Perjeta/Herceptin/Taxotere

kwagart

Hope, thank you so much. . . I am grateful for Woodylb, you and all of the amazing women on bco.

woodylb, I will be praying your counts are good!

I am starting hpt next week (pending muga), having a plan has been such a relief! Sure do have a love/hate with Neulasta tho (or as I like to call it new-blast-ya). I so think antihistamines really helped me with the aches.

Woodylb

Kwagart,

I cannot get neulesta because neulesta is given and you wait three weeks t get your chemo. I am ona weekly regimen. So i am stuck with neupogen, i am also taking aeirus as antihistaminic, true it s helping a little. Why are they making you wait for muga? Both oncs told me a heart ultrasound is good enough. I hope you start soon. How would you be getting your doses? I really hope for hope's cancer to turn with all my heart. Let me know if you need anything. I will post my blood status tomorrow.

kwagart

I am having taxotere, Herceptin and perjeta infusions every three weeks.  I am not sure about the muga vs. ultra sound but it I think it is required every three months.  The muga is scheduled tomorrow, so it is not really holding things up, I will ask about the ultrasound because I don't like being injected with the radioactive material (I'm worried it will cause cancer....sorry, sometimes I have an inappropriate sense of humor). I will be watching for your blood status and hoping that Hope gets confirmation that her status has changed and can have this treatment!

RonnieKay

Woody..,not what we wanted to hear...prayers that your marrow will become stronger & allow for treatment. Are they considering changing the carbo...or just thinking more days between are needed? I know neupigen is fast acting...would it be a better boost to do neulasta & get you back on track? Ugh...in my mind, there's an answer to all this...then, reality hits! It's such an odd turn of events...when we have to build our white count up...just to knock it back down. I hate this disease.

Kwagart...so glad Woody's here to give you her incredible knowledge of your shared dx, and also pray that Romansma will have a her2 change!! I see that quite a few of us had stage 4 hit 3 years after our first dx. Good luck w/your new txt. Becoming a neulasta partner, I found Claritin to work wonders. Since I take it daily, I rarely felt much bone pain & if I did, it would be a tight squeeze in my ribs...short & just enough to let me know it was working.

Don't know if I said before that my new onc is a researcher & said they've isolated 48 new bc genes! He reiterated what the genetic counselor told me at first dx, have my blood banked. I must do it...he said it's very valuable info! So...in my list!

Woodylb

Hi Ronnie, missed you ) i am not having carbo now i did however since last january, but it was very tough on my blood in the last session. Before i start my hercept/perjeta/taxol , i was two months om xeloda. So when they gave me first injection on this new combo my blood was all on average, plus i have this cold , it is not helping. I cannot take neulesta because i am having a weekly taxol , it needs an interval of three weeks. I hope tomorrow my blood will be good enough to go through the second dose of taxol ig not it is gone till sundat. Here the weekend starts friday/ saturday . I just do not want the sessions to be spaced so much . Hope you enjoyed your burger hehehe , i lost my taste from the first session yukkkk . Hugs .

cheery

Hi Woody

So sorry about your tired bone marrow. Hope your blood tests cleared and you were able to get your chemo.

You probably already know this but just thought I'd share this, in case anyone else is interested. Drugs like Herceptin/Perjeta and Taxol/Taxotere actually continue to work in your body for a while after the infusion. Iirc, Herceptin actually has a "half life" of 30 days. So please do not be too worried if the chemo is delayed by 1 week or so. Ideally, you'd want to get it as scheduled but this is a marathon. If your body is tired, it's good to let it rest for a while, not too long of course!:)

Take care ladies.

RonnieKay

Oh good gracious, Woody....I knew you'd changed to xeloda & now the Cleo drugs...must've been chemo brain moment...ugh!!!!

Cheery...always good to get info...support is what helps all of us thru this

Woodylb

Hehehehe RonnieKay , my chemo brain has been present for quite sometime now , i don't even notice it anymore.:p but i thank God i have an extremely human MO who really cares a lot about my quality of life and listens to my body. I will most likely be having the dose on sunday. But now i will have to have 5 shots of neupogen every weeks after taxol.

Cheery , you always pop up at the right time to encourage thanks for the info , i actually do not worry much about delays as to me if you do too much it may hurt you more than the cancer lolll. So i take it easy when my body screams.

