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"The road ahead"!

User
Posted 14 June 2017 12:31:53(UTC)

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.

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User
Posted 14 June 2017 12:36:45(UTC)

Sometimes the PSA rises while on chemo and it is not indicative of failure. Sometimes prostate cancer cells produce more PSA as they die off and/or as they try to fight off the attack.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 14 June 2017 18:24:07(UTC)

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.

User
Posted 14 June 2017 19:13:46(UTC)

Hi Valleyboy
I've been following your journey so far and want to send my best wishes and hope all goes well. My husband is a bit behind you and your posts have been so helpful to me, he is due to start Chemo in 2 weeks. I am just learning lots from the people who post here and really hope you can get some answers soon. Sorry I can't help but feel for you.

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User
Posted 15 June 2017 22:54:49(UTC)

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.

User
Posted 22 June 2017 18:54:56(UTC)

Chemo/4--week 1 update--met with my Onco's assistant during infusion last week and she stated, (following consultation with onco), that they aren't too concerned with last weeks 20 point rise in PSA as due to the high level I started with fluctuation can occur for a myriad of reasons, e.g. Doing too much prior to blood tests, etc. However if it goes up again prior to my next infusion, (1st week of July), then a full review may be required. As for the general situation during chemo/4, other than annoying headaches on waking coupled with extensive tiredness in the afternoons everything else seems ok. Still eating ok with little or no pain, but chemo/4 has definetly left its mark as even tho I've still got a covering of hair all over my head, you can now see straight through to my scalp!! so let's see if its still there for the next two weeks?? Hope your all coping as well as possible---J.

User
Posted 27 June 2017 15:23:47(UTC)

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.

User
Posted 27 June 2017 17:59:31(UTC)

Early indication of pneumonia?

Probably not, I'm over sensitive to any signs of pneumonia at present since it has totally f'ed up my summer. My pneumonia was only picked up from an X-ray.

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User
Posted 27 June 2017 18:59:40(UTC)

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

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User
Posted 28 June 2017 12:06:36(UTC)

Thanks Col, and whist I'm not dismissing it, as I have no other flu-like symptoms and my breathing is fine when sitting or lying down I'm hoping it's not pneumonia related--ps hope your coping with everything that's being thrown at you at the moment?

A. C. Thanks for the reassurance--And as "Big Brother" may be vetting this site??? I ll reply in code!!!!!!
Breathlessness and cough much better today, however that may be down to the fact that I haven't done anything today other than read the paper and watch some news features? Let's See how I feel tmos and then I ll consider getting my walking shoes back on because as you say, it's so frustrating to be puffing like a steam train after a short walk when thankfully up to date, the chemo sessions haven't curtailed my exercise regime to any great extent? I've also got chemo/5 next Thursday (6th) so at least I'm prepared for this side effect now, and I too will be raising these issues with my team next week.---thanks J.

User
Posted 03 July 2017 15:05:05(UTC)

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

User
Posted 04 July 2017 16:36:01(UTC)

Thanks 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.

User
Posted 06 July 2017 21:44:09(UTC)

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.

User
Posted 27 July 2017 20:31:44(UTC)

So went for chemo/6 today as PSA down 17--I know it's not much in relation to my initial Nos. but a drop is a drop??? So that's the last of my initial round of chemo, with a way ahead meeting now scheduled with my Onco for the 11/09/17. Prior to this meeting I ll be having a comprehensive set of blood tests and a full CT scan, so let's hope they are positive so that any way ahead treatment compliments what I've already had? As above if anyone out there has been down a similar road I'd love to hear from you as any knowledge you can give me prior to the 11/09 would be well appreciated. Thanks J.

User
Posted 27 July 2017 22:42:52(UTC)

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

User
Posted 28 July 2017 14:50:25(UTC)
Originally Posted by: Online Community Member

Thanks 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"
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User
Posted 01 August 2017 19:03:06(UTC)

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
Posted 04 August 2017 07:12:46(UTC)
I had a private message from someone wanting to give money, is this the scam you are talking of?
User
Posted 04 August 2017 08:27:04(UTC)
Sounds like that's the same one
User
Posted 08 August 2017 15:56:50(UTC)

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
Posted 08 August 2017 17:09:13(UTC)

Originally Posted by: Online Community Member

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?

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

Originally Posted by: Online Community Member

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.

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.

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User
Posted 09 August 2017 14:37:39(UTC)

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

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User
Posted 19 August 2017 21:38:21(UTC)

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
Posted 19 August 2017 22:22:33(UTC)

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


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User
Posted 11 September 2017 15:31:11(UTC)

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.


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User
Posted 15 September 2017 17:24:26(UTC)

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. 😀

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User
Posted 15 September 2017 17:42:37(UTC)

Great news
Best wishes and enjoy your pint
Debby

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User
Posted 15 September 2017 18:01:39(UTC)

Enjoy

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User
Posted 15 September 2017 18:57:27(UTC)
Great news, enjoy your Guiness, Ian.
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User
Posted 15 September 2017 21:05:36(UTC)

Good on you! I'll raise a glass to you (any excuse).

