Herceptin - Quick Side Effects Poll
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Kimberlee,
I think a lot of women gain weight with chemo. The taxotere causes fluid retention and will go away gradually.
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My oncologist was just telling me yesterday that nearly all breast cancer patients gain weight during treatment, so don't feel bad, Kimberlee. She said the key is to add in exercise once the worst is over and you are getting back to the rest of your life.
It sounds like you may be worried about radiation, but if they recommend it, you may be surprised at how easy it is compared to chemo. For me it was the easiest part of this whole journey.
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Kimberlee - thanks for your post! I was on, looking around for information about hands cracking and stumbled on to this thread. I, too, thought I was the only one who gained weight during chemo!!! AND, now I know why my nose has been running for the past six months! I had a BMX in August, radiation in Sep-Oct, and will finish my year's worth of Herceptin in 4 weeks, WooHoo!
We had some pretty significant issues with our house right after my surgery, so I was mega-stressed and lost about 20 pounds between October and February. I still needed to lose more, and joined WW with my daughter - we've both lost 10 pounds in the last month and are motivated to eat healthier and exercise.
Good luck, but do NOT stress about it!!!
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mom2ash - Try Udder Cream for your hands. My heels were peeling horrible and within two days of using this, it stopped. If you don't find it in the drug store, ask your pharmacist to order it. I found it one place but not another but he was able to order it for me. Good luck!
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Thank you Ladies! I am relieved to know that it isn't just me. I also have the yucky hands and finger nails...Tea Tree Oil has helped my nails a little...afraid that just has to wait until the taxotere wears off. I use Burts Bees Almond Milk hand creme constantly on my hands.
I am relieved to know why I feel so puffy too! EEEW! I feel like I have a layer of jello under my skin! lol I am starting to feel a little better just today from my last TCH treatment...whew! So getting exercise in will help. I figure if I drink alot of water when I feel hungry (after I just ate...what's up with that?) instead of eating all the time that will help too. Hope I can do it!
Thanks for the radiation info too. I have been a little concerned about the side effects being like the chemo....that was not fun! Thanks for the relief! So glad I found this site! Now.....when will my brain start functioning normal again? I feel like an alzheimers patient!
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Taxotere turned me into a mental invalid. I couldn't recognize our car, and couldn't figure out how to hold a menu. I'm almost back to normal now. I had my last dose of Taxotere in November.
(Sorry this is off-topic on the Herceptin thread.)
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I finished chemo and started herceptin about three weeks into my radiation. I am to take herceptin for one year and have 4 months to go. I always have a runny nose, and even though I do not over eat I have gained 26 lbs. My abdomin is greatly extended and hard. Oncs say they don't know what it is from but I have read many postings from others on H and they are having the same problem. I am wondering if someone who has finished taking H can post to let us know if this weight gain will be easy to lose once H is over and done with. I do not take anything other than the Herceptin every three weeks.
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Hi Puce. Since taking Herceptin I have an increased appetite as well. I hope this goes away after I finish up in four months as I can't afford to gain any more than I already have.
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Hi all,
Finished TCH in October, and radiation in late December. Still have 3 more Herceptin infusions to go - but I'm almost done!!
TCH was no fun, but I got through it, and except for getting tired last week of rads I've been doing pretty good through it all. Was feeling totally great - went skiing, great energy, lot's of ideas for the future - up until mid-February when it seemed I hit a wall. Extreme fatigue, headaches on and off, stiff and achy especially around my neck and shoulders and up behind my ears (which could be causing the headache) - almost as if I'm coming down with the flu, but I never get sick. I actually feel pretty good, I'm just tired all the time and I feel WEIRD.
It seems some of you share some of these symptoms - could this be caused by the Herceptin? Lingering side effects from Taxotere?
So strange, and very annoying - I was feeling great and happy to be done with all the hard stuff and NOW I'm house bound and have no energy for anything...
Thank you all, as always, for all of your wisdom and knowledge, and for sharing!!
Lili
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I get tired on and off. Same with concentration and memory. Seems like when something stressful happens, I just lose it and need a LONG time to recover. I just hit a wall last treatment, just DIDN'T want to be there. ONC RN said maybe I needed antidepressants. I said to myself, I survived all this S*&$% 4 DD A/C, 12 T/H and BMX with DIEP, I can finish this herceptin, get my nipples and move on...I'm back with a vengence! Get out of the way!
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Lili, I read posts more than actually post but I am so gald to read yours. I finished chemo and rads and am now doing Herceptin alone. I've had 3 I think, the first one I was really achy from, the 2nd didn't notice much at all apart from nausea initally, I seem to get that each time, but this time, ugh!! I feel fluey and sooo achy, all around my kneck and arms, headachy too. I couldn't decided if it was the Herceptin or what, but maybe it is. Even though you feel yuck, it is so reassuring to know someone else is too!! I hope you feel better soon though.0
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I am wondering if anyone else has lymph nodes that swell off an on with herceptin? Does anyone else who did TCH first STILL have a bloody nose off and on? I am thinking they may be related.
