chronic fatigue syndrome & breast cancer

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I thought I had already submitted this but can not see it, so I’ll try again.

hi, I hope the following may help fellow patients,

Diagnosed March 2007. WLE, negative nodes, ER+, HER2+. 6 FEC, 4 weeks rad, Herceptin which took over a year due to break because I contracted chicken pox. Started Tamoxifen Sep’ 2007.

From the first chemo I still have problems with frequent sore throats, blisters in the back of the mouth, nausea. Doing anything physical makes me feel sick, low blood sugar feeling, I go pale, dizzy, shaky, feel generally unwell, bouts of amazing energy only to crash a day or so later which would last for several days. I feel ‘toxic’, as though moving about over loaded my kidneys and liver so my body would shut itself down. These are just some of the symptoms and unfortunately many of them coincide with expected side effects of treatment.

I had numerous blood tests by the Oncologist and GP who tested my thyroid etc. All came back ok but no one seemed to follow it through. I’m sure they put the symptoms down, firstly to chemo then herceptin. I finished herceptin over a year ago but still the symptoms persisted. Last year I kept waking up with an aching rib cage to the extent, the vibrations of my heart hurt. I was terrified the cancer was back. Thankfully my oncologist ordered x-rays and a bone scan. I had to have more x-rays but the end result was, it hadn’t. I took myself off tamoxifen for a couple of months over Christmas to see if it was side effects of that but I got worse.

Finally I saw another doctor last month and she immediately said it was chronic fatigue syndrome. I looked at the guidelines on the NICE website and there were pretty much most of my symptoms. I’m still glad I had the bone scan because had I had the diagnosis before the rib cage symptoms, I would still have been worried it was cancer but I guess that too is down to CFS/ME.

NB: The reason I am posting this on here, is because she said, she is finding more and more ladies in their 30’s and 40’s who have had breast cancer treatment are going on to develop CFS/ME but not so much ladies in their 60’s.

I wonder if it is because the younger patients do not have the time to convalesce due to jobs and children. I have neither but I spent a lot of time in the gym, dancing, riding, building a vegetable garden, replacing windows etc because I was so determined to move on from the cancer. One of the most important pieces of advice I gleamed from the NICE report, is that anything but gentle exercise is totally the wrong thing to do. I feel society puts too much pressure on us to keep going, to be “positive”, which all takes a lot of energy. I felt my family treated me as though I just had a bad case of flu and once the chemo had finished (never mind the rad and herceptin), I should be back to normal. Whereas in real life, probably like you, the diagnosis was devastating and I felt I was going through a range of emotions very similar to grieving and am still finding it difficult to comes to terms with.

So if you feel tired all the time and rest does not help. Look at the site nice.org.uk and if you think you may have CFS/ME, speak to your doctor.

I hope that helps.

Poppy

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Poppy … thank you very much for posting this information.
I was dx in 2008 (similar dx to you but without Herceptin)and have real struggles with fatigue - what you have to say has really struck a chord.
I have been speaking with my cousin who was diagnosed with CFS/ME 6 years ago. She keeps saying to me that my symptoms sound identical to hers. Particularly the “flare” element - the way that a really profound spell of fatigue will seem to come from nowhere. One minute I’m fine and the next minute I’m feeling like death warmed up - and vice versa.
The problem with the word “fatigue” is that it really isn’t adequate I feel. It is so much more than just tiredness - the general sense of weakness and malaise is more like flu. And no amount of rest seems to shift it.
I am starting to recognise a pattern with my symptoms now and these spells of extreme fatigue don’t scare me quite as much as they once did (like you I was always certain it was the cancer causing it.) I have started keeping a diary of when I feel awful to try and keep tabs on it.
With the general day to day tiredness (which I think is caused by Arimidex) I find that exercise helps. I walk a lot. But too much exercise can tip me over into feeling dreadful. It is a hard balance to strike.
Interesting what you say about low blood sugar - I have always had problems with hypoglycaemia and the chemo/rads/Arimidex seem to have exacerbated that. I have to be even more careful about eating slow release carbs now.
Did your GP have any advice to offer regarding treatment for CFS?

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HI LADIES
I have suffered from cfs for 20 years. When I was diagnosed last March, and then had surgery I suffered a major relapse and was ill for weeks, then flu jab in October knocked me for 6, surgery 2 weeks ago, and now I am totally knocked out the fatique is awful, I am dizzy and all over the place, like you I think it’s the cancer.
I find it so difficult having cfs for 20 years and now bc, I don’t seem to have much quality life at all, sorry to ramble but that’s how it is and I have to try and get on with it. If yiu want to know anymore about it please pm me.
Libby x

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Dear ladies, thank you for your replies. Msmolly, you asked what my GP is doing to help. She is referring me to Professor Pinching who specialises in M.E. at Treliske Hospital in Cornwall. Your local hospital may have a specialist too. My GP agreed last Tuesday to carry out the range of blood tests advised by the NICE guidelines, just to rule out anything else. I should know the results by the end of next week.

Today, I saw a food allergist to help with a nasal drip problem but also because I wondered if anything I am eating is contributing to the symptoms. She had to stop testing (using kinesiology) after five substances because my arm was too weak and I was showing sensitivity to everything. She said (as my GP predicted she would) I have candida. I’m going to ask my GP if she would test me for candida before I go on the no sugar/yeast diet for six weeks. Researching candida though, I was amazed at the similiarities in symptoms and I know people who have M.E/CFS often have candida too. I can’t help wondering if M.E. is candida. I have left a few questions on my local M.E. support group forum. If either of you or anyone else knows of M.E. sufferers who have been treated for candida, I and I’m sure everyone else would love to know, did it cure it?

Poppy

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I too have had ME for 10years and was diagnosed with breast cancer in 2007. I had mammogram, then chemo and radiotheraphy, was unable to tolerate side effects of letrozole and now take Arimadex. I have found the ME symptoms appear so much worse now but I feel sure a lot of the aches and pains and headaches etc are the side effects of Arimadex. Very hard to describe but they feel different. I honestly don’t think ME is candida but yes lots of ME patients have candida. I have also put a lot of weight on with this tablet and I am having a lot of pain in my teeth. Also my teeth are moving. Has anyone got any advice or had this happen please?

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hi poppy, i am so glad that you have posted this, i could have been typing it myself !!!
I will be going to the gp tomorrow !!!

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Smallstar, let us know how you get on at the GP.

So far the Carinosin prescribed by the homeopathist seems to be helping. I feel brighter within myself. I still can not do much without feeling washed out but the sore throats and blisters are a rarity rather than a frequent occurance.

I am due to see the ME specialist at the end of June, so will let you know what happens if I think it will help you.

I’m also enquiring about other methods of food allergy testing rather than kinesology. I’m discussing a method with a nutritionlist who uses blood screening. It all comes down to cost but if I find anything useful I will post it on here.

It’s a bit frightening to hear from others who have had ME for many years and I feel for you having bc on top. Keep posting on the forums and talking to others who have been through the same.

x