Any triple neg's getting Taxotere & Cytoxan only?

Wink, I asked my onc, and he stated most of these trials he recommends for someone who is at a higher stage than myself. Particularly a Stage 3 or 4. He indicated mine was only 8mm and caught very very early...but unfortunately that one got out and known to be TNBC. So he stated, after the higher stage trials, they go down to the lower stages later for these trials. Well, I'll continue to see what's out there anyway. Thanks for the info!

Dolores

There is also a topic here under:

Forum: Help Me Get Through Treatment

           Topic: Roll Call: Anyone in the Phase III Trial of Bisphosphonates

There are links to information regarding the trial in the main topic.  Also note that most of the women posting are stage I & II.

I lost every single hair on my body!!  It was surprisingly liberating not to do my hair every day, pluck eyebrows, shave.  My symptoms worsened with progressive treatments--diarrhea (pills for that), mouth sores (a mouthwash for that), extreme fatigue, nothing tasted good (7 months later my taste buds are still a little screwy).  By my last treatment I had it down pat--first week, too tired to get out of bed; second week, move to the couch downstairs and some very light household chores but no cooking; third week, start to feel pretty good.  Too bad I didn't get it till the final treatment but it was hard to give in. After the second treatment I was so depressed and angry that I went for therapy.  She put things into such perspective for me.  It wasn't ME making me feel this way, it was the DRUGS.  Once I realized that it got easier.  I did follow the chemo with radiation after a three week break and still experience great fatigue at times but have been gardening, started exercising again, do a lot of housework, volunteer.  Sometimes I have to force myself to get started and when I'm done, I am so totally done that I have no choice but to rest.  As a former Type A this is difficult for me.  One thing to remember is everyone responds differently to treatment which is why the list of possible side effects is so massive!!  But it is certainly doable considering our options.  I have a wonderful husband who stepped right in, who comforted me and took over a lot of the household stuff.  My sister moved in to help for my entire treatment.  How great was that.  So the other advice I have is to accept any offers to help so that you can concentrate on getting better.

Dolores,

I'm reading your posts with great interest and curiosity. March 25, 2009 was the day I received my BC diagnosis of DCIS with 0.3mm microinvasion; similar diagnosis and same day as you. At that time, I knew my cancer was ER-/PR-. Treatment options were lumpectomy with radiation or mastectomy. After much research, I decided to have bilateral mastectomy with immediate DIEP reconstruction June 25.

Pathology following this procedure indicates the cancer is triple negative so I've been actively researching how this affects my chance for recurrence. In addition, there was a positive margin so I'm now looking at how I might address this as well. I've seen a variety of specialists and had a whole spectrum of options, even disagreement among excellent doctors. As all of us know, decision making can be confusing and perplexing. We fall into somewhat uncharted territory for our doctors who are doing their best to guide us to proper treatment and restore our health.

Dolores, would you please explain the reasoning behind your treatment with chemotherapy especially because your nodes were negative?

I'd also love to know if others had triple negative DCIS previous to invasive cancer, or in combination with it.

I look forward to learning more about your experiences and greatly appreciate being able to connect with all of you here. It helps so much!

With gratitude, Kristi

Hello Kristi,

Yes, Wednesday 3/25/09 we became the 1 in 8 women in the World who have been told "You have Cancer". I was told over the phone...what a horrific experience. 

Actually Kristi, my diag was 2-fold. Left breast DCIS in one duct and Microinvasion in another duct. My pathology report only tested the invasive duct which was triple neg. Sentinel nodes were negative (3 were tested). No node involvement.  Therefore, chemo is the "do all" for systemic treatment.  No pill treatment after. My Onc will make that an option for me for prevention purposes. My Stage 1 was .08mm but the most agressive.

Kristi, I visited two doctors from two different states and chose the second opinion. Both indicated mastectomy was not an option since I was a Stage 1 with a tiny tumor and being Triple Neg did not matter. Both also indicated that you can have a recurrence even with Mastectomy. Prior to this, I consulted with other Medical Professionals which one of interest to me was triple neg two different times. The second time, her doctor wanted her to have a Mastectomy but chose not.  She indicated for them to take out ( Lumpectomy ) what they missed the first time.  She has been a survivor for well over 5yrs now after the second time around. Having this information prior to my consultations, I was relieved it was not necessary for me.

