The melodious voice of Melody, my research nurse, caught me in Sainsbury’s to let me know that I qualified and would be in the TAC228 arm of the trial.
I was excited and thrilled to be starting tomorrow, as was my little family, anxious to see me in treatment.
Then I reread the copious notes on the trial procedures for my arm of the trial, with fasting blood glucose levels due every morning - and then rereading the list of side effects and then I felt not quite so enthusiastic.
Like most of you, I am worried about losing my present nearly normal life, afraid I will be as sick as I was on first line, with bone pain and ever present nausea and chemo fog.
It’s been so wonderful being clear headed this past year and a half.
Losing my hair will be hard, too, as I finally have a style I can live with.
But Hey! This is good news. I am in the scary road-testing arm of the trial. Maybe it will knock this bugger out if me at last!
All you other DICE participants please keep posting.
I shall be in the Day Treatment Centre at the RM tomorrow with my Jazz singing friend.
Hugs,
Laura
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It's fantastic news! You fit the criteria for it and it's also another prevention, which if you have any lingering cells, hopefully kills it completely and keeps you on the earth a lot longer ❤️❤️❤️. Xxx
Really pleased you’ve been accepted. Have just read the trial info. And it all sounds exciting. Do you continue for an indefinite period of time on the trial if everything going well? Thanks and good luck , sticky3006
The trial info left me a bit apprehensive, as they talked mostly about reasons to leave the trial, such as unacceptable side effects and cancer progression. Ugh.
But evidently the trial continues until the last person stops the regime.
Still, I am excited and glad that I have become familiar with the Royal Marsden, so I won’t get lost!
Hi Laura The thing about trials is they are an unknown quantity (I'm on my third). They don't know what side effects you will get , not everyone gets the same, obviously we all react differently. I, for instance, have a 1% chance of getting leukaemia from the Olaparib trial I have been on for 5 years 9 months. I've never felt apprehensive because I always go into the trial thinking this may be the one thing that kicks my cancer into touch but mainly I also forward think that even if it doesn't help me then it may help others in the future, daughters, sisters, mothers, grandaughters etc and I think that above everything else makes me accept any trial that is offered me, not just that it might work for me but that if it doesn't I'll have left a legacy in a way, the drs will know just a little bit more because I trialled a new drug. I hope your trial goes well. Kathy x
I did decide before I knew which arm I would get, that I would stick with the trial even if I was only in the control group, because no matter what, it would contribute to the research and that’s what we all want.
Had my first infusion and lots more testing appointment yesterday and the TAK228 this morning.
I have three lovely research nurses looking after me and I love them all.
Can’t tell how I feel yet, but decided to go back to bed today.
Tomorrow I will try to live normally...but we shall see...
Glad you are doing so well. You are my beacon of hope.
Thanks Laura - will let you know. Having problems getting any response from COC, but have asked my oncologist to refer me to Susana Banerjee - so slowly, slowly! Anne
Elated for you Laura. Good luck, hope the side effects are minimal for you. Dust that wig off or even better get a new one. Something more outrageous like Pink perhaps, just to show your alive and kicking ass. Advantage is they are easier to wear during the winter months.
I think the hair loss is much slower with weekly Taxol. I remember how all my hair disappeared suddenly after three weeks from my first infusion of Carbo/Taxol.
That delighted me at the time -a sign that the chemo had spread all the way to the top of my head, destroying cancer cells wherever they were hiding.
Sadly later, after being Ned at the end of treatment, I discovered that the buggers could somehow evade my toxic regime and spring back to life.
Here’s hoping the TAK228 will stop such behaviour!
Thank you for doing this for the rest of us who don't qualify for the trial. It is people like you who help the advancement of new drugs and treatments for this disease. Hope all goes well and keep us posted. And as for the hair....'don't worry it will grow back'......but that doesn't't help you now.
Sending you strength, hugs and love.
P.S. Apologies for typos and grammar as currently in chemo unit being given far too many drugs that fog my brain.
So pleased to hear that you got on the trial and got the arm you were hoping for. Sending hugs and positive thoughts that you get fantastic results! xx Gina
So happy for your Laura. You wouldn't be normal if you weren't worried about side effects but I know with trials (I have been in two so far) they monitor everything and side effects are important for them to manage (in my experience). Sounds like a great plan and looking forward to updates! oxoxx Judy
Dear Laura, so pleased for you and wishing you well on the trial with a great outcome. We are all indebted to pioneers like yourself who are willing to trial these new drugs not just for themselves but for all of us.
Thats fab news xx you know me a great believer in fate and this is exactly where you are supposed to be, so fingers crossed for you that you tolerate it well 🤞. You have had that year and a half to harden your armour so you are just more prepared to tackle it now 😉. Go get those pesky rogue cells and dont give them a choice! and anyway being clear headed is definitely overrated 😂😂 🙈
This has been s strange new path that has led me to the Royal Marsden and my sweet team of research nurses. I shall keep following this path, as it is always full of surprises, some pretty bad, but some good.
