Do I need a Specialist

[PurplePotato69]

I was diagnosed w/ CLL in 2008. My Hematologist/Oncologist says I'm in the W&W stage. I am 77.y y.o. I exercise 10 hrs/per wk, am vegan, WBC 12.0 (4.6-10.2), Lymph# 6.55 (1-6), Lymph% 54.5(18-42), HGB 14(14-18).

Do I need a CLL specialist?

thank you

[AussieNeil Administrator]

Hi PurplePotato69,

As I gather you appreciate, the general advice is that seeing a specialist is advantageous. A couple of studies have found that this can potentially add years to our life expectancy. That's primarily because CLL specialists keep up with the latest developments, particularly in treatments and clinical trial opportunities, which a local oncologist just wouldn't have time to do given the relative rarity of CLL, when their primary management is of solid tumour cases. CLL specialists also gain experience from observing hundreds of CLL patients, so they are more likely to know which management approach to some of the less common CLL related health issues has the best chance of success.

I note that you have had a long watch and wait period of 15 years and your blood counts are good (assuming your platelets are also good). While it's possible you may never need treatment, you haven't mentioned how your spleen and node sizes are faring. CLL also impacts on your immune system, which you also haven't mentioned.

I'm not medically trained, so I can't tell you if you need a CLL specialist, but I hope the above provides you with some considerations into making your decision.

Neil

[PurplePotato69 in reply to AussieNeil]

thank you

[Edalv]

You seam to be doing fairly well without one, but I still would get a CLL specialist. The problem is that you don’t know what you don’t know. The specialist would check for things that a regular doctor might not. Probably you might never need treatment, but a specialist would provide peace of mind and reassurance if that’s the case… Best of luck and keep doing what you are doing, it seams to be working for you… 🙏

[PurplePotato69 in reply to Edalv]

thank you

[bkoffman CLL CURE Hero]

The short answer is yes. Proven 2-3 year survival advantage in getting care from a CLL expert. We have a list on our nonprofit's website: CLLSociety.org. That said with a 15 year history of not needing treatment, at 77 years old with your healthy lifestyle and indolent flavor of CLL, you may never need treatment. Kind regards from a fellow vegan since 2005 (though I do now eat some wild caught fish).

[PurplePotato69 in reply to bkoffman]

thank you

[CoachVera55]

Your labs make you sound like an expert, GOD BLESS. I am 57 & now stage 4 after 13.5yrs of W&W, also Vegan, Exercise Daily but my bloodwork is out of whack. Still pursuing Natural Remedies tho... Death is inevitable but its the suffering that I want to avoid...

[PurplePotato69]

My best wishes to you and your treatment. I recently added daily green tea Macha to my diet. I take 1/3 tspn q.d. & sip throughout the day to avoid putting my heart into bigemminy (caffeine).

[Big_Dee]

Hello PurplePotato69

I can only relay my experience as I have very aggressive CLL and was not on W&W very long. It may not sound like you need a CLL Specialist. I have a GP, Hematologist/Oncologist and a CLL Specialist. I sought out a CLL Specialist 6 months after being advised to do so on this forum. You will need a GP and Hematologist/Oncologist who understand CLL to determine any issues you may have or may not have due to CLL. The CLL Specialist comes into play as you approach CLL treatment. My Hematologist/Oncologist who oversees my CLL treatment consults with my CLL Specialist as back up and has saved my bacon a few times. I have standing 6-month appointments with my CLL Specialist who tracks my progress with blood tests.

[PurplePotato69 in reply to Big_Dee]

thanks

[Biker7]

From my husband's experience, I recommend seeing a CLL specialist, just to have a specialist contact available should you ever need treatment.

CLL specialists are involved in CLL research and are therefore up-to-date with the latest treatments. Their advice may differ from what non-CLL specialist haematogists recommend.

Having a CLL specialist contact ready is a sensible precaution. It's no different to looking after our own health by opening a door or window when a room gets a little hot and stuffy, or having a packet of band-aids ready in case you accidentally prick your finger.

PS Our neighbour's father lived in Watch and Wait until the ripe old age of 95!

[PurplePotato69]

thanks