Starting Chemo Aug 09

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  • weety
    weety Member Posts: 1,163
    edited October 2009

    I've asked quite a few questions on this thread about the use of procrit to raise hemoglobin counts.  I decided to wait a week or so to see what was going to happen to my levels, but also so that I could do a bit more research before making a decision.  Here's the weird thing that happened:  My hemoglobin was at 10.7 (slowly had gone down from 12 at the start of chemo) when my onc started recommending procrit.  She told me red blood cells don't have the fast turn around like white blood cells, so they end up going down very slowly, but they also only go up very slowly as well, so she wanted me to start the procrit early in order to keep the levels from getting too low.   Well, I DID NOT do any procrit shots, and interesting, my numbers jumped up on Monday to 12.6 and then today they were at 13.2!!! I DID NOT do any procrit shots!  How could this have happened??? I did have 1 neupogen shot each time, but it's my understanding that these ONLY affect production of WBC not RBC.  My onc is out of town until next week, so I'm relying on all of you for answers!

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  • Karen09
    Karen09 Member Posts: 320
    edited October 2009

    Kristin - my treatment didn't go too badly either.  My oncologist said I could try another steriod yesterday afternoon and that really helped with the nausea.  I was really tired though.  Like you, I get an awful taste in my mouth too.  Just when they flush something through my PICC though thankfully and I'm finding chewing gum helps a lot. 

    Jen - I am still watching Survivor!  That Russell guy is so annoying! 

    Hope you are all having as good a weekend as possible.  It's Thanksgiving weekend here in Canada so I'm especially thankful for all my blessings.  Take care everyone! 

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  • YoYo44
    YoYo44 Member Posts: 203
    edited October 2009

    Hi ladies,

    Glad to hear so much good news.

    Gilly, great news about the boot.  What a relief.

    Jenn, glad you are doing better with the Taxol too.  I find the weekly has been very kind to me.

    Kristin, nice to hear from you, you are always so upbeat and pragmatic.  I know what you mean about being busy with work.  I don't have enough hours in the day now and work is a crazy rush.  I tend to read some of the news here but don't end up posting much.

    Donna, nice to hear from you lately too.  Glad you are doing better.

    Karen, didn't realise you were a fellow Canuck.  Where are you from?  I am in the Montreal area. I'm a Survivor fan too and I agree that Russel is a weasel.  Interesting season so far.

    Well, I had tx# 11 this week and am still doing fine.  Hair is still here, but shedding.  The neuropathy comes and goes in my feet but right now is almost gone (weird but good) and haven't gotten it in my hands yet.  The foot massages did help (thanks for the advice September sister!) as do thick soled shoes. My RBC's came up after dropping for a couple of weeks (WBC's also dropped initially but have stayed in normal whole time) .  I have been eating cream of wheat, dried apricots and made sure to have 1 glass of prune juice per day (not my favourite and a little challenging for the gut so need to be cautious).

    I saw my onc Thursday and he is thinking about having me go to 14xTaxol and then surgery.  I talked to one surgeon already and he will talk to the onc about the Taxol to decide if they stop it or continue.  So now I need to start making all the surgery decisions. Because I have ILC and small breasts it will be a MMX but I am thinking of the bi-lat.  Don't want to do this again, ILC is hard to detect and think it would work better for symmetry too.  He is OK with that but does not believe in starting reconstruction immediately and does not do nipple and skin sparing surgery so I think I will get a second opinion.  Just not sure-trying to get into a good mental space with this.  Then will have to brace for more chemo after.  

    But I am lucky with my chemo and disease response so I will have a very thankful thanksgiving weekend.  Strength and hugs to you all.  Have a great weekend!

    Yo

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  • Karen09
    Karen09 Member Posts: 320
    edited October 2009

    YoYo - I'm from New Brunswick!  I didn't realize you were Canadian either.  Happy Thanksgiving!  Good luck with your surgery decisions.  Strength and hugs to you as well!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Yo,

    I'd recommend against nipple sparing mastectomy because according to my surgeon, the nipples would still be prone to cancer and worry. Once all the tissue, fat, ducts, lobules is removed from inside the breast, the nipples are not gonna have any sensation left either. Skin sparing is definitely an option. It is more viable with immediate start of reconstruction than delayed.

    Good luck.

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Happy Thanksgiving to all the Canadian girls on here! 

    I'm sitting at the computer (resting) while Hubby cooks the turkey.  We're celebrating today!

