UK CLL Forum, UKCLLFORUM

Starting Treatment

Topic Made On: Mar 03, 2008 04:27pm
Dave Rodgers

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Could someone pleese give me some advice on what the indicators are for starting the treatment of CLL. I fear I am reaching that time that I need to embark on treatmnet, but obviously do not want to start before the time is right. My ONC is pushing me to start in view of high white count of 90,000. Generally I feel fine, odd day here and there I am not at my best, but no other signs to speak off.

Thanks

Dave




Replied On: Mar 03, 2008 06:32pm
Gillian

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Hi Dave, there's a new post in Research Papers on this site. It's the latest international guidelines (just out) and the UK ones. Terry Hamblin always says 'treat the patient not the numbers' so unless you come under one of the reasons for starting treatment (B symptoms or fast ALC doubling time etc) I would ask exactly why your haem/onc thinks you need treatment now. It seems to be that treatment isn't normally considered just because your WBC reaches a certain number - there has to be some other reason unless the counts are excessively high. I believe some experts say over 100 but some go much higher with over 200. As usual, it depends on who's talking. Have you read The Professors Posts - quotes by Terry Hamblin. This is a bit of it:
''Very high white counts seldom occur alone. I have managed 2 patients with
white counts over 400,000 and both suffered from severe immunodeficiency. The
patient with a count of 1.3 million about whom I was told, required treatment
for other reasons, but had no problems with hyperviscosity.

Although hyperviscosity is a very rare complication in CLL, it obviously can
occur. What needs to be stressed is that we treat the patient, not the white
count. If the patient has symptoms then treatment is indicated. It is not
sensible to start treatment just because the white count reaches 100,000. But if
symptoms occur then treatment should begin even if the white count is
20,000. The difficulty is in assessing whether the symptoms are due to the CLL
rather than an incidental condition, and whether they are svere enough to warrant
treatment that might have significant side effects. This is one of the
things that the doctor and patient must discuss together.''
If I come across anything in particular I'll post again. But there's others on here who know more than me. Have you seen a CLL Expert? Gillian




Replied On: Mar 05, 2008 06:59pm
Dave Rodgers

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Hi Gillian, the documents you refer to do make interesting reading, but its still taking time to get ones head around all the terms and meaning. I think I need to reconsider my position and talk some more to my local ONC who is treating me at our local hospital. Quite clearly he is not up to the latest ways.

I am still in denial in all of this which makes things a bit more difficult, I suppose I just need more time to get use to the diagnosis and subsequent adjustment to my life. I do admire all of the people on this website that can so easily talk about all of these things associated with CLL.

Dave



Replied On: Mar 05, 2008 07:51pm
Gillian

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Hi Dave, don't be fooled by my writing on here - some days I can't face thinking about it at all. But after a few months I've found I have more good days than bad so I take advantage of them! I, too, have a rising WBC problem with no other real symptoms. I tend to bury my head in the sand as much as possible but, for me, it is crucial to see a CLL Expert because they know and understand the latest position on our condition. The local people may not always be up to date on absolutely everything they deal with. Understandable when there is so much. From what I understand, some of them tend to jump the gun when considering the treatment or waiting options in CLL. I know all of us are different and you may not want or feel like seeing someone else, but most local specialists will refer you for a second opinion to an Expert if you ask. If not, ask your GP to do it. At least then you will have two opinions and one will be from someone who has access to the latest guidelines etc. It may help set your mind at rest a bit. I also find it difficult to try and keep up with all the info out there. Trying to remember it is worst! I find it easiest to just look at the bit I need at the time and ignore the rest for another day. When considering treatment because of high counts I think they will also look at how fast they are rising and over what period of time. Also whether you have any other symptoms. And if it is decided that you do need treatment then you can listen to their plan of action and go away and look into it before you make any decisions. That way you may not feel so daunted by it ( that's what I need to do but it may be different for you - we all handle things and cope in different ways ). Are you in the Midlands? If so there is a CLL Support meeting on the 3rd April if you fancy going. Do let us know how you get on and fire away with questions. I'm by no means the most knowledgeable person on here but there are lots of people out there who care and will try to help.
Wishing you well, Gillian



Replied On: Apr 08, 2008 08:43pm
ronnie

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quote - it is crucial to see a CLL Expert because they know and understand the latest position on our condition

I have decided I would like to see someone who specialises more in CLL than the array of consultants I currently may get to see on NHS (its a different one every time and they dont want to see me for 9 months) Obviously as I live in the south Prof Hamblin comes to mind. I have healthcare via my company BUPA scheme and after a phonecall to them they say they will allow me one consultation if I am refereed by my GP. Do you know if its also possible to see Prof Hamblin as an NHS patient?
Also can anyone give me his contact details in case my GP doesnt know his details.
Thanks

Ronnie



Replied On: Apr 09, 2008 12:14pm
Robert Cork

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Ronnie

I am sorry to tell that Prof Hamblin fully retired from NHS and Private practice about a month ago.

The south was the Centre of Excellence for CLL, but that has now shifted to the Midlands. So getting an expert in the South is a problem, I know because I have just been through the process of changing consultants.

