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.

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.

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.

NHS GP SURGERY PRACTICE NURSES

Just here to blow off steam..... For the last few days....maybe even since the splenectomy 2 weeks ago, I feel like I've been kicked in the left kidney area. Yesterday after an hour journey in the car, with the kidney area supported on a folded blanket, it was somewhat uncomfortable by the time I got home. I have been eating paracetamol on a regular basis for 2 weeks. It helps a bit but not much. Today I decided to test my waterworks. It showed BLD-SNG ERY_HB 25+ hemolysed. Now I'm no nurse or doctor and maybe my kit has not been stored correctly and I don't know what +25 means but I know its a couple of stops up the scale from what it should be if the dipstick is correct. I phoned the hospital who 'advised me to go to the surgery, see a doctor or nurse pronto to get it checked professionally and maybe I would need some antibiotics for an infection. Get back to the hospital if necessary'. Brilliant, quick advice from a specialised cancer nurse who knows I wouldn't phone for advice without good reason. So I phoned my surgery....
No appointments today....that's good then....so I quietly stood my ground and got an appointment with the practice nurse who is allowed to issue prescriptions. She found no trace of anything and I explained about the pain. What I got was 'there's nothing in the sample'.....(so go home little lady and stop wasting my time, and what are you doing with your own test kit!!!) - nb. the hospital gave me a test kit during chemotherapy when I kept getting infections and I didn't want to keep visiting the surgery unnecessarily!). So with absolutely no sympathy whatsoever for the pain, and feeling like a hypochondriac and with no antibiotics, I left. I didn't feel like bothering the hospital again, although I know I will be in trouble on Monday for leaving it, but I haven't the heart. Back to my hot water bottle and paracetamol. I know the hemolysing is supposed to have stopped, but I feel it is back. I have the shakes and the radiating pain in my jaw which presents when it is back. My chest vibrations too. It could just be that I am coming off the steroids pretty quickly as well which doesn't help. I feel a big pity party coming on.

AIHA AND SPLENECTOMY

Another few months have passed and I am so tired. We managed to get to Wales to see the family in May and it was really lovely. Family really is everything and those granddaughters of mine really know how to make me laugh. I hope they know how much they are loved....my daughter too.

I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.

I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.

BONE MARROW RESULTS

The results of my bone marrow biopsy are in. There is still 10-12% of leukaemic cells in the bone marrow. What does this mean? Well, my doctor calls it a 'good partial response'. What does it mean to me? Disease progression. It means that I still have leukaemia in my body after my last treatment. I didn't expect a complete remission this time, but it is still a disappointment. I had hoped that I might be able to forget my illness for a little while, but it seems not. The spleen question? To remove or not to remove? The decision is on hold at the moment as my doctor is going to ask advice of a world class CLL doctor. The question he is asking is, 'is it appropriate to remove my spleen at this time'. The AIHA is fairly stable and my dose of prednisolone is now 5mg and 10 mg on alternating days. I admit I am still depressed and my spirits are very low, but I am trying to hide it.

NOROVIRUS

Yesterday evening my husband and I went for a meal with friends. It had been booked some weeks before and we were all looking forward to it. Because of the length of time I have been ill and the fact that my immune system is so compromised, my friends know that if they have been ill they must telephone me straight away and then I will not see them until they are completely well. So you can imagine my horror when reaching the restaurant, that after the usual hugging and kissing, one of my friends loudly said that she had been unwell all week with Gastroenteritis! Being sick on Sunday and Monday with diahrrea(yesterday was Saturday) and ill enough to warrant a home visit from her GP as she had collapsed. Norovirus is still infectious upto 3 days from the disappearance of symptoms and she was still complaining of a sore tummy. I just didn't believe what I was hearing! If you have the norovirus you MUST STAY AWAY FROM IMMUNO COMPROMISED people for at least a week.

DEPRESSION

A new year. A time I always thought of as being a new start with everything to look forward to.

But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.

I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.

WHITE BLOOD CELL DOUBLING

21 November WBC 2,700
24 November WBC 4,000
7 December WBC 9,400

Is this a doubling of WBC? Or will it plateau out in normal range? My gut feeling is that its a doubling but I will know on 21st December when I have another blood test. This is such a ******* of a disease. It seems never to be still. I prepare myself for some good news and I get bad. I prepare myself for some bad news and I get good......trouble is that I am an old hand and this and I don't believe the Junior Consultant. I am an emotional mess.

When the counts are reasonably good and my scan is good, my family and friends think I am back to my old self (pre-illness). This is just a paper reading and my body does not reflect this at all. I do not believe for one moment that the AIHA is sleeping....dozing maybe, but if I were a gambling person I would put money on it waking within one month.

