Chemo and hormone

User

Posted 29 Mar 2016 at 22:46

Hi debby
Lovely to see your hubby is doing ok with his chemo. PSA down to 0.2 that's brilliant. Hope it continues for you.
Lesley x

User

Posted 18 Apr 2016 at 13:15

4th chemo finished with similar effects as others so very lucky .OH still restless at night and suffers from numerous flushes all day long followed by coldness .
PSA 0.01 so really thrilled with that so soon after starting treatment . Asked about if any scans would be done after chemo finishes to check on progress but was told only if PSA levels rose again ,is this right or can we keep asking? Also will be starting on arm j of stampede trial with the 2 hormone tablets straight after chemo, will OH still have 3monthly injection as well ? If anyone having similar treatment would like any feed back .also I'm concerned about if all the treatments are given together early after diagnosis where do we go if /when they stop working ,what's left to give?
Can anyone give name of cheapish holiday insurance hopefully get away in September on a cruise around the med (boy do we need it )
Thankyou

User

Posted 18 Apr 2016 at 13:19

Alpha Insurance the cheapest

User

Posted 18 Apr 2016 at 13:44

I've just used Boots holiday insurance. You have to be very honest with your responses to questions , so have all the facts to hand. I've paid £180 for four people including myself on a two week Med cruise. I think that's excellent value. Ensure repatriation is included should something horrendous happen ( it won't ). Go for it. We are ! Making some family memories
Chris

User

Posted 01 May 2016 at 12:17

HI Debby,
Re the end of chemo, I had Bone and CT scans at end of chemo to get final results. Before the consultation I was researching all the next steps but at the consultation the Dr said PSA done to normal range and reduction of mets in bones so just keep on the HT and monitor. I thought chemo would be out but she says that it can be used again if/when it returns and who knows what other treatsments will be around in a few years. As she says the gun is fully loaded if its needed.
Steven

User

Posted 15 Jun 2016 at 20:13

Haven't posted for a while as going through a bit of an emotional stage again and reading others stories good and sad didn't help as I felt the good stories is where I wanted us to be and the sad ones were maybe where we were heading ,but feeling stronger now .
5th and 6th chemo done and dusted with some minor issues on number six mainly tiredness OH finally took 1 day off ! And numbness in ends of fingers and toes .
PSA still at 0.01 so good news ,and this is first day of trial drugs arm j ,going to have CT scan on Friday which hopefully show some improvement .
Have joined a P&O cruise forum which I must say is a bit more lighthearted !! And also can forget for a while .
New grandchild due in 2 weeks really looking forward to that ,
I must also praise the amazing staff at QA hospital in Portsmouth even though our NHS is getting slated they are so dedicated .
Thanks for listening
Debby

User

Posted 18 Jun 2016 at 20:02

Hi Debby
Just been reading your posts about your OH diagnosis and the treatment that followed with much interest as my OH is just starting out on this scary journey.He was diagnosed in May this year with advanced prostate cancer he's 58. He's been on ht for two weeks and just changed to injections this week, chemo to follow in two weeks. Treatment was held up briefly as a lump was discovered in his left breast, its a non aggressive type of breast cancer which is OK to be left until after chemo has finished. Its been a roller coaster journey so far , lots of tears and sleepless nights. Glad your husbands treatment is going well and hope it continues this way. We are worrying now about how the chemo will affect him as our Son is getting married in three weeks.

