HERCEPTIN and/or PERJETA Threads
Comments
-
Hi Emily,
Thanks for your PM regarding fasting. How are you feeling now having continued with T?
Hope you are doing well and see further disease reduction.
Liz
0 -
Hello everyone -
Ive just had two second opinion appointments and both consultants recommended that I start Herceptin, Perjeta and weekly Paclitaxel. There is a slight difference in the regime they are recommending and I'd be really grateful for your thoughts.
Consultant 1 says 18 weekly doses of Paclitaxel with H&P every third week. After 18 weeks, drop Paclitaxel and continue on H&P indefinitely.
Consultant 2 says 3 weeks on Paclitaxel and 1 week off (with H&P every 3 weeks). The Paclitaxel would be continued until progression or SEs get too bad.
Would really appreciate anone's thoughts on this.
Many thanks
0 -
Consultant 1 is closer to the general consensus of how to treat stage 4 HER2+ disease. Consultant 2 would provided you with more coverage but will take up a lot of your time forever/months. Time is precious when you are stage 4 - you want the best treatment with the fewest side effects for sure.
It depends on how close you live to the treatment centre and how much time you want to commit to waiting/appointments.
https://www.nccn.org/patients/guidelines/stage_iv_breast/index.html#36
0 -
thank you so much for replying bstein. I'm lucky (?) that I get my treatment at home but the thought of getting weekly treatment ad-infinitum certainly doesn't appeal
0 -
Hi C
I agree with Bstein about time consuming treatments but can't comment on which would be preferable. However I'm hoping you are pleased with your second opinions and left the Hospital feeling positive.
Liz x
0 -
Hi,
My cancer is now Triple Positive with mets to the bones and 2 lymph nodes in my chest. My her2 status changed from negative to positive. I am on herceptin only. I have had only 2 doses. I did have an allergic reaction, so I have to have benedryl and steroids with it. I have read that half of triple positive women get brain mets. I am very concerned about this-as I have sinus headaches and now I am beginning to wonder if I have mets. I had pet scan late February, but I guess it doesn't show your brain. I did see part of it and it was okay. I am just at a lost. Should I be taking a hormone pill also. I did have seventh months of weekly taxol.
Lisa S.
0 -
Lisa, I am About to start tx for a recurrence. The biopsy of my tumour showed ER positive but inconclusive for Her2. However they are pretty sure I am Her 2 again.
Sinus pain- about ten days ago I had terrible headaches and sinus pain. Was convinced I had brain mets and I had a brain CT with contrast on 13 April. The wait for that result was just dreadful. My head hurt on top, temples and even the back of my head. The scan was clear.
The next day I had a scheduled PET scan. My onco called me to say the scan showed chronic sinusitis!
I hope this helps. There is nothing we can take to avoid brain mets. I start tx tomorrow and am going day by day. I totally get your fear.
Best wishes
Liz
0 -
Hi, Liz:
I hope your first THP treatment went well. The first treatment is probably hard, it will only get better after the first one.
I started to have a little bit of neuropathy after my 10th treatment two weeks ago. It felts like needle poked my limbs, each time it lasts no more than a couple of seconds. In a day, it may have less than 10 times. Last couple of days, it happened less, maybe a couple of times each day?. So I am back to my original question, should I continue or should I stop Taxotere at this point? It is not unbearable, it is just strange sensation.
Emily
0 -
Cheesyfroggy, disuss the benefit of Taxotere with the onc. Is it going to have much more impact in preventing progression? If not, I would discuss dropping with your onc. You have had 10 treatments of Taxotere which is more than is usually given when Stage IV is first being treated. You can always go back if there was progression but you don't want to have to worry about permanent neuropathy.
Herceptin and Perjeta are up to the challenge of keeping out mets for as long as possible. Just my two cents. I am on H&P myself and still met free. Never did get mets from the neck down, just my brain met. I was unable to tolerate the Taxol at the time, so only was able to have one treatment. Coming close to six months, new scans to be coming but have no reason to believe I am not still NED.
