Jules, that is great news. Also glad to see Chris is posting again and feeling better. Went to the doctor yesterday, hemoglobin was 11.4. Not bad, actually feeling better. I did have an iron infusion treatment still and we will bee doing one every 4 weeks. Other than that, life is good. Enjoying the days even though Atlanta is very hot already.

Sending good thoughts and well wishes to all.

LaDawn

...........another day older and deeper in debt.........but still going strong......and we are having sunny days.....though it is often sunny first thing, and then clouds over....probably those damned Icelanders and thier Volcano...c'est la vie
Cheers
Chris

Feeling very disappointed after my specialist appointment. I have my first blood transfusion tomorrow. Specialist has talked to the drug company and I maybe able to get Revlimid at a cost. Dont want to get my hopes up so Ill only celebrate once its all confirmed. I hope Im one of those who really respond to the drug. Looks like I maybe on it within three months. There is a lot to be organised medically before Im allowed it. I also have to have a Bone Marrow Biopsy; I really hope my cytogenic result has not progressed. Im a little nervous about tomorrow, but Im comforted by the fact that the Red Cross does such a good job with screening blood.

Jules Ive been thinking about you and your BMT. Its good to keep positive. Now I only have to take my own advice.

Rachael

Good luck to all....things still going good here, even with all my ackes and pains, my husband is busy planting his beloved garden and flowers, hope his blood work stays good all summer so he can take care of all this stuff... Janet

AussieRac, I cried the first time I needed a blood transfusion. Asked the doctor what would happen if I refused it, he said he would be scrapping me off the floor the next morning due to being so weak. So, reluctantly I had the transfusion. As far as the bone marrow biopsy goes, I've had two so far. One under sedation the other not under sedation. Prefer the one under sedation. Count your blessings and good luck tomorrow!

When I had my first transfusion a month or two ago I had feelings from stuff I had read on the net that this was tail end type of treatment but the doctor(s) and nurses that I have come to trust of the past few years with this junk assured me that it wasn't anything near that, only something to give me strength and additional ability and feeling better while we fight this thing.

It appears that it takes sevear donors to make one unit of transfusion. I'll never know who they are but am thankfull for each one. They must have been a pretty good bunch of folks as I didn't have any adverse reactions.

I go for the second transfusion Tuesday so I can get fired all up for going to see our new grand daughter and our grand son oh and yea their Mom and Dad too LOL.

Have a great weekend all. Join me in amazement and gratitude to the Big Guy, however you address Him, for all the technology and resources that help us keep going while we all fight this junk.

Mike

So Jules has settled her BMT is to be in Melbourne, La Dawn has a good Hemoglobin reading, Rachel is to have a blood tranfusion to day, mike next week, wowo, what a busy lot we are.

I am waiting for my next blood test and consultation with my haemo on Thursday 27th, and will then see whether we are to travel to South America in June.

All seems to be moving along nicely, and chewing gum is being used to keep the leaky navy afloat.

Good sailiong all.
Chris.

Hi everyone. Sounds like it has been a tough time this week all round! Been a bit of an emotional rollercoaster for me this week. Sorting out the practics of my BMT. Take care Mike and Rachael... you'll feel so much better after the blood of life! And thanks heaps once again, for your support everyone. "Chewing gum" is very useful thanks!

~ Jules

The Creator's Heart

Precious cocoon
woven by My hands
blowing gently
in the breeze...
safely set aside
for Me

to change,
perfect
in the image of Me.

Strond winds will come
to break the life-line
between us both;
please stand strong
and listen real close to Me

and change,
perfect
in the image of Me.

Tattered are you,
worn by the storm...
you're still in my sight
always;
unconditional.
Trust Me

and change,
perfect
in the image of Me.

Precious cocoon
woven by my hands,
blowing gently
in the breeze...
safely set aside.

Perfect... for Me
in the image of Me

... butterfly.

