Almost the end of July. This week found me back in CLL Clinic where my blood tests showed no response to the 2nd round of Chlorambucil. WBC up a little and HGB down a little on last month. My consultant decided to lengthen the next course of Chlorambucil to 14 days and so, here I am, on day 3 with 11 more to go. Coughing quite a bit in the evening and getting a bit breathless.
Not all bad though. We managed to get to see our daughter and granddaughters for a couple of days inbetween chemo rounds and spent a week with my sister in Wales. Lots of pub meals so no one had to cook!
Thursday, 28 July 2011
CLL - CONTINUING THE ROLLERCOASTER RIDE (2)
By the end of May I was hospitalised with cardiac problems. My heart was booming and seemed to me to be so slow. Everything was an effort. I was admitted to AAU. My stay there was not good. The SHO kept telling me there was nothing wrong. Note to all patients here...be sure to fight your corner. I fought mine and refused to go home. A senior doctor appeared and I was put on a heart monitor. He diagnosed Fast Atrial Fibrulation (going at the rate of a marathon) and Flutter and prescribed betablockers. The following day 2 more junior doctors appeared and suggested that blood was pooling in my heart chamber, it wasn't emptying properly. I was more at risk of stroke and Warfarin was recommended. Given my CLL prognosis and risk of hemorrhage I took the decision to refuse Warfarin but said I would start on Asprin instead. There was no followup in outpatients by the cardiac department. I believe that as I am reaching the end of my CLL journey, it was felt I wasn't worth following up. It was a very low point for me. However, the betablocker had stopped the booming in my chest.
There was a little response to the Chlorambucil and so a second round was started in June. My doc suggested I didn't expect anything from the treatment, then I wouldn't be disappointed. I was to slow right down.
July found me having a lot of angina attacks at rest. This is angina while trying to make a cup of tea or cleaning my teeth and even waking me up a night. My GP sent me to the rapid access chest pain clinic at my local hospital and I was admitted to the Cardiac Ward. Diagnosis? Left Ventricular Hypertrophy and Atrial Fibrillation, happily with no sign of heart failure. After another overnight stay I left with more heart pills and an appointment for a stress echocardiogram in August. The pills are working well and no more angina at the moment. However, I have to stop these pills 3 days before the echo and I admit that this frightens me.
There was a little response to the Chlorambucil and so a second round was started in June. My doc suggested I didn't expect anything from the treatment, then I wouldn't be disappointed. I was to slow right down.
July found me having a lot of angina attacks at rest. This is angina while trying to make a cup of tea or cleaning my teeth and even waking me up a night. My GP sent me to the rapid access chest pain clinic at my local hospital and I was admitted to the Cardiac Ward. Diagnosis? Left Ventricular Hypertrophy and Atrial Fibrillation, happily with no sign of heart failure. After another overnight stay I left with more heart pills and an appointment for a stress echocardiogram in August. The pills are working well and no more angina at the moment. However, I have to stop these pills 3 days before the echo and I admit that this frightens me.
CLL - CONTINUING THE ROLLER COASTER RIDE
At the beginning of March it seemed like I was heading for a remission. My counts were looking reasonable and my doctor suggested that 2011 might be a good year (the last 2 years being so hard). But by the middle of April the white cell count was well on the way up again (40,800). By May it had risen to 71,000 and I was starting to hemolyse again. I was told I am refractory to previous treatments and it was time to think about my future. We discussed hospice and end of life issues. I asked for and received a DNAR form (Do Not Attempt Rescusitation). It was decided that I would start a course of Chlorambucil + Prednisolone as a palliative measure. My doc suggested it was time to speak to my family about my poor prognosis. If there was no response to Chlorambucil then we would discontinue treatment.
Thursday, 5 May 2011
CLIVE JAMES AND CLL
Clive James, the Australian personality has CLL.
His wife is quoted in the Daily Mail, 'He is suffering from CLL - Chronic Lymphocytic Leukaemia - which if you must have, the condition is the kind you want because they can monitor it.’
Clive himself is quoted as saying, 'I got hauled in for kidney failure.
I was immediately diagnosed for everything else as well, including several lung diseases and a version of leukaemia that is supposed to develop slowly but in my case couldn’t wait to get started, mainly in my lungs'.
What a contradiction, 'the kind you want?' No cancer is 'the kind you want' and everytime a celebrity or doctor is quoted using words such as these about Chronic Lymphocytic Leukaemia or any other cancer, it gives a false, benign impression of the disease. Of course it is doctors who tell the patients this when they are diagnosed. Then, as in Clive's case (and mine), when all hell breaks loose we remember what the doctor told us and wonder why we weren't told the truth in the beginning.....many cases of CLL can be, and are, much more agressive and many will fall between.
There is much on-line information about CLL and later I will post web addresses of such sites that are so helpful.
To Clive I say 'may you be well'.
His wife is quoted in the Daily Mail, 'He is suffering from CLL - Chronic Lymphocytic Leukaemia - which if you must have, the condition is the kind you want because they can monitor it.’
Clive himself is quoted as saying, 'I got hauled in for kidney failure.
I was immediately diagnosed for everything else as well, including several lung diseases and a version of leukaemia that is supposed to develop slowly but in my case couldn’t wait to get started, mainly in my lungs'.
