R223 - PSA 26 Doubled since February

[Janhpr]

My husband has had 3 treatments of R223, had to postpone 4th treatment because of flu.

On Monday had bloods taken in preparation of 4th treatment on 18th April 2024.

Blood results ALP 76, at started of R223 106, HB 92 down from 102, (has Proctitis and occasional bleed, calcium a little low, taken adcal twice a day, what is concerning is PSA 26, was 10.4 at start of R223 in December, told does flare with this treatment but once treatment stopped will come down, but is worrying, has little bone pain and quickly controlled with paracetamol.

Tinnitus has become a real issue, keeping my husband awake, I believe it might be stress related, seeing a Tinnitus specialist tomorrow, but understand no cure.

Another concern routine INR bloods done Tuesday INR 7, high, advised by INR nurse to stop Warfarin until Friday, further bloods on Friday hopefully down to lower reading. If had antibiotics may have gone as high as 4.6, but usually with regime of INR 2 - 3. On Warfarin as multi pulmonary embolism while having chemotherapy 2010.

We would be grateful of any thoughts or advice kind regards Jan & Tony

[GP24]

Ra223 usually does not lower the PSA value. That will rise while Ra223 works.

[Janhpr in reply to GP24]

thank you for your reply and explanation, reassuring

[Janhpr in reply to GP24]

Thank you GP24 for your previous reply, since 4th treatment Tony has felt very unwell, fatigue, bone pain in buttocks, mobility really deteriorated in this short period of time, waiting for recentnX Ray result, yesterday told by Radiologist result from last CT scan, progression in higher coccyx, Multi Disciplinary team decided to stop further R223, this is all very worrying would be grateful of any advice

[GP24 in reply to Janhpr]

Seems he has exhausted all treatment options. He should really try to keep mobile to avoid muscle loss and end up in bed.

What I can recommend is this clinical trial which is also offered in Britain: healthunlocked.com/advanced....

[Janhpr in reply to GP24]

Thanks again GP24, see this trial is at Christie Hospital Manchester so only 1.5 hours away. The NHS does not allow patients to contact providers directly. Tony has done trials before and been positive experience, but referral has to come from your Oncologist. Our local hospital presume because of funding only offers chemotherapy and our chap is not very willing to make a referral regarding trials or 2nd opinions. Have you got a email contact in the UK and then if the response is positive will approach the Oncologist for a referral

[GP24 in reply to Janhpr]

Mrs Cook is in charge of this trial at Christie. You could email her.

christie.nhs.uk/patients-an...

[Janhpr in reply to GP24]

Many thanks will contact her

[Janhpr in reply to GP24]

HI GP24, since your last reply Christie Hospital cannot offer anything. Hospice HomeCare are managing pain, now increased to Butec 20, stopped Oramorph as hallucinations and panic attacks now on Oxynorm 2.5 3/4 hourly, also is taking 4mg Dexamethasone for 2 weeks reducing to 2mg thereafter to help with pain, but also increase his energy and poor appetite. He is getting around on a walker , watching TV, especially football and cricket, loves music and singing, but frustrated not in control of his life and limited in what he can’t physically now do.

Oncologist has arranged for full body CT scan with contrast and also NM Bone whole body with a view single fraction radiotherapy. OT have provided toilet aids, over bed table gel cushion etc.

He has been on Warfarin since 2012 following multiple pulmonary embolisms while undergoing chemotherapy, he has rectal Proctitis since RT 2019, latterly bleeding ever time he goes to the toilet making him anemic. This week INR 5.7 Hb 66, GP alarm bells, referred to hospital, we both sat on a riser chair from 9pm until 2pm next day 17 hours, no beds, eventually given vitamin K infusion after persuasion at 2am. Saw consultant at 9.30am said INR 2.4 down to normal level, advised to restart Warfarin next day, Hb 71 still low, appointment next for blood transfusion which he’s had.

The GP wanted to change the anticoagulant drug but decided with the Hospice Consultant to stop anticoagulants all together, aware of risk but rectal bleeding and anaemia gives no QOL, which is the most important now and possible more time. Appointment on Monday for full bloods PSA ALP. Would be grateful of your reply or anyone else who reads this posting

[Janhpr in reply to Janhpr]

Forgot to say PSA 89

[GP24 in reply to Janhpr]

I am sorry to read this. Unfortunately there is nothing I can recommend now.

[God_Loves_Me]

I am NOT a Doctor. Here are my opinions, and I request that you discuss

with the doctor.

R223 will raise your PSA and It is not design to lower PSA. I understand that a PSA number is a way to track things.

Coordinate with MO, request multiple scans over six months, and track comparisons.

PSA will become unreliable numbers for the next couple of months..even one year

PSA is reporting dead cancer cells, too. That's the reason the number is not reliable anymore now.

[Janhpr in reply to God_Loves_Me]

Many thanks for your exclamation, do you think the R223 last treatment 19th April would be still recording the rise in PSA at last blood test 89

[God_Loves_Me in reply to Janhpr]

scan tells you more I would ask questions MO and also talk to triage line and get the confirmation.

How’s your side effect ?

[Janhpr in reply to God_Loves_Me]

Had scan 2 days ago waiting for report

[j-o-h-n]

Seeing Tinnitus specialist tomorrow, but understand no cure. Only way to beat it is by using your mind to ignore it..... DON'T THINK ABOUT IT!!! (Like thinking about your ex-spouse)....

Good Luck, Good Health and Good Humor.

j-o-h-n