HERCEPTIN and/or PERJETA Threads
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Dear LoriCA, thanks again for your story and advice. I really hope it didn't morph to triple negative, and yes, they ordered a biopsy, asked us to calm down and said it is worth to wait for results. Oncology drugs are covered by the state here, and as I understood, once it is written on paper that you progress, you cannot longer be on them. But Sandra's case, as they said, was not common, and they seemed to be willing not to let HP go. Hope they will find ways to wrap up that candy into needed paper if we face some strange situation (different ER/PR/HER in breast and liver?). Being NED in the rest of your body and then progressing in the breast is a bit crazy... Anyway, they all were very warm and encouraging. Actually I was not expecting that:) I am calmer today after the meeting but I know anxiousness will comeback soon... waiting is always the worst.
Andi, thanks for your support. Bella, it is totally otherwise in our situation than yours - first time we didn't have redness or swelling, now we have it. Ehm... Biopsy will tell it all. I'll keep you all posted. Thank you all from the bottom of my heart,
Saulius
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Lucky me had the swelling, redness and obvious skin changes both times!
The waiting is always the hardest part Saulius, once you have a new plan you will both feel better. Local progression isn't considered the same as metastatic progression, which is why we can usually stay on H&P. Glad to hear that you got good feelings from your oncology team.
Andi you raise a good point about the financial aspect of load doses. The dosing guidelines from the manufacturer say if the infusion is missed by more than one week a load dose is required (for both weekly and every 3-weeks), but I have gone more than two months between infusions and my MO thankfully didn't require me to have a load dose. I guess some MOs strictly follow the guidelines and others believe it isn't required.
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Hi Andi,
Great to hear from you. I remember chiming I’m on the loading dose debate. Back in Jan I had a 7 week break and my onco was happy for me to have a normal dose. Interestingly, he said he would inform the pharmacy as they automatically make up the higher dose if they see you have had a break over a set number of weeks. I was really surprised to hear this.
Mommy Erin- how are you feeling now? The SEs appear to be very random on HP and can hit us sometimes and then not at all. I find it very unsettling when this happens. My anxiety was higher after the extended Christmas break and yet all was well. I do hope the tx continues without a problem Mommy Erin.
Salius- sorry to hear of your wife’s progression. Lori’s post seemed full of good advice and hopefully you will find a way. Let us know the outcome of the MDT.
Lori, hope you are doing ok and sending my best wishes to al on this thread. I scan in early March. Anxiety building....
Liz
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Hi everyone - I’ve been on Navelbine and Herceptin for the past 6 months but now have had some progression. My MO is wanting me to move to low dose Taxotere (2 weeks on, 1 week off) with H&P every 3 weeks. Has anyone on this protocol now or done this protocol previously? I would love to hear some personal experience.
Thanks in advance, Southern
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Dear all, we're after MDT yesterday: the punch-biopsy showed no change in cancer type in the recurrent breast (ER- (0%), PR- (0%), HER2+ (100%)) and they decided that best option is to keep HP treatment re-adding docetaxel (Taxotere). We were a bit surprised (maybe hoped for surgery or radiation) but were explained that last time response to THP was "fantastic", and they said they hope this time it should work well too. Hope so. It is bitter-sweet, of course, as we have a plan and we are calmer but docetaxel for the second time after 12 cycles finished just 10 months ago will be very difficult. My heart cries for my wife, I was holding her yesterday as she cried. I personally asked our doctor about surgery later if treatment is successful but she said that "option would be not standard but we can always discuss things". So... We will start chemo on Tuesday. With this I wanted to ask you which, from your experience, supplements should be not taken while on docetaxel, as they might make metabolism faster, diminish docetaxel performance and so on (we started taking them after completion of of docetaxel last time): NAC, ALA, Cordyceps, Zinc, Reishi-Shiitake-Maitake complex, fish oil with vitamin D? The problem is we are afraid to go off anything, if not in need, as her liver is completely NED on past 4 MRIs and we don't really know what is holding it in such a good condition (for sure HP but something else might also be a contributing factor). Any advice would be very appreciated...
