11-01-2006 11:56 PM
Maybe I didn\'t make it clear! I had the Echo test in double-quick time yesterday due to the oncology registrar playing the system, the result was good, and I\'m being squeezed in to have Herceptin again tomorrow, so I\'ve only slipped one week! (Had to be technically \"admitted\" as an in-patient though, due to the outpatient appointments diary being choc-a-bloc until March.)
Two problems remain: they can\'t keep playing the mythical in-patient card, and there is no overlap between the Echo scan and MUGA scans, so they will need to continue MUGA scans in future to get true comparative readings fom the original base measure. MUGA scans are more easily organised, but my invisible peripheral veins are a real problem for the medics (and for me!)
Joy, I think you are right that medics don\'t fully appreciate the extent of the strain the system exerts on already-suffering patients. I don\'t think they are uncaring but I do think they are technically task oriented and also very busy, so leave the social effects side of things to breast care nurses, psychs. etc. However, I have been fortunate with this registrar pulling out the stops to get things sorted this time, and I do think the team are concerned to get things resolved. So I haven\'t lost faith yet!
Thanks for the kind good wishes, which are much appreciated.
11-01-2006 09:00 PM
---jp --- I\'m so sorry that you are now having this additional worry and having to wait. Under the circumstances that you have had one bad experience after another wouldn\'t it be nice if they took that into consideration and in order to minimise stress brought the date forward for you.
I am not one to USE MY CANCER, and have never needed to do so, but - and I apologise if this offends you as I don\'t mean to - could you not go to your GP, burst into a flood of tears and tell him that you cannot cope with another delay after all you have been through. Do ANYTHING to push him into contacting the hospital to bring the date forward. You have had one thing after another go wrong, and as someone else in that boat I know how soul-destroying it can be. I have lost faith completely and dread every hospital visit, wondering \'what now?\'
I honestly don\'t think that the medical profession realise what a strain all this waiting puts on people already living in the shadow of this disease.
11-01-2006 08:36 PM
jp at least with the echo you shouldnt suffer prodding and poking, it is very easily done and you get to watch your heart on the screen, actually really interesting.
What worried me most was having mine done in a room with an open door and what seemed like a whole battalian of soldiers waiting for theirs in the waiting room just across the corridor with only a flimsy curtain between us. (Wouldnt have minded watching theirs tho!)
11-01-2006 06:38 PM
It seems I may be OK again! Update: the oncology registrar played the system, pulled out all the stops (and no doubt mixed various other metaphors) and had me admitted formally as an in-patient for one day yesterday, and prescribed an immediate Echo test! This duly took place (only took 5 minutes to my amazement, in contrast to the half-day process for a MUGA scan) and after a very anxious wait of over 24 hours I have now been told that the results showed \"excellent\" Left Ventricle function, so I shall be receiving Herceptin again ... tomorrow! (Unfortunately this efficient and helpful young woman who - almost uniquely - has also managed to access my problematic portacath without difficulty will be moving on in a couple of weeks.) It will still be necessary to undergo MUGA scans again so as to get like-or-like measurements, so consultants are going to consult other consultants about accessing the veins of this difficult patient in future ...
Meanwhile, a burden has shifted and I am frankly surprised at the extent of the enormous relief I am now feeling.
I shall continue to take the Q10 !!!
07-01-2006 06:30 PM
--- I was very sorry to hear about your problems with the heart tests. If you can afford it it might be worth having an echo test done privately which would be a lot quicker. I did find out about this when my oncology nurse originally said that I might have to wait 3-6 months for a test on the NHS and would have gone ahead with it had my appointment not been brought forward. I was quoted Ã‚Â£215 for an echo test from my nearest BUPA Hospital which I found via the BUPA website.
If not go back to your Consultant and ask if he can do anything to get you an earlier appointment, my consultant was very good and got me an appointment for next week. Your consultant might be able to go to the PCT for you and see if they will fund it privately.
Anyway, you must keep pushing for an earlier appointment and not give up.
Good luck with this,
06-01-2006 08:29 PM
Echo test booked up to end Frebruary Reference my posting above, I went in today to the Cardiology Dept. to ask how long I would have to wait to have the alternative method scan: I was told they are booking now for the end of February. I am so frustrated I might have to wait so long to be re-tested for the LVEF measurement which failed to materialise in last Wednesday\'s MUGA test. Meanwhile the Herceptin treatment is suspended.
04-01-2006 07:51 PM
If anything can go wrong for me it will Glad things are picking up for August. However, down on this particular farm ...
