I have created this new topic to document my case which I believe may be interesting to members .
I was diagnosed shortly after my 55th birthday with a PSA of around 130 and no other symptoms, nothing, nada, everything worked absolutely normally; I had a small prostate with about 40% of it filled with a Gleason 7 tumour. and seemingly not a lot else; nothing in the bones or internal organs that any scan could see
I have subsequently gone through an laparascopic prostatectomy; there are bad bits to these that only those that have shared them can tell you about. The gas pains, in France they give you ketamine for the postoperative pain and it results in hallucinations for a few days, bad constipation for a week and the odd nightmare for months after, the weeks after the catheter removal when you think you will never hold your pee again, etc.
Five weeks after the operation I had a PSA of 2 that fell to zero after a few weeks on Firmagon.
I have had 66 Gy of radiation plus 6 months of Firmagon now and I probably have another two and a half years, maybe less as I am doing so well or maybe the dreaded Luperon.
I am hoping that the residual cancer was concentrated in the urethra, bladder neck, etc which has been given an extra zapping or in the immediate pelvic area that was given a gentle roast, that and the Firmagon will hopefully destroy any little satellites.
I could be dead in more than five to fifteen or more, I was a scientist and then I worked in IT so I am a bit of a dab hand at data but there is really no way to know.
Joined: Nov 2010
Things are OK and can always be better!
Yes it seems that all is OK with you. In any case, better than 122/75 is hard to get. I am close to a median of 131/82 that is also good for a 70 years old. Unfortunately I never cared much in the past about blood pressure and that disregard while on ADT took me to a CKD stage 3. This will never get better.
Hope the good news continues.
Best,
VG
Joined: Sep 2018
Blood pressure
Hi Vasco,
My blood pressure soared quite quickly when I started Firmagon and I was telling various doctors that I was suffering from headaches, etc but none of them thought of measuring my blood pressure.
Eventually I went to see Dr Pooh who measured it and was aghast to find that I was hitting 180/110 plus, straight off she issued me with 150mg irbesartan and when that failed to have much effect I doubled the dose to 300mg on my own initiative and then we added some amlodipine to the mix as well.
Since then it has been in a long decline to the present level now that I have stopped Firmagon.
I would honestly advise any man starting ADT to borrow or buy a tensiometer, they are about EUR 60 for a really good one that allows connection to your computer, charting, etc.
You may not need it, some men have no or only a small rise in blood pressure but some men suffer a real climb like myself and Vasco that may leave you ill or even dead so it is a small price to pay for an insurance policy!
Best wishes,
Georges
Joined: Sep 2018
Legs pains
Hi there,
It is now close to five months after my last shot of Firmagon and the leg pains in the night have finally left me.
I have a lot more stamina as well, I can trot up the stairs without effort.
I still get the odd hot flush so I do not think it has left me entirely yet.
In theory there should be no Firmagon in my system but has the whole FSH, LH, GnRH, testosterone thing restarted is the question?
Best wishes,
Georges
Joined: Nov 2010
Important itens in blood tests for guys on ADT
Georges,
I had a similar experience when diminishing the side effects of ADT. I could feel them vanishing along a period of 4 months. The last one to be accomplished was body hair. It took about 1.5 years to have them back in my arms and legs. The first symptoms were in regaining of energy and loss of artritis like pain. Then it was followed by firmer testicles and libido.
The best you can do is to get those items in the list when having the blood test. I do PSA every 3 months, Testosterone every 8 months and the T3, FT4 and TSH annually. My urologist question on the need for these markers that are usually in women's related case screenings, but he understands its value in CKD patients, which may be a cause from prolonged ADT. Surely I also check the traditional items for kidney and liver screening, etc, twice a year. Vitamin D was tested before starting ADT together with a DEXA scan and now I do it every three years.
I have been waiting for your numbers. I want to see your PSA by the time your T returned to normal levels (>240 ng/dL).
Let's celebrate.
