HERCEPTIN and/or PERJETA Threads
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LoriCa I’m giggling at your astute observation about seeing which direction it goes. Thanks You. Laughter helps and no one but BCOrpeeps quite get it. Taxotere is starting to pattern. One week no go 2 weeks going everywhere. Hoping that you get good results from Kadcyla. See you there in Dec.
I’ve decided to not expect much understanding from friends and family about why I can’t go out to dinner etc Just laugh it off and listen to their problems large and small by phone I’m gradually telling everyone I appreciate texts phone calls etc I will answer when I’m feeling good . The friends who call at 8 am or 9 pm now know I sleep when I can. If I’m up all night in the bathroom I sure don’t feel like taking a walk or going to lunch So I resolve to appreciate the fact that this time I’m retired and don’t have to get to work . I haven’t been bored at all ....lots of people ask me if I’m bored staying close to home. I try not to laugh. My support group once a month is the only place I have to be Other than missing babysitting from my grandkids I am blessed.
Wishing all bone metsters a stable October.
Maire
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my hat off to you ladies who have done it for a while- I had just 3 infusions of abraxane and 2 of h&p and it kicked me . Last Monday it was just h&p so I was expecting a walk in the park but it is not the case ... my taste buds are still off , fatigue is palpable - I walk slowly ; tried to do the run I used to do up until June when we stopped not due to health issues but due to my ex finding a good enough reason to stop for him and me alone having no motivation to do - i could barely put one leg in front of the other second part of the distance. Pooing almost every single time I go for a wee - it must be perjeta kicking my ass as I felt better before the last infusion and during herceptin year first round I felt pretty much normal...
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Anotherone you are still recovering from chemo, don't be hard on yourself. It will take some time. Start out slowly with exercising and build back up. Just curious though, why only 3 infusions of abraxane before switching to just H&P? Did your mets resolve that quickly, or did you come off it for another reason?
You might want to try Immodium (loperamide) to help with the diarrhea from Perjeta. Hopefully the side effects will calm down after a few infusions like they did for me.
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aww that's good to hear it can calm down. I have not stopped abraxane, I had it yesterday ..
My scheme is like 3 weekly h&p and abraxane either 3 on one off or 2 on one off - not sure. Will see oncologist on 22nd and recheck. Yes given up trying to see whether ot would be self resolving , taken 3 loperamides in 24 hours, does not seem to be helping much.
I kind of continued with fitness stuff - it has been reduced not due to SEs but because between 3 days away from home in a week due to treatments ( one day conventional treatment and 2 other vitC and oncothermia) and 1-2 days working and having a child and an elderly parent at home I plain have no time. But I was still going for long fast walks, managed squash once and gym twice in the last 3 weeks - although I could tell I was not exactly myself in all of it it was not so drastic as with running. Have you started Kadcyla yet?
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Okay that makes sense with your scheduling. It's so much easier when they do both on the every-3-week schedule. You're still on chemo (and you have a lot going on your life), so I think you should be proud of yourself just for getting out there and being able to do any running at all. When I was on taxol (basically same thing as abraxane just different suspension) all I could manage was to walk a couple miles. I wasn't up for anything more energetic than that.
I had my first Kadcyla infusion two weeks ago. It was a bit rough for a few days, but even if it hits me that hard every time, I'll still have two weeks of each cycle where I feel pretty good.
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Good luck with it and thank you for kind words, I am proud of myself, I just did not expect so stark deterioration as day to day I feel kind of ok - I guess I forgotten how one should feel when all is fine already ..
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LoriCa Good to hear you have 2 weeks of pretty good. They dropped my Perjeta last time ..I tried it last year and couldn’t tolerate it. This time I lost 10 lbs.
I had 12 days of not so good. 9 days doable. Two Taxotere down and 4 to go before Kadcyla or that is plan.
Anotherone, you are amazing to keep up that exercise and your family. I’m happy I can do a couple of blocks the 2nd week. When my mo says I’m doing fine for my age(70)...that makes me annoyed. I remember 68 fondly when I could walk 3 miles easily. I hope your next round goes easier.
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Maire, I can relate to annoyance at "doing well for age" comment. "I was and would have been very different if it was not for this issue" I think when I hear it. I wish for you to manage to get to the stage of walking a few miles easily ! X
Feeling far better now - loperamide worked and just in a better mood as it is not raining:). I do realise that me complaining is a bit rich as there are so many of us who are in a far more difficult situations to me. I shall try to figure out whether it is perjeta or abraxane that gets me; does not looeramide work for you , maire? I have read the whole thread but it was a while ago so I do not remember who had what issues with this combo .
