HERCEPTIN and/or PERJETA Threads
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According to my oncologist, four to six months of Taxol for MBC as a first line treatment comes from results of a clinical trial or trials, where that was the duration used.
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Anotherone- I dropped Taxol after 15 weeks because I was experiencing neuropathy in my fingers and toes and my scans showed so much improvement that my dr felt it was time to quit. 12 to 18 weeks is pretty standard, I think.
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I also had 6 cycles of Taxol. My treatment plan called for 8 but my neuropathy was so bad that my oncologist was afraid it would spread and cause serious damage. As it is, I still have no feeling in my left foot and balance issues 7 1/2 years later. I was on HP for a year and then dropped P. I think that the H alone also aggravates my neuropathy and I know there have been others on this thread that have said the same thing. As I have mentioned in the past, I have taken total "vacations" from H and have noticed a big difference in how I feel/my left foot. However, no where near wanting to drop altogether.
Shetland - I could be wrong about the run down/SE's, but that is what I attribute it to. I need to keep some sort of diary and write down whats happening with me around the time of my injections. Also, I have noticed that the fatigue is worse with the injections vs. the infusions.... although too late at this point since I had my port taken out!
Renee - great to hear that you have been on H for 11 years! That is amazing...…
Hope everyone is having great weekend!
XO
Andi
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Andi , I have no feeling in my right foot. Well, I sort of do, but it is more like tingly pressure. And if I walk a lot in certain types of shoes I get pins and needles feelings on the bottom of both feet. Zero drop heeled shoes make a huge difference for me and my foot comfort.
My clinic still doesn’t do injections so I don’t have a choice in the matter, but I don’t have a port anymore either and still get infusions. It just means an IV once every three weeks. It isn’t so bad as long as you have some good veins. I hated my port so I’m glad to be rid of it. The trade off was totally worth it to me.
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Hello ladies, I don’t post often but read all posts daily. I am so happy many of you are doing well on H and P.
I have now been on H and P one year after 6 rounds of taxol. I am now enjoying 6 weeks in Florida and loving it. I am Canadian and I do have 2 flights back home for my treatment but it is still worth it.
No real SE’s but fatigue. I nap daily for 45 minutes.
sending positive vibes to all and much love. Cathy
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Reneeswan: I am glad you popped in with a post. I look for your name. I had 6 Taxol then stopped and just have H&P every three weeks. My SE's have been minimal. Little spots on my nose that only I seem to see, brittle finger nails. I asked about dropping Perjeta and got a flat "no" from my MO. I guess he figures if I am tolerating it so well I should continue. I am just coming up on my one year "anniversary" of my DX. I hope I get as good a run as you are having.
Blessings and best wishes to everyone.
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Question regarding Herceptin every 3 weeks without chemo: Has anyone experienced hair loss? How about neuropathy — do I need to ice my hands and feet? Getting first infusion tomorrow.
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ShetlandPony: I have been doing H&P since September after finishing Taxol in August. My hair has come back and is soft and curly but my nails are still crappy. I haven't had much in the way of neuropathy with no icing. Just the very tips of my thumbs feel like they are calloused, less sensitive than my other fingers. It was suggested I do Vit B12 (1,000- 1,200 units) to help with neuropathy. I do take it but I cannot swear to its efficacy. I may just be lucky. I do get fatigued the day of infusion and maybe a bit the next day but I am functional. I don't feel the need to nap. Good luck with your Herceptin. Do you have a port? Other than how lumpy it looks, I am happy to have one.
Blessings.
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Herceptin definitely won’t make you bald like chemo does. My hair came back thinner and sparser after taxol but no bald spots. I don’t blame Herceptin, I blame aging and arimidex for this.
No neuropathy except a little tingling in my toes sometimes, could also be residual effects from taxol in my case.
Herceptin is much easier to tolerate than the chemo drugs. The worst part is the risk of heart failure for which you will most likely have regular echocardiograms.
I hope it works well for you, Shetland
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My hair has thinned over the years quite a bit, but I don't blame it on herceptin. It came back thinner after taxol. My eyebrows never came back after taxol and my eyelashes are only half the length they used to be.
I get a echocardiogram every 3 months. Except for some neuropathy I feel pretty good on herceptin and perjeta.0 -
Thank you for the responses.
Elderberry, do you think your slight thumb neuropathy is from Taxol, or Herceptin? I do have a port. It has saved me from so much pain and stress.
Olma, yes, the trial requires regular echoes. I am waiting to get back the 3/4 of my hair that three doses of eribulin took. The bald patches are filling in, but it will be a long time to get any length back. Good to know it will probably keep growing on Herceptin. If the trial drugs work, I may get to have normal hair again. If they don’t, I’m probably in for a taxane and baldness again.
SUMMIT trial for Her2 mutated cancers. Neratinib, Herceptin, Faslodex.
