I’m new to the forum and not really used to it yet. I have MBC and have had it for 3 years. I am doing very well at the moment on Ibrance and Anastrozole ( for 21 months) and just try to get on with life as much as I can. I can potter around my house and garden, playing with my dogs, baking bread (a new COVID skill) walking for miles in the sun and enjoying life. The only blip is waiting for CT results- I always dread those even though I feel good. It’s that unknown quantity, that little uncertainty I hate. We all live with this don’t we?
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Lulusue
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Welcome to the community, I think/hope you'll find it incredibly helpful not only as a source of great info/perspectives, but also support, if needed!
It's great that you're doing so well on your treatment! Congratulations on that!
And I am in complete agreement about waiting for scan results...for me that's the worst time (well, aside from the 20 minutes inside of the machine...claustrophobia)! I hate the not knowing, which kind of doesn't make sense since I/we don't know prior to the scan so why is it so difficult between the time of the scan and the readout? I think it's because after the scan it's actually known...just not to me!
I'm hoping for a good report re: your scans! Please do keep us posted!
Thank you so much for replying. Everyone has been so lovely-I got quite emotional and feel like I’ve found somewhere to belong. Scans are just awful- I loose all rationale waiting for results. I don’t sleep or eat and can’t seem to settle until I know. God forbid the consultant calls me late! I had a CT assisted biopsy in to the bone of my shoulder last year- really,really bad procedure. Think that has been the only time I cried throughout all of this madness.
Curious. I had my CT scan yesterday. I lay down and once the tech leaves the room, the machine said breathe in and hold your breath and then I go into the machine, then it comes out and says breathe. A few seconds later, I repeat the above. This goes on for three times and I am done. I never open my eyes bc I will freak if I see how close it is to me. Because the breast cancer cells are in my lungs, the hardest thing is to hold my breath while in the machine. Do you stay in the machine for a full 20 minutes?
Welcome to this wonderful group. The ladies here are so friendly, caring, sincere... they are just awesome!
I’m sorry you are here though. I’m so glad you are doing so well on your treatment. News like that is so encouraging. I hate the anticipation of scan results too along with trying to figure out what any tiny little ache or pain might be. This is one of the benefits of being a part of this group... more than likely someone else is dealing with something similar.
I learnt a new word- so glad I’ve not lost my mind! Xxxx
Hi Hazel,
Welcome to this site! It's good news that you are doing so well three years in to treatment. We can all relate to the fear and uncertainty around scan time. I get nervous on results day. It normally hits as my name is called out and I'm led into my oncologist's consulting room. I try to stay calm and maintain a positive attitude and that really helps.
I am new to the forum also, and trying to get used to it. I was diagnosed in Nov. with MBC (it is in at least one lymph node) and have been Ibrance and anastrozole also. I had a large tumor, 5 cm, that I felt in Oct. ‘18, but then was hospitalized with a severe case of Guillan-Barre’ Syndrome for 13 months, and before I was able to do anything about it, it was 5 cm. in one dimension. It has shrank to about 3.5 cm in that same dimension and medical oncologist woukd like me to stay on the hormone therapy until the beginning of the year. I have wanted to have the tumor out of me since it was diagnosed 9 months ago. Will be having a lumpectomy and breast conserving surgery, followed by 6 weeks (M-F) of radiation to the breast and underarm area.
I have been lucky as I have not had ANY side effects from my treatment, except, maybe, feeling tired in the afternoons. (Not sure if I’m tired or bored due to the quarentine, actually!)
I find it very helpful to read what the other nice ladies have posted. It IS nice to have people that know what it feels like to have been told that they have cancer. I am hoping for the best! Receiving treatment at Stanford Cancer Center, in the Bay Area of California.
Keep on doing what you’re doing.... enjoying life the best that you are able!
Mine was large too, 11 cms and after chemo down to 2 cms. I had a mastectomy on one side but no reconstruction as they thought I would need radiation. Haven’t had any of that yet as they don’t think I need it.
I also get tired in the afternoons but there is nothing wrong with a little nap.
Please let me know how you get on with the planned procedures - I hope you get through it all with flying colours!
Thank you so much. Oncologist wants me to stay on it until the end of the year, but I am wondering if a lot mire “shrinking” will happen in the next 3 months?
I am on California.....where do you live Hazel? Just curious “where” I’m talking to!
I am in Nottingham UK. So wish I was in California though- bet you have better weather than we are having at the moment.
Did you have any intravenous chemotherapy or go straight on to Ibrance? I am sure there is a big difference
in treatments between the USA and the UK. I think the biggest shrinkage in my tumor was in the last month of intravenous chemo, it sort of collapsed on itself. Didn’t really touch the bone mets. The smaller the lump, the smaller the surgery. Like you, I have had very few reactions to being on Ibrance. I have had a few reactions to the Anastrozole- aches, deep muscle pain, neuropathy in my feet and crying eyes but all in all , I feel good.
I so hope it all goes well for you and at least you can get Christmas over with before surgery- always a bonus!
