Hi,
I’ve been recently diagnosed. I’m 36 years-old and scared. Anyone else diagnosed this young? How has it been for you? I am waiting for labs to get back and bone marrow testing before I know if I’m low, mid, or high risk.
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Hi @mcarranza welcome and I am so glad that you have found us and I hope someone with Monoclonal gammopathy of unknown significance (MGUS) will respond to you.
Unfortunately conditions know no age boundaries.
I think it is very natural to feel scared of the unknown, with a weird name.
In fact you will probably find many of us with different blood cancers feel very scared at diagnosis and are in shock, I was for a long time.
The positive side is that you are now part of our forum family so not alone.
I find that I can say how it really is for me on our forum.
Waiting for test results can feel never ending.
Please do keep posting as I look forward to hearing more about you.
Be very kind to yourself.
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Hi @mcarranza, sorry to hear your news, i was diagnosed start of last year with Monoclonal gammopathy of unknown significance (MGUS), i was 42, so not to far apart in age. My head was spinning at the start, and i really struggled, basically drowned my sorrows until i got my head round it.
I then underwent all the tests your going through/about to go through, and it was a testing time, seemed to forever be stuck in limbo. In May/June last year i was told i had Multiple Myeloma, which was smouldering/inactive (struggled with that and getting my head round i didn’t need immediate treatment. Fast Forward a year and its been regular bloods every 3mths, and im currently waiting on latest results.
Best advice i can give is if you don’t understand, ask, don’t bottle things up and don’t be fobbed off by yur GP etc. Keep an results to compare then even if its just for yourself, mt results are on the up and not in a good way, but i remain ever optimistic that i remain on watch on wait for as long as possible.
Hope you remain with Monoclonal gammopathy of unknown significance (MGUS) for as long as possible.
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Yes, @RM952 some good advice there.
I have a blood test chart, for another blood cancer, since 2003, it is quite a length now !!!
Please keep us posted and look after yourself.
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I am so sorry about the new diagnosis for MM. Are you still working? How are you handling the new diagnosis?
I’ve since found out 2 days ago that my mom also has the same diagnosis, but she isn’t seeking treatment and has no idea where she stands on her diagnosis. I am working on making an appointment for her with my same doctor. I fear it is genetic and others in my family might have the same disorder.
I’m so scared all the time. It is so difficult to care about work or anything really. I feel like I’ve entered this never ending nightmare and praying to wake up.
Did you change your diet when you found out about Monoclonal gammopathy of unknown significance (MGUS)? If so, did you notice a difference? Were you referred to a clinic trial?
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Thank you for your note above. That is good news that your diagnosis has been since 2003. How are you feeling? Does your diagnosis complicate other aspects of your health? Has your doctor recommended any clinic trials? Did your diet change since the diagnosis? If so, did you notice a difference?
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Hello @mcarranza, welcome to the forum, although I’m guessing you’d never want to need a place like this. I’m sorry to read of your diagnosis and concerns, your fear comes across clearly. Perhaps I might offer some reassurance as someone also diagnosed when ‘young’, although it can feel like I’ve aged a decade since my own diagnosis with Polycythaemia vera (PV) last year!
If you haven’t already, maybe have a read of the Blood Cancer UK information about Monoclonal gammopathy of unknown significance (MGUS): MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
You’re already finding others on the forum who have lived with Monoclonal gammopathy of unknown significance (MGUS) and have kindly shared their experiences, so maybe have a further look around as you’re not alone with that diagnosis here.
Although I was diagnosed with a different blood disorder to you, much of living with our diagnoses is about ‘active monitoring’ AKA watching and waiting. As in, our treatments can be as simple as having regular blood tests to check what our blood cells are doing over time. Being monitored regularly means our specialists can keep on top of whether our blood cells start misbehaving, and then our treatments can be adapted.
I remember this early stage after diagnosis you’re in so well and it can feel so utterly terrifying and lonely. But you’ve taken such an amazing step to join this forum and now you’re not alone with that diagnosis. Something that helped me early on was reading decent research in places like this. Avoid googling if you can as a lot of the information online is aggregated from different non-medical sources and isn’t necessarily accurate or up to date. I’d say the same about Facebook groups and other social media.
