Good to hear from you both. Sorry to hear about further treatments.
It sounds like a rough ride Frank but so good you’re making progress to the dizzy heights of over 3 on your neutrophils. Smashing! How are you feeling, energy levels etc?
Mia, sorry to hear about your husband’s situation. It took a long while after the rituxamab and cladribine combo for me to bring my neutrophils back up. Every month a smidge ahead, sometimes back, but eventually I got there. I found rituximab very invasive in 2012. However so far it’s given me the longest remission so far, of 9 years. So it was worth it. I think there isn’t a guide to recovery time as everyone is different. I know a lack of certainty or projections of the future would be helpful. My advice is keep living in the moment and take very win you can, no matter how slow the recovery.
My bloods are okay. They have declined over the last couple of years but still okay. However I’ve still lots of side effects. I got avascular necrosis in left hip after the chemo in 2006 which led to a hip replacement and now the right hip is playing up with similar pains. I thought I got away with the other two rounds of chemo! I’m hoping it’s not the same thing as a second hip replacement isn’t really on my Xmas list!
Good news, so we’re getting a puppy in a couple of weeks. Seeking joy wherever I can find it.
First up, some good news for your husband - a friend of mine called Dick had a rituximab a few months ago and has made a really good recovery. He's an old-timer with HCL, like me - we met for a weekend break way back in about 2004, so many years later we're both still alive and kicking, and have had many good treatment-free years.
My blood levels recovered slowly for the first month or so, then improved a lot. Don't know about my monocytes - since my chemo in May my haemoglobin has recovered to 145 from 99, neuts 3.6 up from a low of 0.3 both in the normal range now, though platelets a bit low at at 126, had been way low at 77.
You could always ring Leukaemia Care who have a chat line for advice on HCL.
Gosh, hope you don't need another hip replacement. A new puppy will keep you busy and active - I've just had a visit from my daughter Kate with her 4 month old spaniel that she adores, he's a right character.
I'm feeling pretty ok - certainly got stronger every month since the chemo in May, am now back doing regular 4 or 5 mile walks with a couple of local groups, though I'm reluctant to go past a bench without testing it out.
So lovely to hear from you both- and thank you for your encouraging responses including the hard challenges you are facing.
Here goes with some numbers after Chemo (Cladribine & Retuximab: last one in April) from the most recent test:
Haemo 134 (from 69 with the transfusion) , rbc 4.3 (from 2.1), platelets 141(from 2.4), White count 2.0 (from 1.9) , Neutrophil 1.3(from 1.9), Lymphocytes 0.5, Monocytes 0.1
He also checks other markers such as phosphate and calcium. Not sure what these indicate personally but he does.
It is really hard to determine if the treatment is still working or if he is again about to dip into a slow regression. Fortunately, he feels well in himself, but with a small child we do get concerned about long term planning. It is helpful to know that it took a long time for you, Wendy, to recover from it too.
He says he knows about Leukaemia Care so he will look properly into it. We do not do FB so I guess we are out for these FB groups.