VG
Joined: Sep 2018
Six month anniversary
Hi there,
My six month anniversary since my last shot of Firmagon is coming up at the end of the month.
Almost all the short term effects including the leg pains have disappeared although I still suffer from the odd hot spell.
Obviously balls are still very small to the point of being barely balls at all and my abdominal and chest hair is marked by its absence.
Interestingly the hair on my head is thicker and darker and my beard is as luxuriant as ever.
As you know France is in a two week lock down but I swung past the lab the other day and it is operating but completely deserted.
French doctors like to hand out blood tests to all and sundry at every routine visit as they are paid for by the state, it looks like the doctor is doing something and once in a while it does catch something like my PCa.
But as no one can go to the doctor for the moment unless they are very ill with something apart from coronovirus, this gravy train for the labs has dried up.
So I will be popping in next week for PSA, testosterone, etc.
Wish me luck as you wave me goodbye!,
Georges
Joined: Jan 2013
Six Month Anniversary
I'm glad to read that your side effects from Firmagon are greatly receding. Great news.
Like you, while I was on hormone therapy, I noticed a thickening of my head and facial hair.
I wish you the best of outcomes on your PCa journey.
Joined: Sep 2018
Nervous day
Hi there,
I have a nervous day ahead as I have been for THE blood test this morning.
Results for PSA, glucose and HbAc1 tonight, testosterone at the end of the week.
Best wishes,
Georges
Joined: Sep 2018
Scores on the door
Hi there,
First up
PSA < 0.05 aka under the limit of detection.
Time for a celebration.
Cheers,
Georges
Joined: Mar 2017
Lucky man! Well done!
Lucky man! Well done!
I'm less hopeful about my next one as it was 0.09 :(
EDIT: Sorry - that was grumpy and I have been a lot longer off of HT so my profile is different
Joined: Sep 2018
How low can you go?
Hi Hew,
A constant and low level of PSA is what you are looking for.
Contrary to the received wisdom parroted by some PSA is not exclusively produced in the prostate.
Some men that have had their bladder, prostate and all the associated gubbins hooked out because of bladder cancer continue to record low levels of PSA of the order of 0.1 ng/mL.
If it sticks around the 0.1 ng/mL level, it may bounce around a bit as the assay is not totally reproducible, then you are bonza.
We may be closer to the out door than some but it is still not that close.
The time to worry is when the PSA comes back and there is a PSADT of around a few months.
Then maybe you are looking at the one with your name on.
Best wishes,
Georges
Joined: Mar 2017
Yea. I know.
Yea. I know.
I'm just feeling gloomy as I have just lost my mum and uncle and there are no silver linings at the moment.
Joined: Sep 2018
Silver linings
Hi Hew,
You just have to keep on plugging on.
There is a light at the end of tunnel, hopefully it is not the train coming the other way!
Stay strong,
Georges
Joined: Mar 2017
Yea. I am playing Death
Yea. I am playing Death Stranding at the moment. Sam Bridges has a refrain - "keep on keeping on"
Its bloody hard though with all this loss and the death and chaos around.
Joined: Nov 2010
Remission
Yes. How about a G&T for toasting. The result is super.
The value of T will give you peace of mind.
Congratulations
VG
Joined: Jun 2017
Great news
George's,
Congratulations!
Eric
Joined: Mar 2017
Good news at a bad time
Good news at a bad time
Joined: Sep 2018
Texto
Thanks everybody.
I had a texto yesterday, the results for the blood glucose, HbAc1 and testosterone will be out next week.
Maybe I will go and see Dr Tigger on the 2nd of April and maybe not, I will see what the coronavirus is doing.
Joined: Jan 2013
Great News
Great news, Georges!!!
It is really good to read some great news in these generally bad news times.
I will toast your good news this evening.
Joined: Sep 2018
Testosterone
Hi there,
Obviously they did not have a lot to do because they did my testosterone last night and sent me a copy today.
