Jane’s MGUS journey continued

I went for my follow up today after being told by my Haematologist last week, that she was 80% sure my MGUS had turned to myeloma and that I may need to start chemo. My Haemo had a video conference with a big UK cancer specialist hospital, with several myeloma specialists in attendance. STILL they are not sure whether I need chemo, some said I did and some disagreed, in the end they told my haemo it was back to her to decide the best course of action for me. I am such a difficult case that no one seems to know what is going on. I asked for a diagnosis and my Haemo says I now have smouldering myeloma.

My latest results are the same as the ones from a week ago

Bone Marrow Plasma 25%

IGg paraprotein 44.8 (UK) 4480 (US)

IGM is too low

IGA is too low

I have hypogammaglobulinaemia

All other bloods and urine are fine

B2 microglobulin is being tested

Blood viscosity is being tested

Blood and urine taken again today dont know when I will get the results.

I forgot to ask for the results of my MRI which was done on Tuesday4th March.

Due to my recurrent infections my Haemo suggested to the panel of specialists that I may benefit from Immunoglobulin transfusion, some of the panel said it could work and others disagreed, but my Haemo has said it wouldn’t hurt to try it. I have now been signed over to the care of the cancer unit (Macmillan Unit) at my hospital, rather than the Haemo department. I Have to attend on Wednesday 12th March at 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/or allergic reaction. If my blood is already to thick/viscous then I wont be able to have the transfusion until my blood is thinned out. Sandoglobulin is basically a mixture of Immunoglobulins from a variety of blood donors, its heated and dried to help remove any viruses such as HIV and Hep C and then it is mixed with saline and hooked up to an IV drip. I have agreed to try the treatment but I am obviously worried, but its got to be better than starting chemo.

Hi everyone,

Today I got the results of my bloods and bone marrow biopsy. Lets
just say the news was not good.

My IGG is 4480 (44.8 UK)
My bone marrow is 25% plasma cells and a small amount of myeloma
cells have been seen in the marrow
My Electrophoresis light chain M component is 25g/l
My albumin is 34
MY B2 microglobulin has not been measured but is being done today, I
dont know when I will get the results.

basically my haemo has scheduled an MRI scan for Tueday 4th March and
is having a video conference with another specialist cancer unit in
our area on Thursday morning 6th March and I have to go back to the
clinic at 4.10 British time on Thursday to find out if Chemo
treatment needs to be started. My Haemo is 80% sure that I need
treatment and said that if its not smoldering myeloma then its full
blown Multiple Myeloma, but until she has had the video conference
and discussed my case with the oter specialists, she can’t give me a
100% diagnosis. She has said that I definately no longer have MGUS
and that I have progressed. A full skeletal survey is being done
after the MRI as soon as my aemo can get an appointment for me at the
x-ray department.

I will keep up my healthy eating and my supplements and keep
positive, life dont stop because you get a bit of bad news, and I am
sure as he*! I am not going to be miserable. I dont yet think its
sunk in yet though as I feel numb, but oh well never mind.

Love to you all and I will update you all again on thursday
Best wishes
Love Jane x

2 days to go until my clinic appointment, every time I go past the hospital on my way shopping I get butterflies in my stomach. I am feeling ok though, my ear infection is clearing up but the antibiotics have given me thrush in my mouth. My Husband’s eye test went fine, it turns out they had the machine set wrong for the last two tests so they apologised and said his eyes are fine, thank goodness. I will update you all after my appointment on Thursday.

Hi Folks,

I have had a relaxing day today, I have done hardly anything. I woke up this morning feeling a little under the weather, so I visited the doctor and it turns out I have an ear infection. My face and area around my jaw and ear has been giving me pain for days and I finally gave in and went to the doc’s, my ear is very red inside so its infected and I am on antibiotics yet again. This is the 5th lot of antibiotics in 3 months which I have had to take due to infections, never mind as long as they fight the infection and I feel well again, thats what’s important. I’m sure in a few days they will kick in and I will be back to my old self again I have decided I am definately going to ask for a second opinion when I go to the hospital on the 28th Feb, no matter what my results are.

I have to go out tomorrow, I have run out of a few of my health supplements so I have to visit the health store. I also have to buy presents for my Grandsons 4th birthday on Sunday. My Husband has to go to have an eye exam, he has failed two field of vision tests and they have requested he have a third test, so hes having that done tomorrow, I sure hope he’s ok.

I couldn’t sleep last night because I was worrying about my hospital appointment on Feb 28th. I finally went upstairs to bed at 4.30 this morning. I phoned a helpline today and spoke to a specilist Myeloma nurse who was very helpful and she has suggested that I request a second opinion at my next hospital visit to clarify my diagnosis whatever that will be and to generally make sure that the diagnosis is correct and give me some peace within myself and stop me worrying. The nurse I spoke to agreed with me that my numbers/blood levels do not meet the criteria for an MGUS diagnosis, they are too high for that but for whatever reason at present the diagnosis is still MGUS.

MGUS is diagnosed if there is IGg of less than 30 -mine is 44.8

MGUS is diagnosed if the bone marrow contains 5% or less plasma cells - a year ago mine was 13%

MGUS is dx if theres no anaemia - I am not anaemic

MGUS is dx if there are no bone lesions - I have no bone lesions

MGUS is diagnosed if the kidneys are healthy - I have healthy kidneys

A diagnosis of MGUS is usually ruled out with figure like mine especially with the added finding of bence jones protein in my urine and the recurrent infections. Add to that the fatigue and sweats and aches and pains and I think I have something more than MGUS, I really hope I am wrong and that a second opinion confirms that its still MGUS.

I am finding it so tough waiting for these results, every waking moment is filled with fear, fear of hearing those words, Mrs Marley I am afraid you have Multiple Myeloma. To think that this appointment next week could change my life forever and set me up with the fight of my life. I am trying to stay positive and I am certainly not miserable, I am just scared. I hope I am totally wrong and that my gut feeling is totally wrong too. The 28th of February can’t come quick enough for me.