I don't know about you all, but as I head towards an appointment with the hospital, I become quite nervous and anxious. So last week I was manic in my lead up to my 9 monthly check up.. my house was tidy as I was up at 6 every morning unable to sleep...
The day of the appointment arrived and 11.50 seemed to take ages to arrive. I'm a calm person generally but I can honestly say I had to do some deep breathing as I entered the unit on which I had spent so much time having my FCR as well as weekly bloods between chemo rounds.
Bloods were taken with everyone saying how well I looked and then into see my consultant. He was chirpy and happy .. and even funny at points.. said I looked well and on full examination could " feel no palpable nodes" . Bloods were good .. Really good to me .. and any little moans I had, he told me to basically man up and stop over thinking but enjoy life! He used the words remission .. and complete. ..We all know what this means .. no guarantees .. but I felt so oooo grateful for FCR!
Booked a holiday for September and feel well.
Keep going everyone .. We can live well with CLL
Written by
Bethan49
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I am so happy for you, My Husband has CLL and I fell just like you do when he gps for check up and blood work. he was told he is at his baseline and the DR. was happy , but still on his med .I am so very happy you are able to take a vacation in SEP. Keep us posted
Such brilliant news Bethan, I could feel the emotions from your description! Excellent levels and time to let out all the anxious sighs and knotted feelings...life begins again in earnest. However, if you ever run out of things to clean in the run up to these appointments, just pop over to my place with your duster!
Bethan, great news and such a relief to be able to, now, maybe be able to sleep a full night and into the morning--the house may become a mess! Who cares?
Also, blood pressure, tension should now be eased. Best wishes and bon voyage in September.
Those are very good numbers! I finished my six months of FCR in late March, had a CT scan in April which showed no enlarged lymph nodes. I had a follow up in early June which showed continuing normal red cell counts, slightly lower but fine platelet counts, and neutrophils around 2.7. When I went last week, the reds and the platelets were fine, but the neutrophils had dropped to 0.5. My nurse practitioner was not concerned as this can happen and I have not had any type of illness before, during, or after FCR. I was diagnosed as a result of severe anemia. I did some reading on late onset neutropenia and it appears to be not uncommon after rituximan treatment. What I found reassuring was that it's not related to bone marrow problems, not associated with severe infections, and seems to resolve relatively quickly. I know that you had a similar circumstance from one of your posts and it seemed to work out fine for you. Since beginning treatment last October, I have been on daily bactrim and acyclovir and that hasn't changed. I'm also, as ever, vigilant with hand washing and all of that.
Glad to hear you got your CT scan so promptly, I was told in February that I didn't require any more treatment (Rituximab/Methylprednisolone) and consultant requested a CT scan, which is being done next week, so have waited 6 months.
It sounds as if we have followed a similar pattern on our recovery. My neuts were 0.5 at easter .. They can zoom back up and this is the first time that mine have been over 2!
I think we'll always be vigilant ..You become do aware of everything .. door handles .. trollies. . Hand baskets ... !
Congratulations you must be on top of the world! The end of all those blood tests etc and anxious wait for results. Long may it reign and have a fantastic holiday!!
Aw thank you ..heading towards 2.5:years since finishing chemo now. Feel good...normal! No medication , back at work but taking care of myself..praying for continuing good health for you!
That's great news Bethan! It's time to celebrate life now. Enjoy that vacation.
My wife and I took a trip to Hawaii about six months after I had to stop FCR early due to complications. It was well worth it. We have to take advantage while we can...
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