More (less) options for brain mets for me...

[pattyz]

Todays appt results:
iMRT is not feasible in this situation. The only possible tx for my 10 new(er) brain mets is now WBR in an extended schedule a minimum of 15 sessions or the chemo combination I'm now on of Temodar/Xeloda.

The chance of response to the WBR is average, but the risks of permanent damage to brain is quite a bit higher given that I've had so much prior rads to brain. It could leave me not recognizing anyone, or with paralysis and many inbetween things...

So, unless I become more symptomatic (more than the 24/7 dizziness), I will continue with a second course of chemo. At the end of Sept. I'll have another MRI to see if there has been any change. At that point, depending on the results of scan, I will either stay on chemo, risk WBR, or ...not. Let progression continue until I succumb.

When asked, this doc did not forsee my end in a 'locked in syndrome', that I would be aware of atleast. But I still hate that since it could be protracted. And I really don't want to linger endlessly either.

I can wait on hospice until my symptoms get worse either on their own or as a result of WBR.

My hope (ofcourse!) is that my lesions will respond to the Temoda/Xeloda and that I can share that as another option for those of us with brain mets, since we have so few.

If I do go with the WBR at some point, I will do my best to have it in conjunction with RSR-13, but honestly I forgot to ask if it's available yet outside of trials.

Thanks to all of you who've sent good thoughts and prayers my way. ALWAYS appreciated.
hugs,
pattyz xoxox

[*_Celina_*]

Patty,
Sounds like a good plan. RSR-13 is, I believe, still in trials..but I don't suspect it will be difficult to get on this trial.
I will continue to pray that your chemo combination works. Remember, Patty, that there are women who I know of who have had brain mets that have stopped growing/spreading for long periods of time. Stay positive...you're still in the game of life and I'll be thinking of you!!

[Barbara H.]

Thanks for posting, Patty. You continue to be in my thoughts and I am hoping along with you that the chemo does its job. You are a role model for us all.
Best wishes,
Barbara H.

[imported_Joe]

Patty,

Have you considered the Dana-Farber Trials of Lapatinib for brain mets?

Lapatinib is suspected of crossing the BB barrier.

Regards
Joe

[Lolly]

Patty, I'll be sending positive energy to you as you weigh your options, and praying the chemo does it's job.

<3,
Lolly

[pattyz]

Joe,
Is this a dbl blind where I might or might not get the Lapatinib?
(I couldn't determine the answers to my questions in the search I did)

Would I have to travel?

Would my medicaid/medicare pay for it?

If I was not assured of recieving the drug, then no.

I can't afford to pay myself.

I'm not up to the traveling, nor could I afford the travel.

thanks,
pattyz

[Lisa]

Patty,

I know you've always been opposed to WBR. And, who knows, maybe that's your intuition talking. But I so wish you'd get another opinion about the possible brain damage. Or perhaps Christine could ask her doc's opinion. We don't want to lose you, and I think talk of Hospice is premature.

When I had my WBR, the two rad oncs (one of whom invented CyberKnife), said that in the future if need be, I could have as many CyberKnife treatments as I needed.

Remind me about your brain rads to date.

Where do you live? Just curious about possible second ops.

Love and light,

Lisa

[StephN]

Dr. Winer (got this spelling from Joe a while back) at Dana Farber is the lead onc on the Lapatnib trial.

Celina's sister had to travel to Boston for the initial analysis and entry into the trial. They want to observe the first few treatments and see how the patient is faring with side effects. Seems the trial covered a lot of the costs.

After that she took it on her own at home in Canada.

Give a call and at least speak with someone - if not Dr. Winer, a high up assistant. It is worth a shot.

[pattyz]

It is Lisa, my gut just says it will be a worse case scenario for a fact if I do the WBR. I'm less afraid of dying than I am of the consequences of a WBR schedule.......

I had three linear accelerator SRS procedures 1. treated two tumors 1.5 and 6mm 2. treated four tumors under 1cm, including one in pons. 3. treated four tumors. again under 1cm, between 7-9mm.

Then I had two CyberKnife tx's two days apart in which 6 tumors were treated in my cerebellum.

The other tumors were scattered throughout my cerebrum/frontal/temporal/occipital/parietal, and pons/brainstem.

I live in Minnesota.

Have talked to two rad oncs and one neurosurgeon who all said the same thing, Lisa...... I'm tired of going through the whole deal.

Thank you for your sweet concern. Really.
xoxoxhugs,
patty

[pattyz]

Oh Steph. I don't feel up to going through that whole process, I really don't. But I will talk to my onc about it next week. And thank you for caring enough to push :o)
hugs,
xoxoxpatty

[Barbara H.]

Patty, I think you should look into the Dana Farber trial. My oncologist also told me about it and said I could take part in it if brain mets return. I am being treated at the Dana Farber and my oncologist is Dr. Leroy Parker. Some members have been able to get free flights for the vaccine trial in Washington. I would call Dana Farber because a call can't hurt and maybe you are the one for whom it would work, just like in the early cases of herceptin.
I would like to see something work for you. You are so generous with your thoughts for others.
Best wishes,
Barbara Holz

[StephN]

Dear Patty -
I can understand your feeling weary and know that you have been doing a lot of research and consults on your current situation.

Like you say, maybe you need to give yourself a minute and not change horses in midstream. You have decided on the chemos and they have only had a little chance to work.

But, the results coming out on Lapatinib give some pause to reflect on this as a possiblity.

Your life is in your hands, and what you do is really between you and your maker.

You have all our support and prayers.

[pattyz]

Ok, Barb. I will. Not today :o) but I will talk to my onc next week.
sending one very big hug,
patty xoxox

[ptbrave2]

Steph,
Yes, that's it, too. I actually do have serious hope about this chemo combo because even in the small study done, it showed very good response...
a larger group stable but a smaller number even showing complete response.

Steph. Thank you for your understanding and encouragement and support.

I will discuss with my onc the Lapatinib trial.
love with hugs,
patty

[pattyz]

phooey. gotta be more careful with this id thingie. puter 'remember' all my old ids........ sorry

pattyz.........not not not ptbrave anymore.

[*_Celina_*]

Patty, the trial at Dana Farber is an open arm trial...you WILL receive the drug. E-mail me if you need any information about the specifics of the trial.
Celina