Hi, I am sorry that you find yourself here.
I don't know all the answers but I can share my situation that may help. Age 49 I was diagnosed 21 months ago, Gleason 9, T4 n1 m1a, my spread is to lymphs rather than bones but from what I have read it matters not as it has spread.
I was advised to have early chemo ( docetaxl) followed by radiotherapy as there is some evidence that zapping the " mother ship" may help even after spread.
I was started on biclutamide and zoladex straight away. My PSA went from 342 to 0.5 after treatment. I have never really asked about testosterone levels.
Chemo was ok ( the thoughts were worse than the drug). Yes I got usual symptoms, lost hair, taste buds went, numb feet, nails cracked, dried blood in nose every morning but I did not feel sick as long as I took anti sick pills for 6 days after each session. I was more tired but that is all relative as I managed to run 2 marathons on weeks 13 and 15 of chemo in 4 and a half hours roughly, an hour slower than pre cancer but I still could do them with no ill effect. Everything has come back post chemo although I still get numb feet.
After the chemo and radiotherapy had ended ( June 2015) I then ran a 100 kilometre race. I did get a bit sad about my situation at that point but that's all. My PSA started rising again in November 2015 so I came off biclutamide and in Jan this year started abiriterone. PSA is now at record low 0.3, I generally feel fine, I ran a crazy 7 day 156 mile race in the Sahara in April and did the same 100 kilometre race as last year only over an hour faster this time. In case you are wondering, I am not a mega fit runner and I only started running about 5 years ago having stopped before when I was in my 20s, I just plod round.
So the point of my note is that 1) your onco seems to make sense 2) don't dispair, it's not the end of doing things 3) when one thing stops working they have more up their sleeve to help. My biggest advice is attitude. If you both allow (hard as it is sometimes not to) dark thoughts to be the master then it will be rubbish, not because of the treatment but because of attitude. Every day I plan what I will do the next and then get up and do it no matter how I feel mentally, I then find I feel fine and have a great day. My wife is supportive and we just take one day at a time. My kids are 18,16 and 11 and they just get in with it too.
I have also changed my diet, you can read so much that will tie you in knots but on balance I am most days a fish eating vegan but when I go out I eat what ever I like! I think it's generally good for me and I doubt if a couple of meals including meat and dairy a week are going to kill me! I certainly feel better than ever.
My onco also suggested I take vitamin D and a baby asprin every day as again there is some evidence re asprin and we all need more vitamin D apart from in the summer.
Hope that helps but do keep on posting however you feel as I have found this site very comforting at times as there are so many good news situations when initially it was thought all was lost.
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 |
User
Hello Charlie
Just to welcome you to the site really as I don't have the experience you need.
One of the things I have picked up on this site though, is that those undergoing chemo might benefit from taking Frozen pineapple sticks with them for sucking on as it helps retain the taste buds (I think).
There will be much more help forthcoming from those who, like Kev, have travelled your road.
All is not lost. We have members on here with PSA started in the hundreds and thousands who are still with us because of drugs and treatments now available and these drugs and treatments are evolving all the time.
I can understand your distress but please do not lose heart and despair.
None of us lives forever. A diagnosis of cancer brings that home to us and we have to start re-evaluating our lives.
The way Kev and the other men on here deal with this stage of cancer is truly amazing, and I have no doubt that your husband, with yours and your family's support will be just like them.
Best Wishes
Sandra
Edited by member 15 Aug 2016 at 08:20
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Charlie and welcome , you have definitely done the right thing by posting on this site as I know from my own experience as you remind me very much of myself three months ago! We as a family were just like you devastated and terrified by OH shock diagnosis.
Just to reassure you things do get better and the pc doesn't consume your every waking hour as I'm sure it does now. Your husbands treatment plan seems much the same as my husbands. He is having the three monthly zoladex injections and has just started chemo, he has just had his second cycle and it's not been too bad just the fatigue and hair loss., thankfully he's got a lot to go at. He has changed his diet. So it's mainly non diary and lots of soya, fruit, veg , Brazil nuts and fish. I bought the prostate cancer cook book from Amazon which has some great recipes in it, it might not be doing anything in the way of helping to control the mets but it makes me feel useful!
Anyway try not to panic too much(says she) and just talk to each other as much as you can. I told my OH this as I knew he would try and protect me as much as he could but it really doesn't help.
