Hi All
I have seen my Consultant today and she said it is time to start thinking about treatment.
Not what I wanted to hear but after 14 years W&W I guessed it would come one day.
She will arrange a CT Scan to check on Tumour burden (I think thats right) then just waiting on this.
TP53 - deletion - mutated or normal
and
IgHV - mutated or un mutated
My question is does not having Cll for 14 years give some idea to wether there are any deletions or being mutated or not.
Jules The Flyer
Best of luck to you Jules🤞
TheFlyer, I was tested for that at my time of diagnosis, but my understanding is things can change. I'm in W&W 4 years. So it is usually done at time of treatment. That makes sense to me. 🙂 Sandra
I don't have an answer to your question but if you do need treatment don't sweat it. I was diagnosed at 57 yrs old in Aug. 2016 with CLL and was on watch & wait for 7 years. After reading about all the treatment successes, once my WBC doubled within 6 months, I was ready for treatment. My markers are; CD38, ZAP70, FISH negative and unmutated. We decided Zanabrutinib/Brukinsa was the best path for me. Below are my Labs before and after treatment with Brukinsa.
7/26/2016; WBC: 13.6 / HGB: 14.6 / Platelets: 232 / ALC: 7.9
11/8/2017; WBC: 17 / HGB: 14.6 / Platelets: 232 / ALC: 7.9
11/3/2022; WBC: 105.4 / HGB: 13.2 / Platelets: 208 / ALC: 86.43
5/11/23; WBC: 201.8 / HGB: 12.9 / Platelets: 199 / ALC: 185.66
5/19/2023; Begin Brukinsa
6/13/23; WBC: 158.5 / HGB: 12.5 / Platelets: 193 / ALC: 153.75
9/12/23; WBC: 50.10 / HGB: 14.7 / Platelets: 273 / ALC: 42.08
11/3/23; WBC: 23.9 / HGB: 14.8 / Platelets: 273 / ALC: 18.88
12/15/23; WBC: 18.1 / HGB: 14.8 / Platelets: 295 / ALC: 10.86
I have had zero side effects to date while on treatment. Within the first two weeks of starting on Brukinsa, I noticed Lymp nodes decreasing tremendously. Prior to treatment, my urine stream was weak, and after just 10 days of treatment it was back to normal. I have had no side effects and my Dr's at MD Anderson said most people do not have any side affects so you will probably be the same. Brukinsa is a very effective treatment for CLL. I take 4 capsules (4x80mg) once daily, every morning with my breakfast. You should do fine.
Hi Jules,
Having known you most of your CLL journey I had to reply as you look toward your first treatment after 14 yrs. Although it’s impossible to be certain, you’re right in suspecting that this very extended time to first treatment is a good sign and bodes well for favourable prognostics. It will help that you’re keeping yourself fit too. In any case, the newer treatments deal with whatever is thrown at them now but 14 yrs is a very long untreated period and you have reason to be optimistic.
Writing this from a sunny balcony in Spain. Home tomorrow and sending best wishes to you for the days and months ahead 😊
Newdawn
Hi Newdawn indeed you have and a lecture or too from time to time, when I needed to be told.
I had a knee op January 24 fell over while on Holiday. and I thought this may have affected my Bloods anyway once I get the results of the TP53 and IgHV I will no for sure...............Im just looking to find positives and not be to scared of starting treatment.
I have a chest infection from a really nasty cough which has got me down a bit and I am still working on knee flexion after the ruptured Quad tendon just hoping to get back Gardening soon thats if it ever stop raining.
Safe journey home and Thank you.
Julian
Newdawn meant to say the Consultant says the best option for me would be Obinutuzumab infusion and Venetoclax.
Hello Flyer, I assume the question you are asking is does the fact that you were in watch and wait for 14 years provide a clue as to what your TP-53 and IGHV mutation testing will reveal.
I can take a lay person’s guess at the answer. While I think it is certainly possible someone with mutated TP-53 and unmutated ighv Cll could go for 15 years or more without needing treatment, I would think that as a general rule, people without TP-53 mutated and unmutated igvh cll will stay in watch and wait longer than those who do not.