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OK - went in to get a new Herceptin infusion last Friday. Was not scheduled with Onc, but made RN do a full blood workup. Turns out my vit D levels were very low, below 20ng...whatever it that measurement is
Onc prescribed 4000IU's per day of vit D3 supplement, aaaaannnnndddd today I feel so much better!! Hoping it was as easy as that because I really felt awful. Almost back to full energy now - after about a week on the supplements -, feel much more positive and am able to get back to planning the rest of my life - yahooo!!Now, please remember to always check with your doctor before going and taking a bunch of supplements!! Supplements can interact badly with many meds, so please never self-medicate!
Grimbol: interesting that you seem to be describing almost exactly the same symptoms...perhaps have your blood checked also to see if anything pops out as not normal. Hope you feel better soon!
For the sake of remaining true to the original post about Herceptin side effects, I can add to the list that seems to be shared by so many: runny nose, and difficulty loosing the weight that came on during the TCH, the week after Herceptin I feel larger than at other times - fluid retention probably...
Although the doctors say this stuff has no side effects, it still very strong medication and I'm not surprised that I feel it in my body. Through it all though, I'm very happy these drugs exist and are available for all of us. Women 10 years ago were not so lucky, and some days I feel that I really need to remember that.
Warm hugs to all of you - thank you for being out there!! xo
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Hello all
Haven't been on for a while but hope all is well with you all. I'm continuing with my 3 weekly infusion of Herceptin. I got my 3 monthly ECG on 20 March. The next day was my 3 weekly visit to clinicc to give bloods and see Onc. However the clinic's IT system was not working properly so Onc couldn't access the ECG results but as I got the usual phone call that night to say that I would be getting my 3 weekly infusion of H the next day I presume all is/was OK. My next meeting for bloods and to see Onc is 12 April so I will find out for definite then. Hope the ECG results are/were OK because I have booked a holiday in Spain from 15th to 22nd April.
I am a practising Catholic and last Sunday is known as Palm Sunday. At mass I was reading the Readings, Psalm and a part of the Gospel. As you all will know that a SE of H is a runny nose. Well it started on Sunday morning with a vengance ! ! ! I had to stand all during the time I was reading with my hankie in my hand. God obviously thought to Himself - I think I will have a bit of fun with Frank today lol. But all went well.
Take care all.
Frank
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I may have to have Herceptin, waiting on results of a test, since the original test said "undefined". UGH. For the runny nose, sounds super fun. Did any allergy medications help stop the faucet? Also, does everyone have a port? I had mine removed (and it ding-danged hurt!) after my last Chemo about 2 1/2 years ago because "you won't get cancer again" (Uhm hum) and honestly I don't want it back, but I have only one good vein left. Just what I want, another scar on my chest.
Thanks
Amy
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I haven't posted much lately since I had been in remission until now.
I have been on Herceptin for 9 years and it is responsible for my 6 years of remission from liver mets.
No side effects at all from Herceptin. No runny nose, etc. My EF is currently 50, but it goes up and down.
I now have a spread to the lymph nodes behind my sternum and just started on Faslodex, but have remained on Herceptin.
Denise
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Mzmerz: the runny nose is actually not that bad, not for me anyway...not like it hurts or anything... It was worse during chemo due to the fact that all the hairs in your nose - i.e. the natural stoppers of all things runny - are gone.
I've only had cancer once thus far, and hoping to be done at this point, but I have to say I am SOOOO happy about my port. Scars and all!!! I saw all those poor people at the Oncologists' having to access veins...soooo very happy about the easy access!! Can't they just access through the same scar you have since last time? Why would they have to make a new site?
The Herceptin is a breeze compared to anything else you go through during your cancer treatments. Be happy it exists. 12 years ago we would be dead people walking.
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Herceptin is a breeze for some people. I haven't had chemo. I'm sure it is harsher so I shouldn't complain, but to say herceptin is harder on some people than others. I haven't had the runny nose, but the first two weeks after the infusion... so far it affects my heart, leaving me breathless, and fatigued...plus, just feeling lousy. I haven't had an infusion in 5+ weeks, and I'm feeling soooo much better. I have a lot more energy and I don't feel my heart pounding. My next infusion is on Monday...and I dread it.
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Hello all
Mzmerz the runny nose is intermittent and does not cause any pain. I don't take anything for the runny nose. I reckon that the put enough poisonous chemicals into my body during the chemo treatment to do me a lifetime so why put more chemicals in ! ! As some of the others have said compared to some of the SEs of chemo Herceptin is a walk in the park. OK you have to be monitored regularly for heart toxicity as it can affect your heart's Ejection Fraction (EF) but if it does it is easily remedied.
