Perjeta/Herceptin/Taxotere

fujiimama

Mine has bleed a little more too. No bruises, this one is set deeper.

bhd1

i made roasted chickpeas today.  dh says they are good.  i really cant taste too much because of pht tx.  but i like the crunch.    thx ebru

bhd1

I had my 4th tx of pth today. Based on clinical exam and bloodwork the docs are pleased. I hope they are right. So I am staying on for a s long as we see no change. We r just hoping for stable. Hugs to all

fujiimama

Barb I hope #4 gets regression for you. Good luck.

RonnieKay

Jill & Fujiimama...so good to hear about NED & great scans!!!   Even though I'm not on the taxol part of P/H, having navelbine, I'm still watching what's going on with you!   Questions...Jill, did you have a PET scan that showed liver tumors shrinking?  My onc doesn't do PET scans, just CT, but people talk about hot spots, etc., which I have a feeling show up in PET scans.  She said if she sees something in CT to warrant PET, then she'll do it.  I really want to know if mine are shrinking!!!   Anyhoo, all my blood tests/tumor markers are normal so she's considering taking me off navelbine in July and will just stay on P/H, which scares me just a little because w/navelbine constipating & perjeta causing D, I've really been fine.  What I am feeling, after 4 months, is just a little queasiness...not too bad, but definitely makes me wonder if I ate something too spicy, ate too much, maybe the mocha (my treat to myself) etc...is it just the perjeta starting to rear it's head???   I can take a compazine but I'm always trying to figure out how to avoid this feeling....maybe I can't.  I just hope the P/H does the magic!!!

JillThut

I had a CAT scan, Ronnie. I don't have PETS either. .... CATs every three months. And the last two showed shrinking liver tumors...on carbo/tax and now perjeta/tax.

aic

Great to hear Barb!

fujiimama

RonnieKay I do bonescans with ct . I had a mri due to some degenerative bones

My mets are bone. Ive never been one for liver met.

RonnieKay

Woohoo Jill & Fujii...I won't be such a pest about PETs.  Looking forward to seeing NOTHING in July!  Jill...how long have you been just on herc/perj?  I hope for it to work decades!   Have others lost hair on perjeta?

JillThut

Just since last treatment..almost three weeks ago. My onc's intention was to have me do six rounds of perjeta/tax/herceptin but I just couldn't tolerate the side effects so we stopped the tax after three treatments. (but per her APRN she intends to add the tax back in eventually. She did not tell me this herself but I will see her on Monday and ask. The APRN and the onc alternate appts). First two treatments I had severe sore throat and fever. Second treatment landed me in the hospital on intravenous antibiotics for a week. But the third treatment was the worst by far..no fever or sore throat but severe nausea that lasted a good two weeks.



Without the tax I still took the steroids for a week because I was so afraid of the nausea. I am pleased to report that I fared extremely well with just perjeta /herceptin. Back to my old self..energy wise and everything. Plan to do it without steroids this time as it probably was overkill.



By telling me I will be doing tax again in the future sounds almost like the APRN was warning me off thinking I'll get hair back anytime soon. She's forgetting the choice is mine. My onc does not talk to me the way she does. She treats me more as an equal. I just take it with a grain of salt and save any important conversations for the oncologist.

bhd1

i have a question about fluid build up in eyes and ears from taxotere.  i take only 2 steroid pills for three days instead of four.  do you think if i took 4 steroid pills each day it would prevent this fluid build up?   thanks.

Jacquee

Ok ... I think it's time to put my big girl panties on and stop lurking and join in the support.... if you don't mind of course :-)



I have one of the best I mean THE BEST support systems I could ever ask for. However, they can empathize so much and I read all of your posts each and every day and I realize I want to be a part of this amazing family of stage 4ers... I realized I'm not alone in any of this. Thank you I will get off my soap box and say...



I have done 6 rounds of the perjeta taxotere and Herceptin every 3 weeks and every other tx I get the xgeva shot. I did have a bone scan after the 4th treatment but unsure what it offers. Physically and clinically I show to have progressed; however, symptomatically I feel 90% better. I will never walk again but I've taken steps I have a pain pump to minimize my pain so if you knew me in December and January (I lost those 2 months) prior to this regimin I could not sit up I could not get into a car. I did receive 10 rads but I believe it's the combo that has allowed me to progress not only physically but spiritually as well if that makes sense.



