Recent update at oncology clinic

User

Posted 04 Dec 2015 at 07:01

Hello

My OH had his three monthly apt with oncologist today. Following the introduction of the Bicalutemide his PSA has risen from 140 to 450 which was a disappointment but not entirely unexpected as he has had health problems since his last visit. Constant urology problems have plagued him, having more frequent bleeds and water retention. He was hospitalised for 9 days recently since a visit to A&E following a collapse on two consecutive days was diagnosed with DVT - the blood clot in his leg and also in his lung. He came out of hospital last week and though we were told district nurses would visit to deal with warfarin and injections until the blood was stable this did not happen and he was told to go to the anti coag clinic daily. We tried to do this which was incredibly difficult and after 5 days we called out our GP as he had a water infection and needed antibiotics.

We are currently attending the oncologist, the urologist, the anti coag clinic/ general surgery Dept/. The oncologist stopped the Bicalutemide as it did not work in conjunction with the Prostap hormone injection and he has an appointment for a Bone scan and full body scan.

We are not at all sure what other treatment can be given, though the oncologist suggested maybe chemotherapy. Would this be to get rid of more cancer cells which the hormone treatments are not reaching. Also can anyone tell us if this is a good thing to have as he is at a really low ebb just now both physically and emotionally. We seem to be fighting a battle on all fronts and never know who to ask for help..

We would be very grateful if someone on this marvellous site could give us the benefit of their experience or knowledge.

Thank you

Polly

User

Posted 05 Dec 2015 at 12:24

Polly - I've copied what's below from another post I made on the forum. It is quite blunt in that it explores what options are available to me all the way up to my death. I hope this doesn't distress you. I do hope reading it might provide you with at least a few options to discuss with your Oncologist at your next meeting.

---------------

I'm sorry to hear this Glen. As you know I'm on the same path as Hubby, the main difference in our treatments is I haven't had any form of Chemo yet. I've prepared a list of questions for when the day arrives that the magic beans are no longer working for me. I list them below in case they may be of help to you. One thing you need to know in assessing the questions I will be asking my Onco is that from the point of diagnosis I stated that I prioritise quality of life over quantity of life. Best wishes. David.

Questions for when Enzalutamide ceases to be effective

Are there any other treatments left apart from chemo?

· Stilboestrol (oestrogen)?

· Abiraterone (I know the CDF ruling is one of Abiraterone or Enzalutamide, but not both. If you could prescribe it, would you do so? If so, we’d consider funding it ourselves).

· Radiotherapy?

· Radium 223 (I have the impression that this is the last throw of the dice after chemo has failed)?

· Immunotherapy trial (PROSPECT)/other trials ???

If Yes, discuss those treatments and put this paper to one side.

If No, continue.

1. Prostate cancer (PCa) kicked aside my first two defence lines (Zoladex and Bicalutamide) without breaking sweat. Enzalutamide held it up for n months. Is chemo likely to prove any more effective a defence?

2. PCa Chemo treatment takes seven months. Obviously it affects quality of life (QOL). The table below shows some measures of what quality of life means to me together with what I think (I may be wrong) will be adversely affected or not.

Measure of QOL Affected or not? Result
Enjoy a pint of real beer Affected Chemo messes with the sense of taste
Enjoy a glass of good wine Affected Ditto
Enjoy an excellent meal Affected Ditto
Take a plane journey Affected A plane journey is a sure fire way of picking up a respiratory disease
Have a workout in the gym Don’t know May be OK if care taken to sanitise equipment used
Walk the coastal path from Budleigh to Exmouth Not affected Should be OK on the ‘good’ days
Partake in a good conversation Not affected OK
Play a game of croquet Probably not affected Probably OK on the ‘good’ days provided I don’t play someone with a cold/flu

3. I haven’t learnt much about Chemo but I have the impression that assuming it works then once the 7 month course is over you get a couple (?) of months before the PSA takes off again. Then it’s time to start another course of Chemo, which may or may not work as effectively as last time. Eventually the Chemo will cease to work. After how many cycles typically?

4. How and when will we know whether the treatment is working?

5. How will we know when it stops working?

6. What would your advice to your husband be if he were in my position?

7. Typically, how long after a course of Chemo before the sense of taste returns?

8. If I turn down Chemo and opt for palliative care how long is it likely to be before I start to deteriorate and how long from there until death?

