Herceptin - Quick Side Effects Poll
Comments
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I had 2 echos during radiation. Because my EF was just under 50, my onc insisted I have an echo before every Herceptin treatment. Needless to say, sometimes I didn't get the H at all, but I am now playing catch-up. I didn't find it too bad getting the echos - the techs usually ask ahead of time where you are in your treatment, and of course, they can see the red skin, so they try to be extra careful not to cause discomfort.
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With a MUGA, they have to draw blood, mix it with radioactive isotopes and then re-inject it. That's the downfall of the scan if you are like me and don't have any veins left...likely on to my feet next time...uuuggh! They won't use my port for any nuclear stuff...probably a good thing. I think I would be okay if they wanted to switch to ECHOs.
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marm, thanks for that. My RO nurse wasn't there when I went for Rads today and the covering MO nurse didn't call me back, so I didn't get to talk to any of the nurses about it today. The Rad tech thought I should go ahead and just ask them to be gentle. It's not till Monday, so I'll try to get ahold of someone tomorrow.
marjie - I think that is why my RO sent my for the Echos as we were talking about how much I dislike needles!
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Hello all
There is a book called "Her-2 The making of Herceptin, a revolutionary treatment for breast cancer." ISBN number 0-679-45702-X, you could probably get it 2nd hand on Amazon. I have it and it is a very interesting read. Written by Robert Bazell it charts the development of Herceptin. An Onc called Dr Slamon from UCLA was very much to the fore in developing Herceptin. At the start of last November he (Dr S) was in Ireland and was giving a talk one night in a hotel in Dublin. I went down to the talk which was most interesting and was very much in lay person's terms. Naturally most of the audience were female. I had the pleasure of having a quick chat with him and as we were both staying in the same hotel exchanged pleasantries the folowing morning. There was also a very good article in one of the Irish papers about him which I have electronically carefully stored away, so carefully I can't remember where I stored it ! ! I think my brain is well and truly addled from drinking too many pints of the black stuff lol.
Once again thank you for your welcomes. Take care all.
Frank
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Frank...there was also a movie that debuted in 2008 called "Living Proof" starring Harry Connick Jr. as Dr.Slamon. Netflix has it.
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Hello all
I go for dose #7 tomorrow (Wednesday). I still have a bit of a runny nose, brittle nails and my hair is still straight and a bit lifeless. Don't know if that is a hangover from the chemo which ended mid February or if the herceptin is contributing. However I have no aches or pains and no weight gain problems. In fact after the stomach surgery and the end of the chemo in 2008 I had to work with a dietician to get the weight back on. There has never been a history of dieting in my family.
Have received 2 appointment letters from hospital. Next CT Scan is 2nd June and next ECG is 14 June.
Bon what is Netflix?
Take care all and will let you know how I got on with dose number 7.
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So far so good with dose 15. A slight runny nose and quite tired but no black eyes !
Good to hear from you Frankh hope all goes well with number 7. I found the info on Herceptin really interesting.
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Frank... My apologies for not explaining about Netflix. It is a comsny that sends DVDs through the mail or over the Internet. You pay a monthly fee and order the movies you want to see. I only mentioned it in case others here had not seen the movie 'Living Proof' and wanted to find it. For you in Ireland or others in Australia or Israel, well, it probably isn't going to be easy to find because I think it was a made-for-TV movie.
My doctors said it would be 6 months before the effects of chemo and radiation wore off. Well it is now just 6 months and I feel like I've been hit by a truck. I am actually felling less well than I did during all of the treatments. The symptoms are different:, more pronounced, and making it difficult for me to live normally. Tomorrow is either #15 or 16 of Herceptin. Either count means I am done with it in June. Am glad to see the end in sight but frightened that it signifies the end of my active fight against cancer, since my tumor was hormone receptor negative and I don't get other adjunct therapy such as tamoxifen.
You are certainly correct, Frank, when you say that whoever said winning isn't everything never had to fight cancer.
