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User
Posted 19 May 2015 at 18:54

Not sure if this is the right tag to write on; but I just need to bounce some thoughts off others who may have been experiencing similar experiences.

I have been a member for some time, but rarely contribute to the forums for various reasons.

Diagnosed with advanced PC, I have been getting noticeably weaker, and since March this year have felt ill nearly every day.

I had been feeling remarkably well, and had applied to do voluntary work for a local hospice.  One week later I was a feeble, weak and nauseous wreck.

One notable incident was that I had been prescribed a drug known as Levomepromazine; this horrid treatment caused hallucinations, nightmares, phobias and irrational behaviour.    I stopped taking it, but since that time I have felt mostly tired, weak, sleepy and generally ill all of the time.

I have come to terms with this to a degree, and have resisted the urge to do energetic tasks; I also rest a little more, and take the odd nap during the day.

Currently on Dexamethasone, my oncologist now wants to wean me off steroids altogether; however the same happened last year, and I felt quite poorly so was put back on it.

I've also started Fluoxetine to help with depression; which the doctors seem to agree is contributory to how I'm feeling.

This last weekend I developed strong tingling to feet and hands, and a nasty kind of adrenalin taste in my mouth. I was extremely tired and weak, and could do little except sleep or just rest.  It lasted for 4 days, and has been almost unbearable.

Even sitting up in a chair without head support was impossible.

To complicate issues I am supposed to refer to my own GP for any issues, but then I see my oncologist monthly, and usually get conflicting advice. I then attend a weekly session at my hospice, where the doctor there gives further advice; but in all this nobody has been able to give a definitive reason for the way I feel.

At present, I have no idea whether the symptoms were due to reaction to medication, or whether they are a sign of worsening condition.

Though I seem to have improved a little today, I'm by no means well, and am beginning to get a little despondent.

Has anyone else had the same kinds of symptoms (e.g. kind of pins and needles to feet, weakness mostly to legs, general feeling of extreme tiredness, lack of concentration, nausea).

If so I'd be interested in sharing information and ideas.

Thanks.

User
Posted 19 May 2015 at 21:11
Otto

I am responding because you need support, even though I don't know what's causing these issues. It must be very frightening for you, even more so when the doctors don't seem to know what is causing your troubles. Have they checked the usual suspects, bloods ok etc? It does sounds as though a drug may be causing a reaction, or a drug reacting with another, GP is the best to determine that. John has been increasingly breathless but his peak flow is excellent so we can only conclude it is one of the many meds he is taking, it does make life miserable at times.

I just wanted to reach out to you, you sound despairing.

With love

Allison xx

User
Posted 19 May 2015 at 22:33

Hi Otto,

I can not help with your predicament as I have no experience or knowledge of where you are and what stage you are at. But, like Allison I wanted to let you know that you do have support here.

If you have come to accept that you need to rest every now and then, maybe more so than before, then that has to be a good thing. No point pushing an already tired body about and getting even more tired and frustrated.

Do you keep a diary of when the various symptoms appear and fade away? Perhaps if you did this, and also kept a diary of what you eat and what you are, or were doing at the onset of the symptoms it may help others determine what's going on? Maybe not? But, if you keep a record it may just shed some light?

Just a thought?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 20 May 2015 at 00:17

Otto

Can't help directly, but you need an explanation. Hope you're able to find it, and someone on here can point you in the right direction.

Paul

Stay Calm And Carry On.
User
Posted 20 May 2015 at 14:56
Otto

You have been fighting with PCa for a long time I see even though the diagnosis was of an aggressive strain.

The long term use of HT and possibly steroids may be causing you to feel so weak and tired. You have said you have metastatic spread to bones and lungs but you have not indicated what your blood results are showing.

With bone mets you may be generating too much calcium this causes fatigue and other side effects like pens and needles or tingling sensations. Have you ever been offered Zometa infusions or Denusomab injections to try and keep your bones stronger?

What other treatments have been considered like chemo or other medications.,?

I am sure with a bit more information there would be someone who can give you some more specific advice.

Best wishes

Xx

Mo

User
Posted 21 May 2015 at 19:34

Thank you for your replies and advice.

I have to come to the conclusion that my condition has progressed, and that I may have to accept that I'm not going to feel as well as I did prior to the flare up last weekend.

I'm due to have the Zometa treatment in 2 weeks, and that may possibly help a little.  I'll get to see the oncologist as well, so maybe I'll be given some other options; but I'm not confident.

Once again, thanks for responding; it make s a big difference when people show they care.

Paul.

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User
Posted 19 May 2015 at 21:11
Otto

I am responding because you need support, even though I don't know what's causing these issues. It must be very frightening for you, even more so when the doctors don't seem to know what is causing your troubles. Have they checked the usual suspects, bloods ok etc? It does sounds as though a drug may be causing a reaction, or a drug reacting with another, GP is the best to determine that. John has been increasingly breathless but his peak flow is excellent so we can only conclude it is one of the many meds he is taking, it does make life miserable at times.

I just wanted to reach out to you, you sound despairing.

With love

Allison xx

User
Posted 19 May 2015 at 22:33

Hi Otto,

I can not help with your predicament as I have no experience or knowledge of where you are and what stage you are at. But, like Allison I wanted to let you know that you do have support here.

If you have come to accept that you need to rest every now and then, maybe more so than before, then that has to be a good thing. No point pushing an already tired body about and getting even more tired and frustrated.

Do you keep a diary of when the various symptoms appear and fade away? Perhaps if you did this, and also kept a diary of what you eat and what you are, or were doing at the onset of the symptoms it may help others determine what's going on? Maybe not? But, if you keep a record it may just shed some light?

Just a thought?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 20 May 2015 at 00:17

Otto

Can't help directly, but you need an explanation. Hope you're able to find it, and someone on here can point you in the right direction.

Paul

Stay Calm And Carry On.
User
Posted 20 May 2015 at 09:31

I'm Listening Otto, but like the others can't offer a practical solution to your problems.

Have you tried speaking to the oncologist's secretary, listing how you feel, with a list of medication or advice given to you by your GP, and asked her to speak to him for you. He may offer advice on how to proceed.

Have any of your care team, be it hospital, hospice or GP, done a full range of bloods to see if anything shows up.

They may just all be assuming the way you feel is down to medication but could it possibly be something else that is being camouflaged ?

Best Wishes and I hope somebody on here can offer you more relevant knowledge.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 May 2015 at 14:56
Otto

You have been fighting with PCa for a long time I see even though the diagnosis was of an aggressive strain.

The long term use of HT and possibly steroids may be causing you to feel so weak and tired. You have said you have metastatic spread to bones and lungs but you have not indicated what your blood results are showing.

With bone mets you may be generating too much calcium this causes fatigue and other side effects like pens and needles or tingling sensations. Have you ever been offered Zometa infusions or Denusomab injections to try and keep your bones stronger?

What other treatments have been considered like chemo or other medications.,?

I am sure with a bit more information there would be someone who can give you some more specific advice.

Best wishes

Xx

Mo

User
Posted 21 May 2015 at 19:34

Thank you for your replies and advice.

I have to come to the conclusion that my condition has progressed, and that I may have to accept that I'm not going to feel as well as I did prior to the flare up last weekend.

I'm due to have the Zometa treatment in 2 weeks, and that may possibly help a little.  I'll get to see the oncologist as well, so maybe I'll be given some other options; but I'm not confident.

Once again, thanks for responding; it make s a big difference when people show they care.

Paul.

 
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