Well another month goes passed with nothing to report for Darren. His doing well, and the new drugs are amazing and with very few side effects.
The girls are doing ok. Tanisha has struggled to cope with the changes that come with xmas at school and we have been told Jaz has hyper mobile joints and now have to do nightly excersises to stop her leg muscles getting too tight, as she walks on tiptoes.
I think I might have to start a blog about our wonderful girls who are affected by Autisim, but not sure I have the time :)
Friday 17 December 2010
Tuesday 23 November 2010
Mutation results are in :)
Got a letter the other day but just got chance to post.
Wonderful news is Darren does not carry the mutations which would effect his treatment.
There is no reason to think the new chemo shouldnt work :)
woo hoo
Wonderful news is Darren does not carry the mutations which would effect his treatment.
There is no reason to think the new chemo shouldnt work :)
woo hoo
Monday 15 November 2010
Well what can I say..
not a lot really, things with Darren are fairly settled here. The new drugs are great and Darren is no longer tired or feeling sick! His starting working out again which is great apart from at this rate he will need new clothes again soon.
We are having a few other difficulties. Our beutiful girls, who are the light of our lifes but of course come with worries. Tanisha is doing well in her new junior school but Jaz is currently also going though the assessment for Autisim too. Its a hard time some days but when i think on what we have been though as a family in the last 20 months, I just know we will be fine :)
Hope your all well and not too cold!!
We are having a few other difficulties. Our beutiful girls, who are the light of our lifes but of course come with worries. Tanisha is doing well in her new junior school but Jaz is currently also going though the assessment for Autisim too. Its a hard time some days but when i think on what we have been though as a family in the last 20 months, I just know we will be fine :)
Hope your all well and not too cold!!
Wednesday 20 October 2010
Good news, phew I can breath again!!
We went to Hammersmith yesterday, we decided to chance driving and it wasnt too bad. Darrens new specialist is Spainish and looks like aresearcher should, big glasses, very tall and slightly on the nerdy side but his the best so who cares :)
Darrens results are nearly all back. His cancer levels in his blood have dropped quicker than we could ever have hoped for. And now is cancer cells stand at 0.664% which is great as it means its the lowest its ever been since this all started 19 months ago.
We are still waiting for mutation results (checking if Darren is still human)but they should back intime for his next appointment on the 3rd November.
Overall a great results and the new chemo is clearly doing its job.
Darrens results are nearly all back. His cancer levels in his blood have dropped quicker than we could ever have hoped for. And now is cancer cells stand at 0.664% which is great as it means its the lowest its ever been since this all started 19 months ago.
We are still waiting for mutation results (checking if Darren is still human)but they should back intime for his next appointment on the 3rd November.
Overall a great results and the new chemo is clearly doing its job.
Monday 11 October 2010
Change of plans
Darren now has to see the Big man of CML himself as he has requested to see Darren after recieving his notes. We now have to wait another week to see him but hopefully its a good news as if he now has the best man for the job :)
Sunday 10 October 2010
Thursday 7 October 2010
Wednesday 6 October 2010
Well its offical, Lister Hospital sucks!! And so does car insurance
To say the last week has been stressful is an understatement of the year. I have been battling the insurance company who are now saying as Darren was driving the car more than me I shouldnt have been given the policy!! Now saying car is written off but refusing to pay, I have wasted many hours on the phone in tears. Jasmine starts her speech and language group for the next 5 fridays in the town so need my car and also starts her special preschool too (for those that dont know they think shes Autistic too), so yes I had a few choice words for them.
Lister on the otherhand I am used to being terrible now. Darren went for another appointment and we found out that they still havent made the Hammersmith referral. His doc told me he will make it today, and he better as I will be chasing it up with calls tomorrow. Darrens scan appointment didnt arrive so we popped down there on the way out to be told tey had bounced it back as he had the same scan last year!! AND there point was?? So be warned people dont ask Lister for more than one scan a year for the same checks, it must be against the rules, weirdos.