Back on the 6 December 2018 it was below the limit of detection at < 12 ng/dL, < 41 nmol/dL
Today it is up to 192 ng/L, 666 nmol/dL which is just below the normal range of 193 -740 ng/dL, 670 - 2568 nmol/dL
Historically a level less than 50 ng/dL was viewed as subcastrate but the standard now is less than 20 ng/dL as the lower the amount of testosterone the better the therapeutic outcome.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725306/
So I am heading back towards normality, I think I will go for another test in September.
So the question now is if the testosterone will tickle the PCa back into life or will I have an extended or life long period without it?
Best wishes,
Georges
Joined: Sep 2010
Congratulations amigo!
So nice to hear the good news. I am on tenth week of Lupron with Casodex added three weeks ago but all things considered, feeling great. Tons of short term energy that fizzles after a strong physical workout and no depression or anxiety. Erections are firm with Vitamin V with daily sexual intercourse to keep my girlfriend smiling. Unfortunately no orgasm for me though.
The magic bullet here seems to be walking brisk for several miles every other day and heavy weightlifting with emphasis on core. It does require effort to get going but once warmed up my energy level rises. I am supposed to start proton therapy at MD Anderson in June. I've requested an earlier date so I can get this behind me.
Joined: Sep 2018
Videoconference
Hi All,
Videoconference with Dr Tigger at 9am tomorrow morning.
I have my papers ready!
Best to all,
Georges
Joined: Sep 2018
Videoconference
Hi All,
That's the videoconference over.
I have a prescription for three monthly PSA tests and some vitamin V in the post, hopefully I will see Tigger face to face in September.
This assumes that we are both still alive and the sky has not fallen in!
I will go and see Pooh for a chat when the emergency is over.
Best wishes,
Georges
Joined: Nov 2010
Successful treatment
You have a good reason to be positive. T is well above castration and the PSA maintained the remission levels. This is how we differentiate a successful treatment from the ones no so good.
Joined: Sep 2018
Quiet confidence
Hi Vasco,
I am moving round to a point of point of quiet confidence, if my PSA continues to remain under the limit of detection for a year
with the testosterone flowing round then I think I will able to say confidently that I am in sustained remission.
Obviously the beast can still jump out of the cupboard and get me later on but it will be good.
If you look at the reference below you will see how lucky a bunny I am and may be.
71% of men with a PSA level > 100 had a Gleason Score >8 and 93% of them had grade IV disease, etc, etc.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3285713/pdf/kju-53-82.pdf
Best wishes,
Georges
Joined: Nov 2010
Jumpping out of the cupboard
My lay opinion on your success as commented in above post is based on your informed initial diagnosis, the choice of treatment and the latest results, all reliable data.
I wouldn't say that you are "a lucky bunny", as you comment, but that the treatment was chosen wisely and fit perfectly your PCa risky status. Not all G-rate 4 and seminal vesicle invasion cases manage the success as you did. There exists always the probability for recurrence which is a particular aspect of this PCa issue, independently of the type of Gleason or clinical stage. The medical community never uses the word "cured" after treatment for cancer exactly because the probability in recurrence is never zero.
The link you posted does not identify you differently from what were the results of the biopsy of 2017. The study in the link identifies positive cases via the level of PSA serum providing probabilities of the level in Gleason grades. However, even if the Gleason grade in biopsies is flawed, the bandit will still jump out of the cupboard in guys like me with low G rates of 2 and 3.
I like to know that your "quite confidence" involves being positive.
Continue your good work in helping the many here and join me for a G&T before I get the covid-19.
VGama
Joined: Mar 2017
My next test is APRIL. I'm
My next test is APRIL. I'm not thinking about it.... yet. Let's hope I keep up with George.
Joined: Nov 2010
Hi Cushions
I hope the PSA comes at the levels of your wish. In any case, you know that there are always ways to handle things even if not as satisfactory. I know you are worried and the timing is not the best.
Let's try being positive.