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  • Karen09
    Karen09 Member Posts: 320
    edited October 2009

    What part of the country are you from Marie? 

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  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    I woke up feeling okay this morning - a few aches and pains, but to be expected.  I haven't taken any nausea meds this round - as the onc thought it may be overkill and suggested going w/o medication.  He was right - I did fine.  It does seem that I'm tolerating the Taxol a little better than I did the AC.  As I type this I'm knocking on wood - don't want to jinx myself.   

    I'm not Canadian, but wanted to wish you all a Happy Thanksgiving!!! 

    YoYo- I had a bi-lat before chemo and really didn't have much time to think, but I do remember my onc recommending against nipple saving surgery for the same reasons Unckle stated and you're going through all of this to lessen your chances of recurrance.  I know it's a hard decision and I wish you luck.

    Hope everyone has a great day!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Hi Jenn,

    Thanks for sharing your experience with Taxol. Your experience is consistent with what I have heard on all the boards that Taxol is gentler than AC and Neuropathy is the main thing to watch out for.

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    I am so tired, and wondering if I will ever feel "normal" again. I have gained 25 lbs since I was diagnosed only 4 months ago, but have no energy to get up of the couch and do something about it. I have 2 tx left followed by 35 rads, it seems like it will never end. In general I feel like crap all the time!

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  • kristin09
    kristin09 Member Posts: 56
    edited October 2009

    Morning #4 after tx #4 and I have the typical sluggishness, numbness and lightheadedness.  It's very strange, but my body, especially my head, feels numb.  Does anyone else experience this? My vision seems to be worse, too, for a week or so after tx . . . weird.  These SEs typically don't hit until the Monday after my Friday tx, but they started yesterday afternoon.  I guess that is due to the cumulative effect, things will start hitting sooner and lasting longer.  Oh well, at least I feel like I know what to expect.

    Donna - I am so sorry that you're feeling down.  I look at your beautiful picture and can't imagine you with a sad look on your face.  There is no doubt that this SUCKS, but there is also no doubt that we will all feel normal again.  The weight will come off and your energy will come back.  I know that you know this but are just having trouble seeing it right now.  I wish that I could give you a hug.  I have an idea . . . get up . . . walk around the house a bit and pretend that you're walking to chilly Michigan to give me a hug.  Then, give yourself a big bear hug and tell yourself it's from me (and the rest of us!).

    My family was here this weekend for the Making Strides Against Breast Cancer walk.  We had 35 people walking for "Kristin's Krusaders".  I was humbled by the experience and by the show of support from my friends, family and coworkers.  It was chilly, but sunny and I made the 3-mile walk with no problem.  Couldn't do it today, that's for sure!  On that note, I'm going to go get dressed and exercise.  Donna - join me . . . :).

    K 

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    Thanks Kristin, I got your much needed hug! I have been reading the Oct. Rads postings and it seems like alot of people really have a hard time emotionally during rads, more than surgury or chemo? This seems weird to me I can't wait till chemo is over and feel like rads will just be a temporary pain in the butt as far as time goes? They must know more about rads than I do, for sure! The reason I am asking is how many of us will be doing rads besides me? I will start Nov 17th just 5 days after my last chemo, so soon because I am trying to get most of my rads done before the end of the calendar year (for insurance). I have a $50 copay each time I do rads after the first of the year, I have already met my max out of pocket for 2009. Anyway I thought mabye we could do a count on who will/will not be doing rads. Hugs to everyone, Donna

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  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    Good morning - Woke up today having a lot of muscle aches, which happened last round of Taxol and the onc said was expected for Taxol. My stomach isn't happy, but tolerable.  It seems the SE's from Taxol come on a few days later than they did with the AC.  Oh well, today is expected to be a cloudy rainy day so I'll stay in and hopefully feel better tomorrow.   

    Donna - I'm doing radiation, but I don't think I'll be starting until the end of this year, early next year.  I'm sorry you're having a bad day.  There was a time (before BC) that I would have said if you're having a bad day, watch some bad TV, eat some ice cream and tomorrow will be better.  However, this journey has given us more time than we ever imagined sitting on the sofa watching really bad television.  So.......... all I can say is we're almost finished with chemo, take Kristen's advice and take a walk around the house and know that I'm sending you ((((Hugs))))).  

    Kristen - I get the weird mind numbing, foggy feeling after chemo as well - it's a strange.  What a wonderful thing your family and friends did for you and kudos to you for making the walk as well!

