Hi my friends,
I’m on my third recurrence and my Dr. is trying to get me approved for mirvetuximab soravtansine treatment. It is a drug that has not been approved yet by the FDA, but is in a stage three clinical trial that looks promising for the near future. Any thoughts?
Sonja
Hi Louise62I had to look it up but it seems that this drug looks promising for epithelial cancer? It would be great if you can get on the trial! Keep us posted xx
Hi Sonja,
I was researching this drug for my mum. It's promising that it's in phase three trials. Women with high Folate Receptors (FR) have much higher response rates.
I really wanted my mum to get on this trial but she wasn't eligible due to too many lines of chemo.
They can very easily test your tumour for FR expression. I believe that more than 50% of women with ovarian cancer express high levels of FR.
The earlier trials delivered mixed results because they took on all comers, whereas now they assess results or enrol patients based on FR levels.
Wishing you all the best and hope you get onto the trial.
Hi Sonja.Thanks for the information on this drug. I've never heard of it and didn't know about Folate receptors testing either. Can the test for this be done in the UK??. I'm in Ireland and doubt
Very much that it can be done here. HRD testing is not available here either.
I hope you get on the trial Louise.
Best wishes
Ann
I am not sure about the trial being done in the UK. My doctor seems to think it will be approved and available soon, outside of trials.
I honestly think it's only a matter of time before this drug becomes available and is used in earlier lines of treatment. How doctors use it will differ. I think some oncologist will incorporate it earlier (maybe in second line) to give patients a longer break from standard Taxol/platinum chemo so that the chemo is more effective in later lines of treatment. Others might use it when chemo stops working.
Hi Ann,
The trials are sponsored by Immunogen and I believe the test kits are ordered from them directly. I know my mum's oncologist was waiting for test kits to arrive.
I looked up trial locations and it looks as though there is an active phase II trail (not recruiting new patients) in several locations including Ireland. I've pasted the locations below and the link to the trail. It might be worth asking your Onc if there is an active phase III trial that's recruiting in Ireland.
Hope this helps.
clinicaltrials.gov/ct2/show...
Mater Misericordiae University Hospital
Dublin, Leinster, Ireland, 7
St. James's Hospital
Dublin, Leinster, Ireland, 8
Cork University Hospital
Cork, Munster, Ireland, T12 DC4A
Bon Secours Hospital
Cork, Munster, Ireland, T12 DV56
University Hospital Waterford
Waterford, Munster, Ireland, X91ER8E
Beaumont Hospital
Dublin, Ireland, 9
Thank you so much for this information. You are very kind to go to the trouble . Knowledge is key,and being one's own advocate is crucial. I'm doing very well TG but always want to have a Plan B!. I hope your mum is doing well also. She is lucky to have a daughter like you. Slàinte, ( good health).
Ann.
It looks promising from what I've read
Hi there, i trialled this drug from august until December last year but unfortunately it stopped working for me after 5 months. I had a problem at one point with blurry vision from side effects but lasted about 2 weeks. You have to take a regime of eye drops while on the trial and have eye checks regularly. I had peripheral neuropathy in feet and hands but was treated with gabapentin. Other than that no other side effects. No sickness, no tiredness, no pain, was nothing like traditional chemo which I think was great. This was my second recurrence and my options were this or weekly taxol, as the opposite side of this trial is to get randomised for weekly taxol anyway it was a no brainier to give it a try. Although it only worked for 5 months I feel it was worth doing. Also with it being a phase 3 trial the trial evidence is looking very good in favour of the mirvetuxemab. Any questions don’t hesitate to ask.
Mandy,xx
Thank you so much for your input. Sorry that it only worked for five months. I wish you all the best.
Hi Millie-c, jumping in on this conversation; i have just started this trial and am on cycle 2. Like you, i'm now experiencing quite moderate peripheral neuropathy, and some blurred vision. Can i ask; how long did it take for the Gabapentin to work? and did the neuropathy go away completely or did it come back on the next cycle?
Presumably you are on weekly Taxol now? If so I hope its going well for you.
Lisa
Hi there, the Gabapentin took about a week to make things better but I did up my dosage from 100mg 3xdaily to 300mg 3xdaily. The peripheral neuropathy is slightly still there but that is to be expected with weekly taxol. I had that for 4 months then changed to carbo gemcitibine which seams to be working well. My ca125 has gone down from 5000 to 217 so amazing. The blurred vision sorted itself out in about 3 weeks but I do think they lowered the dosage because of it. I hope the treatment is doing great for you and you don’t have any other side effects. I found it much much kinder than chemotherapy, and although I only got 5 months from it the testing they have done so far indicates most women do better than that so I wish you luck that it keeps the beast away. Take care and any questions just fire away. Mandy, xx
Oregovomab Clinical Trial
Is Avistan being approved by the NHS?
Struck. Chord with me today 
