Myeloma in the news!!

A new treatment for Myeloma was in the news recently, this one is going to be suitable for people with more advanced disease, where it has spread into the bones. Apparently this should help about 1,500 people a year.

New treatments for Myeloma are being made available all the time, which gives me great hope that mine will always be treatable.

This week is also Myeloma awareness week (16th to 21st June), to try and raise awareness of the symptoms, which can easily be missed. The symptoms include pain in the back or ribs, recurring infections and extreme fatigue. My diagnosis was made as a result of blood tests following a series of infections, and I was lucky that I was diagnosed early and my bones are absolutely fine.

The current regime of treatment for me consists of chemotherapy two days a week for 3 weeks, then a week off. This is supported by various pills to take as well. The chemo is actually a targeted type of antibody, so it doesn’t cause me any physical side effects as you might have expected. It only takes 10 minutes for the chemothrapy drug to be injected into a vein via a cannula. I go to the O’Connor Haematology Centre in Shrewsbury Hospital for treatment, and the nurses are experienced and lovely too.

The only issue I get is that the drug regime tends to reduce my haemoglobin levels (this is what carries oxygen round in the blood), and sometimes my platelets can be a bit low. I take a weekly injection to support my haemoglobin level, which is now at a normal level. In addition, the chemotherapy dose has been reduced from this week, so that my platelet levels won’t drop so much.

Interestingly, I went to our local Village Fair last Saturday, and realised one of the stallholders was wearing a Myeloma UK t-shirt. Well obviously I just had to go and talk to him. He moved into the village of Ash about 6 months ago, and he confirmed that he does indeed have Myeloma! His was diagnosed early like mine, from a general blood test that picked up something was wrong with his protein levels. He has also had a stem cell transplant, and is currently is remission.

Myeloma is supposed to be a relatively rare type of blood cancer, but there are three of us with it within a radius of about 5 miles, which is a bit unnerving! Statistics show that about 24,000 people a year are diagnosed in the UK, making up to around 15% of blood cancers, or around 2% overall. Myeloma is also knows as Multiple Myeloma, as it can affect the bones, kidneys, blood and immune system. Treatment slows it’s progress and treats the symptoms.

Many people have no apparent symptoms, and backacke or pain in the ribs are often dismissed as other things, so sometimes a broken bone is how the disease manifests itself, which is then quite late stage. So if any of you have persistent pain in the back or ribs, you must insist on your GP sending you for a blood test, to see if Myeloma could be causing it. Dn’t be fobbed off!

I am feeling really well, with plenty of energy. I go to the gym twice a week, and go for long walks with the dogs. So it is not stopping me from doing anything, apart from being advised not to fly because my immune system is slightly compromised, and I don’t want to pick up any infections. However, I don’t see the difference between going to the theatre, where there are thousands of people, and going on a short flight, where I can always wear a mask! I so want to go on a short city break somewhere……..

Pete and I recently took a few days holiday in Derbyshire, which was lovely. I found a nice Airbnb in Ashbourne, where we found a really good restaurant to eat at night!. We visited two lovely National Trust properties and went for two long walks in the hills. It was great and we really enjoyed ourselves.

We are also going to London next week for a few days to see Abba Voyage at the O2 Arena (got the Experience tickets which include food and drink beforehand). Then we will have a couple of days to explore London.

That’s about it for now, hope you found the information about Myeloma informative!