New to all of this

simplygrace

Hi Ladies

I've been a "silent stalker" LOL on here. Your posts have been really helpful for some of the questions I've had. I'm a 35 year old mother of 3 who was diagnosed with ductal carcinoma in Nov 10 with 4/15 nodes positive and I'm triple positive (BRCA-). Still don't know what all that means exactly. I've already had the the mastectomy on one side (left the other breast alone) and have the tissue expander in and went through my first two rounds of a/c chemo. Two more to go! The next step will be taxol with herceptin weekly for 12 weeks then herceptin after that.

Do any of you ladies know what to expect with the taxol/herceptin treatments? Like does your hair start to come back and how fatigued will I be and how long do the treatments take?

I appreciate any help here and all of you are in my prayers!

Simplygrace

jessiesmom1

What to expect from Taxol
I have triple negative breast cancer. 2 of 22 lymph nodes were positive. I had a mastectomy on the right side which was followed by 4 rounds of A/C and then 12 rounds of Taxotere. I had a tissue expander put in at the time of the mastectomy. I can't comment on Herceptin as that is not part of the treatment protocol on someone who is triple negative. The taxane class of drugs almost always causes hair loss. My hair did not even begin to come back until about 6 weeks after my last infusion. It has been about 6 months since my last round of Taxotere and my hair is kind of the length of Halle Berry's or Michelle Williams' hair. I can now go out without a wig or hair covering and not feel like people are staring at me.

While most people do better on Taxol/Taxotere than they do with A/C that was NOT the case with me. I was usually in the doctor's office for 3 or 4 hours with each Taxotere infusion. That included the blood draw and the office visit with the oncologist. The fatigue was cumulative with each treatment - meaning more tired for a longer period of time with each round. I lost 45 pounds because I just could not eat - taste buds were affected as was the desire to eat. I became dehydrated and had to be given IV fluids several times because of vomiting and diarrhea. Lost 8 fingernails and 2 toenails. Lost all hair everywhere. Still have eyes that water like a faucet. I never missed a treatment or had to have the dose reduced.

Now I am going to physical therapy 3x/week (developed frozen shoulder) and am taking the LIving Strong Living Well exercise class at the Y 2x/week. It is specifically for cancer patients/survivors who have become deconditioned due to the disease and its treatment.

Hopefully this has been of some help to you. You will probably get a lot of responses. Each one will be just a little bit different from the others. Good luck and let us know how it goes for you.

CR1954

Simplygrace...
Welcome! I'm glad that you have found some useful information here and as you may already know, you can also find understanding and encouragement from the good sisters (and brothers) here.

I had Herceptin every three weeks for a year. I had little or no side effects and once you are on Herceptin alone, your hair should come back.
I have seen where others on here had a bit of aching or fatigue from Herceptin, but I guess everyone is different and I can really only speak for my experience.

CR

disneyfan2008

funny...stalker....
I had DCIS but I never heard and still dont' know any of my #s etc., nor know what they mean (even if did have that info)

Just wanted to say HI, I can't give any input in in ref: Taxol-I am on tamoxifen!

jnl

CR1954 said:

Simplygrace...
Welcome! I'm glad that you have found some useful information here and as you may already know, you can also find understanding and encouragement from the good sisters (and brothers) here.

I had Herceptin every three weeks for a year. I had little or no side effects and once you are on Herceptin alone, your hair should come back.
I have seen where others on here had a bit of aching or fatigue from Herceptin, but I guess everyone is different and I can really only speak for my experience.

CR

Hi and welcome! Sorry that
Hi and welcome! Sorry that you are here due to bc, but, you will find a wealth of love and information here.

I didn't have chemo, nor Herceptin, but, wanted to wish you good luck.


Leeza

Rague

We're all different!
I had 12 weekly Taxol after surgery which was after 4 every other week A/C. For me - Taxol was BAD. It was complete and utter exhaustion. (I didn't need Herceptin.) No hair did not come back for me on Taxol - in fact on A/C I had lost head hair and about 1/2 eyebrows and lashes - on Taxol ALL hair that was left on body 'left'.

Please remember that there are no 2 of us that have the same reactions to any of our TXs.

Susan

tgf

Rague said:

We're all different!
I had 12 weekly Taxol after surgery which was after 4 every other week A/C. For me - Taxol was BAD. It was complete and utter exhaustion. (I didn't need Herceptin.) No hair did not come back for me on Taxol - in fact on A/C I had lost head hair and about 1/2 eyebrows and lashes - on Taxol ALL hair that was left on body 'left'.

Please remember that there are no 2 of us that have the same reactions to any of our TXs.

