Wednesday 25 September 2013

Results and Clinical Trial

Hi All,  After an anxious wait, I have seen the Dr and got my 8 weekly results back. Still at the smouldering stage but kappa/lambda ratio at 6.5 (Kappa 33 Lambda 5), LDH 336, Iga 8.24  which are all up, so it looks like my SMM is active. I have been referred to a new Dr who is one of the leading lights in research in this country ( Australia) for possible involvement in a clinical trial for Siltuximab. ( Hopefully correct spelling) This is for high risk smouldering myeloma patients and it looks like I meet all the criteria. Will keep you informed.



Thursday 19 September 2013

Hi All, off to hospital today to see if they can finally remove the skin cancers I have growing on me. This will be the fourth admission for the same thing so I hope that my blood work is ok and they don't cancel it again.  Unfortunately I have another skin cancer on my leg so it might be a bit of a marathon getting them all done. Have to see my haematologists next week to see how the my SMM is progressing ( or hopefully not) so it is going to be a fairly long week.



Thursday 12 September 2013

A lot of waiting.

Hi All, Still waiting on the results of my 8 week tests. Skin cancer surgery next week but that may be in doubt as I have managed to pick up chest infection. Off to the spare room again so I don't keep my wife awake as she has to get up early for work. I know it is probably on one of your blog's but has anyone used any form of natural immune booster that works!. I am fairly sure that all these antibiotics are not that good for me.



Monday 9 September 2013

a Testing Time

Hi All,  Hospital rang today and have booked in my surgery for skin cancers on the 20 September as long as I do not get any further infections. That's one problem down. Have got my 8 weekly blood tests and some new ones used to track active myeloma tomorrow. A little apprehensive about those as I have the feeling they will not be good. Starting to have some kidney pain and also problems with my hips so am steeling myself for bad news. Hopefully my gut feeling is wrong!!



Friday 6 September 2013

Surprise Visit.

Hi All, After a stressful day at the hospital waiting to see of they would remove the new skin cancers it was a real surprise to see my daughter waiting at my wife's work when I went to pick her up. She had flown 2000km home with her partner to cheer me up. A late father's day surprise. Had to explain to her what is likely to happen over the next few months but at least we are all on the same page and feeling positive going forward.

Wednesday 4 September 2013

Hi All,  Off to hospital tomorrow to check if I can have 3 skin cancers removed.  I was supposed to have them done a couple of weeks ago but a very low white cell count made the Drs a little wary about me picking up another infection. Been getting plenty of these recently. I have had well over a 100 skin cancers removed ( luckily mostly BCC,s and SCC,s) although 3 early melanoma's taken out as well. My dermatologist informed me a study done in Sweden found a co-relation between IGA MGUS?MM and non melanoma skin cancers so this may be partially the cause of my problem( along with many hours of lying in the hot Australian sun as a child!!) I also have my 8 weekly blood tests coming up on Wednesday next week and am a little concerned about the possibility that there has been another increase in my paraprotein and a further change to my Kappa/Lambda ratio. Just have to take it as it comes.



Saturday 31 August 2013

Myeloma Journey

Hi All, this is my first post in hopefully a long line of posts. I was diagnosed with Iga Kappa MGUS 4 years ago but 4 weeks ago found out that I now have high risk Smouldering Myeloma. With an abnormal Kappa/Lambda ratio and 15% plasma cell load (plus Iga papaprotein which has a higher risk of progression than other types of Myeloma) I am debating as to whether I should enter into early treatment. I live in Australia and at present first line treatment is still " watch and wait" until some signs of end organ damage is present. I am wondering if anyone has gone down the early treatment course and what the results of this where.

Cheers, Leigh