Something that really helped take my mind off my diagnosis, in between appointments, and after tests when anxiety can be higher, is to occupy myself with diverting activities. You’ll know what stuff you enjoy usually, maybe some kind of physical activity, music, film and TV… I found hiking helped a lot, and I’ve since got back into yoga. Whatever you do, try to maintain your basic self-care and keep moving.
Hope this helps, please don’t feel alone with your diagnosis @mcarranza, and you’ll certainly find others here who know what you’re going through, young or otherwise!
Thank you @Duncan. It has been so paralyzing and so hard to just keep moving. I went to pilates on Friday and fought tears the entire time. It is so hard to stay present and fight with my mental health at the same time.
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Let it all out, I say. Express it, write it down, make art if that’s your thing, but don’t hold it in. It really can be better out than in, as the saying goes, and for me it does feel better to express it rather than hold it in and dwell.
I really feel for you @mcarranza, and I hope it comes to feel less overwhelming in time. Have you thought about seeking some therapy if it’s accessible where you are? I’m a big proponent of using all the clinically proven methods of dealing with all this, and think therapy is up there with physical activity for getting stuff out of my system.
If you’re near any beautiful parks or nature get out and breathe in the fresh air. In some countries nature therapy like this is prescribed, imagine that?!
As for doing Pilates at all, that’s so excellent. Any bit of movement and stretching will keep the blood flowing and of course can feel really great physically. Maybe it’ll even lift your mood in the long-term if you keep your practice going in a manageable way, following what your body and mind can deal with?
I am not big into Art per se, but I have been thinking of writing a lot. So maybe I will start there. I am not near any mountains right now, but I think that is a great idea. I do LOVE hiking and being in nature. Funny enough therapy starts next month for me. I do think it would be a good idea to get on antidepressants and anxiety meds to help in the meantime.
I want to give my body a fighting chance, I will continue to eat healthy and workout as I can. I want to control what I can and pray that it helps.
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Oh that’s so cool! Great minds… Really glad you’ve got therapy coming up. Writing it all down has really helped me personally so I hope it helps you too. It even encouraged me to join a writing group and now I have reams of my mithering written down!
As for antidepressants, if you do choose to take any then maybe don’t expect them to be a solution, and bear in mind their many potential side effects. They can take the edge off the worst of anxiety and depression but can take time to kick in, often a few weeks. I say this not as a doctor but as a qualified psychotherapist, but please don’t take my word for it as you’re the expert of your feelings and what you need right now. Run this change in medication past your haematologist, I’d say.
Personally, and I know cannabis isn’t legal in the UK, I use CBD oil in tincture form when my anxiety is high as it reduces inflammation around my body and slows my racing heart and other anxious symptoms, but without any druggy sensation. CBD is non-psychoactive so can’t make you stoned.
Keep up all this great self-care and in time I hope you’ll look back to now with some relief!
Hi @mcarranza I have another blood cancer, fatigue is my biggest symptom.
I have a weakened immune system and I am more prone to infections
I suppose it does affect every other condition I have, and I do have a few, I have to ensure they realise about my blood cancer. This also applies to dentistry, hairdressers, anything that might draw blood etc.
I always wear a Blood Cancer UK tee shirt in those situations
I have never discussed clinical trials.
I have not changed my diet, I suppose it is basically a meat or fish and 3 veg with a few treats.
However dietary advice has changed over the years and the ratio has changed to more veg and fish and less meat.
I have not noticed any difference.
I hope this helps.
However I am a Pilates girl now and I believe in fresh air and appropriate exercise, I am a great walker now.
I did have talking therapy after my diagnosis
Look after yourself
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I must say part of looking after yourself, is putting yourself first, and that can be very hard for anyone who has a family and work etc, brave tough and determined, I think the pilates and other relaxing meditation is a must, sometimes in life we sit back and do for others all the time, and we come last, but putting oneself first is very rewarding indeed, and coming onto this site, just to talk is a must, Good luck everyone
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