Posh
I'm glad to hear you and your Dad are having quality time together. That's the biggy now. As for his white cell count, those are almost normal. Mine have been in the 1.5 to 2.3 range for about a year and a half now. The biggest thing there is avoiding infections. I'm a walking bottle of GermX LOL and when I go to the docs they get me out of the waiting room right away (there's a bunch of sick people out there LOL). Other public places I just avoid those that seem not well and don't touch anything I don't have to. One of my docs good suggestions is to carry my own ink pen and if I have to use one of the credit card machine pens do the GermX right away.

Hang in there and keep those quality times going. They are good for both of you.

Blessings
Mike

Mike you are doing the decongen right? or however you spell that. lol would that make a difference in your counts? these past couple of months watching dad go platelet dependent as well as blood dependent is horrible to watch. a couple of month ago his whites were in the 6's I think.

Welcome nanojeano to the Leaky Boat Crew.
MDS is such an unusual disorder, one day your feeling bad and the next your ok. It seems you may have a lot of the same results as a few members in the group. Keep strong and keep in contact , because it really does help to ask the questions that tend to worry us and the ones we forget to ask our doctors about.

Just a quick update. I started my last cycle of Revlimid and have had brilliant results, they are; Hb 137 (13.7), RBC 4.36, WCC 4.0 and ANC 1.2 . Platelets are at 113, but this caused by the drug and is still considered ok. My Hb has been this constant for two cycles now. Next month I have a BMB and am hopeful that the 5q has returned.

Keep hope everyone, two years ago I felt lost... now I feel hope. I pray for all those researchers out there that they will find a cure for all of us.

Rachael

Posh, Mike beat me to it. Your dad's white count isn't that bad. Even mine is consistently 3.1 to 3.5. Must be other stats that you need to worry about. (Assuming that you must worry, which apparently you will even if it does no good.)

Rachael, I'm astounded by your numbers! You've come a long way, baby!!!

Hi Everyone-
I have not posted in awhile but I have been keeping up with the LBC (Leaky Boat Crew), I think we're big enough for an acronym! :)
My heart goes out to Lou and Gayle, but I am so happy that he was able to go so peacefully.
Posh, enjoy every moment that you have with your Dad. Hey is in my prayers daily.
Nanajeano- Welcome aboard. You will receive so much support here.
Here is what is going on with me. I have been on Revlimid since September. I started out on 5mg every other day. I was moved up to 5mg everyday. Finally in November I was moved up from 5mg everyday to 10 mg everyday. Since I started Revlimid I have been transfusion dependent (remember my hgb was anywhere from 5.5-7.0) My wbc have always been normal, as well as my platelets. No blasts have even been detected.
My hgb as of Thursday is....14.4!!!!!!! Yes, 14.4! My wbc which had dropped to 3.1 due to Revlimd is now 5.5 and my platelets are 255. My oncologist is ecstatic. Thursday's appointment was going to be my first appointment to transition me into the BMT. Due to my results with Revlimid my Dr. and the team that has been following me as well as myself, and my husband are all for putting off the BMT for a bit. Yes, a donor has been found! Yaaay. I am scheduled for another BMB on February 2nd and if the results come back showing that the scarring ( I also have MPN) that was seen in my last BMB in August when I was diagnosed, has since started to clear the BMT could be put off for at least a year granted that the Revlimid continues to work. I feel absolutely fabulous. I do tend to get bone pain, I now have high blood pressure, and it seems the Revlimid can cause rashes which I have but all in all none of this is enough for complaining. I take my licks and keep on ticking! Hahaha. My husband and I were planning on taking my daughter on a cruise, I have always wanted to go on one and he was very resistant, but being sick has had its advantages and we were planning one for after my BMT but since all of that seems to be quite a bit down the line, we are planning to go on a cruise in April!! Yippee. Fingers crossed my results from the BMB come back good. I am going to sign off now. I am always reading what you post and keeping everyone in my prayers. xxoo

Jeanine, your numbers are absolutely fabulous! It is so heartening to have some good news amongst the bad. Keep us informed as to what happens next.

