August 2011 chemo, anyone w/ me?!

Grimbol

hmm it is weird that every place is different.  I get Taxol, but they drip in Benadryl, steroids Zantac, etc. etc, not really sure of all of it, but I don't have to take anything before or after, just nausea meds.  My first infusion I was fine, 2nd one I wasn't and I did have a reaction, but they were on top of it very quickly and just slowed it down.  They said now they will have to do it slowly each time since I did react.  I felt weird, heart was racing, very hot, about to throw up but never did, just really weird.  But it only lasted a few mins.  They did put more Benardyl, steroids etc in, and then restarted the Taxol and I was fine.  Not exactly looking forward to next Wednesday, no 3.

MaryjRN

I jsut have to clarify my statement of incidence of reaction being rare.  I meant anaphylactic reaction.

It amazes me how everyone's pre and post meds are different.

Hope the next Taxol goes in better.   They should have your rection information right in front of them, but I would remind them that you had a reaction and need it to drip in very slowly.

Tanya62

Hi.  You sound like me. I had my first chemo treatment last Thursday, it will be for 16 weeks, every other week now.  Then 6-8 weeks of radiation (5 days/week) and then take Tamoxifen after that.  What I am just finding out is how fatigued you are afterwards.  My chemo was 1 week ago and it is a week later, and I still can hardly get out of bed, except to get some food or go to the bathroom.  I left the house only once this week to get some groceries and it wiped me out.  I have fibromyalgia, and since chemo started, it has increased what was very manageable for the past 10 years.  So, I am sore in the muscles and laying in bed is uncomfortable.   Lack of sleep increases the fatigue as you can imagine.  I will be so glad when this is over, at least the radiation won't be so severe as this.  What are you symptoms, are you handling the chemo OK?  Hopefully, it gets better as we get "used" to it.

MaryjRN

Hi Tanya,

Yes our stats look similar, don't they.  I can't imagine adding fibro into the mix.  Resting is the best thing you could do for yourself right now.  Everyone is reacting differently to the chemo.

Hope you are feeling better soon.

summergirl1

For those of you starting on the taxol/Taxotore route (not sure of the difference) but I am on my second session of Taxatore/Cytoxan given at the same time x 6 sessions every 3 weeks and I think it has been OK no major SE's just about 3 yukky days after (shakey and achy) then back to normal didnt have any reaction to taxatore either they have me on steroids day before chemo and then 2 days after, hope this helps anyone starting Taxol. 

Chrys23

Hello everyone --

I stopped the Dexilant for GERD and no stomach cramping, bloating gas today. Hmm....I called my ENT to see if he can prescribe something else, but no word yet.

I called the ONC to report the itcy/burny issue neuropathy issue -- now on to my hands, feet, even my tongue felt itchy today and rest of body (comes and goes), so I haven't heard yet. It's 4pm here in NJ and I guess I'll call again tomorrow. My cancer center is huge and I'm sure they are wafting thru all the calls. 

Take care everyone.  

Chrys23

BTW -- Ellen and Grimbol: have they prescribed anything for the itchy/burny sensation/neuropathy? What are the next steps for this type of side effect -- I think you both said possibly reducing the Taxotere or stopping it altogether? I want them to be well aware of this happening to me before my #3 treatment next Wed. Now I'm scared -- I don't want it to get worse.

Grimbol

Chrys, my onco said he would think about reducing it if it gets worse.  Nothing prescribed to help it though.  Glad you are feeling a little better.

celina2011

THEATHERCAT sorry to hear what you,ve been going thru but I dont have my meds here. I will definitely give you the name as soon as I get home .Since I have my first cycle I never felt anything at all. No nausea, headache, stomachburn and I sleep weel. The only complain I have is constipation and I used dulcolax which I will not do it again. It throws me off very bad. I will drink prune juice everyday and thatwill take good care of it. I also eat bittermelon to help for my RBC and I did not inject the neupogen that they told me to help out my WBC. I dont want no bone pain so far so good and I am working. I said to myself if the second cycle will be like this then I can say bring it on. I knew this site is very helpful compared to this american society helpline. You dont get much from those people. Also I eat moslty soup and a little bit of rice. I eat everyday squash, brocolli and some  asian green leaves.

Madismommy719

What is the difference between Taxol and Taxotere???  Does anyone know?  Can Taxol be given WITH the A/C or does it have to be seperate?  I'm doing Taxotere and it's one regime, TAC.... so I don't have to do 4 or 6x of A/C and than a seperate 4 or 6x of just T.  My steroids are also decadron.... and i have to take 2 the night before infusion and 2 the morning of and the last 2 the night of..... it's so weird to me that it seems every onc has their own course of action and preference of chemo combos.... It seems that people with my similar stats are on a completely different path than me a lot of times.... just so weird. 

