Triple Positivers/Chemo regimens and experiences

Ondagrow

I am ER+/PR+, HER2

After a year of Herceptin, will I have to take an oral medication for 5 year?

Can someone share their experience please...

I am a newbie...I get port inserted Monday the 26...I start Chemo the following Monday the 2...My Med Oncologist an I will discuss my regimen/treatment on the same date it is dispense...

Omaz

Hi, I am also newly diagnosed too.  My oncologist is recommending carboplatin, taxotere, and herception 6x; continuing on the herceptin out to a year. Hormone therapy and radiation treatment.  I have lumpectomy surgery next week. 

Have you had surgery?  

There is also the '2010 Sisters' topic for those of us just diagnosed this year that is active if you are interested and haven't seen it yet.

Ondagrow

 Hi Omaz,

Looks as if we have the same regimen...I had chemotherapy today I will be taking Herceptin, Carboplatin, and Taxotere... My next treatment is August 23, 2010...

Ondagrow

Is there anyone else who is triple positive...

Morticia33

I am triple positive also.  I have had my surgery, chemo, and am now finishing the Herceptin every three weeks.  I am also on the Tamoxifin and will be for the five years I guess.

jsw19

I am also triple positive.  I started Herceptin last month and will be adding on the Taxotere and Carboplatin next week.  I will do a total of six cycles of TCH then continue the Herceptin until next July and Tamoxifen will be added in once the chemo is done.  Usually they recommend 5 years of Tamoxifen though I think if you are post-menopausal they might consider a different drug, I'm not really sure since I am pre-menopausal so they have already told me I will definitely get Tamoxifen. 

If you haven't seen it already, in the Chemo forum there is a thread called "taxotere, carboplatin, and herceptin".  Some of those women are also triple positive, since they are getting herceptin they are all at least HER2+ but many are triple positive.  So you may also get some helpful info there.

lisasinglem

I'm triple positive - I've seen some of y'all here before (Omaz & Sohard).  I'm getting 6 rounds of TCH (started Monday), and finishing out the 12 months of Herceptin.  Then I'm getting rads (had lumpectomy in July).  Then my oncologist told me that there was some new research out there saying that Tamoxifen isn't as effective for Her2Neu +, so I am going to get shots to shut down my ovaries (or get an ooph) and take an AI like Arimidex instead.

Round 1 is kicking my ass.  I wish you all the best for an easy time with all of it!

navygirl

I was triple pos. I did 4 rounds of dense dose A/C, 12 rounds of Taxol and Herceptin, then weekly Herceptin for 5 more months. I was allergic to the Herceptin, so they only did the load dose then put me on weekly for as long as I could tolerate it. The premeds they gave me to combat the allergy started wearing off so we stop short of the goal. I had a bilateral mast. so no radiation, and I had my ovaries out because I couldn't do Tamoxifen (liver disease). So far, I've been on Arimidex and now (with better luck so far) Femara. 

I see you just started chemo this Monday; I hope the SE's are not bad for you. Remember, if anything is to the extreme do not be shy about calling the onc. to discuss it. They can adjust nausea meds, add things to your infusion to make it easier to bear (saline, benadryl, ativan) so don't be a hard head and try to stick it out

Best wishes...I hope all of you just starting out have a relatively smooth journey on this leg. Rest up and drink lots of fluids! 

nanadada

Hello:

Came across this forum...I was diagnosed 9/09 and finished my tch in March 09...Its doable ladies, the fatigue was my biggest issue! hang in there, I thought it would never end, but IT does, promise!!! Im still doing herceptin very 3 wks, will finish that in november.I am premenepausal, but my periods ended 1 month after starting tch. My oncologist said that AI are more effective in triple positive BC. I am on lupron to keep me menepausal in order for me to take aromasin. Its 1 pill a day for 5 years. The side effects are way less then tamoxifin. The truth is i was afraid of taking tamoxifin, so when my oncologist told me that aromasin was top of the line foe triple postive, it was no brainer for ME! Being menepausal isnt thrilling, but for me i understand the importance. My tumor was 86% estrogen positive, so estrogen IS my enemy!  I will eventually get my ovaries removed, but for now i still have to go thru my reconstructive surgeries...I thing at a time. Hope this helps...Wishing you well

Ondagrow

nana,

thanks for the info...im fatigued...cant type alot...

they gave me zolodex instead of lupron...

Omaz

Hi sohardbnme, I hope you feel better soon!  This is day 4?  I read others had a hard time with this day.  You have one treatment out of the way!!!  Hang in there!!

SusieMTN

Hello!  I am also Triple positive.  Had Chemo up front 12 weeks of Taxol and Herceptin followed by another 12 weeks of FEC, then surgery (MRM) and 34 Rads.  It was a long run but doable with the support from the nurses, doctors, friends and family! 

Hang tough you WILL get thru this!

redninrah

Hi there-

Im triple positive, cluecless with everything in terms of even if im having chemo and what Im having. 

 Ishould be visiting myoncologist soon. Any one can give me some ideas of what to expect?

 Ive already had a masectomy with no reconstruction until at least a yr.

 Whats in store for me my friends?

Omaz

Hi rednenrah, With HER2+ there appears to be a higher risk of recurrence and they usually offer women with this type of cancer herceptin (trastuzumab).  This is a targeted therapy I think that greatly reduces the risk of recurrence.  Often it is given with chemotherapy.  Mine is 6 cycles of taxotere/carboplatin plus herceptin every 3 weeks.  I start next Tuesday.  The herceptin is then continued after the chemotherapy until you have completed a year. Hope that helps, I am still pretty new to all this and pretty nervous as well!!!

Ondagrow

You and I have the exact same regimen Omaz...I will check in on you Tuesday night...

