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Exhaustion/weakness

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User

Posted 10 Apr 2019 at 13:47

Hello everyone - intermittent lurker, and now first time poster here.

My husband (63) was diagnosed last summer with metastasised prostate cancer. His Gleason was 9, T4 (spread to spine, bladder, pelvis and lymph nodes) and he had a PSA of 109. He's had six cycles of Docetaxel, has monthly injections of Degarelix and is on the Metformin-arm of STAMPEDE.

The good news is that his PSA has been steadily dropping and is now hovering around 3.1; he has an appointment next Monday for a bone scan and separate CT scan, I assume to check whether any of the tumours have shrunk.

My current concern is that he is so utterly, utterly exhausted all the time. It's now about 5 weeks since his final chemo infusion, yet he is still wiped out. Is this normal? Have any of you had to deal with this, and how can I help him? Can anyone suggest a gentle aerobic exercise routine which worked for them?

He can barely get out of bed, and sleeps a lot. It's a major exertion to simply get up, dressed and downstairs and he is often so weak and wobbly that he can't stand for very long. He has had several falls recently as a result. He's very miserable, and although I do my best to support and cheer him up, it's so tough. Is anyone able to share their experiences please?

User

Posted 11 Apr 2019 at 09:31

Hi Lyn - thank you, I will try and search out some of Old Al's earlier posts.

My husband has been advised against swimming for the time being, as the chemo will have weakened his immune system and apparently public swimming baths are to be avoided until he is stronger. Vicious circle!

User

Posted 12 Apr 2019 at 09:23

Dear Devonmaid,

Everything will be all right ,

Same thing as my father nerve pain , fatigue . only morning time he was energetic after evening he feel pain in arms, legs . Little bit walking he feel fatigue .

regards,

Bose

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User

Posted 10 Apr 2019 at 19:55

What I have learned having had over 3 years of treatments for this disease is that everyone reacts differently to the treatments they are given, be it tiredness, nausia or how well the treatments work. Some treatments works for some and not others, some treatments cause nausia and tiredness for some, not others. On a positive note, there are now many more treatments out there than there used to be due to the pioneers who undertook trials in previous years. Stay positive.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 10 Apr 2019 at 20:04

There was a member here some time ago called Old Al (he was actually in his 50s) - you may be able to find his old posts. He was almostt completely reliant on a wheelchair due to the extreme fatigue he experienced but he was advised to take up swimming and it turned his life around. Good exercise, low impact on struggling joints and muscles.

PCUK were running a course on managing fatigue; Devonmaid’s husband and some others were involved in the pilot. Might be worth you phoning the specialist nurses on the number at the top of this page for advice.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Apr 2019 at 09:29

Thank you Dave - I'm definitely trying to stay positive. As my husband's consultant points out, if he stops responding to one type of treatment there are several other options in the cupboard.

User

Posted 11 Apr 2019 at 09:31

Hi Lyn - thank you, I will try and search out some of Old Al's earlier posts.

User

Posted 11 Apr 2019 at 18:11

A further thought - not all GPs / hospitals think to involve physiotherapy / occupational therapy in these situations. As he is unsteady on his feet and has had a number of falls, he should have been referred to community physio team who should do an assessment, possibly with occ therapy or other allied health professionals. In some areas, there is a palliative physio team and many trusts are setting up falls prevention services.

Ask GP why you haven't been offered anything.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Apr 2019 at 18:12

Absolutely right about swimming too soon after chemo ... verrucas yuck

Edited by member 11 Apr 2019 at 18:13 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Apr 2019 at 20:50

my husband has terrible fatigue, always has had throughout his getting in for nine years of a Gleason 10 with similar spread diagnosis. He did do the fatigue course by PC UK and it essentially is about pacing yourself, so getting up in the morning, doing bits and pieces and napping as needed. Now I can also say that after his recent chemo he was in a very bad way for weeks after his ten sessions but finally picked up the week they started him on Enzalutimide. mind you he has always been anaemic and he is even more so now, so that and his low blood volume plus Enzalutimide accounts for it. We try to get out when he is feeling ok, but he does tire easily and I take him home when he needs it. You don’t say how his blood count is, do you know? I think it helps to know what is going on with the blood results as you can at least account for it. If not, ask for his results and a print off next time. The other thing that causes such tiredness is plain old fashioned depression, this can be helped by the GP. Let’s be honest here, who wouldn’t be depressed by what’s happened? My husband refuses anti depressants even though he knows he’d benefit, and he takes a pain relief drug for nerve pain which is also prescribed for depression and as he is an obsessive medical leaflet reader, he often says to me in a shocked voice that this is being prescribed for that reason and he isn’t taking it. I remind him that at the dose he’s taking, it is prescribed for nerve pain and I used to take for migraine prevention. My hubby doesn’t remember things too well anymore, another symptom of sever fatigue and loss of testosterone and also what they are now calling chronic cancer. Poor men eh?