RonnieKay

Hope you get to do your shots at home, Woody....or is it an easy trip to onc's office? Rainy & cold here...where's the sand & sun when I need it!!! FYI...I had lunch with Grammy R yesterday!!!! She's so lovely & we talked for a long time! So thankful for getting to meet her...in person! Hugs to all!

Woodylb

RonnieKay, my hubby gives me the shots at home lolll after i yell at him every morning for waking with a seringe in his hand hehehehe. The onc is 25 min away from my home. We have a nice weather at this s time. It is sunny, breezy but we had thunder showers today. Who is Granny R ??? I've been away from the states for 20 years. But i am glad you enjoyed your time. Kisses

RonnieKay

I'm giggling over the thought of your DH hovering over you with the syringe....it's just classic!!! Seriously, doesn't it feel good to laugh!!! He sounds like such a dear man...and you deserve a good guy .

I was thinking you knew Grammy R...but I think she's just on the Catholics thread. She & I live about 4 miles apart so we got together for lunch and it was wonderful! Sue Opp told me she has met sisters at various events & when she traveled to Turkey, met Ebru! To hear that was mind boggling...fantastic! So...maybe some day we will break bread together...or dip shrimp . In the meantime...get those white cells budging!!! Heading to bed...hugs to you...have a blessed day!!!

Shutterbug73

I was wondering...has anyone else had a severe acne-like rash from this regimen? It is mostly on my back and arms, but also on my neck, face and scalp. I just had my 4th round last week. The rash was the worst with the 1st round and they gave me minocycline to help clear it up. I'm not sure if the antibiotic worked or if it just ran its course. I got no rash with the 2nd infusion and only a slight rash with the 3rd. At that point we thought it must be from the Xgeva (which I get every other round), but the rash came back with a vengeance with the 4th round (with no Xgeva). Just in time for Thanksgiving...yay!

All of the drugs list rash as a possible side effect, but no one that I've talked to in my Oncologist's office has ever seen anything like it. The nurse had to google it on her phone. I hope it is the Taxotere which I will be dropping after two more rounds, but apparently it could be the Perjeta or Herceptin as well. I know it is a small price to pay to be alive, but can't a girl with no hair get some clear skin?

Would love to know if anyone else has had this reaction and if you found something that helped.

Woodylb

RonnieKay, heheheheh he does hover over my head not knowing how to tackle this so he does not make me uncomrtable. He is a sweet sweet man through all these years he has been with me to every cycle every appointment every side effect. He is a wonderful men and i am soooo blessed to have him. He is my rock.

When you said Granny R is some lady in the catholic thread i laughed because i thought she is e owner if sime seafood restaurant hehehehe as the naje suggest that God i feel so stupid! I would love to meet someday god's willing and i will be inviting for the seafood feast .

Meanwhile, i finally got my taxol today my platelets rose enough for ke to get it. Next week i will have herceptin/ perjeta, the next day i will head to Lebabon to be with my son till after new year, i willhave the second cycle there God's willing. Oh ! And i we do have the internet so i will be in touch the whole time.

Have a good night sleep sweet RonnieKay. God bless you . Kisses.

Woodylb

Shutterbug,

The only people i know of who had such reactions were the ones on A/A affinitor and aromasin. Maybe your skin reaction is not one of a side effect origin maybe it is an allergic reaction to the meds or one of them. You have to discuss this with your onc not the nurse. If the onc cannot deffine this or give you an answer then check this out with a good dermatologist and inform him about all the meds you are on. An antibiotic will not help unless it is a bacterial infection to the skin. I hope you find someone who can really help. Most people getting this regimen problem is blood not skin. Good luck and keep us posted.

Shutterbug73

Thank you Woody. If it persists after the Taxotere is stopped I think I will consult a dermatologist. I hope you enjoy your visit with your son.

mikarae

Shutterbug - I had a terrible rash on my neck, chest and cheeks after my first infusion. I was prescribed a hydrocortisone cream that was effective. On my second infusion I took a larger dose of dexamethasone pre-treatment and the Perjeta infusion was slowed down. The rash was reduced dramatically. By the third infusion I no longer got the rash. Hope you find a solution that works for you. Karen

Woodylb

Shutterbug, i forgot to tell you , i did get a lot of dexametazone 12 hrs before my first herceptin/ perjeta infusion and it was given very slowly. So karen maybe right , it may be due to the way it is given . I hope you'll soon find out the reason and get better. Thank you for your kind wishes i cannot wait to see my son and hug him:)) be well .

mygodisavow

Hi all,

Has anyone experienced any bone pain with this combo?

