Herceptin - Quick Side Effects Poll
Comments
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serenitywisdom - coQ10 is for the heart.
AnnAlive - I think the lifting/painful nails are from the taxanes. If herceptin affects the nails the effect seems to be brittleness or softness.
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What does Co Q 10 do for the heart? My onc said nothing about it. How much should you take? Who recommended Co q 10.??? Oncologist, naturopath,, health food store?? If Herceptin can cause heart damage it seems to me that the oncoloigsts should recommend this.
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serenitywisdom - Here is a link to an article. If you google coq10 site:.edu you will hopefully get some good resources to read about it. I think that coQ10 is in with most of the other supplements, a bit of clinical data out there but nothing definitive and probably helps some people but not others. My mom told me about it for blood pressure! I did not take any supplements during chemo or rads. Onc did not approve coQ10 during chemo. I am 9 months since my last chemo. I did take it during the herceptin only part of treatment starting after rads.
From the above linked website:
Heart damage caused by chemotherapy
Several clinical studies suggest that CoQ10 may help prevent heart damage caused by certain chemotherapy drugs, adriamycin, or other athracycline medications. More studies are needed, however. Talk to your health care provider before taking any herbs or supplements if you are undergoing chemotherapy.0 -
AnnAlive - I had problems with my toenails also, lost the big toe ones, but my MO said it was a delayed response to the Taxol, which makes sense to me, since that is a SE. I also would push for an Echo prior to your surgery.
Sewingnut - I was offerred the flu shot at my last Herceptin, but did not get it. I'm unsure in general if I want to get it. I never had one before last year, but they gave me one before I started chemo last year.
Re: Echo's, I had one before I started Taxol/Herceptin as a baseline and then every 3 months after that. I keep track of the time and ask the RN for a script when it's time and then go see the cardiologist.
I'm only taking Vit D for my bones, 2000 IU, and I only started that 6 months after finishing chemo.
Wed, was Herceptin #15, so only 3 more to go!!
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I saw the podiatrist today and he pronouced my toenail(s) not infected! There had been hardly any drainage since I first noticed it 2 days ago, and no redness. He trimmed off the part of the nail that had lifted (about half of it) and trimmed the start of some lifting on a few other toenails. His nurse said they see this with chemo patients. I am so glad for no infection, since my surgery is in 6 days.
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Okay, I finally sat down long enough this morning to watch the movie "Living Proof" about Herceptin. It was incredible and gives me great hope!
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Achpurple I watched that for the 2nd time on Saturday night. It's a great film. I have said it on here before but I met Dr Slamon last November when he was here in Ireland and chatted to him for a few minutes and chatted to him the folowing morning as we were staying in the same hotel. Did you know there is also a book on the development of herceptin? It's called Her-2. The making of Herceptin, a revolutionary treatment for breast cancer. written by Robert Bazell. You could probably get it 2nd hand on Amazon. It doen't say it in the film but there was a big party when Herceptin finally got all its approvals and went onto the market. In the book it states that Dr Slamon was conspicuous by his absence. I will have to check the book again to find out why as I can't remember. (chemo brain lol)
Annalive I am also having probs with my nails. Finger nails very brittle and toe nails look a mess.
My Onc arranged for me to have an EchoCardioGram before I started Herceptin and then 1 every 3 months. I have never heard of a MUGA here. I also get a CT Scan every 3 months. I will be giving bloods this Wednesday and seeing the Onc. Will get the results of my last scan and ECG. Assuming bloods OK I will get dose #14 on Thursday.
Take care all.
Frank.
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I have been on Herceptin only since the middle of August. All of a sudden, I have se's I haven't had before. My joints are really stiff and sore, and my legs feel so heavy, it is difficult to walk up stairs. Any one else have this? I am wondering why it would take this long to start.
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Kay1963 - I had the same se's while on Herceptin. Achy stiff joints in the morning. Knees were especially bad. The farther out I got between each 21 day cycle the better it got. It would almost be gone and then I would go in for another treatment, and within in a few days the aches were back. I did find that exercising helped. I did and still do a lot of walking - both outdoors and on a treadmill.
