Perjeta/Herceptin/Taxotere

aic

we will miss you barb....good luck with the new treatment!

Trish03

Great news from scans yesterday! They show almost a 30% reduction in the tumors in my liver and "near complete resolution" in the omentum and peritoneum. These scans follow my 6th cycle of PHT. After my 3rd treatment, they had shrunk almost 40%.

At my last treatment, my onc said that if the scans show regression or stable, I can go off the Taxotere. I'm really excited about that but also a little nervous. I know that some ladies have had progression in a couple of months after going off Taxotere, but I feel that I need to give it a try. I think my body needs a break from the Taxotere, and, who knows, maybe I'll be one of the lucky ones who can get good results on just the PH. I'll be happy to get rid of the se's of T for a while, anyway.

For today, I'm thankful for a good report. All the best to everyone.

Trish

bhd1

congrats Trish. I am happy for you

pearlady

Fujiimama I'm so glad that the Symillan works and so glad that you remain NED. I am not familiar with Symillan but I know when I was on Perjeta I was having serious issues digesting. I wasn't able to take the Metformin while on Perjeta since the big D was out of control from the Perjeta and I was taking Potassium pills twice a day. My blood sugar was always normal but while taking Afinitor it was in the higher normal range. The Glucophage, which didn't cause the big D that Metformin did, has brought my blood sugar down considerably, even while still taking low dose Afinitor along with the Abraxane. My onc really believes all women with BC should be taking Metformin or Glucophage, but it's amazing that so many oncs don't prescribe it. It sounds as if the Symillan works the same way, but is injected. Wishing you continued NED and good luck with your reconstruction.

Monica

bhd1

pear lady thx for your post

BethCon1

Trish , that's fantastic! I start on Fri, I have high hopes for these drugs!

Trish03

Onc did take me off Taxotere today...YIPPEE! I'm eager to see if it helps the side effects, mainly the Big D. I know that's also a side effect of Perjeta but hope it's better without the Taxotere.

DH and I want to do a little traveling...nothing major...just some one or two week trips in our car or motorhome. I think a change of scenery will be wonderful! Onc said that if my counts don't go as low, I'll be able to stop the weekly blood work after this cycle. That will make traveling a little easier, although I think he'd let me slip it for something special.

I'm praying that I'll continue to see regression of tumors in liver while on P/H. I know that results for that are all over the map; there's just no way to know how I'll do.

Beth, I hope you have excellent results on these drugs. All the best to all the ladies on PHT.

Hugs, Trish

SRK64

I am new to this site, although I have been undergoing p/h/t treatments for nearly a year now. Has anyone else had severe swelling and edema in their legs from the taxotere? There are days I am so swollen I can hardly walk. I have been taking diuretics and potassium, but it really doesn't seem to help. Any answers or advice would be welcome!

BethCon1

Well, I had my first dose on Fri and I've been sick ever since. My guts hurt, my bones hurt, I can't sleep, I'm tired and weak. I can't do anything, I couldn't even get my kids out the door for school this morning, I had to have my mom come over and help. Does it usually hit this hard at first? I don't know why I thought I would breeze through this.

Dita183426

Hi bethcon. Sorry you are having a rough time. Ive had seven treatment s now and have felt ok up to this last one where like u I can barely get out of bed. I have been taking steroids for three days afterward chemo but didnt take them this time as I hated how they made me feel. I now know how much they helped with energy levels and bone pain. Have u been prescribed them? If not they might be worth a shot

Trish03

Beth, I'm so sorry you're feeling bad after your first treatment. I didn't really have any problems when I started. The fatigue and aches, which started around day 4 after treatment, did seem to get worse each tIme. It started lasting 2-3 days, but following #6, it lasted a week. Maybe the drugs built up in my system. You might want to contact your onc just to be safe. I've read about people having to get blood transfusions, fluids, etc. after treatment.

Last Monday, at #7, my onc dropped the Taxotere, and the difference is remarkable. I've had very little fatigue...maybe 10% what is was. Plus, when I had blood work today, one week after treatment, my white count was normal. It has been going very low. Maybe this can be something you can look forward to in the future. I know many people do go off Taxotere after #6 when they've had a good response.

I hope you feel better soon.

Hugs, Trish

BethCon1

I'm finally starting to feel a little better today. They did give me steroids to take the day before, during and after chemo but I was still in a lot of pain. I had to go back on my fentanyl patches and start taking percocets again. I'm still weak and my stomach is a mess.

karebear76

I am on this mix and have had 3 treatments. It is wreaking havoc on my IBS (intestines). I go from constipated to diarrea and nothing in between. I hate it. I am also nauseous the entire 3 wks between treatments.

