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Need some Pink Ladies Wisdom!

shellywahl's picture
shellywahl
Posts: 11
Joined: Apr 2012

Hi there! Earlier this year, at the age of 42, I was diagnosed with Triple Negative Breast Cancer. Soon after I started 4 rounds of a chemo called Ixempra along with a clinical trial which included Cetuximab. The Cetuximab provided energy and helped counteract the fatigue to a large degree, it also gave me a terrible acne rash on my face and scalp which is clearing up now. Four weeks ago I had a bi-lateral mastectomy with Tissue Expanders and this Friday I begin AC chemo. Here is where I look to your wisdom...

The bi-lateral mastectomy took all the tissue and, the skin where the tumor was stuck was removed. So this round of AC chemo is considered preventative and the Oncologist said this will not be the 'full' dose of AC and it will be completed in 8 weeks. The day after each infusion I'll give myself an injection of something to help boost blood count numbers.

Has anyone else had a similar experience with AC chemo? What is this injection? Does it work? How did you cope with fatigue? I plan to return to work next Monday, after being on Medical Leave for the past 4 weeks. This week I'm just now feeling mobile and more energetic only to be faced with chemo and heading back to work. Words of advice?

TraciInLA's picture
TraciInLA
Posts: 1902
Joined: Jul 2009

Hi, Shelly -

I didn't have A/C chemo (I had T/C), but I think I can at least shed some light on the Day-After Injection for you.

Your doctor is most likely talking about Neulasta, which is given by injection approximately 24 hours after each chemo to help boost your white blood cell counts.

In my case, Neulasta worked beautifully. My oncologist wanted me to try the first chemo without Neulasta, and my WBC counts TAAAAANKED. So he started Neulasta after the next round, and my WBC counts stayed nice and high for the rest of chemo.

You will hear some women talk about pretty severe bone pain after each Neulasta injection. Please know this may or may not happen to you -- in my case, the bone pain was just moderate achiness in my legs, not any worse than the aches you get when you have the flu, and lasted only a couple of days. I never took any more than maybe 1 or 2 ibuprofen for it. Some women have found that Claritin helps really well with Neulasta bone pain, so you may want to ask your doctor about that in advance.

Hope that helps a little?

Traci

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

I was also diagnosed at age 42 in December 2010. When I was done with surgery, I also had AC chemo. 4 rounds (don't know dosage) every 2 weeks, then I had Taxol every week for 12 weeks.

The AC (nickname "RedDevil") made me very tired and caused a few bladder infections. So just be aware if you notice any bladder inf. symptoms to call your doctor and stay plenty hydrated! After the second round, my WBC dropped and I had a 102.9 fever. After that, I started receiving the WBC injection called Neupogen. I'm not sure if that's the same as Neulesta, but it seemed to do the trick! I had 3 injections before each chemo. Mon.,Tues, and weds were the injection days, then chemo on Thurs. It did cause bone pain, especially after the third injection, but it was manageable!
From my understanding, the injection helps the whiteblood cells from dropping too low by regenerating the cells in the bone marrow. That's why some people feel the aches in their lower back,neck and sometimes in the center of the chest. I'm no expert on this, that's just what I was told by my onco nurse. Some of the other Pinks will be able to shed more light on this! But the injections did work for me!

As far as working goes, my onco said not to work the day of or the day after AC. I think thats why some people like to have chemo on Fridays. I worked about 4 hours a day 3 days a week during the AC, then less hours after the Taxol started.

I hope sharing my experience has helped you in some way!
We are all here for you!
Thoughts,prayers & hugs,
Joyce

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

I don't have any advice about chemo as I didn't have it, but, wanted you to know that I will be praying for you and I am sending some hugs too!

Debby

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I was lucky and had very few side effects of pain from Neulasta. My shins hurt occassionally but nothing like severe bone pain. Just a "stitch" of pain here and there now and then. As far as fighting chemo fatigue... good luck, everyone is different. Some stay very active and continue to go to the gym and excercise regularly. I had my chemo in 3 week cycles. I went on thursday so I took friday and the following week off from work to rest, then went back to work for the rest of the cycle. By the last treatment, I was really dragging and ended up taking off two weeks after. It is important to listen to your body and rest when it needs it,drink drink drink as well.
Good luck to you
{{{Hugs}}}
Sandy

MAJW
Posts: 2515
Joined: May 2009

I have this after every chemo...but I go back to my cancer center for it and a nurse gives it to me.....unless you live far away, I would suggest you go back and have it given to you there....especially the first one...you never know if a reaction may occur...plus it needs to be given slowly or else it burns, like the dickens! Plus if there's a problem, it's up to them to solve it... I get slight hip and thigh aches but that's about it.....

