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?

Hi @jani1 I also TN mine was stage 2b grade 3 2.5cm in left breast with at least 2 lymph involved . My oncologist said to me at the start of treatment the aim of the treatment was survival (which I intend to do ) there was no mention of recurring cancer . At the end of chemo when he discharged me he told me to now get on with life. The only mention of a % was from radio oncologist and that was there was a 15 % chance of it coming back. So I look at it as a 85% chance of it not returning. I was never told anything about knowing it had returned because of pain and there was nothing said about not having more chemo. I am now under the breast surgeon and I see him every 3 months at the moment as they are keeping an eye on something that is possibly just scar tissue but because of the triple negative they want to be sure. Every little ache and pain i get now sends a shiver but off i go to the gp and it's usually nothing (apart from a cracked rib from coughing ) my suggestion is to live life and not worry too much about anything if it happens you will find a way of dealing with it . Take care

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

OMG! You've been thru so much already! @Jani1 Shoulder injuries are the pits!! I've had surgery/treatment on both! Such a shame you had the fall & all the injuries on top of your surgery :( Great that your nodes were clear - that's always a bonus. Well done on going to the gym - that will at least keep everything 'moving' - with the old theory - if you don't use it, you lose it. Yes, most hormone treatment causes some sort of joint pain - I am on Exemestane and last night my left foot was KILLING me! Didn't matter what position it was in or even if I had it hanging out the side of the bed with no contact with mattress or bedding! grrrr It is fine this morning! (Thank GOD!)Oh dear .... I think your Onc may have been extremely insensitive in the way he advised you of re the getting of any other cancers in the future & the 'possible' lack of treatment available! :( That could muck with MY brain, so can only imagine how you are feeling. I'd be concerned for every ache & pain I got (which most BC sufferers do anyway!) :( Improvements in treatment are ongoing - & who knows WHAT will be a available for us in the future - even on stuff that is currently considered 'untreatable'. I wonder if you could get another Onc's opinion to ease your mind a bit and get a more understandable explanation of your condition & treatment? I will be seeing my Onc every 3 months (since finishing radiation earlier this year) & it will drop off to 6 monthly or yearly from next year. I am also seeing my Rad Onc at the end of this year & guess that will drop off next year & have yearly visits with the specialist for a while yet, every Jan.When do you see your specialist next? Maybe write down some questions re what the Onc said to you (did you record it?) Mental well being is just as important as physical well being - and he may be dismayed if his Onc is frightening his patients with comments like that! (Or even email them to his office for a written reply if you aren't seeing him soon?) All the best - I hope the aches & pains settle down. Are you able to take Panadol Osteo or similar? I take an anti inflam called Indocid (1 a day) and it helps with mine - but check with your GP before trying anything new. xx

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.

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

Sore Joints | Online Network

Jual
Member
7 years ago
I had sore and stiff joints for months after having TCH chemo, my oncologist said that taxanes do cause this and suggested some recent studies using fish oil and turmeric capsules are showing promise and worth a try! I did find them useful but may also just have been the side effects wearing off finally!
Sister
Member
7 years ago
@joannie I believe that @kmakm was asking for others' opinions about her best option from the medications that she already has been prescribed so that she could make a more informed decision. After all, if you are only able to take the one medication in a given period of time, you want it to be the most effective.
Kiwi_Angel
Member
7 years ago
I think people use this forum as a way to bounce ideas of each other and to get some advice, I know I do. We are all intelligent men and women here and some of us probably know more about some drugs and their interactions and contraindications than some medical staff. I think most of us know what we can and can’t take I think @kmakm was just wondering WHICH of her drugs would be the best to use for her particular pain.

Peace and love to u all xoxoox
Beryl_C_
Member
7 years ago
I agree with you Joannie, however, I have found the information provided by others with regard to drugs that have eased pain very useful - I have cautiously suggested some of these to my GP and we discuss the pros and cons. He appreciates that this is anecdotal evidence from a private and moderated discussion list.
Anonymous
7 years ago
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Giovanna_BCNA
Member
7 years ago
Hello @Joannie
Thank you for your comment. Certainly with any pain medications it is advisable to check with your treating specialist or GP as to what to take and the frequency. Your suggestion of Nurse on Call is a good one to contact late at night if you have any concerns.
Anonymous
7 years ago
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kmakm
Member
7 years ago
Will do @Zoffiel.
arpie
Member
7 years ago
Oh damn! That's a real bummer, @kmakm - message sent!
Zoffiel
Member
7 years ago
@kmakm Talk to your GP about some long term pain relief. When I read the word 'Targin' my mouth literally started to water, I really liked that drug, which is probably a very good reason for me to not have it. Tramadol is my best friend at the moment. I take one in the morning and it gives me enough relief to have a couple of hours of normal. One a day is a very low dose and none of the medicos seem concerned about me taking it indefinitely--as long as it is only one a day. It's lucky, in a weird way, that it disrupts my sleep if I take it late in the day--that removes the temptation to take more at night. I'm a morning person, so the compromise works for me.