Starting Chemo September 2015; join us!
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My RO is sending me to a LT for monitoring since rads raises the risk.
Scotland, I would like to join in the whine today. I made it out of bed for one hour before the dizziness took over. Enough already.
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Sorry to hear Amy. Hopefully something works out for you. X
Not having any SEs on Taxotere dose #2 of 4 either. Just taste buds gone awry as usual.
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I'm amazed and totally jealous that anyone gets through this with no side effects! But, my friend did... She had nothing but fatigue from ACT. I, on the other hand, have felt like nothing but crap since I started Taxol. I'm debating which is worse - the dizzy/queasy from the Fentanyl or the severe leg pain. Do I put on another patch tonight or no? Amazingly, my legs still hurt but not nearly as much.
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Cajun- good for you staying sugar free!! I am week too!!
I just have a hard time understanding. What is best 1) to go ahead and take tamoxifen sence I am premenopausal or 2) have a hysterectomy and take the other drug forgot what it's called al ?? I'm so confused.
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aga, what does your doc rec'd? I'm having an ooph primarily because of being BRCA2.
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He said that both meds are good. I would have to have a hysterectomy or ooph if I wanted to take the other Ned. Basically I need to go into menopause. He also said I can go on tamoxifen for two yes then switch. Has anyone heard of that?
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yes, you can switch from tamoxifen to AIs once you enter menopause. Because we take them for so long now, I think lots of women will do that.
I'm pulling the plug...off comes the pain patch.
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On the tamoxifen vs AI question, there are definitely some recent large scale studies, as exercise pointed out.
What I recall reading (because I spend a considerable amount of time doing medical research, sigh) is that starting with tamoxifen is likely just as good, but that the switch to AIs relatively soon is crucial. If memory serves, there were great results from plans such as 2 years tamoxifen followed by 5 years AIs. I think where the results are not as good is waiting 5 years before starting AIs. Of course this is always balanced by individual factors such as heart disease, bone density, uterine cancer risk, etc. But the short term tamoxifen option might be really good for someone very close to natural menopause.
I will likely go straight to AIs because my BRCA2 mutation will lead to oophorectomy this year anyway.
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And I'm deported! Woohoo!
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deportation party at Scotland's.Sleep much better my friend.
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This article is a recent meta analysis of previous trials comparing tamoxifen, AIs, or a combination of the two, in post-menopausal women:
http://www.thelancet.com/pdfs/journals/lancet/PIIS...
This article reports results of studies comparing ovarian suppression plus either tamoxifen or AIs in pre-menopausal women:
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Aga: I am in the same boat as you. Both my MO and second opinion have recommended tamoxifen. My second opinion said for node negative pre-menopausal women, the studies showed no significant difference between tamoxifen and AIs. So, tamoxifen, being less invasive as we don't have to suppress (and can wait to see if real menopause or not), is the choice for me. Both said I could switch to AIs
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Cajun - dang that taxol is really hard on you. So sorry. I understand multi focal to mean more than one spot or tumor. I had a "constellation" of 5 separate tumors (not connected) that were all grouped together. They were of different sizes and grades. They staged me based on the worst tumor which was between 2 and 2.5 cm and grade 3. The others were smaller and lower grade. It was significant that the tumors were separate. If any were attached, they would take their total size and stage based on that. I guess i was lucky they were separate. 😏 in the biopsy report they were careful to note that were separate.
InSF - thanks for the article links!
Yay for deportation!!!! Hope mine is soon.
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Deportation, woot woot! Everyone remember to pack an extra pillow for your sweaty bald head for Scotland's party!
I kid you not, I feel like Taxol tried to kill me...but it didn't!!! God imparted on me that today was the day to get back up and start living again. Although I cant sleep because of the leg pain, for the first time, I have a renewed sense of hope.
Now if my poor kids could just feel better. This cold is a doozy, my son can't sleep at all.
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Party postponed until next week due to weather! The incision is a little sore, but it's ibuprofen sore, not narco sore. And the port is gone, and it took the creepy tube that went across my collarbone with it. My BS removed it in her office. It took about 10 minutes. When she was finished, I put on my shirt, hopped off the table and drove myself home. It was so much easier than getting it put in. No pre-op, no IV, no twilight sedation. And it's gone.
Cajun, how long does your leg pain typically last with Taxol? This time, once it's gone, it stays gone!
I have one kid down with a bad cold, and one at school angry that I made her go on an early release day (weather). Our winter weather (if we get any) isn't supposed to hit until after supper, but Atlanta has some PTSD from Snowpocalypse a couple of years ago when the snow/ice came a few hours earlier than they thought. Three and a half weeks PFC, so I should have enough immune system to be trapped inside with a sick kid.
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that is awesome, I cant wait to get mine out!
We are having crazy weather here. Two tornados and an absurdly warm winter with a ton of rain. I'm from Atlanta and you are totally right about how snow is handled there.
The leg pain has lasted longer each cycle. I'm expecting 10 days this time. Alright, I'm up (just barely) and off to DD for coffee.
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sorry for sick kiddies.
As for snow I'm in philly and we are prepping for a blizzard. Expected snowfall is 15-20 inches. Crap is supposed to start tonite between 7-9pm and end early sun morning. I am panicking because I have rads Monday at 8am and hope the city clears the streets quick. My treatment center is in the city about 45 min away and I live in the burbs. Luckily my rad tech told me that if I can't make it call and I possible I could come later but wait. I really don't want to miss a day and have it tacked on at the end, but that may happen. Go away snow!