TriciaK

Hi Ladies, 

 I'm highly triple positive and five years out this summer, you can see my details below but the biggest thing for me with chemo was fatigue, rest when your body tells you to do so as it helps you heal.   

Herceptin has changed the whole prognosis for us, it's thankfully given us a very good chance of no recurrance so this is a MUST!!!!

I'm still taking arimidex for another year but if my onc agree's will stay on it longer as the studies suggest it's very beneficial for us.  I also had an ooph in '06 as a preventative treatment and have no regrets.  My best wishes to you all in getting through this, its well worth it:)

Tricia x

Ondagrow

Thanks Tricia,

You give me hope...

TriciaK

Hang in there sohardbnme, it WILL get easier:)

Tricia x

vhqh

I am almost 3 years out from being diagnosed, triple positive and stage IV from the get go with a bone met.  I did TCF for 5 rounds, shortened by 1 round due to good results and being stage IV.  Onc did not want to stress my body anymore than neccessary due to the fact that sooner or later I would need more chemo.  They did not get clean margins with my lumpectomy but did not want to wait to start chemo so I had a mastectomy after chemo.  A year later I was diagnosed with "numerous" brain mets, all very small.  I did whole brain radiation, the mets are still there but I have yet to have any symptoms from them.  I continue to receive Herceptin due to my stage IV status and will continue to get it as long as it is working.  I also take Tykerb and Femara.

It's not fun but it is doable.  Eating can be difficult due to the changes is taste, fatigue was the biggest problem starting with the 4th round.  I took my chemo on Thursdays, after the 5th round I tried to go to work the following Wednesday but barely made it through getting a shower.  I did work through chemo but my employer was very willing to work with me, changing my hours to 4 10 hour days and not fussing when I couldn't make it in.  My coworkers gladly picked up my caseload as needed. 

LouLou40

Hi I'm triple pos as well.

I was dx last Feb and finished all my IV treatment earlier this year. I did AC x 4 followed by Taxol x12 with 3 weekly Herceptin. I went into menopause from the Chemo (39 yr old) so am taking Arimidex and having my blood hormone levels checked every 3 months to check I'm still in menopause.

Life is back to normal for me now, I only have a few minor aches and pains but nothing to complain about, Chemo is not easy but doable.

From what my Onc tells me triple pos has a very good prognosis with Herceptin and AI's, he says I should live to be a very old lady.

Hope your treatment goes well with minimal SE's.

 LL

BlessedOne2

Sohardbnme, I just want to encourage you and the others just starting out, remember to breath and take things one day at a time. I was diagnosed was Stage II, Grade 3, triple positive, no node involvement.  I took A/C x4, taxol for 12 weeks, herceptin 11 weeks. I had to stop Herceptin because it lowered my ejection fraction, however, it is on the way back up.   I completed chemo in January and radiation in March.  Started on Tamoxifen, then switched to Arimidex this month.  Everyone's experience is unique even though the symptoms are very common among us. Hugs, Wanda   

Omaz

Hi BlessedOne2, my diagnosis is very similar to yours though I am getting TCH x6 (just did first one).  Could you tell anything physically from the herceptin lowering your ejection fraction?  I mean, did you notice anything or was it picked up on the echo/muga?  thanks

Ondagrow

Good Question Omaz....

BlessedOne2

Omaz,  I was having shortness of breath episodes and chronic and really deep dry coughs, but we really didn't know why.  So my onco referred me to a pulmonary specialist for a complete lung function test to rule out any lung problems or mets there.  I was told that I had developed adult onset asyhma (sp?).   Because I was already seeing the cardiologist due to HBP, he did an ECHO and that's how the lowered EF was discovered the first time due to the chemo and the second time due to the Herceptin.  I hope all of that makes sense, a little drowsy.        

Omaz

Thanks!  I will pay attention!

bbryant04

I start chemo in a week and a half...18 weekly, then a year of once every three weeks...Taxotere/carboplatin/herceptin...then radiation and hormone therapy.What kind of side effects should I expect, specifically from the chemo?  My husband and I own a small business that I presently operate - we're trying to make some sound business decisions, whether to close it or rearrange the schedule.  My treatment is due to start on a Monday - should I maybe try to have a different day? Any suggestions? 

kira1234

bbryant04,

I am also doing TC but no herceptin. For me day's 5-7 post chemo were the hardest. I am on day 13, and feel quite well. I would suggest you come on over to the Sept. chemo thread. We are very active, and will give lots of support.

Karen

lago

Just met with the oncologist yesterday. Still need to wait to start since I'm only 2 weeks from my bmx and need to heal. PS has to give the OK.

Treament
6 rounds of Taxotere/carboplatin/herceptin every 3 weeks. Herceptin continued to finish a year and Anastrozole (Arimidex) for 5 years.

Rational
My oncolgist feels that at my age (will be 50 in February) chemo will put me into menopause permanently. Actually I think I started full blown menopause 2 months ago. I have mood swings, early periods… actually now I think I'm going to miss one and 2 nights ago woke up totally drenched (night sweat?) Now all I worry about is osteoporosis. Family history and I am thin/small boned white gal. Practically the poster girl for it.

Omaz

Lago - we have the same treatment scheduled and are the same age, I am 51 and also have not gone through menopause completely yet.  I just did my second TCH yesterday.  It is good that they want you to heal up first.  I had a DEXA prior to chemotherapy to check my bone density.  It was easy if you haven't had one.  Just lay on a table and they check your hip density.

lago

Yes they will do a bone density test. Sadly I know I will have to give up my daily diet Dr. Pepper as I hear it isn't good for the bones. Have a MUGA on Monday. Not sure when they will do the bone density. Still need to do the port but I think I need to heal up a bit more before I set that up.

Omaz where are you from?

Omaz

Lago - I live in Arizona  - how about you?