Starting Chemo October 2012
Comments
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Good morning ladies. Just a quick update. Saw MO yesterday and got the green light to start the taxotere today. So BGC @ 11:00. I'm thinking I should dress warm or I'll be freezing in there with ice in my mouth and on my fingers. Brrr. Thinking the 1 1/2 hour is really going to drag! Not super happy with my MO yesterday. Talked to him about L Glutamine, 24 hour Claritin and/or a prescription for the nasty 3 days of bone pain from the Nuepogen I had last time. He informed me that I could also now experience some additional bone, muscle and joint pain from the Taxotere! Then he told me NO to any of the above!! Only got him to say yes to try Aleve because Tylenol wasn't working so great. He says that should be enough....great.... Anyway I am off in a few hours to begin the second half of my chemo journey. Oh and on almost no sleep! Double dosing of the DEX saw to that! No prescribed nausea meds for this chemo....so different from the last. Only have some Metoclopramide for breakthrough nausea that was prescribed from the beginning of this journey in case.
Hoping all you ladies have a good day free of any of the terrible SE's!
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Thank you LouBar for taking the time so share your feelings and making me not feel so alone
You all do that. Labs today confirmed that I am alive even though I thought for sure they would be low the way I've been lying around the house all week ... I need to get on my bike today I think. Thank goodness for Florida winters, I grew up in Cleveland and lived there for 28 winters, so it is a blessing to be here for sure.
xoxo
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Halfcan, my doc wasn't thrilled about the L-glutamine either when I asked to use it for tingling / numbness in my left hand ... evidently one of her patients lost feeling in her feet which was somehow worsened by the glutamine (hard to believe?) and she drove her car through the back of her garage. I did it anyways for just a few doses (it has an awful texture). It seemed to help, I don't know how regluarly it needs to be taken but I'm sure it helps to just not use it whenever I feel like it ... I'm a pharmacist, I should know better!!
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Does chewing on ice during taxotere help with jaw pain? I had a lot of trouble chewing and a lot of jaw tenderness after my first dose.
I am having a rough time on taxotere but keep trying to remind myself my first dose of AC was the worst of the four - maybe its the shock to the system. Anyway hoping the next 3 taxotere go much better. Also not enjoying the added SE of Dex.
Halfcan, we should compare notes in a few days. I hope you have an easy time with taxotere! -
I just sucked on crushed ice and small ice cubes. I did not chew ice......maybe that is what is causing the tenderness. Maybe someone else on here has some insight.
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More delays for me --- I'll be having surgery tomorrow to have my expanders out due to the recurring infection & fever. Hopefully, this will finally take care of the problem so that I can just focus on the last 3 chemo treatments. I'll be so happy if those can actually stay on the 2 week schedule once they get started.
Poke - glad that your labs were okay! I hope that you did get to enjoy a bike ride. I got to be outside for a few hours last night, and it was such beautiful weather.
Hope everyone has minimal SE's this week!
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Halfcan - I'm sorry your doc doesn't want you to use the Claritin for neulasta pain. There's a cinical trial using it (I can send you link, if you like). I've found that it works great!
To all - thoughts and prayers with you and hoping for better times!
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congrats!!! I can't wait till 19th for my last one!! what a great holiday to be done by then!! enjoy and good luck it's so nice to an end in sight:)
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Hi halfcan!
