Milestone: Just Finished 20th Taxol (Questions for Stage IVs)

[KDR]

Well, I've reached a milestone: my 20th Taxol treatment today. Of course, I'm on Herceptin, and take that every three weeks. OK. I was diagnosed Stage IV out of the blue in April, with mets to liver. I had three small lesions on liver. My CEA numbers have dropped from 599.1 to 9.0 as of this week. My first set of scans in October were "significant" "remarkable" and other words in that family. The tumors are no longer palpable, and the liver tumors shrunk by 50-75%. I have not had major side affects at all, just hair thinning, neuropathy, and the worst: hot flashes, occasional joint pain. No GI issues, weight gain or loss, etc. I guess I'm doing alright. If my next scans look good, maybe I'll go on maintenance. At least that's what I hope. So, I'm asking the veterans a question: what happened to you at this point? How much Taxol can a body take? When were you deemed NED? (Well, not completely...). Does this mean remission?
Thanks.

[Sheila]

Karen, I rode the Taxol roller coaster for a year and a half....then it quit working...after that, I switched to navelbine, which also shows great promise for liver mets.....if you are stable, they may give you a chemo holiday.....that is what they call it, not like any other holiday I have ever experienced!!! TDM-1 is also very promising for liver mets...just ask our resident patient, Chrisy!!!!

[Becky]

I have a very, very dear neighbor who was diagnosed with ovarian cancer July 2009. Extensive mets to the lungs and the primary tumor was as big as a rib roast and a second one in the abdomenal cavity was like a chuck roast (literally). She had 4 rounds of taxol/carbo and then had the debulking surgery. She continued on taxol/carbo afterwards. When the tumor marker CA 125 (I think) was in the normal range, they gave 2 more rounds and stopped. About 4 months later the CA125 started going up dramatically and they started again. She has been in the normal range a long time but gets about a 1/3 dose every 6 weeks now and is doing great. My point is, you can take alot if you have to.

[Sherryg683]

I was diagnosed in December 05, stage IV with lung mets. I started chemo, Taxotere, Herceptin and Xeloda (did all three at same time) in January. I did 4 rounds of above. After 4 rounds, my scans came back clear..NED. I was expecting to have to do at least another round but my oncologist told me there was no need to. I continued on with just Herceptin weekly for the first 2 years..having PET/CT scans every 3 months to make sure nothing showed up. My oncologist doesn't doe CEA markers. After that I moved to Herceptin every 3 weeks, which I continue now and will do indefinately. I get scans every 6 months. I never did have to do any more taxols..just herceptin.. I am 5 years out of diagnosis now...I get my scans again in January. If they are clean, I may consider doing scans yearly. My Oncologist told me that I was lucky to have "a complete response" to the initial chemo given. Do I consider that "remission". I don't know..., I just consider myself "cancer free" for the time being and just glad I'm alive and doing well. It's all just terms I guess. ..sherry

[Rich66]

(looking up difference between rib and chuck roast)

[KDR]

Your stories are so inspiring to me. Really. I read this list and feel so much more positive.
Sherry, you are a great inspiration, no doubt! Keep it up!
By the way, I just wanted to let you know that my Antigen 15-3 blood test was ALWAYS in the normal range even though I was Stage 4. It was the CEA (cancer embryonic antigen) that showed how out of whack I was. All that said, the scans are what really show everything. The doctors are undoubtedly rejoicing over my progress with the numbers, but the reality is they need the scans. And I think these liver lesions are going to cause me the most problems. I just feel it.
When you say rounds here, do you mean cycles (a group of three treatments)?
Do we ever go into (full) remission?
Thank you so much!

[Chelee]

KDR,
There are quite a few of the stage IV ladies that have remained NED for yrs on this board. Christine which is the boards founder, Sherry, StephN, Mamacze (Kim), AndiBB, Kim in CA, Chrisy just to name a few. I know there are others...just can't think of them all. So yes...it can and does happen. :)

Chelee

[hutchibk]

I did about 25 tri-weekly Taxol/herceptin treatments (the first 6 of those were with Carboplatin, too) that knocked things back and kept me very stable, until we found the little brain mets. After that, we switched to Tykerb/Xeloda...

I am one who hasn't taken a "chemo holiday" since Sept. 2005, but I am tooling right along, currently on Tykerb/Herceptin, and looking to transition into TDM1 expanded access...

If your onc agrees that you are "quiet, stable, NED, etc..." you could perhaps consider a trial during this time... Dr. Cliff Hudis at Memorial Sloan Kettering told me last week in San Antonio that they have some good things they are researching in trials there for HER2... many of the drugs just have numbers and not even generic names yet.

[chrisy]

I had 6 cycles of T/C/H, which was about 6 months. This was a weekly dose, 3 weeks the whole combo, the 4th week was Herceptin only.

You can read the detail in my signature. Both my oncologists planned to do the 6 cycles, then maintain on Herceptin alone indefinitely (that is, until things progressed). They were, and I agree, firm believers in less is more - that you should conserve your body's resources as much as you can., and if you can take a break fromn the power chemos, you should.

[Jackie07]

Karen,

Congratulations! You have finished the 20 rounds of TH. Below is a link to detailed explanation about 'remission' that I've found [which you are probably already familiar with.]

http://www.chemotherapy.com/treating_with_chemo/remission/goal.html

[KDR]

Actually, I think I should make it clear about "rounds." I have done 20 weekly Taxol treatments. Now I'm on three-week cycles. Tomorrow I see onco, so can you think of any questions I might ask?
Thanks

[Joan M]

Karen,

I had 21 weeks of Taxol once a week when I had early stage breast cancer. The normal protocol would have been 12 weeks. I took the Taxol with Herceptin, and continued on Herceptin for a total of 52 weeks. These drugs followed standard doses of adriamycin and cytoxan.

I went 3 1/2 years before my cancer advanced to the lung and then the brain a year later. Since I had an RFA of the lung and surgery and radiation for the brain met, I've been only on Herceptin since the cancer spread, and have been NED since October 2008.

Joan

[Sherryg683]

By rounds, I meant group of every 3 weeks. So all in all, I was on the tough stuff for 3 months. During this time, I did taxotere, every three weeks, Herceptin weekly and took xeloda for 2 weeks/off one. As far as your question about us going into "remission". I'm sure there are different medical opinions on this, us being stage IV. I usually say "cancer free" when someone asks me. I do know one of the oncologists in the group I go to told me he doesn't use the word "remission" until a patient has been cancer free for 5 years. sherryg

[KDR]

My oncologist says there's no discussing getting off the Taxol for a least a year. She says while I may have had an amazing response and continue to, if I have progression while on maintenance, a recurrence is harder to treat. So, she'd rather I stay on Taxol, since I've had minimal side affects. I may not like it, but I have complete faith in her and what she says goes. I had this vision of being on maintence beginning in early 2011. But we will revisist this question, depending on my progress in July.

[Joan M]

Karen,

Since we have the same oncologist, I admire your attitude. I wish I had it! I'm a healthy skeptic. And you're right about "there's no discussing" it. She's tough, but I like her soft side.

Keep up the good work. Taxol seems to be working well for you. I took it during early stage chemo for 20 weeks, instead of 12. And I went 3.5 years before my cancer advanced.

Also, just answered your PM. Sorry ... it was buried in all my e-mails ...

Have a happy and healthy new year!

Joan