Herceptin - Quick Side Effects Poll
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I had the TCH chemo regimen and my latest echo has my ejection fraction at 45, down from my initial 55 seven months ago. Herceptin was still a go today.
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My onc wouldn't give me my Herceptin when my ejection fraction was at 49!! He said 50 or more, or NO GO. He was quite adamant about it.
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Marm or Kathleen--did your oncs give you meds to bring it back up? I got the blood pressure med Enalapril when my EF dropped to 51. It's now back up over 60. I haven't had to miss any infusions.
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TMarina - Are you almost done with herceptin? I noticed that you were diagnosed 1 year ago.0
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Hey all,
What about headaches? Is this a common side effect? I am almost done Hecepton and have noticed mild headaches?
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TMarina, I haven't received any medicine to bring my ejection fraction up. My blood pressure is well in the normal range. But I do feel a bit run down at the moment and wonder if it is due to the ejection fraction being 45. Just had herceptin yesterday. I have gotten the mild headache.
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kathleen- you should ask your doc about taking the bp med. My bp is normal also, the med is given to me just to bring up my EF, and it has worked well. I'm on a very low dose and haven't had any problems with my bp dropping too low. Your EF is low enough that you might be feeling tired from it. Did your onc tell you what to watch for (shortness of breath, fatigue, fluid retention)? Are you getting your heart checked more often? I had to get MUGAs every 6 weeks unilt the EF came back up, and now I back to every 3 months. Make sure your onc knows what he's doing when it comes to your heart. He probably does
Omaz--I did AC first, then started herceptin with Taxol in Aug of last year, so I'll be done in Aug. of this year. Can't wait to be done!
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TMarina - I am done in Aug too! My rad onc said the port removal is easy too. Hopefully that will be in Aug as well. Then maybe I can sleep on my stomach again! I have 6 more herceptins to go.0 -
I was already on low-dose (5mg BP meds - family doc raised it to 10mg a few months back). Other than that, I wasn't given anything else. Am just on my way to onc now, after having echo last Friday. Today I find out if Herceptin treatments permanently suspended, or we go ahead and try to get in the last 6 of them.
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Good luck at the doc today marmalade!0
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Thinking of you today Marmalade! Hope all goes well!
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Just got back from the hospital - they did give me my treatment, and booked another one 3 weeks from now. So, I now have 13 under my belt! Onc said we will reassess after tx #15 and yet ANOTHER echocardiogram!
Thanks for the well wishes - this cancer train just never seems to run out of steam!
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Well I called today, and no-one is the least bit concerned over my 45 ejection fraction that I have spent all weekend obsessing about. I imagine there must be OTHER numbers on there that look good or it has to do with my original ejection fraction being 55. This is on the low end of normal to begin with...I have no idea what to do here, if I should get a new oncologist. I had a "I need a new oncologist" panic about two months ago. Now I am having it again. Urghhhh...I am very sorry to get off track on the original post here. This is about Herceptin side effects!
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Kathleen--it wouldn't hurt to get a 2nd opinion. You can do that with no obligation to switch oncs. It may be that because you started low, 45 is ok for you. But I think it's worth checking out, esp. if it is causing you stress. Maybe you can find someone in the Pittsburg area that has an onc they really like and can give you a recommendation?
Try not to stress too much, but do what you need to do so you are comfortable with your treatment.
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kathleen1966 I don't know if this will make you feel any better but they don't even check me. I had a MUGA before chemo. I'm now 11 weeks out from last chemo (6tx total) and have done 3 herceptin only. Seems as long as I don't have shortness of breathe they don't seem to be worried. I have been retaining fluid but they have me on a low dose diuretic.0
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These are SEs of possible heart problems from the Herceptin website:
You should contact your doctor immediately for any of the following:
- New onset or worsening shortness of breath
- Cough
- Swelling of the ankles/legs
- Swelling of the face
- Palpitations
- Weight gain of more than 5 pounds in 24 hours
- Dizziness or loss of consciousness
Standard protocol for Herceptin tx is a MUGA or Echo every 3 months (unless there are problems, then you should be monitored more frequently)
Lago, are you comfortable with that level of care? If the heart problems are caught early they are usually reversible. I guess if we have all the info, we need to make the decision for ourselves as to what we are comfortable with.
Take care ladies!
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TMarina I have no shortness of breath, no cough, no face swelling, no palpitations, no dizziness/loss of consciousness. They do ask every time the see me.
The weight gain swelling of legs and ankles was from the taxotere. Now that I'm on Anastrozole I think that might be doing it too. The diuretic seems to help but my legs are a bit bigger than usual. I can still do my 1 hour power walks or run to the bus without issue.
There is no rule that your must have a test every 3-6 months. I would think if I were having a real issue they would order the test. That's why they ask every time the see me. My onc isn't into the over testing. If something is off then she will test and continue to monitor. I'm OK with that.
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lago, that's important, that you are ok with what your onc does. At least they are asking you the right questions, and you know what to watch for.
There are some not-so-good oncs out there, which is why it's good to share info here!
Hope everyone is feeling ok tonight...
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Actually my onc's area of interest is HER2+ and is currently studying the drug T-DM1. She is well known in the field… and she truly does care about her patients. If she didn't ask questions then I would worry.
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NO SIDE EFFECTS FROM HERCEPTIN WHAT SO EVER--IT WAS A WALK IN THE PARK COMPARED TO THE CHEMO 0
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My ejection fraction was not high enough to take adramyacin (sp), and I decided to do just herceptin after radiation. While on herceptin for maybe 5 months, my score actually went up to 55. We checked again a few months later and it was still the same. I feel like the chemo before or during the herceptin causes the heart issues.
