UK CLL Forum, UKCLLFORUM

"RITRAT" JOURNAL

INTRODUCTION

This is the journal of one of our members who has just started treatment in the UK's first trial of LFCR verses FCR. The official description of the trail reads: "A randomized, open label, multi-centre, phase 2 study to evaluate the safety and efficacy of Lumiliximab in combination with Fludarabine, Cyclophosphamide, and Rituximab (LFCR) versus Fludarabine, Cyclophosphamide and Rituximab (FCR) alone in subjects with relapsed Chronic Lymphocyte Leukaemia."

The journal will record the story of "RITRAT", his alias name, as he travels through this demanding treatment over the next 6 months. The journal will be updated on a frequent basis by his wife "Spouse Mouse", so please check back.

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THE JOURNAL OF "RITRAT"

GENERAL UPDATE

Ritrat has been unwell lately and will continue his journal once he has recovered.

ROUND 3

30/04/08 – 7/05/08

In hospital with an upper respiratory tract infection, still on intra venous antibiotics. My temperature remains high for 3 days and I am coughing almost continuously.  Friday night I was so hot that sweat poured off me like a tap being turned on. Wife and daughter arrive Saturday afternoon and I suddenly start to feel better.  When the nurse comes to take my temperature it is nearly back to normal. The antibiotics are stopped on Tuesday morning. They didn’t want to take any chances so I stayed until Wednesday evening when my Neutrophils reached 1.3. It was great to be home and I managed a long standing invitation to go out for supper in the evening and have a drink or two!  The hospital was wonderful. I had my own private room with shower, toilet and flat screen telly. It was just like the Holiday Inn except for the people coming in at regular intervals and sticking needles in me.  I still have a bit of a cough but hope to be well enough for the next cycle of treatment.

26-29/04/08

Cough has become a lot worse and temperature high. By Monday my temperature is 38.7 and I am checked over by the local GP. Wednesday morning my temperature has reached 39.5 and my wife rings the hospital. Spend the rest of the day in the clinic waiting for the lab to analyse my blood before they decide to admit me. Neutrophils at 0.3 Still in out patients I am given a cocktail of intra venous antibiotics before being transferred to the ward.

22-24/04/08

The FCR treatment continued uneventfully although the derelict pub across the road exploded on Wednesday injuring 5 people, fortunately not seriously. The car park and main road outside the main entrance was strewn with debris. The news said it was the result of a gas leak. It was chaos leaving and entering the hospital for the next two days. I developed a cough on Thursday but thought nothing of it.

21/04/08

Returned for blood tests after a few days away visiting a daughter in Portsmouth. I was feeling very well and relaxed. Neutrophils at 1.3. There was some discussion on whether to continue the treatment on Tuesday. It was decided that it was safe enough.

9-11/04/08

Third injection given at the Doctor’s surgery. Went for a further check up on Friday. Neutrophils now at 1.0. I was given a fourth injection and told to come back a week on Monday

8/04/08

Went to the doctor’s surgery for the second injection. Was feeling very ill and it was decided that I would ring the hospital first. Spent the rest of the day in hospital while they decided whether I was having a reaction or had caught a bug. Eventually I was given the second injection and sent home. I had caught Noro virus.

7/04/08

Went for a mid treatment check up. I was Neutropenic with Neutrophils at 0.3. I was given an injection of Granocyte to boost my white cells with two more to take with me. That night I was suddenly violently sick and with accompanying diarrhoea.

ROUND 2

28/03/08
Back to the hospital for 12.00am. I am feeling pretty ropy. I have been up every hour during the night for a pee and now I am beginning to feel queasy. Blood pressure is back to 145 over 79. My blood counts are: white count 4.7, platelets 53, neutrophils 1.8, red count 14 point something.

This time the nurse knows the back of my hand better than I do and finds a good vein the first time.

I feel fine after the anti sickness drug is given again and I receive the F and C.

Out again by 1.30am feeling OK.

Drugs to take between treatments: Fluconazole, Aciclovir, Co-trimoxazole and Allopurinol. These are anti-biotic, anti-viral and anti-fungal drugs plus one to stop me getting Gout.

27/03/08
At the hospital by 12.30am. All is ready and straight in for treatment. This time the nurse finds a good vein and I don’t feel a thing. F and C preceded by a blood test. An anti-sickness drug is administered before the infusion. My blood pressure is 102 over 59, Olympic athlete standard! (I wish).

