I havn't been on here for a long time, if you remember my husband is the one with MDS and he is still holding his own. I had a grandson killed in an atv accident in 06, my mother died in 2010, and my husband found out he had MDS in 09, I have fibromyalgia, have had several sergeries in the last few years so feel like I'm on a rollercoaster, up and down...my husbands dr. in leaving and this has him very upset, not knowing who the new dr. will be. His platelets stay very low, his white count goes up and down. I first start on here when Chris was captain...I will alway remember his incouragement to me, because I was sure my husband was going to die and after my grandson and mother I didn't think I could go through another lose so soon. Birdmom, I'm so glad to see you are still hanging in there, I have checked in once in a while, a lot of new names and some I still remember. Take care everyone...Janet524

I've been looking back, some of my posts were 449,469 and 485, so I've been following some of you for a long time....Janet524

Well, Janet, welcome back! Is your husband hanging in there? What treatment is he on these days? I too lost my original Dr when he moved back east to care for his father. It's a bit disorienting because each Dr has a different approach.

You've certainly had your share of miseries, now it's time to have some better fortune. Cap'n Chris will always be with us. What a guy he was, a terrific inspiration to all of us to live life to its fullest. Mike is another inspirational crew member, altho we don't hear from him as often as we did before.

Crew, I leave Sunday for my next cruise & won't return till the 19th. I encourage all of you to support one another & please post more often, even if they're short ones. We want to know what's happening in your lives. Sharon

Hi Leaky Boat Crew, I thought Id check in and say hello.

Im still doing ok, though I still have to endure some heavy side effects from the Revlimid. The nausea is still relentless and the fatigue comes and goes, but I find if I exercise that the fatigue is manageable. I had some low red and white cell counts over a period of three months and thought the Revlimid had stopped working, but as it is with living with MDS, it bounced back to relatively healthy levels. I have been struggling with a bumpy red rash for over a month now, fortunately it seems to only affect my neck and face. I decided that Id take a couple of weeks off the drug to see if it was causing the rash. The rash disappeared thank goodness. Now I know it was the drug and not an allergy to a food or the environment. The specialists want to give me a decent break from the drug as they believe the frequency of infections and continuous side effects is having an effect my bodys ability to cope with the toxicity of the drug. The specialist believe I may have now achieved cytogenic remission, but want one more BMB before they allow me to have time of the drug.

In saying all the above I still kept up my Surf Life Saving and had the wonderful experience of surf boat racing in waves. I have to say the adrenaline made me feel really alive. In October I decided to lose a bit of weight (16kg), as I was sick of worrying about keeping my weight on for a BMT. Im keenly aware that I have been extremely lucky to have had access to Revlimid and realise that many others are not as fortunate with other forms of MDS treatments.

I still check in often to see how the Leaky Boat Crew are and am thankful that when I needed support that this site was here for me. Birdmom, Im sorry to hear that your CBCs are lower, and that you now need additional therapies to manage your MDS. You are one amazing lady with your constant support for all the new and old members of the Leaky Boat Crew.

Cheers, Rachael

Rachael, I'm so happy to hear from you. Sounds like you are dealing with a lot of issues but keeping your upbeat attitude. That's just as important as the drugs you take.

I'm off for a Mediterranean cruise today--Greece, Italy, & Croatia--with three longtime friends. I'll be back the 19th (if we can avoid earthquakes & rioting Greeks). Sharon

Hi
Thought I would check in and say hello. I'm now 15 months post transplant. Doing ok, but having some issues with Chronic Graft vs Host. Mainly skin related, but not too bad. A year and a half on all of these immune suppression meds isn't a favorite outcome, but they need to keep me on them until they can stabalize the GVHD.
I got to meet my donor. He is from Michigan and came out to CA for a week with his family last month. Like having a new brother.
I haven't been here for a long time and I hope all is well. Still miss the captain. He was my first contact when I was diagnosed a couple of years ago

it is good to see some old faces! nice to have the new ones too! although I hate any of us having to be here. I am still hanging in there. the grief started hitting me the other day. totally unexpected on that one! maybe now the healing will continue.

Hey everyone,
Its been awhile my I have really missed you all and been praying for each and everyone of you . My mom is hanging in there her transfusions are becoming more frequent every 2 weeks now the doctor says she thinks she has had it for at least 6 years so she has beat the odds yet she is living on borrowed time so we just are living and preparing , they took her off vidaza and she is on a pill now that she has to take daily, has anyone ever heard of this and could you explain and could someone who has experienced losing someone to this disease explain the last stages ....Thank You continue to pray for me as I pray for you.

What is the name of the pill that your mom takes every day?
Millie

The pill is named thalomide

Hi everyone
Looks like this is the week that everyone is checking in! I am still doing very well on the Revlimid. I don't really have any side effects other than a lower white blood count but even that is in the normal range- hgb-14.3 WBC-4.2. Platelets-255 The doctor's are stunned at my remission as remember my HgB was 5.5 when I was diagnosed, with a marrow cellularity of 100%! (normal for my age is 55-65%). I am now at 55% with no signs of the disease in my marrow. Of course I want to come off Revlimid to find out of I am I'm a real remission or is this just some medicinally induced remission but the doctors want me to just give it a bit more time as it is not even
2 years yet. I am 38, so the thought of taking Revlimid for the next 50 years can seem a little daunting! Of course now that I have complained I will stop because I am very lucky and I know it. I want to just thank all of you for being here as you keep me grounded (even though you don't even know it!) You are all in my prayers every day and I am so happy to still be a part of this leaky boat!

HAs everyone heard about Robin Roberts from Good Morning America being diagnosed with MDS well now it will be in the news and bring some awareness .

I didn't see her on TV but read the article. It would be interesting to know if she had treatment first and if it went into Leukemia. We do need more awareness for MDS so it always helps when someone in the news is diagnosed. At her age she should do well and to have found a match in the family is an advantage. Still sad when you hear that someone else was diagnosed.

Yeah it is sad I twitted her the link to our support group here I know it has given me comfort maybe she will check us out one day.

Jon, it's wonderful to hear from you. I'm sure everyone would like to know a lot more about life with immune-suppression drugs after a BMT. A BMT is not an option for me, but we have other young whippersnappers here who would be interested.

What a great thing to meet your donor! I've even wondered about the folks who contributed their blood for my xfusion. I feel related! Strange that when I used to give blood, I never thought about it that way.

Yes, I too still miss our captain. Whattaguy!

Tecia, I hope someone answers your questions. Maybe Posh is a good source as she went thru her dad's decline. The drug you mentioned is thalidomide, the infamous one that caused so many birth defects many years ago. I'd heard that it was being used again with more precautions for pregnant or possibly pregnant women.

Jeannine, your news is so wonderful. You are allowed to whine a little, just like the rest of us, even if you're one of the lucky ones.

Mike, I hope you are reading our posts & will let us know how you're doing.

I must add my own good report. Got back from my Mediterranean cruise yesterday & my blood count is stable. Hgb 9.5 (up a tenth). Interestingly, my WBC has risen since the xfusion, now in normal range (4.9) for the first time since diagnosis. Not sure what that means, but I'll find out early next month when I see the Dr. Platelets are rising too, to 287. I climbed a lot of stairs & did a lot of walking for strength, & ate like a pig, but didn't gain any pounds. I'm not yet adjusted to the time change, which is 9 hrs.

Meanwhile I can concentrate on having cataract surgery on my left eye next week. Sharon