HERCEPTIN and/or PERJETA Threads
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I know the itchiness has been almost unbearable for me sometimes too. I’ve found that I’m super sensitive to wool and also synthetic fibers on my neck. I used to wear scarves all the time and can rarely bear to wear them now as it sends the back of my neck into an itch frenzy. Here are the two things I use for itchiness. The tube I got from my dermatologist. I only use it for really intense flares at night as it does have steroids which I like to avoid. But when I’m really feeling the crazy itch I find it does help quite a lot to calm it.
I'm not sure how many mg of CBD would be in each dose of the hemp CBD oilas I guess that depends on how much you use, but I think the whole jar is 50 mg. I usually put a little on my neck before bed.
Meditation actually helps as well. I find if I get overheated I can feel it coming on, so drinking something cool and just calming my mind can help keep it in check.
I
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The only thing that helps me at night is the 4-7-8 breathing that relaxes the body. I can largely ignore the itching when in more of a relaxed state. Some days are worse than others but I keep trying to remind myself I am alive and the itching is not all the time.
Here is a link in case anyone has not heard of it. Good breathing to also get relaxed to sleep faster as well or if anxious. Lowers blood pressure as well.
https://www.youtube.com/watch?v=YRPh_GaiL8s
Edited to add that I have started B12 vitamins to see if that will also reduce problems. I got a headache after taing it but ibuprofen removed the headache. I will see what happens.
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Started H+P plus Taxotere this week. Reading up on side effects and your posts. I am starting with some reservations but what else can I do. 2 years on Her and laetrozole. Stable until this progression. Radiation helped pain and function. Not looking forward to itchy. I’ve taken magnesium D3 and calcium or the last 10 years. Interesting discussions. Take care all
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I stopped taking the B12. I seem to be sensitive to supplements as I got headaches, lightheaded and dizzy. I will be having both drugs tomorrow for the first time since June. Herceptin really wasn't bad. We will see what Perjeta does. I do get the neuropathic itch but I can still largely ignore it. If the drippy nose is too bothersome, I will take claritin again. If I get the big D, will just take 1mg of immodium to avoid constipation.
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So, I did have both H and P on Thursday. Only side effects that I did not notice so much on Herceptin which I had 3 weeks ago is a minor drippy nose, dry chest feeling which goes away throughout the day and a bit of the itch. The only other side effect that is happening is bloated stomach with every meal. Stomach is not painful, just feels bloated. I am going to ignore it for now because I would prefer to just use probiotics and a rabeprazole with dinner. There is no pain, no diarrhea thus far. I know the stomach issues may last a few days. I am finding if I take a half hour walk after meals, it manages the bloaty feeling. Don't think it is gas as not painful. Not going to over medicate yet either as I know my body needs to become accustomed to the drugs again.
Just to note, I did not bother taking Claritin this time, wanted to experience the infusion with as few drugs as possible. I also am fatigued but that is manageable with exercise or housework. Just cannot sit very long without falling asleep which I don't think is abnormal, even in people who don't have cancer.
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glad to hear you are managing , long it may continue.
My first infusion should be on Tuesday - hip hop hurrah, mixed feelings - on one hand would be good to wipe cancer out (hopefully) , on another - these are the final days I am "normal" - then I will have port presumably till the end of my days , will lose eyebrows and eyelashes and will keep a keen track on SEs of all the different and wonderfull medication I will be taking till the end of my days. Gee, I just made myself cry. Not that it takes long to make me cry - any little thing can do it. I know I should be grateful for feeling fine now and for having quite a few years median survival perspective without having to be on chemo all the time - what a crappy lot we have , eh.. crying even more.
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Anotherone, biggest things I recommend are exercise, walking if you can. I do it after meals to aid digestion. My MO said it is alright to take a probiotic. Check with yours if you have mets, this may be something to hold back if you have more mets to avoid infection. I also take rabeprazole in case I get heartburn. I take as needed, does not take long for it to help. You will find a normal, and the chemo portion is not forever, just until the latest mets are knocked back. The other SE from HP will be less once there is not chemo and hair does grow back once not on the chemo and just HP.
