Hey guys, I'm back from my cruise. Had a great time & did well physically.

Ron, I learned that there are two secrets for less painful Aranesp shots--slow is good, but warmed med is best. The gal who gives me the best shots takes the time to warm the med first, which means very little sting.

Gayle, when they do Lou's stress test, will they make him do the treadmill, or give him the med that acts like he's done that? That's what they did to my husband last time (so he wouldn't have a heart attack on the treadmill!). Glad the tournament went well, & hope Lou's tests have a good outcome.

Jeanine, how exciting for you! One way or another, you are closing in on a BMT.

Pat, I hope the Aranesp shots work as well for you as they do for me. They've given me a second lease on an active life.

Mike, you certainly cope with the time spent on treatments in a very positive way. Most of the folks I see on my visits do nothing but sleep, so I guess they don't feel well enough to make that time count.

I see the vampire tomorrow, & as I had to go to 3 weeks instead of 2, I don't know if my count will hold. But I feel very well, so we'll see!

It's not that much about coping as making it all count. I'm in chemo now and with one of the nurses that I have the most fun with. We manage to keep a few folks around us laughing. WBC is at 1.6 today but RBC and HCT are up some. Though I'd rather visit with the doc and his nurse under different circumstances we do have fun and enjoy the visits. I do the on in Dallas today then the next four days out by home - only 8 miles instead of 60.

You all have a great week and have fun every chance you get.

Mike

I think Ill have to redraw the old fishing boat into a cruise liner to be able to include all the past and new members of this MDS thread.

On Wednesday I participated in a MDS telephone forum. We had a Haematologist as a guest speaker, who also happens to be a MDS specialist researcher and has worked on various trials over the last decade. Its such an exciting field, especially as they seem to be focused on trialling a combination of drugs. An interesting fact that the guest speaker noted is that the majority of people with MDS only ever receive supportive care and never get chemo drugs or the option of a BMT. The majority only receive transfusions.

If anyone is interested I have updated my journal. Revlimid is doing what it should, having both positive and negative outcomes.

Just a quick catch up the below participants;

Ron, It must be difficult not to have a definitive diagnosis. My prayers and thoughts are with you especially on Oct 5th. If you do have a diagnosis of MDS, I hope for your sake its one of the low risk forms of MDS.

Jeanine, Hows the Revlimid treating you? Have you had any news about a possible donor?

Lou, How awful to not only have a heart issue but an allergic reaction to a blood transfusion. I hope things have improved for you. Gayle I hope youve been able to get some rest. As a carer you must look after yourself too.

Patmatz, Welcome to the Leaky Boat Crew. I really hope that the Aranesp works quickly. Im sorry to hear that youre experiencing such pain. Two weeks ago I had a reaction to Revlimid and I couldnt walk because the pain was unbearable. At least that pain only lasted for a few days.

Birdmom, Im glad you had lovely holiday. I was wondering why the Aranesp injections hurt? Are they like B12 injections which are injected through the muscle mass? I would like to take a short holiday soon, in particular I would like to visit my Mum in NZ but I have to wait to my blood counts stabilise.

Mikeyti, I hope youre travelling ok and that the Dacogen is working. With a WBC of 1.6 do you have Neupogen injections?

I hope I havent forgotten anyone.

Keep positive and keep posting.
Rachael

To the question of neupogen injections I can't have those (I beleive that is the "neu" drug I'm thinking about) because while they increase the WBC count it also increase the blast count which I, on my last BMT, had a 23% level. Sure don't want any more than that. LOL. That was why I wrote awhile back to be sure all of us ask ask ask. The hospital doc was going to give me that drug based on his experience with cancer treatment alone and no knowledge of blood and leukimia disorders like MDS. My doc, when I called, was back to me literally with in a couple of minutes to tell me to refuse it and be very emphatic about it.

Sorry went on a bit but it is so important for us to learn all we can then ask lots of question and not let anyone give us a treatment or meds that may have an impact related to our current treatments without consulting our Oncologist first.

