Hello Granny Linda,
You have nothing to worry about, Intermediate 1, is pretty low, I started at Intermediate 2, 22 months ago, and I am still the determined difficult old goat, that is loved my our friends who post on New Member.!!! And I still live a full life.

Hello Crew,
Have not even started to think about our departure on June 17th. That is 9 days away. Been down to Salcombe in Devon for 4 days, at the invitation of my twin daughters who live in Hong Kong and Dubai, and wanted to give me, yet another brilliant surprise, as I only expected one of them, but they are devious. Only knew the second would be there when I got to Salcombe. Its a very special place to me, and my family, and really is our Spiritual Home, though not in the religious sense. Its a long way, 250 miles, but I managed the drive, though having got there Bursitis got the better of me, and walking was absolute hell.! Pain killers and wine kept me half OK, but only half,
Thursday is scheduled for blood tests and consultation, and collect drugs for a 2 month period, with a performance of Swan Lake at night at the Albert Hall in London, and Friday at 0830 hrs in to Hospital, the Day Care Unit, for 3 units of blood.
Saturday out for lunch at a vineyard, Sunday Church, and as Judith is working I will have the day to rest and relax, on my own.
Next week, we settle the packing. One little problem is taking lots of clothes to Colombia, as it is so cheap to have them altered there as against the high cost here, and really I have nothing that fits, every pair of trousers, needs 4 to 6 inches taking out of the waist, and jackets need 6 to 8 inches out of the chest. I have now lost a total of 35 kilos , ie. 77 pounds, so people are seeing much less of me these days.!
Still I am fit and well, and everyone seems pleased that I am managing on my Oral Chemo pills, and they are NOT to be changed unless they start to fail in their effect (which will happen), but when....no-one knows!!
So from the Captain of the Leaky Navy,
Salutations!!!!
Chris

Hi all,

Chris sounds like you manage to stay busy enough to keep three of our minds occupied. :-) We went last weekend to Waco, TX to see the new grand daughter...one good lookin little darlin there. Of course had to play and shope with the 2+yr old grandson most of the time. The drive down was terrible due to it being a holiday weekend so it too an extra hour to get there...abt 180 mile. Coming home was a breeze though.

Day two of chemo this week ---uuugggghhhh LOL. I finally let them convince me to leave the IV in and wrap it up. We'll see how that goes as I move my arm around a lot. At the end of this week it will be 60 of these treatments. The doc had originally pegged me at a low level MDS and now almost three years later says it has only gone to a very low intermediate level so haning in there. He doesn't like to use the numbering systems to describe it as they put all the emphasis on the blast count and some of the other reports when as he puts it with the MDS most of it comes from the continuing levels of the blood counts along with the patients general condition. Like you Chris, but only with different treatments, he says there is no reason to move to something else unless there is some radical change in blood counts or I start needing lots of transfusions. We're aware that it could take a turn to serious ugly any time but he doesn't see anything like that anytime soon. Of course I think it's harder on my wife than me. She takes my word for things, and I tell all there is, but she can't see what the impacts are. Well except for chemo week where I'm just ragged out until the next week. Very very blessed not to have the nausea, hair loss or other major side effects.

You better start packing Chris...it always takes longer than you think LOL. If I don't write again have a fantastic trip, load up on go juice at the transfusion factory and give it all you have. Sounds like it will be fun.

Have a great week everyone.

God Bless,
Mike

Granny, a big welcome to you. You will calm down when you discover that it's a very long-term thing for most folks. But it's good to research, & it's excellent to have a fine support group such as this one so that you can complain & laugh & talk to folks who know what it's all about. Let us have some numbers from time to time, as most of us do.

I'm so pleased to hear that our captain is still a determined (& difficult) old goat. One of these days, Cap'n, you must let Judith write to us. Ah, the stories!

You must post a more up-to-date photo now that you've lost so much weight. Although, I do love the one you use.

Saw my oncologist today, & he said my hemoglobin was 10.2--down a bit from the last two times--but still....above 10! So, every two weeks on Aranesp is working so far.

He asked for a reading on my Vitamin D count (he put me on an extra 1,000), so I gather that Vit D is becoming more important to this disease. Are any of you experiencing the same encouragement? I told my Dr that I spend a good deal of time in the sun (natural Vit D), but he said that it doesn't necessarily mean that I absorb it. Hmph.

The cancer center was full of folks today, some very thin, some on chemo, some losing their hair, others on oxygen, one with a barf bag, etc etc. It's kind of sad to go in & see how much worse other folks have it. And then I think how lucky I am.

I had a fall yesterday, which I seem to manage about once a year. One minute I'm upright, the next I'm prone (not to argue). This time I was acting like I was 17 instead of 71, so it's my own durned fault. But I wonder about my balance. I'm trying to get it better with line dancing, but that's exactly when I had the latest tumble. I swear--tomorrow at line dancing, I will act my age. Not as much fun, but less pain & damage!

