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Weekly Taxol group

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  • lorraine10
    lorraine10 Member Posts: 2
    edited January 2013

    THANKYOU FOR GETING BACK TO ME, PAIN STILL BAD ON FLUID RETENTION TABLETS, I KNOW HAVE NOT GOT LONG LEFT, A BIT FRUSTRATING BUT HAVING SOMEONE TO SHARE IT WITH HELPS THANKYOU

  • adagio
    adagio Member Posts: 713
    edited January 2013

    Peggy - good that things are going well for you after the taxol. Do you take the neulasta shot? I am going for taxol #2 this coming friday. My fingers are still quite numb and the pain in the thumb nails comes and goes - I am diligent with the L-glutatmine and B vitamins and L-carnitine, and I am going to take ice with me on Friday to put on my fingers and feet - I will do anything to help prevent neuropathy. 

    I am definitely feeling much better this week than last - next time I am going to be more proactive with the pain meds.

  • PeggySull
    PeggySull Member Posts: 368
    edited January 2013

    Adagio, this event I started to feel a little numbness in my fingers. Drat! Taking B-6 and Glutamine. Hope it doesn't get worse.



    Really bad bone pain below the waist late afternoon today.



    I guess I'm just so glad not to feel nauseous I got giddy!



    Let me know about your treatment on Friday and afterwards.



    Peggy

  • CelineFlower
    CelineFlower Member Posts: 145
    edited January 2013

    5 MORE TO GO!!!

    found out yesterdays in also have LCIS in my healthy breast...im so fucking angry today....

    goddamn cancer i hate this i hate this i hate his...

    ok sorry so the rant...

    looks more and more like im going to ask for a DMX ... but they r still pushing for LX....

    i made cookies and brought them to staff/volunteers/patients to oncology yesterday. all tied up with purple ribbons..

    it was great to make ppl happy

    no major issues... good blood return with port so no need for the clot treatment...

    got a dieuretic for the water retention... and another drug to try for these headaches ...which get really unbearable by 4-5

    neuropathy has started but very mild..

    While in the 3d real world waiting room , we met another family who was there for the chemo info session, and they asked us if they could ask us questions about tx etc..

    it was great to answer questions and be so helpful.... made me feel goood! i think it did for them to... gave them my email and the bco addy..

    Saw my Onc yesterday.. you know im not that fond of him...hes nice, but not a very high social ability.. kinda shy i guess in an odd way.. but when i mentioned that to my family doc he said "know one ever likes their Onc" and he went on to explain how they are the "nerds" , the "techies" in this battle... and right away i could see why my onc is like that...

    well its 2am... i cant sleep.... and i have a whole new cancer to research... hope you all have comfortable days and dont forget to ride the purple bubble ;)

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2013

    Celine Flower, I have LCIS too - not seen in the biopsy, but there in the path report after lumpectomy. I don't know what choice I would have made had I known about the LCIS before my surgery. what really makes me mad is that after surgery, neither the surgeon nor the MO even mentioned it to me! I didn't know anythig and depended on them to explain the path report to me. A few weeks later, after I knew more from reading these boards, I happened to look at my path report again and there it was. I don't think the docs want to deal with it because not that much is known about it.

  • CelineFlower
    CelineFlower Member Posts: 145
    edited January 2013

    I agree 100%

    ". I don't think the docs want to deal with it because not that much is known about it."

    This IMO has to stop...We as patients are not as ignorant as we were 100 years ago... or even 50 years ago.

    It seems to me the medical world sees us as children in a sense ..

    I believe not only our treatments but our future can only be bettered by dismateling the old school manner in which these doctors treat us .

    I know i am generalising and there are some out there who "do it right" but imo this isnt enough. 

    I know as well that some people do not wish to know, and thats a personal choice, but it should be explained to them that their involvement can only better their chances.

