HERCEPTIN and/or PERJETA Threads
Comments
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My onco mentioned coming off HP as a possibility in the future, but by that he meant after 5 years of tx or more following a stage 4 diagnosis.
I will be interested to hearif anyone else has come off this maintenance treatment at any point in their stage 4 journey.
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I can't imagine an oncologist recommending stopping treatment at Stage IV. I've only heard of a few folks stopping treatment after they've been on the same treatment for many, many years and nothing progressed--one woman I met stopped after 15 years, I think. I am on my 4th line of treatment in 7 years and am hoping more targeted treatments come out so I can many more years.
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To be a little clearer, my onco has never made the recommendation to cease treatment. He did however talk about one of his patients who is 13 years out and just on Herceptin and that he has heard about patients ( Her 2) who agree treatment suspension with their oncologist, thus beginning a kind of watch and waiting process. I am still a relative newbie at stage 4 as I was only dx in March 2017. I would feel very nervous about stopping tx. I merely mentioned this as it does/ has happened for some patients. Unfortunately the reality for most stage 4 patients is some form of tx forever.
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peaches, I would not want to stop h & p after 1 year. I did stop treatment after being Ned for 4 years. I have been on no treatment now for 4 years and still Ned. Hopefully your new onc will have different thoughts about continuing treatments.
Lauri
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hello all
Just started taxol, herceptin and perjeta. First round done yesterday.
I was dx stage 4 June 2017 and MO started me on ibrance and letrozole as full path report with her2+ Was not in yet.
I stayed on course on this protocol until last month when ct found progression. My cancer is sternum, ribs and mediastinal area. The progression is in hilar nodes and mediastinum. Thus the Change to first line HER2+ being taxol, herceptin and perjeta.
I am terrified this treatment will fail me.
My sternum is quite protruded. No shrinkage at all on ibrance and letrozole but I was stable for 16 months.
Anyone with same issues can you advise is there anyway I can tell if the treatment is working even a little prior to the 3 month scan. Will I see shrinkage I the sternum area perhaps
Thank u for your time
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Hi Lauri
Great to hear that you continue to do well and that you have stopped treatment. I am due a HP on Fri 4th Jan. This cycle will be delayed one week as a Christmas break ( I didn’t want a tx prior to my sister’s New Year’s Eve party!)
My issue currently is an increase in hand and feet neuropathy. Yesterday I dropped a cup and my hands feel numb and my grip is compromised: a definite increase in symptoms. What might happen now? Could my dose be reduced?
Hopefulgirl- the HP with a taxane chemo has shown good results so you have every chance of achieving a reduction.
Liz
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Liz,
Before I stopped treatment completely, I started spreading doses out because of increasing side effects. The last year of treatment I only did 4 or 5 doses the whole year
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Liz, I started treatment in 2014 with taxotere, h and p. Less than a year later dropped everything but herceptin. Reason for dropping the p was because of neuropathy and it helped alleviate some of those symptoms. I've discussed with my doc stopping herceptin but she says if a scan would show cancer anywhere I would have to start the entire protocol over. Hardly seems necessary to me, but I'm not the doc. If I could have her guarantee that if something showed during scans and I could restart with herceptin only, I would do it. Usually the conversation with her ends in offering a herceptin break. Which I take. But man, I'm hopeful that one day soon, there is data or research to back up stopping altogether
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Hopefulgirl the first time I did taxol I had an almost immediate response as far as tumor shrinkage. We didn't need a scan to know that it was working. It depends on where your tumor is of course, in the bones the only way to know is if symptoms (pain) lessen, but if you have a palpable tumor or the tumor in your mediastinum is large enough that it's pushing your sternum out, you should be able to tell that it's working well before your scan. Wishing you a good fast response to the new treatment.
Strangely enough H&P resolved my liver and skeletal mets but didn't work so well on other parts of me (including new mets & primary reoccurence), so I'm back on taxol with H&P for now (although I have a feeling that's going to change next week as the taxol doesn't appear to be working this time). I'm icing my feet this time to hopefully prevent an increase in neuropathy that didn't show up until two months after I finished taxol the first time and continued to get worse for several months. H&P isn't supposed to cause neuropathy, my MO said it's a delayed response to the taxol.
