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And so it starts again!

User
Posted 15 September 2016 12:09:04(UTC)

Hi to anyone reading this. In May 2014 I got married to a wonderful lady, since then, she has become my rock. Four weeks after our wedding I started to have an irritating but mild back ache, no pain killers would ease it, anyway, two weeks on, I was told I had a gleason 9 prostate tumour, my PSA was above the norm but still fairly low at 14.75, they told me I needed immediate action. 

I went into Addenbrookes hospital where the Da Vinci robot removed my prostate, nerves and lymph nodes, after lab examination, the pea size tumour was contained in the gland, all within margins and nerves and lymph nodes were clear, everyone seemed pretty happy with the results. My first PSA showed a small presence, the next one more, it turned out to be doubling every 2 to 3 weeks. I did some internet research and found that my gleason with the doubling time so soon after the surgery indicated a poor prognosis.

Anyway, Addenbrookes scanned me again and found nothing, I was put on hormone drugs and given 4 weeks of radiotherapy targeted at the prostate bed. My first PSA came back undetectable, second the same. The consultant was very pleased, my new wife overjoyed. The PSA results continued to come in as undetectable, my PSA nurse said one more 3 monthly test and we will move to 6 month results. Twelve months on from the radiotherapy, I developed a dry chesty cough, my gp suggests a few blood tests and my PSA came back at 0.18, there was some irony to this figure as it was the same as the first result after my surgery, which then doubled very quickly.

During the treatment after surgery, I found I was having problems with my speech, swallowing food and breathing, everyone thought I had had a stroke during the surgery but scans showed nothing. a few months later it was found that the drugs had triggered an incurable neurological illness called Myasthenia Gravis (MG), this is where the immune system attack normal signals from the brain stopping muscles from functioning, I now take medication to try to control this.

Before my cancer and MG was diagnosed I used the gym five days a week, Monday to Friday for about 2 hrs each session, I still do this regularly in order to keep positive but it is a fine balance in taking my drugs at the right time in order that I an achieve it.  Today I have another PSA result to confirm the latest rising reading, my lovely wife is leaving work early in order to join me to collect the result. I have held her as she cries and she comforts me as my mood lowers. I hate this disease, this cancer, it takes then it gives back a little and then it rips it all away but rest assured I will fight this sadistic thug until my last breath, whenever that may be. Good luck to all on this site.

User
Posted 15 September 2016 20:02:26(UTC)
Hi BS ,
I am guessing that as you Are at Adeenbroks you are fairly close to us. We were initially at Addenbrooks but have now moved to Peterborough. Trevor was diagnosed in 2013 with a very high PSA and ext Mets and pretty much no hope but here we are in 2016 and still going , OK with options running out But Still Going I often wonder if it would be worse to have hope and then the rug pulled from under you is worse than facing a terminal prognosis from the start.
We have had a rough ride in places but as I said still here and giving it Rock on Tommy.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 2 times
User
Posted 16 September 2016 09:47:20(UTC)
BS
I like your handle bit of a tribute maybe?

So sorry to hear that you have had all the problems that you have, your wife sounds fabulous and just so happy she is your rock as you say.

MG is a very rare condition but the link to your antibiotic is much, much more likely than Bicalutamide. Like Johsan I too have an auto immune problem and Ciprofloxacin along with several other antibiotics are on my alert card as "not to be given"

You say you and your wife have given up on your sex life, if you really are happy as you are, then ignore the next bit.

Your Wife sounds so understanding and lovely but it is sadly all too easy for a Woman to just switch things off if she genuinely believes that is what her Man wants. After all just having you alive and there to love is sometimes enough. Also there is really nothing much that can be done if you have lost your desire or libido altogether as sometimes happens, other than perhaps providing whatever intimacy you can knowing that it is solely for your Wife's pleasure. However, you may want to read an ongoing thread called Ercting the erection- Medication by Johny. Lots of information in there from a wide range of Men and some women on their experiences with ED. Some of them waited a long time and went through many frustrating times to get things that worked for them. Not giving up and being totally honest and open with each other and themselves has been rewarded for many of them, especially as new drugs and usage routines are emerging. Also some useful and innovaive ideas on things you can try after taking the appropriate advice from an ED specialist first.

I really wish you both all the best

xx
Mo
Thanked 1 time
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User
Posted 15 September 2016 16:46:51(UTC)

Hello BS and welcome to you and Mrs BS.

You're right that this can be a right b*****d of a disease but you have the right attitude.

I can't advise you on doubling times etc (although I would say that Google may not be your friend as the information isn't always relevant to your situation and can be very frightening if taken out of context)

Please come back to us with the results from today and I am sure somebody with more knowledge than myself will be able to talk to you.

You are so fortunate to have such a supportive and loving wife, not everyone can say the same. It's a hard road for us wives to follow as we watch our men suffer.

Fate deals some rotten hands sometimes and you appear to have been unlucky enough to be a recipient.

Keep poking your prostate cancer in the eye !!

