No phase one trial for me at the moment

[Lucidalil]

A little gutted that I can’t get on a phase one trial at the moment. The one I had hoped to get on required a new biopsy, after having an ultrasound to try and get this it was decided that it was just too dangerous. My tumours are still hiding and are difficult to get at .

I have had mega constipation problems for about 3 weeks which now seem to be sorting themselves out, they originally thought I had a blockage but now think it is where the tumours have grown a little and are causing narrowing.

My bile acid malabsorption flagged up again so the DDU are worried that I may not absorb the oral treatment properly. I had an appointment at The Marsden Fulham earlier this week to see the gastro Dr regarding this - just waiting for blood results now.

We were originally thinking to try oral cyclophosphamide next ..... I was sent for another scan last Friday as haven’t had one for a couple of months. The buggers have grown again and have one on my spleen now grrr. After some consideration we are going for a re challenge of weekly taxol as I had great results with this before, so I am starting this on Thursday.

I am still waiting to hear from DDU regarding my enhanced dna tests so may still get a more targeted trial yet.

On a more cheerful note , after losing our dog Barnaby a few months ago and swearing we would never have another as it was so upsetting..... we have just rehomed a retired breeding bitch . She is called Peggy , 5 years old lovely tempered and has cheered us up no end 😁😁. She is a Maltese So she will be a bit whiter when she has been to the groomers but has just been spayed so will wait until she has properly recovered before taking her.

Onwards and upwards 🧗‍♀️

Carolyn xx

[Lindaura]

Well, at least I can congratulate you on your beautiful new girl dog. What a blessing!

It is a shame about the trial. But maybe something better will be waiting in the wings.

I worked hard to get on the DICE trial, but I am already feeling rather dicey and wondering if I’ve made the wrong choice...

I shall be back to the RM on Tuesday and hope to see if I can get help regulating the side effects.

Maybe we’ll meet there someday.

Best wishes,

Laura

[Lucidalil in reply to Lindaura]

Thank you Laura, she is still a little nervous after moving from a dog dominated environment to a people one but I am sure she will be fine given time 😊.

Is the DICE trial making you feel unwell?

Have a good chat with them as they are great at trying to keep the side effects under control.

Carolyn xx

[Neona]

Just love the doggy. I was turned down for the first trial that I was put foward for and was in despair. Then weeks later had a phone call - on the Patriot trial. Keep going!

[Lucidalil in reply to Neona]

Thank you 😊, I will just keep on trying for something else. I suppose I am very lucky being a Marsden Patient so get to know of any new trials relevant to me pretty quickly

Carolyn 😊😊xx

[Solange]

Really pleased you have Peggy to help put your worries slightly in the background. She looks so sweet. Good Luck with your next treatment. Love, Solange 😊

[Lucidalil in reply to Solange]

Thank you so much Solange 😁x

[Maxjor]

I was rejected from a Phase I trial due to my tumor not being big enough (!!) and I was pretty upset about it...they made me wait 4 weeks to see if it would grow, then my scan showed progression but not the tumor--it stayed the same size. They then asked me to wait 4 more weeks and my oncologist (different institution) said no---I would soon get a bowel obstruction if not treated. Went back to "standard chemo" which I am now on. The "good" news is the institution with the trial told me if/when I relapse again either this trial would still be open or the Phase II would be coming out soon. Guess that means I should be hoping for a larger tumor but honestly would prefer not!

Wishing you luck finding something that works for you!

Love your little Peggy. My husband and I foster dogs and initially they are so scared (have not had one yet that did not poop IN our apartment their first day with us!--it's wonderful when you see them start to relax and enjoy their new environment. We just give a lot of love and try not to overdo it! I am sure she will be fine fairly quickly. oxoxo Judy