You sound like you are a very close family, as we are so I'm sure they will support you both on this life changing journey.
You will get lots of lovely people in this site who can give you lots advice, so take care.
Debbie x
User
HI Charlie,
A welcome from me to the site and have to say you will find a lot of advice and experience on the site. I totally understand your concerns and worries at the moment and how you would constantly be thinking all thing pca.
I was dx last year with PSA 294 with mets in bones. Started HT and then early chemo finishing in feb this year. PSA now down to 2.8 and no more treatment except HT, and getting on with life as normal as I can.
Had 6 rounds chemo and would say that it was easier than I had feared, but that was me. SE over the 18 weeks was minimal with some tiredness and lose of hair (but no on head) and that was it. No sickness, numbness loss of taste etc. The Chemo team will take you all through it when time comes and have to say I found them all amazing and made the treatment so easy and relaxing.
I would say most of my problems are head issues and it does make you reflect on your life and choices and thinking about the future. However my OH was brilliant and we talked long and hard about it and then some days didn't even need to think about it. However communication is important between you and OH and your family. The elephant in the room needs discussed as even when its not discussed someone in the family is thinking about it. I never liked talking about anything medical but after dx I found I could talk about my concerns and treatment. The people I knew where sometimes hesitant to ask and always found it was easier for me to bring it up and tell them. Also I consider myself to be around for a long time and sure your OH will be as well.
Good luck on the treatment ahead.
Steven
User
Hello Charlie,
I just wanted to send a quick message to say you're not alone.
Your story sounds so similar to my family's story. My Dad was diagnosed 2 months ago with prostate cancer And extensive bone spread, he has since had emergency Radiotherapy to the spine and started hormone therapy (Zoladex).
He had his first chemotherapy (Doxetacel) yesterday and will have 5 more sessions over 18 weeks.
We are all coping as best we can (I'm one of 3 children) and my Dad is plodding alone, he is a quiet man by nature but I can tell this has knocked him for six. He would never let us know that though.
It is hard to look beyond the chemotherapy at the moment because I just want that over with before we think any further ahead bit you sound like you have a great family who can support both your husband and yourself.
Good luck with the journey.
G x
User
Hi Charlie,
Although I am a fairly long time member I have been very busy of late to reply or post for others but your post touched something to make me want to add a few words of comfort. So here we go my oh Trevor Boothe was diagnosed just over 3 years ago in fact three years ago last May with a PSA of 13000 extensive bone mets throughout his whole torso and lymph node involvement so a pretty dire diagnosis , we have had just about the whole gamut of treatments , Zoladex, bicalutamide, Zometa , Abbiraterone, he has not had chemo because he has other health isues with heart problems. So ok you are thinking that isn't any comfort but here we are over 3 years on and still here , he is still walking, driving and more importantly still fighting . 3 years ago we were terrified feeling all of the the emotions that you are going through today . Life with PCA is a very strange journey there are so many treatments out there that can extend every mans journey and every man reacts differently . There are men on here that are onto there 10th year . When Trevor was first diagnosed we were told to have hope , I laughed in the face of hope but I promise you it is true , look up Devon Maid, Yorkhull, Si Ness and these are just a few there is loads of guys here who are kicking PCa in the face . Dave Kirkhams 10 years on there is loads of inspiration .
Keep strong and keep hoping.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Ruth
Don't despair or worry too much, as Julie says, there are several of us over 10 years now, I'm one of them, but I'm on a pause stage of intermittent HT.
Chris.
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User
Hi, I am sorry that you find yourself here.
I don't know all the answers but I can share my situation that may help. Age 49 I was diagnosed 21 months ago, Gleason 9, T4 n1 m1a, my spread is to lymphs rather than bones but from what I have read it matters not as it has spread.
I was advised to have early chemo ( docetaxl) followed by radiotherapy as there is some evidence that zapping the " mother ship" may help even after spread.
I was started on biclutamide and zoladex straight away. My PSA went from 342 to 0.5 after treatment. I have never really asked about testosterone levels.
Chemo was ok ( the thoughts were worse than the drug). Yes I got usual symptoms, lost hair, taste buds went, numb feet, nails cracked, dried blood in nose every morning but I did not feel sick as long as I took anti sick pills for 6 days after each session. I was more tired but that is all relative as I managed to run 2 marathons on weeks 13 and 15 of chemo in 4 and a half hours roughly, an hour slower than pre cancer but I still could do them with no ill effect. Everything has come back post chemo although I still get numb feet.