Susan

triple positive
Like you ... I was diagnosed triple positive. I had a lumpectomy followed by 12 weeks of taxol and herceptin. I had very few side effects. They have so much "stuff" they can give you now that keeps you from having nausea etc. I did have a port "installed" ... so if you don't have one already ... you really should consider it ... especially since you'll be having herceptin for the full year. My port was my best friend. I hate needles and the made it soooooo much easier ... no poking for blood draws etc. Just one little prick ... and that's it.

As far as hair falling out ... I think it's pretty common for it to happen around day 13-18 after the first treatment. I was prepared and had a denim hat ... so when I ran my hands through my hair on day 15 and had a fist full of hair ... I called a friend and told her I was on my way over for her to shave my head. She did ... then I put my hat on ... and we went out to dinner. :-)

All other side effects were manageable. They're different for everyone. I got rashes ... a few bloody noses ... nail problems ... oh ... and constipation ... etc. ... but nothing that I couldn't manage. I'd check with my oncologist ... and go from there (dermatologist etc.)


And ... you are at the right place here on this discussion board. When I was going through chemo and radiation I had a zillion questions ... and I finally realized that no question or comment was "off limits."

Hopefully your "chemo road" will be as smooth as I had it ...

Take care and keep us updated ...

hugs.
teena

simplygrace

tgf said:

triple positive
Like you ... I was diagnosed triple positive. I had a lumpectomy followed by 12 weeks of taxol and herceptin. I had very few side effects. They have so much "stuff" they can give you now that keeps you from having nausea etc. I did have a port "installed" ... so if you don't have one already ... you really should consider it ... especially since you'll be having herceptin for the full year. My port was my best friend. I hate needles and the made it soooooo much easier ... no poking for blood draws etc. Just one little prick ... and that's it.

As far as hair falling out ... I think it's pretty common for it to happen around day 13-18 after the first treatment. I was prepared and had a denim hat ... so when I ran my hands through my hair on day 15 and had a fist full of hair ... I called a friend and told her I was on my way over for her to shave my head. She did ... then I put my hat on ... and we went out to dinner. :-)

All other side effects were manageable. They're different for everyone. I got rashes ... a few bloody noses ... nail problems ... oh ... and constipation ... etc. ... but nothing that I couldn't manage. I'd check with my oncologist ... and go from there (dermatologist etc.)


And ... you are at the right place here on this discussion board. When I was going through chemo and radiation I had a zillion questions ... and I finally realized that no question or comment was "off limits."

Hopefully your "chemo road" will be as smooth as I had it ...

Take care and keep us updated ...

hugs.
teena

Teena
Thank you so much. I do have a port and I've already lost my hair. When my hair started to fall out my husband and I shaved it. It was so liberating. I finally had control of something! I just wasn't sure if your hair started to come back while on Taxol...but now I just have to wait it out a few more months.

I love reading the questions and posts on here. They are so helpful. The dr's only answer your questions so much but you really get the truth and the real side effects from everyone going through this. Even though everyone is different it's good to hear it all and if one thing doesn't work for you than you can try something someone else did.

Thank you ladies for all your help and support!

Simplygrace

Eil4186

Hi, welcome, I am sorry that
Hi, welcome, I am sorry that you have to go through this journey, but we are all here for you. I did not have herceptin, but I did have 4 rounds of a/c which as you know causes hair loss. I had 4 rounds of taxol and that also causes hair loss. I don't know if the herceptin would change that somehow. Good luck with your treatments. I'll be thinking of you.

pinkkari09

Welcome Simplygrace
Stalk all you like (I did the same thing before I posted) but it's much better if I get to know you :-) Sorry for the reason you had to find us but I'm glad you got here. I'm triple negative, however; I had 4 A/C and 11 of the 12 Taxol (had to quit early because of the neuropathy). I did lose all my hair, it was sad but not near as bad as I thought it would be. The Taxol wreaked havoc on my nerve endings and I struggled with sleep (took sleeping pills). One thing to watch for is numbness in your hands or feet, make sure you let your Onc. know. The rest of my side effects are already posted on here so I'll save you the repeat. Please come often, let us know how your doing, and be gentle to yourself.
Mountains of Love,
~Kari

Marsha Mulvey

pinkkari09 said:

