January 2012 chemo

Denise-G

Bela - it will get better soon.  Take those pain meds.  I hated pain meds, but they are your friend along with stool softeners and lots of water!

I have 3 more weekly Taxol to go.  Anyone else getting weary and feeling the cumulative effects?  Wow, I am just so tired.  Feels like back on A/C as far as fatigue. 

Gayle56

Nancy glad you are going to go on vacation - you deserve it.

Gayle

NancyHB

Gayle - thanks, to you and everyone else, for your continued patience and encouragement.  I was laid off three years ago this summer and my DH and I have not had a day away since then.  I can't imagine that taking a few days in the middle of radiation will make *that* much of a difference in my treatment.

Denise - I had my fourth of 6 dd Taxols last Thursday; the pain started earlier, and is hitting harder than it did last time.  I am also much more tired this tx than I remember being before.  I think the accumulation may be catching up with me a little.

Jennt28

Hugs to all still hanging in here. I have another 5 weeks of weekly Taxol/Herceptin before moving to 3 weekly Herceptin and rads. Will still be here (probably talking to myself on our January thread) until March next year!



I have a cold with cough. Could have done without it... Either the Taxol or Herceptin has thinned out my sinus lining anyway and so I'm blowing red bloody tissues - not very attractive to say the least. I worked from home today rather than going in and sharing my germs with everyone else in the office. Can see this being a working from home week.



Jenn

NancyHB

Jenn:  *hugs*  I'm so sorry you're not feeling well.  I've had the sinus-thing going since the first Taxol treatment - but only in my right sinus.  My left sinus is just fine, except it's completely blocked with mucus.  It's the oddest thing - like having two different noses on my face at the same time. 

I promise to come and hang out with you here until next March.  :-)

I made the mistake of stopping my steroids a day early this weekend - and as I should have expected, the pain started a day early.  Luckily I'm off today thru Wednesday (break in-between semesters) so I plan to eat pain meds and sleep alot.  Or at least catch up on General Hospital.

My DH and I went to a Relay for Life fundraiser on Saturday night with some dear friends. The theme was "Vegas Wedding" so I made a pink tulle skirt and wrapped tulle around my white head scarf like a bridal veil - decided I'm wearing this for my final chemo.  :-)  At least I won't have any decorative buttons to try and undo.

CharB22

NancyHB - you and those decorative buttons crack me up!

Last night, DH and I were planning our "Celebration Vacation" - taking the kids and going on a week long cruise to Cape Canavaral and the Bahamas. We didn't book it but I'm giddy just thinking about it!

Gayle56

JennT28  Sorry you aren't feeling well. 

 CharB22  - that sounds like a great trip.

BelaT

Thanks NancyHB , I am ok, Had a normal day as a surviour its hard to deal with .

Char : glad you are done.

Heloow to Janet, Diane, Gayle,Annie,Jenntb,NCBeachGal,KristinFro ,Annie3310, sleeplessinseatle.

Th ank Momof2inME

Bela 

NCbeachgal

Hello BelaT-I hope you're feeling ok and taking time to heal. Take good care!

CatWhispurrer

I finished my last DD taxol today.  Now, I just have to get through the horrible SE's for a few weeks.  It has been setting in earlier and getting worse each infusion.  My MO okayed the supplement I added this week to help with neuropathy because he was encouraged that it helped enough that we didn't have to cut back on the last dose of taxol.  My WBC was low again so I do need to get a Neulast shot tomorrow - oh joy!  Next onto rads whenever they give me an appt to meet with the RO.

NancyHB

Congratulations Tina!!  These dd Taxols are kicking my behind - I can't wait to be done!  I hope you have minimal SEs this last treatment, and fly through recuperation on your way to rads!  *hug*

Janetanned

Tina - YAY for being done!!!!!!!!!  However, give yourself a few weeks.  Your body isn't really done yet.  But, it will get better and better.  I feel pretty good this week (so far).  What supplement are you taking?  My toes are still numb.  Not too bad, but very annoying.

