I feel I qualify as a Leaking Crew Member after reading a good number of the earlier messages. I know that it wasn't necessary and It's not that I didn't have anything else to do but spent a few sleepless nights. I found the messages inspiring as well as
educational.

I guess I was nave 2 years ago when I was diagnosed with
MDS with Tri Somy 8, same as Chris. I think we are the only two. As I said in an earlier post I didn't qualify for the trials at National Institute of Health. Age was one factor, their cut off for that particular trial was 73 and I had already passed. They sent me home after a day of testing and said I could come back if I got sicker. My Hema said I could received the same drug but it wasn't covered by
insurance. I'll have to ask what that was.

We concentrated on Hemochromatosis...another issue I was dealing with but that is now pretty much under control with Exjade. HGB started to drop below 10 about Nov 2010 and shots of Aranesp every two weeks failed to stimulate the bone marrow. I had a 3rd BMB.

I'll return to the Hema Doc the middle of Sept after 6 weeks of Danazol. However, I do feel I can now ask more intelligent questions. I have to believe the risk factor is up there or he would not be thinking of chemo. The only thing he said was this is serious business. We just didn't ask how serious. I was trying to concentrate on the current course of action and figured I'd deal with the rest 6 weeks later.

I am grateful to all of you who posted over the past year. It gave me a better understanding of this disease and what to expect. It's not that I expected life to be more long-termed versus short-term. At 75 I've pretty much crossed everything off my bucket list. We do like to travel but unless things change, doubt there will be any more trips to Italy or the Greek Islands. We do have a cruise schedule to Canada leaving out of Baltimore in Feb, no plane travel involved. Just not sure if I'll be in the middle of Chemo. Cross that bridge when the time comes.

I do feel this is a wake up call to put things in order and spend time with my family whenever possible. I plan to take one day at a time and enjoy each day, whatever it offers. This journey isn't easy but it's the people we meet along the way that give this journey meaning.
I thank all of you for being part of my journey.
Wishing every one the best. Hugs.

Hey there Becky.

On the leaky boat crew member your one of us and we're delighted. They did let me in so it is a pretty good bunch of folks to put up with me like they do.

As for wake up calls, and bucket list heck the healthiest person around should be watching the news and spend more time with their families and friends. As for your bucket list, keep adding to it. Every day your feet hit the floor means the bucket isn't at the bottom yet you know.

When it comes to traveling and chemo, my Mom did it the last two years she was with us. When chemo was due or she needed a blood transfusion, she would just co-ordinate between her oncologist and the local facilities and go there to get it done. Obviously you have to use some extra care as to your timing vs the places your in. As for planes they do have masks that work pretty well on keeping the recycled germs at bay.

Don't let this thing get you down. Every day is a new opportunity for treatments and for us. Just look at the one they announced last week where the three terminal folks had their white cells extracted and a modified safe HIV product added to them, put back in and two of the three are in full remmission with the third at a large percentage improvement this after nearly a year.

They told my Mom she had only a couple of months to live and she should go home and wait. Not Mom LOL> She and my brother got on a plane for Hawaii and Tahiti, were gone for three weeks, then she flew out to WVA and spent many weeks with us, and continued to do it her way for another couple of years. Bottom line do this thing we have on your terms (just like Cris did) not on it's terms.

Anyhow we love having you as part of the gang. Have a great weekend, smile and have some fun.

God Bless,
Mike

Hello all....I have MDS deletion 5q and I am now on Aranesp after revlemid doesn't work after 5 years. I am gettin the injection every 3 wks. I had my second shot on Friday. My wbc and rbc are better, but my hemoglobin went from 9.5 to 8.9. And my platelets are now 54.
Does anyone have any input on this? Blessings to you all...Sandra

thank you all so very much for the love and support. Dad's birthday was yesterday and I just could not make myself go to the cemetary. I am feeling pretty guilty about that one. my love to you all.

Hi, leaky boat crew!

Just got back from a family reunion in Texas. I wasn't going to go, then remembered not to leave such things undone, & checked my bucket list. Oh, how glad I am that I went & spent time with my sibs & assorted relatives! I shiver to think of almost missing this opportunity.

Posh, I hope your husband's surgery went well. I'm so sorry to hear that depression is setting in (I have lots of experience there, lol!). But your dad would be most unhappy if you grieve too long. He loved you & would want you to be happy and live life to its fullest. My daughter still gets emotionally caught up in the anniversary of the deaths of her father & brother, but most of the time she goes on with her life full-speed. I hope you will too, & find joy in each day.

Mike, your mom sounds like a terrific gal. I'm certain that I would have liked having her as a friend.

Becky Jean, apparently you're on a bit of a rollercoaster right now. How much Aranesp do you get every 3 weeks? I'm on the max dose every 2. I'll see my oncologist Tues.

Hi Birdmom, I'm glad you had a fun trip. I've pretty much crossed everything off my bucket list. I do want to make one trip to SF to see family while I am still feeling decent.

Actually it's Sandra that is on Aranesp every 3 weeks, I'm on 200mg every two weeks same as you. I go Sept 1st to see if the Danazol is working. Yesterday I had funny looking feet and no ankles. My feet and hands are beginning to swell. Had to remove my wedding band. I checked with the doc and he wants me to try to wait until we check the labs next week. In the meantime I should cut down on the salt. Actually it's the summer time when I eat more salt with fresh corn, tomatoes and cantaloupe. He may decide to lower the dosage of Danazol or put me on a diuretic. Other than that I'm usually pretty good.

