SLL/CLL Numbers

[Egypt58]

Thanks for all of you with your previous replies. As you know I have been diagnosed last month with SLL/CLL and now I have all my test results. I hope you can share your experience with similar results to mine and dice me with what to expect:

1) CBC all numbers are within the normal range

2) Flow Test

i) Minor CD5+ monoclonal B-cell population (2.5% of sample) with CLL/SLL immunonphnotype

ii) Tumor cells are CD49d+ (>30% staining), which unfavorable prognostic features

iii) ALC=2200

3) IGVH Unmutated (unfavorable prognostic indicator in SLL/CLL

4) Molecular test = Negative:TP53 pathogenic NOT DETECTED

5) FISH test = Negative fish results for CLL panel analysis, no evidence of a structural chromosomal alteration involving the loci examined on chromosomes 6, 11, 12, 13 and 17

6) CAT Scan:

i) There is extensive adenopathy present. There is adenopathy in the supraclavicular regions, both axilla, mediastinum, retroperioneum and in the pelvis. This is consistence with given diagnosis of lymphoma

ii) Small nodule-like density in the right upper lobe may merely be an area scarring but should be evaluated on follow-up to document stability

iii) Hepatic steatosis

iv) Normal appearance of the spleen

v) Review of bone windows demonstrates no evidence of destructive bone lesion.

The doctor is keeping me on wait and watch and would like to see me in six weeks. He said I am more into SLL than CLL since blood numbers are within normal range.

I am still scared and do not know what are the meanings of all this? and what to expect in the future?. Am I at an advanced stage? how much time do I have? shall I just do nothing and let the Leukemia take its course and surrender to death?

Thanks

[Jm954 Administrator]

I think this report is what you might expect with CLL/SLL.

The only really prognostic part is the fact that you are IGHV Unmutated and that means that you will probably have a shorter watch and wait period although that is not a certainty. CD49d positive means that your lymphs are less easily flushed from the lymph nodes if you are treated with Ibrutinib but I am not aware that it impacts on prognosis.

I would be concerned about your Hepatic steatosis, otherwise known as fatty liver. Please talk to your doctor about how you can address that with diet and exercise.

All the best,

Jackie

[cajunjeff]

Egypt, you have the sll variety of Cll where your Cll cells act more like a lymphoma than a leukemia. With lymphomas, cancer cells settle throughout our lymphatic system and can create swollen nodes. Leukemias are blood cancers. Cll is a hybrid, both a lymphoma and a leukemia.

Survival charts on Cll are mostly all outdated due to proven, game changing new drugs. Even having unmutated Cll is less of an issue with new drugs that can treat all types of Cll equally well.

I think it fair to say that anyone diagnosed to day with Cll has an excellent chance of living a normal lifespan. Some drugs like ibrutinib control Cll much like diabetes drugs can offer long term disease control.

Combinations of the new drugs have had exciting results in clinical trials and it is possible some people will be cured of Cll.

Good luck to you. Everyone on here with Cll remembers the kick in the teeth upon learning of their diagnosis. That shock can stay with you a while. Just know most people achieve some acceptance of their diagnosis and that you have one of the more slow growing, treatable cancers out there and that you can live a normal life for many years, indeed possibly beyond your life expectancy.

The best strategy in watch and wait is to exercise and eat well. Good luck.

[Sushibruno in reply to cajunjeff]

🙂👍

[AussieNeil Partner Founder Admin]

You appear to be in the early stages of CLL/SLL and have good reasons to be optimistic about your future. You have had a very good assessment by your doctor and watch and wait is entirely appropriate.

Take heart that your doctor only wants to see you in 6 weeks. While you do have two unfavourable markers (CD49+ and unmutated IGHV), you have a normal karyotype from your FISH test results and a normal spleen size. It would help to know the prcentage figures for CD49 and IGHV and the size of some of your larger nodes, but with CLL/SLL, these prognostic markers are only statistical guides, with the best indication to how long it will before you need your first treatment being how gradually your condition changes. I would expect your doctor to adjust the time between your appointments as this becomes apparent.

I was diagnosed with worse symptoms than you nearly 12 years ago. I had a normal karyotype and and scattered swollen nodes like you, but a swollen spleen, severe neutropenia and other poor blood counts, including a higher lymphocyte count . I was diagosed at stage 4. My specialist initially saw me every month, but that eventually stretched to 6 monthly appointments. I started my first treatment last December, nearly 11 years after my diagnosis. I found out early last year that I was IGHV mutated, which is why I had such a long watch and wait period. While it is probable that you won't have such a long wait until your first treatment, you really won't know until the tempo of your CLL/SLL is determined by observation. If you do get to the point of needing treatment, there are now very good drugs available that could well give you a normal life expectancy. There are plenty of clinical trials being run around the world, which you can read about from people on them in this community. (I'm in one of them and I'm doing very well). Should you get to the point of needing treatment, your specialist will have evidence of the best treatment for you. Read the relevant posts on what you can do now to improve your quality of life with CLL/SLLhealthunlocked.com/cllsuppo... and get on with your life.

You have posted with the default 'Unlocked' setting, so your post can be found through an Internet search and this could reduce the number of replies you receive. This post explains the difference between the posting options and how to change it: healthunlocked.com/cllsuppo...

Neil

[Sushibruno in reply to AussieNeil]

👍👍👍

[Egypt58 in reply to AussieNeil]

Neil, thanks a lot for your detailed response. I really appreciate the information you provided and the support for my condition. I am 61 with two beautiful daughters ages 18 and 15. Please keep us in your prayer.