What a contradiction, 'the kind you want?' No cancer is 'the kind you want' and everytime a celebrity or doctor is quoted using words such as these about Chronic Lymphocytic Leukaemia or any other cancer, it gives a false, benign impression of the disease. Of course it is doctors who tell the patients this when they are diagnosed. Then, as in Clive's case (and mine), when all hell breaks loose we remember what the doctor told us and wonder why we weren't told the truth in the beginning.....many cases of CLL can be, and are, much more agressive and many will fall between.
There is much on-line information about CLL and later I will post web addresses of such sites that are so helpful.
To Clive I say 'may you be well'.
Monday, 14 March 2011
Japan
From the stats I know that someone in Japan reads my blog. I hope that you are not in the tsumami/earthquake zone and that you know that the world is thinking of you all. Please post a comment so I know you are well.
Soapy.
5 June 2011
Although we don't seem to get any updates in the UK about what is happening in Japan and how you are all doing in the wake of what happened, I do not forget you and think of you all often.
Soapy.
5 June 2011
Although we don't seem to get any updates in the UK about what is happening in Japan and how you are all doing in the wake of what happened, I do not forget you and think of you all often.
Sunday, 13 February 2011
PREDNISOLONE WITHDRAWAL
I have been on Prednisolone for over 2 years now for AIHA. Starting at doses upto 60mg a day and decreasing, each time I get to about 10 mg a day I suffer terrible heartburn with pain radiating into jaw/teeth. When I get the dose to 10mg or lower the AIHA has returned. I am now on my 5th withdrawal and again at 10/5 mg on alternating days my heartburn is scaring me. In 2009 it was so painful I ended up overnight in hospital as a suspected heart attack (I have a history of angioplasty for angina).
I currently am also taking Azathioprine (immune suppressant), Penicillin V and Septrim (both antibiotics), Aciclovir (anti viral), Omeprazole (for tummy), folic acid.
I had a splenectomy last July for the AIHA and whilst in hospital again in October with a chest infection and breathing problems it was discovered that I was hemolysing again. Prednisolone was restarted at 60 mg a day together with Azathioprine which is hoped to take over from the Prednisolone. As well as the heartburn I have the shakes, general weakness and palpitations (which is to be expected after so long on this drug). I am a complete addict where this drug is concerned and life seems permanently one round of withdrawal symptoms. I am also recently diagnosed with a 'bit' of emphysema in the top of both lungs and damage to both lower lungs from past pneumonias/chest infections and 'some degree of pulmonary collapse' from the splenectomy.
Each withdrawal takes longer and this time it has been extremely slow and difficult. As an 11+ year cller I appreciate that I am an 'old hand' at cll and its various twists and turns, however, any advice would be appreciated.
I currently am also taking Azathioprine (immune suppressant), Penicillin V and Septrim (both antibiotics), Aciclovir (anti viral), Omeprazole (for tummy), folic acid.
I had a splenectomy last July for the AIHA and whilst in hospital again in October with a chest infection and breathing problems it was discovered that I was hemolysing again. Prednisolone was restarted at 60 mg a day together with Azathioprine which is hoped to take over from the Prednisolone. As well as the heartburn I have the shakes, general weakness and palpitations (which is to be expected after so long on this drug). I am a complete addict where this drug is concerned and life seems permanently one round of withdrawal symptoms. I am also recently diagnosed with a 'bit' of emphysema in the top of both lungs and damage to both lower lungs from past pneumonias/chest infections and 'some degree of pulmonary collapse' from the splenectomy.
Each withdrawal takes longer and this time it has been extremely slow and difficult. As an 11+ year cller I appreciate that I am an 'old hand' at cll and its various twists and turns, however, any advice would be appreciated.
Thursday, 27 January 2011
ANOTHER DIAGNOSIS
After my last stay in hospital and visit to Wales, I still had a lot of trouble with my breathing. Lung function tests were done and happily my breathing is now better. However, yesterday I saw a lung specialist and his findings (taking into account CT scan of lungs and some more lung function tests) are
1) a bit of Emphysema in the top of both lungs causing loss of lung tissue 2) the bottom of both lungs have scarring from previous infections and possibly the splenectomy.
3) This has reduced my lung capacity by 25% over all.
4) No significant narrowing of airways and not Bronciectasis
Now this seems a big deal to me. Emphysema is a very scary word and under the heading of COPD. His advice was try not to get any more chest infections (3 pneumonias so far with my CLL + the chest infection last October)- all very serious and requiring hospital in-patient treatment.
Meanwhile I am still strugging with Prednisolone withdrawal. I could do with some really good news.
1) a bit of Emphysema in the top of both lungs causing loss of lung tissue 2) the bottom of both lungs have scarring from previous infections and possibly the splenectomy.
3) This has reduced my lung capacity by 25% over all.
4) No significant narrowing of airways and not Bronciectasis
Now this seems a big deal to me. Emphysema is a very scary word and under the heading of COPD. His advice was try not to get any more chest infections (3 pneumonias so far with my CLL + the chest infection last October)- all very serious and requiring hospital in-patient treatment.
Meanwhile I am still strugging with Prednisolone withdrawal. I could do with some really good news.
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