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-   -   Caryn next step - might be option for others (https://her2support.org/vbulletin/showthread.php?t=35694)

eric 11-21-2008 10:50 PM

Thank you all for your thoughts and wishes. A special thank you to Joan who I hope knows how much her thoughts and consideration have recently meant.
Now that I've had a few days to process my perspective has changed slightly. While I'm very sad that Caryn has to potentially face losing her hair again (chrisy, you put it perfectly) and feeling like junk, I'm thankful for the little time off that she's had and the fact that she didn't have to suffer through treatment during our son's Bar Mitzvah celebration. I'm also going to raise the question about RFA for the nodes in addition to a systematic treatment. Additionally, I'm looking through trials that might be worth considering (in NJ this time, so they won't be as physically and emotionally taxing on Caryn).

Justwannabe, I'm glad to hear that you're in a position to take advantage of the Sir Spheres. It wasn't an easy procedure for Caryn but seems to be kicking the butt of this pesky tumor. I do believe that surgeon played a big role in the success and I hope and believe that you'll experience that same success.

Love to all, Eric

mamacze 11-23-2008 09:25 PM

I am so glad I logged in tonight!
 
It just warms my heart to hear how Caryn is still coming out ahead in her journey and how wonderful that she attended your son's Bar Mitzvah feeling well. How fortunate she has you helping her with the research especially when she is feeling under the weather. Warm warm wishes and cyber hugs to you both, this last round of chemo may be just the one-two punch those tiny tumors need - thank you so much for the updates Eric!
Kim from CT

Rich66 12-12-2008 03:31 PM

Any further thoughts on the Sir spheres experience?

JustwannaBE 12-12-2008 07:34 PM

Exactly a week ago, I went thru the maa mapping process and it wasn't too terrible. It was done as an outpatient, and they coiled off 12 blood vessels and that process took 2 1/2 hours. All together from the time I checked in and checked out, it took approx 7 1/2 hours. I was not sedated totally (forgot what they called it), but was awake as they tell you to take deep breaths during the procedure. I was given Versed, Phentenal & delaudid. I started getting really sick feeling when I was coming down, so they had to give me some zofran in my iv when I was put in recovery and they kept me there for 2 hours. The next 2 days I felt awful, like I had the flu and chemo at the same time, I took my vicodin and just layed around, and on the 3rd day, I started feeling better, and on the 4th day even better. I am a candidate for sir-spheres and will be having the procedure done on my right side next week, and I can't wait !! Then we will see what happens, and do my left side. I have learned, one step at a time.
Eric - how is Caryn doing ?

eric 12-13-2008 06:22 AM

Kim, reading your post warmed my heart...thanks

Rich, although one set of dr's was against the procedure I'm glad we did it. It really seems to be destroying a very stubborn tumor.

JustwannaBe- it took a while but Caryn recovered nicely from the procedure. The only real side effect that she dealt with for a while was fatigue and that's because the process keeps working for up to about 3 months. The fatigue wasn't bad, just there. Hope you find it even easier.

Rich66 12-13-2008 11:21 AM

On what grounds were they against it?
Also..any mention of intra-arterial chemo to the liver? I wonder if there is any conflict in getting IA chemo followed by spheres or the reverse order.

eric 12-13-2008 09:11 PM

A dr at Sloan was against it because of his belief to attack it systemically. He felt the studies confirming survival benefits of RFA were flawed and misleading. I, obviously, don't agree.
There was no discussion of intracranial chemo. I'm not familiar with it. Have you seen a lot of positive press on it?

Rich66 12-14-2008 02:42 AM

It's intra-arterial delivery of chemo, supposedly preferred by MD Anderson.
http://www.mdanderson.org/department...od=displayfull


Regarding spheres, there does seem to be a double-talk amongst medical oncologists of the need to "reduce tumor burden" combined with the neglect of directed therapies that, at least intuitively, could help in that regard. I have, however, encountered interventional radiologists who seem to be open to combining the approaches. In other words, I don't get the impression that it has to be a local vs systemic equation.

eric 12-14-2008 07:38 AM

Interesting read from MD Anderson, thank you.

Fortunately, Caryn's Onc is one open to a combined approach. My feeling is the tumor in her liver was getting increasingly large and burdensome. By eliminating or minimizing that burden we expand treatment options and reduce the current urgency. At this time, I'm glad that we made the decision to move forward with it and I'm thankful to our local Onc and the very creative Radiologist.

Rich66 12-27-2008 01:57 PM

Is it your understanding that sir spheres is a one time treatment, albeit one lobe at a time? How is Caryn doing now?

eric 12-27-2008 07:42 PM

She's doing well recovering form the spheres and meets with the Radiologist early January. I'll have a better sense after that and will certainly let you know.


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