AZACITIDENE TREATMENT

[AFWA6]

After lengthy and initially inconclusive investigations I have now been moved into the Intermediate risk group. My blast count is now recorded at 6.9% following a complete test result at the turn of the year. My team have begun the search for an unrelated donor as it is intended that I will be considered for a transplant this year.

Subsequent to that I’ve been subject to every test known with satisfactory results across the board. Which is obviously pleasing that no other complication stands in the way. My FBC has been maintained and I’ve remained transfusion free since first being diagnosed in June last year. Furthermore my strength and stamina have returned to a level pre-diagnosis, or indeed better than pre-diagnosis. I’m able to walk 5 miles, climb stairs and complete normal domestic tasks that were unthinkable just 12 weeks ago. I had a bit of setback over Xmas with a nasty bout of gastritis but I’m now feeling much better and healthier than I’ve done so for, well, years. I’ve tried to keep myself informed and connected to the group but there’s been so much going on I’ve had less time to myself of late. I’m sure I’ll have plenty of time before long.

I’m approaching my treatment with Aza with some confidence. After a really helpful conversation with Sophie I’m probably at my best, physically and mentally, to meet this next challenge. My first cycle will begin on 7th March. 7 injections over 9 days and then 21 days rest to complete the cycle and repeat. I’ve read up on the likely side effects and potential issues but there’s not much I can do other than to get on with it. I’m armed with evening primrose oil as advised by many folk and so I’m good to go. Wish me luck.

[Devjon]

After lengthy and initially inconclusive investigations I have now been moved into the Intermediate risk group. My blast count is now recorded at 6.9% following a complete test result at the turn of the year. My team have begun the search for an unrelated donor as it is intended that I will be considered for a transplant this year.

Subsequent to that I’ve been subject to every test known with satisfactory results across the board. Which is obviously pleasing that no other complication stands in the way. My FBC has been maintained and I’ve remained transfusion free since first being diagnosed in June last year. Furthermore my strength and stamina have returned to a level pre-diagnosis, or indeed better than pre-diagnosis. I’m able to walk 5 miles, climb stairs and complete normal domestic tasks that were unthinkable just 12 weeks ago. I had a bit of setback over Xmas with a nasty bout of gastritis but I’m now feeling much better and healthier than I’ve done so for, well, years. I’ve tried to keep myself informed and connected to the group but there’s been so much going on I’ve had less time to myself of late. I’m sure I’ll have plenty of time before long.

I’m approaching my treatment with Aza with some confidence. After a really helpful conversation with Sophie I’m probably at my best, physically and mentally, to meet this next challenge. My first cycle will begin on 7th March. 7 injections over 9 days and then 21 days rest to complete the cycle and repeat. I’ve read up on the likely side effects and potential issues but there’s not much I can do other than to get on with it. I’m armed with evening primrose oil as advised by many folk and so I’m good to go. Wish me luck.

All the very best to you, and hope you soon find a suitable donor.

[chris]

Hi Andy

It seems incredible when you’ve been feeling so fit and well for quite a while that you’re now heading for a stem cell transplant, by way of Azacitidine. I hope that a good matched donor is found for you soon and that you don’t have too many side effects with the Aza. There seems to be a big range of responses and, as you say, you won’t know until you start. Glad you’ve got the evening primrose oil ready to ease the injection site soreness. Anecdotally, it helps people so fingers crossed for you.

One thing you should be careful of is getting infections as Azacitidine usually lowers white cell counts so best treat yourself as needing extra precautions in crowded indoor spaces!!

Keep safe and keep walking and staying fit!

Take care

Chris

[AFWA6]

Hi Chris, It does indeed seem incredible that I’m being put forward for a transplant given how well I feel. Having said that the level of abnormalities could be progressing and the window of opportunity is open now. To wait a couple of years may reduce the chances of success and I’d rather get it over and done with asap.

I’m aware that my vulnerability to infection will increase but the protective measures will be no great hardship. I’ve continued to reduce my exposure to others for months now and I’m comfortable with that in the future. My general health is good and my fitness levels are improving which can only help speed up my recovery.