I hate mondays! dad's numbers are not good. his white count went up alot since last week but right now still within the normal range but with everything else the dr says he may be transitioning into aml but she isn't worried about that as much as his plts. also his kidney function is down as well as his heartrate still being 28. Also we found out my husbands brother has esophageal cancer and has a feeding tube already. of course we can't get to him easily as he lives in Washington State. ahhhhhhhhhhh calgon take me away!

Posh, As always I'm really sorry to hear all your facing. Always remember the Lord will never give you more than you can handle. And the other side of this thing is that here or on some other group, someone will ask a question or need care giver support or any of a number of things and you will be able to call on all of this to help them. It's not very comforting right now but your going to make it through it all fine.

We're with you.

God Bless,
Mike

My plts were at 22 this morning, wbc 1.3 and hct at 22%. I sent the results to my onocologist and suspect he'll send me in for another transfusion we'll see. Pretty normal though for week 2 and 3 after chemo week.

Have a great week everyone.

Best wishes to all.
I've spent the last few weeks at a village here at City of Hope regaining some strength and movement following my 30 day chemo stay..
I'm back in the hospital as of yesterday and I have five ivs dripping including a 24 hour anti rejection and some antibiotics and some chemo.
On Thursday they are scheduled to do the transplant. We'll see what happens. Some people breeze through. Others have difficulties. The stay is likely to be six weeks including two weeks of not being able to leave my room.
Best wishes
Jon

mike yes hon I will make if ok. well maybe ok lol dad and I are very close. I love that you are doing well! hang in there my friend!

Thanks for the welcome Jenine and everyone. This group is a Godsend.

Wow - lots happening to our Leaky Boat Crew...I'm bailing as fast as I can to ensure your continued success at fighting this disease.

Lou was layed to rest on Thursday, January 20. I had a wonderful experience through it all. Since he was a retired police officer they provided a very nice service including a 21 gun salute, taps and a great service. The chief he last served under presented me with a folded flag and I've already purchased a box to display it in along with his badge and patches.

The Celebration of Life was fabulous including a great Hawaiian singer we know who sang "Somewhere Over the Rainbow" and "Amazing Grace" along with several other tunes. I was afraid I'd miss so much of the service that I hired a videographer to record it all for me to share with others who were unable to attend.

A very dear friend read the following poem during the service. I wanted to share it with all of you. It may or not be original...I just know it made me cry with happiness. Enjoy!

You can shed tears that Lou is gone
or you can smile because he has lived.

You can close your eyes and pray that he'll come back
or you can open your eyes and see all he's left.

Your heart can be empty because you can't see him
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember him and only that he's gone
or you can cherish his memory and let it live on.

You can cry and close your mind, be empty and turn your back
or you can do what he'd want: smile, open your eyes, love and go on.

Happy Trails Everyone - I'll keep in touch!

Gayle

Jon, at last the big moment is coming very soon. Doesn't sound like much fun, tho! Keep us posted on what happens because someone in this group will need information on what it's like.

Mike, I can't imagine platelets at 22. Apparently I have plenty. Want some of mine?

Nanajeano, tell us more about yourself & your particular flavor of MDS.

Gayle, I'm so glad you wrote & told us about Lou's service. The hairs on my arm stood at attention when you gave us that poem. Just yesterday a close friend sent that poem to me (she had lost a longtime, very dear friend recently). The author is David Harkins, a British poet & painter, b. 1958.

Posh, I was saving that poem for you when the time comes to pass. It says it all to me. Keep a stiff upper lip, girl.

Gayle thanks so much for sharing with us. I always love a celebration of lives we're blessed to share with each other. We hope you'll keep joining in as you have been. We like having you around ya know.

Jon hang in there my freind. It wasn't an option for me but it does sound, from what was described to me on the process, that your past most of the worst part and headed into the better part. Let us know how your doing please.

Birdmom- The platelets always drop in the second or third week after chemo then start back up. They did another cbc today to register me for the blood transfusion and everything had started back up from just yesterday except for the platelets and they dropped to 11. So just to be safe they are going to give me some of those to hold me over until they go back up. They will be back up to the 60's to 80's in a couple of weeks. Thanks for the offer though. The new port will be busy this week LOL.

Everyone have a great week and keep those smiles going. Those and our love and support for each other is what keeps this ole leaky boat afloat.

God Bless,

Mike

birdmom thank you honey! that is so sweet! and I love the poem and I think maybe I will print it out and read it at dad's services.