No 6th round for me!!!

kcherub · 08-28-2007, 02:49 PM

Well, I just got back from my Day 10 (which was actually Day 12) appointment, and I am DONE with chemo!!! Unless the doctor comes back on September 7, when I go in for Herceptin alone, and says to go ahead and do #6!

The neuropathy has started creeping into my hands this week, and the feet are still bad. They had decreased the Taxotere by 25% during #5, but it apparently didn't help the situation. I hope it eventually goes away, or at least doesn't get worse. My feet feel like they are alternatively cold, then hot, then being stabbed with needles, etc., etc., etc. My husband works for a neurologist, who said to try Vitamin E, and now that I won't be doing another round, I am going to try that. I know there are other medications I could take, but I would rather not start putting anything else in me until I have to!

I think the main reason I won't be having #6 is the "steriod psychosis". I didn't even know this is what it was called. I thought I was actually going crazy. I found that a small percentage of people who are on steriods get SP, and it almost always doesn't linger in the form of any other mental issues. I was pushing it before all of this!

It was really scary during this last round, and I hope I never have to take steroids again. Isn't it funny that the chemo wasn't all that bad, but the steriods were?!?

I am not sure exactly how I feel about not doing the final round. I think that I would doubt it if I didn't have Herceptin. Has anyone else out there not finished because of side effects? I know some people have to stop because of blood issues...

Thanks so much!

Sheila · 08-28-2007, 06:37 PM

Krista
I hate the steroids too...they just whack me out...I am dragging but I cannot sleep...at least the night of treatm,ent...then it gets better, then time for another treatment. Ijust completed #9 of what I hope is going to be 12...but may be more...what does your onc. say about skipping the last one?

Ceesun · 08-28-2007, 07:13 PM

Yep, I remember those, too, they made me feel a little more aggressive and my onc said "we have to keep an eye on that" --strange/ huh?? Cathy aka Ceesun

Barbara2 · 08-29-2007, 07:53 PM

I went into septic shock after treatment #5; ICU for a week, so we talked about skipping #6. My husband was horrified that I would even think of another treatment but he said I should do whatever it is I needed to do...so I opted for a half dose for #6.

I ended up in the hospital again, but this time not with septic shock; just real sick.

tousled1 · 08-30-2007, 02:51 PM

Krista,

Have you asked about having the decadron decreased? I found/find that the premeds are sometimes worse that the actual chemo.

kcherub · 08-30-2007, 05:46 PM

Kate,

Yes, they have changed my steroid protocol every round since after #1. At one point, I was only taking it Friday morning, Friday night, Saturday morning, Saturday night, and Sunday morning. That seemed to work okay for #3, but then didn't for #4. #4 was the one I posted on ("very discouraged" post). On #5, they prolonged them, but tapered at the end (one morning and night the day before I stopped, and one-half morning and night the day I stopped). I guess the thinking was that slowly going off them would decrease the side effects. She (PA) didn't suggest any other way to do. I guess they have changed the steroid protocol so much, without it working, that they can't make it work without the horrid side effects.

Does anyone know if the steroids are for the Taxotere or the Carbo, or both?

There is also the neuropathy issue, and I think both Taxotere and Carbo are culprits on that one. My neropathy seems to be pretty bad. I have a pretty high tolerance for pain, but I am wondering if others have had it this bad, or if I am just being too sensitive about it? I don't see a lot about it, other than the annoyance factor. I need to ask again how much neuropathy is acceptable, and what is not. She asked me to rate it on a 1-10 scale, and I said an 8. It's very confusing as to how much neuropathy I am expected to live with!

Thanks and take care,

kcherub · 08-30-2007, 05:50 PM

Sheila,

I always see the PA on Day 10. My husband went with me this time, as we wanted to get a real gauge on the office's interpretation and solution to the neuropathy and steroid issue...

She didn't really say anything to try to make #6 seem like I HAD to do it, or that not doing it would be a HUGE mistake. She actually seemed to think that the issues I was having were a good reason to not do #6.

I still have Herceptin for a year, radiation, and tamoxifen. I think that if I didn't have those coming up, it would be a different story. I am going to call my friend who is a nurse there to see what she thinks and to see what the doctor might have said...

Thanks for responding. My computer has been funky for a day or so, and I am just getting back on the board and able to post. Sorry it took me this long to answer you back!

tousled1 · 08-30-2007, 07:51 PM

Krista,

The Decadron is for the Taxatore. When I was getting Taxatore I got Decadron (pills) to take the day before the day of and the day after. I really got wired up and couldn't sleep then all of a sudden on about day 4 I would just crash! Taxatore is the culprit for the neuropathy. I'm now taking Taxol/Carboplatin and I get Decadron as a premed but only via IV the day of treatment -- much easier to tolerate than the Taxatore. I suffer from neuropathy.

kcherub · 08-31-2007, 03:53 AM

Hey, Kate!

I wonder if Taxol could be substituted for Taxotere for a 6th round, if they come back and say a 6th round should definitely be done. I know they have protocols because those protocols work (or happen to be what the study was done on). I wish I knew a chemist who specialized in chemotherapy drugs!

Thanks,

tousled1 · 08-31-2007, 06:29 AM

Krista,

Have they tried giving you the Taxatore over a long period of time -- that is a super slow drip? I know there's a woman at my chemo center who has problems with the Taxatore and they have slowed her drip and now she is tolerating it much better.

Substituting the Taxol for the Taxatore -- it could be done if it was really critical that you receive the last round. I don't think your oncologist would be too keen on the idea however. If you use a chemo agent and you have a recurrence or develop mets in the future you can not use that agent again. Also, with Taxol you'd still need to recevie the Decadron. I don't think you should have any problems with only missing the one treatment since you still have the herceptin to finish, radiaiton and Tamoxifen.

Good luck to you and keep us posted.