CLL - newly diagnosed

Posted by gerryk @gerryk, Sep 2, 2016

My doctor discovered smudge cells as a pre-cursor to CLL in Dec. 2015. This spring of 2016, my lyphmocyte count put over the 5000 threshold wherein I now have CLL. I am 68.

I am blessed that this is a CHRONIC versus an ACUTE cancer.

That said, I am aware that I will ultimately require some form of treatment.

It appears from the information that I have read that the forms of treatment are:

1. CHEMOTHERAPY;
2. IMBRUVICA (IMBRUTINIB)
3. IMMUNOTHERAPY

I am somewhat reluctant to consider chemotherapy.

I would be interested in hearing from CLL patients who have been exposed to EITHER IMBRUVICA or, IMMUNOTHERAPY........the success, failure, side effects etc.

Thank you so much for taking the time to respond.

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I'm 58 and was diagnosed with CLL about 6 months ago. The WBC and HGC counts have crossed into abnormal range but my Oncologist has suggested no intervention till we see some symptoms - which is fine with me since I like natural treatment over medication.

I have been in pretty good health and haven't been sick in years but the Oncologist has warned me that as my real white blood cell count go down, I'll become susceptible to secondary infections so that part is worrisome.

I tried Green tea extract (with egcg) but it caused me throat inflammation so looking to switch to matcha tea extract as it's supposed to be milder.

For past year, I've been having persistent skin issues (warts) and eye infections so maybe this is what secondary infections look like - although my Dermatologist, Ophthalmologist and Oncologist don't see any connection with CLL.
Anyone heard of CLL correlation with skin or eye issues?

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I have an abundance of discharge from my left eye, which is very annoying. From time to time my left eye gets tender and the eye rim, usually the bottom rim can get sensitive and a little red. I take a warm washcloth and hold it and wipe it over my eye in the evening, doing that several times and again in the morning. Usually that fixes the problem for quite awhile. I do find sun and wind can bring it on more often. I have learned to clean out my eye quite often during the day.

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Now you have me wondering. I recently started have a discharge but had attributed that to finally being off the steroid eye drops following cataract surgery. I did not have this with the other eye but was on the drops longer and this eye had a semi-dropless surgery,

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@marytheresacll

I have an abundance of discharge from my left eye, which is very annoying. From time to time my left eye gets tender and the eye rim, usually the bottom rim can get sensitive and a little red. I take a warm washcloth and hold it and wipe it over my eye in the evening, doing that several times and again in the morning. Usually that fixes the problem for quite awhile. I do find sun and wind can bring it on more often. I have learned to clean out my eye quite often during the day.

Jump to this post

I found this so we may not be imagining things:
https://pubmed.ncbi.nlm.nih.gov/32407752/
Think I will now alert my ophthalmologist so he can monitor my situation.

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@marytheresacll

I have an abundance of discharge from my left eye, which is very annoying. From time to time my left eye gets tender and the eye rim, usually the bottom rim can get sensitive and a little red. I take a warm washcloth and hold it and wipe it over my eye in the evening, doing that several times and again in the morning. Usually that fixes the problem for quite awhile. I do find sun and wind can bring it on more often. I have learned to clean out my eye quite often during the day.

Jump to this post

My ophthalmologist says its sever dry eye that can cause infection. I was prescribed steroid antibiotic drops that took care of the issue but once the medication course was complete, the issue was back. Then they prescribed another steroid antibiotic which helped but the issue was back again in a week.
3rd time, they gave steroid antibiotic + restatis (to numb the nerves at back of eye) + artificial tears + night eye ointment + nasal spray. It seems to be holding up, although my eyes still turn red sometimes and have increased sensivity.
I've also incorporated washing may eyes with warm water in morning - similar to warm compress.
I believe these are all trying to fix the symptoms but not the root cause of what's causing the severe dry eyes all of a sudden.

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@normahorn

I found this so we may not be imagining things:
https://pubmed.ncbi.nlm.nih.gov/32407752/
Think I will now alert my ophthalmologist so he can monitor my situation.

Jump to this post

I find this article kind of scary when it talks about the eye infections, where it says Eye infections were associated with the poorest prognosis as 47% of patients died, with a 6 month median survival. What the heck ?

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That could mean we have to be more diligent than others need to be if there is any indication of an infection. I was not too thrilled with my ophthalmologist's office staff when I reported my new discharge. I was only asking that it be noted in my chart to monitor me for any sign of infection. I will print that article out before my next appointment. I wish they had a patient portal so I could email them a link to it.

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