Therefore my treatment options were lumpectomy, which I had 2x because one of the margins was not clear...they did not get enough...then I had 4 rounds of chemo w/taxotere and cytoxan and now working on radiation for 6 - 6.5wks.

I hope this information helps! 

Kristi, was your positive margin after the Mastectomy?

Hi all, not sure if this thread is still active but I'm triple negative and am currently going through TC. I've had two treatments so far (Dec. 7th and 29th) and have two more to come for a total of four. Then I will do radiation.  So far, it's not been too bad. I get the Neulasta shot 24 hours after each treatment.  I've been reading through this thread and saw a mention about having the steroid tapered.  I'm going to ask my onc about that because I've felt like I've been hit by a train the day after the steroids are done. I think a taper for even one day after would be helpful.  

If there are any other triple negatives going through TC chemotherapy, it would be great to hear from you!

Sherri 

Donna123 - has your hair begun growing back? I see you're part of a bishponate trial.  What's that all about and how is it going?

Sherri 

Hi Kelley - I don't think this thread is very active.  As you can see I posted here a couple of times early in the year but not a lot of action. There is a thread called "Anyone on just Taxotere and Cytoxan" which I found very useful when going through chemo.  I still check into that thread regularly.  I think you'll find more dialogiue there and will find it really helpful.  Here's the link:

http://community.breastcancer.org/forum/69/topic/697783?page=242#idx_7238

Days 3-5 were my worst but nothing too terrible. You might want to try getting a pixie cut before you do the GI Jane buzz cut. That will give you a few days to get used to shorter hair and to try on wigs with less hair on your head.  I purchased two longer style wigs while I still had my long hair. Once my hair came out, I felt more comfortable in shorter styled wigs (I never had short hair in my life). To put it delicately, since you're getting Taxotere, I'd plan on hair loss.

If you have any questions or if the link doesn't work, please feel free to send me a PM.

Hi!  I'm on the bisphosphonates trial too--ibandronate arm.  I think that there is a thread for the Bisphosphonates trial.  Check it out!

Lorrie 

I had the same treatment back in June and finished in August. Then did radiation for 38 treatments. I can tell you it all went well. FYI lost my hair on day 14 after first treatment and now it's all back and looking normal. I was sick a couple days after chemo. and then mostly just tired. Radiation didn't make me tired but I did burn pretty bad. Ouch! Now even that is pretty well all gone and looking normal. In fact to look at me now no one would probably even know I was that sick just a few months ago. 

Wishing you all the best!

Lisa 

carolinachi - Thanks for the reply.  I am cutting my hair short tomorrow and am getting re-fitted for a wig on Saturday.  I am taking my oldest daughter (12yoa) and my good friend and then out to lunch....I am trying to stay positive - I think the losing my hair bothers me the most - but then I have to remind myself its only temporary!!!  I am 9 days out from my first treatment TC x4. - I am so glad I found this dicsussion board!  Have a great day.

Hi Sherri--

The bisphosphonates trial is going great!  It easy easy to take and I have no side effects.  I'm very happy to be on it!

Lorrie 

Sherri,

I just noticed that you asked me a question about the bisphosphonate trial back in January.  I'm sorry, I don't check this site that often.  I'm mostly on tnbcfoundation.org.  I'm on the Clodronate arm of the trial.  One of the restrictions of the trial is you have to be enrolled and on the study within 90 days of completing chemo.  

 Donna

Sherri,

 Even though you'll be past the enrollment timeframe for the clinical trial, your onc could decide to give you Zometa off trial.  It's worth asking him.  Good luck.

 Donna

Maybe I've already written on this threat...not sure but my feelings about this are very strong.  First of all, I see a cardiologist who told me that the amount of AC you get does not often lead to heart damage.  I think he said you have to get at least above 400 to see that...but I think it was even higher.  I did neoadjuvant chemo and AC slammed my tumor down to not feelable after JUST TWO DOSES.  We are all different and we never know which we are but AC was my wonder drug.  Then I did Taxol which I think did a clean up act for me.  My only reget is that I stopped with 4 doses of AC.  I wish I knew at the time that I could have had one or two more treatments.  By teh time of surgery, my invasive cancer was gone except for a tiny bit in one node....