I want to express my thanks to you all who have helped me through the last few days...without you I think I would have gone into a deep depression
Had my transfusion Friday...took 4 hours!!... thank goodness I had a book to occupy me...not sure if I feel much difference but I did do a yoga class online yesterday and went for a walk by the river Trent where it’s flat so I wasn’t breathless
I shall go to see Bugsy and decide if I’m riding him when I get there
A question..have any of you ladies been on Faslodex injections only and how long did it work for you?
I know it’s usually taken together with Ibrance but I’ve already had that
Barb xx
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Barbteeth
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sounds good! I think you will do great on the Faslodex; good info from Jade who said to give it a little time to work! Off the subject, doctors and hospitals are really hurting over here financially; my friend went to the ER in Dallas, the 3rd largest city in the U.S. and she was the only one in the ER! She was having chest pains, no COVID symptoms, and they still made her hubby wait in the car! Turned out to be shoulder pain. $10,000 bill and all they did was give her 4 baby aspirins! A cardiologist called my hubby for a telephone appt. and asked him to come in and get his heart shocked, his heart is in rythym and he hasn't had any chest pains, we were like, "no, thank you". Do they think we're stupid? The first time he was in hospital for an afib attack, they were going to shock the heart to get it back into rhythm but it went back on it's own and I remember the nurse saying that was good because getting a shock was dangerous. Said all that to say this, be prayerful and wise about what you allow to be done to you in the way of testing and procedures because hospitals are hemorhaging money. God bless you and heal us all in Jesus name, amen! Happy Weekend! <3 xo
Thanks to Hod that you are feeling better, Faslodex takes few months to work because it is given once per month
God bless you
I am so glad you are feeling better Barb. Bad news really takes all the good out of you both physically and mentally. You need to allow yourself to mourn as that is really the way we feel. Then we get back up and get back at it. Your walk sounds beautiful and peaceful. I’m sure Bugsy was excited to see you.
Oh it made my day...I know he’s only an animal but there’s something about horses that melts my heart...always loved them since I was a girl...no idea why as nobody in the family is like that...I do have Irish blood though which could explain it!!!
Oh I love dogs but never had my own (hubby!!!) at the stables we have a new litter of German Shepherds...7 of them they were born on Thursday...so cute so I still do have lots of friends with dogs so I can indulge now and again
Those puppies would be adorable. I fostered dogs for several local rescues when I was healthy. That is why we have three dogs lol. It’s hard to say goodbye to them. I really miss fostering. Animals make much more sense than humans.
I agree Sarah. They are amazing. Just the way they bond with us, even though we are so different to them. I used to raise dogs and did a lot training and teaching. Luckily, I was able to get to a lot a seminars with people like Jobe Michael Evans from Monks of New Skete and a Doctor of Animal behaviour from California. (his name escapes me at the moment) We learned so much about behaviour and good training methods without the use of force. I developed a whole training program on what I learned from them.
I have a niece and her husband who do Lab rescue. Such a lovely couple.
Yes, it is good news Barb that you are feeling better. I envy you your wonderful relationship with your horse. Animals have wonderful instincts for showing that they care. That whinny said I love you and I have missed you. So I am happy to hear that you can be with him again. I never learned to ride. When I was a kid I tried to ride horses but they always tried to buck me off so I just became an admirer and not a rider. You are lucky to have a horse. Many of you wonderful warrior ladies have dogs and they are also truly our friends. Stay well. Hugs Marlene
Happy to read you are feeling better...animals really are the best medicine/therapy. ❤️🐴 And I just love your British expressions like “Knackered“...I’m going to use that with my English friend she will be so impressed! 😜
Haha...yes we do have some funny expressions especially in different regions...my family are Geordies...from Newcastle area...I live in Nottingham but still come out with words nobody understands...still have my accent as well
Just rode Bugsy this afternoon and went further than my usual rides...over the pit tops at Bestwood which is where Charles 11 kept his mistress Nell Gwynne...it’s high up and in the distance I could see Newstead Abbey home of Lord Byron....it’s very historical around here...we’re not far from Sherwood Forest as well but obviously Robin Hood isn’t real!!!
Hi Barb. I’m glad your time with Bugsy did you good. I was on Faslodex only for a couple of months before I started Ibrance and like Jade, my tumor markers went right up (almost double) before they started going down. Aside from the monthly discomfort of the butt injections, I didn’t experience any side effects. Maybe just slight fatigue the next day after the injections but nothing more. I wish that Faslodex will work for you as it has worked for many of us. Keep safe!
Thank you for that...do you still take faslodex together with the ibrance?
From what I’ve read faslodex works differently to AI hormone drugs so I’m hoping that will have a positive effect
When I had a good run on Ibrance/letrazole combo I began to feel a bit complacent thinking I’d be fine for many years and when it failed it was a shattering experience and now 5 months later I’m starting my 3rd line of treatment...can’t get my head round it
I switched to Letrozole for now because I can’t get to hospital for my injections. When I eventually get to have my blood test and if the results show that my tumor markers are up, my onc says I have to go back to Faslodex. I am still on Ibrance with Letrozole (for now)
Hi Barb: Glad you are feeling good. I was on Faslodex alone for two months because of Ibrance lowering my immune and then because of pending surgery. It seemed to work. Not much progression if any. I didn't have any side effects from it.
