"The road ahead"!

Hi Valleyboy,

Sorry i can't help with your questions but hope i can give you my support and best wishes with your treatment, chin up mate and keep fighting.

John.

Thanks for the support John, as up till now I've been really positive about this journey and just got caught out a bit by today's rise in PSA news???
Also thanks once again Lyn,--- very reassuring and as always a wealth of knowledge on all PSA issues, which I ll mention to my chemo team during my 4 th infusion tmos.

Thanks hiitsme hope all goes well in two weeks and as you can see from my journey to date it hasn't been so bad has it?

Chemo/4 day one update----triple whammy day started with 12 dissolveable steroids tabs!! Followed by HT injection at 09.00 Then up to hospital for chemo/4 infusion 10-30--14-00. Discussed my 20 point rise in PSA with my onco and she isn't too concerned at the moment as she stated that as I started with such a high number fluctuations can occur, however she ll review it again before my next infusion in 3 weeks time, and depending on which way it goes will action accordingly. Also been told not to undertake any vigorous exercise!!! For 48 hours prior to my next test thus giving a more accurate reading. At the moment (23-50), all going well with no undue reactions. In fact I'm now lying in bed watching the US Open golf because as usual today's steroid intake means im wide awake?? Again as usual unless something dramatic crops up Over the next few days I ll update weekly during this 4th chemo cycle. all the best comrades----J.

Chemo/4--week 2 update--couple of new symptoms which I haven't had before--chesty cough ( for which I've been taking standard over the counter cough medicine), and a shortness of breath when walking up stairs etc--has anyone out there had experience of this and how long did it last? I've had it approx 5 days. Phoned my chemo Unit yesterday for advice and they went through a telephone check list---daily temps ok--no loss of taste or appetite--no constipation/dioreha--no pins and needles so no need to go in to hospital, but to phone again if anything changes---all replies gratefully received--Thanks J.

Hi Valleyboy,

Once again a reply to your post has been zapped by the system. I have been assured that this does not happen but IT DOES. Either someone is censoring posts or the system has a fault. So this is a repeat entry!

Anyway, to my point, breathlessness is a well known side effect of docetaxel use for both men and women. I had it in the fourth cycle and it is worse in the fifth. No other problems. I checked my peak flow and that is fine too. I shall discuss it with my oncologist next week and hope that in subsequent cycles it does not become disabling. For someone who is as fit as a fiddle, it isn't much fun to be puffing and blowing when returning from buying the paper in the morning, perhaps a mile and a half, 25 mins, down and then uphill. You have my sympathies, but I reckon you may have to grin (or scowl) and bear it like me!

AC

Valleyboy, my oncologist's reaction to my evidence of lethargy and breathlessness today was to reduce remaining doses (cycles 6-10) by 20%. Hopeful!y, I shall get some relief from this!

AC

Ok went for chemo/5 infusion today and PSA up 37 pts to 217, (originally 1547 in Feb/17). So that's a 57pt rise in 2 months so my oncologist said if it goes up again in 3 weeks then I will not be getting my chemo /6 infusion but may well be moving onto Plan B ( Enzo or Abi) which is much sooner than inexpected. So again has anyone out there gone down this path? And if so all comments gratefully received. Thanks J.

Hi Valleyboy

Congratulations on getting through the chemo - make sure you look after yourself for the next month / don't overdo things / steer clear of wild parties, people with coughs, children with colds, little old ladies with wheezes etc so that you stay on track.

Tony only had an initial involvement with the DNA testing approach but it does seem to be an interesting and potentially important area of reasearch. His PSA dropped slightly during the first couple of chemo sessions but then continued to rise and the rise wasn't stopped by subsequent treatments (including Abi). So they sent of a bit of his original biopsy and some blood for an initial DNA test. Took several weeks to come back (around 5-6 I think) and it revealed that he was in the group of men with a specific gene marker that suggested that conventional treatments would not be effective. So then they did a whole battery of tests, MRI, CT, saliva, blood etc and sent them all off to a specialist research lab in England to check if he was eligible to join the Toparp trial. That took another 3 weeks. Everything was fine except that his blood count was too low so they gave him a transfusion and then he had to wait two weeks to see if things had improved. Sadly he had had enough by that stage and decided to go for palliative sedation rather than stagger on in a state of misery. But if he had started the trial he would have simply taken a tablet every day (usual side effects - fatigue, possible loss of appetite etc) and had everything checked at intervals to see how he was doing. Results so far are impressive with many months additional life expectancy and a reasonable quality of life too.

Hope you don't need it, but if you do it sounds pretty hopeful.

Take care.

Ruth

For all site administrators out there, just to let you know Although it was supposed to have been deleted yesterday? I've just received my personal copy of that "scam" e-mail, which I've promptly consigned to the bin.

Can't help with that, my treatment path differs from yours.

I recall asking my Onco whether Docetaxel can be repeated. She said only if the Docetaxel kept the PSA down for at least 6 months after the initial course of treatment.

