Perjeta/Herceptin/Taxotere

For me the big D from the perjeta can be at anytime.  I've had treatments where it was very bad the first 10 days and then got better and I've also had treatments where the last week prior to my next treatment was terrible.  For me that's the frustrating part as it's totally unpredictable.  I just got a shot of Sandostatin which is suppossed to help with the big D. 

I was also accepted for Perjeta even though I had been treated previously for Stage 1V.  My onc plans to keep me on the Perjeta and either Herceptin or TDM1 indefinitely.  He has advised that early on with herceptin he had seen some women who were stage 1V and stopped herceptin with very bad consequences.  So I'm in in for the duration, which is hopefully many more years.  Just hope that I can keep the D under control. 

I have pretty much lived with the D for a little over 4 years. (with some severe constipation thrown in at times). Would rather have the D than the C! I drink water constantly, keep it by my side 24/7 and make sure that I get salts and minerals as needed. The main problem would be dehydration and I've been able to keep that at bay. The onc does not seem to be concerned other than making sure I keep the fluids coming in to balance.

Oh no. That would be awful! I "go" about 8-12 times a day. And can most of the time control it to the point where I have about 10-15 minutes to find a restroom. I always know the nearest one and how to get there quick!

Bhd for me it was like that. Maybe bc I have GI mets. This time last year I had C and then ended up with bowel obstruction. Went on Gemzar and had D once a day.

On perjeta, herceptin taxotere . I wore depends, did not always make it to toilet , could go 8-20 times a day. Sometimes just water coming out. Had backpack, depends, lomotil, immodium and a powder meds. Nothing controlled it. The cycle we skipped taxotere it wasn't that bad. First cycle I had the Big D 18/21 days. I average 14-18 a cycle. It was bad for me.



I hope I am the exception.

kelly, good luck on tdm 1.  where are you in pa?  i am at fox chase  .  barb

I have this thread in my favorites and read it all the time. I just joined your club as of this very minute..getting my loading dose of perjeta as we speak. My onc wanted it for me back when but Connecticare wouldn't approve it so I was on cabo/tax/ herceptin. I absolutely hated it..severe nausea two weeks out even...no qol. My last scan on it actually showed regression though which I know is great news especially since I've had nothing but progression to the liver for over a year and was really thinking I was real close to the end. But I found it hard to celebrate since the treatment was taking so much out of me. When my onc called the day of the scans to report the regression I asked her if it might be a good idea to try getting perjeta approved through Medicare since I am Medicare eligible as of January and no longer have Connecticare. Got it approved! I know many of you are finding this combo tough..especially with the severe diarrhea but I'll take it over nausea given a choice. Now I feel like celebrating . A 6 cm liver lesion shrunk to 4cm, a 3.7 to 2.9 etc etc. Best report I've seen in a long time! And looking forward to more quality of life.



I know many of you have reported less severe SEs with subsequent doses after the loading dose so I'm hoping. Planning a trip to Florida which didn't seem possible the past couple months. I'm hoping to at least have manageable diarrhea by the third week. I know everyone is different but isn't it better for most of you the third week out from treatment?

Jill, I remember my second one being bad too, but they got better. I can predict to the day what is going to happen to me now after 9 treatments. I go for treatment on Thursday, and my worst days for D are Tues through Thurs after that. Then things get fairly normal. Lomotil has helped a lot too! I am going to Disney World Sunday. My D isn't enough to wreck my normal life. I still go to the gym too. I have had maybe five random days throughout the past six months where I just stayed in because the D was so frequent. I am so glad to hear of your regression. Praying that this works for you!

Ladies I have to say that I've been living with the Big D since I've been on this combo starting in July.  It's been a real learning experience.  As I mentioned previously, for me it's unpredictable.  I can be good the first week and then the big D or I can have the D for a week after treatment and then it gets better.  No matter what, it's usually very bad 48 hours after.  I've recently had to start taking Potassium pills since the D was depleting the potassium.  I have to say that the potassium does give me back most of my energy.  I also just had an injection for the big D called Sandostatin.  It seems to have provided some relief, so I am very excited about that and hope that it continues to work.  The injection is once a month.  I still take lomotil which does help a little, but when it's a bad day it's a bad day no matter what I do.  I get my next treatment tomorrow, so I'm anxious to see if the Sandostatin will help lessen the usual bad day which usually occurs 48 hours after treatment.

Barb,



I grew up near FCC. I'm in Bucks county now. I go Univ of Penn and Aria Torresdale. FCC was not a good fit for me.



I've had the Big D like pearlady, no rhyme or reason. Fine days 1-3 then anyone's guess. I followed brat diet, take lomotil two and a time every 3 hours plus immodium for break through diarrhea and still needed depends. It was worst chemo side effect ever. I spent almost all waking hours in our tiny bathroom. I have some big d with tdm1 but once or twice a day. I normally have warning so time to find bathroom. I went two days without any. I'm not as malnourished.



I had vomitting on perjeta, taxotere and herceptin but I had dairy which normally did not agree with me. Do foods trigger it? I had vomitting everyday with stomach mets but mostly after eating and at the end of the day bc my stomach wasn't able to digest the food. I just switched to less effective reflux drug due to insurance and had more nausea. Back on Prilosec and its working.



Hang in there.

Kelly

Congrats Jill! Awesome news!

So sorry you are feeling so cruddy Jill. Did you get a neulasta shot? That could be the source of your symptoms more so than the chemo. I usually take Tylenol for the joint pain but I think Claritin is often recommended. Its good you called though as they always want to know about fevers. First dose is loading so hopefully future rounds won't be as bad. Rest well.

Thanks all for your input. White cells were ok so I didn't need to leave home. Just took advil and Ativan and went to sleep. Woke up with a fever. Still waiting for the promised diarrhea. On carbo/tax I was taking lots of stool softeners and senna which I stopped doing expecting diarrhea. Instead I got very constipated and have been using enemas and suppositories. My eyes are always tearing and burning since on tax. When I wake up in the morning they are stuck shut with goop until I wash them out with warm water...annoying but not major compared to the rest. I am hoping to at least have one good week before the next treatment. And also hoping that subsequent

doses are more gentle.

Hang in there Jill. It does get better. I felt the exact way the first few and then certain se eased up.

My eyes water so much, I feel like everybody thinks I'm crying. Especially with the runny nose. I've only cried at work 2 times in 16 years. Once when I got the call that my grandmother passed away and the second one the day before my mastectomy. So this is awful.

That doesn't sound good at all, Lori. . Glad you feel better now at least. Hoping round two is much milder.