Blood cancer and bipolar

Hi Guys

I am new to the forum. I was diagnosed with myeloma in Oct 23 and started treatment in Dec 23. I have also had chemo and a stem cell transplant. I have started maintenance treatment in Dec 24. The big issue I have is that I am also biopolar. The steroids in particular affected my bipolar medication leading me into a manic state. I have been in the subsequent depressed state since March 24, which has made the ongoing treatment even tougher. The constant anxiety of the myeloma is making it difficult for me to get out of this horrible depression and I am finding it all pretty exhausting and hopeless. I have good friends and family around me but even that doesn’t seem enough at times. Is anyone else struggling with this and do you have any advice, I would be so grateful.

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Oh @Muskyj I am so glad that you have found us, it sounds as if are going through a really, really tough time.
I cannot help you but I hope someone will be able to.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Do all your medical people know about the adverse effects of your medications on you?
You are taking a brilliant step by asking for help, it must be so difficult for you.
You and your body have been through so much medically, emotionally, physically, psychologically and practically in just over a year, it must take it’s toll, be ever so kind to yourself.
Please do keep posting as I look forward to hearing more about you, good friends and family are priceless.

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Hello there @Muskyj, welcome to the forum. I’m so glad you found it here! I really empathise with what you’ve shared and wanted to say I’m sorry to read of the health worries that you’re managing.

Although I was diagnosed with a different blood cancer to myeloma, Polycythaemia vera (PV), and live with PTSD rather than bipolar, so much of what you wrote is familiar to me. It’s a lot to hold in mind, isn’t it?! Here’s the Blood Cancer UK information about myeloma: Myeloma | Blood Cancer UK

Something that reassured me at first after diagnosis was that of course I would feel more anxious and depressed, it’s horrible to find out you have cancer. All those thoughts about what was in my body, how it might progress, grim doomy stuff went around my head. What helped a bit was to try giving myself a break from that sort of spiralling doom-laden thinking and to actively expect to feel rubbish.

If I may be so bold, I’d say it’s really strong of you to share how you feel here. You are dealing with quite a health double-whammy… It’s not easy to open up about these sorts of worries as our loved ones and specialists can find it so hard to understand or know what to say.

Something else that helps me is to keep active in whatever way I have the energy for. I love hiking and still get out into the hills when I can, but I also now do yoga at home to keep me moving at more fatigued times. This time of year can be so dark too that it can help to get morning daylight into our eyes to keep our circadian rhythms in sync with daytime/nighttime and that can boost our energy. Just a couple of ideas—believe me, I know how even getting out of bed can seem insurmountable sometimes.

Would you want to do seek therapy if it’s accessible to you? Personally I love having therapy and am glad it’s kept me feeling some hope for tolerating my own double-whammy health stuff. I believe cancer organisations like Macmillan offer therapy, and you can always call the lovely specialist nurses here for ideas and support on 0808 2080 888.

If you’re in the UK maybe have a look around BACP and UKCP for therapists if that’s something of interest. I’d say ask to be referred for therapy by your GP but you’ll likely only be offered 6 sessions of CBT, if at all.

Please have a look around the forum. You’ll find others here living with myeloma and other blood cancers who are truly inspiring. It gives me hope, getting to know others here, that my own experiences can be tolerable and maybe it might for you too @Muskyj.

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Hi @Muskyj it’s me again.
I agree with @Duncan who has responded far more eloquently than I could.
I am a great believer in fresh air and appropriate exercise,
I am a walker, a brilliant occupation if you are nosey as I am and a Pilates girl.
It was really difficult for me to ask for help and admit that I needed talking therapy, but it really helped me.
You now have your forum family around you and the Blood Cancer UK support line on 0808 2080 888 so please do use us

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Hi @Muskyj

Thank you so much for taking the time to post and a warm welcome to our community. I’m pleased you’ve reached out here and that you’ve already received some support.

As @Duncan says, it really sounds like a health double-whammy. I’m so very sorry to read about your experience and how the medication is affecting your bipolar. It is hard enough to manage your manic states and depressed states without the myeloma treatment and anxiety on top and I can only imagine what you’re feeling. I’m not sure if this may have some helpful info but we do have a story by Becky on our website who also has bipolar and a different type of blood cancer: Living with mental health conditions and blood cancer | Blood Cancer UK

Have you spoken with your psychiatric team or GP about managing the affects on your medication? Therapy has already been mentioned, but I wondered if they might be able to help with anything specific to your situation that could help. Is there anything beyond medication that has helped with the different states in the past? I wonder also if you have spoken to your haematology team and whether there is any input from their side?