All is done in less than an hour. Feel great.

26/03/08
Today is the big day. The full dose of Rituxan plus Fludarabine and Cyclophosphamide afterwards. My blood counts are: white count 4.2, red cells ok, and platelets 61. I am there raring to go at 9.00am, but there is a problem. I am all set up with the canular at 10.00am but no Rituxan.

I am examined by the Consultant’s Registrar and his verdict is that I am doing well. I still have lumps in my neck but they are much smaller and softer. My spleen is still swollen but to about half the size it was before the treatment started. Altogether the news is good.

By 12.00am I am getting restless. The research nurse tells me that the Rituxan has been prescribed by the doctor but the pharmacist disagrees about the correct dosage. Eventually they ring the Drug Company and all is resolved. At 1.15pm the Rituxan arrives. I notice that the drug sheet has been altered 3 times. I hope they are right this time.
 
The nurse has trouble finding a vein on the back of my hand that has not been well used before. The first canular fails and the search is switched to the other hand. This time it is successful but painful. I am given anti-histamine and a steroid to counteract any adverse reactions from the infusion. Half an hour into the infusion I get a bad headache. This is followed half an hour later by nausea. I am thinking it will be the Rigors next but the symptoms steadily decline. The research nurse is monitoring me every half hour, blood pressure and temperature. My blood pressure steadily falls from 145 over 79 to 123 over 69. My temperature slowly rises.

I listen to my iPod to drown out the sound of someone in the next bed having a bone marrow biopsy. Not my favourite sort of thing at all but I understand the sounds from experience.

About an hour and a half from the end of the infusion my face has a burning sensation and I develop an itch like something crawling under my skin on my neck, chest and back. The research nurse says I have gone bright red. The doctor arrives and examines me. He prescribes another dose of anti-histamine. By the time I receive it the symptoms have started to subside.
Another blood test is taken from the crook of my arm and then straight onto the F and C.

All finished by 5.45pm and home again.  I feel fine all evening and have a good nights sleep.

25/03/08
I have been feeling very well for the last 2 weeks and today I am back to the hospital for the second course of treatment. Today they just take a blood test to calculate the Rituxan dose for the following day. Home in time for lunch.

ROUND 1

10.03.08
Ritrat went to the hospital this morning for blood tests. We were treated as unimportant today which was actually a good sign. Didn't see the research Doctor but the news was good. Ritrats Platelets have gone up from 43 to 81 and his White blood count is down from the high 60's to 5. Everything seems to be going well. Ritrat talked to a gentleman who had stem cell treatment for Myeloma in 2004. He comes once a month for some chemical, and he is working and is very well.

02.03.08
Ritrat is taking tablets to combat nausea and they are working. Today is Mothers day so the family arrive for dinner. Ritrat spends some time in the conservatory with The Sunday Times but joins us for dinner. Losing weight but not his appetite.

03.03.08
Research Nurse phones to see how Ritrat is. Tells him his platelets are low at 40 and to stop taking aspirins. I go for a swim three mornings a week before Ritrat gets up. He has resigned from the gym as he hasn't the energy and we think he could pick up infections there. He says he is going to walk down for a newspaper but tends to sneak off in the car. When the weather is better we are going to have a gentle cycle along the canal path.

01.03.08
He had to get up every hour and a half to go to the loo. Has been told to drink a lot and we are drinking lots of soft drinks and green tea. Losing weight and his stomach and neck feel softer.

29.02.08
Short day with just chemotherapy. Ritrat looked pale when he came home. We went out to the pub with friends and Ritrat enjoyed steak, chips and mushrooms and managed two pints of beer.

28.02.08
Has Rituximab and chemotherapy.

27.02.08
Ritrat goes for chemotherapy. One is administered into a vein via a line from a huge syringe (10 mins). The other takes half an hour.

24.02.08
The grumpy driver cheered up when he heard that the M62 and M1 were closed due to high sided vehicles blowing over and he had avoided gridlock.

Ritrat feeling O.K. Took anti viral and antibiotics etc. He then said his eyes had gone funny. He suddenly realized why. A lens had come out of his glasses. He found the screw and now his eyes are back to normal.

At one o clock I feel the earth move. "What on earth was that" we say simultaneously. We realize it is an earthquake. "Well that’s the only time you will feel the earth move for a while "says Ritrat wrily.

