[stevecooperParticipant]

Hi everyone

I haven’t actually been diagnosed with Multiple Myeloma YET but my mind is in absolute overdrive due to what’s going on right now and suppose this is the place where people will understand

Better start with my story.

A little over a year ago I had my appendix removed and spent the holiday season watching Robbie Williams sing us into the new year from my hospital bed keeled over in agony. What came from the random blood tests during this period was strange readings from the regular blood tests. A few weeks and multiple test later and I was sat with a haematologist to be told I had MGUS. It naturally took me a fair while to wrap my head around this. I started my 3 monthly checks and was told at the 1yr point I’d be moved to 6 monthly checks. Everything was fine and I was starting to accept MGUS as part of life until my last check. So my Paraprotein level shifted from 10, 10, 10 to 13 on the very last check. My light chains also shifted from an average of 30 to 70. I realise this isn’t a huge jump compared to the changes seen by many but it was more than enough for my heart to sink and the doctor to recommend for a bone marrow biopsy to be done. The biopsy was done around 2 weeks ago and showed a plasma cell ratio of 25%. I was invited in straight away for “The Chat” but this has left me feeling a bit lost and demoralised as everything is happening really fast. I’m off to have a full skeletal MRI in 2hrs and was told if I have evidence of damage then they will likely want to start treatment aggressively. At the very least I’m told I’ll be classed as having Smouldering Myeloma. The past few day’s every single little niggle has had me wondering if its my bones due to this test I’ll be leaving for in a minute.

My positives are that I have no sign of Kidney or Liver damage on my blood tests. My calcium levels are also normal. I also don’t have the markers for aggressive disease like 17p (I had to ask when given my biopsy results and the 2 minutes while she looked felt like hours).

Not so positive is that all this is happening and I’m 36 years old. I will be igA (Last level was 9.34 per g/L and aware it should be 0.8 – 2.8. Low white and red cell count. Low neutrophils and lymphocytes (Whatever they are). Also a total protein of 81.

I’m just looking for anything positive to cling onto. I have questions I haven’t asked yet like, what makes myeloma aggressive? Is it a natural change or is aggressive treatment to blame? What is a realistic survival statistic for someone my age etc. Is igA as treatable as the rest? I was told it was as treatable as igG but I’m a bit reluctant to accept it as the doctors always seem to be extremely happy and this makes me think they are trained to be nothing but positive but I want the facts. Doesn’t help that the doctor I had “The Chat” with got simple readings wrong when talking to me and I had to correct her. eg. Your plasma cell from biopsy was 35%. Immediately I reacted and said, “Wow, I was told 25% on the phone prior to this meeting”. She checked and I was right luckily.

I actually feel fine bar a little weak in the legs but nothing that effects me day to day.

Any advise or words of wisdom would be really appreciated. Sorry for harping on.

[greg777Participant]

Hi Steve,

Welcome to the forum although sorry for the reason you had to post. I hope things went well yesterday and you have a bit more information about your situation. There will no doubt be a lot to take in, so take your time, do your research, ask questions and try not to worry as best you can. I would advise sticking to well known myeloma websites for info – there is a lot of scary and out of date information on the internet.

As to your technical questions, I can’t really answer them as they are not questions I have asked myself. One thing I have learned is that the myeloma journey can be very unique to the individual. I don’t think there is a path you can necessarily predict.

In terms of something positive to cling on to, I was exactly your age when I was diagnosed. I’m three years in now (almost 40) and I feel well. There is nothing I can’t do now that I could do before myeloma came along. Also, I have no intention of popping my clogs any time soon and with treatments developing all the time, I think that is a realistic goal.

All the best,

Greg

[richiesheerinParticipant]

Hey Steve,

I too am 36 and was diagnosed in March of this year. I got the call saying I need to get the Cancer Center as they are suspicious of Myeloma. My story to this point was Completed half marathon Sep 2017, cross country running up until Nov 2017. Took December off. decided to go back to Gaelic football early Jan 2018 to help some of the younger guys out and hurt my hip in a sprint pre-season test. This pain went on a few weeks, wasnt getting better with physio. Sneezing and coughing starting really hurting, so on the physio’s recommendation I went to the doc to get check for a hernia in March. Then got the call, saying high numbers of paraproteins – get to the hospital.

In the space of 3 days I had more bloods, full skeletal, MRI and bone marrow biopsy. All my other markers came back normal bar the MRI and xray where it flagged the a Solitary plasmacytoma of bone. So was then sent for PET scan and tumor biopsy to confirm. Started 5 weeks Radiation which finished in June 2018.

Fast forward 3 months I was sent for more bloods and a follow up PET scan. PET scan revealed the tumor had shrunk and my Paraproteins had dropped from 58 to 15 although there was some uptake in my 5th left rib and behind my stomach so had a CT scan last week and I am waiting the results. Fingers crossed for nothing. Blood levels still good.

What I would say to you is increase your plant based foods in your diet – cutting out dairy, meat and obviously processed foods, (watch fork over knife on netflix) and try and alkaline your body, cancer cannot live in an alkaline body. Just do some searches on it. A great help to me was https://nutritionfacts.org/
Also I have been on high doses of Tumeric to help with inflammation and my immune system. There is a lady our age in my work who has Smoldering Myeloma with protein levels of 28, she is now on yearly checkups. Not sure if that help you as I dont know her other numbers.

Treatments are getting better and better all the time, get in control of your own body in terms of nutrition, our bodies are amazing bits of kit. Whilst the NHS do an amazing job, we can also help ourselves. Many cure stories out there.

Hope this is of some help…

[Author]

Posts