Hey Bela!  How are you feeling?  Hope you are taking your pain meds as prescribed.  Hang in there, things will get better!

Char - your trip sounds wonderful!  How exciting!  When will you take it?

Nancy - Like your final infussion outfit!  Those nurses are going to miss you!  Do you have one or two more txs?

Jenn - So sorry about your cold.  I can relate with the dried out nostrils and irritated sinuses!  Mine started back when I was having AC.  I have had a number of bloody noses.  Not fun!

CatWhispurrer

Janet - I know I have several weeks of SE's before feeling better.  They usually start Wed night, then Thurs, Fri are really bad (flat on my back and can't hardly move from pain and nauseous), Sat I start feeling a little better, then sunday the neuropathy kicks in too and lasts all week.  I've been taking L-Glutamine all along since starting taxol, but added Acetyl Lipoic Acid this week.   Studies have been done taking 600 mg per day, but I am staying with 400 mg which is what the bottle recommends.   It seems to be helping the neuropathy between the two different supplements.

NCbeachgal

Tina-congrats-you did it! Sorry you have to get the neulasta. It certainly compounds the muscle/joint aches and pains. Just know this is the last time for these aches. Take good care these next few days. Again-YAY! It's almost over.

Kitchenella

I'm really sorry so many of you are having problems.  I'm the old gal here and my SE's, thank G-d, have been minimal.  It seems that those of you on DD Taxol are having more problems than us weekly girls.  I can relate to the nose thing though.  I woke up at 4:30 AM today sneezing and the nose started dripping.  I stuck it out in bed until 6 and then gave up and got up to start my day.  Since I skipped last weeks treatment due to Israel Independence day I'm feeling a bit peppier this week so I plan to cook up some things and freeze them for the future. 

NancyHB

Is it just me, or has anyone else noticed that "good" days suddenly become "amazingly greatly wonderful" days where I feel like I can do anything?!  It's funny - before all of this a day was just a day, and a day with a little extra energy meant maybe I got an extra load of laundry done.  Now, when I get through the Taxol pain days and I start feeling better, I feel like I can take on the world and I get *so* busy!!  I find myself wishing I could give up sleep so I could stay up all night and do stuff - like quilting, reading, cleaning, organizing, making jewelry, whatever.  I just feel like I have a new appreciation for "good days" and a smidge of extra energy.

Kitchenella

Nancy I don't get quite that peppy but the fatigue doesn't seem to keep me down as much as when I was on the AC.  I feel a bit jet lagged all the time but a short rest gets me going again.  I don't seem to need quite so much actual sleep in the daytime.  But then I'm on weekly Taxol so I don't get the big ups and downs.

Jennt28

Send some of that energy this way :-)



Weekly Taxol is actually hitting me hard and there are now no good energy days. I am not making it to work for full days and this week I have what would normally be a mild cold and cough that is making it even harder.



5 Fridays to go and counting...



Jenn

NancyHB

I can't imagine having Taxol every week - there must be no time to recover.  Maybe that's why I have a day or two of wonderful energy (the steroids are certainly helping with that, too) - it's like, I've felt so bad for so long that when I start to feel even remotely close to normal again I just go all hog-wild and overdo it.  The dd Taxol may cause a lot of pain, but I have a little more time to get over it.  Let's face it, there just isn't a "good" treatment in any of this - it all sucks.

Jennt28

I've seen so many on here comment that weekly Taxol was a "breeze". I guess since I was one of the "lucky" ones who got BC despite a risk of only 0.9% I should not be surprised when I get "lucky" with SEs 😷😏



Jenn

Momof2inME

I am so envious of those who have finished and are regaining some energy. I have #9 tomorrow and have really felt the extreme fatigue since last treatment. Have not been able to recover even a little this time. The bone pain has plateaued but doesn't really go away completely. The weekends are and then into Monday are still the worst days.

I truly celebrate those that have finished becasue you all can tell us how much better it gets. I look forward to that.