Have a great rest of the week and weekend everyone. Only two more chemo days left this week yea yea then another 5 week break. Grandkids coming next week....I guess they are bring Mom and Dad too LOL

God Bless,
Mike

Thanks Mikeytj for the advice about the Neupogen, I forgot that it was also called GCSF. I have read that it can increase your blast count. What else do they prescribe you when you have a low WCC/ Nuetrophil count? I have a great specialist who I trust and am sure he'll do the right thing. In fact I've already heard from him and he's not too worried about the nuetrophil count, just that I follow through with the general precautions if I get I fever.

Hi Aussie, The only thing I take is the Dacogen/Dectibine every 4-5 weeks. My MDS is considered high low or low intermediate. Tomorrows infusion will make number 85. All the blood counts that are not normal are printed in red so my print out looks like a Christmas tree LOL but is hold low but steady.

Hope that helps some

Hi there, Not sure if I am posting in the right place, and I don't mean to ignore your post, mikeyti, but I wanted to introduce myself.
My name is Caitlin, I am 58, and was diagnosed with MDS in May aftr a long struggle with falling blood counts during the past year. I was advised I needed a transfusion, and once they had me in the hospital, they decided I needed the bone marrow biopsy.
I am not on any meds. I had another transfusion a week ago, and they seem to work for me at the present. I'd like to avoid meds as long as possible,and even then, I will use extreme caution in my choice. I am reading some of the members' stories slowly, and I hope you are all feeling as well as we can feel with MDS!

You're in the right place, Caitlin. Welcome to the Leaky Boat Crew!

MDS is an umbrella term for many types of this disease, which are basically classified in three major groups (low, intermediate, & high). My own status is in the low group (yay!), and for the first year I was on no meds. Once my hemoglobin fell below 10, I was given Aranesp shots once a month, then every 3 weeks, now every 2. Aranesp is a manmade protein that apparently helps the bone marrow build proper blood cells. I'm not at the blood transfusion stage like many others of our crew.

You will learn that our crew is on many different meds, and that's why it's good to go back & read 936 messages (yikes!).

We lost our captain, Chris, early this year. He was a terrific inspiration to us all, but his messages are still here. What a guy!

Rachael, the Aranesp shots sting, but it lasts only for some seconds, at least in my case. I've never had a B-12 shot, but I suspect they're very similar.

Shoot, Mikey, you get your results in color? I'm jealous. Mine just say low or high.

How are the rest of you doing? Remember, when you post, you support our new members who need help just like you did when you joined. Hope to hear more!

Birdmom, You think you are jealous for no color in your labs. Shoot, I only get L or H. At least you get entire words. I didn't realize quite how poor Appalachia really was until I learned other places use enough ink for entire words.
I am really glad you are here. I love reading your posts.

Zoe

Ok I don't want to get all carried away with bragging and all but I not only get colors - red for no no and black for ok but I also get the last five lab reports all nicely lined up next to each other, and and and I get low and high spelled out along with > and < to indicate high and low. Oh and on the right side I get the norms for whatever the test/count is so I can see what it all really relates to. Not braggin you understand LOL.

All fun aside, that information and knowledge about my history and what is norm for me helps me to make good decisions and ask good questions.

Chemo week is done thank goodness. Like I've said I am really blessed in the minimal side effects and impact I have, compared to most others in the infusion room and the heavy duty stuff they are getting, but it still feels like a truck did a number on the ole bod LOL. Really tired this time but still functional. We went out to dinner tonight and headed back home. Have lots to do tomorrow to get ready for family (read grandkids) coming next weekend, but I expect there will be a lot of easy chair time too.

Have a great weekend.

God Bless,
Mike

Any one ever stopped transfusions? And if so, what were the results? You young whipper snappers probably are not high intermediate MDS with 7.5-8.5 hg. consistently.

