Results good and bad ????

JaneMGUSuk · Posted: Thu Mar 06, 2008 6:51 pm Post subject: Results good and bad ????

Hi everyone,

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
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 Tuesday
4th 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 all
day 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.

Does anyone have any info on this treatment, good or bad so that I
can be helped to make a more informed decision? Has anyone heard of
this treatment, or know anyone that has had this treatment?
_________________
Best wishes From

Jane in the UK

LIVE, LAUGH AND LOVE LONGER Smile

brainman · Posted: Sun Mar 09, 2008 11:11 am Post subject: Re: Results good and bad ????

Jane, I am sorry that I cannot be of much help to you. It sounds like even your medical team does not know exactly what to do. It took my medical team from June to November to make their recommendations. I know how frustrating the waiting can be.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 796 Location: UK

Hi, Jane.

My brother has monthly infusions of immunoglobulin [to cope with chronic Guillain Barre syndrome]. He does benefit massively from it, and without it I doubt that he could lead any kind of normal life. He doesn't enjoy being in the clinic for a day, but then his experiences of hospital life have been pretty dire. The actual infusion does not seem to be a problem.

What I would suggest is that you ask if you could meet someone who is on or has had this treatment. It can help to talk face to face with a person who has been through something of this kind.

JaneMGUSuk · Posted: Sun Mar 09, 2008 5:10 pm Post subject: Results good and bad

Thank you for your reply,

Your Brother is the second person I have heard of that has had success with this treatment, I am glad it helps him and I am going to give it a try to see if it helps me. In the USA I believe it costs $10,000 to $15,000 per transfusion, thats £5,000 to £7,500. I guess at that price I should be extremely grateful that I am gaoning to get this treatment each month.

Thanks again for the reply and wish your Brother well for me
_________________
Best wishes From

Jane in the UK

LIVE, LAUGH AND LOVE LONGER Smile

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