Urgent! Brain Met, meeting radiation onc today!

[hart2hart]

Jane -

Pete and I just wanted to let you know we were thinking of you today!

Lots of hugs and Happy Mothers Day! Enjoy the day, you deserve it!




Julie and Pete
Stamford, CT

[Sharona]

Jane,
Sounds like we are on very similar paths! I have a few blind spots and loss of peripheral vision. Have also had a couple of seizures. The bad thing is that they will not let me drive. Some of that may be because of brain damage from the craniotomy. The treatment you will receive is very similar to mine. Stay positive and remember that I have had no new growth for 17 months now!
The mapping and actual treatment should be a breeze compared o what you have been through.
Keep us posted.
Hugs!
Sharon

[janeandrea]

Julie and Pete, thanks so much for the good wishes-I send them right back to you!

Sharon, I'm not allowed to drive either, because of the dangers of seizure. Doc said I can drive 6-8 weeks after the procedure, if all goes well.

I live alone, so not being able to drive really sucks. But that is least of the suckiness of all of this, right?

Jane

[Maia]

Jane, I'm so glad the lesion is treatable with SBRT, and that you caught it early! My friend had a jump in CEA while having lung lesions (first days November 2012); a doctor she saw in the States (she's in Canada) told her to get her local doctors to perform a full body PET scan (hint hint)... nobody seemed worried, she never got her doctors to do that. First two weeks of December 2012, she had symptoms, during *two weeks*, before any doctor assessed her -they did it, when she ended up in the ER: the tumor was already bleeding and they performed an emergency craneotomy. It was successful during remarkable long time (one year before recurrence, just this past February!). She had even the chance to address, totally, the lung lesions in April 2013 (brain clear, lungs lesions responding to low dose Folfiri), and go for a protocol to *prevent* any recurrence, brain or anywhere. Sadly, that was a lost opportunity but my point is... it has not to be the same for you!

BTW, I attribute her long time before brain mets recurrence to luck, probably, but also to the fact that she took celecoxib (Celebrex, an anti arthritic medication) as radiosensitizer -to make the bad cells, only the bad ones, more receptive to radiation (edited to add: because she had IMRT -Intensity-modulated radiation therapy-, local, only to the place where the tumour was, after surgery). It has anticancer effects too. If you feel up to it, you can read about it here; you have there articles you may want to show your doctors, so they may give you permission to take it (the rad onc gave my friend the ok for that, probably in the frame of 'it can't hurt...'-kind of thinking).
Also, the steroids (dexamethasone) are nasty. In short time, at high doses, they can provoke loss of muscle, diabetes, bone loss. You *have* to take dexamethasone, of course, but if you can help to get down inflammation for any other ways, the better. The Celebrex may help you with that and also boswellia.
Boswellia may look like a silly supplement (at any natural store) but is so potent that it's compared to dexamethasone ("could potentially be steroid-sparing for patients receiving brain irradiation" Boswellia serrata acts on cerebral edema in patients irradiated for brain tumors: a prospective, randomized, placebo-controlled, double-blind pilot trial (2011). You can print that for your doctor.
I sincerely feel that this brain met episode won't keep you from doing that trip and enjoy more time : )

[janeandrea]

Maia, thanks so much for all your generosity in info and support! I was on Celebrex a few years ago, but I can't remember now for what (but it was prescribed by my onc). It made me a little sick and didn't really do anything. I've been on dexamethasone several times before; it was always in my pre-chemo drugs, and just recently had it during a 2 week hospital stay after I reacted poorly to irinotecan.

I've thought about asking about a full body scan, but I don't have any symptoms anywhere else. And I guess bone mets are the only things still to look for; my regular scans always include full pelvis and chest, and of course now will include the brain, so I've mostly been covered. Besides, since I already have multiple organs involved (lungs, kidney, brain), the treatment course wouldn't be any different, would just treat pain if I had any. But I'll still think about asking.

Again, thanks so much!!!

Jane

[Maia]

Oh, the 'hint hint' is that *that* should of have been a clue for my friend's local doctors -not for you! I didn't mean you need a full body PET scan -I'm sure they are keeping an eye on you (all 'you') from now on
You're fine in this brain front, I think : )

[vilca11]

Hi Jane, just wanted to say what a strong brave wonderful person you are... Thinking of you and wishing the best outcomes for SRS.... I have a feeling it all will be all right and you'll have much more time than you think. My feelings proved to be right almost always.
Big Hug and warmest thoughts, Vilca

[janeandrea]

Hi Jane, just wanted to say what a strong brave wonderful person you are... Thinking of you and wishing the best outcomes for SRS.... I have a feeling it all will be all right and you'll have much more time than you think. My feelings proved to be right almost always.
Big Hug and warmest thoughts, Vilca

Thanks, Vilca!

[Sharona]

Jane,
Just checking to see how things are going. You've been in my thoughts and prayers and will continue to be. I know it will be a while before the doctors will able to see results ( waiting is the hardest part!)
Hugs!
Sharon

[janeandrea]

Jane,
Just checking to see how things are going. You've been in my thoughts and prayers and will continue to be. I know it will be a while before the doctors will able to see results ( waiting is the hardest part!)
Hugs!
Sharon

Hi Sharon -

Thanks for checking in on me. Yesterday I had another MRI using thinner slices near the tumor. Tomorrow morning I go in for CT and Simulation in the Radiation Oncology dept. They are supposed to be able to tell me after that tomorrow when I will start the actual series of treatments.

Scary time. I've been going over some more paperwork (beneficiary stuff) for my family, as my sister is my executor and I want to make things as easy on her/them as possible.

Until I know my treatment schedule, I can't really finish planning the Chicago trip. I am getting anxious, actually, because it seems to me my blind spots are getting bigger.

Peace,
Jane

[Maia]

Hang in there, Jane... you may have the 3 sessions next week and that is. Vision may get back to normal right after that ((hugs))
Glad you're almost ready to get it done!

[Maia]

Bumping this up, hoping to hear from ((Jane))!

[hart2hart]

Jane -

Pete and I are thinking aboutcha (often) and we would LOVE
to hear from you.

Bumping up Maia's bump!



Julie H
Samford, CT

[janeandrea]

Hi everyone - so sorry for the disappearing act!

I did indeed have sessions, the 28th, 29th, 30th. That mask is a bitch! I am doing pretty well, mostly just sleepy. Also my hands are super shaky from the steroids I've been on for almost a month (just starting stepdown mode now), so typing is difficult.

More when I can type!

Peace,
Jane

[Maia]

Weeeee!! So happy to hear from you!
Do not worry and just rest, I think we can wait for you now that we hear a bit
Wean off from that bitch dexa!
Keep strong and be ready for travel (((Jane)))
love,
m.