Good luck with what you decide, but I say again, unless the onc says so, I would not feel bad about dropping Taxotere.
0 -
Hi Emily
Thank you for your good wishes for my first tx. I have had immediate redness and some mild burn on hands and feet with ridges appearing on hands during infusion. I'm with Mara on being very worried about neuropathy; however I have a psrasternal chest mass that is causing compression and that has to be the goal now. I will be in your position at some point though and it's a tough call.
Where are you in terms of the tumours now ( size, location etc). I have heard of ladies going onwards to a 13th tx but not sure there is data to back up the efficacy of doing so.
In the UK 6 is the given number because of the average tolerability that MOST patients can endure, not the no of optimum treatments: according to my oncologist anyway.
Right now I am day 1 post first tx so bracing myself for the storm, especially when steroids are dropped.
Keep us informed on your decision. As a first line tx we do want to give this our best shot.
Mara- so glad to here you are NED and no body mets is fantastic. Best of luck for on going scans but I'm pretty sure you'll be fine.
Liz x
0 -
Thank you Liz, you bring up a good point. Emily, have your tumours been shrinking? That may help your decision if they have shrunk.
0 -
Hello all,
I'd been off this board for awhile but just got caught up. Good luck to those starting H&P. I've had a great run on this protocol. I was diagnosed de novo in August 2015 with extensive bone mets and spinal fractures. I did 6 round s of H&P with taxotere. Continued with H&P, tamoxifen and Lupron. I've been NED for over a year. And earlier this month I climbed a mountain! This truly has been a miracle drug for me. I hope we all can have prolonged, meaningful, enjoyablelives.
0 -
Hi Bluefrog
Nice to meet you! Great to hear your success. I have just had my first THP tx after a recurrence ( 6 years ago had stage 2)
My issue is with a chest mass which I'm hoping will respond and I can tolerate the drugs.
I started a thread called Shadow on chest is recurrence if you feel like checking it out. My ladies on there have literally held me up over the last 2 months. They are awesome.
Liz
0 -
Hi, Liz and Mara:
I still have some small lung nodules, in CT report, it said "several" nodules smaller than 4mm, on PetCT report, it said the biggest one is 7mm. I don't know which one to believe, I would think CT has better resolution and should be more accurate in sizing. Every scan, there was some improvement, some shrunk, some disappeared. But I still have a few left, even they have been "COLD" since my first Pet CT after 6th treatments. My oncologist said the people stopped Taxotere because the severe side effects. She asked me to make decision myself. I am very eager to get the NED status, so I can join the UW vaccine clinical trial, where complete remission is required. I am paying attention to Neuropathy very closely and see what how frequently it occurs. I move my infusion treatment to next Monday, so I have a week to observe and make decision.
Hi, Rachel
It is nice to meet another "frog". "Froggy" was my daughter's nickname when she played Softball. "Cheesy" was her nick
name when she played soccer a year ago. She is not using these names, so I borrowed these names.Was your picture taken one of the national parks in Utah? It looks like Zion, which I visited two and half year ago. Hiking was my favorite thing to do before the diagnosis. I can't wait to go back to hiking once I get my strength back.
Congratulations on being NED for over a year now! From your description, it seemed like you achieved NED with HP alone. Did your oncologist recommend only 6 rounds of THP?
Emily
0 -
Best of luck Emily. Getting to NED certainly tells me more about other factors (trial) which is making your decision that much more difficult. Keep an eye on the neuropathy also. You need qol as well.
0 -
Delighted for you Bluefrog76 that is just fantastic news.
0 -
Hey how is everyone doing? It has been quiet here.
0 -
I am still NED, no brain mets and have not had mets from the neck down. Thankful for that. Other than extra stiffness if I sit too long, no other side effects from the H&P. I proactively take immodium the day of infusion and the day after. It prevents the diarrhea SE that is fairly common with perjeta. I will move to six month scans if NED for my jul/Aug scans.