9. If I go the Chemo route, once it ceases to be effective, how long is it likely to be before I start to deteriorate and how long from there until death?

User

Posted 04 Dec 2015 at 16:26

Polly - I'm sorry to read this. Click on my profile and you'll see that like your OH, Bicalutamide was about as much use as a chocolate teapot for me as well.

I'm on Enzalutamide (I call it Enzo or the magic beans) and the side effects for me are quite tolerable, constipation which can be relieved with Ducolax, higher BP for which I have to take Amlodipine and a bit more in the way of hot flushes. Perhaps it's worth asking your Oncologist whether Enzo could be appropriate for your OH?

It's clear that what you need is good advice. This site is very useful but it doesn't replace a good medic. I've developed a relationship with one of the GPs in my local practice and I go to him with anything related to my prostate cancer. I trust his advice. Have you got a GP you trust in your local practice? My Oncologist is a wonderful woman. Again I trust her completely. Do you have the same faith in your OH's Oncologist, if so great, if not, is it worth asking for a second opinion?

I hope things improve for you both.

User

Posted 04 Dec 2015 at 20:51

Hi Polly

bicalutimide caused awful problems for my OH and had zero effect on his PSA but he was then put on Stillbestrill and he has been on it for two years so far and done quite well. We are in possession of a rising PSA (it's still low but OH has never had a high PSA) and we expect to be put on Enza or chemo following our visit to the Onco on Monday

Have you been offered advice from Macmillan or a specialist nurse? You can usually have a decent chat with them and they have more time to spare than the oncologist. It might be helpful. The other place to call is the nurses on this site, they are very knowledgable (obviously not about your specific case) but talking to someone might be a help just now.

When are you back at oncology? I'm wondering why no action has been taken, is it because your hubby is not well enough? I feel you haven't been cared for by your medics, you need support and information.

Lots of love

Allison xx

User

Posted 05 Dec 2015 at 11:39

Oh Polly, this has brought tears to my eyes. It shouldn't be like that for you. It should be a bit more like this:

I was diagnosed in July 2013. I first met my lovely Onco in August 2013. I explained that my priority was quality of life not quantity of life. My PSA was then monitored every 3 months and I had a consultation with her every 3 months until October 2014 when the PSA started rising. From that point my PSA was monitored every 4 weeks and I meet with my Onco every 8 weeks. Last time I saw her I told her that I felt cared for in every sense of the word care.

I also developed a relationship with a GP in our practice, he was a registrar at the time but has now joined the practice. I told him from our second meeting that I wanted to see him and only him for anything to do with my Prostate Cancer. He was happy with this. I trust his judgement. I know he will help me whatever the future brings.

If I were you I'd print out this post, my previous post and my profile and I'd take them to the GP in my practice I had most confidence in and liking for and I'd take it to my next meeting with my Oncologist. I'd ask them to read it all and then I'd say "This is how one person on the Prostate Cancer UK forum feels about his treatment, we'd like to feel the same as him, will you help us to feel that way?".

David

User

Posted 11 Dec 2015 at 21:51

Polly, I would want to talk very thoroughly and honestly with the nurse specialist. I hope s/he comes to the house where you can perhaps talk more informally and come to an agreement together about the best way forward. One of the things I would want to know is whether the onco changed his mind after you left - he may have made a pre-decision that chemo was next without knowing the full facts and now that he has had time to reflect on all the other health problems, maybe he wouldn't have recommended chemo after all?
The other thing I would want to understand is whether they are offering the chemo with the hope that other treatments will be more effective afterwards, or whether this really is just about slowing the cancer and buying a little extra time.
Third, I would ask the nurse to arrange for chemo to be delayed until the new year - this may be your husband's last Christmas and perhaps being happy, feeling reasonably well and creating happy memories for you and the family to hold on to in future years is the most important thing in the world.

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

User

Posted 12 Dec 2015 at 10:39

Polly - Excellent advice from Lyn that I think you should follow to the letter.

May I ask a few questions?

Did the Oncologist say whether he had considered Enzalutamide or Abiraterone or Stilboestrol?

If so, did he say why he had discounted those treatments in favour of Chemotherapy?