Hope everyone has a lovely Spring day! Hugs all around. Bon0 -
Hello all
Bon there is a DVD/Video etc. rental compant here called Xtravision. I phoned one of their outlets and the guy who answered said it wasn't even registered on their computer which meant that either they were not going to get it or it wasn't in a format for general hire. However it is on Amazon.co.uk but it is an import. To play dvds or videos produced for the north american market a dvd/video player in the UK has to be "chipped" for multi regions. So I will have to check mine.
Marjie it's a small world - I have a sister living in London Ontario. I visited her a number of years ago. My cancer must be costing her a fortune in phone calls as she phones regularly to find out how her "wee brother" is doing. lol
Ado good to hear from you. Don't know about your Onc but mine complained bitterly about the treatment on the NHS being based on a post code lottery system. You may have read that we had to fight for me to get herceptin.Some of the nurses told me that he was like a dog with a bone, when he wanted something - like herceptin for me - he just wouldn't let go. lucky me ! ! He said that there were areas in Brittain where I would have had no problem being given it.
I'm in the office finishing off me lunch so in the words of that famous Rod Stewart song - " My coffee's cold and am gettin told, time to get on back to work !"
Take care all.
Frankh
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Frank...just a thought but have you ever used Skype? If you and your sister have computers with microphones (most laptops are now equiped that way) you can talk, actually talk, over the Internet for free. That way your dear sister won't go broke checking on your well being! And if your computers are equiped with cameras you can do video chats and see each other while you talk. I use Skype to keep in touch with friends and clients in other parts of the world. And with the video calls they can keep track of my progress, particularly my hair regrowth.
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Frank I had no trouble at all getting Herceptin. My diagnosis was early BC 4mm invasive and one lymph node. The Onc said I could just have Tamoxifen after the mastectomy but when she explained HER2 I decided to go for the lot. I am just hoping and praying that it has been enough. Cancer is so unpredictable as we all know. It is really odd how the different health authorities work isn't it for example I don't get any scans at all I just have to report symptoms ! So far every headache and aches and pains elsewhere and coughs and nose bleeds have thankfully been nothing. I am sure we are all the same and associate every symptom with cancer. I still feel though that it has been a great wake up call. I just value every day now and take time to be thankful for what I have. I just opened a bottle of Prosseco and sat in the evening sun to enjoy it. So what if it is only Tuesday !
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Frank - yes, definitely a small world! You are heading in for #7 this Wednesday...nxt Wednesday is #7 for me. Are you on the 21 day cycle?
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Frank I'm reading that book now. I did purchase it used from Amazon. The politics of this it really pisses me off although very typical of corporate America. Reminds me a little of the book I read years ago:
And the Band Played On: Politics, People, and the AIDS EpidemicBTW Skype is awesome. I was talking to my sister last spring in China for free. I talk to my dad who wears 2 hearing aids through skype. It's so much easier because on the phone he has to take his hearing aids out and still doesn't hear all that well on the phone. Also at times we use video so seeing my lips move makes it easier for him too.
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Hello all. Sitting here in the chemo cocktail lounge getting my 15 or 16 dose of Herceptin. Talked to med Onc today about aches and pains and general malaise. He attributes it to a long year of surgery, chemo, radiation and emotion. He says it isn't the Herceptin. Period. End of sentence. I guess that the docs just don't want to believe the miracle drug has any dark side. So be it. Whatever the cause of my discomfort I am hoping it eventually subsides. Trying to pedal my butt off on the old bike and just get on with it.
And another plug for SKYPE...I use it in my business, too, and am being interviewed soon for an upcoming article on it's uses and impact. I even downloaded it to my cell phone and can use it to 'call' my out of country clients without going broke. I had to negotiate a contract recently with a client in Poland and it was a blessing.
