Been awhile!: USA: 2014 - present 2014: Spleen... - CLL Support

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Been awhile!

tedrog profile image
4 Replies

USA: 2014 - present

2014:

Spleen upper limits of normal; Liver mild enlargement; shotty lymph nodes at axillary and mediastinal; multiple renal cyst seen bilaterally; diverticulosis in the sigmoid colon without vidence of inflammation; Zap-70+; deletions at 11q24 and 13q14; unmutated IgVH. WBC from Aug 2016 to Dec 2017: 20 to 151.

I guess I could have some lymph counts, oops, nothing spectacular.

Hematologist did watchful waiting from September 2014 until December 2017, when twice during this time, the hema dr wanted me to start Ibrutinib, once in 2016, again and finally Dec 2017. Dec 2017, he was basically saying my pcp or someone could monitor me if I wasn't going to take it. I asked to see CLL Specialist first, thus I went off to Moffitt for a second opinion in March 2018, Dr Pinilla.

Dr Pinilla, with only my forwarded records, said forget your CLL, you also have CML.

The previous Dr had missed it. He CML we must treat. I asked if that would be the same Ibrutinib? No. Dasatinib (Sprycel). I asked: had I only CLL would he have said I should take the Ibrutinib. He said: No. I'd have sent you home.

Note: last time I saw him, 3 months ago, (from every 2 weeks to every 3 months (currently), he said he chose Sprycel (100mg daily) because there is "some" evidence of it helping CLL.

I had always refused BMB request. I told Dr Pinilla I would do 1 (one); I have had 2 (two), pre and post 6 months treatment. Whatever it means, my BCR-ABL(?), has gone from 100 to 10 to .0somethingorother. Dr Pinilla says I will this dose forever. That we may never treat the CLL.

At first, during treatment, my WBC went near 200 to almost below normal in 6 months, but was expected to rise again, 3 months ago it is 20+. Dr Pinilla says this is the CLL.

My symtoms were mild. Tired, weak, listless, nonconsistent/occassional night sweats.

I only ever was to Hematology when my PCP dentified 10,000+ WBC; no real complaints from me. Tired, figured I was getting old having burnt the candle from both ends. ;)

I feel ... better, indeed after a year. Perhaps noticebly at 6 months. I'm not all jumping around (perhaps I literally should be, I don't move much from my chair, changed my diet, lots of water and salad, went from 240 to 195. My attitude -- while I have many other problems, inclyding mental mental health -- was, from get go starting with Dr Pinilla was: I intend and I will be cured in 6 months, I said I ay his first complete cured, and would be able to stop the Sprycel! ...He says, No. Still, well... I AM! :) ;) no really!!!!! plus it's Sprycel, so I'll keep it up a despite myself... and live to 150 via Sprycel longevity effect. ... so look forward to many more reports from me. ;)

If it wasn't for the US Veterans Administration... none of this ever would have occurred (and still don't like them much:(. 🇺🇸 ... we will dump-the-chump, don't you worry, help accepted. ;)

I will turn 65 May 10.

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tedrog
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Jm954 profile image
Jm954Administrator

I'm so pleased to hear from you tedrog and that you are doing really well on both your CML and CLL fronts.

Keep taking the Sprycel, never miss a dose and you may be one of the lucky ones to be able to stop it at some point in the future, although it could be a couple of years yet to get the deep remission you need to do that. I think I posted some links in my replies to your previous posts about that.

You have every reason to be so happy :) . Enjoy life!

Jackie

tedrog profile image
tedrog in reply to Jm954

This group, special mention to Jackie, is the best. My gratitude is understated.

I will add that having been sick with a fraction of fever, severe headache, extreme chills, x 4 days past — day after visiting busy oral surgeon (full bite xray, etc), 5 weeks into Moh’s lip surgery recovery (top lip, cupid's bow area SCC; natural healing no stitches; plus extreme stressful family crisis news; .... I have better picture of my immune system’s limits — vast, but somewhat “weakened” i’m sure.

however, chest and neck night-sweats have been occurring during this illness. I hope after tonight they are gone, tip: where a tee-shirt, change it in the night.

—I ramble pedantically, I guess. :(

Jm954 profile image
Jm954Administrator in reply to tedrog

tedrog, thank you for the kind words.

Sorry to hear about the other issues, I hope they soon resolve and life improves.

Take care,

Jackie

Miller1960 profile image
Miller1960

Good news.So glad you got the answers you needed. Keep up the good work.

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