This is the first significant change to report, other than the reduction of lymph nodes after the first few weeks on the study which I began in September. (My neck, axillae and groin all clear now).
On Tuesday I had a CT scan at Bournemouth and on Thursday, the first 'study day' of my 5th cycle, I received a copy of the radiologist's report. I am pleased to say that there has been a dramatic improvement in the heavy tumour burden especially in my abdomen and spine. A mass in my chest (mediastinal and hilar adenopathy) has reduced from 40 x 30cm to 25 x 15cm, so almost half the size. Another CT scan in cycle 9.
Also my blood counts have improved, white blood cell count down to 71 from a peak of 150 after I started treatment. RBC up to 4.00, Hg 128, platelets 120 (from 83 at their lowest), neutrophils 5.0. No significant side effects to report.
Hopefully these trends will continue. I know at least 1 other person here, (Fish61), is on this study and I would be interested in hearing how others on this study are doing.
Best wishes to all, especially to those in treatment.
Mikey
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Mikey47
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Sounds all good and par for the course. I started same deal as you in early September, now on cycle six as of today. I started with WBC at 250 hg7.2 platelets 8 , today WBC 50 Hg and platelets both 15. Ct scan showed normal spleen , no nodes anywhere and no side effects, Turbo charged energy, shaking colds off in a week with no antibiotics. So touching wood, a wonder drug so far.
Hi Berrytog, Good to hear you're doing so well. Which centre are you at? You are a little ahead of me, I started at the end of September and have just started cycle 5.
I have the 11q deletion as you've seen from my response to Brian's post, plus a very heavy tumour burden (which the 11q- is notorious for). We are lucky to have avoided chemo. Onwards and upwards!
Lets keep our fingers crossed, the road ahead is unknown and new side effects are being notified from others being treated, see my response to Brian post about the future of Ibrutinib, whether to continue to treat ad infinitum or stop when in remission. I am being treated at King's College, London.
Yes, the future is uncertain. I know that with the 11q deletion, the CLL will always come back. It's just a matter of how soon. Those of us with the 11q- will need a maintenance therapy.
As a matter of interest, and on a different subject, Stonehenge. Did you know that the stones at Stonehenge were not arranged as they are forty years ago, they were all over the place and there were no headpieces on top of the columns. I learnt this from a friend of mine who was in the Royal Engineers, he said that they used to go there to practice with their equipment and they put them as they are particularly the headpieces, in fact they used to cook and brew up on the stones. I found this an incredible story so I checked it out and found that, in fact, it was actually true!!
Yes, the reconstruction actually started in 1901 and lasted until the early sixties. I was in the area in the late sixties when the site was open and one could walk around it freely.
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Clinical Trial Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab Untreated CLL & SLL @EU & UK locations
Diagnosed with Richters follow up - great news
