HERCEPTIN and/or PERJETA Threads
Comments
-
Positivenegative and Pwilmarth - thank you for your suggestions. I will try both ideas. Really appreciate the info.
0 -
Do you-all really think the neuropathy is from H&P? I have a tiny bit of squishiness in my toes, and I just assumed it was from the six rounds of Taxotere. Is there evidence that H&P by themselves cause neuropathy?
0 -
In my case, it's not from H&P. I developed it while I was on Taxotere - which is a common side effect of Taxotere. While it isn't gone, it's significantly better. I just accept that it's a permanent effect of the taxane I was on.
People often get confused and think that it's the result of Perjeta, but Perjeta has nothing to do with it. If you go on the Perjeta website, you have to read the documentation carefully. They aren't saying it bluntly, but they mean to say that it's a common side effect of Taxotere.
0 -
my neuropathy was as a result of taxol. I had H&P with taxol until the neuropathy and heart got to bad.
0 -
i was diagnosed stage IV 8 years ago. I did 6 months of taxol then. No problems with neuropathy at the time or in the last 7 years. I am now on herceptin (8 years), xeloda (3 years) and perjeta. My onc. Thinks it's the perjeta, but after 8 years of treatment who knows. Will talk to him more about it next time I see him. I miss all the walking I used to do.
0 -
I have thought the neuropathy on my feet was caused by the 8 rounds of taxotere. I iced my mouth and hands which are fine but neglected my feet until round 5. I have some burning with long walks but have learned to live with it. I'm assuming that it will not worsen with Perjeta. Not sure how it would worsen as it's an antibody that presents the cancer cell to your T cells! Anyway, I think the biggest side effect of no treatment is death so I will cope with them! Go H and P
0 -
Hi Ladies,
Just updating myself on what has been happening over past while. I had 9 rounds of taxotere and thankfully experienced no neuropathy. I was only delighted to come off chemo and finished my last one on 29th September 2015. Have been on H/P since and thankfully all is well, have a few side effects, mainly muscle cramping which is worse when I am resting. Every now and then I come on these threads to keep abreast of what is going on and 9 out of 10 times I leave the treads feeling good about life as there is no better medicine then hearing how H/P is working.
0 -
Judo - so glad to hear that you are one of the H&P success stories!
0 -
sitting at my cancer center waiting to get hooked up! I wonder how many treatments it has been since October 2012?!!! I LOVE my chemo nurses! I love the dr's and nurses and assistants here. I trust them. I pray for them and they pray for me. I am truly blessed to be so supported in all aspects of my life. H & P has been my miricale drug combo. It has allowed me to see my son into 7th grade this year (playing football for the first time--eek!) and my daughter to start kindergarten!!! I am hoping to ride this H & P train for many, many more years! And I so hope and pray this combo does the the same for all of you! It has not been easy, but I'll take it. Hang on ladies! Keep on keepin on
0 -
Awesomeness Kjones
0 -
Anybody out there ever been able to have perception Pereira two days early? I know it's every 21 days but scheduled conflicts...... I need to go on Monday instead of Wednesday.....
Just wondering if it had to be 21 days.....
0 -
Haven't posted for awhile-hi to all! Still on Herceptin and arimidex and still doing ok, although not completely sure because I haven't had a scan in a year. But blood work is fine and no new symptoms so I'm avoiding that stess for now.
I've been on and off Perjeta 2 separate times and going back on (without taxotere in the picture) did aggravate my neuropathy. So I think the potential is there with that med.
Kjones- sending you a hug from a fellow football mom! My son started as a freshman and fell in love with it. We've survived 2 seasons with only a broken pinky finger but now he's on varsity and I worry a ton. But I also love the confidence, discipline and leadership experience he gets from it. I hope your son has a great season
0 -
babyduck, my doc is willing to give perjeta laye, but not early. Idon't know if that is just his personal preference or if there is a good reason. Would be curious to know what your doc says. Best regards- SUE
0 -
Babyduck - it's not a problem. Two days isn't significant. I have varied between Wednesday and Friday on my infusion for months. Sometimes it's early and sometimes it's late.
I think it would have to vary by several days for it to be a concern.
0 -
babyduck, I have had it three days early before, with no problem.
0 -
Hi Everyone! It's been a long time since I've been on these boards. Been a busy summer, and I have been working and vacationing with my family. I feel so lucky to be feeling good and in solid enough shape to do so many physical things like canoeing, kayaking, backpacking, etc. I quit Taxol mid April after 15 weeks as my scans were showing everything decreasing, so my onc has me on just the H/P combo every 3 weeks with Xgeva every 6 weeks. So far so good. I have another scan coming up end of September, but my tumor markers are way down. CA27-29 is now just 15 and CEA is just 1.3 so everything is normal which continues to thrill me each time I see those normal numbers. I am hopeful the scans will continue to show shrinkage of the remaining lung and liver tumors.
As to the question about early or lateness in treatment, I too have had adjustments to mine a few days here and there with no issues. In fact, I was able to go almost 5 weeks between treatments due to a family vacation, and I was also able to do a treatment a few days early once, so I think it shouldn't matter too much. I wonder if it boils down to insurance and if they will allow a few days early. I had that issue when trying to get my Letrazole refilled. I could only get it refilled when I had 6 days left in the prescription, but not earlier.
