hello ladies, first postig so hi to everyone.
I was due to start combination of taxol/herceptin last week but as my echo result showed an ejection fraction rate of 50% i now have a cardiology referral! The guidelines implicate that patients should have a ‘baseline/starting rate’ of 55% - presumably to allow for potential decrease during H treatment that is still safe.There are quite a few posts here from ladies having H delayed but i have not seen any from Non starters!
At this point we do not know why my rate is low or what i should/could be doing to improve it.
My onc is really on the ball and was looking into whether i would be a candidate for Perjeta alongside herceptin. Perjeta was given the ok and within a week my onc was asking for it for me. Except at that point she did not have the echo result…
so another irritating and worrying set back at a point where i was ready to Bring On the treatment.
The taxol is going ahead and so far, after no. 1 earlier this wk all ok chemo wise.
I would love to hear from anyone who has had similiar experience
Ta x
Hi Alize and welcome to the BCC forums. Whilst you await replies please feel free to call our helpliners with your experiences, they may know of others who have had similar via our ‘One to one support services’, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000.
The following link will take you to lots more information and support services from BCC which you may find helpful:
Take care
Lucy
Hi Alize
Just to wish you well - I am sure the oncologists etc will sort something out for you from their many possible combinations of treatment. Sounds like yours are really on the ball! I am on Herceptin but have been lucky that my ejection factor has stayed steady around 62 - a little below my age! It does seem that all the tests we have seem to throw up other possible problems from time to time, or cause some - doh! Its a difficult time but this bc (I refuse to give it the status of capitals) is only part of what we are not who we are and I wish you well as you progress through your treatments.
One tip in case you don’t know - the antisickness meds they give you with chemo can give you bad constitpation so plan ahead to avoid.
All the best Orangepeko
Hi Alize. My scan was only 46 before starting on tax/herceptin. I’m due a second scan in a couple of weeks so will see if it has dropped. My ONC Consultant said the min level has recently dropped,to 40. I’m in East Yorkshire.
Hi ladies, thanks for responses. I saw the onc yesterday and after a chat with cardiology all was well for me to have herceptin. hooray! so had first herceptin with weekly taxol no.2 and other than being wide and steroid wired awake im feeling fine.
hopefully will get the necessary go ahead for perjeta also soon and then apparently switch to 3 wkly taxotere…
Night all x
Good to hear you went ahead - just to say my First echocardiogram gave me a 50 percent rate so they did a second that came out as 48 - then I had a referral for a cardiac MRI which showed my actual EF rate was 60!! So there is a major swing factor on these things;)
Glad to hear you can have the treatment Alize. All good wishes and may your side effects be little ones. X
I had my last muga scan two weeks ago, and number 9 herceptin on Monday…,my muga came back this week at 54%
which is borderline, so they may stop herceptin for a while…does anyone know if this means you have to start from scratch again?
ive also had bad side effects this week for the first time, breathless, headaches all week and tired out…
anyone hnicky ickynicky icky
I had my last muga scan two weeks ago, and number 9 herceptin on Monday…,my muga came back this week at 54%
which is borderline, so they may stop herceptin for a while…does anyone know if this means you have to start from scratch again?
ive also had bad side effects this week for the first time, breathless, headaches all week and tired out…
anyone hnicky ickynicky icky
Hi
I am having herceptin No 5 on Monday and went for results of 2nd muga today. It has gone down from 68% to 56%…Herceptin going ahead as normal mon. They are doing another Muga in May and if dropped again they said may stop it. I am only in forties with no other heart issues before. I have no symptoms eg breathlessness etc. My questions are similar to Nickyw’s. What is the lowest they will give it you on. Is there anything you can do to get it back up ? saw different registrar this morning and had another questions so forgot to ask. Any advise greatly appreciated xxx
Bump