No wonder you feel exhausted with this. I wondered also if you might find it helpful to speak with a member of our Support Team? We could book you in for a scheduled call to talk things through with one of our Support Services Nurses? Please don’t hesitate to call us on 0808 2080 888 or you can email us on support@bloodcancer.org.uk if you’d find that helpful at all.

There are other support lines that may be helpful too. Samaritans are available 24/7 on 116123, so there is always someone there to talk to if you can’t sleep at night from either bipolar symptoms or anxiety.

We are of course also here on the forum, so do keep posting if you find it helpful.

Take good care of yourself,

Kind regards,
Ali

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Dear @Muskyj
Welcome to our Forum and I can see that you have got great support here already.
Your steroid experience is really challenging, these manic and depressive states can happen without a bi-polar diagnosis so it must be really distressing for you. I am so sorry that you are going through this.
May I ask whether you had talked to your Haematology Team about the impact the steroids are having on your mental health? If not I would recommend strongly that you ask for their support around this. Have you been taking Dexamethasone or Prednisolone during your treatments?
We would be very happy to support you @Muskyj, as @Ali_BloodCancerUK mentioned, we are only a phone call away. We can perhaps find some local services to support you if that would be helpful?
I am really glad to hear that you have good friends and family but I can recognise that this is a really tough time for you.
Take good care
Gemma

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Hello @Muskyj, I thought I’d reply as I have myeloma, too, and have suffered a lot psychologically as a result. Well, as a result of myeloma on top of other issues such as depression and anxiety. Dex drove me bananas. I was hugely emotional and manic. I told my team, and they reduced the dose hugely, which was a great help. I am no longer on dex, so feel great relief there. It seems your first step is to stabilise your mood and to get some solid ground back under your feet. Can you ask to get off the steroids? if they’re affecting your bioloar meds then it’s not going to improve until the drugs aren’t interacting.

I’d also say that for me, doing all the basics like exercising, sleeping, and eating well went out the window. i was too unhappy to muster the energy or focus to do those things. I am doing them now, now that I am more stable. So get some stability of mood and energy and then try those things. Also, I tend to get very unhappy when I feel I’m not doing well enough ie I’m too miserable and tired, so I think I’m useless and then get more miserable As a counsellor said to me: you are not having a good time, you are struggling, you are sad, you are distressed…but despite all that you’re still turning up for treatment, still trudging into the hospital, still trying to communicate your issues and concerns…despite how crap things are you are doing it. You don’t want to, but you are. This is not failure. This is success.

And I took that to heart. Things are hard, but you are doing it and doing your best, so don’t get into a downward spiral of thinking that you’re not doing well. When things feel at the worst, in a way, you are performing your best, because you’re still here and still able to type onto a forum and say can anyone help me out? This matters.

I have no advice other than get off the drugs which are making you unstable, get some solid ground under you (emotionally), find a counsellor ( very helpful for me) and/or find some myeloma peers (try the Myeloma UK forum or support group) and take it from me that you’re doing well even if you feel like you’re at rock bottom.
Then go for a walk/gym/eat a salad/sleep like a baby and all those fundamentals. But don’t feel bad for not doing those things sometimes you aren’t able to.
Good luck
David

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Hi @Muskyj
I too have myeloma for 8 years
I have depression and anxiety no treatment as I hid it well until diagnosed with myeloma. After initial treatment and then a transplant I found myself in a place I didn’t recognise and asked my consultant for help. That’s the biggest step I made
She referred me to a clinical psychologist and I have PTSD from a life changing event and feeling like I had almost died through transplant.

Have you told your team how you are struggling on steroids as they can look at dosage etc
Have you asked for help when you feel out of control

Along with counselling I was referred to our local hospice who were brilliant at helping me get back on track with physio and alternative treatments
I also met there a mindfullness practitioner who took me under her wing one to one.
I still have monthly mindfullness sessions via zoom.

It’s taken 5 years to get to a place where I can use mindful tools to get through anxiety attacks that I still get.
When you get a cancer diagnosis it’s like a bereavement. I grieved my loss then moved forward living with my myeloma

Firstly though if I was you I would be talking to my team about how steroids are making me feel and go from there
Good luck

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Hi @davidwindle and @Muskyj, how are you doing @Muskyj ?
Please do check with your medical teams before changing any medications or adding any changes to your diet.
Yes, @2DB and @davidwindle I also found talking therapy really helped me and I agree @2DB there are so many losses involved in a diagnosis.
Yes, @davidwindle just reaching out or turning up is such a positive step, especially when you feel at rock bottom, the only way is up, but it is so, so hard.
Be very kind to yourselves

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