I have VERY good friends here, that are from Sheffield originally. They LOVE Nottingham ❣️
I had Guillan-Barre’ Syndrome, so my doctor went straight for the Ibrance and anastrozole. THAT is where I get my “crying eyes” from? Yes. The smaller the tumor the smaller the surgery. I wanted the thing OUT as soon as I knew about it, but that is not want the oncologist wanted to do. I have really good doctors, so I put my trust in their hands.
We were REALLY HOT.... 100 Fahrenheit, but have cooled way down.
All my best to you, and all of the ladies here in our forum.
Colleen
Hi Lulusue, it’s so good to know you are doing well. Modern medicine is a marvel.
I was diagnosed with MBC 18 months ago to bones and lungs. I had Breast Cancer 2013 and got the all clear in 2018. A few months later I was diagnosed with Stage4 MBC.
I’m on Letrozole, Ibrance and a Denosumab injection (bone strengthening drug).
I have a scan every 4/5 months which I feel is a little to long to wait but I think maybe there is a delay now due to Covid. There is nothing more tormenting than waiting for results. Even blood results before treatment. I think we all go through that fear but what helps in reassuring me a bit is that there are so many different treatments now.
We have an allotment, no garden. That occupies so much of our time and I feel secure there as it’s gated and locked and only like minded people go there.We live in an apartment in Liverpool City Centre. We have a lovely view towards the river and the Albert Dock. There is so much to do in the City (when it’s open) and the coast is just a ten minute drive away.
I don’t always feel like doing anything but that’s not unusual, apparently, on these drugs but I’m so pleased I can take them. The NHS have been so helpful.
It’s great you can walk, enjoy your garden and baking. I have taken to making cakes and pies, I’m haven’t tried making bread......yet.🥺
Keep us all posted with your results. The ladies on here are lovely. We are going through this journey with each other and with great helpful tips etc.
Hi Lulusue: Welcome. I echo what all the others have said. It’s great to be with others who know what we’re going through and have the opportunity to learn, listen, care, and help each other on the MBC journey.
It sounds like you're doing great and that's wonderful to hear. Love hearing success stories. I'm in my 42nd cycle of Ibrance and letrozole and also doing well. Apparently, when this drug combo works it really works. I agree about waiting for results - ugh, the waiting! With all the modern technology why can't we have them before we leave the scan site?? LOL
Is that one of your dogs' pictures? Adorable! I'm a dog mom, too, although we only have one right now - he's a very eccentric Golden Retriever/Great Pyrenees mix. Our pitbull mix died in May so when I'm done mourning her, we'll get another.
Thank you for your kind thoughts, I love this group already!
The picture is my little ‘princess’ a Pom/Pekingese mix. I also have Dylan, a Pom/ pappion mix and an Anatolian Shepherd weighing 60kgs. We walk for miles in the countryside when the weather is nice. Do we ever get over loosing a dog? They are so special but you will know when it’s time to get a new one- has to feel right.
We do sound like we are on the same track. It was a shock when I found out- I never get sick! Hadn’t even sen my doctor for 10 years before this. As my boys say ‘ Go big or go home’.
I’m sorry to hear there is some progression in your status. Luckily there are other combinations and treatments- we are on the cutting edge of drug development and surely it can’t be long before they find something that is guaranteed to blow it out of the water!
Welcome, although I am sorry you need to be here. Like Sandra I was diagnosed de novo in November 2018 with mets to bones and a fracture to my back. It was a huge shock and nothing was found in my breasts. I am stable on the lowest dose of Ibrance (75) due to low neutrophils, Letrozole and Zometa. My last scans were delayed due to Covid (6 months) then I had to wait three WEEKS for the results!
This is a great place to come with all the best MBC women.
My daughter is trying to convince me to get a Pomeranian but we move too often to have a dog.
Well, let me join the chorus in saying welcome. I have found this group to be amazing and a great source of information and assurance. I am on Ibrance 75mg. and Faslodex. Just trying 2nd round of 2 weeks on/1 week off treatment. Seems to be working. Just had scans and had generally good results. I agree that we have lots of treatment options ahead and on the horizon of new drugs being developed.
Nice that you are doing so well. Wishing you more of that.
Today a cousin, (born in Ireland) is coming to visit. We used to visit more often and talk all the time on the phone but now it has turned into an annual visit. Wasn't sure what to make for lunch as I can't do a lot of cooking/baking/serving. Then decided happily decided to order a High Tea package from a local Scottish/British Tea room. Very easy. Getting out my good dishes and picking up the order.. They do a very nice job. Even includes Buckingham Palace Tea bags to make the tea. So easy for me and a treat for both of us.
Thank you so much for the welcome. Can’t think why I did not think to order in when the in-laws came this weekend! It would have been so much easier! Next time ............
I am on my 21 round of lbrance 125mg, with Anastrozole and I wish I had found this group on my first one. It’s so nice to not have to explain anything.
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Made it Switzerland to see my son!
New oncologist
