WBC rising

[Moonmyst]

After 2 years in remission post B+R my white count is starting to go up. In Aug. it was 7.925, Dec 8 was 11.78, and last week was 15.05. I have to go for another CBC next week. I am also noticing periods of feeling a little out of breath with little exertion. I'm scared that this might be heading down a road I don't wish to revisit yet. Perhaps it is too soon to worry as I may not have enough info yet. These numbers are low compared to what they were when I started my first treatment but I don't like to see them going up so quickly... my mind is racing.

Thoughts and words of encouragement fully appreciated as I ride the roller coaster (did I mention that I hate roller coasters...)

[CycleWonder]

I am sorry your period of calm may be coming to a close. In this case, it’s important to focus on the absolute lymphocyte count rather than the WBC. And let your CLL specialist worry for you.

[Moonmyst in reply to CycleWonder]

Valuable insight, CycleWonder. Thank you for this! I'm not very good at letting anyone else worry for me but, in this case, I will definitely try to leave this with my doc. FWIW, my absolute lymphocyte count has gone from 3 (back in Aug) to 9.6 (last week) Holding my breath to see what next week brings.

[CycleWonder in reply to Moonmyst]

Thank you for the new information. I am not medically trained and there are others in this forum who have much more experience than me. I have just started treatment and managed five years officially on watch and wait before needing treatment.

Normally a lymphocyte count of 9.6, while indicative that yes, your CLL is waking up again, is not a reason to panic. It may mean you are now in Watch and Worry again. Some people begin to feel CLL symptoms right away; others not for awhile.

Now might be a good time to catch up on vaccinations while your immune system is working better than it will later. Tetanus shots are recommended every 10 years. I mention this because I fell this week and got a scrape on my shin. I might have been exposed to tetanus and it’s been more than 10 years since my last tetanus shot. But, since I’m in treatment, the tetanus shot may not have much effect. The good news is that there are no tetanus symptoms as if yet. So even though I hate shots, get the non live vaccines you are due for now.

And again, do your best to sleep, exercise, eat well, and not worry!

[Stamphappy]

Moonmyst, what a beautiful name & avatar you chose. Makes me think of the Harry Potter series - love it.I am in W&W so I do not have experience to offer you. But I'd like to encourage you. The brave souls whom have participated in studies have taught the medical community a great deal. Especially in recent years.

We can knock CLL back with the new targeted treatments . We even have options amongst those drugs.

Additionally, we have each other! This community is absolutely amazing and I have no doubt at least one of us will be able to offer you guidance through your journey. CycleWonder has already done so. We're all in this together in good days and in the not so great ones too. So, reach out as often as you need 🫂.

Wishing you all the best.

[Moonmyst in reply to Stamphappy]

Thank you for your kind words of encouragement, Stamphappy. It means so much to know others "get" the challenges that come with simply not knowing what is coming next and when. I'm ok knowing that, at some point, I will probably have to have more treatment. It just stinks not having much control and having to learn to be patient. Thankyou for your support - know that I'm here rooting for your as well!

[Stamphappy in reply to Moonmyst]

Yes, the support on this site is simply amazing. I really don't think I would have gotten through this past year so well without all of these wonderful wonderful people. I'm glad I could help you feel better today 😊

[Rohail]

I have never had treatment and recently diagnosed. But my wbc and alc numbers match yours. My understanding is those numbers are not high so wouldn't you just resume W&W until you experience any B symptoms?

[Moonmyst]

You are right, the numbers alone aren't that bad. They are nowhere near as high as when I started treatment. What concerns me is 1) the lymph # moved fairly quickly over a few weeks, and 2) I do have other symptoms creeping in that I had before - shortness of breath and fatigue. I recognize that I probably just need to settle down and monitor but, as you know, W/W is hard...

[LeoPa]

Focus on your ALC not WBC. The trend is what matters. Let's hope it stops rising and stabilizes.