Chemo and HT combo advice?

User

Posted 04 Aug 2016 at 08:34

Hi All

Anyone have experience of HT and chemo being used together at the start of treatment for advanced Pc? Advice much appreciated to help us ask the right questions and make the right decisions. Many thanks.

User

Posted 04 Aug 2016 at 08:34

Hi All

User

Posted 08 Aug 2016 at 08:03

Thanks, Eleanor, I'm relieved that you have taken my comments so well - I wondered afterwards if I should have kept quiet. Hope and positivity are so important, but then again, hope can be a cruel thing too. We are learning, slowly and painfully, to find some positive aspects at every stage, and I hope you will too - with any luck, for a long time to come. Good luck with the treatment, whatever you decide. Tony really didn't find the chemo too bad at all, but bear in mind that it's not an irrevocable decision - your OH can always drop out if the side effects are too unpleasant.

Marje

User

Posted 16 Aug 2016 at 14:27

Just a thank you to everyone who responded to my request for info about HT and chemo. We saw the consultant today, armed with all your advice, and my partner will start chemo next month and join the current Stampede trial. All hopeful. It was a massive help hearing from you all (successes, difficulties and disappointments) and I really really appreciate your support. The video and report about the Stampede research were particularly helpful. It makes such a difference to feel that we aren't on our own in this.

Thanks. Ex

User

Posted 16 Aug 2016 at 19:39

Hello Eleanor,

I am glad your consultation went well today.
My Dad was diagnosed 2 months ago with PC with extensive spinal, pelvic and rib bone spread. After a few twists in the road in the form of admissions to hospital for pain control, he finally had his first Doxetacel chemotherapy yesterday.

His consultant told him that on average it can add 2 years to his life and she only recommended it for those patients who have the best chance of responding, so take it as a positive thing that your OH has been given the opportunity to have it:-)

He is also on monthly Zoladex HT injections.

I am of course worried about the risk of infections and my Dad's ability to spot them and report them now he is on chemo but I am trying not to smother him and give him back some control over his condition. This forum has been invaluable to me these past few months, I hope you find it to be the same.

All the best, G.

User

Posted 17 Aug 2016 at 13:49

Hi Eleanor,

Again, I'm sorry to hear you are in this situation and I can't give any more advice than you have already been given unfortunately. All I can do it tell you that my dad was diagnosed with advanced prostate cancer in February this year. He started HT injections pretty much straight away and his chemo in April. He's now finished his six sessions and we had a catch up with his oncologist on Friday. He said he was very happy with the way dad has been with the treatment and his PSA is down from 33 to 0.3. He doesn't need to see Dad again for another 3 to 4 months. We all think this is great news. The oncologist didn't say much more than this and this didn't involve anymore scans. Not sure if we should be asking for this, but dad feels great in himself so I would say if you are being offered the opportunity for HT and Chemo, go for it! Hit the cancer with everything you can! Xxx

"Some people care too much. I think it's called love." by A.A. Milne

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User

Posted 04 Aug 2016 at 09:02

Hi, sorry you need to ask thus. I had chemo ( docetaxl) for 6 sessions over 18 weeks on diagnosis, then a month iff and then 6 sessions of RT over 6 weeks. My onco said that there is some evidence that RT to the " mother ship" can reduce the pace oif subsequent PSA growth even though if one has advanced PC the cancer is already out so it sounds like your onco has the same view. My PC is in my lymphs so am t4 n1m1 a, it may be different if you have locally advanced PC but I guess the principal is the same.

As for side effects, the usual for chemo, hair loss, numb fingers and toes, black tongue initially , loss if taste, dried blood in my nose in the mornings, occasional feeling sick but tablets they gave me sorted that. I did manage to keep running and dud 2 marathons on weeks 13 and 15 of chemo. Side effects of RT, none for six months then radiation proctutus is bleeding bottom, not an issue but a bit concerning at first, quite minor.

I took the view, rightly or wrongly, that I know little about PC, personally I like to rake action do if the quack says he wants to do something there is usually good reason. I did ask lots if questions at the time about why thus course opposed to others I had read about and he explained reasons for everything which made me happy. My tumblr/ lymph glands shrunk from3.5cm to 0.5 cm after treatment which us normal size so it worked for me. I know it will come back but the smaller things are at that time the more chance the docs have to find another working solution.

Feel free to keep asking any questions to the forum.

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 04 Aug 2016 at 09:28

hi
have also had chemo with ongoing HT, the chemo same as kevs over 18 week, had very few side affects, didn't loose the bit of hair on my head, no sickness, had a lot of sleepless nights, so slept in spare bed, also made me snore louder, stayed at work for a while but had to much fatigue

my grading is T3b M1 N0 spread to bone but not lymph nodes

HT still on it prob be on it till it fails, biggest issues are tiredness and shortness of breath, like kev I was a marathon runner but I have stopped running at the moment
have a lot of bone pain in my hips and pelvis when I run makes it difficult to walk

spoke with a consultant last week
told me that the early chemo with HT will extend my life and give a better quality of life

always ask to see any scans and for copies of notes

regards
nidge

Edited by member 04 Aug 2016 at 09:33 | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 04 Aug 2016 at 10:11

Hi Kev and Nidge

Thanks for your really helpful responses. Think the decision is becoming clearer - part of the anxiety is to do with the fear of chemo and a desire to put it off for as long as possible! So it's great to hear that you have faced it and handled it and are still going strong. Congratulations on the marathons Kev. I couldn't even manage to run for the bus so I'm awestruck by your determination and by the positivity that comes through from both your posts. I'll let you know how we get on. Hope you both continue to do well.

