Herceptin - Quick Side Effects Poll
Comments
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I get super tired the late afternoon/evening of my infusion - like fall asleep sitting up tired. I actually changed my infusion dates from Wednesdays to Tuesdays because I teach 1st grade religious education classes on Wed. nights and would have to miss every 3rd Wednesday because I could not keep my eyes open. By the next morning I'm just fine.
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Hello
pejkug3/achpurple I have the opposite from you. At first I didn't associate it with the Herceptin but I can see a pattern. I have my Herceptin infusion every 3rd Thursday and I always receive it over 30minutes. That night I will sleep for a couple of hours at most then waken up and find it difficult to get back to sleep. However on Friday night I'm back to normal.
notagain46 sorry to hear that your wife has had a recurrence. I have had 15 doses of Herceptin and next dose is 17th November. I have a few minor SEs - brittle nails, runny nose and the sleep "thing" I have just mentioned. Whilst some of the ladies on this thread are experiencing SEs which they attribute to Herceptin I think we would all agree that Herceptin does not give any where near the atrocious SEs of chemo. It is also a wonderous treatment which has turned around the prognosis of many many many 000s of women through out the world. I wish your wife well.
take care
Frank
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Herceptin definitely makes me tired....almost instantly, I can barely keep my eyes open and then after a hour or so nap, I can function. I notice that I am usually a little more tired over the next couple of days.
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I get benadryl pre-infusion. Had mine today. I slept as soon as I got home. Just fed the kids and am waiting for DH to get home so I can go to bed. My joints are so stiff and painful. Today the nurse told me it was residual neuropathy from the taxanes. Why would it be getting worse by the day? I am having BMX with a right mod radical on Monday. I can't stand up out of a chair. How am I going to get out of a bed without leg strength and unable to use my arms? Ugh.
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Southamptonmom, your joint stiffness sounds pretty similar to mine. And I've been done the taxanes since the end of July. And my nueropathy had completely cleared up. And now it is coming back at times. My onc thought it was the Herceptin. She said it is rare for it to get worse, that usually the joint aches start in the beginning of treatment and subside. Doesn't seem so rare from what people here say. Doesn't seem to be what's happening to me. I see her for Herceptin next Wednesday, will let you know what she says.
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Hi everyone,
Has anyone had heart problems from herceptin? I was supposed to be in surgery today getting a breast reduction and TExpander exchange /imlant. Instead it was cancelled 2 days ago due to cardioloigist stating not safe for surgery until I get further heart testing. My last MUGA showed a drop, nothing significant, but plastic surgeon said I should see a cardiologist. I had no previous heart problems. On Tuesday, stress echo showed changes. I asked the cardiologist if this could be due to Herceptin and he said "good question", meaning they are not sure. I have heard that heart damage is generally reversible if due to Herceptin. I now have 2 more cardiac tests next week and the onc temporarily stopped the Herceptin. I have had 7 months of Herceptin so far. Has anyone heard that Herceptin can be given less than one year. and still have good results? Apparently they are giving less than one year in Europe? This is a little scary! But I am trying not to think about it.
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ReadingMama - I am very sorry to hear about the new dx. How long until surgery? (((hugs))) to you.
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Notagain46 - I am sorry to hear about your wife's situation. I hate cancer. I don't know about the other medication but most likely your wife will not have too much trouble from the herceptin. It is an antibody to the HER2 protein on the surface of cancer cells. It latches on the the protein and signals the body's own immune system to attack those cells. I can cause some SEs but usually not like chemo. The biggest risk a a decrease in heart function and your wife will probably get ECHOs or MUGAs about every 3 months to monitor the heart. Best wishes to you and your wife.0
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serenitywisdom a well known possible side effect of Herceptin is that it can affect your heart in that it reduces your Ejection Fraction which is a measure of the amount of blood being pumped by your heart. Did you not get an EchoCardioGram or a MUGA before you started Herceptin. The test is then repeated every 3 months. It is my understanding that if you heart is affected you will be given some tablets to correct the problem and I also understand that any damage is not permanent and your heart recovers. I have heard of people receiving Herceptin for a year and for 2 years however I have heard of people being on it for years. I read recently about trials being carried out over a 6 month period. My Onc has said that I will be on it for as long as it is working.
I'm away for a week's vacation starting tomorrow so won't be posting for a while.
take care all.
Frank
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Have a great vacation Frank!0
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I had a baseline MUGA when I first started chemo in March and on TCH and it was normal until the last one. . Now with the last MUGA, that is when it dropped, although it was still within normal limits. However the stress echo I had last week and the EKG showed changes. So tomorrow I have a Myocardial Perfusion Test, they put tracer dye in your heart tp view the pumping action. Whatever, I feel totally powerless over this and just need to see what will happen. Have a wondeful vacation, Frank and hugs to everyone.
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Omaz, thank you and thanks for still checking in on this thread even after you are finished a while ago. It helps all of us.
Has tx #17 on Wed. and so far just a little joint aches. Last tx will be 11/29 and BMX surgery is 11/30. It's a little ironic of course that my last tx for the 1st cancer is the day before my BMX for the second cancer. I thought about stopping after #17, I know there are some women on this boards who had a horrible time with SEs ans stopped early, also I know some drs only do 17, not 18 tx, but anyone I am doing the last one and moving on from there.
