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PSA at 25 after only 6 months post chemo

User
Posted 24 Mar 2019 at 17:20

Hi, mu husband, 57, was diagnosed with advanced prostate cancer a year ago. His PSA was 198 at diagnosis with multiple bone metastates & one lymph node affected. His PSA dropped like a stone & after 6 docetaxol cycles was undetectable. 

It was such a shock last week to hear it has risen as he feels so well. He has no back / shoulder pain where the cancer was at it worst. He has a bone scan on Friday & a follow up in a couple of weeks. He has already said he will not be having chemo again just yet if there is any alternative as he desperately wants a summer (& holidays) with our children (18, 15 & 9). 

Im wondering if his testosterone is on the way up despite the hormone injections as he has started to get natural erections again 😯. He thinks Im clutching at straws but I'm fairly certain that isn't supposed to be happening! 

Thanks for reading & apologies for any typos. 

 

User
Posted 25 Mar 2019 at 22:21

Hi my husband very similar diagnosed last April age 58 psa 215 Mets to spine and shoulder and one lymph node. Degarlix monthly 5 blasts of rt to met on t12 then 6 rounds of chemo and luckily we pushed and got rt to prostrate and lymphs just finished 37 daily zaps..... after chemo psa .1 not had a test since December but just started to have back pain again and like your husband a natural erection and like you I'm really worried the ht is failing .....waiting for emergency onco appointment as our next one is in June. Have been told not to do a psa test as rt would affect results. Keep us updated as how you get on and I will update you. 

User
Posted 20 Oct 2019 at 15:03
Maybe a candidate for luetinium too?
User
Posted 30 Oct 2019 at 19:17

I’ve just been reading your update, thank goodness for your vigilance. I wonder whether now is time for more chemo.

its dreadful when young children are involved too, I can’t say anything to take away your worry but I’m so glad that you were listen to and you took action.

love Devonmaid xxx

Edited by member 30 Oct 2019 at 19:17  | Reason: Not specified

User
Posted 30 Oct 2019 at 21:08

If you look at one of my posts re spinal cord compression, I had a tumour pressing on my spinal cord. After 4 consecutive 45 minute sessions I am maybe 80% of my mobility after 5 weeks and it is improving daily.

You should be heartened that your husband did not reach that stage. Just keep excercising and rest when tired, as fatigue can be a big problem.

He'll be back wrestling the kids before you know it!

Best regards

User
Posted 30 Oct 2019 at 21:15

Yes I fear it is time for the chemo. He is resigned to it & not unduly worried as he coped fairly well last time. I worry far more as he’s just not as ‘well’ as he was last time. 

I think he’s also resigned to a shorter prognosis than first given. Hormone treatment & now the abi have just not lasted very long. 

Orm - I’m so pleased you’re recovering from the cord compression. It’s very frightening just at the stage Kev is. His symptoms were almost worsening by the hour so it was very clear something was amiss. Hope you continue to make progress! 

We’ve carved pumpkins tonight with the kids & his older sons are all coming over Saturday morning as planned to watch the Rugby. It always amazes me that even when things are so very tough that life is still enjoyed. 

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User
Posted 24 Mar 2019 at 18:56
What kind of testosterone suppression is he having? It would be a good idea to add testosterone to the things measured at his next blood test, to make sure it’s still in the castrate range. Good luck!
User
Posted 25 Mar 2019 at 08:25
Probably be helpful to add treatment details to your profile. I can understand him not wishing to go through chemo again so soon as it flattened me for about 4 months. Like DW suggests a Testosterone check will indicate if the HT is still working effectively.
User
Posted 25 Mar 2019 at 22:21

Hi my husband very similar diagnosed last April age 58 psa 215 Mets to spine and shoulder and one lymph node. Degarlix monthly 5 blasts of rt to met on t12 then 6 rounds of chemo and luckily we pushed and got rt to prostrate and lymphs just finished 37 daily zaps..... after chemo psa .1 not had a test since December but just started to have back pain again and like your husband a natural erection and like you I'm really worried the ht is failing .....waiting for emergency onco appointment as our next one is in June. Have been told not to do a psa test as rt would affect results. Keep us updated as how you get on and I will update you. 