Giving my persoanl virtual hug on this stage of your treatment.
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thank you mara. Jane McLelland that written cancer book used to walk after food so that glucose would be taken not by cancer but by muscle. So it may help in more than one way. Thank you for a hug , I felt it. There was nobody else that I told about this feeling and nobody else given me a hug about it so it was appreciated. Ah well , crying again now..
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Having a silly reaction to HPT & neulasta. Constipated and pain. I had just cleared Divertric attack 3 weeks before I started this. Monday. Did my usual tricks finally called onc today. 99.9 temp. ONC told me milk of magnesia. Hope it works I was almost ready to do enema but afraid that would make things worse. Sorry maybe TMI. Can I blame Claritin. Eating and drinking as best I can. Next time I’m going to skip Claritin I think. NEulasta was awful. Bone pain and I didn’t sleep for 3 nights. Not to worry everyone I have something wrong with my bone marrow my normal WC is 3 on a good day. Tramadol didn’t touch it. Only took tram one night. Aleve Advil Tylenol. Didn’t help. Sorry to complain but this is only first HPT. And I was worried about the big D. Ive been to exhausted to walk far so keeping to house and 2 flights of stairs. But know that will help. Cancer is full of surprises.
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Maire, I am so sorry about your lack of sleep with the neulasta. I do remember that pain as that was the only thing I could reallty call pain. They say we forget the pain but I have never forgotten it in 4 years. You can get lots of good exercise within the house without making a big production of it. Stairs are good, walking back and forth to the kitchen is also good. I cheat my steps by walking back and forth across my little apartment if the treadmill seems like too much effort, think pacing except a bit faster. Any movement is good, does not have to be a full walk when you are not feeling up to it. A two minute, or even one minute walk a few times an hour is helpful and may be more manageable when feeling unwell. House walking, even living room marching in one spot counts. It should make you feel physically better too. I hope the taxotere will be done soon for you.. HP usually does not cause so many issues but with a chemo in there of course SE are worse. Sending you my strength while I have it.
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stopping by to say H&P have given me 7 years with stage 4...and I am so grateful! Every 3 weeks for 7 years...my daughter is 8 years old and my son is 15...here’s to another 7!
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Maire you said this is your first Herceptin and Perjeta? The first dose of Herceptin is a load dose, it's higher than the usual dose, and for me it was absolutely brutal. I had bone pain so bad that I could barely walk up stairs without help, plus mild fever and chills and I felt like I had been run over by a truck. Add chemo and neulasta on top of that and it's no surprise that you feel so miserable.You're doing better than I did after the load dose, I could barely drag myself off the sofa for days. It really does get easier, well at least the Herceptin part of it does but can't say the same about chemo. I hope you feel better soon!
What is the T, taxol or taxotere? I had to take Senokot daily the first time I did Taxol. I've never had much a problem with the big D on Perjeta, so I;m always more concerned about constipation when I do chemo but lately it seems that chemo and Perjeta balance each other out.
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Thanks everyone for the advice and support. I was on Herceptin 12 years ago for one year. And recently for the past 2 years. Had loading dose again in Aug. I won’t feel so bad about walking, Mara. I guess I do get it around the house. Made soup for the fam so I wouldn’t have to drive to the market. Lol. But I will keep moving every little bit helps
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Marie. Try taking Claritan the day before, the day of, and the day after your next neulasta shot. A chemo nurse gave me this tip. I didn't try it until my second shot of it but it helped considerably for bone pain.
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Kjones13, that is awesome!! So glad to hear it!!
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Kjones, that certainly is awesome indeed.
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Almost 3 years and counting. Well done . Xxxx
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Not that those not getting to NED are badly done - it depends on so many factors. Still well done you !!
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kjones- awesome! Thanks for posting. I think you must be one of the longest on HP.
Great news!