Not sure if this info will help. I thought going Faslodex alone but the cost was the problem.
Hi Barb, I'm happy to see your spirits have picked up. I've been on Faslodex and Arimidex for 6 years now. I don't think it's common to go for so long, but for me it has worked. I'm hopeful you'll see the same kind of results.
Here's the thing. Faslodex and Arimidex both do the same thing. I view it as doubling down. So with that said, I think that you might be pleased.
I also get Xgeva monthly. I know that everybody says that's too much but I started that before they decided to lay off of it, and I've been so fortunate on the combo, my onc and I decided not to change it. It's an odds game that I'm playing (necrosis of the jaw vs. cancer progression).
Barb--you will appreciate the humor in how after my third round of Xgeva, my Onc. gave me permission to fall off my horse as my bones can apparently handle it. I suggested that I would prefer not to test that theory, thank you very much.
He also said that Faslodex is very effective--I came to him from a different oncologist who already had me on Arimidex, so he said he would keep Faslodex up his sleeve as the next course of treatment. He considered changing me sooner, but as I am doing well thought it good to have something standing by in the arsenal. I know everyone is different, but thought I would throw that out there.
Back to horses...I read a study recently that horses absolutely recognize their owners faces, as well as moods. It was a British study that involved showing horses photographs. Really interesting. And in Norway, researchers taught horses to indicate whether or not they wanted to be blanketed by pointing at symbols on the stable wall.
That’s interesting about faslodex...it seems there aren’t many ladies having these injections...maybe it’s not used so much now Ibrance and similar have taken over
I read that about horses recognising their owners faces...I’ve always thought that...I had a horse who recognised my car and as soon as I drove up he would gallop down to the gate!!
Okay, here we go! When I was first diagnosed with MBC, I did everything -- organic, no sugar, no soy etc. When I asked my onc (who's known world wide for his MBC research) about this, he said basically "Eat enough good stuff to stay healthy and fight this thing, but don't go crazy denying yourself. The science doesn't show it really makes a difference. Excercise does." So, I'm the poster child for a bad diet. I have a Coke everyday. I just love the stuff. And I eat really mostly anything. Especially cookies. I eat way too much sugar.
I do walk my dogs 3-4 miles 4-5 days per week. That helps with achy joints. I also take 3 different mushroom supplements and a lot of other supplements as well. My onc's view on the supplements is they won't hurt me, the science hasn't proven they help, so I shouldn't go broke buying them, but take what you want. I do run all of them through him as there are some that are not good for us. Mushrooms are fine.
I honestly think it has a lot more to do with genetics than it does with our diet etc. I will also say that the test on my initial tumor was 90% Estrogen Receptor positive (strong intensity) and 30% progesterone positive (weak intensity). I don't know if the 90% ER positive has helped me to remain progression free for this long on only hormone blockers.
I do think that I have been crazy fortunate to have had such a good run and can only hope it continues. My scans are next month and I do still have scan anxiety.
And especially important is to do things you like to do, whatever that is.
Dear Barbteeth , I am here too for your journey. You made me feel welcome when I first joined this group a few months ago. I’m still trying to gain some footing over this nightmare and see how even someone so experienced can feel overcome with emotion. We are all human after all. I will do my best to be brave and know it’s ok to fall when it is overwhelming. I will be here to catch you too.
I’m quite good at putting my feelings on the back burner...maybe in denial?... this works for me most of the time but last week was too much to deal with I’m afraid...however the transfusion combined with lovely weather has definitely improved my mood
Hope to start faslodex next week when it’s approved
Kim you’ve cheered me up...was it on its own or combined with another drug?
I’ll be chuffed if it works for one year
You have done extremely well...I’ve only stopped the Afinitor exemastane combo for 5 days and I feel so much better ( I appreciate I had the transfusion as well but those drugs were so hideous).. just to feel more energetic is wonderful
It was the only thing I took. This was the second time the C showed back up. Now I’m on the third time and have been on so many different treatments in the past couple of years. I am on Taxol now. Hoping it’s working because i sure didn’t like losing my hair again. I know that sounds vain. Waiting for an approval for MRI to see how we are doing. I hope the faslodex works along time for you with no side effects. 🌸
Yes I’ll give it a go...you’re one of the few ladies who seem to have done well on faslodex...the nurse I spoke to the other day said there’s a lady at my hospital been on it for four years so I may be lucky
As for the hair thing I’m also vain and feel guilty for being so...my hair is long and blond ( with help from hair colour and extensions) but I’ve always had long hair and the thought of being bald is awful but I know it’s trivial in the whole scheofvthings...I have a friend recently diagnosed with TN and she carries the gene...she’s lost her hair but wears wigs but when she goes to yoga just marches in with her bald head and doesn’t care....don’t think I could do that
I wish I had the guts to just be bald. At least with this virus I can’t really go anywhere so I am just bald at home. Hang in there and keeps us posted on how it goes with thr faslodex. 💛
Apparently there are some really good natural looking wigs around...the bloke who does my extensions may know where I could get one if it comes to that...I imagine they’re uncomfortable in hot weather...I would need one that could fit under my riding hat....don’t want to scare the hell out of Bugsy!!!... trying to see the funny side but it’s hard!..what a life
Looking on the bright side of Covid 19 at least you can just hang around the house and nobody to judge or comment...I think it’s the looks of pity that people give you...I know in the past when I’ve seen a bald lady I’ve assumed it’s cancer and she’s really ill
The Faslodex and Ibrance combo aren't covered here in Canada. So the cost would have been $832.00 per month. I am fortunate that my oncologist was able to get the cost removed on compassionate grounds.