0 -
Babyduck - my onc said it is NOT ok to get H&P early (less than 21 days), but it is perfectly OK to get it a few days late. Why don't you schedule your infusion for the following Monday?
0 -
Thanks for the response on the question.
Gonna just call Dr Monday and see...I don't want to post phone because I've done that a few times.
Either way I appreciate you all chiming in.
Have a Blessed Sunday!!!!
0 -
Baby Duck, the best person to ask is a pharmacist. Because this is about how quickly the drug clears from your body. I am not a pharmacist (I am a registered nurse) but I've read enough package inserts with all kinds of meds that I have a good understanding of the technical language.
I read the prescribing information for Perjeta. Nowhere in the package insert does it say anything close to "every 21 days". It says every 3 weeks. So how is a lay person supposed to interpret this?
The answer is in the half-life. For Perjeta, the half-life as reported by Genentech is 18 days. More detailed data from clinical trials report a half-life from 11.1 - 22.3 days. Typically, you get a loading dose - 840 mg - with the first dose and thereafter, you receive a maintainance dose (420 mg). By day 18 after your infusion, you will have only half the drug in your system - possibly less. You receive your maintenance Perjeta somewhere around day 19 to 21 and the levels of Perjeta return to a therapeutic level - which is what you want.
Keep in mind that a therapeutic level is a range and not an exact number.
You have to miss Perjeta for 6 weeks before they have to re-administer the loading dose of Perjeta to get back to a therapeutic level.
For Herceptin the half-life is as little as 2 days and up to 28 days depending on how active your cancer is. The more cancer cells you have, the shorter the half-life. The more responsive your cancer is to Herceptin, the shorter the half-life. But the half life that is generally reported to prescribing physicians is 18 days because the level of the drug stablilizes in your system as cancer cells die from H&P and chemotherapy - what a pharmacist would call the saturation point. Interestingly, it takes up to 20 weeks for Herceptin to completely wash out of your system after stopping treatment.
I didn't catch if you are receiving chemotherapy, but these drugs also have half-lives. For example the half-life of Taxotere is 12 hours. The mean half-life for Taxol is between 3.0 and 52.7 hours
The timing and scheduling of all drugs is based on their half-lives. The shorter the half-life, the more frequently you have to administer it to maintain a therapeutic level in your body. Sometimes pharmacists call this the saturation point.
I think it's understandable why many people have some anxiety about receiving their H&P too early, but the drug levels fall every day after day 18. So I would question your schedule if your infusion is scheduled before day 18.
0 -
Hi All -- The cardiologist put me on Carvedilol/Coreg today. Just wondering what side effects I can expect.
0 -
The most common side effects are dizziness, fatigue and low blood pressure - especially something called "postural hypotension" which means that you have a dramatic drop in your blood pressure when you go from a lying to sitting position or you go from a sitting to standing position. If you have this, you will notice a sensation of dizziness or light-headedness when you engage In these activities. If you experience symptoms of hypotension, just be aware that you are at increased risk for falling and take precautions.
Less frequent side effects include diarrhea, a slow heart rate, swelling of your feet and hands and difficulty sleeping.
Co-reg is considered a beta blocker, which means that it offers you protection against heart failure from Herceptin and it also decreases the chances that your cancer will become resistant to Herceptin.
0 -
Bumping this thread up again. My tumor markers were normal for the 12th straight month.
sj
0 -
So glad to hear that Scrunch!
0 -
Fantastic news scrunchthecat!
I had a PET scan last month. Bone mets did not light up but one supraclavicle node did. Best scan yet and I am very happy!
Thinking of you all - Karen
0 -
Great news, Susan, great news! I'm still riding the NEAD wave.
0 -
Does anyone on long term Herceptin and Perjeta feel slightly "flu ish"? I have perfect lab work, stable mets, no progression....but I never am free of this feeling. I was wondering if anyone one else has this. I have pretty bad intermittent muscle spasm and cramps and of course the big D. Thanks for any ideas. Brend
0 -
congrats scrunch, Karen, and Maine! All good news worth celebrating!!
Beatmon--I guess I am a long term user...I don't have any flu like symptoms and can't recall in the almost 4 years on this regimen ever feeling that way. Big BUT here, I always feel run down, I always have stomach issues, I always have stiffness in one joint or another. I don't even remember what it feels like to be normal. I have just accepted the fact that this is as good as it's going to get...and I'll take it and keep on going! Oh and I never had a cramp ever until on these meds. Weird
0 -
It's great to hear from everyone. I was just thinking how quiet this group has been but hopefully it's because everyone is doing well and out living life!
I am 18 months out from my stage IV diagnosis and have been NED for over a year now. Herceptin and perjeta every three weeks. Worst SEs are itching and diarrhea and cramping. I have been taking magnesium and potassium supplements though and it seems to help with the muscle cramping. I can't believe the weird places I get cramping (like my jaw - super painful)
My doctor is suggesting another scan in December and if all looks well again to drop the perjeta. I told her I would think about it but I'm not sure what I will really do. I would, of course, welcome a break but don't want to do anything to invite this cancer back.
0 -
I've not been without Perjeta....as you haven't either josalive. So much of what we read about long term Herceptin ladies is about how good they feel.
My concern is after dropping Perjeta, if the damn little boogers go crazy again, then are we back to big chemo again? No hair..no wbc etc?
0
