Starting Chemo Aug 09

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  • Karen09
    Karen09 Member Posts: 320
    edited January 2010

    Thanks Weety.  I'm going to make some calls on Monday and see how much it would cost to get the Zometa.  I would much rather have that one from the other medication in the study and it's a 50-50 shot in the study.  If I can afford the Zometa I'll probably just ask to be prescribed that too.

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Jenn -- Hang in there, the neuropathy will ABATE soon and I know how you feel.  I was so pissed it lasted (and seemed to get worse, even) for a two to three weeks at least after I finished TX but now it's been about 8 weeks and I'm finding the SEs are pretty much gone (except for the STILL complete lack of new hair growth on my head).  Get ready for your eyebrows and eyelashes to fall out (if they haven't already).  I finished TX November 9 and the week after Thanksgiving I noticed my eyebrows and lashes falling out... which continued steadily for a few weeks.  Happy to report, though, that both are growing in again.  Can't figure out why I still have no sign of new hair on my head though (such a bummer)!

    Karen -- WOOOOOOOOOHOOOOOOOOO!!!!  Even though the SEs will likely continue for a few weeks you are done, girl, done!

    Happy New Year to all!

    xo

    Lilah

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Lilah - My eyebrows and lashes fell out almost as soon as I started Taxol, but my hair started growing back............so weird.  I read somewhere along the way that the neuropathy can actually get worse before it gets better.  Ugh!!  I'm 2 weeks PFC and I am a little better in that I can go most of the day w/o medication. I'm hoping it continues down that road.

    I'm finally going back to work "offically" on Monday.  I am both nervous and excited.  We're required to do some annual testing and I was behind on a few of the test.  I took them last week and realized I still have some working brain cells.  Whoo Hoo.............. 

    Happy Saturday!!!

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Jenn -- so glad you are feeling better!  I found the first Taxol to be horrific; but was better prepared for the subsequent ones (drank tons of water, took advil BEFORE the bad pain started -- which was always 2 days after treatment, etc).  It still got worse each time... but about 3 weeks after I was done I noticed a definite lift of most pain (so I wish that for you).  Now at almost 8 weeks I am even rid of the trace feeling of discomfort I still had in my toes. 

    Of course you have working brain cells!  You are always so smart here; that's what BCO does for ya, keeps you on your toes :)  GOOD LUCK with starting work on Monday -- you rock!

    xo

    Lilah

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    I have a question for those of you who have recently finished chemo--

    Did you notice a huge drop in hot flashes once done or did they continue?  I am just 3 weeks PFC, but am noticing that the terrible hot flashes aren't waking me up every hour at night anymore.  I still have a few, but nothing compared to what it was.  Does that mean my ovaries are already waking up and I'm already flooding this stupid cancer with a bunch of estrogen for it to start feeding on?  Holy moly, I hate having to worry about every little thing!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Weety - My hotflashes have gotten much better. Before ending chemo I had noticed a pattern.  The hotflashes were much, much worse with the steroids in my system.  Day 1 - 4 I'd have terrible hotflashes, they would start to get better, then chemo.  My onc said that the chemo would put me in chemopause, but it was possible that I would not "officially go through menopause and have to do this all over again.  Ugh!  So the answer is yes, ovaries may be awake.  Because I'm triple negative I haven't done a lot of research on the medications that most women take after finishing chemo, but I'm guessing that your onc will put you on something will shut down the estrogen such as tamoxifen.

    Lilah - you always give me the boost I need - thank you.  I am worried after not being at work for so long.   Luckily I work with a wonderful group and I know they will support me and help me get my feet back on the ground and I have a great boss!  How have you been feeling?  Have you had any more fills since we last spoke?

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  • msmpatty
    msmpatty Member Posts: 818
    edited January 2010

    Jenn - my hair experience is exactly like yours.   Once I finished AC and started the weekly Taxol my lashes and brows disappeared but my hair started growing.    The hair started about a month ago and I'm really surprised by how much of it there is!  It is a mixture of pure white and a drab browny-grey, but it pretty much covers my whole head and is about 1/2" long.  Lashes are in but straggly, brows....still gone.   Good luck starting work tomorrow!   Once you get into the routine I think you'll be glad to be back working.   I've worked throughout chemo and it is one area of my life that has remained "normal".    I'll bet your dogs will miss their long walks, though!

    Lilah - It is good to hear that your pain is subsiding!   I know you and Jenn had big pain problems on the Taxol and my heart goes out to you.   I've been really lucky...Taxol #9 this week and so far no pain and only minor intermittent numbness in my fingers.   The worst SE is just the fatigue which hits big on day 3 and then gets better until time for another TX.  

