HERCEPTIN and/or PERJETA Threads
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a question to you ladies - anyone you became breathless on H&P?
I stopped abraxane in February and I swear my breathlessness has increased in the last few months ..
I am a very fit 47 y.o. otherwise, was diagnosed precisely due to atypical breathlessness and cough exactly a year ago ...
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sorry anotherone, no breathlessness for me to date. It’s a worrisome symptom. Mention to MO ASAP. good luck.
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was hoping someone could help me out with my June 17th post. Here it is again.
Jun 17, 2020 03:23PM Hopefulgirl wrote:
Hello met sisters
I am currently on herceptin and perjeta and am stable, however, my MO called today about my echo. My EF is declining each echo. I am now at 45. I started at 58 I think. Anyhow she is stopping my treatment and sending me to cardiologist to see if I should be put on "heart protection medication".
She is hoping that taking me off one or two treatments my EF will come back up. Has anyone been down this road?
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this has not happened to me but I know folks who had to stop for a bit and their hearts did recover. I began working with a cardiologist in case this happened.
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I think breathlessness may be a sign of cancer progression, heart issues , menopause (I had chemo ending in February and no periods after ) , delayed covid sequelae. May be even side effect of H&P? Psychological ? Although my heart rate shooting up from 60 to 90 after one flight of stairs or moving at all ( fit in general) is quite an objective indicator for it to be psychological...
Spent a day at a&e , had ecg , lung xray and blood tests done - they said nothing new on lung xray and all other results are normal. Feeling silly for doing it but did not want to stupidly miss anything like pulmonary embolism etc.
Will have scans on Monday , results on Wednesday- shall update. At least for 3 nights I could sleep normally as 6 previous nights I could not fall asleep for a while feeling breathless...
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Cross-posting and curious if anyone has heard from Andi67?
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Dear Bliss, I checked and Andi was here on April 26th, feeling just fine and being NED, so I believe she is doing perfectly fine, probably out of forums for a while. But I guess you need to ask her something particular, that is why you wrote. Saulius
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Good news: https://www.fda.gov/drugs/drug-approvals-and-datab...
Although we still have to wait until it all comes to Europe...
Saulius
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woooo-hoooo thanks for posting the good newsSaulius
Hope my center gets it soon!
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hi hopefulgirl, I had exactly what you described while on H&P. My cardio efficiency declined over the first year to two that I had HP - I had them with Taxol initially and then without. After progression, I switched from HP to Kadcyla and also started on Lisinipril (ACE inhibitor) since Kadcyla also can cause cardiac issues. Nonetheless, my cardiac function recovered - I was around 50 years old at the time with no prior heart problems. My MO and cardiologist said that heart issues are very common with Herceptin and similar drugs targeting HER2+ cancers but patients usually improve when taken off the drug for awhile and/or when heart meds are added. Obviously, it’s a delicate balance to both treat the cancer but protect the heart. In my case, I’ve since switched treatments again to immunotherapy and now am back on Herceptin. Have stayed on the heart meds the whole time and heart function improved some and is stable. Bottom line, don’t panic - heart function can improve but it does need to be monitored.
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Hi ladies. Anyone occasionally experience flu-like symptoms after their infusion? Normally my infusion days are a breeze, but I've been feeling miserable after my infusion yesterday...fever and chills all night, headache, and overall just blah. This is not my normal. Wondering if this is just a weird response to my infusion or if I caught a bug and my infusion made my immune response even worse???
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mommyerin. When do the chills start? Do you have a heart rate monitor on a fitness tracker you wear. Does your heart rate go up too. I started having chills and increased heart rate after my Kadcyla infusion. It was the start of an allergic reaction. I'm on h and p now and they slowed down my infusion time and give me benadryl and Tylenol before to prevent allergic reaction. Definitely tell your doctor about this. They have ways to handle it. Susan
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gone girl: thanks for your response. My infusion was in the morning and I started to get a headache in the afternoon. Chills started in the evening and fever/chills overnight. It definitely felt more like I was “coming down with something" as opposed to an immediate reaction to the meds. I felt fine during my infusion and for a few hours after. I’ll definitely talk to my MO about it though
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Anotherone
— in the third week of August 2016, sudden onset of extreme breathlessness was one of my first symptoms; With it came unexplained weight loss ... 25 lbs in three months. First week of November sudden appearance of a large lump which wasn't there when I had ob-gyn annual first week of October. IDC diagnosed second week of November.
Despite quarterly cardiology visits and every test imaginable, for two years my extreme breathlessness continued and went unexplained. One day in August 2018, when I'm having an especially difficult time breathing at my quarterly visit, my cardiologist walks in and asks, “do you have breathing problems, asthma?" “Yes, for two years you've been part of the team trying to find the cause." “Oh, well, two of the blood pressure medicines I have you on aren't good for folks with breathing problems.
My BP medicines were changed that day. Three days later my breathlessness was gone. He had changed the medicines in the third week of August 2016. I fired him.
