It's been two tough months

April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.

All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.

Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.

Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac

Peripheral neuropathy reduction

I have been suffering from peripheral neuropathy caused by thalidomide maintenance for multiple myeloma. After stopping thalidomide the peripheral neuropathy reduced but was still present. The soles of my feet were numb (about 6/10), my feet were often cold and when cold painful, I wore my socks 24/7, I could not walk in bare feet.
To relieve the peripheral neuropathy symptoms I use a multi-vitamin B (including B1, B6, B12 and folic acid) and alpha-lipoic-acid (300mg one/day).
Recently I changed the brand and dosage of the alpha-lipoic-acid to 600mg per day, 300mg at breakfast and 300mg at dinner.
After 6 weeks I began to feel a gradual change in my feet. Now the numbness has reduced (about 2/10), my feet are rarely cold, can walk in bare feet and don’t have to wear my socks in bed.
I attribute this change to the increase in alpha-lipoic-acid.
I was prepared to increase the alpha-lipoic-acid to 1200mg/day but will stay at 600mg/day. If future treatment causes the peripheral neuropathy to return I will increase the alpha-lipoic-acid then and consider including L-carnitine and L-glutamine.

Links:
Myeloma legend Minnesota Don has made an excellent posting on his blog (myelomahope) summarising peripheral neuropathy treatment. The comment at the bottom by Habubrat on the use of alpha-lipoic-acid during chemotherapy is worth reading as well. Don has 7 other postings on peripheral neuropathy treatment found in his labels column.
David Emerson (Beating myeloma) has a good summary of alpha-lipoic-acid. It is worth searching for other peripheral neuropathy articles on his site as well.

Myeloma blogs 1

If you are reading my blog (Sid’s multiple myeloma journey) you may be interested in other myeloma blogs. There are many ways to find these blogs.
Here are the three main sources that I use to access other myeloma blogs.

Planet myeloma
A myeloma blog roll created by Beth who is a myeloma legend, blogging since 2003.
At last count there were links to 36 myeloma blogs: June 2009
On the left of her blog roll are links to postings on listed blogs that have been created in the previous seven days, updated hourly.
I access planet myeloma daily to view the new postings.
Well done Beth, you have given the world wide myeloma family an excellent source of myeloma blogs.

Multiple myeloma forums
Created by Andy, April 2009.
On the home page is a list of featured blogs with a link to the entire myeloma blog collection, 35 so far: June 2009
While in myelomaforums web site have a look around. There is a good forum, featured articles, myeloma news, RSS feeds and much more.

Google
Access your Google
Type myeloma blogs/enter.

Or
Type myeloma blogs.
Pick down arrow at top
Select “more”
Select blogs.
For the latest postings pick “sort by date”.

Follow my blog by email alert

Like to know how to follow my blog by receiving an email alert each time I make a new posting.
This comes from the Google Blogger Help Group:
http://groups.google.com/group/blogger-help/web/faqs

Feeds, promotion and search indexing.
4. How do I notify people of updates to my blog?
Blog Alert will send your family and friends daily email notifications when there are new posts to your blog. They don’t need an account. They just need your feed URL and their email address.

Click on this link to access Blog alert. http://www.shootthebreeze.net/blogalert/index.php

Enter this information into the dialogue box.
Feed URL; http://supersidnz.blogspot.com/atom.xml
Email; Your email address
Submit.
You will receive an email notification from Blog Alert for your confirmation.
After confirmation, when I make a new posting you will receive an email from Blog Alert that contains a link to my posting and the first 20 lines of my posting.
Click on my posting link to view the full posting.
Included in the email is a link to click if you no longer whish to receive Blog Alerts for my blog.

Follow my blog by feeds

Like to know how to follow my blog and too afraid to ask? Here is some help.
The assumption is your computer operating system is the same as mine; windows XP and internet explorer7. I am not sure how things work on other systems. See, I’m not perfect after all!
Following blogs by feeds is the easiest way I have found though it does rely on the blogs feeds being set up properly.

Feeds:
What is a site feed? An explanation is in this link.
http://help.blogger.com/bin/answer.py?hl=en&answer=41450

Before starting, pick favourites center. For those who have never done that before (and I know 2 who are in that basket) that’s the big yellow star at top left.
There you will see favourites/feeds/history. Feeds are where we look for any feeds.

How to subscribe to my blog:
Scroll down to the bottom of my blog.
Pick subscribe to: Posts (Atom)
In the new window that appears pick “subscribe to this feed”
In the Subscribe to this feed dialogue box:
Name: retain default or edit or write what you want.
Create in: Your choice, default feeds directory or create a sub folder.
Pick subscribe.
The blog feed page opens.
Close the feeds page.
Pick favourites center then feeds.
There you will see my blog name or the name you wrote.
My blog is scanned regularly by feed readers. When I have made a new posting my blog name will be in bold text.
My blog feed is set up to show all postings in full. Other blogs maybe set up differently.
Helpful comments are appreciated.