Clinical Trial - NVG 111-101

[thelutondodger]

I start this Monday 15th at Royal Free Hospital. Does anyone have any experience of this? Seems to offer significant benefits, although I have some minor, natural concerns.

Almost 5 years on Ibrutinib and although most bloods are fine there's still disease present in bone marrow. Ibrutinib side effects (on the rise) have been joint and muscle pain, headaches, cardiac arrhythmia and fatigue.

I'm sort of fit and active and have a new (third) career of entertaining old(er) folks in care homes!

Roger

[Jm954 Administrator]

Hi Roger,

I took part in this trial in March this year, I think I was patient number 5.

Unfortunately, it didn't work for me at all and I deteriorated very quickly over the week I was in the Royal Free. Lovely Dr Jasani agreed it had been a mistake to stop my Acalabrutinib when the treatment started but I had a lot of extensive disease and they expected me to have tumour lysis syndrome, possibly cytokine release syndrome and even ICANS.

After the week in hospital, I went home for the weekend to return on Monday and then found that my liver couldn't cope with even the lowest dose of the BiTE and the treatment was suspended.

As I'd had no benefit and there was no prospect of being able to increase the dose to the required level my participation was sadly ended.

You can read my account here on these two posts

healthunlocked.com/cllsuppo...

and

healthunlocked.com/cllsuppo...

On the positive side you will be really well looked after and the research nurses are lovely. I was allowed even to go for walked on Hamstead Heath with my pump in a bag as the weather was so lovely.

I hope it works for you, good luck and all the best!

Let us know how you get on

Jackie

[thelutondodger in reply to Jm954]

Thanks Jackie. I’m sad that it didn’t work for you. I seem to have good prognosis indicators by not having overloaded bone marrow and have (so far) good liver and kidney functions (despite being brought up on Ansells and M & B! I’ll keep you posted. I’m still taking Ibrutinib by the way.Best wishes.

I’m not brave enough for the Heath with my “pump in a bag”!

[studebaker]

Good luck with your trial 🤞🏻 Please keep us posted as a lot of us are very interested, I am indeed.Dana

[thelutondodger in reply to studebaker]

Thanks - I've had a day in the Royal Free and treated like royalty! I'm going to share my experiences in due course. I've just been passed fit for the trial to actually begin. It's quite an experience but such a blessing to be supported by a wonderful, intelligent, caring, professional NHS. I admit that, as a former hospital catering manager, the catering is first class. Lessons learned so far :- listen and pay attention when they tell you how to operate the lights and the call pad! Being a "bloke" is not a characteristic of achieving a good outcome.

[Jm954 Administrator in reply to thelutondodger]

Roger,

I was treated on the private oncology ward for a week and it was an amazing experience. Ground coffee was served at any time day or night on a tray with a china cup and saucer and lacey paper tray liner.

As a catering manager you won't be disappointed with the food if you are there. They have their own chefs and it's restaurant quality. Always order the ice cream, it's Hagan Daz and you can have that as well as another desert!

Hope you can read the menu!

Jackie

Menu

[RogerPinner]

Roger, I discussed this treatment with Parag last summer when the effectiveness of Ibrutinib started to wane (after 5+ years). Decided against it largely because we were in the height of a covid surge and it would have meant a great deal of traveling to and from hospital which I wasn't happy about....venetoclax seemed an easier option. But if that loses it's effect, and so far so good, the NVG 111-101 treatment could be a very useful option.

As Jackie said, I too hope it goes well for you, and it would be good if you could keep us all updated.

Roger

[thelutondodger in reply to RogerPinner]

Thanks Roger (another!) I started a blog. I will link it in a new post ( if allowed). ShortStory so far :- Day One and most of day Two - a breeze I guess I like all the attention! From midnight, perhaps a combination of the steroids and the PICC line introduced arrhythmia. This in turn brought on sleep deprivation which made me feel a bit unhappy I’d made the choice to join this trial. However a day on a clinical trial is a long time and by the evening of Day Three I was feeling somewhat better in myself and achieved some sleep. Day Four brought more stability and more sleep! Today is Day Five and I’m fairly confident to be sent back home. The nursing, medical and hospitality care is first rate, so caring, friendly and skilful. So now I’m optimistic to continue. Roger (another!)

[RogerPinner in reply to thelutondodger]

Roger, I think most treatments and trails have their ups and downs. Seems like you are headed in the right direction. Please keep in touch.Roger (there aren't that many of us...good to find another.)

[Stacky66]

Good luck ,I’ve been offered the trial but still undecided,hope all goes well for you.Up the Hatters