I haven't written for a while , just getting on with life! But last week's news is worth reporting.The mammary lymph node they had been monitoring is now too small to report measurements. It was 9 mm last time and has further reduced. My cancer markers are better than two and a half years ago. 15-3 is 72, it had gone up to nearly 200 before letrozole was changed to fulvestrant. I'm still on 125 of palbociclib.
I'm as fit as I could have expected at 75 and work most days in the garden, walk the dog and generally dash about.
We've been Bonar bridge for over a year. Maybe it's the Scottish air,my new partner or just embracing a few new challenges late in life that is having an impact. Who knows? But I'll keep at it!
Carolyn x
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Beryl71
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Well when you have bad health news and lockdown at the same time, you can give up or go for it! I did the latter and it proved to be a good move. Sold my house, moved to the outer islands at first. Have taken on more challenges that I thought possible. It was changing my mindset from acceptance of the inevitable to life has no limits other than those you put on yourself!
Carolyn that's fabulous news. You have embraced life and given the cancer a backseat. That's very inspirational. I've followed you since I joined so very pleased to see you doing so well. Take care.
Hi great news! I have been on Fulvestrant Injections for 3 years now. My CEA numbers are holding - so thats great! I have some side effects but thankful the medication is working! I get terrible hot flashes and night sweats and I have gained weight 10 lbs. but I exercise every day except now both my husband and I have Covid (how lucky can you get) some joint pain but an advil works great! I wish you the best! God Bless you!!PS: I have been battling cancer on and off for 34 years!!! and I am still here. So be happy and Thank God!!!
Well done you. Pretty good indication the AI lost efficacy. The clinical trial for first line treatments in ER+ was for a AI plus CDK. In Australia you only get one CDK on the PBS (NHS in UK?) Latest data (San Antonio) said once Palbocyclib fails stop but Verzenio can be used. Also Palbocyclib was no more effective but I think a few dollars cheaper than the other CDK’s. Here after progression on AI, Palbocyclib, 8 months ago we got a genomics test and a leading genomics Oncologist. We paid $AU 3300. Also a pharmacology report. Told us what we knew sensitive to opoids. She doesn’t do strong meds as risk of addiction, fog in brain.
That showed variants (mutation?) and oral SERD ie Fulvestrant combination therapy first option. We only got the Fulvestrant from conservative new Oncologist.
Markers 22! ( Note marker trend the guide not actual value a with blood work, how you look and feel) So far so good. If it’s not broken don’t fix it.
However if you are able to get a genomics report , Guardant 360 in US? Don’t know what UK.
Orserdu, an oral SERD, ie no jabs in the behind has even better response for our ERS variant. Company is gouging as first in class, very expensive. Astra Zeneca (Camizestrant ) and others have in trials.
Also Faslofoxifene in trials as a second option.
Even a CDK2 In developed my partner read about.
Of course immunotherapy is showing great promise as well, even in solid tumours Car T cell etc.
Thanks for all the info. Don't know about genomic testing but my doctor said that if another change was suggested, to get a consultation with Royal Marsden. Clearly this combination is working currently. The protocol in my health area is that once palbociclib fails you move to a chemo drug. Or you pay. Fingers crossed.
Yes I understand the protocol’s are laid down by the august oncology colleges, expert boards but lags cutting edge research, practice. MD Anderson, US (generally accepted world leaders) are all across precision medicine , genomics. Our second opinion doctor has a PhD in cancer research from Oxford and seems to know what he is talking about.
A research trial is going on in Australia on reduced doses of chemo drugs and some parts of the world , Japan ? use low dose Xeloda as a combination treatment.
Also hopefully these advances will stall the dreaded chemo option.
I'm glad you are feeling so well! I wonder whether ribociclib would take your cancer markers down to the normal range(30 or below) as it did mine. Best of Wishes, Cindy (age 78)
I have no idea when they were last normal and what was normal for me. I believe the consultants trust scans and how you present. I don't know if this health board uses ribociclib. But thanks for suggestion.
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Good news!
Good News! 
Good News 