Dear Jackboo, LoriCA, Bella, and others, thank you for your support and advice, they really keep us believing and going forward. Thank you so much...
Dear Southernsurvivor: I never heard of such protocol but it does seem quite logical as docetaxel is standard in Cleopatra protocol but maybe too harsh to be continually on? There is weekly low dose paclitaxel protocol her but I didn't hear of 2wks-on-1wk-off for docetaxel...
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Saulius so much of your wife's path mirrors mine, although I did paclitaxel (another taxane) both times. I was resistant the second time around and I truly hope she has better luck than I did. IBC is sneaky and stubborn and frustrating. My MO didn't want me on any supplements other than the Vitamin D I was already taking, and he okayed trying potassium and magnesium to see if it would relieve the muscle spasms I've been having (it didn't), but I think that was only his personal feeling, not that they would specifically interfere with the chemo. He does support integrative treatments but laughs at the idea of supplements having any effect on cancer.
My radiation oncologist wanted me to wait until I was chemo-resistant before resorting to radiation since you can only do it once. It makes sense that they would want to try chemo again first, but if the IBC continues to spread while she is on Taxotere, you might want to push for radiation again. Mine was spreading too fast to waste time trying a different chemo (in fact my radiation plan changed twice in the first week to include a larger area due to the spread). They typically use a higher dose of radiation for IBC than for standard breast cancer, 50 gray is common for non-IBC but with IBC they often will use 60-72 gray and my RO said she is going to push the limit. I started in January and probably won't be finished until April. It appeared to be radiation-resistant too (not uncommon with IBC), but after 3.5 weeks, part of that time using a bolus, it finally started to respond. They just redid my plan again last week because I lost a substantial amount of soft tissue from the rads.
Keep holding her while she cries, that's all we really need sometimes, just to be held. It helps keep us strong. Sending a virtual hug to both of you.
SouthernSurvivor I never heard of two weeks on, one week off either. Maybe because it is low dose? If you haven't done a taxane before, my only advice is to keep an eye on the neuropathy. The risk is worse with taxol than with taxotere, but it's still there. Consider icing your hands and feet during infusions. I have several friends in my support group who need to use a walker or cane because their neuropathy from taxanes is so bad. I'd rather ice my feet than end up having to use a walker.
Hi Liz, great to see you! I'm hanging in there, worn out from daily treatment and sometimes having to visit multiple facilities in one day, but now that things are finally starting to look better I'm determined to stick it out and the depression is starting to lift. Hope your scans go well!
Hope everyone else is doing well!
Lori
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I also stayed on H&P during radiation
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Ah Lori, thanks for all the details. I hope very much she responds to docetaxel, doctors hope so too. Last time we quit it after 12 cycles (9 months) not because of resistance but because of side effects. Her's spreads not so fast (maybe HP are working a bit): in 7 weeks area of ~2 cm around areola got red. Let's pray treatment works. Best wishes to all,
Saulius
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Hello Mets sisters,
I am on this blog reading the posts daily and have not really posted too often.
I have a large mediastinum tumour behind my sternum and a few ribs with Mets.
I started THP IN Dec. 2018 and I had my first CT scan last Friday.
I was initially advised by my MO that I would likely need taxol for one year.
The results are Now in from the CT scan and I am overwhelmed.
The tumour has shrunk a bit and everything else is stable!!!
My MO now advises that I will complete four more THP treatments. A total of 6 cycles. Or 12 treatments with taxol
Once that ends I will no longer be on taxol and I will receive just H and P
I have a few questions:
Has this happened to anyone else? That they were Originally slated for more taxol and then taxol treatment reduced after a positive CT?
My immediate response was should I just stay on taxol for more treatments to really shrink that mediastinum tumour? The MO said no because H AND P will continue to shrink the tumour . Have others notice tumours shrinking just on H and P Without taxol?