    I would like to see one day all patients who have a chronic illness be given the choice to take a "course" in how to be a patient... how to deal with adminstrative/insurrance issues..... as well as how to understand pathology reports etc.

    if a patient comes to appointements better educated, it will reduce the time the doc needs to spend with each patients and bring clarity to the whole plan for all involved...

    Not only do we as patients need to be heard.. but we need to listen as well

  • mfml
    mfml Member Posts: 14
    edited January 2013

    This board is so informative - thank you all for posting it is really helpful like people like me about to get started on taxol.  So - I start taxol tomorrow and have decided to do the weekly.  I have another question for you all - about the glutamine powder and B6.  I have 25 mg "co-enzymated" B6 that dissolve under your toungue - I guess I will spread 3 of those throughout the day - sounds like most of your docs have recommended somewhere between 50 and 100 mg/day?  But on the l-glutamine - I bought these 500 mg capsules... but it sounds like people are taking GRAMS of it though - in powder form??  My MO hasn't really pushed the glutamine - so she can't advise me - but I figure it can't hurt.  Can some of you share with me the amounts your docs recommended to minimize neuropathy??  And what do you do... mix it with water or juice or something and drink in one go??  Do you just take the b6 and l-glutamine  every day through the whole chemo?  Or just in the few days following? Do you skip it on chemo days??   I am sure there are posts on this somewhere on this site - but I can't find them and I would REALLY appreciate any specifics any of you can offer.  I want to have everything I need ready to go when I start the taxol tomorrow!  

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    mfml - my chemo nurse recommended 100 mg of B6 per day, but I know some people are taking 200 mg per day (I don't know if all at once or in 2 doses).

    Regarding the glutamine, my chemo nurse recommended 30 grams per day (which would be 60 of the 500 mg capsules!).  I too bought the capsules before I knew how much I was going to need to take, and I did use them up.  Undecided  The nurse gave me some 30 gram packets of GlutaSolv, which is a brand of the glutamine powder, to try.  When I had used them up I couldn't find them at Walgreens although they said they could order them for me - but the minimum quantity seemed like more than I wanted, so I just went to GNC and bought their powder.  The written protocol given to me by the chemo nurse recommended dividing up the 30 grams into 2 or 3 doses per day.  I did 2 per day.  It doesn't really dissolve, it just "suspends" in whatever you mix it in.  I tried water and various flavored things, and ended up mixing it in about 8 oz. of Crystal Lite iced tea with lemon.  I had to keep stirring as I drank it; otherwise the grit all goes to the bottom of the glass.

    I actually didn't start with the B6 and glutamine until I started feeling a little tingling in my feet, which was about the 4th week of Taxol.  For me the tingling was pretty minimal, and I ended up taking the B6 every day, but the glutamine only on the day of chemo and the 3 following days.   If you get tingling (or worse) that continues, then keep using the glutamine.

    My chemo nurse suggested continuing to take the glutamine for 3 or 4 weeks after finishing chemo, but I didn't think I needed it so I stopped it after my usual 3 days after Taxol #12.  Wouldn't you know, a few weeks later I noticed I had a numb big toe.  I've started up on the B6 again but haven't gotten back to the glutamine.  I keep hoping the numbness will go away!  (I'm now 8 weeks PFC.)

    Good luck as you start the next 12 weeks! 

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    My mo said to take 100 mg of B6 twice a day. I'm taking Glutamine but he had no opinion on that so I'm flying blind here.



    Peggy

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    I haven't had any signs of nueropathy yet, so I haven't tried anything.  Both the MO and NP said 100mg of B6 was okay, neither had an opinion on glutamine.  I figure I will cross that bridge when I get there. 

    Taxol three today.  No premeds, and it went good.  I am tired tonight and not really hungry.  I was hungry when I got home around noon and did eat then. 

    I didn't not loose all of my hair from AC, I would say 98% of it went, however, I think I may be  starting to sprout something. 

    Wishing everyone a great weekend!

