This topic contains 14 replies, has 8 voices, and was last updated by 
Hello all.
I have not been diagnosed with myeloma, however it has been suggested and has been tested for.
Long story short, presented to the doctor with hives (over the phone) and they ran routine blood which showed a platelet level of 38! Many, many Tests, Failed medications And treatments later, they referred me to haematology, who ran a bunch of tests for myeloma, along with other things.
Now, the ones that have been consistently low, and getting lower with each test, are platelets, white blood cells, red blood cells, haemoglobin, lymphocytes and neutrophils.
I’ve also had a high IgA level and ESR. My albumin level is slowly getting lower and my calcium is getting higher! Lactic dehydrogenase is the higher end of normal.
I’m still waiting on the results of my protein electrophoresis and free light chains.
However my telephone appointment today with the haematology department, the doctor (not the one who ordered the tests) told me my levels are low but not too bad, and to just wait and see what happens now! She wants me to wait a month, have my full blood count repeated, then get my GP to re refer me to haematology! She asked if I was experiencing any bleeding or bruising and I said yes, both are quite severe, and she said oh ok, and that was it! When I asked about the IgA level, she said that’s not her job to look at those, and I would have to be referred to a immunologist for them to look at it instead.
Is the wait and see approach the norm and I’m just expecting too much? I would have thought they would be looking into it more, but they seem to be just fobbing me off!
Hi there, I am sorry that you find yourself in this situation unfortunately I feel it is often the case that things can take time. Do you know when your outstanding blood results will be ready? My Husband has myeloma and his specific myeloma bloods (paraprotein and light chains) normally take a week. From your post it sounds like the GP needs to re refer to haematolgy. If it was me I would be asking the GP if these results are ready, and should he now re refer you to the haematologist. Sounds like regardless you need to see or speak to them again to get a diagnosis. In my Husbands case he was back and for to the GP for over six months, and persistance is what eventually made the GP take things seriously. Having said that his bloods at that point only showed a slight anaemia and low white count but he had really deranged liver function which turned out to be not related to the myeloma. I am sure you will get sorted soon. This is only my opinion, the ask the Nurses on this site are really good for advise. Wishing you good luck xxx
hello confused and annoyed
unfortunately or fortunately my doctor diagnosed my myeloma then referred me to hospital. i then had bone marrow extraction and x rays which confirmed the doctors diagnosis, that is just the begining i have since been on watch and wait having blood tests 3monthly and occasional pet scans to check for bone leasons i have no major symptoms other than fatigue. the early diagnosis means you remain asymtamatic for a long while. you mustn’t let this creep into your head, trust your specialist and remember they are only at the end of the phone. i am due hospital appointment this thursday any change i will let you know. i have bloods at doctors week before appointment and it works well. i haven,t forget i have saved the best till last i have been on watch and wait almost 5 years due to early diagnosis. my paraproteins are stable around 35, and i have bence jones don’t understand that, to much knowledge is not always good.
stay safe and well and trust them that know.
Hi all, I am replying to this as I am also a newcomer.I was diagnosed with myeloma on 15th june. Would have started treatment straight away but it was delayed due to covid 19. However I was told that it didn’t really matter when treatment starts as there is no damage to bones. I have had my head in the sand but as I start chemo on Monday thought I my see if someone could enlighten me as to what I can expect. I will be in dexamethane, bortezomid,and thalidomide with a injection of chemo. Injection Monday and Thursday for 2 weeks then 2 weeks off. Repeat each month for 6 to 8 months then stem cell transplant. Interested in first few weeks like when you know the drugs have really kicked in. But first got a football match to go and watch then see if I can reach the bottom of a bottle of him when I get home.
Hi Worksopian and wonderment
Hopefully you’ll start feeling better rather than worse worksopian, although we get told of a long list of side effects, most of us only have one or two minor side effects,and a few have none at all. For me the most significant thing was that my life was taken over by hospital visits and travel to & from. The hospital teams are brilliant at sorting side effects quickly.
Wonderment, many people with myeloma do not start treatment instantly, some can be on ‘watch and wait’ for a long time, months or years. This is because it’s not a curable disease and unless the myeloma is causing damage to organs (is associated with high calcium, kidney damage, significant anaemia and/or bone damage) there is no evidence that immediate intervention is beneficial, and it can help drs to know how quickly a particular myeloma progresses. (This can vary enormously between patients)
This is a very stressful period, between myeloma being mentioned and actual diagnosis. I hope you have answers soon.