After the chemo and radiotherapy had ended ( June 2015) I then ran a 100 kilometre race. I did get a bit sad about my situation at that point but that's all. My PSA started rising again in November 2015 so I came off biclutamide and in Jan this year started abiriterone. PSA is now at record low 0.3, I generally feel fine, I ran a crazy 7 day 156 mile race in the Sahara in April and did the same 100 kilometre race as last year only over an hour faster this time. In case you are wondering, I am not a mega fit runner and I only started running about 5 years ago having stopped before when I was in my 20s, I just plod round.
So the point of my note is that 1) your onco seems to make sense 2) don't dispair, it's not the end of doing things 3) when one thing stops working they have more up their sleeve to help. My biggest advice is attitude. If you both allow (hard as it is sometimes not to) dark thoughts to be the master then it will be rubbish, not because of the treatment but because of attitude. Every day I plan what I will do the next and then get up and do it no matter how I feel mentally, I then find I feel fine and have a great day. My wife is supportive and we just take one day at a time. My kids are 18,16 and 11 and they just get in with it too.
I have also changed my diet, you can read so much that will tie you in knots but on balance I am most days a fish eating vegan but when I go out I eat what ever I like! I think it's generally good for me and I doubt if a couple of meals including meat and dairy a week are going to kill me! I certainly feel better than ever.
My onco also suggested I take vitamin D and a baby asprin every day as again there is some evidence re asprin and we all need more vitamin D apart from in the summer.
Hope that helps but do keep on posting however you feel as I have found this site very comforting at times as there are so many good news situations when initially it was thought all was lost.
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 |
User
Hello Charlie
Just to welcome you to the site really as I don't have the experience you need.
One of the things I have picked up on this site though, is that those undergoing chemo might benefit from taking Frozen pineapple sticks with them for sucking on as it helps retain the taste buds (I think).
There will be much more help forthcoming from those who, like Kev, have travelled your road.
All is not lost. We have members on here with PSA started in the hundreds and thousands who are still with us because of drugs and treatments now available and these drugs and treatments are evolving all the time.
I can understand your distress but please do not lose heart and despair.
None of us lives forever. A diagnosis of cancer brings that home to us and we have to start re-evaluating our lives.
The way Kev and the other men on here deal with this stage of cancer is truly amazing, and I have no doubt that your husband, with yours and your family's support will be just like them.
Best Wishes
Sandra
Edited by member 15 Aug 2016 at 08:20
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Charlie and welcome , you have definitely done the right thing by posting on this site as I know from my own experience as you remind me very much of myself three months ago! We as a family were just like you devastated and terrified by OH shock diagnosis.
Just to reassure you things do get better and the pc doesn't consume your every waking hour as I'm sure it does now. Your husbands treatment plan seems much the same as my husbands. He is having the three monthly zoladex injections and has just started chemo, he has just had his second cycle and it's not been too bad just the fatigue and hair loss., thankfully he's got a lot to go at. He has changed his diet. So it's mainly non diary and lots of soya, fruit, veg , Brazil nuts and fish. I bought the prostate cancer cook book from Amazon which has some great recipes in it, it might not be doing anything in the way of helping to control the mets but it makes me feel useful!
Anyway try not to panic too much(says she) and just talk to each other as much as you can. I told my OH this as I knew he would try and protect me as much as he could but it really doesn't help.
You sound like you are a very close family, as we are so I'm sure they will support you both on this life changing journey.
You will get lots of lovely people in this site who can give you lots advice, so take care.
Debbie x
User
HI Charlie,
A welcome from me to the site and have to say you will find a lot of advice and experience on the site. I totally understand your concerns and worries at the moment and how you would constantly be thinking all thing pca.
I was dx last year with PSA 294 with mets in bones. Started HT and then early chemo finishing in feb this year. PSA now down to 2.8 and no more treatment except HT, and getting on with life as normal as I can.
Had 6 rounds chemo and would say that it was easier than I had feared, but that was me. SE over the 18 weeks was minimal with some tiredness and lose of hair (but no on head) and that was it. No sickness, numbness loss of taste etc. The Chemo team will take you all through it when time comes and have to say I found them all amazing and made the treatment so easy and relaxing.
