Ibrance, letrazole and Denocumab seem to be working for me for the time being.
On Friday I went for my monthly check up after having my annual tests.
My bloods were fine. My delayed bone X-ray, and my CT scan shows that I’m still stable. In May it will be the 2nd metaverssary of my diagnosis. So, even with having lost my love in May last year, the grief is still dumping some days and, just rolling gently over me on others, and a lot going on with life, I am still in good spirits. I would love to fulfill some of my travel wishes.
And I would say that life is really very good but for the tiredness and the chronic pain. But I am not disfigured, I have all my limbs even if they don’t work so well as when I was younger, and I can taste food, smell things, and see and hear. Really. I am very lucky. I do believe that. Not just being a Pollyanna.
Also, I am loving crocheting. So does my daughters little dog love crocheting!
And I’m so thankful to have all of you here.
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Timtam56
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I’ve been fed up with myself for not being able to do what I used to before mbc...went swimming this morning and could only manage 10 lengths with stops in between and it made me so frustrated
However reading your post cheered me up...at least I went swimming can do short (on the flat) walks and have little rides on my horse if someone helps me get him ready so I know I should be happy with that...but I’m afraid I’m not!!
So pleased you’re still stable...I got 18 months on Ibrance/letrazole and I’m still disheartened it wasn’t longer
Great outlook!!! Glad you are stable! Glad the dog enjoys your handiwork too 😊! ❤️🙏❤️🌈
TimTam! What great news to wake up this morning! :). And "wow!" re: that crocheting! 🧶I wish I had the skills to make something...anything!
So happy for you, and glad that you are feeling upbeat, especially after the year that you've had.
Wishing you many more years of good scans!💜
Celebrate! I'll toast to you this evening! 🥂
(yes, I downloaded an emoji keyboard so that I could spice up my responses! 😎)
Lynn
I am on the same treatment and have also started to crotchet again. I am new to the site and loving the comments. It’s really helping me along. I was diagnosed Dec 2018. Best wishes
Hi Chris,
I'm glad that your treatment is continuing to work so well for you. That is good reason for joy and celebration!
I love your crocheted rug and the dog is really cute! I wish I was "crafty" like that. But I get fed up of hemming trousers, so I don't think I would have the patience to crochet. That's a great skill to have.
Timtam congrats on the good results! I don’t know how active you are, and obviously pain is a deterrent but if you can manage some walking, even short walks at least once a day it will build your core muscles and should help alleviate pressure off your spine mets as a result. IE. Stronger core supports your spine, hence less compression - does that make sense? Also make sure when you sit that you have very good support behind your back, and lastly, putting a cushion between the legs (if you side lie) to take pressure off your pelvis/hips while you sleep. I found doing these things really helped me when I was in pain. Rest when you need to but also just try to keep up some regular movement.
Yes. These are all great reminders for me. I have become very sedentary since my partner died. Choosing not to go out much and staying at home alone. So I have jus this week started walking again. Although it’s pretty hot and muggy here in Melbourne at present. And I’m not much of a hot weather person. But off I go now for my walk to the tram and meet a friend for coffee. Then I’m going to walk some more and take myself somewhere nice for dinner tonight. Walking as much as I can 6000 steps yesterday. 11000 the day before. And 6700 the day before that. So. I’m building up to doing my days a bit better.
Just about to book myself a weekend by the coast on our “great ocean road” so I will want to go for some nice walks on the weekend. It’s happening. 🤪
I’m sorry, I didn’t realize you were dealing with the loss of your partner too. That’s hard, I know it takes time. But I’m really glad to hear you have been getting back into focusing on being more active. Sounds like you’re doing a great job building it slowly but surely! Have a great (if hot) evening and I LOVE the Great Ocean Rd. It never disappoints.
I have not been to Austria but I did make it to Australia in 1974. It was a wonderful trip and my partner and I stayed at a commune in Nimbin in New South Wales. It is so long ago but I loved the country and have sometimes wondered why I didn't stay. Hugs Marlene
Oh that part of Australia is so beautiful Marlene. I don't get up there much. I'm from Melbourne. But it was my partner's and my dream to take of in a campervan and do as much of Australia as possible.
So as soon as this lockdown is over, I am off.
I've bought a little campervan, and I'm getting a little dog in 6 weeks weeks time. so we will travel together.
Tomorrow is the 1 year anniversary of Matt's death. So it's all pretty pronounced at present. Just makes me remember how quickly time goes. We have to do everything we can while we can!
