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Andy

 

and1h@talktalk.net

1958 / Class of  '01 / Thal-Dex, diet and exercise / Updated: 8/10

I have just cycled 25 miles on my bike and have come back exhilarated. The wind was very strong but it was sunny. Last week I took my daughter scuba diving in Tenerife, I went parascending, jet skiing, got towed behind a boat on a big inflatable banana. I also went down the tallest waterslide in Europe at the Siam park. Why I am writing this, I don't know, I just had this sudden urge to write it and if it is of help to anyone then it will have been worth doing.

Ten years ago, at the age of 42 I started to get serious pains in my chest. Eighteen months later, being unable to walk to the toilet due to the pain in my back, being unable to hold down food or water, I was taken by ambulance to hospital. In June 2001 I was diagnosed as having Multiple Myeloma. I underwent 6 monthly doses of VAD chemo and then in April 2002 was given an autograft. After 3 weeks in isolation which was sending me stir crazy, I was allowed to return home to my beautiful wife and two lovely children who were aged 2 and 5 at the time. I was undergoing serious depression and found things like peeling an apple very difficult to motivate myself to do. The hardest thing that I have ever done was to build a chess set for my daughter when I was feeling so low that It was painful to even motivate myself to even cross the room.

With each good blood result and a lot of being shouted at (which was what I needed) I was able to shake off some of the wallowing in self pity and enjoy each new day of life. My biggest help in this was getting on Dr. bike (slowly at first). I find a good cycle ride always gives a good buzz of endorphins. The second biggest help was getting back to work and having that normality of having something positive to get out of bed for. Luckily up to now, my employers have been very accommodating towards my medical appointments and treatment.

In 2004 I needed more treatment which involved 6 months of cyclophosphamide, thalidomide, and Dexamethasone followed by a maintenance dose of thalidomide. Great, another four years of remission, I am cycling to and from work and doing a 50 mile ride on the weekend and they have just collected half the stem cells they would need for another autograft.

2008 - Sh*t what's this IGs creeping up. That's ok, two new drugs have been developed in the last five years. On with the Velcade. Well, this is holding it back but the IGs don't appear to be coming down and you need some vertebroplasty to stop the c7 vertebra from crushing the nerve. Oh well, a new derivative of thalidomide has been developed and the NHS have done a deal with the manufacturer so they only have to pay for it if it shows a positive result.

Feb 2009 - Brilliant: within a month of Dexamethasone and Lenolidamide the IGs are back down to 14. I asked the consultant if it might be a good time to try and harvest some more stem cells. Yes, there is an unlicenced drug called plerixofer which helps to release the stem cells from the marrow. If we wait for it to be licenced in a couple of months it will cost 12,000 and it is unlikely that we will get it. Sign here if you want to try it. Good news we now have enough stem cells to put in the bank for another autograft. Trouble is that the IGs are once again creeping up.

Nov 2009 - We don't seem to be able to bring your IGs down, I will book you in for an autograft for the new year. - Depression not nice to meet you again, pass me the Prozac. OK, what is the highest dose of Dexamethasone, cylophosphamide lenolidamide combination that I can tolerate. We can up your Dexamethasone from 10 x 2mg to 20 x 2mg tablets once a month for 4 days, 10 x 50 mg cyclophosphamide once a week and 1 x 25mg lenolidamide tablet for 21 days and you can then have a week off as it can affect your nerve endings just like the thalidomide. Wow, instant improvement.

OK, everyone has their story. What have I found to be of help. A supportive wife first and foremost. A feeling that I am trying to control everything that I can control. I read a book called the Omega diet by a lady called Judith Wills. It appeared to make sense to me and so for the last 6 years I have tried to follow the principles of nutrition laid out in the book. I have a breakfast which contains fruit different types, oranges, apples kiwi fruit, pears, tangerines, a banana a day; I also eat a lot of red grapes because I heard somewhere that they were good for you. My breakfast cereal contains pumpkin seeds, linseeds, sunflower seeds, walnuts, hazelnuts, brazil nuts (for the selenium), cashew nuts and I top it off with natural yoghurt. I don't eat much red meat and try always to avoid processed food. I eat plenty of oily fish and try to eat some salad each day containing a mixture of colours (peppers, tomatoes, lettuce, cucumber, broccoli, cress, carrots). I have a large cup of black tea with milk to get things moving in a morning but I drink lots of organic green tea (about 3 large cups a day - it seems to taste better from leaves not tea bags) and filtered water. In addition I like red bush tea and a Chamomile tea in the evening. 

I also take a 500 mg vitamin C tablet ( be careful as I have read that vitamin C can inhibit the effectiveness of Velcade), cod liver oil, a thousand mg omega 3 fish oil capsule a couple of teaspoons full of extra virgin olive oil and a couple of walnut oil (well, they do say that the Mediterranean diet is healthy). I also have treats like chippy night on a Friday, the odd bar of chocolate (well, the cocoa beans contain antioxidants and you do need some saturated fats) and a glass of red wine with my evening meal (again for the grapes). For a long time I have washed my tablets down with a glass of water containing a teaspoon of honey, two tablespoons full of apple cider vinegar (yuk - but they do say an apple a day keeps the doctor away), a couple of tablespoons full of lemon juice and since reading about the benefits of curcubin last November I have added, a teaspoon of turmeric and some black pepper. It all tastes foul. I also put the turmeric and black pepper on my food.

I try and find time to walk 3 miles a day during my lunch breaks and every other I go for a cycle ride when I get home from work. This is usually for about half an hour. Then if there is time, I will go for a longer ride at weekends. I have a set of exercises which I do every morning to try and keep my core muscles strong. This includes pull-ups, press-ups and sit-ups and a few Pilates poses to strengthen the lateral muscles around the waist. On the days when I am not cycling I have a shiatsu routine designed to improve your suppleness. I try to get plenty of sleep (even if this requires the use of the odd zopiclone to counter the effects of the steroids), I also play guitar in a rock band which is something I have done from being young. The most important thing in my life is to maintain a good life balance which means spending every other available moment doing things with my wife and kids, such as kicking a football around with my son (not premier league standard) or other ball games. For my family's sake, I try to keep things looking as normal as possible. I also pray very hard everyday. You never know someday.

 

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