Last pet scan: complete metabolic response - just scares on the bones no uptake - I feel much better. I was aching so much before... My right hip and the bottom of my back were giving a lot of anxiety. As soon as I get the slightest ache, I just fell awful.
I asked the radiologist if the scares can ache. She answered that mets only ache when they are active. My aching must be due to the side effects of the meds, arthritis, or just in my head because most of the aching seems to have gone after the positive news of the pet.
I saw my onc. She explained that most ladies (70%) taking Ibrance and Anastrozole/Letrozole get to be in remission like me. The lady she saw before me has had clear scans since 2018. She said that these drugs are new and that doctors are still learning.
I thought great! She then reminded me that the median for these drugs is 20 months and that it can all come back in just no time. No one knows... and I've already done 19 months... So new pet in 3 months time...
Another question I asked: What do bone mets feel like? I had no symptoms when my MBC was diagnosed and I believe I still don't have any.
She said: It's a continuous pain in a specific area that aches ALL the time, night and day. With time the pain is going to increase.
I finally asked: When do you know you've got progression? She said: When something new in your body feels really scary, you feel something is wrong.
I'm not sure that helps much because I'm always feeling scared. Yet I must admit that when I realised my breast was deformed in May 2020, I had no pain but I knew something was very wrong and I was really scared = de novo MBC with 9 bone mets.
I wish all the best and thank you so much for all being there and taking the time to write. I read all your messages.
Lovexxx
Lucie
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I have multiple bone mets but I really do not have any significant pain from them. My cervical spine was uncomfortable and not great to sleep on right side for a lot of last year. But now that has scarred over--not sure what that one but I wonder if it doesn't have to do with the frankinscence I put on it twice daily. Just kind of odd and the oncos had no real explanation. Okay the meds are probably helping but why is that the only one scarred over? Very interesting to me and I'll take it.
Wonderful news.🙏🏻 I hope you will try to rejoice when your scans are stable and not worry about what ifs. As Sandra says, don’t give the cancer any more power. Sending you all best regards! Kathleen
I agree about your 'aches' comment... in my case I do ache, and that is with my long-acting morphine plus paracetamol and naproxen. I do sometimes wonder how I will know what is happening (inc improvements!) as my pains are effectively being deadened.
Thank you for your post! So happy for you. I hope everything remains under control for a good long time 🙏.
Do you have PET scans in France as a matter of course? Here (UK) they are offering me CT scans to keep track of the disease. I wonder whether they are actually detailed enough...
Yes I know that continuous pain. I had it in my hip, leg and back and nothing would stop it. Until I started on ibrance and letrozole after diagnosis. That was the upside of the MBC diagnosis, that I actually felt better! I'm 21 months in and feel really good so fingers crossed! Good luck. X
I have always been meaning to ask my oncologist and forget - what is the difference between metabolic complete response and pathological complete response. Dr Google does not make this clear!
@Lucie - I was also de novo as well had no symptoms and have had - so far at least - a metabolic complete response. I get very minor aches from time to time which I put down to Letrozole but if I’m really worried I then tend to have scans in between the three monthly scan. I also agree that pain/discomfort can often be psychosomatic.
Thanks and that makes sense ! At the beginning of this process I did find it curious that my primary tumour wasn’t removed but have long since accepted that. Even more bizarre from my perspective is that the lesion in my mediastinum (removed for diagnostic purposes) was larger than the primary 🤔 It’s great to hear that you and so many people on this forum have responded so well to treatment! And long may that continue.
