Diagnosed Dec 2013 I have been told I need to start FCR treatment; based on blood results and mild night sweats. Otherwise I feel fine.

[romarin]

I would like to know if I ask to postpone treatment whether I am taking a risk. I am told early treatment is good if they can catch active cancer cells.... but during and after treatment my immunity will be further compromised. Surely it is better wait till I feel ill, or symptoms combine to make it necessary? My night sweats now stopped since I stopped drinking so much wine due to the stress of all this.!

[Newdawn Administrator]

Hi Romarin and welcome.

My first reaction to your question is to ask whether you have sought a second opinion or indeed if you are already being treated by a specialist in CLL (not a general oncologist or haematologist without specialist knowledge). Also which country are you from because protocols seem to be different?

Are you able to give us a clearer picture of your blood results? Are you aware of a doubling of your lymphocyte levels over a short space of time for instance? (Usually only relevant if they are over 30). I'd be concerned that you still have a feeling of wellness and seem to sense yourself that the time isn't right. Have scans revealed enlarged nodes impacting on vital organs? Do you have troublesome bulky nodes externally? What reasons are being given for starting FCR now apart from the curious explanation of 'catching active cancer cells.'

Has a FISH test been done? There's many unanswered questions that you seem to need answers to before agreeing to treatment at this time because as you say, there are significant implications. It would be helpful if you could give additional info to assist people in their advice. Ultimately it's between yourself and your doctors but I don't blame you in seeking advice on this.

This article from Dr. Sharman, 'When to treat CLL' may help you.

cll-nhl.com/2012/12/when-to...

I'm sure others will be along to advise you as this is a big decision and I'm not surprised you're stressed as no convincing reasons seem to have been given to you apart from the night sweats which seem to have eased now. Good luck.

Newdawn

[romarin]

Thanks so much for quick replies. I don't know the blood details but will be given another test in a weeks time. Other symptoms are small enlarged lymph nodes in my neck, which I consulted my DR about and thus was referred to the UCH Macmillan Centre and diagnosed.

I am glad that you think I am right in needing more information before starting treatment. I will post again once I have the next result.

But it has been stressed to me that FCR works best if administered when the cells are active. What is a FISH test?

I have had scan and bone marrow aspirate. During my last visit unfortunately the DR had to wait for blood results, She first told me I did not need treatment based on bone marrow and scan results. Hooray we said. But then when she got the bloods she said oh dear may need to start treatment in 2 weeks. (based on the blood result combined with the sweats) Thus great distress at such confusion. Sorry I am writing all this the wrong way round. Forgive me. So pleased to find such support here.

[Cllcanada Top Poster CURE Hero]

I would request a second opinion with perhaps Amit Nathwani at UCLH, he has been suggested as a CLL specialist by other patients.

See link below

iris.ucl.ac.uk/iris/browse/...

CLL cells are always active, unfortunately, your doctor's comment makes little sense...

[Newdawn Administrator]

Romarin, I think the important issue here is you feeling fully confident in your specialist's advice to treat and to do that you need as much information as possible. Because it's such a pivotal decision, I think I'd be wanting a second opinion too because there appears to be some uncertainty at present.

Hopefully others who have been in this position will come on and offer their advice. Clearly your physicians must have compelling reasons to

suggest treatment but I feel you need to be a partner in that decision and to do that, they need to very carefully explain why treatment has become necessary. This explains simplistically what a FISH test is;

'Fluorescence in situ hybridization (FISH), "maps" the genetic material in human cells, including specific genes or portions of genes.

Because a FISH test can detect genetic abnormalities associated with cancer, it's useful for diagnosing some types of the disease. In some cases when the type of cancer has previously been diagnosed, a FISH test also can provide additional information to help predict a patient's outcome and whether he or she is likely to respond to chemotherapy drugs.'

Essentially it's a blood test that can provide an individual genetic profile of your disease and assist doctors in predicting treatment options and response to chemo. It's not routinely carried out but I'd certainly be wanting a FISH test prior to FCR.

From what you've said Romarin, you're not entirely sure which blood tests have been undertaken which is fuelling your dilemma. I think you need to sit down with your specialist and request much clearer information. Whilst fellow CLL'ers on here can never replace the advice of your doctors, I'm sure you'll get advice on how to get the best information out of your doctors in order to make your important decision. ChrisCanada above has given you a good contact to help you with this and I agree that the 'active cells' explanation makes little sense without further explanation.

Don't be afraid to request a second opinion. Your well being is more important than anyone's ego.

Best wishes,

Newdawn

[bkoffman CLL CURE Hero]

Not sure why you need treatment now. Not hearing any of the iwCLL criteria being met if the night sweats are gone. Honestly, the talk of having therapy when the CLL cells are active seems way off base to me. Get a second opinion and get a FISH before treatment.

[Quarry]

Once you have your blood results, you will be in better position to challenge, but this does sound odd. My understanding of CLL-based night sweats are that they are very wet....not mild. Also, I have been told by my haematologist (and there is lots of evidence) that early treatment does not help.