User
Posted 27 Mar 2019 at 15:38

Thanks for replies. I’ll update profile later. 

He is recieving 3mthly hormone injections. Zoladex I think. 

He had 6 cycles of docetaxol which he coped with brilliantly - minimal side effects. 

He’s started to get a slight ache in his back again which is a worry but he feels the testosterone is climbing. aside from the erections he says he just feels different. 

I guess I would like to know if anyone has ever delayed chemo in favour of quality time? He will have whatever treatment needed but would like a little control back. we deaperately want this years summer holiday for our children whilst he is feeling well. He wants our children to rememver him as the fit, healthy, active man he’s always been. I do worry that as we know his cancer is aggressive (psa 0 to 29 in a few months is not good I know!) that any delay will cause problems. On the other hand he spent last summer going through the chemo for just a few months respite anyway. 

 

sorry for ramble, thinking ’aloud’ I guess.

 

 

User
Posted 27 Mar 2019 at 17:45
Until the last 2 or 3 years,. they woulodn't even have been offering chemo to your OH at this stage - it was kept back for the terminal stages where all other treatments had failed. I don't think it is unreasonable to delay chemo so that you can have a lovely family summer - it is such a new regime that they cannot say with any degree of evidence that 3 or 6 months after diagnosis is greatly better than 12 months. Look for Si_ness who has made similar decisions in the past and is currently a walking miracle.

The erections on their own are not indicative but is he feeling more aroused? If so, it may be worth getting a testosterone test from the GP surgery

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

User
Posted 27 Mar 2019 at 18:48

Sorry not zoladex - decapetyl (sp). 

User
Posted 27 Mar 2019 at 18:59

Thanks Lynne, yes he definitely feels different, more like his old self. He has a blood test next week with the consultant the week after. I’m hoping they offer him an alternative to chrmotherapy if the cancer has reared its very ugly head. 

He’s very lucky (if that can ever be said about anyone with a cancer diagnosis) in that other than the odd twinge he feels really well. He’s still working in his very demanding job full time, playing golf & going to the gym. It sounds rather spoilt to moan about a holiday but given that its looking likely that hormone therapy is failing already I totally see where he is coming from. 

Thanks to everyone who has taken the trouble to reply. I’ll try & involve myself in the forum - seems a very unfirmative place to be.

Caroline  

User
Posted 27 Mar 2019 at 20:12
No, this doesn’t sound like the HT is failing in the way that you mean. Usually when we talk about the HT failing, what is actually happening is the cancer has learnt to survive without testosterone. This is also referred to as being hormone independent or castrate resistant. If his testosterone is rising, then the problem isn’t that the cancer has become castrate resistant, it is that the injection has somehow not done its job in eradicating testosterone from his body. There are a number of possibilities - the last injection was given as a one month dose rather than the 3 month dose, or it had been stored incorrectly, or was from a faulty batch, or had been injected incorrectly.

That’s why a testosterone test would be so useful - if his PSA is rising and his testosterone is above castrate level, they may just change to another hormone. If his testosterone is below castrate level, they might add bicalutimide to disguise whatever testosterone is floating around or they may decide to add enzalutimide or abiraterone. I don’t think additional chemo will be top of the list right now.

As well as the testosterone test, I would be tempted to ask the GP practice to check the dose he was given for his most recent injection.

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

User
Posted 27 Mar 2019 at 20:16
Also worth noting that back pain is a known side effect of decapeptyl
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2019 at 20:17
Sorry - a further thought ... where do they inject him with the decapeptyl?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2019 at 20:44

Thats really interesting Lynne as he normally has a tender injection site (buttock) but last time he didnt. Our 15 year old has a myriad of health difficulties & has had to have testosterone injections (it’s all about thd hormones in this house!) & I know its always been sore because it’s injected deep in to the muscle. I wonder if OH’s injection is the same. 

