Radiation 5 zaptrons tomorrow
 

I can't believe I am going for radiation tomorrow. 5 zaps to L1. Hopefully will stop cancer in L1 without killing me. Side effect MAY be nausea, which MIGHT be MILD or MIGHT be horrible. Supposed to "just" have 5 exposures, unless I feel SICK in which case they'll reduce the dose and I'll have 10 zaps.

I know I should feel grateful for this option, but truthfully I am sad, upset, why do I have to have this fricken disease?, and how will I manage if I feel so sick? and so on. Plus the news of Yan Yan right after KDR and so many others (JML NedDenise, etc).
It's all a bit much for me right now.
Sigh...

Re: Radiation 5 zaptrons tomorrow
 

No doubt this has been a rough patch for us this fall/winter, bad news followed by worse news and all of the loss. It's really discouraging but those before us wouldn't want us to give up what they fought so hard to maintain. We've got to keep up the good fight, even if it seems too difficult.

I had five zaps to L2 in October, it sucked. Nausea wasn't the worst, it was the relentless diarrhea. Have plenty of Immodium on hand. I did concurrent radiation and chemo so I am sure the SEs were exacerbated by that. It was short lived though, about two weeks and I was feeling much better. I am sure you will too. You can do this. We'll cheer you along.

Re: Radiation 5 zaptrons tomorrow
 

Thanks for your reply, Tracy. Pooperia is my norm, after years of anti-her2 therapy I developed a type of colitis. No one has mentioned diarrhea (no doctor) but they've mentioned nausea. I hope I can tolerate the 5 days, and hope it works to shut down disease on L1.

Were you having pain and did that resolve after rads? It sounds like your combo is working and I'm glad for that. I have a girlfriend who does weekly navelbine and finds it so much easier on her system that way. Also on herceptin Perjeta.

I'm having a lot of Glute spasms plus sciatica pain unrelated to L1 but anything's possible. If it resolves after rads then I'll be glad but if not then I'll have to pursue cause and figure it out. I'm in PT plus I'm pretty active.
Too much stuff!!

Re: Radiation 5 zaptrons tomorrow
 

Flori, sometimes when the going gets ridiculously tough I find looking back on where one has been helps to put it all in perspective. Cancer sucks. NO ONE knows that more viscerally than you. Still, you have hung in the ring not being KO'd by a dirty foe, her2, that never fights fair and chases its opponents all around the ring. Unrelentingly. But you? You have managed to to go to school & earn a degree, be there for family milestones, assist others in their fights, and piss in cancer's face (hard to do without a male appendage, but i digress). You have LIVED beneath cancer's shadow and if it means anything, Flori, I am in awe of you. Feeling that this is insult to injury is very human. I will pray that you tolerate this newest affront to your body and righteous indignation well with no nausea or G.I irritation.

In your corner, I am,

Re: Radiation 5 zaptrons tomorrow
 

Laurel, your words mean a lot to me. Thank you. As it turns out, the machine wasn't working today AND my doc wants to recalculate plans to a lower dose, I brought my colon concerns to her attention and she wants to be more cautious since I already have colitis. Thanks again Tracey for sharing your side effects. You probably saved me some real trouble. Meantime, my rads onc doc is truly lovely and smart, I've known her since my original rads adventure 20 years ago, so I feel confident despite being annoyed at the delay.

Also held fast to my "I don't do hospital wear" motto and that tiny bit of keeping the "me" of me intact is good.

Gratitude to all of you lovely people. Xoxo

Re: Radiation 5 zaptrons tomorrow
 

Flori, when you have been living with cancer for so long, there are bound to be times it seems too much to bear. But we do go on, and stories like yours have been so helpful to many others. I wish you all good things and the strength to endure this new treatment.
Best wishes..... Pam

Re: Radiation 5 zaptrons tomorrow
 

I read through your sig and I think, damn. But I too am amazed by how you have been fighting HER2 for so long and are still winning. I'm sorry it hasn't gone away but look at how amazing you are. You can feel weak and low but count me amongst your fans and let me give you virtual hugs and tissues when you are feeling low.

Let's talk about your gut though, have you ever heard of such a thing as resistant starch? It is a type of carbohydrate that your body doesn't digest but the beneficial flora in your gut can digest it and it is totally good for you. What is even more crazy is that it costs pennies and yet docs don't know about it.

The thing is that it can totally help with diarrhea, something that many suffer with during chemo. Supplementing with a probiotic and probiotic foods is important as well since chemo messes with your microbiota in ways that are 1000 times worse than antibiotics.

I'll post more separately about resistant starch but here are a few easy options:

1 tsp potato starch mixed with cold water
--or--
1/2 cup potato or pasta salad (must be cold, however you like it)
-- or--
1/2 cold boiled potato


Potential beneficial effects of butyrate in intestinal and extraintestinal diseases
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070119/

Re: Radiation 5 zaptrons tomorrow
 

Pam and Laurel,
Thanks for the words of encouragement, it truly helps me. Agness, (A genius?) I use many supplements daily, esp the probiotics but am unfamiliar with the resistant starch. I'll look into your link.
Meantime, I'm supposed to start rads tomorrow. I am not a candidate for cyber or gamma or sbrt but good news is they can zap me in 5 days, it is pretty darn focused, will include some little spur zone (I can't remember anything the radiation onc tells me - I'm too anxious about Life these days, but it makes sense to me at the time). Am hoping that it goes smoothly tomorrow, meaning I don't have horrid nausea, or pooperia, or anything else weird. And with any luck (?) the sciatica pain and glute spasms that I'm having will go away. If it does not improve then at least I can move on from the L1 referral pain theory (not my gut feeling) and go get a cortisone shot in the low ass 5 & 6, not really up on my spinal anatomy tonight either :)

