New to the Board
 

I am new to this board but not to BC. I was diagnosed with Stage IIIA BC in December of 2004. I was scared to death. I had a 5 year old son and a four month old daughter who needed me. I underwent a lumpectomy, followed one week later with a mascectomy. I underwent chemo and radiation followed by 6 months of Herceptin. My first PET scan in Jan of 2005 showed some small spots on my liver that went away with chemo. My doctor followed up with a scan every 6 months. After I finished my Herceptin in April my doctor put me on Tamoxifen. Everything was going great until my last scan in October - the spots on my liver were back. My doctor followed up with a blood test and my tumor markers were up to 88. Now for the GREAT NEWS! My doctor took me off of Tamoxifen and restarted Herceptin weekly for four weeks. I just got my last blood test results and my tumor markers dropped to 52.7. My doctor is going to continue the Herceptin for another month and do another scan and blood test. If everything keeps going well I can stay on the Herceptin for a while and not have to repeat the chemo,

HERCEPTIN REALLY WORKS!!!!!

Wow, that's really great news. I wish you all the best and continued success on Herceptin.

Jen

I understand
 

Hi, I am also new to the board and to BC. I totally understand your feeling of needing to stick around for your children. Leaving my daughter is my biggest fear. I am so happy to know the Herceptin is working. There is hope.
Lisa

Welcome to the board and congratulations on your success. I also had liver mets, but they have been gone for at least the last 3 months thanks to Taxotere and Herceptin. Best wishes to you.

Vanessa,
I'm really glad to hear you're doing well on herceptin & taxotere. I've been doing hormonal approach w/ herceptin but have not responded to it and now have a spot on my liver. I'm due to start taxotere today, 1 x every 3 weeks w/herceptin schedule. My onc gave me choice of taxotere or navelbine to combine, I went w/ taxotere just because it's better known, and I figured I'd try the more severe drug while I'm still strong and functional. Were you also given that choice? And, of course I'm curious, how long after you started did you loose your hair? Thanks!

That is great news!

Thank you for telling us about it, we certainly appreciate it.


-----Kevin and Sue-----

Oh yea, I forgot to answer the hair question. I was put on the once a week taxotere regimen, instead of the 3 week and it is at a lesser dose, so I did not lose all of my hair. I lost probably 2/3-3/4 of it. It is very thin and looks brittle. Originally, I was supposed to do the 3 week regimen of chemo, but when my doctor found liver mets, she put me on the 1 week regimen. She told me that on the 3 week regimen, I would have lost all of my hair. She told me before I started chemo, that on the 1 week regimen, I probably would not lose all of my hair. The hair loss started probably within about 2 weeks. Some of the women I do chemo with said that they lost all of their hair within 10 days. They were on the 3 week regimen.

I am glad to hear you are going on taxotere. My doctor really believes in the taxotere/herceptin combination. Good luck.

Vanessa, thanks for your response. I'm kind of confused about what to expect with hair loss now. When I went yesterday the nurse told me I may not lose all my hair and don't go shaving it off just yet coz I'm on a low dose. My onc said I'm not low dose for my smaller body size. Guess I'll just have to wait and see. I did really really well with the taxotere, though, so I'm happy about that. Thanks again!

Virginia girl,

What is alternative chemo? Just curious. I saw it under your name, with your stats.

Karen

Virginia Girl
 

I'm curious too, what is alternate chemo?
Re Taxotere, I'm so glad I did have it but ..... Did you get peripheral neuropathy as a result and if so does it still bother you in any way and did you get muscle wastage in the legs?
I had weekly doses of Taxotere 3 years ago, scheduled for 18 but could only tolerate 15 before our new onc said to stop it. My hair came out a bit a day until eventually it all disappeared, but I found it didn't bother me this time, so I was glad about that.
Barb

Vanessa
 

Whoops, must have got up too early this am and got the messages muddled!! Should have addressed the Taxotere query to you Vanessa. This is what I wrote in error to Virginia:
Re Taxotere, I'm so glad I did have it but ..... Did you get peripheral neuropathy as a result and if so does it still bother you in any way and did you get muscle wastage in the legs?
I had weekly doses of Taxotere 3 years ago, scheduled for 18 but could only tolerate 15 before our new onc said to stop it. My hair came out a bit a day until eventually it all disappeared, but I found it didn't bother me this time, so I was glad about that.
Barb

Hi Barb,

I do have loss of feeling in my fingers. I have dropped and broken so many dishes lately. I don't think I have had any muscle wastage in the legs, but I already had restless leg syndrome and chemo seems to have made it worse. My oncologist stopped my taxotere a little early, because I had gained so much weight and was so puffy. I will still be on Herceptin until June, 2007. Did you have to start taxotere again?

