HERCEPTIN and/or PERJETA Threads
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I get periodically twitching eyes, more commonly my left eye. I used to attribute to anxiety but for me, I am more likely to blame it on nights that I have not slept as well. I slept terribly last night and was extra tired today so it did have some twitching.
Andi, after my visit with my MO yesterday, she said that she would give me only Herceptin this time. If I do not have any leaks then she will drop perjeta and just give Herceptin. She felt it was unreasonable for someone who is NED from the neck down to have to wear diapers for cancer treatment and I was relieved. I am trusting there will be no leaks and am relieved that going forward, I will be having Herceptin only.
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I have a twitchy eye, too. My left eye, which also waters copiously but it has gotten better with time. The drippy nose has also gotten better with time.
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My eyes twitch too, I chalked it up to lack of sleep.
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My drippy nose is usually only bad the first couple of days after Herceptin. Did not have Perjeta so waiting to see what effect it has on my digestive system. I started taking digestive enzymes with meals as well as my probiotic in the morning. Seems to be working so far. Sunday will be the day to know if it was the issue as that was the day I started having the incontinence over the last 2 HP treatments. With only having H this week, I am hopeful that I will not have any incontinence this time. I know it is not caused by my brain issues because my bladder is NOT incontinent so it has to be the Perjeta.
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Thanks for your input on my twitchy eyes. Sometimes I think the mo looks at me like I’m making it up. I told her about the drippy nose 2 years ago and she said she never heard of it. Off to get some senacot which I may regret. It will make for another exciting weekend indoors.
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I am going to see my opthamologist about the eye issue just to be safe, I've also seen him for floaters since right before my diagnosis but nothing suspicious was found at that time. It's time to have my eyeglass Rx checked anyway...but I have so many other appointments right now!
My thyroid US is today, after this is over maybe I'll get time to visit the opthamologist.
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Fun fun fun - twitchy eyes, incontinence and multiple appointments. I have read the last page and chuckled to myself. Better that than crying I reckon. My toilet habits are perfect now - I guess it could be food poisoning combined with off kilter GI tract. What's up with thyroid, Olma?
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hi anotherone, when I got my pet scan the first week of October , the radiologist noted that “the right lobe of the thyroid appears enlarged, consistent with last scan"or something like that. He must have based that comparison on the film because it has not been noted on any of my reports before. Anyway because of that, my MO gave me a script for an ultrasound.
I had thyroid blood work last year which was normal. Some doctors and my sister who is hypothyroid have remarked on it before, just from looking at my neck, you can see a difference on that side if you look for it. But my thyroid tests have always been normal. This is the first time I've had any imaging on it. I'm not really worried but I've been wrong before ; )
I also need to get to my primary doctor about my blood pressure readings plus my dental saga is still playing out. Staying alive and in one piece is becoming a full time job 🤪
I try to stay grateful though...it could be worse
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yep. It's ok, when we are going to be dating we are going to chose men our age bracket so we can have entertaining conversations with them on full time job of health staying alive
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That’s right! When life gives us lemons...find someone who is also drinking lemonade 🍋 to spend some time with! My sis and I turned weekly chemo into a social occasion for the two of us. We would go shop or have lunch after. It can work
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Just have to post this. Sorry for the language if anybody is bothered by it but I think it is funny.
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That was great ! Laughed. I shall use it , thank you xx
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Excellent! Chew em up and spit em out! I’m with you mar
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Mara! I laughed and laughed! Thank you for that!
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how was your Sunday without P, mara ?
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It was good. Between the digestive enzymes and probiotic, have had no incontinence. I also feel less tired. The only thing I have noticed is my nose drip and neuropathic pins and needles. Even those SE are much less. If it continues, I'll be able to just continue with Herceptin. My digestion and bloating are even better, though that could be related to the digestive enzymes. I highly recommend it to people who have drug related digestive issues, makes it all go smoothly without bloating or indigestion. Not sure if it is recommended if one has colitis, IBS or other digestive conditions unrelated to cancer or the drugs. .
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Overall, it has been much easier dealing with just one drug instead of two. I am happy.
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yes digestive enzymes should be even more useful to people with intestinal unrelated issues.
I figured out a pattern in mine - I reckon it is abraxane. It starts on day 5 and goes till day 7. I will be much more on top of it this time round, shall see.
Glad to hear you were fine/ish. Have you tried loratidine for a drip? It is useful for cancer as well I think.
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Anotherone, I do have Claritin, I just forget to take it. It is never super bothersome for me, even less so without Perjeta. If it becomes a problem, I will make an effort to take it.
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Mara - SO glad to hear that your side effects are better without the P! I hope it continues so that you can stick to Herceptin only. I was so much happier - seriously "almost" a game changer.
