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aggrrr

 

Darren had another appointment. His getting bowel and side pain and white cells and neurtophils are up. Becauser they have yet again (5th time) lost results, they dont know if the cancer getting out of control. They know that his levels were raising on Imatinib but now have no idea if disnapib (sp??) is working.

Scan booked  and blood being done again on weds. Still waiting for hammersmith appointment.

 

His doc was really not happy with bloods but not a lot we can do other than wait.

Last tests showed 25% in bone marrow with 4 % blasts in Feb

BCR ABL were up from 2% to 8% in feb.

I'm sorry to say this - but I think you're being too nice!

if it was me i'd turn up at Er & demand blood tests - you only get one life & I get the impression that the doctor's aren't taking things seriously!

I feel for you and Darren is so lucky to have you by his side.... it must be very worrying for you both!

I am also waiting for results (Glivec having proven not good for me - blood levels dropped dramatically) - it's hard.

I do hope you get a succesful resolve soon - maybe chase up a bit (as I have done almost every day!)

Meanwhile as Lottie (a CMLer in USA) always ends - carpe diem (seize the day!)

"What cracks the oyster, doesn't touch the pearl" -a Rumi quote that I am finding useful to hold to.

Love Beth

This is wholly unacceptable that they repeatedly loose results

When I was diagnosed in Aug 2004 I was referred to the Hammersmith by Watford General within 2 days.

Be Firm and insist. As it has been said . You only have one life.

we wont have to deal with them soon as off to Hammersmith too. Im a real pain to the team there and they are used to me phoning and kicking them up the arse.

Think we arent far from you Steven, we are at Lister.

They were meant to send Darren off to Royal free when dx 19 months ago but then decided to keep him there instead.

Its been horrible tbh, they are truely crap

FAO: The Chief Executive

 
Dear Sir
 
I am writing with a very strong complaint against your staff at Lister Hospital, focusing on the incompetence of your phlebotomist team.
 
My husband Darren has been under the care of your hospital for the last 19 months after receiving a diagnosis of cancer, Chronic Myeloid Leukaemia. As this is a blood cancer he has had to have blood tests regularly throughout his treatment as well as bone marrow biopsies.
 
In the 19 months his blood tests have been mislaid, not sent to Hammersmith hospital quick enough or they have not taken the right bloods, at least 8 times! At one point he has needed the same tests redone 5 times. These tests are very important, as they tell his treatment team if his treatment is working. Due to this delay in receiving bloods, his team did not know he was not responding for an extra 3-6 months, as he had no blood results from Feb till Sept, even though he is on 3 monthly appointment and is now having to undergo new treatments.
 
At the start of his treatment they also lost his bone marrow biopsy and therefore the team had no idea of baseline tests.
 
As you can understand this is a worrying time for us and we should not need to be chasing or having bloods done again and again. I can cannot make it clear enough how very upset we are with this and also know that as his cancer levels are raising and that this could have been picked up earlier if your staff had done their jobs.
 
I am sure you will want to look into this terrible level of service and we will await you response within the next 7 days.
 
Darren's doctor is Dr K and his Macmillan nurse is Debbie , both of which are very aware of all of this.
 
Yours Sincerley
 
Mrs L  and Mr D  
 
 
 
 

I bet you feel much better for having written that!

I hope they soon get back to you & that the results are OK,

best wishes,

Barbara

Dear Lisa

 

What a nightmare you've both been having. Totally unacceptable and amaturish. Well done on the letter. They have to deal with this now. I also find writing things down very helpful in venting some of my anger at times. As i've long since stopped worrying about making a fuss, can I suggest you ring the Outpatients department at the Hammersmith to see if the referral letter has reached them yet? Failing that ask to speak to the consultants secretary (if you know who Darren has been referred specifically to) and ask them. If something official has got there, then they should be able to offer you an appointment there and then. It will save them having to write to you and send it 2nd class, only to suggest a time you can't make. This is what I did for my son Bill. He definately didn't wait weeks to be seen. The number of outpatients is 0208-383-3297. I've only found them to be very efficient and helpful.

Best of luck

 

Sarah

Great letter,(as a point of interest did you know that when a local hospital refers people to a specialist hospital it efects their funding)

Michael

no I didnt know that! no wonder they held off referring him at the start of all this, shocking

Hi you 2 Yes I think we are just up the road from you. Please email us and perhaps we can get together or call each other. Hopefuly give some help to you. You can contact at steven.carol@ntlworld.com.love to hear from you or anyone else. Steven and Carol

I absolutely agree with Barbara when she says you should just turn up at Hammersmith A&E. Your husbands present consultant should have referred you immediately he saw the results you last Feb which showed that Darren was certainly in accelerated phase at that point-  Hammersmith would do their own tests anyway. Given what you are now saying about the current symptoms of pain in his side etc I think you need to stop waiting for your consultant and act.

Sarah has given you the tel number of HH- please follow her advice and call them. You can ask to speak to an available consultant and then tell her/him that you are really concerned about his current symptoms. 

Sandy

Thanks everyone, Darren seen his own specialist today who is sending off emergency referal this afternoon (should have done it last week!)

What makes you say accelerated phase?? I thought that was to do with the number of blasts in BMB? I thought for certain he was in accerlated when dx because of the large spleen, night sweats, weight loss, enlarged liver and bruising, but they assured us he wasnt.

I will be chasing it up tomorrow to make sure referal was recived and have spoken to Hammersmith yesterday who said they will call with appointment for Tues PM as soon as they recive the referal.

Still no BCR ABLs so no idea of drugs are owrking but they said they will call them though as soon as they recieve them.

Chronic phase  - raised white cell counts without evidence (or less than 5%) of blast cells in bone marrow aspirate/biopsy- 

Accelerated phase - high white cell and platelet counts with low haemaglobin levels- evidence of blasts in marrow and peripheral blood - i.e above 5% and up to 30% blasts

Blast phase- increased symptoms with more than 30% blast cells in blood and marrow.

please take a look at the FAQ page on the main menu

Sandy

See thats where Darren is confusing, he had very high WBC count at dx of 414, but he has always had 4 % blast cells, never changed at all.

To say Im angry with his current treatment is an understatement. I have been quite forceful in the past and they have always told me all is well and stop worrying. I had to ask 3 times for last bmb results, they just kept telling me they were fine but only when he printed it out to show me did he notice blasts at 4% in Feb, same as they were at dx.

Whats the chances he is in blast crisis?

Hammersmith recieved an urgent referal for Darren today, they called to say they are to discuss it and get back to us with appointment next week!