Herceptin - Quick Side Effects Poll
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I am a participant of the SOLD study (Synergism or Long duration) I was randomized to an initial period of 3 Taxotere+3 Herceptin followed by 3 FEC and finally 14 more Herceptin. Treatment every third week the whole period. The other arm in the study is identical treatment in the initial phase but without the final 14 Herceptin treatments.
This is a very important study. Reports on side effects of Herceptin are frequent, For early breastcancer adjuvant treatment should be effective but we must also consider quality of life during and after treatment.
Dripping of the nose may not impress the oncs but, a bleeding nose and nasal crusts deprives me my good night sleep, and the MUGAs and pulmonary side effects might be fatal. It is a very potent drug. But we still don´t know how to use it at least not in the early stages of breast cancer
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CinCan - I was shocked to say the least that they were telling me this, as I felt really as good as I did before the whole treatment process started (as good as I can be with fibromyalgia). After they told me this and I started having all of the tests, I did feel more fatigued with exertion but not really short of breath, BUT this could be due to the lisinoprol, bisprolol or even the tamoxifen they have added since January 20 when i was told me ejection fraction was half of what it should be. Also, I have no idea how many of my symptoms now are exacerbated by my anxiety and nervousness with having to stop the herceptin.
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Hooray for this thread. The thing I like about this site is finding out it isn't "just me". I have had 13 Herceptin infusions every three weeks starting half way through chemo and during radiation. I am also on Femara and can't quite figure out what is causing what. It is comforting to know that the runny/bloody nose is kind of normal. My sore thumb joint might also be from the Herceptin. I'd hate to think it is from using the computer mouse too much. My achy other joints and bit of ongoing fatigue are explained too. Nevertheless, recently I just decided and within ten days was in the air for a trip to the UK and was delighted to have managed it all quite well. And by the start of summer, Herceptin will be done. There's hope!
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Interesting about the SOLD study! Where is this study being done? How long has it been going on for? You are right, this could really change the way early HER2+ treatments go!
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Her2 Postive / Herceptin Side effects
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thanks. reassuring to hear that you also have the bad taste although must say only had it once but it lasted - on and off - for about two weeks. This last time had hardly any symptoms, just the usual less stamina for a few days following treatment.
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interesting to hear you also have that bad taste in your mouth although i only had it once
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I've had 10 out of 17 Herceptin treatments every 3 weeks. S/E are dry cough, and thin cracking finger and toe nalls. Skin around finger nails is constantly splitting and cracking. My finger tips get very sore and I've been going through the bandaids like crazy. It takes forever to heal then they split again. They bleed easily and the blood seems kind of watery. Then I'm off to the bathroom for more bandaids. Constant drippy nose. Blood work has been good. I get Echo's instead of Muga scans. Numbers are down a bit but not too bad. I'm also taking Effexor for severe hot flashes (chemopause) and Zopiclone for insomnia. I will be happy when this is over end of July. Recent mammogram was clear! Yeah.
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The SOLD study has 3000 participants all over the world, in Sweden about 350. Inclusion started Jan 2007. It is based on the interesting results of a small Finnish study published 2006 in The New England Journal of Medicine. 232 women with HER2 pos high risk node-negative cancer were randomized to recieve/ or not to recieve nine weekly trastuzumab infusions.
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Hi,has any one gained alot of weight while on hereceptin.I have and have decided to try and diet but want to know if it will help??? And does the weight come off again once the treatment has stoped.I have gained around 1 and a half stone and dont know what to do??? any answers.....
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I have gained almost 20 lbs since starting this crazy ride, the last 10 since being on Herceptin and tamoxifen. I have cut carbs abd processed food by more than 50% and increased veggie/fruit intake and still continue to gain weight...I am so frustrated...I know I need to be more active but shouldn't I see some results with diet alone?