{{HUGS}}

Denise-G

Just completed #10 of 12 weekly Taxol today plus Herceptin.  You know, the weekly Taxol has not bothered me going to infusion etc.  The time has flown by.  It is always Tuesday.  Back on Dec 27th when I started Chemo, I NEVER thought May would get here.  Today I am celebrating MAY DAY!  Hooray! 

Momof2inMe - SO SORRY you are having so much fatigue and pain.  And no time to recoop.  It will be better soon, but so hard when you are in the middle of it.

Nancy- On my good days, I am having more energy.  Plus, I have more energy in the mornings than I ever had before.  I did more this week on a couple of good days than I have done in a long time. NP told me to slow down as save some energy because getting tired earlier in day.  I sure value energy more now than ever and know what a precious gift it is!

Kitchenella-Chemo Nurses have told me they think on a broad basis, that weekly Taxol girls seem to have less side effects - or at least not as severe.  They said there are certainly exceptions, but at Univ of Michigan, they have alot of BC patients.

Jenn - so sorry you are having so many SEs being a weekly girl. 

Okay - so Kitchenella and Jenn - ARE YOU RECEIVING HERCEPTIN?  Curious about protocol in Israel and Australia.  If so, for how long?

Jennt28

Thanks for all the lovely support :-)



I don't think that this would be so bad if I wasn't trying to keep working full-time. If I could relax and potter at home it wouldn't be so mentally hard. But we need the money and in my rare moments of energy I do remember that I love/ed my job...



Denise - Yes. Herceptin is offered to all Her2+ women in Australia but the TGA (pharmaceutical board) mandates that it MUST be given in conjunction with chemotherapy including a Taxane. I am getting Herceptin weekly with the Taxol and then when Taxol is done I will continue with 3 weekly Herceptin until March next year - 1 year of treatment all up. Because we have govt subsidised pharmaceuticals my Herceptin costs $36.00 fee each time.



Jenn

Kitchenella

Denise I get Herceptin for a year. I don't even know if I have a co-pay for my treatments.  If we do it isn't much.  Will have to check our bank statements as we have those kind of co-pay's automatically withdrawn. For other pharmacy co-pays we pay up front at the pharmacy.  The medical system works pretty well here but taxes are sky high and medical personel don't make much money (Doctors are on a salary other than any 'private' patients they get). I was once told that starting pay for a low level Doctor here is 20NIS per hour.  That is a bit than $6.00. Also although medically things are quite up to date other perks that we had in the USA are missing.  Crowded hospital rooms. Ambulatory patients walk to tests. No nice bedside kit with water pitcher, basin etc.  Our chemo infusion room is adequate but also crowded. it is one big room with old but comfortable recliner chairs for the patients but just regular kitchen type chairs for the caregiver. We take our own blood sample down to the laboratory. If you don't take your own you might have to wait forever for someone from the floor to take it down. When one bag of chemo is finished you usually  to go find your nurse to change it unless she just happens to notice you are finished.  You also really have to advocate for yourself here.  I kept expecting a call or a letter telling me it is time for a mamogram etc. but it never came. My surgeon told me to see him after 6 months.  That is coming up and I can bet I won't get a reminder. At my last infusion day for the first time my nurse was not there. I had just put my chart in my usual nurse's cubby and waited for her to get to me.  Typically that takes time because of waiting for the blood results.  When the time got to be longer than we expected I went up to the nurse area to ask about the delay. The nurse who was assigned to me was standing there and asked me my name.  Then, in typical Israeli fashion, she looked mildly annoyed and told me "I've been looking for you. You should have asked who your nurse was."  I will say she was very nice after that.  No system is perfect that is for sure but once you get used to the system here it OK.

Denise-G

Jenn and Kitchenella - thanks SO MUCH for describing the systems in Australia and Israel.

Fascinating to know. 

Jenn - I would be since you are getting weekly Herceptin this has really added to your SEs.

I get the Herceptin every 3 weeks and when I have it with the Taxol, my SEs double.  Especially bone pain, heart burn (never have with just Taxol), extreme dry mouth, etc.  I just know it is much, much worse.