    Unkle - I do have some pains in my hands and feet, but so far they're tolerable. I'm sure hoping it stays that way.

    Hope everyone has a good Monday!

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  • Karen09
    Karen09 Member Posts: 320
    edited October 2009

    I'm Day #4 after treatment too.  Feeling sluggish and had some diarrhea earlier.  It's getting cold here - I'll probably end up turning the heat on for a bit tonight. 

    I'm doing radiation too but probably not until February.  I have my last chemo early in January and they wanted to wait a bit.  I'll be so glad when this is over!  I know I should be thankful that my chemo is half over now but I just want my healthy life back. 

    Hang in there everyone!  Hugs!

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  • gillyone
    gillyone Member Posts: 1,727
    edited October 2009

    Donna - sorry you are feeling down. I've been reading the October rads thread too and have been surprised at the emotional times they are having. I am expecting to start rads towards the end of November and so just wondering what it will be like. I am coming to the end of chemo - taxol #3 tomorrow and the last one on October 27. Then have my rads consult November 3.

    Have a healthy day everyone.

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  • kristin09
    kristin09 Member Posts: 56
    edited October 2009

    I am not sure yet about radiation.  I am still considering a mastectomy and will wait to see what the doctors say after I have some post-chemo pictures taken.  When I had my second lumpectomy (unclear margins the first time), they found DCIS close to the chest wall so I may need radiation even if I have a mastectomy.  I'm going to Mayo early in December to consult with their docs in addition to mine here in Michigan.

    I hope that our hugs are making you feel better, Donna.  Don't read about others' experiences too much and let it get you down.  If I had based my expectations on reading about others, there's no way that I'd be as positive as I am.  I know that your smile is on its way back - let it shine!

    Good to hear from you, Karen.  How many txs are you having?  We're both on #4 and I have 2 left, but if you're not done 'til Jan, then I'm guessing you have more, eh?  I'll consider myself lucky to be done in mid-Nov!

    K 

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  • weety
    weety Member Posts: 1,163
    edited October 2009

    Kristin09,

    I, too, am wondering and trying to figure out if I will need radiation as well after my chemo.  My mastectomy cleared the primary tumor, but there was DCIS left at the deep margin after the mastectomy.  My onc right now seems to think no radiation, but I'm still going to try to get in to see the radiology onc as well as try to get a 2nd opinion somewhere else.  My onc's reasons are the whole issue with my age (39) and the possibility of future heart problems--I've got a lot of years ahead of me with this heart, she said and she said rarely will they do radiation just on DCIS.  That last part concerns me, though, because I've read a lot of posts on this site where they do recommend radiation.  Please keep posting about what your doctors say as you get closer to making a decision.  I think we are about at the same point in chemo.  I just finished tx #3 last week. 

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  • msmpatty
    msmpatty Member Posts: 818
    edited October 2009

    Hi everyone.   Haven't posted in a while. I had AC tx#3 ten days ago and just got my energy back today.  It was toughie!  But just one more AC to go and then on to 12 weekly Taxol.

    Kristin, I definitely get the numb feeling.   I especially notice it in my face.   It usually happens in the week after a treatment, then goes away.  

    Donna, I'm doing rads after chemo.  But it'll be a while since I'm not done with chemo until the end of January.   Funny thing is...prior to surgery I really dreaded the rads.  I almost didn't go the breast conserving route because the rads sounded like such a drag.  Now I'm almost looking forward to them because starting rads means chemo is OVER!   I can see how they might wear you down though,  going everyday.    My mom had rads over 22 years ago for BC and she said that compared to chemo they were a breeze.  She's now 87 and going strong...

     Patty

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  • Karen09
    Karen09 Member Posts: 320
    edited October 2009

    Kristin - I have four more to go so I'm halfway through.  I was told they usually give 6 treatments but where I'm triple negative they decided to give me two more.  Mid November isn't that far away for you!  Good luck with your surgery decision!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    Good morning - Yesterday was tough.  I know the onc said the Taxol will give me body aches and pains, but I had to take medication every 4 hours or the pain got so bad I was nauseated.  In addition to the pain my stomach was not happy.  However, today I woke up feeling like myself again.  I got up early this morning, got in a good walk with the dogs and now I'm getting ready to head to Walmart to hunt down some Halloween "stuff" and get out of the house. If I'm still feeling energetic I may go to Macy's and look for some tops that look good on a boobless person.   The weather is still really hot and humid here, but it's suppose to drop to 50 degrees by Friday.  Whoo Hoo..........

