I hope everybody has a fun and relaxing Labor Day Weekend!
Enjoy & Take Care to all!!

Janet

Hi All

I'm hoping that someone in the group may have information on low Albumin levels. I have been watching my levels for a while and they have been decreasing. Over the last few months they have been on the low side of normal, but the latest blood results show the levels are now below normal (30 g/l - healthy levels are between 34 - 48) . I know that Albumin is produced in the liver and that it's a protein that helps stabilise the body's hormones, toxins etc in the kidneys. I didn't have this type of decrease in the first six months of taking Revlimid, but since starting the second six month regime the levels have decreased. Fatigue and muscle weakness have started to become a minor issue again. I hope the specialist can ease my worries next week when I see him. In October I have another BMB. I'm sure it will be Ok as my Hb counts have been consistently high. Hopefully those blast cells have not increased. Nuetrophils are still low, and the platelets have decreased again. I have to explain to those who don't know about my diagnosis why I have so many bruises all over my legs.

On the 11th of September I will be thinking of you all in America . I remember that day well. I couldn't sleep and turned on the TV to see a plane crash into the second tower. I remember feeling sick and terrified and I was a million miles away.

Keep safe everyone.
Rachael

Hi Rachel,
What were your blasts the last time you had a BMB? My bilirubin has been a little on the high side but sure if that's the same as albumin. My doctor does not seem concerned about this so I guess i'm not either.
Thank you for your comment about Sept. 11. We always get a little concerned this time of year because we always worry that the terrorists might get revenge on us again this time of year. The lerts are out here and all we can do is hope and pray that we all will be safe from these monsters.
Best of luck to you and hopefully your BMB blasts will be improved. When I was first diagnosed, my blasts were 7%. My last BMB the blasts were down to 1%. I hope the same happens with you.
God bless.
Susan

Hello! I am in upstate NY staying with my sister and husband. It has been raining and raining. Tuesday, I went with my nephew and sister to a prayer group and was announted with oil and prayed upon. I am feeling good. I do not feel that my hemoglobin has dropped since I left Michigan. Susan and Janet....What is BMB? Also, bilirubin and albumin are not te same if I remember right. It was interesting what your blast was because I never got my percent. However, I do not have leukemia. I am getting my sleep and not over doing it. Blessings to you all. Sandra

bmb is bone marrow biopsy

Hi Susan & Sandra,

Wikipedias definitions for both Bilirubin and Albumin are;

Bilirubin (formerly referred to as hematoidin) is the yellow breakdown product of normal heme catabolism. Heme is found in hemoglobin, a principal component of red blood cells. Bilirubin is excreted in bile and urine, and elevated levels may indicate certain diseases. It is responsible for the yellow color of bruises, the yellow color of urine (via its reduced breakdown product, urobilin), the brown color of faeces (via its conversion to stercobilin), and the yellow discoloration in jaundice

Albumin is the main protein of plasma; it binds water, cations (such as Ca2+, Na+ and K+), fatty acids, hormones, bilirubin and drugs - its main function is to regulate the colloidal osmotic pressure of blood. Alpha-fetoprotein (alpha-fetoglobulin) is a fetal plasma protein that binds various cations, fatty acids and bilirubin. Vitamin D-binding protein binds to vitamin D and its metabolites, as well as to fatty acids. The biological role of afamin (alpha-albumin) has not yet been characterised. Low albumin (hypoalbuminemia) may be caused by liver disease, nephrotic syndrome, burns, protein-losing enteropathy, malabsorption, malnutrition, late pregnancy, artefact, genetic variations and malignancy

The reason Im concerned is because Im relatively well at the moment and I want to be proactive with decreases that may affect my liver and kidneys .

Taking Revlimid has successfully decreased my blast count and its at now normal levels (1%). The reason Im having another BMB (Bone Marrow Biopsy) is because I receive Revlimid on a compassionate basis and because Ive had a blast percentage over 5%. The last BMB showed that over 50% metaphases which are the home for our chromosomes showed marked improvement. My goal is to achieve cytogenetic remission. An American specialist informed me that even if I achieve cytogenetic remission I still have to keep taking Revlimid to maintain that success. I was hoping I could take some time off the drug as it seems that there is no published information on the long term effects of Revlimid on the organs, and being thirty-nine long term exposure does concern me. Mind you its easier to take a tablet a day than having to go through a transplant.

Susan, its great to hear your blast count is back to 1%. It certainly a relief when it decreases. Sandra, its good to know your blast count as it is an indicator that the MDS is progressing to AML. If you have a blast count over 15% (% seems to vary in each country) I think thats when the specialists start to give stronger forms of chemotherapy.