Welcome Simplygrace
Stalk all you like (I did the same thing before I posted) but it's much better if I get to know you :-) Sorry for the reason you had to find us but I'm glad you got here. I'm triple negative, however; I had 4 A/C and 11 of the 12 Taxol (had to quit early because of the neuropathy). I did lose all my hair, it was sad but not near as bad as I thought it would be. The Taxol wreaked havoc on my nerve endings and I struggled with sleep (took sleeping pills). One thing to watch for is numbness in your hands or feet, make sure you let your Onc. know. The rest of my side effects are already posted on here so I'll save you the repeat. Please come often, let us know how your doing, and be gentle to yourself.
Mountains of Love,
~Kari

simplygrace - love the name!
I had 12 weekly infusions of Taxol also. The first week took much longer than the others because it was a triple dose. That week I also received Herceptin and Zometa - it took about 6 and a half hours. After that it took about two and a half hours each week when I took only Taxol and Herceptin. Seems as though things are done differently in different places, but in my case every Taxol treatment started with drips of Pepcid and Decadron. I guess the Pepcid worked because I was never bothered with nausea or vomiting - NEVER, thank heaven! The Decadron certainly caused sleeplessness. After 2 weeks, my onc cut that dosage in half. As others have already said, the side effects associated with Taxol can include fatigue, neuropathy, very dry nasal passages and eyes, muscle and bone soreness, and effects on your nail beds. One problem that the docs seem more concerned with is if you develope a rash. You may experience all of these side effects or none-at-all. The good news is that they will likely pass after the treatments are done.

As for the Herceptin, it seems to be very tolerable by itself. There are no really obvious side effects and your hair should grow back even while you take it. Happy for you that you have a port, it is so much easier than trying to access a good vein every week.

Best wishes as you continue through your journey.
Marsha

aysemari

Welcome amongst our midst!
Simplygrace,

I am glad after testing the waters you decided to come out and swim with us.
And so sorry that you have to be here. This is a great group of women, very
supportive and caring.

I didn't have Taxol but I am still getting Herceptin. Herceptin by itself was not
too bad at all for me. It was like a slight flu.

The loss of hair is a bit traumatic, even for me the tomboy that I am. So be
prepared for that, if that's even possible. What helped me was cutting my hair
really short to get myself a little more prepared. My hair fell out the second
week after my 2nd treatment.

I hope you keep posting.

Hugs,
Ayse

Katz77

Welcome Simplygrace
QGlad you've come out of the shadows and joined us. You'll have great company. No one knows cancer, chemo, rads, surgries, and all the ups and downs like this board and all the wonderful warriors here.
Your diagnosis is simuilar to mine. I "was" IDC, stage 3c, triple positive, brca- with 28/38 positve nodes. They had said at one time I was18/20 nodes. I figured it didnt really matter cause any node kind of means screwed.
Had all treatments, chemo,rads. Herceptin for a yr. I really didnt have probs with Taxol. Neuropathy is a issue. Hands would burn and crack. Someone here mention some help with preventing that. Mmmm have you experienced chemo brain? Lol Maybe they'll chime in. They said it helped them.
Herceptin didnt affect me at all. Others have said the same. Course fatigue comes with any of this treatments. Just keep moving and taking naps. Hair, Ima thinking I started getting the fuzzies about month after taxol stopped. Its down to the top of shoulders now. I was not a pretty baldy. Ears kind of stick out. Lol
I work in surgery as a surgical and anesthesia tech, so wore hat all the time. Keep the fluids flowing and take freq naps and walk. Hope that helps and sorry I babble so much. Keep on updating. Katz

Megan M

pinkkari09 said:

Welcome Simplygrace
Stalk all you like (I did the same thing before I posted) but it's much better if I get to know you :-) Sorry for the reason you had to find us but I'm glad you got here. I'm triple negative, however; I had 4 A/C and 11 of the 12 Taxol (had to quit early because of the neuropathy). I did lose all my hair, it was sad but not near as bad as I thought it would be. The Taxol wreaked havoc on my nerve endings and I struggled with sleep (took sleeping pills). One thing to watch for is numbness in your hands or feet, make sure you let your Onc. know. The rest of my side effects are already posted on here so I'll save you the repeat. Please come often, let us know how your doing, and be gentle to yourself.
Mountains of Love,
~Kari

Welcome Simplygrace! Love
Welcome Simplygrace! Love your name! You stalk here all that you want. Many have and still will. Just glad you finally introduced yourself.


Wishing you good luck with your treatments and keep us updated.


Hugs, Megan

Alexis F

Eil4186 said:

Hi, welcome, I am sorry that
Hi, welcome, I am sorry that you have to go through this journey, but we are all here for you. I did not have herceptin, but I did have 4 rounds of a/c which as you know causes hair loss. I had 4 rounds of taxol and that also causes hair loss. I don't know if the herceptin would change that somehow. Good luck with your treatments. I'll be thinking of you.

Sorry that you ever had to
Sorry that you ever had to come to this site, but, you are now with survivors, pink sisters, that will be praying for you and offering support and advice for you.