Re: Radiation 5 zaptrons tomorrow
 

My fingers are crossed for a really good outcome for you. It's difficult to relate, I was having significant pain including siatica and dragging/tripping my right toe and the HIP pain---OH MY but I had kyphoplasty before radiation. They had to stabilize my spine because I was in serious danger of collapsing L2 and doing permanent damage but it was an active (very) cancer lesion and doing kyphoplasty would severely limit how chemo would reach those cancer cells trapped in cement. Radiation was chosen to eliminate these cells and less to deal with the pain. Within two days of kyphoplasty, I was pain free and back to "normal" mobility. Radiation didn't provide additional relief because I was no longer in pain. I pray, pray, pray that radiation is kind to you. You've been through so much and deserve some relief. Fingers crossed that the SEs are mild for you. I will be thinking of you tomorrow. I hate radiation, it's such a lonely treatment---being alone with my brain is never a good thing for me.

Re: Radiation 5 zaptrons tomorrow
 

Good luck Flori! I hope those rads do the trick for you!

all the best
caya

Re: Radiation 5 zaptrons tomorrow
 

Gosh Tracy, glad modern medicine can do so much, what an ordeal. For me rads are to arrest El One - he's too active! IF this sciatic pain is from El One then it should resolve in a couple weeks. If not, then will get MR I to weigh in and look at El Quatro, El Cinco and the ass man below, can never recall his name. That's when Epi Dural will stab me in the back.

I can't believe I'm making jokes. Had zap one at 5:30. So far so good. Not counting anxiety. I read your post just before they called me. I'm totally with you on what a lonely treatment to is AND me too, don't need more alone time w my brain!!!! Sob sob sob.

Re: Radiation 5 zaptrons tomorrow
 

Dear SoCal -
Very glad you have one down and 4 to go now. Also glad you have some good experience pouring out here. My only experience with zappa rappa flappa is the original to breast area and my noggin. My spinal disc problem was not due to a new lesion so surgery was the only way to get me back on my feet.

I never heard of resistent starch either. Always some new info coming from some smart person here! If you try that, please let us know how it goes -- or doesn't ...

Re: Radiation 5 zaptrons tomorrow
 

I keep looking for the "like" button. Thanks Cathy!!

Re: Radiation 5 zaptrons tomorrow
 

Hi just a quick update. I'll finish rads later today. I'm managing pain with (3) advil twice a day, and (2) at bedtime. I don't think pain is worse, but certainly not better. I can't really go anywhere or do anything - even getting to rads is challenging - its the walking that kills me. So my life is on hold for now.

I saw Rads Onc yesterday, and she said that pain could get worse before it gets better if L1 is creating the sciatic pain, or if it inflames after rads it could create other pain. (Does the fun ever end?) She was glad I was taking advil and said to continue.

Does anyone know when will the post radiation pain occur?
I wish I would have thought of that question yesterday.
Eh.

Re: Radiation 5 zaptrons tomorrow
 

Hugs and support to all of you. Your strength and wisdom are amazing!

Re: Radiation 5 zaptrons tomorrow
 

Sorry to hear you are still having so much pain. I hope you are doing much better by now. How are the GI issues? You should start feeling better and better. I wish I knew what to tell you to expect but our situations, while similar, are vastly different.

I had to put life on hold the weeks following radiation because I was so ill but I was also on chemo at the same time. I hope your recovery is super quick and you get tons of relief from the radiation treatment. After the inflammation settles down, I hope you find the sciatica is relieved too. Keep us posted.

Re: Radiation 5 zaptrons tomorrow
 

How ya doing, Flori? Did the sciatica worsen or is it feeling improved? Pain sucks. Hoping it is lessening for you. You are a gutsy lady ( or broad, whichever floats your boat!), Flori!

Re: Radiation 5 zaptrons tomorrow
 

Re: Radiation 5 zaptrons tomorrow
 

My update is good news/bad news-ish...the good news is that the sciatic pain lessened on Sunday, and I actually took a walk with my dog. I'm not going to even mention all my thinking on the implications, as in, "did the pain improve because of rads, or just because of round the clock advil and enough time has passed?"

The bad news is I now have a low level of nausea and a high level of headache up to a migraine for several days now. Usually I can take Relpax for the migraine headache and in a couple hours I'm functional. Yesterday I was in the dark and on the couch ALL day and not in a good way. Today I was so determined and took my daughter to lunch for her birthday, then I came home and got back on the couch.

I'm supposed to have my infusion on Thursday, it's giving me a lot of anxiety so I'm going to see how I feel tomorrow at 4:00 (premed time) and if still no good then I'll cancel for now. Thanks for checking on me - I so appreciate the care. xo xo xo

Re: Radiation 5 zaptrons tomorrow
 

Yuck, Flori, yuck, yuck, YUCK! I am so glad the pain is abated and I hope it's the radiation that resolved it and not Advil. The nausea, I expected, I was sooo sick for the week after L2, but the migraine, you didn't need that on top of everything else. Rest, rest, rest. I had my infusion held a week, made me very nervous as I had just been restaged and it was only my second infusion but scans indicated that I had good response to the chemo anyway. Praying for you to feel better soon.