Third Faslodex injections: Hi Ladies... - SHARE Metastatic ...

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Third Faslodex injections

Barbteeth
Barbteeth

Hi Ladies

Just had my third injections of Faslodex today and from now on they’ll be monthly thank goodness...had bloods taken and my denosumab injection...lots of needles!!

Anyway my markers have fallen for the first time in about 8 months so I’m hoping this is a good sign that it’s starting to work...also my haemaglobin is now 10 instead of 8.3

I know my next scan will be more conclusive and I know markers aren’t very reliable but it did cheer me up a bit

Barb xx

106 Replies
oldestnewest

Wonderful news xx

Barbteeth
Barbteeth
in reply to Andersl

Well it’s a step in the right direction but not getting my hopes up too much in case it’s just a blip....see what next scan shows

I’ve had so many disappointments lately that I’m scared of feeling too positive...does that sound mad?

Barb xx

Hi Barb

I don't blame you. Going through agony with treatment causing terrible bone and nerve flares. wish I had not even started it. Just hoping it all goes away. Due for radiotherapy as well as starting next round of chemo on Monday. I keep wondering why I'm putting myself through this hell. The answer is pretty simple really - hope.

We all live in hopes of better days, improved treatment options, perhaps even that elusive cure.

Take care. God bless.

Cherie

Hi Cherie

I’ve often thought of just not having any treatment at all and just taking my chances...then my sensible brain takes over and I go along with it although I don’t think I could do chemo...not at this stage and I think you’re a plucky lady to have agreed to it...I know lots of ladies who cope ever so well and take it in their stride and I have great admiration for them

I wish you the very best with your treatment and hope you have a really good result

Barb xx

Hi Barb,

What wonderful news, I am so happy for you!

xo Jade

Hi Barb,

After the discouragement you have felt lately it's about time you had some good news. I am really pleased for you. I hope you are feeling better physically now that your haemoglobin is back up. You must have felt so drained and tired before.

Sophie x

Barbteeth
Barbteeth
in reply to SophSP

Thanks Sophie...the transfusion certainly helped and the faslodex doesn’t wipe out the bone marrow like the other drugs...I’m also taking iron tablets every day

I can certainly feel the difference although this hot weather is making me feel so lethargic...my poor bunny was suffering yesterday so I wet a big bath towel and draped it over his hutch so he’d be cooler

Think we’re in for a storm now...clouds are gathering

All the best

Barb xx

SophSP
SophSP
in reply to Barbteeth

I have also been feeling lethargic in this weather too, Barb! Your poor bunny must have really been suffering. I hope we do get some stormy weather. Anything but more heat!

Have a good weekend!

Sophie x

That is a lot of needles. Some days it seems like we are pincushions 😉. It is great news your markers are falling and your levels are up. My oncologist had never mentioned markers at all till last month when he told me mine had fallen a lot. While scans are the conclusive evidence, a change in markers is definitely worth being happy over. I know I was. I hope you have a lovely weekend. ❤️ Sarah

Barbteeth
Barbteeth
in reply to Sarcie

Thank you Sarah

I do hope the markers are a good indicator of what’s going on...my oncologist spoke to me on Wednesday and said not to be surprised if the markers were the same as it can take three months before they drop so I’m telling myself that there’s been a good response to the faslodex

Barb xx

Sarcie
Sarcie
in reply to Barbteeth

Keep thinking good thoughts ❤️

Disappointments make us all guarded, but as I keep telling myself often, it ruins the joy of today. My hope is that you enjoy the positives of today which is always easier when we feel a bit better!

You are so right

Carpe Diem

Barb xx

I love good news, you were due some! glad you are celebrating it <3 God bless you and heal us all in Jesus name, amen! xo

I’m drinking a bottle of Italian beer...very hot in UK so that’s my excuse!

