does any member have p17-deletion and what treatment have they had?? thankyou

[lartington]

[Cllcanada Top Poster CURE Hero]

Assuming you are talking first treatment the NCCN lists...

FCR

FR

High Dose Methylprednisone + Rituximab

Campath with or without Ritiximab

or a suitable clinical trial

HTH

~chris

[lartington in reply to Cllcanada]

thankyou for your reply. my husband has had prednisilone 100mg a day for several months, it was very successful in reducing lymph glands, sadly he developed osteoporosis and developed 4 fractured vertebrae. We are watching clinical trials as the current ones are only available to people who have not had any previous treatment.He has ivig monthly which certainly helps to reduce infections

[Cllcanada Top Poster CURE Hero]

I'm in a similar boat fractured L2 vertebrae with cancer infiltration...likely due to treatment... ;-(

[keepfit123]

I assume for you to be classed as 17p you need 20% of CLL cells to qualify. At what percentage figure above this would you reckon that FCR is not suitable and campath would be the preferred option?

[Cllcanada Top Poster CURE Hero in reply to keepfit123]

I'm not certain that the percentage of cells has any bearing on treatment but certainly TP53 mutation and single or double allele deletion probably does.

~chris

[lartington in reply to keepfit123]

I believe 20% is the preferred option, but my husband is 21%. Campath is being held at bay reluctantly because of the dip in immunity, he is on ivig monthly, he has recurrent haemophil;us infections and previous thromboendarterectomy for pulmonary hypertension. In addition to these problems he is subject to being neutrapenic, he is heavily medicated due to four fractured vertebrae. We understand Campath is aggressive on the immune system, therefore keep all our fingers crossed that n othing gets worse, eating well, and keep smiling, the red wine helps. haha

[Cllcanada Top Poster CURE Hero]

This trial may be coming to the UK...keep an eye peeled for an announcement.

clinicaltrials.gov/ct2/show...

[HAIRBEAR_UK Founder Admin]

Yes Resonate-17 is listed as in planning for the UK within the March 2013 review of the NCRI supported CLL Trials list and review written for the CLLSA. cllsupport.org.uk/Trial%20B...

[lartington]

thankyou for your reply, this trial is not available to people who have had treatment already, i.e. prednisilone is considered as 1 treatment. My husband is a patient at the named hospital in Leeds co-incidentally. We consider him to be extremely fortunate to be at such a wonderful hospital and indeed a patient of Prof Hillmen who is so closely involved with trials in the U.K.However, we understand that it will be marketed in the U.K within 18 months, i.e. no longer a trial.