CLL Support Association
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Life after FCR.

After 3 years W&W I've just been told that I'll need treatment in the next year or so. (So far I have had no symptoms other than lymph node swellings and a rising blood count - no fatigue or night sweats) I know that everyone's experience with FCR is different but one thing that seems clear is that after FCR the immune system is less strong certainly for the short term and often for the long term. My wife is understandably very worried. She fears that after my treatment I'll not be able to hold down my job due to the weakness in my immune system and that our inability to keep up with the mortgage payments will lead to us losing our home. She is panicky and I'm just wondering if any of you could share your experiences of life after FCR - good and bad - so that we can get a balanced view of the future. My attitude is to live life now for all it's worth and not try to make predictions, but at this moment we're both feeling the pressure.

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Hi Kram,

What a worrying situation for you to be in, I can understand your concern. I'm on W & W (diagnosed 15 months ago) so I'm going to leave it to others who are post FCR treatment to give advice on this.

My main advice would be to make sure your get a second opinion before starting treatment especially if you're not presently under the care of a CLL specialist. The timing is crucial and needs expert advice.

Hope all goes well and remember Macmillan are able to assist with financial planning and issues if the need arises.

Newdawn

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For those of us who don't know. What is Macmillan?

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Ah sorry Extreme, it's too easy to forget that Macmillan Cancer Care is a UK organisation. It's very prominent here in terms of services, support, advice and nursing/palliative care and a very valued organisation in terms of raising the profile of cancer sufferers and their families. Here's a link explaining;

m.macmillan.org.uk/home

Regards,

Newdawn

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Hi Kram,

I'm happy to share my experiences, at two levels. First here, second if you have more specific questions I'm prepared to talk (email or IM or if you are going to Oxford over a coffee).

So, my story in brief. Diagnosed June 2012, started FCR July 2012, no W&W for me :-(

In run up to diagnosis: finding myself tired alot, sleeping in evenings in front of TV, snoring heavily (neck swollen at end - hence going to GP originally).

Lucky enough to have employer who let me have the time off for my Chemo, however, that I found was a two edged sword, I sat around doing nowt for quite a lot of time. I believe I could have worked at least two weeks in every four, possibly three. I do a lot of driving and meeting lots of people so my comment above is tempered by that, if I'd been in a desk job I reckon I could have worked most of time. But the first two cycles are critical, in as far as I was told they set the scene for all the cycles (in most people).

Ten days into cycle one my neck back to normal (I think that's the Retuximab mainly - from memory) and no more snoring - to the relief of my wife!

I went back to work full time after my first checkup (cycle 6 + 3 months), but again that was because of my work profile and agreement with my company they did not want me to start back until we found out the results of the tests.

So now? I feel fine, no snoring, no sleeping all evening in front of TV (see middle of films as well as start and end).

I've given up work, because I've chosen to, I did about six months and decided I wanted to do some thing different, so now planning a future. This was choice I could still be there if I chose and I would be working full time.

Physically, I am possibly a bit weaker, but I've always been weedy. However, two weeks ago I did 6.5 miles (all ups and downs in Peak District), that was tiring and the longest I'd done since before treatment.

(No Laughing:) For the last 30 years I've been a Morris dancer, during my chemo I skipped lots with all sorts of reasons (to cover up my CLL). Had a great season of dancing during summer 2013 and enjoyed every minute. That's part of my keeping fit.

My advice: think things through carefully, make plans ask if in doubt and above all dont panic, panic will make matters worse not better (easy to say I know).

I wish you well with your treatment. Let me know if you need more info.

rob

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Kram that must be so scary and something many CLLers will face and many definately have faced. Hope rob's post has helped you feel not so alone, and more positive. Sure many will be adding their experiences to give you a fuller picture of what to expect..

Best wishes

Bub

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The German CLL Study Group FCR CLL8 trial is the watershed Phase III Trial. If you are considering this treatment it may be of interest to read the trial results...the abstract can be found here and the paper was published in The Lancet.

ncbi.nlm.nih.gov/pubmed/208...

Paywall

tinyurl.com/jvzul7q

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Hi - I am Martyn and I have been diagnosed with CLL since 2001. To some extent, because I have had good remissions, my CLL has been at the back of my mind

Treatment History

Chlorambucil in 2001 & 2003

Relapsed for several years until further treatment FCR in July 2010 – 6 No. FC Chemotherapy with 3 No. Rituximab – completion Jan 2011.

I found that I could just take a day out from work to receive my treatment in the Day Care Unit - and then drive home and go to work the next day. ( What did help was arranging the latter treatments on a Friday - to give me the weekend to rest!)

Knowing my immune levels would be low - I came to an arrangement with my work colleagues / boss that if THEY were coming to the office with even a hint of a cold or cough - they would tell me and I could work from home!

So in my experience, with help from family, friends & colleagues - FCR treatment is manageable.

Finally, as others have mentioned, either a second opinion OR question your Consultant at length - because other chemotherapy treatments maybe available to you. Currently I am on a Clinical Trial (see other posts.) which usually entail a proven Chemo Treatment with a new drug / placebo. But importantly they offer more frequent blood tests and monitoring - which gives you a bit more reassurance.

