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What does chemo actually do longer term?

9 replies

Cleanbed · 17/05/2024 21:57

Just wondered if I should call the gp at some stage..
I had chemo a few years ago so don’t know if this is related? As, since chemo/ radio, and I’m now on tamoxifen and the letrozole, I’ve felt energy less and store feet. Websites say what side effects will be while you are on treat, but not what will happen long term. Is my blood changed? Do I get less oxygen? It must have some sort of effect fgs.
I am exhausted all the time, stiff when I stand/ get out of the car. When I lie down, my feet are sore and my legs and Kees are heavy. My leg veins hurt, often one in my hips to leg. The top of my feet are sore- I think that’s arthritis.
i often feel like my blood is tired, if that makes sense.
im wondering whether I should get some bloods done, or just eat more veg.
thank you!

OP posts:
mauvish · 17/05/2024 22:03

Well, if you're worried and not feeling well, it would make sense to speak to your doctor. They may be able to reassure you; they may want to do some investigations.

Cancer feels like a massive diagnosis and it's easy, for us as patients and also sometimes for medical professionals, to put other symptoms down to that. But of course it's not always that.

Get yourself checked out and hopefully either everything will be fine, or it will all be something simple which can easily be sorted.

SamPoodle123 · 17/05/2024 23:24

Have you checked your iron? I would speak to the doctor and get bloods checked.

Penguinsa · 18/05/2024 00:57

Chemo can cause long-term neuropathy which might be the sore feet. I don't think your blood or oxygen levels will be changed. Stiffness might be letrozole. My energy levels are fine 2 years post. I think it would be worth seeing a doctor or discussing with an oncologist to see if there's things you can do to reduce this like I take a multivitamin with iron sometimes - you could get bloods to see if low in iron etc. It also maybe worth seeing about letrozole. I was advised to stay on Tamoxifen to have less side effects but there are several AIs you can swap too, oncologist might be best for that if you have access. Might be worth getting basic heart checks as well just to rule that out.

Hails68 · 18/05/2024 02:11

I am on Letrozole, but had radiotherapy not have chemo. I have the same symptoms as you, I find it hard to bend and put weight on my feet in the mornings, joint stiffness and fatigue. My oncologist has said that these are side effects of Letrozole. You could ask about changing to a different AI, but they all have similar side effects apparently.

WarriorN · 18/05/2024 09:21

Unfortunately it sounds like the letrozole based on friends' descriptions. Flowers

Penguinsa · 18/05/2024 10:03

My oncologist kept me on Tamoxifen as she said I had minimal side effects and letrozole etc was likely to be worse and cause aches and pains. I do have some neuropathy left from chemo. You maybe able to swap back to Tamoxifen if that was better or if not my oncologist said it's worth trying different AIs, all have similar side effects but she said some people can tolerate one but not another. AIs have a slightly higher success rate but the difference versus Tamoxifen would be more than wiped out if it's say stopped you exercising regularly. So I do Tamoxifen plus 3 to 5 hours exercise a week and feel great energy and fitness wise on that.

Covidwoes · 18/05/2024 10:21

OP my mum had all those side effects from tamoxifen. Worth asking a medical professional about that.

Penguinsa · 18/05/2024 10:28

The other thing my oncologist did was a 6 week break from Tamoxifen to see what side effects it was causing and what was chemo / menopause. Ones from chemo normally start in chemo (unless heart) - it can be hard to tell what is from what with so many different things. But there was almost no difference on and off Tamoxifen for me (but quite a few people struggle with it and give up). We are also in unmedicated menopause.

Cleanbed · 19/05/2024 21:45

Thanks everyone! Reassuring to know others have the same, sorry you do though.
ill check with the gp then, also suspect I need to add more veg to my diet.
sorry not to answer sooner, fatigue is reaching new levels!

OP posts:
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