Tiredness

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1

I have started this topic on behalf of Terry
Kind Regards
Emma
Moderator
Breast Cancer Care

Can tiredness be quantified ?

My wife who as some will have read has BC with mets to liver, bones and to a small extent lungs. She is on Xeloda, 4600mg/day.

Shee sleeps or at least dozes 18 hours a day in bed and even when she gets up
( she can only sit in a reclining chair )
We tried asking the Onc who seemed to say it is the Xeloda & the cancer but I can find no reference to this sort of tiredness when reading about Xeloda. This has been going on for 6 or 7 months now, needless to say the less my wife moves around, when she wants to go somewhere she finds it more difficult.

If you could let me know of any comparable symptoms you may have had out there, I would be grateful.

X

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Hi Terry

Sorry to hear that your wife is so tired I have had the same medication and it is (as is most chemo) very tiring,but able to work part time. Is she in any pain or discomfort… I have mets in liver and this can be quite uncomfortable and the pain is positional in my case so I prefer to keep still in the postion that causes least discomfort. I also have fentonyl pain patches which help with the bone mets.

Now the weather is fine I have been making myself take a little exercise, hardly more than a little amble around the garden or to the beach. Very slow and no hills. It makes me feel much more positive . I am now on a different med so am awaiting the side effects.

My other half is very supportive like you so she is a lucky lady.

Love to you both

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Tiredness is miserable - it really gets you down and the people that are doing the caring as well. I wish there was a magic cure for this.
Xeloda likes all chemo lowers your white blood cell count and that in itself can make you tired. Is she aneamic? - I get intermittent anaemia with xeloda and that makes me tired and breathless. Having secondary cancer is very tiring anyway and I know when mine is spreading I always get more tired so I think it is a combination of having cancer, mets and chemo. I’m so sorry not to be more helpful.
I don’t know how much your wife weighs but to me it sounds like she is having quite a big dose of xeloda. I’m 14st and 45 yrs old and have a two third dose for my weight/height ratio and so only have 3400mg xeloda daily in total which is controlling my mets and gives me less side effects. I wondered if a reduction in dose might also help.

I found in my leaflet from the company that makes xeloda, the following
under driving and machinery - ‘xeloda may make you feel dizzy, nauseous or tired’ and
under possible side effects -tiredness.

Terry - I know we’ve communicated about xeloda in the past and you never seem to have the same info as I have and I wondered if you were getting any support from other agencies out there. I hope you are not offended by that but I get so much help from the hospice service and the district nurses and your wife sounds so much iller than myself that it doesn’t make sense and is grossly unfair if you are carrying this all on your own. You obviously love your wife so much and sound such a wonderful man, I wish I could help you more.
Do you get any support from Macmillan nurses, district nurses or hospice nurses? Do you get Disability Living Allowance?
Sorry - i sound a nosey busybody but I’m just concerned that you are not getting all the help that you are entitled to. Please don’t feel obliged to tell me anything about your personal circumstances (you never know who is reading this) but I jsut wondered if you were aware of or receiving any help.
all the best
Kate

4

I have posted this on behalf of Terry
Kind Regards
Emma
Moderator
Breast Cancer Care

Hi Wisdens,

Thanks for the info. Yes my wife is on Morphine patches just 75mg ones plus 1800 mg Ibruprofen a day. When she has a good day she is fine all day, tired but OK, it is just the good days are very rare.
I try to get her to walk around the garden or just get in the pool with me ( we are in Spain ) but she does not do that any more.

Sounds like your pain is the same, usually in her left thigh but transits around that area, depends on how long she sit´s or lies.
Thanks again

5

Hi Terry

I am sure it is hard to watch your wife suffer in any way but as dippykate says, thecancer mets can make you feel pretty tired, and also the less you do the less you are able to do. At least you are somewhere warm… we have another rainy day yet again here in England. Just keep up the support as my husband does I am sure it is harder for partners just watching it all.