Barb xx

hmmmmm .... don't think I've ever had an italian beer. hubby told he couldn't have his wine anymore with a-fib and I had pretty much already stopped because one beer and I'm inebriated, which is not the desired effect. Such is the life of a tee-totaler LOL ... I've had a mexican beer ... CORONA ay yi yi ... never again simply because of the name. They make a pretty good non-alcohol beer but it's twice the price and I'm a tight wad ... not that I can't afford it, I don't want to pay more for something that is LESS ... does that make sense? forgive my rambling all over your post ... <3 xo have a blessed evening!

It does make sense...you may as well just have a non alcoholic drink...same with ‘mocktails’...no point spending more for no effect

Nastro Azzurro is the Italian beer...very light and delicate and not very strong

Barb xx

I need to do some research for beer with less alcohol. I did find out that hubby's left over, cheap and dry, red box wine is absolutely delicious if you put half grape juice in it, yummy! I feel guilty drinking his wine behind his back, but he didn't give it up till after the last heart episode and was told it was causing the afib. sad, I hate to see him have to give up his 1 vice that he seemed to really enjoy ....

Great to hear improvement news for you! Praying for good results from this treatment. ❤️🙏❤️

Barb,

I am so very happy for you. I think your labs are worthy of feeling hopeful. I know increasing markers don’t always translate to progression, but I believe that decreasing markers are always a good thing. My oncologist warned me of the same when I started Faslodex. She didn’t even order markers for the first two months because she knew I would react negatively if the markers didn’t do down. She said it would take a few cycles of Faslodex. She was right.

I know how you feel about feeling cautious about being hopeful. I am consistently hesitant about feeling hopeful regarding treatment. I convince myself that if I am hopeful and there isn’t a positive outcome, the disappointment will be greater. And even worse, I convince myself that somehow my feeling hopeful will yield bad results. That’s really twisted thinking on my part. I get so annoyed with myself when I do have a positive outcome knowing that I’ve wasted precious time between scans preparing for the worst.

Barbara

Hi Barbara

This is me...sort of wary about good results...I think it’s because I know deep down that it won’t last for long and I’ll need to switch treatments...as you said it’s a peculiar way of thinking but it’s how I am...a bit superstitious of getting too happy about stuff then it all going wrong

Barb xx

Barb5
Barb5
in reply to Barbteeth

I think we pretty much all feel that way because we are dealing with something that is not cureable so perfectly normal reaction

That is a great news I am happy for you

So good to hear, Barb!

Barbteeth
Barbteeth
in reply to mariootsi

Thanks Marianne

Just hope the trend continues to go down with my markers

One of the nurses was telling me there’s one of their patients who has been on faslodex only for years and years ( I know she was trying to make me feel better!) but I suppose anything is possible with this hideous disease

All the best

Barb xx

mariootsi
mariootsi
in reply to Barbteeth

Anything is possible!

This is really good news! Although you're understandably cautious about feeling optimistic, a downward TM trend is definitely nice to hear! Hoping it will work well for years to come!

Barbteeth
Barbteeth
in reply to Bestbird

Like I’ve just said to Tam56... it’s the not knowing that’s the awful part

Thank you for your good wishes...means a lot

Barb xx

I’m so glad this treatment is doing it’s job! May you have a long time on it.

I keep waiting for the other shoe to drop as I have been on Ibrance 2 years already.

So happy to hear your good news.🥰

Barbteeth
Barbteeth
in reply to Tam-56

Thank you...I know what you mean about the shoe thing...every treatment is a gamble!!... you may be fine for another two years...nobody knows...that’s the worst thing about this disease

All the best

Barb xx

Great news! Fingers crossed that the Faslodex will keep working for you. It would be nice not to have Ibrance exhaustion for a while! You have a right to feel wary but I’d try to ignore it and enjoy knowing that things look good this month! I think your bunny needs an iced carrot! Elaine

Barbteeth
Barbteeth
in reply to Red71

Thanks Elaine

My oncologist rang me tonight on a web camera thing which was hilarious as neither of us could make it work...can’t do it on WhatsApp apparently as it’s not secure for confidential stuff....she wanted to see my lymphodema arm

Anyway she seemed very pleased about the markers as they’ve dropped by about 400... they were ridiculously high though and she’s planning on seeing me three monthly instead of monthly which I’m hoping will decrease the stress on me although I still have to pitch up at the hospital for my monthly injections

All the best to you

Barb xx

Sounds positive news about the Tm drop ... fingers crossed for you !

