Long term effects of mustine chemo?

[Fluffycloudland77]

I might have spelt that wrongly, dh had it 32 years ago.

He just seems to be ill all the time. GP put him on erythomycin because he's asplenic, it's made him feel worse.

I don't know what to do anymore.

Can see you haven't had any responses and didn't want to leave this hanging, you sound very worried

Can you be more specific about what you mean by ill all the time? What sort of cancer has your DH survived? How old vaguely is he now?

We do know that cancer survivors often have a hard time and don't just bounce back to being completely healthy individuals but health professionals often expect them to (and they often want to, and/or feel they should be grateful for their life-saving treatment when actually they still feel quite crap). Also some people cope better with being asplenic than others.

I guess he had carmustine and a splenectomy for Hodkgins? Can the GP refer him to a late effects clinic at your nearest large cancer centre? Late effects nurses/clinics are much more available now and might be better placed to see if his symptoms could be related to his treatment.

That's it cad.

I hadn't heard of those nurses. The Drs seem irritated by him more than anything, they want to give him 3 vaccines in one go & don't seem to understand it brings out a small shingles type rash on his neck so he wants to split them.

TBH I feel very alone in trying to keep him healthy, he has type 2 diabetes and asthma now too. His hba1c is 6 so they know he's compliant.

TBH he only goes when he has a chest infection because of the way they are with him.

Are you sure we can ask to be referred to a cancer centre? I'm guessing the centre that treated him might have them. It was the QE in Birmingham so I'll google.

Looking it up a bit - there may be a late effects clinic at your local cancer centre if you are lucky but there may not be one.

If he is getting frequent chest infections it would be worth asking your GP to refer him to a respiratory physician as he may have lung damage from the carmustine and/or chest radiotherapy he received. He shouldn't just be having one course of antibiotics after another but proper lung function testing.

If part of the problem is he is tired/short of breath all the time then he should also be checked for cardiac problems, again related to carmustine and chest radiotherapy. This website is very helpful in listing potential issues:

www.cancer.net/survivorship/long-term-side-effects-cancer-treatment

How has he been diagnosed with asthma? If by GP then you should push for further testing by a respiratory physician due to the risk of lung damage from his chemo/radiotherapy - he may not have asthma at all.

Googling there is definitely supposed to be a late effects clinic at QEH Birmingham for patients treated for childhood cancers which I'm guessing your DH was? Sounds like he hasn't had any follow up at all and he should definitely be eligible.

Gp diagnosed the asthma, he has symbicourt and ventolin.

He did have radio on his chest. He also smoked from 14-40, then I came along and stopped him/gave him a reason to stop. he gets 1-2 chest infections a year.

He's reported cardiac arrhythmia & palpitations at his old doctors but they say that's normal. I've heard his heart beat irregularly. He has a much higher heart rate than I do.

He does feel excessively tired.

I'm a bit scared of asking for referrals, can a GP refuse?.

www.bch.nhs.uk/node/11583. I found this consultant.

I think the consultant you have found works at the Childrens Hospital and does late effects but only for under 16s.

What I suggest you do is print out the webpage I've found and write down a few bullet points you want to make to the GP and go together and ask:

We are very worried about DH's health. We have discovered that people who have survived Hodgkin's lymphoma are prone to lung and cardiac damage and nowadays would have regular monitoring from a late effects clinic which he has never had. We are very worried his asthma is really lung damage from his chest radiotherapy and carmustine - show print out - and cardiac arrhythmia is cardiac damage - show print out.

We would like him to have a referral to a respiratory physician and the late effects clinic at the Cancer Centre please.

I don't think any reasonable GP could refuse this request. If they do refuse you can ask them why, especially as the protocols for who should be referred to a late effects clinic are available online and show that your DH would nowadays have been referred to one at end of treatment.

I tell a lie, the consultant you've found might well see adults - although I suspect she sees only young adults ie 16-18s but the CV does make it clear there definitely is an Adult Late Effects Clinic at University Hospital Birmingham.

Which is exactly what you want your DH to be referred to

Thank you, no ones ever told us any of that before. I'll try and book the nice GP.

If they do refuse, find your inner tiger and refuse to leave. The absolute worst thing that can happen in GP is that someone makes a scene or causes them to run late

And given that you've given them the name of the clinic, you've helped them out enormously

I suspect no-one has told you because the GP doesn't actually no. Cancer survivorship is quite a new specialty and the GP probably has v few on their books and has been taught nothing about it. The clinics themselves are a very new invention.

If you really get nowhere come back here or PM me and I'll give you some tips.

Yes one of the other gp's said "you've done really well survive that" which gaurentees you'll get run over in the car park.

Next time he can come back with 'No actually survival is 95% in male 15-39 year olds but we get a number of late effects for which I need a referral to the late effects clinic'