[mariposaParticipant]

I had my first appointment at hematology…now I have to have scans and a bone marrow biopsy. I am trying to keep calm and not get too worried. As I ‘m sure you’ll all know how I’m feeling, so wish me luck and give me the strength to deal with whatever comes my way.
I will keep you updated when I know the results. At least I’ve taken the first step.

• This topic was modified 2 years, 3 months ago by  mariposa.

[mulberryParticipant]

As you say Mariposa, we have all been through this terrifying route of discovery.
These weeks ahead will seem an eternity, until you know the details of what you are facing.
Despite everything, myeloma is actually pretty slow growing, so you have time on your side for your doctors to investigate all likely aspects and complications of myeloma and associated conditions, to work out exactly what is going on, and to assess whether treatment is advisable now.
The scans should show any bone lesions, 80 % of us have lesions at diagnosis, and will show whether they require additional treatment.
The bone marrow biopsy is not pleasant, but is better if the performing doctor leaves the local anaesthetic for 5 minutes or so to work. If the doctor is reluctant to do this, I ask for gas and air. I don’t know why this isn’t offered, as it makes the whole procedure much more bearable.
The results are really useful, although to us patients they can be alarming. Some myeloma patients have over 90% myeloma cells in their bone marrow (how we function like that I don’t know). The biopsy should also check which proteins are evident on myeloma cells- most of us have quite a variety present, of a wide possible range. This ‘FISH’ tests gives drs information about the starting point of our myeloma, and the degree of ‘risk’ (statistical treatability).
Do let us know how you get on.
Jane p

[tony642Moderator]

Hi Mariposa,

I am one of the forum volunteers. Have you had a biopsy because the medical staff suspect you have Myeloma, or just to rule it out? Whichever the case, I know it is not an easy time, but whatever yuo have heard about Myeloma, if the biposy shows that it is, there are lots of very effective treatments out there and some people go on to lead very normal lives for a lot of years.

Dont get too disheartened about it, most of us on here have been exactly where you are and know what you are going through. We are here to try and help you through, whatever happens. Please let us know when you get your results, and dont look too far into the future, just take things one step at a time.

Sincere regards, tony

[kh0305Moderator]

Hi Mariposa,
It is difficult not to worry I know but you are doing the right things by trying to remain calm and take things one step at a time. At least once you get the results through you will know what you’re dealing with and can start to progress with treatment. Sending all our best wishes and please keep us posted as to how you get on xx

[mariposaParticipant]

Bone marrow biopsy tomorrow. I’ve just got my blood results, not sure how to read them. Paraprotein 9g/L, Kappa /lambda ratio 1.78, Sodium 138 mmo/L, Calcium 2.49 mmol/L , Lymphocytes 2.53 x 10 ⁹/L and lots more. Not sure if these are reasonable levels or higher or lower.Thoughts appreciated. Thank you.

[mulberryParticipant]

Obviously we’re not doctors, and myeloma is multi faceted, so all the results need to be looked at in the round.
However smouldering myeloma can have paraprotein levels of up to 30g/l, so 9g/l looks hopeful of a less worrying result than full blown myeloma. The bone marrow biopsy should tell what percentage of cells are myeloma cells . These percentages often sound alarming, but as long as you don’t have over 60% myeloma cells in your bone marrow, you will not necessarily need treatment. The results will also show which proteins are on the surface of myeloma cells & whether you have certain chromosomal changes. This information will be useful as a baseline, whether or not you need treatment at the moment.
Best wishes for tomorrow.