To add to my senility, I also ordered hearing aids today (I'm borderline), so I have new experiences to come in about a week. I would be most pleased if the aids decrease my tinnitus. About a 50-50 chance.

June 17 is only 9 days away, Chris. Like Mikey said, better start packing. I'm thinking of going to Amarillo, TX, in late August for a small family reunion with my stepdad & 3 of my siblings. Don't like Amarillo weather in August, but the company's great! At first, I thought nah, but you know? How many chances will I have to be with my family during the next few years? So, I'm leaning.................

Thanks Chris and Birdmom for the welcome. Be careful of that line dancing, Birdmom, it could be hazardous to your health! A few years ago I was going to show my little grandson how to jump rope. I was barefoot and when I jumped up and came down on my toes, they crumbled and I fell to the floor, breaking my toes. I'm just thankful I didn't break anything else. I have osteoporosis now, so I try to be more careful. Alas, no more jump roping for Granny! Chris, I have found that if I take jumbo Ziplocs and sit on them, it presses out all the air just like those vacuum bags you buy. Works great. That way I can get more in my suitcase and the clothes really don't wrinkle.
Hope everyone is getting good numbers ........

Hi All
Chris
I never responded to a question you asked awhile ago. It was in regard to the dizzy / fainting spells I was experiencing. I asked my specialist about this issue and he confirmed that blood pressure issues along with a low Hb would definitely be the cause.

Now that Ive had a blood transfusion, my blood results are erratic in nature. I still have a low nuetrophil count, but have had a strange spike (increase) in my results one week, and then it decreased the next. Supposedly an increase in my nuetrophil count indicates that my body is fighting an infection (whether I feel sick or not), once fought it goes back down to 0.8 1. My Hb went down to 80, but with one transfusion it went to 102, within a week it has gone down to 101. My guess (not educated!) is that I shouldnt need a transfusion for at least two and half months, especially if I only drop by one point every week.

Granny10
Welcome to the forum. I really feel both you and your husband. Finding out that you or your loved one has MDS can turn your world upside down. My husband after a year and eight months still gets visibly upset if we or others talk about it. We both felt physically & emotionally sick when we were informed of the diagnosis. I can promise you one thing, the better informed you are the more control you gain back. MDS treatments and its progression drastically vary between patients, so you need to really be careful when you navigate the information you see on the internet. Id ignore those survival rates too. Keep with the forum; everyone is at such different stages and it helps to have friends dealing with the same issues that you are. I really hope the Vidaza works for your husband.

Rachael

Granny10, Your letter really touched me, I to am the wife of someone with MDS, I know the feeling of being devistated, I thought he would die soon, it has been over 2 years and he is going strong....his counts go up and down, three times they have planned to give him chemo, and at the last minute the counts go up, so they postponed it. He is 75 and very active, plants a big garden, takes care of our big yard, has 3 steers so we have good beef to eat. So far the only treatment he has had is B12 shots. He has a blood test every two weeks, just to keep an eye on the counts. So hang in there, this site is very helpful, it is great to read about people that are going through the same thing. Looking forward to getting to know you better since we seem to be in the same boat....Janet

Hello everyone,

I am still here, I read the new posts everyday.
I went to my haemo last week and everything is stable. He isnt expecting much change and said I can go for years like this.

Birdmom, I have had my Vitamin D read as well, and it is low. my reading was 50 nmol/L. The range should be 50-300 according to my paperwork. So I now take a vit D supplement. This is the only thing i take at the moment.

Hope everyone is keeping well,

Deb :)

Dear Leaky Boat Crew Members,

Welcome to our group Linda - we all thrive on "new blood"....get it, new blood! We're also a rather "sick" group...well, just some of us are! My husband would say...sick in the head!

Lou has been working hard for the past two weeks to get his blood sugar down. His count was 478 on June 1 and now he's gotten it down to 221 just this morning. His general doctor ordered new meds and he's testing and tracking his blood sugar twice each day. We're just thankful he's been stable for the past eight years...since diagnosis of diabetes was made.

Now on to the good stuff...saw his hemotologist yesterday and his count was 10.9...the highest since he started receiving Procrit injections. Yippee.

NOTE: Lou has opted to receive Procrit injections twice weekly even though he's been offered a different longer lasting option....he LOVES all the nurses and enjoys bringing a smile to their day....we often make a plate of fudge for him to take in too. So, twice weekly trips for injections obviously don't disturb his day! :) The trip is luckily a short one, what with the cost of fuel these days.

We're planning a few trips: Hot Rod trip to Washington in 1 week; Las Vegas in July (they offer a non-stop from Redmond, Oregon); Hot Rod trip to Salem in August; and Hot Rod trip to Arizona in October. Not sure if the '52 Chevy will be ready to run...but the old '41 Studebaker can rise to the occasion.