SE for me I lost my hair I suffer from soar throat sensitive mouth and tongue. Is that normal?? My mouth in general feels odd dry maybe but it's very uncomfortable. I am nauseous 24/7 so I live on daily zofran and composine and I suffer from really weird dreams. But I could say that is the nighttime cocktail of muscle relaxed and xanax for anxiety unsure yet LoL.



I also believe my lung mets have disappeared from this combo as well... is that even possible hmmm. Not so sure but my onc is only concerned with the liver mets and the new mets in the lymphatic system. All others remain stable. I take stable as good I get more snuggle time with my daughter and more laughing with my husband friends and family. So we shall see I have 2 more tx before my next bone scan and I hope we can really say what this combination is really doing with me.



I'm a babbler sorry people call my language Jacqueneeze LoL sorry upfront!!

I just never felt in the past that I would do well in a support group or with a therapist, to me this type of support is what I like so thank you all each and every one of you wonderful women and even more amazing how broken hearted I am to read about our most recent angels I mean wow that's powerful to me and feel honored to share my journey along with all of yours smoochies XO Jacquee

Redmond

how many cycles of herceptain/taxol/ and prejeta is the norm.  Initially I was to have 6...now they think maybe 8...maybe more?

RonnieKay

Jill...Maybe you won't need the other tax treatments!  Good you can get the real scoop from your onc soon.  I understand what you're saying about the APRN...we know our bodies, we can read between the lines! 

Bhd1..When I did taxotere/cytoxan/herceptin in 2009 (1st dx, stage 2), I only had 4 infusions over 12 weeks.  I took one steroid the day before, day of & day after treatment.  You must all be getting a much higher dose, needing more of the steroids.  I had a drippy nose (which I have now on Navelbine) but didn't have problems w/eyes or ears.  Wish I could help.  

Jacquee..Welcome Sister!  I think many, maybe most of us have great support systems...but it's different when you can share with people who're in the trenches with you.  So glad you are here with us!  And YES..anything is possible!  We'll be here to cheer for you when scan time comes along in 2 weeks!  Do you use Biotine for your mouth?  It's great stuff...toothpaste, mouthwash, gum.  It's specifically for dry mouth & my onc & hygienist recommended it my first dx on chemo.  It's wonderful, it really helps with the funky feel of chemo mouth.  It's kind of spendy for the toothpaste but sooooooo worth it!   Remember...this is a free babble zone...you're in good company.  My nickname is Motor Mouth & if I can't talk to you...I'll type it!   XOXO  

bhd1

welcome jacquee.  i hope you find lots of  comfort and help on this board.  good luck with the scans.  let us know how it goes.  we care.  barb

Lorijo6600

Redmond, I asked the same question to my onc and he told me it is up to the doctor. Some do 6 treatments of thp and then drop the tax; some do the full cocktail until best response before dropping the tax. Mine is doing the full cocktail until best response. I will have my 6th round Monday.

SPAMgirl

My onc said I would be on it until I hit progression.  That came after 6 months for me.

lilylady

I haven't posted in a while so thought i would update. I have been on PHT since late last June. This is the longest I have lasted on any chemo. I did 6 PHT then we skipped the Tax for 2 tx and i got progression. We added the Tax back in and next scan reversed the growth. I don't even know how many I have had now. The last tx kicked my butt with the bloodwork. I ended up getting 4 Neupagen before the counts came up. it was the worst they have ever been. I am skipping my May tx so I can feel good on vac.I go again the Tuesday after Memorial Day. I will be doing only a 75% Tax dose for that tx. Starting to dread them-I used to get by with very few SEs but seems the longer I am on this the more they affect me. Still better than most I read here. Mostly the Big D and so very tired. And the taste bud thing.

I was getting worried because so many people dropped after a short run with progression. And this was one of the new miracle drugs for us Her2s. And it was supposed to be mostly tolerable but it sure doesn't sound that way for a lot of you.

 Welcome Jacquee-good luck with your upcoming scan.

Jacquee

Thank you ladies I already feel at home and as if I've been chatting with all of you for a long time! Cool part is I plan to have a long time :-D



My ONC will keep me on this full cocktail p/t/h and every other Xgeva shot as long as it works. So far I have had 6 tx and will do 2 more with xgeva next tx that will make a total of 8 tx we will do a bone scan. My ONC said as long as I show stability or regression he will continue same regimen. If progression appears then we will discuss other alternatives.