 Hi Chrys... glad you are on here and that you made the phone calls, except BOO that they haven't called back yet.... frustrating!!!  

vtellen

Chrys- I would call the doc on call this evening if you don't hear back before they close. "24/7 call with ANY questions", that is what my office says. So call, if you don't hear back today. Itchy tongue is getting weird, if you ask me. Do you meet w/ your onco before chemo? Because that is when you can discuss lowering the dose or whatever.

summergirl1

Just googled it hope this helps everyone

Taxol (paclitaxel) and Taxotere (docetaxel) are both from the same family of medications - the taxanes. Both of these show a high level of activity when used as single agents in metastatic breast cancer.
In reviews of reported studies, when compared with standard therapies Taxotere looks to be the most active single agent in treatment of metastatic breast cancer.

There are some differences in the treatment schedules of the 2 medications, and there are some differences in the side effects of these 2 medications. I have listed the side effects of both medications.

Taxotere: decrease of white blood cells, red blood cells and platelets, flu-like symptoms, fluid retention, numbness and/or tingling to fingers and toes, muscle aches or bone pain for a few days after each treatment, mouth sores, hair loss, decreased appetite.
Uncommon Side Effects: allergic-type reaction, blood pressure and heart rate changes, nausea and vomiting, diarrhea, skin rash usually occurs on hands and feet, nail changes, menstrual cycle may become irregular or stop permanently, menopausal effects including hot flashes and vaginal dryness. Decreased desire for sex during treatment.

Taxol: decrease of white blood cells, red blood cells and platelets, allergic-like reaction, blood pressure or heart rate changes during the infusion of the medication, mouth ulcers, numbness and/or tingling to fingers and toes, muscle aches or bone pain for a few days after each treatment, mouth sores, hair loss, diarrhea.
Uncommon Side Effects: nausea and vomiting, nail changes, menstrual cycle may become irregular or stop permanently, menopausal effects including hot flashes and vaginal dryness. Decreased desire for sex during treatment.

jbagley

Summergirl, thanks for looking up taxol and taxotere. I am suppose to start taxol Monday. I am a little nervous. The taxotere sounds like it has less side effects! Scared.



Chrs, I would call onc about your itching tongue sooner than later! Anytime the tongue is involved you t think of swelling and breathing issues..



I am walking in the Susan G Komen race on Sunday here in Bangor, Maine. I am doing the 1k, while my daughter will be with my aunt walking the 5k for me. She is so great.



(((( ))))

.../ small wine glass, here's to no se. Or you could use it for juice.

jennifer

dianamaps

Thanks, Summergirl1, for listing the diffs between taxol and taxotere.  My original plan involved 12 weeks of taxol, once/week, but because they don't have enough supply at my doctors, I've been switched to taxotere instead.  The taxotere regimen is different; it will be only once every 3 weeks, with a total of 4 doses.  So that still equals the same 12 weeks I would have had otherwise, but once every 3 weeks instead of weekly!  

 My onc says they're both "first line" approaches and I should not worry at all about changing these, cancer-wise.  Other diffs I know about:  taxol costs much less than taxotere.

  This study compared early stage bc with the two drugs and different dosing regimens - http://www.cancer.gov/clinicaltrials/results/summary/2008/weekly-paclitaxel0408 - and there were slight differences among the results.  Taxotere did a little better with "disease free" survival, but they both improved survival overall. Here's another study too in which taxotere did well - http://scienceblog.com/community/older/2003/E/20032882.html

 The chemo nurses told me that the s/e are often stronger with taxotere, esp weight gain because of water retention, and neuropathy.  And that's just great, because everybody loves a little weight gain.  I can't find the reference, but somewhere on the internet is a study that showed that a tiny % of people had permanent hair loss with taxotere (higher than on taxol).  Psych. 

 So I begin 4 doses of taxotere in early October, once I finish with one more round of AC.  I believe that I will begin herceptin at the same time, at least I was supposed to do that with the taxol and they haven't said otherwise yet...   

capinva

Did not get a treatment today because of my cold. My onc is letting me wait until Monday. He also gave me Emend for anti nausea. Has anyone else taken this? He said this should stop the throwing up. He also said this treatment would be harder than the last one. This will be my 3rd A/C. For those who have finished their 3rd tx was it really bad? I'm nervous now. But if Emend keeps me from throwing up I hope it won't be so bad. Suppose to have my 4th and final A/C tx on my birthday. Great birthday present. Then I start 3 doses of Taxol. I asked about the shortage and onc said there is a shortage but he is more worried about a reaction to Taxol like I had with Taxotere.



