What to ask about the hospital

Topic Made On: Apr 09, 2009 03:22pm

Gender: Male
Posts: 5
Having a read a few notes on this and other sites it seems, to me, that a lot you are pretty well informed about how your bloods are and how things are progressing.

When I go to the hospital I get weighed, asked about the sweats and advised my blood is okay a bit general chit chat and then I am out the door.

What do you all think I should be asking?

I don't want to be overloaded with too much jargon and technical stuff but just a basic nuts and bolts overview would help.

After nearly 3 years of being diagnosed with CLL and despite reading on web sites I am still not that clued up on my current status .

Whilst, I'll admit, I am no genius I do still feel a bit in the dark about it all.

Yes, it could be that the hospital may think that if there is something to tell you we will and until then you don't have to get too concerned about the technical side of things, and that may be no bad thing but I feel I'd like to know a bit more.

For example I know I see a specialist (but I don't really know what they specialise in and how closely they work with CLL as opposed to blood disorders in general).

I suppose I should be more pushy but I realy hate even being in a hospital and I get so worked up I just want to get out as soon as possible (I'm like this even if I am visiting people and to my shame I know that's wrong and I missed precious time with my late father because of this).

So do you have any ideas about the sort of things I should be asking?

Replied On: Apr 09, 2009 10:23pm

Gender: Male
Posts: 24
Well I felt the same but also find it confusing. I started to try and get the consultant to tell me absolute lymphocyte counts and white counts and HB counts. But she ends up saying - let me worry about your results and I will soon let you know anything that needs knowing - or words to that effect. I do monitor my white count - or is it my lymphocyte count. You see it does get confusing. So try looking at the information sites that are around which tell you all about blood results. Its on the forum somehere.
As far as consultants are concerned I was also going to my local NHS and not getting much time - just a - your fine come back in x months. I decided to get my Dr to refer me to my nearest specialist hospital - Royal Marsden in my case. Thankfully I dont need such specialist advice - yet -but it is a small comfort to know that I am being monitored by a leukemia consultant. You can under NHS rules request such a referral if you want. Or maybe a better balance is to stay local as its less to travel and if things look worse then ask for a referral. But its true too much knowledge is a dangerous thing. See my posts re prognostic indicators - now I know my likely outcome and its not good!

Good luck

Replied On: Apr 10, 2009 04:32pm

Gender: Male
Posts: 24
Hello GAGLA.I'm with you on not liking hospitals and being uncertain about all the information about that remarkable substance called blood. Probably the most worrying two words in the Engish language are "Don't worry" but I am sure we are all in good hands. Did you watch the Newsnight special prog. the other night about Cancer. They said most cancer care in the UK was not up to the best world standards - BUT a knowledgable chappie said that NHS leukaemia care was as good as you'll get anywhere in the world.
Ronnie - have you looked up the Mayo clinic CLL trials. Your outlook could be better than you think.
Best wishes,

Replied On: Apr 12, 2009 12:23pm

Gender: Male
Posts: 33

I appreciate your frustrations. Refusal to disclose information always feels patronising.

You could ask to be sent a copy of the consultant's letter to the GP.This is considered best practice in many hospitals.If you get no satisfaction that way then you could get the results from your GP who might help you interpret them.


Replied On: Apr 17, 2009 04:57pm

Gender: Male
Posts: 5
Thanks for the advice.

Replied On: Apr 18, 2009 10:16pm

Posts: 37
[font=tahoma]Although I have not made many contributions to this forum, I have been reading all the articles sent and find them particularly interesting. I also have a case history of CLL. This is a long note for which I hope does not bore anyone but I have tried to address some issues raised.