*******

We can't control the winds - but we can adjust our sails
User
Posted 15 September 2016 16:59:32(UTC)

I'm so sorry that this has happened to you and I really admire your strength and courage.
It has mega worried me actually. My profile is nigh on identical to yours except I had bladder and lymph node involvement. Very rapid post op PSA rises. I refused RT. Been on HT but stopped to let PSA rise in hope of finding spread via a PET scan.
What scared me ??
Dry cough - yes
Breathlessness - yes
Been telling my wife I can't swallow for weeks. Food just stopping half way down.
I wish you luck
Chris




If life gives you lemons , then make lemonade
User
Posted 15 September 2016 20:00:31(UTC)

Such rotten luck Bs,

Do you feel you can tell us which drug(s) were thought to be responsible for your MG and do you have an idea of the percentage of men affected this way?

Barry
User
Posted 15 September 2016 20:02:26(UTC)
Hi BS ,
I am guessing that as you Are at Adeenbroks you are fairly close to us. We were initially at Addenbrooks but have now moved to Peterborough. Trevor was diagnosed in 2013 with a very high PSA and ext Mets and pretty much no hope but here we are in 2016 and still going , OK with options running out But Still Going I often wonder if it would be worse to have hope and then the rug pulled from under you is worse than facing a terminal prognosis from the start.
We have had a rough ride in places but as I said still here and giving it Rock on Tommy.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 2 times
User
Posted 15 September 2016 20:10:15(UTC)

Hi John and Sandra, thanks for the reply. My wife arrived today and we drove to the surgery to get our results, it was closed for the afternoon for a training day. My wife was not happy as they had told me to arrive late afternoon to get the results. Anyway, I have a more relaxed approach than my wife, what will be will be and collecting the results tomorrow morning after the gym will make little difference.

My wife has been amazing considering that 8 weeks from our marriage our sex life ended, they have tried numerous drugs to help me but nothing really works...we eventually gave up. I will post my results tomorrow.

I now look forward to going through all the bone scans again etc in order to find where this b*****d has found a new home. I am now considering full castration as my next point of call, as the hormone drugs can have an adverse affect on my myasthenia gravis...life is fun and certainly has its ups and downs!

User
Posted 15 September 2016 20:15:45(UTC)

Hi Julie, yes I understand what you mean, I suppose you learn to cope with bad news and manage each day. Being given hope and then have it pulled away from under you leads you into low moods but at the end of the day we are all fighting the same battle, the one to survive as long as possible. Give my best wishes to Trevor..fight on and even if we cant win, we can give it a bloody nose!

User
Posted 15 September 2016 20:32:31(UTC)

Hi Barry, no one is completely certain which drugs triggered the condition, I was on Bicalutamide and an antibiotic called Ciproflaxin to deal with a post operative infection . Its a rare condition and shows itself usually when the body is tired or stressed. My first symptoms were my right eye started to close late in the evening, followed by choking when eating food, eventually my speech became slurred and I struggled to breath when walking. It took a couple of months to the diagnosis and I was then put on a kind of brain stimulant drug to increase the signals from my brain and a steroid to increase muscle receptors, the idea being that more brain signals with more muscle receptors should mean that some get through the immune system that is attacking the signals...eventually they put you on a drug that strips your immune system but I declined this as it can allow further spread of cancer. I don't think its a condition linked directly to prostate cancer but I do know that after a chat with the specialist nurses on this site that they have experienced callers with the same condition and they know that hormone drugs can exacerbate the condition. Hope that helps, please don't worry about the condition, you have to have it lying dormant in your body for it to be triggered and as said, I don't think it is directly linked to prostate cancer, I was just unlucky I guess.

User
Posted 15 September 2016 21:02:45(UTC)

Hi Chris, thanks for your reply. See my reply to Barry for more details of the MG condition but I'll explain a bit here too. It appears that the condition lies dormant in the body and a number of things can set it off, I'm not an expert but have done a fair amount of research since being diagnosed. MG makes your immune system get confused and as a result it attacks the signals from the brain that are sent to operate muscle function. In my case it started to show itself after I was put on Bicalutamide and an antibiotic called Ciprofaxin for a post op infection, no one can say for certain if this was linked. My first symptoms were late in the evening, I would struggle to keep my right eyelid open, it would just droop, I then found that if I ate around 7pm, I would randomly start choking on my food, it was as if it was stuck in my throat and windpipe. We finally realised that something was wrong when we went out one evening and I was in conversation with friends and I could not speak without slurring. At this point my gp referred me to the stroke clinic who could find nothing wrong. My gp referred me to a neurologist but the wait was 4 months so we paid privately for a consultation, he examined me and within minutes said he believed I was suffering from Myasthenia Gravis and that I needed to be in hospital now. He called through to an NHS hospital and I was rushed in that evening where blood tests confirmed the dangerous antibodies in my blood. It appears that if not treated it can lead to MG crisis where the muscles of the lungs stop functioning. Anyway, a range of drugs later and everything is under control. The condition cannot be cured but can go into remission, sometimes permanently or for months/years.

First of all, please do not be alarmed, I am told it is a very rare condition and as far as I am aware, it is not directly linked to prostate cancer.

