Brief update from jojo

[jojo]

Just letting you all know that I am back home now from the hospital. Brain tumor board meeting coming up this Thurs: then they should call me back with the next treatment plan.

When I saw my neurosurgeon yesterday, he said to me that he was as unsure as anybody could be: is it a benign or malignant lesion? Also as importantly, is the lesion growing in a totally different area?

He will need to go back to compare my brain MRI's from last year (to which I had a craniotomy & 24 radiation seeds implant done by the same neurosurgeon) and my most recent MRI's from last week. (The craniotomy from last year confirmed that the first lesion was cancerous. Hence, these seeds. Amagazingly, how did I get AMOTHER lesion in the same area?!?!! The million-dollar question, I guess!)

My onc tells me that it may be just necrosis (dead tissue), but let's just wait to hear from the tumor board first.

So, I will send another update as soon as I hear from them.

Meanwhile, steroids are just keeping me checked in condition, so I am happy to report there has been no heaaches since last Saturday -- just a little sore from some muscle loss, much thanks to the steroids.

I am pretty much calm about it, not so anxious as I had previously thought... just missing my beauty sleep! Steroids keep me awake, that's why, like a speed drug, ARGH! :-( And of course, lots of praying & meditation on my end. Just working very hard on focusing on things I should be doing right now, like getting a present for my mother's 65th birthday, and my husband's annual vacation coming up in 3 weeks. I am hoping that he doesn't have to spend in the hospital when it comes.

Oh BTW, my onc stoppped my Xeloda immediately. I had been on it, since Sept 2005. But I am still on weekly Herceptin.

Thanks again for all of your support. You give me strength that you cannot imagine how much good it does for me! God be blessed with you all...

Just twiddlin' my thumbs here!....

[Kim in CA]

Dear Jo Jo,

I'm so sorry you are having to deal with this again. Sometimes things in life just don't make any sense! I have been on pins and needles for you and Steph and just want you to know that I'm thinking of you and sending my love, prayers, and support.

Big hugs to you, Kim in CA

P.S. We should get together one of these days when you get over this latest hurdle, we're practically neighbors!

[jojo]

Kim,

Certainly, we can get together soon! Maybe in Sausalito or San Francisco?

We will definitely get to this, when the right time comes. At the moment, I can't plan anything ahead for the month of February, as I am still waiting to hear what the next treatment plan will be for my brain situation.

Looking forward to meeting you soon in the near future. :-)

And isn't it so nice to have beautiful sun out here?? Aaahhhh! (I was experiencing "cabin fever" during my recent hospital stay, which lasted from Fri late afternoon to Mon late afternoon.)

I think I'm gonna go take my dog out for a walk later, I'll just have to try to keep up with her. My legs still feel kinda wobbly with all this weird muscle loss from Decadron (a side effect of taking steroids).

Anyway, it is always good to hear from you, Kim. :-)

[Lisa]

I'm so glad to hear that your positive attitude is still there...that you're not so frightened. We'll all be waiting to see what the Tumor Board thinks.


Any idea why your onc took you off Xeloda? I've been on it for several weeks now and have no idea how it's working.

I'll be praying for necrosis!

Love and light,

Lisa

[Julie2]

Jojo,

I was very worried about you last week, I am happy now that you are doing so well. I am hoping and wishing that everything will turn out to be alright.

Julie

My onc says that Xeloda may have attributed the synergistic effect to the radiation seeds that may have started the swelling, but she tells me right away that she doesn't fully know. Remember that I had 24 seeds implanted last spring? The radioactivity was STILL firing off when we reached the end of last summer!

My rad onc also forewarned me that I may play with swelling for the next several months -- I think 18 months, post-surgery (from the seeds, that is).

I guess my onc is trying to work it out with my neurosurgeon about this brain thing.
...
We have been monitoring my response to Xeloda, by doing a physical exam on my left supraclavicular nodes, since Sept 2005. They have been pretty much stable, no shrinkage or increasage....

Oh, sorry the previous post was from me; I forgot to log in.

[StephN]

Assuming the previouis 2 posts were from JoJo.

I have been mulling over the idea of the radiation seeds, but forgot to mention it to the neuro and have put in a call to him about it. (EVerything came up so fast and I had lots of details I wanted answered.)

In my case they are talking re-Gamma after the surgery, if the path comes back with tumor positive. I would prefer only ONE procedure if the radiation seeds could be done with surgery. Probably not though - more work for the docs and helps pay for the expensive machines!

Was not aware that necrosis could cause such headaches and inflammation. Guess God has his hand on me that I have no such symptoms. I am MORE than thankful!

Yes, take your doggie out and have normal life as much as possible. Funny how we get used to this cancer stuff after so many years - gets mundane like talking about the laundry or some such!

[Barbara H.]

Jo Jo,
Glad to hear you are back home and have a plan. Keep us posted. We are thinking of you.
Barbara H.

[mamacze]

Dear Jo Jo,

I haven't posted for awhile, but I have been thinking of you. I saw Steph when I was in Seattle a few weeks ago and we both talked about how much you have slogged through with these brain mets. I wish your brain mets weren't so "in-your-face"...with the muscle wasting and lack of sleep you must be so sick of feeling sick. Please keep us updated on the outcome of the tumor board meeting. You are a warrior role model for the rest of us.
Love Kim (from CT)

[jojo]

Brain tumor board meeting yesterday:

Recommending a full - body PET scan.

Now waiting for date & time.

Thanks much for all your support!!! Please know that I draw on those good stuff for strength & calmness.

More details coming later.

[mamacze]

Jo Jo,
Thank you for the update; I have been thinking about you; wondering what the tumor board recommended. Please let us know when your PET scan is!
Love Kim from CT

[hope]

Hi JoJo, I am praying for you and hope everthing goes well the PET Scan and on the way to full recovery again. Hope

[Esther]

Jojo so sorry that you are faced with some uncertainty right now. I hope that you get some answers soon.

You have been such an inspiration to me on this board, from the first times that I logged on in 2004. Please update as soon as you receive new information!!

I'll be sending positive thoughts your way.

[al from Canada]

Dear JoJo,

Again, thinking of you and wishing for the best.
Take care,
Al

[Lolly]

Dear Jojo, thinking of you and sending my thoughts and prayers your way. Please let us know when your PET is. In the meantime, are you able to watch the Olympics and enjoy the excitement? Hope so, it's good medicine to be able to take your mind off of your troubles for a while...Hugs to you.

<3 Lolly