Share some effective treatments

I have a friend who was just diagnosed with triple negative breast cancer and I would love some effective treatments to tell her about to keep her outlook positive. Please advise.

I'm so glad we finally have a place too pinkp!  Congratulations on your remission, that is wonderful.

I was diagnosed in Sept 2005, had AC followed by Taxol and 33 rads. No node involvement, 2cm tumor. I was 50 years old when diagnosed.

My name is Tina and I was dx with triple neg idc bc in April 06. I breezed though treatment only for it to come back in both lungs and a lymph node. I'll start xeloda on tuesday and avastin in two weeks. I'm 41 and in great health otherwise. Anyone in the same boat as me ? This is my first visit to this site. I live in Marietta, Ga.

I was diagnosed in January 1998 with er and pr negative, 3 cm tumor.  I had two nodes involved, no angiovascular invasion.  I do not know the herceptin status as this was not a developed treatment option yet.  I had 4 rounds of ac, four of taxol and 33 rads.  So far, so good. I was aged 39 at dx.

Edited by lifeartist59 - Jun 04 2007 at 7:30pm

My name is Tricia and I was diagnosed with triple negative invasive ductal in March of 2006 at the age of 33. I found the 3.5 cm tumor while nursing my 10 month old at the time. I had a bilateral mastectomy in April of 2006, 6 chemo treatments of TAC (T being Taxotere not Taxol)and 36 radiation treatments in fall of '06. I was cruising along just fine until my 6 month checkup. I found a lump on my chest wall which ended up being the same type of BC. After several CT's, a PET scan, & bone scan, they found it is now in both lungs, I have enlarged lymph nodes in my lungs, and a 1" tumor behind my ribcage. They are also looking at my spine because it lit up on the PET scan but I had a clean bone scan. I have had a 2nd opinion at Mayo and they want me to enter a trial of Capsitabine (sp?) plus Avastin. My oncologist says that is a reasonable choice but not her first choice. Does anyone else have any advice to offer or any info. about personal expericence with either of these two drugs. I'm uneasy about the trial because only 2 out of 3 will get the drug, the others will get the placebo. My prognosis has been given to be five years of survival or less. I am now 34 with two little girls, ages 2 and 4, and needless to say, I'm devastated and also confused about what treatment to follow. Isn't Xeloda the same as Capsitabine? This is my first visit to this site too - my husband found it today and showed me. I live in Duluth, MN. Please share any thoughts - thanks!

Hello Tricia.  Jules here, I'm also new to the site and my story is above, just before yours. 

Edited by Jules - Jun 07 2007 at 4:17am

Well there you go I was wrong!!

xxsam

Hi Tricia & Others -

CalGal here.  On my recurr, mets to liver and unrelated kidney cancer dx in 12/05, I did a ton of research before starting chemo.   During the month that it took to get 2nd opinions to convince my HMO to do a liver biopsy, schedule that biopsy and get the results, my 2 cm breast tumor increased 50% to 3 cm.  The rapid growth was unnerving.  I actually was looking forward to starting chemo ... since until then, the cancer was rapidly growing ... and I was not fighitng it.

My research focused not only on triple negs, but BRCA1 and liver mets.  My HMO proposed the standard 4 AC, then 4 Taxol, then scans; which seemed quite standard.  I felt as a triple neg, BRCA1 with liver mets, that standard was not in my best interest.

Instead, I started with 4 dose dense AC.  After the first AC, my visible tumor starting shrinking!  By the 3rd AC, neither I nor my onc could see or feel it!   I kept on with the AC.   I asked for and got a CT Scan after 4 AC's - the breast tumor was gone and the liver mets were reduced!  Since I was so responsive to the AC and my MUGA scans were strong, I did 2 more AC for a total of 6.

Next, I took a break for radio-frequency ablation (RFA) of my liver mets.   That was a huge fight with my HMO.   They dismissed and then denied my requests for it.  But after going to a major cancer center (and paying out of pocket for a special CT Scan) and being told I was a candidate for RFA, my HMO relented.   It turns out they could only find 2 mets (4 originally) ... and that's the 2 they burned up with the RFA!  At that point, 6/30/06, I was a technically NED for bc and bc mets ... now, almsot year later, I'm still NED!!  :)

Based on my research and outside consultations, I really felt that Carboplatin was a great choice for triple negs and that Taxotere was better than Taxol for bc mets ... So I did 5 Taxotere & Carboplatin treatments as an extra precaution.

Note:   Thoughout my entire chemo, I had low wbc counts and had to do the self (or DH) administered Neupogen injections.

Re:   Hair, Neuropothy & Nail-Lifting

The hair loss due to the AC was traumtic, despite intellectually knowing it had to be done and preparing for it with several shorter and shorter cuts ... By the time I was going to start Taxotere & Carboplatin, I had short hair and had "graduated" from the wigs ... I did NOT want to start over with a bald head!

I found a French study that discussed "hypothermia" (cold/frozen) products to prevent hair loss, neuropothy and nail-lifting.   Turns out the products are manufactured in Kansas ... I ordered 3 caps, and 2 prs of gloves and booties.   You put them in the freezer, transport them to chemo in a cooler with dry ice, put them on 15 min before treatment, change the caps every 30 min and the others every 45 min. and leave them on 15 min post-chemo.  It was a bit of work ... my husband did it all (you definitely need someone to do it for you) ... but so worth it ... I SAVED MY POST-AC SHORT HAIR and did NOT get neuropothy or nail lifting. 

NOTE:  The caps do NOT work with Adriamycin!  I only checked to see if they worked for Taxotere & Carboplatin; so if you're interested, you need to check for your specific chemo.   The site is www.elastogel.com

In 3/07, I had RFA of the kidney cancer.  At this point, I'm getting quarterly PET/CT Scans and blood-work.  With my endocrinologist, we're still trying to figure out the source of high-normal to high calcium levels (likely my parathyroid) as well as whether my enlarged thryoid is masking more serious issues ...

I hope you all don't mind that this is so long ... but it all pertains effective treatment ... If you have any questions, feel free.

Best Regards,


CalGal

Pam-

Thanks ...

I'm sorry you're having a horrible time with Taxotere ...  my onc hesitated on giving it to me since she had 2 women who had a awful side effect of red and peeling hands and feet, bad enough to be hospitalized. 

I hope the Neulasta does the trick.   When you do the self-injections of Neupogen, they give you small vials (I had 8 when on chemo every 2 wks and worked up to 16 when on the Taxotere & Carboplatin combo every 3 wks).   The vials are in a box or pill container and you keep them in the fridge (and you could use a insulated lunch bag or for traveling, I bought a plastic cup with lid and Neoprene holder.  I did hear the Neupogen vials were very expensive, around $350 a dose.

I hope the Neulasta works well for you and you feel much better.

CalGal