  • 5thSib
    5thSib Member Posts: 119
    edited February 2013

    My MO told me that weekly Taxol was much easier to tolerate -- end up with the same total amount either way, but smaller amount at a time is just easier on body.

    First treatment was last Thursday and the last three days I had felt pretty good and actually went to work instead of working from home. I can pretty much keep to myself and everyone at work knows to stay away if they are sick or have sick kids. I carry a Lysol wipe with me to wipe things before I touch it because with my AC, white counts were always down.

    Had my 2nd treatment today. It went much quicker since they didn't have to do the slow drip and BP checks every 15 minutes. I've been sleepy from the Benedryl, but haven't felt too bad. SE's so far -- eyes running (which they have been all week), blurry vision, restless legs, slight headache. I hope I don't get the red flush again tomorrow like I did last week. Normally, I would plan to work from home tomorrow, but I have a new employee starting tomorrow, so I have to go in. NP said that blood counts looked good today, but I still needed to be careful getting around people because there is just too much stuff going around right now.

  • timbek2
    timbek2 Member Posts: 64
    edited February 2013

    Finished my final taxol yesterday! Face bright red today but last steroid flush to endure. Dressed in pink. Got a diploma and rang the bell. It was such an awesome feeling to finish. You can do it too!!!!! Now I'm ready to start the recovery process. Time to gt on that treadmill. Good luck all! We are fighters!!!!! Keep fighting!!

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Wonderful Timbek!!1 I know how happy you were to ring that bell!

    Hope you feel better with each passing day. I have my BMX and direct to implant surgery on Tuesday. I will be about 6 weeks out from PFC.

  • Mermaidia
    Mermaidia Member Posts: 12
    edited February 2013

    Yay Timbek2!!!  The clinic that I go to for chemo gives each women a tiara to wear for her last treatment....so cool!!

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    Hi everyone,

    I'm just doing the weekly taxol with herceptin...... is there anyone else out there doing that?? I'm curious how things go if you don't start with the more aggressive stuff...

    Since I fell in the "consider" chemo group (rather then the "recommend" group) I chickened out of doing the more serious chemo's...... and although I'm on the 12 week plan I'm just taking it one week at a time (3 down)....

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Hi jayjayc.  Looks like our "statistics" are almost the same.  I was in the "consider" chemo group too, and after reading more about this disease and especially HER2, I'm glad I did it.  If you look back a page or two, you'll see some others who are about to start or just recently started doing weekly taxol with herceptin with no prior chemos.  I finished up my taxol/herceptin on December 7.  I responded on another board to Macho-Mouse's question about it, and I'm copying it here:  Yes, I had weekly Taxol and Herceptin with no prior chemo.  For me it was pretty easy.  I had no nausea, no taste issues, (almost) no fatigue, I never needed anything to boost my blood counts (my hemoglobin and red blood cells were lower than normal but not in a danger zone, and my white blood cells remained normal throughout).  I did have either constipation or diarrhea throughout, so I was always taking something over the counter for one or the other.  Tongue Out  I got the doctor to reduce the amount of steroid in my pre-meds, and after that I was able to sleep better.  I did develop some mild neuropathy in my feet, but took vitamin B6 and L-Glutamine (OK'd by doc) to counteract and it never got bad.  I craved carbs - and ate them - and gained about 12 pounds, which are not magically going away now that I'm finished with chemo.  Something noone ever mentioned to me - the steroid causes your face to flush the day after chemo.  I was all worried I had a fever or something - don't know why noone ever mentioned that to me.  I looked very healthy that day each week!  I worked throughout, just taking off the day of chemo and arriving late to work some days when I couldn't leave the bathroom...Tongue Out  I did cold caps to save my hair, but I think some getting weekly Taxol don't lose their hair but just have some thinning.  I'll be interested to hear your experience with that.  You will do fine!