I to figured once the chemo was done the aches would go away, and I believe it was the 2nd or 3rd Herceptin only after TCH that I noticed the achy feeling.
For me, it took about 2 months after last Herceptin for the aches to go away.
The heavy legs - I didn't have that part so can't comment on that. Maybe someone else can.
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Hey, thanks cardsfan for the info. It's nice to know someone else had the exact same thing.
Our teams are duking it out tonight. I'm from Philly. Everyone here is in a state of panic. I am a huge fan and pulling for a Phils victory tonight. I love Cole Hamells. Good luck!
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I too just watched the movie 'Living Proof' and was deeply moved and encouraged for all. Until now, I did not even know about Herceptin. Never give up!
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Never surrender! (Galaxyquest - my favorite movie)
Welcome! Wishin_hopin_prayin
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Thanks for your welcome Omaz.
I LOVE that movie..... Galaxyquest.... Never Surrender! Never Give Up!
My favourite quote by Helen Keller is:
Keep your face to the sunshine and you cannot see the shadow.
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New to this thread but wanted to list my SEs. I may get one, all, or none:
1. Joint pain. I attributed this originally to Tamoxifen, but I have a sneaking suspicion after reading some of the replies here it's the H.
2. Fever. If I get a fever it usually occurs within 24 hours of infusion, stays around 100.6 to 101. Occurs at night and is gone the next morning.
3. Muscle Aches. The only two times I got these I didn't eat the day of tx.
4. Rapid heart rate, hurting chest, almost like heart attack within 24 hours of infusion. This has happened twice, and last time I really thought it was going to kill me. My heart rate stayed around 130-140 for well over 6 hours sitting still.
5. My ejection fraction has dropped 7-8 points. My Onc said if it hits 10 I'm off Herceptin (even though that still keeps me above 50%). I know each Onc is different in what they consider acceptable. My Onc said 10 points is doing more harm than good at this point (I have 3 infusions left).
6. Fluid retention. Again, not sure if this is Tamox, Herceptin, or left over from TC, but my thighs are still retaining fluid. Not like during TC, but enough I can feel it. I'm hoping once the Herceptin stops, that will resolve.
My next MUGA is the 13th, the day before my next scheduled Herceptin. I doubt the results will be in by then....but if I have a reaction like I did last week....THIS TIME I'm going to the ER...just so they can document it. My Onc acted like he didn't think it was the Herceptin.
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Sorry everyone, I forgot to post here the results of my MRI, it was fine. Hopefully you read it on other posts. I have been on other threads and forgot to check back here, oops.
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Hi everyone,
Just want to comment a little more on herceptin and heart damage. Have most of you heard that it is reversible after you stop taking herceptin ? I am only half way thru (have 6 more months) and heart changes occuring, that makes me a little apprehensive. Today my plastic surgeon who is planning to switch out the tissue expander for implant said he would feel better if I see a cardiologist before I get surgery to do this. I am not having any heart symptoms but it is a little scary. How much worse will it get? Unknown?? My nails breaking, the eye tearing etc seems trivial compared to this. I am going to start taking coQ10. Saw a MD naturopath who recommended this. Also omega 3's, selenium, vit a , c and e now that I am off the taxotere and carboplatin. Comments welcomed and I too loved the galaxy quest movie and Never give up!
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Hi stlcardsfan & Kay1963
I have had stiff achy joints and muscles since I started Herceptin in April with knees especially bad. I am on the Persephone trial so I only take Herceptin for 6 months (9 sessions) so I had my last session last week. Interesting to hear that the SEs go away after 2 months so will let you know. Certainly it has taken 6 months to gradually lose the side effects of chemo and get my senses of taste and smell back.
