REALLY TIRED...chemo effects or something else??

REALLY TIRED…chemo effects or something else??

REALLY TIRED…chemo effects or something else?? I finished chemo on 30th November last year (I only had 4 out of 6 proposed FEC treatments owing to recurrent infections), and I expected that by now (almost 5 months later) I’d at least be feeling quite a lot stronger, if not exactly A1 then at least getting there…

But I find that if anything, I feel even more tired than I did whilst on the chemo! I feel exhausted most of the time, even if I get plenty sleep I don’t feel refreshed on waking, I keep getting what feels like a mild flu-type illness, and if I go out for a short walk it takes me a couple of days to get over it as I feel so stiff and tired later on…

I’m currently under treatment for depression - something I’ve suffered with in the past, and was under treatment for since before my BC diagnosis last July - but this tiredness seems to be something else on top of the usual symptoms of depression.

A friend has suggested to me the possibility of it being Chronic Fatigue Syndrome (or something similar) not directly caused by - or as a result of - the chemo, so I was wondering how long the after-effects of the chemo could be expected to last for, and what’s the likelihood (or otherwise) of it being CFS instead?

I’ve seen so much of my GP in the past year that I don’t want to make an appointment just to discuss this (I’ll have to see him at the beginning of May, so will mention it then), but I wondered if anyone else had had a similar experience?

Sorry to have rambled on so much!

Love

Julie (Magenta)
xx

Ditto Hi Julie

Gosh you sound like my twin! I finshed chemo in November after only 4 out of 6 FEC, due to continual infections!!! Even our diagnosis are fairly similar…

I feel exactly the same, I am always tired and just totally weary feeling. I am on Arimidex and am getting some pretty wearing side effects from that, including night sweat every hour and lack of sleep. This is just exacerbating the problem and every day I wake up and am more tired than the day before. Infact I said to my hubby the other day, that even though I was getting really ill on chemo, I did feel less tired and worn out!

Very much like you I am loathe to bother my GP as I seemed to have lived in his surgery for the last year. I did try and mention it to my BCN when I had to see her last month, but it fell upon deaf ears I’m afraid - so I’ve decided to go it alone and just put up with it, assuming it must be the norm??

Well, I just wanted you to know you are not alone and I am thinking of you.

Luv Lynn x

‘Fatigue’ factsheet by Cancer Backup Hi Julie & Lynn
You may find this factsheet helpful to read, it is available via the following link:

cancerbackup.org.uk/Resourcessupport/Symptoms
sideeffects/Fatigue

Kind regards
Forum Host
Breast Cancer Care

do you know i am not going to be of much help but i recall someone else posting on this and saying they ended up having tests done and they had a deficiency due to the chemo and that is why they were so tired. their body had stopped producing something, oh i am sorry i can’t remember…

sharon. x

Thank you! A big Thank You to everyone who’s replied! :slight_smile:

I’ll mention it to my GP when I see him early next month, and I also have an appointment with the breast clinic in June, so if I get to see my breast care nurse (who’s been absolutely wonderful!) at that time I’ll mention it, too…

Thank you again

Julie
xx

Hi Julie,
I have to say I sailed through chemo and rads was very lucky, had the odd day when I was tired and thought I had escaped.
How wrong I was! Last September having finished treatment 6 months prior I developed severe fatigue. I could sleep the whole day If I was able and still have no energy, even going to the loo was an ordeal! It was very difficult having to go to work as well. Its still there although to a lesser degree and I have to pace myself ie going to bed early when I have to go to work and putting myself first!

Tiredness Hello,

Just like to add to what has already been written, I finished rads on May 18th 2004 after having FEC before that and I am now on Tamoxifen but even 3 years after treatment the tiredness is still with me. I think its a combination of everything, after effects of chemo & rads, being on tamoxifen, the worry of it returning, working, & just generally everything that has happened over the last 31/2 years or so. I did have tests last year because of the tiredness but they came back clear. I have periods(especially when I’m on holiday) when I’m fine and the tiredness isn’t really that bad, so it does come and go

It is very difficult for other people to understand that just because we have had our treatment there are still reminders of what we have been through.

