Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Joan, Headeast's reply is consistent with what my MO has told me, and my own reading. Even though I'm older (66) than Headeast, I am getting 6xTC because my BC is stage IIIC (11/13 +nodes).
I'm participating in a phase 3 clinical study comparing AC/T regimes with 6xTC. According to my MO, it's already established that the various AC/T regimes are slightly more effective than 4xTC for my type and stage of BC, but AC/T has a slightly higher probability of long term severe SEs (leukemia, heart damage). The purpose of the study I'm in is to determine if 6xTC (rather than 4xTC) is as effective as AC/T, but with reduced SEs. I was randomly assigned by computer to be in the 6xTC arm of the study.
I'm not sure volunteering for the study was the "best" choice; and I'm not sure that being in the 6xTC group is the "best" option either. But the reality is that all the options seemed equally balanced, so no matter what I had chosen, I'd still be wondering today if I'd made the "best" choice! Once I came to that realization, being part of a study where my uncertainty would do some good for future sisters was the "best choice" for me. -
Hi ladies,
I was in the ER yesterday with a temp of 102.6. It started at around 6 pm and when I realized it was getting higher I called the on call doctor. They patched me straight into his phone and off to the ER I went. 2 liters of IV fluid and antibiotics and the fever finally broke. They sent me home with oral antibiotics as well. I was in the ER from 11 to 4 am.
The on call doctor said they have to figure out why I keep getting temps this far out from treatment. So today, I am lying in bed. Taking it easy and drinking water, tea,juice. The whole day. I am soooo weak right now.
This whole cancer thing is so exhausting. I did ask for a Xanax when I got there which they did give me, because I was so weepy.
This is some tough stuff, between the pain and rashes and all the other SE we are all experiencing. All I can say is this too shall pass over and over...., -
SchoolCounselor, I am somsorry tou had to go to the ER but happy they have it under control now. Years ago I ended in the ER because I was so dehydrated that the temperature and pulse went up. I had a cold and I guess I forgot to drink fluids.
Please let us know who you feel later, I am sure you will be fine, but like you said, this is some weird stuff and unpredictable. -
Joan, I was originally scheduled for 6 TC because we did not have lymph node results, so MO wanted to throw everything he could at it. I chose to avoid AC+T because I have a heart murmur and there is a lot of heart disease in my family. It seems if you have even a tiny preexisting condition, chemo exasperates it, so I did not want to survive BC only to have heart failure in a couple years. I need a strong heart for my job as well. Once I later learned I was node negative and learned that 4 is the standard protocol, I asked about 4 vs 6. My MO initially was insistent on 6, but I asked him again a few weeks later and he agreed to do oncotype. When it came back low, he said that 6 would offer no additional benefit, but too much additional risk. If he had recommended 6, I would have done 6. I am 43, 2.0 cm tumor, 1 sentinel node was negative. 4 AC was compared to 4TC and TC was superior. 4 AC has been compared to 6 AC and 4 AC was superior (so more is not always better). 4 TC has not yet been compared to 6 TC, and AC+T is currently being compared to 6TC in clinical trials. I did not qualify for that trial because of negative nodes and low oncotype.
SC, I am so sorry that you ended up in the ER. I feel your pain, having had to go a few times as well. I run fevers from days 4-6 and 9-11 or 12 about every time, and each round they get higher. My MO just says that this shouldn't happen from the chemo...um...it is happening. Obviously it is happening in a few of us, because your chemo was the day before mine. I hope the fluids and antibiotics are helping, and I hope your fever goes down and you get feeling better quickly. You are in the nadir period now, and that is when my temps spike the highest. I hope the antibiotics keep them down from now on for you. -
Rash has now turned into hives. I have welts (some 2 inches across) all over my groin, lower backside, both hips, upper abdomen, both elbows, one knee, underarms, nape of neck and even behind one ear. Taking Benedryl every 4 hours, on prednisone daily as prescribed, and rubbing Cortisone 10/Benedryl mixture on all of it about ever 3 hours. The itch is generally mild with those treatments, but it got so much worse since yesterday, and I have been on steroids for 4 days now.... Hmmmm
Seems, like most allergies, that the Taxotere allergic reaction gets worse with each exposure. I have one more tx to go, so am dreading what more this could do to me. Also, does anyone know if rads brings back the rash? -
Team, what you are describing is what happens to me when I used to eat fish. I would ask for an epipen, the next treatment. Those reactions according to my allergist is your body warning you. Finally it just shuts down to protect you- anaphylaxis. Don't want to scare you, but in addition to all those Meds you need an epipen on hand. -
teamkim. Did you call onc about the hives? That would scare me. This stuff better pay off dammit -
TeamKim- Make sure you call your onco to let him/her know about this latest rash situation. If you have an onco appt, the same day as your next infusion, make sure you tell him/her again about the rash situation and ask what to do about this at home. Allso alert the infusion nurses about the rash prior to them starting any infusion on you. It may mean that they need to give you some benedryl in your pre-chemo IV drugs and watch you carefully during the next infusion.