    Weety - I agree with Jenn that some of the hot flash problems are steriod related.   Are you going to be taking Tamoxifen or Femara?   I'm slated for Tamoxifen after I finish rads.  I read something interesting that Tamoxifen does not stop your body from producing estrogen, it simply binds with breast tissue cells before the estrogen does so the estrogen can't get in and promote cancer growth (okay...that's my layman's explanation).  Because it doesn't effect other types of cells it may actually help prevent osteoporosis.

    Have a great week ladies!

    Patty

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Well today I finally made out to walk with the dogs again.  I hadn't walked in about 3 weeks due to the Taxol pain, but I noticed yesterday that the pain wasn't terrible and this morning when I woke up it seemed better so I decided to go for a walk.  I was into it about 20 minutes when it got uncomfortable, headed for home so............... I made it for 30 minutes.  Whoo Hoo!!! 

    Patty - I am so glad to hear you're not having trouble with Taxol other than the fatigue.  Although the fatigue can be frustrating when you have things to do.

    Hope everyone had a wonderful weekend.

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Jenn -- I don't remember my last report but I will say fill #2 (putting me up to 360cc's which is probably half way there) has been more uncomfortable than #1... but it's still manageable.  Glad I could cheer you!  I think you will find that being at work and back in the old swing of things will make you feel good :)   And btw, I'm so glad the pain was less today!  30 minutes is awesome!  I understand that the more you can move, the better off you are anyway with the SEs.

    Patty -- yay for you not having pain on the Taxol! 

    Cheers,

    Lilah

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  • Karen09
    Karen09 Member Posts: 320
    edited January 2010

    Jenn - so glad your pain wasn't as bad yesterday!!  Good luck at work today!  I'm sure you'll do great!

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  • Karen09
    Karen09 Member Posts: 320
    edited January 2010

    My hair situation is similar to you ladies too.  It's very very short but it's there!  :)  It started to come back in when I started Taxotere.  My eyelashes are gone but at least my leg hair hasn't started to come back in yet.  lol!

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  • YoYo44
    YoYo44 Member Posts: 203
    edited January 2010

    Hi ladies,

    Happy New years!  Health, Happiness and Joy for 2010!

    Congrats on going back to work Jenn! Hope you had a great day(by the time you read this).  Going to work is good because you can focus on being YOU and not the cancer patient.  But I am sure it will be tiring at first so take it easy.  Jenn, 2 months out of Taxol I am not experiencing any neuropathy anymore, although my feet get a little more sore than they used to.  So the end is in sight!

    Interesting news about the trial Karen.  I will be curious to hear the cost off label. Good luck.

    I am having hotflashes too but that is because I am on Zoladex which actually stops extrogen production.  You are right that Tamoxifen only mops up extrogen in your body but does not stop it's production.  Even if your ovaries do not make estrogen your fat cells make some too so you will have minimal amounts of extrogen.  Not sure how much is really needed to prevent osteoporesis.  But I guess that is where Zometa and the other bone drugs come in.

    I am not sure what is going on yet. My usual situation!!  I see the onc Jan 14 and it might be the resumption of chemo.  Will make some calls to find out what is the scoop.  I am not sure when I go back to work yet, although the insurance company says Jan 17 and my docs said indefinite.  I guess we will see what the 17th brings!  I also have the next fill Jan 13, I guess the race is on now to get me expanded before radiation.  Should be fun...

    Have a great day ladies!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    I went to work today until noon, then ran an errand and headed home. I felt fine, wasn't tired, but as soon as I sat down on the sofa I fell asleep.  It did feel good to get back to the office and because I have been visiting often it wasn't an overwhelming feeling of explaining everything over and over. 

    Lilah - Sorry to hear the second fill was a little more uncomfortable.  How often do you have to get fills? 

    YoYo - More chemo - ugh!  I'm sorry to hear that.  I hope that the insurance company works with you so that you don't have to go back to work before you're ready.

    Karen - the hair will come..... the hair will come........

    Have a great afternoon.

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Jenn -- that is great about work!  Nice to start with a half day - perfect in fact!

    I saw my PS today for what was to be my third fill but she thinks I have an infection, so instead I got prescription for antibiotics.  I am not happy but hoping that the pills work (if they don't I have to go to the hospital for IV antibiotics -- ugh).  So prayers please ladies!  I think maybe that is why the second fill was more uncomfortable.  The skin on the lower half of my breast was red (that's why she thinks it could be an infection).  Have to stop it fast because if it makes it's way from skin to deeper where the TE is there can be complications (which I neither want to know nor speculate on at this point).

    It's always something.