I had 'mild' night sweats due to AIHA (caused by very early non-treatment-needed CLL), which did need treatment. Signs of AIHA are reducing HB and high reticulates (baby red blood cells) and a swollen spleen.

[grizzlebear]

I was diagnosed in dec and im already on FCR. I was shocked as i was initially told i would be watch and wait for sometime. We even booked our holiday which we then had to cancel. I had some fatigue in the evenings and like you if i drank i had bad sweats and would feel flushed. The decision was made due to my WBC and very low immune system. Although i have enlarged nodes in my neck and chest they are not too bad.

Im 45 and my Onc has taken the view to start now BEFORE i get poorly or i get an infection or even worse a viral infection that would stop any future stem cell treatment.

There is so much research going on at the moment i think its wreckless to postpone treatment and risk getting ill or letting the cancer kill your immune system totally. I have a very good team ant the theory is that if you need treatment due to your blood counts or your LDH levels are high then your body is being damaged. Stop the damage as soon as possible and hope the system recovers. It will take your immune system 2 years to get over this, by that time all the stem cell research will give you great hope of being cured.

Wait until you get poorly and you may never be well enough for the new treatments. If your LHD is high and you have few or zero viable "t" cells then its a no-brainer. If you bath leaked would you wait until the kitchen ceiling fell in?

FCR is not that bad to tolerate, the week you have the treatment is pretty pooh and you just want sleep. After that week you soon bounce back.

[romarin in reply to grizzlebear]

Thanks for your reply. It is interesting to have a different response-since all the rest advise against starting FCR until really necessary- which is when? When I feel bad?

I am 60 so I wonder whether hanging on for stem cell treatment is realistic....are you saying that having any virus precludes stem cell anyway - I presume this includes flu? I obviously need to get more details of my results anyway. And am on a steep learning curve. But many many thanks folks!

[splashsplash]

People's reaction to FCR seems to be very varied. It completely floored me, I couldn't even crawl across the room I was so weak and sick and I caught an infection that landed me in hospital for two weeks. At the other end of the spectrum, a teacher at one of the CLL conferences said that during his six months of FCR he'd not had to have a day off work.

One thing's for sure, FCR is a very toxic regime and unless you really have no other options W&W has got to be a better alternative.

[jangreen]

Hi the best advice is to get a second opinion with a CLL expert ( don't be afraid to ask - most of us here have). Please try to read up on this site so that when you do see your Dr you know what questions to ask. This site is easy to get around and has a wealth of information. Normally with CLL you have a period of Watch and Wait ( W & W) so that you can adjust to diagnoisis (DX) and educate yourself. Good luck.

[HAIRBEAR_UK Founder Admin]

I had a look to understand where your comment: "But it has been stressed to me that FCR works best if administered when the cells are active" may have come from?

Perhaps it was explained as active disease and your blood results will shed some light as to how active your disease is? Or that chemotherapy works by targeting cells that are most actively dividing? I would press your doctor for an explanation.

From UK guidelines below: "The timing of treatment, especially in asymptomatic patients, depends in part upon the rate of disease progression." This is only part of the many factors a clinician will consider,

Lymphocyte doubling time (LDT) is one method used by clinicians measure the rate of progression.

The guidelines below highlight other factors that are also important considerations and taken into account with this.. Lymphocyte counts can increase rapidly for many reasons such as infection or other stimulus and one measurement may not be sufficient. CLL is normally measured over time to get a true picture of progression , your next blood counts will provide a clearer picture.

Treatment is a serious consideration and is not normally undertaken in CLL until there is sufficient reason. CLL can progress slowly over a long period of time(many years) before treatment is necessary. Equally it can be more progressive and if tests indicate high risk CLL or there are physical concerns then treatment may be suggested very early on.

make sure you are under a haematologist with a special interest in CLL and seek a second opinion if you are unsure of what you are being told.

It is important that your clinician explains everything in depth for you in a way you can understand the need and the challenges of treatment and you are confident in why they are making recommendations. Developing a good relationship with your clinician to enable you to share in decisions being made is important. You can help by learning about CLL and it;s peculiarities as well as the doctor understanding your needs and perspectives. The UK CLL Forum provide guidelines for clinicians for this purpose: Communicating with patients - 2012 guidelines ukcllforum.org/downloads/85... There are several London based CLL Forum members who are consultant haematologists with a special interest in CLL.(CLL experts) let us know if you require further assistance with a few names.

UK Guidelines on the diagnosis, investigation and management of chronic lymphocytic leukaemia onlinelibrary.wiley.com/doi...

[romarin]

Thank you for this. I am now at UCH Macmillan Centre. My consultant is Professor Nathwani. I have not seen him yet. When we have results next week I will discuss options, and ask for a second opinion if treatment is recommended immediately. If any other CLL specialists can be recommended that would be really helpful.

[Cllcanada Top Poster CURE Hero in reply to romarin]

Here is a list of CLL doctors suggested by other patients... no way comprehensive or complete. You may find it useful... acor-cll-help.wikispaces.co...

[HAIRBEAR_UK Founder Admin in reply to romarin]

Prof Nathwani is involved in some interesting research involving CLL. good luck with your appointment with him and your results. keep us posted on your progress.

