After treatment of CLL through FCR and getting into remission hopefully, how will the life of the CLL patient be, I mean do I have to do regular tests yearly or every 3 months to check if CLL is gone or came back, can anyone shed the light on this issue please, thanks.
Firas
This is also a question hubby and myself have been thinking about. He has combination of Gazyvaro and chlorambucil. Answers would be interesting. Just wish his WBC count would go into normal range instead of passing it above or below. Last time he hit normal was back in February this year.
Susiecarer
I’m in remission after FCR finished in Feb 18 , now back in WW still have 3 monthly appointments for now but hopefully if numbers stay stable will return to 4/6 monthly, Good Luck and here’s to a long remission 🍾
Thanks dear
When I finished in March 2017, I first sent every two months for several months and then every three months. Now, it's every four months. I hope you have a very long remission from this.
Thanks dear
This is a GREAT question and one I am interested in seeing the answers too. I hope most of the replies involve things like puppies, kittens and unicorns.
Scott
Thinking we definitely need more puppies, kittens and unicorns
that would be good, I have a little grand-daughter who very much believes in unicorns to heal all. My remission is holding, but the dreaded appointment is in a couple of weeks. Good luck to all.
This is very patient-specific and treatment-specific.. and depends on the depth of remission, the aggressiveness of your CLL, how we'll you responded to treatment and so on.
Some treatments you now stay on for year's, others are cycled usually over 6 months...
Most treated CLL patients will be monitored often for years and the interval is up to your CLL specialist. Patients with more aggressive markers will be monitored more closely.
Treatment is a bit like hitting the rewind button..on the old cassette player...
~chris
There is nothing wrong with an old cassette player...the damn expensive stereo I installed for Renee in her car 2 summers ago frequently forgets to connect the blooooootooooooth to my phone and so....stuck listening to regular FM radio. I wish I had a bunch of old cassettes....and of course, and old cassette player to play them in.
Scott
Driving without music sucks almost as much as Leukemia and just like it....I can only treat it...not seem to find a cure
I completed 6 rounds (minus 2 days) FCR in October 2017. Whilst I'm still neutropenic, I am back at work at a nurse at our regional hospital, and feeling WONDERFUL! Admittedly it took just over 6 months post chemo to get to feeling so good, but I also have more energy than I did in the period before I commenced chemo.
I've seen my haematologist 3 monthly since, and after my next appointment, I believe I will go to annual checks with him, but 3 monthly checks, or as needed, with my GP.
Onwards and upwards. Here's to health and wellness for us all! Stay positive.
Best wishes,
Sue from NZ
PS Scott, I couldn't have gotten through this journey without my kittens, puppies and unicorns 
Sue -
What precautions do you take as a neutropenic nurse at a hospital, and what are your duties?
Are you on IVIG or SCIG?
=seymour=
Hi Seymour, I work in an acute medical unit, so anything and everything comes through the doors. I am a hands-on registered nurse, so I do whatever is required with respect to patient cares and interventions. I wear a mask if a patient has a possible contagious respiratory issue, and am continually hand washing!
I'm not on any meds, and my haematologist doesn't want me to be unless I start getting infections. I feel fabulous!
Hope all is going well for you
Hi,
I have un-mutated CLL and I'm now 5 years post FCR and still classed as in remission A few small nodes have started to reappear and I'm noticing slight changes in fatigue, but white count still within normal range, and my consultant is happy with how remission has been.
I am still on anti-virals and antibiotics as my immune system is a bit flaky but that's a one of those things and although my IGG count is low I seem to be lucky and miss infections - so far
I have been monitored well by my consultant since finishing FCR - either 6 monthly appointments or I'm now back on 3 monthly - as my platelet levels have dropped a bit - so they are keeping a closer check on that. It's just the same as being on watch and wait really.
I know that FCR isn't everyone's choice, but I went with the 'Gold standard' that was offered 5 years ago and personally I feel that it has worked well for me and I've had a great remission and fingers crossed it lasts a bit longer.
Good luck with treatment.
Louise
Thanks a lot dear wish you very long remission
Hi Nour80Leen2011,
As I was interested in this topic, I wrote a responses to similar posts. Each time I learned something new. Here is a summary of where I have arrived at, with apologies if you have read most of this before.
I was told I was in "remission" about six weeks ago. I should have felt elated but because of complicating factors I did not feel that there was a significant change. So I figured out that there are three phases.
1. Remission. I took this to mean that my blood values were in normal range and that there were no signs of CLL in the peripheral body (the blood?) or various sites (bone marrow, spleen, lymph nodes, etc.).
My first mistake was to assume that as I was "in remission" that I was now healthy and able to resume normal life. But being "in remission" seems to mean that the CLL has been stopped in its tracks and the white blood cells are no longer proliferating. After remission I found it more accurate to say that I am in....
2. Recovery. I have been in treatment for 18 months and my body, like everybody else with CLL, has been battered with drugs, which although more specific and less damaging than the early chemo, which the liver, kidneys, heart, digestive system, etc., have had to process. With remission begins the body's recovery of strength, gains in energy and glimpses of a "normal life". From other responses from CLL Unlocked members I gathered that this process of recovery lasts between a minimum of six months to two or more years. In Germany, a four week residential rehab is offered to help get people back on their feet and to regain their quality of life. Sorry if this makes you envious.
CLLers in remission and recovery face a third problem.....
3. Complications. CLL is more or less incurable. It is likely that it will return sooner or later. For this reason I assume that I will need check-ups and blood tests twice a year to confirm all is still well. Also there is the question of whether medication should be reduced or stopped once in remission. Yesterday CllCanada posted a summary of report which showed that in 25% of CLLers who discontinued Ibrutinib for various reasons, the disease returned. Even in remission the way forward can be complicated and may consist of short or extended periods.
Looking back over my treatment I can see more clearly how ill I became. Because the deterioration was slow, steady and accumulative I didn't recognise how low I had sunk until now I am on the up. On the other side the treatment was much less dramatic than my initial fears. I had no pain, I didn't lose my hair and I had lots of time to reflect on my life. The treatment has prolonged my life, and I have a deeper appreciation of it. One kind correspondent told me how his treatment had allowed him to live to see the arrival of his grandson. There are many blessings on the way and to come....
CLL brings highs and lows and I hope that in your remission, you have the highs of health and happiness.
Best wishes,
Peter
Thanks a lot dear for your valuable words and wish you the best
So true. X
I am unmutated CD38 neg and Trisomie 12. Got FCR 10/13 up to 4/14. MRD neg.
Till today, all counts etc. are in best shape. Normal life, no exceptions. Regularly sport and walking in fresh air.
I deliberately have my counts monitored now every 6 month. Since 3 years, there are few detectable C LL cells , between 0,1 - 0,6%, it various, but it seems stable.
Will see, how long it works, hopefully for ever.
Wonderful posts! Just in time for me to start my FCR next week. Port went in with no problems today. Of course I am concerned about all the things that can happen, but fortunately my doc is admitting me to hospital for 3 days for my first round.
After diagnosted with CLL I lost 
venetoclax and obinutuzumab treatment for cll
atypical CLL treatment 
CLL; when is treatment?