    Karen -- I'm 8 weeks PFC and am JUST starting to notice a change in my bald headedness... a sort of sandpapery feeling all over my head.  Close examination shows tiny hairs are indeed sprouting.  I think everyone's hair grows at a different rate but everyone's hair DOES grow.

    Cheers,

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited January 2010

    It's so nice to hear from everyone!

    Jenn - Good news on your first day of work!  I'm not surprised you needed a nap.  I've been going to bed at 8:00pm since starting chemo.  I usually read for an hour but I've been getting at least 10-hours of solid sleep every night and I still need a nap on some days.  What a baby I am!

    Karen - Even very short hair is hair, right?   My leg hair is back but it is really sparse and soft and completely white so I'm just leaving it alone.  Underarms still nice and hairless...which I like.   What I'm not liking so much is my lack of eyebrows and the fact that my lashes keep coming and going.

    Lilah - Sorry to hear about the infection.  Gosh if it is not one thing it's another. I'm keeping my fingers crossed that the antibiotics work and there are no further problems.   I was looking back through my chemo journal last night and I first saw hair growth 10-weeks after my last AC TX.  Once I saw the little sprouts it seems to have come in quickly.   I noticed the sprouts in early December and now my whole head is covered with somewhere between 1/4 and 1/2 inch.  

    YoYo - I laughed at your comment that Tamoxifen "mops up" the estrogen...but that is a perfect description!   I'm sending positive thoughts your way for NO MORE CHEMO and that you can get all the fills you need before radiation.    Hopefully your insurance company will see fit to let you heal before going back to work!

    Now that school is back in session and work is back to normal I'm already missing the more leisurely pace of the past couple of holiday weeks.  I've noticed the Taxol is taking its toll on my energy more and more..but just four more weeks to go!

    Patty

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Went to work again this morning, got a little more done.  I opened my supply drawer and noticed that it was almost empty so I ordered more supplies, then headed home.  I walked yesterday for 30 minutes and am going to try to get in another 30 minutes today - trying to get my routine back.  My feet still bother me, but nothing like before and the sharp pains in the legs are all but gone now. 

    Lilah - I am so sorry you have an infection.  What a mess!!!  It seems like we go from one appt, medication or surgery to another............................  (((HUGS))) I hope the anitbiotics work and you feel better soon.

    Patty - Remember the Taxol SE's are cumalitive, rest when you need it and don't feel guilty. I'm just getting back to work, so they're still being a little easy on me, but I'm sure once the hectic pace starts I'll be coming home and hitting the bed earlier.  Guess we'll have to record our favorite shows for a while :).

    Hope everyone has a great afternoon.

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  • gillyone
    gillyone Member Posts: 1,727
    edited January 2010

    Just a quick check in with you all. I had my last radiation tx on December 31 and so got to start the new year afresh!

    At 10 weeks PFC my hair has only just started growing. It looks like I have a five o'clock shadow. It did not grow at all on taxol. It seems it does for those on weekly taxol but not on DD taxol.

    Anyway I am feeling well - the weeks since chemo have made a huge difference. Ladies, it will get better!!

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Gill -- Oh now that is so good to know about the DD versus the weekly Taxol -- I had DD and hair has JUST this week started to have that 5 o'clock shadow look (just today actually) and I am 8 weeks PFC... but have seen some photos on the hair thread of others also at 8 weeks PFC with HAIR and I was starting to get worried :)  It makes sense now that you say that about hair growth on weekly taxol... since Jenn, for example, on weekly Taxol has had hair growth.  I guess the DD is just that much more toxic (wonderful). 

    Anyway -- good news that you have hair growing!!!!  Woo-hoo!!!  I am sure you're as relieved as me.

    Jenn -- sounds like work is not a source of anxiety (as you feared it might be) which is super!

    Patty -- Cool re: your hair growth!  I'm getting excited now that I've got the 5 o'clock shadow (which I noticed today for the first time after feeling the sandpaper yesterday -- so it's FAST already!  :)  I never noticed white fuzzies but it could be the hairs were just too white (or blonde even) and blended in with my head.  I can definitely see hair now.  Tiny tiny little hairs.

    Oh and I THINK there was less redness this morning... hoping to get BF to confirm tonight when he gets home (he will probably say yes even if he doesn't see it though, he's sweet that way :) -- and then hoping that tomorrow it will be maybe even NOT red (today it just seems LESS red). 

    Cheers,

    Lilah

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  • msmpatty
    msmpatty Member Posts: 818
    edited January 2010

    Lilah - Once you get the 5 o'clock shadow on your head...you are on your way.   I'm thinking that you are right about the DD versus the weekly Taxol.  You get a little less than half the dose on the weekly than you do on the bi-weekly, so it probably is just easier for your body to handle it.  Good news on the redness reduction,  bye bye infection.