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Hi all.. just echoing exactly what Kjones said (Congratulations Kjones…. I know how grateful you feel to be able to watch your children grow up!) … this month it is 7 years for me on primarily Herceptin. I dropped P after a few years. I don't go every 3 weeks - more like every 6, but my oncologist is very supportive. I do know what you all mean about the loading doses. I have been given them by mistake from time to time and I TOTALLY notice the difference. I feel like I have come down with the flu. If just a normal dose, I am usually okay but once in a while I definitely feel SE's. I think the biggest issue for me has always been those abdominal cramps. I know they have a name.... I get them consistently, especially when dehydrated.
I am having my first Herceptin shot/injection this week! I am so excited, although I have heard it's painful so a little wary. As long as it goes okay and I don't experience SE's that are "abnormal" (my oncologist didn't define what abnormal meant) I am scheduled to get my port out on Oct 22nd. I do have scans in October as well.... always anxious, no matter how long it's been or how well I am feeling.
Hugs to everyone else! In spite of all the ups and downs, I am grateful to be on this drug.
XO
Andrea
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Andrea, I’m eager to hear how the shot goes. I just saw an article two days ago that they have also found that an injection with herceptin and Perjeta as well should be available soon. I see my dr this week so I’m going to ask about it. I hate shots but it can’t be much worse than an IV, right?
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Yes, let us know how that shot goes, Andi.
And so happy about H/P combo shot being trialed! Looks like the trial was for early stage, but I’m sure they’ll get around to including us soon
https://finance.yahoo.com/news/roches-perjeta-combo-meets-goal-212709993.html
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Andi, best of luck for the injection. I'm sure the reduced treatment time will feel amazing. I don't have a port but my veins are getting very tired. If I can hold off until a dual combo injection is available that would be my preferred option.
Olma and DGHoff thanks for the valuable info. I wonder how long we will have to wait?
Liz
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andi , can you find out the location in which they are going to do the injection( or check with them the suitable ones and choose one of them yourself) and place some emla/ametop cream (available over the counter here in the UK )on it for about half an hour before? No need to have pain if it can be avoided.
Jackboo, any particular reason why you have not had a port installed ?
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Hi JG,
Yes, I get an awful, horrible painful/itchy rash. My MO sent me to a dermatologist who gave me a corticosteroid cream which helps. Sometimes, though, nothing helps! It seems to come in waves where I will not have it at all and then WHAM a severe attack. I am in the throes of one now with little sores that are both incredibly itchy and tender at the same time. This only ever happens on chest and arms. It is torture and, I believe, the worst side effect. The flare up I am having now is the worst ever. I actually put a call in to my derm yesterday with the hopes of seeing her to get some relief!
Take care,
Nancy
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It's interesting, but I haven't had tumor markers done in almost two years. I wonder why my MO doesn't order them. I am seeing her at the end of the month, so I will have to remember to ask.
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Rash. I have the same side effect. Totally random. I have to take benadryl sometimes otherwise I wake up with blood from scratching my arms or legs. Baby powder, cortisone cream...benadryl.
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Yesterday was my first one. I was in a hospital from 9 am to 9 PM! Nobody told me it was so long. It messed up me returning home, I had to take overnight sleeper train , could not get a berth as they were all pre booked and had to try to snooze not very successfully on two adjacent seats. Got home at 5.20 am , eaten ( after almost 3 days if fasting and now laying in bed ( or better saying on the mattress on the floor as ex kn moving out taken his bed ) typing on the phone. No SEs as yet - when do they start ?
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Anotherone, I seem to remember,day 3 is the worst. Hang in there.
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Anotherone wow,what a horrible experience for your first infusion! I'm so sorry you went through that. Why 12 hours, did they keep you waiting around? Is that what it's going to be like for you every time? My longest days when I do chemo with H&P have been 5-6 hours, and that includes labs and vitals when I arrive, a consult with my MO, and then we do one hour each for Herceptin and Perjeta (one hour minimizes SEs) and I think half hour for chemo, plus fluids/flushes. And I think that is a long day! I can't even imagine being there for 12 hours and then not getting home until the next morning. How exhausting!
Did you have someone with you, or did you have to go through all of that by yourself? I hope your next infusion is a better experience for you.
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