I am a very quiet member of this community, although I read your posts and root for you almost every day.
Today I have a question.
I was diagnosed MBC de Novo last year with mets to bones. The lesions seemed to recede and disappear with Ibrance/Letrozole combi over six months, but a recent pet scan has shown around 10 new ones. No sign of previous ones. Nearly all new lesions are bony but I feel worried about hypermetabolic activity in my 'digestive tract' (Not sure what that means and am going to check with my oncologist for clarification).
My question is this:
I am supposed to be going away for my birthday and a few days by the sea with my mum and daughter. But should I delay this trip and sort my new line of treatment out first? Would one week without treatment make a difference, or does every day count?
Just for information, my oncologist spoke of Faslodex and Fugistran as my next line of treatment. (I think I got the name of the second one wrong as I can't find it on Google!) Oncologist seems to think there is no urgency to the situation. Not sure I agree.
Your opinions would be very much appreciated.
Take care ladies,
Faye
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My original mets were scattered around my pelvic area, a big one to my left hip and on some vertebrae. The SUV maxes were variable, around 13 being the largest. I also had a 10cm tumour in my breast!
Then they pretty much disappeared, and the tumour in my breast shrank to 1cm and became inactive (as it is today).
A recent pet scan showed new lesions, but the weird thing is they are new lesions in different places. This time around my ribcage, on my other hip and on other vertebrae. Maybe it's not weird. I just thought it was more likely to have progression on existing lesions, to new ones. But I am still very new to this game.
Again, varying SUVs, between 4 and 7, though my oncologist said SUV wasn't something to worry about.
Yes I did read LynnFish's post about not changing treatment too hastily, and very much appreciated it. Such wisdom to be found here! My oncologist told me a change of treatment is necessary because of the appearance of new lesions, but he didn't seem too worried. He seemed more concerned about my worrying actually.
But I was wrongly diagnosed at first, so now feel I have to be insistant with medical professionals in order to be taken seriously. I am feeling quite stressed about the recent results .. Ok, very stressed!
I must say I'm also really new to all this.It's just so unbelievable. I can't find much logic to it.
Just like you, I'd have thought that progression would have been on the existing old mets.
Yet, pet scan only shows mets more than 6mm big. The mets showing up today must have been there 6 months ago but to small to be seen.
I was told that tumors do not all have the same features. Some can be er+, others pr+ ... the treatment works on some and maybe not on others.
It's amazing your breast tumor shrank so much.
Mine is still pretty active - suvmax 5,5 - previously 11. I will be having it removed beginning of March.
Have a good talk with your oncologist. He's the best person to help. Ask him if he has several options for you. It would be interesting to see what other treatments he can offer.
I can tell you this, I now get faslodex shots each month, getting my third shots this Thursday. I have no problem with those shots at all. I am concerned about the xgeva shot and jaw necrosis. Anyone have any info, experience or feeling on this? And the bone mets-- it is common to have bone mets so small that on last scan they did not show up and now just gotten bigger. I expect that on my next scans, next month, that more spots will show up. But, my big concern is my liver health.
Go away and have a fun time on your birthday. No reason to wait. Nothings going to change. I don't think your onc is going to take you off your existing treatment before he adds or changes it. He'll probably just add Faslodex to your treatment next time, which is an injection in both butt cheeks; is also hormonal and another way of attacking the bone cancer from a different direction.
Hi Faye, I think I agree with SoCalLady. Have fun on your birthday. I realize there will probably be a bit of worry but if you can go and enjoy, go for it.
Also, I don't know enough about it but it may be worth looking at palbociclib and tumour flare. My oncologist basically prewarned me that often on imagery there it a flare early in treatment and to not be surprised if my first post starting treatment scan didn't really tell us if it was working because of potential flare. My tumor markers were good so she was comfortable keeping me on it. I'm on palbo/Letrozole combo. I don't know if others have had similar experiences. I'm still on the combo - cycle 29. I remember long ago finding a journal article on palbo and tumour flare but can't seem to find one this morning and certainly would not be confident to say that is your situation just may be worth a conversation.
Hello again Queenee and Tammy, I've just started my new line of treatment. Tammy you are quite right, my oncologist gave me the two names and I jotted them both down, not realising they are the same!So my new meds are Faslodex and Afinator. I really hope they work for me. Xx
In my experiences with oncologist If they thought you needed new treatment asap they would let you know . But I do understand that being mis diagnosed in the past would leave you questioning and not having confidence in your medical team . it doesn’t hurt to ask the oncologist/ nurse for their opinion . Then when you go on your birthday celebration you can relax and enjoy !Luann
Hi Faye! Like you, I read everything on this forum despite only chiming in occasionally. I'm also a newbie to MBC, diagnosed de novo in July 2020. I'm not of much help in the advice or insight department (I am still learning a ton), but I did want you to know that I "see" you. And, I think you should go and enjoy your trip. Happy Birthday!
Yes go have fun with your family, a week won't make a difference! I think, from what I've read of other's posts, that it is not that unusual to have some lesions disappear and others appear. Try not to let it freak you out. If I get news I don't like, I'd be lying if I said I don't worry but I really try to just move on with my life because I do believe that a positive attitude and remaining optimistic helps us a lot to keep well. Enjoy your break away!
Oh thank you ladies. Reading your replies really made me feel heard. Today's my birthday! And yes, I decided to come away with my mum and daughter to the very cold but beautiful blue skies seaside. Feeling quite emotional, so reading from you all has cheered me up. Xx Faye
Yes my seaside birthday was really nice thank you. Going away was good for my mind, I came back feeling more positive. The sea always has that effect on me!
Though now onto my next line of treatment. I'm feeling quite apprehensive about what side effects to expect. And of course, hoping it will work!!
I'm really not sure about Metformin showing up in the oesophagus. I could ask the CoC nurse if it's possible for Metformin to show up on scans?
I get the 25% oil. They start at 5% and go up to 40%!
It's expensive, far more than other ones I've tried, but I find it really good. I am finally sleeping through the night! ...Well, not all the time, but sometimes at least, and when I do wake up I manage to get back to sleep ok.
My new treatment seems to be going ok so far, though I've been a bit sick so hard to say. But for now, I don't feel as tired as I did on Ibrance. We'll see I guess.
Feeling awful. I know it's normal and will only last a day or so, but it's really getting me down.
I can't get anything done and mainly can't look after the kids decently.
It scares me. How will they managed in the future when I'm really ill with this mbc? I've never been sick in my entire life. It just doesn't resemble me. I'm not a sick person. I've always been dynamic and healthy.
Just feeling so so low and lonely.
Looking forward to the weekend. I should be feeling better then...
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