R

 

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User
Posted 15 September 2017 21:39:18(UTC)

Great news

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 17 September 2017 18:32:26(UTC)
What great results. I read an earlier post up I've about people worrying about lower PSA results, it's so individual that what Lyn says it spot on. Some people feel the change health from relatively small rises, but John's has gone 9, 27, 41 in 3 months, and yet he's much the same too. He's having Radium 223 but has not yet had chemo or any of the newer drugs, so we have tools left in the box. I'm not sure when those tools will be applied but I'm guessing when and if John starts to feel bad.

Cheers
Devonmaid
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User
Posted 06 October 2017 15:40:56(UTC)

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.

User
Posted 02 November 2017 12:07:24(UTC)
Hi all see above threads re my PCa history—-just been down the surgery for my (11th) Degaralix hormone injection, and whilst I was there I picked up my latest blood test results, which were taken on Monday due to the fact that I’ve had a nasty cough for the past 10 days, with antibiotics prescribed for 7 days from Monday. Anyway to cut a long story short, the cough is now starting to break, and my PSA is down to 94!! Which is the 1st time it’s been in double figures since diagnosis in March (1547)!! Also all my other comprehensive blood tests are in the normal range so what’s happening here? Been off chemo and steroids now since August/Sept yet PSA continues to fall. As stated previously I’m back to see my onco on the 18th Dec, so let’s hope my PSA continues to fall which means I may get another extension to my treatment holiday?
So it’s early “seasons greetings” from me, and let’s just hope I’ve managed to put the big C back in its box for a while longer.
All the best
Valleyboy.
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User
Posted 02 November 2017 12:23:58(UTC)

Great news and long may it continue.




If life gives you lemons , then make lemonade
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User
Posted 02 November 2017 14:00:37(UTC)

It's great to read some positive news. Lets hope for even better by December.

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User
Posted 02 November 2017 14:23:53(UTC)
Good news, I’m sure chemo continues to have an affect for some time, so pleased for you.
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User
Posted 02 November 2017 16:28:15(UTC)

Happy to hear so.
Good news are always welcome. Made my evening a bit better 👍.
Xx
Lola

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User
Posted 02 November 2017 18:02:20(UTC)

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

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User
Posted 18 December 2017 21:48:13(UTC)

Ok so it’s 125 days since I last had chemo, and 95 days since I had a steroid tablet so today I went back to see my oncology specialist for a mixed bag of results.
1-all bloods other than PSA stable.
2-PSA up 33 to 128 but as I started on 1547 she’s still not too concerned at the moment as this could just be a fluctuation?
3-Full bloods to be taken again in approx 6 weeks with a further review on the 5th Feb.
4-Then if PSA is the same or lower no treatment, (other than hormone injections), for another 3 months, however if it goes up again by Feb then I will be starting on enzalutamide as well as regular hormone injections.
5-Whatever happens my regular monthly degaralix injection at the end of December will be my last monthly shot, as from January I’m being put onto a 3 monthly regime, (either zoladex or Prostap3).
So as I said at the start a mixed bag of results for the festive season??
All in all I still feel fine, playing golf, walking and cycling as required.
However any/all comments from anyone who’s been down this possible Zoladex/Prostate/enzalutamide road would be more than welcome.
Seasons greetings to all.
Thanks
J.

User
Posted 19 December 2017 08:09:27(UTC)
I am pleased to see there is some stability in your results although a slight upward trend in your PSA, although all appears very manageable

Great news


Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 19 December 2017 21:21:05(UTC)
As you say J a mixed bag , great news on the bloods but the PSA is a bit of a clucker .
My advise for what it’s worth would be relax enjoy the Xmas festivities and get back on the bike in 2018 ready to give it some Wellie .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 10 January 2018 22:52:40(UTC)

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.

User
Posted 10 January 2018 22:54:54(UTC)

Prostate/3 = Prostap/3. I hate predictive text!!!🙈

User
Posted 10 January 2018 23:23:56(UTC)
Hi, I’ve been on PROSTAP since June 2017, had 3 x 12 weekly injections so far. I had some tumour flare for around a week from the first injection. Also had the hot flushes but touch wood These are under control from the acupuncture.
All in all side effects have been manageable so far.

Hope that helps

A
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User
Posted 11 January 2018 08:59:50(UTC)
Hi Valleyboy, I was prescribed bicalutamide tablets for three weeks to avoid/reduce tumour flare. I took the tablets for 9 days then had the PROSTAP injection. Continued taking the tablets for another 12 days. Didn’t experience any problems as a result.
Ian
User
Posted 05 February 2018 15:50:14(UTC)

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.

User
Posted 05 February 2018 16:01:57(UTC)

So sorry to hear this news. I’m watching these posts carefully as it seems likely I’ll finally be diagnosed advanced soon. Very fearful of injections and chemo. You’ve been so brave and upbeat. Hats off to you. Best of luck




If life gives you lemons , then make lemonade
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Posted 05 February 2018 16:34:14(UTC)

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 

  

Don't deny the diagnosis; try to defy the verdict
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User
Posted 05 February 2018 17:05:43(UTC)

Sorry to read this VB.

I hope it isn't as harsh as you think it might be.

We can't control the winds - but we can adjust our sails
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