I was on hydroxycarbamide and doing well but had to stop due to side effects. I’ve been on alpha-interferon now since late February with a dose increasing in steps. Currently on 90 mg every ten days. A couple of weeks ago I noticed the odd spell of feeling low at points when I wasn’t busy. They passed fairly quickly. Last Friday it settled as mild depression. I’m still able to carry on but everything is more of an effort. As this is clearly chemically induced, does one’s body acclimatise to it over time?
Dear @Lucky,
I am sure you are going to get some great support from people here with lived experience, which I know will be so valuable, but I really wanted to come and check you have spoken to your team about this.
Mood changes and depression can occur with interferon and these symptoms can rage in severity. I would really encourage you to chat to your team about this so they can offer the right advise and support.
We would be really happy to talk things through in more and you are very welcome to call us on 0808 2080 888.
Take good care,
Heidi J (Support Services Nurse)
Oh @Lucky your mood changes must be tough.
I am glad that @Heidi-J-BloodCancerUK has already responded to you and that you are going to be seeing someone at your meeting on Wednesday.
Personally, although I realise that this is a bit late, I find a diary always shows things up so clearly.
Please do let us know how you get on and be very kind to yourself
@Erica, no need to be concerned it was a helpful comment, not seen as a diagnosis. I have an appointment at the hospital on Wednesday so we will discuss it then.
Oh @Lucky, I’m really sorry to read of that depression. Nothing I can add to what dear @Heidi-J-BloodCancerUK and @Erica have shared, except to say that you noticing and naming those low feelings is a really good sign of self-care and something to be proud of.
Although I’m not a doctor, I am a psychotherapist and would say that sharing how we feel like you have can often be the biggest step to beginning to manage difficult stuff that can bubble up.
I remember after diagnosis you saying how lucky you felt and I happen to agree. Perhaps now, a year or so since diagnosis, it feels safer to approach deeper feelings about the big C?
For what it’s worth, it took me some time to acknowledge my own stuff after diagnosis, which happened to be a lot of anger about developing Polycythaemia vera (PV)—it’s not the first chronic illness I’ve been stuck with, and I was furious at my body. Still am at times!
If you haven’t sought any therapy, I’m obviously biased but it can be a great support at times of change like these, whatever the source of lower moods. For me it helps to process difficult feelings with someone I trust without dumping on loved ones.
If you take a break from alpha-interferon and those low moods lift then you can use your experiences as a case study of 1 as you’ll know what to expect should you start taking it again. Maybe it’ll influence you in choosing a different medicine, or go back to hydroxyurea.
Anyway, as usual I’ve gone on a bit! Thinking of you @Lucky, I hope your appointment went really well today.
@Duncan Thanks for your message. The depression has gone today but I’m due to take another dose tomorrow so I expect it will come back. Got to get up on stage tomorrow evening so I’ll leave it to tomorrow night before taking it.
Gosh, having more than one chromic illness would certainly be annoying to say the least!
The Haematologist was reassuring today and said it normally takes a couple of months to get used to the feeling of depression. It’s summer, we’ve got a holiday booked and a few other things to look forward to, so that should help. My blood tests are reasonably good so it is unlikely the dose will need to be increased anytime soon. Fingers crossed that the depression tails off over the next couple of months.
Yes, finding an alternative to avoid dumping everything on my wife is an excellent suggestion.
I doubt I’ll go back to hydroxyurea, the side effects were problematic and had their own risks. There are other treatment possibilities but I’d like to know there was something in reserve. If I can make alpha interferon work it would be pretty nearly ideal.
Still feeling lucky and genuinely think I am. Having relatives who have experienced/are experiencing rather more aggressive cancers means that I’m not particularly worried about the label ‘cancer’ in this context. As the consultant said, “If you’re going to get a cancer this is the one to get.”
Oh I’m sorry I missed your response till now @Lucky. I hope getting on stage went well, you’re braver than me!
Glad to read that your haematologist said you should get used to the feeling of depression, although as a psychotherapist I have to say that no one should have to tolerate feelings of depression lasting for a couple of months.
In fact, living with low moods beyond a fortnight would be symptoms enough to seek a diagnosis of clinical depression, so please don’t tolerate it for long at all. Medicine-induced depression is not something I would personally tolerate living with.
One of the chronic illnesses I live with is the tail-end of PTSD which can include depressive moods and heightened anxiety. Please don’t accept depression as a tolerable side effect of a medicine for a different illness. I speak from experience! Polycythaemia vera (PV) is enough of a hassle I’d say.
Anyway, the NHS typically offer a short bunch of CBT sessions but their waiting lists around the UK are notoriously long and slow. If you can, maybe access your own therapy via one of the counselling organisations like Mind, BACP or UKCP. Free therapy can be sought at Maggie’s cancer centres too.
Thinking of you @Lucky. Please don’t tolerate long-term depression.
I had to inject Interferon Alpha for about a year once a week I think that it was.One of the possible side effects was mood swings but nothing happened with me although I hated injecting it and would put it off as long as I could.I don’t know if it had any affect at all negative or positive as all the time I took it the T Cell Lymphoma progressed but maybe it could have metastasized, undergone Large Cell Transformation and progressed even quicker without it, very hard to say.
@Duncan, it did go well thanks and it’s great to have it over and done with. Glad to have been able to return a favour and help a small charity.
The depression takes a day or two to kick in after the injection and tails off over about five days. As I am on one injection every ten days I get about half my time feeling more or less OK. Fortunately we have some young relatives staying with us for the bank holiday weekend so there is little time to think let alone feel depressed. I’ve got a few minutes to myself to check e-mails while they run around before we go out.
You have my sympathy with the PTSD. I’ve seen plenty of it in other people. Grim.
I may well contact one of the organisations you suggest. Sharing it on this forum has helped.
I won’t let it continue long term. If it will tail off over a couple of months then I can put up with that.