Had appointment with oncologist (although not my regular guy, who is at a conference in America) today, with the results of last week’s MUGA heart scan. Not good.
February’s result was 59%, and this time it was 44% - and therefore they have suspended my Herceptin treatment for the moment. She said that I would be referred on to a cardiologist just to be on the safe side, as my blood pressure is also higher than usual. Last week it was 133/56, and today it was 135/90. I am normally consistent at 120/70 or thereabouts.
I will probably be recalled for a further heart scan in 2-3 months time and they’ll then see whether I can be put back onto the Herceptin.
I have to admit, I fell slightly to pieces at this news. Possibly the thought that I was having every treatment possible is one of the things that has been keeping me going. That one of my ‘just in case’ treatments will be withdrawn/curtailed, I feel like an insurance policy has been invalidated.
Mine was a grade 3, 3-4cm tumour, ER+ PR+ HER2+ with 20/23 nodes affected. I want everything they have got to be thrown at it.
I have been reassured that the Tamoxifen will do its job and that Herceptin is just an ‘extra’ and not entirely proven, but if that were the case, why would they even bother with it?
I know this is quite common, but I just feel so disappointed.
I am hoping that me having started running again (very slowly!) won’t have contributed - surely me getting fitter should help my heart, not push it too far?
Flora xxx
Hi Flora29, Gutted for you, l have watched your progress all through, and you have been so positive and strong, l hope this is a little blip, although at the moment it obviously feels like a very big one!
Fingers crossed everything settles down again very soon.
My oncologist is also in America, hope they come back with some good news!
Hugs for better news and more Herceptin
Sandra xxx
I can understand how gutted you must feel at having to stop herceptin. Sometimes I think when herceptin follows close on some of the stronger chemos - like taxotere it does put quite a strain on the heart and most people with a short break find their LVEF improves quite a bit after a rest. Sometimes the cardiologist will recommend something like an ACE inhibitor pill to help the heart. As I have been on herceptin a few years now I also take this. My LVEF does go up and down quite a bit, but fortunately with no other symptoms my onc lets me stay on it. There have been some trial with a much shorter period on herceptin than the usual year for primary bc so I think the few doses you have had will have worked well for you already. It sounds like your onc is playing it very safe and doing the best for you. Hope your next MUGA shows things have gone back to normal.
Just wanted to say my thoughts are with you. I too feel your Oncologist is probably playing it safe - the Cardiologist will give you the real low down on your MUGA scan result and it could simply be that after all the drugs you have had over the past few months it is sometimes easy to forget how much of an impact our hearts have to put up with. Stopping the Herceptin (hopefully temporarily) maybe just be what it needs for a rest for a short while and before you know it the Herceptin will be back on again. Try not too let it get to you too much - you have always been so positive and I have found many of your postings quite inspirational. Stay strong friend - sending loads of positive vibes to you in Wales
sorry you have been hit by another whammy, it never ends does it? I was speaking to my oncologist friend today about the 6 month herceptin trial, and she said she was pretty much convinced they are giving people more than they need with the 12 months dose for primary bc, and thinks this trial will show that up, but it is hard to get people to take up the 6 months rather than the standard 12 which is why this trial is taking its time. So perhaps physically it has done its job, just then need to deal psychologically i suppose, as usual.
Thank you all so much for your support. I know this is only a minor blip in the grand scheme of things, and I am taking heart (no pun intended!) in the hope that the 6 month herceptin trial will show good results. I have had a third of the year, so thats not tooooo far from half…!
My parents are now making me feel paranoid and guilty. I’m doing the Bristol SunWalk in 4 weeks time (13 miles) and they don’t want me to in case it puts a strain on my heart. I had just started learning to run again, and don’t want to stop that either. Dad (who has his own problems with alcohol) told me I shouldn’t drink as that won’t help… (I don’t think I drink that much - more than some, less than many). I know they mean well and are scared for me too, but it just makes me all so angry. Not at them, not really, just at the whole situation.
Those who like my usual cheery self, do not fear, I am having a down day which I have from time to time, but I’ll get it all in perspective soon…
So glad you are all here and understand it like no-one else can!
Flora xxxx
Hi Flora,
You have every right to have down days. We cannot be strong every day. So sorry about your blips.
You do your Sun walk, at your own pace and you will be fine. Parents will always worry what ever age we are. Mine are in their eighties, and still want to tell me what to do, what time I should go to bed, and worry if I am coping OK. I’m a bit the same with my older son, and he reminds me, in good humour, that he will do what he wants, and I explain that although I know this, I stilll have to do it. It’s like saying “take care, drive safely” It makes me feel better, but I know it won’t make any difference…
You take care
Hugs Maria
Hi Flora,
I am sure you know your capabilities, but perhaps a chat to your GP to ask their opinion about your run.
I know with my son who does marathons and did the London to Brighton (56 miles) run when he was having problems with dizzy spells and pains in the chest, but he carried on, even though l wanted him to stop, but that is what parents do! Worry, worry, worry, it is because we love you so much.
Frustration, anger, it comes out in the best of us. So pleased it has come out in you, because l was beginning to think you were superwoman!