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ShetlandPony: Yes, I am pretty sure it was the Taxol that caused my thumb thing. It has not become worse with Herceptin. I was as bald as a hard boiled egg on Taxol. I like the hair that is coming back. I used to colour it but the grey that I have is quite becoming. Hee hee. I had chin length hair (elbow length in my youth) but I actually like it quite short now that I can see what I look like with it so short. My eyebrows which were pretty thin to start with vanished on Taxol. They are also coming back. I use "RapidLash" to help promote growth.
I do an echocardio every three months. I have AFib and so far, so good. I am ticking along nicely.
I think you'll do just fine. Are you back to dancing?
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does anyone have fatigue on h and p? Some days I feel like I he been hit by a Mack truck.
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Yes, I have been dancing. Although the herceptin infusion every three weeks is going to interfere with that evening’s class. I can’t see myself attending it on herceptin day. During and after my first infusion I got chills /rigors and generally felt ill. I threw up on the way home, not sure which drug(s) caused it. It felt sooo good to fall into bed and get under the blankets.
I did not know that the first dose would be a loading dose. If I had known I would have asked for it to be dripped slower than the standard 90 minutes for the first dose. I have asked for subsequent doses to be 90 and not the usual 30 minutes.
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The load dose of Herceptin can be brutal Shetland, I had chills and horrible bone/joint pain and felt like I'd been hit by a truck while having the flu. I was so miserable. I had a lot of nose bleeds in the beginning too, for several months. One day I bent over to pick something up and left a puddle of blood on the floor. But subsequent infusions will be better, after a while you'll hardly notice - except for the constantly dripping nose haha! Stock up on kleenex now and get ready to explain to people that no, you're not sick, it's just a SE of your treatment.
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Oh dear, I already have eyes that tear and a nose that drips. I have to explain that I am not crying, I just have dry eyes. I got some old-fashioned, pretty hankies so I can tear and drip with style.
That’s good to know that herceptin days may improve.
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Shetland et al: I get really tired the day after Herceptin. Otherwise my energy is as good as I can expect from an Old Fart like me. I do have a slightly drippy nose. Overall, I don't find H&P to be all that awful especially when compared to Taxol. I saw your other post in What I Wish My Friends Knew. Shetland, it makes me sad to know you feel sad and lonely. Friends will never fully get it even when they think they do. They think saying "But you look great" will make you feel better. No. It doesn't. We have to accept that they won't/can't get it. Their lives are unfolding before them and the final chapters in their lives feel a hundred years away. We are only too aware of our mortality. I hope you will start to find Herceptin easier soon.
Blessings
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Thank you for your kind words, Elderberry. It’s true, friends and even family don’t really understand what it is like. It’s good they don’t have to live with the burden we live with. This cancer puts us into a different world. I don’t have a large circle, but a few friends who are very good people. They would show up in a crisis (they have). But for the times when I am unwell for several days in a row at home, or trapped in the hospital, and I start feeling more lonely and sorry for myself — that does not sound like a crisis for which I can ask them to change their plans for the day. Thank goodness we can always come to BCO where our stage iv sisters understand.
It is helpful to know I should plan on a down day after the herceptin infusion. Here is something amusing about the tearing eyes: I took a nature walk with a dear relative, and I was exclaiming about how beautiful everything was. Near the end of the walk I mentioned that I was dabbing my eyes so much because the breeze made them water. She said, “Ohhh! Yeah, I thought, geez it’s pretty, but come on!”
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Now that we're on the topic of fatigue, I never noticed any more fatigue the day of or after my H&P infusion but since I've been on kanjinti I've been exhausted after the infusion. Third one was this week...I slept for 14 hours the night of and 12 hours the next day. I felt exhausted by the end of each day. I feel a little better today and I walked home from my echo appointment - which is about a mile and half with a steep hill to go up. I just felt like I needed to move and it was a nice day so I did it.
Hoping I will stay alert till 11 pm and sleep my normal 8 or 9 hours tonight.
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I just thought I would share this here in the Stage IV forum, it was posted earlier by someone else in the Her2+ thread outside stage IV.
Kelly Clarkson interviews Lily Tartikoff and Dr Dennis Slamons appears at the end and so does Ginger one of the Stage IV ladies from the original Herceptin trials in 1995. Yes 1995.
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Hi all! I am a bit behind on this thread, but wanted to pop in to share something. I'd recently switched from Herceptin (only, no P) infusions (port out!) to injections. I think I have had a total of five at this point. I had noticed, but thought it was my imagination, that the side effects with the injections were considerably worse. Number one, I had the flu like symptoms after EVERY injection, and not just once in a while. They lasted longer. I also had the drippy nose that I have heard everyone talk about but never experienced. My muscles ached and were much more stiff. And....I realize this sounds crazy (not to mention vain) but I was gaining weight... no matter how much I exercised or how little/healthy I ate. SO, this morning I sent a note to my doctor and told her I thought it was time for another little "vacation" from Herceptin as the side effects were stacking up, and just asked her if there was any data supporting injections being more difficult than infusions. She responded that she supported my "vacation" but reminded me it's very unconventional, and then said that no real clinical data to support what I am seeing but that YES. she did have several patients that have switched back to infusions because they didn't like "the way the injections made them feel".