Me again! Is it normal to sleep so much at start of treatment? Hubby on Lenalidomide and Dexa, along with various other meds. He sleeps for at least 2 hours at least 3 times a day, shows no interest in doing anything really, and says he’s fine. Just started a week off Dexa.He was at least mowing some lawns, and taking an interest before all the meds started. I guess it’s overwhelming. Any advice? He won’t go for a walk.
It’s not uncommon to need a nap during the day during early treatment, although your husband’s does sound excessive, if he is managing to sleep at night. (I needed sleeping tablets to sleep for the first 6 months after diagnosis, without which I would have slept on and off all day). It’s worth mentioning this to his myeloma nurse, if in any doubt always mention odd changes.
I have always felt more tired towards the end of 28 day cycles, and most energetic at the end of my week off medication.
If you can persuade your husband to go for a walk I suspect it would be good for you both. Keeping physically active is definitely a good thing with myeloma.
Thanks Mulberry, yes, as far as I know, he sleeps at night too! He has a blood test due on Wednesday, and we speak to the lovely nurse on Thursday, so will discuss with her… We went to church this morning, and he was fine, then fell asleep before eating a good lunch. Then slept all afternoon, ate tea, made a brief trip to shut the gate, asleep again, and aside from taking a tablet. Is asleep again. It does seem very very excessive, he says he is fine!!!
So I’ve just had my blood test results from the 13th August (well I logged onto my online records and saw they had been submitted this evening!)
My IgG level is 22.44
My kappa is 45.9
My lambda is 33.7
Total protein level is 80
Platelet level is 45
WBC is 3.8
Haemoglobin 118
RBC 3.6
Esonophil and basophils 0.0
Not sure where to go from here now. GP hasn’t contacted me since mid August, I have a telephone appointment with haematology at the end of September, but other than that I’m just being left to it. My full blood count has dropped at every blood test I’ve had done, yet no one seems to be interested. The rate of bleeding and bruising is getting ridiculous now, but I just get told to wait and see what haematology says! Yet haematology say see what your GP says! Everyone seems to be shifting the problem on to someone else, meaning I get no where. To top it all off, I’m back to work in a preschool tomorrow for the first time in six months! This could be interesting considering the crippling fatigue and bone pain I have.
I guess I have to just wait and see what happens and hope not to keel over in the meantime!
Hello again all… Hubby is a bit more like himself during this week off the Dex, but is tending to constipation. I worry about this, because of his bowel resection, so he has had a Laxido this afternoon. Fingers crossed. Its been 2days..too long!
Eating well, cheerful most of the time, and having a nap when he wants to. We went for bloods this morning, and have a call from the nurse tomorrow. So the first week of the first cycle is done. X
Dolly dream, it’s good to hear your husband is better during his week off meds. I found I needed to stick to a regime of half sachet of laxido a night every day I’m taking lenalidomide, if I miss a dose it takes days to get rid of the constipation.
Thanks Mulberry, I think we’ll be doing the same! He says he’s been a bit… Memory loss…. But I think he has.. So another dose today to be sure.
He gets really annoyed when I ask him!
Onwards and upwards eh? X
Hi,all I’m at the end of my third cycle,before treatment my lmmunoglobulina G was
Mg/dl 5000 should be mg/dl767-1590mlaf,after the first cycle it was 1400 and after the
Second cycle 900… Any comments?
Perhaps this will work for you?hiccups!! I’ve found if I go for a short steep up hill
Walk ( so that I’m short of breath at the end) my hiccups goes/stops ( it might come back later!
Kr,davefriday.
Hi,
I too had difficulties in being diagnosed and got the sense the my local GP and hospital were not taking my problems serious enough. After months of demanding that something is wrong they finally discovered the high protein in my blood. After that I was then referred to a haematologist straight away who got me booked in for a bone marrow biopsy.
If I was you, and you are nervous about the waiting and see’ I would push for a referral to a haematologist as soon as possible. GP’s and nurses in my experience of diagnosis don’t seem to have any rush with this kind of thing. I only started getting the priority I felt I need once getting to the haematologist.
My advise to you would be keep pushing, keep annoying your GP until you feel you are being taken seriously with the right amount of priority you feel you need
Wonderment, are you having any success yet?
Your experience sort of reflects mine a bit. I started having tests in March, was diagnosed in May but didn’t actually start treatment until the very end of August, by which time my myeloma had moved from stage 1 to stage 2 and I was extremely anxious. However in hindsight as my paraproteins were yoyoing around (which is unusual, probably due to taking curcumin) I wish I had had confidence to wait. Having said that I was seeing a consultant by then. If you are not, I’d make a fuss. Lots of us learn to self advocate pretty quickly (or our partners do on our behalf).
You must be logged in to reply to this topic.