Eleanor

User

Posted 07 Aug 2016 at 14:26

Hi Eleanor,

I was dx last May and put on HT straight away with early chemo recommended which started in October for 18 weeks. My doc said all trails showed that having chemo early improved treatment. It was said gives life expectancy on average 2 years more ( but to be honest I expect to be round for another 30 years so 2 years is neither here nor the there!). I was very nervous on the thought of having chemo but in fact it was a lot easier, for me, than I thought and all went smoothly. With the HT and chemo it brought my PSA from 294 to 3.9 which was really pleasing. Dr also said that I could have further chemo in the future, which is good as it's another bullet in the gun to zap the little bugger so!
I don't know what your OH stats are but always get a look at the scans, PSA levels, etc. I used a dictaphone on my phone to record the consultation and found it very handy to go over it in the evening.

Good luck for the treatment.

Steven

User

Posted 07 Aug 2016 at 18:52

Thanks Steven - really useful tip about recording the consultation. It's hard to take everything in and I realise that we don't actually know if the PSA has gone up since the initial GP test, or how far it's spread (we had a quick glance at the bone scan which wasn't good but we don't have anything written down) and we're not sure what HT my OH is on! Will be better prepared when we go in on 16th. And less frightened thanks to you and others on the forum. Hope your PSA stays low and that no additional zapping is needed for a long time. Good luck. E

User

Posted 07 Aug 2016 at 21:34

Hi Chemo is not fun but all the results show benefit in having early in conjunction with HT. I recently found a video re the STAMPEDE trial which might be helpful. https://vimeo.com/149626704.
My docetaxal side effects were similar to others with nail problems, numbness in feet and lymhedema in leg. The first four sessions were fairly straightforward but the last two were a lot harder. I believe the treatment is cumulative so it will often be worse for people towards the end. I would certainly recommend any exercise you can manage to keep this up through the treatment. Generally days 5 through 8 of each cycle have the most side effects, so you can plan for that.The actual infusion I found very straightforward, bring a book :)

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"

User

Posted 07 Aug 2016 at 22:14

This is a link to the findings of the Stampede trial last year: http://www.ascopost.com/News/27615
You will see that on average, men with metastatic disease (and on HT) who received early docetxel survived for 65 months rather than 43 months without it. That's where the "two years longer" comes from: It's two years on top of an already very limited life expectancy, which sounds like a worthwhile benefit.

But an average is only that; it's not a minimum, and it's by no means guaranteed. My husband Tony had early docetaxel last year, finishing in March 2015. When these trial results were published in June, we were delighted, and hoping for several years more of good quality life together. However, by July his PSA had started to rise again, and by September it was obvious that the HT was failing to control the cancer. Enzalutamide brought several months' respite, but now the cancer is in his bone marrow, making further treatments (including further chemo) pointless. So, 16 months after completing the docetaxel, he has only palliative care from now on, and only months to live. For what it's worth, Tony tolerated the chemo very well, with few side effects (and arguably few effects at all!)

I'm sorry if this all sounds gloomy, but look at the positive side of this lottery: for every man who gets no benefit from docetaxel, there will be someone else who gets years of extra life from it. You could be lucky, or even average, either of which makes the chemo well worthwhile.
Marje

User

Posted 07 Aug 2016 at 22:57

Dear Marje

Thank you so much for taking time to send me the link to the Stampede trial - and to tell me about your experiences.Both very helpful.

I'm so very sorry that Tony didn't get the hoped-for benefit of the docetxel and sorry too that you are now both having to deal with the next and final stages of the illness. I have looked at your posts on the end-of-life section of this forum and was very moved by your courage and clarity. I know intellectually that we're on the same journey but it hasn't sunk in emotionally yet. Perhaps that's the best way - to just stay hopeful and focused on the present rather than constantly worrying about the future. Either way, your experiences and your kindness in sharing them mean a lot.

My best wishes to both of you.

Eleanor x

User

Posted 07 Aug 2016 at 23:25

Many thanks Martin. I've had a look at the video and it's really clear and helpful/hopeful. I'll ask the consultant about this treatment when we go for the next appointment. Sounds as if it offers the best possible option under the circumstances and that the side effects are bearable if not pleasant. Good luck to you - hope the effects of the treatment are longlasting.

Best wishes

Eleanor

User

Posted 08 Aug 2016 at 08:03

Marje

User

Posted 16 Aug 2016 at 14:27

Thanks. Ex

User

Posted 16 Aug 2016 at 19:39

User

Posted 17 Aug 2016 at 13:49

"Some people care too much. I think it's called love." by A.A. Milne

User

Posted 04 Sep 2016 at 15:07

Hi All

My OH has advanced PCa which has spread to the bones and lymph glands. He's been on HT for 6 weeks - degarelix - and is due to star chemo later this month. Over the past few days he's been feeling increasingly nauseous and tired/wobbly. Today his bone pain returned, legs and shoulders, as a background ache along with occasional spasms of severe pain in his legs. Since it's Sunday I can't get hold of anyone so I thought I'd ask the experts - you.

I'm worried about the possibility of MSCC but don't want to drag him down to A&E unless it's really necessary.

Any advice appreciated.

Thanks

Eleanor

User

Posted 04 Sep 2016 at 15:14

It could be a tumour flare as a result of the cancer objecting to the lack of testosterone. If he has had tingling in his feet / legs, or the wobble that you refer to is actually problems controlling his legs, and you know that he has spinal mets phone 111 or 999 and tell them that very clearly. They will advise and may decide to take him in for a check.

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

User

Posted 04 Sep 2016 at 15:25

Thanks Lyn...he does have spinal mets but at the moment the wobble is just weakness rather than problems controlling his legs. That's really clear advice though and very helpful. This forum is such a blessing!

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