Lucie, that’s great news about your scan! And thank you for the info from your radiologist. I have recently been diagnosed with MBC and have bone lesions in several areas. They do ache, among other more intensive sensations (burning/radiating, etc) Stupidly, I sought relief through the standard route - primary physician who referred me to Physiotherapy and then rheumatologist (back and hip pain that was excruciating. (Both picked up nothing despite X-rays for arthritis in hands and feet and extensive bloodwork.) My bone lesions were only picked up through oncologist when scans were ordered based on CA bloodwork run at my normal 6mos follow up. CT scan revealed lesions in hip, sacrum, neck and skull. The point I’m trying to make is that you know your body best. Medicine isn’t an exact science, and specialists only know their own sphere of training. If you feel like something is ramping up or are experiencing new symptoms it’s not necessarily a psychological thing. And yes, as I have learned, any new or strange pain should be reported to oncologist for follow up.
Also- as a side note I have a friend who is a parent of an adult child with MS. Bone fortification is part of her regimen as well and is giving me stats on the necessity of vibrations to help these medications optimize the calcium absorption in bones. So sorry if this is not news to anyone, but it sure was to me. Apparently it’s based on NASA studies which identify a huge correlation between zero gravity and effect on bone loss in astronauts. The impact of daily activity on our bones produce vibrations which help bones absorb calcium. So even if you can’t be active (or just don’t feel like it) finding something that vibrates (massage chair, washing machine, driving or riding in a vehicle,etc) will help.
Sandra,Again thank you so much for your help and advice.
Yes scares is for scars , sorry.
This disease is really difficult to handle.
My onc is all full of joy with 'wonderful, great results, great bloodwork. These new drugs are fabulous' and in the next sentence reminds me it just won't last. See you in 3 months time.
Basically I was really relieved the pet was good. I can plan a few nice things for the next few months... I really make big efforts to live as much as I can these present moments... I'm active, I keep busy...
But, still, I often feel really awful. I put on this brave face for my family and everyone, but god it's so tough. Only my husband knows about my condition. The kids don't know, none of our friends know, none of my colleagues - no one.
I've kept my full-time job because it's the only way no one will suspect, I carry doing everything I used to do before and spend all my time smiling and making out life is wonderful.
I had a stroke in 2018. I never told anyone and I managed to recover fully.
But I know that with MBC, even if I manage to fool everyone, I'm really in a bad way.
As you say, I'm must really work at being grateful for the good results.
And anyway, worrying about the future won't change it. It only makes my present difficult.
Thank you all for your support, because even if I have a great loving family and friends, I kind of feel really lonely.
Hello Lucie, congrats on your results. I am new in the chat, also MBC to the bones. Will write more in the next few days. I have lots of reactions to some of what the others say, specially with dealing with pain, I use CBD (medical cannabis). It is great and it has zero effect (not feeling high).
Hi again Sandra,I'm sorry to hear that your mets can be so painful.
I really understand that an ache is not a pain.
This, somehow, helps me.
I feel so anxious as soon as I get the slightest ache...
What you wrote yesterday will definitely help me cope with my aches.
I mean, I don't mind aching. That's not what makes me grumble. What scares me is this MBC sneaking back. And that's what's makes the aching feel bad.
I'm also happy to see I'm not the only one hiding this awful disease from everyone.
My Gp just doesn't understand this. He says 'what are you ashamed of?'.
I just couldn't face having people feeling sorry for me and I'm sure lots of people would even end up avoiding us. I just don't want to talk about it and other people talking about me - ill with this terminal disease. It's just not me.
Anyway, my goal is to have a normal life - well, make it look this way.
I want to carry on socializing, going out, drinking, telling people off and being who I am without being pitiful. For me, this is the only way I can change my mind and feel relief.
I too have told very few people, for all the reasons you state. It is a personal choice to tell or not to tell--don't let anyone say otherwise. For me, I also want to live a normal life while I can, so that's what I do. When things change, I will figure it out then.
I always wonder why many Docs/Oncs feel it necessary to qualify any positive info/good news with a good dose of '...don't get your hopes up statistics show these drugs usually only help for about 20months.' The bad news is always prominent in our thoughts ,do they have to reinforce it?
Don't want to give anyone FALSE HOPE!
Is there sure a thing ?Wanting something good to happen is never a negative thing.
Let the possibility of something good happening lighten our load.Come On!!!!
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