Did the Oncologist give you the results of the MRI and CT scans?

When is he going to see you again?

Show Most Thanked Posts

User

Posted 04 Dec 2015 at 16:26

Polly - I'm sorry to read this. Click on my profile and you'll see that like your OH, Bicalutamide was about as much use as a chocolate teapot for me as well.

I hope things improve for you both.

User

Posted 04 Dec 2015 at 20:51

Hi Polly

Lots of love

Allison xx

User

Posted 04 Dec 2015 at 21:01

Hello David and thank you for your reply. Until September 2015 we had seen the oncologist only once since diagnosis in Oct 2014. We saw only the urologist nurse three monthly but she has now left her post so my OH was referred back to oncology. We saw one of the doctors once and his registrar at the recent visit. So no we don't have a relationship with anyone. Hardly surprising that my OH is totally bewildered. No mention of any further hormone treatment was made, only that possibly chemotherapy was possible depending on the results of the Bone and full body scan. I will ask about the Enzolutamide. It is a despairing situation which at the moment I cannot see a way through. We meet the registrar next week for the results of the scans. Hope something proactive comes from it.

User

Posted 04 Dec 2015 at 21:17

Hello Alison and thank you for your post. Seems like there is so many choices of treatment out there. My husband was very well prior to the diagnosis and met the oncologist only once but as we declined the trial didn't see him again. He doesn't work from our hospital, he just has a weekly clinic there so don't know him at all which is unbelievable after 15 months of having treatment.

I haven't been in touch with the Macmillan nurses and will go down that route now. Our GP has been treating my OH for a water infection which seems more the norm. He just had 9 days in hospital after collapsing and going to A&E who have diagnosed DVT. His leg really swollen now and on warfarin to dispel the blood clots. PSA is now double the number at prostate diagnosis so is very worrying. We meet the oncologist next week after a Bone and full body scan. Dreading this as going to the unknown. I will post results later.

User

Posted 05 Dec 2015 at 11:39

Oh Polly, this has brought tears to my eyes. It shouldn't be like that for you. It should be a bit more like this:

David

User

Posted 05 Dec 2015 at 12:24

---------------

Questions for when Enzalutamide ceases to be effective

Are there any other treatments left apart from chemo?

· Stilboestrol (oestrogen)?

· Abiraterone (I know the CDF ruling is one of Abiraterone or Enzalutamide, but not both. If you could prescribe it, would you do so? If so, we’d consider funding it ourselves).

· Radiotherapy?

· Radium 223 (I have the impression that this is the last throw of the dice after chemo has failed)?

· Immunotherapy trial (PROSPECT)/other trials ???

If Yes, discuss those treatments and put this paper to one side.

If No, continue.

4. How and when will we know whether the treatment is working?

5. How will we know when it stops working?

6. What would your advice to your husband be if he were in my position?

7. Typically, how long after a course of Chemo before the sense of taste returns?

8. If I turn down Chemo and opt for palliative care how long is it likely to be before I start to deteriorate and how long from there until death?

9. If I go the Chemo route, once it ceases to be effective, how long is it likely to be before I start to deteriorate and how long from there until death?

User

Posted 08 Dec 2015 at 20:22

Hello David and thank you so much for taking the time to post. The information you gave is valuable and the questions set out are valid. The fact that we are on an unknown path without support we feel we can trust or understand is scary.

I have taken everything on board which we will take to our appointment with the oncologist clinic tomorrow. My OH has had an MRI and CT scan so we will have the results. We are hoping for another type of hormone treatment to be available to him. Is the Chemo treatment very effective and will it make him more unwell than he is already and from your post it seems that it may go on for quite some time.

Firstly though I aim to bring up the lack of support and insist that we are able to speak to someone who can give us help or reassurance when things are going wrong, basically like now. Why do I always feel like I am a nuisance when I have to call our GP or clinician which is most likely why we end up in A & E.

I will post tomorrow's results.

best regards

Polly

User

Posted 09 Dec 2015 at 08:51

Hi Polly

Your husband has seen or is seeing an oncologist, a urologist, the anti coag clinic/ general surgery Dept.

These are individual specialisms dealing with your husband's care and support. Overriding all of this is the hospital Multi-Disciplinary Team (MDT). The MDT should have an overriding insight and involvement into your husband's progress and care.