I am learning to put myself & my husband first(he has heart problems!) and just live our lives at the pace that suits us.

Hazel

Give it loads of time Hi Julie,
I hate to sound like the Voice of Doom but I am now 2 years on from chemo and rads and am only just starting to pick up energy. I also suffered from depression and am still on tablets but hoping to taper them off soon. Finishing treatment did not fill me with joy and relief.

I had to stop work last December due to the tiredness, sometimes I wished I was dead I was so exhausted. Sorry to sound so miserable and depressing about it!

Having said all that, we are all different and it may be you can pick up much quicker. I recall seeing a message on this site recently from a lady who wondered why she was tired after taking up running again a few months after chemo! Hollow laugh from me.

We have all been through a bad trauma (I liken it to a 6 month train crash) and our bodies taken a battering - cut into, poisoned and burned. It takes ages to recover, physically and emotionally. Don’t expect too much of yourself - try not to eat too much choc! (my downfall) and just rest as much as you can.
Love, Sue

Thank you for all your very helpful replies!

I never had rads or Tamoxifen.

I started to feel better earlier this year, but then the feelings of crushing tiredness, aches and pains, headaches, etc crept back with a vengeance, which is what I find odd! Also headaches, joint pains and stiffness and generally feeling ‘fluey’, etc…

I sometimes get the impression that people think: “It’s been nearly six months since chemo - surely she should be over all that now!” Probably me being daft, but that’s how I think, sometimes… I know this probably sounds silly, but a diagnosis of Chronic Fatigue Syndrome would maybe be more tangible, and help others to realise that I’m not imagining it, or malingering!

As for working - I haven’t worked for 16 months as I was signed off with depression before my BC diagnosis.

My job is in retail and involves a lot of standing around, as well as stretching up to get goods from shelves and handing over sometimes extremely heavy bags of shopping to customers.

But I now have reduced strength in my right arm from my lymph-node removal - I had to be glued with surgical glue as the skin kept tearing with conventional stitches…the surgeon had a right job patching me up afterwards!

So I don’t feel able to go back to work until I’m ready - both physically and emotionally, and the way I feel, that’s a long way away!

I’ve even considered the possibility that I might have to change my job completely, which is a daunting dilemma when you’re in your 20s and feel completely well! So it’s a hundred times worse when you’re the wrong side of 40 and you feel you can’t even summon up the energy to get out of bed most days!

Well, I’m sorry to babble on again! As I said earlier, thank you again to everyone for all your help!

take care! Love from

Julie
xx

My best wishes… to you Julie. It might be a good idea to look for something other than retail work as that can be exhausting, especially with so many lymph nodes missing! I only had 4 removed (all clear). I also only had 4 sessions of chemo as my oncologist said they had concluded it made no difference to outcome whether you had 4 or 6 so that might be a relief to you. Odd how hospitals seems to be different in their treatment regimes.

I also have Megace tablets for hot flushes - I was ER and PR negative too and can’t have HRT so Megace help a lot (it is a synthetic hormone tablet much less dangerous than HRT)

All the very best for the future.
Sue

Thank you! Thank you, Sue!

I had 30 lymph-nodes removed, although they were all negative (thank God!).

The chemo has made the Menopause kick in, although it’s not been too bad so far - just hot flushes! I had a hysterectomy 10 years ago (when I was 32) for fibroids, so that limits my HRT options, and I’d rather only resort to HRT as a last resort, although I’m not averse to trying natural herbal alternatives…

My BC wasn’t hormone positive, but I’d rather avoid too much oestrogen… :slight_smile:

My ‘bits’ have caused me so much trouble over the years - I always say that ‘Next time, I’m coming back as a man’…although it’d be just my luck that my ‘thingy’ would drop off!!! :smiley:

Anyway, thanks again! :slight_smile:

Take care!

