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I'd like to feel a bit better

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User
Posted 04 Dec 2019 at 13:31

Just to recap: I've had several treatments for metastatic PC over the past 4+ years, with ongoing androgen deprivation. I've just started a course of cabazitaxel. I'm thankful I don't have severe bone pain. What I do have is increasing general achiness/tiredness, in my back, shoulders and limbs. Mobility is becoming a problem, as I can't walk any great distance without my legs aching. However, I can pedal away happily on an exercise bike, and manage some gentle weights to exercise my arms. I was wondering what others in a similar position have found helpful: exercise, massage, or physiotherapy for example? Thanks.

User
Posted 04 Dec 2019 at 19:50

I fully understand how you feel. Despite wanting to do everything that is "normal" after two lots of spinal cord compression, last week I actually felt quite good, so pushed myself a little too hard. My fitbit stats showed I walked 10 miles more last week than the normal 45-50 miles I usually walk. Unfortunately, I must have changed the way I walk as my back is now aching and pain killers won't touch it.

I refuse to be defined by this cancer, but however unpalatable, compromises have to be made. I no longer go for long walks, breaking them up into managable chunks. Still doing whats necessary, but recognising my limitations. Tiredness is a big problem, as is weakness in the legs. A tip with the fatigue from the radiotherapy is to eat a banana before going to bed. Ridiculous, I know, but it really helps getting you through the next day. Quite hard to face some nights.

I too wonder about physio etc, and will make an effort to see about getting local access to this range of services. Eight years with this horrible disease and have not asked help from anyone apart from the doctors, so maybe time to extend my hand for help.

Best regards

User
Posted 30 Dec 2019 at 11:37
We had a chat with our specialist nurse today, and I raised the issue of my achy legs and poor mobility. She thought it might be a side effect of my long-term use of prednisolone, which is part of the chemotherapy regime. Just wondering if anyone else has experienced this.....
User
Posted 04 Dec 2019 at 23:23
One of the things that has come out loud and clear from research and projects on managing fatigue is swimming. Old Al (who was actually in his 50s) was dependant on a wheelchair until he started swimming and it completely changed his life. The PCUK project included it as well
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 04 Dec 2019 at 19:50

I fully understand how you feel. Despite wanting to do everything that is "normal" after two lots of spinal cord compression, last week I actually felt quite good, so pushed myself a little too hard. My fitbit stats showed I walked 10 miles more last week than the normal 45-50 miles I usually walk. Unfortunately, I must have changed the way I walk as my back is now aching and pain killers won't touch it.

I refuse to be defined by this cancer, but however unpalatable, compromises have to be made. I no longer go for long walks, breaking them up into managable chunks. Still doing whats necessary, but recognising my limitations. Tiredness is a big problem, as is weakness in the legs. A tip with the fatigue from the radiotherapy is to eat a banana before going to bed. Ridiculous, I know, but it really helps getting you through the next day. Quite hard to face some nights.

I too wonder about physio etc, and will make an effort to see about getting local access to this range of services. Eight years with this horrible disease and have not asked help from anyone apart from the doctors, so maybe time to extend my hand for help.

Best regards

User
Posted 04 Dec 2019 at 23:23
One of the things that has come out loud and clear from research and projects on managing fatigue is swimming. Old Al (who was actually in his 50s) was dependant on a wheelchair until he started swimming and it completely changed his life. The PCUK project included it as well
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Dec 2019 at 11:05
Thanks Lyn, I shall look into it. The problem is I never learnt to swim properly. Next time we are in the hospital we shall be pushing harder to find out what non-medical support is available.
User
Posted 09 Dec 2019 at 23:06

Re swimming....before getting involved in this prostate business I had fulfilled a lifetime ambition and had individual lessons to learn how to swim freestyle correctly......one of the best things I have ever done....i.e. “swim smooth”. Once all wounds are healed that is my plan ...to swim every day.......great exercise and excellent way to meditate...best to all

User
Posted 30 Dec 2019 at 11:37
We had a chat with our specialist nurse today, and I raised the issue of my achy legs and poor mobility. She thought it might be a side effect of my long-term use of prednisolone, which is part of the chemotherapy regime. Just wondering if anyone else has experienced this.....
User
Posted 01 Jan 2020 at 12:15
OK, New Year will see referral to palliative team, who should be able to give me some help to get my legs working better. I would love to be able to walk a few miles comfortably. Meanwhile, I needed a blood transfusion before 3rd round of cabazitaxel (tomorrow), as haemoglobin down to 8.6. Good news was that after rounds 1 and 2 of cabazitaxel, PSA has reduced by 35% (960 to 600). Can't be bad, especially as bone pain in shoulder has also responded and no longer bothers me.

Happy New Year to everyone. I wish you the best of luck for 2020. I also wish lots of luck, and big research grants, to the scientists and medics working to defeat this thing.

User
Posted 01 Jan 2020 at 13:17

Hi DW, still worth thinking about swimming - it got Al out of a wheelchair and mobile again. After the chemo, obvs. 

Edited by member 01 Jan 2020 at 13:18  | Reason: Not specified

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

User
Posted 01 Jan 2020 at 13:34

Thanks Lyn, my consultant agrees with you. My favourite way to do this is in a private pool in the garden of a villa in southern France, with temperatures in the low 30s, but that will have to wait till summer hols!

Edited by member 01 Jan 2020 at 13:35  | Reason: Not specified

User
Posted 01 Jan 2020 at 13:59

Hi Lyn,

Just reading you post elsewhere about reasonable travel insurance.Planning on short trip to Europe.What company did you use please?

Regards

Norm

User
Posted 09 Jun 2020 at 22:21
Well, the walking wasn’t getting any easier, and a few weeks ago my right leg gave up altogether, refusing to bear any weight and reducing me to the use of 2 elbow crutches to get around. After a few scans (including an MRI which ruled out spinal cord compression) they found I had a pathological fracture of the femur. Two days later and I had a new partial hip! Now learning to get about on it. I am also getting some RT to lumbar 5 at the bottom of my spine, which should ease things up in my lower legs and feet. I’m off the cabazitaxel after 9 cycles, as the scans showed some progression. When I am recovered from the surgery we need to decide where to go next.

So sorry to hear about Valleyboy. I appreciated being able to read his posts and admired his attitude.

 
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