Denny123 I'm so glad that you have posted. You have made my day. On 2nd August 2010 when I was diagnosed for the 2nd time I was told that I had liver mets, that the damage to my liver was extensive and the prognosis was 2 years. I have been on Herceptin over a year now - started on 6 January 2011. My last 3 CT Scans, over a period of 10 months, have all shown that the mets are static. My EF is holding between 50and 55. As Lili2 said, 12 years ago and we - those who are HER2+ - would be dead people walking. Herceptin is a wonderous treatment.
Take care all.
Frank
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Hi Frank,
I am so glad that Herceptin is working for you!
At its worst, my liver had a 9cm tumor plus 2cm tumors throughout---the dreaded "too numerous to count".
Herceptin is the only reason why I had been in remission and my liver has completely regenerated from the cancer.
I hope to stay on it forever.
Good luck!
Denise
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Frank and Denny, I am am so happy that Herceptin is working.g for you. Much love.
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Hi all, I will have my final herceptin onApril 19th. Yay! I've also had the runny nose and sores in my nose throughout, the onc. acted like it was nothing and the nurses always said, " good thing there are no side affects with this" but there are, even though very minor after going thru the TCH for 16 weeks, I always scheduled myself off of work the day after my herceptin, headache, slight fever, body aches and just kind of a fuzzy headed feeling and also have trouble sleeping (more than normal) for several nights. It is an awesome drug and I am very thankful for it (just found this link, wish I would have seen it sooner) but for those of you who feel kind of out of it for a day or so just want you to know my experience, I don't think my energy level is quite back and I know my motivation is not my hair is coming in but less than 2 inches in 8 mo. so very slow and I blame that on the herceptin as well. Anyway , I hope my experience helps someone in understanding theirs. 0
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It's been six weeks since the last herceptin infusion. I'm feeling so good that I dread the herceptin infusion tomorrow morning. My heart palpitations are hardly noticable. My energy is back. I'm a little nervous about the appointment with my onologist tomorrow morning. I pray the infusion will be without side effects and I'll feel as good as I do now.
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Eve, I wish it will go well for you my friend. Keeping you in my prayers
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Thanks Moonflwr for your prayers. My time with my oncologist was good. This last week, I had a unusual burning pain on my left side under my rib, and I mentioned it before leaving. It wasn't that bad really except last night it was pretty intense and kept me up for a few hours. The doctor said if it continues this next week, she would order a scan. I like that she is not one to ignore or to minimize it. . .
Besides that, I seems that my first echo was ef 65...after the second infusion it fell to 50/55. She said if it falls under 50, she will take me off herceptin for a few months and give me another echo before giving me another round of herceptin. After she looked at my first echo seeing no heart problems to now having pvp's, and a lower ef after just 2 infusions she's concerned. If I continue the herceptin I will have an echo every 6 weeks.
I ask that the herceptin be slowed down to an hour and to forgo benadry. The herceptin infusion was uneventful. I had several errands to do afterwards .... I needed to be wide awake. After getting home late this afternoon, I layed down for a few minutes and slept for a few hours. I have a sinus headache, and notice my heart is racing. I hope it settles down in a few days and soon I will feel good again. I hate the fatigue feeling.
A nurse said today that most don't have heart issues with herceptin especially taking herceptin alone. Apparently, I fall in the 12% that do have heart related issues.
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Oh, please don't think I'm saying Herceptin is "nothing"...I've said in earlier posts, and I'll say it again - this is strong medication! Yes, the Onc and the nurses will say "no side effects", but my nose keeps running, and my hair keeps NOT growing (aaaarrgghhhhh!!!!), I feel bloated and tired after the infusions... It's just that it's LESS noticeable than the chemo, for example. Only 2 more infusions, and I am so very happy about that!
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Lill2..did you also do chemo? It seems that most people do chemo and herceptin together. I'm wondering if due to lower immune system due to the chemo is perhaps the reason for the runnynose. I'm doing the herceptin only and haven't had a runnynose at all. I have noticed a little more of a tummy, and gained a few pounds where before treatment I couldn't gain weight. I too feel fatigue for at least a week after treatment.
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I do appreciate this thread and all of you and your input. I am probably about half way thru Hercpetin. I seem to have an ok infusion and then a rough one! I don't have so much trouble with the runny nose, just sometimes, although it does get sore etc. I do have nausea for a couple of days, but the worst is the bone/muscle aches. I get my next one on Wednesday, hoping for a good one this time. I'm also due for another echo this month, hoping it is still good too.
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Evebarry - sorry to hear about the EF drop, PVC's, and chest pain - but wow it does sound like your doc is ON it and does not ignore your concerns and is monitoring you closely. That always gives me such peace of mind!!! Hope your next EF is ok!
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