I am starting this regimen in a week and am a bit nervous as I have had a "surge" back in 2012. I was receiving Herceptin and Xgeva at the time and had to add Xelota due to some progression of the disease. The surge completely knocked me down to the point where it was impossible to get out of bed and I was using Fentanyl patches for the pain.

Fast forward to today:

Using TDM1, Xgeva but because of a significant and worrisome increase in lung nodule need to switch to T,H,P for 3-4 treatments.

Aside from not being excited about loosing my hair..booo...the inevitable stamp of the cancer patient..arg!

Worried about being in lots of pain...

Thanks,

Izabella

mikarae

^{Hello Izabella - I experienced terrible bone and muscle pain and stiffness during and after treatment. It has been over 5 months since the treatment ended and the pain and stiffness has not improved. My pain is mainly in my upper back and shoulders. My joints are so stiff} in the morning that I can barely get out of bed and cry from pain when I straighten my arms. Once I start moving the stiffness backs off but the upper back and shoulder pain is 24/7. It's hard to determine if this pain and stiffness is a lagging side effect of the Taxotere or a side effect of Herceptin or Perjeta. I hear you about the hair falling out. My eyelashes and eyebrows fell out again 5 months after treatment. Take care - Karen

mygodisavow

Mikarae,

Looking at your DX it looks like this is the first time you received chemo. Do you have bone mets? ( if so, could the pain be related to the mets?)

My "surge" happened when I was only taking herceptin and xgeva and my doctor explained that it was a side effect of the chemo working on the bone mets. She said that because I was not on any type of chemo it was almost like a shock to the cancer, therefore the incredible bone pain. It went away after about a month of taking the Xeloda.

I still have bone mets but have been taking TDM1, a chemo drug with less toxicity so I'm wondering if I the pain will be back since I have chemo in my body already...

I do know that Taxotere does cause bone pain, just wondering to what extent for someone with existing bone mets.

Woodylb

Mygidisavaw,mikarae,

I know that herceptin may cause some bad ne pain and so fdoes taxol. If you're u have bone mets it may increase it or dicrease it . The taxol it is mainly the joints which become stiff and neuropath is partly responsible for this. Sometimes it is good to have pain if the med it caussing the cells to die. Soemtimes it could be other reason , xgeva also causes a bit of bone pain. If the pain becomes unbearable i think you should both discuss this with your doctors so he can check the readon behind it. My back pain subsided on this combo for now, i have liver mets and spinal lesions whoch are called active. I wish both pain free hollidays

mikarae

Izabella & Woodylb - Yes, I do have bone mets. Several spots in my lower spine, tailbone, scapula, ribs, pelvis and hip. All very small and stable since diagnosis. The pain I experience is in my upper back and shoulders. MO said it does not seem to be related to the bone mets. I did two treatments of Aredia and stopped due to extreme bone pain and stiffness. I take a time released hydromorphone. It helps tremendously. Enjoy the day. - Karen

Shutterbug73

Woody and Mikarae - Thanks for the reply about dexamethasone. I am also taking dexamethasone the day before, during and after chemo. I'll ask them in the speed of the drip might be causing the reaction. The rash doesn't actually appear until about 3-4 days after my infusion.

Izabella - I had an increase in bone pain in the beginning of treatment with this combo, but I also had just had radiation, which they said would cause pain because of tumor flare. I also experienced dry heaves and vomiting (from the antibiotic I was on), which made it much much worse. Now in my 4th cycle my bone pain is almost completely gone. The Xgevia shot seems to cause an ache in the hips for a day or so, but I can feel my pain getting less and less over time with this treatment. Today I'm virtually pain free except for stiffness when sitting too long. Good luck to you!

RonnieKay

I wish I could help as far as rashes & bone pain. I had taxotere/cytoxen/hercep in 09 and had neither of these...but I do think perjeta is a big unknown. We're still guinea pigs, I think, since it's relatively new. They did my perjeta over an hour for over a year, then went to 30 min, now 20...so once your body recognizes it, I think it may get better but Woody's thought of the steroid is good & I agree, consult you mo, even though the nurses are great advocates.

Woody...you always make me laugh!!! You know how badly I want to crack crab with you (kinda like breaking bread!). We found soulmates in our hubbies-lucky us!!! Too bad they had no clue what they were in for with us . Sending love & hope that you're feeling A-OK today!!! Woohoo...you're on track for "I'll be home for Christmas!" Thank God for good blood!!!!