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I find it very frustating,you dont know what to do for the best do you.Im also trying to diet but i continue to put the weight on.I try and do exercise but get breathless very quick,thats due to the treatment too,im also having problems with my heart while on herceptin. I have echos every 2 months now and at one point i had droped to 45.very scary
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trisha - how much is 1 and a half stone? I, too, am battling with weight gain. My Onc told me that 80% of women with BC gain weight not lose weight with Tx. My Onc nurse told me to be careful because she sees the most weight gain with women on Herceptin. Because it is a year long treatment, the gradual weight gain ends up being considerable. Her exact words to me were "every time they come in for a tx they get bigger and bigger". The worst part is people think that you lose weight with cancer, well that's a myth for BC. I hate it when they ask me if I am losing weight.
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Hi, CinCan!
They told me to be aware of shortness of breath, not being able to walk far without shortness of breath, tightness in the chest, etc. -- so what sounds like normal heart problem symptoms. Ask your oncologist / oncology nurse for specific symptoms to be aware of so you can be assured that your heart is really okay.
I didn't notice any symptoms at the time. I did a little after that when I tried to go on a walk after not walking or exercising for a long time. I started around the first side of the block and could feel that shortness of breath and a little tightness in my chest. Wow! What a shock! But I'm not experiencing any of that now. They did tell me not to do a lot of exercise so that it would really press my capacity or stress my heart.
Praying for you!
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Wow, sorry to hear y'all have gained weight too.
Rats! I've gained 10-15 pounds since I started treatment, and they say not to try to lose weight while on radiation. EEK!0 -
Hi ladies, Anyone have elevated liver levels with Herceptin???
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Hi CinCin,1 and a half stone is 21 pound,i have still got 6 more infusions of herceptin to go and the weight keeps piling on.I dont like it one bit but you need the treatment dont you,its a catch 22 isnt it.
Hi Bestillandlisten,i too have shortness of breath and not being able to walk for,its horrible and you feel so useless.
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I just had my end of chemo/radiation MUGA scan and my heart function went from 63% to 59% The only thing that makes me nervous about that is I hadn't had herceptin for the 6 weeks during radiation and my heart might have had a chance to rebound a bit. That 59% might have actuallly be lower if done a few weeks earlier I've still got 5 months to go on herceptin.
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weety - so you didn't have Herceptin during your radiation....was that option offered to you, did your Onc give you a reason? Hmmm....they will be continue with the Herceptin Infusions during my rads and that's when they switch to the triple dose.
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CinCan, I got 3 different opinions (my onc and 2 rad oncs) and 2 wanted me to postpone it, and one said it didn't matter. I think the reason is I was getting the radiation on the left chest wall (I had a mastectomy) and they didn't want to take any extra chances with the heart so close to the radiation field. I got the herceptin dose the week before I started, so really I just missed the one dose in the middle of rads. I had the next dose the week after finishing. I think the mastectomy issue played into this decision as well since there was no breast tissue left--just the chest wall. I did a lot of asking on this site, and it seems that most women continue herceptin during rads. I might have been an exception. I think there just is still so much they don't know about herceptin.
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Weety... Congrats on completing your chemo and rads and only 5 months of Herceptin left. I'm so glad to be done with Chemo and now onto RADS. I have my first Rad Onc appointment this Thursday and I plan to ask her about the Herceptin during Rads. Sounds to me like they were playing it safe with you... makes sense to me.
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My mum is diagnosed with invasive intraductal carcinoma, tumour (2.8cm) and eight nodes have been removed. Surrounding tissue, nodes and bone scan are all clear. She is 65 and healthy. Results of tests are: HER2 (3+), ER negative, PR negative.
She had the first chemotherapy TC (toxoter and carboplatin) four weeks ago. one of the doctors suggests to start Herceptin as well.
I wonder what is the chance of reoccurrence in her case, if she refuses to get chemotherapy?
How much is the survival rate, or recurrence rate, if she gets TCH, receive Herceptin alone, or doing nothing (stop medication altogether)?
I understand the answer may not be definite, but any idea would be of great help.
With you all health,0 -
Ali - I sent you a PM (private message) - look at the top tool bar to see it.