If someone achieves NEAD and maintains it for several years I guess I can see wanting to discontinue Herceptin. Not sure I'd have the guts to quit it if I ever manage to get there. Maybe if you had a slow-growing cancer or only had a small number of mets/bone-only that didn't cause severe symptoms since oligometastatic is considered curable to some degree, but if you had extensive mets including organs that caused severe symptoms and a high Ki67, it would be hard for me to shake the feeling that Herceptin is the only thing keeping it at bay.
Happy New Year everyone!
Lori
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Lori,
Herceptin definitely causes neuropathy. Years after having chemo, my neuropathy got progressively worse and the only med I was on was herceptin. My dr didn’t believe it at first either, but once I took a break and the neuropathy started improving, he finally admitted it had to be from the herceptin.
Lauri
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Lauri it is so frustrating when doctors refuse to admit that something is a side effect of the drug. If the SE didn't show up during the clinical trial, everyone refuses to acknowledge that there could be additional SEs even though reported by a large percentage of users once a drug is in wide use for a number of years. There should be a better way for reported SEs to be officially acknowledged and tracked so they can be incorporated into the official data sheet for the drug as a possible side effect when reported by enough people.
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Happy New year Lori, good to hear from you. Laurish- thanks for that further info. I called today to report my worsening neuropathy but unfortunately my doctor is on leave. Another MO will consider what to do now on Fri so I just have to wait until tomorrow.
I would dearly love to finish but I am only at the 2 year point in March and I don’t think it will be recommended. I am on the Cleopatra trial and only get Perjeta through the cancer drug fund. This is reserved funding that is separate to NHS and do would i ever get it back if I stopped?
L
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Happy New Year to you Liz! Are you taking anything for the neuropathy? I take gabapentin, it does give me some relief but my problem is burning (my feet feel like they are on fire) not numbness so much. Had to increase my dosage in July, and I think I'm going to have to increase it again soon. I also get severe intercostal spasms and cramping in my hands, feet, legs (not calves, along achilles tendon and down the length of my shins) that seem to be neuropathy-related since I've been on Herceptin and nothing has helped with that so far.
Glad to know that it's not just me with Herceptin causing neuropathy. I had no problem at all with taxol, which is known to cause serious neuropathy, and I didn't ice the first time either, so it's weird that Herceptin causes it. I wonder if icing hands/feet to prevent neuropathy would work with Herceptin the same way it is supposed to with taxol?
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I am delaying my next HP ( due Fri 4Jan) so that I can meet with my onco on 10th Jan and discuss the increase in neuropathy.
I won’t have to have the loading dose as long as I have tx by 18th Jan.
I don’t know if I am over reacting. It is hard to judge whether the tingling and burning is intermittent and anyone can drop a mug. I’m not even 2 years out yet until March.
Dr may encourage me to stay on usual dose or recommend a reduced dose. Not an easy one.
Wish it would all just go away. Still I have a day to do as I please tomorrow instead of the treatment.
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Has anyone here used the Genentech copay assistance program? I would appreciate any information on how it worked.
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Regarding side effects, I’m now on Herceptin and Perjeta only and have been NED for 20 months now. I manage my side effects, drippy nose with Herceptin and itchy/diarrhea with Perjeta by reminding myself that I can live with the side effects but not cancer. I will drop Perjeta one day...maybe after 6 years. I just do not want the cancer to mutate and come back and become more difficult to treat. Dying of breast cancer (which is likely despite oligometastatic disease and NED) would be likely way more painful. Scary future. Sigh...
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Hi Bstein
I agree that the SE's are manageable, with the exception of neuropathy which will have a big impact on my life. I feel nervous about this current treatment delay, however it also makes sense to speak to my oncologist next week and see what he suggests.
You are doing really well. I am a bit vague on dates. I know March 14 2019 will be 2 years since my dx and I think I got to NED Easter 2018 Will have to go back and check.
There is no way of knowing about the path this disease will take so I try to just get on with life, difficult thoughwhen curve balls like this one crop up.