    Gill - What a wonderful way to start the new year.  DONE!   Thanks for encouraging words about post-chemo recovery.  Can't wait!

    Jenn - My recorder has been working overtime for months.  It's nice, though, to have all my favorite shows waiting for me.    Good for you on getting back to your walking.   I've been doing one session a week with my personal trainer, but after my last TX the end of this month I'm going to get back to more frequent exercise routine.  

    Patty

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Work is going well.  Today they had a little more waiting for me to do, but nothing that I couldn't handle.  It feels good to have a normal routine and talk to people about stuff other than BC.  I will say that I am all but passing out by 7-8pm.  Today the pain in my feet is a little worse, but I've walked everyday for the last four days and it may be too much.  I walked 40 minutes today even though it hurt because tomorrow it's suppose to be raining and..........freezing temps so I'm sure I won't be able to get a walk in tomorrow.  We are having an entire week of freezing or near freezing temps, which is unusual for us.  The lowest in 14 years according to the paper.

    Gill - glad to hear from you and that you're doing well - it gives us all something to look forward to.

    Lilah - Whoo Hoo......... glad the infection seems to be going away.  You sure don't need a complication.

    Patty - I record almost everything that's on past 6p that I want to watch because I usually dose in and out or just fall asleep during the shows.  Then when I can't sleep in the middle of the night I catch up.

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  • YoYo44
    YoYo44 Member Posts: 203
    edited January 2010

    Hi ladies,

    Jenn, glad work is going well.  Hopefully your feet get with the program and feel better.

    Gill, so glad to hear you are done.  Yes, what a great start.

    Lilah, hope you are doing better too.  I get my second fill next wek as well, so I will be on the same wagon as you.  Hope the infection clears out fast.  I am feeling a little sore too now but am hoping it is just rib pain as I see nothing infection like.

    I heard today that I will have chemo next wek (14th) and it will prob be FEC.  Hopefully only 4x.  So I will look into what that is like and prob sign up with the january Chemo group as well.  I just want to get on with it so I can be done!!

    Take care,

    Yo

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Hey Ladies -- Yeah less red today (even less than yesterday) so I feel hopeful that when I see the doctor tomorrow she will not make me go to the hospital.  Sigh.

    Jenn -- yeah the walking you have to build back up to.  I was still finding my stamina 2 - 4 weeks PFC and feet did hurt if I walked too much.  Be patient with yourself. 

    YoYo -- so sorry you have to have more chemo... but glad it's only 4x!

    Cheers,

    Lilah

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Good afternoon - well the rain has moved in and the colder temps to follow - a good day to take a break from walking.  I've decided that I'll cook instead.  Work still the same - talked to a few more people in different departments that I hadn't talked to in a while, but nothing too exciting.

    Lilah - Love the new picture!! Glad to hear the redness is going away, that must mean the antibiotics are working.

    YoYo - Sorry you have to have more chemo - I know you didn't want to hear that. I know you said your insurance says you have to go back to work on the 17th.  I'm not the expert and don't know your work situation, but I know that with mine once I reached the 6 month mark on short term I either had to return to work or go on FMLA.  Keep us updated.

    Hope every has a great afternoon.

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    Jenn, How did you know that you only got the 6 months on disablilitya and then had to switch to FMLA?  Right now I am still on "statutory" leave at my school (I'm a teacher) and get 50% of my pay for 100 days.  After that, I thought I just had to go into the "no-pay" zone,   but maybe that is when I have to move to FMLA????????? Is every company different or is it pretty standard?  I hate having to call and ask about getting more time, because I was already just in this position the month before I was diagnosed.  I was on maternity leave, then FMLA, and then that ran out but the baby was still having lots of medical issues--thank God we think those are resolved now--but I felt like I was begging and looking for loopholes (which we did find and I got almost an extra month out of) but then I had to go back or lose my insurance and then 2 weeks later, BAM, I found out about the breast cancer!!!  Let me tell you, it's been a wild ride for me.  I am scheduled to go back Feb 1st, but I do NOT feel anywhere ready to teach kindergarten kids all day.  They take up all my energy when I'm healthy!  I don't know how I'll do it with as exhausted and run-down as I still feel.  5-year olds are not the easiest group to handle!  Plus I have 3 at home (ages 1, 6, and 8) so it's not like I can rest when I come home. . . . . . .

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  • Lilah
    Lilah Member Posts: 4,898
    edited January 2010

    Aw Weety what a story!  Sorry for all you've been through (as if having BC wasn't enough).  I have no solutions to offer but just wanted to send my sympathies.

