what now failed R223

[Janhpr]

‘what now’ failed R223

My husband this week because of low Hb 83 had a blood transfusion + iron infusion. He has suffered ‘Proctitis’ rectal bleeding since having radiotherapy 2019 and although complaining to Oncologist, GP, Gastroenterologist had endoscopy (found Barrett’s disease and has difficulty in swallowing food ) Colonoscopy found no bowel cancer did not receive an appointment for treatment. Eventually in February 2023 pushed our GP to make a referral to the Colorectal team.

We received no appointment only letters saying long waiting list so I eventually rang bookings to say how urgent the appointment was as low Hb and daily rectal bleeding and they said couldn’t find the referral. I rang the GP who confirmed the referral had been made.

I have now made a Formal NHS Complaint and with the help of the senior partner at the GP practice got an appointment on the 20th June with a colorectal nurse who has prescribed rectal enema twice a day, can anyone who is having these enemas tell what to expect and their experience.

R223 been stopped after 4th treatment as progression in coccyx, also bone pain, decreased mobility, lack of appetite and extreme fatigue, The R223 consultant who we saw to review R223 said he could prescribe stilbestrol but usually only prescribed that to patients that had only 3 months to live, otherwise he could not offer anything different to our local hospital. PSA 23 down a little from last blood test but consultant said it would go up; referred us back to our local oncologist not a positive meeting.

Our local oncologist can only offer chemotherapy no other funding available but don’t know if my husband could cope with chemotherapy again, neutropenic, hospitalised twice and then admitted with multi pulmonary embolism, possibly from DVT and has suffered leg ulcers for a long time, but cleared now, on warfarin for life.

Asked local oncologist for an early appointment but hasn’t received the referral to him as yet. The amazing NHS, I call it call it the NHS DIY. I trained as a Nurse in 1962 worked all my working life in care, retiring at 71, I don’t recognise this NHS.

My husband is experiencing pelvic pain that he did not have before R223, taking 4 hourly paracetamol + codeine, been reluctant to take codeine as can aggravates the Proctitis but taking it with some effect with the pain.

Has anyone been referred to an Oncologist who they recommend on the NHS or privately at the Christie Hospital Manchester, we live in Shrewsbury UK and much easier to get there than going to London hospitals.

We have been married 52 years both reach 80 in January, this is so hard, would be grateful of any advice

Kind regards Jan Hooper

[PSAed]

I sincerely hope you and your husband get the help you need , it seems the NHS is starved of funds by the government. I can only imagine the level of stress you are experiencing, Take care.

[Janhpr in reply to PSAed]

many thanks for your reply

[Janhpr in reply to PSAed]

Many thanks for your reply, the NHS that we knew appears to be collapsing. NICE decides what treatment is funded on the NHS and who is eligible and even difficult to approach someone privately without a referral. My husband is my sole-mate, friend I don’t know what will do without him by my side

[Proflac]

Really sorry you are both having a really tough time. You can ask your GP to refer you to Christies for a second opinion on the cancer treatment on the NHS. This should not take more than a few weeks to arrange. If you want to go quicker and have the means then ask for a private referral for second opinion. This shouldn't be more than a few hundred pounds. You may be able to get this without GP referral if you call them. Look in the private care section of their website for their phone number. They will give you the options. Several oncologists are listed and some will do video consultation so you won't need to travel if that's a problem. Or they may just do the opinion based on the notes. Your local team will forward husband's records. Do you have a specialist oncology nurse assigned to you? They are often easier to get hold of and should be able to pull the records together for forwarding. Your GP may have these but in my experience they don't always have the hospital scan reports etc. I'm not sure what further treatments are an option for your husband who sounds very frail but if you want to explore all possible options then getting an opinion from a top place like Christies or the Royal Marsden is perhaps the way to go. You can then decide on the way forward on the basis of best possible advice. Good luck.

[Janhpr in reply to Proflac]

Many thanks for your reply and advice and wiil contact Christie’s and hopefully able to see one of their Oncologist privately will let you know how we get on

[j-o-h-n]

What a lovely couple caught in government's shitty involvement. I know this won't help but medical magic is so much better here in the U.S.

The issue here is letting in illegal immigrants into the U.S. who we support instead of people from friendly nations who can use our medical facilities. Our priorities are all fouled up. I will be surprised if I do not get negative feedback for this post. So hug and kiss each other 52 times. God Bless you both.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Janhpr]

Dear John thought I had replied already but seems not, but thank you for your posting. The NHS that we knew appears to be collapsing and it appears that in America if you have insurance you have your choices of treatment but if you can’t afford insurance then it’s difficult. Each day is difficult watching my husband dealing with the this disease, he gets frustrated with himself that he can’t do what he can’t do anymore, but he still has love of music, football and his humour like you, I don’t know what I will do without him.

[megamike]

I very much regret that I have no immediate relevant advice to give you from my experience except to say that here in New Zealand our NHS equivalent has all the same symptoms of inadequate resourcing despite the truly heroic efforts of our medical staff! May there be some way forward discovered that has the brightest outcome for you both! My very best wishes and hope for your future

[Janhpr in reply to megamike]

Thanks Megamike for your reply what is the standard treatment for advanced PC with widespread bone mets in NZ and what more can you get privately and are there any trials. I was in touch by email with Michael Hofman in Australia a pioneer of Lutetium 177 and his comment after Tony had the 6th treatment with good results but within and 4 months PSA started from 1 to 4. His experience was having more Lu would only gave 50% of the period of remission had before and his quote was you have to consider the travel time going for treatment and the financial toxicity so that’s why we opted for R223.