Love

Julie
xxx

Chronic fatigue Hi
I didn’t have any chemo thank the lord, just (did I really just write that!) right mastecomy and x15 RADS which finished in mid- December.

This was all following a reoccurrence 11years down the line. Having made a good recovery first time round I was devestated to find it had returned but got on with it and to be honest the recovery from surgery was a breeze compared to last time, nodes removed last time. RADS went well.

Christmas came and went, only slightly tired. Saw the ONC and he prescribed Tamoxifen again in January. Get your life back now he said, but I feel tired said I. Well you will feel better after 3-4 weeks, he said, play tennis get fit again. (I never got unfit no raquet sports but kept up the walking!).

Must admit at the end of January I did feel more lively and even thought about a return to work at half term (I’m a primary teacher). Then the brick wall hit. At first I thought it was the affects of the tamoxifen, aching joints, woolly head etc, but it was OK last time no ill effects. GP suggested I have a break to see if the symtoms disappeared. Breast Care Nurse suggested it was a viral infection that was slow to clear due to my low immune system.

After another 4 weeks off the Tamoxifen my GP did some bloods and they came back clear, but I was soooooo tired.Couldn’t complete my normal walking circuit without a break and a sit down. I had hoped to go back to playing tennis but just a few steady games left me exhausted the next day. Then the GP dropped his bombshell, as the bloods showed no cause for my fatigue he has diagnosed Chronic Fatigue Syndrome.

What to do? Pace yourself, no treatment available locally, 9mths waiting if you do want to try and then its an hour’s drive away. Somedays can’t bring myself to get out of the chair even cleaning my teeth is a slow process, good spells are less frequent as when I have one I tend to do too much. It’s a vicious circle.

Anyone else had this dumped on them? Sorry to be so down but getting this down has been very cathartic!

Julie

Dear Julie, I really feel for you as tiredness (well in my experience that word doesn’t quite describe it) is awful. I was desperately exhausted during and after Chemo and it was all due to my very low blood count. I have however regained a lot of energy but only when I sleep well so it doesn’t fit your picture. I haven’t read the other posts but I would definitely get your blood levels checked. You need to know what your white blood cell count is. If it’s low perhaps that’s why you’re getting so many infections. By the way I finished Chemo last August and have had two virusy type things since Xmas and the last one lasted 6 weeks.
Why don’t you also discuss the possibility of ME with your doctor. Why not contact the ME helpline.

Hope that helps.
Love Frances

Hi Frances

Thanks for the support Frances. Its good to know people out there care.

I gather that the bloods the GP had done were just those you suggested. As there was no anemia or viruses present and no other nasties lurking that the diagnosis is CFS or as some call it ME.

I find this very frustrating as although the dianosis answers all those niggly symptoms such as sore throats that last less than a day, chills and sweats, lack of concentration (glad I’m not going mad), sleep disruption, aches and muscles like lead after the least bit of exertion, there is as yet not a lot they can do.

All the web sites talk about is pacing, graded exercise, and cognitive behavior therapy (telling you how to cope). All well and good but when you have to wait 9 months for a referal and then travel for an hour to see someone the self help route seems preferable! Just thought that someone out there may have some ideas!

Cheers
Julie

Dear Julie, I do feel for you. Know that you’re not alone in feeling so wretched with something else to deal with. When you think what we have been through it just doesn’t seem fair to be dealt another blow healthwise. I saw my consultant yesterday as I’ve been just diagnosed with Osteoporosis. My spine is at “high risk of collapse”. The lovely consultant who is in fact a dermatologist (I’ve developed warts on my fingers since Chemo!!) said that it is often the case that women deal really well with all the trauma and treatment that BC throws at us and it’s the aftermath with all the extra health issues that really knocks us off keel. I just find this site so supportive knowing I’m not alone. Stay with it Julie, you will come out of it but if it is CFS or even Glandular fever (have you thought about that possible diagnosis?) it’s going to take time. Have you tried to find a specialist consultant who can offer you the best advice. why not contact the helpline and ask about names of specialists in your area.

Frances x