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Newly diagnosed with metastatic prostate cancer

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User
Posted 25 Apr 2017 at 13:36

Hi my husband has just been diagnosed. PSA over 1000 and it has spread to bones and nymph nodes. He has been started on hormone injections. We see Oncologist next week and want to know what sort of things may be offered and how others have coped with various treatment. 

User
Posted 25 Apr 2017 at 16:38

This is the reply I just gave to someone else in a similar situation.


The best thing to begin with may be to ask the oncologist to explain the full diagnosis to you, and just listen carefully. Take notes to help you remember the important stuff later. Unless it is covered by the oncologist, I would then ask
- exactly which bones is it in
- what is the treatment plan and why - is early chemo being offered, for example?
- is there anything they can give your OH to strengthen his bones
- if there are any mets in the spine and spinal cord compression might be a risk later, ask them to explain the signs of SCC to you so that you always know the danger signs
- any dietary advice (which may depend on the treatment plan)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Apr 2017 at 20:58
Hi hiitsme,
Firstly I just want to say welcome and yes those stats are pretty scary I am not going to lie to you. So after saying that I am going to give you the flip side here we are 4 years on the 1st May with a starting PSA of 13000 ! Mets in rib, pelvis , spine and lymph nodes . Just about every treatment other than chemo ( Trevor has got heart issues ) so chemo is for us a last resort.
Today he has done the school run and hopefully tomorrow if the weather holds with a lot of persuasion from me he might well be on our ride on mowing the grass. Please always stay strong don't listen to worst case scenarios.
There are so many options these days in treatments , when Trevor was first diagnosed as terminal we never thought for one moment that he would still be here 4 years on but here he is still going strong .
Sending huge hugs.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Apr 2017 at 13:36

Hi my husband has just been diagnosed. PSA over 1000 and it has spread to bones and nymph nodes. He has been started on hormone injections. We see Oncologist next week and want to know what sort of things may be offered and how others have coped with various treatment. 

User
Posted 25 Apr 2017 at 22:45

The PSA is rather immaterial now - more important to look at other people diagnosed with similar spread patterns. There are a number of men on here that have had docetaxel and are doing very well - look at Si_ness and irun who have similar spread. ColU_FC has been keeping a blow by blow account of his chemo on here which you may find helpful. Also look up Trevor Boothe who was diagnosed with a PSA of 13000 and is still here some years later.


Make sure you get the information about SCC - too many men end up with limited mobility or even paralysed because no-one warned them what the symptoms were.

Edited by member 26 Apr 2017 at 00:17  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Apr 2017 at 07:23

Hi, I was diagnosed in Feb 17 with extensive bone mets and PSA 1500---at the time I had no idea there was anything seriously wrong with me. I had just come back (end of Jan) from a "boys" golfing break in Spain, and all I was really suffering with was general aches and pains, and a headache, which I put down to old age catching up with me, (64), golf several times a week and general maintenance of a very large garden/plot. However following some excellent and quick initial treatment by the NHS I soon had a prostate biopsy which confirmed PCa followed by x-rays, ultrasound, a CT scan, MRI and a bone scan to identify spread. I started hormone therapy on the same day as I had the biopsy, and other than regular sweats, ( male menopause symptoms), I'm doing ok. I've also just about completed my 1st (of 6), cycle of chemo with my 2nd cycle starting next week, and again so far only one bad afternoon where I felt completely drained and wiped out. Other than that I'm still walking and cycling regularly, although I have been advised not to play golf until chemo ends, which is a pain!!! As an aside I've also completely changed my diet, no red meat or processed food, and very limited dairy products, which has now been replaced by loads of soy products, veggies, fruits, and vegetarian substitutes, plus still eating fish and chicken, and whilst I'm definetly missing my regular bacon/sausage butties I've lost 2 1/2 stone, ( which was needed), and feel much better for it? Just wish I'd done it years ago without the illness prompting it?? Anyway hope this helps and if you need anymore info from this "newbie" then check out my "the road ahead--valleyboy" blog on this site. No one knows what the future holds but I hope everything works out ok for you and yours, all the best J.

