Trial drug

Hi Jacquie, though it's nice to hear from you again, I am so sorry it's under these circumstances, and understand the difficulty with informing family, my eldest daughter 52yo recently had a recurrence, and my kids mum, a cancer diagnosis which was almost a certainty, and telling family is such a personal thing, if, when and how can only be determined by those who know them.

That's great news there is trial drug, and I will have everything crossed its a  successful one for you, I'm sorry I have no personal experience of them, but I do know a few of the lovely people on here have done amazingly well on them, and I'm sure they will come along to share their experiences.

Jacquie, I remember you posting before as like your husband, I have advanced prostate cancer, can I ask how he is doing.

My best wishes for next week, good luck.

Eddie and Sheila xx 

• Hi Eddie & thank you for your kind reply & rembeing my husband he is doing so well he was finally put on airbetrone, 3 monthly zoladex injections & it is working great he will be in his 4th year if diagnosis. His PSA is 0.05 he is able to do all his daily activities he does tire easily & has bone pain but he takes pain relief. We support each other which is great.
• best wishes
• jacquie

Hi Jacquie, your welcome, and It's good to hear your husbands doing well on his treatment, though I empathise with him tiring quickly and bone pain, I see you too are posting at silly o clock, thanks for your good wishes, always appreciated, and the same to you both, my bedtime.

Eddie and Sheilaxx

Hi Jacquie, Welcome back but I wish you weren’t here at all! I am usually around at this time and later, I’m the night owl, Eddie too! I am so pleased your husband is doing well on his treatment as he will be able to support you through yours now. I got screened for a Trial Combo my oncologist thought might help but I failed the screening. ( long story) However my onc was amazing and contacted all the Labs that made the 2nd drug asking if they would supply it to me “under special circumstances” and GlaxoSmithKline agreed. As it was a Trial drug it was unlicensed so the NHS wouldn’t fund it! I am telling you this just in case you don’t pass the screening to let you know that it is not always the end of the Trial for you!

I was on the trial drug for about three and a half years but eventually came off it because of the side effects. During the time I was on it, I was worried that when my Team told me to have a break for a week or two, then it wouldn’t work. How wrong I was! I stopped the drug in Oct 2016 and low and behold, I’m still here, I had a complete response! I hope you are as lucky! When you read all the pages of side effects, don’t let it put you off as it could save your life and you may not have any side effects or even just one or two. I can empathise with the fact you already have had to tell your family about your hisband’s cancer too. We also had to do that. In Sept 2023 my husband was dx with bowel cancer, had major surgery then got the all clear. At his 1 year anniversary a CT scan showed cancer of the bladder, again he had surgery but minor, just to remove the tumours and do a biopsy. He has just finished his 6 weeks of chemo and will have his scan in 3/4 weeks. We also support one another! Never give up!     We certainly won’t. They are developing new drugs for lots of different cancers monthly, so the cure may well be out there. We take it a day at a time and enjoy the good days and rest on the bad days! It is the most difficult thing we have done, telling our family but they are a lot stronger than we thought and I am sure your family are too. Please let us know how you are doing!

Thank you Annette I am usually very positive person I think I was just having a wobble you feel well then get bad news. I am so so glad you & your husband are doing well your reply & advice does give me a big lift.

best wishes

jacquie

I went on a trial from Jan 2023 to June 2024.  It was for modi-1 vaccine, one of a number of new drugs to benefit from advances in techniques following covid.  

I was lucky. I responded ok to my treatment - the standard approach rather than the trial. I was on standard treatment a year before the trial.  Perhaps there are long term benefits for me from the trial.  But the trial made me feel much better in myself.  I never realised how bleugh I was still feeling until the trial made me feel normal again.  

I hope you pass the trial screening.  

Trials are not without risk, but I see it as "tomorrow's drugs today".  My treatment was being effective when I started the trial, but I went on it to help others, thinking it didn't and wouldn't work for me, because my existing treatment was working.  Weird logic in retrospect!  

Hi Mmum thank you for your message on your experience  on trial drugs. I will take on board all what you have said, I will update on the site, my trial study is for 5yrs.

best wishes

jacquie

Hi Jaquie, I hope the lift will last and you get on and finish the Trial! Sorry my last reply was very long but it is difficult to say in a sentence! Keep in touch!