Yes, Lago, the politics of bringing Herceptin to fruition are just maddening. If it hadn't been for Dr. Slamon's persistance and Lily Tartakoff's money, we may never have been able to reap the benefits of the discovery. (I read 'And the Band Played on' back in the '90s when we were involved in some of the eventual drug testing on AIDS patients. That book infuriated me and brought me to
tears many times, as did our patients). Medical research is a slow and fitful process. We'll never
know how many truly lifesaving or important discoveries never got out of the lab. I once worked directly with a hematologist/oncologist who found something quite by accident that helped to prevent hair loss as a result of chemo.he was thrilled because he said that over the years of his practice the possibility of going bald was the #1 reason women dx with bc would decline chemo. Can't remember what it was, but it was something pretty simple and unexpected. But he couldn't get research on it funded because the grant organizations and drug companies didn't see it as an important issue. It didn't cure cancer so they didn't want to invest funds. Of course none of them had probably undergone chemo and hair loss.0 -
Hello all
Well went for dose #7 today. appointment was for 9 00am and was taken about 9 10am for bloods and obs and weight. Then very shortly afterwards was called to see Consultant Onc. he asked the usual questions but this time he got me to get up on couch and prodded and poked all around my tummy. said that he couldn't find anything there to worry about. Nurse who was in room then asked if I was interested in Home Treatment Care and asked Onc if he agreed. Onc said Ok but next treatment had to be in the clinic as he would have the results of the next CT Scan. He said that he expected it to show that cancer had stabilised.
Nurse then said you are due for IV dose at 2 00pm so if you want you can go on home and if anything wrong with bloods we will phone you. I live not too far away from the hospital. Went home went out for walk had lunch and returned at 1 45pm. When I reported to reception they said they have been looking for you just go on round to treatment - they wanted to get started early. Nurse put canula in without any bother flushed it and gave the dose of saline but she was then not hapy with canula so removed it and put in another in a different place, she was wary that in the middle of the herceptin it might give probs. However it was all quite ok and painless. So was back out at 4 00.
Something was in my head told that Onc was wrong with dates and when I got home in the afternoon and checked dates he was wrong. Scan is day after next treatment so I emailed him to tell him right dates. Asked in the email if he could see about bringing CT forward as I really do feel we will get a positive result - well as positive as you can given the circumstances.
Home care means that in 2 out of 3 cycles/treatments you are assessed over the phone and if everything Ok you are you are told a day and time and nurse calls to the house to adminster the herceptin. she also carries a kit in case you take a reaction. So I'm going to go for that option. Afterall the Onc can poke and prod but it's really the CT scans that tells all. Apparently there are a number of people who are on home care where it's not a complicated treatment. On 3rd cycle you have to attend clinic for bloods obs and see Onc.
So generally all went well. This is turning into an epistle ! I will write more later.
Take care all.
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Getting herceptin at home would mean I would miss out on the free cookies at my cancer centre!! Just kidding - it would be nice to be in the comfort of your own home, especially since once everything is running smoothly it's a fairly quick transfusion.
Bon/Lago - all the politics and red tape and BS surrounding R&D of new drugs is enough to make anyone crazy. You can't help but wonder what's out there ..... what we and others may be missing.
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I've had all of my Herceptins at home. It takes longer as they have to administer it more slowly, about 2 hours by the time all set up etc. It certainly beats going to the hospital and I can sit and chat to the nurse who has 100% attention on me. They apparently also do some chemos.
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Hi All
don't know what time zone this notice board is on but there is no way I was eating my lunch at 9 15 am ! (a previous post)
Bon I also chatted with my Onc yesterday about my nose being a bit runny and he thought that it was both a hangover from the chemo and inherent in me. I have to admit I used to be nasally and would have suffered from hay fever. I know that they are 2 entirely different medical problems but since I started getting the flu jab some years ago the situation has improved tremendously. My nose wasn't helped by the fact that I got it broken at school. I have put on 2 and a half pounds since last visit to clinic but that doesn't bother me as I never got back to the same weight I was before the tummy op. I'm 150lbs of speed and muscle lol.
