Forum Discussion
Sore Joints
Hi I was diagnosed in August 2017 at 54 after having pain in my left breast occurring between mammograms. My TNBC tumour was stage 1 grade 3 1.7cm and removed, and then had a reexicision to clear margins. 3 lymph nodes were also removed and clear. I began my first of 4 ac chemos and was really unwell with stomach issues-gastritis. A week later I lost my balance and fell dislocating and fracturing my shoulder also hitting my head passing out. Ambulance to hospital neck brace precaution, shoulder relocation, c.t., xray and MRI. Discharged after 3 nights. Oncologist delayed chemo for 6 weeks until I recovered and then swapped me to Taxol weekly for 12 weeks and then finished with 3 AC chemos last one in April. 5 weeks of radiotherapy followed finishing June. I have taken a few months to recover. My joints are really sore especially after sitting in one position for 15mins or more. The joint pain moves around to different joints so I am wondering whether chemo has brought on arthritis. I have started a gym program and walk most days to keep my joints moving. Has anyone else been affected with joint issues following chemo? Also I am not having PET scans at all as the oncologist says there is no advantage when you are TNBC so he discharged me from his care as soon as chemo finished. I am just under the the care of my breast surgeon. The oncologist says only 1% chance of cancer returning to breast. Apparently I will know if cancer has returned anywhere else because I will be in alot of pain and it will be aggressive so chemo will not have any affect next time. Has anyone else been told this?
26 Replies
- @Sister I went with the codeine & it helped. Good luck today.
- @kmakm - I wish I had seen this last night. Codeine for me is always the best - the others don't do anything. But a bit late now... I do hope you got some sleep.
- I know it's late but if anyone could help me out I'd appreciate it. I'm going to bed but my ankle pain from Letrozole is the worst it's ever been. Panadol Osteo isn't working. I've got some drugs left over from the various operations I've had since last December. What would be the best to knock the pain on its head so I can sleep: a paracetemol & codeine combo, Tramadol, Oxycodone 5mg (aka Endone), Targin, and an anti-inflammatory diclofenac. Which would be best do you reckon? What's worked for you?
- Glad to hear it is relatively 'normal' and I am not the only one with joint issues thanks for your post Primek and all others.😁
- Thanks Smokie08 just what I needed to hear. Heading to Bali in 2 weeks so that should help my stress levels. A trip to the GP before I go I think to settle my mind.
- Yes yes yes. Joint aches for about 6 months at least. I started fish oil (the max dose for joint pain) and regular pandol osteo. With weight loss and continuing gentle exercise I dropped the panadol and by 12 months I stopped the fish oil (as I was having dental work and found I didn't need it anymore). Hope it improves in time for you. Kath x
- Terrific advice there for everyone, @TripleNegMama - thank you so much for that information - I will be copying this off & filing it for possible future use.
We ALL need to be SO proactive in approaching our own treatment - and our concerns need to be taken SERIOUSLY! They may just be 'aches & pains' to the professionals (particularly as you AREN'T on AIs) - but it is a massive worry to you that you have them!
At worst, it is our LIFE at threat here - and at best our quality of life. :(
@Jani1 .... It might be a good idea to Print this entire 'thread' off & take it with you to see your GP AND your Specialist .... highlight the areas that you want to query with them (especially Triplenegmama's bit) - and read it out to them (from those who are going thru it!)
Most GPs & specialists haven't 'been thru it' (they are only sprouting what others have told them, or what they've read in books when going thru uni!) so they have no real idea of the physical & emotional toll that this shitty disease does to us - let alone our fears of survival. It mucks with our brain as well as our body - so do what you have to do to get 'checked out' properly. And everybody's symptoms are unique to them - No two are the same.
If the cost of the PET scan is difficult for you to find - maybe ask the family to donate $$ instead of presents for your next Xmas or Birthday to - a far better present than a pair of socks or hand lotion! ;)
Once you have it - you have a 'picture of you' as of 'now' - so if you DO need another one years down the line - you have something to compare it to. Whilst it is not good to have a HEAP of scans/xrays etc ..... you do need to be armed with the best info for the boffins to understand just what IS going on with your body.
I hope you are able to get it done soon - for your own peace of mind & sanity!!
All the best, take care xxx Taxol and Docetaxel are notoriously hard on joints and ligaments, mine are still troublesome two years after I finished my second round of chemo. My first treatment 12 years ago (AC) didn't have the same effect, so I was a bit surprised at how crippling the damage can be.
I find getting out of the car after even shortish trips particularly challenging. And embarrassing--the staggering and hobbling is unavoidable. Once I get going I loosen up and can walk for kms or do a serious exercise session without too much pain, but once I stop I seize up again. It's very frustrating. I've got the added joy of hormone treatment now, but even after a break from those delightful drugs, the joint pain lingered. Mind you, I wasn't in mint condition before the shit hit the fan again, so perhaps my expectations of total recovery are a bit ambitious.
Follow up care varies from person to person. My beast and plastic surgeons have told me there is no reason for them to see me unless something else goes wrong. I see my oncologist intermittently, mainly if I need to talk to him about my medications. He hasn't recommended any scans and has told me I'm likely to know if anything is turning nasty. My extremely experienced and sensible GP is my go-to person and I see her every three months so we can keep a good record of how I'm coping. She has ordered a bone scan for me when I had trouble with my back and hip (panic stations!) and the occasional blood test to monitor liver function etc with the view that if we find anything sinister the oncologist will take over again.
The advice to listen to your body is probably the best anyone can give you, the main thing is to watch for changes which don't vary--pain that is constant and doesn't move around, for example. Repeated scans are costly and are not generally very good for you. I understand your concerns, but you have to think about when you would stop having them. Two years? Three? Five? Many of those decisions are personal and related to how stressful you find either the lack of knowledge or the test themselves. Good luck, Mxx
- Oh what a lot of BS, unless your cancer is already at stage 4 then I'd say throw everything at it. If you get a local/regional recurrence a PET will find it (no medicare won't pay and you will have to pay if you want it) and yes you will then only have a 50% chance to beat it and it could still recur and go to stage 4 - but shit it's worth a try to deal with it. I have a very resistant TNBC and no they couldn't cure mine - but hell the PET found it when it was just at local/regional before it went to mets anywhere else and we gave it a shot, turns out that mine is a really nasty ......... and nothing was probably going to pull it up but it was certainly worth trying. If you leave having a PET done until medicare will fund then thats at stage 4 and then nothing is going to stop it just maybe slow it down. I'd be asking for a second opinion and asking for regular PET scans if you can afford them.