I was diagnosed in 2001. Purely by chance, I was referred to a haematology research specialist in a London University. I was seen by this person in his capacity of an honorary consultant. After a period of wait and see, in 2002 I was prescribed Chlorambucil which had an almost immediate and positive effect but was very short lived. In 2003 I went on to Fludarabin and Cyclophosphamide. The result was positive and after a year of monthly visits, I was declared as in a good partial remission. In all this time, and even now, I have taken Septrin and Acylovir. I developed a herpes zoster many times and upped the Acyclovir to combat it. My bloods, in the meantime, improved and the vital elements, platelets, wbc, rbc and others reached a satisfactory level. In 2008, my partial remission reversed and a CT scan showed an increase in the lymphocytes. There was also some concern about the result of the bone marrow aspirate, the fifth at that time. I was asked to consider a trial including a chance of having the new drug, Lumilixamab. However, I had too many treatments to qualify but was put onto the Rituxamab (intravenous) Cyclophosphamide and Fludarabin which I started in August 2008 and finished in January 2009. Halfway through the treatment my bloods improved and a further CT scan showed a 75% improvement with the lymphocytes. With both chemotherapy treatments, I continued to work with only a few days off altogether towards the end of the sessions to recover from tiredness.

In March 2009 I had a further CT scan and Bone Marrow aspirate. The lymphocytes had virtually disappeared bar a few tiny nodules and the aspirate showed ‘no evidence of CLL’ I am now back in remission. Several other options where discussed such as a bone marrow transplant which, in the light of a poor success rate, I turned down on the advise of my consultant.

Several comments have been made related to the attitudes of consultants, approach to the disease and coping at work. Non of these are easy and I have to say that I am no different in this respect What I did do, nevertheless, is to take on board the existence of the disease and made the decision that I am going to be the victor and not the victim. To do this, I was open about the facts with my work colleagues, friends and family. I also took time to understand the disease and what was happening in my system. I made sure that my Consultant gave me all the answers that I needed and his thoughts about progress, new treatments, future life expectance and so on. My sessions with the consultant would often last an hour. As far as work was concerned, I was made redundant from the hospital that I worked in 2007. I decided to hang my boots up, but an offer not to be turned down came my way which I took. After eighteen months I joined another hospital where I am now.

On to stress, I made the conscious decision that stress was not going to be allowed. The redundancy, the existence of the disease and all the other pressures had to be a side event. Staying fit and eating properly were important factors to keep the disease down. Also the very able support of my wife, who herself had a cancer twenty-eight years ago, gave me the reason for ensuring that I coped with the rigours thrown in my direction. My well being is more important than anything else.

On reactions to treatment, with the Rituxamab, I had non at all. The Fludarabin has created some skin irritation that is currently being investigated but is not so serious to worry about.

At work, the CLL disease is covered by the Disability Discrimination Act (DDA) and employers must respect the right of the individual to reasonable access to good working conditions and time off to attend to treatment or rest as needed. I did not use this route, but it is available should it be needed. In my interview for the current post, I made no secret of my condition and the fact that I was on a six month treatment course. I now work in another hospital with a fairly intense client group.

On to the disclosure of information, a patient has the right to see all correspondence related to diagnosis, prognosis and treatment. I made sure that copies of all correspondence, tests and scans were sent to me. It is a fundamental right which should be used. The consultants should not hold back information if it is asked for in clinic. Equally they should not patronise by suggesting that they do the worrying!

Understanding the disease is complex and there are many websites that are available. However, I believe that only a few should be chosen, local where possible, to avoid alarmist comments on the disease.

I am now sixty-one and the expectancy is that the recent treatment should give me up to five years before there is a relapse. Not to be sniffed at, because the nature of this devil can change at any time.

Again, I apologise for this long note, but I do hope that a crumb of comfort can be gleaned from it when tackling the issues surrounding CLL.

Replied On: Dec 21, 2009 11:24am

Gender: Female
Posts: 26
Your post is most interesting and reasuring, I was diagnoised by chance in October of this year, I had collapsed at home and taken to hospital, where routine blood tests confirmed CLL. I was and am scared, I'v seen the consultant Hemo. at the local hospital twice now and again in September, by bloods (white) seem to be staying at around 34 so I am being told to watch and wait. This is both frustrating and reassuring at the same time. However, I lost my husband to cancer only 3years ago he was diagnoised very late and had no chance for treatment, so you can see why I am anxious. He was only 52 when he died, I am now 55, I will ask for ccopies of the results just to keep for a record, thanks hope you are well

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