What did she decide about your arm ...hope the tightness feeling has reduced with the light stroking method .

.I have yet to have my first web cam onc follow up ...but I have heard from another lady that our onc sometimes does them working from home , with 3 labradors in the background ! But that could relax some ladies too ! 😂 x

Thanks for asking about my swollen arm...I’m doing the exercises I found in google and they do reduce the swelling a bit...I think the heatwave were having isn’t helping and the sleeve I got from amazon is uncomfortable...apparently the lymphodema clinic opens in August and I’ve got my name down for an appointment with a physiotherapist ...I’ll learn how to help myself hopefully

There’s always something with this bloody disease...however I prefer a swollen arm to a progression anyway

Barb xx

girlsptz
girlsptz
in reply to Barbteeth

Barb I'm thrilled for you. I think tumor markers can be reliable for many ladies and it goes without saying that dropping instead of rising is always good. Your oncologist is obviously feeling positive in how things are going for you with extending times between appointments. That will be so nice for you. Enjoy your freedom and summer. Take care.

Sandra

Barbteeth
Barbteeth
in reply to girlsptz

Hi Sandra

I think my oncologist doesn’t need to see me as much as I’m not taking Ibrance or similar so I guess she doesn’t need to worry re white cells issue....she said I can ring/ text her anytime which is nice of her

I’m now going to try and brighten up

I’m going with one of my daughters to buy some chickens today!!!... she’s always wanted some since she was little...her husband is just amused by it all...I treated her to a coop yesterday so it should arrive today ( in a flat pack!!) it’s all quite exciting...at least I’ll get some eggs out of it

All the best to you Sandra...often think of you as we were diagnosed around the same time

Barb xx

A chicken coop sounds fun ... and think of all the extra iron from those eggs !

We back on to farmers fields and this time of year we have lots of sheep brought in to graze . This week in the heatwave I have woken at 5am to the sound of sheep !! And we have been sitting outside in the evenings watching the lovely sunsets over fields of sheep . Such simple pleasures ! Enjoy ! x

Ahh I find sheep so therapeutic...although I don’t have anything to do with them...one of my favourite things is just standing by the field gate and watching our horses...there’s a poem about this...’we have no time to stand and stare’...think it Christina Rossetti

As you say...simple pleasures

Barb xx

girlsptz
girlsptz
in reply to Barbteeth

Barb that sounds like a very fun day. It will be so cool to have fresh eggs.... I'm envious. Hope you got the coop all put together and the chickens settle in easily.

Now a bit of a funny story...... probably about 10 years ago now the daughter of my elderly neighbor came by one day and said she wanted to show us her new ' silky chickens'. Now these are not like typical chickens they are tiny pets... In she came into my house with these little guys and proudly put them down on my floor. If that wasn't bad enough I at the time had 3 dogs so I rushed to grab those chickens before my dogs got to them. She said....oh no don't worry they are pets.....yes I said but my dogs probably think they might be lunch. Some people are clueless honestly. Anyway I scooped up quickly and disaster was averted. Your post made me think of that time.

Brighten up my friend and enjoy the freedom of less appointments. My oncologist gives me free reign so I tell her when and how often I want to see her. I'll see her next week but don't plan on seeing her again until September. Have my repeat scans then.....

Please keep us updated with the chickens. Take care.

Sandra

Barbteeth
Barbteeth
in reply to girlsptz

Hi Sandra

Love that story about the silkies...we’ve had similar with cats and a budgie and a hamster only with dire consequences!!!... this was Vanessa when she was a little girl...she didn’t think the cat would kill them...you learn by your mistakes

Your oncologist sounds really good and I know you have great respect for her....