[mariposaParticipant]

Biopsy done,it was bearable, the doctor was very kind and waited for the local anesthetic to take effect. She had to have 2 goes at getting the bone sample,but managed it at the end.
She is hopeful that I won’t need to start treatment straight away. I should know the results in 2 wks.
Thanks for all your support

[kh0305Moderator]

Hi mariposa,
Glad the biopsy was ok and that things are moving forward for you. There are just so many results to take on board aren’t there? You’ll start to get a feel for them as you go through the process and over time will start to focus in on a few as markers which makes it slightly easier to follow! As Mulberry says, everything has to be looked at together but those results seem reasonably positive for no immediate treatment. Hopefully the results will back this up and you can have some time before needing treatment. Keep us posted xx

[mariposaParticipant]

It turns out that I’ve got Mgus. I know that it can develop into myeloma, but for the moment I am so thankful to know that I will have regular blood tests to keep watching for any changes.
I really appreciate all the support and encouragement, it really helped me get through the tests and the waiting for results.
Thank you and best wishes to you all.

[mulberryParticipant]

So pleased that you have MGUS rather than anything else! There is an excellent chance that it’ll remain permanently ‘under the radar’ , I hope so. Jane

[cloudspotterParticipant]

Hi Mariposa, and All

I’m so glad to hear that you “only” have MGUS, and I do hope that it never becomes a problem.

I was diagnosed with MGUS in 1999, then Low grade non hodgkins lymphoma (NHL) in the bone marrow in 2001.
Blood disorders can be *so* complicated!
As a result of this, my Paraprotein levels gradually rose to 75.6 grams per decilitre
Unfortunately, these paraproteins attack my peripheral nerves, and give me peripheral neuropathy
My mobility has gradually deteriorated, and I now use a rollator and a boot buggy, and hire a “Tramper” all-terrain buggy when I can
I have lost a huge amount of manual dexterity, and find it extremely difficult to write, handle cash, open jars etc.
My Haematologist is concerned that the MGUS may finally be progressing to Myeloma (I’m nearly 71 years old), which he would want to treat with chemotherapy.
My concern is that all chemotherapy drugs damage the nerves, with Thalidomide and Vincristine being the worst offenders. I really don’t want my neuropathy to get any worse, or to start getting neuropathic pain (which so far, I’ve escaped). Unfortunately, other treatments (eg immunotherapy) can have side effects too. At my age, I already have various health issues (eg deafness and tinnitus, cataracts, etc etc)
The Haematology staff, and “Ask the Nurse” have been very helpful, but does anyone have any personal experience of this situation?
Thanks very much

[mariposaParticipant]

So sorry to hear that you have so much to cope with. I know that for some people, Mgus doesn’t develop into anything more, but I am aware that every time I go for a check up things can change quickly.
I have got to see a neurologist for possible Parkinson’s , and also a physio in a month.
I will be 70 in January so I a similar age to you. I try to be positive and hope that I am one of the lucky ones.
Look after yourself x

[cloudspotterParticipant]

Thanks, Mariposa, that’s a very kind reply. These check ups can be a bit daunting, can’t they?
My sister in law has Parkinsons, and is a real inspiration. Needless to say, we have plenty to talk about on the medical front!
I do a “gratitude meditation” every morning. It helps me stay positive, which presumably must be good for my immune system, and it’s quite surprising the things that do actually go right in life without us actually noticing.
Wishing you all the very best of luck
Take Care x

[mulberryParticipant]

Hi Cloudspotter
In myeloma terms, at 70 you are ‘average’ age for diagnosis, so if you do end up requiring treatment, please don’t feel that you are fundamentally unlikely to cope with it, respond to it or benefit from it. (I don’t mean to suggest that your age makes it more likely MGUS will develop into full blown myeloma).
It’s not surprising that you would be worried about triggering worse neuropathy than you are already experiencing, but being aware of it,will benefit you as if you do have any loss of sensation, drug quantities can be reduced. I had drug reductions twice (so to half dose) during induction after some loss of sensation. My myeloma was nevertheless got under control, and I have not suffered permanent neuropathy.
Here’s hoping that you stabilise again with MGUS so you don’t need to try out treatment.
Best wishes
Jane

[kh0305Moderator]

Hi Mariposa,
Pleased to hear the MGUS result. Keeping my fingers crossed for it to stay that way for you for a very long time xx

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