User
Posted 04 May 2017 at 13:14

Just an update. Saw Oncologist Tuesday who is suggesting Docetaxel 6 sessions every 21 days. The plan had been for an appointment next week to check and sign for it but his spine may need an operation first. It seems T6 vertebra has collapsed and may need Kyphoplastry for which we have been referred to a different hospital next week. So we now expect to have another appointment with the same Oncologist in 2 weeks time to arrange the timings for Docetaxel. Since then he has now had a CT scan. Also told yesterday his PSA levels are down from over 1000 to 30 - this is less than 2 weeks since the first hormone implant which I assume is good news that it is working.

User
Posted 29 Jun 2017 at 09:03

Docetaxel started yesterday. So far all seems fine and my husband has gone to work today which is what he wanted. I thought I had read through everything I could find on this but had not come across Filgrastim injections. Has anyone else had them? They are to be given for 5 days starting on day 4 to reduce the risk of blood counts going low.

User
Posted 06 Jul 2017 at 11:18
Oh that sounds scary, but thank goodness he was admitted just in case.. I think this highlights the point about working during chemo as you are very suseptible to infection and public transport in particular is a hive of germs. I hope he is back home very soon.

Love
Devonmaid
User
Posted 24 Jul 2017 at 10:44
Hi hiitsme
Your journey has been almost a mirror of mine. Was diagnosed Sept 2016 PSA 1000+, Gleeson 9.5. Hormone therapy started straight away, with a PSA down to 130 within six weeks. Started chemo (Docetaxel - 6 session, three weekly) PSA went to 0.15 after two sessions; having had a scare with very low white blood cell count along the way. But developed anal abscess that became a fistula and need surgery to correct (ouch!). After surgery was fully healed chemo was suspended as it was thought that the remaining sessions wouldn't be helpful but I stayed on the hormone therapy.

A blood test in March revealed that my PSA had risen to 11 and it was decided to resume chemo again. As they also wanted to start injections to support metatistised bones I needed to have an abscessed tooth removed; this took three weeks to heal. Having started chemo again I've just had the second cycle to this new regime and my PSA has risen to 31. Obviously this is very disappointing but I'm hoping that all these new interventions will get on top of it but only time will tell. Feeling good at the moment and I'm sure it will come around eventually.

Hope this helps in some way and underlines that it's not a straightforward journey for any of us. Best of luck and best wishes for your on-going journey.

Boyd
User
Posted 09 Aug 2017 at 20:42

Chemo 3 went ahead as planned today but sticking to the lower dosage as last time. PSA on 25th July was 2.8 so that is really good news. From over 1000 to 2.8 is a great reduction in 6 months.
Also added Zoledromic acid to help with the bones.
No real side effects from Chemo this time so hopeful that will continue.

Show Most Thanked Posts
User
Posted 25 Apr 2017 at 16:38

This is the reply I just gave to someone else in a similar situation.


The best thing to begin with may be to ask the oncologist to explain the full diagnosis to you, and just listen carefully. Take notes to help you remember the important stuff later. Unless it is covered by the oncologist, I would then ask
- exactly which bones is it in
- what is the treatment plan and why - is early chemo being offered, for example?
- is there anything they can give your OH to strengthen his bones
- if there are any mets in the spine and spinal cord compression might be a risk later, ask them to explain the signs of SCC to you so that you always know the danger signs
- any dietary advice (which may depend on the treatment plan)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Apr 2017 at 22:02

Thank you for this. We do know it's in the spine and had 2nd MRI to check how close to spinal chord. Have been given a leaflet on Docetaxel as that is possibly being considered. Had anyone had this with a PSA in the thousands? Has it worked? Is there any other treatments that might be offered? Just feel so lost and would really like to hear what people who have gone through treatment think.

User
Posted 25 Apr 2017 at 22:45

The PSA is rather immaterial now - more important to look at other people diagnosed with similar spread patterns. There are a number of men on here that have had docetaxel and are doing very well - look at Si_ness and irun who have similar spread. ColU_FC has been keeping a blow by blow account of his chemo on here which you may find helpful. Also look up Trevor Boothe who was diagnosed with a PSA of 13000 and is still here some years later.


Make sure you get the information about SCC - too many men end up with limited mobility or even paralysed because no-one warned them what the symptoms were.

Edited by member 26 Apr 2017 at 00:17  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Apr 2017 at 23:17
Lyn

Think you have a typo, I have not had chemo.