VG
Joined: Sep 2018
PSA poker dice
Hi Hew,
Are we playing PSA poker dice? :-)
Next test for me at the end of June if I have not died of COVID-19 or in a high speed Mini crash first!
You will be fine,
Georges
Joined: Sep 2018
Dr Pooh visit
Hi there,
So off I went to visit Pooh in the time of coronavirus.
We agreed to continue with the cocktail of Irbesartan, Metformin, Amlodipine and Avorstatin that I am taking.
I have another round of blood tests at the end of June for glucose, HbAc1, cholesterol and the dreaded PSA.
My blood glucose in the morning is down to 1,16 g/L now, this is just above the normal range.
I am taking a lot of walks and getting some gardening done as well.
All in all I feel fine.
Here's to the middle of May and a paddle in the sea.
Best wishes,
Georges
Joined: Nov 2010
Nice report
This is an interesting cocktail. I got similar issues regarding high blood pressure and prevention of cardiovascular disease but have no diabetes (still). I hope the medication does work properly. Let7s hope for the good news on the PSA.
Best wishes.
VG
Joined: Sep 2018
Cocktail
Hi Vasco,
I suspect that I could reduce the cocktail but I have ulterior motives in continuing to take it.
Both ARB's like irbesartan and the metformin statin cocktail are suspected of reducing the activity of prostate cancer cells.
So with the unwitting connivance of Pooh I am conducting my own one person trial of off label PCa treatment! :-)
Best wishes,
Georges
Joined: Sep 2018
Feeling fluffy
Hi all,
Seven months since the last shot of Firmagon and things are really getting back to normal.
My physical sexuality is returning and I am getting a bit fluffy round the chest!
I still have some leg pains and the occasional hot spell at night.
Whoopee!,
Georges
Joined: Jun 2017
Hi George’s,
Thank you for updating us, and I am glad that things are returning to normal. I am now ten months post hormone therapy and my testosterone remains low, with the only side effect at this point a kind if lack of vitality. More importantly, as of Feb. 24, my PSA is still undetectable, so I am very grateful.
Eric
Joined: Sep 2018
Bad days
Hi Eric,
I feel pretty OK most of the time but I do have days when I feel lethargic.
One noticable thing is that my cold tolerance has dropped off, I cannot stay outdoors for a long time in cold weather.
Before the diagnosis I was to all intents and purposes a fit and pretty slim 55 year old.
I reckon you need as long as you were on ADT to recover and I doubt it is possible to recover completely from long periods, I will be as normal as I am ever likely to be by Easter next year.
Even if the cancer does not return I feel that the treatment has had permanent effects on my overall health.
Best wishes,
Georges
Joined: Mar 2017
I find persistent fatigue a
I find persistent fatigue a thing but I wonder how much is in my head or due to allergies
Joined: Sep 2018
Complex subject
Hi Hew,
I think it is a complex subject.
First thing is your age and state of health going into the treatment.
I recovered from the surgery quite well but I doubt that if I had been doing a heavy physical job I could have returned to work for a long time if at all.
Next up was the radiation, I was quite lucky with this but without doubt taking 66 Gy to the pelvis is not going to do you any favours.
Last up was the ADT, without doubt there is a balance between doing enough to increase your chance of being cancer free and doing so much that it has a bad effect in itself.
After six months most men do get back to normal quite quickly, 18 months like me is pushing it, three years is just too long to really recover in most cases, but if it gives you a longer life it may be a good idea.
I feel that prostate cancer has diminished the quality of my life and if I do not die of the thing, my life will have been shortened by the treatment I have received.
When is the good news on your PSA in the post?
Best wishes,
Georges
Joined: Mar 2017
Well it's made worse by
Well it's made worse by random sleep apnoea. I e lost a lot of weight but need to lose more. Lockdown comfort eating does not help
Test is in a few weeks. I'm trying not to think about it but deep down it niggles me. Que sera sera.
Joined: Nov 2010
Quality viz-a-viz Quantity
“ I feel that prostate cancer has diminished the quality of my life and if I do not die of the thing, my life will have been shortened by the treatment I have received “
George, you say it well. I think the same as I saw myself deteriorating at each phase of treatment along the years.
