Hello ladies
My mum started on ibrance and leterozale in March. She has a small tumor in her lung and a node showing cancer too. Her first CT scan results show no change. I know that's good but we were expecting some reduction. Has anyone experienced no change at the start of treatment (4 rounds so far) only then to experience some reduction later down the line? Am desperate. Shes been so up and down but also a bit disappointed there isn't a slight reduction.
Hi Millie666 -
You're so wonderful to look out for your mum...
...and, yes, I very much had that experience. I started out on Letrozole (only), then added Ibrance when it was approved. Scans were stable for several months then I actually had a lot of progression, i.e. went from one recently radiated tumor to widespread bone mets. This was about 9-10 months after starting Letrozole, 6-7 after adding Ibrance. But we did not change treatment and I saw gradual improvement over the course of another year or so to the point where I had "no medically significant disease"! After that, it very gradually got worse, i.e. tumors were hotter/brighter over time until I had modest progression.
So, my point is, these drugs can take a while to work. And, in my experience, things can actually look worse during that process. I'm very grateful that I was able to remain on the treatment while I gave it ample time to show the improvement...
....but it can certainly be stressful, waiting to see what happens!
Take care,
Lynn
Thanks for replying Lynn. So so difficult trying to accept the whole situation. 12 years post original diagnosis and then all of a sudden our world turns upside down. X
No change is good. That is what my scans showed for 2 years. Stopping progression is the major thing with MBC. We all want it to go away but celebrate the fact it is stable.
I am sorry to hear of your mother's diagnosis, and it is very loving of you to reach out on her behalf. Typically, endocrine therapy works a bit slowly, and the fact that the cancer is stable indicates that it is working because it is preventing growth. This condition is referred to as being stable, which indeed is a very good thing!
Good wishes to you both!
Thankyou so much. I so hope it stays stable for a long time yet. My worst ever fears after my brother then mum then dad then mum again having this awful awful illness. I do all I can to raise money for our charity in the uk as been in our family for years now but so far we have beaten it until mum was diagnosed with secondaries in march x
Hello. I was on Ibrance and Faslodex for about 4 months before I had my first scan. My tumor markers showed a big drop so I was confident my scan would show regression. Well, some did regress, some stayed the same and then some nodules appeared! I continued on the same meds with mixed results.
Hi Millie,
You sound like such a loving, caring daughter. Your mum is fortunate to have you with her to support and encourage her.
I'm not on the exact same treatment as your mum (letrozole, zoladex, zometa) but what I have found is that no change at the start of treatment is actually good news. It means that since your mum started treatment in March the cancer has been stopped in its tracks. I like to view it as putting the brakes on the disease. So even though she has not yet seen a reduction in her tumours, the fact that she is stable means that the treatment is working to control the disease and stop it from progressing and spreading elsewhere in her body. I like to compare how I feel now to how I felt at the beginning. To begin with, I could feel "activity" in my body, but being stable means I can no longer feel anything going on. I hope I explained that properly and that it makes sense.
As your mum's treatment continues she should start to see a reduction in her tumours. I can't remember how long it took before I saw any change. I think it was from the second CT scan following the start of treatment. I would have to go back through my radiology reports to be sure. At first, the breast tumour stayed the same, but then the shape started to change, and it gradually started to shrink. Now it can no longer be readily seen on scans and I have had eight consecutive stable scans. I think that with hormone therapy it can take a little longer to see changes. I'm not sure how long it takes for ladies who are on chemotherapy.
Take care,
Sophie
It will probably take awhile to work and everyone is different.
I'm on Ibrance and Faslodex shots. Been stable. Will get results on my scan from Monday tomorrow! We always hope for the best.
I wish that for your mum!
She is lucky you are her daughter as I am also lucky to have my wonderful daughter!
We need your support more than you know! Bless you both.
Hi Marianne,
I wish you the very best for tomorrow as you receive your CT scan results. How are you feeling?
Sophie
Sophie, thank you. I always feel exhausted the day after my scan. Between the stress and the dyes for both scans. But otherwise, I have been doing pretty well.
Good luck for Monday... mums results slightly more encouraging than first thought as the lymph node is not squashing the lung area as it first did so some reduction x
I just noticed the update. I'm pleased to hear that there has been a reduction in one of your mum's tumours. That is really good news!
Sophie x
Your mother has several things going for her! A wonderful daughter is one of those. Family support is so important for us. Not that it has a direct effect on the cancer cells but it has a huge effect on qualify of life, which is pretty important for most of us. The fact that the cancer has stopped growing is a great predictor that hormonal treatment is going to work well for her. When I was first diagnosed, with mets from the get go, my oncologist told me that she wouldn't be ordering scans until I'd been in treatment 3 months and even then we might not see improvement as the meds like Letrozole often take time to reduce the size of known lesions. When I went to a major cancer center for a second opinion, the well known and respectede bc specialist onc told me the same thing! Another thing the specialist told me was that when Letrozole works it usually works for us for years and not just months! (I got almost 5 years from it, a long time before drugs like Ibrance were around.) I don't know exactly how old your mum is, but being older often means that the cancer cells are less active, less aggressive and slower, just like many of our cells are as we age....... and if she is past menopause, that is a plus, too! Millie, my own mother died from lung cancer in 1985 about six months after she was diagnosed. Her cancer was sooo much more emotionally devastating to me than having this blasted MBC has been for me! Our mothers are such key people in our lives and in who we become, and if we have a good mother, the thought of losing them, or of them being sick, is really upsetting. During my mother's cancer, I lost my appetite for the only time in my life! I had to get sleeping meds from my primary care doc, who understood completely and was willing to prescibe them for me on a temporary basis, something he didn't usually do. He also taught me some slow breathing relaxing exercises. (He was a dear!) I hope you have friends outside your family who can be supportive for you. You do need to take care of yourself! Keep us posted and we'll be here for you!
Thanks so much for your lovely reply. Its hard. Mum lives 2hours away, would usually see her at least once a month but shes still shielding. I have 2 little boys she is desperate to see and to cuddle but shes also sp worried about risks etc. Anyway 2 calls a day and face time helps. But I do feel her pain especially on low days. The gyms here have just opened again so that will do me good! I do have great friends who already hold my hand. The scan showed slight reduction and the onc was happy....so today I am xx
Hi there I have been on the same drugs for4 cycles now and it has done nothing to tumour in the plexus or T3 and may have found another one on the plexus but they are stable ..but like ya mum dissappointed they haven't shrunk 😥
Cherylx
Results of first scans on Enhertu 
CT Scan Results