Barb xx

Red71
Red71
in reply to Barbteeth

I’m glad your numbers dropped! I can see you both fumbling with the web camera thing. I haven’t had any medical appointments that way but I’ve done one zoom happy hour and didn’t find that it made me really feel I’d been social the way I wish I could be.

Going in to see her 3monthly will be nice, and it will be that much less exposure to Covid, even though you still have to go for those monthly jabs. I do hope that it decreases your stress. Hugs, Elaine

I take it you don't have an iphone because iphone's do it all flawlessly ... brother in law even called us on facetime one night, video chat from southampton to galveston, tx! texts are free as well to my sister and brother in law over there in the old country by you <grin>. facetime is free in your own country, I always forget to ask him if he was charged for it or not! grrrrrrrrr

Yes I have an I-phone which works fine for WhatsApp but she was in some platform thing (?!)... as it’s encrypted for confidentiality...anyway she’s had trouble with it with other patients so it’s not just me!!

All the best to you

Barb xx

facetime is built into the iphone. I'd say more but I never use the feature except for that one time when Brian called us on facetime and he's 78 and totally tech challenged. have a blessed rest of the weekend; is a visit to Bugsy in your weekend plans? you know he misses you, don't have to ride, just love on him and get some of that wonderful horse breath in your face. :) <3 xo

Definitely going to see Bugsy (and Monty) tomorrow...blowing a gale though so won’t ride...riding with a chum Monday...we’ll gossip at the same time!! Getting the chickens tomorrow as well

Have a lovely weekend

Barb xx

Hi Barb. That was such a good thing to read this morning. Your drop in markers is no small thing. 400 is a lot so go ahead and celebrate🍾 Feel happy and don’t look beyond the good news you had today. I know it is easier said than done but we deserve a ray of sunshine after some stormy clouds😊.

Hi there

It’s strange but I’ve accepted to have bad results every time Lately and when I had good news for a change yesterday...it seems sort of peculiar...I even convinced myself the lab may have made a mistake ...I think I’m scared to be positive in case it all changes in a few months

I know this seems crazy thinking but we all live in a strange world of mbc fear of Covid etc nothing seems real...like a dream or something

Thanks for your good wishes

Barb xx

Glad to hear your great news! I hope it continues!

Barbteeth
Barbteeth
in reply to kduck

Gosh so do I

Thank you for your good wishes

Barb xx

Hi Barb

Gosh lots of needles but all does sound positive and you so serve deserve it....

I’m still waiting for next steps re. my progression. I had my Denosumab injection last week & I’m currently just on letrozole.

Jo x

Hi Jo

I must say I feel better physically (apart from bone pain) by not taking Ibrance or Afinitor....the anaemia has improved and therefore my energy levels

Make the most of just being on letrazole for a bit....before Ibrance type drugs were available...ladies did well for many years on letrazole

All the best

Barb xx

Thanks Barb - enjoy feeling better.

Jo x

Just Letrozole does well for many ladies for years. Enjoy that it is doing the trick for you.

Blessings, Hannah

That'good news! It seems you had a good response to Faslodex 🙏 xx

Barbteeth
Barbteeth
in reply to Evaf

Let’s hope it continues...I’ve had too many disappointments lately that I’m wary still

Barb xx

So happy things are looking up. I just had my 3rd shot of Faslodex also. I can't take Ibrance because my immune system is still to low. It has recovered somewhat, but not enough. Good luck with the chickens.

Cheers, June S.

Barbteeth
Barbteeth
in reply to 8576

Thanks June...the chicken coop is now assembled and it’s lovely...me and vanessa went to a barn that sells animal feed/accessories and got food ,feeders ,grit etc and we’re fetching the chickens tomorrow...Vanessa is so excited...you’d think she was a little girl still...actually 32 this year!!

All the best to you...hope you’re coping with your faslodex...I’m a bit sore today at the injection site but that’s all

Barb xx

8576
8576
in reply to Barbteeth

I bet she takes after you Barb. Wonderful to have the ambition to raise your own chickens and get the eggs.

