Hello All,

I received my third infusion yesterday. My numbers are improving very slowly. This week's CBC was 9.6 (last weeks was a 9.4). Treatment four is next Tuesday.

Siriann, so sorry to hear of your diagnose. I know this must be very hard for you. Try to think positive. Write down any questions you think of so you can remember them when at the doctor's office. My thoughts and prayers are with you.

I hope everyone else is doing well.

Dear Chris - go for it! The drug trial sounds like a great opportunity. We hope you get the real drug and not some placebo - do they do that in England? Sounds like someone is listening...and your ultrasound will shed some light on what's going on with your digestive tract.

Lou's next vampire visit is on 4/23. We leave for Hawaii on 4/25 and won't receive any injections until our return on 5/10....so I think the doctor is planning to order a massive dose to get him through the two weeks.

I've managed to get a head-cold and I'm trying hard not to infect Lou with it. I have loads of work to to in preparation for leaving work for two weeks. I have two big events the week we return and one of our largest events on 5/20...just 10 days after our return.

Oh my - I'm going to enjoy vacation. Now, if I can just get Lou to quit worrying about the flight and our dog.

Every evening I read aloud all the new posts to Lou ...we are both hoping the best for all of our MDS family out there.

Chris...are you watching the posts...this is 497...and 500 is the BIG one! Good Luck!

Gayle & Lou

I hope you have a very good time in Hawaii, it's a wonderful place to visit, we have been there 4 times and it will always be some of our best memories....both of you stay healthy and enjoy....Janet

Dear all - Here we go....you all must be sleeping...so it looks like you'll miss posting #500.

Here I come!

Gayle :)

#500 - Yippee!

And my recommendation to any of you with head colds....try Afrin...it really works!

Gayle & Lou

Dear All, and in particular
Fundraiser, Janet, Ally, Sharon, and Gayle.

Firstly Gayle, congratulations, even if you did cheat with 2 one liners!

This morning I went to Worthing for my normal 3 weekly blood test and consultation.

Counts, Hemaglobin 10.6, (OK) White Cells 20 (much too high)
Platelets 25, (much too low) He increased my Oral Chemo from average of 750 mg per day to 1000, per day, and wants to see me in 2 weeks (normally 3 weeks) and has already booked an appointment for my next blood transfusion, presumably because he has increased my Oral Chemo dosage.

I discussed at length with my Haemo the Drugs Trial, and he tells me, that he believes it is my best chance. Because this is an early trial (placebos are NOT being used) he has no idea whether it will work or not. However if this fails to do me any good, I can go back onto my Oral Chemo that I have been taking for over 8 months, which has been very good, and kept me reasonably well balanced, even if I do have pretty bloody awful blood counts. He tells me, I look very well, and am bucking the trend, but warns that things can turn nasty at any time. He is almost 100% certain, that if I do not win the National Lottery, no funds will be made available to enable me to get Azactidine. This drug gives a period of relief to 30% of those who take it. It is NOT a permanent cure.

I will be speaking to Kings College London tomorrow, and subsequently will decide. I would like a few weeks holiday before the trial starts if that is possible. Want to go travelling!!!!!

Good luck to you all, and many thanks for your comments thoughts prayers and encouragement. It is quite something, that since 1st February 2009, we have between us all written 500 postings. Very Very well done and congratulations. Doug should send out bottles of champagne, so if you read this Doug, just ask, and you can have my address. Electronic email champagne does not do the trick!!!

Christopher.

Chris....My thoughts and prayers are with you....thank you for all your replys, I never expected to hear from anyone about my problems, although I am not the one with MDS, I am the one who has done the research and keeping track of what my husbands blood counts are and what they are doing and when his next appointment is, so it is very helpful to me to be in touch with all of you....thanks...Janet

Hey all,

Just finished the 5th day of round 11 on the chemo. A message from the doc says preliminary results on the bone marrow test show the blasts are up but they didn't say how far. Instead of ever 6 weeks for chemo we're moving it to every 4 weeks.

