Jane’s MGUS journey continued

I accidentally brought two caravans (holiday trailers) on Ebay whoops! I am now using my interior design skills to renovate one of them to put it back on Ebay, I wont make a profit on it, I am doing it purely for a challenge. The other caravan is going to be going on a road trip, we are taking it from Portsmouth in the UK onto a ferry to Biloba (33 hours) in Northern Spain, then we will travel right across to Southern Spain to Denia a (9 hours) and then from Denia to Ibiza in the Balearic Islands of Spain. Once in Ibiza we have found a campsite to leave our caravan on so that we can have family holidays there, it’s only a 2 hour flight from the UK.

I am not feeling too great today, I am a bit dizzy and my legs, hips and back are so painful that I can’t sleep. I have taken Paracetamol and codeine, Tramadol and Ibuprofen but nothing has worked so I am sitting here at 01:48 writing my blog. I have been sneezing as well today so I hope I am not coming down with a bug, I shouldn’t be because of my immune treatment.

I have been busying myself on Facebook as well playing games and talking to friends, Facebook can be quite fun in a goofy kind of way. Catch you all later xx

I had my first infusion of Sandoglobulin IV on 12th March 2008. It is basically immunoglobulins (infection fighting cells) taken from about 20,000 blood donations, its taken from the plasma part of the blood, its heat treated to remove viruses and then feeze dried. At the Macmillan cancer unit it is then mixed with a saline solution and then given to me by intravenous drip. The treatment went very well and the only side effect was fatigue for 2 days. I have to have the treatment each month for six months, my next one is on 9th April 2008. This treatment is a measure to attempt to keep my infections under control, it will not help my Smouldering Myeloma. It is not known whether this treatment will work for me so it is just a trial for 6 months, if it is not effective they will stop it.

I have had an MRI of my spine and I have had a skeletal survey of my whole sleleton by x-ray, I wont get the results until 9th April. These tests are done to monitor my bones as myeloma can cause them to lose density and can cause holes/lesions to form in the bones making them fragile.

My symptoms are still the same achy legs, hips and feet and hot sweats but no new ones have developed so that is good news. Mentally I am coping exremely well and I am doing just fine.

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.