Today I went back for yet another MUGA scan - the third in weeks, holding my breath to see if my heart muscle function had maintained its borderline level so as to permit continuing Herceptin or taken another downturn, precluding further treatment.
It took SEVEN stabs to get the needle correctly positioned into the portacath, 5 by 2 specialists nurses and 2 by the consultant anaesthetist they summoned, who had originally installed it. (He commented that it was not an easy port to access ... well, yes!) Then over to the Nuclear Medicine Department and after an age of preliminaries and adjustments I was finally positioned under the machine. After about 10 minutes they came back in to say we have to start it over again, it\'s not correctly postioned. Finally, after another 40 minutes lying stiffly still they said it had FAILED: the readioactive stuff was apparently sticking to the inside of the port and had not circulated to enable a reading to be taken. (I can\'t help wondering whether the 7 embroidered perforations to the membrane a few hours previously had anything to do with it.)
So I cannot have the next Herceptin treatment on Friday as I need to have another test. The Nuclear Med. docs. say that, having failed once via the port, they cannot/will not attempt it again By this time it was 5 p.m. In the absence on holiday of my consultant, I saw a senior oncology registrar who said she will organise an Echo scan (no idea when that will be) so everything is on hold and here I am anxious and fretting, fretting, fretting all oover again.
04-01-2006 07:45 PM
Good news August! It feels like things are moving along a bit now.
I\'m keeping my fingers crossed for the Bristol girls unless a decision has been made and I\'ve missed it.
04-01-2006 07:29 PM
Thanks Thanks to all who replied to my question.
Good news -my consultant has brought my echo scan forward to next Tuesday, so I will not have to wait 3 months for it. I should get the results soon afterwards and hopefully will be able to start Herceptin soon.
30-12-2005 07:47 PM
Echo Echo is I understand an ultrasound scan (it is not an ECG - electrical tracing of the heart although an ECG may be carried out during an echo)
I\'ve been having Echo + dopplers to monitor my herceptin- started before the herceptin then repeated every 3 months - as previously stated - monitoring heart function with long term use of the drug is VITAL there is a known risk of cardiac failure . From what I undersatnd - the ultrasound allows measurement of the size of the walls of the different chambers of the heart - changes could indicate problems - using this along sisde the dopplers which look at blood flow look at the \"left ventricular ejection fraction\" LEVF - a measure of how well the heart is functioning.
The licence for Herceptin when used in secondaries says 3 monthly echo and/or MUGA. (I did question the Consultant that did my last scan about which was preferable. He said echo (but then that is what he has doing!)
Delays in availablity of this test is another issue the NHS has to sort out and why a single drug cost can\'t be looked at in isolation. But if the Finnish study with chemo/herceptin combined for 3 doses were adopted......
Good luck getting your scan sorted and with your herceptin when it starts.
30-12-2005 06:23 PM
Heart test essential Hello August
I drafted a full reply to your post and then the website closed down on me and I lost it, so here goes again!
It is essential to have a heart scan before starting on Herceptin and at quarterly intervals thereafter because of the risk of cardiotoxicity. (I think you have recently looked at my postings about my own problems of this sort.)
The usual test, known as a MUGA scan, is conducted in a hospital\'s Nuclear Medicine department, and involves an intravenous injection of a radioactive dye and then a scan is conducted under a special large camera which checks the Left Ventricle Ejection Fraction (LVEF) i.e. the efficiency of the heart muscle is measured to see how well it pushes out blood from the left ventricle. If the figure is 50% or less then it is unsafe to have Herceptin, due to the risk of congestive heart failure.
An \"echo\" test sounds like an echocardiogram (ECG) which is probably the one you had before chemo (it would also be administered again before starting Herceptin) which measures the heartbeat pattern This is a standard test conducted daily from portable machines in every hospital, so it simply cannot be the test to which the nurse was referring.
If there is such a long waiting list at your hospital, why not ask to be tested at another hospital which has a shorter list? (After all it is supposed to be a NATIONAL Health Service!)
Let us know how you get on. Best wishes.
30-12-2005 01:01 PM
Echo test for heart before Herceptin I have had a bit of a delay in my Herceptin treatment . My Oncology nurse phoned me this morning to say that I have to have a test on my heart called an Echo test before I can start Herceptin
She said that there is a 3 to 6 month waiting list in Eastbourne for this test but she is going back to the Primary Care Trust to see if they will fund it privatley for me. I have to start herceptin very soon as I finished Chenmotherapy on 12 September and radiotherapy three weeks ago.
Has anybody else had to have this test before starting Herceptin. I had the normal test done on my heart before starting chemotherapy and had assumed that it would be the same test again instead of this echo test.