Darren is fine physically and is feeling less tired and sick on these new drugs but I guess the worry is we just dont know if they are working. Because his now out of second stage remission, he could come out of all stages (there is 3) as there is only one he meet now. We really just want to get to the top specialist now, and hope to see them on Tuesday, if not heads will roll I promise you, Im not in the mood to be messed with anymore.
Can you tell im stressed?? Me? Never!!
A big smile sometimes hides a huge worry xx
Lister on the otherhand I am used to being terrible now. Darren went for another appointment and we found out that they still havent made the Hammersmith referral. His doc told me he will make it today, and he better as I will be chasing it up with calls tomorrow. Darrens scan appointment didnt arrive so we popped down there on the way out to be told tey had bounced it back as he had the same scan last year!! AND there point was?? So be warned people dont ask Lister for more than one scan a year for the same checks, it must be against the rules, weirdos.
Darren is fine physically and is feeling less tired and sick on these new drugs but I guess the worry is we just dont know if they are working. Because his now out of second stage remission, he could come out of all stages (there is 3) as there is only one he meet now. We really just want to get to the top specialist now, and hope to see them on Tuesday, if not heads will roll I promise you, Im not in the mood to be messed with anymore.
Can you tell im stressed?? Me? Never!!
A big smile sometimes hides a huge worry xx
Monday 4 October 2010
Right they seriously are getting it in the neck now!!!
Phone call recived this morning at 10am to tell me that after they lost results 3 weeks ago and had redone this morning that they didnt take enough, this letter has gone off, I have had enough of being nice now!!
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
Lisa
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
Lisa
Saturday 2 October 2010
Darren had another appointment. His getting bowel and side pain and white cells and neurtophils are up. Because they have yet again (5th time) lost results, they dont know if the cancer getting out of control or if its an infection. 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 Monday. 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.
Scan booked and blood being done again on Monday. 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.
Friday 10 September 2010
Can it get worse? yes it can
Darren had a car crash yesterday, this is whats left of his little car :(
Thursday 9 September 2010
Well more results are in and its not good :(
Darren has developed a resistance to the chemo, even at double dose. The bone marrow shows a rise to 25% of cells having cancer but not in the way that makes in blast crisis (very complex). The cancer is rising and he has splited out of the 2nd part of remission and it not great.
He now starts new treatment tomorrow but has had loads of bloods taken for gene testing. If he developed a resistance to this chemo he could be resistant to all of them and then its straight to Bone marrow transplant.
For anyone that isnt registered please do if you can here
http://www.anthonynolan.org/What-you-can-do/Save-a-life.aspx
and if you cant remember why its important please look here:
He now starts new treatment tomorrow but has had loads of bloods taken for gene testing. If he developed a resistance to this chemo he could be resistant to all of them and then its straight to Bone marrow transplant.
For anyone that isnt registered please do if you can here
http://www.anthonynolan.org/What-you-can-do/Save-a-life.aspx
and if you cant remember why its important please look here:
Tuesday 17 August 2010
bad news keeps coming! :(
Blast cells from bone marrow hadnt changed at all still at 4% on last tests. They have told us if it goes to5% he will be in crisis phase which is classed as AML which is scarcy as that is full blown, iv chemo and stays in hospital stuff :(
please keep us in your thoughts.
Im sure we will get though this, we always do and are just treating this as a bump in the road.
please keep us in your thoughts.
Im sure we will get though this, we always do and are just treating this as a bump in the road.
Friday 6 August 2010
Bad news at appointment :(
Darrens chemo isnt working, and the results show his cancer cell count is back to what it was Aug last year :(
He now has double chemo, a bone marrow biopsy next week and a referal for Hammersmith which has the best specialist in Europe.
Its very hard to hear that the last year has been for nothing and we are pretty much back to the begining. The chemo is making Darren feel sick and his tired :(
Will update with more news when we have some, hopefully next time with better news.