If you have time before you leave for the appointment today have a look at the link below which shows where the MDT fits in with your husband's care and who is on the team. Scroll down to MDT information. I would ask if the MDT is involved and if not, why not.

http://prostatecanceruk.org/prostate-information/your-medical-team

I hope this is useful for you both today.

Alan

Edited by member 09 Dec 2015 at 08:53 | Reason: Not specified

User

Posted 11 Dec 2015 at 21:16

Hi Alan,

Thank you for your post, it is something I did not know about and will take this up with a specialist nurse who called me today to arrange to visit us. This is following the visit with the oncologist. I told him we needed some help as my husband's health problems are becoming more varied and regular. I also asked the doctor if he was in contact with the other teams as he didn't know about the hospitalisation or the DVT and visits to the anti-coag clinic to monitor the warfarin, or the water retention/catheterisation. Very worrying. Obviously there appears to be no MDT. We found out from the visit that the hormone treatment, Bicalutamide did not work during the three months my OH was on it and has now been offered Chemotherapy, for 16 weeks = one treatment ever three weeks.

We have been given booklets and info regarding the chemo today but no one has spoken to us about how it will work and if it is worth having. I am worried that it will mean he is going to be even more ill than he already is. He is getting weaker because of the water infections and swollen leg due to the DVT. He is now quite depressed and wonders if the chemo is worth having as perhaps it will not extend his life by more than a few months. He knows the cancer is untreatable and this will be a treatment to only give him quality of life. What we don't know is how long his life expectation is as he didn't want to know.

The letter came today and the hospital want him to start the treatment on the 23rd December which is very sudden and gives us no time to make a calculated choice or change our Christmas plans with our famlly as my OH may be ill which would make our family very sad.

Has anyone else encountered this situation and what did others do.

Polly

User

Posted 11 Dec 2015 at 21:51

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

User

Posted 11 Dec 2015 at 21:54

On the other hand, if chemo starts on the 23rd he will probably feel quite well on Christmas Day / Boxing Day - hopefully, others with more experience will come along and correct me but I think the side effects tend to be worst in week 2.

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

User

Posted 11 Dec 2015 at 22:06

Thank you Lyn and you are right we do need more advice and I was going to postpone the treatment on Monday but may leave it until we have spoken to the specialist nurse on Tuesday.

Polly

User

Posted 12 Dec 2015 at 10:39

Polly - Excellent advice from Lyn that I think you should follow to the letter.

May I ask a few questions?

Did the Oncologist say whether he had considered Enzalutamide or Abiraterone or Stilboestrol?

If so, did he say why he had discounted those treatments in favour of Chemotherapy?

Did the Oncologist give you the results of the MRI and CT scans?

When is he going to see you again?

User

Posted 16 Dec 2015 at 22:05

Thank you so much for your posts and for the advice you have given.

The points you made Lyn were exactly what I needed as it has helped me understand the discussions we had with the oncologist.

I had asked about possible alternative hormone treatment (Enzalutemide)but the doctor said it had to be chemotherapy as following the bicalutamide failure the cancer cells are hormone resistant at this point. The doctor also believes the DVT could be associated with the hormone treatment. The chemotherapy would consist of one treatment every three weeks for approximately 10 treatments if possible and is offered whilst my OH is still reasonably well. The chance of success is around 40 - 55%.

I asked the doctor whether we have been allocated a team as we have felt completely unsupported and my OH is needing more help now. A specialist nurse has now been allocated to arrange a care package. The nurse came to see us yesterday and has already taken away some of the issues we have. I asked for the chemo treatment to be delayed for two weeks and it will now start in January which gives us time to stop the warfarin and be back on the injections for the time being. The nurse told us that the doctor wouldn't have suggested the chemotherapy if he did not think it was needed.

The bone scan shows some changes in his right hip and the abdomen shows similar issues as the previous scan but it doesn't look as if the tumour has reduced. The nurse did not have the images but just a report of the scans. The doctor was not specific in his findings. The doctor again told us that quality of life was more important than quantity and we hope that it means that my OH will benefit from the chemotherapy.

Thank you all very much for your posts we have been encouraged by all your suggestions.

Polly

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