Treatment plans

Treatment plans

User

Posted 26 Sep 2018 at 00:25

Hi everyone,

We've just had my husband's treatment schedule for Abiraterone in the post. The letter reads the same as his Docetaxel chemotherapy letter, the only difference being the name of the drug in the space given for that detail is Abiraterone.

It states he will be having 21 cycles, I thought it would be given for as long as it is effective . Perhaps they have to give a number regardless .

I've been going through the site looking at others treatment plans and I'm wondering why Radium 225, PSA scans etc haven't been offered or discussed. We are in Medway and I have the treatment pathway document for prostate cancer but I feel like it's not including newish changes to treatment plans.

I asked in our appointment in May whether there would be any more chemotherapy as I was thinking he may be offered another round of docetaxel or cabazit axel instead but the onco said no. I didn't ask why, I wish I had.

In the last appointment in September the onco said that Abiraterone was the last of the conventional treatments he could give my husband and the next step would be a referral to the Marsden for trials. I'm wondering if this is a financial issue for our nhs trust prohibiting the use of these other drugs or whether my husband is unsuitable for any other treatment.

The nurse in the clinic dispensing the Abiraterone seemed surprised that my husband had stopped working and that the insurance company had paid a terminal claim. I don't know what to ask and how to ask it. I want to email the consultant but I'm not sure what to say, whatever I type comes across as paranoia!

Help!

User

Posted 26 Sep 2018 at 14:54

Ok the reason people get different treatment is down to the post code lottery AND some people make more noise, often after getting informed on sites like this! Demand answers to your questions and don't be palmed off!

So to answer your other points, I believe ABI is the next "trick in the box" for your husband's stage. It can be a miracle "cure" for some men and keep the PSA beast at bay for many years.

Re Radium 225 I think that's what you will be offered when (if?) ABI stops working.

If you can I would also suggest looking at some of the emerging radiotherapy treatments like Actinium which have been successfully trialled elsewhere and maybe available for trial here soon???

Stop worrying about the insurance and just be glad you took it out!!

Edited by member 26 Sep 2018 at 14:56 | Reason: Not specified

User

Posted 26 Sep 2018 at 23:07

It's usually Radium 223 rather than 225

Barry

User

Posted 02 Oct 2018 at 00:00

Gosh why was he still taking the movicol - I don't think you are supposed to have it for more than 2 weeks without supervision from a doctor!

The clinic appointment is probably a great idea. They tend to be much better than hospitals at sorting out pain relief, some offer cancer-safe massage, reflexology, etc and there may also be some much needed support for you there.

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

User

Posted 04 Oct 2018 at 00:25

I am so sorry that he is having to deal with so many blows - how soon can you get that meeting with the hospice clinic? I think you need someone to take a holistic view of everything that has been going on for him. And there may be some much needed support and advice for you.

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

User

Posted 08 Oct 2018 at 21:54

I think it is difficult sometimes to tell the difference between depression, low mood and sadness / grief. When I am working, my advice is that people who have a reason to be sad are not depressed and so anti-depressants are unlikely to solve the problem ... in your case, antidepressants won’t take away the cancer. However, people with depression can be completely floored by being diagnosed with a serious illness, in which case anti-depressants can stabilise the situation.

Macmillan have a couple of information leaflets about the impact of cancer diagnosis on mental health; you can probably download them from their website.

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

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User

Posted 26 Sep 2018 at 14:54

So to answer your other points, I believe ABI is the next "trick in the box" for your husband's stage. It can be a miracle "cure" for some men and keep the PSA beast at bay for many years.

Re Radium 225 I think that's what you will be offered when (if?) ABI stops working.

If you can I would also suggest looking at some of the emerging radiotherapy treatments like Actinium which have been successfully trialled elsewhere and maybe available for trial here soon???

Stop worrying about the insurance and just be glad you took it out!!