6

I have posted this on behalf of Terry
Kind Regards
Louise
Moderator
Breast Cancer Care

Hi Kate,

Thanks for your reply. Here in Spain there are not the same resource services, no MacMillan nurses and very few hospices, however Spain is number 3 in Europe for the treatment of BC whilst UK is number 15 !!

All drugs are available to anyone regardless of cost and the hospital services are brilliant, we just use the Spanish NHS and my wife gets scans almost on a monthly basis with no waiting times etc.

I note what you said about Xeloda and the tiredness and dizzy things and yes I read that, perhaps I should have called this thread " Fatigue " what my wife has is unrelenting fatigue, sleep or bed rest does not seem to help, she does have morphine patches as well plus 1800 mg of Ibruprofen a day maybe that it is the mixture that does it but I am sure there are many ladies here that have the same cocktail.

Her blood tests, we are told, are all really good, not anaemic at all, I just cannot understand it !

Thanks again.

Terry

7

I have posted this on behalf of Terry
Kind Regards
Louise
Moderator
Breast Cancer Care

We were talking about that last night, yes it is impossibly hard, Us men, the hunter gatherers, are supposed to protect our families from all dangers. It is really hard knowing there is absolutely nothing we can do to actually cure the ones we love, just help them along with mental and physical support.

As I have said many times to my wife, I signed up for this with the vow " in sickness and in health " so it´s payback time, and I would not have it any other way.
Love to all.

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Hi Terry,

Forgive me if this is totally inane. My partner has bone and liver mets but is not on xeloda so we can’t really compare side effects with your wife. We find that diet helps a huge amount with tiredness. She starts the day with gogi juice mixed with 30 echinacea drops. That really boosts her immune system. We also try to have lots of fresh berries (particularly raspberries) and lots of green vegies. It’s so important to keep the immune system strong and well fed to help tackle the tiredness. Organic food is ridiculously expensive but does have much higher nutritional levels.

You sound like a wonderful support to your wife. She’s lucky to have you.

Swelly1

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Hi Terry - I am an “old expat” from Spain - lived on the Costa del Sol, at Campo Mijas, between Fuengirola and Mijas. Been back in England since 1993 when my Crohn’s disease was a real problem, and I got Leishmaniasis (aka Spanish sand-fly disease) from an elderly cocker spaniel that was abandoned outside our villa. Took a year and some 6 flights to the Hammersmith hospital in London to get this properly dx and was eventually treated at the Tropical Disease Hospital in London. With my compromised immune system, we decided to come home.
Well, I did - and hubby followed although he would have preferred to have stayed in Spain. Neither of us regret the decision for a moment, although we lived in Spain for 8 years.

I was dx with bc in 2003, and thankfully still here. I was very ill when undergoing FEC chemo, and virtually lived under the duvet, living on hospital prescribed Frutijuice for some 4 months. Now, I am back on weekly chemo for Crohn’s,(methotrexate) which I self inject, and am doing okay, but got some blood problems in my bone marrow. I get incredibly tired, just have to sit in a chair and fall asleep. I sleep anything from 10-14 hours at night, but I force myself to keep active around the apartment during the day, as I have a disabled husband of 79 yrs.

I don’t know what complementary services are available these days in Spain (I used to have monthly deep massage therapy at a squash/tennis club near us which helped my tiredness tremendously) but you might care to look into them. I have also had acupuncture when going through FEC chemo. None of these complementary therapies can control cancer, but I have found they do make you feel better able to live with a possible terminal condition.

I don’t know where you live in Spain, but I have a friend in Fuengirola who started the first hospice on the Costa del Sol after her husband died of a brain tumour (she got the MBE 3 yrs ago for her efforts), which is in Benalmadena. I can put you in touch with her if you wish. She may know of other hospices in Spain outside of her area.

I do know how isolating it can be in Spain, when if like me, you aren’t fluent in the language. we couldn’t even get a telpehone for some 2 and a half years. When I was in a private clinic in Malaga for a severe rectal haemorrhage, there was no nursing at all, friends and family were expected to do this, and provide my food, not that I could eat any at the time. Hopefully, It is very different now.

You sound a wonderful supportive husband, and I wish you both well.

Liz.