I was going to get Skype but I don't know if I should get a new laptop first. My PC needs either replaced or else the electronic equivalent of a good dose of colonic irrigation. It's like its owner - old and decrepid.
Lago did you read "It's not about the bike" by Lance Armstrong? It's about his battle with cancer and is very good. He has written other books but they tend to be very much about cycling.
There is also another great book which I read recently called "Talk to the headscarf" by Emma Hannigan. I have a suspition that it might not be on sale on your side of the pond i.e. North America. Emma is about 40ish and lives in Bray which is about 10 or so miles south of Dublin. She discovered that the gene BRCA1 ran in the female side of her family, got tested and was found to have it. it meant that she had a 85% chance of breast cancer and a 50% chance of ovarian cancer. At this stage she was married with 2 children so she got both breasts removed then her ovaries and fallopian tubes. Guess what - she got cancer. She got cancer no less than 6 times. That was not a typo yes 6 times and beat it each time. She is a novelist. Her cancer book is fairly thick but is an easy read. I read it in 3 sessions. it is a bit of a "girlie" book but there were things that she said and things that happened to her with which I totally empathised or that they had even happened to me. When you read that the score in her favour is 6 nil it gives great hope to people who have cancer. Well I got comfort from it.
Marjie yes I'm on a 21 day cycle of H. My chemo was also a 21 day cycle. What hospital do you attend? My sis is a nurse in a hospital in London On, supposed to be retired but still working. As I told you I visited her a number of years ago - during the SARS outbreak actually.
Do any of you know of the NY Metropolitan Opera House? Well during the season they broadcast, live, some of the operas, 11 this season, to cinemas through out the world. It's the Saturday matinee - 1 00pm NY - so 6 00pm here. Although you are in a cinema you are seeing the opera live. Tomorrow night unfortunately is the last one to be broadcast this season and will be attending. There is a small group of us who meet up at each showing. You obviously get a great view because of the positioning of the cameras. Costs £20/seat in the cinema. Dearest seat in the MET is upwards of $400. Then on Sunday meeting up with 2 friends I haven't seen in an age and we are going out for lunch. Talking of which I'm at my desk having lunch and the words of Rod Stewart's song beckons again lol.
Enjoy your weekend all and take it real slow and real easy.
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Frank - I also enjoyed Lance's book.0
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I having swelling all the time since I started Herceptin in ankles, legs and feet. Mainly on my left side. I also get cramps at night frequently in my feet. The only thing that helps is to walk it off.
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Wow, Herceptin at home, never heard of anyone doing that! At this point, I don't mind going every 3 weeks, makes me feel like I'm still fighting it and "weans" me off seeing all the onc. nurses slowly!
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Hi all
What a bummer, spent yesterday under the sad illusion that yesterday was Friday !
Omaz/lago in continental Europe the top cyclists are considered as megastars. After Lance Armstrong got over his cancer he won the Tour de France several times. You will recall in his book about his cancer how severe the reactions to his chemo were. Well in one of his books - I think it was in the following book - he talks about a few of the European newspapers claiming that he didn't have cancer at all. They claimed that he only said that so that he could have chemo and used the chemo as a "wall" behind which he could hide performance enhancing drugs ! ! ! They used to search through his waste bin looking for discarded drug packaging etc.
Only someone who has never had cancer, has never had chemo, has an IQ equal to their shoe size and is an absolute idiot would come out with a statement like that. Either that or a combination of all the aforesaid plus a generous helping of "sour grapes."
Ado when I go to the clinic for the Herceptin infusion it takes about 2 and half hours. Herceptin takes 30 mins but there is the set up time, flushing, saline drip and then I am monitored for 90 minutes afterwards to ensure that I don't have a bad reaction. Have to say I can't see where the economies in Home Treatment are but then sorting out the finances of the NHS is not my problem.