25.02.08
Suni arrives on time to pick us up. Ritrat sits in front and chats all the way to hospital. We arrive feeling quite positive.

The senior research nurse comes and has a little chat. He looks very relieved when Ritrat says he is all ready to continue with the treatment.

It is now 11.30am and the infusion is started again. Ritrat says he feels like John Hurt in Alien waiting for something to happen. I stare at his rather large stomach and spleen with apprehension. He says his sinus feels 'lit up' but he sits up and the feeling goes. He then has a prickly pain in his gall bladder but that quickly feels O.K. (He nearly had to have his gall bladder out three years ago, but didn't like the consultant's attitude. It has been fine ever since, and I try to give him a good diet.)

Everything settles down and after a while Ritrat does a waltz down the ward, with the infusion machine, on his way to the loo.

There are four day beds and the nurses are part of the dance as they tango backwards and forwards with the one and only blood pressure machine. Ritrat arrives back plugs himself in and comments that his machine has super market trolley genes. More like Boss mouse genes, I remark. "Has a mind of its own!"

Oh dear Ritrat has sat on the panic button, for the second time. Two nurses come rushing. He apologies profusely. Just testing!" 

I go down the stairs (not the lift) for a break. I look at the acres of empty space in reception I think it would be nice if there was a drop in centre, with comfy chairs and tea and sympathy from friendly volunteers. Table tennis, a gym and a pool would also be great, but I'm getting carried away!

Back to the ward a friendly girl brings us tea.  Ritrat feeling hot so nurse finds a fan and takes his temperature.

The sun is shining as we look over the city from the third floor.  We feel so much better about everything than we did yesterday.

After four hours senior research nurse arrives to turn off machine and check that all is well. He makes us feel important, which can't be bad.

We have to wait an hour now, to check all is well, and take more blood. (I think there are vampires to feed in the bowels of the hospital.)

Suddenly we notice two infusion machines and two fans in our corner, pity that the one and only blood pressure machine is not breeding!

The research nurse sorts out anti biotic and anti viral drugs for Ritrat to take home as for a while he will be very susceptible to infections.

Brave a hurricane outside the hospital as taxi and ourselves lose each other. The research nurse beyond the call of duty reunites us and taxi with a different rather grumpy driver. It will be great to get home.

24.02.08 - The Night Before and the First Day
Ritrat and I didn't sleep much last night, we were both apprehensive and consequently had gin and tonics before dinner, wine with dinner and Ritrat drank a bit during the evening to take his mind off the morning. Then we lay awake wondering if it would upset the treatment.

We got up early and waited for the taxi to arrive. It was late and I walked down the lane to meet it. Suni shot past my waving arms and then came back all apologies. We arrived at the hospital an hour later. He is a really cheerful chap and is going to pick Ritrat up for all 39 journeys. (paid for by the drug company) Great!

We went up in the lift with a silver haired city type with a pristine white shirt. He sat next to us in a day room, had a quick infusion and left. Ritrats research nurse took him off for more blood tests and then brought him back to a bed in the day room to wait for the Doctor. Ritrat use to hate needles but is now totally used to them.

The Doctor, a very nice chap, is a leader in research on CLL, so I shall call him Doctor Ritman. He examined Ritrat and pronounced him fit to have the treatment. It is bad enough that Ritrat insists on wearing old mens scruffy vests, but why on earth has he put on such an old off white shirt today.
I should take notice of the soap powder adverts! Ritrats rationale when the Doctor has gone is "It might get messy". Never mind tomorrow it must be a designer shirt!

Time seemed to be moving on. We are aware there are phone calls backwards and forwards between the research nurse, the pharmacy and the drug company. Finally the nurse tells us to go and explore the new hospital and have lunch. Ritrat has a large piece of carrot cake, hoping he won't regret it later.

Finally at 1.15 pm he is given a 'premed' and then a saline drip. At 2.00pm the research nurse finally brings the pack of what looks like water but probably costs as much as pure gold. We both feel very nervous as it finally goes into Ritrats blood stream. After twenty minutes Ritrat starts to feel nauseous and his blood pressure drops. The research nurse turns off the infusion to let him recover. The atmosphere becomes tense, I suspect the nurse is worrying as the drug has to go into the blood stream slowly and it takes at least four hours. After ten minutes, he turns it on again. The Research Nurse puts the panic button beside Ritrat and says he will return in a few minutes. Ritrat reads and listens to music. After a few minutes he stops reading, then he turns off the music. I feel very hot he says. Suddenly he presses the panic button. I feel really cold he says as his body starts shaking uncontrollably. Research Nurse turns off the infusion and rushed off to get a Doctor. I try to reassure Ritrat, there is panic in his eyes.  The on call Doctor arrives, looks worried and tells the nurse to give Ritrat a steroid injection. Gradually the shaking subsides and Ritrat starts to feel better.