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ReadingMama - Thanks! Good luck with your BMX, I hope everything goes smoothly and CONGRATs on finishing up herceptin, last one on the horizon - YAY!!0
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Had last herceptin today! Yay!!!!!
Christine0 -
Congrats on last herceptin Slainte!!0
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Yay Christine!!!
ReadingMama, kick some cancer butt! I had a BMX last Monday. Head over to the November Mastectomy 2011 thread and join us during your wait. http://community.breastcancer.org/forum/91/topic/776282
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Yay for last Herceptin Slainte!
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Congrats slainte! I am scared. Had my every three month echo yesterday and my ejection fraction went from 65 to 50 or 45 depending which way they measure it. So I am either very low normal ogr mild heart failure. Onc says not to worry, this happens somewhat frequently and they will get it back up. Seeing a cardiologist this week and trying not to worry.
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kay1963 - I have read that sometimes starting a blood pressure medicine is helpful when the ejection fraction goes down. I started at 73 and ended at 55. My docs said that 55 was acceptible.0
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Thanks omaz, the onc mentioned the cardiologist might give me a pill, not sure what kind. I have low blood pressure, so maybe something to increase it? I will let everyone know since it will probably be good info for someone at some point.
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kay1963: How many Herceptins have you had?
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9, with supposedly nine more to go
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Hi - I can't say for sure if this is an improvement from finishing herceptin but my gums have been sensitive ever since I started chemo last year and now, 3 months since the end of herceptin, they seem to be mostly back to normal. Just thought I'd share !
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hello sisters
back from my holiday which was most enjoyable.
I had dose #16 of herceptin yesterday and all went well and back into the office today. Whilst I was geting the Herceptin infusion the nurse was telling me that she has a few patients who suffer teribly from swollen joints and pain for a few days after the infusion even to the extent that they have great difficulty walking up the stairs. She also mentioned that a few of her patients suffer from neuropathy. I suffer from a few very very minor SEs but I'm wondering if those of you who do suffer SEs that maybe they are from the Herceptin.
Take care all and have a nice weekend.
Frank
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The onc told me the stiff joints are from herceptin. A couple of times it has been hard to get up steps. For me, getting down steps is worse though. I wish it was only for a few days after infusion, it starts a few days after and lasts until a few days before the next one. But the ejection fraction dropping to 45-50 from 65 is the most troubling side effect. I also had adriamycin which makes that more likely to happen. Saw the cardiologist yesterday, she said they see this happen a lot in patients with high blood pressure or other cardiac problems, but not in people like me. Said she likes to see people with high blood pressure because then she has something to target. I am getting a herceptin holiday from my next scheduled treatment, taking a low dose beta blocker and will get another echo in December just before my following scheduled herceptin. If all is okay will go back to normal schedule. She said her role is to be able to get me take the herceptin safely. She said 80% of the time, it resolves, you resume herceptin and it never happens again. I am so tired of being an "interesting"patient.
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Kaye- My oncologist told me last week I was her most "exciting patient." so I relate to your comment. I do not want to be exciting, I want to be boring. They stopped my herceptin and am now on beta blockers, baby aspirin and told me not to exercise. I am still walking albeit not up hill. I have no symptoms. I am trying to find out all I can about cariotoxicity and herceptin. The oncologist says she will hold the herceptin for about 2-3 cycles and then do cardiac tests again. I am wondering if my body is saying I have had enough herceptin- 7 months. How do they really know that everyone should take a year of herceptin?
Unless I do the angio gram which the cardiologist recommends to make sure I do not have coronary heart disease, how will I know if it is the herceptin that is really causing the heart changes. I don't like the idea of such an invasive test-catheter being inserted into heart.
Also I am now 4 months post TCH. My eyes are still watering but have slowed down quite a bit. They say taxotere can cause this. Has anyone had problems with continuing watery eyes? Also I do not seem to be losing any weight. I thought being off steroids would make a difference but so far no weight loss at all. Thanks for info and your thoughts. Best to everyone
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I did 72 weeks of herceptin every three weeks. Diarrehea, hair loss, nail loss, metal taste in my mouth during treatment. In the beginning did 8 rounds with taxotere and carboplatin as well. It was no picnic but with nuelasta I was able to finish all of it only had to hold a few rounds off for a few days due to blood counts.
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I did 72 weeks of herceptin every three weeks. Diarrehea, hair loss, nail loss, metal taste in my mouth during treatment. In the beginning did 8 rounds with taxotere and carboplatin as well. It was no picnic but with nuelasta I was able to finish all of it only had to hold a few rounds off for a few days due to blood counts.
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Usaf mom, Did you have hair loss the entire 72 weeks? My nails are detaching, and one infected. My MO swears it's all from the taxanes. They can last in your system for months. Today I am having a lot of difficulty walking. I'm starting to get scared. Going tomorrow to get the remaining 2 drains out, and I am going to ask about it...
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I took a low dose ACE inhibitor (not sure what the difference is between that and a beta blocker) for my decreased heart function (enalapril). Worked great, no side effects, and never had to skip an infusion. I also had Adriamycin, did not have high blood pressure or any other heart problem, and I never needed to see a cardiologist.
Hope those of you having heart trouble do as well on your med! Heart function decreases happen on H., and they rarely cause any permanent damage. If you are really concerned, definitely ask your onc how long you really need to stay on H. Other countries don't take it as long as we do.
Good luck to all of you!
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