Hi
I’ve been on 10mg Lenalidomide for a couple of years now but with 75mg Dispersible Asprin as blood1 thinner.
My hair is thicker and faster growing than before my SCT!
I use a chocolate that is 90% cocoa, not tasty but seems to keep my neutrophils level up. Cannot get it in supermarkets so have to resort to Amazon.
Hi I am also the wife of a husband with MM and married for over 40 years and was just retired when myeloma hit!
I can totally agree with all you have both said jusT that I’ve never been bold enuf to say it.
My husband buried his head in the sand from day 1 and left me to navigate us around a cancer we had never heard of before- he went blindly into a stem cell transplant in just the same manner – which while I never underestimated it left me sitting on the sidelines wondering if I could cope with much more.
I agree there is a genuine need as a partner to step away at times and take a bit of time out. I’ve joined some clubs etc to have that space.
We are not selfish we are humans- I will tell everyone I’m a wife not a carer – but I care.
Thank you for being honest about how you feel – it’s made me feel better
Elaine
Hi
I’ve been on Lenalidomide 10mg, 3 weeks on, 1 week off, since my SCT nearly18 months ago. This is described as a maintenance dose
Working for me
Regards, John
Hi
I had my harvest of stem cells at Addenbrookes- then my SCT at Ipswich Hospital. I was in hospital 2 weeks then had to return as I had an infection.
I can’t say enough if and when you feel ready join a Myeloma Group. Cambridge isn’t my local group ( which I did try) but the people I’ve met there are inspiring- they holiday etc and showed me it was possible to live a life still.
We are all different in our approach to our diagnosis but I feel knowledge about what’s out there is necessary and the best people to show us how to go forward are the people living with myeloma
Good luck as you move forward and best wishes
Hi both.
I was diagnosed two years ago, following sharp chest pains when lifting a heavy laundry basket at home. The ambulance crew were mystified as their tests showed nothing and the pain moved to my back whilst they were here. As part of my medical history, I mentioned my Mother had an Aortic E mbolism, so I had a whole body scan, which uncovered my Myelomae.
My initial reacton was to bury my head in the sand. I ignored what the Docors said and pretty much left my wife to deal with it.Part of climbing out of ths hole was when my Wife found the Cambridge Myeloma Group, which I fully recommend you join! there I hae have met people with Myeloma who were happy to share their knowledge and their Myeloma journey.
My reaction was pretty awful, though much better now. Stress and shock played their part, but really I needed tp “Man up” and research my situation> In my case, following the SCT, my life pretty much returned fo normal (whatever that is!) with occasional bouts of exhaustion.
As said above, you will get through the treatment.
Good luck
I was diagnosed just over two years ago and the main thing I have learnt is that no two cases are ever the same, Realistically I don’t think anyone can answer your questions,
Each case is very individual and side effects vary considerably!
Hi I had my SCT in October 23. I’ve just had my second covid vacinne. Both were given at hospital as I was told this was the only place who had the original vaccines. My booster in July is also booked at the hospital- it has never been mentioned that I had these at the GP surgery.
My myeloma was diagnosed one Saturday after I had had a pain in my chest went to A and E – given a CT scan and diagnosed with lesions and a broken rib and a highly likely diagnosis of myeloma- further tests and 5 days later I was started on induction treatment!
My wife and I had only booked a holiday to Italy 3 days previous to my trip to A and E. we’ve holidayed as much as we’ve been able in the UK this year and hopefully will have another go at travelling abroad when we can.
I was always of the opinion I didn’t want to read too much at the start about my condition- my wife was different and needed to read everything she could find- some of which really worried her. Someone told her “ incurable” had many meaning not all that “ the end was coming” it’s taken time for her to accept this. The stem cell wasn’t as bad as I had read it could be – please just take one day at a time it’s all we have no matter who we are
Hi Emily
Hope your tests turn out as you hope. I totally agree with Mulberry what will be will be.
My diagnosis was a fast one and a year on I’ve just had a SCT – if your diagnosis is Myeloma have a LOT of hope that diagnosis doesn’t mean everything is over! We all have to have hope or we wouldn’t do the treatment .
Please don’t look on Dr Goggle it’s frightening and out of date in many cases.
I too missed the meeting and would be interested in participating in this research. Could you please supply me with details?
Thank you
JB2514
Thanks for that