Minor scare

For the past couple of weeks, I have been feeling unbelievably tired, constantly, from when I wake up, throughout the day, until I go to bed at night.

Additionally, my myeloma middle-back pain seemed to be making its presence known more frequently. I hadn’t resorted to pain killers yet, but I was noticing it almost daily.

And finally, my appetite had diminished.

These three symptoms: tiredness, loss of appetite and middle back pain were what I experienced in the time BD (Before Diagnosis). I wasn’t overly anxious, just a tad concerned. When I was at clinic on 7 March, they did a serum-free light chain blood test. This is the test to see if the myeloma is active. They do this test very two months now. Up till now, it’s all been fine and I have been officially in remission. However, with these concerning symptoms and a probably life-time legacy now of anxiety about my health, I was quite keen to know the results of the test.

All my other blood tests are absolutely fine. So much so that Dr Jenny said I didn’t need to come to clinic for six weeks this time, so my next appointment isn’t until 18 April.

They take the blood at clinic, but have to send it away to be tested, so the results are not available for a couple of weeks. It can sometimes take a little longer before they are entered onto my computer file.

By all accounts, they should have been back at Nottingham last week, so I called Lynne, the transplant nurse on Friday to ask if they had the results. She said she would check and get back to me. I hadn’t heard back so I called again on Monday and left a message.

So, there I am on Tuesday, driving down south, when a call comes through. (My phone is on hands-free.) It’s Lynne. She tells me that the kappa:lambda ratio is 3.55. She didn’t offer and I didn’t ask what the actual kappa and lambda values were. I’m aware that the normal range goes up to around 1.5, so a ratio of 3.55 is well out of the normal range. I am slightly alarmed and ask if I should be worried.

As Lynne is basically a transplant nurse, rather than a myeloma specialist nurse, she is less familiar with what the light chain results mean, so she said, quite calmly, that she would ask one of the consultants and call me back.

Driving is great for letting the mind wander and you can imagine, as soon as I was off the phone, just knowing that the ratio was out of balance, my mind began running away with thoughts of having to face new treatment, and an even-more-than-previously-imagined shortened life. Scary!

I began to feel terribly sad that I had lost another possible stretch of remission. My safety nets were being cut away one by one. I would not be able to do things on my List for Living. I might not even get to go to Paris for lunch to celebrate my one year transplant anniversary. Actually, when I began to think about that, I decided that even if it wasn’t a celebration, as long as I was well enough to travel, I would go anyway – it might be the last/only thing from my list that I could do.

It was all looking quite dismal. I didn’t feel as though I was about to die, but I did wonder if maybe that’s how it had been for other people who have died from myeloma. Maybe they too felt okay beforehand. It isn’t always a gradual decline; if the disease is very aggressive, it can come on and take over very quickly and it might not necessarily respond to the next treatment. I didn’t go to pieces, but I did cry as I drove, not even imagining the worst, but just imagining the voice of doom in the awaited phone call.

While I was waiting, I called my friend Wendy, who was very calm and logical and reassured me, reminding me not to get ahead of myself, that I didn’t know the kappa and lambda values, which would be a lot more relevant than the ratio on its own.

About an hour or so later, Lynne called back. She’d spoken to Dr Jenny. There was nothing to worry about. There was nothing to worry about!!!

Although the ratio was out of normal range, it was because the kappa value was low. But the lambda value was within normal range. Neither value was elevated. So they were not concerned. There was no sign of active myeloma. Phew!!!

If they were not concerned, I decided that I didn’t need to be either. I will ask about the strange kappa:lambda ratio when I go to clinic on 18 April – out of curiosity more than anything else. At least this experience has taught me to ask for all the information before I jump to conclusions.

For those of you who do not have myeloma, you may not understand this constant raised anxiety that can so easily flare up at the least little cough, cold, slip, trip, infection or unusual blood results. I am not alone in reacting this way – it’s part of the “new normal” of living with myeloma.