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Another one, loperamide works for me but too well. I end up with no bowel movement and pain in my lower left side. I have a history of diverticulitis and then I fear that’s starting up. I start again tomorrow wit Her and Taxotere. Maybe Perjeta. I only lost 3 lbs this time around. Maybe third time is a going to be better. Glad to hear it’s working for you. I’ve put a list of questions for the mo tomorrow. Take care.
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good luck with mo and taxotere , indeed trying to adjust dosage of loperamide is fraught with error. You saying you starting H&T now - what were you on before ?
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I w.as just in Herceptin and laetrozole for 2 years after Mets to bone. Stable until May 2019. Then rads to pelvic and femur. Today I’m back on H &P. Trying P again. Plus Taxotere.
Should be an “ interesting week” ahead. I have a hard time getting diagnosis and treatment in my info. Or maybe it’s chemo brain :
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I have been dealing with fecal incontinence. Not a large amount but enough to be annoying. Not diarrhea, just unexpected leaks. Was going to ask to go off Perjeta BUT in Canada, I would not still get Herceptin without the Perjeta. I would be put on something else. I have found the best way to deal with my issue is to take loperamide after every BM. Just prevent it before it happens. It makes me slightly constipated but that is preferable to me than feeling uncomfortable feeling like a leak could come anytime. I also hate wearing Tena underwear since it does not breathe well. Going to keep this up and see what happens.
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maire , I think it is the website - see my signature , I could not get it right either. And it was before chemo as well so brain should have been ok.
Mara , when someone asked me how I was I responded "sh...y, both literary and metaphorically". Hugs. I believe people get round the same issue with H&P combo approval here by skipping P's doses due to either this or that.
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I see the MO on Wednesday of this week. I will fill her in on my worsening SE. I have asked if we can skip some of the doses of P but I was told no, that would not be allowed. We will see. I am under control currently by taking loperamide after any and all BM. I do not wait until I have incontinence, I prevent it before it happens. I am slightly constipated but prefer that to being out of control. Unwilling to fuss with special underwear or pads. We'll see what she says. It's been a few days without an issue for me. My digestive issues are largely managed with a digestive enzyme and probiotic so if it continued this way, I would continue P. If my digestive issues get worse with this infusion, I will simply put a stop to it.
I have felt pretty good the last few days so hopefully it continues. I have always been a person who blows SE way out of proportion. It takes me a while to stop the negative thoughts from overwhelming me. I have control of my symptoms now and hope it will continue.
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Just a quick FYI. My mo wanted to start me on 1/2 dose of Perjeta since I had such problems with it. Insurance said absolutely not because there was no clinical trial. Hospital pharmacist wouldn’t agree either. Just wondering if Ibrance can be adjusted from 125 to 100 to 75. How about perjeta dosage adjustment? So I had the full dose today. I can’t risk constpation because of divertriclar disease. Not exactly at a good point for a bowel resection.
Mara I don’t think we blow things out of proportion. They found I have very low white counts from bone marrow fibrosis I probably had for years. Think cold goes to pneumonia, Lots of complications with minor infections that was just my thing. During my first chemo they did bone marrow biopsy because I kept ending up in the hospital . Quit AC after 3 rd round. Found fibrosis. That was 2005. My docs know Im one strong person I need a lot of ways None of us going through this have any choice in our day to day lives. Docs need to listen better. Mine does. Nurses do.
Keep telling the how this meds affect us and our lives. Hope you keep feeling better. Only one more Taxotere for me. Take care of you.
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I agree Maire. I know my MO would drop perjeta if she could. Until then, I will pretreat myself against the SE. I know my MO listens but is limited by my province's rules.
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Has anybody tried period pads ? We women are used to them , they are unobtrusive and should be effective for small escapes.
Mara , I do not see it as exaggerating- that is an issue affecting QOL very much !
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Sorry you are having a tough time with Perjeta side effects, that's why they call it Poo-jeta. I never had much of a problem with it, but I did develop a bad reaction to taxol after a few months of it so I understand how stressful and emotional it is.
Products for fecal incontinence are designed differently than those for urinary incontinence. I believe Northshore Care only ships to US and Canada, but they will talk to you by phone/chat/email to find the right product that fits properly and will ship several samples for you to try before purchasing. Anything you buy in a drug store probably won't fit properly, and Northshore carries several different products sized for different body types and depending on how active person is (some products are designed to be easier for caregivers, some designed for active people that won't show under clothes, etc), and they will need to know your hip and thigh size for proper fit. I'm sure you could find a similar company in Europe. https://www.northshorecare.com/
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Tx lori. mine is controllable by loperamide, it's just that once it is solved I stop taking it , then it starts slowly again , I think " not too bad will go away " and by the time I can be bothered to take a tablet it is in full swing 😂. It may be from chemo as well..
