Starting Chemo March 2015

Jackbirdie

Shaz- the widening of blood vessels might be why they say triggering migraines- but migraines are not specifically listed....good news.

Water..who knew? Is that in plastic bottles only? Morning crisis has been re-rated to defcon 5 based on ksusan's post. How to keep it in perspective?

molly1976

Aaaaand I have a urinary tract infection. Can't believe I made it through chemo okay and am getting one NOW, the first time since college. They put me on Cipro which the doc said interferes with trazodone anyway, so I guess this is as good a time as any to quit it! We'll see if I sleep tonight.

Trvler

Molly: I had one, too. Did you read my post about why you get them on chemo? I haven't had one in 30 years. Took Cipro and it knocked it out in 12 hours, at least I felt better. Be careful with your working out. The side effect was torn ligaments or something like that.

Study like that sounds like it has govt written all over it.

Port is officially out.

Jackbirdie

Allison! Out???

YAYYYYY!!!!!

🎉🎉🎉💃🏿💃🏿💃🏿 oops no dancing...

molly1976

Allison, congrats on deportation! And that 12 hrs is good to hear because my doctor said 2 days to feel better and that sounds like an eternity right now.

Trvler

Well, the only symptom I had was a fever. No discomfort. I was quite surprised when they said UTI.

shaz101

CONGRATULATIONS Alli on getting your port out.

And thanks to the rest of you for spinning my head around with info. Jeez I've only just woke up!

...I'm off to console myself with caffeine ☺

shaz101

who the hell does this??? And how did they work it out?

Drinking grapefruit juice with Tamoxifen can raise your risk of side effects.

Trvler

Grapefruit is forbidden on a lot of meds for some reason. I take something called cochicine and I can't eat it while I am on that. The doctor said lemons, ok, but no grapefruit. I forget why.

shaz101

Thanks Alli, I'll go and drink my coffee now.

wpmoon

Overall survivals were 96% and 94%, respectively (p = 0.08). Results of the B-14 study suggest that continuation of therapy beyond 5 years does not provide additional benefit.

Then WHY the hell am I supposed to take it for 10?! I have a loooooong list of questions for my MO when I see him tomorrow.

Allison - YAY for deportation!

ksusan

Yay, Allison!

SpecialK

wpmoon - here is the specific info that discusses the benefits of 10 years of Tamoxifen over 5 years. NSABP B-14 is older data, I believe.

http://www.asco.org/press-center/asco-guideline-up...

http://www.onclive.com/web-exclusives/ASCO-Guideli...

http://jco.ascopubs.org/content/early/2014/05/20/J...

http://www.breastcancer.org/research-news/20130604

wpmoon

Thanks, SpecialK. I figured you'd come around with good resources. Trying hard not to fall down the rabbit hole of Google.

eheinrich

I've been on Tamox since mid-June. Is it unheard of to start getting side-effects this far out from starting taking it?

neverthought

Hello everyone. I've been lurking and reading and celebrating and praying with you but now have a dumb question. How to shave the underarms? Using a razor is just not working too well for me - area is not flat enough for klutz like me not to cut myself.

Other than that, seems like chemo brain is happening as much as I want to deny it. If cancer wasn't enough to humble me, the forgetfulness sure is.

Still putting off a head MRI, though I know I should have it. I'm tired of appts and tests and not sure I want to know if I have something going on up there. Sometimes I get scared enough at night/on the weekend to call my doctor and ask them to schedule it but then change my mind the next day.

Actually got a hair cut to remove all the stray hairs that never fell out in the first place. Not too scary looking but not enough to brush or comb yet either. Amazed at how many people tell me their cancer stories now that they see my lack of hair.

Tamoxifen not an option for - - - but don't envy everyone taking it. I think I'd be sick of having to take another medication. Regular menopause did cause increased migraines for the first couple of years or so. But MO said it is better to have kind of cancer that can be treated with it as far as survival goes. with triple neg have already done everything can do.

Thinking of everyone always and more grateful than I can say.

