Herceptin - Quick Side Effects Poll
Comments
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I've mentioned this earlier, but wanted to reiterate, that I also had aches and pains. For me, the pain was mostly in my back and neck. I was only taking Herceptin, no other meds of any kind (only a single multi-vitamin, which I still take), and did not have radiation. Pain went away when Herceptin stopped. Only symptom that is still with me is this cough (though not nearly as pronounced).
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Hi all. I saw my BS this week and he didn't seem at all surprised that I'm having pain while on Herceptin. But he's so thrilled that I wasn't triple-negative and can get Herceptin, he doesn't sympathize too much. He really thinks that Herceptin is a miracle drug. So does the RO. Both of them described how they saw patients whom they did not believe would do well and might not make it through chemo, much less any of the rest. And that the Herceptin seemed to make all the difference for those women. Since then I've even read about efforts to study to give Herceptin in women who are not HER2+ because it's such a magical therapy. (Yep, magic. Now you can walk.without pain. Now you can't. Magic.) Anyway, I will get the rest of the Herceptin IVs and hope that by the fall I will be able to stand and walk erect.0
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Bon - Magic! I am hoping to stick it out as well. 5 more. Have you noticed that there is a lot of counting in breast cancer treatment???!0
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Omaz...yes, I used to have the 'count-up' on the calendar and would say "I get to have Herceptin number 6 today." And then "I get to have Herceptin number 7 today." But it soon enough became "Herceptin Number 11 down, only 6 to go." Still glad to be able to receive it. Just wish I felt better. I need to learn patience.0
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I will be getting Herceptin for as long as it continues to kick my cancers ass! They told me at my dx, that I have a very aggressive form of cancer, but I also have a very treatable type of cancer thanks to the Herceptin. Everyone is different, I for one ache like crazy and some days can barely walk because the bottoms of my feet are so bad, but that Herceptin is keeping that tumor on my liver at bay, so I'll keep fighting right along with it! I hope you all are able to hang in there, it really is a miracle drug! Stay strong!
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I also find that exercise helps with the stiffness. If I miss too many sessions at the gym I can hardly walk, not that I feel like going when I am so stiff but it soon gets better. Number 15 next week. After my nose bleeds, black eye tiredness and constantly runny nose last time I await with trepidation the SE's from the next one.
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Ado... On Thursday one of my associates in the office asked if I had a black eye! I didn't but the dark circles under my eyes are now all around my eyes so my eyelids and brow bone area appears really dark. I tried to use concealer to lighten it up but then I just looked even scarier. Luckily I am in Florida where sunglasses are a requirement and can hide a multitude of sins.
Still need to drag that bike in the house and see if I can use it to get in some exercise and regain some strength. Have gained weight over the course of the bc tx and hope I can get some of it off whenever I start to feel human again.
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I got black around my eyes at the same time as my brows and lashes went bye-bye. It was quite the look and as Bon said, trying to use concealer just made it worse.
Exercise does seem to help the stiffness but man oh man, it can be hard to motivate yourself when you are sore!!
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I was using concealer before chemo under my eyes. Most of what's out there is too thick and brings even more attention to the wrinkles. I find that first putting on eye mosturizer just before the concealer helps. I use one that is very light weight from Sophora:
Givenchy Mister Light Instant Light Corrective Pen.0 -
Thanks Bon and Marjie it is such a shock isn't it to look in the mirror and see black eyes or darkness around them. Luckily mine disappeared before my sons wedding last Thursday and all went really well. They got engaged just at the time of my diagnosis and I was convinced at the time that I would not be at the wedding. I am so pleased I was and I felt great and I danced the night away. Must be the spinning ! Get that bike out ! My sister showed me some photos from this time last year I was huge and very puffy. With the spinning and eating smaller portions I've lost 14 pounds. Next Herceptin on thursday I wonder what that will bring .
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One week tomorrow since I stopped Herceptin and I'm sorry to say that I feel awful. Just spoke to my onc and he said that Herceptin wasn't causing what I am calling my "withdrawal" symptoms which are chills, serious nausea, extreme tiredness, and lack of stregnth to name a few. It's the nausea that I can't cope with. I have been taking tamoxifen so I stopped that in order to try to isolate what is causing me such distress. I have also checked any "withdrawal" complaints I could find on the internet and found some describing mine--not many but some. It seems anathema to my onc to even think that a Herceptin withdrawal could be happening to me. Could it be caused by tamoxifen and if so why did these symptoms come when I stopped Herceptin and not before?
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isis - Maybe you are coming down with a virus?0
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Glad I found this board! My oncologist is wonderful except when it comes to believing me about the Herceptin side effects. I am so achey and tired it's starting to drive me crazy. Feeling good after Chemo and then Rads was short lived. Herceptin just keeps me down. I know it's good for me and I need it, but how can I last through August? My house hasn't been cleaned in forever. I did manage to make it through the Kid Rock Cruise and have a great time, but had to spend days after recovering. That was my celebration to finishing Chemo and Rads. I had no idea Herceptin would be like this. Kind of annoying that the docs don't prepare us.
