December 2012 chemo group

Tammyj

steiner18 sounds like we are almost on the same regimen I start on Jan 18 taking same drugs for a period of 1 year but 6 cycles. How is it going? 

Nicole503

ACT slump?

Hey ladies on ACT chemo.  I'm wondering when you felt a chemo slump and your advice for the days when you just feel vaguely queasy and slightly low energy.  I got my first ACT yesterday and today is a pretty normal day for me.  I'm tempted to dig in to my regular routine but I don't want to do anything that might make an upcoming slump worse.  I thought I'd read that day 3 was the hardest day for some.  Just curious about your experiences.

Also - for those who have done Round 2 or ever 3 of ACT, did the side effects change from Tx to Tx?

In good news, my Buffs finally came today!  I now have 2 Buffs, a reasonable wig, a gorgeous scarf from Good Wishes and a nice winter hat.  I'm ready to shave my head!  I know it's early but I am going to take my hair off on New Year's eve ~ I want to start the New Year looking like a woman living through breast cancer treatment.  Because I AM!

Happy Friday wishes to all of you.

Runnergirl2013

Hi everyone - day 3 for me post chemo round 2....felt good the first two days but the aches and weakness and fatigue have kicked in.  I have taken my claritin for the neulasta shot but te MO doesnt want me to take any tylenol as my liver counts were high last time.  I haven't had to take any anti-nausea medicine (so far) which is great as I felt so "out of it" last time when I took it.  I am so tired and weak but trying to sleep and get through the day.  Ugh this is is a long road but I keep telling myself I will get through it.  I am a single mom so my kids are gone today - so feeling a bit lonely. My wonderful boyfriend is with his kids today so I am happy for him but long for normalcy in my life....i am used to go go go and so much in my day.  Oh well - i guess i am going to enjoy the couch and a good book as much as I can.  I hope everyone else is doing good!

Thanks for all of the wonderful support - you are all so strong and brave!

mfml

I've been offline for a few days - so as always lots of catching up to do.

Nicole - I am doing ACT - have two rounds behind me - I do my third this wed (2 weeks apart - ughh.).  So - I have found for both that late in the day of day 3 I hit my slump.  The weirdest body ache I've ever had - I can't describe it.  My skin even hurt.  I was lucky with nausea both times so far - knock on wood.  Two was a tad harder than 1 (except for the fact that I knew what to expect from Tx 1).  I've been told that 3 and 4 will be much like 2.  But - I'm not so sure that this is true - I've heard from other people that the treatments can vary wildly..  so I would advise that you proceed cautiously into day 3.  I also felt pretty normal on day 2.  Maybe the premeds are still in your system on day 2.  Don't over-do it tomorrow!!  Sounds like runnergirl is also feeling the full force of the effects on day 3..  I love your idea of shaving your head on New Years eve!  I hope it goes well - certainly sounds like you are ready with all your head gear!!  Good luck!

Runnergirl - sorry you feel bad today.  Alone time can be hard when you are used to go-go-go.  My family comes home today after a week of being gone!!  I really miss them.  Maybe try to think of it as regeneration time for you - and take advantage of guilt free laying around doing nothing... I know - its easier said than done - but you need the rest and quiet!  I hope you enjoy your book!  I found reading made me dizzy - so resorted to mindless TV...  Good luck - thoughts with you - hope you come out of the slump soon.

jenjenl

I got a pixie hair cut today and I love it, kinda pissed it's going to be gone soon - not sure when though, my hair has been thinning but that's it.  Maybe I'll get another week of the haircut.  The hair dresser is cutting the wig that I brought it. 

I had two instances of acts of kindness today. 

1) this am at chick fil a the man in front of me paid for my food - they said it has been going strong for an hour so of course I paid for the person behind me.

2) I got a facial to lift my spirits and when i went to pay they said she put it as no charge - I couldn't believe it, I gave her a nice tip.

There really are nice people in this world.

I met with my radiologist and I will definitely be having radiation due to age and triple negative.

FriendGwen

Jenjenl - what a wonderful day for you!! That's awesome and just fills my soul with happiness! Enjoy that pixie. It's a great transition to our GI Jane and then smooth head. Im looking forward to my long-term pixie in 2013!

Bren58

Runner - day 3 and 4 are always the worst for me, then I start to feel better. I actually did not have as much fatigue with round 2 as I did with round 1. Enjoy some guilt free couch lounging.