I'm sure glad my appt wasn't yesterday, I would not have wanted to be on the DC metro when the earthquake was happening. I grew up in SF so was used to earthquakes but that was before BART. Actually I was in our garage with Bob and the car started rocking and I could hear dishes rattle in the kitchen. That was a first for me to be outside. We were only 90 minutes from the epicenter. It startled our 16yr neighbor boy. He didn't know what to make of it. We kept waiting for an aftershock but it happened about 8pm and the tremor was so slight we didn't know about it, nor the one that happened in the middle of the night.

Hope all is well with the rest of the group.

the hubby's surgery went very well. the disks were a little worse than they first thought but he is doing really good with his recovery and now I am ready for him to go back to work already lol.

birdmom thank you so much. I think about Dad constantly. today I was thinking how fast he left me that day. it was so fast I didn't have time to say goodbye although he died in my arms. I do realize that is where he wanted to be. mine and no one else's. he didn't feel loved by anyone but me and that is sad. Spend good times with those that mean the world to you. enjoy every moment. I am really working on that one. His birthday was Sunday. That was a very hard day but I am ok. learning to lean more on Jesus!

Birdmom....I am glad that you had a nice trip. My husband and I just got back from picking up two grandson. They live in upstate NY and we met them half way. We live in Michigan. I got so tired, that I wasn't much help with driving on the way home. I am running a low grade temp. which I do not understand. We got a motel with a pool and I was too tired to go swimming. I wish there was a home test that one can test their own hemoglobin. I am trying to hang in there. Sandra

One of the leaky boat crew wrote a while back about tiredness not necessarily being related to hemoglobin. If you're out there, refresh my memory. I never understand why I'm so very tired sometimes & not others, & I don't see correlation to Hgb yet.

Sandra, the low-grade temp reminds me of Mike's. Maybe he has a clue for you. I thought his was related to chemo, tho.

Posh, are you an only child? It broke my heart when you wrote that your dad felt loved only by you. No wonder it hits you so hard!

Becky, you're going from earthquakes to hurricanes in one fell swoop. I pray all will be well with you & yours.

Hey Birdmom and all the leaky boat crew.

Birdmom it's my understanding that fatigue is a part of the deal with MDS unrelated to hgb. Of course when the hgb goes down it adds to it. I notice that most by the ever increasing shortness of breath for even small efforts. I guess generally the MDS related fatigue is kind of like trying to run an engine on watered down gas. Chemo week obviously stinks in the fatigue area but there are times when I feel fairly good for a few days and a lot where doing much of anything, like blowing the leaves on the patios, or spending the day with Mama walking around stores will cause me to be pretty fatigued. I always overdo it when we go see the grandkids (though I'm sitting and resting more and more) and for a few days after getting home I'm pretty wore out. Hope that helps some.

As for the low grade fever they explained that it can come just from your white cell count being down. Mine runs between the mid ones and upper 2's. When it get's into the ones I sometimes get a 101 -102.5 fever. I call the oncologist and he has me start taking an antibiotic that I keep at the house. It typically drops after a day or two.

When I get blood transfusions I get a fever for a few days around 100 and real heavy night sweats. I usually have about 5 days of the body feeling like I have the flu or ongoing fever without the nausea. They are supposed to run the blood through an iradiation process to kill off any germs because of the low WBC. Not sure they did that last time as I"ve had diarehha for two and a half weeks after the last one.

Our prayers are with all the folks on the East Coast in the hurricanes path. Take care and stay safe.

God Bless,
Mike

birdmom I am the youngest of 3. 2 brothers. one was killed in January this year. 96 days before Dad passed. Neither of the boys would come up to visit very often nor call him. He told me on many occassions that I was the only one that really loved him. On Saturday night before he passed I sat with him while his wife went out to eat on her weekly outting with her son and his kids. He told me that night that he didn't think she loved him at least not like he loved her. to me that was so sad. just makes me think he wanted to be with me at that moment. it really gave me peace when I thought about it this week.

Mike, thanks for the clarification on fevers & tiredness. It would be good to know (I think) just what it is that makes us extraordinarily tired at times. I always guess wrong on whether my Hgb goes up or down based on that!

Posh, I forgot about your brother's death. It's a shame that your brothers were so neglectful to your dad. Family is so important.

By the way, Becky, if your bucket is nearly empty, you'd better fill it up again, ha!

For all those leaky boat crew on our list in harm's way from Irene, we all hope for the best for you.

We survived "Irene" in Maryland. Electricity out twice but restored. Just one of the shutters blew off the front of the house but no real damage. Neighbor had a tree down in their front yard and one of the roads was closed due to a tree across the road tangled with power lines. Not sure about the rest of the area at this time. It has stopped raining, still quite windy and hope we don't lose power again, the sun is out and going to be a beautiful day. Concentrating now on preparing for Labor Day weekend. Our grandson and family will be visiting from Alabama.
Have a great day.

Thank you all for accepting me in this group. You make me feel better. First, Mike, you have MDS. I have MDS deletion 5 q. These are different, I was told. My temp is 98.6 to 100. My wbc are normal, but my plateletts are low 54. I read online that one with a low platelete can get a viral infection which I do not understand why? I have been trying to drink plenty of extra water. Yesterday I slept almost all day and all night. If I have to sleep to feel better...that is what I will do. Went to church with grandchildren had a cake to celebrate our 46th wedding anniversary and out for lunch. I go to see my internist on Tues and will ask if he will run another cbc. Thanks again for your input. Blessings Sandra

Posh, death (grieving) can bring down your immune system. PLEASE take it slow and get your sleep and take good care of yourself. I have had lots of death in my family starting with my 12 y/o brother. I have worked with death and dying as a career. However, I now know that I had to take time to grieve when my mother and father died. Love and Prayers, Sandra