or mets (lungcancer, braincancer, breastcancer) who never recurred. We all know that some people even survive mets. You could be in that group. Wouldn't it be nice if we knew in advance? Then we wouldn't worry so much. In a way I think the uncertainty is harder to deal with than the certainty of having mets.

A friend of mine once said: as long as there's no evidence of mets, I will assume that I am not going to get them. That way my time won't be spent fretting over something that may never happen. I thought it was very wise, although I'm not at all sure that I would be able to think that way.

For now, you are hitting those cancercells hard and hopefully they will know that you have this whole army of Her2 supporters fighting them with you. We are a formidable adversary as a group. They'd better run!

Sending hugs and healing vibes, all the way from Europe.

Love

Jacqueline

Re: Met with Ocular Melanoma Oncologist
 

Barb!
That's great news! Thanks for updating! You're in my prayers everyday anyway...but I'll add the name 'Sutent' in there now too!

sending love and a big hug...
Denise