I started cytoxan/taxotere in October 2012. Four doses every 3 weeks. My last dose will be this Friday (Hurray!!!!) The first 2 doses were okay. No true side effects except for bone pain with Neulesta for a few days. Tylenol did not help whatsoever. I took vicodin just one dose that evening and tolerated the next few days. It lasted about 3 days. Second time around combination of "chemo brain" and Neulesta was difficult. Doc told me to take Aleve. It helped a lot!! Chemo brain lasted about 5 days. I did drive to do errands. I told myself never again when I am so mentally altered. I also asked doc if I should get temporary "temporarily disabled" card from DMV. I felt fine physically. There was no fatigue. I was still my usual self. He thought it was a good idea because he thought I may need/use it later on. He was right. I also asked about Claritin. He said it wouldn't hurt but not sure if it works. I started Claritin and Aleve along with decadron the day before chemo. Fyi Claritin helped a bit but I still had to take Aleve for a few days. The bone pain wasn't as intense but lasted 5 days instead of the usual 3. Following third dose I started getting tingling of hands and feet. I came here and read about l-glutamine. I approached my doc about it and he is good he has "do no harm approach" so I started my 30 grams twice a day last Tuesday...by Sunday morning I woke up with generalised edema. I was fatigued and gained 8 lbs in 5 days. All water weight. Apparently that can be one of the side affects of l-glutamine. So I had to take 3 days of diuretic to get rid of the extra fluid. I stopped the l-glutamine. I also talked to an athlete friend of mine who took it on and off after races he said the most he took was 4 gms a day. I was taking 15 times the amount he took. I might go back on it at a much lower dose after I talk to my doc on Friday. It is unfortunate it is not FDA approved for treatment of neuropathy so there is no dozing available for it
Halfcan I truely believe that these boards are wonderful to an extent. But I would heed your doctor's advice also. I do believe the more medications or supplements we put into us some other part of us will have to compensate for it. And I definitely suggest getting the "temporary disabled" card from DMV.
Good luck with taxotere and your treatments!
We are strong! Keep up the fight!
Sincerest
K -
Thanks "K" for the wealth of info! Yea, you are almost done with chemo!!! I will be buying some Aleve for sure.
301724- I have read the Claritin trial and thought it would be good to try. Oh well..MO says no.
Fight4two-yes we should compare notes as we go. :-)
nbnotes-I hope your infection get cleared up soon!
Feeling good this evening after a little nap following chemo. I had nausea all day from the steroids I guess but it was gone when I woke up. Hoping to sleep through the night ...Damn steroids.
Hugs to all and sweet dreams. -
Good luck nbnotes!! How awful that you have to go through this!!!! Positive thoughts coming your way and I wish you a speedy recovery.
xoxo
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Hi all. Haven't checked in in a while. I had TC treatment 4 last Friday. This one was by far the worst. I hadn't had any nausea until this one. More of a queasiness I suppose. It lasted about 4 days. Now my bp has went up and my MO put me on bp meds.
She did say at my last appt that she wasn't sure if she wanted me to do 4 or 6 treatments. I find out on the 20th when I see her again. I MAY BE DONE WITH CHEMO!!! Now I'm just waiting to see when my Oophorectomy and exchange surgery will be. I'm at 550cc now and think I will stop at 650cc. My PS said he can get a 700cc implant into it so I think that's where I will stop.
Hope you all are well. -
Halfcan - I've been thinking about you and sending positive thoughts your way - hope all is well and the nausea has subsided and the SEs are over.
MarianElizabeth - haven't heard from you in a while, hope all is well. I was thinking about you as Leonard Cohen performed here the last two nights, sold out both with rave reviews. I hadn't listed to Leonard in years and when you had posted your evening pre-chemo at his concert I downloaded his live in London CD. Fantastic - ..."there is a crack in everything, that's how the light gets in.." love it, truly good for my soul
Thanks!Ladies - in the paper today there was news about the sucess of a Phase 2 trial released at the San Antonio Breast Cancer Symposium. The link to the symposium is as follows: http://www.sabcs.org/PressReleases/index.asp The particular study was for advance ER+ BC, see as follows: http://www.sabcs.org/PressReleases/Documents/2012/b5c378711895d6b3.pdf
Day 8 for me so feeling good
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Thanks LouBar- I am over the nausea it seems. Today has been a good day...did some house chores and went to lunch and for a walk with a girlfriend. The rain took a break so it was nice to get some fresh air. I'm hoping the SEs will stay away but not holding my breath. Trying to enjoy the good days. I have seen Marian on some other threads lately but she isnt posting much as she is having some new SE issues to deal with.
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Going in for my bone scan today. 24-48 hours mandated away time from my sweet lil baby. These are going to be looooong hours - oh, how I will miss him! I hope there are no side effects with the bone scan (didn't research), as I'm enjoying my good days right now before next tx.