I will definitely keep y'all posted on my results and tx plan. It does appear to be quite interesting on the different SE people go through and what people it works for and doesn't. This whole platform is still all very surreal to me so I apologize again if I appear all over the place. Ugh just thank you all again!!

fujiimama

Lilylady so glad to hear from you. I think of you often. Sorry the tx is so hard. I swear I live on pedalite. The big D is the worst. I found myself in the chair getting fluid for the first time last treatment. I've been doing this fir two years and had never needed any assistance between txs. I told my onc that the perjeta purge is a crappy side effect. He laughed at the joke and then got very thoughtful. He's an awesome onc so now I am curious about what he'll come up with. I'm glad you're taking a break. I'll pray for you to have energy and zero progression.



Jacquee so glad you have found a home here. I talk too much too. So you're in good company. I had a bone met and a suspicious spot on my lung. Now I have been NED for 7 months and my onc says that I have a good chance of staying that way for a while. I wish this was everybody's magic bullet. But I hope if it's a step in the right direction that more effective drugs will be found. Ok I'm being a chatty kathy so I have to s t op now.

bhd1

ladies, how much decadron do you take before taxotere perjeta and hercepton? 

Jacquee

H Barb, not sure I do know it's a small fusion bag. Visually it's about 1/2 the size of the actual medicine bags LoL. I go in 2 weeks I can find out then for u?

bhd1

Sorry I meant how many pills. I am supposed to take 2 tablets twice a day the day before, day of, and day after chemo .

Jacquee

fujiimama that is wonderful!! I'm so happy for you awe so glad to hear NED I so will do a happy dance in my chair as I do for you and all other ned folks. I have to say the more I read I get more and more excited that possibly my prognosis was off or at least given prior to my tx without the thought of tx working because I too feel I have a chance to be NED I know I will never walk again to much damage but I will see my daughter off to kindergarten and to other milestones thank you so much for that. Knock on wood I continue tx without SE that will make me stop. I'm so sorry to hear those of you that get the harsh SE and need to take a break or come off of the pht. I will do heavy heavy praying for all you sweet ladies! Again I thank all of you gosh I could go on forever XOXO Jacquee

Jacquee

Hi Barb - I get mine via iv. The only pills I take prior to chemo is zofran (on my own) and Tylenol which is given by nurses before I start their pre-meds which is zofran (in addition to the pill I take with my morning meds) and decadron via desperate iv infusion bags. I have never taken the decadron in pill form I'm sorry I can't help you I did not realize it came in pill form. XOXO Jacquee

JillThut

Barb..I was taking exactly what you take..two tablets morning and night and they're 4 mil tables so 8 mil morning and night day before day of and day after.

fujiimama

I was taking dexamethasone 2 times daily for three to four days after pht. I never took anything before, they always hung a bag with my other stuff.

Tr4c3y

JillThut, I was on PHT for my first treatment a few weeks ago, and it was going to be an every-three-weeks thing.  But my hands blew up (onc thinks it was hand-foot syndrome), so she got nervous about the taxotere and convinced me to go to weekly Taxol treatments, with the antibodies in the mix every three weeks.  So far, after three Taxol treatments, I've had a much easier time (except for the infusion reaction last week).  That might be something to explore.

JillThut

If I have to go back on taxotere at some point, maybe

I'll ask her if I might fare better on an every week schedule,

Rehula

Hi all,



Sorry been away for so long since my first post way back last year. I was having a hard time dealing with mets and having to be back on chemo. I'm currently only on p/h. Stopped the taxotere after six treatments - I couldn't stand the side effects of t he chemo any more. Food tasted like ashes and the skin around my fingers was turning black; I felt like I was on fire!! Continuos nose and eye dripping with the added fun of crusting. I could barely get out of bed and of course swinging between constant diarrhea and constipation...

HOWEVER, my first PET scan after 4 treatments of p/h/t showed shrinking of liver lesions and no evidence of bone lesions. My second PET scan taken when I had been on just perjata and herceptin showed further shrinkage and one lesion just plain disappeared. My onc hugged me, he was so excited with the results. I'm coming up on about six months on just p/h and so far the combo is working as advertised.