Hi ladies, I have found such comfort these past 6 months reading all your posts and stories. My mum was diagnosed in February with Mets to her spine in 4 places one pressing against her spinal cord which gave her shooting pains in her leg, she was sent for emergency radiotherapy and all has been well for the past 3 months she has been on Ibrance with letrozole, and denosumab injections but yesterday she was sent for a mri scan as the pain returned in her other leg turns out the tumor has grown and is now pressing on a nerve but the radiotherapy worked last time and stoped the spinal compression? I don’t understand this as 3 weeks ago we was at the onc and he said everything was stable after a pet/bone scan? They are now suggesting more radiotherapy has anyone had this happen? And is the tumor going bigger a sign the Ibrance/letrozole isn’t working? I’m so worried about her she is still young 57 and had first bc 11 years ago.
Thanks Faye
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I can only share my experience with this beast. I had radiation to thoracic spine in 2 spots: continued on ibrance/faslodex/xygeva. New spots were found few months later but because it was near same area radiation was taken off the table and drs felt continue treatment and watch n see. Well, some got better, some stayed same. Nerve compression is so painful; I would get another opinion first. Mixed results are common unfortunately as I have had it happen to me. I did get second radiation oncologist opinion also: we are still waiting and watching that area.
I don’t know if this helped but keeping you n mom in my prayers♥️♥️Frances
Thank you Francesca for sharing your experience it’s so awful the pain she was in but they have sent her home with gabapentin (if that’s how it is spelt) for nerve pain and steroids which has taken the pain away completely which is a good thing but we have an appointment in 2 weeks time to discuss with another oncologist so we will see what they say and hope and pray for the best.
Hi Faye, Im sorry to hear about your worries. Im afraid Ive no experience so cant advise. It is a little odd that as little as 3 weeks ago all seemed ok but now the MRI ssys not. Im not entirely sure but perhaps the MRI is more detailed. Has mum asked the Onc about it and queried why the pet and bone scans didnt show anything? Perhaps asking for a second opinion would be a good idea. Its awful waiting and worrying. I hope its sorted soon for you and mum. X
Thanks mindysooty for replying, I think we are so confused with all the conflicting information it’s too much to take in and when we don’t really understand my mum has seen a different oncologist each time and they don’t even know my mums history until we are sitting in the room, I have contacted the cancer nurse and asked for an oncologist to read my mums history before we attend the appointment and to preferably see the same onc each time, we will see what happens at the next appointment hopefully get some answers and more information. Hope you are well x
Yep same here. I complained and said the Onc was winging it at my appointments. It made me very nervous. He could never remember anything and read my notes while I was there. Not good enough. You need to have confidence in them. Its literally our lives in their hands , its not just a sore throat or flu is it. I do hope you n mum get the answers you need. X
I don’t know why this happens- I had the same thing happen to me- mri showed more in depth and conflicted with pet scan. I questioned a lot- no comfortable answers. It gets too crazy for my mind to wrap around. My last pet scan July 5 was mixed results- no change in treatment. I am just moving forward on faith and trust in God. Having all of you here keeps my sanity❤️❤️❤️
Everything you're telling is exactly my case. And I have good news for you. If medicine is working. My case: Breast cancer with radical mastectomy in 2010. 6 years later with Tamoxifen. 1 year without any medicine Healthy life and good habits. August 2018 a lot of pain in my left leg. I go to the family doctor. Muscle relaxants. They do not work. I went to a chiropractic and it makes me RX. , then MRI and Metastasis appears in hip bone very close to the pelvis. I pass with an oncologist. He sends me 15 intense radio sessions. I start Ibrance / Letrozole / Faslodex / Xgeva.
It improved pain and others worsened in other bones. At month two of treatment I was worse from pain. I have MRI shows more bone deterioration than the first one. Dr. told me, let's be sure you'll be fine. Two more months. Other Pet Scan An incredible improvement. I follow the same treatment. 5 more months and is super better. I hardly feel pain anymore. and when it bothers me I take acetaminophen and salt baths from epsom. These medicines are very strong. They have strong side effects. I'm 51 years old. I am working part time because I work in a cafeteria I try to eat healthy, do activities, and sleep when fatigue becomes present. It has also happened to me that in the week off of ibrance I feel worse. I try to eat food that helps me with the immune system and most importantly FAITH We are warriors. This group of beautiful ladies is a treasure here you can always support yourself. Grateful to God for being in this group. Here I feel free to ask what I need. Thank you thank you 😍😍😍
This is very similar to my mums history she was in severe back pain for months docs blamed old age? At 57 don’t think so!! And sciatica! Pain meds didn’t work another trip to see a different GP and finally sent for a scan there was the 4 tumors sent for radiotherapy and that was it... we have been so worried the past 5 months this is my mums 5th cycle of Ibrance/letrozole, she had a call today from consultant to say they want to hold off radiotherapy for now and they are almost certain it’s from the gabapentin and are going to have a meeting next week so hopefully we will know more and hopefully no radiotherapy! It’s good to know the pain does ease and hopefully my mum will end up with the same good results you are having, I wish you the best of luck and you are all worriors and are all so strong I know my mum Is! Thanks you this is an amazing group I’m so glad I come across it x
It gets rough. I have had sciatica the last ten days. I called the oncologist- he said there wasn’t anything found on July 5th per scan on left side. Wanted me to go in. I didn’t go- been working and doing heat, Epsom salts, Advil, massage.still on steroids for allergic reaction. The pain has been so bad and is easing up slowly. I will call him tomorrow. I have a sense something is there- here we go again. More tests.
Yes it does Sandra. I spoke to him today- he said if it gets worse he will order mri. I told him my concern is the faslodex shots- where are they going if one butt is out of the equation? He said we nurses will have to discuss it and ??!!!
Do you have any suggestions? I think it would kill my right arm and the left can’t be used because of original br ca/lymph removal. I think I should have an mri done anyway because we don’t know what’s there. He said he is hesitant because I just had pet scan. Omg this is nuts.
Thanks Sandra- yes I am calling Monday and telling him
Pain is worse and I want mri done. I need to understand the origin of the pain before I do anything else. Thank you for being there for me with your wisdom and caring. ♥️♥️♥️
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