Just wondering if anyone else getting injections is experiencing the same thing? They are so much easier and faster...… but I am wondering about going back.
I forgot to ask her about the weight gain but I swear, it's not in my imagination. Minor point compared to everything else, but still frustrating.
XO
Andrea
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Olma : 1995. Really!!!??? Hope springs eternal. Thank you for sharing.
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Andi67, I'm still on the infusions so I can't comment on the injection part, but the gaining weight is so frustrating! I work out 5 times a week and watch what I eat and all I can say is the gaining weight has stopped but I'm not losing anything. If I stop for even a day, BAM! Gain a pound. It's infuriating.
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After having had a longer break between 2 infusions and recovered very well I was hoping it won’t Happen that fast again. After my last P infusion and H shot I started to have again side effects like very strong neuropathy, edema in my whole body even in my face and a very mean rash in the face and on my body. Agreed with my doctor that if scans in July are ned to take out Perjeta for a while and just stick with Herceptin. Apart from that the pressure the edema causes around my head scares me because it makes me e feel as if my head bursts although up there all is fine apart from a necrosis we treat with dexamethasone. Has anybody any other advise to work against those side effects rather than stopping antibodies? A premedication? Certain foods? Workouts?
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I’ve been on H P for 4.5 years now. I’ve got autoimmune arthritis for the second time. 3.5 years ago I got to the stage I could barely get out of bed due to pain and stiffness, so i was started on prednisone 20mg, WOW I started feeling better after 2 days. But it took me 10 months to get off it and some of my underlying osteoarthritis returned, oh well.
For the last year the pain and stiffness has been dreadful, my feet and ankles were so painful, walking was very difficult. My new MO kept changing my oestrogen blockers to see which was the least disruptive. Eventually I was sent to a rheumatologist who said autoimmune disease from this immunotherapy again. Started me on prednisone 10mg with an anti-inflammatory. Now I’m down to 7.5mg prednisone and just started on Plaquenil 200mg (the drug Donald Trump is telling everyone to take). I’ve recommenced exemestane and some pain and stiffness has returned but still much better.I’m just letting u all know that if ur on HP and an AI or Tamoxifen the pain and stiffness u experience may be autoimmune, not from the oestrogen blockers. If it is bad insist ur inflammatory markers are checked, I wish I’d done that 12 months ago, my quality of life really has been poor. I rarely went out socially anymore or for walks, which I used to really enjoy. Now that we are confined to home I now CAN’T go out socially! I feel I wasted the last 12 months, and with our disease we don’t know if we will last out the COVID19 restrictions.
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Dear BellaTassie, uh, I am so sorry you are going through this:/ I just wanted to ask if you say your autoimmune arthritis was caused by HP? Thanks a lot, Saulius
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Yes Saulius, autoimmune disease caused by the Perjeta. I’ve moved since first time diagnosed and this Rheumatologist said they r seeing it more often now as immunotherapy is more widely used. The stiffness and pain is worsening, wish I’d stayed on prednisone 10mg like the Rheumo wanted me to but I was terrified of diabetes as I’m obese and pre-diabetic now. He wanted me (after I asked to go lower) to reduce it to 5mg after 2 weeks but I’ve decided to stay on 7.5mg. Need quality of life! But since I read that the Plaquenil causes LOW blood sugar I’m hoping they will cancel each other out! Don’t teleconference with Rheumo for another month, I’ll c what he thinks about this then. Can’t say that the Plaquenil has helped in the slightest yet, but perhaps it needs more time? He wanted me on it for 3 months initially.
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hi there, I haven’t posted here in a long time since I’ve been on a variety of treatments other than HP but I do still get the H without the P along with other infused drugs. I was informed by my MO’s office yesterday that from now on, I will be switched to the Herceptin injection. If this were the only infusion that I were on, I think I’d be thrilled. But, I still have another drug that must be infused on the same three week schedule so I’m still getting my port accessed and sitting through an infusion etc. I was slightly put off that I was told I was being switched rather than have it presented as a recommendation and discussion. Feel like I’m not given a choice though I imagine that if I objected, I could stay with infusions.
So, my question is whether some of you are receiving H injections and the P infusions and if so, what’s been your experience with the shot? Are there pros and cons either way that I should be aware of?
Many thanks in advance. M.
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Hi Margarita
Came across your post and by chance I have had my first Herceptin only injection today. I am on HP but because of Coronavirus I have dropped P just now.
The injection took about 3-4 mins and was just mildly uncomfortable. It was amazing for me. In and out the hospital in under one hour.
Liz
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Liz, thanks for your reply. I’m relieved to hear that it was only “mildly uncomfortable” - we’re pretty good at handling that by now aren’t we?! Was the shot given in your thigh? I was told that’s the usual place. I guess maybe this is new Coronavirus-era standard of care because they did say that it would be good to reduce the amount of time I spend in the hospital each visit by getting the shot rather than the infusion. Wish I could drop my other infusion drug for awhile but I’d be afraid to since I previously progressed when I was on just the HP. Cheers! M.
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