The BP medicines were carvedilol and nifedipine.
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I was supposed to have my first H/P only infusion last Monday but my onc cancelled it. I’ve been coughing since February. It’s a dry cough, mostly non productive. I’ve had prescription strength nasal spray, codeine cough syrup, Tessalon perles, all with no change in the cough.
My most recent CT showed ground glass opacity in both lungs and it's worsening. There are also a few spots of pleural effusion.
My oncologist put me on strong antibiotics For 10 days to rule out pneumonia or another infection. Today is day 7 and there’s no change in my cough. I’ll have a chest xray on Tuesday. Both the radiologist and my oncologist think I may have pulmonary drug toxicity due to chemo. Both taxotere and Herceptin have cough listed as a side effect.
Soooo, let’s say it’s Herceptin causing the cough. What are the alternatives? I had a great response to Taxotere, H/P and I hate to think of standing still after going through chemo.
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ByHisGrace , good you had it sorted- unbelievable it has taken 2 years.
My breathlessness is not at all times and I take only COC protocol and supplements with H&P - I may still dig up their side effects although Insuspect it may be H&P themselves 🙄
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Hi Saulius. Thanks for replying about Andi67. I saw her last post where she was recovering, but I'm kind of worried about her and hoping she hasn't had a change for the worse. I've messaged her several times, but no answer. I'm surprised she hasn't "been seen" at all, but maybe she's taking a long break, I know she has before.
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Dear Bliss, I checked, seems Andi67 had issues not related to C and she'll recover. She has been one of the best HP responders for past many years, so I hope she does fine and takes a break to live her life. Uhhh, isn't this what we all dream of - to live our life without these forums (I mean nothing bad)... Saulius
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MNSusan When I was on taxol I had toxicity from it. I had the same symptoms as you. Antibiotics didn’t help. I finally ended up in emergency room with low oxygen. I was diagnosed with pneumonitis. I had the same ground glass. I spent 2 weeks in the hospital on steroids. 3 days in intensive care. I don’t want to scare you, but if you get breathing issues, don’t hesitate to go to ER. My dr said it was a rare side effect. I am now on xeloda, herceptin and perjeta. I was diagnosed 12 years ago. I wish you the best and hope your feeling better.
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Reneeswan, thank you so much for your response. It helps to know what to look for. I've been seen by a pulmonologist twice and he believes, as does my oncologist, that it's drug toxicity. You've been able to tolerate Herceptin okay?
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MNSusan Yes, I have tolerated herceptin very well, just nail issues. I have been on perjeta for 6 years, but it has given me neuropathy. I will stay on it as long as I can, but if neuropathy gets any worse, I will have to change treatments.
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Dear MNSusan, my wife had pleural effusion both times after taxotere (12, then 6 cycles) which cleared up slowly in ~6 months as chemo was finished. It is one of common side effects of taxotere. We did not notice any breathing or cough issues though... Saulius
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MNSusan — forgive me for poking in my two cents. My Mom had COPD, not cancer, which started in early stages with a persistent, but non productive cough. Many tests and months later her cough ended up an allergic reaction to corn, especially products with high fructose corn syrup. Eliminated the corn and high fructose corn syrup product from her diet, and her dry cough went away. Drastically improve her quality of life. Best wishes for you.
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Thank you all for your replies. I saw my onc last Thursday. The chest xray showed no improvement in my lungs. Theyactually got worse, so the antibiotics did nothing. The pleural effusions were unchanged. My onc gave me lasix and potassium for a week, moved up my routine echo to tomorrow, repeat cxr on Wednesday, and see her again on Thursday.
I’ve done four days of lasix and I think the cough is getting better. Hoping the echo is okay 🤞. If so, I can begin H/P and they’ll monitor closely. If the echo isn’t good enough, there’ll be appointments with the cardiologist and pulmonologist. I’m really hoping I can get started on H/P. I had a complete response w Taxotere + H/P and really really want to keep it that way.
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Any news on Andi? I haven’t posted for a while. Worried about her and unaware of recovering news.
Liz
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I haven’t seen her post, I really hope she is okay and just living life!
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There is risk of interstitial lung disease on HER2 targeted therapies
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My doc informed me at my last infusion that there is a generic version of Herceptin and my insurance of course wants me to take that now instead. They assured me it is the same exact stuff, BUT my next infustion is going to be an hour and a half because they have to push it slow.
My question is, if its the SAME EXACT stuff, why do I have to have it slower?? Makes me concerned but really, what choice do I have?
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There’s a few bio similars out there, my old center was using Kanjinti. I had a couple of Kanjinti infusions but the timing was the same as the regular Herceptin infusions.
I am at a different cancer center now and back to getting Herceptin.
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I understand the bio similars have the same antibodies but are made in a different way or suspended in a different medium. Therefore you can still have a reaction to the new version. So slow push to start. Hopefully someone else can give more info.
Good to follow up it’s your MO when you can.
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