CT results today show I am stable and continue to have No evidence of Active Disease

[Teddielottie]

Just to update you ladies on a similar path ... I saw my onc today and she was pleased with my continued stable results (I have bone mets) . I’m on my 17th cycle of ibrance / Letrozole at 125mg and have no pain , my bloods are fine and generally I feel well (just the occasional tiredness). My tumour markers have never changed (under 22) and are not a reliable indicator for me. I feel more positive as time goes by ( but I did have awful anxiety before the meeting this morning !) . My next CT scan is in 6 months , though I have requested a bone density scan to act as a baseline for the future ( (as Letrozole can weaken the bones long term ). I am still not on any bone strengtheners but will keep this option open in the future , pending future scans. Just spent a long weekend with my daughter in London and somehow managed to clock up 8 miles walking each day ! Hoping you lovely ladies on here get similar positive results as we all live for a cure one day soon X

[Hidden]

Let me be the first to congratulate you! That is brilliant news. I hope you continue to remain stable with no progression. I'm sure we will have a cure in our lifetime.

Sophie x

[Teddielottie in reply to Hidden]

Thank you , and I wish you the same .Stay positive ! x

[Hidden in reply to Teddielottie]

You're welcome! Keeping a positive attitude can make such a difference.

[Wintervt]

This is wonderful news!

[mariootsi]

That is wonderful news! Amazing. Glad you are able to tolerate your meds so well!

I wish you continued ned in all your upcoming scans! You give us hope! Thank you!

Love,

Marianne

[Francesca10]

Congratulations and prayers it stays the same for you and we can all get there💕

Frsnces

[Teddielottie]

Wishing you positive results on 11th ! Meanwhile keep busy and keep moving !

I am now looking forward to going back to my exercise classes (for ladies with breast cancer ) which I took a break from after my left breast reduction op , and after an old shoulder injury (thankfully now okay after physio, exercises and acupuncture ) . I still dog walk my two older King Charles daily and I do daily stretches and a few 1kg hand weight exercises at home . I haven’t yet taken any supplements ...but haven’t ruled them out in the future , but somehow I have managed to keep my neutrophyls above 2 and my WBC above 3.6 ( tested monthly after my week off ibrance) for 16 months . I am a long - term vegetarian , but eat dairy , but haven’t really followed a diet, just fairly balanced 80% healthy and 20% non -healthy . I still have the occasional salted caramel muffin and luxury ice cream , but I could do with losing a few pounds (which I blame on the Letrozole!!!)

x

[Barbteeth in reply to Teddielottie]

Hi there

So thrilled by your marvellous news...as you obviously are

I think the ice cream and muffins are to blame not the letrazole..just kidding...lol...you enjoy your treats..god knows we deserve them

Barb xx

[Jerseygirl45]

I am so happy to hear your good news. Let's hope it stays that way for a long time.

Enjoy your days with things you like to do. Walking is fun and good for you so you are on the right track.glad you spent time with your daughterbarbara

[Zebra2018]

Congratulations! So happy for you. I am wondering with bone Mets how come you are not on any bone strengthening med?

[Stinkinpinktink in reply to Zebra2018]

Great news Teddie, and yes I wondered the same as Zebra about the osteo meds; why aren’t you on them? Just curious as I am on exemestane AI and Ibrance, and soon starting denosumab shots. I am recently MBC bone mets 8 yrs after original diagnosis.

[Teddielottie in reply to Stinkinpinktink]

Thank you . See below my reply to Zebra Re bone meds .

Wish you well with your upcoming treatment x

[Teddielottie in reply to Zebra2018]

My onc has discussed these with me and so far with me having very low volume bone mets ( to two very small areas of the pelvis ) , which healed over after a few months with Ibrance , she suggested putting bone strengtheners on hold for now as she thinks I would be on them long -term and wants to avoid the possible side effects of the jaw bone potential problems ... she has 3 patients out of 100 with this who have all been on bone mets long term . She said my bones are good ( I have had a bone scan previously as well as ct scans) but will review this after each scan . I requested a DEXA bone density scan (which I was told is not routinely done in patients with mets on Aromatise Inhibitors but may be a reasonable thing to do in a case such as mine ) to have a baseline for the future as letrozole can affect bone health long term and she is arranging this for me .

I saw another onc when mine was on annual leave recently after my breast reduction op and he said ,’Bisphosphonates are usually started when patients have symptomatic bone metastasis or when they have multiple or large volume bone metastasis and he said in my case I have relatively limited bone disease and it seems to be under control with my endocrine treatment , there is therefore not a strong indication for bisphosphonates . However, if I have healthy teeth and am not at risk of requirement for major dental surgery then it may be reasonable , particularly if I am worried about my bone health because it would take away any concerns about requirement for bone densitometry monitoring .’

I think it’s the case of reviewing each patient’s needs on an individual basis :_age , how active, bone scan and bone health , size and location of mets , healing etc . Howevever, I may go on bone meds at some stage x

[Zebra2018 in reply to Teddielottie]

I am glad that your onc doesn’t think of one size fits all models! I hope you never need it. Best wishes to you

[Julie2233]

That's such great news

[Godbeforme]

Congratulations also, and thank you! your post reminded me that exercise can build up muscle and support bone as I have a friend with a bad back and as long as he does his weight training, his back doesn't slip out! God bless you and heal us all in Jesus name, amen! <3

[PJBinMI]

That's wonderful news! And I am a tad envious of your visit to London! I'd fly across "the pond" every year to go to London if I could....3 visits have not been enough, lol! Being stable is really great and I hope it will last a long time for you. I've had "extensive" bone mets for 15 years without ever having symptoms. I have been on bone meds (Zometa, then Xgeva) a good part of the time I've had mets. I had to take a break for awhile after back surgery, not cancer related, showed that my bones had gotten soft on the inside, brittle on the outside. I think I was off them for 3-4 years and am now getting Xgeva just every four months. So there is alot of flexibility with how often we get those drugs. I think getting the bone density test is a great idea. I hope you keep doing so well and having energy enough to take long walks and visit great cities! (London and Florence are my favorites! Chicago and San Francisco in the US, where I live.)

[Teddielottie in reply to PJBinMI]

Thanks ! ...and I hope to go as long as you with bone mets ! I too loved Florence , and Italy in general , and London has so much to see . Luckily my daughter is there on internship from uni and we have rented a flat for a few months in a pretty part of Notting Hill , so I plan to do a few more visits soon . So lots more walking on the cards...x

[PJBinMI]

My husband and I honeymooned in London and York. Kew Gardens, the British Museum and the Tate Gallery are three of my favorite places. He loved the transportation museum. I bought three pairs of shoes in Florence and wore them to death, loved them sooo much! My first trip to Europe was an art tour in 1987 and that's when I was in Italy. And of course the food and wine were spectacular! I think I could eat pasta every day and be happy! Do you live in England? I'm not sure what UNI stands for. Give me time and I could come up with alot of nonsense......

[Teddielottie in reply to PJBinMI]

Yes I live in Yorkshire in the north of England .. York is a nice place too for walking . Uni is just short for university ... x

[Charlie_99]

Great news! Inspiring for us all.