I do cope very well with the Faslodex. No discomfort.

Cheers, June S.

Barbteeth
Barbteeth
in reply to 8576

Hi June

The injections aren’t too awful although they do vary...yesterday’s was a bit more uncomfortable afterwards but if it works I don’t care

Vanessa loves animals just like me...both girls had a succession of bunnies guinea pigs rats hamsters budgies and ponies when they were growing up and they both still do have pets ...their husbands just put up with it...bit like mine!!

Barb xx

8576
8576
in reply to Barbteeth

Just wondering Barb. I always have the same nurse. She is head of the chemo suite that does the injections. She is excellent. I believe that makes a huge difference.

She pumps those doses in really quickly. Less than a minute each side. I know they are supposed to be administered much slower but it doesn't cause any discomfort.

Cheers, June S.

we have street chickens, I'm not sure who they belong to, but we are not allowed to have chickens in the city supposedly ... anyway, they come up on my porch and beg for crackers which I always have for them <3 Enjoy your chickens, they are sweet and make good pets as well. will try to post a pic of my "porch chickens" but I don't remember how to post a pic, will figure it out ha ha

Oh how lovely to have feathery visitors!!.. yes put a pic on here

Barb xx

Barb, so glad things and therefore you, are feeling more positive. Faslodex sounds like a good drug for punching the MBC. I know exactly how you feel about the feeling afraid of being too positive, sounds like me. When people say I am looking good I hear myself saying...' thanks, but.....' silly isn't it? This Covid thing is making it all so difficult. Before I was busy organising many voluntary things and doing things, hence the name. Now I feel rather lost and resentful that what time I have feels so unproductive. All my own fault. When I do do something I feel so much better but can't always manage that...daft. All the best, sorry to ramble on! Fay

Congratulations, Barb! I hope this drug will work for you. I, too, am now on Faslodex and just had my second round of shots this week. It seems to be helping with my rib and back pain (L1 veetebra) where my cancer had progressed as of my last scans at the end of May.

Barbteeth
Barbteeth
in reply to Dianne417

Hi Dianne

There seems to be quite a few of us on faslodex here...let’s hope it’s going to help us for a long time

Barb xx

Dianne417
Dianne417
in reply to Barbteeth

Thank you, Barb! I know you've had a lot of long-term luck with your drugs. I hope it continues.

Best,

Dianne

Barbteeth
Barbteeth
in reply to Dianne417

Hi Dianne

Afinitor didn’t work at all for me...took it for only five months and developed a pleural effusion and three new liver mets...didn’t feel well on it either so it was a total waste of time...that’s the problem...unless we try a drug there’s now way we can know if it’s going to be effective at all...whole things a gamble...that’s what upsets me about it...people say ‘oh there’s loads of treatments out there’...doesn’t mean they’ll work though

Sorry I’m being negative here but just saying it as it is

On a more positive note perhaps faslodex is the one for both of us...let’s hope that’s the case

Barb xx

Dianne417
Dianne417
in reply to Barbteeth

Hi, Barb! I'm so sorry to hear about your experience with Afinitor. You are absolutely right that not every drug for MBC will work for every person, but the good news is that there is a broader range of drugs out there for all of us than when I began this treatment journey in Jan 2017. And there are better and more targeted approaches being developed all the time. I'm glad you are into round 3 of the Faslodex shots and still doing well.

Barbteeth
Barbteeth
in reply to Dianne417

I didn’t realise so many more treatments have developed since 2017...I was diagnosed in April 2018 and I know Ibrance had just become available on nhs in the uk

I suppose we should be grateful for the drugs but I wish their side effects weren’t so harsh and debilitating

I remember my first appointment with the oncologist and I was reeling from shock from the diagnosis and she said to view mbc as a chronic illness...and compared it to diabetes....well I find that totally ridiculous but I suspect she was trying to lift my spirits...how can that be so?... I still don’t completely trust her after that

I’ll stop ranting now!!