I have no doubts that treatments gave me life but the balance between quality viz-a-viz quantity have provided me a better grip on the situation as I aged. I wonder if instead of sequential, a more aggressive treatment at the beginning would have eliminated the bandit for good in my case.
Fatigue has been the longest worst enemy in terms of quality living, since ADT 8 years ago. It has lost some intensity but it prevails. I also can’t blame my age for feeling tired after some physical or my active life style. Though I do not attend a gym I think I am fit for the daily routines and walks. Now I am confronted with the idea that I may have to change my hobby-farm because I can’t look after the orchard or keep the land clean from weeds. Worse still is that we can’t find helpers here in the southern region. I would be very happy to have Cushions here helping me in my orange grove. It would help him in losing weight treating his sleep apnea. Lol
Great post, great comment.
VG
Joined: Sep 2018
Cautious optimism
Hi there,
Another trimester, another round of blood letting.
My blood glucose is slowly declining, I think this is due to recovering testosterone and regular long walks.
PSA remains below the limit of detection, I think if this continues for another six months I will declare myself in remission.
I have circulating testosterone if there is active centres of prostate cancer it should wake them up.
It could return in two, five, ten or more years but something else could get me.
I will see Tigger in September.
The level of coronavirus here now maybe very low, we have a few official new cases a week but maybe that is the tip of the iceberg, there are an unknown number of cases that are asymtomatic or only sniffles so the person recovers without testing. Without testing a sample of several thousand spread across Finistére it is hard to get a handle on what is happening so people make their own decisions on the basis of very little in the way of facts.
Best wishes,
Georges
Joined: Nov 2010
Keeping peace of mind
Hope things go well and that the meeting of September gives you peace of mind. Good to know that covid-19 is running out of steam in your area. Not here in the Algarve. The positive confirmed cases are increasing and there are no proper facilities to handle covid patients. Albufeira was declared as an area for the covid focus. Planes arrive by the thousands. We will have the vast majority of mutated sars-cov2 of Europe in just one place. Maybe the virus speaks various languages too.
I will try to keep safe. You do too.
Best.
VG
Joined: Sep 2018
September 2020
Hi all,
Another PSA result less than the limit of detection.
I will get all the rest of the results over the next few days so plenty of time to find out if I am dying of something else! :-)
Best wishes,
Georges
Joined: Mar 2017
Ptschhh!!!
Ptschhh!!!
That was the sound of the can of beer opening to celebrate.
H
Joined: Sep 2018
Thanks
Hi Hew,
I took the Mini for a celebratory spin on my own!
I have the rest of the lab results now with the exception of testosterone, the latter is definitely in the normal range now, and everything is normal.
Given my initial PSA results and treatment, etc, I am healthier than I have a right to be.
Sadly it is going to be a long cold winter with COVID-19, keep safe everybody!
Best wishes,
Georges
Joined: Nov 2010
Restfulness
I am glad to know about your remission. Hopefully it will keep that way for ever.
Covid is on the increase again. Let's be careful with whom we celebrate.
Best.
VG
Joined: Sep 2018
Happy birthday to me
Hi everybody,
So here I am on my 58th birthday which is three years and a smidge from my diagnosis.
My PSA is below the limit of detection and my testosterone is back in the normal range at 230 ng/L, 798 nmol/L.
Blood pressure, blood sugar and electrolytes, etc are normal.
I went to see Dr Tigger this morning and I have PSA tests in March and September next year and I will see him next October.
All we can do now is wait and see, if the PSA stays where it is I am in remission, if it pops out of the woodwork I am not.
Drinkies tonight!
Best wishes,
Georges
Joined: Jun 2017
Happy Birthday!
Enjoy the day and continued good news!
Eric
Joined: Mar 2017
👍👍👍👍Well done !!!!
👍👍👍👍Well done !!!!
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