Edited by member 26 Sep 2018 at 14:56 | Reason: Not specified

User

Posted 26 Sep 2018 at 23:07

It's usually Radium 223 rather than 225

Barry

User

Posted 27 Sep 2018 at 01:30

Hi Kentish,
if you haven't already put in a claim, you perhaps need to talk to someone (the onco or palliative care team) about whether OH should put in a claim for PIP. It is technically payable when someone has 6 months to live but many doctors will sign the application much earlier. The DWP would review the application after 3 years of claiming.

As for treatments after abi, it might be that radium 223 isn't right for him because he only has a couple of bone mets - what was the outcome of the scans earlier this year to find out why he had so much rib pain?

You could ask for a PSMA scan to find out whether he is suitable for Lutetium 177 in the future but if he isn't likely to be able to go to Germany for the treatment then the PSMA scan is not going to be much help. Referral to the Marsden for any suitable trials is a good move I think.

Edited by member 27 Sep 2018 at 01:31 | Reason: Not specified

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

User

Posted 27 Sep 2018 at 07:24

Thanks Lynn,

He didn't have a scan in the summer just a blood test, the rise in psa was enough for onco to bring his appointment forward and change him from Bicalutimide to Abiraterone.

Oh had a scan at diagnosis, one which shows up the area of concern in red, there was a lot of red, most of his pelvis and most of the top of his left leg.

Then he had a soft tissue scan because his bowels have been awful with urgency and lack of control. Nothing on this scan.

He had a bone scan in May when psa started to rise again and this showed "no significant change"

After chemo I asked if there had been a reduction in mets and onco said that they were stable, so I think this means they didn't reduce but they didn't grow during chemo either.

Oh doesn't seem to be similar to the other guys here, he qualified for PIP on diagnosis because his prognosis was poor. There are days where he could travel and then there are periods , like in the summer, where he needs a stick to walk because of the pain in his leg/hip.

I meant Radium 223 (was a mistype) I'm going to call his specialist nurse and ask some questions. I just feel like I don't really know where we are in our journey, and I need to, so I can be prepared for what ever is next.

User

Posted 01 Oct 2018 at 23:34

I called the specialist urology cancer nurse today, who in turn referred me to the Oncology nurses in the day unit, who asked the consultant on duty and then my husband's onco who happened to be there, for advice and guidance regarding possible side effects of Abiraterone treatment.

Oh has had a rotten time relating to bowel problems ever since his biopsy. He's never regained his "regularity" and is constantly having periods where he's in and out of the loo 4 or 5 times in the morning before he feels like he has finished. This is leaving him exhausted, dehydrated, sore and miserable.

The specialist didnt think it would be related to the new treatment and suggested that oh take a quick trip down to the GP for a once over to rule out anything else. The GP thinks he may be taking too much Movicol!

If this is all it is, goodness I'll be relieved. Oh stopped taking the movicol yesterday anyway in the hope that he wouldn't have to go so many times today. No change as yet but it might take a couple of days to settle. After having horrible constipation when he was on codeine he's a bit afraid of getting bunged up again.

The palliative care team also rang me to see if oh would like to go to the hospice clinic for a review. I'm thinking this is a good idea so they can look at his drug /pain relief/laxative regime and help him manage it differently /better.

Anyone been to one of these type of clinics?

Edited by member 01 Oct 2018 at 23:36 | Reason: Not specified

User

Posted 02 Oct 2018 at 00:00

Gosh why was he still taking the movicol - I don't think you are supposed to have it for more than 2 weeks without supervision from a doctor!

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

User

Posted 02 Oct 2018 at 07:35

He's on the movicol long term because of the pain relief induced constipation. The continence team who saw him in july thought the lack of control, urgency and accidents were down to being severely constipated. One movicol satchel a day was not enough to combat this to be able to go every day so they said take 2.

Oh is a creature of habit and once he's been told to do something that's what he'll do until told otherwise! He's not really active enough (fatigue) to combat the constipation with exercise as well as a milder laxative.

I think we need more regular contact with the clinics so that they can adjust things more often, oh is a bit resistant as to be expected, about going to our local hospice for the clinics, it's a bit depressing, we've both had parents pass away from cancer and I think we're both trying to ignore our previous experiences of the hospice. (Which were wonderful but very sad).