Woodylb

RonnieKay, the feeling is mutual i want to be breaking bread with you also so badly! I have missed your funny posts and missed you.

You know my onc the last time he only gave me a strong anti hitsaminic instead of dexamethazone since it causes me a rash and i slept like a baby during my infusion and had no trouble at all afterwards , plus i take at home a pill like claritin it is called aeirus it is also doing a good job. Now on tuesday , i will have herceptin/perjeta and it will go slow also 60 minutes each , and inwill see if he gives me something with it and post here. Lolll with taxol he is not joking anymore he is giving me a reduced dose for the rest of the treatment, it seems to be working , i am a bit tired specially when i do the neupogen but i do not have black under my eyes like i did before from low blood counts. Let's pray this strategy works. He is also giving taxol slowly . God bless you always Ronnie , with such a great spirit. Kisses

RonnieKay

Woody...I'm so glad you found out the dexamethasosone was the stinker! Claritin is my friend...daily! Did I tell you my nurse a few months back gave me a 10 minute perjeta! I kind of freaked out but did fine. Last week it was an hour. I guess it says on the bag 10-60 min. My herceptin is 30 min & they never vary on that one.

Safe travels home for Christmas! Is it a long flight? We're driving across the Cascade Mts to our home in eastern Eastern. No snow yet, thank God! We have a new car with bigger tires so our snow tires don't fit. We have chains. It's about 4-5 hours and I won't have phone coverage before long..once you're over the mts, it's unpopulated farm land & wheat fields & not much else .

I'm feeling a tad bit nervous...the past few days my back hurt in the evening. I thought it was holding baby...then maybe femara. Today, my r side hurts...pretty harsh. I took ibuprophen...rare for me. It really couldn't be my liver, right? Six weeks since chemo...couldn't be this fast if something's going haywire, could it??? I don't see onc for 9 weeks cause on my next 6 week apt, I'm in CA for grandaughter's bday. Should I call??? Don't want to be a whiner when he's just taken me on...and taken chemo off. Ugh, ugh, ugh!!! Have a blessed weekend all my sisters!

Woodylb

RonnieKay,mi was wondering when you' ll post ! Do not start your panic attacks lollll , you will have some pains, we all do. What do you think these meds we take do to our bodies?? If you are taking femara, you will have pain , i took it for three years, and for three years i had aches and pains . If the pains are inthe same intensity they do not increase and become unbearable, then you do not worry. I know you felt secure when you were taking Nevalbine, but they cannot give it to you forever . If the pain increases then call your doctor, but if it is everyday in a different place and it is a normal pain and aches do not worry. And you can whine if you like everyday hehehe it is ok to whine, it is good for the soul.... ))

My country is not far from where i reside, it is about three hours flight and i am hoping it will snow around Xmas, our house in the mountain is surrounded by pine trees, and beautiful green mountains. My son will be starting his finals today and next week. As for me i will be getting my taxol mondays yukkkk, the third one will be arounf Xmas with hercept/perjeta.

It sounds beautiful where you are going , i hope you have a grand time, stop thinking about the stupid disease though, and try not to do heavy chores , when i move things or stand to for doshes for a while , i get pain too , on my back, but when i rest it goes away. So usually i do not take any pills. So take the worries away, you are taking medication and you will be fine God' s willing. They told me the same thing by the way, if my combo works after six months , they will stop taxol , keep me on hercept/perjeta and an anti hormonal. So it seems like a protocole for maintenance. Let me know before you leave , will you be able to post? If not i want to wish you a wonderful Christmas filled woth warmth and worry free. Xoxoxox

kwagart

I am having my second treatment next week, has anyone else had blurry vision with treatment? I had trouble with taxol but not this bad! I think it is extremely dry eyes, it was with taxol and it Is probably worse because it is now winter.

I will ask my MO, just thought somebody might have some input.

This is making me crazy!

lovecat3

Hello I'm sorry and frustrated to report I've had watery eyes blurry vision for 41/2 yrs

So annoying very hard to keep makeup on read etc! But the Herceptin keeps me safe

I have Kleenex everywhere!!! In every pocket the car in every room etc!

XO

kwagart

lovecat3, glad to hear it's not atypical. It is so annoying tho! I am grateful for the meds and I know it could be worse.