Whilst financial matters are important - your health must be the priority - you will be surprised how helpful banks, building societies, etc are when they know the situation!

Do not hesitate to ask me anything further!

Marty

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Hi,

I had FC and a bit of R 3 years ago. (I reacted to the Rituximab and so it was stopped part way through the first course.) Prior to treatment I had sleep apnoea (where you stop breathing for 40 - 50 seconds every couple of minutes while you are asleep), eyes that were severely bloodshot and hard to focus, chronic tiredness and during the day I couldn't breath through my nose. I had been told that these symptoms were nothing to do with CLL. After my first dose of chemo - my eyes cleared up, my sleep apnoea improved so that I didn't have to use a air pump to breathe at night, my nose became clear during the day and my tiredness left me. I had 1 day off from work every course of treatment to go to the hospital and a couple of other days off over the whole course when I was just feeling poorly. However, it was brilliant and improved my life incredibly.

I am a specialist teacher in a school (i.e. I teach children 1 to 1) and come in contact with a lot of children. I am required to be patient and very encouraging and I was definitely well enough to do my job without any difficulty and my immune system was strong enough to ensure that I didn't catch any of the myriad infections that kids carry.

I took all the pills very carefully and the treatment worked like magic. However, be warned! I took septrin, an antibiotic, as a prophylactic. At the end of my chemo I had a reaction to the antibiotic and my skin blistered and itched appallingly. The symptoms didn't subside for 2 years! If you are given any antibiotics then do check their possible side effects and stop them at the first sign of an adverse reaction.

I am about to start my second round of chemo and this time I haven't had any of the original symptoms. Now I have low blood pressure, a swollen abdomen, breathlessness and palpitations and I am hopeful that these symptoms will go just as magically as my symptoms disappeared after the first round of treatment. (This time round I'm having Bendamustine - a form of mustard gas!)

Good luck. CLL and its treatment seems to be different for everyone and when the disease recurs it seems to present itself differently. However, the consensus seems to be that FCR is very effective and not that hard to tolerate. (I am 6 feet, 15 stone and bearded but despite appearances I am a sensitive flower and quite literally faint at the sight of blood and take to my bed with a headache! I grumble and complain at any discomfort but truthfully most colleagues didn't know I was on chemo and they had no suspicion that there was anything wrong with me!)

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I am 43 and have been diagnosed with CLL about a month and already started FCR treatment. What strikes me is that I too experienced very weird snoring symptoms for about 8 months and was waking up in the morning with a month so dry I could barely close it. I never thought it could be linked to CLL. Besides that I had some enlarged lymph nodes around my neck and I also noticed that my tonsils got a bit bigger...I also had 80% bone marrow penetration (not entire sure what it really means)

Took the first round of FCR, had a little bit of allergic reaction to Rituximab (shivers, cough) which the nurse handled with antihistamine but no other side effects at all. The snoring stopped within a week and the lymph nodes have decreased in size but they are still palpable which worries me that the FCR treatment is not going to work well....

I am going for my second round in a few days...I do hope that the fact that lymph nodes have not completely disappeared is nothing to worry about and that they will continue to get smaller..

What do you think?

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Like you, I was 3 years in watch & wait mode, and recently, when anemia, fatigue and swollen nodes and spleen announced themselves, it was clear that treatment was in order. Honestly, while the panic is easy to yield to, let me encourage you to focus first on life WITH FCR before you project outward toward life AFTER it. I am in FCR treatment myself just now, and while (as everyone says, correctly) each person has different reactions and capacities, a really good CLL specialist, fine-tuning the dosages and coping with your blood-test responses, can go a long way toward keeping you "normal" during treatment, without the debility that so many of us grew up associating with the word "chemo." Yes, there will be days of being tired at odd times, and extra attention must certainly be paid to infection-prevention...but don't let the fears of a wrecked life get to you; there's no reason it has to be that way.

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I had FCR 5x from march to july 2012.

For me the chemo was a walk in the park compared to the time after treatment. Had a week off from work during chemo, but did work 3 weeks after.

The time after treatment is hard, bad immunesystem constant infections IV antibiotica etc.

Now the season has started for me this winter, first IV antibiotica in hospital last week. Has forced me to rethink my worklife (stressfull job as a purchasing manager and mother of two small children)

Sorry to be the party killer - but I would wait as long as possible before treatment.

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I have to agree that my experience of chemo is also as a party killer. I've had 1 of 6 FCR so far and the idea that I could keep on working through seems very far from reality for me personally. I felt extremely weak and couldn't even get to the other side of the bedroom - people really do react so differently. So far the FCR has done it's job though and my high white cell count has gone right down after only one round.

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Damms - Have you had your Ig levels tested? If your IgG is very low it could be that IVIG infusions would be helpful. I had never ending infections and IVIG has completely changed my life for the better.

Pat

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Hi Pat,

Yes after my post my Ig levels where tested and I have startes with subQ Ig at home.

It has really improved my quality of life.

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