Originally Posted by: Online Community MemberThanks for the info AC-----
1--Well touch wood" but my breathlessness referred to earlier seems to have cleared itself? As I'm breathing and moving as normal over the last two days, however as stated I've got chemo/5 this Thursday so I ll have to wait and see if this side effect returns?
2--also just read today's news about DNA genetic testing and whole genome testing which can allow specialists to target specific treatments to individuals thus avoiding unnecessary treatments and/or side effects? I'm obviously going to raise this with my treatment team on Thursday, however prior to this has anyone out there had any experience of this issue? Any/all comments regarding this issue most welcome.
Thanks J.
Delighted that your Chemo is finishing and your PSA results are looking good. I suspect that your scan results will be much better than before, hopefully.
I am now over 4 months in to my chemo holiday (post chemo) and enjoying life. I am back at work part time and have had a good summer so far. I meet my Onco again in September, but I pretty much know the next steps as he has already told me as such.
My PSA has already risen to 13.3 so action will be required. I will be having a scan to detect the progress of my Mets, I will be having a further biopsy so that DNA testing can be carried out to determine what future treatments will work. Chemo works very well on me so my Onco is keen for a further 6 rounds of that whilst, as he puts it, I am fit enough to take it, before they give me the softer options in later life. If I am truthful I would prefer ABI if it proves to work with my DNA, but the DNA test will be my journey route in the longer term. They get the results from some lab in Arizona apparently.
Anyway, whatever happens, the journey continues.
All the Best Valleyboy
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
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.
User
I had a private message from someone wanting to give money, is this the scam you are talking of?
User
Sounds like that's the same one
User
As stated earlier in this thread I've now completed my initial 6 chemo sessions and other than my regular 'life-long' 4 weekly hormone injection coupled the 2 steroid tabs daily I'm now on a treatment "holiday" till I see my onco for a way ahead meeting on the 11/09/17.
As you see from my initial post I presented earlier this year with no common symptoms, other than aches and pains, however my initial blood tests indicated a PSA of 1547, and further tests confirmed mets in spine ribs and skull.
My PSA then dropped to 157 by April, then rose 20 points in May with further 37 point rise in June. July was slightly better news with a 17 point reduction which allowed my 6th and final chemo infusion to go ahead.
Compared to the start of the year where I was in almost constant pain, (for approx 1 month), I'm now mostly pain and pain killers free, I'm back playing golf 2/3 times a week, walking and cycling as required.
Obviously because of the advanced nature of my illness I'm under no illusions that on-going treatment is required, and that in my September consultation meeting no doubt my onco s preferred treatment route, (after reviewing my upcoming full CT scan and comprehensive blood tests), will be discussed and mapped out.
However prior to that meeting I was just wondering if any of you out there have either experienced anything similar, and if so what was your next course of action/treatment plan?
Ps.
As I'm not too sure about this point, if required can I have more chemo sessions? Or have I used up that treatment option? Thanks. J.
User
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.
User
I think the standard now is ten cycles of docetaxel or less if the side effects become intolerable. I'm now in a chemo holiday, too.My PSA has stabilized at 1.1 and there is partial evidence that mets have abated. My understanding is that is my current treatment (like yours, zoladex plus prednisolone, though I expect to be swapping the steroid in October) could be followed by rechallenging the PCa with more docetaxel at a later stage and of course the other chemo treatments remain available.
My main reason for stopping the chemo is that it has probably done its job and we are into diminishing returns, plus unwanted side effects. In my case, the increasing breathlessness I reported in cycles 4-6 was unfortunately caused by multiple pulmonary embolisms (lung blood clots) for which I'm now self injecting with Clexane. I shall need six months to get over those anyway, so better not to endanger that recovery with further chemo.
As you can see, my case is a bit unusual, though our treatment is similar and future chemo options remain available.
Good Luck.
AC
User
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.
User
With advanced PCa, many oncos will say the PSA score is less important than how you feel. You started high; downward trends are good, upward trends are bad, and apart from that, go with your gut. I think Trevor has been in the 3000s for quite a while now, and there are others trundling along with numbers that for other men would be really bad news.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
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.
User
See above thread--Onco just phoned 3 days early!!! But all ok as my Sept PSA has halved to 112 and she even expects it to reduce further by December,!! so unless anything untoward happens that's me off chemo and steroids till at least 18/12/17. Obviously I ll keep you all posted as/when applicable, but as I haven't had a pint since January I'm just off out to reacquaint myself with a Guinness??
Take care all, J. 😀
User
Great news
Best wishes and enjoy your pint
Debby
User
User
Great news, enjoy your Guiness, Ian.
|
User
Good on you! I'll raise a glass to you (any excuse).
R