TEN YEARS AFTER MY DIAGNOSIS OF CLL

Four rounds of FC and 3 of Rituxan later and it was feared the Rituxan wasn't working as my spleen refused to shink. My doctor told me to be ready to have my spleen removed in the New Year 2010. The AIHA has been up and down for a whole 12 months now and I've been on a varying dosage of Prednisolone. It seems as if the moment the dose drops to 5 or 10mg a day then the hemolysing starts again. Before the last round of FCR I was feeling very tired and ill. Afterwards I just continued to feel sick and couldn't sit or stand upstraight without feeling ill. I didn't want to eat or drink anything either. I was admitted to hospital again on 19 November with Neutropenic Sepsis and back on 50mg Prednisolone as the hemolysing roared in again. That evening I was ready for the body wagon. I felt so ill I would have climbed in myself and checked out. There was much concern among the doctors that the AIHA could not be controlled. My husband was totally worn out with all the worry and so was I. However, 3 bags of blood and several days later and I was feeling more myself (whoever myself is......is it the patient? Where is Soapy in all of this...is she still here? Who is the person I see in the mirror? That person is NOT ME. She is just a shadow who bears a faint resembance to me.

I was discharged after 6 days.
Two weeks later and my doctor is on holiday. I saw a junior consultant who knew nothing about me. He says my blood counts are normal and my CT scan shows nothing abnormal. He also says there is no sign of hemolysing. Why is it that my bloodwork never reflects the way I feel. I still feel weak, shaky and exhausted and a bit of a burden on those who love me.

24 August. The AIHA is back with a vengence. Because I presented with a white cell count of 220,000 (should be about 10,000) I was admitted that day for chemo as an in-patient. The last time I had this treatment it ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC (treatment) for the time being and when the white cell count dropped, to add Rituximab (another type of chemo). I had to have 3 bags of blood transfused before they could start which was a problem in itself. Any transfusion I have has to be irradiated and the blood bank in Bristol was snowed under. It took over 24 hours to arrive with my doctor telling them to get on and 'blue light' it up the motorway. Anyway, the new blood stopped the symptoms of the AIHA and had I no problem with the chemo at 50% dose.
They spoiled me rotten in the hospital, we had lots of giggles, including one about my doses of Sennacot and perhaps a sunami in the loo in my room....... Another was that my potassium was down so if I agreed to eat at least 2 bananas a day, then they would cut a dose of the awful Sando stuff (like 2 tablets of sterident for false teeth in water)......I was never sure if I had ordered my bananas (chemobrain) so at one stage my room looked like a market stall! After 8 days they let me out for good behaviour.

I am back on the steroids (oh joy) and my surgery has supplied me with a blood pricker as my glucose level is higher than they would like.
On Wednesay 9th Sept I learned that the half dose of FC chemo didn't work at all. We were supposed to wait about 4-6 weeks before starting again, but agreed the white cell count is too high (177,000) and best to go ahead with more chemo asap. If we could get the count down, then we can hit on the head with Rituximab). Well, that was last Wednesday.

Early Thursday last week (12.30am) I woke up with chest pain radiating up to my jaw/teeth. I can't believe I just left it, but I did, my reasoning being that I didn't want to go back into hospital - how daft is that? My husband was in the den and I didn't tell him, I just waited for it to pass (what a complete idiot I am) and then funnily enough I went back to sleep. I told him the next morning but the pain was gone and so I carried on as usual. By lunchtime I could feel tightness building so my husband drove me to my GP. No doctors on duty as it was lunchtime! However, the practise nurse took control and told me off (nicely), did an ecg and phoned 999 I was taken to hospital by ambulance where I spent the night in Medical Assessment Unit. This is not my usual hospital as we had to go to the nearest Accident and Emergency dept to where I live. Because of my previous angina I was really worried, especially being due to start chemo again on Monday, but I was discharged late Friday afternoon. They did cardiac enzyme tests, chest xray etc but it is not believed to be a cardiac problem, just treatment, CLL, AIHA etc etc.

By Monday 14th SeptemberI was a bit of a mess, lifeless, exhausted and shaking, I can't begin to explain how I felt. I went to my usual hospital to start the full dose of chemo. I have chosen to have this by the iv method and it went well, so far anti-sickness pills are working wonders and I haven't been to see the Big White Chief (but I won't crow too soon). When I explained how ill I have been feeling, my doctor told me that my leukaemia is 'very active'. Can you just imagine all those little cells being very active? Doing what? running marathons??? I finished the last lot of chemo this morning for this cycle. We've been going in every day which is very tiring for both of us. At least I get to lay on the bed and play the lady. We have these great electronic beds, but yesterday I pushed the wrong buttons and the bed ended up in a V shape with my bum down in the V. Actually it was quite comfy until a nurse rescued me and got the bed rebooted. My lovely man has been coming and going and he's totally worn out. I'm not sure how I would react if the tables were reversed. Strangely enough you might think I would get a little depressed here, but | am feeling confident (must be the cyclizine which I believe is a choice of drug for some addicts).