The symptoms in my case were;

Eyelid drooping in the evening or constantly twitching during the day

Difficulty swallowing food in the evening

Slurred speech when talking for a long time

Breathlessness when climbing stairs or inclines

If a person has only a couple of the above then there could be many other causes and it may have nothing to do with MG.

Hope this helps.

 

 

User
Posted 16 September 2016 04:38:48(UTC)

I have it noted on my medical records that I am not to be given Ciprofloxacin.

I have joint and muscle problems including peripheral nerve damage and although the medical profession will not admit to it, Ciprofloxacin is known to trigger these conditions and as they may not appear for some time after you've finished taking it the correlation between drug and later condition tends to be overlooked.

In your case the MG was as you say probably lying dormant but I wouldn't be at all surprised if Ciprofloxacin wasn't your trigger.

******

We can't control the winds - but we can adjust our sails
User
Posted 16 September 2016 09:47:20(UTC)
BS
I like your handle bit of a tribute maybe?

So sorry to hear that you have had all the problems that you have, your wife sounds fabulous and just so happy she is your rock as you say.

MG is a very rare condition but the link to your antibiotic is much, much more likely than Bicalutamide. Like Johsan I too have an auto immune problem and Ciprofloxacin along with several other antibiotics are on my alert card as "not to be given"

You say you and your wife have given up on your sex life, if you really are happy as you are, then ignore the next bit.

Your Wife sounds so understanding and lovely but it is sadly all too easy for a Woman to just switch things off if she genuinely believes that is what her Man wants. After all just having you alive and there to love is sometimes enough. Also there is really nothing much that can be done if you have lost your desire or libido altogether as sometimes happens, other than perhaps providing whatever intimacy you can knowing that it is solely for your Wife's pleasure. However, you may want to read an ongoing thread called Ercting the erection- Medication by Johny. Lots of information in there from a wide range of Men and some women on their experiences with ED. Some of them waited a long time and went through many frustrating times to get things that worked for them. Not giving up and being totally honest and open with each other and themselves has been rewarded for many of them, especially as new drugs and usage routines are emerging. Also some useful and innovaive ideas on things you can try after taking the appropriate advice from an ED specialist first.

I really wish you both all the best

xx
Mo
Thanked 1 time
User
Posted 16 September 2016 16:04:03(UTC)

Hi Johsan,

Yes I think you are right, most MG sites list Ciprofloxacin (glad you could spell it as I couldn't really remember its name in my earlier post..lol) as a possible trigger. As you would expect though, no one actually wants to state it officially. Anyway, now its triggered life has changed somewhat but we carry on regardless.

Best wishes and keep fighting.

User
Posted 16 September 2016 16:29:40(UTC)

Apparently in America there are lawsuits going on and the manufacturer (Bayer?) has now put black warning boxes on their version of the drug.

I'm not even interested in suing but I would like a definite confirmation that what I have is real and the result of taking the drug. At least when the pain is bad I'd know there was a reason for it and not all in my head!

I was quite relieved to see Mo confirming it too so I know it's not just me!! (Thanks Mo)

I did read on several sites that Cipro is prescribed quite frequently for prostatitis and Prostate cancer irritations and I also saw somewhere that it can cause Myasthenia Gravis but can't remember what site it was.

*******

We can't control the winds - but we can adjust our sails
User
Posted 16 September 2016 16:31:36(UTC)

Hi Mo,

thank you for your message and yes, as you say, it was likely to be the Ciprofloxacin that triggered my MG condition, but as you would expect no one wants to confirm as such. Antibiotics have strange effects on people, Oxytetracycline is also recognised as a trigger and I have had to take this drug for the past ten years with little side effect.

The sex life has been a difficult one, prior to the surgery my wife and I had a very good physical side to our relationship. I have tried all of the drugs and equipment but with little effect. I was also left incontinent which doesn't really help the situation. I think the problem is that my head still wants sex but my body fails to function, perhaps that is why I am looking at my next option as full castration, to take away the desire completely and also starve the new tumour of testosterone. My wife is happy to have me here, for how long, who knows...we are just enjoying each others company.

God bless and give all people suffering from whatever ailment, the strength and power to battle on.

Blazingsaddles (Steve)

User
Posted 19 September 2016 10:05:05(UTC)

Hi Johsan,

I have noticed myself that a number of antibiotics drugs now have warnings on the internal leaflet that advice should be taken if you have MG. As part of the MG treatment I was put on steroids for 12 months (Prednisolone), I put on 2.5 stone in weight even though my wife put me on a special diet. Then I got called for a diabetes test and was told I was now borderline type 2. I decided I had had enough and slowly came off the steroids. Within weeks of stopping I could not walk because of the pain, I had joint pain in my toes, ankles, shoulders...x-rays showed arthritis had formed and bone spurs in the lower foot and heels. I had never suffered from anything like this before the drugs. Anyway, they then discovered that my body was now producing high levels of uric acid, the foot arthritis suddenly became severe gout. I now have to take drugs to lower the uric acid but am still left with the arthritis....and of course the prostate cancer! 

Some times I just want to throw all the drugs in the bin and start from scratch again..but I guess its too late for that.

 

 

 
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