Take care
Debbie

User

Posted 18 Jun 2016 at 22:28

I think it might be possible to delay the first chemo until after the wedding? It would be a shame to spoil such a special family moment

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

User

Posted 19 Jun 2016 at 01:52

Hi Debbie sorry you find yourself and OH in this position ,everything seems so unreal and frightening at the start ,as Lynn said you may be able to delay the start of treatment but if you wanted to get started without delay our experience was nowhere near as frightening as we thought it would be ,I envisioned going into a room of doom and gloom but in reality it was bright and cheerful with lots of caring nurses to reassure us , Gary Was talked through everything and from start to finish once the drip was put inside his hand it was 1 hr 10 mins that included the anti sickness med and flush .
We'd heard all different stories of sickness ,hair loss and more but luckily Gary had none of these ,Gary works away quite a lot and was worried about his hair falling out on the B&B pillows so we shaved it to a no 1 but by the time his next session came it had grown by about 3mm so we shaved it again ! This time it's grown back but at a much slower rate and it's nearly back to pre chemo length just a bit greyer .The only real problem Gary had was sleeping not sure if that was due to the hormone injections and hot and cold flushes that he still has or the steroid tabs taken in conjunction with chemo .
Gary worked right through the chemo 6 sometimes 7 days a week he only took 1 official day off about a week after the last session I don't think he realized how tired he was until he slept all day ,even now he doesn't sleep soundly tossing and turning all night . The first session seems to take forever to come around but you'll be surprised how quickly the whole coarse passes .
As for drinking alcohol the first weekend was a No no the second a couple of shandys then the third a couple of pints or glasses of wine .i still have ups and downs but our 4 grown up children are a great support you'll be surprised how much stronger they are when you need them ,
Good luck for your sons wedding it will be a fab day which ever decision you make ,we're waiting for our first grandchild any day now with another in November ,if you need any more info don't hesitate to ask , with lots of valuable knowledge the other members are always helpful ,
Good luck in your journey,
it does get easier
Debby

User

Posted 19 Jul 2016 at 08:35

Chemo now finished ,OH came out pretty unscathed with all hair just thinner but a small amount of numbness in one of his toes ,hopefully over time this will get better.
Scan results were good ,liver, spleen ,pancreas and kidneys are good ,significant improvement in the lower para aortic and pelvic nodes and just and small residual focus on pelvic side wall that was previously 37 mms X 30mm now 20mmx 13mm and prostate significantly smaller .excellent response to treatment with no new sites.
Gary now started on arm j of stampede ,so just a couple of questions to anyone else on this arm :
First after the chemo you get a new base line of the disease ,is this the best it will get or with the new drugs can it shrink more ,
And also I know Healy stopped taking abiraterone due to some issues but carried on with enzalutamide ,has anyone had any other issues as Gary is getting more hot sweats and also in evenings muscular pain in thighs and achey body pains .will this improve over time or could this be it or a deal breaker to stopping or reducing quantities of meds ,? One of the Drs thought that if you discontinued one of the meds the trial would stop ??? .
One good bit of news is we've got a lovely new grandson ,he definitely refocuses your mind
Thankyou for any info and any more that may be of help
Debby

Edited by member 19 Jul 2016 at 08:36 | Reason: Not specified

User

Posted 19 Jul 2016 at 11:27

Hi Debby, I've been on Arm J for just over a year now, I didn't have early chemo though as it wasn't available when I was diagnosed. I get most of the usual hormone treatment side effects aches in bones and muscles, hot flushes, now got small man boobs , put on a bit of weight etc etc. but they are all fairly mild and don't really effect day to day life. Tiredness is probably the worst but this comes and goes. I have now joined a gym and when we get back from holiday I plan to go 3 to 4 times a week, this should help with the tiredness and aches, so my trial nurse tells me !! The treatment seems to be working well for me PSA came down to undetectable and is still there now a year later, I had a bone scan in January which showed a good reduction in the bone mets. I also get my testosterone level checked every few months and that is also undetectable.

so all in all life's good considering :-)

User

Posted 14 Aug 2016 at 09:40

Some advice needed please , OH just got his ED appointment and not really sure if any of the meds are better than others ? I think the pump is a Nono but I understand there are different types of meds that react differently . He's currently on hormone injections and on arm j of trial so don't know if certain meds interfere with existing drugs .
Also because he's on arm j and getting muscle pain does this ease off / just get used to it or can they alter dosage and still stay on trial ? He's only been on trial for about 7 weeks so early days but good results 0.01 PSA
Thanks Debby

Notification

Join the online community now.