If my WBC is down to 22,000 on Monday 21st September I am to begin Rituximab. Wish me luck.

Another Hospital Stay

A quick update….. I saw my doctor in August and treatment (FC) was planned to start 25th August. I hadn’t been feeling well for a couple of weeks and the blood tests pre-chemo on 25th showed my old friend the AIHA is back with a vengence. Because I presented with a WBC of 220,000 I was admitted that day for chemo as an in-patient. I have had FC twice in the past, the last time over 2 months which ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC for the time being and when the WBC drops, to add Rituximab. I had 3 bags of blood which stopped the symptoms of the AIHA and had no problem with the chemo at 50%level. However, I am anaemic (although now upto 10 which is good). My WBC is going completely haywire and from 1st Sept to today, 4th Sept, has jumped from 121,000 to 177,000 which is an average climb of 14,000 a day!! I have another appointment next Wednesday and again the following Monday. After the Septacaemia last time we switched to Campath and I think this may be worth thinking about.

Having said all that, I am feeling better than for some time. I have decided to just stop worrying about it all (from poem Desiderata) "and whether or not it is clear to you, no doubt the universe is unfolding as it should". I had 8 days in the hospital with so much TLC and laughter. My medical team are the very best you can have. This is not a political post but I do have to say that my experience of the NHS in the Uk is of the very best, despite the bad press it often gets.

Starting Treatment Again

In less than 2 weeks I have lost myself somewhere. In less than 2 weeks I suddenly have no energy, rapid heart beat, feeling of concrete in my arms and legs and everything is such an effort. Even small things leave me breathless. The AIHA is taking me over again.

On Monday I start treatment. It was to have been Campath, but it has now been decided to try FC again with Rituximab later. However, this morning my doctor phoned to say that my Creatinine test is low and although we are still going ahead with the treatment it will be a half dose. I am relieved as the last time FC was very toxic for me.

So the question is, how do I mobilise myself? Well meaning friends and family tell me I have done this before, and so I have. Three times. Three times with two remissions which have been good. But I have been warned to expect hospitalisation with infections and that this will be a very rough ride. My husband is very upset and we are both frightened. However, my hospital is excellent and the staff don't change much. I am part of the furniture there and sometimes I like to think I am a 'favourite patient'. The staff are so kind and caring.

Humming

Time is flying by and no hospital appointment until the 19th when we will discuss the AIHA/treatment question again.

The effects of the steroids are well documented by others, but I have never read anything about what I describe as a kind of 'humming' or 'hovering'. When I wake in the quiet of the morning, I find my chest is vibrating very, very gently (as if waiting for takeoff) with a kind of silent humming. It's not an unpleasant feeling at all, just something I haven't felt before. It's not like my clumsiness where I drop everything in sight because the steroids make me shake so much. This is very different. And I wonder if this is a preparation for my leaving my body at a later stage? Is it my energy/ soul/ light/my essence? Now I don't find this scary because as I have blogged before, I believe I will go on in another life/world/whatever when I die, but it is very comforting for me to think this. I wonder if it will stop if/when the steroids stop? I will let you know.....

Diabetes

I have CLL, I have AIHA and now I have steroid induced diabetes and I am fed up. I have been up most of the night having a Pity Party. Believe me, its a waste of time and doesn't make you feel any better to have these crying jags, but its not easy to turn off once it starts.

I saw a world class CLL expert on Wednesday to talk about joining the RFC +/- Lullilimub trial. However, due to the AIHA it is no longer available to me. I am relieved as I felt this to be such strong treatment.

Choices now are RFC if we can get funding for the Rituximab or Campath. I have used both of these treatments before and not really keen to get started again. On Monday I will have a chat with my consultant and decide. The decision has been a while coming, what with holidays, and other things and it will be good to make the decision and stick to it. Then maybe I will relax a little more. I would not like to be turned down for lack of funding, but trust that the 'universe is unfolding as it should'.

AIHA

I have AIHA (auto immune hemolytic anaemia) and it seems my white blood cells (and I have thousands of them) are killing my red cells as soon as they leave the marrow. This has to be got under control before I start any treatment. My doctors tell me that they want to schedule treatment for the first week in January which is only a few weeks away. The problem is which treatment shall I have? I am inclined to try Campath again to hit the high white cell count and then Rituximab but as I use a UK hospital, maybe funding could be a problem.

It is my 61st birthday on Monday and I will be at the hospital! Then again on Wednesday at the Royal Marsden in Surrey. How I do see life and know how to enjoy myself!

I am having steroids to help with the AIHA which meant I spent yesterday in a heap of tissues. Feeling better today thank goodness. Fancy not being able to celebrate your birthday with a small glass of wine........ Maybe I'll just smell it :-)