Clinical Trials

Hi BengaliMum32, I haven't had a clinical trial or been offered one but I know there are and have been members who have been on them and had their lives significantly extended and I know of one who is still alive but it wouldn't be proper for me to discuss them. I'm sure they will contact you though. 

If I was offered a trial I would jump at the chance.

Tvman x

Hi BengaliMum32

I agree with TVMan don't hesitate just go for it... there's nothing to lose.

Thinking of you

Liz x

Hi there and great to see you posting again!

Clinical trials are at the forefront of medical advances. I know of two people here who had successful clinical trials with immunotherapy who are still enjoying life after a very long time. No brainer. Do it and good luck 

Hello 

I too have ovarian cancer and would definitely take the offer of a trial if appropriate for me 

There are not enough funded treatments out there for OC in the UK. Some new drugs are showing great promise in USA but NICE won’t approve funding without further evidence so trials are really important plus it’s giving you another option 

Go for it ! 

Hi - I went on a trial (ModiFY Modi-1 vaccine) between June 2023 - June 2024 but not as a result of treatment failing.  On the contrary, my treatment was working.  I just went on it to help others in the future.  I see trials as "tomorrows drugs today". 

I thought I felt normal again, after the cancer diagnosis and then the immunotherapy.  But I found I felt normal on another level once on the trial.  

Hi Bengalimum32

I was offered to go on a trial study drug as I relapsed 2yrs after my 2nd Stem Cell Transplant I have high risk Multiple Myeloma I started my clinical trial phase1 three weeks ago it is a immunotherapy drug that will target 3 parts of the myeloma it doesn’t have a name at the moment it is called a Trispecific drug. All Is going well  I also have another infusion to help with my immune system every 4 weeks So far so good I am monitored weekly, I am called by research nurse every other day & I have contact numbers to go through to my team straight away. I do admit I was very scared & anxious beforehand I think it is the unknown but my research team are brilliant answering all my questions & worries.

After 2 weeks I got good results that my light chains (cancer cells) have started dropping I start my 2nd cycle on 26th June.

Write down your questions like how long is the drug for, how will I benefit from the drug, side effects, how often & how is drug given to me, do I need any other infusions/transfusions with the drug. Your Team will answer all your questions as honest as they can. I would definitely go for it go along & speak with the Team.

Sending lots of positive thoughts to you.

Good Luck

Jacquie JSB4

Hi Bengalimum, Jacqueline,  When I was diagnosed, straight to Stage 4 Malignant Melanoma, I was told there was nothing they could do as chemo  and RT didn’t work for MM so I may have about 7months left to live, if I was lucky, as it had already spread to lymph nodes, chest, abdomen, pelvis & bones. I asked my onc if there was anything I could try, even with a low percentage of success as low is better than none.

At my next appointment she said she may have found a trial that could help. It was a Combo trial with two drugs. I will cut this very long story and tell you my onc fought to get me one of the drugs in the trial that was a Target Drug but it was not available on the NHS. It cost upwards of £5,000 per month. After contacting many labs that produced it Glaxo Smith & Kline agreed to supply it “under special circumstances” if she did monthly reports for them, she agreed. I was on the drug (which is now licensed) for 3 & a half years and stopped it in Sept.16. Yes 2016!

Much to everyone’s surprise I am still here to tell the tale! What have you got to loose! Cancer Research UK have come on in leaps and bounds since then with Immunotherapy and lots of new drugs for different cancers and are still developing more.