    Isn't great that we're talking about rads - it means we're closer to being done with chemo. 

    Hope everyone has a great day!! 

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  • YoYo44
    YoYo44 Member Posts: 203
    edited October 2009

    Thanks for the confirmation Unkle.  I appreciate your knowledge and common sense.  I was told the same thing about the nipple sparing but wondered if the skin sparing was looped in the same.  And I wondered about the other breast without the bc for these options.  More question for the surgeon I guess.

    Donna, hang in there.I don't expect to have rads but who knows until they get at the lymph nodes... I would think it is a long haul to have to go in every day for a few minutes to get irradiated.  But at least you will have the chemo and surgery behind you so you will be well on the way.  It's a bit like when you are jogging and get tired or bored and have to keep tricking yourself to run to the next street sight or light post or dirveway... or whatever it takes to keep you going.  You can do it, you have made it this far!

    Strength and higs everyone.

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    Hi everyone! Well I guess I am in chemopause, my period is 3 weeks late and it is never late. Mabye this is contributing to my cruddy feeling, I also think I might be a little anemic my last labs were borderline. I get out of breath real easy, anyone one else experiencing this? I took a shower today, Yeah! for small spurts of energy. Anyone else in chemopause, I really thought it would be more dramatic than that, here one month gone the next. I am having lots of "hot fits" thank goodness I have a remote for the ceiling fans, it comes in handy! Hope everyone is se free today, Hugs....Donna

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited October 2009

    And now I believe my mom, chemo-brain is real. She used that excuse for everything and now I do too! I have a severe case of CRS (can't remember !@#)

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  • kristin09
    kristin09 Member Posts: 56
    edited October 2009

    Donna - CRS - too funny!  My problem is that I simply can't think straight (how about can't think for !@#% - CTFS!).  I am in chemopause as well but it pretty much started after my first tx; no hot flashes, just cessation.  BTW, I think that I can see your smile coming back!

    I have learned that I need to take the Mondays after tx off of work because I CTFS, but much to my disappointment I had to leave work early today, Tuesday, as well.  My brain simply wasn't tracking and I felt awful.  Hopefully tomorrow will be better . . . I'm counting on it.

    Weety - sounds like we have similar cases.  My onc here has indicated a preference toward radiation, but the specialists at Mayo and U of Mich seem to be more hesitant.  I'll keep you posted although I probably won't know anything until early December.  After how this fourth tx has hit me, I am determined to do whatever I have to do so that I don't have to face chemo again.

    Jen - thanks for the positive reminder - you're right, if we're talking about rads then we're on the downside of chemo. I'm sorry that the Taxol is hitting you harder than expected.  That darned poison!

    Patty - my numbness goes away, too, usually by day 4 or so, but it seems to be sticking around longer this time.  Strange feeling. 

    Here's looking to a better tomorrow!

    K 

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  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    Good morning - I made it to Walmart yesterday and got my Halloween junk, but lost steam and didn't make it to Macy's.  I'll save that for another day.  I'm up early this morning to get my walk in and a few things done early because my oldest daughter and I are heading to the zoo today to see the new baby Orangutang.  I find the mornings to be my best time and figured I can use it to my advantage.  I too am going through Chemopause - I start with hot flashes around 7pm that last into the morning.  Ugh!!!

    Kristen - Sorry you're having to take off Monday's - I know you hate having to take off from work. Hopefully you're feeling better by today.  The Taxol is easier than the AC, but I think I'm frustrated because I am so ready to feel better and doing weekly treatments only gives me a few good days instead of a good week or so.

    Donna - When my RBC and Hemoglobins were bottomed out I had a really hard time getting up to do to the most basic things, shower, light housework or even fix a meal. It was an exhaustion I've never felt before probably much like you're feeling now.  Unfortunately for me I had to wait until the counts were next to nothing to get approved (for insurance purposes) for the Procrit shot, but it did work and have noticed that since I did the Procrit shot my energy levels are up and according to my last labs so were my blood counts.  I'm sure you're talking to your doctor, but ask about the shot it may be worth looking into.

    YoYo - When I had my bi-lat I was told they do save the skin for reconstruction.  I think a lot of what they do depends on what you elect to do such as getting expanders at the same time or waiting until a later date.  

    Hope everyone has a wonderful day!