0 -
I finished my 12th THP treatment two weeks ago. Had pet ct last Friday. Next week I am going to see my MO and find out the results of Pet. CT scan was also ordered but being reviewed by insurance company. If approved , I will do it next Friday. I had a little bit of neuropathy in the first week. I felt more tired than ever mentally and physically, especially the first week after treatment. I told my MO that I want to stop Taxotere now if everything is stable. My frustration with ct and pet ct reports has been from beginning, I do not know how many nodules in my lungs in the beginning and I do not know how many are left and how much had shrink or disappeared. They never bothered to count. I just knew things are improving, but I do not know quantitively how much had improved. But i know I really want to give my body a break from chemo. I do not know if it is true, but I think too much chemo might compromise my immune system.
I found out recently that I have p53 mutation. But do not know what to do with it and what it means of having this nutation, I know it probably not good to have this mutation, I read that 50% Her2 positive patients have this mutation, any one did anything with this mutation?
0 -
Hi
I have just had my third THP. I have mild neuropathy already and my oncologist is considering dropping Taxotere if I have more SEs this time.
Luckily I had a baseline PET and CT. I have a scan on Wed to see what is happening. I'm still confused about how many treatments we should ideally have on this protocol.
Day 3 today and zero energy.
Love to all
Liz x
0 -
Normally you would have 6 to 8 cycles of THP. However, I only had one due to side effects. I still take HP and am NED. Never had mets from the neck down, just the brain.
What I am saying is don't panic if the taxotere is dropped. HP can be extremely effective on its own.
0 -
26 months on from metastatic diagnosis to lungs, spine and hip (her+ er +) and I am stable. Still on Perjeta and Herceptin every three weeks and Zometa every 6 weeks. Still taking arimidex pill daily which is causing me the worst cramps in the history of cramps. Toes, feet, legs, thighs, fingers, arms, underarm, chest, back and neck. Would be interested if anyone else suffers cramps from the arimidex? I am afraid to change this part of treatment as sometimes you just don't want to jinx anything!!!
0 -
I found that I started cramping when I first started Herceptin. I take a magnesium supplement and make sure to drink extra water. Don't have nearly as many issues with cramping that I used to. I know you are taking a different drug BUT it should be helpful to you as well for the cramps.
0 -
I'm at half way point ( 3 THP) but I'm only 4 days post treatment No 3. So I am really struggling with fatigue and low mood. It is the thought of having more of this to come and of course the neuropathy that has started.
I have a scan on 14 June. Maybe that will show it's working. Great to see posts from you guys who are post this tx and holding stable.
L x
0 -
I hope everyone is doing well.
I saw my MO today and received my Pet Ct report. Everything is stable. Even though lung nodules are not decreasing in size but remain "cold". I am going to drop Taxotere from next treatment, which is tomorrow.
I did 12 cycles of Taxotere, Herceptin and Perjerta. I am so grateful that I did not experience too much side effects besides fatigue and anemia. Praise the Lord !
0 -
After a month or two, you should notice a decrease in fatigue when just on HP. Good luck going forward.
0 -
Hi all, I finished chemo two weeks ago and began my H&P from now until forever last Tuesday. So far no SE's from the combo except possibly some itchy, red skin but it started a week after the infusion, so who knows. I'm happy to see it working so well for many of you.
0 -
Just passed my 4 year cancerversary. Doing well on H&P....still here!! Been a long time since I've been on the boards checking in with my H&P sisters. Peace to all of you
0 -
I have been on H & P since December 2014. I have been NED since April 2015. My echos have been good no drop in LVEF so far. I do take Metoprolol and Lisinopril which I have been prescribed for years due to hypertension which runs on both sides of my family. I have been told that taking Metoprolol helps protect the heart on Herceptin, it helps your heart strength. I have seen other women who said their Oncs prescribed Metoprolol to them as it protects the heart function. Hope this information helps you. I also exercise daily which I think helps the heart also.
0 -
Huge thanks to all who post on this thread to let us know how they are doing on HP. It is a true inspiration for those of us who are currently coping with this treatment.
Does anyone have any experience of completing less than 6 Taxotere treatments before continuing with HP?
Liz x ( half way through THP
0
