Hello to everyone,

The Leaky Boat crew continues to grow (unfortunately) but we are all here togoether so that is a good thing.

Mikeyti - Sorry to hear you are in the hospital. I hope you are feeling better and released soon. You mention several good points to remember. Thank you for sharing.

Birdmom - I too get cramping a lot in the foot area especially but had never considered that it would be linked to the MDS.

Rachael - I have had chest pains (more like an aching feeling) when my hemoglobin and rbc are very low which the doctor told me is realted to the lack of red blood cells and oxygen. He never mentioned whether this could cause damage but at my next visit in abt 3 weeks, i will have to ask. Hope all goes well with your tests.

Take care everyone.

LaDawn

I think I read somewhere that continually low hemoglobin will damage internal organs at some point. not sure where I saw that though. I research so much of this stuff. argh!

Hey all,,, Finally got to talk to my alternate oncologist and we came to the conclusion that after 2 1/2 years I knew what I was doing and even though the blood counts are still low with me knowing the rules on fevers etc that I'd be better off at home, in my big chair, with my dog and my big tv LOL.

So paperwork and I'm outta here. You all have a great day.

Mike

Mike, that's great news. My dad would agree, there's nothing like your big comfy chair to nurse you back to health :)
Hope things continue to go well.

Julie

It sounds like we are all in the same boat but with different symptoms and weird things happening. My weird problem is itching. Does anyone else have this problem. It's mainly on both arms but sometimes it drives me crazy. I have tried different lotions and creams but nothing helps. It sometimes even wakes me up at night. It's not constant and I can't tell when it is the worst. Just something else I don't think anyone has mentioned. I wondered if that has to do with the MDS/CMML meaning the leukemia part of my MDS. Just another thing to deal with. My last transfusion was July 1 and I am still feeling good....no naps and some shortness of breath at times but I can still do about everything. I guess there is a silver lining some days....:).

Hi everyone - sorry it's been so long since we last posted. Lou and I are still missing Chris...but realize the give and take we receive from this "New Member" group is invaluable to our progress through MDS.

I know everyone out there is seeking knowledge and support and the first step is to reach out to this group.

Update: we're back from Las Vegas after having a great time and leaving a few dollars there in support of all their many beautiful lights! Thanks for all your well wishes for our anniversary. It was fun to read all the postings about all the long and short-time marriages out there.

Tomorrow is our regularly scheduled blood test to gauge his progress. He's been on twice weekly Procrit injections of 40,000 units each for 1 year now and he's remained stable. Highest Hemaglobin rating was 10.6....lowest was 9.1. The latest trouble is managing his newly diagnosed diabetes. It's not been stable yet and he may need a higher dose of meds....we should know more soon.

Take care Leaky Boat Crew!

Lou & Gayle Najera

Thanks Julie - Big chair with dog and big tv along with a big bed and pillows not wrapped in plast and no one waking you up every hour or so to see if you feel all right is great example of a "good thing".

As for itching I havn't has like the entire arms itching as in all over but when the platlets are low I'll get some "bruises" that just show up and itch like crazy for the first few hours. The other thing I have had (mostly prior to he last six months) has been hive like areas that show up. Benadryl cream has always helped those. We have a humidifier in the bedroom, mostly for Mama's bronichal stuff, but I don't seem to have as many problem with dry skin and the associated itching. Hope that helps.

Have a great day everyone.

Mike

Hi Susan
Last week I had a mild reaction to a blood transfusion. A large welt appeared on the right side of my neck and for a few hours my arms were itchy. The nurses said the welt was definitely a side effect but werent sure if the itchiness was due to the transfusion. I had no reaction to the second bag of blood which I received the next morning.
Rachael

Rachel...do they keep you overnight when you have a transfusion? I am usually at the hospital for about 6 hrs. for two units, then go home. Thanks for the replies on the itching. I have tried everything from cream to lotions to no avail. A humidifier might help though. I think it has something to do with the CMML (leukemia). I'll try to remember to ask the doctor. It sounds like we are all about the same which is good.

Welcome back, Gayle & Lou! Susan, I do have an itching problem, but don't think it's related to MDS in my case, at least. I too use benadryl cream, but the best is a prescription antifungus cream that lately I haven't had to use.

Saw the oncol yesterday. HGB down to 10.3, but he's still happy with the number. I was hot, tired, & cranky, but got absolutely no sympathy from him at all, lol! He doubled my Vit B3 to 2,000 a day is the only change.

I asked him about the cramping, & he didn't see anything in my levels that stood out, so it's back to eating bananas & putting up with it.

I think they give my Dad benedryl for the itching while he is getting the blood. or right after. He hasn't mentioned itching though

They tell me that they give the benedryl prior to transfusions because some folks have a mild allergic type reaction and this sort of stops it before it begins. They also give me tylenol because sometimes you develop a fever and this gets on that ahead of time.

Daily temp fluctuations are normal but since my last chemo it seems that mine are a bit more noticable. In the morning I'm in the 97's and in the evenings in the 99's. With a low level fever I end up with mild night sweats. Just curious if anyone else has the same experience.

Just a side note the temp that my doc says should be the trigger factor for going to the emergency room in case of infection is 100.5. I had been working on 100.2 and should have waited a couple of hours or a little more to test several times. If I had I would not have been in the ole hospital over the weekend. I have enough antibiotics in me that I could clean a room out by just walking in LOL. I did learn that my combination of WBC and neutrophilse was extremetly low causing an ANC of around 140 which is ridiculous low. Give me some more stuff to talk with the doc in a couple of weeks.

As for the RBC and hemoglobin I've been in the low 7 to mid 8 range for sometime. They gave me two unit transfusion while I was in the hospital as I was at 7.2 and it went up to 8.6 then dropped a bit. 2 weeks ago they gave me two units while I was gettting chemo. It helps but not as much as I would like, I guess because one time the chemo is doing it's thing then this last time I'm at the bottom of what the chemo is still doing so I guess it's not able to get higher cause it keeps getting smacked down LOL

Have a great week everyone

God Bless
Mike

Hi Susan

I don't usually have to stay in hospital overnight for a blood transfusion. Unfortunately this time I had been experiencing extreme nausea and dizziness over a four day period. I got a stern warning not to endure the nausea & dizziness anymore and to immediately inform them and go for a blood test to have my Hb checked. At the moment the specialist is trying to gauge if the Hb is causing the above (as this seems to be a recurring issue) or if I'm becoming more susceptible to undetectable viruses.

Rachael

David was experiencing weakness, dizziness and poor balance before last blood transfusion-hb was 7.4. That went away following the transfusion-that was good news. He was receiving transfusions approx. once a month. We discovered today that hb is back to 8.4 so another transfusion is scheduled for Friday which will be two weeks since last transfusion. Does not seem like a favorable direction.