You might like to try:

Dr David Oscier Royal Bournemouth General Hospital, Castle Lane East, Bournemouth. BH7 7DW 01202 704790

or

Dr Estella Matutes The Royal Marsden Hospital, Fulham Road, London. SW3 6JJ 020 78082609

Regards

Robert



Replied On: Apr 30, 2008 11:05am
ronnie

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Thanks for the reply - a bit of a blow as BUPA and my GP agreed to the referall. He had already written a letter so having chased that up I now find he has to refer me again. I am told by Nuffield that Dr Sally Killick is now taking over Prof Hamblin patients. Anyone heard of her? Google has a few entries but she seems to be Heamatology in general rather than CLL.
Who have you changed to Robert may I ask?



Replied On: Apr 30, 2008 03:42pm
Robert Cork

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Ronnie

I have changed to Helen McCarthey, who is now the Royal Bournemouth's expert on CLL. She is very young, but has an excellant knowledge, bedside manner and will afford you a lot of time.

My principle reason for going with her is that she spent a years sabbatical at MD Andersons in the US and knows how to look after patients that are receiving RFC as a treatment.

She is seeing me as a private patient, but she is not BUPA registered! So we have developed a workaround on this point which is very simple. I can let you know more if you need this.

Hope this helps.

Regards

Robert



Replied On: Apr 30, 2008 04:21pm
ronnie

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yes Robert would love to know how to get round her not being BUPA registered as I will need to call them and tell them Prof is now not available. You can email me if you prefer rgreen@hbase.com

Thanks again



Replied On: Aug 16, 2008 05:11pm
mandy j

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Hi Everyone,mandy j here, after seeing my consultant on thursday, I am going to start treatment this thursday! On monday I go in for the day for immunegloben, as my immune system is very low [hence all the sores!!!]
And also my spleen and stomach glands are swollen, they found this out from results I had of a scan in december! Anyway quite worried but I'm positive and will take it as it comesand get through this with the help off a good family behind meespecailly my husband!!Will keep you informed M



Replied On: Aug 16, 2008 08:30pm
Eileen

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Good luck Mandy

Will be thinking of you next week hoping all goes well. Hope you got answers to all your questions.

Take Care

Eileen.



Replied On: Aug 27, 2008 05:33pm
mandy j

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Hi Everyone, well started my treatment, took it ok, was only 9n hospital for thursday then home and back again friday for i.v. Only took 2 attempts to get the vien!! Anyway had a rough day monday after finishing tablets sunday, and have continued to feel a bit sicky but have kept taking the anti sickness and they seem to have worked, start the 5 day jabs tomorrow then free till next dose sept 18th but 14th is a day for the immunogloben, my chemo is Rituximab I.V. Fludarabine tabs and Cyclophosphamide tabs, 16 tabs all together, as well as the 12 i already take for my heart and different things, and also the steroids are now being reduced as i have reacted well to them well my blood has! as for the sores i am waiting for results off swab tests, still getting better but breaking ulcers every now and then!! Hope you are ok Robert, will keep in touch Mandy j



Replied On: Oct 03, 2008 07:09pm
mandy j

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Hi Everyone, just to let you know I have just been discharged after 12 days in hospital! I went in with a temperature of 39.9 and was found to be nutropenic so spent 5 days in issolation and being given constant iv antibiotics, and feeling very poorly anyway they eventually found i had a nasty virus which had got a good grip of my system, I now have to eat plenty of protien as my levels are very low, i also had 2 units of blood as w,cell count was down, but now I am on specific antibiotics that will hopefully get it under control, I have more tests next week to see if they can continue my chemo! Basically they said I have had every side effect going but the chemo has worked wonders for the c.l.l. !!! Anyway will keep you informed on progress.
hope everyone is well and welcome Lia. Mandy j



Replied On: Oct 06, 2008 10:22pm
Eileen

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Hi Mandy
Sorry to hear you have been so ill. I hope you are feeling a little better now. I hope all goes well and at some point you can carry on with the chemo if necessary.
I can understand exactly how you feel I have been neutropenic on and off for the last two months. Just found out the neuts have dropped to 0.5 again. I have been allowed to stay at home but in isolation. So I really hope you feel better. I found the high temperatures hard to take.
You take care of yourself and I hope it improves soon.
Eileen.



Replied On: Feb 17, 2009 09:22pm
mandy j

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Hi Everyone,I have had 4 rounds of chemo and retuximab, should of had 5th 3 weeks ago but my platelet count has kept dropping last week it was at 11 and I had what they called a platelet rash! Also had a bit of a nose bleed but it stopped pretty quick, I saw my consultant and he reccomended a platelet infusion which I had on friday blood test monday results today is platelets have only gone up 1! I see my consultant again next week he said he may have to look at stopping chemo! I am now just waiting to see what happens it does worry me as the cll is still slightly in my spleen and stopping now wiould probably not give me such a good remmission.
My it is a very testing time and I have felt quite down since this news, makes you wonder what is going to happen but again I have all the questions ready for the consultant anybody got any views. Mandy j



Replied On: Feb 20, 2009 12:47pm
Admin

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Posted on behalf of member Valerie.

Am thinking of you, during this difficult time. Remember we are all behind you in support .



Replied On: Feb 21, 2009 04:14pm
Greengrass

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Hello Mandy j.
Sorry to read of your problems. It seems a complex treatment but at least it shows that your consultant knows what he is doing.It must be very stressful. Best wishes for a successful outcome.



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