Jenjen - it is always so nice to hear about the kindness of strangers. Glad it happened to you today, what a nice boost to your spirits.

mfml - Glad your family is coming home today, I know it had been hard on you to be away from them.

Nicole - sounds like you are ready to go to start the New Year!

duckiedee

Well, my hair started falling out in big handfuls yesterday (day 14), but fortunately I already had an appointment to get my hair buzzed and pick up my new wig this afternoon. Not a moment too soon! I struggled more with the buzz cut than I did with anything else so far. And, try as I might, I cried big tears when they started up those clippers. All my bravado flew out the window and I just melted. But, once it was done I was OK. Not great. But OK. The wig is beautiful, very nicely done, and looks just like my real hair. But it is itchy and not too comfy - will take some getting used to. Fortunately, I was thrilled to see that the hats I ordered online just a few days ago had arrived when I got home! Good timing... And they're really cute, too. My husband (God bless him!) has been so sweet to me today - hugging me and telling me I looked "hot". He even took me out to dinner since I'd had such an emotional day. I plopped one of my new hats on my head and braved the restaurant crowd. Not as hard as I thought it'd be.

So, to everyone who was like me and is dreading the hair loss, just know that it'll be OK. The initial clipper part is hard, and I wish I'd brought along a friend for moral support. (I didn't know I could, honestly!) But I made it through, and so will you. Stay strong, everybody! Love to you all... 

Ella1

Hi All,

Just a question. I had my first round of TC two weeks ago and it has been quite a ride. The Onc decided to cut my dose back by 20% due to some significant SE.



Has anyone had dose reduced and did you notice a change, was it easier, the same, ???



I know everyone's experience is different. just interested in your thoughts.

Ella1

Anonymous

Ella~I can't speak for those getting TC, but I'm getting Adria/cytoxan every third week, while many get it every two weeks. My oncologist told me today, " that's just how she does everyone, because it gives an extra week to recover, plus there are less chances of it causing other problems down the road."



One side effect of AC is it can cause leukemia down the road. I think that's what happened to Robin Roberts of Good Morning America. She was treated for breast cancer a couple of years ago, and is now being treated for pre-leukemia.



I hope your new dose makes it much easier for you.



Blessings

Paula

Dawn1008

Hi Ladies!!! Wow, I was gone in a fog for AC round 2 and the forum has gone wild! It took me a long time to catch up! Today is day 5 post round 2. Still fighting the bronchitis.



Nicole, day 3 and 4 are always my hard slump days. Day 3 is the worst, I usually stay in bed. Other days are way way better! Don't worry, those days pass fast and you'll be feeling up to par again soon.



Ella, I also am on the 3 week AC schedule, in week 3 my WBC counts are still rough. I need every minute of the 3 weeks to recover (blood).



I shaved my hair down to 1/2" just before Christmas and some of it is still hanging on. But I'm learning to wrap the scarves and have worn one wig. I wore a kitty hat out to the store and a sweet guy actually complimented me! That was nice.



Glad to hear that everyone is doing pretty well out here. Take care, Warrior Sisters!

kiwikid

Hi everyone

Well done on getting through this crazy hectic week, I've been swimming and lazing around at the beach and have just got back to the city for treatment.

Hi Sophia how did you get on? I am going in about 8 hours for mine and I'm hoping your first one went well. Lets hope for micro side effects alright!

I love the buzz cut for New Years idea, whoever said that, I might do it too.

Xx kk

Dwihtd

Had my third treatment yesterday and was told that next week I may not be able to have abraxane, only herceptin because of low white blood count. After hearing about how bad the n shots are, I guess having to wait another week is the lesser of the two. I see the dr a day before my next infusion. My hair has loose strands coming out if I run my fingers through it. All I think of is that is I have to postpone my abraxane, that means one week longer for my hair to grow back. Silly, right. Then I think what if this happens often and I have to extend the 12 week time to more weeks. Maybe they will just lower the dosage. Does anyone know about what happens or experienced this ?

Bren58

Even though I was careful and washed my hands all the time, used hand sanitizer, hardly went anywhere and made sure to wipe down the grocery cart handles at the store, I still wound up with a head cold! My head feels like it is 2 feet thick, eyes are swollen and I can't breathe thru my nose. UGH, and of course MO says I can only take Tylenol for the accompanying headache! Tylenol does nothing!!! Ok, a cup of tea and back to bed. Rant over.