Barb xx

Dianne417
Dianne417
in reply to Barbteeth

Hi, Barb! I think the hope is that MBC can someday be treated as a chronic disease, and I think we're getting very close to that, but from everything I've seen, we're not there yet.

When I had my first appointment w/the first medical oncologist who treated me, it was my understanding that I would receive two lines of oral drugs and one line of infusion chemo and then I would die, because that's all there was. My longevity would be determined by how long I could last on each drug.

Then, only six months later, my new medical oncologist (who took over my case after my first med onc transferred to a different hospital), told me that she had just returned from a conference where she learned that three new MBC drugs had just been approved in the past year. And I have been told since then that there is plenty to keep me going.

I have been volunteering for trials at the Dana-Farber Cancer Institute in Boston, because I want to do what I can to contribute to a cure. My first line of drugs was Ibrance (100 mg) and Letrozole and I had a very good experience on it for 26 months. It had only been newly approved in the States (Feb 2016) less than a year before I started it and I was well aware that the only reason I had access to this great treatment was because others had stepped up before me for trials, so I want to do my part for the people who will unfortunately follow me. I figure I'm going to die anyway, so I might as well do what I can to make a difference while I'm here.

It is my understanding that the primary reason the current 5-year survival rate is so dismal is because it was calculated before some of these new drugs came to market. Hopefully, as more drugs are developed, particularly for triple-negative women, these statistics will start to change.

Although there is no good time to be diagnosed w/MBC, I think we're fortunate to be living in an era where there are so many new treatments.

Barbteeth
Barbteeth
in reply to Dianne417

Dianne what you say does make sense...I’ve read also that reading those awful depressing statistics is such a waste of time as they’re years out of date and give a totally wrong picture

I’m impressed by your long time on Ibrance and letrazole...I was so disappointed when they failed me...I assumed I would be on those for at least two years

I guess you’re right...this is a ‘good’ time to have mbc...ten years ago it really was a death sentence

All the best

Barb xx

Dianne417
Dianne417
in reply to Barbteeth

Yes, we're not living in a perfect world and, as you mentioned, many of these drugs can have dreadful side effects, but I think that all in all, things are improving.

From what I've read, my time on Letrozole and Ibrance was the median. I know that there are women who have been able to stay on that regimen for four years; I just wasn't one of them. It's important to just keep moving forward to whatever will work next.

Thank you for taking the time the write and engage in conversation with me.

Cheers,

Dianne

Barbteeth
Barbteeth
in reply to Dianne417

I’ve enjoyed our conversation...you’re very much like me and just getting on with life despite the setbacks...I appreciate your knowledge as well

All the best

Barb xx

Dianne417
Dianne417
in reply to Barbteeth

Thank you, Barb! It takes a lot of courage to keep going. I wish you well.

Dianne

Barb,

I have heard good things about just Faslodex. I am delighted that it is doing the trick. I wish they would start on the easier treatments first. Best of luck. Celebrate and we will all be at your house for an Easter egg hunt next spring. Enjoy the chickens! Blessings, Hannah

Barbteeth
Barbteeth
in reply to hdhonda

I think my daughter is going to call one Babs after me!!

Not sure if that’s a compliment or not

Barb xx

😂

Yay! So very happy you've gotten some good news! You've been trampled on for far too long! Wouldn't it be great if Faslodex worked for a very long time? I believe the oral version is on track for approval late next summer. It's supposedly even more effective.

Enjoy getting your daughter set up with her chickens. I've been tempted to build a coop and get a few if the fancy ones myself, but it's just me and I'm not a egg person. Will she have a rooster?

Congratulations again, Barb. Allow yourself to celebrate. The opportunities are too few and far between to miss one.

Andi

Barbteeth
Barbteeth
in reply to Arisgram

Hi Andi

Thanks for your kind words

She’s not having a rooster ( we call them cockerels in UK)... just ladies!!

Barb xx

That is good news about your TM’s being down and by 400. That sure seems like a lot. You should feel good about that, have a second Italian beer to celebrate.

