Herceptin - Quick Side Effects Poll
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I get my first Herceptin only infusion this Friday. Onc says 90 minutes but i hope to have the others over a shorter time. I am having a BMX on monday so hoping for SE free from the H. Chemo was pretty easy for me so I am hoping for no surprises.
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Cyndia
below is guidance on the use of Herceptin taken from a paper written by the National Instute for Health and Clinical Excellence (NICE). that is the body over here which approves the use of drugs for treatments. totally diferent from the body which approves the sale of new drugs. You will see that the talk of a figure of 3. In my case I qualified for herceptin because the cancer was originally in my stomach.
I get dose #11 tomorrow at home. Yes a nurse will come to my home to administer it. I think that home treaments have started because the clinic is bursting at the seams. Will let you know how it goes.
Guidance 1.1 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.
Granuaile
when did you leave the Land of the Tribes ? It has been a couple of years since I was in Galway. Last week was of course Galway Festival Week. I tend to stay on this side - Carlingford and Malahide. Last Saturday I was in Croaker. Won 2 tickets to the Premium Level for a double header - a 4th round play off and the 1st of the 1/4 finals. I see your name is Kate and not Grace O'Malley lol. Are you sure your racing heart is a result of the Herceptin and not a romantic interlude lol
Girls could some one tell what "deport" and "deportation" means. I'm sure it has nothing to do with sending crimnals to Van Diemen's land ! ! (Kate not sure too many on the far side of the pond will understand that one.)
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lilylady...the 90 minutes goes by quickly. I learned to knit during the txs and came to enjoy the 90 minute 'down time' as a relaxing break from a heectic pace. I would knit, chat, write notes to friends, make my shopping lists, etc. 90 minutes of peace...and healing.
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Well, I finished my last Herceptin on May 26. I thought the fatigue would never go away, but after this long I am feeling soooooooooooooooooo much better! The other day I walked around Sams and then got in line to pay. As I was standing there I realized that I wasn't tired and didn't need to rest before getting in the line! I was sooooooo excited. Hope you all will experience less pain and tiredness after Herceptin is finished. The pain is better, but I think what is left is a result of the aromasin.
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Grace...Thank you for the encouragement. I finished on June 22 and still have considerable fatigue and pain. Your post lets me know that the end of all that is in reach.0
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Thanks Grace - That's good to know!!0
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And for anyone new to Herceptin...I was skeptical unitl both my breast surgeon and radiation oncologist praised it as a true miracle drug. You'd expect that from the medical oncologist who is giving it, but from the other professionals in the team of docs to describe how they have seen such fantastic results that they can only attribute to Herceptin, well, that made me a true believer.
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Have any of you seen "Living Proof"? After watching that, I decided to not question the herceptin.
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Honestly I can hardly believe that I have only 1 more and only 3 weeks to go. It just seemed insurmountable last year.
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Omaz-I am so jealous and so glad you are finishing up.. Seems like this year has been soooo long already. Onc says if everything goes well I can be done by Xmas-but he just means with all the surgeries and rads. I am so grateful we have Herceptin but am so sick of constant appts. The only apptI am looking forward to is the day I need to have my hair cut....at the rate mine is growing tht could be Xmas next year!!!
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My first herceptin was 90 minutes, next two were 60 minutes and now because I have had no problems with the tx, I am only 30 minutes with about an added 10 minutes for hookup and flush.
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I had trouble with the 30min but it seems fine for me with the longer time.
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Omaz - what trouble did you have with the shorter infusions? Was this all the way through or did it develop as you progressed through treatment?
LilyLady - I hear you! I am getting so tired of appointment after appointment! I just got a letter in the mail today with a list of ECHO's all the way into February of next year, then ofcourse I have my herceptins until January, bloodwork, onc followups, now at my one year point I have mammograms and followup with my surgeon AND just noticed I have a followup with my rads onc. People keep saying to me "doesn't it feel good to be done??"....hmmmmm.....
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marjie - For some reason with the short infusions my neuropathy was aggravated and I would feel like I had an illness for 1 or 2 days. With the longer infusions both those effects are greatly reduced.0
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Welcome Cyndia - I agree with the others, any positive score means you are positive. Everyone and every book touts Herceptin as the miracle for us Her2 postive ladies, so I'm okay with putting up with the side effects if it lowers my chance of a recurrance so much. My drippy nose seemed to go away, so maybe that was just from the chemo. I have my tx over 60 minutes, once I tried 30 minutes (not on purpose) and did not like it.
Joya - I also have achy joints, ironically more achy the more I walk, which I'm trying to do more of to get back into shape. I think its from the Herceptin and my onc agrees. I also have not had any more scans, my onc does not do them unless there are more prominant signs of pain that can outweigh the downside of more radiation from scans.
I had treatment #12 last week, so I'm on the downhill. Should be done by end of 2011.
Frank - I was confused also but I think deported means having the port (where the injections goes into so you don't use a vein) out.
