Yes to trial.

[Timtam56]

And so it starts. I’ve made the decision,.

Starting a new post here because the other one was getting too confusing for me.

I’ve been asked to go in for an Echocardiogram on Friday. In 2 days time. Preparation for trial.

But nothing worries me much right now more than how terrible I am feeling.

Just soooooooo lack lustre. No energy at all. So much pain all through my bones. Like a fever feeling, without the fever.

Anybody else have this coming off their last treatment (It’s been 3 weeks since I’ve been off Ibrance and 2 weeks since I stopped Anastrozole.) and waiting for the second line of treatment to start?

I had to call the palliative care nurse yesterday to ask what the hell is going on. He said I have been on Ibrance and Anastrozole for so long, now my body has nothing to help it fight. I’ve jsut been lying in bed or on the couch for the last fe days. To even get in the car to take stevie to a park or walk around the block is too hard. It’s shocking.

I am even wondering if things are moving too fast!

[Discocat]

Hi

Glad that you've made a decision and have gotten onto the trial....from how you've explained things it seems that it will give you more treatment options by doing it.

Sorry that your feeling rough. Have you thought about may be doing a covid test?

Even though vaxed 5x I've had it twice. Second time was achy without any fever and very low energy too.

Hope you feel better soon.

Sending love to you and Stevie.

×××

[Bettybuckets in reply to Discocat]

Very good point! So many people have it now and when I had it my bones ached sooo bad!

[Timtam56 in reply to Discocat]

Thanks for that discocat. And Madame Buckets!

Yes I’ve done two Covid tests. Both….Negative.

And yeah. Just have to keep my chin up hey?

[Andersl]

I hope your pain gets under control soon. You shouldn't be suffering like this.Thinking of you xx

[Figletf]

Prayers that this trial helps you to begin feeling well again.❤️

[Saltandlight]

So sorry you’re having pain and the fatigue. I had the same “run down” feeling coming off Ibrance and Letrozole and it took a while to bounce back. I’m hoping you can get to the bottom of the pain answer and get it under control. Praying for good results with your trial!

[Timtam56 in reply to Saltandlight]

Oh it’s so good to hear someone else had a bit of this feeling. I feel less crazy ready your message. Thank you.

[Cherry38]

Hi Timtam56I am sorry you are feeling like this. I have been on 2 clinical trials, I live in Australia.

I felt very fatiqued between my trials, unfortunately I wasn't on them long as I got progression.

Since I was diagnosed last year I have been on 3 lines of treatment. I have now asked for 2 more biopsies to check to see if my cancer has changed, I have the pik3ca mutation.

I would chat with your medical team if the fatique gets worse, you do have to leave time between treatments and with trials it's more complicated, all the testing to get on can be tiring, mixed with the anxiety. I am glad your covid was negative as it's been on the rise here in NSW.

I pray the fatigue and pain will get better, I was on the Capture trial 1st then inav0121.

I am starting IV chemo in a week. Let us know how you go, sending you a hug 🩷

[Timtam56 in reply to Cherry38]

Oh Cherry38. I’m in Australia too. Melbourne.

I hope the Chemo goes much better for you that’s the trials. Keep us posted please?

I’m going to be on the CAPTURE too….. I hope. Just found out yesterday I have to have a liver biopsy next week. Thanks so much for your lovely response.

Go well.

[Cherry38 in reply to Timtam56]

Hi lovely. The capture trial I got the arm for Capecitabine, I had hardly any side effects, a bit sickly at the beginning and a few aches and pains. On this one I was on 8 tablets a day but was reduced to 7. Unfortunately I got more progression in my spine, as my oncologist wanted me on the piqray (Alpelisib) I had to travel to coffs harbour to get on my second trial.

The Piqray was a standard treatment against inavolisib for the pik3ca mutation. Its such a shame Alpelisib hasn't been passed as yet to go on PBS. Very frustrating.The first week on the piqray and the fulvestrant injections, I had a little sickness and diarrhoea but nothing bad. Gastrostop and maxolon helped.

I was put on metformin which is standard as you have to take your blood sugars daily, they give you a machine for that and you are having constant blood tests fasting. Piqray does put your blood sugars up, but it's very manageable. They return back to normal as I found when I came off it.

It worked on a lot of my tumours by shrinking them in the 3 cycles I was on, but I got two new spots in my 4th and 5th rib so I was taken off.

My liver though had shrunk the two tumours. I have had a few rounds of radiotherapy especially on my breast tumour. I was diagnosed at 49 de-nova and had already got in my bones and then my liver.

I was very disappointed but I am unusual with my cancer, but what ever arm you get they were great meds.

I know we are all are different but I found the side effects very minimal and tolerable.

It's good you have your heart test, they are very thorough on the trials and you will have different tests throughout different cycles. I have more biopsies Monday just to check if I am not triple negative than my first diagnoses of er and pr positive her2 negative. Just peace of mind really.

Hope you liver biopsy goes well. Thinking of you. Melbourne is lovely, I haven't been for a long time, but my daughter is flying over next year to watch the formula one.

Take care and chat soon 💗

[Timtam56 in reply to Cherry38]

Oh you darling for writing all this for me. I am sure others will gain heaps from reading it too.

It is wonderful to learn all these things here.

Thank you so much. And good luck with your biopsy’s and radiation.

[mariootsi]

So sorry to hear you aren't feeling well. Hopefully the trial will be good for you!

[Timtam56 in reply to mariootsi]

thank you Mariootsi

hOpefully I will be better when on the trial. This pain is quite something.