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Roller Coaster Journey

User
Posted 23 Apr 2019 at 13:44

Hello All,

I have been visiting this site since July 2017 when my OH got diagnosed and thought it was about time to say thank you for the help I have found on here! 😊 It has defiantly been a roller coaster of a ride with this disease to say the least, from the horrendous emotional outbursts to the fantastic loving times.

K had no symptoms of PCa but went for his MOT at the doctors and when they did blood tests his PSA came back as 9.5, so then all hell breaks loose with appointments, scans and a biopsy. The results came back as G9 ( 5+4 ), the scans showed several Mets to bones and told us he was T3A N0 M1. The side effects from the treatments have been terrible especially the hot flushes! K now suffers with depression, anxiety and with it being in his spine he has 4 discs pushed out of place.

So far, the treatments he has had;

Zoladex injections every 3 months

6 x Docetaxel sessions started straight away which brought his PSA down to 0.2!

Zometa infusions every 6 weeks started the same time as chemo

The PSA stayed at 0.2 until October 2018 when it went to 0.5, December 2018 0.6, January 2019 1.5

Onco started him on Cabazitaxel straight away but it has been stopped at number 4 because even though his PSA has dropped back down to 0.2 the latest MRI shows that it is now in his neck which is causing a lot of pain, headaches and dizzy spells.

Palliative Radiotherapy starts 25/04/19 for 5 days to his neck to help with pain. Has anyone else had radiotherapy to their neck? What are the side effects?

So far in this journey the PCa seems to be crippling him but his PSA is so low!!??

We are waiting for his next Onco appointment to come through at the moment so not sure what will be next!

Thank you

Edited by moderator 23 Apr 2019 at 13:47  | Reason: Duplicated content

User
Posted 10 May 2019 at 12:58

Just a quick update; Radiotherapy went well, only side effect is difficulty swallowing but seems to be getting better. The headaches and pain seem to have subsided which is great.

Had PSA test week and it has gone up to 0.4 from 0.2 in 4 weeks, Onco wants to bloods every 3 weeks for the 9 weeks to see how much it rises then it will be onto abiraterone.

I have a friend in Florida that has PC and he sent me this the other day, it did make me giggle...hope it makes you smile too;

PROSTATE (COCKROACH) ANALOGY -

Prostate cancer is similar to finding a cockroach in the middle of your kitchen table. You panic, knowing that where there is one there are probably more and they do multiply. You call several exterminators.

The surgeon recommends removal. He'll use a chain saw and remove the kitchen from the rest of the house and repair the plumbing as best he can with what remains.

The external beam radiation exterminator wants to stand outside the kitchen and blast away with a twelve gauge shotgun hoping he will miss the plumbing.

The seed implant exterminator is really slick. He just wants to drill holes in the wall and toss in grenades.

The cryosurgery exterminator wants to drill holes in the walls and pump liquid nitrogen, hoping he doesn't freeze the plumbing.

The hormone guys...well, they just want to pump in sleeping gas. Knowing all to well that in a couple of years the cockroaches will wake up pissed off and hungry.

Chemotherapy boys will offer to poison everything in the kitchen and will promise you that if you eat the poison they will give you an antidote, which may or may not work.

The alternative medicine people will give you a bit of eye of newt and toe of frog plus a couple of other exotic ingredients and hope to hell that chases the cockroaches away.

There are the watchful waiting folks, some of whom are not real sure that there was a cockroach and some of whom think it may have been just an old bachelor roach with no kids that they saw.

Now, if there is only the one cockroach the odds are good--you can get rid of the infestation. However, if the little bugger laid eggs elsewhere or more of his buddies are lurking about in other places...well...you get the picture. In any case, life in the kitchen will never be the same. One of these days an exterminator will come along who just swats the cockroach and puts out poison bait for the others. You'll never know he was there.

Until then, good luck on your choice of exterminators and low or non-existent PSA's to you all.

User
Posted 16 Sep 2019 at 18:35
Fingers crossed that it isn't anything that will stop him from having the Abi - that's a great response!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2020 at 10:38

Hi Christina, your OH sounds an amazing man.  What a journey you have been on together.  

Our very best wishes to you both.

Ange & Keith x

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User
Posted 23 Apr 2019 at 15:02
Has he been offered abiraterone or enzolutamide?
User
Posted 23 Apr 2019 at 15:19

Hi, No other treatments have been discussed accept for the 5 days of radiotherapy. I have a lot of more questions to ask at the next Onco appointment ( again!! Lol ) You know when you get the feeling that we have not been told the whole story??

User
Posted 10 May 2019 at 12:58

Just a quick update; Radiotherapy went well, only side effect is difficulty swallowing but seems to be getting better. The headaches and pain seem to have subsided which is great.

Had PSA test week and it has gone up to 0.4 from 0.2 in 4 weeks, Onco wants to bloods every 3 weeks for the 9 weeks to see how much it rises then it will be onto abiraterone.

