I am glad I found this site which I think is great and a must for us with prostate cancer and I hope my story will help someone.
I had a PSA test due to a change in frequency of urination. The result was 30 and so I had a hospital appointment with a urologist and a physical rectal exam which and he said there was a hard area on my prostate. A further appointment was made for a biopsy. At this point I had no other symptoms and my frequent urination had returned to normal for me. Up once a night and going every 3 hours during day.
I have tried to keep fit, have a healthy diet and never been I'll that I can remember. I tend to deal with any minor health problems I ever had by using natural methods and sorting myself out. I think Ignoring the cancer diagnosis and going my own way was also at the back of my mind. I read as much as possible on the subject both medical and non medical and am still reading. That was how I found this site in the first place. Anyway on with the current situation.
This is where things get complicated as I am full-time carer for my wife who has Alzheimer's disease. She is physically fit but her mind has shut down and relies on me for everything from going for walks to making a cup of tea and some personal care. There are only us two and if I was ever incapacitated she couldn't even make me a cup of tea. Twice I declined biopsy and eventually was offered scans. I had a full body scan which showed areas of interest around the prostate and pelvis area and then the MRI which showed the cancer had escaped the prostate and there were areas in the pelvic area. I was still fit and well and no symptoms.
It was decided after discussion with oncologist and my urologist that I would start ADT bearing in mind my home circumstances. So in September I started on Cyprostat tablets for 28 days and then after the first 7 days had my injection of Triptorelin which was painless. The treatment had begun. I will follow up with my experiences and side effects of the treatment and what other things I am doing to hopefully help myselfshortly. I didn't want to make this first post too long so bear with me. Thanks everyone.
I have now been on the ADT for about 6 weeks now and I suppose have had an easy introduction to the treatment. Though there are side effects none are drastic or interference with my everyday life. Before starting treatment I felt fine and never felt better. The first thing I noticed on treatment was that my urination pattern changed from every 3 hours plus and once a night to every 2 hours and sometimes less and having to get up 2 or 3 times a night. My doctor thought maybe it was the cyprostat and once that course finished I would improve. Wrong, still 2 hours sometimes a bit longer and twice at night. She also said that normally urination improved with treatment as did a specialist nurse I spoke to. So having an enquiring mindci bam trying to put 2 and 2 to make 5. Still looking for answers.
Other more common side effects are mild. I get some short spells of !ight sweating, usually after breakfast and sometimes during a meal but no BSD feelings or problems. Loss of libido is progressing but not a problem.
The only other thing I am getting which may be more worrying is some cardiovascular irregularities. I am reasonably fit for my age. Have had a hiustoiry of distance running and still jog 1/2 hour twice a week and have a fast walk daily which includes a little jog uphill. I do a session of stretching yoga type exercises daily and since being diagnosed have added.
Before the treatment and over the last few years my BP has been on average about 124 over 68 and pulse of 60. Now the systolic BP is variable in the morning and often in high 30's once in 40's and once 151! I also get slightly dizzy after sitting a little while and then standing and moving off. Also when running up stairs. I could do that easily before the treatment so it is a side effect. I have no problem during my jogging for fast walking.
Anyway I am speaking to my cancer doctor about that and have an appointment with my GP this week. As I have felkt so good before starting treatment this sort of side effect is more troublesome to mne than the cancer. I have been quite relaxed about that and it hasn't worried me. Mind you I don't get much time to worry with my carer's work which is full time.
One final thing here. I have nothing but praise for the friendly and caring doctors and nurses etc. I can contact them any time and they are great.
I will keep up to date withany further news on my CV side effects and anything else.
Further to my last update side effects are the same but generally I am feeling fairly well on the treatment. The main concern if I can call it that is the CV side effects which make my blood pressure all over the place. I can have a systolic BP of 150+ when I get up and half hour later it is low at 109. When low I can get a dizzy moment when I get up and my pulse which is normally about 60 can be 70 - 80. Most mornings it is not in the fifties but the high 30's. Until my treatment started I had roughly the same BP readings over the years. Low 120's over 70 and pulse around 60.
Anyway I saw my GP last Thursday and he checked things over took BP etc and said the problem may improve with time as my body adjusted to the ADT. He checked my records and I had no blood test results for things that may be affected by ADT. Cholesterol, lipids, etc. So if the treatment affected my systems there were no starting points to measure any changes from.
