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Early chemo treatment - side effects

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User
Posted 29 Nov 2015 at 09:40

My brother had his first chemo about two weeks ago. He was diagnosed in April and is T3a, N0 M0, PSA on diagnosis 172 (it's now down to 0.7 after 6 months HT). Treatment plan is six lots of chemo followed by RT, then indefinite HT.  He was offered early chemo because of the results of the Stampede trial which showed that newly diagnosed men with advanced Pca lived a little longer.

He's had some quite severe side effects - fatigue, not sleeping, sore mouth and now has a bad cold. He's only 54 and is normally fit and healthy but it's really taken it out of him.  The thought of another four months of this is quite daunting and we're wondering if it's going to be worth it as the trials showed that men who had early chemo only extended their lives by about a year. Of course we want to try everything we can to control his disease (we've been told it's unlikely to be curable) and need to weigh it up carefully.

User
Posted 29 Nov 2015 at 12:06
Dear Big Sis

I cannot comment on the effects of the chemo, but from what I have read, early chemo is the best treatment that you can get at the moment, and not all trusts are doing it, so in that sense your brother has been lucky to be offered it.

I am sorry to hear that the side effects are so debilitating, and others will be able to comment on these.

In terms of the diagnosis, I am no expert but I think he may be in the cure camp, or the chance of a cure, looking at the scores, again others will comment.

I hope he will feel a little better soon.

Alison

User
Posted 29 Nov 2015 at 12:39

I would have the same reaction as Alison, his scores look as if he has a curative diagnosis with no spread evident in either soft tissue or bones (N0, M0) . This makes his treatment very aggressive indeed and with RT to follow this is another indication of a curative intent. So I would think if it is all successful he has a very good chance of getting beyond this and you would not need to consider the outcome stats as the what you quote would be additional time for those who are already incurable.

I am nearing four years on from a diagnosis with bone met spread and have not yet been offered chemo (this research is very new) but still have it and other drugs in the toolbox for later. So there is so much time potentially ahead. Please keep us in touch with his progress as this is a heavy treatment. Chemo affects people differently and it seems to go through phases in the three week period. Hopefully he will get used to how his body reacts and can hope to enjoy some relief in between treatment. Good luck!

User
Posted 29 Nov 2015 at 13:35

This is very encouraging Alison and Yorkhull. His oncologist has clearly stated that she thinks cure is unlikely because his PSA was so high on diagnosis. She believes that there will be micrometastases which are too small to show up. Of course we want to think that there is no spread because it hasn't been confirmed but it's very unclear at the moment.  Great that you're doing well Yorkhull, it's so good to hear from others who are living with prostate Ca and dealing with it so well.

User
Posted 29 Nov 2015 at 13:51
Hi Big Sis

I had early chemo and then RT, I am 50. My side effects were not as severe as your brothers but I did have all of those but not in a disabilitating way. For what it's worth, the side effects go after treatment and if successful the cancer is well and truly bashed! Please encourage him to persevere as in the scheme of things a couple of uncomfortable months should be worth it in the long run.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 29 Nov 2015 at 15:36

The medics must have been fairly sure that there were micromets - i don't think Stampede accepts men in the cure camp on that particular arm.

Bigsis, as with any treatments, your brother needs to balance extending life with quality of life - and some do decide to come off the trial or to stop a particular treatment - but he is also doing something marvellous that will benefit the thousands of men who will come along in the future. The side effects hit some more than others - there are things he can do to minimise some of these. Does he have frozen cubes of pineapple to suck during the infusion, for example? My father in law learned to manage his social diary so that for the few days in each cycle, he could just stay at home and sleep. The rest of the time he was very well and able to do what he wanted.

Edited by member 29 Nov 2015 at 16:54  | Reason: Not specified

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

User
Posted 29 Nov 2015 at 15:38

Kev,, it's great to hear from you.  I certainly will encourage him and let him know how well things are working out for you.  Lynn, thanks for the tips and your sound advice, as ever.

User
Posted 30 Nov 2015 at 06:34

hi big sis

I am also on the 6 lots of chemo got my 4th dose this thursday, must be one of the lucky ones with the affects, not been that bad bit more fatigued and lack of strength feels like the aches in the shoulders you get with flu, but all managable, still getting out and doing a bit of running

I assume the chemo is Docetaxel, the hormone therapy is it prostap or zoladex, as I am wondering if one works better than the other with the chemo, am on zoladex myself, but would have thought the trial would have identified that

not been offered RT afterwards when asked if they would re scan after treatment finished, was told not unless they thought I needed to be so how the heck are they going to tell what has happened

regrds

nidge

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 30 Nov 2015 at 09:31

Hi Nidge, thanks for your reply. Bro is on Prostap but not sure if that makes a difference. Glad you're not getting too many side effects and that your treatment is going well.  Not sure about re-scanning when treatment is finished, maybe someone more experienced will know. From what I know, re-scanning doesn't seem to be done as a rule and they just keep tabs on PSA when it's all over. Might be wrong though.

User
Posted 30 Nov 2015 at 15:03
Don't despair. Have there been any interim PSA readings? There will have been blood tests, eg, to check on white blood cells and almost certainly PSA is being tracked. If the level comes down to 0.2 or less, survival prospects will be much improved. It will seem worthwhile then.

Auld Codger in Northants.

User
Posted 01 Dec 2015 at 12:18

Thanks Auld Codger, yes PSA coming right down, currently around 0.7 I think. His next reading is quite soon. He seems a little better today but is going to be zapped for his second chemo next week! Onwards and upwards.

User
Posted 01 Dec 2015 at 12:54

Hi Big Sis,

Like Nidge and Kev, Ive recently started chemo and just finished third round, so almost half way through the cycle. My SE havent been too bad with only really tireness creeping in and a few sleepness nights due to night sweats etc.
One of you worries seems to be that early chemo suggests extended life span of 12-18 months but at this stage, I don't think, its worth worrying about as no one really knows how long you have ahead, be it 5/10/15/20/25 years but if the early chemo helps, then its worth it. Its also good that the PSA has dropped significantly early on. Not sure if you brother gets a PSA test at every session, I do, and I am also get all the scans at the end of the cycle so hopefully you brother would get that as well, or you should insist on it as well.
Hope his next rounds go better.

User
Posted 02 Dec 2015 at 12:54

Hi Toast, good to hear from you and I hope things go well for you. You're right, not much point in worrying about how much it might extend life at this stage. The main thing is that my brother is getting all the treatment he possibly can and we're very grateful.

User
Posted 04 Dec 2015 at 10:02

Hi Big Sis,

I am 58 diagnosed T3 N1 M1 Geleson 10 in Feb 15,  I have had RT on the Stampede Trial and whilst still on it they offered me the Docetaxel chemo as your brother is having.  After my first dose i was admitted to hospital with neutropenic sepsis, as a result my oncologist reduced the dose which helped all the side effects. I started getting other side effects which all seemed to go through stages of severity but on cycle 3 he reduced it again to lessen the long term SE such as nerve damage to feet and toes.

So it would seem if the SE as causing your brother to much pain and questioning whether or not to continue speak to your oncologist first to see if they will lower the dose, as this did help me.

I finished 3 weeks ago and have a CT scan booked for the 16th December and an Oncology appt in Feb 2016 to set a base line for going forward.

Good Luck

AlfieJ

Post Tembres Lux

 

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

 
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