I finished round 4 of my FCR infusions just 2 weeks ago so should be at my lowest blood point, but am having absolutely 000000 side effects. If anything, I am not as tired as I was after rounds 2 and 3. and the feelings of incessant coldness have gone away. Swollen lymph glands that I could feel under my arms and in my neck all but disappeared after round one. I understand I am having an easy time of it compared to some and I wonder how much of that has to do with my having SLL and not CLL?
So just 2 more rounds to go, and I hope they are doing something for me. I expected to feel sick and that has not happened. Fingers crossed that it continues that way and the scan they do after round 6 shows all of the lymph nodes have reacted as needed.
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Marie-54
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Don't want to worry you but I sailed through 4 rounds and my consultant decided blood was normal and debated with me whether to continue 2 final sessions as originally decided. Finally he made the decision to administer the last 2 rounds. Having experienced no side effects I was completely knocked over when I had the final two sessions. Three days of sickness, tiredness and aching body. But 2 years on it was worth it.
I to have ssl but was not as lucky as you I struggled from the beginning with terrible sickness. However like you my lumps disappeared quickly. I developed septis after round 3 and after round 4 my bloods didn’t recover so my chemo was stopped altogether to say I was relieved is an understatement. On a more positive note I’m getting on with things still need regular blood tests as bloods are still low. Still taking antibiotics and anti viral medication as nutropils still below 1. Here’s wishing the rest of your treatment goes as smoothly I’m sure it will good luck.
Well done. I was lucky too. But you still need to be careful now and for 6 months after treatment and then you will always need to listen to your body.
You say lymph nodes disappeared after cycle 1. This often is the most powerful cycle and the rest consolidate. I was in remission as such after cycle 2 and I was given a total of 5 cycles. But consultants vary in ideas about treatment length. My lymphocytes started at 265(000)!
Only 2 more months and then a time to celebrate but don’t over do it and take care.
SLL (me too) - if you're in the UK I guess you have no information on your genetics/FISH etc?
I may be faced with decision on treatment this year, and I am struggling with the idea of starting FCR without first checking genetic/FISH profile to see whether FCR is inappropriate.
1st World problems - I should be so lucky? I guess so.
Current swollen spleen and liver are relatively minor, but combined with fatigue still quite debilitating/restricting.
That’s fabulous! I wish I could say the same, I’m only 2 cycles in and it takes me a week to feel better. That’s okay though, numbers are all going in the right direction. I have 4 more to go! Glad it has been easy for you!
I am 54. I was stage iv - i did 4 rounds of FCR. I saw my platelets jump to 250, so i decided to stop. I am alive because i stopped i believe. i had swollen neck nodes that were gone after two weeks of rituxin. I noticed after the 4th round my appetite decreased, which was concerning. Oct 2015 i was diagnosed. It has been two years now, my bloods are perfect, and the fatigue is finally gone! when i think about it, they may have lied to me saying I had CLL - when it was probably an autiimmune reaction to some pesticides i was exposed to right before diagnosis.
I do not believe they would have lied to you about something as serious as CLL. I would take a good look at your test results. A diagnosis of CLL is not just a spur of the moment and one test type of thing. They would have done flow cytometry analysis at the least which would have shown the disease, not just a standard blood test. Have faith that the doctors did what they needed to do to get it under control.
I hope they misdiagnosed me, because I hear that CLL comes back after 3-5 years for some. I know alot about this. The monoclonial population - and actually low initial white counts were unusual for me, yet platelets were 30 and reds 1/2 of normal. The flow is subject to human interpretation, so I do not trust that test. i did have 91% bone marrow infiltration, but like i said - i was exposed to pesticides, and the doctor ignored me.
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