We are planning a trip to Aruba in Nov 2019. I will be done taxol on April 2019
When I called to apply for travel insurance the stipulation is one can not be on Chemotherapy or radiation 90 days prior to depart date. I know that H an P are monoclonal antibodys but just a bit nervous that. H and p are also considered chemo? Thoughts please
Finally I am so overwhelmed and thrilled with my response to THP ANd more excited to get rid of taxol in April rather than Dec. I would love to hear how long this treatmight might last before progression. Can I hear from others how long you have been on H and P?
Thank you so much time for your time reading this long post and your responses to same.
cathy
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Hope you will be on h&p forever unless it stops working. Is is the taxol that is working or the H&P? You have no hair now maybe 8 rounds of taxol and then H &P. Look up the Cleopatra trials that what your treatment has been based off
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Dear Perjeta/Herceptin w Zometa Girls,
Hope we all go on forever on this treatment. I am also taking Her/Perjeta every three weeks with Zometa every six months. I just had an episode of extremely painful joints—some joints have not fully recovered like hands—and swelling of my hands. I suspended Minocycline which was prescribed for a hot rash on my face, the antibiotic also helps some stomach issues. The pharmacist thinks it could also be the Zometa, which can cause symptoms a few weeks after it is given. My Onc just ordered some inflammation markers tests and is sending me to a rheumatologist. I have some questions: 1. Do any of you have swelling joints? 2. Did you have to stop Minocycline? 3. If so, what did you replace it with?
Wishing you all great health!
Thank you so much in advance for any advice...
P.
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hello ladies. So sorry if one of my questions is not clear is how many years are some of the ladies lasting on h and p before progression.
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Hi Hopeful,
I was on THP from October to April 2018, until my body said NO MORE. My doctor said her goal was always to do as much Taxol as I could take, and it worked. I am on HP and still here, doing well.
Regarding the insurance, if something happened you will have a hard time arguing that H&P are not chemotherapy drugs. Still, I think it's always a good idea to buy traveler insurance.
P.
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thank u pdi. Were u ever stable during oct to april2018
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Hi hopeful,
I did 4 Taxotere with HP when I was dx with a mediastinum tumour in March 2017. I was due to have 6 T, but I was struggling with side effects and I had a good response when I had my first scan in June so my onco advised me to carry on with HP. I got to NED, exact date has slipped my mind,and my scan last week is clear. I have had a good run on this regime.
Liz
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I am going into my 5th year of BC without progression from neck down. Had Herceptin first and then the Perjeta was added after my brain met presented itself. I am NED from neck down.
The important thing to note is that these drugs do not cross the BBB to the brain. Having a brain met does not mean these drugs don't work. I am rare in that my cancer did not go to the body first. My medical team appreciates having my case to study. I just appreciate still being stable for as long as possible.
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HopefulGirl- I achieved NEAD with 6 cycles of TCHP and have continued on HP since (19 months). I’m 2 years out from diagnosis and tolerating HP well, still NEAD, so staying the course. One woman I see regularly during my infusions has been on HP for 5 or 6 years (maybe longer, can’t remember exactly), and she just dropped P because it started bothering her stomach, but she’s continuing with H. She’s not NEAD, but she’s stable and has been for a while.
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Hi Hopeful - I am in my 6th year of NED with H only. Started with both H and P but side effects from P were quite bad for me, so my oncologist suggested dropping it. I have another scan coming up in April and am hoping that nothing has changed!
XO
Andi
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Hi all and thank you for your responses
Liz do you mean that your mediastinum tumour isno longer visible on your scans. If so that tumour contine to shrink to nothing on just H and P? I am so happy for you and wish you many years on this treatment plan.
Mara sending you hugs and positive vibes that your brain Mets stay stable and there is never progression from the neck down.
Erin, so pleased to hear you are also NEAD ... did you arrive at NEAD during taxol portion of treatment or on H and P? so interested if H AND P works on shrinkage after taxol is taken off the treatment plan...very encouraging story of your infusion met sister. Thank u for sharing..
