Newly diagnosed

Hi Nyc23 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a few active members at the moment so let’s look for them to pick up on your post. Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

As for your question about PIP…… it’s all about how your condition affects your daily living….. nothing to do with what that condition actually is. It took 14 years for my quality of life to be sufficiently effected for me to be able to claim PIP.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides benefits/financial guidance.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi Nyc, I'm 46 too and was diagnosed with multiple myeloma last week. I was hoping it was smouldering myeloma but it was not according to MRI. I don't feel any symptoms at all, even though it's active myeloma instead of smouldering. Have you talked to your doctor about fatigue and backache? 

Hi I was diagnosed with smouldering myeloma in September and I’m 42, I am like you tired a lot of the time and my hips and lower back are constantly aching, otherwise like you I have no symptoms and was only picked up by pure accident

Hi, thanks for your message. Do you take any pain relief that helps with your hips and lower back?  I find it difficult waiting for the next appointment to see if it's now not smouldering. 

How was yours picked up by accident? Thank goodness it was though

Hi, to be honest I’ve started taking turmeric as I’ve heard a lot of good things about it, and it has eased things otherwise if it’s really bad I take paracetamol! 
I ended up going for a load of tests because me liver function test came back as deranged so they wanted to see what was going on, which is when they found kappa light chains and the IgD paraprotein and was then referred to haematology, then it was my bone marrow biopsy that they found the result of smouldering myeloma. I completely agree with you that it’s the waiting to go and see if it’s developed, I was diagnosed in September so my next appointment is at the beginning of November so I can already feel myself getting anxious. How about you how do you deal with the waiting? 

Hi. Nyc23.    Kevin here aka. Vespa. I have MM.    post stem cell transplant 9 months   The journey may be tough but honestly it is worth it !        I am leading a good life.   M. M.  In remission.  Some hip problems to fix  from the damage.     The treatment for myeloma is painless but the symptoms can be demanding on your body   Fatigue being the most difficult one       Try to go with your body!   I used to nap 2-3 hours in the afternoon.  But I had just retired when diagnosed.      Recently I was prescribed Tramadol for pain.   I try not to take the opioids and get by with co codamol and paracetamol.       I am now very active again.    Gardening. Walk my dog.    Wash car drive etc.    Macmillan is a great source for support for you and your carers      Best wishes.  Kevin. 

Hi, I was diagnosed August 2023. I have had cancer twice before, breast and thyroid so, mentally, I was feeling give me a break!

I had a routine thyroid blood test and, unbeknown to me, they checked my protein levels. This was elevated, the light chains were high, so they did a bone marrow which was 35% myeloma cells. I am stage one asymptomatic Myeloma and generally feeling physically well but I know it’s just a matter of time.

My life goes between blood tests and virtual appts, I prefer not going in to the hospitals, if I can, as it causes me stress. I know some would rather face to face appts but, for me, travelling hours in a car, waiting in busy clinics/phlebotomy clinics doesn’t help my anxiety. When I have a test done I find myself checking my NHS app obsessively, thinking ‘is this the result that starts treatment’. I hate the way it’s become so all consuming, I try to push myself to focus on the nicer things in life, even if I’m having a day where I feel hopeless and tearful.

I am unsure about Turmeric, the one consultant seemed to dismiss it and someone I spoke to who was having Car-t was told to avoid it. I’m taking it and also drinking at least two litres of fluid a day as I’ve been advised that it helps. I’ve only got one kidney so renal damage is a risk because filtration of all the extra proteins, calcium etc.

That’s turned into a bit of a monologue. I’m sure there’s elements of it people can identify with, I know it does for me when I read other people’s stories. 

I only went on the turmeric as I saw it in a YouTube video that myeloma uk had done to say that it may benefit. I have no idea what my first appointment is going to look like if I’m honest whether I wait for bloods there and get results same day or if I go back for results or what?! I’m also always second guessing myself as to whether to go to things like weddings and public events in case I become ill? What’s everyone else’s experience been regards to going out to weddings and large group things like training? 

If you feel well enough I believe you should try to carry on fairly normally, if nothing else, it’s something to focus on other than Myeloma. I’ve given up strenuous exercise but I still keep active, attend family events and go on little holidays. You can cancel if you feel unwell, people will always understand.

Just to add, blood results usually take a while to get back, the light chains can take a few weeks. First visit would probably be introductions and planning care. 

When I was diagnosed it was a blood test o had been asking for this for almost 3 months eventually dr got one for me next day told to go to hosp I had severe back pain bone marrow taken myloma was at 92% said it was one of the highest result was high risk I am +93 days post transplant but I still have to get more cycles of chemo 

• I take oxygen codene for back pain