MBL is now CLL

[Billy_Oz]

Hi all,

My MBL has progressed to CLL stage 1 after 8 years which I am struggling to come to terms with.

I am now 51. Small glands in neck and groin and possibly a slightly enlarged spleen my lymphocytes were around 12-14 For couple of years but shot up to 24 recently. I am getting scams in 3 months.

I was also told by the professor at the Alfred in Melbourne MBL always becomes CLL. I had been in denial a bit it would Never become CLL. Never listen to a GP.

Ok, it’s real. I was hearing stuff like FCR for 4 rounds further down the track. 2 month blood tests to establish a trend. 90% chance I would still be working in 10 years. He mentioned once lymphocytes start duplicating they go up quick ? So much to take in.

How have you old timers (that is being respectful, I salute you) dealt with years of W&W, treatments, tests etc

I look forward to hearing about your mindsets.

Also I was so sick after the AV vax 2 weeks before test. Is this common ?

Any advice appreciated

Take care

Travis

[Phil4-13]

Billy_Oz, I’m 72 and in W&W FOR 3 years. My WBC count at 73,000, up from 54,000 a year ago. This group has taught me to look at the “whole picture”, not only the WBC count. I feel fine and know the fantastic research that is ongoing on our behalf. You will receive much info here that is the latest in treatments. Much GOOD STUFF! I’m too old(according to those who be) to receive some of the treatments, but there are many more available. Eat healthy, avoid chances of catching someone else’s cold, flu or virus and fill each day with positive thoughts. I’m happy you have contacted this group.

Sandra🙂

[cajunjeff]

Travis, my understanding is that while all Cll is likely preceded by mbl, not all mbl evolves into Cll. I think I read it evolve at 1 to 2 percent a year. All that is of no matter to you I suppose at this point, you have Cll now.

No one on here can possibly predict the course of your Cll with the limited info you have provided. With all of the advances in treating Cll, it can be for many of us much like diabetes or some other type disease that can be managed indefinitely while we lead normal lives and normal life expectancies. You might be in watch and wait forever, for many years, or for only a few.

How do I deal with my Cll? It’s pretty much one day at a time for me. I take an oral Cll drug daily which has no side effects for me. I work full time. I exercise, play golf, drink beer, cook a lot, travel (less with covid), drink beer and spend time with my family a lot. Did I say drink beer twice? Sorry. That should have been wine too.

Here is a post I did on info for newly diagnosed Cll which might be helpful to you:

healthunlocked.com/cllsuppo...

[Billy_Oz in reply to cajunjeff]

Thank you, I was told the same about MBL. It was in my initial results many years ago about the 1-2.%. There must be some debate about this. His words to my wife and I were MBL is cancer. They just don’t want to use the world cancer. It is what it is now. pointing the finger will not change the fact I have CLL. Thank you for your response, very helpful.

[AussieNeil Partner Administrator in reply to Billy_Oz]

MBL has been studied fairly well and high and low count versions are recognised, with the high count version progressing to CLL at a rate of 1 to 2% per year. It's a possible precursor to cancer and the incidence increases with age., with it becoming quite common in 80+ year olds.

There are different growth (and sometimes levelling out decline) patterns for the lymphocyte count.

Who knows what treatments will be around if you get to the point of needing treatment. I lasted nearly 11 years in stage 4.

Neil

[Billy_Oz in reply to AussieNeil]

11 years at Stage 4 ? Neil, incredible. I am trying to process that.

[baq724]

I’m 50 and was diagnosed in 2016 (MBL started in 2012. My ALC is around 28-30. White count at 35. (6 month appt is in a couple weeks). All other counts normal. I’m a slow mover. You might see your numbers plateau and level out a bit. My specialist at MD Anderson told me I may never need treatment, but since I’m young, there is a slight possibility.

The good thing is that now they can do additional tests to see if you’re mutated and see which side of the spectrum you are as far as other abnormalities (13q, 11q, 17p, etc). This will help make the “whole picture” more clear for your docs. There are a lot of good therapies out there and more coming.

Take care of yourself, keep up with screenings for other cancers (skin, colon, etc) and this shouldn’t affect your life expectancy. There maybe some bumps in the road, but with the new treatments out there, CLL isn’t the death sentence it used to be.

[Billy_Oz in reply to baq724]

Thank you baq. I think he was trying to get me to accept I had CLL. All my other counts are also normal. All organs ok. I was a slow mover and it sort of woke up the last year. He said that happens, then it goes down. I live near the beach and will slip slop slap this summer. Great tip.

[PaulaS Volunteer]

Hi Billy, like you, I did not feel good after the AZ vax. Fevers nausea and aching for about a week. Could it be that as your blood test was done just 2 weeks after your vax, you were getting a temporary increase in lymphocytes in response to the jab, and this will calm down later?

I realise you have other symptoms of CLL though, like enlarged glands and spleen, so a reaction to the vaccine will only be part of the picture..

Paula

[Billy_Oz in reply to PaulaS]

Hi Paula, I had all the symptoms you had. My wife zero issues.

I did speak to a lymphoma nurse who compared CLL to diabetes. It is normally asleep but sometimes it wakes up. Then it may go back to sleep again.

I also thought the vax may have woken it up !