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I'm stuck at home with the two littles on a "snow day" that doesn't actually have snow. Those are bummers. It looks cool outside, but it's all ice. My older daughter broke her ankle last year while sledding in icy conditions, so the younger one is distraught this morning that mean parents won't let her out to play in the ice-covered wonderland. LOL I really like snow days that are SNOW days, not ice days.
Still can't kick this stupid cold. But thankfully I haven't had fevers with it, so I'm just keeping my head down and taking it VERY easy. I can't afford this turning into a sinus infection or pneumonia or something else.
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We too are having a snow day today without any snow (yet).
I've got my little guy home from preschool today so we are trying to work and keep him busy at the same time. I think the snow is supposed to get started soon. I hope that everyone dealing with the coming storm is able to stay safe and warm! They keep saying that we will likely get 30 inches of snow here - ugh.
I was able to squeak in this morning for my echocardiogram. I have an appointment with the PS to pick out implants early Tuesday morning - I'm assuming that they will have cleared the roads by then. Then my BMX surgery is on Thursday next week (really trying hard not to be nervous about the surgery).
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Sounds like cabin fever all around. We are getting nothing but rain, rain, and more rain here. Other than the doc, I haven't been outside in days. I am so physically out if shape, I bet I could barely walk a mile. Still feel drugged and dizzy, but the pain is not as bad as it was last time. Or maybe I just dodged the worst of it with the patch. I think my issues with Taxol stem from being so allergic and that's why I've had every SE in the book.
Edws- I'm thinking about you and praying for you as you get ready for surgery. I would still do the bmx 6 times over before I'd do chemo again, fwiw.
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Snowing here in central Virginia. Normally I like getting one good snow each winter but not this time. Looks like we have about 4 inches so far, with many more inches in the forecast. I'm just hoping the power doesn't go out but there's a good chance it will. I'm in a rural area and we can get frequent outages when the wind starts blowing.
Have a fire ready to light in the the stove, jars of water filled and buckets of water in the bathroom for flushing the toilet, just in case. Meanwhile, I'm just freezing and keep turning up the heat. I miss my hair! Cars are parked at the bottom of my very steep driveway but don't really need to go anywhere until Tuesday.
Scheduled for deportation on February 4 and supposed to just chat with the RO after that. I told her nurse that I need to feel a bit better before starting rads since I had that fever and have been so congested and wiped out.
Hope everyone stays safe and warm!
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I've dodged most of the worst of the SEs from Taxol until now, but last night the bottoms of my feet were definitely numb. Today my big toes have joined in--the toenails feel very strange, and I wonder if they're about to start lifting and acting naughty.
Here's my little one all sad that I won't let her sled on the hill in front of our house (currently covered by sleet and ice).
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Carolinaamy that is the cutest picture! It looks like a post card! I love it! 😊
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awe, what an adorable pic! Love. I have neuropathy in my toes too. Fortunately, it never spread past that point.
My trio all have fevers. I just feel like crap all around. I suspect I have their funk now. I hate that feeling of so tired, but can't sleep. Walked a mile today to try to shake off the leg pain with no success.
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Amy, that is so pitiful. No way mine would be out there sledding on ice that young.
Your toe nails feeling funny may just the same numbness that you feel in your feet. My toes and the balls of my feet have been tingly and numb for a few weeks, but the nails seem to be holding on fine. A couple of fingernails have gotten weird and a bit thick, but no lifting yet. Cut them short, wear shoes all the time and be careful
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oh Amy that pic is so sweet and cute!
Scotland good advice with keeping your nail cut short. Mine are doing ok. I keep them super short and still get mani pedis. For me I think continuing to get my nails trimmed and keeping polish on them is helping. I did have a questionable index finger nail that looked like it was coming up at the sides but I cut it and it looked better. Plus I swear by b vitamins and my hair, skin, and nails vitamin that has biotin in it.
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Cajun you will get your groove back before you know it. After I finished taxol I swore I'd never be able to walk up a flight up steps without the dead legs which often forced me to crawl up the steps. Now I am able to run up steps at times.All this and I had 2 arthroscopic surgeries in the past 4 years on my knees. What helped me rebound is starting at a gym for the first time in my life. Something about sweating all the chemo crap out is cathartic.
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Amy - Love the picture - you are a very talented photographer!
I've had neuropathy since Dec 15 and it hasn't progressed too horribly since then. Balls of feet-down to toes are numb(ish), as are fingertips. Both toenails and fingernails have been a little weird, but haven't gone AWOL. Hang in there - we're gonna make it.
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Minnesota - when did the numbness start for you? So far (after 5 of 12 weekly taxol), I only have tingling but no numbness. I have serious doubts about whether I will make it all the way through, but am hoping to do at least 9.
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exercise_guru...I understand completely how you feel, I feel the same and I had a positive lymph node.. no scans..no tumor markers..I refuse to let my MO schedule me for anything other every three months.. he wanted to push it to 4 then 6 months...I feel at least I am being seen and having regular blood work every three months. Not sure what that is going to tell them but if it gives me peace of mind!! And its hard knowing which pains are not normal with the Letrozole causing bone and joint pain....how do you know???
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