Ritrat and I look at each other. He says he felt the same as when he went into shock before and the emergency team had to come. Although this time his breathing is fine and he his recovery has been much quicker. We both feel depressed. There has been such a builds up to this treatment and we both think that the trial will have to be abandoned. The senior Research Nurse arrives, his is obviously a counselling role. He is very easy to talk to and he tries to reassure us.

Ritrat is relieved though when the decision is taken to stop the trial for the day. The team have decided that to carry on they would have to find Ritrat a bed for the night. My heart gives a lurch as most of the drug is thrown into the dangerous incinerator bin (could it be £4,000) down the drain!
Research Nurse orders a taxi and we go home feeling subdued, even the driver is morose. Anyway at least we are after the rush hour traffic and are home in time for Coronation Street.

After a nice casserole Ritrat goes on the internet. We had been told there could be side effects after the first dose but we didn't know it was such a high percentage. It also says that rigors, nausea and low blood pressure are quite common and can be controlled by drugs.
Suddenly Ritrat and I feel better, we want it to work, and this reaction isn't that unusual.

RITRAT - Born 1945
Ritrat and I met thirty years ago and got married the same week as Princes Diana and Prince Charles. They had everything going for them, we had nothing. Ritrat was a quiet, serious young quantity surveyor who liked music and books. I, on the other hand had three daughters, two ex husbands and a battalion of friends and family. I was also nearly a decade older. It was all irrelevant we were, and still are totally compatible.

Ritrat supported me, giving me space, helping with teenagers, cycling round Bejing, or diving off the barrier reef. We even moved in for a while with my mum whilst she had a bungalow built in the garden and then bought her house. Sometimes in quiet moments I would think "This is too good to last."  It was! Ritrat was diagnosed with CLL.

Since Ritrat agreed to the trial in the last month he has had a battalion of blood tests, C.T. scans, bone marrow biopsies etc. We postponed the start of treatment so that it would not coincide with our yearly July trip with friends to Spain. We are determined to go. We also went to the sea side at half term to stay with Hifly mouse (eldest daughter). We had to cancel a Jet2.com flight to Alicante and were due to travel on the 3rd March 08. They not only won't return any money. but had the cheek to charge £15 for a cancellation certificate.

Ritrat has looked at the Patients Profiles on the website today and found them very interesting.

Background to RITRAT
Ritrat by Spouse Mouse

This is the story of my husband who was diagnosed with CLL approximately seven years ago, although in retrospect he was showing symptoms such as nights sweats for at least two years before that.

He went to the Doctor with lumps in his neck and was sent for blood tests before being referred to the oncologist. The consultant was on long term sickness and a locum registrar gave us the diagnosis. We were pretty upset as the word Leukaemia was scary. After sitting in the waiting room for two hours, I walked into the startled registrar's office and demanded an explanation. She told us it was the best sort of cancer to have and "just go and get on with life."

We went home and decided we would live for the moment and enjoy ourselves going on holiday, entertaining friends etc. Consequently we don't remember much after that until he was asked if he would like infusions of gamma globulin. He went to hospital once a month for half a day and during this time he was very well, had no infections and went back to work. Unfortunately one day he had a bad reaction and decided not to have any more. He carried on working and felt quite well for a couple of years.

The last two or three months he hasn't had as much energy, his spleen and lumps on his neck are bigger and the mild chemotherapy pills stopped being effective.

He was therefore referred to a leading research Doctor who specialises in CLL.  The Doctor asked him if he would like to take part in a clinical trial funded by a drug company. They are looking for twenty five volunteers in Europe who are no longer in remission. The test is randomised, half will be on FCR (Fludarabine, Cyclophosphamide and Rituximab), the other half will be on FCR plus Lumiliximab (LFCR). FCR has been used quite a lot in America to good effect, but as it is very expensive, currently it is only used in Europe in trials.

My husband agreed to be a "two legged research rat" hence the name Ritrat.