The whole MDS thing is still confusing and I’m still not on terms with the technical jargon but I think I know more than my GP! Every time I see him or the other Doctors at the Practice I have to give them a detailed explanation of my condition. Anyway all is good and I’m looking forward to a brighter future.

[AFWA6]

Day 5 of the first Aza cycle completed yesterday. Seems to be going well. No major side effects so far although injection sites are a bit sore and I’m feeling a little more tired. I’ve maintained a mile a day average walking this week but today was a little bit more tiring.

I’ve not had to take any anti nausea medication although I’m using lots of evening primrose oil on the injection sites. Otherwise ok.

2 days to go and then, due to Easter, nearly 4 weeks break before the next cycle.

Overall my first week I’d say was positive

[chris]

Dear Andy

All sounds good and well done on keeping up with your walking. Especially in chilly weather and has there been snow in your area? We’ve missed it in our warm, dry South East corner and today is gloriously sunny and warm!

Let’s hope your next cycle goes well and pleased to hear you haven’t needed the anti nausea medication either.

All best wishes

Chris

[AFWA6]

Later today I begin my second cycle of AZA which I’m not exactly looking forward to but keen to get going nonetheless. My first cycle went well and my FBC recovered really well during the two weeks downtime. In fact my platelets were recorded at 118, the highest since diagnosis, and everything else was heading upwards

In the main I’d say I was side effect free apart from feeling a little more fatigued after day seven. That improved over about a week and I even managed 6 hours of gardening over three days over the Easter weekend! In comparison to 9 months ago I do feel much stronger and generally quite well and remain transfusion free.

I hope that this cycle and subsequent ones go as well.

Best wishes

Andy

[chris]

Dear Andy

Wishing you a trouble-free 2nd Aza cycle. The first cycle seems to have gone ok and I admire the 6 hours of gardening you did!! The nice weather has taken us back to our allotment so we’ve been planting our first-early potatoes and sowing beets, shallots,chard, spinach, spring onions, carrots and radishes. Finally the mood and the sunshine took me today and I’ve sown tomatoes, aubergines and sweet peppers-along with some sunflowers which reached about 8 feet tall last year!!

Have you heard any more about a stem cell transplant?

Take care

Chris

[AFWA6]

Hi Chris

I’ve heard no more regarding a transplant yet although I’m due a review with my Doctor in Liverpool mid May. I’m assuming they’ll be evaluating the AZA treatment at that review. It’s certainly has had an impact, for example, platelets dropped to 26 immediately after the first course! However they bounced back a week later to 118! That’s the highest recorded since diagnosis. Similarly HBC increased by 10% to 110 after that first cycle. I’m told this is to be expected although subsequent cycles whilst maintaining an upward trend may not be so dramatic. Fingers crossed.

It’s surprising how quickly you slip into a routine and adjust to the treatment regime. The 7 day process gets a bit tiring but is manageable if I take it easy. During the down time as I call it my energy levels improve and I’m less fatigued. Thankfully I’ve not suffered any nausea or other side effects and any discomfort at the injection sites recovers after a week or so. Emotionally it’s a bit of a roller coaster and I get a bit anxious awaiting blood test results. There’s not much I can do about it but I have faith in my team to help me through as best as possible. This is a long term thing and it’s easy to lose sight of the end game so I try to look forward as much as possible. In an attempt to lighten my mood I’m adopting the trend for three word political slogans, so this month’s is; Get AZA Done!

Andy

[chris]

Hi Andy

Hahaha. “Get Aza done”! I like your style!!

Awaiting blood test results always seems to bring about some anxiety and more so if you are on treatment and looking (and hoping!) for improvements. You seem to be managing your anxiety really well and doing all the right things in terms of exercise and fresh air. With warmer weather coming, I certainly feel more cheerful as I focus on sowing seeds and looking forward to harvesting crops! I am thankful I have the gardening gene -completely un-mutated!!

Hope this week goes well and you can look forward to improved counts afterwards.
Bye for now
Chris