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All about Xeloda

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Comments

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Jac53



    That is wonderful!!!!



    LL

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    awesome news!  my first scans since starting on Xeloda are Monday....I want the same results!  

    Hugs!

    Robin

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    Party like a rock star. Congratulations!!

  • Jac53
    Jac53 Member Posts: 58
    edited November 2012

    Thanks all!!!  Started cycle 7 today.  Fingers crossed for next time too but I'm making the most of this big positive.

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Great news Jac53

  • dormouse72
    dormouse72 Member Posts: 21
    edited November 2012

    Hello Ladies

    I had my first "real" scans since diagnosis last April and starting X in May ( had a set in July but those were really to see if my onc should increase my dose).  Well, "things are getting smaller and hot spots - in my lungs - are less hot".  I didn't ask for specifics, like how my ch smaller, but I never thought the words "You are less hot" would ever sound so good!!!  I was terrified they would tell me it wasn't working.  I'm glad to hear others are also having a good response.

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    loving all these good news posts!  Congrats Dormouse!

    Hugs!

    Robin

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Wow - Dormouse! So happy for you...(you "non-hot" girl, you!!!).



    I would like to shun my hotness as well! LOL! I start round 2 today of X. 1000mg 2ce a day - 2 weeks on, 1 off.



    I did have constipation on it the first go around, and fatigue. Looking back, I did have a very hard time concentrating on work the first week, but I'm not sure if that was all the drug, or partly my mental state still from the shock of it all.



    I feel my lower back pain has diminished greatly, but I'm thinking that's the Tamoxifen (hopefully). It's really amazing to me the change in how my back feels after only 1 month.



    If I notice the heavy fatigue with the total lack of desire/motivation/ability to try to concentrate on work, I am definitely asking for Ritalin on my 12/9 appt.!!! I cannot screw up my job! Though I don't want to scare anyone who may be reading this about to start X.



    For me, the fatigue with X is NOTHING like what it was with AC/Taxol. Not even in the same universe. This is a very tolerable chemo, and I am so thankful that the hair is spared. I am so hoping for good scans in Jan so that I can keep my hair for a while longer. I know it sounds petty in the grand scheme of things, but there you have it.

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    dormouse72 - great news, hope you continue to get such good results.

    Liz - know just what you mean about how much you want to keep your hair. Mine is still short from FEC-T, but hoping to get it into a bob over next few months and will feel I look more like myself again.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Gail,

    It's amazing how much our hair can 'make us or break us'.



    I would get myself a pedicure, but now I'm totally paranoid about picking up some fungal thing, or bacterial thing from the salon - so no go on that. But I would so love the foot/leg massage, and to sit in the massaging chair.



    LL

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    The fatigue gets better. I had it the first couple of rounds but then it went away. I don't quite feel myself the first couple of days of my second week. Hard time concentrating. Bust it goes away after a few days. I think I'm getting neuropathy. The tip of my right thumb feels numb and has for several weeks now. I stopped this round a couple of days into my second week so I could heal from DMX. I'm surprised my thumb is still feeling numb after I've been off for a week now. I also find that I will wake in the night and the last two fingers of my right hand have fallen asleep. Feels different from my thumb. I hope the thumb thing goes away before I have to start again.

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Frapp - my fingertips all get a bit numb. I had 2 extra weeks off to let my hands/feet recover and also blood counts were low and only really felt better towards the end. I'm not so bad on the lower dose but as always seem worse on the week off will have to wait till next week to see if it continues.

  • braids3
    braids3 Member Posts: 131
    edited November 2012

    i have the numbness as well also fatigue  seems worse could it be the tykerb? go in for mri next week to check brain hope everyone  had  a great Thanksgiving love  and blessings

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Well, only on day 3 of the 2nd cycle, and yesterday I felt like I had rocks in my stomach all day yesterday and today. I fear that it won't go away. This is new - didn't feel that during the first cycle at all. Eating doesn't help it (and can make it worse if I eat more than a little bit). The constipation is already hitting in a more intense way than it did the first round. I tried the Senekot over the counter stuff that the doc's office recommended, but I don't think it has any effect at all.

    No neuropathy yet. No fatigue yet either this time so far...but I bet it will hit week two as you've all said. I actually felt the best yesterday and today in terms of being rested and able to concentrate and function than I've felt since this whole mess started in October. 

  • Chickadee
    Chickadee Member Posts: 469
    edited November 2012

    I'm totally weirded out. I realized quite suddenly that the feeling in my fingertips returned. For so long they felt like after you accidentally burn your finger. Kind of flat and deadened.



    Now they feel quite "normal". Dare I say that. My feet aren't near as dry as they were. Neither are my palms.