Kitchenella very interesting to read about what you have to go through with the Israeli medical system.  Very fascinating.  Amazing there are any doctors with the wages!  What a switch from USA.

So we will all be going through the every 3 week Herceptin.  Have you heard about the movie Living Proof which is about the doctor who invented Herceptin at UCLA?

http://www.mylifetime.com/movies/living-proof

If you go on YouTube there are some clips of it.

It was out in 2008 - I ordered it last night on Amazon.  I guess it is very touching and especially touching about the women who volunteered for the Clinical Trials.   Just reading about it, made me realize I have to stop complaining about Herceptin and the SEs and be so grateful that it is saving my life.  Certainly, we had little hope before Herceptin. 

Prayers for all.... 

SleeplessIn

Congrats to all who already finished chemo, and positive thoughts and well wishes for all who have a few more treatments to go!! There is light at the end of the tunnel. Keep looking, and you'll see it!!! ;-)

Momof2inME:: You are getting there. You'll be done before you know it!!!

Jen, No, Taxol is NOT a breeze. Not for me, and not for many of us, it seems!!! - If pain persists, can you not take any more time off work if need be, or at the very least work from home? - I hope you (and your hubby) will be feeling better soon.

Bela, hang in there!  

Well. I had my final Taxol tx last Wednesday, and I am glad I stuck it out - when I was very close to quitting chemo after the debilitating first two dd Taxols. At the time my MO wanted to switch me to weekly infusions (saying that was going to be easier on my body - yeah right?!), after the pain meds barely worked for me. I refused. Luckily, SE after infusion 3 were much less severe than after the first two, and SE after number 4 even less so than after number 3. My white blood count has come back to normal range (7.3) for the last three weeks, up from only 3.3.-3.4 during AC and Taxol 1&2. - So for the last infusion I told the nurse I did not want the Neulasta shot. That ticked her off a bit, but I really didnt care much about being extra polite at that point! She said that she needed to double check with my Oncologist, and the MO was o.k. with it. - As a result, I am sooo glad to experience "recovery" without that darn shot. I'm one week out today, and what a difference it has made!!! I had 7 Neulasta shots over the past months, and this last infusion without the Neulasta has been the by far "easiest" in terms of bone pain. Yay!!! Finally. Now I am ready to move on with my life. Well, soon.... :-)  I have a ton of appointments in the next two weeks to figure out what kind of follow up treatment (if any) I will be doing. I'll have to weigh the risks with the benefits as best for ME, something that my "wonderful" and well respected MO doesn't really seem to understand or care about. 

Has anyone else opted out of, or thinking about doing so, any additional treatment after chemo? Just wondering.... 

Gentle Hugs to all!!! 

KristinFro

Denise, Thank you for the head's up about the movie. Harry Connick Jr is one of my favorite actors. I'll definitely be watching it.

annie3310

Hi, everyone. I had my final chemo treatment yesterday and have officially made it through 4 dd A/C and 4 dd Taxol. I would say that all of the A/Cs were unpleasant, and the first Taxol was really unpleasant, but then Taxol 2 & 3 (and hopefully 4) were a breeze. Now I have six weeks off before surgery. I'm meeting with the BS next week and we'll decide on lumpectomy vs masectomy. I have no idea yet on whether I'll need rads; obviously will if we go the lumpectormy route. I'm triple negative, so I don't know if that means they'll throw the rads on there even with masectomy or not. I'm really hoping to avoid rads, but will do what needs to be done.

I'll still be reading this forum. I've gotten so much out of it and follow each of your stories closely.

Best to all

Anne 

Kitchenella

Denise we have alot of Russian doctors here.  I really admire the USA doctors that choose to come here.  They give up alot.  My primary doctor is from Milwaulkee and my Onc is from ST. Louis. They work very long hours for not much pay but you can tell they love it. 

I finished #6 of 12 Taxol/Herceptin infusions today.  Yeah..1/2 way done.  But....anemic.  Nurse said to eat iron rich foods so now I can have my chicken livers and cholesterol be damned.  LOL 

NCbeachgal

Yay Annie-hot damn, you did it! Take care during your break!