I am sending prayers and cyber hugs,

Lex

new2me

Katz77 said:

Welcome Simplygrace
QGlad you've come out of the shadows and joined us. You'll have great company. No one knows cancer, chemo, rads, surgries, and all the ups and downs like this board and all the wonderful warriors here.
Your diagnosis is simuilar to mine. I "was" IDC, stage 3c, triple positive, brca- with 28/38 positve nodes. They had said at one time I was18/20 nodes. I figured it didnt really matter cause any node kind of means screwed.
Had all treatments, chemo,rads. Herceptin for a yr. I really didnt have probs with Taxol. Neuropathy is a issue. Hands would burn and crack. Someone here mention some help with preventing that. Mmmm have you experienced chemo brain? Lol Maybe they'll chime in. They said it helped them.
Herceptin didnt affect me at all. Others have said the same. Course fatigue comes with any of this treatments. Just keep moving and taking naps. Hair, Ima thinking I started getting the fuzzies about month after taxol stopped. Its down to the top of shoulders now. I was not a pretty baldy. Ears kind of stick out. Lol
I work in surgery as a surgical and anesthesia tech, so wore hat all the time. Keep the fluids flowing and take freq naps and walk. Hope that helps and sorry I babble so much. Keep on updating. Katz

I have/had chemo brain
OK - i'll chime in here on chemo brain - It wasn't anything serious or anything - I would just forget a word or a name right in the middle of a sentence. Also when I would talk - to me I sounded like I didn't make much sense. I was/am still able to multitask it was just more in remembering names and words.

I have to continue herceptin to complete a year. and like what everyone else said - I am having no side effects. can't even tell I'm getting it

Hope this also helps you.

good luck and God Bless

Kelly

Ritzy

new2me said:

I have/had chemo brain
OK - i'll chime in here on chemo brain - It wasn't anything serious or anything - I would just forget a word or a name right in the middle of a sentence. Also when I would talk - to me I sounded like I didn't make much sense. I was/am still able to multitask it was just more in remembering names and words.

I have to continue herceptin to complete a year. and like what everyone else said - I am having no side effects. can't even tell I'm getting it

Hope this also helps you.

good luck and God Bless

Kelly

Hi! Wish I could help you
Hi! Wish I could help you with some useful info, but, I had no chemo. But, I can see that the pinks sisters that have are helping you out.


We are a good, supportive group. So, come as often as you want and keep us updated.


Sue

simplygrace

Ritzy said:

Hi! Wish I could help you
Hi! Wish I could help you with some useful info, but, I had no chemo. But, I can see that the pinks sisters that have are helping you out.


We are a good, supportive group. So, come as often as you want and keep us updated.


Sue

Thank you dear ladies for
Thank you dear ladies for your support and knowledge. I have gotten slight "chemo brain" loosing track of what I'm doing and forgetting what I'm talking about but that even happens when you have three kids like I do LOL So that's not that big of a big deal.

Amy

carkris

simplygrace said:

Thank you dear ladies for
Thank you dear ladies for your support and knowledge. I have gotten slight "chemo brain" loosing track of what I'm doing and forgetting what I'm talking about but that even happens when you have three kids like I do LOL So that's not that big of a big deal.

Amy

I had AC and taxol. I had
I had AC and taxol. I had severe stomach and bowel issues, more with AC than taxol. Everyone is different, some people had issues with neulasta it wasnt as bad for me, (not fun but ok) I lost my hair and it did not come back until after chemo was done, a couple of nails slightly discolored but I didnt lose them. I got a taxol rash on my face, and unfortunately neuropathy. I had chemo brain which has significantly improved. I still forget things but it isnt too bad. I am glad I did it and know I have done what i could. life is good afterwards and my hair is curly. I also have had it colored which I love being my "old" color. Life gets on to a new normal. did not have herceptin so cant comment on that. Also some people have their hair start growing back on chemo, some people lose their brows and eyelashes more than once. Hugs.

renee1822

I'm triple negative too
I was diagnosed in August 2010 and had 4 rounds of the AC and 4 rounds of Taxotere. I was fine with the AC just alittle upset stomach but the pills I was given took care of that. I had problems with the Taxotere my hands and feet looked as if I had a terrible sunburn and hurt so bad but I struggled through it and finished my last treatment just before Christmas. I just started radiation treatments and have done 2 of 36 treatments.
I'm sorry that you are here but this is a wonderful place to talk or vent or to just get questions answered from people who have been down the same path. Keep your head up and just keep thinking positive thoughts.

Hugs to you
Darlene

cahjah75

Simply Grace
just wanted to welcome you to the site. I had different chemo cocktail. Wishing you the best.
{{hugs}} Char