So blood tests done for cholesterol, triglycerides, blood sugar, lipids, kidney and liver, thyroid, bone density. I am not sure if that was the lot and then to see how treatment was going my PSA was also done.
That was the good news. The results were through today and all tests were good and my PSA is down to 1.2!! I also spoke to my cancer doctor today who was also pleased with results so soon after treatment began about 8 weeks ago. As for the BP problem she suggested I perhaps get my BP monitored at my surgery and keep up with my exercise routines, even when you don't feel like it, which I think help with both side effects and treatment.
I see my cancer doctor next month and have vmy next jab mid December and will keep you up to date with any news. I hope this helps and encourages anyone in a similar position to me and feel free to email me any time. Good luck.
This is Laurence with the lastest news on my ADT and thoughts. First a good new year I hope to all those with prostate cancer. I had my second injection of tripterolin on 17 December 2015 and saw my cancer specialist nurse on 21 Decemebr 2015. I had had a blood tests in November and my PSA had dropped from 35 to 1.2 in about 7 weeks after starting treatment and the latest on 17 December was a further drop to .7 which seems to please everyone. I am one of the lucky ones who is getting few side effects and can carry on more or less as normal. Though I still have more frequent urination than before I started the treatment.
I am now seeing my cancer specialist nurse every three months and it seems I am now left to just carry on and wait for something to happen to change things. I am not sure I am very happy with that and am going to see if I can get to see the oncologist with my ever longer list of questions. Though first I will speak to my cancer specialist nurse who is very caring and supportive but I am not sure how much she can answer about the technicalities of the way ahead. Things like how long before the treatment stops working, hormone insensitive cells and so on. I know that some men go for years on this treatment but I am not the type to sit doing nothing and just wait to see if and when the advanced cancer gets more serious. I also have my role as carer to my wife who is in late stage of alzeimers disease to think about. Looking after her and keeping myself fit with exercise and diet doesn't give me any time to worry about the cancer too much but I still want answers.
If any of you out there have any experience of what lays ahead while on ADT feel free to email and I will reply to all emails.
I also have my
My name is Laurence and this is my latest update though NJ ot a clot of change at the moment. My last round of blood tests in January were good and PSA down a little more from .7 to .5 so still progressing.
I am still caring full time for my wife who you may remember from previous posts has dementia. This is getting worse although physically she is about the same her mind has deteriorated. I manage to fit in some exercise at home and grab 30 mins first thing for a fast walk and also go for a run twice a week. This seems to keep me going and fit to cope with being on the go from when we get up until going to bed. No time to worry about prostate cancer.
Things may change soon though as I saw one of my oncology team last Friday and have chemotherapy to consider. They are happy with my progress and my fitness. I have some cancer outside the prostate, one part on breast bone, another on the lumbar area of spine and some signs in pelvic area next to hip. None have symptoms or bother me so I don't know they are there.
I have been on ADT for six months now and am being offered chemotherapy as a result of new trials that seem to show that introducing chemotherapy early in the ADT treatment gives a longer lifespan. As you probably know chemo was normally given when hormone therapy had failed and by then there wasn't much hope.
As with all these things, trying to work out what is best is complicated since we are all different. Treatment would be with docetaxel (taxotere). At the moment I have no real side effects that affect quality of life. Although the ADT could become ineffective in another 12 months or so it could work for longer. Five years or more. Then if ADT lasts that long is that longer than the projection in the trials results which are probably based on average figures. I am 71 this year and if ADT works for me for 5 years or more as it is now should I change things. Chemotherapy has its own side effects although again that is different from person to person.
I am still loath to do more than I need with conventional medicine as I try to follow an anti cancer diet including veg juicing daily, and the quark with flax seed oil, but nothing extreme there.
Any experiences with docetaxel would be gratefully received. I am not looking for an answer as I make my own decisions but your stories are always welcome and helpful and give the other side from the medical view.
It is some months since my last update and not a lot has changed. I am now on my 6th 3 monthly injection with triptorelin and my PSA; remains around .5 to .7 and side effects are manageable up to now. The constipation that has crept in over the last few months is now getting worse. I know what I should do to help but to no avail and have to resort to laxatives. I am blaming the hormone therapy. Has it affected muscle action or the amount of fluid getting into the system? I am not happy about it . Has anyone else found this side effect.
I am seeing my GP on Friday 23rd December about blood tests and will quiz him further. I am also asking about getting dihydrotestosterone tested in my next blood test. I understand it can have some bearing on the cancer severity.