Thanks Chris
User
Posted 26 Apr 2017 at 00:15

An aberration! I meant ColU_FC :-/ Amended now - sorry Chris

Edited by member 26 Apr 2017 at 00:17  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Apr 2017 at 20:58
Hi hiitsme,
Firstly I just want to say welcome and yes those stats are pretty scary I am not going to lie to you. So after saying that I am going to give you the flip side here we are 4 years on the 1st May with a starting PSA of 13000 ! Mets in rib, pelvis , spine and lymph nodes . Just about every treatment other than chemo ( Trevor has got heart issues ) so chemo is for us a last resort.
Today he has done the school run and hopefully tomorrow if the weather holds with a lot of persuasion from me he might well be on our ride on mowing the grass. Please always stay strong don't listen to worst case scenarios.
There are so many options these days in treatments , when Trevor was first diagnosed as terminal we never thought for one moment that he would still be here 4 years on but here he is still going strong .
Sending huge hugs.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Apr 2017 at 22:26

Thanks Lynn it would seem like they are looking at Spinal Cord Compression as nurse phoned today to ask about my husband pain levels. He had gone to work as in less pain.Also asked about pins and needles and said latest MRI was being sent to another hospital for a 2nd opinion.

Thanks Julie it is encouraging to read some of your story - I just feel both of you are amazing and do hope it continues.

User
Posted 27 Apr 2017 at 07:23

Hi, I was diagnosed in Feb 17 with extensive bone mets and PSA 1500---at the time I had no idea there was anything seriously wrong with me. I had just come back (end of Jan) from a "boys" golfing break in Spain, and all I was really suffering with was general aches and pains, and a headache, which I put down to old age catching up with me, (64), golf several times a week and general maintenance of a very large garden/plot. However following some excellent and quick initial treatment by the NHS I soon had a prostate biopsy which confirmed PCa followed by x-rays, ultrasound, a CT scan, MRI and a bone scan to identify spread. I started hormone therapy on the same day as I had the biopsy, and other than regular sweats, ( male menopause symptoms), I'm doing ok. I've also just about completed my 1st (of 6), cycle of chemo with my 2nd cycle starting next week, and again so far only one bad afternoon where I felt completely drained and wiped out. Other than that I'm still walking and cycling regularly, although I have been advised not to play golf until chemo ends, which is a pain!!! As an aside I've also completely changed my diet, no red meat or processed food, and very limited dairy products, which has now been replaced by loads of soy products, veggies, fruits, and vegetarian substitutes, plus still eating fish and chicken, and whilst I'm definetly missing my regular bacon/sausage butties I've lost 2 1/2 stone, ( which was needed), and feel much better for it? Just wish I'd done it years ago without the illness prompting it?? Anyway hope this helps and if you need anymore info from this "newbie" then check out my "the road ahead--valleyboy" blog on this site. No one knows what the future holds but I hope everything works out ok for you and yours, all the best J.

User
Posted 28 Apr 2017 at 08:53

Thank you for this. My husband is about a month behind you so we'll see what is suggested next week. I've a lot more reading to do but your story so far is encouraging so far.

User
Posted 04 May 2017 at 13:14

Just an update. Saw Oncologist Tuesday who is suggesting Docetaxel 6 sessions every 21 days. The plan had been for an appointment next week to check and sign for it but his spine may need an operation first. It seems T6 vertebra has collapsed and may need Kyphoplastry for which we have been referred to a different hospital next week. So we now expect to have another appointment with the same Oncologist in 2 weeks time to arrange the timings for Docetaxel. Since then he has now had a CT scan. Also told yesterday his PSA levels are down from over 1000 to 30 - this is less than 2 weeks since the first hormone implant which I assume is good news that it is working.

User
Posted 04 May 2017 at 23:40
Fantastic news hiitsme on the reduction in PSA that is such good news .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jun 2017 at 17:20

It seems that the collapsed vertebra has managed to attach itself to the one below but is stable. It's in contact with the cord but not flattening it so it's being left alone. No pain now.
Before starting Chemo it was suggested any dental work should be done. Dentist has been in contact with Oncologist as some extractions are needed. Chemo put off for a few weeks and bone strengthening for a further couple of months. Does anyone have any idea how long one should wait after tooth extractions before starting bisphosphonetes?
Anyway PSA now down to 7.8 and he is also off all the pain killers he was on so things do seem to be working well. Need to have an X-ray of the femur.
Thanks so much to all those who have posted their journeys in this site. I'm not expecting my husband to start running marathons but encouraged by how much people have been able to do.

