HERCEPTIN and/or PERJETA Threads
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Olma61, I forgot about that,dang it.
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BigPeaches - I know, right!?!?
Andi67 - YES, I also read that women in Europe were being taught to inject Herceptin themselves at home. That would be fabulous! I would totally do that.
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Hi all
Interesting discussions of late. Here in the UK Herceptin can be given as an injection. The womenhave it in the thigh. They come and go very quickly but I've heard it is painful. I have HP intravenous but my veins are getting very tired. I just put off having a port. Really dont want one.
If I could have Perjeta in pill or injection form I would be elated. Soon, hopefully.
Andi I am still in awe of your treatment breaks. For now It is the Letrozole that I would like a break from. It has caused osteoarthritis in the knees. Does anyone else have this? I suppose I'm stuck with it? Not just a case of stopping the pill and normality resuming. Damage been done.
L x
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JackBoo - I know what you mean about the port. I don't know if you saw my dilemma posts last week, but I was considering having mine removed. For some reason, I am just so tired of it and very self conscious lately and I don't know why. I was all set to have it out - my oncologist was supportive - and then I backed out the morning of. I will say - it is very convenient. So easy to have blood drawn and infusions, never painful, never a problem. I am very grateful to have had the Herceptin vacations. They have made such a difference -really given me my strength back - physically and emotionally. But, if I had had a progression during one of those breaks I would have completely freaked out and never forgiven myself. I don't have to take AI's but I do have permanent arthritis in my shoulders as a side effect of chemo... very painful.
I hadn't heard that the Herceptin injections were painful! Sometimes my oncologist definitely withholds information, I think! But I would give myself one in a heartbeat - painful or not - if I could avoid the trek to the hospital.
XO
Andrea
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I am on Herceptin and Perjeta. May have to take a break from Herceptin. Had a borderline echo in January had a great one in April 75%, and then a borderline one again in July. Oncsays I have to repeat Echo in August. I’ve only been on it 1 year. Diagnosis right off the bat Stage 4 but NED now. Scared to go off the drugs. Will ask about the shot and the clinical trial. I also get terrible leg and back cramps. Had almost completely got over neuropathy of Taxol and then it cam roaring back after a long plane flight and week in Rome.
Would love to hear if anyone has found something that works on the leg cramps.
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Again it's been a long time and it's nice to read about everyone who's been here and always sad to read about those who've joined because frankly I wish no one ever got this. Anyway, I have good news to share. I recently decided to go off Perjeta after 5 1/2 years. I'm fed up with leg cramps much like those Andrea describes plus digestive problems and while it may or may not be Perjeta I thought I'd take a break and see.
Once I got my MOs agreement about doing Herceptin only I looked into subcutaneous Herceptin Hylecta and asked about it. First I was told that the pharmacology group would have to approve it and that would take months. But, 3 weeks ago at my last infusion I asked my nurse about it and she got intrigued and contacted the drug rep. Voila! On Friday it was approved and by Monday they injected it into my thigh (no pain, no reaction) and gave me an appointment to REMOVE MY PORT!!!!!! I'm not backing out! I still (so far) have to go to the cancer center for the injection but I'm thrilled to have an option to the ugly port.
Now if they'd only come up with subcutaneous perjeta.
~Miche
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Miche, wow thanks for posting. Delighted to see that you are doing well and that you are now having the sub injection. I feel this could well be in my future ( hopefully) but I am only 27 months on from starting the HP regime. A hard decision to make.
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Miche - that is WONDERFUL news! I am so excited for you, and for the rest of us. I am going to ask at my next infusion and my next onc appointment! Thank you so much for sharing that. And - I think I have mentioned that I haven't been on Perjeta for almost 6 years...…. we took it out of the regime almost immediately because the side effects were so bad. I'm interested to see if you leg cramps get better....I certainly hope they do, but I don't know what to do about mine. I just try to stay as hydrated as possible - it's the only thing that helps. Anyway, YAY!!!! Congrats on getting the port out!
XO
Andrea
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I am considering requesting to come off Perjeta. I had to be given an infusion holiday due to extreme fatigue. It was so bad I really could not get out. I am enjoying the feeling of what seems like my normal strength and stamina. I will be sad to be put back on drugs to be honest. I would ask her if the Perjeta is giving me that much of an edge over just Herceptin but I have been NED since 2015 after my breast surgery from the neck down. Yes it is in my brain but since it does not cross BBB, that is not the fault of the drugs. I would prefer to be on as little as possible as quality of life is important. I am on my own and part of my quality of life is looking after myself, not nurses or various family members. I want to have the energy to walk to the grocery store if I want to without being afraid I'll get stuck on the way home. I do workout with a treadmill and weights as well as use a step bench to represent stair climbing and eat a lot. I go back on August 14th so have time to think about it.