It is a strange path you are right x and i am just on another one now without the parp and i feel great enjoying every day xx my turn to be clear headed 😬 it’s weird 😂😂
Lovely to hear you so positive i am convinced it helps
Wonderful news Laura, so pleased for you. Yes there are lots of things to do for the arm you are on but I'm sure it will be worth it. I started on the control arm on Monday and so far so good, I can feel the neuropathy creeping back already!
I just took the first of the TAK capsules. They are tiny, thank goodness and easy to swallow.
How were you the morning after Taxol?
I didn’t feel so bad, but usually I would take prophylactic anti nausea meds in the morning.
With TAK, we have to have an empty stomach before taking, so I didn’t take my usual meds.
Fortunately, the Nurse called an hour later, and I found out that I can still take my anti acids and anti nausea meds about an hour before taking the TAK.
I hope all goes well with the trial drug. I found weekly taxol easy to tolerate, slight increase in peripheral neuropathy which eventually subsided. Some of my toe and finger nails suffered though and went black and I think this might have been avoided or at least reduced by using dark nail varnish or Evauxnail, a French product.
I lost it all, I think most patients do with Taxol. It's not like Gemcitabine where it merely just thins. It's true what you say though, it's a small price to pay and wigs are so good these days, even quite cheap ones. Good luck again!
So far so good, neuropathy is already on its way back. Otherwise fine. Glad the tablet is not too onerous. Hope the side effects are not as bad as the documents we read suggest!
Hi Laura, sorry this is a very quick and late response but time is of the essence. Fantastic news for you. If it isn’t too late please consider the cold cap. I have recently used it for 8 months whilst on weekly taxol and it has worked really well and such a boost to keep my hair. I have even had it gently coloured too. First 10 minutes are unpleasant but after that it is absolutely fine. Just stick with it and wrap up warm. Well worth it. Hair does thin but my hairdresser has kept modifying my style and I am very happy with it. Hope all goes well xxx
Good luck on the trial! So hoping it works well for you and side effects are minimal. At least being on the trial is a chance?! Keep us updated so we can support and will you through
Brilliant news, hopefully this will finally sort the bugger out. The hair loss is what it is unfortunately but many wigs are superb if you chose to go that way, mine were brilliant. I hope the side effects are minimal but hope the effects on the disease are maximal.
I took part in my trial in 2014 and felt really monitored and well looked after and I still am 5 years on, I’ll be monitored for 9 years in total so it’s really reassuring to know that life line will be there for me going forwards.
Keep strong lovely, you know you can do this. Love and hugs of encouragement ❤️Xx Jane
Sorry for belated response but I wish you the very best. I've been on a couple of trials and I felt well supported by the research team. At least the taxol should bring you some benefit even if your tiny TAK pills don't agree with you. I hope you're not feeling too groggy on Day 2 although the trip to the RM itself can be very tiring. Keep us in the loop so we can support you for the duration. Gina xx
So far so good, and it’s true that i think the weekly Taxol itself would suffice, but it would be wonderful if we found the targeted drug that zapped the disease and knocked it on its head, without knocking us out.
One of my trials helped my disease for several months but after progression I jumped to a second trial which unfortunately didn't help me at all and I had a reaction in the form of a rash. The taxol did me some good but in the advanced stage of my cancer it is very quick to become immune to the drugs being thrown at it.
D I'm in my 9th year of fighting it off so my expectations are never that high. As long as I can win a few more months then I can live with that. I have to!
But if I was offered another trial, I'd like to think I would accept just because of helping others. All the best for your first trial, I'm delighted you were chosen for it. Gx
A new recruit at my local hospital has just moved from doing trials at the RM. I did my trials at the UCLH and they work very closely with the RM, so I can almost say yes!! He was suggesting there may be something else in the pipeline, so let's wait and see. I might do a round of Carboplatin next to see whether I'm still platinum resistant, a trial in itself, I suppose. Hope you're doing OK on Day 3! Gx
I don’t think you have to be BRCA positive for this particular trial. Just platinum resistant, although, I personally didn’t consider myself platinum resistant, but I guess being BRCA1 and having progressed on the miracle drug Niraparib put me up for this trial.
I think, if TAK228 proves effective for us, it will be effective for you.
And, there are many other trials out there and they are always looking for women to take part.
It’s worth it to have a look at the UK clinical Trial Gateway.
So pleased for you, Laura. You and others like you who so bravely step into the unknown will pave the way for an eventual better treatment for this awful disease. I pray it will work for you, too!
My Carol did not live long enough to go for any trials, but I know she would have had she been able.
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