Anybody out there had 7 cycles of FCR treatment for CLL rather than the usual 6?

[yorkie19]

I have had 4 treatments but have concerns, shared by my consultant, that I will still have lumps in my neck after the 6th and final treatment. Wondering what other options there might be rather than just going back on watch and wait with lumps in my neck.

[ThreeWs]

Hi Yorkie19,

There is a saying that upon repeated failures, yet trying the same thing over and over expecting a different result is one definition of insanity. You would be better advised to scope out Clinical Trial options for a different drug protocol to get at those stubborn nodes. I am not medically trained but in your shoes I would be concerned for my marrow health with continued FCR. I am guessing from your "Handle" that you might not be in a position to get one of the kinase inhibitors (Ibrutinib or Idelalisib) which both work very well in cleaning out nodes but from what Chris has posted you might discuss the newer mAb Gazvya (obinutuzumab). I would explore with a CLL specialist your other than FCR options.

WWW

[Cllcanada Top Poster CURE Hero in reply to ThreeWs]

Gazyva is timetabled at NICE for recommendations in February 2015. It will be used with chlorambucil, in first line only according to the scope of the application.

ukmi.nhs.uk/applications/nd...

[yorkie19 in reply to ThreeWs]

The FCR treatment has not been a complete failure in that the lumps in my neck are probably about 25% of what they were before FCR started : the lumps were very big, more than 10cm across and had become very uncomfortable indeed.My consultant thought mine an unusual case in that although the lumps in my neck were of a considerable size, I did not have any large lumps in other locations. It remains to be seen how much the lumps will reduce after the remaining 2 treatment cycles but I and the consultant are not optimistic that the lumps will disappear after the 2 planned remaining treatment cycles. Just had a blood test today to see if my neutrophils are high enough for the 5th cycle to start on Thursday.

[zentangle in reply to yorkie19]

Hi yorkie19,

All the very best with both your bloods and the remaining chemo.

Regards,

zentangle

[zentangle]

Hi Yorkie19,

I would refer you to the re-post made by Newdawn on your other post where a guy called Lee says he's been offered Ibrutinib in the UK. You could message him for details. He's called lee123.

Regards,

zentangle