So happy for your great results and long may they continue ! Enjoy ! x 🤗
Congratulations on the great scan results. Stable is awesome. (The dog is adorable). You crocheting is lovely, I wish I remembered how to do it.
Do you take anything for the pain? You shouldn’t be suffering, ask your doctor for a prescription for something. It has made a great difference in my daily life, being pain free.
Yes. It’s strange huh? I’m on slow release oxycodone/targin 7.5/15mg. amatryptoline at night. 2xPanadol osteo morning and night. And I take oils! Not really legal here. But I get ‘em. And I take ‘em.
I know. Right? I shouldn’t be in pain. Many of you here, and some of the women I’ve met at a mbc group here in Melbourne tell me they are not in pain! So what is going on? I think it depends on where the Mets are. If they’re pressing on a nerve or not. I have them in my hips, ribs, spine and skull. There are also “some lesions” they have told me, in my lungs and liver. But they don’t seem to know if they are cancer or not.
I’ve made an appointment to see the pain management team at my hospital. So we will see.
I am not as knowledgeable as some of you here as to my exact situation. But I manage by just taking it easy. If I’m tired I rest. And really. I expect to feel some pain I guess. So I don’t let it get me down.
I had so much pain before my diagnosis I was unable to move. It hurt so much I couldn’t even cry as it made it worse. My doctor told me to take Tylenol 🤬 as she thought it was a Labral year in my hip. I didn’t even know I had breast cancer Until a biopsy on my hip told me. I spent almost two years in pain not knowing that I had breast cancer that was spreading everywhere in my bones.
My Mets are to my bones and are everywhere, skull, spine, both hips, femur, pelvis, rib, arm, sternum. Bone pain is awful. I take slow release hydromorphone and Vimovo which is naproxen based with a built it stomach pill. I’m not sure if you have that there but ask your pain specialist. The Vimovo really helps with the bone pain.
I’m like you and are amazed that others don’t have any pain. Take care.
My goodness it’s great to hear I’m not the only one in pain.
And I don’t know if I’m an inspiration. I feel like all I do is complain lately. Even though all my family and friends say I do not. So perhaps I’ll listen and shut up now.
For sarcie.....
I decided last year that I love love love learning, and so because I can’t get around as easily, I do use the internet and YouTube to learn stuff. So I bought myself the best TV! And for any of you who want to learn anything new, ie: crochet, YouTube is very very patient when I rewind back and forward over and over again! 😜
Good luck with all your results and let’s hope this year is a year of goodness for as many of us as possible.
So pleased you are stable. I’m on exactly the same meds as you & been on them for 18 months. I tolerate them well but I’m suffering from some lower back pain at the moment but it feels like a trapped nerve & it is improving.
Your crochet is really beautiful & I love your daughter’s dog. Crochet is something I’d like to start doing again. Thanks for sharing the pic. 👍
So glad for you. I too am on the same cocktail and it is still working for me after diagnosis in June 2018. I am stable. Due next ct scan end of this month. Keep it up, keep strong, be positive that’s what I am trying to do too.
Great news! Congratulations! This bodes well for you. When I saw a second opinion, bc specialist onc, not long after diagnosis and starting Letrozole and Zometa, she told me that when Letrozole works it often works for a long time. I got almost five years from it. So you are off to a great start and may very well live for a much longer time than you fear! (I started off much as you have, and 3/1 will be my 16th metserversary!)
So glad to hear of the continued success with the current treatment. I just celebrated my one year anniversary on the same course. Blessings continued.
You’re all wonderful. I feel so lucky to have found this site. Your words always make me feel like I have the support I need. Any time of day. Anywhere I go.
You’re all amazing.
And to the newbies. Keep coming here to vent, question, tell us who you are.
It’s a very rich and wonderful room here in our bubble of friendship.
Hi Timtam. I am thrilled to hear about your camper van and your plans to travel with your little dog. You are just such a brave and lovely soul. I hope we get photos as you make your way around the country. What a healing journey it will be for you. If you get lonely you can sometimes stay at hostels. I loved the hostels down under. I think many of them have adult guests. It is a way to make contacts and friends. All the best. I think all of us will love to hear about your journey. We will be spiritually along that trip with you. Hugs Vienna Girl. M.
It is nice to ready your post ... I too am a few months passed my 2 years ... I am staying busy and some days are much more painful than others but mostly I keep moving about caring for my loving pets and kids and grandkids ... virtual tender hugs to you ❤️
Well. That was last year LotusAFlower. In May this year it will be my 3 year metaversary. But thanks for your post. And here's to being pain free. Chris
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