Andi, wow 6 years. congratulations! What were your side effects with P? I have developed a skin issue on face that looks like rosacea and it is awful. Seeing a dermatologist as soon as the referral gets mailed out. Bald and acne. No fun. Another met sister advised that they perjeta is the culprit. Good luck on your April scan.
Cathy
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Hopeful - side effects were neuropathy - which I had already developed in my feet from the Taxol and H/P Chemo combo....but P made it a lot worse. Also, all over achy body - especially joints. No problems with skin. My nails have never been the same - they are terrible - but I can live with that! Moving to Herceptin only helped, although after each Herceptin infusion (I don't always get them every 3 weeks) my neuropathy is a lot worse for a week or two. My oncologist swears that Herceptin doesn't make it worse, but I know from connecting with other women on this board who have been on Herceptin for years and years that it definitely does. Thanks for the support on my April scan!
XO
Andrea
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Hi hopeful,
Yes I got to NEAD one year on from my dx on HP alone. I only had 4 Taxotere. I believe there is just scarring visible now but I did have a complete response.
Liz x
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Yes, I was stable and eventually I got to NED. Any of you on Minocycline?
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very encouraging
. Thank u ladies. I hope you all have a great weekend
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So my hair is not coming in like it did before, it's very patchy and just kind of weird. I asked my Onc about it and she said she's had one other patient that hair didn't come back
The only thing she could recommend was this vitamin, over the counter, for hair, skin and nails, has something called Biotin in it. It actually has helped my hair just a little bit so far, but it has also helped with the big D that Perjeta causes, at least I think so. Since I started taking it, I haven't had the big D one time! Could be totally coincidental, maybe my body has adjusted to Perjeta, but thought I would share anyway 0 -
Hi Hopeful,
I did 15 weeks of Taxol with H & P starting in January 2016 and Since May of 2016 I've just been on H&P since then. I didn't have complete response with the Taxol, but it knocked everything way down and I've been stable ever since on just the H&P. On the travel insurance question, when I went in for my CT scan while just on H&P, I checked "yes" to the question "are you currently in chemotherapy". When they found out I was just getting H&P they said, "oh that's not what we consider chemo". So, I think you might be fine getting the insurance.
On joint questions and neuropathy, I do have pretty bad numbness in one of my feet. I can live with it, but it is very noticeable when walking, I've had some weird cramping kind of things in my fingers sometimes too. I also get some major muscle cramping too in my legs and feet, but I definitely find it is somewhat related to hydration. The more hydrated I am, the less bad it is.
But, I Just had my scans a few weeks ago and things are still stable. So I'm grateful for these drugs despite the odd side effects.
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hello Djhoff, thank u for your response. I am thrilled to hear you are doing well on h and p alone.
I will have my last taxol this coming Monday April 15th. In all I have had 12 treatments. I am looking forward to being done taxol and carrying on with h and p.
I hope we both catch a break and last a long time without progression.
Cathy
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Hi DGHoff,
I am about to have another HP treatment. It is always encouraging for me to see others who are on HP as a first line treatment. I started HP alone after 4 Taxotere in August 2017 and have been on it ever since.
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pdlc436: you did taxol for quite awhile. Did you have much neuropthy? Neuropathy is one of my biggest worries. I am lined up, for now, for several months.
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Elderberry I've done taxol twice - 6 months the first time, only 2 months the second time because it was obviously not working. I have minimal neuropathy, no numbness that makes walking or tasks difficult, just feels like my feet are on fire and it can get really bad at night. It's annoying but not debilitating. I take gabapentin for it. I didn't know to ice the first time but I did ice my feet the second time (I haven't had any problems with my hands). Herceptin was already making it worse and I didn't want to take any chances when I went back on taxol.
It seems to be hit or miss as to who gets it and how bad. I have friends who need to use walkers or canes because of neuropathy. As soon as you notice any signs of it you need to start talking to your MO so it can be monitored. If it gets to a concerning level they will discontinue taxol.
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LoriCA - thanks. Did you get those special socks/gloves? I have gel packs that can go in a freezer. I could buy more so they can be swapped out during the sessions. Hair loss is no biggies --- losing my hands is BIG
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