I did start on it end of November but Ibrance was dropped because of low immune. However, Faslodex was continued until after my surgery in January. Then we decided it was just too costly for us to absorb. Yippee! Now I don't have to pay.
Yes Tara...I ride my horse as often as I can...I’m now more of a ‘fair weather rider’ now I’m older...I avoid very windy weather as my horse can be a bit skittish when stuffs blowing around...one of the lanes I often ride down has a house at the end and they put tons of Union Jack flags up for VE Day so I took him past those and he was terrified and shot off!!!...silly boy...I do wear an air vest for if I come off
People are always trying to stop me riding and telling me I’m too ill or I shouldn’t risk coming off etc etc....as you can imagine how I react to comments like that!!!
So jealous. I love horses. I went to horserding camp as a child with Girl Scouts. Spent two weeks every summer learning everything about horses. It was such a cool experience for a poor kid from the city. I am horrendously allergic to horses or would have continued with them.
Aww so happy he has you to understand his nuances
People have said stuff like that to me about skiing since my diagnosis. There was a 90 year old woman on a ski lift with us once and I just keep saying -- that will be me! My husband gives me a look and I say it will be him too haha.
I’ve skied a few times and loved it but it’s a lot of hassle and expense as we have to go to Europe and if the weather or snow conditions aren’t good it’s very disappointing...I learned to ski in very icy conditions with hardly any snow...fell down loads and I was 3 months pregnant!!!... bad planning or what
I’m pleased you had some horsey holidays...have you ever galloped along a beach?... that’s the most exciting thing I’ve ever done...I shall continue to ride until I can’t or I don’t want to
I get quite tearful when I see old people living their lives especially the couples as I feel that I’ve deprived my hubby of that as unless a miracle drug comes along then I know I won’t live to be very old...I know I should be positive but I’m afraid I’m realistic...on a positive note though I’m not going to end up stuck in a nursing home...
Sorry I sound gloomy...didn’t mean to be...I also look at slobs waddling down the street eating rubbish or smoking and I feel resentful and cross because I have mbc and they don’t...no matter how hard we try to be healthy there is no guarantee that we can avoid mbc...totally random
Glad to hear you are feeling better now.i was on flasodex for about 3 to 4 months but the oncologist took me off them after my pet scan. Stay well Barb take care.
Barb, I am glad hearing from us could help ♥️ I am so sorry about your progression. You might want to check out a private facebook group - I get alot of loving support from he ladies there. It is called NBC EOL/QOL Issues let me know if you have trouble finding it and I will get the exact title to uou correctly. The admin of the roup is a woman with school age children, she has had MBC for 11 years. The ladies are loving, accepting, non-judgemental and can often answer questions knowledgably.
I'm just catching up on this post...I'm glad you're feeling better and have been spending quality time with Bugsy!
I've been on Faslodex in combination with Ibrance for 20 months so far. This is my second-line treatment following Letrozole + Ibrance. I know that the Ibrance is probably not adding much value at this point since I "failed" on it in combo with Letrozle, but I still take it just in case...
Good luck with it!! I'm pretty sure I read on this site about someone taking Faslodex for for nine years (!!!) and maybe counting (?) as a second line treatment after four years on Letrozole, if I'm not mistaken. I might be sketchy on the details, but I found it very encouraging...
Hi Barb, I have read so many of your posts and have been touched by how caring and supportive you are to so many. Your messages give a lot of comfort and it's wonderful that you take time to help others in this way, given what you are dealing with. I know that you've had a huge number of replies to your last message and I don't want to load you up with more, but I felt compelled to make contact. I have mets to my spine, pleural cavity and liver. I was initially on Letrozole and Denosumab and my tumours showed a clear response. However, after 8 months there was progression and Letrozole was replaced with Faslodex and Palbociclib. 5 months later there was progression and I have been on Capecitabine only since that time. I wasn't overly happy to start chemo and I know that you want to avoid it so I wanted to touch base to let you know that my experience hasn't been too bad. I am able to function normally and can still travel regularly from Zealand to Australia to spend time with my beautiful grandchildren. The good news is that my latest scan showed that most of my tumours have shrunk and those that haven't shrunk have less activity. Chemo is giving me more time and I am so grateful for that. Yes, some days the side-effects slow me down a bit, but most of the time I am enjoying life and I'm so happy to still be here. With best wishes, Jan
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xo
Thank you for the welcome
Thank you for your support!