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bstein,
Sometimes the side effects get so bad, you really don't have a choice, my neuropathy was moving into my legs and my onc was afraid it would get so bad I couldn't walk. I was also dropping things all the time and the pain in my hands was becoming unbearable. I tried spreading out doses, but after awhile that didn't help. I have been off for 4 years and unfortunately, most of the neuropathy is permanent. I was also like you and never thought I would quit. For the first 2 years, all I had was a runny nose. It was going into the third year that the side effects started increasing. ( I know this isn’t for everyone as their are women who make it 15 - 20 years
I am thrilled that I have been so lucky to remain Ned so long, but I wish I would have stopped sooner. ( I think if I was older and my kids were grown, I would have. But my kids were 8, 11 and 12 and I felt like I had to stay on herceptin as long as I could.). The good news is that they are now 16, 19 and 20 and I am still here
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Hi twiggyOR, I use the Genentech copay assistance program and I'm so incredibly grateful for it. There is no income limitation, and you have to apply for each drug, one application for Herceptin and another for Perjeta, and you have to reapply every year. I filled out the application online while getting my first infusion and received my approval and card instantly on line, gave the number on the card to the girl who handles the insurance at my infusion center and never had to worry about it again. If like me you have a 20% co-pay on those drugs (standard silver plan), after your insurance pays the 80% your doctor's office should submit the balance directly to Genentech and you never see a bill, just a letter from Genentech informing you how much they paid. They pay up to $25,000 per year, per drug but if you have a standard insurance plan you won't use nearly that much because once your deductible/OOP max is satisfied you are no longer responsible for the 20% copay. Time things right at the beginning of the year and you can get most of your deductible covered with the copay assistance. I hit my out-of-pocket max at the end of March last year and didn't have to pay another dime for anything for the rest of the year.
Let me know if you have any other questions about how it works.
Lori
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twiggyOR, to update some of what I said because I just got off the phone with Genentech. I kept getting an error message when I tried to re-enroll before my next infusion. A new vendor has taken over handling the co-pay program. H&P can be applied for together with one application now, and re-enrollment is automatic now, no need to submit a new application every year. The yearly dollar amount is from enrollment date, not calendar year.
Anyone who was using this program last year - new member numbers and RxBin numbers have been assigned to everyone.
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LoriCA,
Thanks for the information!
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Hi everyone
I am just reporting back after an appointment today with my onco. I have temporarily suspended HP after reporting a slight increase in neuropathy symptoms. As I am still stage 1 for neuropathy he would like me to resume. I've just had bloods taken today to see if I have any vitamin deficiency or thyroid issues that may be contributing to the nerve damage, however he does think that Perjeta is the likely cause.
At some point I may drop the Perjeta if these symptoms start to interfere with everyday life. For me this could mean that I remain on Herceptin only. Some folks are just on H and still doing well.
He told me that 4 years is the longest time he has had someone on Perjeta. I scan in March atmy 2 year post dx point.
The break from HP has been nice!
Liz
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Good news today is that Perjeta has been approved by the NHS for patients in Scotland.
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Hi Liz. I dropped Perjeta almost immediately because of the neuropathy issues. That was about six years ago... I have been on only H since then and NED the whole time. I do notice an increase in neuropathy after having my infusions....and like Laureish, I have started to spread them out. I go about once every six weeks - 2 months, and sometimes I take longer "vacations" and I do notice that I feel way better. I'll probably never stop taking H altogether since it's working and relatively easy. My oncologist has promised me that "soon" we will have access to it in pill form..... I cannot wait for that day!
XO
Andrea
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Andi67, pill form would be fantastic! Going for infusions every 3 weeks is taxing.
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do they treat HER2 A+ with AL’s
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Hi Andi
Yes a pill would be a dream! Interesting to see that you dropped Perjeta and you are doing really well. I see that you are also estrogen positive like me. Your story gives me hope!
I have HP on Fri after a 6 week break- egghh
Liz
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Andi and Liz,
Question, after a break or not every three week infusion of herceptin, do they make you do a loading dose? I've had a few breaks and every time I have been required to restart with a loading dose.
Diane
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Hawkeye, I postponed an H&P infusion for an additional week due to vacation and was able to have my regular dose (4 weeks after the last), however, my MO’s nurse said anything longer than 4 weeks and I’d need the loading dose again.
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Diane - interesting question. I have been getting Herceptin sporadically for 5 years, and until very recently I was never required or asked to do a "loading dose"... even after it had been 5 or more months (that one Herceptin vacation!) The last two times I have gone, I have run into issues with that. When I went in October they did make me do a loading dose over 90 minutes.... I insisted that I didn't need it, but they said something had changed in their protocol. Then I went in December, and same thing... they wanted me to do a loading dose but called my oncologist and she said that I was good with the regular dose. She has now put a note in my chart indicating normal dose only. She said she has other patients who are running into the same issue... she didn't elaborate on what changed, but I am planning to ask at my next appointment in February.
XO
Andrea
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