I think having MBC makes us all sceptical. I try to just take life one day at a time now, it is too scary to look too far ahead and start thinking about what if’s.

We are like pin cushions sometimes with all the different tests and needles. I have really bad veins so my blood draws are always an adventure each month. At my hospital they are now requiring us to go in for a Covid test each month prior to starting our next cycle of treatment. I am in Ontario, Canada. Not all cancer centres are doing this though.

I hope that you will have success on the Faslodex for a long time and that your markers keep going down. Have fun setting up the chicken coop 🐓.

Barbteeth
Barbteeth
in reply to Valisa

Hi Valisa

You’re the First Lady I’ve heard of having a Covid test...in the UK I find my hospital a bit casual...I had to ask for a mask yesterday and the nurse seemed surprised...I felt as if I was being a nuisance...I guess our Covid risk has reduced but even so!!

My veins aren’t brilliant either and now I have lymphodema in one arm it limits the choice somewhat...what a life!!

Yes I was pleased about the drop in markers but still feel it won’t last

Barb xx

You weren’t being a nuisance ... I had a positive experience (see below), which should be the same for everyone x

Teddielottie
Teddielottie
in reply to Valisa

I haven’t heard of any NHS hospitals in the U.K. requiring a Covid test before starting a new treatment cycle , but I wouldn’t mind it !

I was satisfied, however, with my local hospital’s Covid procedures last week ( I had to go there for a one-off ,to my chemo ward , for my monthly bloods ).

At the entrance to the hospital everyone entering was given a face mask and had their hands sprayed with sanitizer by a hospital employee . Then on entering the chemo ward , alone , I had to wash my hands in a sink by the entrance door, in view of chemo staff, and then had to use their sanitizer after. As usual the chairs were being thoroughly sanitized between patients.

Then on leaving the hospital , the same member of staff sprayed sanitizer on our hands as we left the hospital building .

So I felt much safer ,

than I had expected ...though the chemo ward was getting quite busy now , after a lull in numbers over the past three months . x

Our hospital screens every patient entering, they make you sanitize your hands and give you a mask. They have an amazing group of volunteers making cloth masks.

The Covid test is to ensure I not start treatment with a compromised immune system if I had the virus and also to ensure the safety of all other staff and patients in the cancer clinic. It’s a bit of a pain but an added security.

My husband has to go for a test in order to visit his mother in long term care, our seniors in long term care were hit very hard by the pandemic. He has not been able to visit her for over 3 months, and now only one outdoor visit, by one family member only per week. He is from a family of 8 so he has to que up within the family for his turn to visit.

Take care, hope to hear more promising results from you again soon. 🤗

Sounds like good news to me. 💐

Barbteeth
Barbteeth
in reply to Kimr2081

Hi Kim

Well I’m trying to think that...had so many set backs it’s hard to think this could be a turning point for me

Thanks for your nice reply

Barb xx

Kimr2081
Kimr2081
in reply to Barbteeth

I get you Barb. I will tell you that the first time the cancer should up again I was on faslodex for 11 years. Boy did I think I was in the clear until it raised its ugly head in 2017 and since then I have been on a number of treatments. Ugh. As you are too just trying to take one day at a time. 💕

Great news !

it makes the heart happy to read your content. i hope you are physically and emotionally well and celebrating you. though not receiving Faslodex, i can relate to your sentiment about the dosage schedule; i am grateful for the quarterly Lupron injection, rather than monthly. be well!

Barbteeth
Barbteeth
in reply to hctrojan

Thank you so much...we do have a lot to put up with and it’s forever!

People often ask me when my treatment will finish and I have to tell them that...they sometimes still don’t get it...that’s why this site is so brilliant...whatever anyone is going through there is someone who has been there and understands

All the best to you

Barb xx

hctrojan
hctrojan
in reply to Barbteeth

i receive the same question about when treatment will finish. when i reply, "treatment is for life," the person seems perplexed and will often say, "you're ok or it's gone?" i repeat what i stated when they asked, or say it's 'terminal.' i concur about this site, and a few others i partake in, as our metavivors understand.