Hope the rest of you stay healthy.

jenjenl

Bren - I fought one earlier this week too.  I was miserable bc I had sores in my nose and the only thing that helped me feel better was benadryl and Ayr nose mist/gel.

I think I am starting to get mouth sores...did anyone one do anything preventative?  I have the magic mouth wash but that's after the fact.

Nicole503

Bren58 - So sorry to hear you are sick!  I hope you are able to stay in bed and rest!  I'm not sure if you have ever tried Neti Pot (or if there would be reason not to with the nose bleed risk from neuopogen or other meds) but I have found it gives me great relief ~ albeit temporarily when I have a head cold.  You MUST use pre-boiled water that is cooled to body temperature (so that you don't introduce any micro-organisms into your nose).  You mix it with a neti pot salt packet and run it through your nose using a little tea pot and gravity.  I sometimes have to tip back and forth between nostrils to get the water to break through the congestion.  We have neti pot in almost any store here (Walgreens, Fred Meyer) but I'm not sure if it's as commonly used in PA.  Just a thought.

I woke up at 5 with a stuffy nose and a headache but I think it might be the neupogen SE because I haven't been out of the house except to walk since chemo.  Day 3 is dawning early and slightly unpleasant.  At least it's nice and quiet in my kitchen.  Once the rest of the fam gets up, I will trade and go back to bed.  Heading into a chemo cave day for me I think.

JenJenl - I've been using the baking soda/salt rinse (1 Tbsp each mixed in a quart of water) 3 x a day and no problems yet, but I'm early on in AC Cycle 1.  Just curious about others who are doing this -- do you do it every day or is it only something you do in the first week after treatment?

Thanks ladies for being a sympathetic ear when I wake up not feeling super spunky.

dcsandpiper

JenJen: For your mouth sores, gargle with baking soda and salt as preventative tactic. It really helps me.



I just did my 2nd round on the 27th of CT and it was fine. Luckily just got over a quick but very bad 2 day flu that hit on Christmas Eve unfortunately. Which unfortunately I passed on to my DBF and his mother over the holidays. Sigh. Not a very good houseguest - I feel horrible and hope she recovers soon as she is also preparing for a new series of chemo (colon cancer).



Flu passed quickly for me, so I hope it does for her. Now all is well and still feeling pretty good. Got the head shaved yesterday! My hairdresser did it free of charge and even gave me a ride home! I was the last customer. Such a nice guy. I'm looking forward to going back to try short cute cuts when my hair starts growing back.



I was looking forward to the Sinead O'Conner look, but I still have a few stubborn black fuzzy bits that the electric razor couldn't handle. So I guess I'll have to wait a bit for that clean look.



Wish I could have had a few weeks of the pixie cut! That sounds great whoever posted about that. So far SEs have been manageable. Even infusion days are not bad. My friend came with me we brought sandwiches and watched a movie on the iPad. I have this double connector thing that allows two head phones to be plugged in. Very handy device!



Stay strong girls! We will get through this... So much more I'd like to reply to and encourage you but I'm just not so fast on this iPad!



Take care!

sophiafred78

Hi girls! Had my first AC on 28th with minor side effects but can't stay long because I'm in my parents house and the office is freeeezing cold, so can't stay long at the computer. As soon as I'm back at my house I'll catch up with your posts. This is easier than I was expecting

Take care you all! Hugs

pands

sophiafred78 - glad to hear that your se are minor..my bad days were days 4 and 5 after chemo..with day 5 being the worst...

i hope everyone else has had minor se also...ive also gotten the cold that was going around here...man does that take a lot out of you since it hit on my 2 wall days..now its just hanging on..one day you feel like its gone and the next day its back..chemo nurse says this year its been bad..oh well...at least tylenol helps...

have a great weekend everyone and HAPPY NEW YEAR

Anonymous

I can't sat it enough! Taking acidophilus in pill or some other form and eating a yogurt a day will really protect you from thrush! Also because cancer isn't a respecter of cells. It kills the GOOD, the BAD, & the UGLY! We can protect ourselves from vaginal yeast infection as well as thrush by doing those 2 simple things, of course, along with the salt/baking soda rinses. If you don't have acidophilus, eat 2 yogurts a day. Just make sure it's a brand that contains acidophilus. Most brands do, but not all of them. It promotes healthy bacteria that our bodies desperately need.



Blessings

Paula

FriendGwen

Paula, I'm eating a big bowl of Greek yogurt, granola, and blueberries as I am reading your post! Will follow up with the baking soda!