Hi Vanessa
Good to hear from you. The PN is a real nuisance and I don't know if you can get weekly B12 vitamin injections recommended, it might just help alleviate the loss of feeling, it's hard to describe isn't it? I have it very badly in my toes and feet and lose my balance sometimes. I laugh at it now, what else can you do, but I get a sensation like there is something crawling on my leg, then sometimes I get prickling pains, as I said it's a real nuisance!! I'm learning more and more to cope with it, but I left it too late to hear about the B12 injections which might be worth a try. My fingers are numb but now much improved over time. The restless leg thingy, even now, I take a periodic dose of Zinc liquid which I found surprising to help (from a naturopath), but of course, you'd need to get that passed by onc. Here, they say it's OK to take it. Seems like you escaped the muscle wastage bit!! Didn't miss much!! I got so that I couldn't walk more than a few steps, everything became such an effort, but once I'd stopped it, did exercises including pool exercises, all is well again in that regard. I stopped Taxotere 2 years ago now, glad I had it and I feel sure it helped me get where I am now, but I hope I never need it again!!
The herceptin, because I'm stage 4 and HER2+, I can take it indefinitely here in Aust, well at least until they decide $$ is more important and they stop the funding, heaven forbid. However I've been asked if I'd consider coming off it. My family are not keen on that idea!
Must go
Barb
daisy10@westnet.com.au

Hi Vanessa
Good to hear from you. The PN is a real nuisance and I don't know if you can get weekly B12 vitamin injections recommended, it might just help alleviate the loss of feeling, it's hard to describe isn't it? I have it very badly in my toes and feet and lose my balance sometimes. I laugh at it now, what else can you do, but I get a sensation like there is something crawling on my leg, then sometimes I get prickling pains, as I said it's a real nuisance!! I'm learning more and more to cope with it, but I left it too late to hear about the B12 injections which might be worth a try. My fingers are numb but now much improved over time. The restless leg thingy, even now, I take a periodic dose of Zinc liquid which I found surprising to help (from a naturopath), but of course, you'd need to get that passed by onc. Here, they say it's OK to take it. Seems like you escaped the muscle wastage bit!! Didn't miss much!! I got so that I couldn't walk more than a few steps, everything became such an effort, but once I'd stopped it, did exercises including pool exercises, all is well again in that regard. I stopped Taxotere 2 years ago now, glad I had it and I feel sure it helped me get where I am now, but I hope I never need it again!!
The herceptin, because I'm stage 4 and HER2+, I can take it indefinitely here in Aust, well at least until they decide $$ is more important and they stop the funding, heaven forbid. However I've been asked if I'd consider coming off it. My family are not keen on that idea!
Must go
Barb
daisy10@westnet.com.au

Liz (Virginia Girl)-

Don't shave your hair! My onc told me I'd lose my hair, the nurses said to hold off and see, and they were right. mine thinned only slightly. I had taxotere both in the weekly regime and the every 3 weeks way, and no hair loss either way.

Good luck with it...
Shell

With Taxatere you shouldn't loose your hair. Now if you get Adrymiacin (spelling??) you will definitely loose your hair. If you get the Arrymiacin you can expect to loose your hair approximatley 2 weeks after your first infusion.

Thanks for the input everybody! It's amazing how differently everyone responds to the various drugs. No sign of any hair loss yet, anyway! As for the alternative chemo I did, it's called insulin potentiation therapy, uses the idea that cancer cells are sugar hungry to open up the cell so you can administer much lower doses of standard chemo drugs. You can google it. A homeopathic doctor I saw recommended it. This time around I decided to try the conventional approach, hopefully it will work.
Peace,

Liz