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited October 2009

    Hi Ladies---------Count me in on the chemopause and the CRS/CTFS.  Also feeling very down.  Not sure if it is the cold dark weather or what.  Just struggling I guess.  I read the threads everyday but just don't have the energy to write much.  Thanks for listening.

    Navy

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  • gillyone
    gillyone Member Posts: 1,727
    edited October 2009

    Hi everyone

    So sorry for all those suffering through chemopause on top of everything else. Fortunately for me I did the real thing in mid forties onwards so it is all behind me.

    Jen, I was hoping taxol would be better for you as you had it tough with AC. There's just no way to know.

    I had taxol #3 yesterday and while I was there showed a rash on my stomach and back that had appeared over the weekend. I have shingles! I am now taking some antiviral medication which hopefully will keep things short and manageable.

    Taxol SEs for me are yukky nails, a little bit of numbness in some fingertips, and tender feet with quantities of skin peeling off my heels which looks horrible. The good side is my sense of taste is returning for which I am very grateful. The down side of that is my weight is going up and I have been thrilled to get rid off some of my excess baggage. So I will try not to go mad eating tasty food!

    Have a good day.

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  • weety
    weety Member Posts: 1,163
    edited October 2009

    Chemopause and chemobrain big time here, too.  I can deal with the hot flashes, they come and go all night long, but what is really bothering me is that after the hot flash, 5 minutes later I have chills and am freezing cold!!!  It's making for very looooooong nights.  I usually only sleep one good 3 hour stretch, and then I wake up every 1/2 hour the whole rest of the night with either the hot flash or the cold flash.  Anyone else having problems with this?  I have on a few occassions taken ativan to help with the sleep (it does seem to get me through the night), but I have 3 kids (one is a baby) and my husband works nights, so I hate to take it because then NOTHING wakes me up.  I don't feel like it's very safe for me to do because of the kids.  Any suggestions that won't leave me as knocked out as the ativan?

    I also think I'm catching my daughter's cold.  The baby is all snotty, too, so it's inevitable that I'll get it anyways.  How do you know if you have to go in to the doctor rather than just letting the cold run its course?  My white blood cells have been running in between 3.0-6.5 each week.  The lowest they got so far was 2.9.  Do I have enough to fight off an opportunistic infection?

     Today I finally go for my prosthesis and bra fitting.  I'm barely an "A" cup, so it really hasn't been that much of a priority for me.  I've just been wearing my old bras "empty."  Does the  prosthesis fall out?  How do you wear lower cut shirts without it showing?  Maybe my situation is different because of my small size--I don't have much cleavage to worry about!

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  • Can-D
    Can-D Member Posts: 45
    edited October 2009

    Weety, I too have the hot and cold flashes that prevents a good nights sleep.  Thankfully I do not have the flashes during the daytime. Im 40 and my son is in the Air Force, so I can sleep in late now until I return to work next week.  You must be very busy with your children and cant sleep in, but hang in there. 

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  • kristin09
    kristin09 Member Posts: 56
    edited October 2009

    Navy - take care of yourself, we all have our "down" days, and you'll be through this before you know it.  Like we did for Donna, take a walk around the house like you're walking over to my place, stop and give yourself a bear (((hug))) from me!

    Weety - my period stopped, but I haven't had any hot flashes so I've been lucky.  I have found that Tylenol PM or Simply Sleep (Tylonel PM without the Tylenol) works very well for me.  I usually take one and take two if I'm expecting to have difficulty sleeping.  On nights that I have taken two, I still wake up if my daughter cries, so it's not too sedating.  As far as a cold, I had one last week and I just let it go, although I didn't have extreme symptoms.  I suppose that if it hits you harder than a "normal" cold, then that's your cue to go to the doc. 

    Today was better than yesterday but I left work early once again.  And, for the first time, I had to miss one of my appointments with my personal trainer (through the study that I'm on); that was a bummer, but I'll go tomorrow night instead.  Now that the nausea and fogginess have subsided a bit I am left with the extreme bitter taste in my mouth.  In fact, it's so bitter that it's almost like chewing on an ashtray.  Sounds fun, eh?  Aarrgghh!  Gill - I'm jealous of your taste buds!

    I'm all signed up for the clinical trial on bisphosphonates.  I was assigned to the Zometa arm so I'll have to go in every month for 6 months for a 30-minute infusion and then every 3 months for three years.  My onc says that these drugs have shown promise, internationally, in preventing metastasis to the bone.  It will be a pain having to have an IV well after chemo is done, but hopefully it will be worth it.

    K 

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