Anyway, I am going to enjoy the weekend and feeling normal and good at this point. Just dreading Monday morning. At least then I am halfway done!



Regarding the hair, I still have a little fuss on top, eye lashes and eye brows. No hair on the legs, no nose hairs. My cousin finished chemo and radiation tx in June and her hair is growing back. She can already go without the week. Hoping my hair grows back fast too.



Hoping everyone has a free s/e weekend.

Madismommy719

Thanks summergirl!!!! That helps a lot! Not too much difference...



Jenn....YAY for walking in the Susan G!!! My cousin is running a 5k next Sunday with my name on her back, my daughter and I are going to cheer her on!



Ha ha Diana on the permanent hair loss!!! None of us are going to have that problem!!!



Capinva....I got emend my first tx....I barely felt nauseous at all, and that was my number one fear going into it....I woke up a few nights a little queasy but a compazine knocked it out....never puked or even considered it once....I'm hoping for the same results next week after tx2!!! I had the emend into my IV and pill form 3 times.....I'm assuming it was my "wonder drug"???

summergirl1

Oh NO another post about the possibility that the hair might not come back nooooooo , Im now freaking out as the only thing getting me through this is telling myself IT WILL GROW BACK , but now Im getting scared, it never even entered my mind before that it may NOT , how come no one ever mentioned that to me at my drs visits  all they kept telling me was that 'dont worry its only temporary' , I dont think I could possibly  live with no hair its only been 2 weeks of bald for me and I HATE IT so much , I dont even want to go out of the house anymore .  I never feel good about myself and HATE MY WIG . 

Grimbol

I need to vent here for a few mins.  I am soooo upset, but I may be overreacting and you can all tell me if I am.

Today for DH (except I'm not so sure about the D for now) printed off some photos to send to his parents in UK.  His mom's birthday is coming up.  We had DD's wedding pics, 2 new grandbabies, plus a whole family 18 of us, that we managed to get last weekend.  My oldest son has a new camera and was snapping away during the day.  He took one of me with out a head covering, topless, I believe is the term here.  Just in the family I don't mind but I am still very unsure about being seen generaly like that.  Well, yes, my 'D'H printed off this pic and sent it with the rest.  Didn't ask or anything.  I was so angry when I came home and he showed me the double set he'd had printed to send to my parents too. He seems to think it is just fine and I feel humiliated, I'm just not ready for that yet, been a tough week anyway.

What do you ladies think, am I over reacting and I should just laugh and get over it or should I be upset with him?  He's going away for the weekend with a group of guys, I've asked one of them to take him paint balling and shoot him where it will hurt the most!!

missey29

vtEllen - Just had my chemo today. It goes down like this: day before treatment 5 tablets of dex in the AM and the PM, 2 tablets of dex in the AM the day of chemo. Chemo - Taxotere first, slow drip, found out that I get short of breath during a faster drip. Then the Cytoxen and then 10 minutes of saline. When home then a few different pills for nausea.

Taylor777 - I'm doing the big chop tomorrow and I am rocking my two wigs. They are just fine for now. My last chemo is 10/27. I wear a scarf at home.

Wishing all a free S/E day!!!

Madismommy719

Summergirl....I've been trying to find an actual stat on the permanent hair loss to show how small of a chance it is.... I can't even find one it's so tiny..... Don't worry yourself!!!!



Grimbol....I would be very upset with my DH.... We may laugh about what we are going through much later down the road but it's all so new and raw, especially the hair loss!!! You've just solidified why I'm not letting a single pic be taken of my bald head..... I like your paintball to the privates (gotta hurt the most?) revenge approach!!! :0)

Robyn6463

Aw Grimbol...Guys just don't think! It's a terrible time to be upset with them, I've been made at my DH since last Sunday. On the other hand, they do this stuff all the time, so doesn't it add a bit of normalcy to what we're going through? I mean, just because we're dealing with chemo doesn't make them more thoughtful, even though we wish it would! I'd be upset about the picture too! (Mine came home from work 6 hours late on Sunday...and had forgotten to bring his cell phone with him, so I was worried, and he thinks I should appreciate all the overtime he's been working. I really do, but a phone call would have been nice)! Today is his birthday, and he's taking the weekend off, so I guess it's time to forgive him! 

