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Journey begins with Cabazataxel

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User
Posted 05 May 2015 at 18:18
Just had 4th cycle. PSA down to 4.5. Last cycle Tim has felt well although days 6-10 felt a bit off colour and lost a bit of his taste. He has a CT scan next week and we see the oncologist the following week for results, we are then hoping all goes well for next cycle as we have booked a holiday to Jersey which we are both looking forward to as we lived there for 3 years in the 80's.
Linda

Edited by member 05 May 2015 at 20:13  | Reason: Not specified

User
Posted 08 May 2015 at 14:02

Hi linda hope all goes well for you,
And a holiday on the cards is great can I just ask you about travel insurance we do have some in
Place but just like to compare notes as we love our holidays and hoping to go Greece in September
But if we could get a sneaky one in whilst on treatment to Spain would be nice.
We have our hospital appointment later today so far things quite good on this chemo getting ready for 4tth cycle next week.
Kind regards sue.

User
Posted 08 May 2015 at 21:10
Sue, one reason we decided to go to Jersey was insurance, we haven't got any, of course we are risking if Tim isn't well enough to travel we lose a lot of the cost of the holiday. Once there we will feel happy that there are good medical facilities and also we have friends there. Originally we had wanted to go on a cruise but our oncologist was not happy about that as she said if Tim did get an infection she wasn't sure they would be able to treat him well enough whilst at sea.
I hope your hospital appointment went well today and all goes well next week.
Linda
User
Posted 09 May 2015 at 06:37

Hi linda
At the moment we have a annual policy with nationwide it cost £85 it includes
Prostrate cancer and a few other bits added on ie blood pressure etc.
We pay £10 a month into a flexi account to have this . I was very surprised at the low cost and
Rang them back several times to check!
Yes our appointment was routine psa not come down yet as only had two treatments but
Apparently that's quite normal my oh has had a numbness around his lip she said that's common to
Not due to treatment but bone pressure has anyone else had this?
Apart from that all ok we was told perhaps do 8 cycles now she's talking 10 !
Sue.

User
Posted 12 May 2015 at 12:40

Hi everyone. Oh had cycle 3 yesterday, however in two weeks the psa has gone from 109 to 169. Bone scan was done on Friday and ct scan is on the 20th. See onc on the 26 for results. As usual all aches and pain has disappeared after chemo and still no nasties. We both think the onc will stop now due to the rising psa. I also heard the nurse talking to onc yesterday asking should she go ahead with the denusomab injection has his calcium was 2.3. This seems a little low but can't find anything on Google, everything seems to be about high calcium levels. Well more waiting and worrying. Hope you are all doing well
Love to all joy xxx

User
Posted 14 May 2015 at 11:34

hi everyone cycle three yesterday and no pains or anything this time my oh usually has two painfull days then everything ok but this time nothing he sat there last night waiting for something to happen! Fingers crossed x hope everything is going well for you.
Sue.

User
Posted 21 May 2015 at 18:59
Just back from consultation with onco prior to 5th cycle and after CT scan. All results are really good, the cancer round the kidneys and various other places in the peritonium has shrunk and all the lymph nodes affected have also shrunk. His PSA had also dropped again by another 25% to 3.8. We know that this is just one step on the rocky path but hopefully it will allow us to have a relaxing holiday in Jersey next month!
Linda
User
Posted 06 Jun 2015 at 16:32

Hi just had fourth round of chemo at the moment bloods seem low so going for
blood test Monday to see if it has dropped again,possible blood transfusion but not sure yet
Day four of treatment but very tied and ache in arm which has put my oh in a bad mood as things
Are generally good still never mind !
Take care .
Also can't think they were too low as he had his treatment ?

User
Posted 06 Jun 2015 at 18:52

Well after suffering all day with this arm ache/ pain and feeling rubbish
6pm tonight all aches and pains gone 😃 what a roller coaster this is !

User
Posted 07 Jun 2015 at 09:15
Sue
It certainly is a roller coaster ride in every sense imaginable!
Glad your OH is through 4 treatments now, they would not have proceeded if his blood work was out of limits.
The arm aches are a common SE, well aches anywhere are to be honest.
If his bloods are a bit low in areas they nay give him a transfusion of red cells or plasma these really do give a boost to well bring for a while and can be repeated fairly regularly. Is your OH having Zometa or Denusomab to try and provide bone strength?
Make sure you take good care of yourself as well.