Thank you ladies for letting me know that I'm not crazy!
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Going in for Herceptin #2 today _ wish me luck!
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hello
i'm new to this. i'm probably one of the very few males in here but i hope you will allow me to join in. briefly - diagnosed with stomach cancer 27 february 2008, got chemo, surgery and more chemo. was given the all clear in december 2008 and felt perfectly well since. you can imagine my shock and horror when quite by accident on 2 august 2011 (yes i remember the dates exactly, could even tell you what time of the day it was ) it was discovered that very quietly but very aggressively it had come back and was in my liver. was immeadiately started on 24 weeks of chemo and as the cancer was protein receptive (don't ask as i don't know what that means) oncologist recommended herceptin. he had to fight a war of attrition with the health trust to be allowed to give me the herceptin. after 5 months we got the go-ahead after getting my MP involved and threating the trust with legal action. I have had 6 doses of herceptin and will be receiving it for the foreseeable future. go every 3rd wednesday. nurse takes blood sample and usual obs. i then see the oncologist and if every thing is ok get the herceptin that afternoon via IV. it takes only 30 minutes but i then have to wait for an hour and half being observed before i'm allowed home. all very painless but i have to have an ECG every 3 months. oncologist said that the only side effect might be a bit of heart probs.
i didn't think i had any side effects till i read the posts on here. during the chemo amoungst other things my hair became very thin and lifeless, skin on my hands and feet dried and cracked - my hands sometimes bleed, so deep were the cracks. my nails became very brittle and my nose was runny. i thought that all that would go away as my chemo ended in the middle of february. however my nose is still a bit runny, hair still lifeless and nails still brittle - don't laugh at me girls but i have even started to put cuticle cream on my nails to see if the will strengthen. however i have had no weight probs. actually suprisingly during the chemo i didn't lose any weight. i have had no aches or pains with the herceptin.
as i said girls i hope you don't mind a male intrusion but i don't know anyone else who is receiving herceptin and it good to hear the comments of others who are receiving it. i am the first person in N Ireland who is receiving herceptin who has not had breast cancer and generally by implication the first male .
take care and chat soon
Frankh
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Michon, I have just finished reading my diary (Jan-May) of my experiences with the 21 day cycles after Herceptin infusion. I hope you fair better than I did. In rereading what I wrote I have had a very tough time of it. Whether you go that route remains to be seen. (Hopefully, things will settle down for you.) The tiredness you feel is standard fare for Herceptin--I was wiped by it and managed only 14 treatments. It has left me wondering whether there is a proper weight-related dose? I am very thin weighing in at about 113 lbs. for 5'6" frame. I asked my Onc but he didn't seem to think so. The way things are going it will take me a long time to recover my strength.I am just as sick today as I was yesterday but quite frankly I think it may be the tamoxifen.
Frankh I find it fascinating to learn that you may be the first person in N. Ireland (and perhaps the world?) to be receiving Herceptin although I'm not quite clear about why it can be used in your case which you write is "protein receptive". Do you think you can learn more about this and let us know on the forum?
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I know that herceptin is used for different cancers but it is often turned down for coverage. There is a man in my cancer centre who was refused herceptin coverage for cancer in his esophagus which has now mets to the brain and is so unfortunate for him. It was on the news recently.
Frankh - I think it's great that you posted here! Always good to share information.
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Welcome Frank! Yes, heart problems are a major side effect. They should give you a test either EKG or a MUGA scan before starting and every 3 months throughout to check your heart function.
Speaking of that, anyone had their doctor discontinue the MUGA scans? I've had 3. 67, 66 and 62. Three months have passed and I'm ready for #4, but my Oncologist said you're fine, I'm not worried let's not do any more MUGA's. Really? Kinda scares me since I went down to 62 last time.
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My MUGA's are 65,65, and 62 on the last one. It also showed that there was some enlargement of the left ventricle (wtf does THAT mean???) so I have another one next week and my onc mentioned that she was going to have me see a cardiologist as well but I haven't heard anything yet. The next MUGA is right before my next herceptin. I was speaking with a lady who had related heart trouble show up a year after she was finished with the herceptin....that's scary too!
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Has anyone had an Echo while on Rads? I'm scheduled for my every 3 month Echo next week, but it doesn't seem like a good idea to have someone pushing down on my skin while its tender during rads. I'm right in the middle of Rads though, so would have to wait more than a month more for the Echo.l
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Does anyone know the cost difference between the ECHO and the MUGA? I get the MUGA and it is thousands of dollars.
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hello
Isis 818 Herceptin was developed for the treatment of breast cancer, however in certain limited circumstances it can be used in metastasised gastric cancer which mine was and where the tumours are HER2 positive which I thinks also means protein receptive. There is a document called "Trastuzumab for the treatment of HER2-positive metastatic gastric cancer" and the first paragraphs from it are :- 1 Guidance1.1 Trastuzumab, in combination with cisplatin and capecitabine or 5-fluorouracil, is recommended as an option for the treatment of people with human epidermal growth factor receptor 2 (HER2)-positive metastatic adenocarcinoma of the stomach or gastro-oesophageal junction who:
have not received prior treatment for their metastatic disease and
have tumours expressing high levels of HER2 as defined by a positive immunohistochemistry score of 3 (IHC3 positive).