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I have actually found myself back in control and normal underwear. I started taking loperamide EVERY time I have a bm, even when it is normal. Have not had a problem since. Not really constipated either due to the fiber I guess. I see it like nausea, if we stay ahead of it instead of behind it after an issue, we can avoid it almost altogether.
I am not prepared to lose this drug yet. Seeing MO tomorrow, will still let her know what has happened. If she offers to put me on H only, I would take her up on it but will not insist we stop P since I am not willing to take other drugs.
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Just came back from my visit with MO, we discussed the incontinence issue again at length. She let me know that tomorrow I will only have Herceptin. If I don't have any incontinence, she will stop giving Perjeta and just give me Herceptin. She said that many people live on Herceptin for years and years without the Perjeta. She also said she does not want someone who does not have mets from the neck down having to deal with incontinence. This qualifies as an adverse reaction to the drug and I would be covered. I am happy and relieved. This treatment is much more gentle, losing the other drug doesn't affect my brain since these drugs don't treat the brain, just from neck down.
I am relieved to say the least.
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superb news , mara
Elated for you.
If everything is well I intend to drop perjeta as well, remove the port and have querceptine injections. And live till 90 !😁
That is the programme maximum. The programme minimum is to survive till my daughter is 18.
Xx
PS. Last night since 3 am I had 8-10 episodes of D. Had to change bedding twice. Not much fan when one is already tired and on chemo. Taken 6 loperamides (max dose).
The only time when I was happy I slept alone ! As however much I yearn for support I would draw the line at my significant other washing sheets soiled by me.
Was feeling pretty grim first half of the day , then perked up and even done the run ! Feeling better now - stomach not sore , gurgling in it stopped and even D episodes are just one every few hours. Was even able to eat .
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Anotherone, I am so sorry to hear about your D trouble. Are you still on the Abraxane or were they going to stop that at some point so that you are only on Herceptin. If that is the case, the D should subside if you are only taking Herceptin.
For me, the Perjeta was the culprit as I have not had anything but HP since 2016.
My main Herceptin SE is the drippy nose. Probably some fatigue BUT I can't tell the difference anymore and feel one drug will be less of an impact all around. I may pick up extra energy.
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Yes I am on abraxane - just started all this. Ha. I can so relate to not being able to tell the difference anymore as one forgets how it used to be.Its ok , it is definitely better - I had a wee without pooing and have not had any D since when I last posted.
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That's good. The D will improve once you complete your cycles of Abraxane. Given your history of D, make sure you tell the MO that this may be a concern before they move you H and P.
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14 hours down the line and still good , no problems, feeling normal now. Yay!
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Anotherone: and everyone else with Perjeta-related "trots". I use liquid immodium. It works faster and better than the pill form, plus you can use as little or as much as you need. A life saver for when you are going out and want to be sure.............
So far I can live with the degree of D I have. My Herceptin runny nose is not too problematic. I just make sure there are tissues nearby. I think Perjecta is the reason for my rash over my eyebrows, although it is not as pronounced as when I was on Taxol.
Hugs to all
p.s. I found Always "diapers" quite comfy albeit a bit lumpy. . I only used them in the infusion room in case of a line up at the loo and when I had a truly awful UTI
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The drip is definitely annoying. I keep forgetting my Claritin to dry it out.
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So the first day after HPT I started with D. I took 2 loperamide. It’s day 4 and I haven’t gone. But I’m not eating much because of nausea and feeling awful from NEulasta. Claritin helps somewhat. I just took colasce. My new problem is twitching of both my eyes. It started on one eye and now is both. I asked mo if it’s taxotere and she didn’t think so. So before I self diagnose brain mets has anyone had something like this? I honestly think I’m going nuts. I have some neuropathy in hands and feet. I knit but am having trouble holding needles, concentrating and now twitching eyes make reading hard. I don’t expect an answer I just needed to write it out so . I slept a lot today. Three 1 hr naps. Thanks for listening.
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Hi all... just popping in to say that I freaked out, for the second time, over having my port out. I have now had two successful Herceptin injections - easy peasy - no P for years and years so cannot relate to the big D or leaks.... but this port seems to be a safety blanket for me. I was scheduled to have it out Tuesday, woke up, freaked out and didn't go! Had scans yesterday and they weren't planning to access my port so instead started iv, and I bled all over the place....
I have hated this port for 7 years and now I can't let go of it! Not sure what the deal is....I am going to try again soon.Interesting to me that some of you are having issues dropping the Perjeta. I dropped after about 2 rounds because SE's so bad (this was years ago) and have been NED on Herceptin alone.... so there is hope without the P! I hope we can ALL live to be 90 getting our Herceptin shots!
Big hugs,
Andi
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