    Seems like a paradigm shift and I desperately hope that X is still working.



    Isn't it dumb how we think this stuff is only working if we are miserable.



    Anyway I feel downright normal and hope to hang on to it for a good long while.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    So glad that you have the feeling back! Hope it lasts for sure!

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Ladies -

    I've been on Tamoxifen for 1 month, and just started the 2nd cycle of X. I'm 46, and per bloodwork a month ago, no where near menopause hormonally. Always get my period like clockwork...I should've gotten my period last Thursday, and as of yet have zero sign of it. Haven't gained the normal 2 lbs. that I always gain (then lose), not the faintest iota of a cramp or anything at all...do you suppose it's possible that the X stopped my period?? When I had AC/Taxol 12 yrs. ago, I never stopped getting my period. Took Tamox for 5 years after initial tx, and never stopped getting my period. There is zero chance I'm pg, so this is really weird to me...thoughts?

    Thanks so much!

    LL

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    Sorry, can't help you with that one. I had a hysterectomy 4 yrs ago.

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Thanks, Frapp! I asked the onc for an ooph right away last month, and he wasn't too thrilled with the idea. Maybe he knew what he was doing after all!

  • mnmom3
    mnmom3 Member Posts: 11
    edited November 2012

    I was on Xeloda in 2010, it stopped my periods haven't had one since. My blood work shows I am in menopause.



    Marsha

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Mnmom3 -

    Wow - thanks so much for sharing that. Did it happen right away? Or did it take a few cycles?



    Thanks so much!

    LL

  • mnmom3
    mnmom3 Member Posts: 11
    edited November 2012

    It was during the second dose I was 14days on, 7 off.



    I am back on Xeloda with Tykerb that has been a little harder, the fatigue is getting me down.

    I lived in Houston, from 1981-1989 sure miss the weather, it was really cold in Minnesota today.



    Marsha

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Marsha - I'm originally from Chicago - no where near as cold as MN - but it's why I moved south, so I understand! I do miss the Midwest, but I do love the more temperate weather here!



    I have read on these boards that Tykerb can really add to the fatigue...finally the rocks in my stomach have disappeared for now.



    The thought of this possibly being chemo-pause, is kind of surprising. I wasn't expecting it so quickly..but, if this is what it is, then that's a good thing due to my ER+ status. Though the thought of menopause with no help from hormone replacement has always scared the heck out of me. Maybe, all things considered it won't be as bad as everything I've already been through. I can only hope.



    LL

  • mnmom3
    mnmom3 Member Posts: 11
    edited November 2012

    I didn't really notice the menopause, just hot flashes, but that could have been the chemo and everything else they throw at us. You have been through a lot. Hopefully if it is menopause it will go easy for you.



    Marsha

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Liz - good to hear you're feeling better. FEC-T stopped my periods and haven't had a proper one since. I expect it is the X that has stopped yours as I think it's possible with all chemos. May be related to you being on both X and Tamox at the same time.

    Marsha - It's a bit chilly in Edinburgh just now, but probably not nearly as bad as Minnesota.

  • mnmom3
    mnmom3 Member Posts: 11
    edited November 2012

    Gail, I bet it is cold in Scotland, I always wanted to go there. My grandmother was a McDonald, and very proud of her Scottish heritage. Woke up today and it was 10 degrees.



    Marsha

  • LizLemon
    LizLemon Member Posts: 191
    edited November 2012

    Well - after all that, old "Aunt Flo" showed up after all today! Geez! Guess I freaked out for nothing...at least for now. 

  • gail5
    gail5 Member Posts: 125
    edited November 2012

    Marsha - that's really cold, I'm assuming that's in Fahrenheit. It's about 6 Celsius here, checked a converter and that works out about 42 Fahrenheit. At least it's sunny here too just now.

    Liz - not sure if it's good news or not but you sound relieved so guessing it's good.

  • RobinNY
    RobinNY Member Posts: 136
    edited November 2012

    Hi Girls

    Well, my first scans after starting X were Monday....now the waiting begins. I did get alot of Cyber Monday shopping done in between scans! lol   Onc appointment is next Thursday, but the hospital will fax the results as soon as they are signed off by the Dr. who reads them.  

    Starting Zemota next week....any SE with it?  I don't recall anyone really complaining about it.

    Hugs!

    Robin

  • Frapp
    Frapp Member Posts: 343
    edited November 2012

    Robin, the first dose of zometa can feel a bit like the flu coming on about 3 days after the infusion. Ask them to be sure to infuse it over 30 mins, not the usual 15 and I also ask to have the whole saline bag for hydration. They're just going to throw it away anyway. I only had the se at the first infusion and didn't have it at any thereafter.

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