Waiting on clinical trial - currently on no treatment

[Sunnydrinking]

Hi

I’m still waiting scans & further tests etc to hopefully participate in the Emerald clinical study.

Since stopping palbociclib and letrozole I feel awful. I ache all over and I’m really tired all the time. On a plus side I’ve lost a bit of weight but I’m still far too heavy.

I just hope and pray that I start me next treatment soon as I’m concerned the cancer may be progressing further.

I liaised with the lead nurse this morning and she said I should hear about scan and test dates soon. I see the clinical study oncologist on 30 July.

Will keep you posted.

Jo xx

[Wintervt]

Hi Jo,

I’m in the same situation. The clinical trial required that I have a “washout” period of 42 days before starting. I’m super tired and have no energy. I’m meeting with the research team Wednesday, hopefully I can start treatment. Thinking of you and sending positive energy!

xo Jade

[Sunnydrinking in reply to Wintervt]

Hi

Sorry to hear you are not feeling great either.

My washout was only two weeks but I’ve already exceeded this. I’m a bit concerned COVID could be delaying things.... as it shouldn’t be budget as I understand the pharmaceutical company picks up the cost not the nhs.

I hope you get to start your next treatment soon. Keep us posted how you get on.

It’s so strange that whilst on palbociclib and letrozole I didn’t really suffer any side effects.... & now I’m feeling rotten.

Jo xx

[mariootsi in reply to Wintervt]

Jade, hope and pray Wednesday brings you your new treatment and that it is successful.

[Wintervt in reply to mariootsi]

Thank you!💕

[Hidden]

Jo! I think it's great that you'll be participating in the study, once everything "clears"! I did a quick search and, wow, it looks very promising!

I'd also be worried about progression in the interim, but unless something really crazy is happening, I'm hoping that you'd be able to beat back any progression with the new treatment... If you put on rose-colored glasses, you might even view it as adding a month or two to your longevity by dragging things out?

And I'm sorry that you're feeling so fatigued in the meantime! When I was initially diagnosed, stage IIb/IIIa, 10.5 years ago I did ACT chemo. When I was done, I felt worse than when I was on it!! I mentioned this to my doc, saying "I feel like I'm going through drug withdrawal!?". She said "You are!", but if I remember correctly she noted that this was probably mostly about the steroids (?) they included in the infusion? But maybe it's similar with some of the oral treatments...your body gets used to it and misses it when it's gone?

I'm wishing you great success with the new treatment/study! You're a pioneer and I hope to be able to benefit from this in the future!

Take care,

Lynn

[Rhwright12]

Good luck to u! Hope this next treatment line does g The trick for u for a long time...😀❤️🙏🏻❤️

[Hidden]

Hi Jo,

I hope you can get started on the clinical trial soon. It must be hard waiting for everything to start back up again. Could the aches and pains be withdrawal symptoms from the drugs? If you have been on them for a long time that might explain how you are feeling. I would mention it to your oncologist or oncology nurse to see if they can shed some light on the matter.

Take care,

Sophie x

[Totheriver]

Hope things will get moving soon so you can start your clinical trial....

Theresa

[Sunnydrinking in reply to Totheriver]

I’ve just had a call - CT & MRI scans scheduled for Friday afternoon.

Jo xx

[Teddielottie in reply to Sunnydrinking]

Just seen this and wish you all the best for Friday ! Will be thinking of you ! Boost your immune system with lots of extra berries/fruit & veggies , salads , nuts , avocado and water . x 🍀💚

[mariootsi in reply to Sunnydrinking]

Yay! You are on your way!

[Totheriver]

That is great!🙂

[mariootsi]

Jo, praying you get on with scans and treatment soon and that the treatment knocks out that damn cancer! May you benefit in all ways and that you hopefully feel better while you are waiting!