Fingers Crossed

[Estate1]

Saw my Hema/Onc today and she says if my CT scan shows my lymphs have reduced she will discontinue my BR sessions. (3 left). I’m not tolerating the treatments well and Dr is concerned. My blood work is good except my WBC is very low. She was still waiting for Neutrophil count to confirm shots going forward to get wbc production up. (I think I heard that right) So, if CT scan looks good tommorro she will discontinue BR. If in the future I require more treatment, I would then qualify for the second line treatment Ibrutinib. I’m pretty happy today.

[Shedman]

Each of our journeys is specific to the individual.. Comparison can be a comfort and guide our sense of what may be involved.

My treatment and your BR journey have been almost simultaneous, with me just finishing 4th round this week.

I have been lucky - I'm not enjoying the treatment with all it's muddle-headed 'chemo brain' / 'brain fog', but my blood counts have largely remained good.

Sorry for your struggle with BR - it must be unsettling and somewhat frustrating or disappointing that it has not worked as it might.

We have, mostly, to take our haematologist' advice.

Today I saw my consultant for first time in about 4 months. She was pleased with my progress, but noted that longer remission is more likely with 6x BR cycles.. This being the first consult during a treatment week, my head all muddled I was not much up for smiling or outwardly feeling grateful; treatment is not really a walk in the park.

Hope your WBC improves and next steps are positive soon.

Above all, that you are soon feeling okay.

[Estate1 in reply to Shedman]

Interesting about the 6x protocol. I asked specifically if my remission and indeed my longevity would be affected if treatment was cut short. Drs’ answer was an unequivocal no. I hope she’s right. Good luck with your treatment Shedman, wishing you all the best!

[Shedman in reply to Estate1]

Yes, I did ponder not saying anything, but honesty is best.

I'd have been happy if my consultant had indicated this could stop.. Not that it has gone badly, but, well we all know it is unpleasant in some ways, risks harms.

I think your consultant likely chose words carefully; I mean, outcomes are all statistics -- no knowing whether ones own response will fit with the statistics, and, besides: if the treatment is not working out safely, then we need a plan b.

So, statistically, maybe, 6x BR cycles is perhaps going to get a more complete (lower residual disease) bone marrow clearance.. But it could risk greater damage too..

We can only do the treatments that our bodies tolerate. At 48, in spite of kidney trouble caused by CLL, I'm glad that this treatment seems to have been tolerated by my body, so far.

Best of luck to you with next steps and seeing blood numbers get more healthy for you. - I hope you get a good remission too.

[Estate1 in reply to Shedman]

I should add that I’m 68 and as I understand I’m on the over 70 dose. I gather the older one is, less tolerance to chemo can be an issue. As you said each individual is unique in this science.

My blood work is great except for WBC and Neutrophils. (I’ve just taken a call from Dr confirming Neuts are too low now), they have ordered my shots to improve that issue. I will start those tomorrow. (X3 days)

CT scan in the AM and hopefully it will be a wrap early next week. CBC has been ordered for the 9th.

[Big_Dee in reply to Estate1]

Good morning Estate1

I too had great results after first cycle of B+R treatments and thought I would be advised to stop treatment. I had a few side effects, but not life threating or that uncomfortable. Here I am on day 2 of my last 6th cycle today. I have learned how to deal with most of my side effects so not concerned. I have been given nuelasta shots to build my neutrophils up, that and hemoglobin are still below normal. I too was worried about possible damage from going to 6 cycles, but for the most part, glad I stayed in there. Blessings to you and hope for a good future for you.

[Estate1 in reply to Big_Dee]

Dee I’m happy to hear your at the end of treatment. Wishing you all the best in remission. May it be very long lasting!

[Jem67]

Hi Estate1. Your question has coincided with me pondering this matter because of what has happened to me after completing round 4 of BR.

I have had round 5 delayed twice because neutrophils too low but after injections last week, had day 1 of treatment yesterday. However, that was touch and go because not a slot for me.

It was all very stressful and made me think do I want to carry on. I looked at the posts on here about 6 rounds being ideal but could not find anything useful. I did ask my consultant about this about a month ago when he told me I was in clinical remission. He said needed 6 rounds but I didn't pursue the reasons why.

So if any of you well informed people here know the reasoning behind 6 rounds I would be very interested to know.

I hope all goes well for you Estate1. Best wishes Joy

[lankisterguy Volunteer in reply to Jem67]

When you talk to one of the really experienced CLL experts like Dr. Furman or Dr. Keating in the USA or Prof. Hillmen in the UK they will likely say that 6 treatments was chosen as a convenient round number for the clinical trials. So the trial results have the most data for patients that completed 6. But with Chemo some patients experience bone marrow damage or severe side effects and the wise Doctors stop before 6 on a case by case basis.

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I've also hear it said that Chemo is poison but is applied under medical supervision to try to kill the fast growing cancer cells and hopefully stopped before it kills all the patient's good cells. Since each of us and each of our cancers is very different trying to find the right balance is an art form and having the most experienced CLL expert help decide is very critical. If you completed 3 +/- and are having problems, but your doctor is urging 6 without a good explanation, you may want to get a second opinion from someone like Prof. Hillmen before taking more treatments.

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Marrow damage can lead to some really dangerous diseases like MM (Multiple Myeloma cdc.gov/cancer/myeloma/inde... ) MDS ( Myelodysplastic syndromes leukaemia.org.au/disease-in... )

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Len

[Estate1 in reply to lankisterguy]

Len my Hema/Oncologist is not recommending 6 treatments. See my reply to Jem67. Thanks.

[lankisterguy Volunteer in reply to Estate1]

If you notice the header at the top of my reply it says "in reply to Jem67"

I was replying to 'I did ask my consultant about this about a month ago when he told me I was in clinical remission. He said needed 6 rounds but I didn't pursue the reasons why.

So if any of you well informed people here know the reasoning behind 6 rounds I would be very interested to know.

And I fully agree with your reply below and your other comments above that 6 is NOT a magic number, its more a rule of thumb target value"

Len

[Jem67 in reply to lankisterguy]

Thank you for your reply. I haven't had any bad side effects and have now completed round 5. I should have said that I am on a clinical trial so will have the 6th round. The other drug is zanubrutinib.

I was just interested why 6 rounds. Joy

[Estate1 in reply to Jem67]

Hello Jem. My hemo/oncologist originally said 6 sessions of BR was based on clinical trials. Not anything more or anything less. In my case the Dr said because I was not tolerating treatments well at all with more presenting problems with each successive treatment and I was so ill she said there was no need to continue, that it would only get worse. She was happy with blood work (except WBC and neutrophils) which she said could be sorted with the Granix shots. I start that today. CT scan today will reveal lymph condition (which she figures will be satisfactory). She confirmed also that my life expectancy will not be affected nor the length of my remission. Simply there was no need to carry on with the BR. I would also now be eligible for Ibrutinib when and if I require further treatments. Dr said I might tolerate that treatment better.