User
Posted 29 Jun 2017 at 09:03

Docetaxel started yesterday. So far all seems fine and my husband has gone to work today which is what he wanted. I thought I had read through everything I could find on this but had not come across Filgrastim injections. Has anyone else had them? They are to be given for 5 days starting on day 4 to reduce the risk of blood counts going low.

User
Posted 29 Jun 2017 at 09:27
I can't help with that but just wanted to say I've just read your story after being absent from the forum for a while. What an amazing response to hormone treatment, that's absolutely amazing. I wonder if you have another miracle man, there are a few on this site, including my own. Diagnosed 6.5 years ago with a Gleason score of ten and mets in spine, leg and lymph nodes, PSA 25. PSA now 9 (been up and down but no more than 12 in those years), lots of trials and tribulations, I won't pretend, but it's only now that the cancer has started actually spreading elsewhere in the body, up until now it's been in mets that were already present.

Then there is Trevor Boothe and Si Ness. All supermen. Fingers crossed you've got one too.

Devonmaid
User
Posted 29 Jun 2017 at 12:41

Thank you Devonmaid. for you encouragement. My husband is coping really well both with the diagnosis and the treatment, far better than me. HT seems to be working so well, particularly in that he was able to come off all 4 painkillers he had been needing. We should find out on Friday what he last PSA is which hopefully will still be good. I've read some of your story and feel for you, I do hope that your husband's treatment can be sorted out soon. The waiting is so difficult.

User
Posted 29 Jun 2017 at 21:43

PSA was up to 12 before the Chemo started. The consultant phoned my husband this evening. See what affect the Chemo has.

User
Posted 30 Jun 2017 at 12:23
I think on this basis chemo is an excellent call. Good luck xxx
User
Posted 05 Jul 2017 at 22:38

First few days after Chemo went well and we thought all was fine until Tuesday. My husband phoned me on his way home from work for me to collect him from the station as he was in pain. We had a phone no to ring if he got into pain and temperature was up to 38.4. Told to go straight to A&E, They checked his bloods and said he is "Neutropenia" of 0.3. He's been admitted and although no infection has been found, and temperature has returned to normal they said he needs to stay in until his reading gets over 1. He is quite well in himself and no longer in pain but we have to learn to accept whatever if thrown at us. Hopefully he will come home tomorrow but we had hoped for today. They haven't checked his bloods today! so don't know if there has been any improvement. He's bored which I feel is a good sign. They are also giving him antibiotics by drip just in case.

User
Posted 06 Jul 2017 at 11:18
Oh that sounds scary, but thank goodness he was admitted just in case.. I think this highlights the point about working during chemo as you are very suseptible to infection and public transport in particular is a hive of germs. I hope he is back home very soon.

Love
Devonmaid
User
Posted 06 Jul 2017 at 11:37

See the last post in this thread:


http://community.prostatecanceruk.org/posts/t12982-Going-back-to-work#post160397


I'm not saying I told you so. I am saying you need to consider this very carefully.


At the start of May 2017 I was going to the gym three times a week - 35 mins of aerobic exercise, followed by leg curls and extensions, stomach crunches, lower back extensions, stretching, etc, on every session.


Then I got pneumonia. For the last two months, no gym, because I've been enfeebled by pneumonia. I don't know when things will improve. My quality of life at the start of May was a 10, now it's a 3.


Think very carefully.

Edited by member 06 Jul 2017 at 11:39  | Reason: Not specified

User
Posted 06 Jul 2017 at 20:28

hope this helps


diagnosed 30mths ago with spread to bones, given 3yrs, have had the docetaxel and some RT, am on 3mths HT treatment, last scan has shown all mets have shrunk including prostate, so the years should be extended, its all a bit in a nutshell but you don't need my life story, trust in the treatment and the oncos


also get in contact with McMillan my nurse is great


regards


nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 06 Jul 2017 at 21:13
NIdge makes a good point. Do you have a local hospice? It's not only for the end of days but they are very supportive towards people with incurable illnesses. We have a hospice nurse that helps us much more than our GP and she arranged counselling for me when I have been struggling. There is complementary therapies, reiki etc and day hospice for when people need a break, my hubby enjoyed his stint there as he was able to talk frankly with other people who were ill.