Barbteeth
Barbteeth
in reply to hctrojan

So true

Barb xx

Brilliant news.....keep strong AND positive

Barbteeth
Barbteeth
in reply to StE72

I’m really trying!!

Thank you

Barb xx

Sorry. Pollyanna here! I am not buying that "forever" stuff. Forever is a long time and remember there is always the chance of a cure on the horizon. New drugs on the way and with each one perhaps we will win.

Wasn't it the British that used to say "Chin Up, Shoulders back". I know it isn't easy. Especially when pain and fatigue come. I am there after more than 10 yrs. At the moment it is incurable but I think help is on the way.

Cheers, June S. (who else??)

Barbteeth
Barbteeth
in reply to 8576

Yes chin up and buck up darling lol

Barb xx

Not always possible but nonetheless good advice! My chin was hanging pretty low while on the Ibrance for 3 weeks. But now it is back up! Wishing you well, as always,

Cheers, June S.

Glad for good news 🙂

Really happy to hear your news Barb...400 points is a great drop, however high they started. Enjoy the summer, enjoy those chicks and eggs and get back in the saddle!

Patty

Barbteeth
Barbteeth
in reply to MacroMom

Thanks Patty

Kind of you to think of me...hope all is going ok for you

Barb xx

This sounds like good news all around—lower tumor markers, less frequent appointments and chickens to boot! Hopefully things stay calm and simple like this for a good long while. You deserve a break.

My Onc also said that in some people tumor markers are a better indicator than others. He said mine seem so accurate that he’s happy to let me do scans less often unless there is a change. Hopefully that will be the same with you.

I thought of you today—my Onc keeps joking that I have had enough Xgeva to fall off my horse. And today I unwittingly tested the theory! I came off pretty hard after a jump and landed flat on my back—nothing broken , thank God. Never a dull moment.

Hope the heat subsides soon for you. We have been seeing photos of your crowded beaches on the news. Not great for Covid.

Barbteeth
Barbteeth
in reply to Pbsoup

Oh no....glad you’re not badly hurt....I don’t jump fences any more although I used to love doing so...I wear a hitair vest as well

Six months before my diagnosis I went on holiday with some other women ....we took our horses to Lincolnshire where there are lovely sandy beaches and we had a cottage and paddock...anyway I had a nasty accident due to a tractor (long story) but ended up in the bottom of a deep dyke with my horse on top of me...looking back I don’t know how I didn’t break loads of bones or die...I did have a fracture a few months later which is how mbc was diagnosed and it was extensive through most of my skeleton

I can imagine how appalled you must be to see how the British are behaving on beaches here....I despair of people...they’re so thick it’s unreal....the pubs are opening on July 4th ....it will be carnage...they’ll be getting drunk..ignoring social distancing etc....I’m dreading it they’re worse than animals

I can just see us back in lockdown....such a shame as Covid cases have fallen rapidly so they think they can carry on as before

Barb xx

Pbsoup
Pbsoup
in reply to Barbteeth

Trust me there are plenty of Americans behaving like total dolts. Including our president (sorry ladies who support him). If folks would just wear masks and follow social distancing life would be better for everyone. Where I live, in San Francisco, we have not been too badly affected but some state—ones where people are less careful, are being hit hard a second time. So sad for all.

People think they’re indomitable And don’t need to take precautions to help themselves and everyone else. I guess we MBC ladies are in on the secret that that’s not true.

The world is an interesting place right now.

Barbteeth
Barbteeth
in reply to Pbsoup

Also those stupid Brits crowding the beaches left their litter behind as well (obviously not all) but I really despair ...the beautiful beaches looked like a rubbish tip....ugggg

Barb xx

Great news Barb.

Sounds like you are feeling better in yourself as well.

Buggy will be pleased

Clare x

Barbteeth
Barbteeth
in reply to BellaE

Thanks Clare

Regarding Bugsy...I suspect he’s just as happy eating grass all day and not being ridden!!!!

Barb xx

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