All the best
Xx
Mo
User
Posted 07 Jun 2015 at 09:44

Which arm Sue? Don't forget that the signs and indicators that he experiences might not always be to do with the prostate cancer ... If that was a pain down his right arm with tingling fingers or lips, it might be a good idea to speak to the GP in case it was his heart?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jun 2015 at 16:34
Hi all I am a little late posting as we have had an eventful few weeks. Results of ct scan good shows no soft tissue or organ involvement. Bone scan however shows progression with a large deposit on the left hip and femur. Also urine problems getting worse. Oncologist arranged appointments with orthopaedic specialist and urologist.
The orthopaedic guy says no pins needed yet but will see us again in two months.
The urologist however was a little different. Three attempts at the flow test, scan showed 450 ml in the bladder but the best output was 25 ml. Going in on the 26 for a Turp procedure. Downside the chemo has to be stopped for a while because of increased risk of infection, and the chemo definitely helps with the pain. Last psa was a slight inc from 169 to 173 so goodness knows what it will do without the chemo. Praying and hoping the Turp goes well.
Hope everyone else is doing ok. Take care all joy
User
Posted 09 Jun 2015 at 19:02
Hi I had TURP 2 years ago this month, in hospital just for 4 days. A few minor issues, it made such a difference for me as I had a catheter in for 6 months.

Hope it goes well for you, Arthur
User
Posted 09 Jun 2015 at 20:26

Thank you for that hubby is worried but when he asked if he would be incontinent after he was told very unlikely but if they didn't do it he would because the bladder would overflow. Did you need pads for long after.

User
Posted 10 Jun 2015 at 10:27
Hi

Fortunately only for a few days, I got a stock of pads in via the district nurse but didn't need them in the end.

Arthur
User
Posted 10 Jun 2015 at 12:00
Joy
when Mick had his TURP he was retaining about 200ml of urine all the time and that was cuasing infections, he was due to go in for his biopsy at the time so the urologist decided he would "fit him in" for both procedures at the same time. He went in at 7.30am but did not get to theatre until nearly 5pm as there were one or two surgical emergencies which bumped him down the list. However he had the procedures done under a spinal block anaesthetic was back on the ward (complete with catheter) about 90 mins later tucking into sandwiches and a cuppa. They kept him in overnight to flush fluids through and check his output, By mid morning the next day they declared his urine was relatively blood free and removed the catheter. He had to drink another load of water so that they could be sure he would empty his bladder fully when he did pee which about lunchtime. They checked volume and did a bladder scan with a litttle hand held scanner. Then he was discharged. He was a bit sore from the biopsy and every now and then over the next 5 dyas or so he would have a little bit of clotted blood pass in his urine which he had been told to expect.
He had no leaks, mishaps or any other urinary issues in fct he was back to pre PCa Mick for a while. If his cancer had not been so aggressive and if he had responded to any treatment at all I am sure that TURP would have made him feel much better for a long time.
Hope all goes well for your OH and soon so that he can get back to his chemo.
By the way PSA often rises immediatey after a TURP as the cancer does not like anything in what it considers to be home territory.

best wishes
xx
Mo
User
Posted 10 Jun 2015 at 13:22

Thank you Arthur and mo for the replies they both sound very promising. It was quite a week last week after the urologist Maurice wanted a macdonalds strawberry milkshake as he can taste those normally after chemo messes his taste up. Well in macs they have some chairs with stupid legs that stick out into the aisle and he went flying, I was so scared that his hip or leg was broken especially after talking to the othopeadic guy, but all was well just a few bruises for him and a thumping heart for me. Take care both of you and once again thanks

User
Posted 10 Jun 2015 at 13:34
Joy

My experience whilst in hospital, apart from the couple of extra days I stayed in was very similar to Mo's post regarding Mick. Hopefully it will follow a similar pattern for your OH. I remember me and someone else desperately wanting to wee so we could go home but they wouldn't let us out until we'd "been" !!

Arthur
User
Posted 15 Jun 2015 at 22:01
Tim had his 6th cycle today. His PSA was down a bit to 3.3, a smaller drop than previously but still going in the right direction. His onco says she hopes he will be able to have 10 cycles. He certainly doesn't feel too bad with this chemo. Days 4 to 9 he feels a bit grotty and loses his taste a bit but after that he has felt fine. His main problem is sleep, he goes to sleep but wakes at 4 or 5 and can't get back to sleep as his brain begins to think of all sorts of silly things he has to do! We managed to have a lovely 10 days in Jersey, weather was brilliant and I think it did both of us good.
Joy, I am sorry that Maurice has to have a break from the chemo whilst he has a TURP, I hope all goes well with that and it's not too long before he can go back on the chemo.
Linda
User
Posted 21 Jun 2015 at 13:07

Hi linda nice to hear you had a nice holiday.
It seems are journey sounds similar to yours with the disturbed sleep but bearing up quite well
We are having a break from treatment number five and going to Greece for two weeks we feel while all is well we are going to try and balance this roller coaster with a bit of normality
The oncologist agrees with our views so we are off Tuesday .
Take care everyone. Sue.

 
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