Just to be clear about the light chain results, this is what they look like:

The numbers in brackets under each column heading show the normal range.
Date Kappa
(3.3 – 19.4)
(5.7 – 26.3)
(0.26 – 1.65)
07.03.13 1.63 5.79 3.55
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28 Responses to Minor scare

  1. Your blog entry describes so clearly how our minds can run away with us. Like you say any symptom is bound to set off this chain of thoughts when you have myeloma. I’m delighted that your results are not indicative of anything worrying. Try to be as gentle as you can with yourself whilst the pain and tiredness are around. I hope the abscess is healing well now. Take care xxx


  2. Catriona Rose Yule says:

    There was nothing to worry about!!! Hurray! You cant stop the worry though…How much of my life have I wasted with needless worry and I dont have a life threatening illness.


  3. Jet Black says:

    I never used to be much of a worrier. I’m not saying I NEVER worried unnecessarily, but I’m generally quite laid back about potential disaster, unless I’m depressed and then “everything’s wrong”. But it’s a whole other level these days.


  4. Tom says:

    Jet you I and many many more know its just not that easy to NOT worry, but we do a great job of trying.
    Love Tom Onwards and Upwards xxx


  5. As I’ve often said, when one does not have cancer….if we don’t feel good, we just don’t feel good. However, when my honey (hubby) has pains, or doesn’t feel good…..I begin to wonder, is it the MM? Is it his kidneys? Is it one of his meds? That’s my goal, to get to the point where I treat him like I treat myself….he just doesn’t feel good!! (Will let you know how that works out!!)


  6. Your life really is a roller coaster! Glad it was all OK in the end. XXX


  7. Terri J says:

    Caregivers & loved ones worry too. I am the mother of a 33 year old daughter who was diagnosed in Jan.2012. She did 4 rounds of chemo, had a stem cell transplant in August & is now on a chemo pill maintenance. Every time she gets a sniffle or her blood counts go low from the revilmid pill I worry. She is in remission but every time she has bloodwork I worry something is going to be wrong. Logically I know worrying does no good but it’s very hard to turn my brain off.


    • Jet Black says:

      Sounds like fairly typical mother behaviour to me, Terri… with the added bonus of myeloma. But yes, you’re right, I know in some ways it’s much harder on the people who love and care for us, as everything is so out of your control, even while you try so hard to protect your loved one. Worry plus impotence – a tough one to carry. Hope your daughter continues well.


  8. MakingSpace says:

    I’m glad it wasn’t bad news. Here’s hoping your energy increases too.


  9. Morag says:

    Phew! Glad it wasn’t bad news after all. Keep trucking!


  10. Sharpy Sharpster says:

    Hi Jet, from what I understand of your myeloma, you are Kappa dominant. The fact that lambda is now your dominant from your latest results is, I believe, a very good sign! Of course, treatment can suppress both, which is also what appears might have happened. Either way, it’s a win win! The wait for your nurse to ring you back must have been agonising – I can so identify with that! I feel like I’m walking to the gallows whenever I go into my consultant’s office for blood results! X.


  11. Stan Wagner says:

    I’m glad that all is well. I guess it’s normal to react in such a way when getting lab results. My mind is all over the place until the doctor tells me everything is fine. In fact, after my 1st cycle of treatment, the doctor said my FLC was normal. I didn’t understand it as the ratio was out of range.He explained why and said my Kappa is what he looks for.
    Keep it up and, go to Paris!


  12. Susan says:

    So what was the tiredness, aches and loss of appetite about?


  13. Glad to hear all is well, Jet!


  14. The entire population, walking the streets is blissful ignorance, must have occasions when their blood counts are out of balance (“not normal”) for one reason or another. It’s just they’re not being monitored so obsessively as we are, so no one notices. The amount of calcium/magnesium/potassium they make me take is ridiculous and I bet I’ve had fluctuating mineral levels all my life.

    So let’s hope your depressed kappas are just a reflection of some immune response, or, better still, a completely meaningless blip.

    But reasonable to feel scared – especially combined with the niggling symptoms we all have to put up with.


  15. I am so happy to hear your “minor scare” was nothing to worry about. You are so right about the constant anxiety that myeloma patients experience. Even when all is going well, the myeloma anxiety is lurking in the background…….our new normal. Sending good thoughts your way…..
    Carole Leigh


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