This time it is the start of the weekend - few pints of the black stuff tonight and watch semi final of Magniers league (rugby football), opera tomorrow night and out for lunch on Sunday - just to let the cancer know "you haven't beaten me yet and you ain't going to ! ! !"
Marjie if you do the lottery this weekend may I suggest 3 of the numbers - 4 (Wednesday 4th day of week,) 7 (dose #) and 21(length of the cycle) lol.
take care all and take it easy.
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Debi I too had cramps in my feet and legs while on Herceptin--the swelling was not too bad. Herceptin does cause peripheral neuropathy (it nibbles at the end of nerves)--this is well known by oncs. It caused me to lose a lot of strength in my lower legs and feet. I have been told my onc that this kind of nerve damage would take a long time to regenerate and not to expect any recovery quickly if ever.You should mention it to your onc. mine was well aware of this kind of damage. While what happened to me may not be happening to you I just wanted to share my experience with you.
Frank, just curious. Do you ever feel tired--wiped out the way some of the women on this forum while on Herceptin treatments? Or do you think men may be more resilient?
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I have cramps in my legs from the herceptin and the major joint pain. It also makes me tired, but I have my last one on May 26! Whoo Hoo!! I do know a lady that has her2 and her cancer came back after 7 months off the herceptin. She is now having chemo again along with the herceptin and will have to stay on the herceptin.
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Grace: May I ask - this lady you know - did she have a lumpectomy or a mastectomy? I was under the impression that if you've had a mastectomy, the cancer can't come back after you've had the Herceptin treatments.
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GraceOkinawa - omg. I couldn't imagine having to do chemo all over again. I'm counting down to Herceptin being over with so I can stop being tired and achey. I think I'd shoot myself if I finally got to feeling good and they told me it was back. Any idea what Stage she was?
I have cramps, I'm achey, my nose and eyes run, plus I'm exhausted all the time. It amazes me that doctors think it's not from Herceptin. A woman I work with was not her2 +, but did chemo around the same time as me. She's 4 months out of chemo and coming out of the aches and tiredness. She felt like I did during chemo, but does not feel like I do now. I think it's the Herceptin docs!
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She had a mastectomy. I should have said it metastisized. Cancer doesn't have rules. She was stage 2.
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Apparently it is very economical for the NHS to give H at home and other chemos and it seen as the way forward. I asked the nurses about it as it does not seem economical but they say it is even though sometimes one nurse has to travel miles and deals with only 2 or 3 in a day. I do like it as it keeps me away from the overcrowded waiting rooms at the hospital and the waiting around when they get behind in their schedule.
Frank I am surprised they keep you for 90 minutes after each one. My first had to be done in hospital and I had to stay for 6 hours to be monitored but after that it was all at home. They do the usual obs and chat a lot which can be tiring but over all I think it is a good service.
On another note we had our 12 year old dog put down yesterday. I lost his brother 6 months ago. They really helped me through the last 18 months and it is as if they have done their bit and have freed me up to get on with life. We've had dogs for 20 years and very happy years they were with brilliant memories but of course it has been a tie as we never put them in kennels and didn't travel much. We are having our first break in 18 months when we go to Italy next week. I got fantastic insurance covering me completely even though still on Herceptin. If anyone wants the details let me know.
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isis - My onc assured me several times that herceptin DOES NOT cause neuropathy or damage the nerves in any way. The taxanes like taxol and taxotere which are often given as chemotherapy with the herceptin do cause nerve damage. I would like to know what your onc knows about the relation of herceptin and neuropathy. When I have herceptin infusions if they run it too fast it aggravates my post-chemo neuropathy. I told my onc about this and he just didn't believe me I think.0
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Omaz--I'll ask him when I see him which will not be until the middle of June. I do have the literature they gave me from the hospital when I began Herceptin which mentions that nerve damage can occur and recovery from it is very slow. My experience with the oncology people is that they have only one goal which is most important--and that is to kill the cancer. There is little empathy for your side-effects. The idea is be glad you're alive and don't complain about side-effects when the alternative is death.
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