Chris - we're excited for you and your upcoming trip.

Birdmom - sounds like your trip to Texas is just what the doctor ordered...family is key for all of us. Just watch YOUR STEP!

Deb - great to hear from you again!

We hope everyone stays well.

Lou & Gayle (Bend, Oregon)

Hello Crew,
Pleased to tell you that after my consultancy following a blood test this morning, everything is about normal for me, still holding my own, and all the Haemo did was increased my Hydroxycarbamide to 2 pills on Mondays to Fridays and one each Saturday and Sunday.
So he reckons with a transfusion of three units of blood tomorrow, Friday, I will be fit to fly on the 17th June.
Got a whole bag of pills and potients to fill up one of my two suitcases for the trip.
Feel OK.
But will be ecstatic in one minute if I also bag slot 700. Hehe Gayle. Bet you are still asleep.!
Love Chris.

So here I am again. We have managed 700 postings since February 2009. Not bad eh? CONGRATULATIONS TO ALL, NEW AND OLD, SICK AND WELL, DIFFICULT AND CRAZY, leaky boAt members,AND OUR SUPPORTERS.

i AM JUST ONE EXAMPLE OF MEMBERS OF THIS GROUP, WHO ARE ALL DETERMINED TO HANG ON A BIT LONGER. Yes determination pays. After all, I was scheduled incorrectly to go in November 2009, then February 2010, and still I am around, (though much less round) since I have lost so much weight.
My advice to all is simple. Just hang on, be optimistic and enjoy life.
And....never trouble trouble, till trouble troubles you.
Love to all Chrisjb.

been awhile since I have been here. lots going on and none of it good. My Dad's sister passed away rather suddenly and Dad has really gone downhill since that time. His last transfusion really didn't do alot for him. his count went from 7.3 to only 7.9 He is very weak now. He opted not to do any treatments other than the transfusions. I don't think he will make it to 81. Keep us in your thoughts please.

My congratulations to you Chris...our Leaky Boat Captain...on securing Post #700. It is quite a tribute to your "determination" and yes, I was in the shower this morning when you snagged the premier spot.

Alas, who will get #750? #800?

Lou and I check posts daily and enjoy hearing from all of you. Your lives and activities are certainly interesting but how each of you face your MDS obstacles gives us hope and strength to be strong for whatever lies ahead.

I really believe there is strength in numbers...and through the ebbs and flows...our numbers are rising steadily. Congratulations to all of you (us). :)

Lou & Gayle

Went for our second opinion today at Emory in Decatur, Georgia (USA). This doctor was a "glass half full" type of guy and we really liked him. He didn't say too much different than our regular oncologist but did say that there were other treatment options if the Vidaza didn't work plus clinical trials. My husband seems to have a chromosome abnormality that is not usually seen in MDS patients (in fact the Emory doctor said he has never seen it before except in AML which my husband does not have yet and hopefully won't have for a number of years if ever).
So we are going to stay with our regular oncologist for treatment and see the Emory doctor in 3 months at which time we hope the Vidaza will be working. He is to have another BMB at Emory a few weeks prior to seeing the doctor.
So, considering everything, I think we feel better than we have since diagnosis. Husband seems to be doing better and I'm working on getting him in that positive outlook mode.
Thanks to everyone for all the kind comments and support.
God bless all.
Linda

Poshshorty...you are in my thoughts and prayers with your father. As long as he is at peace with his decision, I think one needs to honor his wishes. I think we all come to the conclusion after the denial and anger that we can accept our demise although it is so difficult for the family.
This is such a great support group and I know I have enjoyed listening to everyone and their advice and comments to help me cope with this rare disease we have all been diagnosed with. At this time the doctor said I am stable but there are times when I just don't have the stamina I feel I should have with being "stable".
Chris....you are such an inspiration to me since you have the AML and keep on going as strong as you have. You are our energizer bunny.

Poshshorty, you & your dad are definitely in our thoughts & prayers. I think most people "know" when their time is coming. Sounds like your dad is in that position now. His weakness prevents him from living life as it should be lived, I imagine. But 80 isn't such a bad age. I'll be grateful to live to that age, & I'm sure many of our crew would agree.

Linda (Granny10), I'm glad you & your husband are feeling more comfortable with MDS now. At first diagnosis, we tend to go overboard with our emotions, but soon we have to settle in for the long haul, because it is one.

Susan, I know what you mean about not having the stamina you think you should have. For me it's the hardest thing to deal with so far. Most of the time I can't figure out whether it's MDS or age, or both, when I just can't do what I want or need to do. Especially because I feel physically strong!

Cap'n Chris must be resting up from snagging #700 and packing his bags.