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WOW!!! I'm kind of glad that I found this board. My heart was effected by both A/C and Herceptin. After I finished A/C x 4, we held off on starting Herceptin for until my third Taxol treatment. Then herceptin was discontinued after about 8 treatments when it was discovered from the ECHO that my heart function had dropped even more to 45%-50% in December. What's incredible is that we sometimes really don't know which circumstance is causing the side effects. I experienced the shortness of breath, so much that I ended up in the ER twice. I saw a pulmonologist and he said I had a slightly moderate case of adult onset asthma. I was put on Avesto. I never believed that diagnosis but just couldn't pin point another source. Another ECHO in March and heart function is 'normal'. With chemo (1/7) and rads (3/9) finished, NOW onc wants to restart Herceptin. I really have mixed feelings about this. At the same time I want to do all that I can to....
I was once of those people who had very little side effects from chemo - no nausea, very little fatigue, etc. I sure hope that I handle the herceptin alone just as well along with the s/e of tamoxifen
I have just started Vit. D, Calcium and mutivitiman for 50+ women to help the joint pain among other things.Any words of wisdom??
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BlessedOne,
In most cases, heart damage from herceptin is reversible with time. AC damage to the heart, unfortunately, is usually not reversible. So, in your case, since your heart function went back to normal, indicating it may have been the combination of the herceptin/adriamycin, I would definately consider restarting the herceptin alone now and letting your heart scans guide the decision as to whether or not to continue. I am sure they will be monitoring your heart much more closely than the average herceptin user because of your past history.
As I keep seeing on this site, and my onc keeps telling me the same--no one really knows how long to give herceptin in the treatment of early stage breast cancer. It's still pretty much a guess at this point until they get the data from the current studies being done with different time frames. The first studies, in which we do have data that herceptin is extremely effective, used herceptin for 1 yr. So that's what we get. Period. Until something shows otherwise. So, try the herceptin again. See how your heart does. Go from there. If you even get a few more doses in, that's still a few more than what you've had today! Also, ask if it would be less hard on your heart if you did the weekly, smaller doses rather than the every 3 week dosages. I don't know that answer, but assuming it would be less toxic in the smaller dosages.
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I had six treatments of Taxotere, Carboplatin, and Herceptin, and now I have he Herceptin infusion every three weeks. While on the chemo treatments, I had the usual side effects such as low blood count, fatigue, hair loss, and other complications. Now on the Herceptin, I am losing my eybrows and eyelashes, my nails are brittle and the neuropathy (numbness in my fingers and toes) is so annoying. I am also short of breath at times and can get pretty tired.
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phumphrey - I think that some of your side effects are left over from the Taxotere - it takes some time to get out of your system. Now that I am 6 months out from Taxotere and still on Herceptin, the symptoms are much better. Nails are still brittle but eyebrows and eyelashes are back and I have gone wigless since just after Christmas. My energy level is much better although not yet magnificent. It was enough to take a trip to the UK and another to Florida (and I haven't travelled like that since the 70s). I hope you feel stronger soon.0
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lassie & phumphrey - Did your nails ever hurt? My nails really hurt....especially when I type and my nail tips hit the keyboard. They are not brittle nor do I have neuropathy. Mine is the opposite... they ache. I, too, finished Taxotere & Carboplatin 3 weeks ago.... will be starting the 3 week cycle on Herceptin this Friday. I'm hoping this SE is not from the Herceptin.... I would hate for them to be this painful all year:(
I am, also, starting to lose my eyebrows and eyelashes...I lost all of my hair from the rest of my body along time ago. I don't understand why now am I barely losing my eyebrows and eyelashes...I was feeling so lucky that I hadn't lost them:(
phumphrey - be sure to mention to your Onc about the shortness of breath. The Herceptin may be affecting your heart. My Onc has me on Lopressor, a beta blocker, to protect my heart from the Herceptin.
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Phoenixs mom- I had similar problems with Herceptin. I went from 72 down to 43. My ejection fraction went back up quickly with a little help from something prescribed to me by my cardiologist- coreg. I think you should consult with your physician or cardiologist and get that ejection fraction back up as soon as possible. I am back to normal and no longer take the maximum dose a day- just a very low dose. Best of luck!
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Dear Trisha238- Get to your cardiologist as soon as possible so he can put you on something to help your heart through the Herceptin treatment. I was only able to take 11 doses of Herceptin as my ejection fraction had gone down so much. My cardiologist should have had me on something- needless to say, I switched cardiologists.
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