Chlorambucil: Hi All, Any one having some feed... - CLL Support

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Chlorambucil

AAli profile image
AAli
7 Replies

Hi All,

Any one having some feed back on this medicine? Is it better option than FCR?

Regards

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AAli
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AussieNeil profile image
AussieNeilAdministrator

Chlorambucil is a rather old CLL treatment that FCR easily surpasses. A quick look at the plots 'Changing the Definition of Complete Remission' which compares the depth of remission you get from Chlorambucil, Fludarabine (the F in FCR) and FCR will tell you all you need to know about Chlorambucil:

updates.clltopics.org/2515-...

The rest of the article will give you a good introduction as to why FCR became the gold standard for immunochemotherapy treatment of CLL five years ago. It still is the gold standard for immunochemotherapy treatment. There are what appear to be better and certainly less toxic non-chemo treatments available, but they aren't readily available in your country or mine. It will be a few years yet before we gather enough data to generate further plots for the new treatments...

Neil

Cammie profile image
Cammie

I had chlorambicil in 2005 as it was the front line treatment then.

I only had one weeks treatment as developed a rash and and had high temp.

Did have MRD status for 9 years after until the cll got to a stage of needing treatment.

My WBC went from 130 to 18 after just the weeks treatment but,of course, didn't have enough to get complete remission as docs worried about the allergic reaction.

As Neil says FCR is the gold standard throughout the world at the moment.

Ali, you seem to be very worried about your diagnosis and have sought second opinion plus asking for info on here. Your status was such that you should not be worrying too much at the moment as discussed before.

Please do ask any questions you may have via the site but please don't worry as you are in the initial stages and should be enjoying life.

It is very difficult to get your head round things when first diagnosed and you are doing the right thing by learning as much as you can so you can speak to your doctors from a position of strength. I do hope you come to terms with your diagnosis and wish you well in the future.

Geoff

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Hi Ali

I have been following your posts Are you diagnosed as stage A and are asymptomatic? if so then it would be very unusual for your doctor to be considering treatment at this moment Watch and wait is hard to get your head around and worrying is very normal, there are more of us here in the group on watch and wait than treated who can share .

Chronic leukaemias like CLL are slow developing so tend not to require treatment for some time.

Here are some reliable learning resources:

Welcome to the family: cllsupport.org.uk/welcome-f...

Have you visted our website, start here Start Here - Chronic Lymphocytic Leukaemia: cllsupport.org.uk/cll-sll/s...

You can also access a good CLL booklet here: leukaemialymphomaresearch.o...

There is a watch and wait section on our website here: cllsupport.org.uk/cll-sll/s... with some video and a great booklet you can download

When/if treatment is required in the future there are guidelines.

When/if treatment may be needed you may be talking about different treatments then :-)

A persons general health, fitness, and age will be an important factor in the determination of what treatments are recommended when it is required. Of course what is available to you in your country is also a factor,

Chlorambucil as a single agent is not normally used first line as a single agent to treat CLL As others have said FCR is still the gold standard for the fitter population at first treatment.

Today Chlorambucil is normally used first line in combination with a monoclonal antibody such a rituximab or one of the newer improved versions ofatummumab or Obinutuzimab to treat those who cannot tolerate a stronger more effective treatment

This overview video/webcast talk from CLL expert Dr George Follows may be helpful cllsupport.org.uk/cll-overview

Nick

AAli profile image
AAli in reply to HAIRBEAR_UK

Thanks Nick

You are absolutely right I am more panic:) Reason is that here in our country still I am unable to find any CLL expert. There are hematologist or oncologist but unfortunately no one is there who we may call a CLL expert.

Then among available there is lot of opinion/approach difference that is confusing me. Should I wait or go for chemo?

Some saying it is 0 stage or A but other think it is advance?

Majority suggesting FCR but 02 suggested Chlorambucil as FCR is too toxic and they claim that chlorambucil will give same result and survival with better quality of life. Similarly 2 oncologist pushing for BMT.

The most experience oncologist, having 40 years of professional experience, asked to go home and relax and he claimed that he does not foresee any treatment needed for so many coming years.

Hope you understand my issue is that difference of approach is my my main concern

Best wishes.

AussieNeil profile image
AussieNeilAdministrator in reply to AAli

AAli, if you needed something of yours that was very complex mended, would you trust a general repairer to repair it or an expert with decades of experience? Your body is far more complex than anything else you have. You have already been provided references to information from world experts on CLL in answer to your questions here, that should highlight to you that some of the answers from those you have consulted do not appear to be sound advice for someone in the early stages of CLL. A BMT is a high risk treatment and generally only used on young CLL patients with aggressive CLL where treatment is unlikely to provide a long remission. Likewise Chlorambucil is not often used nowadays because there are much better treatments now available, like FCR or even BR if you are older than 75, when FCR is harder to take .

Trust that most experienced oncologist's advice and go home and relax. There's a good chance you may never need treatment. Even if you eventually do need treatment, by then, there may be a new treatment that makes FCR look as poor a choice as FCR now makes Chlorambucil look. Even if you are at the most advanced stage of CLL, if you are feeling well and haematologists or oncologists have not found anything that is of immediate danger to your life, then the best thing that you can do is just live your life as normal. Broadly, the only changes you should consider are looking after your health by improving your diet and fitness and getting your non-live vaccinations up to date. PaulaS has collated an excellent summary of what you can do, starting with this pinned post: healthunlocked.com/cllsuppo...

Neil

manzelka profile image
manzelka

I wouldn't know if it wS a better option, my husband had chlorambucil on and off. For a few years before his haematologist decided he needed FCR.

He had no side effects from the pills.

PaulaS profile image
PaulaSVolunteer

I believe research has shown that although Chlorambucil did improve blood counts, and made people feel a bit better, it gave NO improvement on overall survival rates for CLL. It was only when FCR was started, that people showed longer survival rates.

Sorry I don't have a link to that research... maybe someone else has...

Chlorambucil in combination with other agents is another matter though.

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