SchoolCounselor- Sorry to hear you had to visit the ER. Unfortunately, it is always better to be cautious and contact your onco/on call onco when a side effect arises and starts getting out of control.
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SchoolCounselor -- Just went back to read and catch up on posts, and saw your ER visit. So sorry you had to go through that -- take the time to rest and recover. (((Hugs))) I had the high fever twice during 2nd tx (though it didn't get to 102), so I know firsthand how that wipes you out! Ugh, this chemo is so nasty! MO thought mine was a reaction to Neulasta, and told me to take Tylenol & Motrin alternating every 3 hours day of Neulasta & day after for tx 3. I ran some very low grade fevers, but it never spiked way up this time.
Wrenn, SC & Melrose -- I haven't called the on call MO since the rash got worse, but I did call on Wednesday when it first started. I emailed a photo to the onc nurse then & she texted my onc (who was out of town) and phoned in the prescription for Prednisone. At the time, I was still taking Claritin, so they said to take Benedryl at night. I figured out today that since I am not on Claritin anymore, I should be taking Benedryl all day. So I stepped it up to every 4 hours today, and I think the hives might be a smidgen better now than they were this morning. Maybe I am turning the corner. I have an appt w/MO on Wednesday for follow up to this tx, but if the hives aren't noticeably better by Monday, I will call. I have been taking photos each day so I can show the progression to the onc at my appt. -
Wow, it really is amazing that all of us are having the hives/rash, and it seems to be after the 3rd treatment. After getting short of breath last night, and wheezing (luckily my kids have asthma and I used their rescue inhaler), I called again today and got a prescription for an oral steroid. Hopefully it will work. I like the suggestion about the epipen, I am going to ask for one at my next appointment. After these hive I am really worried about the next treatment.
SC, sorry you ended up in the ER! I hope they figure out what's going on soon. -
SeattleTwinMama, I got a rash on TC#1 only. The MO increased my steroid medicine to two days afters TC#2 and didn't get it again. He said to take Benadryl or Claritin and that it would dissapear the next day and it did.
We are all different. -
Teamkim and Seattle - I read something about hand and foot rash from the TC on a different thread. Not sure if it applies. I am on day 5 of a 6 day steroid pack and my rash has finally gone after 6 weeks or so. No more Allegra, Benadryl or cream. Oh sweet relief! I hope you get the same. -
Team Kin: My MO prescribed steroids up front (Dexamazone) with each treatment in addition to the Claritin for Neulasta pain (for 5-6 days) & the Benedryl w/the infusion. I took the steroid pill morning and night starting the day before infusion and for two day after the treatment. Not only did I feel like Wonder Woman for those 4 days with tons of energy, I never had allergy problems. Who knows if that's the reason but thought I'd share. -
SeattleTwinMama and TeamKim -- so sorry to read about your struggles with rashes. I hope the medications are working, and you are both feeling better this evening.
SchoolCounselor -- ending up in the ER over the holiday would make me weepy, too. I hope you are feeling stronger now you are back at home.
Keep us posted on your progress! -
SchoolC-I hope today finds you feeling better! I'm sorry to hear you had to make the trip to ER and I am sending prayers your way that this passes quickly.
BlueGrass-In ref to your clinical trial and whether you are making the best decision...I was told at the beginning by my BC, that if I had the chance to get in all the trials I could..as they watch you closer than without. You also get the benefit of extra meds...(not sure if thats a plus or not!)..I wasn't able to get in a med trial, as there was nothing I qualified for at the time. I did ..and am doing..a cognitive trial in ref to "chemo fog"..they do 2 hour test before you start chemo, after..then 6 months out. Plus they take a load of blood work. I joked with the lady that did this, that I was going through peri menopause before I was diagnosed and am scared after chemo I wouldn't be able to get in out of the rain. I can tell you, that through chemo..especially the last 3-4..I would "lose" words. Like when you are trying to think of a word and its on the tip of your brain?...mine wasn't even on the tip..I would draw a blank. I'm about 2 mths out and that has gotten better..but still happens at least once a day.
Seattle & TeamKim-Jeez..I'm soooo sorry about those horrible welt/rashes! I'm sending prayers that you get some relief..more than a smidgen!
