nivolumba expanded access programme

[TERRIpassword]

My dad has just been told today that they will offer him the nivolumba expanded access programme - has anyone been on this ???

xx

[jujuju]

I signed the consent forms last Friday and they have gone off to the drug company. It depends if I have a PD1 mutation. Nivolumab only became available under the early access scheme on february 6th. Its for non squamous nsclc and depends on the applicant having the pd1 mutation. Someone I know has just been accepted and has her first one on 21 march. Takes about a month to come back.Finges crossed as not much else available to me now.

Best wishes

Julie

[TERRIpassword in reply to jujuju]

Thanks hun still waiting for confirmation on exactly whats happening wait is awful scan look like it had spread in the lung but doctor wont tell me over the phone has to speak to dad directly. Have you had chemo etc???

xx

[jujuju in reply to TERRIpassword]

Yes had surgery to remove upper middle and part of lower lobes of right lung march 2013. Cisplatin and Pemetrexed chemo from april 2013. Tarceva/erlotinib from august 2013 to june 2015. Docetaxel and nintedanib from july 2015 to November 2015.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Terripassword

As mentioned Nivolumab targets and blocks a protien PD-L1. Blocking PD-L1 activates the bodys immune system to attack cancer cells. An informative link on Nivolumab is cancerresearch.org - search Nivolumab (Opdivo). I hope this is of some help.

At Roy Castle we are curently looking for information from anyone receiving Nivolumab from a patients prospectus. It would be great to hear from you once treatment has started for you dad. We use this information to help get drugs passed for NHS use.

Best Wishes

[Liampaul03]

Hi, I've been on a clinical trial with this drug for 12 mths I finished in nov last year and so far so good had first scan in jan of this yr and no changes, I was having the drug every 2 weeks via a pick line as vein are bad I went to benidorm last Aug with my line in and I'm planning to go bk in May, hope all goes well for u good luckxx

[TERRIpassword in reply to Liampaul03]

Thanks so has it kept the cancer you have at bay? does had stage iv lung cancer 8cm shrunk to 4cm and stayed like that with radio but couple of weeks ago scanned showed a spread further into the lung will find out more on monday the exact results but they have mentioned this trial as an option. Enjoy Benidorm stay well xxx

[Liampaul03]

Consultant days it's stable at present

[Hazytron]

Had my first Nivolumab infusion on 21st March and so far I am delighted to report that I have no side effects. How good is that? xx