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Thanks Omaz...something to think about. As I go through treatments I seem to be getting more sore and achy in the joints and I noticed that the actual infusion itself is starting to wipe me out much more. I am just focusing on the "mind over matter" approach to get through it, LOL. I am returning to work next month so hopefully it won't be too much!
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Marjie--that is a lot of appointments! My MO handles everything, so I don't need to see my RO or BS again (unless there is a problem, of course). All my infusions have been over 90 min. I keep forgetting to ask my nurses why, but since others have had problems with the shorter infusions I don't mind. The 90 min. does pass quickly, I usually use it to get through a magazine or 2 that I have piling up at home
If you go to www.herceptin.com there is a list of SEs there, and at the bottom of the main page there is a link to the full prescribing info. The oncologists all the know there are SEs, they just seem to down play them because they aren't as common as chemo SEs.
Yes, 'deporting' refers to getting our port-a-cath removed. It's by no means a medical term--just something silly we like to say.
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Thanks everyone for your kind and insightful reponses. What a great group!!
Omaz, Thank you, I will definitely ask about the slower infusion. What is FISH?
Frank, Thanks for all the info. Ireland is one of the most beautiful places on earth, in my humble opinion.
Grace: Is Living Proof a dvd/movie? I will google it. thanks for the tip.
Marjie and Lilylady, I've had it with the tests, sticks, pokes, ports, blood tests, waiting, etc. too *(not to mention feeling sick, tired, weak, and ugly) which is why I don't know if I can face a year + more of it after chemo (with radiation as well). I have to have a really good reason for it, and my oncologist doesn't tell me much. I have only seen her for about a half an hour (two 15 minute appointments) since I was diagnosed.
Anyway, whine whine whine. I try not to, but maybe here we can??? :-)
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Cyndia - Yes I agree - what a great group!
Marina - thanks for the link to the herceptin site
Grace - yes would like to know more about Living Proof
Readingmama - thanks for sharing your problem with the achy joints. Interesting that it gets worse the more you walk. I am been trying to do more swimming and that seems to help, maybe as you are not actually standing but just floating in the water. The jacuzzi after helps too!
Does anyone have firsthand experience of when the aching stops or is it just a gradual process? 6 months would seem to be about the average (if only the oncologists would agree we get this in the first place!). What do others think?
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Cyndia - you can whine here all you want. When you whine you are undoubtedly expressing what someone else has felt or is feeling. We can all relate.0
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Cyndia--yes, we can all relate! Go ahead and whine!
Sounds like you should see another oncologist! They should take their time with you, explain everything thoroughly, and be available by phone or e-mail to answer questions you think of later. You can always get a 2nd opinion too. Her2+ bc is very aggressive. Herceptin is considered a "miracle" drug, that greatly reduces our chances for a recurrance. Some of the other ladies here might have some actual statistics and numbers if you want them. For those of us that are Her2+, Herceptin really isn't an option, it's a necessity if we want to have a chance to live a long life. I really don't mind going every 3 weeks. Most people don't have many side effects from it.Having said all that--I'm hoping you aren't Her2+, and won't need the Herceptin! Make sure you find an onc. that will answer all your questions though!
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Living Proof was a made for TVmovie about the doctor who discovered the drugs (no thanks to genetitec!) Harry Connick Jr plays the doctor. There is no singing, unfortunately!!
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http://en.wikipedia.org/wiki/Living_Proof_(film)
Here is a link about it.
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OH I'LL LET EVERYONE KNOW WHEN THIS ACHING STOPS!!! LOL as a matter of fact you won't get me to shutup about it. My herceptin is done is January so I'm hoping to get deported in February followed closely by a miraculous absence of aches and pains :P
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I have been in Herceptin since july 6th 2011 so I had 2 sessions only ..many more to come .Side effects mmmm not so much just tired and headaches, so so far so good
.Im also in a researh that is controlling my heart and im taking heart pills, so i hope it works, so far evertyhing has been just perfect.I just hope stay like that until next year .0 -
paulamati--is that a clinical trial your in? If so, which one? Just curious what they are researching. What heart med do they have you taking? Glad you have minimal side effects! Mine aren't too bad either--some fatigue and headaches.
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lol Marjie--I'll have to make sure I keep checking in so I can "hear" you say you are feeling better!
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TMarina - I shouldn't complain so much!! I really feel pretty good but do get frustrated with the achiness. I am interested as well in the study you are in Paulamati - I have a cardiologist and am being monitored quite closely for the duration of my treatments.0
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okay I was reading my papers and the study name is Multidisciplinary approach to novel therapies in cardiology oncology from University of Alberta, Canada.So i have to take 1 pill once a day for one year during the course of my trastuzumab chemotherapy.The pill can be perindopril,bisoprolol or placebo pills.I also have 4 cardiac MRI , one before starting the medications,3and12 months after starting the medications and 1 year after th medications are finished.they aslo check my blood to monitore my electrolytes and kidney functiion.
i hope this help you guys, if you have more questions just ask.
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Very interesting - since I am in Canada as well, I might bring it up at my next appt and see what they know about it.
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