Hi Folks, It’s now over 5 weeks since I had surgery to remove a ruptured spleen. And at last I’m beginning to feel “normal” again. Appetite returning, tummy not painful, no more fevers, cough much less than it was. Phew… A few days ago we went on one of our favourite country walks, and it felt wonderful. I walked through fields, breathing in cool, fresh air and felt so glad to be alive. Hubby said I was walking faster than I’d done for years! I think the little red squirrel may be getting her bushy tail back…
But it’s not been an easy ride…
Going back a bit – my spleen had been the main reason I needed treatment for CLL (after 8 years of Watch and Wait). It had become VERY enlarged, pressing on my stomach so I couldn’t eat normally. I spent a lot of time considering treatment options, but a clinical trial with a new agent sounded a good idea at the time.
So I started on the CALiBRe trial (Just Idelalisib tablets - not a combination therapy). Within a few days, the spleen had shrunk dramatically! I felt GOOD…
However, after a couple of months I developed a nasty rash, so was advised to stop the Idela (doctor’s shorthand for Idelalisib), for a while. The rash started to ease off, but within a few days, my spleen had ballooned up to be as big as before. I developed a high fever, was admitted to hospital, and a few days later was diagnosed with a ruptured spleen!
Major abdominal surgery is not fun… I had a nasty cough afterwards – very painful on the stitches. I continued to have fevers every evening for a couple of weeks. I was on large doses of antibiotics, which gave me another itchy rash (and I’d hardly recovered from the Idela rash). Blood tests were “all over the place”. I was very nauseated – hardly ate - and became positively skeletal.
My wound healed quickly though, and I was able to go home a week after surgery. What a relief.. (I wrote a lot more about my hospital experiences, but decided it was too much detail. Let me know if you’re interested and I can p.m it to you.)
Many thanks to all of you who wrote such lovely messages to Peter and me, during those difficult days. It was SUCH an encouragement, to hear from you.
My “adventures with Idelalisib” have brought it home to me, that these are still early days, with these new drugs. They can be lifesavers but unexpected "adverse events" are still being reported... However, right now, I’m gaining energy every day, and feel grateful to be alive.