Latest test results , done in Dec

[Stavrou1]

Hi All

Hope your keeping well , and doing well .

These were my latest results , is there anything I should be concerned about , am a worrier. Was diagnoised in Sept . Am on watch and wait .

Tina

[HopeME]

Absolute values aren’t as important as changes between values. Trends are important. Do you have an opportunity to discuss your results with your doctor or nurse practitioner? It’s a good idea to review results with your medical professionals and get their input. Nothing looks immediately concerning for someone recently diagnosed. Keep an eye on HB as a value below 10 can be a trigger for treatment but I’d relax. Things generally unfold slowly with this disease. How often do you have bloods tested?

[Stavrou1 in reply to HopeME]

Thank you for your reply and for the advice . . Have b/test every 3 months . Next ones in March . Have only seen specialist once , when dfirst diagnosed in Sept . App over video link due to covid and discuss any issues or any changes I notice . 😊

[HopeME in reply to Stavrou1]

You are heading in the right direction as compared to how I started out. Why do I say this? 1) you found this community early after diagnosis and 2) you are being seen by a specialist. Keep educating yourself and be prepared to ask questions in March at your next appointment. Remember you only see your specialist infrequently so be prepared to use your time productively.

Have they tested you to determine if you are mutated or unmutated? In the US you can get this test. In some countries such as Australia or in the UK you can’t easily receive the test. This information is good to know upfront in my opinion. However, some hospitals in the US only test when treatment is needed. This was the case at Mass General where I was diagnosed. Other teaching hospitals like Dana Farber test upon diagnosis. There are arguments on both sides about when this test should be conducted. In my case I didn’t find out I was unmutated until my blood levels started to quickly move outside of range. I was then rushed into a treatment that was less than ideal by someone who wasn’t an expert. Try and find an expert you trust. The time to develop a relationship with a CLL Specialist is when you are in watch and wait. Ask he/she what type of treatments they think might be considered for you if/when needed. Ask about clinical trials. Educate yourself. You need to be your own advocate.

Best

Mark

[Stavrou1 in reply to HopeME]

Thank you Mark , I am not sure , if have been tested to see if iam mutated or not ! . Is that tested by blood test ? . I have noted this down to ask in March and other things you have mentioned .

They say i am long way to needing treatment . I did ask , IF i needed treatment , would be a tablet and discuss options than .

I live in the UK, have updated my profile.

[HopeME in reply to Stavrou1]

Hello: Thanks for your location clarification. Bennie below clarified when the genetic testing occurs in the UK. It sounds like it is closer to treatment time which is the way it happens at some hospitals in the US. I’d ask your specialist when he/she thinks it might be available to you. It is a blood test. The 3-month appointment interval is fairly standard in the US, too. You are on the right track. Hopefully, you have a long initial W&W period. Lots is happening on the treatment front so the longer the W&W period the better!

Stay well!!

[Stavrou1 in reply to HopeME]

Thank you for your for clarification. Everyone has been great replying . So more at ease joining . Were all in too together and different stages . 😊

[HopeME in reply to Stavrou1]

I have made an assumption that you are in the US but after looking at you profile I see that this might not be the case. Can you fill out your country on your profile? It is helpful information.

Thank you

[Stavrou1 in reply to HopeME]

Am UK . Have now updated my profile, thanks for that . 😊

[bennevisplace in reply to Stavrou1]

No immediate cause for concern. From diagnosis a 3-monthly blood test is to be expected for UK patients. Once your specialist has a handle on how your cell counts are changing over time, he/ she may keep it at 3 monthly or lengthen monitoring to 6 or even 12 months. The "doubling time" of the absolute lymphocyte count (ALC), which varies a lot from one patient to another, will give the doc a good idea of how fast or slowly your CLL is progressing. As HopeME says, rate of change is more significant than the absolute values on a given date. Many CLL patients stay on watch-and-wait for quite a few years - far too long to be worrying all that time!

In the UK, genetic tests on CLL cells are not usually done at an early stage but only once your doc has decided that treatment is imminent. This will be based on clinical judgement and other cell counts more than the ALC itself. Some people have a relatively stable ALC measured in the hundreds and are not yet ripe for treatment.

[Stavrou1 in reply to bennevisplace]

Thank you for your reply . Really helpful . Learning from them from every one . 😊

[SofiaDeo in reply to Stavrou1]

I don't know anything about the health system in the UK, esp with Covid stresses, and of course I don't know your personal situation. When I was diagnosed, my labs looked "bad" and the cells on a smear prompted a discussion with the hem-onc, who said based on what the slide & labs showed, he thought I would likely have an aggressive disease (labs 6 months earlier during a tooth infection showed only slight WBC elevation, now in late Dec they were over 50K). I paid out of pocket for FISH, flow cytometry(hip BMB), PET scan, a few other things. I didn't want to wait the 3 months required by my insurance to do FISH/flow cytometry. Those were under $500 if I remember correctly, but it was a decade ago. If you are really anxious, getting a FISH will at least let you know if you have a milder vs. more likely to need treatment sooner variant. And a good FISH will also state the percent of cells with any deletions, and if they are both alleles or just one. In my case, a high percentage of both alleles had multiple genetic abnormalities which pointed to an extremely aggressive variant. Even a 17p del, if only on one allele & a low percentage, could means years before treatment needed. So if you are really concerned & can afford it, doing that testing if you can may give you some peace of mind.

[Newdawn Administrator in reply to SofiaDeo]

Doesn’t work like that in the U.K. SofiaDeo. It’s unusual for the NHS to offer FISH or hyper mutational testing until treatment is due (some specialist hospitals do). It took 7 yrs for them to do cytogenetic testing on me and then it was only a single probe to ascertain I wasn’t TP53/17p for a trial. It’s unusual for Brits to have private insurance and this testing could be massively expensive to have undertaken and interpreted here independently.

The system is very different here.

Newdawn

[Stavrou1 in reply to SofiaDeo]

Hi Sofia thank you for that . Very helpful , it's all new to me and a lot take in . Will ask more questions on my next app . Take care

[Big_Dee in reply to Stavrou1]

Hello Stavrou1

I had FISH and IGHV testing at my first meeting with H/O doctor in USA. I found out that I was 13q deleted and un-mutated which was nice to know but does not do anything to affect my CLL, strictly info to determine possible treatment way down the road. Blessings.

[Hidden]

We're all worriers, Tina. I put mine under the rug so I can walk all over them.

[Stavrou1 in reply to Hidden]

Thank you , will try to do the same 😀