SpecialK

eheinrich - SE from hormonal therapy can show up pretty much anytime, unfortunately - but I feel like the longer you go without any the less likely you will have any, or at least any intense ones. With Tamoxifen it seems that the more long term SE is uterine thickening, which might take a bit to build up.

wpmoon - try not to think too much about 10 years of Tamoxifen right now, focus on the shorter term. I have learned that, at least for me, taking this in bite-sized pieces is an easier approach. I know that sometimes that is hard though!

never - can you clarify your post regarding Tamoxifen not an option for +++, I am not sure what you meant.

neverthought

Talk about chemo brain Special! I meant - - - (triple negative). Maybe it's time to call it a day.

Wish I had someone to monitor me at work so I quit embarrassing myself.

SpecialK

never - no worries, I was just confused for a sec. The chemo fog usually lifts the further out you get PFC. I know that is not helpful right now, but fingers crossed that things get better ASAP.

Edited to add - I am 4 years PFC and the other day I tried to put a pair of reading glasses on and I was already wearing a pair...

slothabouttown

oops,what I meant was that the PILL isn't supposed to touch pregnant women. I didn't mean to start a panic on the boards! I'm so sorry everyone! I read my post again I can see that I wrote that before I'd had a full serving of coffee.

Lovemylab

Taxol #11 of 12 today! Yea only one left. Of course herceptin every 3 weeks til 6/16. But hopefully that won't be too bad. My biggest priority is to work with therapist weekly on chemo brain so I can someday return to work. I guess I will have to do better on those memory tests before they release me to go back. On a good note I love fall so being off til mid-oct has some positives. Maybe I'll never learn the months of the year backwards!!! ( I keep getting stuck on March ).

shaz101

my body is aching something terrible. The hip and knee joints are the worst. Is this from radiation or chemo?

Jackbirdie

my best guess is chemo. It will get better. You might also have unknowingly upped your activity (gardening perhaps?) and using muscles not used for awhile. I would soak in the tub and try to do some stretches in the mornings

Be gentle with your body, and listen to it, as you are. Remember you are 80 years old right now, but luckily, counting backwards as you heal. 💞

SueH58

Whitney - I, too, need from 5-10 years AI. I'm just hanging on to see what the research brings over the course of the next 5 years. There's such little historical research that, in my opinion, they are saying 5-10 years, awaiting research over the next 5 years or so. Just my thoughts.

Jackbirdie

Tutti getting what she wants

Sue- above is Tutti's take on it

Lovemylab

Aunti Maureen thinks Tutti is cute as well. Have you tried the harness for outside time?

Jackbirdie

Actually, there is an abundance of research on Tamoxifen. It is not a new drug.

The AI class of medications, only available, unfortunately, to post menopausal women, is a newer drug and there have not been trials published yet on ten years of those.

My MO said he is "assuming" that since Tamox has been proven more effective over 10 years, and that AIs have been proven to have an edge over Tamox re recurrence, he will put all patients of his who can otherwise tolerate on ten years of one, the other, or in my case, a combination. Probably 2-3 years Tamox, 7-8 an AI, probably Femara.

Jackbirdie

Auntie Maureen- thanks for the reminder. Moving has had me so distracted! It's on the list, though!

SpecialK

It is important to note the difference between Taxoxifen and aromatase inhibitors and the idea of 5 or 10 years of use. Tamoxifen is a much older drug and studies of its use longer term have been done, but this is not true yet for AI drugs. Some oncs will leave patients on AI's longer than 5 years if they are tolerating them without deleterious effects, even though the data does not yet support this. At my last appointment with my MO he indicated he would use the Breast Cancer Index test next year (I will be at 5 years in June) to help him determine whether my risk of recurrence warrants continuing on Femara. I am already getting Prolia injections twice a year to counteract the bone damage from hormonal therapy, so he wants to be sure it is worth continuing. The BCI test is one part of his consideration, although I am not sure how being node positive impacts the reliability of this test.

http://www.biotheranostics.com/patients/bci/

shaz101

thanks Katy. I think you may be right. A combination of chemo and activity. I did cut back the hydrangea on Sunday. I don't want to be 80 right now although I am hoping to be there one day 😊. I've taken some endone and they have just started working.

My radiation burn is quite bad now. I even shocked the nurse when she saw it. I'm now bound up and larhered in bepanthen. It doesn't hurt much though. I think i m not feeling it because my body is aching too much.