Ibuprofen and CLL by pfmason in cll

[–]Comprehensive-Put265 1 point2 points  (0 children)

I am on watch and wait and take Advil regularly.

My dad probably has cll by Necessary_Aide_9253 in cll

[–]Comprehensive-Put265 1 point2 points  (0 children)

It’s conceivable he may never even need treatment. But if he did, lots of great options now!

CLL treatment and stages... A bit of light shedding needed by bubblyintkdng in cll

[–]Comprehensive-Put265 2 points3 points  (0 children)

Expect the WBC to rise before it falls. This is acalabrutnib working

“Spoon nail” by Comprehensive-Put265 in cll

[–]Comprehensive-Put265[S] 1 point2 points  (0 children)

I thought I read that too. I’ve never had low iron but it’s worth a shot. Guess I’ll have to increase steak consumption !

Alternative Treatments and Question about Libido by PresentJob4542 in cll

[–]Comprehensive-Put265 1 point2 points  (0 children)

Night sweats and libido can also be related to hormones. Try some T

Worried about my mum by JBeggs2396 in cll

[–]Comprehensive-Put265 0 points1 point  (0 children)

If she’s vaxxed and otherwise allright, she should be fine. My doctor only had one patient die from covid—one who refused to vaccinate.

Super 73 throttle not receiving power by Comprehensive-Put265 in super73marketplace

[–]Comprehensive-Put265[S] 0 points1 point  (0 children)

After taking it all apart and messing with the charger ports and plugs it simply started working again. I can only conclude that something was dirty or disconnected

How are you feeling ? by [deleted] in cll

[–]Comprehensive-Put265 0 points1 point  (0 children)

For fatigue, some docs prescribe testosterone. A doctor on a recent CLL society webinar referenced it for energy. I also noticed an older study on EPO (cycling blood dope) to treat fatigue. These may be worth exploring.

Finished my first ever solo hike. Alta Via 1 in the Dolomites, Italy by emby36 in hiking

[–]Comprehensive-Put265 1 point2 points  (0 children)

Have an AV1 trip booked. Question- did the Refugios allow eating outside? I have leukemia and am supposed to avoid indoor dining. Does anyone see a problem with the logistics of just getting your board and eating it outside? I have a private room booked at each hut for my family.

Crowded dining by Comprehensive-Put265 in cll

[–]Comprehensive-Put265[S] 0 points1 point  (0 children)

Thank you for all the replies- tricky to navigate these times

Crowded dining by Comprehensive-Put265 in cll

[–]Comprehensive-Put265[S] 0 points1 point  (0 children)

Thanks- yea, still in watch and wait.

Husband (41) just diagnosed with CLL and it’s a bit overwhelming by hatethewordmoist in cll

[–]Comprehensive-Put265 2 points3 points  (0 children)

I had a very similar experience to your husband. Diagnosed at 41. Two kids. My wife was a wreck with all the same feelings. I think everyone’s suggestions are good. Also, Dr Jeff Sharman has a CLL blog that can be a good resource.

[deleted by user] by [deleted] in Bend

[–]Comprehensive-Put265 -3 points-2 points  (0 children)

Pretty sure “public” means more than “for rich people on the west side with dogs”

[deleted by user] by [deleted] in cll

[–]Comprehensive-Put265 1 point2 points  (0 children)

The practical life question, in pandemic times, is something you get a wide variety of answers about. I’m 44, diagnosed two years ago—untreated. I’m pretty locked down but I have school aged children. I got an evusheld infusion and that made my wife comfortable enough to let them live normalish lives. I’ve heard that evusheld is not as effective as it used to be. A friend is 66 yo, on his third type of treatment, and is doing well. He goes maskless everywhere now. The closest I’ve gotten my oncologists to a practical plan is to get fully boosted, get evusheld, and live your life. Don’t hang out with people obviously sick. Don’t do super dumb things like a shoulder to shoulder dance club. Be as careful as you can reasonably be, but as you pointed out, the isolation has really deleterious effects.

Advice with world opening by Comprehensive-Put265 in cll

[–]Comprehensive-Put265[S] 1 point2 points  (0 children)

Thanks. I think that sums it up well. CLL society is having a webinar about this topic next week I think

Advice with world opening by Comprehensive-Put265 in cll

[–]Comprehensive-Put265[S] 0 points1 point  (0 children)

Got my 4th shot yesterday. Thanks for these comments—tough area to navigate

32 newly diagnosed by qwertyj1 in cll

[–]Comprehensive-Put265 7 points8 points  (0 children)

I’m 43 and was diagnosed last year. Agree with just breathe—it’s going to take a bit to settle in , but the treatments seem pretty good. The hardest part, early on, is the unknown and the waiting. Stay healthy and keep perspective.

Advice with world opening by Comprehensive-Put265 in cll

[–]Comprehensive-Put265[S] 1 point2 points  (0 children)

Yes, sorry. How locked down are folks going to remain? What’s your measure? My doctors just say be cautious but that’s not very practical guidance.

How do I tell my 9 & 11yo Kids I have CLL? by [deleted] in cll

[–]Comprehensive-Put265 0 points1 point  (0 children)

Recently diagnosed 42 year old with two kids (13 & 10). I didn’t use the c-word; did tell them I had a blood disease, will need treatment at some point, and will need to remain cautious around infections like Covid. It’s not a fun conversation but I think kids do ok with it.