Trish03

Kerri, I'm sorry that you're having so much trouble. I've had a problem with diarrhea, too, but I can't imagine what it would be like with IBS. That has to be a nightmare. I'm off Taxotere now and still have it, so the Perjeta must be the cause. Luckily, I haven't had any nausea. Do you take any anti-nausea meds?

I hope you feel better soon. All the best to you.

Hugs, Trish

BethCon1

Karebear,I'm having the same issue with nausea. It's exhausting trying not to vomit everyday. So far I'm winning, but I end up dry heaving all the time. I've been eating rolaids like candy and that helps for a little while, but every day is different. The diarrhea is constant and painful and I'm having a hard time keeping my fluids up. This is after only one treatment, I'm scared to see how my body reacts the next time.

Suniday

Hi Ladies! Had my last (6 of 6) PHT on Friday, Nov. 15th. Big sigh of relief, lol, so glad for it to be over. I will continue with the P/H every 3 weeks for some time but not sure how long just yet. PET scan next week, and will see onc the following week to discuss the next phase. My PET scan half way through showed very promising results, so praying that the PHT has done it's job. Last week, my fingernails on my ring fingers of both hands suddenly turned black and both nails are barely hanging on. It looks aweful and hurts too, but keeping them bandaged so nails don't rip off and bleed. Looking forward to the SE's diminishing. Thinking about all of you with the Holidays coming up and wishing you all the best. If I can be of any help to any of you please don't hesitate to let me know, I am pretty sure that I had every SE possible:) Also looking forward to some hair and eyelash regrowth:) Hugs!!

RonnieKay

I'm always interested to hear about the pht side effects. I'm on navelbine w/her/perj. I was on taxotere, cytoxan & hercept first diagnosis (stage 2) and once the chemos were done, I had no side effects from herceptin. Now that I'm on my stage 4 cocktail, I have no D, probably since navelbine can cause constipation (I've had a little) and they balance each other. I think perjeta is causing a few blips...thinning hair/eyelashes, some mouth sores. Anyone else have those two things with just the ph, or is it too early to tell, since taxotere causes hair loss? Just wondering. I'm so happy to hear many are dancing with NED. I was thrilled when my liver tumors shrunk 80% after 5 months, and with 2nd scan 3 months later, they went from measuring in cm to mm...but I want a dance with NED too. Trying to stay positive & reading here makes that happen! Love to you all...and barb..thinking about you on your new treatment!

BethCon1

I honestly don't think this treatment is working for me. I can feel my T9 is becoming more painful and my tumor markers keep going up. I was at 610 then the last test was up to 986. I go in for my 4th round on Fri.

fujiimama

Sorry Bethcon1. Have they biopsied the Mets? My tumor changes. My original was barely +++. My met was e-/p+(9%) and her jumped from 2% to 30%. I hope they find something that will work for you. 

BethCon1

Yes, they biopsied the spine and that came back er+ and slightly pr+ and then they biopsied the liver and that came back highly er+ and then only half the cells stained positive for HER2, so they are still treating me as triple +.

Amanda796

I have read quite of few of the posts on this thread and would feel guilty if I didn't contribute.  My wife was diagnosed with breast cancer with extensive bone and liver mets in October 2013.  She is 33 years old with a 4 month old and a 4.5 year old, both girls. 

Anyway, the purpose of this post is to share our experience with this cocktail.  We have had 4 treatments so far. We had a CT scan following the 3rd treatment.  The primary tumor in the breast, which was a monster, is "no longer identifiable".  The liver mets have significantly reduced (more than 50%).  The enzyme levels that were once high prior to treatment are now in the normal range, those positive results actually happened after the 1st treatment.  The CA27.29 markers have fallen from 194 prior to treatment to 43 after the 3rd infusion.  The scan report was a little fuzzy on how well it is working on the bones.  There really wasn't a comparison on size of the bone lesions compared to the 1st round of tests, but it did say that one of the lesions on the sacrum did not show. We'll ask our oncologist more about how the bones are doing at our next appt. on January 8.  She summarized it to us calling this a "beautiful response".   The initial plan is to have 6 of these treatments, but the doc did say that we would go for the maximum response before taking the taxotere away, which we are completely on board.  My wife is doing really well from a  side effects standpoint as well.  There are certain days she is a little sluggish, usually days 4-8 after treatment.  But after that, she's pretty much normal. 

I apologize if husbands are supposed to post in different forums, but I wanted it to be known that this combo has done its job thus far (not that we really have much to compare to since this is our first rodeo).  My wife isn't on the computer as much as I am, so I relay information that I find to her.  I refer to all of you as my "forum friends"....I hope you don't mind. 