TwoKnob and Nocompromise - Curious to how ya'll are getting along? I hope well and getting stronger! -
im in hospital with diverticulitis and diarrhea. Will update soon. Rethinkining chemo -
Oh no, Wrenn! Thinkimg about you, and praying for you! Please do update when you can. -
best wishes wrenn! Sending u all the best karma possible!! -
Oh no Wrenn!!!! ending prayer to you. Please let u know what is going on,,, -
wrenn, praying that you recover soon!
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Wren, so sorry you are in the hospital! However, with two nasty things creating an uproar in your already stressed GI tract, I'm also glad you're someplace where you'll get the attention you need ASAP. Just remember you have folks all over the continent (!) who are sending you good thoughts and prayers for swift healing. -
Wrenn..... hope you feel better very very soon and everything gets under control. So sorry that you have ended up in the hospital but it's better to be there and be monitored and watched. Gentle (((HUGS)))!!!!
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oh no, Wrenn!!! I add my prayers to the others here -- know we are watching the boards for news. Big virtual (((((((HUG))))))) -
CkMoss -- the cognitive trial on "chemo fog" you are in sounds really interesting. Thank you for going the extra mile to participate -- the research on all aspects of this #%^* disease is vital to all of us! Your description of being afraid you might forget how to come in out of the rain was too funny. I also find myself losing not just a word, but whole choo-choo trains of thought! I wasn't blaming it on the chemo drugs, but more on the waves of stress/worry that smack me upside the head when I'm least expecting it. In a way, it would be reassuring to know that my ability to concentrate might grow back with my hair! I hope you will stick with this discussion thread long enough to tell us how you are doing at the 6-month end of the "chemo fog" trial! -
Oh Wrenn, I'm so sorry to hear that and that you're feeling so poorly. We are here for you and care very much how you are doing! Please keep us posted. -
Wrenn- So sorry to hear that you are in hospital! Are you at the VGH? I will be on the CHEMO chair tomorrow for TX # 3, please let me know if you need anything ....just send me note, I will have my IPAD with me. My thoughts & prayers are with you. " Hugs" -
hair started to fall out yesterday- and stupidly I was actually shocked as it was only 13 days after treatment. For whatever reason I had mentally prepared for 3 weeks (tho the first time it was exactly 2 weeks). Anyhow, spent the day crying and throwing myself a good old fashioned pity party.
Today I put my wig on and it didn't make me cry like last time lol
Trying to motivate myself to decorate for Christmas while I am feeling good- treatment 2 is a week from today. I've decided to give myself daily tasks for this week as I anticipate a general feeling of yuckiness next week.
Hope everyone had a nice Thanksgiving!!!
Wrenn- thinking of you!!!!!!!! -
Oh Virginia, I am so sorry. Pity parties are sometimes a very good thing! I'm glad you like the wig, I got mine just because I am supposed to, but I wear scarves when I go out.
This i the first time we did not put up the tree after thanksgiving, I have to get going on it, but need DH to get it out of the attic. I will start to wrap the kids presents though. I have no idea what to get DH, he has been so wonderful through all of this. I was thinking of getting him something engraved from a store like things remembered, but I have no idea...any thoughts?
Wrenn, hope you are okay, please check in when you can.
Hope we all have a good week of minimal SE's -
SC - thank you so much for your kind words - they are much appreciated. The wig is my wig from 2007 - and I was ok with it then, but now I think it looks a bit silly - I think I just resent it and what it stood/stands for. I am with you though - bandanas and baseball caps for me. I wore the wig last time bc I worked thru my chemo... Not this time - I'm 25 years with my company and have 6 months leave so I am taking advantage of it....
I have two trees - a wrought iron tree for "special" ornaments plus a traditional green tree - working on the wrought iron tree today.
I am SUPER impressed that you have GIFTS!!!!
What a lovely thought for your hubby!!!! Maybe a special mug or fancy pen?? I'm guessing they have a website - they might have some creative ideas there......I'm so not creative - but I am crafty lol
Hugs -
*For those who finished chemo a while ago*
Can you share how you've been feeling since you finished? I finished almost 6 months ago. A lot of my side effects are gone (neuropathy, stomach issues, etc.) and I felt pretty good the first couple months, though still got tired easily. Now however -- I'm constantly exhausted. I'm not sure if it's because of my pre-existing health issues or a delayed effect from chemo? I spend half the day in bed or on the couch.
I also have a lot of pain throughout my body & especially in my neck/spine. And the front of my neck has been swelling/tingling on & off, which started during chemo. Over the last month or so I've had more hair loss (mostly brows/lashes but some head hair too) and my scalp is super sensitive/painful like it was when I lost my hair! Also I'm still in chemopause (I'm 30) and I haven't had a period in nearly 10 months.
Just trying to understand what is normal and what I should be mentioning to my doctors!
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