When I found out that UHW wasa world renowned CLL research centre, It was a “would you believe it moment”, that my tiny corner of our small principality, could have dealt me such a card in the “post code lottery” game of our health system. One thing that I realised quite early on in my information search; was that I need to develop a good relationship with an informed cutting edge specialist and I’ve been dealt that card! I was referred to a consultant with a special interest in CLL on my first visit to UHW but it was just after a bone marrow biopsy and dx, so needless to say I didn’t know who fitted in where in all this! Now a year on and a little more informed, I hope that meeting him in May will give me this chance. On the matter of me “ soap boxing” at the unfortunate misunderstanding of many in general medicine, I’ve decided to be a good boy and met with a Doc from the GP surgery today and asked him to pass on the message, that I need to move on. So offered: that as I will inevitably be in contact with them during the course of this disease, I will try to be a boring patient. As we parted, me with tests in hand and he returning his gaze to the desk. I felt better in myself for I realised it had been my ignorance and not his.
Who would wish for CLL?I don’t think anyone would put their hand up. It is a life changing event all the same when it happens and in time we adapt. For me, (a man who never wished to need the help of others), the efforts of others to help me come to terms with CLL and show me where the information is and how to understand it, is astounding.
For what starts as sucha minuscule event in time. Develops into such a massive leap for us to take. Because of the cost to us of it’s eventual destiny, many have created and continue to create awealth of knowledge to help combat it. This saves lives and allows us to live life to the full. Thank you new friends I am continuing my learning and in all probability by the time I think understand, what was understood may then be history.
So I continue with my doodles and am currently musing over facts that evade me My most recent being whether my vitamin D levels might account for excessive bone and joint pain. It was CLLCanada who pointed me to recent mayo clinic studies in this area, and from what I understand; CLL patients who have low levels of D3 seem to experience greater bone pain than those with low levels in the general population, Although both show a similar incidence of low D3 levels, currently about 40% of all of us. In my search for a pain remedy many have pointed me at the importance of checking my D3 levels.
I received my answers from the lab today and they fall in the low end of the normal range which in the UK is between 20 and 30. Mine are 22, now there is also some debate thatthe bar for the normal range is set to high, as so many of the population show a deficiency. If that is the case my levels are good. As are my calcium and bone. So I willsupplement with D3 as do many of you and see if the discomfort reduces. I am however relieved at the results when I read Dr Hamblins blog , below.
Mutations And Mortality.posted by Terry Hamblin January 31, 2011
Alternative therapies for CLL
Paragraph 5
Vitamin D is being used for the bone thinning that occurs after the menopause, because its primary action is to control calcium metabolism. Whether it has a role in cancer and in CLL in particular is controversial. Certainly, CLL patients with low levels of D3 have a poorer prognosis, but it is not clear whether this is cause or effect. Clinical trials of vitamin D3 supplements will give us an answer, but until then, those who have faith in D3 should monitor their serum calcium levels, since hypercalcemia can be lethal.
On this note, I would like to thank Dr Hamblin for responding to several of my questions and wish him well in his own fight with cancer.Nick
FormerMember
HI Hairbair
you may be interested to see what i've added to you previous blog.
Jo, thankyou for your comments, I feel a bit guilty, I've been off in the stratosphere on my discovery missions. And havn't been following responses to my thoughts here.
The comment you made before has pricked up my ears, as yes having just tested my vitD levels, as (low normal) was the result I moved on for a while. But didn't consider that they may be dropping, as somthing goes on in cancer that causes an "eating up " effect of vitamin D. I think you have reminded me of a good reason to check the levels again.
As my long bone pain has worsened and the arthritus has also progressed, this could very well be going on. I will give them a little more of the red stuff on my next visit .Thankyou and take care Nick
