Questions for consultant?

[AntonMB]

49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily rising. I am no longer working (As a p/t Teacher) due to fatigue.

Started FCR Chemo due to fatigue (On Cycle 1) . No swollen lymph nodes etc but CT scan showed Spleen enlarged and lesions on Liver. Biopsy revealed CLL progression but was told healthy bone marrow was compensating.

At first appointment (09/16) WBC 30.9, RBC 5.42, Platelets 160, ALC 23.2, ANC 15

Before Cycle 1 (04/18) WBC 52.0, RBC 5.04, Platelets 178, ALC 43.9, ANC 3.5

What should I be asking at next meeting? There is a lot of confusing (To me) talk on the site about mutations, FISH tests, flow c etc

[Cammie]

Anton

Firstly as you are currently on treatment you should forget about the talk in respect of FISH tests or mutations etc as these are normally done either prior to treatment to decide what is the best course of treatment to start or , indeed,after treatments to look at what the current treatments may have done to the blood cells and to check for mutations.

In the UK these tests are not always done and FCR is still the gold standard first line treatment.

Other countries like the US do seem to give more tests and target treatments,which is done in the UK second line in most cases.

You should be concentrating on getting through the FCR AND there is plenty of time to learn about the introcies of treatment after.

[AntonMB in reply to Cammie]

Thanks for replying on this glorious bank holiday weekend.

[AdrianUK in reply to Cammie]

I do agree that now you’ve started treatment it’s about how effectively is the treatment working. If it works for you great. If it doesn’t you will need treatment with something else. The tests are about deciding if it’s smarter to just skip FCR. Honestly, if anyone is being treated by a uk doctor who wants to give them FCR without first testing them for FISH and mutation status they should change doctors. These tests are available and are used by the best centers and NICE has specified that due to the possibility FCR may not work well in 17 deletions it should be skipped and you move to ibrutinib. Any doctor not doing these tests before testament is not following nice or best practice. Also any uk doctor who doesn’t mention the FLAIR trial to a new patient prior to treatment as a possibility is unlikely to be forward thinking. I really feel we need to grasp as a community the need to identify who are the best cll experts and steer people to them. Truth is FCR is still a great treatment for many people. So I’m not knocking it. But I’m astonished at the variable nature of treatment being performed. I suspect it’s local hematologista who are not fully up to date with the latest evidence that are the problem.

[Cllcanada Top Poster CURE Hero in reply to AdrianUK]

The issue that needs addressing is that CLL patients are frequently referred to general oncologists.. some who only see a dozen or so cases to CLL in their entire careers...

Blood cancers, particularly CLL = Hemaetologist

That's the message that needs to go out to GPs etc...

~chris

[AdrianUK in reply to Cllcanada]

I think we need to be seen by true cll specialists. Some haematologists are also far from experts in this disease. And without a special interest cll will always play second fiddle to more aggressive faster growing blood cancers.

[AntonMB in reply to AdrianUK]

I have been happy with my haematologist, my concern over the 2 years of watch and wait was how many times I saw the underlings, who all but dismissed my fatigue as my bloods didn’t suggest I was anemic.

One didn’t even note it in my records of my visit even though I was insistent it was my biggest issue. I put this down to fatigue being unmeasurable.

It was only when I saw the main haematologist that he agreed to start treatment due to the fatigue.

Having looked at the Flair trial, it is not taking place in any of my NHS trust’s hospitals anyway. So I don’t feel I’m missing out, I think I would have taken the local option over traveling for the trial anyway. Touch wood the FCR will be successful, I am feeling quite positive about it.

[Angie4now in reply to AntonMB]

Hi,

I just want to wish you all the best.. I am on WW. I was diagnosed August 2017. Initially I went to my primary doctor due to my fatigue. My CLL ongologist continues to tell my fatigue is not due to my CLL.

Best,

Angie

[AntonMB in reply to Angie4now]

Thanks,

I had numerous other tests via my GP to rule out other causes, but only vitamin D deficiency showed up.

I had to stop work due to the fatigue, I also printed out articles from several sites that mention CLL as a cause of fatigue to discuss with my GP/consultant. I think this helped convince them to start treatment.

[zaax in reply to AntonMB]

DId you get tested for 17p deletion, as per procol? Because if you are, FCR will not work and its straight on to Ibruntinib

[AntonMB in reply to zaax]

I’m going to be checking this at my mid cycle review. It was mentioned prior to treatment I didn’t have certain forms of CLL, but I’m not clear which tests were carried out. This is why I posed my original question, maybe I should have done that prior to treatment but better late than never.

[terryI_uk in reply to AntonMB]

I think the trial is based in Leeds having been on it during 2015 to February this year, hope your FCR is a success and you achieve a good remission, God bless, Terry

[JigFettler Volunteer in reply to Cllcanada]

I agree. Indeed always get a 2nd opinion pre treatment from a super specialist. These Docs are easy to locate. Every country has many. Google search!

[Jm954 Administrator in reply to AdrianUK]

AdrianUK Not every patient wants lots of tests and invasive investigations. Some, perhaps elderly or frail, just want to be comfortable and have very few or no side effects. For them quality, not quantity of life is most important.

FLAIR is not an option for every patient and we have to be careful about promoting it without caveat as this can cause confusion and a lack of confidence by some patients in their Drs.

FLAIR is also a very UK centrist option/view point and this is a world wide support group so, again, not an option for most of the people on HU.

[AdrianUK in reply to Jm954]

This was a question from a uk person. My point is not that flair is for everyone. Rather that a site in the uk which isn’t running it is almost certainly not a specialist site. And certainly not a forward looking one. For non 17p deletions it’s the only way not to get offered FCR first line if you are healthy in the uk.