Wishing you the best...
Hugs, Nancy

Rague
Posts: 3440
Joined: Aug 2009

For me, A/C was not bad at all. I did 4 DD A/C neo-adjuvant and it didn't slow me down at all - no fatigue or pain or nausea. (I was 63 when DX IBC.) Basically, the only 'problems' I had was loosing head hair, sense of taste and appetite. Hubby had to call me several times a day to remind me to eat something. Be sure you drink a lot of water/fluid to keep hydrated - that wasn't a problem for me as I'm a 'waterholic' and always have a container of ice water close at hand so habit took over and I had no problems getting enough water.

Neulasta (pegfilgrastim) is probably the shot you'll get the day after A/C. It is to increase white blood cells production in the bone marrow to help prevent infections. For some, it produces quite a bit of pain but I had no pain from it at all. I would just go to sleep almost 2 hrs to the minute after injection and sleep for 2 hrs.

You will be given meds to counteract nausea (If you have any) before infusion and for several days after. It is thought that a p
Ossible predictor of rather or not nausea is a problem for you is rather or not you had problems with morning sickness when pregnant. I never had any morning sickness and never had any chemo nausea, even when 1/2 way through 12 Taxol I quite taking the anti-nausea meds at home.

As I said A/C was not bad for me at all but it is for some. Taxol was really nasty and all I did was exist on the couch or in bed for those 12 weeks because fo complete and utter exhaustion. The only good part was that the exhaustion started leaving a week after last infusion and got better daily through the 25 rads that started 1 week after last Taxol.

Ask - read replies but do not expect to experience any particular S/E's that anyone else has or hasn't. We are all as uniquely different as are our DXs are. There is no "One Size Fits All" when it comes to a BC DX.

Winyan - The Power Within

Susan

Rague
Posts: 3440
Joined: Aug 2009

For me, A/C was not bad at all. I did 4 DD A/C neo-adjuvant and it didn't slow me down at all - no fatigue or pain or nausea. (I was 63 when DX IBC.) Basically, the only 'problems' I had was loosing head hair, sense of taste and appetite. Hubby had to call me several times a day to remind me to eat something. Be sure you drink a lot of water/fluid to keep hydrated - that wasn't a problem for me as I'm a 'waterholic' and always have a container of ice water close at hand so habit took over and I had no problems getting enough water.

Neulasta (pegfilgrastim) is probably the shot you'll get the day after A/C. It is to increase white blood cells production in the bone marrow to help prevent infections. For some, it produces quite a bit of pain but I had no pain from it at all. I would just go to sleep almost 2 hrs to the minute after injection and sleep for 2 hrs.

You will be given meds to counteract nausea (If you have any) before infusion and for several days after. It is thought that a p
Ossible predictor of rather or not nausea is a problem for you is rather or not you had problems with morning sickness when pregnant. I never had any morning sickness and never had any chemo nausea, even when 1/2 way through 12 Taxol I quite taking the anti-nausea meds at home.

As I said A/C was not bad for me at all but it is for some. Taxol was really nasty and all I did was exist on the couch or in bed for those 12 weeks because fo complete and utter exhaustion. The only good part was that the exhaustion started leaving a week after last infusion and got better daily through the 25 rads that started 1 week after last Taxol.

Ask - read replies but do not expect to experience any particular S/E's that anyone else has or hasn't. We are all as uniquely different as are our DXs are. There is no "One Size Fits All" when it comes to a BC DX.

Winyan - The Power Within

Susan

shellywahl's picture
shellywahl
Posts: 11
Joined: Apr 2012

Ladies,
Thanks for your comments. The Neulasta injection is the order and since I have given myself several injections in the past, doc says I'll be fine injecting myself at home. I have to say, the A part of AC is weird. Didn't know it would make me pee red/orange. And, it starts immediately. Someone mentioned being a wateraholic and I can relate to that as I drink water all day long as long as I'm not driving around town. Have to work to keep a drink with me then. Getting back to work will help, it's mostly a desk job. And, routine is good.
Of course we all have different reactions to the treatments that is one of the best things about the forum because you hear/read about different reactions that help anticipate. At least for me, I plan for the worst but expect the best. My friend who went through AC said she really struggled with chemo brain, so having a good support structure is very helpful.
Thanks again for all the feedback. I appreciate you all. Take care.