I am trying to manage my advanced prostate cancer myself as I seem to have been left to it here in Scotland. I am being overseen by a cancer specialist nurse who I see every three months and this may be stretched to six months in the near future. she is very caring and all that but I just get referred to the GP for any medical matters. Then I don't see the same GP so I tend not to bother. I have only seen an oncologist once when I asked to see one. I have just asked the specialist nurse to arrange another meeting with the oncologist. She has stalled me and said we can discuss that and what I want to know at our next meeting.
I generally feel I am left to my own devices. I have to plan my own injection get the prescription, make my appointment and take it to the surgery and give it to the nurse who then injects. i wonder what would halpen if i forget to do this. Is anyone watching my records etc. is it flagged at all. I think I am left to carry on until the hormone therapy stops working and that's it. What are others experiences? Do you get better service? Is this the norm or do other areas have different procedures. I would be interested to know.
That is where I am at at the moment and once again thanks to all at YANANOW for your own experiences.
It is quite a long time since my last update but during the last 2-1/2 years not much has changed that was newsworthy. I had my regular 3 monthly injections of Triptorelin and see my prostate cancer nurse around the same time. I also have full blood test at the same interval. My PSA has stayed just under the 1 varying around .7 or .9. Though the last 2 have risen slightly to 1.2.
My side effects have been generally manageable. As well as the lowered libido and hot flushes I get fatigued which catches up with me in the evening. I had increase in my frequent urination after starting the hormone treatment but though a couple of treatments were tried they didn't work. Again I manage and it doesn't really interfere with my lifestyle. It is just inconvenient.
During all this time I only get to see the nurse. Since being diagnosed I have not seen a consultant or doctor but am assured my case is regularly reviewed. A few months ago, after nearly 2 years, I wanted to discuss my original bone scan with someone and have a second scan. My original scan had shown spread to the bone including hip, sternum, lower spine. Some were only suspicion of tumour and i wanted to get that clarified. I had learnt that if it was a tumour it should have shrunk with treatment but if it was something else such as arthritis it would still be there. Being the type of person I am I wanted to know. Anyway there was strong resistance to my request as while 'nothing was wrong' as shown by my PSA etc it wasn't protocol. Others agreed with my view including my GP and MacMillan nurses. The GP even wrote supporting my request. Still nothing then suddenly I had an appointment for the bone scan in August at about 10 days notice. Well I got good news!! There is no longer signs of spread on the latest scan. Finding that out has made me more accepting of the treatment. How often do others get to see a consultant or is it like here that you don't see one until your cancer returns.
I have only had hormone treatment from day one due to the high PSA at diagnosis and think myself perhaps fortunate I haven't had to go through what a lot of men have to put up with. Though I work hard at keeping healthy. I try to eat as healthily as I can and exercise going to the gym 5 days a week plus walking and the occasional run. It is hard work and time consuming but I am lucky enough to have the time.
Now looking ahead I am thinking of the longer term effects of ADT including cognitive problems. If you have seen my earlier posts you will have read that I was also carer for my wife who had Alzheimer's disease. Then I get my cancer diagnosis. I have been carer until last April when due to continuing deterioration she had to go into a care home. Not ideal but it is a specialist unit and the staff are great. I go in most days and am part of the unit almost. I stay for lunch sometimes and my wife is look after and cared for.
Anyway back to cognitive problems. After nearly 5 years of seeing my wife's slow decline and the symptoms I can see small signs in my actions. Just now and again and of course I could say it is just old age. Forgetting things putting things in the wrong place etc. But one little thing made me think. I had a can of beans to open so went to the drawer to get the can opener. I put it on the tin and realised that I was about try to open the can with a cork screw. Funny I know, and I put the cork screw away and got the can opener. Old age again but being on ADT made me think. My wife did some things like that but after a while the next stage came where she would do something wrong but not know how to correct herself and so leave it and walk away.
I don't worry about it just as I have never worried about cancer really. I am not the worrying kind and just get on with things and life. Though my final thought is that I will seriously consider stopping my cancer treatment if I thought I was getting dementia. After 5 years seeing my wife go down hill and others in the care home, I would rather face the cancer.
Well that's my update and thoughts for today and a bit long winded perhaps. Feel free to email me on anything I raised.
Laurence's e-mail address is: laurencerstaff AT gmail.com (replace "AT" with "@")