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Maybe starting Radium 223 or Abiraterone

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User
Posted 08 Mar 2018 at 16:11

Told today that cancer was still not under control and I need to be scanned again to assess extent of disease and whether I'm suitable for Radium 223 or Abiraterone

My cancer is clearly bad (G9) and I'm feeling very low.  Since hormonal treatment didn't do much for long starting for me and I fear the new treatments will not do much either. 

 

Background

Sept 2016 (aged 65): Initially diagnosed with prostate cancer. PSA 91 and G9 with evidence that cancer had spread to nodes.

Given HT (zoladex) and in Feb 2017 completed 6 cycles of chemo (docetaxel).  PSA reduced to 5 and nodes shrunk.

Jan 2017: PSA numbers rising and showing resistance to HT. PSA increased to 30 and scan showed some spots to bones (shoulder and lower back).

Bicalutamide added.

March 2017: PSA now 107. Being booked for bone and CT scan to establish extent of disease. Assessment in next few weeks for further treatment, possibly Radium 223 treatment or Abitraterone.

Suffer periods of very high anxiety and great sadness.  Experiencing some mild lower back pain that may or may not be cancer related but sometimes prevents me from focusing on good things in life.

 

User
Posted 08 Mar 2018 at 17:25

Hello Mickey and welcome to the site.

I'm so sorry that you are not getting benefit from your current treatment.

I do know that we have various men on here with bone mets who have had treatment and are still with us many years down the line.
Treatments for PC evolve all the time so hopefully, once your consultants decide the extent they will tailor the treatment to your needs.

I can understand the anxiety and sadness, especially the sadness. Life as you knew it will change, but what you get is your new normal.

It takes a while to get your head round it but I'm sure you will eventually. At the moment everything is up in the air. They'll be many members on here who will tell you that once a new treatment plan is in place you will feel more in control of your new life.

Hard as it is to focus on the good things at the moment, tell yourself that those good things will give you something to aim for

Best Wishes

Sandra

Edited by member 08 Mar 2018 at 17:27  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 18 May 2018 at 20:26

An update

I’ve now been on Abiraterone plus prednisolone for 2 months (2 cycles). Prior to going on the tablets my PSA was tripling within a month and going over 100, then 240. After 1 cycle, the PSA was slightly down compared with the reading taken the previous month, but it had probably peaked at a much higher level.  During the first cycle I also had a few blasts of RT to the top of the neck as insurance against a few hot spots.

At end of the second cycle (which was yesterday), my PSA had fallen 20% (which apparently is better than normal/expected). My body seems to be coping well, so some relatively good news.

Other good news: less pain.. During the 5 weeks on the tablets I had various aches and pains, which seemed like muscle aches etc. Walking was difficult after 20 minutes as leg muscles seemed to become painfully stiff. I would max out on co-codramol ((30/50) on most days and would even add a few ibuprofen through the day. Resting and hot baths also seemed to help.

But during the second cycle, the muscle pain eased considerably and I enjoyed longer and longer periods without any pain or painkillers.  And some whole days last week I enjoyed no pain and no painkillers.

During the last 3 days, however, I’ve had pain in the rightside buttock (piriformis?) that has got worse. I walked slowly into the hospital yesterday for my usual clinic, with slight pain, but today can only hobble around with a crutch.  So that has got worse. During clinic yesterday I mentioned the buttock (and side) pain to the consultant and he thought it was probably muscle pain from the medication (probably prednisolone). He suggested stretching exercises and potassium rich foods.

So I’m doing that and I’m taking pain killers again and hobbling around.

If I didn’t have the pain in the buttock and could walk freely, I’d been jumping around, or at least down the allotment.

Muscle and joint pains are listed as possible side effects of the medication. It is strange that the aches and pains seem to be on world tour around my body and have ended (for now) deep in the buttock.

Anyone experienced anything like this?

Show Most Thanked Posts
User
Posted 08 Mar 2018 at 17:25

Hello Mickey and welcome to the site.

I'm so sorry that you are not getting benefit from your current treatment.

I do know that we have various men on here with bone mets who have had treatment and are still with us many years down the line.
Treatments for PC evolve all the time so hopefully, once your consultants decide the extent they will tailor the treatment to your needs.

I can understand the anxiety and sadness, especially the sadness. Life as you knew it will change, but what you get is your new normal.

It takes a while to get your head round it but I'm sure you will eventually. At the moment everything is up in the air. They'll be many members on here who will tell you that once a new treatment plan is in place you will feel more in control of your new life.

Hard as it is to focus on the good things at the moment, tell yourself that those good things will give you something to aim for

Best Wishes

Sandra

Edited by member 08 Mar 2018 at 17:27  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2018 at 17:35

I assume you have made a typing error and meant 2018 not 2017? But were you diagnosed in 2016 or 2017?

Some men are very unlucky and find that HT does not work at all while other men can live for years and years. Were you diagnosed with adenocarcinoma or another type; there are at least 27 types of prostate cancer, and some of the rarer ones do not respond to hormone treatment. If you are not sure, can you check your original diagnosis letter

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

User
Posted 12 Mar 2018 at 16:55

Many thanks Johsan (Sandra). I appreciate your kind words. Yes. I look forward to treatment starting again. Like most people, I guess, I hate waiting in limbo for the treatment to start. 

Many thanks to you too LynEyre. Yes, (apologies) I made a typo. I was diagnosed in late 2016 and the PSA numbers started going back up significantly from Sept 2017 and thru Jan 2018 and March 2018 (not 2017).

I didn’t know that there are so many different types of prostate cancer. I just thought there were two: aggressive and non-aggressive. I guess the good thing about differentiating so many types is that the treatment options can be personalised more accurately.

I am surprised that in only a couple of weeks aches and pains were felt around my back and ribs. Anyway, I’m hoping that good use of painkillers will help control that.

 

User
Posted 18 May 2018 at 20:26

An update

I’ve now been on Abiraterone plus prednisolone for 2 months (2 cycles). Prior to going on the tablets my PSA was tripling within a month and going over 100, then 240. After 1 cycle, the PSA was slightly down compared with the reading taken the previous month, but it had probably peaked at a much higher level.  During the first cycle I also had a few blasts of RT to the top of the neck as insurance against a few hot spots.

At end of the second cycle (which was yesterday), my PSA had fallen 20% (which apparently is better than normal/expected). My body seems to be coping well, so some relatively good news.

Other good news: less pain.. During the 5 weeks on the tablets I had various aches and pains, which seemed like muscle aches etc. Walking was difficult after 20 minutes as leg muscles seemed to become painfully stiff. I would max out on co-codramol ((30/50) on most days and would even add a few ibuprofen through the day. Resting and hot baths also seemed to help.

But during the second cycle, the muscle pain eased considerably and I enjoyed longer and longer periods without any pain or painkillers.  And some whole days last week I enjoyed no pain and no painkillers.

During the last 3 days, however, I’ve had pain in the rightside buttock (piriformis?) that has got worse. I walked slowly into the hospital yesterday for my usual clinic, with slight pain, but today can only hobble around with a crutch.  So that has got worse. During clinic yesterday I mentioned the buttock (and side) pain to the consultant and he thought it was probably muscle pain from the medication (probably prednisolone). He suggested stretching exercises and potassium rich foods.

So I’m doing that and I’m taking pain killers again and hobbling around.

If I didn’t have the pain in the buttock and could walk freely, I’d been jumping around, or at least down the allotment.

Muscle and joint pains are listed as possible side effects of the medication. It is strange that the aches and pains seem to be on world tour around my body and have ended (for now) deep in the buttock.

Anyone experienced anything like this?

 
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