Eyelashes are starting to shed. Not so fun when they get in your eye. Then I don't want to rub my eye to get it out, as I assume that will cause increased shedding. Scalp is starting to hurt like when my hair was coming out from AC... but.. uh... HELLO... what hair is there to come out now??? Plus, its only 10 days since my T infusion, why is everything happening so much faster?! It took three weeks for my hair to come out on AC.
Thinking positive thoughts for my bone scan. And a SE free day for all!
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fight4two - Good luck with the bone scan today....hoping you get great results! That sucks having to stay away from your little one for so long but you don't want to share the radiation for sure. I had fun going through the border once after my bone scan. It set off the whistles and alarms...it was funny but took some time to get cleared to go through. I had my first Tax on Wednesday and so far no side effects from it. Just from the steroids I think. I did ice my hands and sucked on ice...did you? Do you get Nuelasta or Nuepogen shots? I'll have to keep an eye out for lashes falling out in a week or so I guess. I still have hair stubble from three doses of FEC so will see if Tax does anything.
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Thanks, halfcan! Sitting here letting the radiation soak into my bones right now. Hilarious thought going through a medical detector right now. Glad you had fun with it!
I did not suck on ice or ice my fingers. I think I will try to next time -- I wasn't really sure how to do it. So do you just not drink any water? I usually try to guzzle water during tx. My fingernails hurt (I've since cut them really short), my thumbs the most. And I had mouth issues, although not mouth sores. Is the sucking on ice just for mouth sores?
I really want a better 2nd tx! I had a ROUGH week, but the week after is feeling blissful in comparison. I haven't felt this good in a long time!!
I am still having the neupogen shots. Will see how my counts look soon. Did you get to discontinue your shots?
Awesome that you are experiencing no SEs! Fingers crossed that this continues!
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Good luck with the bone scans hope everything is good for you.
Lost hair but brows and lashes have just got a lot thinner than they used to be, probably the only hair I have anywhere................
...tried iced drink during my last infusion hoping to hold back the mouth sores, but hadn't really healed from the one before........started improving now but only after washing with Baking soda - seems to be working a lot better than the mouthwash I got from the dr.............
Hope everyone has a good weekend with little sign of SEs, hugs x
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fight4two-you can drink if you want to but sucking on ice and keeping your gums super cold should help with sore mouth issues. I know it did on FEC. And the icing of hands is supposed to help with fingernail and tingling issues. They had big gloves that they changed halfway through for me. It is standard to ice hands at my chemo clinic for Tax.. The nurse told me it showed huge benefit. We shall see. I had a good day yesterday, a great morning and then hit a wall. Now, I don't feel so good. Almost just like I did on FEC about 5 days into it. Just feeling exhausted and weak. The couch is calling my name. lol Yes, I will continue with the Neupogen shots as much as I don't like them. I get the fun bone pain around day 6 of the shots and it lasted 3 days this last time. Really sucked. Hang in there for the next day or two...maybe catch up on some sleep since you are without the little one. Hugs
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Checking in after a long weekend on the couch! Taxotere is kicking my butt...day 6 and still feel like crap. Some of the aches are a bit better though I think. My tongue is still horribly sore and looks like a shriveled prune. lol Let's see...sucked on ice during infusion, using Biotene and soda/water rinses. Guess I am doomed to this SE! Major joint pains seem a little better this morning so there is light at the end of the tunnel. Still some burning on bottom of feet and tingles in fingers but it's tolerable now. Mostly it is just the pure lack of energy and crummy feeling mouth!
It's been totally quiet here all weekend .... hope that means you all are doing well and are just busy getting ready for the holidays!
Take care. -
sorry to hear about you se's halfcan... ever try "magic moutwash"? its a perscrip..helps to numb mouth so its easier to eat
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Yes, in fact I have a part bottle in the fridge but I think it needs replaced. I do have a refill script that I guess I will call in to the pharmacy. At least the stuff tastes pretty good. I was thinking the magic mouthwash was for Thrush so I didn't do a refill.
