First Time Post: CLL in full relapse mode + vaccines and Calquence next line of defense.

[TimDeeSeattle]

Hi all - my name is Tim and Im from Seattle.

This is my first post here though I’ve been following HealthUnlocked for my CLL diagnosis back in 2018. Unfortunately my leukemia is back after nearly 2 years of remission with FCR. I’ve undergone the typical CLL tests and was ‘relieved’ to find it had not transformed into anything worse - so I got that going for me. Oncologists at both Fred Hutch and Kaiser recommended getting on either ibruntinib or acalbrutinib. Because I have a pre-existing (heart) arrhythmia it was decided to go with the Calquence. I will start that up as early as next week and am very much looking forward to some relief from this horrible fatigue, swollen lymph nodes and brain fog! Im ‘only’ 55 and had hoped the FCR chemo I received 2 years ago when first diagnosed would have kept me symptom free for a while longer - such is life.

Today I got my first dose of Covid vaccine - the Pfizer 2 dose. Everything I’ve read and discussed with my oncologists says it was the sound move. Im very curious to see how bad, if at all, some of the side-effects are with my CLL in full relapse mode.

Stay tuned and thanks for providing all the great insight - stay positive.

Tim D.

Ps

I am a photographer and wanted to post a recent sunset that helped cheer me up.

[skykomish]

Hi Tim. You have every reason to expect excellent results from your new treatment. I hope that it goes very well for you and that you get some relief from your symptoms! Lovely picture. Thanks for sharing it.

[TimDeeSeattle in reply to skykomish]

Thank you 🙏

[GMa27]

Gorgeous picture!

I had FCR 2+ years ago.

Sorry to hear you relapsed.

What are ur markers?

Good idea to avoid Ibrutinib if you have heart concerns. Calquence is a successful drug. 💕

[TimDeeSeattle in reply to GMa27]

Thanks - red/white/Igm/Igh/neutrophils/platelets all running low as of January. Lymphocytes nearing 3000. Not horrible, but combined with nodes and fatigue - difficult right now.

[GMa27 in reply to TimDeeSeattle]

By markers I meant deletions and mutation status. Like 17 p, 13 q etc.

[TimDeeSeattle in reply to GMa27]

Oh yes, sorry… The markers were all favorable including IGHV mutation. The one glaring exception is that FISH tests found my IGH ‘indeterminate’ for translocation. There have been some chromosomal changes but not enough to say with specificity - that is worrisome in itself because of negative prognostications.

[SofiaDeo in reply to TimDeeSeattle]

Please remember "negative prognostications" are based on older treatments from a decade or more ago. Most all that data is retrospective & percentages are likely out of date. I think the newer treatment options allow us to use our markers as indicators which treatments are more likely to be successful with minimum side effects. Like a particular reading on a EKG indicates a particular heart arrhythmia, and the docs use drugs that target that arrhythmia. Before EKG they had to treat "abnormal heart sounds". I think our markers are more like the heart analogy nowadays.

[nanasu]

I`m so sorry about the relapse. I started on calquence 4 weeks ago but for me it was for 2nd bout of AIHA. So far I`ve been good on it; no side affects at all. I had a low HB of 9.4 when I started but within 3-4 days I was starting to feel better with more energy.

Hope it can work for you too. From what I`ve read people are having good results with it.

Love the picture.....gorgeous sunset.

Wishing you all the best with your treatment.......keep us up to date as to how you go.

Take care.

[Bill1288]

Tim D: I have AFIB. Got it when on Ibrutinib, switched to Acalabrutinib. Have been on acalabrutinib for 21 months. Doing well. It has really been good for me. Wishing you all the best. Also I have received both doses of Pfizer vaccine. Just had a very minor sore arm.

Bill