 

 

User
Posted 09 Apr 2019 at 19:15

Just thought I’d update as DH had his appointment today. 

PSA at 78 & scan shows activity in lower ribs & base of spine. Other areas however still showing improvement. Apart from PSA all bloods show him to be in otherwise good health. 

Had the chemo conversation & he has decided that he would rather try Ariberatone. Hopefully he’ll deal with any side effects well & it’ll do the trick for a while! 

Strangely we both feel better for knowing what’s going on.  That wait is torture every time. I think we are both just exhausted now. It took ages at the hospital to get the meds - it felt like we were taking kryptonite home with all the checking, authorisation for them & collecting from the chemo ward! 

 

 

 

User
Posted 09 Apr 2019 at 22:40

It is exhausting waiting for tests/appointments and getting results.

Hope the Abiraterone works well.

 

Ido4

User
Posted 09 Apr 2019 at 23:32
Hope the abiraterone works and you can enjoy many summers with the kids
User
Posted 07 May 2019 at 10:39

Morning :). Just thought I’d update as Kev has been on the Abi for 4 weeks now. PSA has dropped to 51 from 78. He’s had no side effects other than increased appetite from the steroids. He’s come off of all painkillers & feels very well. 

I think he was hoping for a bigger drop but given that his PSA had gone from 21 to 78 in just 4 weeks that the drop is good news. 

So onwards & upwards for another 4 weeks until the next follow up. 

 

 

User
Posted 13 May 2019 at 20:34
Hi diangled,

Likewise to your OH after first chemo my PSA went down to less than 5. This was monitored for a while and as it rose was put on biculmide, and then enzo. Again my PSA dropped for a while. I did restart chemo but that was after two years. Sure they will try other types of treatment first.

Take it month by month but I know what it’s like waiting for results and consultations.

Best I can advise is go and enjoy your holiday and take it step by step.

All the best

Steven

User
Posted 17 Jul 2019 at 15:21

Just thought I’d update this. Kev’s PSA has dropped to 44 over the 3 months that he’s been on the abiraterone. More important than the number though is that he feels extremely well. So well in fact that I’m typing this from my sunbed in Barbados. We made it to our family holiday 😀!  

Sending good wishes to all. 

User
Posted 18 Jul 2019 at 08:01
Keep up the good work from the sunbed!
User
Posted 20 Oct 2019 at 11:27

After 7 months on Abi it looks as though it is failing already. PSA has been on the rise after dropping to 41 & he has significant back pain which he recognises from before diagnosis. He otherwise feels fit & well. We’ve just returned from a half term Center Parcs break where he joined in the activities as he always has. 

Consultant appointment on Tuesday and expecting a bone scan to be ordered & another round of chemo to be offered. 

Does anyone know if chemo date abi is the gold standard or can radium 223 be offered? 

Thank you :). 

User
Posted 20 Oct 2019 at 15:03
Maybe a candidate for luetinium too?
User
Posted 22 Oct 2019 at 22:06

Had the consultant appointment today & as expected PSA has risen to over 90. A doubling rate of 8 weeks. He’s been prescribed dexamethasone alongside the abiraterone & review in 4 weeks. 

This living in 4 weekly cycles is so draining for us both, but mainly him. It comes around so quickly. 

 

User
Posted 24 Oct 2019 at 04:06

Was reading all your posts going back to March.    My husband’s situation is similar.  On Enza now since June but PSA is on the rise.  Back at Mayo on Friday for scans to see if it has spread.  Doc is talking about clinical trial for immunotherapy if he qualifies, or radium 223.  I empathize with you and this journey.  The regular appts, stress of waiting for the PSA, stress of what scans will show.  Trying something and only getting a few months of result then on to something else.  We are trying to be brave and realistic.  Not focus too much on the future.  We say “every day is new grace”.  We pray a lot.  Next week we leave for Budapest, Vienna, Prague, Berlin.  Regardless of the scans we are living life.  I hope you find treatment that gives your family much more time together.  

