Hi everyone, On the 27 Dec it will be a year of my secondary diagnosis - solitary mets to T-9 with spinal cord compression. Had palliative therapy to release spinal cord and since February 2020 on Letrozole, Ibrance 125mg and Denusomab 6 monthly (although) I tried Zometa second time round (awful reaction).
At my first Pet scan post secondary diagnosis I was in remission (next scan February 2021).
I am somewhat concerned though that since Zometa in October I am experiencing back discomfort and heaviness. My mind starts racing because of location of my secondary. I expressed my concerns of joint stiffness, difficulty turning around in bed and backache, he said it was the Letrozole. Anyone else especially to mets to spine find this is the case? Thanks
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I will say that some brands of letrozole are worse than others. I almost cried with relief when I saw the pharmacist pull Accord for me this month as that is the generic that works best for me. All of the achiness and fatigue I had been feeling on the Sun brand disappeared within three days of starting the Accord. I had to take ibuprofen a few times a week to reduce the aching enough to sleep, and woke up middle of the night more than a few times flexing my hands because the joints ached.
My mets are in my lower lumbar and I have noticed much more flexibility and less aching in that area too since the switch. I get denosumab injections for bone support monthly, but I can’t say I notice one way or another if that makes a difference. It could also be the Ibrance dose level, as that can drive a lot of fatigue.
Are you on hormone suppression? Lack of estrogen can also drive a lot of the joint pain too. And you are only scanning once a year?
Hi,
I’m in a very similar situation to you. I’ve solitary met to T12 and I had surgery inc rods and screws etc. I’m also just over a year since diagnosis.
I’m on Palbo, letrazole and Zoladex.
I’ve had quite a few ‘episodes’ over the past year with back pain including twisting and turning over in bed. I get 3monthly MRI and CT scans which has so far shown no progression and so they say the pain etc is just linked to the fact a lesion was in spine and subsequent surgery and radio.
So I would say, try not jump to conclusions about what it could be (I have too much this past year) and hope things will settle down (though do push for scans as much as u can) Also I increased my dose of Gabapentin which has helped with the pain (good for nerve pain etc) which has really helped.
btw is it standard practice for you to get a yearly PET scan? I’ve pushed to get one but have been refused.
good luck
Dan
Hi 4748,
I have mets dotted throughout my spine in the T and L regions. I had to have surgery in January this year because my C7 had collapsed and I was at risk of cord compression.
Prior to finding the secondaries, I was on Tamoxifen. I had intense backache which was very bad at night and first thing in the morning getting up. My lower back, hips and knees were always incredibly stiff and sore. I would feel better when I started moving around.
After my op, I was put on Letrozole and Palbo and this excacerbated the back ache and joint stiffness enormously - at one point I could hardly walk as my back would go into spasm. I was actually in a worse place then than I had been before the op as far as pain and mobility were concerned.
When I was taken off Palbo/Letrozole and put on Capecitabine, I suddenly felt much better. So for me, the Letrozole was really having awful side effects that made that backache much worse.
I think if you have noticed your back ache or pain getting worse or becoming much more uncomfortable though, you should ask if they can bring your scan forward.
My Consultant recently said to me that if I have new pains or aches that persist, especially in the spine area, don’t wait for the next scan, be proactive and ask if it can be done sooner. I think its better to get it looked at now and get the peace of mind one way or another xxx