You have done so well and been so positive, but don’t push yourself too much, nice and easy. well at least until you have the all clear again
Good Luck and fingers and everything firmly crossed for the return of a healthy heart
Hugs
Sandra xxx
Hi Flora - sorry to hear about your problems. Just want to add my support and say that your posts have always been so positive and I have admired the way you have continued working throughout your treatment. You have always given good advice to others. Have a down day, we are entitled to them. have a glass of wine, a good sleep and perhaps tomorrow will be better. Thinking positive thoughts for you. Marli.x
Hello Flora
like so many of us, I have always relied on your posts for wit and wisdom and for your ability to say it how it is with no hint of self pity - thats a rare thing.
I am very sorry to hear that things are difficult for you right now. All I would say is - don’t lose faith in your instincts - they will steer you right. You are a bright and pretty remarkable woman.
I know things aren’t great right now and I hope they will soon look better. In the meantime I will be thinking of you and zooming positive thoughts your way, even when I’m not posting much.
Take care of yourself
much love
monica xx
Aww, bless you all. What a fantastic support network we are! lol
You will be pleased to hear that I am indeed back in a better mood today, despite the GP not being sure about whether I can continue with my exercise (I will be calling the hospital shortly) and failing to insert an IUD (I believe I ‘spasmed’ and she couldn’t get any further in than about 4cms! (sorry, TMI!!!)) and now going to have to refer me to the gynae clinic.
Today’s good news is that (a) I took the day off work as I had opticians and doctors appointments at awkward times and places, making going to work pointless and have enjoyed pootling about town and (b) the optician said that the minor vascularisation she identified two weeks ago has cleared up, so it clearly isn’t too serious. Phew!
Hi Flora,
Really pleased you picked yourself up again, don’t stay down for long do you?
Love the new photo you look beautiful, and really glowing,
Well done you
Lots of Hugs
Sandra xxx
Good to hear you’re improving in spirit.
I’ve read your posts since I came onto the forum and admired your attitude and inner strength. Was sad to read the beginning of this thread to know you were not doing so well.
But onwards and upwards is your motto and I commend you for that.
May I also comment on your new photo where you look so glowing with health! I really hope you feel as good as you look.
Just catching up on this thread - Flora what a shame re the Herceptin (and everything else to be frank !) I have a heart echo tomorrow after Herceptin #3 so fingers crossed everything is fine - I had an extra stolyic but cutting back on caffeine has helped that a lot so I am hopeful.
I’m not an expert but I would think that walking is fine for your cardio -I put my car off the road temporarily in Jan and walk everywhere and feel the better for it.
keep us posted on how you get on but take heart you have had loads of treatment already - it will I’m sure be fine
I was exactly in the same boat as you this time last yeat…My 13th Herceptin wasnt given to me because my heart scan had showed a LVEF drop to 42%. I was really devasted and felt at the time the same way as you do now. I was convinced as I hadnt finished the full course of Herceptin a cancer re-occurance was almost gauranteed. My cancer also included lymph node involment…I was sent to see a cardiologist and in a four week period from the last echo cadiogram the reading was up to 52% and he gave a recommendation that Herceptin should not resume. To give the oncologist his due, he believed my mental health was as important to my recovery as the treatment and he did try to convince me that in his opinion 12 infusions of Herceptin were as much benefit as the full course, he did agree to do another heart scan and if that showed a further improvement he would let me finish the Herceptin. The next scan showed a rise in the LVEF function to 59% and I resumed the Herceptin in September and had my last infusion on Xmas Eve 2009. So you hang on in there and persist if you wish to finish the treatment and good luck.
Hi Peeps
Thanks so much for your comments and support. I saw my oncologist today - appointment arrived unexpectedly on Friday - and he has now put me on an ACE inhibitor under the monitoring of my GP, and will do another heart scan at the end of July with a view to re-starting if it is all back under control again. Why they couldn’t sort that out when I saw them last week, I don’t know!! So glad the proper man is back in the country as he does deal with things and I feel he really champions my cause!
He has said I can walk (and approves of my 13 mile charity walk!) and just shouldn’t do any fast running, which is fine as I can’t run fast anyway right now! I’m allowed to swim too, so might start doing some of that.
Lyn, thanks so much for your story. It really helps to hear from others who have gone through the same thing. Apparently, 20% of us will have this happen to us.
And thank your for the compliment, Welsh Girl. I feel full of health (albeit with creaky joints if I sit or lie still for too long), which is why the dodgy heart result came as such a shock!
Hi
I only had 13 treatments of Herceptin due to a fall in my Echo. I am a regular runner and was training for a marathon at the time when they gave me the news. I had a very good cardiologist, (also a runner) and an oncologist,(a triathlete). I was advised that research suggests 6 months as effective as 12 so never went back on it, and did my marathon! (but a bit slower than normal).
Hi Lorra
Thanks for your update. Really good to know you could run even though you had a low echo reading.
I had a BP check last Friday and it was more or less back to normal. The GP hasn’t increased my perindopril yet (it is supposed to gradually increase from 2mg to 16mg, apparently) as he was worried my BP would go too low!
Will continue with my running tomorrow. Did a 7 mile walk at the weekend, and have the half marathon walk in just 2 weeks time! That’ll be followed by a few days in Mallorca, swimming and doing nothing!!!
I hope to be up to speed to run a half marathon sometime… perhaps by next Spring.
Flora xxx
It is my understanding that herceptin hangs around in your system for up to six months after finishing taking it, so there is probably no need for you to worry