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Halfcan - sorry to hear about you still not feeling well. Would you say harder than FEC b/c of more muscle and joint pain vs. nausea. Wishing you better days soon.
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LouBar - It is nice to not deal with nausea everyday...that much is good. Tax didn't bother me till day 3 and today is only day 6 so no idea when it will get better. Hopefully for you the SEs will be less....it is so different for everyone. Physically it feels like the FEC as far as exhausted. I felt the almost instant decline with Tax mid day 3. It was wierd how fast. Add to that white, wrinkled, sore tongue and jaw issues still bothering me. The joint and muscle aches and pains do seem a bit better today. Hoping tomorrow will be a big improvement cause I get achy sitting around too. With FEC I felt crappy for about 11 days right from infusion. Tax I had a bit of time at the beginning feeling normal. If it gets better in the next day or even two I would say this is better because it is shorter. My fingers are crossed.
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thx half can...
starting tax on the 19th... hoping it wont kill all of my xmas spirit..
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Hang in there ladies just starting taxotere... Days 3-5/6 seem to be rough but then I've a always felt better, still tired easily and my taste gets messed up but the achey-ness subsides and the overwhelming "I feel scorched from the inside" goes away.
See if your DO will approved your for naxopren (prescription strength alleve) that really helps with the aches. Keeping walking if only 15 min a day really helps with fatigue.
Icky tongue goes away maybe by day 9-10; that's using baking soda/ salt rinses very 4 hours and brushing frequently with biotene.
I'm doing good now but the cold snap has me a bit achy. Trying to plow through Xmas prep and work while I'm feeling better as treatment four ( but final) looms on the 20th. I may be crappy for Xmas but hopefully there won't be too big a disruption.
Hoping everyone is experiencing the joy of the season; family and figgy pudding; a pretty pretty tree with lights or a shiny menorah with lights. Find the light inside as well - remember the less fortunate - our homeless folks and our soldiers still fighting. Blessings abound and lessons are in every moment. Love fiercely and often. Let go of petty conflicts. Life is precious - this we all know - hugs! -
Thanks, Caitgrace! "Blessings abound and lessons are in every moment." Truer words never spoken!
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Halfcan - thanks for keeping us posted, it is helpful, I used to feel more comfortable in not knowing but now I feel I need to know exactly what to expect. Caitgrace - thanks for your update too and your lovely positive message
Celineflower - I'm with you on the 19th for first Taxotere, I'll be thinking of you.
I had an appt. yesterday with another MO for consideration as a participant in a study out of Harvard. Seems I'm eligible so will be able to have a positive contribution for which I am pleased. I did take the opportunity to get a second opinion and the MO is satisfied with everything as far as my treatment. I pressed the issue re. future scans / screening. Seems only the mammograms / ultrasounds on breasts will be screened moving forward. I'm not satisfied re. the posibility of this impacting bones or liver down the line and don't understand how screening for early detection is not only more beneficial for treatment but also more cost effective. I plan on questioning my own MO and surgeon. Is this something bugging anyone else or am I just a control freak -I am by the way...
Anyway - the appt. was great, the nurse was lovely and provided even more resources. She did mention that they have a lymphodema clinic at this hospital and if I was considering flying to go in first and be fitted for a compression sleeve to wear when flying. Wow - this was news to me, I thought if I didn't have lymphodema then I had no worries (although I realize I am not out of the ballpark yet and both chemo and radiation can lead to lymphodema). So needless to say, I will visit the clinic in the new year before flying anywhere.
This is my good week, pre-chemo. My folks are visiting from out of province so we will be celebrating xmas with them a bit early which is good so my shopping is all in order
Take care ladies..xo
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* celine gives loubar a bottle of purple bubbles *
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Day 8 post chemo... Still feel like I was run over by a MAC truck. Forced myself to get dressed and go to the store and so exhausted I wonder about my sanity. SEs are improving though. My white, painful tongue is improving and feet and fingers are not tingling now. Just get so light headed when I'm up. I know its the low white count doing it and a few days it will be better just like before.
LouBar- have a wonderful visit with your folks!
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