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A MyLeukemiaTeam Member asked a question 💭
Toledo, OH

I just wanted to tell everyone that has a chronic form of leukemia that you should pay attention to the direction of your red blood cells, your hemoglobin and your platelet count. In my case, I have CLL and was recently in the hospital with hemolytic anemia. And had I paid attention I might’ve been able to prevent the Hospitalization

June 20
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Answer Summary

After a hospitalization for hemolytic anemia, a member with CLL urged the community to closely monitor red blood cell levels, hemoglobin, and... Read more

After a hospitalization for hemolytic anemia, a member with CLL urged the community to closely monitor red blood cell levels, hemoglobin, and platelet counts. Several members shared how they actively track their own lab results, ask questions at appointments, and work closely with their care teams, with some noting they get blood draws as often as weekly. A recurring theme was that self-advocacy and learning to understand your own labs can make a real difference in catching dangerous changes early.

A MyLeukemiaTeam Member

Hello John. Labs are always done. I get IgG infusions (IVIG) every 42 days and I see my hematologist every other time. So basically every 3 months. As my WBC rose, my platelets tanked and that is when I started taking Calquence. The oral chemotherapy got those numbers back to normal. My reds were funky for a few months but they got back into alignment. Take care.

June 30
A MyLeukemiaTeam Member

John, you are 1000% correct--we must be maniacally focused on our cells: red-all components and activities including Hg and Hct. White including neutrophils AND red and white cell shape ( all that can be found in the CBC and the CMP also known as a chem14). I am in a very minor state from most of our colleagues here, yet my hematologist has me getting blood draws EVERY week. We as a team, my whole team watch those numbers maniacally to the point that when I see them I can tell you the state of my system. I'm so surprised that I don't hear the majority of the individuals here that are way worse aren't under that level of scrutiny.
And we MUST listen and learn from the signals of our bodies even with out weekly draws. WE can ill afford most of the time even a week or two of putting off contacting our medical team when we feel more off then usual. I am so very sorry you experienced that episode as we call them--I AM eternally grateful you survived!!
Teams: learn your body, listen to its rhythms, its pokes and pains. Please do NOT be put off by the "oohhh you don't look ill" comments to guilt you into believing there is nothing serious about your condition. In the blink of an eye you can go from the life of the party to multiple transfusions, IV infusions, hourly blood draws and the uncomfortable hospital bed. Ask, ask, ask, study, study, study and get your caregiver involved.

Get some rest John, as ALL need your presence! Hugs, Mich

June 20
A MyLeukemiaTeam Member

JOhn, I am so sorry for your "episode." I hope you are healilng well and appreciate your warning to all of us. I have just trusted my docs to be vigilant. Guess I need to pay more attention.Please do take care of yourself. You are a very valued voice here.

June 20
A MyLeukemiaTeam Member

Hi John,
I have been pedantic on my blood levels and what each test for the blood does. I know my haematologist gets annoyed when I bring to his attention the change in blood results. I can’t be more out there about knowing your bloods. I watched the lymphocytes climb to such a level that I knew it was time to start treatment.
Even though my bloods are going through the same levels as just before I started treatment , my immunoglobulin levels now are minimal , this needs to be asked when you have your next appointment. John you have to know what all your blood levels should be and bring to attention the bloods that are outside the normal levels.

June 23
A MyLeukemiaTeam Member

Thank you John for the information, I am one of the lucky ones where the Calquence is working and it is bringing my numbers down almost to normal levels, BUT, I see the oncologist every 3 months for now and I visit my Friendly Neighborhood Vampires (Lab Techs, Thank God for them) sometimes monthly.
Prayers go out to you. Get Well

June 23

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A MyLeukemiaTeam Member asked a question 💭
San Francisco, CA