Anonymous

Gwen~Good Girl! I haven't tried the Greek yogurt yet, though I hear its even better for you. How is the taste? I like blueberry the best.



Shalom

Paula

FriendGwen

Paula - I get the vanilla flavor. It's a bit gooier and not as sweet which is why it's good to add the cereal and fruit. But it offers more protein than regular yogurt.

Sandra60

I love Greek vanilla yogurt too ladies ! I need to check the brand though and make sure it has the acidophilus!

Hey question - we are invited to a small new years party - it will be day 5 for me - think I should go and risk getting germ bombed ?

Sounds like we are al pretty stable right now and I am glad to hear that ! Thank I all for your helpful suggetions ! My nurses told me lots of water and protein so I am off to do that right now !

Anonymous

Sandra~I still go to church. My church does lots of hugging & handshaking, so week 1 after chemo, I just gently hold my hands up, and say, " I'm sorry no hugging this week because of chemo." They are always gracious about it. After the first week, they are still cautious, but I let them know, it's safe to hug now. My treatments are every third week, so I have an extra week to recuperate.



Gwen~I'll check out the Greek style. I like the sound of extra protein.



Blessings

Paula

powermom

Soteria - I stnading on your head helping with the chemo brain?  As my DD says, "you are up-down." 

Bren58

Spent most of the day sleeping, probably because of the benedryl, and I feel a little better this evening. Nicole, I have been using the neti pot for years with distilled water and the little packets of saline stuff that go with it.

With no nose hair the runny nose thing is really interesting. Just starts dripping out without any warning! Hopefully this will pass quickly.

I am right with all of you and the daily Greek yogurt.

SharonS

Hello All

Read through the first couple of pages and the last page of threads. I started AC on Dec 27. Will do 4 cycles every two weeks and then taxol every week for 12 cycles. In 2008 I did 4 cycles of taxotere and cyto every 3 weeks. I read someone's post about not having many bad side effects and I can agree for my first go through. Really just a down day on day 3 or 4. The day after shot caused me bone busting pain the first time but the other three were ok. I might have brought that on myself as I went for a little run after the shot because I was feeling so good.



So here we go with round 2 of Chemo, hair loss, etc. My hair fell out last time exactly on day 14. Wondering if it will be the same this time. Last time I didn't get a wig, but I already have one for this time. My husband did the shaving last time and I will probably do the same this time. I decided that the wig will make everyone else feel better. People really don't know how to react to bald women. Really it didn't bother me. I just did hats and scarves.



I teach and am an athletic director at a small college. Last time my treatments came in my off semester but this time I will be teaching. If needed I can switch to online teaching but I hope to get through this like last time. Only missed on my chemo days and would leave when I got tired.



So right now I am about 48 hours after first chemo. This morning felt a tad rough but got in a walk and a lunch with my YaYas for my upcoming birthday. Felt better after lunch. My biggest complaint is that my skin hurts everywhere. Does that make sense? I did the Zyrtec with the shot, they didn't know about that last time.



I wish everyone a side effect free day. A little worried about the upcoming day 3 and 4, but for now one day at a time.

mfml

Hi Sharon S - I am so sorry to hear you are having to go through this again.  I am doing the exact same treatment as you.  I have done 2 treatments so far - my third is Jan 2.  I was wondering about your once a week taxol x 12 vs every two weeks x 4.  I am leaning the same way - though my doctor gave me the choice.  I was a little frustrated that I couldn't get a decent "medical" reason as to which was better to go with.  Sounds like the SE's are easier with the every week - though it lasts longer.  I'm just curious if other doctors come up with stronger advice of one vs. the other -  I realize there are no head to head clinical trials of the two.

I know exactly what you mean about your skin hurting!  It is the strangest thing - and hard to describe.  Mine comes late on day 3.  I don't know if its the chemo or the Neulasta shot.  It was particularly bad last time - my shoulders and neck the worse.  I've never had that type of pain - ibuporfen didn't help so I took a percocet leftover from masectomy - that helped finally.

My hair came out right around treatment 2.  I try to wear my wig to make other people more comfortable - but I am so uncomfortable in it  - that I'm really starting not to care and have started wearing hats and scarves more

I hope you do OK with SE's this time - mine have been fairly manageable - though many here haven't been so lucky.

Take care

Anonymous

Are you girls still seeing my avatar upside down? Cause it shows right side up to me. Maybe I need to remove it.



Blessings

Paula