1.2 People who are currently receiving treatment with trastuzumab for HER2-positive metastatic gastric cancer who do not meet the criteria in 1.1 should have the option to continue treatment until they and their clinicians consider it appropriate to stop.
The guidance is written by NICE = National Instute for Health and Clinical Excellence. This is the body which approves drugs for use in treatments in the national health service in the UK. This is totally different from approving drugs for use by humans after testing. As my onc said I ticked all the boxes and that's why I was recommended Herceptin. The fact that it was NICE approved strengthened our case in the fight with the health trust. I will bet that the trust won't admit it but I will bet that their initial refusals were based on cost.
Just to clarify something, I am the first male in NI to receive it. When I went to get the 1st dose nurses thought that the files had been mixed up as they were expecting a female ! ! ! I'm sure there are men elsewhere being treated with it.
There is a book written about the development of herceptin which I have at home and will give the full title of it next time. (I'm in the office at present doing a little bit of skiving - naughty me )
Thank you all for your welcomes. Michon I got an ECG before starting on the herceptin and will get one every 3 months. Already have the appointment which is 14 June. My next dose of herceptin is next Wednesday 11 May.
take care
Frank
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Welcome Frank - Thanks for joining us!0
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Welcome Frank.
michcon I had a MUGA before I started chemo. I haven't had another. I've completed 6 TCH in January and now just doing herecptin. It appears as long as I don't complain of shortness of breath they don't seem too concerned.
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Wow, I didn't know all that about other possible uses for Herceptin. I was under the impression that Her2+ expression was only found in breast cancers. But upon reflection I recalled that I had read about Herceptin's development in "The Emperor of all Maladies" by Siddhartha Murkerjee where he points out that its discoverers had a very potent drug "answer" and had to look around to find the question for it. What could they use it for? They chose breast cancer tumours to try it on because they had so many stored samples available to them. It makes sense that Herceptin could also work on other receptive-to-it cancers. I'm thrilled to hear that. So many more people will benefit from it. And, yes, you're dead on Frankh. It's a question of money. Herceptin is very expensive and I know that here in Canada some people have had to fight battles with the governing medical body to get it. One woman succeeded in getting the rule governing how large a tumour could be reversed. But only in her case. The Government says they will now consider each case individually.
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Isis I believe the 1st human tests (20 women) were done on breast & ovarian but then they dropped ovarian because they thought they would get better results with breast cancer.0
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Hi all. I found this brief explanation by a cardiologist of MUGA vs. echo:
An echocardiogram (echo) uses ultrasound waves to image the contractions of the wall of the heart. It is a two dimensional image of a 3 dimensional object. A multigated analysis (MUGA) scan is a nuclear scan that measures the changes in nuclear counts in the heart over a period of time. Normal ejection fraction is between 50% to 75%.
Of the two tests, echo is more subjective and is more dependent upon the skill of the individual doing the study and the experience of the reader. A MUGA scan is less open to error although they can still occur.
As an aside, I had an stress echo in December that showed abnormalities so had to undergo a heart catheterization. They measured my ejection fraction directly at that time as 50%. Two previous MUGAs has read 63% and 58%. Last month I had another MUGA and the ejection fraction they quoted was 62%. Seems way too good for how I feel.
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Also found a scientific notation referencing an Italian study of Herceptin in conjunction with chemotherapy for late-stage gastric cancers and another mention of it being used for postmenopausal women with something called Uterine serous carcinoma.
According to Wikipedia, it's only officially FDA approved here for use in HER2+ breast cancer and: Trastuzumab is also controversial because of its cost, as much as $100,000 per year,and while certain private insurance companies in the U.S. and government health care systems in Canada, the U.K. and elsewhere have refused to pay for trastuzumab for certain patients, some companies have since accepted trastuzumab treatment as a covered preventative treatment.
Both my breast surgeon and radiation oncologist think Herceptin is a true miracle drug. All too often they sent patients off to the medical oncologist, believing the dx was grim and that they would never see that person again. And then, bingo, there she was, standing back in front of them, months or years later, with no evidence of disease. As much as Herceptin is whipping my butt, I am thrilled to be able to receive it.
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Bon, thanks for the defs of Echo vs. Muga. I wondered since I'm one of the few who seems to get Echos. I am getting the Echos at my cardiologist so it is the same person reading it every time, which my MO agreed was a great idea.
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My onc sends me for MUGAs, but if I see the cardiologist, she says he will do an ECHO to back up the results from the MUGA. She mentioned that sometimes you can get a "bad read" on the MUGA scans. I'm feeling pretty good - no shortness of breath but I do have extreme exhaustion some days and if there's anything showing up in and around my heart, I would just like it caught now rather than later. Hoping I have nothing to worry about though.
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