    I would add a couple more comments to that: I seemed to have a stuffy nose most of the time (except on treatment days when I had Benadryl in my pre-meds!), and when I blew my nose it was usually a bit bloody.  I never had an actual nosebleed though.  And I did get out of breath easily when going up stairs.  I was able to walk just fine, but stairs were a problem.  I was afraid that it was because of Herceptin-caused heart damage, but my post chemo echocardiogram was just fine.

  • Leamitch7
    Leamitch7 Member Posts: 5
    edited February 2013

    Jayjayc I have a similar dx as you. I doing 12 rounds of taxol/herceptin. Number 5 was today. I started losing my hair on no. 4 still have enough to cover my head but it's starting to really thin. No neuropathy, I do take 100 mg b6. No nausea. My nose runs all the time, most of the time it's bloody. I occasionally need Imodium. I don't receive steroids anymore so the closet cleaning weekends have ended. I am returning to work on tues. Even though I'm fighting fatigue most the time I do feel up to going back. It's nice to talk to others in the "consider" group.

  • Macho-Mouse
    Macho-Mouse Member Posts: 19
    edited February 2013

    Jayjayc - I can't report much now but I start weekly Taxol\Herceptin on Tuesday :/ I have been prep'n my body trying to get healthy and raise certain vitamin deficiences I have... Til Tues *gulp*

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    hi,



    To patinmn, leamitch7, and macho-mouse nice to meet you and thank you so much for responding...... I've been worried that i was the only "consider" that was stupid enough to choose chemo....... it was a REALLY hard decision because I lost my dad to chemo induced liver failure......... so to say i was scared would be an understatement...... i actually sat in my car on the day of my first treatment thinking about backing out..... but i pulled out my "decision tool" (which put me at 22% recurrent risk) and gave myself a stern talking to (i.e. not doing something just because you're afraid is stupid, etc. etc.)



    The actual treatment wasn't bad once they got started (and don't they understand how scared we are....... and making us wait is just WRONG)......



    I've given my self the one treatment at a time talk..... so I don't think about 12 I just think about the next one....... I'm done with 3 so far...... this whole process has been really strange for me...... i went from a routine mammo to my lumpectomy surgery in three weeks....... and was feeling like it was over..... so now dealing with chemo and then radiation makes me think how naive i was ..... this might never be over....



    you guys seem to have a lot more information then i do in terms of preventing SEs.... i didn't know about B6 and l-glutamine..... are they both for the numbness??



    so far i haven't had any major se's........ except starting last sunday the hair started going bye bye....... still have some but it's really thin..... got my wig today..... i HATE being stared at and getting false sympathy so i've been trying to keep things really private at work (only my boss and a few others know)....... so far I've been able to work almost a normal schedule.....



    in terms of se's you guys have made me feel soooooooo much better (and dare i say almost normal)...... my nose has been stuffy/running and every morning i blow red blood...... and no one ever mentioned that as a side effect......



    now of course i have a few more questions for you..... did it burn when you peed?? I thought i had a uti after my first treatment because it burned for a couple of days..... but i was checked and everything was fine...... and i had the same issue after my other treatments.......



    and did anyone'e teeth ache....... that probably sounds a little weird but mine ache a little now...... it might be related to dry mouth but i'm drinking lots and using biotene.....



    and final question (at least for now ;-) do the blood counts just keep going down every week...... i'm still normal ( at least in terms of blood counts) but the white and red have gone down alittle each week........ and the platlets have gone up (???)



    again thank you all......... i wouldn't wish this journey on anyone but not being alone makes it so much more bearable....

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Jayjayc, I'm so sorry about your dad. That must have made your decision much more difficult. I hear you on the keeping it private at work thing. I told the attorneys I work with, the other paralegals in my section, and my secretary. of course word spread to some others, but still most people in my office of 100+ have no idea.



    I did have some burning on peeing - more on the outside than the inside. (Sorry, TMI). Only for the first couple days after chemo. I drank a ton of water on chemo days, so maybe it helped to dilute... No tooth aching for me. My blood counts went down for the first few weeks but then stabilized within a range.

