[susantrParticipant]

Hello Dawn

I was diagnosed in February 2016 with collapse of L3/4/5 and acute kidney injury. I was admitted as an emergency and commenced on aggressive hydration to flush my kidneys. My lambda light chains were 6900. I commenced on CTD. I had vertibroplasty a week after admission. I had 4 cycles of CTD. I slept really well, think it was the Thalidomide, but did gain 14lb in weight which really upset me. I had the moon face and large belly, I didn’t look like myself. I had cyclophosphamide priming in May last year, 3 weeks after finishing CTD, which was a full day in hospital. It was 2 weeks after this chemo that I started to lose my hair. It was distressing to see huge chunks coming out on a daily basis that my daughter shaved my hair off. That too was a shock seeing myself. I recall my husbands words, which were take a look in the mirror, then suck it up and carry on, so that is what I did. I cried once only. He had bought me a lovely wig, which I wore only a handful of times. I had a sct last June. I had a rough road, hence I had a long recovery (6 months), but the day 100 BM showed I was mrd-ve. I also lost all the weight I had gained with the Dex. Now 10 months later I am back at work and feel normal again. I have been randomised to take Revlamid as maintenance, but I have not commenced this yet, I like the drug free holiday too much! My hair has grown back thick and curly and looks quite funky. So, I know it is very tough with the treatments, but very soon this will all be behind you and you can look forward to being your old self again. It’s a real slog, but you will get there. Keep positive. God bless. I hope all works well for you x

[susantrParticipant]

Dear Morganchick

There are two types of light chain myeloma – kappa and lambda. Ask your consultant which one you have. Also, take note of the kappa/lambda ratio (this is important) as when this goes outside of the normal range this signifies active myeloma. Sometimes both light chains can be elevated, but the ratio remains normal, this can be due to chronic kidney disease and does not signify disease progression. It is very important that you drink plenty and I have been told to avoid Ibuprofen as this can interfere with kidney function. However I am not a doctor nor medically trained so do not know for certain if this is correct. I believe lambda light chains are slightly larger than kappa light chains but both types can get blocked in the filters within the kidneys which impairs kidney function. I know of several patients who were diagnosed with acute kidney injury due to myeloma rather than through bone pain. However, bone pain usually in the spine, pelvis, skull and long bones can signify myeloma. CRAB features (Calcium (elevated levels in the blood) Renal (impairment, elevated creatinine etc) Anaemia (low levels of haemoglobin) and Bones (lesions) are used to help diagnose and stage myeloma. With light chain myeloma diagnosis can be made by the presence of Bence Jones protein in the urine. There is usually no M-spike (monoclonal paraprotein) present in the serum with light chain disease. However you will probably come across the term M-spike and this is present in intact immunoglobulin disease eg IgG kappa, IgG lambda etc. the higher the paraprotein the more disease is on board. I hope this helps you a little bit more to understand some aspects of myeloma.

kind regards

[susantrParticipant]

Dear dbrr

NICE is the institute in the UK which gives approval for drugs to be used on the NHS, equally they also refuse drugs (usually due to cost). The only way in the UK to get drugs which have not been approved for NHS treatment is to go on a clinical trial. The USA and Europe seem to have slightly more ammunition to fight mm than the UK at present, I hope we can catch up. It’s frustrating when there are drugs out there that can help fight mm but are being denied (cost is the common denominator). I too read the forums on the myeloma beacon and have found a wealth of information. I have also participated in the forums. Maybe try again to login or maybe contact the administrators and explain the problems you are experiencing. They maybe able to help. One thing I have noticed about the beacon is that it does not always post your comment and they give no reason why. Good luck.

[susantrParticipant]

Hi Sabs

I have read of patients getting myeloma in their 20’s in an American forum. It would appear that patients are being diagnosed younger and younger as 15-20 years ago this was considered an older patients disease (65-75) , and I suspect that that is the reason for OS at that time being so poor.  Of course today there are the novel agents which were not available 10 years ago, which have improved patients survival.  I do know that in younger patients allogeneic (donor stem cell) transplants are offered and I believe this comes with a small chance of cure, but the risks of mortality are hugely increased when compared with autologous (own stem cell) transplants.  In addition the graft vs host disease which can occur after an allogeneic transplant can be life threatening. This is a bloody awful disease and the treatments are equally awful. I always say I am a statistic of one as no ones biology is the same and we all react differently to treatments.  My advice would be to research as much as you can regarding myeloma. It’s a complex and individual disease.

kind regards

 

[susantrParticipant]

Dear Mike

Thank you for your reply and kind words. I do believe in gaining as much knowledge about ones disease as possible, even though at times it is not comfortable reading. If I have helped one person with this information then I am happy. Another well know phenomenon is oligoclonal banding which commonly occurs after asct.  Fingers crossed that the articles are correct regarding longer PFS. I’ll take that all day long :0)

[susantrParticipant]

Hi Simone

I have just posted a new topic on secondary mgus which gives my history of mm. I was 51 when I was diagnosed and was told I had probably had it for at least 2 years. I went into renal failure, and 3 vertebra collapsed for which I had vertebaplasty. My back pain disappeared overnight with this procedure and it felt strong again. This disease is cruel in itself, but you are having to deal with so much more. I hope you have got good friends and family support, it makes all the difference. My advice would be to learn as much as you can about the disease, and pay no attention to the “old” articles on the Internet regarding survival. Remember you are an statistic of one. You’re an individual. There are so many treatments today for mm. Let’s hope and pray a cure can be found in our lifetime.

Sue x

[susantrParticipant]

Hi Bluelibran,

I’m sorry to hear that you are having to deal with multiple diagnoses. I can’t help regarding your query as I have just the myeloma to deal with, but I wanted you to know that I hope things turn out well for you and I will say a prayer for you. Keep strong and stay positive.

Sue

[susantrParticipant]

Hi Kitson

I too have lambda light chain myeloma. It is more troublesome from the kidney point of view. Lambda flc are a little bigger than kappa flc so can block the filters in the kidneys resulting in kidney damage. My flc were 6900 when I was diagnosed, my creatinine was 241 and I was in acute renal failure. Drink plenty at least 3 litres a day I have been advised. Hope this helps.

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