Apologies for typos but my iPad is now refusing to let me go back and check.

i don’t know if any of this helps, I sincerely hope so and hope also that my husband’s extended survival is a beacon of hope.

with love

Devonmaid xxxx

User

Posted 12 Apr 2019 at 09:23

Dear Devonmaid,

Everything will be all right ,

Same thing as my father nerve pain , fatigue . only morning time he was energetic after evening he feel pain in arms, legs . Little bit walking he feel fatigue .

regards,

Bose

User

Posted 12 Apr 2019 at 10:15

Our local Maggie's did some courses that included fatigue management, it may have been the same as already mentioned.

Thanks Chris

User

Posted 12 Apr 2019 at 20:08

Thank you everyone for your very helpful and insightful replies, and thank you too to Devonmaid as your post resonates a lot with me. My husband has also become extremely forgetful, and this makes him cross and frustrated on top of everything else! I think depression may be playing a part too, which is understandable.

He has a day at hospital on Monday, CT scan in the morning and a bone scan (which takes three hours for the radio-isotope to work its way around his body, so there will be a lot of sitting around for us to do). I am hoping that when we get the results of the scans, it will show that his tumours have shrunk a bit since the chemo (his PSA has had a consistently downward trajectory which will, I hope, mean that the cancer cells are being killed or compromised). Some good news might well help lift his mood.

We are seeing the STAMPEDE nurse on Wednesday, and I will try and get him to open up a bit about how rubbish he is feeling - he tends to shrug and say he's okay which won't get him the help he needs. We have a Maggie's Centre at the hospital and although he's not interested in visiting (it's just not his thing) I am beginning to think I may go and have a cup of tea and a chat there. I'm sure there is help and advice for carers as well as patients.

Thank you again everyone, you have no idea how much it helps just to be able to talk to people who understand.

User

Posted 12 Apr 2019 at 20:20

....... oh, and I don't know his current blood readings. I assume they have always been okay otherwise they wouldn't have given him his chemo infusions every three weeks, but I will ask the question and perhaps ask for a full blood count to be done. At least we would know where we are then.

And yes, nine years is fantastic Devonmaid. I'd take that in a heartbeat.

Thank you again xx

User

Posted 13 Apr 2019 at 16:19

Great idea to talk to the people at Maggie’s yourself, I have spoken on occasion to the team at our hospice, it’s such a help. I also do an annual trip away, a bit extreme for many, a week in Portugal with our daughter, juice only, walking in the mountains and yoga, I feel renewed and able to carry on. Our hospice is wonderful, they know it’s about living with this Illness as much as the end of life period. I don’t know what I’d do without them. John is hugely helped by speaking to our assigned nurse too. I self referred years ago, in panic really. They helped me stay at work for a long time, although eventually I had to stop, far too many appointments and not enough concentration to carry on. I highly recommend getting their help. They’ve also been brillliant with things like a blue badge and PIP.

Lots of love

Devonmaid xxxx

User

Posted 06 Jun 2019 at 12:55

Hello all

I just wanted to log in with a quick update, and to thank you all for your advice upthread.

My husband is still extremely tired, although I can see a definite improvement over the past six weeks or so since his chemo has finished.

We met with his Consultant last week who gave us the brilliant news that there is no longer any sign of cancer in my husband's spine or pelvis, and the tumour in his prostate has shrunk so much that his PSA is down to 2.25 which is practically within the normal range. We are obviously thrilled that the treatment (which was brutal at the time) has appeared to work so effectively.

The worrying thing however is that he now has quite significant liver toxicity - they are calling it fatty liver - and they think this may well be the main cause of his exhaustion. They plan to scan him again in a couple of months to see whether it is repairing itself and in the meantime I am trawling the internet for dietary advice to help him. Any suggestions very welcome! Has anyone else had to deal with chemo-induced liver damage?

Thank you again for all your support, it has been so incredibly helpful.

C J

User

Posted 06 Jun 2019 at 13:51

I don't know about the chemo drugs, but I would not be at all surprised if those could cause Non Alcoholic Fatty Liver Disease (NAFLD) - it's a possibility with many drugs, and those are some of the worse for toxic side effects in general.

Is he on Tamoxifen to prevent breast growth or hot flushes? That also causes NAFLD in about half the women who take it for 5 years (there is no data on men, but you might assume the figure could be similar).

Alcohol can cause Fatty Liver Disease, and I guess they must have asked him about how much he drinks.

There is some research evidence for Green Tea Extract (GTE) having a beneficial effect on NAFLD. However, excessive GTE is also known to cause complete liver failure in a matter of months, so you mustn't take too much.

It's a good idea to check with the consultant if you plan on trying any complementary medicines.

User

Posted 06 Jun 2019 at 14:15

Ooh, thank you Andy. I love an academic paper to read :) I'll certainly read up more on Green Tea extract, thank you very much.

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