SP

User
Posted 29 Oct 2019 at 20:13

Just updating as things have taken a sudden turn for the worse. Kev had an increase in back pain over the weekend. I called the cancer ward on his behalf when he mentioned his leg felt strange yesterday morning. He was seen the same day & nerve blocker pain relief prescribed. 

He had an emergency MRI this morning & called to see consultant this afternoon as results show spinal cord compression. Radiotherapy starts tomorrow. 

This whole thing is an utter nightmare. 

User
Posted 29 Oct 2019 at 23:58

Hi diangled 

I have been reading your thread and can only imagine what a rollercoaster journey you are both experiencing. 

I just wanted to wish you both the very best with your hubby’s most recent diagnosis. This experience is so exhausting for all involved. 

Wishing you love and sending positive thoughts  

SunnyJane xx 

User
Posted 30 Oct 2019 at 13:31

Very big prayers for you both that radiotherapy shrinks the tumor on his spine.  I am so sorry and know how hard this is, the anxiety of bad news and feeling helpless is so rough.  Sending hope your way, some days that is all we have.  

Saint Paul

User
Posted 30 Oct 2019 at 14:06

Thank you so much for kind replies. 

He has been scanned & tattooed ready for planning & radiotherapy tomorrow onwards. I am so pleased I pushed him to make an issue of his pain as whilst it’s very close it’s not quite compressing his spinal cord. Listening to your body & any changes is so important. 

He’s back at his desk working at home & with the nerve blocker meds is feeling very little discomfort. 

Its so exhausting for him & us all. We had to tell the children last night which is never easy. Our youngest is 9 & needs to know that he can’t wrestle Dad like usual. Maybe the zip wiring in Center Parcs last week wasn’t the best idea for him 🙈. 

Thanks again 😊

User
Posted 30 Oct 2019 at 19:17

I’ve just been reading your update, thank goodness for your vigilance. I wonder whether now is time for more chemo.

its dreadful when young children are involved too, I can’t say anything to take away your worry but I’m so glad that you were listen to and you took action.

love Devonmaid xxx

Edited by member 30 Oct 2019 at 19:17  | Reason: Not specified

User
Posted 30 Oct 2019 at 21:08

If you look at one of my posts re spinal cord compression, I had a tumour pressing on my spinal cord. After 4 consecutive 45 minute sessions I am maybe 80% of my mobility after 5 weeks and it is improving daily.

You should be heartened that your husband did not reach that stage. Just keep excercising and rest when tired, as fatigue can be a big problem.

He'll be back wrestling the kids before you know it!

Best regards

User
Posted 30 Oct 2019 at 21:15

Yes I fear it is time for the chemo. He is resigned to it & not unduly worried as he coped fairly well last time. I worry far more as he’s just not as ‘well’ as he was last time. 

I think he’s also resigned to a shorter prognosis than first given. Hormone treatment & now the abi have just not lasted very long. 

Orm - I’m so pleased you’re recovering from the cord compression. It’s very frightening just at the stage Kev is. His symptoms were almost worsening by the hour so it was very clear something was amiss. Hope you continue to make progress! 

We’ve carved pumpkins tonight with the kids & his older sons are all coming over Saturday morning as planned to watch the Rugby. It always amazes me that even when things are so very tough that life is still enjoyed. 

User
Posted 01 Nov 2019 at 12:07
HI Diangled,

Likewise with the mets in the bones during a bone scane it was picked up that I had a cracked and compressed L5 in the spine. Didn't help we were on a remote Scottish isle surfing when I got the call ! I don't know how it happened or if it was the mets but had a sore back for a few months before. A month after that with PSA rising I started the second session of 10 rounds of chemo. Its good the OH is positive about it and I likewise got through it ok.

Looking at your thread is he doing RT at the moment? I was never offered it.

GL and enjoy the rugby.

Steven

 
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