There are other chemos, namely Cabazitaxel and Mitoxantrone.

After reading many of the recent posts on our site I can't help but notice that many of you are having serious concerns regarding your rising PSA Nos even tho in many cases your readings are 0.1--0.4--4--9--15--19 etc. So where does that leave me? As my current PSA is 217, (down from 1547 in February), yet with my weight loss, diet and fitness regime I've never felt better?? I'm even back playing golf, after 6 months off, (walking 9 holes whist using a buggy for 18). however should I be more concerned at my Psa Nos? Or is there anyone out there, like me, with advanced PCa, feeling "relatively" good, yet still coping with a higher than normal PSA reading?
As stated previously I have recently completed my 1st course of chemo,(6 cycles), am still on Degaralix injections every 4 weeks, and take two steroids, prednisilone, every day, I have a follow up 'way-ahead' consultation meeting with my onco on the 11/09/17, by which time I will have had another comprehensive set of blood tests and a full body C T scan for comparison with my original tests/scans from Feb.
Any/all comments gratefully received.
Thanks J.

Ok--see thread above for my history to date----PSA in March = 1571 = Advanced PCa with bone mets---- PSA now= 225------As stated above I finished my initial 6 chemo infusions in July and am now on just hormone injections (degaralix), every 4 weeks for life.
Just had a 'way ahead' meeting with my Onco who states that there is no change in last weeks body scan from my scans in March so all ok there,-- my testosterone is still surpressed so all ok there, liver function test satisfactory, --blood glucose test satisfactory, (no diabetes issues).
--Additional PSA test taken today with result back next Monday, (18th), she will then phone me with result and if it's the same and/or lower than in July then I ll be going on a 3 month treatment holiday with my next onco appointment booked for 11/12/17.
However if it's higher then depending on the number she ll be considering additional hormone treatment in tablet form, not abi or enzo at this stage but if required they are options for later.
Also told me to stop taking steroids from tomorrow so that's me (with regard to PCa), tablet free!!
So dependant on PSA Nos next week my new regime could be just hormone injections every 4 weeks coupled with 3 monthly PSA checks?
My General Heath is fine, I'm back playing golf at least twice a week, coupled with walking/cycling as required. So all in all a positive outlook ----let's just hope I've hammered the PSA too??
All the best J.

Great news
Best wishes and enjoy your pint
Debby

Great news

Hi all, Just a quick update, as you can see from the above thread I’m now on a chemo and steroid “holiday” till at least the 18th Dec.
However yesterday at 09-00 I had my 9th, (every 4 weeks), degaralix hormone injection and as usual within a couple of hours I was suffering from burning and pain around the injection site and this usually brings me down for about 3–5 days.
However as I’m no longer on chemo or steroids I thought what the hell and took a pain killer, (co-codamol 30/500mg) and to my great surprise not only did it calm everything down but as I’m now pain free I feel a lot better too?
To date I ve taken 2 tablets yesterday at 19-45 and 02-45. Whilst today I’ve taken one tablet at 10-00, just cut the grass approx 1 acre, and depending on how I feel Later i may take another before I go to bed.
Submitted for information just in case someone out there is suffering similar hormone injection side effects. Hope this helps as it’s certainly working for me, just wondering why I didn’t use them following earlier injections ?
All the best
J.

Great news and long may it continue.

Great news, as other have said long may that continue. Ian.

Hi all, as mentioned above today I had a phone call from my practise nurse stating that from the 29 January I will be moving from monthly Degaralix hormone injections onto 3 monthly Prostate/3 injections.
Also approx 1 week after receiving my first Prostate injection I have an appointment booked with my oncology consultant to see if I also need to move onto Enzalutamide?
I notice in the information sheets produced for Prostate/3 that in some cases it causes a “flare-up” re PCa symptoms and wondered if anyone out there is—
A—on Prostate/3? If so for how long?
B—experiencing any flare up issues? and/or any other issues associated with this drug.
Thanks
J.

5/2/18–Well not such good news to report— just back from meeting with onco and my PSA has risen rapidly from 128 to 322, (1547 at diagnosis), yet still feeling good??? And only recently back from a golfing holiday in Portugal?!
However she states that even tho my testosterone is low at 0.5, I’m now hormone resistant and will soon be going back onto a 2nd chemo regime of 6 x infusions every 3 weeks but this time it’s going to be Cabazitaxel which is a stronger chemo than Docetaxel.
So that’s my summer Golf messed up, same as last year, but hey-ho if it’s got to be done then so be it.
Obviously as I feel ok I was a bit down after initially hearing the news but I’m ok now, just been for a walk and have now got my head back on and once again look forward to the next challenge on my PCa road.
Nb
Comments welcome from Anyone out there with experience of Cabazitaxel treatment?
Thanks
J.

Hi Sorry to hear your news;

I have had both Docataxel and Cabazitaxel and i found Cabazitaxel was no where near as harsh as Docataxel

Don't write the golf off just yet.

Anything you want to know just give me a PM

Si