Jules, your poem brought tears to my eyes. Good job!

I've been out of state for nearly a week, & the first thing I wanted to check was the condition of our leaky boat. Relief! Everyone is still fighting.

wishing everyone well this weekend. someone mentioned feeling that with transfusions starting is the end.....I think you still have lots of time.
My Dad has been having lots of them since December but he was not diagnosed at the time. March he had to have 8 units. He is averaging 1 per week at the moment but his other numbers seem to be holding steady but lower than the norm. My prayers for you all is a complete healing!

Dear First Mates,

Two things happened yesterday and today. Yesterday, Friday an email from Kings College Hospital London, and an appointment on Weds with Professor Mufti, re the letter I wrote following the total cockup of the invite to join a drug trial for Panobinostat. We will see what the Professor has to say about things.......Please wait.

Today a call from the Haematologist at Brighton County Hoswpital, they are running a Drugs trial, for which I am suited apprently, and the Haemo has invited me to visit him on Monday afternoon to discuss. Interesting.......Please wait.

So Capt'n Chris sails on........

Read my log, as next week progresses, should have plenty to report.

Sunny day, ah summer is here, but for how long?????? Your guess is as good as mine.

Jules thanks for the poem, you are a poetic angel, and angels fly though life, as you will fly though your BMT.

Chris.

Hi Rachel,
I thought you might like to know that when I was diagnosed this past April by my doctors at Sloan Kettering in N.Y., they decided dramatic results have been found on documented reports about the drug lenilidomide (Revlimid). I began taking 5mg of this drug for about 7 weeks now. My count went from 8.8, to this week, 11. It is working so well, they may let me take it every other day. There were some side effects, but nothing so bad that I would have stopped. I am very lucky to feel the benefit of this drug and I pray it will be great for you as well! I also have received a grant from the drug company which Sloan had applied on my behalf. Please feel free to ask me any other information you need on this drug and my continued results.
Sincerely, Adriane ( Fundraiser)

Hello shipmates

summer is here and I am holidaying with family (mum, dad, sister and bro in law, my wife and wee dauhter). We are in the New Forest in England and thus far the weather has been amazing. My wife (Maxine) and I drove down and broke the journey in Oxford where we stayed in an old jail that has been converted to a Hotel. It was very nice but my daughter Jessica keeps asking in a VERY loud voice 'why were you in jail Daddy' resulting in some very strange looks.

The good weather really does make everything seem that bit better. I hope that we all experience some smooth sailing and that everyones transplants, transfusions, vampire visits and general resilience go without a hitch/remains strong.

Captain Chris, clearly word of your important leaky boat related role has spread and our new 'condem' govt is offering you the full selection of trials! I will await your next update with my fingers crossed.

In the meantime shipmates stay well.

Ally

We are back from Florida, leave for MD Anderson on Wed. and the hopefully home for a while. I have a bone marrow aspiration on Friday and doctor appt. on Fri.
Adrienne.... Is Revlimid chemo or just hemo booster like procrit? Sloan Kettering was my 2nd choice for a 2nd opinion but I ended up going to MD Anderson in Houston, Tx. (from Illinois) as my sister lives in Texas. Is your main problem low hemoglobin? This is my problem area at this point. I am currently on Vidaze (oral chemo) and it appears I need to have a transfusion about every 3 months. I have had two and really don't want them that often, but my blood counts get to about 9 or so and I am so run down with the heart palpateions, etc. I can't take procrit with the chemo because I am on a clinical trial for the oral vidaza. Let me know where you are at with MDS. I have MDS/CMML which is a subtype of MDS (chronic mylocytic luekemia). I am currently stable and white cells and platelets are ok.
Chris....I wish you so much luck, as we all do, with your (hopefully) new treatment plan. Pleas know that I pray for you and wish you the best. This goes for everyone who comes here.
Summer has hit us full blast and it is 93 degrees today. A week ago we had the furnace on.....Only in Illinois.