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I have just had a bone biopsy after 1 1/2 years on Herceptin. (My initial diagnosis in 2005 showed Er+Pr+Her+. I did 12 months of Herceptin. Followed by 6 years of arimidex, aromasin.). That did not change. I will be starting Herceptin,Perjeta and Taxotere this month since progression in my femur ,pelvis and thoracic spine. So I spent last night reading many of your posts. It made me feel little better about the possibilities of this treatment . I just finished rads on my femur and pelvis. I’m fearful of the side effects but I will have the loading does of P&J first then 3 weeks later I will start Taxotere. So I would appreciate any tips you have. I did ok on taxol but I think Taxotere may be tougher. Hoping for QoL.
Mair
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Maire67, It's doable, keep Kaopectate close by (projeta causes diarrhea), the worse part for me was the bad taste in my mouth, it took a while to find something that didn't taste disgusting. Get plenty of rest.
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ladies , can you please enlighten me on taxotere versus taxol in this combo and to which extent they are helping us - oncologist said on it's own a chemo drug gets only a few months survival so I am not sure how important it is for us.
I am pondering what treatment to start and would not want to make a hasty wrong choice. I was diagnosed with metastasis in my lungs a month ago.
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Anotherone, if I recall correctly, Taxotere did a bit better than Taxol in clinical trials using a taxane (the drug class/type) with Herceptin and Perjeta. I think taxotere is the standard protocol and 1st choice of taxane. Taxol (a cousin drug) is often used if you can’t tolerate taxotere, which was the case for me. Abraxane (because I couldn’t handle taxol either) is the 3rd and least used taxane as a first line treatment. It’s delivered using human protein instead of a chemical, which makes it expensive.
I’m not sure what choices you’ll have but in the US, the standard is taxotere or taxol plus H&P, after 5-6 months, if response is good, the taxane is dropped and you continue the H&P for as long as possible.
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yeah I am in the UK, on the NHS they offered taxotere. I have booked another appointment privately and will check what my insurance will cover. I take it it would be preferable to do Abraxane first line in an ideal world.
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I may even consider self funding abraxane if it transpires it is better . As far as i understand if tumour is resistant to one taxane it will be resistant to others as well so it's not like I am going to be cutting my treatment lines.
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Anotherone, abraxane is not proven to be the best working taxane overall but it is an option for those of us who’ve had adverse reactions. Reactions are rare though, only about 2% have issues severe enough to discontinue the drug and having a similar reaction to taxol as an alternative is even more unlikely. My situation was so uncommon, it actually stumped my MO briefly and I go to MD Anderson where they’re seen it all or so I thought.
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I think the logic of combining the chemo with H&P is that not all cells will have HER2 receptors even if we are strongly HER2 positive so the chemo serves to blast all rapidly dividing cells while the targeted therapies do their thing against those wit HER 2 receptors.
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Thanks Big Peaches. Good to hear it’s doable. I think finding out Taxotere is only for 6 months, if that , has made me feel I can do it. Kaopect shopping this weekend.
Illimae , also good to hear that info about Taxanes. I’ve been very lucky for all these years. Just happy there are more options than 14 years ago.
Maire
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Hi everyone, I had a HP on Wed and experienced heart palpitations during the H infusion. My blood pressure was also a low ( before treatment began)
The palpitations were bad on Wed and Thur night; less so during the day. I have to be careful about standing up too quickly as this triggers it.
I was also shocked to learn that my cholesterol is high so am now trying to drop some weight and will have a repeat blood test ( a starving one) in 8 weeks time.
My last echo was 1st July and 63. Recently been on holiday and felt fine, but not feeling great now. Could be anxiety related of course.
Any insight would be appreciated.
Liz
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Good afternoon everyone,
It’s been a very long time since I have posted on this sight but have been on since first diagnosed 6/2015 and am now MBC as of 8/2017...I had TCHP and then herceptin perjeta since then and have been NEAD until last month and T11 lit up. I will have radiation to this area and still continue on H&P and hope there is no further progression. Can anyone else share if they have continued with same treatment after small progression and have been successful on keeping the cancer abay. My second choice is to change regimen and start to possibly windle away the opinion. Thanks for any feed back.
Jackboo09;
Best with your Heart so you may continue your journey
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Hi motherofmany,
Sorry to hear about your progression and hope someone will post with some ideas. My update is that I am feeling better. The heart palpitations are less frequent but still coming sporadically, more so at night. I got checked out today and my BP, pulse and an ECG were all normal. ????
Liz
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Liz I'm glad to hear that you are feeling better and vitals are all normal now. Your symptoms sounded like an infusion reaction, except you said that your blood pressure was low before the infusion? I have no insight to share. I'm sorry it happened and hope it was a once-off thing.
Motherofmany - so far my MO has preferred to add short-term chemo or use local treatment every time I have progression because there is concern that I will burn through my options too quickly if I were to change treatment every time. He says it's also to maintain my quality of life, since H&P is fairly easy to tolerate and everything else down the line is going to be harder on me. I'm not even two years into this but so far the strategy has worked out okay, although I do expect that I'll probably be moving on to Kadcyla next time (which is really just Herceptin plus a chemo). I'm not looking forward to moving on to straight chemo for life, and I'm grateful to be able to enjoy the times when I am only on H&P. I've read the stories of many women who in hindsight regretted changing treatment as soon as there was any sign of progression because they burned through all of their options so quickly. But my situation is a little different than yours since I have never have been and likely never will be NED.
