AVB-S6-500 Trial

[Flute_7]

Happy New Year everyone.

I was wondering if anyone is on the Axlerate AVB-S6-500 trial and if so how you are getting on? I am on the trial at the moment, just coming to end of cycle 3,

[Raphagogogo]

I am not in the trial, but I have heard about it. How are you? The side effects ? Do you have any idea if you are using the trial drug or placebo ? I wife you a complete response soon!

[organicinna]

Hi Am on it at the moment / Today is third round. They only do it first and 15 th day of the month together with Taxol and other weeks just taxol / 3 weeks - 1 week break. But becouse I developed such unplesant side effects and my blood test wasnt good at all before christmass they gave me 2 weeks break. But now they say am fit to carry on pls injections to bring blood count to notmal...wearing cold cap and that is a torchure on its on )))

[Flute_7 in reply to organicinna]

Hello Inna thank you for your reply. Sorry to hear you needed a short break from the chemo but great you are well enough to continue. I too am having treatment today at RM in Sutton, I agree with you about the cold cap , it’s really not nice, but I guess it’s a small price to pay to keep our hair. Very best of luck going forward, hope the trial will be a success for us both xx

[organicinna in reply to Flute_7]

Ok Flute. Shame i don't know yr name and face, i would say hello .Am here but they running late with pharmacy 1.5 hr late, so we here long day.

[Flute_7 in reply to organicinna]

Hello Inna, it was lovely to meet you yesterday and put a face to the name, at least now I will always be able to say hello. Hope you are feeling ok today after the treatment yesterday, it was a long day. Enjoy your weekend.

Yvonne xx

[organicinna in reply to Flute_7]

Yes same here. It wa snice to meeet. My second name is Ivanna. Am Inna Ivanna with "I"pronounce as "E" almost like yours ))) You have a lovely daughter with you. Its so nice she is coming to support you. I wish one of my 3 would but unfortunately they cant. They do support in diffrent ways and after the operation 2 years ago they all looked after me nicely. But to hospital am always on my own , which i dont mind at all at the moment. See you soon dear and take care

Inna Ivanna PS am OK today still that steroids in the system but i took sleeping pills and was able to sleep which is nice. I hate not to be able to sleep with all this treatments ))

[Flute_7 in reply to organicinna]

Hello Inna

I hope you are keeping well ? I haven’t seen you in a few weeks and am hoping the trial is going ok for you ?

I am on 2nd week of cycle 5, can’t believe only 1 cycle left, keeping fingers crossed it might continue a bit longer, but not sure what the protocol is.

Hope to see you soon, all the best. Yvonne xxx

[Smileeveryday2021]

Hello Flute

Yes, I am on it. Have finished 5 cycles and on the “rest week” .

are you Sutton or Chelsea branch ?

am coping ok with the regime.

using cold cap- hair looking dodgy though now

Main issue has been neutrifils low (Pacitaxel) and Hb low- anaemia

Mild proximal neuropathy in feet (Pacitaxol)

How are you finding it?

Xx

[Flute_7]

Hello Smileeveryday, thank you for your reply. That’s great to hear you have completed 5 cycles and soon to start number 6. Do you know what happens after number 6, will they carry on or does it stop ?

I am at the Sutton branch, I completed cycle 3 yesterday, so rest week coming up. So far it has gone ok, although another scan on 23rd Jan will reveal if all is still ok.

Cold cap is not pleasant but so far have managed to retain my hair, keeping fingers crossed it continues.

I’ve just started to notice what I think may be neuropathy but only in one toe and very mild.

Neutrifils and Hb have been ok so far. When I was on Carboplatin and Cylex I had problems with neutrifils and was on injections but thankfully not suffering at the moment.

Very best of luck with the rest of the trial, got everything crossed it goes well for everyone on it. Xx

[Smileeveryday2021 in reply to Flute_7]

Hello Flute, sorry to be slow to reply but didn’t see your message.

In theory you carry on after six cycles but I believe it’s hard to do many more Paxitaxol cycles as the side effects mount. So you may get through 7,8,9 cycles. However it’s my understanding that you can continue on the trial drug/placebo if you appear to be responding/are stable (and not receive Paxitaxol)

I am at the Sutton branch too.

Fingers crossed for your scan on 23rd….

Xx

[Flute_7 in reply to Smileeveryday2021]

Hello Smileeveryday, not a problem thank you for that, it’s a scary thought finishing after cycle 6 and no maintenance treatment, so keeping fingers crossed the offer of continuing trial drug/placebo is available at the end of that period.

I was at Sutton on Thursday with treatment on Friday and wondered if you might have been the other lady on the ward. I was there with my husband who managed to take over one corner of the ward with his work !!

Thank you for your good wishes, scan now done, just waiting for results. Hope you are feeling well and not struggling too much with side effects. I hope to be able to say hello next time if you are at Sutton on the same days as me. All the best xx

[Smileeveryday2021 in reply to Flute_7]

Hello Flute 7,

Yes, that was me diagonally opposite you with my husband trying not to look bored 🥱Good to meet you!

Good luck with the scan results. Hope to coincide again soon 😁😁xx

[Flute_7]

Hello Smileeveryday

I hope you are keeping well ? I was wondering how you are and how the trial is going for you as I haven’t seen you in recent weeks ?

I’m on 2nd week of cycle 5, can’t believe only 1 cycle left.

Wishing you all the best and hope to see you soon. Yvonne xxx

[organicinna]

Hi darling.Am glad your trail goes well. Unfortunately mine didn't work, they took me of it. I got unwell, developed dome severe bleeding, So they arranged 5 sessions of radio therapy to zap that problem. I finished that all today, from Match its new chemo again....

[Flute_7]

I’m so sorry to hear that Inna, that must have been incredibly stressful for you.

Do you know what caused the bleeding, was it as a direct result of chemo ?

I hope the radiotherapy has done its job and the next round of chemo works for you 🙏 , is it a new trial ?

I am wishing you lots of success and have everything crossed for you, 🤞🏼🤞🏼 stay strong 💪 thinking of you. Yvonne xxx