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It has been 5 weeks since my last herceptin. I am doing the happy dance.
I can walk upright and my disposition has improved 80%. The only pain I have is in my left wrist and elbow. I have even been able to do housework. Seems silly to get excited over doing house chores but, when I could not even do that it was depressing. I will see Onc. on the 28th and I can definitely tell him it was the herceptin. I have a spring in my step and a smile on my face. Can't ask for anything more. Hope everyone is doing ok. Thanks for this site it really helped me.isis- Hope you are doing OK
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It has been 5 weeks since my last herceptin. I am doing the happy dance.
I can walk upright and my disposition has improved 80%. The only pain I have is in my left wrist and elbow. I have even been able to do housework. Seems silly to get excited over doing house chores but, when I could not even do that it was depressing. I will see Onc. on the 28th and I can definitely tell him it was the herceptin. I have a spring in my step and a smile on my face. Can't ask for anything more. Hope everyone is doing ok. Thanks for this site it really helped me.isis- Hope you are doing OK
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Chele--good to hear from you. Glad to hear you are feeling so much better!
Julie--That's interesting! My EF did drop a little after Adriamycin, and then dropped more after starting Herceptin.
dottie--Yay to no SEs! It's definitely easier than chemo for me too!
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Thanks Tina
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I've had a lingering prickly feeling in my lungs. Also a tickle. It seems to be what's left of my cough. Anyone else experience lung related SEs? My onc never did give me my last two echo scores; just said that my ejection fraction was improving, moving upwards toward 55%. (The last score he gave me was nine months before and it had dropped to 51%.)
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Good morning, Ladies. I read your posts with great interest since I am nearly 8 months out from chemo and await Herceptin #15 in a few days. I am experiencing incredible stiffness, joint pain and fatigue and wonder if is residual from chemo and radiation or just part of the SEs of Herceptin? My ejection fraction has steadily decreased since my first MUGA 10 months ago. But so far it is hovering at 50% so the Herceptin has never been delayed. I seem to feel as though I'm wrung out the first week or 10 days after the Herceptin IV and then get to feeling a bit more 'chipper' and capable just before the next IV is due. Almost like how I felt during the full chemo tx. I am grateful for the opportunity to receive Herceptin, but am deflated when I feel so crappy all these months later. Am hoping that once I am done with IV #17 in June that the pain and stiffness will subside and my stamina will return. Right now I have to push myself hard to be up and active for even 10 hrs a day. Any thoughts?
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Bon, your posting today confirms exactly what I am experiencing as I too go into #15 next Wednesday. Yesterday I was (like last time around day 10 to 11) flattened. Unable to get out of bed all day. I couldn't eat either all I could do was drink water. True, there are complications because I have to have a root canal today--so I do have an infection and am taking antibotics for that but I checked with my onc and he said that was alright. Last time around I wrote on this forum about my difficulties with Herceptin but for the most part most women say their SE's are minimal. This morning I am marginally better but have to go to the endodontist anyway (a friend is taking me). When I get this bad I want to quit but then, just as you said Bon, I seem to rally and feel okay and go for another treatment. After yesterday, however, I am just plain afraid to face another treatment knowing what is in store for me. It is really frightening when it happens. I feel like I'm dying. I said this before and I say it again. It is really scary. Especially since I am all alone. Personally, and this is an uneducated opinion, I think the Herceptin is cummulative and that each session just makes me sicker. It occured to me that perhaps I'm O.D. on it at this point.
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Oh, Isis....I am so sorry that your suffering so much. That root canal isn't helping matters and that alone would be enough to deal with. But the Herceptin SEs are something I'm becoming more aware of each time I have a tx. The bags under my eyes are huge and dark and I've had to resort to lots of concealer! I am just so incredibly tired and stiff and just plain uncomfortable. I am embarrassed when I go to get up from a chair or out of my car. I just can't straighten up or get moving for a few minutes and I am in a lot of pain. Just trying to take one aspirin a day and soak in a hot bath. But I was encouraged when I read one post on this board by chelemybell who said that 5 weeks out from her last Herceptin she is able to walk upright and her disposition has improved 80%. That gives me hope that by sometime in July I will have better days. I'll pray that works out for you, too! I am happy for those who have not found Herceptin to be debilitating but did speak with a very active and upbeat PhD nurse here who worked all through chemo and radiation but had to stop working during those last months of just Herceptin. It may be the cumulative effects of chemo, radiation and Herceptin, but something is going on and I need it to stop! There is another board on this site called something like 'After Herceptin- did the side effects go away' and others on there had varying degrees of aches and pains, too. Some thought that three to four months after the last Herceptin should do the trick. So maybe then my nails will stop spliting and peeling vertically and my hair will grow thicker and faster. Both of those are known issues with Herceptin, for sure. Still hoping that July is our month to start feeling better! (And it's annoying that to the outsiders I look OK. They all think I'm over the treatments, over the cancer, life is la-de-da again. I try to remind myself of the Ricardo Lamas <via Billy Crystal> saying "it is better to look good than to feel good!") Try to keep your spirits up Isis. And thank you for letting me know I'm not alone in this.
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Isis and Bon I am feeling it too and am going for number 12 tomorrow . So stiff! I won't be done until Aug so you two will have to let me know.
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