I do have a general question for anyone who is interested. My Grandma had breast cancer and my mother had this theory that what started it was a fall she had when she injured her breast. I had an accident a couple of years ago when I fell on my tennis racquet and injured my breast. Can anyone else remember an incident that may have jumpstarted the breast cancer?
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My warrior sisters Some Good News
You will remember I'm on Herceptin (see my profile). Chemo attempts to shrink the tumours but as you will know Herceptin mainly halts them and stops them from growing any more and if that happens then it is working. I met my consultant Onc this morning to get the results of my latest CT Scan and ECG. Scan showed that the tumours are stable and have not increased in either size or number. There is no evidence of the disease any where else. In terms of Herceptin that's sucessfull and both my Oncologist and the Onc nurse were very pleased for me and were very upbeat and positive about my progress. Also as you know a SE of Herceptin is that it can reduce the ejection fraction in your heart but the ECG showed no probs there. So I will be saying a heartfelt prayer of thanksgiving for my continued success and that that success is visited upon all those in this fight.
TonLee sorry to hear that you are having SE probs. but if you have read the book on the development of Herceptin or have seen the DVD "Living Proof" you will see that Herceptin is a wonderous drug. With all my heart I do hope that things improve for you.
kay1963 how are you haven't seen you in a while. (on here that is, in case any of you are thinking otherwise lol)
I get dose #14 tomorrow (Thursday) and as some of you will know I get my infusion at home. The clinic is bursting at the seams so it's much more civilised being treated at home. Fortunately the only SEs I'm getting are the brittle nails and runny nose which in the scheme of things are inconsequential.
Take care all.
Frank
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Hi Frank! I am doing well too. Had surgery 7 weeks ago today and started radiation yesterday, and continuing Herceptin until next May. I was hoping for a better path report from surgery, but the docs seemed to think it was "excellent". Tumor had shrunk to 1 cm from over 4 and another smaller tumor also shrunk to .3 cms. Also 2 places of 2 mm of cancer which they think had been in lymph nodes, but no lymph nodes were present. Surgeon said she's seen chemo destroy the lymph nodes before. I can't find anything about it with Dr. Google. Surgeon said the margins were good. So I am thankful for my news as well. I am going to try to see that Living Proof movie. It sounds wonderful.
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Hi all - been a long time since I checked in. I am back at work now and when I get home, it's straight off to bed!
TonLee - I have had most of your SE's. Most seem to be subsiding although I definitely notice a cycle. By the time I a ready to go in for me next tx, I am feeling mostly back to normal. My MO referred me to a cardiologist who has me getting an ECHO with each herceptin treatment. He has me being very cautious, but I am mostly only symptomatic within the first week of tx. Although most heart problems are reversable, be aware that many chemo drugs along with Herceptin are very heart toxic. A friend of mine was 3 years out of chemo/herceptin before her heart problems started. She is fine now, may need a pacemaker - but it's still a little alarming. She is <50, healthy and active! I no longer get MUGA scans as my cardiologist doesn't feel they give him accurate information and he is uncomfortable with subjecting me to any more radiation than needed! I don't mind - I wasn't a fan either. My EF has not changed too much, but my left ventricle is becoming enlarged and I do have pressure, high rate and palpitations after tx.
Next week I get dose #14 - my last one was very non-eventful so I'm hoping the next one is the same...sometimes it seems they alternate between fine and problematic!
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Joya: I too had heard sometimes cancer shows up in an old breast injury, but my onco dismissed any thoughts of it. I will say that I did injure the breast that was cancerous many years ago while pregnant and nursing one of my babies.
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I too get stiff joint pain, although it does seem to be better the more I excercise.
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Joya, interesting thought, I had a fall (dog related) and injured the breast where the cancer turned up, just a few months before. I had also had calcifications taken from the same spot, but that was over 23 years ago, so I don't know how relevant that is.
