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CLL Support Association
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Unmutated been WW 10 years

A good-ish story: I have unmutated CLL, diagnosed 10 years ago when I was 52. I upturned my life about five years in, turned to macrobiotics, meditation, less stress. Recently I left a bad marriage. I haven't needed treatment all these years. So the WW can last a long time even with unmutated. Alas, now my WBC is up, my spleen is 13 cm and I'm showing signs of slight anemia. Doc says it's time to treat. I've got six weeks before labs come back to tell him which drugs are better. Until then, I'm pulling out all the stops like I read some of you have. Drawing blood today to get a baseline and will see if I can make changes. Agree with somebody here, better not to wait til you need treatment to try alt options. Super tricky physically and head-state wise to say not to the drugs. What a ride.

26 Replies
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I’ve edited your title from ‘unmated’ to ‘unmutated’ debralynn 😉

Just thought, did you mean it to say ‘unmated?’

Best wishes,

Newdawn

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Well if she just got out of a bad marriage then she's unmated also. HAHA

I was 18yrs unmutated before treatment.

john

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AMAZING!

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Yes, correct, ha, thanks!

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AussieNeil has corrected it for you. I didn’t want to until I’d checked out you weren’t referring to your relationship status which you’d alluded to! 😊

Newdawn

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Ha, thank you.

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Thank you, interesting typo, given marriage status!

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I’m a little confused as to what you’re saying to be honest debralynn. Are you saying you want to reject treatment in favour of alternative methods or that you want to get into better shape for treatment?

A 13 cm spleen isn’t massively enlarged really. A normal spleen is approx 11cm. Mine is 20cm presently. How bad is your anaemia/haemoglobin levels? Are these the only reasons treatment is being suggested?

Best wishes,

Newdawn

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Thank you everybody, can everybody in this thread see this? Thank you for your reply. My hemoglobin is 9.8, RBC on the low side of normal. Doc seemed alarmed at size of spleen, interesting. Is causing some discomfort, but not 24-7. My doc cited a number of concerns: WBC up to 192k from 115K in March (not a six-month doubling, but significant). 95 percent lymphocytes. Slight anemia and slight involvement liver and kidney.( Liver on exam slightly enlarged, with ALP at 142. Kidney BUN slightly elevated at 24.) No night sweats, although feel overheated during the day often. No excessive fatigue, no different than it's always been (though doc is convinced I'm in denial). I don't feel bad in general, I go about all my activities. Spleen is increasingly uncomfortable, but not 24-7, most typically after I eat and I can calm it by lying down. I think what tipped him over is staph infections in bug bites this summer: Four occasions needing four antibiotics, responded well. IGs are super low:

IGG257 (mg/dL600 - 1,560 mg/dLL

IGA<10 mg/dL90 - 410 mg/dLL

IGM<20 mg/dL

Does this still sound like treatment may be premature?

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You described ‘slight anaemia’ but at 9.8 your haemoglobin is significantly reduced (below 10) for treatment to be considered necessary. Sounds like your doc could be concerned that your enlarged spleen is ‘gobbling’ up the haemoglobin and possibly platelets.

Given this picture and your general issues, I’m not surprised treatment is on the cards to be honest debralynn.

Your IgG is low at 257 which may be the reason you’ve battled infections following bug bites. Presumably you’re not on IVIG infusions?

You need to be guided by your haematologist but that presentation looks like treatment time to me (purely as an observation from another patient).

Do you want to make this post private to the community?

Best wishes,

Newdawn

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Thank you for your honest comments. I'm not sure what this means, making the post private to the community.

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When you post, you are given the option of leaving your post open/unlocked for others searching for answers, or limiting viewing to just this community (locked/private). This Help article explains it:

support.healthunlocked.com/...

You can edit your posts/replies at any time by selecting the 'v' below your submission and selecting 'Edit'.

Neil

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Sorry for confusion. I am undecided about treatment at this point as I wait for oncologist to report results of bloodwork to determine if my prognostic markers have changed in the last 10 years. Follow-up appointment is Dec 11, at which point he will tell me which treatment he is recommending. I am in the meanwhile (tomorrow) seeing a new alternative practitioner to look at options in that arena, to include TCM (Chinese herbs, acupuncture) and an uptick in macro and other lifestyle practices to see if I can provoke changes on my own before then.

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Doesn't sound like ur are quite ready for treatment. Depends on test results.

What is ur HGB? Any night sweats?

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See above

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Yes .... what are your symptoms, blood counts (especially ALC), and other reasons that led your oncologist to think you need treatment now?

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See above

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You've done well staying on watch and wait for 10 years with unmutated CLL, but I too am puzzled by why your doctor considers that it is time to treat. Did he say why? Of what you've shared, only worsening anaemia could be a reason to start treatment, with recognised guidelines use haemoglobin falling below 10/100 as a trigger point to start treatment discussions.

Given you are in the USA, why not take up the opportunity for a video consultation with a CLL Specialist courtesy of the CLL Society Expert Access programme? cllsociety.org/cll-society-...

If you are in the situation where you will need treatment soon, you haven't given yourself much time to at least slow progression and hopefully reverse the effects of CLL by other than recommended aproaches. This post may help you in your search, but there's a huge difference between the proven effectiveness of approved drugs and alternatives: healthunlocked.com/cllsuppo...

Neil

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So happy for you Dawn and so interesting to read about your experience with Mr H. I live in York so maybe something for me to think about, he sounds very different to my Dr!

Wishing you well with your cateract too

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WBC is getting high 192,000 they might be the sign to treat as it keeps rising . Not sure what a CLL specialist would use though

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Hi Debralynn. That’s wonderful you have been able to be on WW that long. It seems you’ve cleared out the bad things and on with the new.

I too am unmutated. I was diagnosed in 2016 at 70. By January 2018 I was told to start treatment. I’m on Ibrutinib and feeling great. Because of your age you may be able to have a newer treatment.

Best of luck. Keep us posted.

Pam

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Good luck!

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Hi Debralynn. That’s wonderful you have been able to be on WW that long. It seems you’ve cleared out the bad things and on with the new.

I too am unmutated. I was diagnosed in 2016 at 70. By January 2018 I was told to start treatment. I’m on Ibrutinib and feeling great. Because of your age you may be able to have a newer treatment.

Best of luck. Keep us posted.

Pam

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Hi! What do you mean by you will tell the doctor which drugs are better?

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I wondered about that too Lola but reading it again - ‘I've got six weeks before labs come back to tell him which drugs are better’, it’s clear she means the labs will tell/inform the doctor which drugs are better/most appropriate.

Newdawn

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Yes, it's the labs that will inform him, not me.

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