Lou visited the oncologist yesterday and he was feeling pretty perky....he guessed his hemoglobin was 10.2 and when the doctor said it was only 9.1 Lou started a nosedive. It's amazing how quickly one can fade when stats are shared.

9.1 is the lowest reading he has ever had. We're in a holding pattern for the next month unless he starts feeling worse. If the numbers rebound, we're fine...if not, the doctor will be changing his meds.

In addition to a low hg number, Lou hasn't been able to stabilize his blood sugar. His meds may need to be adjusted - we have an appt. to see his GP on Tuesday.

To be continued!

Gayle & Lou

Gayle, I had to laugh about Lou's reaction. It happened to me once last year, when I went into such a tailspin that I walked out without getting my shot. Had to make the drive again the next day.

I asked my oncol about transfusions. He said the trigger would be hgb in the 8s. He mentioned one of his patients who's been getting them for 3 years.

Rachael, I hope they get to the bottom of what's happening to you.

Hey all,

Gayle and Lou - it's hard to have the great outlook and have someone tell you reality is different. I'm as positive as you can get. When in the hospital this last weekend the nurnsing gang and support staff all were laughing and became friends. In the background was the reality for me and my wife that the counts, after 70 chemos, were not getting better. Facing the reality that I'm no doubt working toward the wrong end of this junk we have is not fun. This stuff takes precious time from us both in total and in the way we feel while we're here. The bottom line for that is to squeeze everything we can our of each minute. This stuff really sucks.

My daughter was in an auto accident yesterday. My ANC was so low I wasn't supposed to tleave the house. The doc's nurse told me to wear a mask everywhere, wash my hands lots of times and isolate myself from people. So there I was in an ER fully masked, constantly putting Germ-X on my hands if I even came close to something, same at the drug store to get her prescriptions. That and hiding in every corner I could find probably had me being glanced at by security LOL.

Tell Lou all the time you can put to doing other things that you like is time that your mind won't dwell on this stuff.

Mike

Thanks Birdmom & Mikeyti....we're working on holding everything together....and we're looking forward to fun stuff...like buying a new car (Chrysler 300), taking trips in our hot rod ('41 Studebaker) and hosting family from California for a visit in late September.

Gayle & Lou

Hello everyone,

Mikeyti, how is your daughter? Hope she is doing well and well worth the mask and sanitizer to be there for her.

I am doing okay. I managed to contract another bug. The lymph nodes in the side of my neck swelled terribly but no sinus infection or anything that was noticeable other than the swelling. Taking more antibiotics and awaiting test results. The swelling has gone down considerably with only 2 days of medication. I will of course be sure tot ake the whole 10 days worth.

Be well everyone.

LaDawn

Thanks LaDawn and hope your feeling better soon. I understand the antibiotic thing. On top of all they pumped in me in the hospital I am just today finishing the prescription they sent home LOL. I think I can clear a room of bacteria just by walking into it.

My daughter is doing better. We'er taking her to the ortho doc tomorrow and hopefully she'll get back to work after that. There is not much they can do but put it in a sling and let it heal on it's own so she has to tough it out for a few weeks.

Have a fantastic week everyone.

God Bless,
Mike

Mike...glad your daughter is doing better and you are taking care of yourself.
I leave for MD Anderson tomorrow for an appt. on Monday. We are driving and it is a 15 hr drive but will stay with my sister in Liberty, Tx. for a few days. I meet with the stem cell dept. again this month. MD Anderson called today and said one of my two sisters was not a match for a transplant. I was really disappointed but I have one chance left. I am also kind of bummed as I had my blood tested last week in Illinois, which I do every two weeks. I wasn't feeling too bad but my red blood count was 8.5. I had a transfusion July 1 and do not want it to go down this fast. I am not getting a transfusion yet and will see what the counts are at MD Anderson. I have been getting transfusions about every 3 months so I am rather down since it has only been a little over a month. I feel like this is the start of the MDS/CMML progressing. Maybe I just had a bad day. I think this roller coaster is going to make me a little crazy.

Thanks Susan,

I know the feeling about the blood counts and transfusions. I had two transfusions that were about a month or 6 wks apart then went to chemo week and was in obvious breathing problems so had transfusion during chemo, which was needed but seemed counter productive to me, then 2 weeks later, at the bottom of the chemo cycle it was down again so they gave me another one though not sure if count down cause of chemo or just the phase I'm getting into. Having some difficulties this week but nothing serious yet so will hopefully find better results next week for chemo week.

If my counts are still down at the four week mark he often will wait a couple of weeks which will put it at grandbaby visit time which he tends to wait til the week after....so we'll see.

Good luck with your upcoming appts and tests.

I apologize for only having read the first 20 pages and pages 81 to the present. I am sorry that Chris is no longer with us. By way of introduction, I previously started the thread about tetrasomies. I was given the diagnosis of MDS on July 27, after living with Multiple Myeloma since Thanksgiving eve, 1998 (see about me).
I hope your experience with MDS will be like my experience with MM.
This time it looks different for me. I am resigning from volunteer work to concentrate on learning about this disease and completing my part of my family history (I am the family genealogist and packrat).
As mentioned elsewhere I have previously taken Aranesp for quite a while. I have some charts of numbers vs treatment (can you smell an engineer?).
.. Ron

Hi everyone....I've been away from here for a while because I've been checking out treatment for AML here in the US. Like some of our other commonweath members, NZ's options for treatment are limited and I didn't get a sense of confidence from the Auckland Hospital. Last week I spent a day at City of Hope and have been accepted as a patient. Although I am 64, the specialists there are leaning toward agressive treatment. I'll know more this coming week. I have a different level of confidence and will now start fighting this thing, whereas when I was posting here before, I was looking for a little bit of regression. We'll see what happens. Things are more immediate now because the blasts are out of the marrow and into the blood.....only 2 percent.
Best wishes to all.
Jon

I haven't posted lately as I've had to strip my computer. I'm still in the process of putting it back together, but I have the important stuff done.

Jon, that sounds like good news.

Ron, thanks for posting. I'm interested in anything you can tell me about your experience with Aranesp. I've been on it for some time now, max dose shot every 2 weeks currently. I'm especially wondering how long it will be effective.

And how is everyone else doing during the dog days of August? Guess for some of you it's spring!

Birdmom, how long have you been on Aranesp? I have been on it since Feb 2007. Still working for me!

Zoe

In my photo album is a graph of the history of my Hematocrit/Aranesp treatment with time. It takes a while to build up in my system, and for the effects to wear off. I hope this resumption will kick in soon as I am requiring a bit of naps this time.

I wrote a blurb days ago, but apparently it disappeared. Saw the vampire yesterday, and he had a little statue of a vampire on his desk.

Hemoglobin count went up a bit this time, so I'm holding pretty steady.

My brother-in-law, who was diagnosed with ALL (leukemia) a little over a month ago, has kicked the bucket at 62. Sure didn't take long to do him in.

Welcome, Ron, to the leaky boat crew, and let's hear from the rest of you. Is no news good news? Ron, I'd be most interested in anything you have on Aranesp, which is what I'm on.

Aargh! Guess I hadn't refreshed the page, because my message is there after all. Welcome to you, Zoe, and I'm glad to hear that you've been on Aranesp that long. I think I've been on it for about a year.