Not the results we wanted to hear but just one punch this junk got in. I'll get the next two LOL. You all have a fantatstic weeked. I get my first blood transfusion on Tuesday so hopefully will have more fiesty stuff about me.

God Bless all

Mike

Hi, Just wanted to say hello, and so glad to have found this board. PLeaase see my other post about when dr's start treatment which has the info about my diagnosis. Sorry if I posted a question before introducing myself haha

Welcome, Elisha. I can't speak for anyone else, but I received no treatment until my hemoglobin fell below 10. Now I'm scheduled for Aranesp shots every 2 weeks, trying to get it back up to 10 or better. My other numbers are reasonable, so that's the only one that determines my treatment at this point.

Mike, I'm sorry to hear that you're going to have to up your treatment too. I've been fortunate enough not to deal with blood transfusions or chemo--so far.

Janet, we have other members of the group who are here because their loved one has MDS. Read Gayle's posts, for example.

So, Chris, next week is the big decision?

Dear Sharon,

Yes next week is decision time. TRied to contact the Drugs Trial Coordinator yesterday, but she was obnviously off for the day. Have a series of questions, but if those go right (AS I WANT THEM) THEN i WILL ACCEPT THE OFFER OF A DRUGS TRIAL. If not.....well I can always stay as I am, but with AML, you never know when the big infection will strike, or the present Oral Chemo stop acting. Basically, its a matter of taking each week as it comes, and living each as though it is the last.
Lovely weather today in the South of England, sunny and hotter than Spain. We never know what to expect, and MDS/AML is like that too, so I am getting used to surprises, good and bad.

Welcome Elisha, you are in the busiest discussion group on Daily Strength, I reckon, and we all want to support each other.

Christopher - chrisjb.

Hey all,

Chris you know your in the prayers for your decisions and the outcome.

I found out late yesterday the blast count was back up to 22% but the blood counts while still way low, are staying basically level so nothing critical, staying with the MDS diag, having blood transfuision Tuesday so shuld be a bit more perky again LOL.

The nurse counted it up on Friday and as of then I had 55 infusions along with 3 BMT's and who knows how many lab tests so we came to the conclusion that I am now offically in the pin cushion status LOL.

Have a great Sunday and week ahead everyone.

God Bless,

Mike

Mike, you are indeed a human pincushion. Sorry to hear that your blasts are still high. Question: First, I'm assuming that BMT means bone marrow tests (my Dr uses the term biopsy). Is that the case, and do you get knocked out for them? Or do you tough it out?

Chris, you said, "I reckon." Are you an undercover Amurrican? Or is that part of the British vocabulary?

Glad you're having cheerful weather while you wait. Ours is good also, but rain may be coming our way in a few days--again. I'm hoping that next Thurs & Fri will be dry, as I'm leading wildflower walks those two days.

Hi All

Wow......there are so many more people to say hi to! So its a big welcome from down under.

Unfortunately, the last time I wrote I was leaving to Brisbane to see my brother. Michael passed away two days later. I watched him take his last breath, something of which I will never forget. He was a true fighter.......it was his body that gave up on him, not his soul or mind.

I have taken away something quite special from the experience as I watched his body wither, I realised that I have to fight harder to get the treatment I believe we all deserve. I do not want my husband or family to experience this type of death again. I m unsure how I tackle this new goal of mine, but Im sure Ill find some answers from the Leukaemia Association.

Rachael

Dear Sharon,
Yes, "I Reckon" is part of the English Language, and if you remember we have been speaking it for years before you Americans started to spoil it.

Aussie Rachel, sorry about your brothers loss.

Keep fighting. Look under Google for Drug Trials, and research all the drugs that are available. I have found Hydroxycarbamide very good for 8 months, it is also known in some countries as Hydroxurea.
Good hunting

Today Sunday, another sunny day. Off to a farm park to entertain a 21 month old little boy.....not MINE!!!
Chris