Hi LaDawn,
Glad you enjoyed day with family which I know you feel is so very important. It's also good that you have a chance to rest. I do hope they will consider those treatments soon so you can keep your strength! As of last Thursday, I just began my treatment of Rivlimid, 5mg, 1x day.So far, thank God, no known side effects!!!
I will be watched every week for 4 weeks
to make sure all is well.
ALL WE CAN DO IS KEEP GOING FORWARD.
fUNDRAISER

Woohoo! It's getting harder to keep up with the posts, which is rather nice in a strange way.

About gardening, I didn't like to hear that it's not a good thing to do. (It's one of my major activities.) What's worse is that I'm a bare-hands gardener, can't stand gloves unless I absolutely must for protection against thorns or stickers.

I see the vampire & the oncol tomorrow afternoon, so I'm going to ask his opinion on this question.

Hey all,

In Chemo as I write. Have PC going, CNN on, have had BMT taken. Blood counts this time WBC 1.8, RBC 2.27, plt 89. While those sound low and are they have been fairly steady for some time, raising and lowering at different times. Doc says all ok as for anything serious going on. We are going to do first blood transfusion next week, not because of the counts just to help with the shortness of breath.

Should have preliminary bmt results later this week, i.e. blasts etc.. We talked about the meds a lot of you in UK are taking and he had told me before that he is able to use quite a number of drugs like dacogen and many others that NICE won't approve for you and that's too bad as they do so much more.

Any how the beeper just went off meaning I can get out of here so will chat later.

Mike

My mum loved gardening, it was the one thing that she found energy for, would sometimes spend the whole day out there, she never wore gloves very often, unless I nagged her to do so, she never had any problems with infections or bacteria from doing so.

Best wishes everyone x

I'm very interested in this talk about gardening...My husbands Dr. told him no gardening because there are spores in the dirt that cause infection and if inhaled could be deadly...gloves would not help and even a mask would not help, NO GARDENKNG! So will be interested in what others have to say about this...Janet

Hey all,

Home now. Sorry I forgot with the BMT and everything else going on to ask my Doc about working in gardens and stuff. If anyone finds out please let me know and if I can remember I'll try to remember when I talk to him at the end of the week.

Have a great week all. I'll be a pin cushion all this week and part of next, plus have a death in the family but will try to check in just to keep reminding my ole forgetful mind to ask the Doc.

Mike

Hello everybody.

I am new in here. Got very bad news from the doctor a few hours ago. Worst case MDS with akutt leukemi. Hospital and heavy chemotherapy is the next step. I`m in shock right now...

Maybe I can look in to this site from the hospital, I can bring my pc.

Anyone in her who have the same diagnosis? Been through heavy chemotherapy?

Sharon,
Glad to hear you are to put your consultant to the test. Will look forward to hearing the result on gardening.
All well here, just done a day in London, day with nothing to do tomorrow, and blood test and consultation with Haemo on Thursday when I shall be probing on what alternatives there are if my Oral Chemo stops functioning, so that I can weigh up the advantages and disadvantages of the drugs trial.
Will advise as usual.
Chris.

Welcome to our little family, Siriann. Sounds like you have the bad luck to be in a high-risk group. I'm sure all this is overwhelming to you, but you will have some things in common with some of our family here. Please ask questions. When I was newly diagnosed, I searched the web a lot, even tho my father had the disease too. (I didn't pay a lot of attention then.)

New drugs & treatments are coming available all the time, so please have hope in your heart, & as Chris would say, determination in your soul. He has acute leukemia, too, so stick around & learn from him.

For myself, I'm in a low-risk group, so I expect to hang in for some time to come. My hemoglobin went down slightly this time (9.6), & my oncologist would like to see it over 10, so he asked if I would come in every 2 weeks for my shot (yes, that's what we Amurricans call them), rather than every 3 weeks. (I started out every 4 weeks.) The trick is whether Medicare will pay for Aranesp that often, so it's wait & see.

Now to the gardening question. My Dr assured me that I don't have to worry about that; it only concerns those who are receiving chemo & therefore are at higher risk with their compromised immune systems. I breathed a big sigh of relief, because gardening is my mental salvation. Sueglove, your mum & I would have gotten on well.

One thing I like about my Dr--he is big on quality of life. Forget the numbers & live the life you want, is pretty much his motto (he's from India, so that may explain his philosophy).

Chris, I'll be very interested to hear what you choose to do. Do you think Thursday will kind of nail it down for you?

Sirian, I'm sorry to hear about your diag. I've not been through that myself so can't give you any good info. Know that we're here with you and your in our prayers.

On the dirt issue I did find out today that the folks here say much the same about dirt but say it's ok to garden as long as you wear good gloves.

Saw some good friends and shared a bunch of good smiles today at chemo. I'm sure I'll see some more tomorrow as most folks don't come in for 5 days in a row like I do.

Later all have a great day tomorrow.

Mike

Dear All,

Had a copy today of a letter written by the Consultant at Kings College, to my GP and my Consultant at Worthing, who I am seeing tomorrow.

He says, and I quote" I would be most grateful if you would be able to arrange fro him to have an ultrasound scan of his epigastrum to ensure there is no significant pathology. I have given him an information sheetfor the Panobinostat study in AML, and if he would like to participate, we will arrange a screening bone marrow up here at Kings. The ONLY other option would be to try and apply to your local Primary Care Trust for Azactidine. I will see him in 3 month's time, but if he decides to participate in the trial, he will contact us and we will make the necessary arrangemnts"

My thoughts are these.
1. If Hydroxycarbamise, which I currently take ceases to do me any good, which is a probability in time (could be 1 month or 18 months) Azactidine is the only option to going on Panobinostat. Not a very happy thought comrades. The likelihood of the PCT, who pay for drugs, agreeing to 45,000 to save Christopher does not seem very strong!!!!!

Blast, Hell, Damnation,,,,,,WHAT shall I do.??

Chris.

Hi Chris,
Myself, and many others will pray you get the help you need to keep going strong! I know we all agree, in any illness, bad enough to be sick, no less worry about if and when you can get treatment!!! You are in my thoughts and prayers that any treatment you need will be approved!
Fundraiser

Thinking of you and praying for the right answer....I'm sure we will have to make decisions on Mon. when the results of the bone marrow test comes back....till then...Janet

Hi Chris

I think you should go for the study. I am assuming from the content of your post that the Consultant still seems happy for you to participate in the study (as he states this will be arranged through Kings then they obviously see no issues to prevent this happening). Or am I missing something?

Ally

Ally has spoken my thoughts, but I'll add them anyway. Do we understand correctly--if you go on this trial, you have no problem with paying for the treatment?

As you say, the drug you take now could be worthless to you in as little as a month.

Now, if we have this wrong (about payment), then I'd rethink what I've just written.