Oh hated being constipated but hopefully we'll see a change today without having had the movicol yesterday.

User

Posted 02 Oct 2018 at 19:37

I've just come in from work and he tells me he didn't make it to the loo in time today and wet himself. He's absolutely mortified, then he tells me it happened last week too but he hoped it was a one off and didn't say anything!

He's off his food and is exhausted, he's having a really rubbish time at the moment :(

How long before you guys had an improvement when you started Abiraterone. Anyone in a similar place/stage

Oh hasn't had any surgeries or radiotherapy for pca. Symptoms on diagnosis last year were pain in hip and leg, acute rapid weightloss, very poor urine flow and fatigue. Other than gaining weight during chemotherapy his symptoms haven't changed but there are a few more, faecal urgency, nausea, and now the lack of urine control.

Anyone got anything to cheer me up?

His referral letter to the Marsden for trials refers to him as "fit", I don't know how to add emojis but if I did I would be using the hysterically crying/laughing one!

User

Posted 03 Oct 2018 at 23:18

I rang the palliative care team and they suggested oh may have a urine infection, so off to the GP again.

Gp has given him antibiotics so hopefully he'll start feeling a bit better.

Oh had another accident today and is properly fed up.:(

User

Posted 04 Oct 2018 at 00:25

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

User

Posted 04 Oct 2018 at 06:51

Hi Lynn,

Palliative nurse said to finish the antibiotics and then to book in. It will be the first week of November. In the meantime, oh has a blood test booked for Monday to check his sodium and the following week is his first Abiraterone clinic review. Fingers crossed something has improved.xx

User

Posted 08 Oct 2018 at 21:44

Update:

Over the weekend oh passed some blood in his urine and a small clot. I rang the emergency chemo phone for advice and they put me through to our MEDOC team. Gp advised it was probably a side effect of the Abiraterone and unless oh had a temperature, passed a lot of blood or was generally more unwell, we shouldn't worry but we should mention it to the nurse at the next appointment.

Fortunately his next appointment was today for a check up on his sodium levels. They are still low and the advice is to add more salt to his diet and to reduce the cups of coffee.

While at the clinic for bloods, oh asked about his flow (the lack of it) and what could be done?

The nurse wasn't sure of the answers, oh's onco had a clinic on so she asked onco to see him, bonus!.

Result is, oh is booked in a fortnight for flow test etc to see if urology can determine what's reducing flow and what to do about it.

Possibly change from tamsulosin to a different drug or an operation to open the urethra.

Oh still struggling to stay "regular" trying different quantities of movicol to keep it moving.

We're back next week for Abiraterone review, onco said today; other than the low sodium, oh's bloods were acceptable.

Oh feeling a bit more positive regarding waterworks, but still quite despondent. I think his general state of health is grinding him down.

I've approached the subject of anti-depressants a couple of times with oh, neither of us have used these before, but he doesn't want to try them.

Have any of you given them a go? Have you found them useful or just another pill to add to the collection?

User

Posted 08 Oct 2018 at 21:54

Macmillan have a couple of information leaflets about the impact of cancer diagnosis on mental health; you can probably download them from their website.

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

User

Posted 08 Oct 2018 at 22:35

Thanks Lynn,

I think I've got those leaflets, they're probably with the others I have collected over the last year, read once and put away! I've taken to writing on my hands in the vain hope I will remember stuff! I'll try and find them tomorrow.

I understand what you mean, oh's natural disposition is similar to Eeyore...and he's done a great job of hiding it in front of the children and friends but I think he's struggling with his "public face" now.

I've been seeing a counsellor for several months and she described the situation as "living grief" we are both mourning the loss of our future together, in so many ways, whether we are doing it consciously or not. I feel very supported by my family/friends/work mates and I'm sad that oh doesn't have a big gang of people to lean on in the same way. He's spent a lot of the last 20 years working instead of socialising.

I think I just want to make him feel better any way I can, I hate seeing him so down and defeated. I thought the steroids might give him a lift like during chemo but they don't seem to be working like that this time :(

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