How much is too much?

[Kathy S in Tokyo]

I've been on weekly Herceptin since March and three weeks on and one week off Taxol added to that since June and was expecting to finish the Taxol part in early December. My onco now thinks I should stay on a little longer.

This is how my day went today:

I gave a sample for my blood work this morning and was promptly called in for my check-up. My oncologist had printed out results from my Ct scans of July and of last week to show me how much the Taxol (an effective drug in controlling head lice) had shrunk the tumors in my lungs. This was encouraging.

He asked about all the possible side effects and examined my hands, checked for lumps, listened to my breathing, looked carefully for any swelling and asked about the general quality of my life to determine if the treatments have been affecting my quality of life. We discussed extending the Taxol treatments until I notice more side effects and he typed in a schedule for up to 26 treatments in the computer.

So far, the only side effect that is worrisome is the gradual numbing of my feet. For some reason, my hands haven't been affected yet (knock on wood) but my feet feel like I've been skiing all day and my old (not very warm) ski boots were buckled too tightly. This isn't really a problem as I've always been a little clumsy and as long as I wear my SAS shoes or other well cushioned sports shoes, I'm OK. If this neuropathy advances to a point where it changes my gait, I will probably stop the Taxol and, per the original plan, keep up with the Herceptin. There goes the 20 time countdown goal.

I asked to see the bone scan results from a few weeks ago and he showed my that my skeleton had a little illumination on a spot on my upper left rib cage and another spot on my right hip that weren't there last November. As I have no symptoms (pain) the current course of action is to stay on the Taxol/Herceptin menu and keep an eye on the spots. These scans detect trauma (breakdown and regeneration) to bones and it might not necessarily be metastases to my bones and could be a number of things (I am a little clumsy and could have bumped my hip and the rib cage spot was radiated two years ago...). I need to research a little more. I tend to think that it is cancer spread, but feel that the Taxol is probably working on this too. Not shattering news, but still a little dismaying.

So, I'm wondering about other women's experiences in deciding when enough is enough. I know the Herception will keep the cancer from spreading further if the Taxol doesn't wipe it all out anyway, I'll stay on the Herceptin even after the Taxol stops.

[DonnaD]

Hi Kathy,
I have no thoughts for you. Just wanted to say I am thinking of you. I know Sheila will respond to you, she is in a similar situation. Her Taxol has also been extended. For some reason if she doesn't respond send her a private message. She is a gem.

Good luck.
Donna

[Sheila]

Kathy
I am in your shoes....literally. I should have been done with Taxol back in September, but the oncologist upped it for 6 more months/. I have had a great response, but she wants to go the extra mile, it seems when I go off something, the neck nodes come back with a vengence. I have the Herceptin and Avastin too....I have had no problems in my hands, but my lower legs, like from the knee down, within 2-3 days of getting a treatment, I get the leg achiness, and semi numb feet. It makes it hard to sleep at night. My legs feel like they weigh a ton...or like I have run a marathon! Other than the nosebleeds, and Decadron Weight Gain, I have found the Taxol easy to take....I just don't relish 6 more months. But, I guess she knows best, and it is working. As far as your hot spots go, fx ribs are common if you have had radiation, I had one without radiation and the hot spot in the hip could be arthritis...the bone scans seem to pick up any inflammation...seems they are quite sensitive which is good and bad. Dona D from Crystal Lake just went through a rib xray to confirm the FX rib after a vbone scan showed a hot spot.

[Kathy S in Tokyo]

Thanks Donna and Sheila. I had similar thoughts about the bone scan results. My late Sept. chest x-ray showed no trouble spots in my ribs and I'm not too worried about the new development. I know how you feel Sheila about heavy legs and trouble getting to sleep. I'm glad I wore my fancy high heeled sandals last summer for a last summer of attractive footwear :-). I don(t trust my balance with any sort of heel now.

At this point, I have no new "countdown" date as it will be up to me to decide if the treatment bites worse than cancer. I'm glad that we're tolerating it so well and that it is working so well. Your comment about going that extra mile was just what I thought when he brought up the topic of continuing.

Thanks for the quick replies (it's already bedtime on Tuesday night here).

Hugs,

[Sheila]

Kathy
One thing I forgot, I have found that if I wear TED Hose or compression stockings during the day, it helps my legs/feet at night. You might want to try this, since it seems we are destined to be Taxol poster children!.
Sweet Dreams, hope your legs/feet behave.

[madubois63]

Kathy - Your post caught my eye because of the title. This is the question I keep asking "How much is too much?" I hate that there is no way for the oncologist to know until it's too late. I do not want to scare anyone, but please be aware that too much chemo can cause leukemia. Please watch your counts carefully!!!!! I wish I had stopped as soon as my counts had dropped.

[Esther]

Kathy S. I'm not sure how much chemo is too much, but you can certainly ask for a break from chemo if you are stable and you feel you need it.

In March of 2005 I felt like I needed a break from chemo, I was not NED, but I wanted a break anyway. I stayed on just Herceptin. 2 months later my liver and bone mets were NED! I don't know if it was delayed chemo reaction or what, but I stayed off chemo for 2 1/2 years after that.

It's worth discussing with your onc.