JoAnn4818's picture
JoAnn4818
Posts: 83
Joined: Jan 2011

Hi Shelly,

I was diagnosed with Triple Negative Breast Cancer in September 2010. I had chemo after my single mastectomy and I was able to work during that time. I took the chemo on Thursday, got my Neulasta shot on Friday and was back to work Monday or Tuesday of the following week. Since you're triple negative you'll probably be getting chemo every other week. I was able to telecommute the Friday after chemo which helped a lot. I felt fine but my face turned bright red due to the steroids! I did get some unpleasant side effects from the chemo and I got some pain from the shot but the pain only lasted a day (Sunday). Once I got the first one done and knew what to really expect they got a little easier. Remember to drink, drink, drink. I always had a drink with ice cubes I could chew on during chemo. Some people say it helps prevent mouth sores. I didn't get mouths sores so maybe it worked:)

I'm wishing you the best and hoping your chemo goes well! I'll be thinking of you.

JoAnn

Cinkal's picture
Cinkal
Posts: 161
Joined: Jan 2011

I had adramyacin/cytoxin for my first 4 rounds of chemo. I had little side effects. Fatigue was my biggest symptom. The first 3 days was the most tiring. I was still able to do my daily routines and take care of my kids, age 10 and 8 at the time. My Mom would help out the first several days. I would take several cat naps a day. I didn't have to work. That would have been challenging. By the second week I would feel "normal" and then I would have to go back for another round.
The nuelesta shot did help me from getting sick. My daughter got pnemonia and both kids had the stomach flu. I had to take care of them and never got sick.
My advise is to drink plenty of water, eat healthy, and rest when you can. Ask for help when you need it. That is something I did no do enough of.

shellywahl's picture
shellywahl
Posts: 11
Joined: Apr 2012

It's the day after A/C chemo and I'm a little nervous to say I'm feeling 'normal'. Gave myself the Neulasta injection this morning and no issues so far. On my first round of Ixempra chemo I was hit HARD by fatigue. Did anyone experience delayed fatigue? My face and chest are beet red, maybe from the steroids? In any event, thanks again for the comments and support. You gals are great!

survivorbc09
Posts: 4378
Joined: Jun 2009

Shelly, it's good that you are not having any issues and I pray that will continue. I didn't have chemo, so, I don't know about the side effects you are asking about. I know that one of the pink sisters that have will be able to answer your questions.

Good luck and I pray you continue to feel good,

Jan

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

How was going back to work Shelly? Was it alright? Did you feel ok? Praying you are doing better.

Hugs, Diane

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

I hope you're feeling good throughout the entire experience. I can't say the same for myself. AC kicked my b&tt! And so did nuelasta but this started 3 days after. hmmm...to think of it, my pains came from the nuelesta, but the side effects from the AC were cumulative (NOT FUN). But everyone is different and you might actually experience no side effects. My worst side effects were chronic constipation and pains. I had other little issues that developed later on, but those were the worst.

I hope you continue to do well with your chemo treatment and this goes by pretty quickly.

Nuelesta works! It helps keep your numbers up so you can get treated as scheduled.

Hugs!

p.s. whatever you do and however you feel, DRINK A LOT of water!

desertgirl947's picture
desertgirl947
Posts: 510
Joined: Oct 2012

My chemo was AC every other week for four infusions; then it was T (taxol) every other week for four infusions. After each infusion, I'd go back the next day for a shot of Neulasta.

My numbers were good throughout my chemo (finished in mid-July), and twice my doctor thought about not having me get the shot; but he opted not to take a chance on that. As it was, I did not have to go back the day after my final infusion for the shot.

Neulasta did not bother me too much until nearer the end of my chemo. I thought it was the taxo, but doctor thought it might be the Neulasta. I knew to expect aching legs, enough to affect my sleep, about three days after my shot. The aching would last about two days. The achiness improved when I took Aleve (0r its equivalent). The week I did not have the shot, I did not have the achiness.

I decided, as I went through chemo and then radiation, that reactions can vary. I have contacts who struggled with the side effects of chemo while others had it fairly easy. The shot affected different ladies differently. Same with radiation and its effect on the skin. Some had skin issues (me included); others did not.

My doctor preferred that I not work while I had chemo, as I worked with young, loving, germy kids in a school -- my immune system was compromised. During radiation therapy, I worked half days (because of my schedule); but that changed when I had some problems with burns and had to do some treating of them at home. I had decided that I was not going to sit around and wait to see how radiation would affect me -- I was expecting fatigue, not burns -- I would during this time, unless I came to a point where I knew I needed to step back. The point came when I had the burn problems. That, though, probably was a challenge for about 2½ weeks; I healed quickly.

That said, you will get through this. In the big picture, this challenge is over such a short period of time. Once you are on the other side of it, you will feel great. I do.

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