I wish all of you a Happy New Year and thanks for sharing your stories. 

 

 

MinusTwo

Amanda's husband - thanks for sharing.  We like all the reports we can get.  What a wonderful response.  Hope her SEs continue to be minimal.

JillThut

Thanks for your post, Amanda's husband.  Very glad to hear she's having a great response.  I have a young friend with young children who is at the beginning of this regimen.  I hope she gets an equally good response.   Sounds encouraging!

Trish03

Amanda's husband, that's wonderful news! I hope that she continues to show such great results.

An update on my treatments...after 6 cycles of P/H/T, my tumors in my liver had shrunk almost 80%. Last week, after 3 cycles of just P/H, the tumors are stable, so my onc is leaving me on those two drugs for now. My hair is growing in quickly; food tastes normal; and I don't have the really bad fatigue. I still have to deal with the D, but that's the only se I have. We're going to scan next time after 2 cycles just to make sure it's still stable. I hope to continue on this treatment for a long time. 

I wish a Happy New Year to everyone! I hope 2014 brings us a cure!

JillThut

Sounds great, Trish!  I hope you get to continue it for a long time too !

fujiimama

Yay!Trish and Amanda + DH love to hear good news.

 Perjeta+herceptin seems to have no in between. I have been on ph only since October 2012. I am in a healthy state of NED. However, several of  the girls who started with me, are now on other treatments.

 Bethcon 1- I hope they can figure out your magical mix soon. It's hard when your "type" is goofy.

We've made it to the end of another year!

 Cheers to another year, 

May NED and the stable boy dance at your table. Keep the smiles coming ladies.

Shaunna

Amanda796

Trish03, if you don't mind me asking, was there a reason that you stopped the taxotere after the 6th treatment?  Were there signs that the taxotere had done all that it could do or was there still  evidence that there was shrinkage?   I was under the impression from our doc that we would continue to get the taxotere until we acheived the maximum response (which I'm not sure exactly how that can be measured unless the scanning frequency is increased).   As everyone else, we are hoping to get to NED before changing anything up so if it takes a few more treatments of the dreaded taxotere, that's what we would prefer to do assuming the side effects stay minimal. 

Has anyone dropped the taxotere for a period, then added it back in with herceptin/perjeta?  I'm assuming that's not the norm.  I recall our oncologist saying that if we can get to NED and keep it going for over a year, that if we saw progression, taxotere could be added back in. 

Trish03

Amanda, I think that many oncs stop the Taxotere after 6 cycles, although some continue it. I don't know how they make the decision. When I first started my treatments in June, I read through this entire thread, and it seems as though most stopped after 6. Some had progression fairly quickly, and some were stable for a long time. There's just no way to tell how anyone will react. My tumors have shrunk enough that I don't have pain anymore and haven't needed pain meds for months. My tumors were huge at first - about 20 cm - so 80% shrinkage is really good.

I was very happy to get off the Taxotere. It was still working, but it's really hard on your body. My white count got very low every cycle, and it seemed that the fatigue lasted longer each time. Now, I don't have to go every week for bloodwork, which is nice, because I don't have to plan my schedule around being in town every Monday. Of course, it was great seeing the tumors shrink drastically each scan, but if I can remain stable, that's OK with me. My onc said that I could go back on Taxotere at some point in the future if needed; however, he has said that my next drug will probably be Kadcyla (TDM1) if the PH stops working.

I wish you the best. I hope you get to NED and remain there for a long time. 

Hugs, Trish

BethCon1

My onc will only give 6 rounds of taxotere. He said it's so hard on the body and so toxic that after 6 it starts to do more harm than good, but I do know of some ladies who continue on it well past the 6 rounds....maybe they just tolerate it better.

Dita183426

my onc stopped tax after 8 and my second opinion concurred.  The reason they gave is perjeta and herceptin are effective on their own and so it gives your body a break.  If your wife is tolerating it well they may continue for that reason. 

I was told that they could try tax in the future but probably after a couple years.

Amandashusband it might be a question for your onc when you see them next as all have their own protocol depending on past experience and the results they have seen. Your wife is young and strong with a young family so they might want to be as aggressive as possible up front. Its an art as much as a science these days with so many treatments on offer. Good luck to you both.

bethcon please let us know when you get your next results. I cant speak for TMs as they dont work for me but I had no pain from my bone mets until I started treatment and then I could pinpoint each one because it hurt. I was convinced i had progression but scans showed healing of the bone which can cause pain and so I hope this is true for you too.