Hi everyone,
I was idly cooking breakfast with NPR Weekend Edition on in the background this morning (1.23), when this story, about a CLL patient's life during the pandemic, came on.
Nothing new here, really. Just interesting to hear CLL being talked about in the news, I suppose.
Hope the link works for you.
--Dave!
Hi Dave,Thank you for posting this patient’s perspective, which is likely in alignment with so many of our own lives.
Yes, two years of Covid Jail is beginning to wear me out as well. My hope is that Omicron spends the next month teaching the unwilling unvaccinated a lesson about viruses. While at the same time, the therapeutics become more widely available. Perhaps we will get parole after that!
Hi Dave thanks for this. Just been catching up and followed the link to Karen's story. Very interesting and really resonated with me. I'm nearing the end now of my 12 months of obinutuzumab and venetoclax with just 2 months left of V. Strangely I feel more tired now than I did 3 months ago although the blood numbers are generally OK. The consultant explained that our bodies (in particular the bone marrow) are in a constant battle and struggle against the disease itself and the drugs which are effectively poison! So near the end of treatment the poor old bone marrow has been working overtime for months and has had enough - hence the exhaustion. She tells me all this improves in the months after you come off the drugs. Let's hope she is right. Anyway thanks for the link and I really hope you are doing OK. Very best wishes. Patrick
prbs2707..... You and I are on the same schedule it appears. The last week in February I finish my Venclexta and I go for my last CAT scan, labwork, and oncologist visit for a long interval, I hope. By the way, last week I had my SECOND Moderna booster shot (4 jabs total). I am part of the US LSS study and will go in 3 weeks for a Covid antibody test. The previous 3 vaccinations have produced "no detectable antibodies", but I understand the second booster has stimulated some positive antibody results in some CLL patients. I look to March 1st as a "new beginning" for my blood to begin to return to normal, I get rid of the fatigue and lethargy and develop the ability to spend 45 minutes on the elliptical machine as I once did.
Hi and thanks for the message. So almost O&V buddies on opposite sides of the pond! So glad you are doing well and I will follow your progress with great interest. Please keep us updated on how it goes post treatment. Soon time to dust of the elliptical - 45 mins! Wow I'm super impressed. Take care and lots of luck. Patrick
Thank for sharing the NPR li k.
DRM18, thank you for sharing Karen's NPR interview. I, in W&W now 3 1/2 years WBC 99.8, no treatment, and almost 73 yrs "young", have learned each of us experience this "journey" differently. I admire Karen's thoughts for her family. I relate to that. I have a married son and through him have 8 grandkids(10-33) and 7 great grandkids(newborn to 10). I have great times with them(Sunday church and lunch), and 12 of them and I have daily fun family chats through texts, facetime, photos, emojis and videos and prayer and bible study. They all know I have CLL. I am fortunate. This forum has enabled me to keep positive on this "journey", that I did not have on my life plan! Being on this "journey" with all of you makes it easier. Thank you, and I pray a cure for us comes soon!!! 🙂
DRM18........ Thanks for this very interesting posting. I find fatigue and lethargy to be the biggest challenge with CLL. It is very unfortunate for us that we developed this disease in the middle of a pandemic. ☹️
Although I know nothing about her particular disease progression, I was disappointed that the story NPR chose to present was so negative. We can all relate to the imprisonment she has felt while avoiding being in situations that could give her Covid. Nevertheless, she is somewhat atypical for a CLL patient, being a young woman with a severe enough case that she is contemplating her death. "HOLLIS: I have felt like abandoning everything I'm doing because I feel, there's no point. I'm going to get sick anyway. And if I do, I know what the statistics are for blood cancer patients. And they're not good. " I can't tell if Hollis means she will get sick anyway with Covid, but I am sorry NPR presented such a scary scenario when CLL is not the killer that other blood cancers may be. I am going to write NPR expressing my concerns.
Extending HealthUnlocked on Patient Power
Patient Power CLL & Fatigue 2022-10-19.
CLL Tracker - Patient Data
CLL Ireland national Patient and Carer information day in Dublin June 8th
Southampton CLL patient meeting