This is just my personal opinion based on my own experience, but if you only have one bone met that can be handled with radiation while allowing you to stay on H&P and you are otherwise NED, I would wholeheartedly support that approach, especially if that is your MO's recommendation. Although it is scary to have any progression, one bone met isn't life-threatening the way mets in the organs can be. I'm sure you'll be closely monitored for any further progression. If you develop additional mets after rads, then you might be showing signs of becoming to resistant to Herceptin and can start thinking if it's time to move on to the next treatment line, but at least it will have bought you more time on a treatment that is fairly easy to tolerate.
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motherofmany - I am in a similar situation to yours and my MO chose the same course of action. Radiation to the single active met since current treatment appears to be keeping everything else under control. I only just finished my radiation the beginning of June and have not had my scan yet, so I can't tell you how successful it will be, but know that we did choose the same course of action. And the reasoning behind it is as LoriCA describes - don't "use up" systemic treatments that might be needed later on for bigger issues, when this one area can be treated locally.
Hoping this method returns us both to NED for a good long while!
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just gone through the whole 70 odd pages - taken me a few days. Thank you ladies for useful info.
My heart aches for so many participants including the one who started the thread that do not participating on this boards anymore.
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Liz, It was a hard decision to make to go off Perjeta but after 5.5 years I hope Herceptin will continue to keep the HER2 overexpression at bay. My MO is taking tumor markers every time I go in now and I had a scan before I went off Perjeta. Still, it's a bit scary but I am feeling better--more energy and fewer leg cramps and my digestion is better. I had gone to a gastroenterologist who put me on a FODMAP diet which is terribly boring. That didn't last long even though I felt better. Going off the Perjeta has allowed me to eat normally. If my tumor markers change (they haven't in 5 years) I can get Perjeta in my arm. About cholesterol: there is a correlation between high LDL and heart disease but high HDL is good. You can't easily diet your way to low LDL-- but statins can lower LDL. If one statin bothers you another might work with few SEs (this last if from my memory of what my heart surgeon sweetheart says).
The port: It is so nice not to have the big lump below my collar bone and especially not to have it irritated by the seatbelt. Also I can wear a sun dress.
Anotherone: Taxotere, Perjeta, Herceptin seems to be the most effective treatment for HER2+. I used penguin cold caps and didn't loose my hair. And the steroids really helped with side effects. The standard is 6 treatments 3 weeks apart so closer to 4.5 doable months on taxotere. Then it's H&P forever or so. For me it wasn't so bad until the last 2 taxotere treatments and I had a good response so 5.5 years later I'm alive and pretty well. Not bad for someone with liver mets. The side effects from H&P crept up and got worse over time--mostly leg cramps and digestive issues. The worst thing is the psychological trauma. The uncertainty. The dread.
Everyone else: I think of you often and just hope you respond well to treatment. What a effing shithole this condition is. I am eternally grateful for those who post to this site and to those who treat us and to those who try to find the answers and a cure. It all just makes me weep.
Miche
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People who have been on Herceptin and Prejeta for a long time, how have your tumor markers varied?
I had a great response to THP which got my levels back to normal for both 15-3 and 27.29 but I just wanted to know what type of variability is normal at this point. My latest markers had a rise of 6 in the 27.29 number (but still well below the cutoff) while at the same time my 15-3 number went down by one. Is this a concern or more likely normal variability?
Thanks!
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So here in Ontario, since government is paying for my HP, it turns out I cannot simply drop perjeta without being moved to another line of treatment that would include chemo should I progress.
I have decided to see if I can do Herceptin every 3 weeks and just do Perjeta every six in the hopes of satisfying the government as I am not planning to do another systemic chemo again. They won't let me just have herceptin since they had to approve HP.
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LA212 - It will be 2 years on H&P for me in October. My tumor markers (CEA and CA 15-3) have been in normal range since before I started treatment and never gone above, but I have noticed small rises (very small) depending on what is going on with me.
My MO does not consider those results indicative of anything. Supposedly the tumor markers are not accurate for me, but she continues to take them every six weeks. I guess if they go way up high, that will mean something is going wrong.
But, like I said, I have seen slight rises that correlate with certain events - when I was on Taxol (which can be from dying tumors) CA 15-3 was at the top of normal range and also saw a rise before my last scan when some activity was discovered in my L1 met which had been "quiet" on my previous scan. Any inflammation or infection can effect the results, too.
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LA212 - I have been on Herceptin for almost 7 years. My tumor markers have gone up slightly once in a while, but much above the normal range.... maybe 5-6 points. I think it does have to do with whatever else is going on in your body, as opposed to anything cancer related. I only get mine checked once a quarter now.
And.....saw my oncologist today and I am going to start getting the Herceptin shots! I am SO excited. I'll have my first shot in Sept and then another in October and if that goes well - no weird side effects or anything, I will get my port out. I asked her about the pill form - she said she didn't know when, but someday.
XO
Andi
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congratulations, Andi.
That is amazing, just amazing-I have not other words.
Posts like yours will give hope to countless newly diagnosed lurkers; they can make a difference in so many people's lives I am welling up as I am typing it .
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