    Jenn -- thanks re: the pic!  Laura on the Exchange City thread asked if people would do it and I'd been thinking I ought to, because I do like seeing others pics, so that pushed me over the edge.  Apparently once you add a pic it gets added in to all you previous posts!  Man I post a lot.  You notice it more when you see your pic over and over lol.

    Saw my PS today who declared herself a genius for having spotted the infection (ok well she didn't say "genius" but she was very pleased with herself and so am I, actually, as infection is BAD for implants).  I'll stay on the antibiotics now for 10 more days.  She let me have a small fill of 60 cc's so now I'm up to 420!  Hurts more.  Oh joy.  Drinking alcohol helps :)  And now that chemo is over -- I can!  Next fill is a week from Monday. 

    Cheers,

    Lilah

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  • Karen09
    Karen09 Member Posts: 320
    edited January 2010

    Hey ladies!  I hope you are all having a good day so far! 

    Jenn - congrats on going back to work!  That is exciting!  I'm glad it's going well so far and I'm so glad to hear your pain isn't as bad. 

    YoYo - oh my word!  I'm so sorry you might have to have more chemo!  That really sucks! Hugs to you! 

    Lilah - The infection doesn't sound fun but hopefully it will clear up soon!

    Gill - congrats on being done radiation!  That's great!  

    I've decided not to be part of the drug trial for the bisphosphates.  I'm so bad at making decisions but after talking with the staff on the study yesterday I think it's better for me just to ask for the Zometa off study and pay for it myself.  It costs about $600 here and I'll need 16 injections over 3 years.  Of course it's not covered by my insurance right now but my fingers are crossed that it might be sometime in the future.  When I spoke to the study nurse yesterday with my concerns about the two medications and the Zometa sounding so much better, she said that yes, Zometa has been proven to work and they are testing the others to see if they work as well.  I didn't want to take the chance that I wouldn't get the Zometa on the study if they know it definitely works.  We will see I guess.

    Have a good weekend everyone!

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    karen09, I made the same decision as you on the bisphosphonate trial at the advice of my onc.  The preliminary studies done with zometa were done at the standard level given for the prevention of osteoporosis (every 6 months) and those are what found the 34% risk reduction in recurrences.  So, the study guidelines of the increased dosage might yield better numbers, but they may not find much of a difference either.  34% reduction is already a pretty good percentage!  My onc seems to think they will not find much of a difference.  Luckily, I think my insurance will cover the zometa off-label since I have all the major risk factors for osteoporsis (thin, petite, white female) and will probably be looking at an AI instead of tamoxifen because of a family history of uterine cancer.

    I also had a 2nd opinion on where to go next with my treatments with a doctor at UCLA just last month, and she, too, advised if I could get the zometa off-label, she would go that route rather than the trial.  So, I feel we made a pretty good decision.  BTW, I may just be the world's worst decision maker as well, so I am glad my 2nd opinion told me the same answer as my 1st!

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  • Karen09
    Karen09 Member Posts: 320
    edited January 2010

    Thanks Weety!  I've been questioning my decision all afternoon.  Ugh!   I'll give it some more thought over the weekend and call them first thing either way on Monday morning I think.  I guess if they know the Zometa works, it's hard for me to think about taking my chances with the other medication. 

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    Boy....... now that I'm back my desk is filling up with work - whew!  I hate to complain because I am glad to be back.  Our cancer center isn't offering bisphosphonate trials that I would qualify for. However, when I talk to the onc again I do want to talk to him more about it - see what he thinks about if for TN patients.

    Weety - I had a hard time figuring out the time and how it was handled - I was completely clueless, but after many conversations with my HR department (one girl specifically) I got it right.  FMLA is standard across the board - 12 months job protection. (I believe this was put into place by Clinton)  However, they don't have to hold your position during that 12 months.  The way that my company works is that the STD benefits (which have a whole definition of their own as well) are based on length of time and level.  Depending on coverage you get up to 6 months STD benefits, which coincides with the first 6 months of FMLA.  The last 6 months of FMLA are covered by Long Term Disability.  If you're not ready to go back to work check with your HR dept or the powers that be to find out if you have Long Term Disability coverage and if so would you qualify for it.  My understanding is that to qualify for LTD you have to have been out for the full 6 months, not using the STD benefits off and on during the 6 month period.  If this doesn't make sense, PM me and I'll give you my phone number and try to explain it by phone.

    Hope everyone has a good weekend - stay warm!!!!

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    Thanks Jenn, I think I understand.  I guess I will have to call my HR and plead my case afterall!

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