Why is my chemo seem so different?

[Chelee]

I for the life of me CAN'T understand what is going on? My first chemo was Herceptin, Taxotere, & Carbpotin. Had a rough time of it after chemo..normal side affects. Set-in about day three there after and I was misrable. (But that is not my problem here.)

Included was weekly herceptin in my treatment plan. Some know my story. But to TRY to make this short. Third week of herceptin, had breathing problems and landed in hospital for 10 days. ( I believe due to LOW wbc of 116) My oncologist was leaning towards the herceptin being the problem. Who knows? All I know I had the full LOADING dose of herceptin the first time with NO problems...then two weekly doses...no problems...so he can choose what he wants to blame the hospital stay on? (I think low wbc...but we will see...I am back on same tx plan)

So now I have recovered enough that we have got me back on a schedule of chemo. After I landed in the hospital...my oncologist decided to have me do a "concentrated" dose of the three drugs I am on. (Herceptin, Taxo, Carb.) That way I would just come in every three weeks instead of one full cycle of chemo with added weekly herceptin.

Well...thats where I get confused. The first time around I had chemo as mentioned above with all three drugs. I was TIRED, horrid taste in my mouth, no appetite to speak of. Lots of bone pain in different places. Some rib pain. Some numbness in knuckles and hands that came and went. Feeling nauseated but never did actually get sick. All kinds of other things. Not a easy time...thats for sure. But got through it.

So the SECOND chemo was SUPPOSE to be a "concentrated" dose...that would hold me for three weeks. That was CAKE compared to the first time? I was expecting the worse...and it was NOTHING even close to the first time??? Even that taste in my mouth was hardly there. No aches or pains...just felt a tiny bit tired for about two days if that. And that could be from anything. Nothing was hurting...I COULD eat anything...had a GREAT appetite which sure was NOT LIKE THE FIRST time I had chemo. I played HECK to eat 1st time around. Just everything was totally different. Almost like having nothing in comparsion. I would think the concentrated dose would be worse then the full cycle followed by weekly herceptin?

So now...I told my NEW oncologist I want to go back to my old schedule. The three, followed by weekly herceptin. She is all for it. So now this is my third full chemo. I went Monday and had the Herceptin, taxo, & Carb. I felt so so the first two days...then by Wednesday it was all down hill. Wednesday, Thurs, and Friday was just horrible...just like the FIRST time. All the same side affects as the first time.

Can ANYONE please explain to me WHY having my chemo where you only come in and do it ONCE in three weeks would be SO EASY in comparision to the weekly dose? Makes no sense to me. I asked my infusion nurse if I got the SAME amount of herceptin, and the other two meds when I did it the every three weeks way. She said yes...it adds up to the same.

I would think having the concentrated dose to hold you over the three weeks would have MORE side affects? But it was a piece of cake in comparison to the two I had the other way. Anyone have a clue why this would be?

I go tomorrow for my weekly herceptin and plan to ask my infusion nurse again...now that I have more to compare it with then before. This just makes no sense to me.

Has anyone found having their chemo EVERY three weeks only is easier then the weekly? (Meaning the three drugs, followed by weekly herceptin) I hope this makes sense? I have bad chemo brain this week...I can't think right or type it seems.

Chelee

--------------------------------------------------------------------------Stage IIIA, Her2/Neu 3+++, Er & Pr positive, Richardson scorce 9 of 9.
5 of 16 positive nodes.

[Her2nSue]

Hi Chelee,

I'm sorry that I have nothing to tell you about why your treatments are acting so strangely, but just wanted to give you a shoulder to help you through the confusion and feeling sick from the side affects. It's miserable when you feel so miserable, too. As for your chemo brain....tell me about it. I swear at times I'm losing my mind. It's so frustrating.

Hang in there, I'll be thinking of you and hope what little support I can give is helpful to you.

Sue

[Lauriemn]

Hi Chelee, I had 4 aAC and then 12 weekly taxol/Herceptin. I had different reactions after every treatment. I got a consistent dose through all of the rounds, yet my side effects varied tremendously. Some weeks I felt great, other weeks I couldn't get out of bed.

It may not have anything to do with the dosing.

Good Luck!
Laurie

[Jade]

I had 4 rounds of EC (every 3 weeks) followed by a year of Herceptin (every 3 weeks, still on it). I too had very different reactions with each EC infusion, even though I was assured that the dose remained the same. Doesn't make sense to me either. Good luck with your battle.
Regards,
Jade

[michele u]

Chelee,

I think the taste in your mouth might be the benadryl before the Herceptin infusion. I remember that everytime they would push that through, instantly i would taste it. Chemo is so hard to predict. your side effects might be due to all of them together. But they say that they work better when given together, so it's a catch 22. I refused the benadryl after several Herceptin infusions, due to the taste thing. The taxotere is giving you the achy problem. That does get better. I think the weekly infusions of herceptin would probably be easier, due to the lower dose you would have to get. But the dr's have the final decision. If you have any other specific questions, feel free to email me. I'm a RN so i can try to help you. mulmer@mainstaycomm.net

[cherylynnie]

Chelee,
I had 4 AC and then taxotere for 12 weeks. The AC was every two weeks. My first doses I was very tired and constipated. My second one was the worst and I believe it was because my white count was .7 that day. but once they got that under control the 3rd and 4th ones weren't that bad. The steriods kept me from being so tired, then the days when I was off of them i was dragging. I actually was given the option to take the taxotere dense dose or over a three week period. I took the first as a full dose and by day 4 I had severe flu like symptoms which lasted for 3-4 days, so I switched to taking the lower dose every week over a three week period. I think as long as my white count was at a reasonable level I handled the chemo better. But the taxotere didn't mess with the white count like the AC did. I finished the taxotere and about 12 days after I was done I started with joint pain in the heels of my feet and my kneees and my hips. The pain hasn't gone away yet and it has been three weeks since it started. I am on 3 weekly herceptin now, had a rash with the loading dose and now they gave me a small amount today to see how I handle it. Then if I am okay they will give me the rest next week.

Stay strong!

[Chelee]

Wow, thanks so much to all of you who replied. I am only on my third chemo followed by weekly herceptin...so this is all pretty new to me. Plus one long delay thanks to a low wbc and ending up in the hospital.

I was just lost as to why each chemo seemed so different. But seems you all pretty much agree that you never really know what to expect...and they all CAN be different. I was beginning to think my oncologist was changing my doses without telling me or something.

How I could feel SO BAD the first time...then get a concentrated dose the second time and feel pretty good. Now I have my third dose back the normal way as the first...and it too was different. Rough the first week...but pretty easy this week since just the herceptin. But I now think alot of it is due to a better oncologist I switched too. She is making sure she gives me the Neulasta...UNLIKE my first oncolgist. Plus she gave me Procrit when my counts were down....the first doctor didn't. Now she even ordered me a Iron Infusion I went for yesterday after my herceptin. My new oncologist is on top of everything. My other oncologist didn't do anything about my low counts. I paid dearly for it too in the hospital. He knew they were low..even told me so...but never told me there was Neulasta to boost your count.

Anyway...THANKS TO ALL OF YOU. It seems from reading all of your posts that the chemo side affects vary alot. I do know the taxotere is the cause of most the bone/joint pain. However this time I got lucky...didn't have much of that on this third cycle. So I guess I will never really know what I will feel like until after each one.

Thanks a million...you guys are great!