Also has anyone spoken to you about PIP? Please direct message me if you need support with that but you may be entitled to financial support and a blue badge if things get worse.

Kind thoughts for better days ahead. Ps we've been looked after by our hospice for over six years!

Devonmaid
User
Posted 07 Jul 2017 at 10:03

Thank you
He's out of hospital and back to work today! Neutrophil count was 16.2 (a bit up from the danger zone of 0.3!) so hospital now don't think he needs to take any special precautions. No infection was found but given antibiotics just in case. Will have plenty of questions for the Oncologist next time. My husband enjoys his work, although above normal retirement age, and it keeps his mind off other things. We did ask Oncologist about work as he uses public transport and were told OK, I wonder if she will change her mind when we next see her.

User
Posted 19 Jul 2017 at 21:30

We saw a different Oncologist yesterday. Suggested a lower dose Chemo and starting the Filgrastim injections earlier and also having his bloods tested next Tuesday. Chemo went ahead today and all seems OK.

User
Posted 24 Jul 2017 at 10:44
Hi hiitsme
Your journey has been almost a mirror of mine. Was diagnosed Sept 2016 PSA 1000+, Gleeson 9.5. Hormone therapy started straight away, with a PSA down to 130 within six weeks. Started chemo (Docetaxel - 6 session, three weekly) PSA went to 0.15 after two sessions; having had a scare with very low white blood cell count along the way. But developed anal abscess that became a fistula and need surgery to correct (ouch!). After surgery was fully healed chemo was suspended as it was thought that the remaining sessions wouldn't be helpful but I stayed on the hormone therapy.

A blood test in March revealed that my PSA had risen to 11 and it was decided to resume chemo again. As they also wanted to start injections to support metatistised bones I needed to have an abscessed tooth removed; this took three weeks to heal. Having started chemo again I've just had the second cycle to this new regime and my PSA has risen to 31. Obviously this is very disappointing but I'm hoping that all these new interventions will get on top of it but only time will tell. Feeling good at the moment and I'm sure it will come around eventually.

Hope this helps in some way and underlines that it's not a straightforward journey for any of us. Best of luck and best wishes for your on-going journey.

Boyd
User
Posted 27 Jul 2017 at 12:04

Bloods tested Tuesday 25 July (Day 7) WBC 6.2 and Neutrophils 4.3 so told all OK this time round
PSA taken 18 July was 4.9

User
Posted 27 Jul 2017 at 12:12

Hi Mini-thumper
Thanks for the support. My husband is still in the early stages of treatment and so far things seem to be going quite well with a few blips. I do hope that your treatment starts working soon or they can come up with something else that will work. I am finding it all a huge learning curve.

User
Posted 09 Aug 2017 at 20:42

Chemo 3 went ahead as planned today but sticking to the lower dosage as last time. PSA on 25th July was 2.8 so that is really good news. From over 1000 to 2.8 is a great reduction in 6 months.
Also added Zoledromic acid to help with the bones.
No real side effects from Chemo this time so hopeful that will continue.

User
Posted 09 Aug 2017 at 20:47

That's a great reduction :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2017 at 23:38
Fab news on the PSA reduction , Trevor was on Zoladronic for nearly 3 years.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Aug 2017 at 08:43

Spoke too soon. Thursday he arrived home from work shattered and exhausted. He looked awful and as if he had flu. Also in pain and poor appetite. Eventually he agreed to take a couple of paracetamol. As he had a very high temperature he phoned the hotline no. As it was only day 2 of cycle and his neutraphils had been good was just told to monitor temperature and phone back if it didn't come down. Temperature returned to normal but no energy Friday or Saturday. Seems to be improving today but I'm not coping very well. The difference this time was the Zoladromic Acid.

User
Posted 13 Aug 2017 at 14:10
Hi there. I had chemo a couple of years back and was generally fine. They added zolondronic acid recently as I had early osteopenia due to long term steroid use and 3 days later felt awful, flu like symptoms, went away after 3 more days so whilst I don't know, I would guess that it's that which is causing flu symptoms.
Hope that helps
Take care. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

 
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