To continue or not....that is the question

[Dawson21]

I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which would last for 2 years. I encountered very few side effects to this regime, experiencing the "normal" joint pains and skin issues. At this point I have finished the 6 months of Rituximab and am now just on the Venetoclax (400mg daily) along with Acyclovir and Co-trimoxazole. I have a scan coming up to check my lymph nodes and that a CLL mass in my back has finally disappeared. Latest blood results show HG at 130, AWC 2.2 (down from 66), ALC 0.9 (down from 59), Platelets 160, ANC 1.0 (previously in the 3-4 range). The consultants are happy with the results and direction.

The question is now arising, continue for year 2 or stop after the initial 12 months. Funding is not an issue; the drugs are assigned to me in any event. I think the rationale is that my first treatment would have been 12 months, good results achieved and that stopping after a year would leave more scope to use R&V as a second line treatment in the future. The consultant did feel that stopping would probably mean a shorter period of remission.

So I'm not sure. Pros and cons? Any advice?

[Phil4-13]

I am still in W&W so don't have an answer for you, but know with this group, you'll get some soon. Best results wished for you. 🙂Sandra

[lankisterguy Volunteer]

Hi Dawson21,

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These two recent postings may have useful information, they are long reads but I think there are pearls of wisdom in some of the replies.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Len

[Dawson21 in reply to lankisterguy]

Appreciated - I'll start reading now

[Palmetto]

Have you had testing to determine residual disease status? Or bone marrow biopsy with flow cytometry? Husband didn't even stay on Ven at full dose for more than 2 months and had to cut back to 100 mg. due to severe neutropenia so only had a total of about 6 months. He only had 4 Gazyva treatments and less than 6 months total of Venetoclax but he had reached undetected minimum residual disease but he has had an unusual CLL course with no high white counts or extremely enlarged lymph nodes unmutated with 13q deletion. He had last Veneclexta in October and in November had bone marrow biopsy that showed negative for CLL and even a PET scan with no findings. So it is up to you and your doctors to determine. He is currently on no treatment with twice monthly labs and 3 month doctor followups. Good luck.

[Dawson21 in reply to Palmetto]

I haven't had any testing for mrd and will ask about this during my next review. I do have a scan booked so that's a first step. How is mrd testing completed? It didn't seem automatic process when I last raised the question.

[lankisterguy Volunteer in reply to Dawson21]

Hi Dawson21,

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The MRD test is usually done on blood, similar to your other blood tests, but the MRD test can be expensive, so the NHS might have some resistance to using it.

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So far the results show that getting to zero - aka MRD-U (Undetectable or Unmeasurable) is a good predictor of a longer time in remission (PFS- Progression Free Survival).

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Some doctors are suggesting that an MRD test could be used as a way to decide if stopping Venetoclax combination treatment at 12 months, 18 months or 24 months is the best for a specific patient. There are some that want to test this in clinical trials to show if continuing treatment to achieve MRD-U is better for the patient than the current practice of stopping at 12 months for first time treatment and at 24 months for previously treated patients.

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If you want links to very detailed technical discussions, you can find some here:

healthunlocked.com/cllsuppo...

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Len

[Dawson21 in reply to lankisterguy]

Thanks this might explain the lukewarm response when I asked about it. I will do so again as avoiding the cost of 12 months venetoclax must be much cheaper.

[lankisterguy Volunteer in reply to Dawson21]

You are probably correct, but this is not economic logic, it is bureaucrats following established policies (perhaps penny wise and pound foolish). And from what I hear, the NHS HQ is not known for trying out forward looking uses of novel techniques without tons of proof. -

Some of our USA insurance companies are just as hide bound as your NHS.

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Len

[stevesmith1964]

HiI had Obinatuzamab at diagnosis 14 months ago with Ibrutinib. I am now on acalabrutinib and in remission, I will remain on acalabrutinib until it stops working and then move to another solution. There is no question from my medical team that I will ever stop treatment. I am 58 with no comorbidities.

[kitchengardener2]

Well I spent ages typing a reply and then it just disappeared!Others with more experience will answer your questions better than I can but as a comparison this may interest you.

I started treatment with Acalabrutinib, Aciclovir and Co Trimoxazole in August 2021 after almost 3 years watch and wait. I have been great on this with white cell count down from 250 to 17 and HG 116. I haven't been aware of side effects except for the bad backache which I now think I can put down to the medication. I was advised to take paracetamol 4 times each day, which I have tried to cut back to twice and I was given some back exercises. I also have Volterol rub. I am going to have to up the painkillers because I can't live with this debilitating pain, I am usually very active. I am not due to see my consultant until May but will mention the back pain then. I have had a CT scan and all was well.

[Dawson21 in reply to kitchengardener2]

Thanks for this and so sorry that you wasted so much time on a vanishing response. I suffer from these back pains too with a pain killer prescribed, which I don't take I must confess.