I would say most of my problems are head issues and it does make you reflect on your life and choices and thinking about the future. However my OH was brilliant and we talked long and hard about it and then some days didn't even need to think about it. However communication is important between you and OH and your family. The elephant in the room needs discussed as even when its not discussed someone in the family is thinking about it. I never liked talking about anything medical but after dx I found I could talk about my concerns and treatment. The people I knew where sometimes hesitant to ask and always found it was easier for me to bring it up and tell them. Also I consider myself to be around for a long time and sure your OH will be as well.
Good luck on the treatment ahead.
Steven
User
Hello Charlie,
I just wanted to send a quick message to say you're not alone.
Your story sounds so similar to my family's story. My Dad was diagnosed 2 months ago with prostate cancer And extensive bone spread, he has since had emergency Radiotherapy to the spine and started hormone therapy (Zoladex).
He had his first chemotherapy (Doxetacel) yesterday and will have 5 more sessions over 18 weeks.
We are all coping as best we can (I'm one of 3 children) and my Dad is plodding alone, he is a quiet man by nature but I can tell this has knocked him for six. He would never let us know that though.
It is hard to look beyond the chemotherapy at the moment because I just want that over with before we think any further ahead bit you sound like you have a great family who can support both your husband and yourself.
Good luck with the journey.
G x
User
Thank you for your replies. They are much appreciated.
We have just returned from a weeks holiday in Cornwall. Decided it was better not to go abroad with all the uncertainty hanging over us at the moment, but I'm sure as everything becomes clearer to us and after the chemo has finished, we will be off. Cornwall was lovely though and 2 of the days were really hot. We did loads of walking and exploring and boat trips. Some lovely meals out. Packed in as much as we could and we did enjoy ourselves. Every now and again though I caught myself thinking how carefree and happy we would be feeling if only this huge thing was not lurking in the background. I've always said to OH that nothing matters except health - both mentally and physically and not to fret about work, money etc (although we both did!)
I find myself gravitating to this site more and more to read how other people are coping with their situations. Although this is only my 2nd post it's a great help to read how others are so inspirational and supportive, and some of the humour has really made me chuckle. You people are really amazing. I know I will be posting on here for advice and help and reassurance (maybe I will be able to do the same myself eventually) Talking to OH is good when he is in the mood to discuss it, but he's not always in that frame of mind. I can see the despair and sadness behind his eyes though, and I know it's always with him. He's so afraid but very brave and I want so much to help and sometimes feel so helpless. I know it's small steps though so we've already started with the diet. I've also got him taking Pomi-t and 100% cranberry juice (which he is trying to enjoy diluted) My son has bought him a book called 'coping with chemo' and 2 thermometers! I would like to think I would be aware of any infection/sepsis signs as I work for the NHS.
Anyway, just want to let you know I am so glad to have found this site and thank you for your welcomes. I will be posting under some of the other topics from now on
Ruth
User
Hi Charlie,
Although I am a fairly long time member I have been very busy of late to reply or post for others but your post touched something to make me want to add a few words of comfort. So here we go my oh Trevor Boothe was diagnosed just over 3 years ago in fact three years ago last May with a PSA of 13000 extensive bone mets throughout his whole torso and lymph node involvement so a pretty dire diagnosis , we have had just about the whole gamut of treatments , Zoladex, bicalutamide, Zometa , Abbiraterone, he has not had chemo because he has other health isues with heart problems. So ok you are thinking that isn't any comfort but here we are over 3 years on and still here , he is still walking, driving and more importantly still fighting . 3 years ago we were terrified feeling all of the the emotions that you are going through today . Life with PCA is a very strange journey there are so many treatments out there that can extend every mans journey and every man reacts differently . There are men on here that are onto there 10th year . When Trevor was first diagnosed we were told to have hope , I laughed in the face of hope but I promise you it is true , look up Devon Maid, Yorkhull, Si Ness and these are just a few there is loads of guys here who are kicking PCa in the face . Dave Kirkhams 10 years on there is loads of inspiration .
Keep strong and keep hoping.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Ruth
Don't despair or worry too much, as Julie says, there are several of us over 10 years now, I'm one of them, but I'm on a pause stage of intermittent HT.
Chris.