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Joya don't know about a fall or bruise causing cancer but let me tell you my experience. Many years ago I took a course of Non Steroidal Anti Inflamatory Tablets. I'm sure you know that they can be lethal on some people's stomachs. Well before I had finished the course I jumped out of bed one night, ran to the toilet where I both vomited blood and passed blood via my anus. I was taken to the hospital where I received a blood transfusion all through the night. The tablets had given me a perforated ulcer. As you can see on my profile I was diagnosed with stomach cancer originally. I'm convinced that the seeds of my cancer were "sown and germinated" in that episode.
Marjie you and I are neck and neck in the race to be given Herceptin lol. both at #14. I received dose #14 on Thursday and all went well.
kay1963 those shrinkages are good results and I'm truly glad for you. Have left you a message on another thread.
Take care and enjoy your weekend ladies.
Frank
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Thanksgiving here in Canada and the weather is just GLORIOUS! The trees are changing and we are into a beautiful Indian Summer. Was out on the lake this morning and watched the sunrise - just a really feel-good weekend. My first chemo was one year ago yesterday and it's great to be feeling this good
Frank - how many Herceptin treatments are you getting? I'm done at 18.
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Marjie I have asked my Oncologist that question twice. Both times his answer was that as long as I was getting benefit from Herceptin I would be continuing with it. I also asked an Onc nurse who told me that they have a few women who have been getting a 3 weekly dose of Herceptin for a number of years! ! if that is the case with me then so be it. Compared to some of the women on here who are having awfull SEs I honestly feel blessed as I am having so little trouble with SEs.
Ladies those of you who have had SEs with your heart b/c of Herceptin - what were those SEs? Also what treatment did you get for the heart SEs?
Take care all
Frank
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Hi Frank! I've mentioned this on here before, but my EF (ejection fraction) on my MUGA scans (similar to echos) dropped from 65 to 51 while on Herceptin. My oncologist gave me a low dose blood pressure med (enalapril) to bring the number back up, and it worked. I don't have high blood pressure; this was only for my heart function. If that one didn't work, he said there were others that we could try, and I never had to skip an infusion of H. I haven't heard of others getting a blood pressure med to help their hearts, but I go to a teaching hospital and they are on top of all the latest research (I should also add that my onc never does anything unless there is good research showing it works--which is why he doesn't recommend vitamin supplements).
As for SEs from the lowered heart function, I didn't have any. I wouldn't have known if I wasn't having MUGA scans every 3 months.
Are you getting regular heart scans?
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Hello TMarina Yes I get an EchoCardioGram (ECG) every 3 months to monitor my heart and in particular to check my EF. Obviously I also get a CT Scan as well every 3 months. I had never heard of a MUGA until I found this website. I don't think that procedure is carried out here in NI. Sounds like a person who would assault you in the street ! LOL The Onc nurse told me that they would only start to worry if I had a drop of 10%age points between ECGs or if my EF went well below 50%. Apart from a few unwanted lessions on my liver LOL I would consider myself to be in good health and reasonably fit so I'm not too worried about my heart - maybe I'm in for a rude awakening.
Take care all.
Frank
I wrote above "...a few women who have been getting a 3 weekly dose of Herceptin" that's a bit confusing it should have read " a few women who are getting a dose of Herceptin every 3 weeks"
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Frank I am the same. Get Echos every 3 months to mnitor EF. So far it has stayed at 65. My hospital doesn't do MUGAs. They stopped just before I started treatment. I believe the EF is given by the Echo, whereas it is interpreted and estimated by the reader for the MUGA. At least that is what the Echo technician told me and told me that is the reason the hosptial switched to Echos instead of MUGAs. I think they still use MUGAs for some things, but not monitoring cardiac for chemo patients.
The echo did show something which changed, not EF ratio though. I forget what it was, but doc said not to worry about it. I am sure I would like it better to be back where it was, but then I don't want to have the cancer back that the chemo killed, so I'll put it out of my mind.
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joya - that's funny that you say that about the fall - the spot where my cancer was is the spot that was always bothersome when breast feeding my kids, that's where I get the plugged duct, pain, etc.. I wondered if there was scarring there that lead to the cancer. Something to think about.
Linda
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