He now has double chemo, a bone marrow biopsy next week and a referal for Hammersmith which has the best specialist in Europe.
Its very hard to hear that the last year has been for nothing and we are pretty much back to the begining. The chemo is making Darren feel sick and his tired :(
Will update with more news when we have some, hopefully next time with better news.
Tuesday 20 July 2010
Bad news
Darrens results are in. The amount of cancer in the blood isnt goign down quick enough, and so now we have to go back in a few weeks and discuss other options :( to say we are scarced is an understatement.
Tuesday 8 June 2010
Still here and still waiting :(
Well Im so sorry to have neglected my blog, the one thing that has kept me sane! Darren had another Apppointment 3 weeks ago. His specialist decided to scare the hell out of us and talk to us about Bone Marrow Transplants (BMT). Darren still hasnt met remission and there is a magic time limit btween 12-18 months from dx to remission before they have to consider other treatments. So here we are 15 months in and still not there.
Scarcy thing about BMT is we have always thought we would be ok, Darren has a half brother and 2 beutiful girls if needed right?! WRONG. Unless Darren has a full sibling the match from half sibling and children is just as risky as if using a stranger donation. So after this wonderfully insightful discussion with specialist (who didnt have full test results back at time) we left with another round of chemo drugs, a 3 monthly appointment and strict instruction to return if darren went downhill.
So fast forward to Monday and Macmillian nurse Alison calls, she tells me there is a problem with darrens last blood tests and so he has to go and have more bloods on Friday :(
So now we wait again! Somedays its pretty easy to forget Darren has cancer and that we will now spend the rest of his/our life with it. I think its only hit me the last few weeks how thats going to be. we are never going to be free from, it will always be there. Even with cure with BMT, it still daily rejection drugs to take rather than Chemo, either way life isnt going the path we thought it would. But hey, we will hang on in there, theres way to much life to spend it battling the thorns in the way!
Love hugs and prayers to those that need them and prayers to my wonderful friends who have lost their battle :(
Scarcy thing about BMT is we have always thought we would be ok, Darren has a half brother and 2 beutiful girls if needed right?! WRONG. Unless Darren has a full sibling the match from half sibling and children is just as risky as if using a stranger donation. So after this wonderfully insightful discussion with specialist (who didnt have full test results back at time) we left with another round of chemo drugs, a 3 monthly appointment and strict instruction to return if darren went downhill.
So fast forward to Monday and Macmillian nurse Alison calls, she tells me there is a problem with darrens last blood tests and so he has to go and have more bloods on Friday :(
So now we wait again! Somedays its pretty easy to forget Darren has cancer and that we will now spend the rest of his/our life with it. I think its only hit me the last few weeks how thats going to be. we are never going to be free from, it will always be there. Even with cure with BMT, it still daily rejection drugs to take rather than Chemo, either way life isnt going the path we thought it would. But hey, we will hang on in there, theres way to much life to spend it battling the thorns in the way!
Love hugs and prayers to those that need them and prayers to my wonderful friends who have lost their battle :(
Friday 26 February 2010
Well if its not one fight its another!
Darren had his 3 monthly appointment and all is pretty good, he has met 2nd stage remission so only one stage left before full remission. His bloods as always were a little "off" but nothing major and just keeping an eye.
Our eldest Tanisha was given a full diagnosis of Autism this month, so alot of our engry is going into getting her the support she needs. But hey we have the fighting spirt so might as well make use of it.
Not a huge amount to write about im afraid, but it feels great :)
Hope your all well
I will be tapping your wallets for money for Race for Life soon so please give :)
Our eldest Tanisha was given a full diagnosis of Autism this month, so alot of our engry is going into getting her the support she needs. But hey we have the fighting spirt so might as well make use of it.
Not a huge amount to write about im afraid, but it feels great :)
Hope your all well
I will be tapping your wallets for money for Race for Life soon so please give :)
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