Hi Everyone-
I feel like I haven't been here for while, I am so pre-occupied with students I hardly have time for relaxing.
Right now I have a nasty cold. Cough, and stuffy nose but just add me to the list of the other million people who have this same cold.
-Rachael,I am doing fine on Revlimid so far.I was on the lowest does possible, 5mg every other day so my side effects were almost non-existent. I am now on 5mg every day and eventually I will be on 10mg everyday. We are following the slow and steady rule to avoid any unwanted side effects. I do get bone pain from Revlimid and it also causes me to have the worst sleep ever. My counts have begun to fall like they should from the Revlimid. My WBC was 3.65 from 4.5 and my platelet count fell from 365 to 232. The doctors keep reminding me that this is what Revlimid is supposed to do so I am not to worry but it is difficult not to worry. Have your counts dropped at all?

-Birdmom, I am very excited to have a potential match. I did have three but two have taken themselves off the registry. That really bugged me when I found out and I had to remind myself that the world does not revolve around me, they can do as they please and there may have been a reason for coming off the registry.

-Maryabell, I am low risk mds and my hg was always between 6-8.About 5 weeks ago I got two units and I was boosted to 10.1. I held that for one week dropped to 9.9 and then I got my monthly friend (I am also on coumadin) which caused me to fall to 8.9. Last week I was at 8.4 and I think I probably stayed the same for this week.

Well, that is all the news for now.Stay well. xxoo

birdmom,

Thanks for th welcome.There is a lot to read here- to quote you.., 'yikes'! but I am learning some interesting things as I read and I'm sure my time here will be well spent. Although I do not like having the MDS, it's nice to know there are other people out there who struggle with this...and are willing to add theri encouragement and stories. We are all in the same ( leaky ) boat, eh?

Hi everyone - my name is Jane and I live in England. It feels odd to post here for the first time, as I feel I know all of you fairly well since I have been reading here for almost a year now, since my mum was diagnosed with MDS (RAEB 2 which has since progressed to AML)

When I discovered this thread, I linked her in case she wanted to use it as a support group, but she found it difficult to read because it made everything a bit too 'real'. I kept her informed of things, especially Chris's progress because he seemed to be an example of hope, but haven't been able to tell her that he passed away, so I hope she doesn't ask any time soon - I was so sad to read that he hadn't managed long in Bogota, but glad that he managed to get there at all.

Mum had 3 sessions of chemo, her last 5 day chemo was a couple of weeks ago, and now we await her BMB to see that all the leukaemia cells are gone - hopefully. Of course this isnt a cure, as you know, but she is told that she will have a better quality of life until they inevitably return. She is 67 and was told at one point she could have a Stem Cell Transplant despite her age, because she was otherwise so healthy, and her only brother was a perfect match. Unfortunately the first session of chemo led to a horrible infection, pneumonia and a stay in the ICU, so because she almost died, the docs said she now couldnt have the transplant. They said the chemo she almost didnt survive was way less harsh than the chemo she would need before stem cell transplant, so they wouldnt risk it.

She is incredibly strong and positive and having experienced being that close to death, she is more appreciative of things we often take for granted, like just being able to get around, enjoy food etc. Right now she feels great, and we are all going on a family cruise in December, so the trick we have learnt is to focus on the good stuff!

She is my best friend, and just the most incredible woman - the only time she gets sad about her AML is when she reads about young people getting it, and realising that she is lucky to have lived her life, while some people don't even get a chance to start theirs.

I must admit that it gets confusing because so many people seem to get the numbers reported differently. One minute I am hearing that mum's neutrophils are 1.6 and then reading someone else describing theirs as '50%', but reading here has given me lots of information about how other people are coping.

It's nice to finally 'meet' you all :)

Nah, Zoe, I don't get words, just L or H like you. Fresno is considered another Appalachia, ha! Most times I get just that day's report, but other times I get a sheet full of the prior treatments so that I can see at a glance whether I'm up or down overall, as Mikey says.

My next visit will be with the oncologist, but he never says much except "take another 1,000 WITAMIN D." (He was born in India, so all his V's are W's.) That seems to be the latest medical advice; for whatever reason, most of us are low, & it's good for the immune system. Since I spend a great deal of time in the sun, I can't figure out why I should be low. Anybody?