  • Leamitch7
    Leamitch7 Member Posts: 5
    edited February 2013

    Patin, I had the peeing thing also. MO put me on cipro. It cleared up but, I tested negative for a uti. So who knows. Sometimes my teeth ache and since chemo they never feel clean no matter how much I brush and floss.



    I've been the opposite of private, it's just who I am. But, my employer has used the info against me. First trying to keep me from returning to work, then moving me to a menial position, so being more private is something I should try.



    I'll be thinking of you all this week :)

  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 124
    edited February 2013

    jayjayc

           We have the same pathology, ER-, PR-, Her2+.  I had 4 A/C tx's prior to the taxol/herceptin, 12 also. I will be on #10 this Tuesday.  I haven't had too many problems on taxol.  Nothing compared to A/C, which was awful.  I will be continuing on herceptin every 3 weeks after my surgery in about 6 weeks.  Has that been recommended for you?      

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    Hi, I started taxol dose dense on Monday. The bone pain started Tuesday night. Although the pain is less now it is still there. Also, I'm very puffy.



    Anyone experience these side effects?



    Peggy

  • adagio
    adagio Member Posts: 713
    edited February 2013

    Peggy - yes, I got the bone pain quite badly - needed to take pain meds - I took 2extra strength tylenol and 1 extrastrength ibuprofen which worked well for me.

    I had Taxol #2 yesterday and my worst fear was realized - I had an allergic reaction which was terrifying - shortness of breath, tightness and heaviness in the chest, flushing of the face and neck, rapid heart beat then sudden back pain. They had to call for a doctor and they pumped more Benadryl and Steroids into me - everything was such a blur and not something I would like to repeat. I did finish the infusion at an exceedingly slow rate - I was there for about 6 hours. Would not wish this on any one at all. This was so unexpected especially since taxol #1 went just fine. So heads up for everyone out there. Forunately today I feel just fine - but it was very scary indeed.

    Has anyone on here had an allergic reaction to Taxol?

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    waitingforthenextstep,



    yes i've been told to do herciptin every three weeks for a year once i get done with the 12 weekly taxol/herciptin....... that's also when i get to start 6-7 weeks of radiation..... but i try not to think about that because it makes me feel like i'll never be done with this..... looks like you were much braver then me by doing the AC first...... your're obviously a strong lady........ but you haven't had surgery yet???



    i've only had 3 taxol/hercip treatments and needed a nap today after going to lunch, wal-mart and vacuming......



  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    leamitch7,



    YOUR BOSS TRIED TO USE YOUR CANCER AGAINST YOU......... NO FREAKING WAY!!!!!!! I'm truly in shock over that...... in fact I'm at a loss for words...



    Do you want me to beat them up for you........ but it would have to be soon while I still have the energy

  • Macho-Mouse
    Macho-Mouse Member Posts: 19
    edited February 2013

    *lol* jayjayc *lol* While you're at it! I have a few ppl that could use a good arse beating too ;)

  • Leamitch7
    Leamitch7 Member Posts: 5
    edited February 2013

    Yep, she has tried to keep me from returning to work. We can put her on the list, along with my ex husband of people that needed "a good arse beating" lol

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Adagio I am sorry you had a bad reaction to taxol. Wow your effects during chemo had to be terrifying.

    I had landed in the hospital after my first AC for 4 days. They cut my dosage and change it from dose dense to every 3 weeks. And hydrated me the day after chemo for the 3 other rounds.

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    and your boss is a woman!?!? does she think she can "catch" bc.......



    i'm really sorry that anyone would be like that...... i guess i've been really lucky because everyone i've told has been really awesome even offering to drive me if needed..... i'm single and very independent so i've been doing it all on my own so far so good...... i didn't even tell my mom until i had the actual DX...... didn't want to make her suffer through the wait like i did......



    the only people issue i've had is when they want to share their horror stories or want details when i'm in one of my "not thinking about this right now" moods.....

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