So yes, I think you being in watch and wait for so long would make it more likely your have the more favorable, IGHV mutated, cll. I would have no idea how much more likely. And while your IGHV mutation status is unlikely to change at all over time, TP-53 mutations can be acquired, so the testing will tell. Good luck to you, I remember sweating out the results of my mutation testing. While I did have mutated ighv cll, I nevertheless had a very short time in watch and wait. So I wouldn’t think a long or short watch and wait guarantees any result, either way. But I think it still fair to say a long watch and wait correlates more with indolent markers and a short watch and wait correlates with unmutated cll, with lots of exceptions though.
With the long W&W time you are unlikely to be IgHV unmutated with TP53/17p aberrations.
IgHV unmutated without TP53/17p aberrations is a slight possibility, the CLL would have had to been detected at a very low level.
The most likely for slow progression is IgHV mutated with or without TP53/17p aberrations.
Have to say I'm surprised they are testing IgHV as in England/Wales a mutated IgHV result reduces the treatment options to V+O, V+I and chemo, unless they already know you are unsuitable (TP53/17p aberrations, over 65 or unfit) for FCR chemo. Then they don't need to know as it won't affect the treatments they can offer. My IgHV wasn't tested, they told me it was expensive (more like best not to know).
18 months ago (Nov '22), with immediate need for treatment, I was offered V+O or Acalabrutinib. The instant I selected V+O I became suitable for chemo and CDF funding was needed (but if suitable for FCR I shouldn't have been offered Acala). In the last year Zanubrutinib continuous maintenance treatment has been added to the RHS alongside Acalabrutinib/Ibrutinib and 15 cycles I+V added across the board.
Yes treatment comes to many of us eventually..
In my case it took 18 years.
IgHV mutated and was the long time on watch and wait due to all the cycling exercise and hill walking.???
Now feeling fine on Acalabrutinib, with minimal to zero side effects.
Just some pills to take seemed to me to be an easy solution.
Still cycling whenever possible, but this spring has been notable for rain and a lack of sunshine.. ☹️
When I was first diagnosed it was noticed that my bloods were stable in the Swiss summers but would rise in winter..
We guessed that this was due to all the mountain hiking that I did in summer, so started going to the gym in winter.
This helped, but the gym exercises were never as taxing as a long day hiking up and down Swiss mountains.
Presently I use an indoor cycle trainer in winter which helps, and then do HiiT exercises on my bicycle whenever the outside weather allows.
Cycling is very much easier of course on the knees, and I doubt now that I could walk down some Swiss mountains, since coming down is much harder on the knees than climbing up.
In my part of the UK, Acalabrutinib and probably Zanubrutinib is often chosen by the consultants as V & O are now only done with a hospital stay due to the dangers of tumor lysis syndrome.
Hi
These were mentioned as an option Acalabrutinib and Zanubrutinib but said V&O was her recommendation saying 50% of people were in remission after 6 years.
do you know of any figures on these Acalabrutinib and Zanubrutinib ?
Im frustrated because I cant do alot because of myknee at the moment.
Jules
I don't personally have any statistics on Acalabrutinib and Zanubrutinib apart from reading that they can cause heart problems for a minority of patients.
I was happy to go on Acalabrutinib, since if that fails, then there remains, Pirtobrutinib, the new BTK degraders or still V & O. Also during my 18 years of watch and wait there have been massive developments in treatments for CLL, so who knows what new drugs are possible.?
In the USA one reads of patients who, "Just want a cure" or a "30 year remission", and thus they opt for V & O looking for minimal residual disease.
In my opinion, as things stand, searching for " a cure" or "decades long remission" is not worthwhile if I can take a pill each day and just carry on with my normal life.
As regards exercise; when I was immobile due to an infected tick bite, collected when cycling in the New Forest, I purchased a £ 70.00 set of weights. This enabled some exercise, and can certainly raise the heart rate, which basically is what I was trying to do.
I hope the knee problem improves, I do know how frustrating it can be when one loses full mobility.
Dick
Starting Treatment
About to start FCR 
Is it safe for me if my wife has the live shingles vaccine?
ibrutinib it is expensive?