XO
Andrea
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Andi, I am very happy. No incontinence at all, everything is working well. Digestion is better to although I may have to credit the digestive enzymes and probiotic. No bloating with normal trigger foods. So glad. Not noticing much less fatigue yet, though I imagine that will come again with time. Was really nice only having the half hour infusion (we don't have the injection yet). My MO is awesome and really looks out for me any way she can.
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Hi All,
I am on h+p indefinitely and have responded very well to treatment so far.
I just had an echo done last week which had my ejection fraction go down from 55%-60% (baseline) to 50%-55% (after ~12 months of h+p).
I feel great and have a decent amount of energy.
Have other people had a similar drop with some stabilization. I know that a 5% drop over 12 months is fairly small but obviously I would rather it not go down further. I am hoping to remain on h+p for many years!
Thanks!
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Last echo I was at 65 percent EF. I have been down as low as 50 in the past but have had it go up if I was particularly active. When I was really sick after my brain radiation, I could not exercise for months and my LVEF went down to 50. Once I recovered from that and got more active with walking and weights at home, I went up to 65 LVEF. It can and does fluctuate from time to time.
Also want to mention, if you MO sees your LVEF go down too much, they can and do regularly take people off the drug until the LVEF goes back up. If you are concerned about the drop, let them know. If you can be physically active, whether walking, from a chair etc, start with that. If you are physically active, keep it up. The fact you feel good and have good energy indicates that your heart is in good shape still. Good luck.
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Hi everyone
I have been on maintenance HP for 2.5 years now. Unfortunately, neuropathy in hands and feet has become a concern, an annoyance at this stage but getting worse.
This has made me question dropping Perjeta. I wonder did anyone do the same. Of course there is then the worry of progression as a result.
So this is my current dilemma, do I push on through or move to the Herceptin injection?
I know some of you have had various issues with both drugs and apologise in advance as this has no doubt been raised before. I am aware of some ladies who are 6, 7 plus years out on both HP, but the same on H alone. Feels like a nightmare decision to make.
Would welcome any input.
Regarding LVEF- I consider myself lucky to have retained a 60 avg rate. I try to exercise whilst admitting to being overweight. I think below 50 is a concern but some patients have a short break if this happens and resume H again.
Mara- glad digestion is better.
Liz
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Hi Jg12705 - And all those suffering from this: I have been inundated by the itch that also feels like nettles, and I was positive it must be neuropathy itch so a couple of times at bedtime have found. Low dose Gabapentin helped a lot. Problem with that is it makes me feel hungover in morning but at least it helped confirm that there must be something neuro going on. My GP prescribed a topical cream from a compound pharmacy that has both Gabapentin and lidocaine in it. It really is helping and being just the second day I sure am praying it keeps helping! Odd how it seems to be in just random places- for me it’s an are on my hand just on the top not the palm. The cream is expensive and not covered by insurance. But I was going insane with itching and it is worth every penny so far. The ice helped but I was Needing colder and longer applications.
Allison
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thank you survivor , trying to store all the info in my head for when I will need it ..
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Let's hope you won't need it!
I'm not clear on if everyone on Perjeta experiences it? Or if it's those who have been on Taxol and other known neurotoxicity drugs and experienced neuropathy previously who are maybe more susceptible?
Alli0 -
I would have the neuropathic itching when I was on both Herceptin and Perjeta. Only for a couple of days. No drugs for me when I had it, just did some relaxing breathing and that would stop the itch as my body relaxed. It also works on my tinnitus that got worse in the right ear after brain radiation. I am only on Herceptin now and the itching is far less than it was on the two drugs together.
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On another note, I still am having some digestive issues with Herceptin only. Less severe than on Herceptin and Perjeta together, but still there about the first week after infusion. I get a touch of nausea as well. Apparently, my MO and I think it is one of her residents that decided this to be honest, don't think I need my ondansetron (Zofran) that I like to take for about the first week to feel better. They say nausea is not a side effect of Herceptin alone. How do they know that if they do not live in my body or what my body is doing after infusions. I did not used to have issues but sometimes, we become more prone to SE the longer we are in treatment. They said no to prescribing it. I also take it before scans as contrast dye makes me nauseated too. Guess I will have to ask my PCP to prescribe it because I don't want or feel I should be told no on a drug that improves qol. Not like I am asking for something that interacts with other drugs or is a risk for addiction etc.
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Longtimesurvivor, thank you for that info on the cream! I will see about getting a prescription for it! I have been taking doxepin which my dermatologist prescribed and that seemed to help for a bit, but I am back on icing now. So frustrating! I am confused too! Is the itch the combo of H&P or one or the other. I tried the oral gabapentin and had the same SE as you. I feel pretty petty when I complain about itching, but this is like no other!!!
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