To follow on from CLLCanada's post - A UK list originally provided by CLLSA is no longer available it was far from complete it is now under review.

This is from Cancer Research UK CLL section which provides information that may help patients with understanding CLL and gaining referrals Should I see a chronic lymphocytic leukaemia (CLL) specialist? cancerresearchuk.org/cancer...

Here are just a few more London Hospital haemato-oncology teams headed by leading figures in the field of CLL medicine that may be useful.

Royal Marsden - Dr Claire Dearden royalmarsden.nhs.uk/consult...? royalmarsden.nhs.uk/consult...

Bart's - Prof John Gribben bci.qmul.ac.uk/staff/item/j...

Kings- Prof Stephen Devereux kch.nhs.uk/service/a-z/haem...

[holly2]

Hello Romarin, so sorry you have had to join our exclusive club! I was diagnosed in June 2007 and am in a watch and wait situation. I always ask to have my annual blood test results and keep a meticulous record of them so I can monitor for myself the rate of change. From the research I have undertaken, all the time I am under a W&W situation I am happy! But I understand there is a point when treatment is sensible. I am also 60 like you and intend to try and enjoy every day as it comes! I am glad others have also said they get night sweats from drinking wine! I thought it was just me! If I am going to treat myself to a glass, then I just have a drop at lunch time (so long as I am not driving anywhere of course), and that seems to be OK - no night sweats. I hope you get some more information from your consultant soon. These first few months after diagnosis are really horrid and worrying. Best wishes and keep your spirits up!

[romarin in reply to holly2]

Thank-you so much Holly. 8 or 9 years of W&W sounds a dream...yes we are an exclusive club. Do you have any other symptoms? I get a bit tired but hey I am 60 - and these two little nodes in my neck. But that's it really. Well OK too many colds...

[holly2 in reply to romarin]

Hello again, I do feel quite unwell sometimes when I get hot, e.g. when the weather is hot, in a hot crowded room, etc. can't explain what it is like but I know it is due to my overheating! I also get tired but, like you, may be I don't get any more tired than any other 60 year old! I am still pretty active. I also have two little nodes in my neck, one right under my right ear, under the jaw and about 20 cms. The other further down in the neck. I also have enlarged nodes that I cannot feel but am told are there from scans I had some years ago. I do pick up colds and take as much precaution as I can to avoid crowded places. I even have my groceries delivered during the winter months to avoid going around busy supermarkets (that is my excuse anyway!). On the whole, I cannot complain about life just hope it continues without the need for treatment!

[grizzlebear]

Just to add in defence of early treatment. I have started FCR early due to a high number of WBC(44) which were all cancerous. I had no viable "b" cells. I was diagnosed Dec and started in Feb

Im 45 which is early to start, Although i had sweats i was otherwise healthy other than a massive submalinder lymph which made me look like frankenstein!

After 1 round of FCR my gland is 60% better and my WBC is 3.3.My immune system has made "b" cells and my other counts are within a normal range.

Its early days and killing the cancer in the bone marrow is a different challenge but im so glad i never waited.

Im young and healthy enough to bounce back from this. Were already talking about life after this after round 1.

Why sit on watch and worry?

[HAIRBEAR_UK Founder Admin in reply to grizzlebear]

Hi grizzlebear, i am sorry to read you required treatment so soon after diagnosis. Can you let us know where you are treated?

Great to read you have gained such a good response to your first round of FCR, this must be very uplifting.wishing you continued progress and MRD

When it's time to treat, it;s time to treat. that's why being under a consultant with a special interest in CLL is so important. there are so many variables , how many times have we heard treating CLL called an art? In that respect timing is important because it is possible to go past the optimum time and reduce your capacity to benifit fully from treatment I agree.

Watch and wait is a dilemma for us in many ways, I remember when recently diagnosed how I wanted it out and couldn't believe that I had to wait. Believe me when diagnosed, I did not take it well and argued with the experts that I needed treating

Time has enabled me to understand why we have to wait . It is a double edged sword and not easy to get your head around. On the other side of the coin there are those who present requiring treatment early on either due to disease progression, CLL type or physical concerns at or near diagnosis.

It was explained to me that we don't want to wake a sleeping tiger until we have too., Treatment is what it is at the moment and is not something to undertake lightly. In my own case my own CLL seems to have settled down after four years of watch and wait, the identification and management of other conditions seems to have helped this. So treatment was not the correct path for me at that time.

Part of the problem of CLL is knowing in who the disease is likely to progress and cause complications. At the moment technology has not advanced as far as it needs to to provide this information fully and modern drugs have not been trialed in patients at the beginning of the disease pathway. Therefor have not been proven to show advantages, Until then licences or regulatory approval will not be given.

I believe there are clinical trials commencing in Germany to find out?

In the meantime watch and wait is here for some time in the UK.

Nick

[grizzlebear in reply to HAIRBEAR_UK]

Im in Leicester under Prof Dyer so im in good hands. The decision was based on the fact my WBC was just going up and up. Ive had my swollen glands for sometime. Although i was only diagnosed in december its thought i have had CLL for sometime. I had been seeing my doc for my glands since 2009.