Morning me dear :happy:

oh my... the yrs never mind the days are rushing by. I love the ethos of you post about life... it's a short life even without the spectre of cancer raising its ugly head..your outlook sums it up perfectly ️

Go you girl putting the world to rights for us all couldn't imagine anyone better suited to your new roles. 

There's wonderful you pulling on your superpower cloak helping everyone and meanwhile there's me who is kicking back, joining craft groups and chuffed t bits I've finally got my state pension nd bus pass :laugh: 

Eee lass.. thank you for being there for me every step of the way.. together the 3 musketeers...all for one and one for all ️

Good morning peeps.

been a while since I posted nd yet... here I am wanting something lol.

So... had my Dexa scan and 2 yrs since last one and seems my bones have found a level of staying about the same as last scan.. still Osteopenia. 
 

I think I've calmed down no end since the discharge telephone conversation where they surprised me with changing me from 10 yrs Lesterol to it's been 5yrs so stop. We agreed them that I'd wait for results of Dexa Scan to see if my bones had deteriorated and all things being equal I'd stay on for a couple more yrs making it 7 yrs of meds. Well Dexa is same as last time but... being a woman.. I've decided to come off the meds as they first suggested.

So.. what do I want.... well as always advice please. Do I just cold Turkey and stop.. or is it best to wean myself off if so how. 
 

Cheers me dears x

Sandra I think you need to see an onco-gynae specialist. Perhaps read some studies about the drug and the type of cancer you had and when you were diagnosed. 
I am on tamoxifen and it has caused all sorts of issues for me this second time - my teeth are just crumbling and I'm taking supplements and all levels perfect. These drugs have a lot to answer for! But for me my markers were 8/8 for estrogen and 8/8 for progesterone and I hadn't gone thru menopause so my only choice was tamoxifen. 
So the long and short is get some professional advice, look on Breast Cancer Now forum - keep asking and pushing until you're satisfied with the information.

My first cancer was a different cancer and I was able to stop tamoxifen after 2.5 years with a 13% risk so I took it. I've been reassured by my onco-gynae and oncologist that I didn't get a second cancer due to stopping taking tamoxifen but the mind wanders....

Everyones dna and cancer is different and how drugs affect each person is different. Your medical team and reading studies to ask the right questions will perhaps give you an answer? It's a very tough choice and only you know your body. Good luck and hope you learn more to make your decision.xxxx

Hi there, I've just found your thread as I too have recently been told I have the Pik3ca mutation so did a quick search on the cancer chat and found your post.
A quick recap on my journey which started with bc in situ in 2006. Small, stage 1 and was less than 1cm and hadnt reached lymph nodes so didnt have to have chemo. But did have 22 lymph glands removed, a lumpectomy and 30 sessions of radiation therapy. Followed by 2 yrs of tamoxifen and 3 years of letrozole. All ok until 2020 (wasnt I lucky!) when unfortunately it recurred. This time it had also travelled to a rib, very small but now classed as metastatic. So then had 6 months chemo, a mastectomy, then began Ribociclib but had to change after approx 18 months as it had progressed again to a vertabrae. Changed to Abemaciclib in January this year. Since the mastectomy in 2021 the cancer marker CEA has been steadily rising but the last few months is now rising in leaps and bounds! And I have just been advised that I have the mutation and so will be starting Alpelisib (Piqray) next month along with Fulvestrant. 
I was wondering, as you have the same mutation, if you have been taking the same meds and if so, how are you getting on with them? 
I'm very happy to hear you are doing so well and enjoying life to the full! :)

Hi... to be fair the consultant and I  had a long discussion on it on the last call together .. discussing based around early detection, size, type etc. She did say there was a small benefit to be had for taking for 7 yrs but even that dropped off after that. She was definitely advocating to stop straight away but agreed to support me if I wanted to continue for a further 2 yrs making it 7 yrs in total. All this was on the premise my dexa scan was on par to last one .... which it was. The only thing I didn't ask ask was if I did stop...did I wean off of just stop lol. 
 

I too am having problems with my teeth.. I'm having to eat softer foods because mine too are crumbling. To be fair when I was first prescribed the consultant said.... keep a close watch on your teeth...he was right. X

Ah thank you so much for the reply. I'm happy to hear you do not need to be on any other treatments apart from the tamoxifen for now and hope that you continue to be healthy and happy and living life to the full. Thats what we all aim for afterall!

The medication that I'll be starting soon is relatively new and was only approved in 2020 and is specifically aimed for women who have bc with this mutation. The advancements in available treatments and targeted therapies has been incredible over the last 5-7 years and we are so lucky to have them available. 
Wishing you all the best along the way on your journey, we have got this! xx

Hi Mlr86 can I just ask why they removed 22 lymph nodes if they weren't cancerous?

Also what were your symptoms when it came back in your rib?

I looked at the study I'd read and it's the drug you mentioned that they treat PIK3CA mutated cancer. I am very bad at remembering anything!

I do hope this drug helps and agreed - advancements and research has come leaps and bounds! So all that fundraising is helping this research.

It's exactly a year ago I did the big pink jump (jumped out of plane) raising money for breast cancer now. I'd do it again!

Hi Sandra, 

It's great to hear that you can stop after 5 years. I took Tamoxifen fot ther first year, then changed to Letrozole when I found the second cancer the following year. I was on this for 6 and a half years. When I stopped, I just stopped cold turkey and I didn't have any additional problems with this. Did you ask your breast care nurse what you should do? She would possibly be the best person to advise.

Kind regards,

Jolamine xx

Hi, well I lived in Spain and back then in 2006 the sentinel node procedure wasn't common place practice unfortunately. They removed the glands along with margins once the tumour had been biopsied and confirmed cancerous.

About 4 to 5 months before I was re-diagnosed in 2020 (unfortunately the year of Covid!) I started with a severe pain first in the front of the ribs on the right hand side, which actually travelled to the side and then to the back over the next few weeks. I thought I had pulled a muscle possibly lifting heavy shopping and my GP gave me anti-immflamatories which did eventually ease the pain after 6-8 weeks. When I was rediagnosed in the September and sent for a PET scan this is when it came to light that I also had a spot on rib 3 (at the back). It all made sense then of course.

Thanks for your good wishes! And well done, you are doing great things to raise money towards cancer research, unfortunately I'm not as brave but do donate on a yearly basis. Its so important for the continuing research. Take care and have a great weekend xx