Nose is running non-stop this morning, a bit of a headache. Big plans today for lunch and dinner, so of course, I don't feel well! 

MaryjRN

Grimbol...I'd be pissed too!  They just don't understand...but, it doesn't sound like it was done maliciously, just being a stupid guy.  Ask him if he can contact the family and if they can delete it. 

I know it sounds like most of our guys are really trying, but some of the actions are quite ?.  Mine wants to go tomorrow on a 100 mile 1 way trip to go visit DD21 at her college campus, go out to eat, help with her apartment.  All this after he's already put in 6 hours at work.  I just had my #4 AC 5 days ago.  I'm a little wiped out right now, trying to not catch any diseases, and get ready for DD27 wedding in October.  They just don't get it!

Robyn...hope you're feeling better soon.

Madis...Hi Jenn!  I agree with the paintball shot.  There are no pics of my head, not even one with my wig yet.

Grimbol

Thanks guys, you are quite right, normalcy is it indeed, just no thought about it at all.  Part of it was timing too, lousy timing for him to do something like that, but I will forgive him, I need him too much thru this.  But thanks for listening and responding, I needed to vent to people who would totally get it.

Robyn, hope you have a great day today and feel better. Sometimes having something to do helps, but not always I know. I'll be praying that today is a good day for you though.

oaktownmom

Three days past AC #3, and I feel like I'm crawling out of my skin! Like there are millions of ants inside my body - hard to explain. Anyone else ever feel anything similar? Thankfully, no nausea (yet). I think my hair is going this weekend (I did cold caps on my first treatment, which I think has delayed my hair loss - looks like they work, but I really hated them and decided to stop). You all have handled the big shave with such grace - I think I'm going to go that route too.

michelleo13

Saw my ONC this morning and asked her if there's a shortage of Taxol in Canada, too. She said she hasn't heard of any shortages here. I am still scheduled to start Taxol at the beginning of October.



My bloodcounts were low today, likely because they should have booked me for lab work on Monday instead of today. They're going to do the bloodwork again on Tuesday morning and hopefully they'll have recovered so I can go ahead with my chemo #4 that day. I have that Nov 15 date etched in my brain as the date I'm done chemo. I really don't want anything to delay it!



Grimbol, I'd be upset too! Someone took a picture of me in my wig the other day and I didn't like it at all. I plan to hide from cameras for the next few months!



Hope everyone has a great SE free weekend!

Grimbol

My last chemo day should be the Wednesday of Thanksgiving week!  It would mean I wouldn't be expected to cook, would that be good, but then I probably wouldn't want to eat much either.  Of course, it could be put off, wbc etc. but yes, I have that as my goal so I don't want it put off.

summergirl1

My last TX is Dec 1st and I too am so looking forward to that day , I have a calendar and am marking off each day, I am worried though as I am due to start radiation on dec 13th and will have to stay at the  Hospital for that its  approx 100 miles away from my house and My first Grandshild is due Jan 10th I am so afraid I will not make it for the birth, that would really devestate me. this bloody BC is ruining my life and I want it back SOON . and I am sure you all agree!!!!

My DH wants me to go out to our local tonight which I usually love to go on fridays as its always a laugh but I already feel like I am having a panick attack havent been in there since THE WIG, and dont feel good about myself anymore , think I will have to say no. even though I swore I would not let it effect my life , its still so hard to sit there and pretend I am fine  I am fine otherwise just have no confidence .well enough moaning I hope you are all well and minimal or no SE's

vtellen

Summergirl- Of course, this is coming from me - the non-wig wearer - but, what if you tried going to the local in a hat or scarf? Just to see if people react to you differently or if you feel more like yourself? Just sayin' it might feel better?

October 10. Last chemo effing day!!! They called me the other day to ask if they could reschedule my time for the 10th. Wanted to change it from 10:40 to 1:00. I stammered around a bit, and then said " You know, that is my last dose and I kinda hate to move it back even a couple of hours!!" So, now I'm going in at 9:40 instead!

vtellen

BTW, I will be getting radiation after, hope to be done by xmas!

MaryjRN

Summergirl...I agree, it is so hard to sit there and pretend everything is fine.  We do want our 'bloody' pre bc lives back!

vtEllen...I will start my rads right before Christmas.  My last chemo is set for mid December. Hope you are done quickly!

Michelle...my onc says we don't have a shortage in the Chicagoland area.  It could be other places, though.

Grimbol...I haven't thought of using the bc for getting out of TG cooking!  Good idea!