Also the FISH test for deletions and the mutation status tests are all done on blood.

[Jm954 Administrator in reply to AdrianUK]

Your statement as follows: “Also any uk doctor who doesn’t mention the FLAIR trial to a new patient prior to treatment as a possibility is unlikely to be forward thinking.” misled me and seemed to be aimed at everyone.

I’m aware the FISH tests are done on blood but not everyone wants a bone marrow or a CT scan.

[AntonMB in reply to Jm954]

I did have the bone marrow biopsy and contrast CT Scan prior to treatment. The consultant did mention there was no evidence of aggressive strains of CLL, could that have been from those tests?

[AdrianUK in reply to AntonMB]

Yes. Perhaps you did have the tests. You could ask them at the next meeting if you want. Basically do you have any deletions and are you mutated or not.

[MsLockYourPosts Passed Volunteer in reply to AntonMB]

A flow Cytometry test is used to specifically diagnose CLL. The FISH test would show aggressive strains of CLL. Both can be done with blood now, but when I was diagnosed (15 years ago) they were routinely done as part of a bone marrow biopsy (BMB) and still can be done that way or if lymph nodes are an issue, as part of a lymph node biopsy. I'm guessing both are included in your BMB results. If no aggressive strains of CLL were shown, FCR would be the treatment of choice for some patients, even in the US where there are other options.

It is important to have the FISH test redone before additional treatment discussions as the deletions it shows can change.

[AdrianUK in reply to Jm954]

Yeh fair point. My comment was a bit all inclusive.

[zaax in reply to AdrianUK]

I was told FCR (by my Hemotoligist) does not work for 17p deletion and NICE protocol is straight to Ibrutinib as first line

[AdrianUK in reply to zaax]

That’s quite right. Cll experts don’t give FCR to people with 17pndelrtioj. People who don’t have 17p deletion are still generally offered FCR first line in the UK. FLAIR trial is a chance to get a different first line optIon for those who would otherwise only be offered FCR.

[Cammie in reply to AdrianUK]

Adrian

You may indeed be correct about the tests being available my last treatment was three years ago and certainly at my specialist Leaukemia centre the tests were not available then.

If the NICE regulations have changed since then please point me in the right direction as I am sure in the future if I relapse I will insist on the tests being done anyway just in case FCR has caused mutations.

In any case as we both agree in Antons case as he is being treated it’s a bit late to be concerned about the tests at the moment.

My heamotologists are pretty switched on and at a specialist Leaukemia centre. They were trained by speacilists in Cll including Chris Fagen and Peter Hillman so I am sure they will be up to date on any new regulations.

As someone who takes responsibility for their treatment choices you can rest assure I will keep on top of things.

[AdrianUK in reply to Cammie]

The testing is mainly relevant before the first treatment. But you are right it’s a good idea to test later. For links to the latest nice guidelines for first line treatment see my previous post healthunlocked.com/cllsuppo...

[MsLockYourPosts Passed Volunteer in reply to AdrianUK]

FISH testing is important before every treatment if available. Deletions can change and it's important to know if they have.

[zaax in reply to Cammie]

Yes they have changed because of Ibrutinib

nice.org.uk/guidance/ta429/...

[Oleboyredw-uk in reply to AdrianUK]

The above post mentions “17 deletions” and the lack of effectiveness of FCR. If you are reading this and new to CLL terminology please be aware that this is not 17 things being deleted. It is 17P deletions, you will also hear the term TP53, this is effectively the same thing.

This can be identified by FISH testing and is normal to be checked for in pre-treatment testing.

best, rob

[AntonMB]

Any thoughts on my numbers also welcome.

[Cllcanada Top Poster CURE Hero in reply to AntonMB]

Your absolute neutrophil count [ANC] is it 1.5 doesn't look right... FCR is an accumlative treatment and usually around round 4 counts come into normal range...

How's the fatigue? After FR for 6 rounds I felt 20 years younger, my mind numbing fatigue of 14 years lifted and it has ever returned... Fatigue in CLL is actually a sick response... we interpret it as fatigue, but it is actually different...

~chris

[AntonMB in reply to Cllcanada]

The numbers are from my spreadsheet ANC was 15.2 and has dropped to 3.5. (They were 15.2% and had dropped to 6.7%, from the hospital print outs)

I have only had 1 cycle which started on the 27th of April and my WBC halved over that weekend, between the split doses of Rituximab. I know its early days and I may be imaginining it but I feel less fatigued already.

[MsLockYourPosts Passed Volunteer]

Ignore the percents. The important numbers are the absolute lymphocyte count (ALC or lymph #) the absolute neutrophil count (ANC), hemoglobin (HGB) and platelets. Your doctor will also keep an eye on the others as well. If absolutes are not given multiply the WBC x the ALC or ANC percent (or convert the percent to a decimal - e.g. 6.7% or .067)

The fact that your first dose of rituxan was split is good. Much fewer reactions when done that way usually.

[MsLockYourPosts Passed Volunteer]

Take a look at clltopics.org The site I'd no longer active, and much of the information is now dated, but the post Three Important Blood Tests gives a good explanation of the basic testing done

[Ohannie236]

Wishing you best of luck with your FCR treatments, Anton. I start round two next week. Hope your fatigue lifts soon. Prayers and hope from Ohio.

[AntonMB in reply to Ohannie236]

Thanks, I have just over 2 weeks until round 2, but already feel more alert. All the best for your treatment too from God’s own County, Yorkshire.

[Ohannie236 in reply to AntonMB]

Thank you!