I have a friend in Florida that has PC and he sent me this the other day, it did make me giggle...hope it makes you smile too;

PROSTATE (COCKROACH) ANALOGY -

Prostate cancer is similar to finding a cockroach in the middle of your kitchen table. You panic, knowing that where there is one there are probably more and they do multiply. You call several exterminators.

The surgeon recommends removal. He'll use a chain saw and remove the kitchen from the rest of the house and repair the plumbing as best he can with what remains.

The external beam radiation exterminator wants to stand outside the kitchen and blast away with a twelve gauge shotgun hoping he will miss the plumbing.

The seed implant exterminator is really slick. He just wants to drill holes in the wall and toss in grenades.

The cryosurgery exterminator wants to drill holes in the walls and pump liquid nitrogen, hoping he doesn't freeze the plumbing.

The hormone guys...well, they just want to pump in sleeping gas. Knowing all to well that in a couple of years the cockroaches will wake up pissed off and hungry.

Chemotherapy boys will offer to poison everything in the kitchen and will promise you that if you eat the poison they will give you an antidote, which may or may not work.

The alternative medicine people will give you a bit of eye of newt and toe of frog plus a couple of other exotic ingredients and hope to hell that chases the cockroaches away.

There are the watchful waiting folks, some of whom are not real sure that there was a cockroach and some of whom think it may have been just an old bachelor roach with no kids that they saw.

Now, if there is only the one cockroach the odds are good--you can get rid of the infestation. However, if the little bugger laid eggs elsewhere or more of his buddies are lurking about in other places...well...you get the picture. In any case, life in the kitchen will never be the same. One of these days an exterminator will come along who just swats the cockroach and puts out poison bait for the others. You'll never know he was there.

Until then, good luck on your choice of exterminators and low or non-existent PSA's to you all.

User
Posted 11 May 2019 at 10:32

Wonderful!

That deserves a thread of its own! ("The Cockroach Theory of Prostate Cancer") 

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 14 Aug 2019 at 12:10

Well for the past couple of months the PSA has been slowing rising and after seeing the onco last week they want OH to start Abiraterone on Friday 16.08. 

Is there any significant side effects we should look out for? If so is there anything we can do to make them bearable?

He already suffers so bad with fatigue, hot flushes and bad memory from the Zoladex implants. 

Also is anyone on Abiraterone and are having Zometa infusions as well? If so if having the 2 treatments cause any problems? I'm only asking this because when he had cabazitaxel and Zometa at the same time it cause OH to have major pain and he had to stop the Zometa for a while.

 

Many Thanks

User
Posted 16 Aug 2019 at 07:12
Just bumping you back up the list, I believe ABI is well tolerated and effective but hopefully someone on it will confirm
User
Posted 16 Aug 2019 at 09:08

Thank you 😀

User
Posted 16 Sep 2019 at 13:06

Well its been 4 weeks of being on AbI and PSA has dropped to 0.5! He has not really suffered any major side effects and feels great. He only downside to the onco appointment was apparently his kidney results were not that good and they are investigating if the kidney's or muscle's are deteriorating. He will have to have weekly blood tests for the next 2 weeks to see what happens. 

Everything with this cancer seems to one long waiting game and when you think its finally going in the right direction something else pops up!

User
Posted 16 Sep 2019 at 18:35
Fingers crossed that it isn't anything that will stop him from having the Abi - that's a great response!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 10:14

A bit of a rant!! Well what a start to new year!!! PSA has been slowly rising and had onco appointment on the 2/1/20 for Abi review. She wants him to continue with Abi until the 30/1 and to continue with Zometa every 4 weeks. I asked what treatment would be next and she stated there is nothing else!!! So I suppose we just watch the PCA take over and watch him deteriorate  ??? I thought there would of been another treatment in the toolbox at least!

He had his Zometa on the 2/1 as well and normally he gets pains in his spine and chest and it only lasts for about 72hrs but this time round the pain is considerably worse and still ongoing...... was up with him until 3am this morning even after taking 20mg Zoramorph, 500mg Naproxen!! 

User
Posted 27 Mar 2020 at 09:31

Morning All, well we had our consultant meeting yesterday, PSA is now up to 2.8. She want's him to stay on the Abi because she thinks that if he comes off the treatment the PSA will rise a lot faster. He is still having Zometa every 4 weeks to help with the pain but at the moment he is on 30mg of Zoramorph morning and night which seems to helping to control the pain. She stated again that there is no other treatment to have, so really gutted at the moment, he has so more fight left in him. To look at him you would think nothing is wrong, he is still the joker in the family and he refuses to let the cancer get the better of him!! I have to applaud him on his mental ability with this.

I hope you are all staying safe with this COVID 19!!! I thought it was hard to keep the girls entertained while off school but keeping him busy is proving hard!!! LOL

User
Posted 27 Mar 2020 at 10:38

Hi Christina, your OH sounds an amazing man.  What a journey you have been on together.  

Our very best wishes to you both.

Ange & Keith x

 
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