Better be off, I have a child to get to school.

Rachael

Hi everyone, I was beginning to wonder where everyone was when I checked the board earlier this week.

Sandra, send some of that rain from NY down to Texas, we need it!! Enjoy your trip and the anniversary.

Mom is doing better this week after a marathon round of two units of blood a week ago Friday. I told her we're going to start calling her Grandma Dracula! The blood really helps her perk up. Her count was only 7 last week, so that's why she was so weak and shaky the week before. The platelets are up to a whopping 32, yippee. Our goal is 100 so she can get her neck pain looked at.

She goes for f/up tomorrow to see if she gets to have another round of chemo. Hoping for better numbers.

Mom is on Dacogen and Epogen, plus rounds of blood and platelets. She had bad reactions to Arensep.

I was wondering about the Danazol. Becky Jean, is it for the younger folks or those not doing chemo?

Birdmom, where are you, hope everything is okay!!

Mike, is your Sunoco Race what you call your transfusions. Funny! Our last one went from Noon to 11:30, eek.

Take care everyone. Prayers for you all that you will be better and have a good week.

Yea my Sunoco Race Fuel is what I call the transfusions. The one I had a week from last Friday got me going again but not like the last couple of times. We did Grandbabies in Waco this weekend, and spent Sat at the outlet malls near Austin trying to find toys that we hadn't already bought for them he he. Fortunatley there were some there to their delight. Between that and an air mattress that wouldn't hole air well causing lack of sleep, we're home but I'm not in very good shape. Wore me out big time this trip but was worth every minute of it..'

Glad your Mom is doing better after her transfusions. Went to the VA for my semi annual visit and their lab report showed my WBC at 7.9. I suspect there was an error in there as I've not been above the 2's for several years.

Have a great week everyone.
God Bless,
Mike

Hi again, we have a question. Is there a way to get just the MDS support group to come up when you log in? Mom is having trouble navigating to the right board. We want it to just open up there instead of having to go through the long list of all the diseases. If someone can tell us how to work this, that would be great. Thanks!

Gma
Danazol perhaps for the young at heart. I'm just short of 76. Not exactly why he put me on Danazol, didn't have faith in it but felt he needed to give it a try before starting on Dacogen or Vidaza. Have to tell you that the body responded to the first 2 weeks but then HGB went down again. Our grandson & family were here over Labor Day weekend but I took naps most of the time. I was at Andrews AFB on Wed Sept 7th for routine followup on other tests and the HGb was 7.7 and he scheduled me for a blood transfusion. I rec'd two units and kept overnite for observation. Military doesn't deal with insurance issues. However the inpatient services at the hospital will close this week and in the future would go to Bethesda Navy Hosp. It was a lot easier than going to Geo Wash as we take the metro to DC and the metro stop is one mile from Andrews. Blood test when released from the hospital were HGB 11.3--I return to GW on Thurs for blood tests but doubt I'll need an Aranesp shot. I see the doc Sept 22, after 6 weeks on Danazol for evaluation and what the next step will be. Just taking one day at a time. Have a great week everyone.

HI everybody I'm new at doing this stuff. I had platlets yesterday for my MDS which they diagnosed in April Have had 2 sessions of chemo and numerous shots and several units of blood &platlets Since I've been a healthy old (88) lady this is hard for me to cope with but I welcome any suggestions. I do more resting & napping than ever before!
bettybirder

Hi, again. Mike I do like that you named your transfusion day, LOL! We'll need to find one for Mom's. She calls her platelet transfusions her Orange Juice because that's what it looks like. Monday's visit was not great, her platelets are down to 10, so no chemo this week. The red count was up over 9 tho. Mike, how long have you been getting the Sunoco Race Fuel and have you become dependent? Mom just had her 7th transfusion since late April and I'm wondering how long we can keep doing tranfusions.

Betty Jean, I hope the Danazol works for you. Mom has been trying to do the Dacogen, but her numbers just keep diving so we've only gotten in two rounds of chemo. The chemo doesn't make her sick, so we're happy about that and she still has her hair! They say it takes 4-6 rounds to help, but we just haven't been able to get even 3 in yet.

Has anyone on here taken anti-depressants to help deal with this disease? It must be a struggle going thru this. I know when I had a bad bout of mono last year my dr. put me on anti-depressants to help me come out of it. I was reluctant, but it really did help me. I've seen Mom getting really down, so I've been wondering about that.

Bettybirder/Mom, I'm glad to see you're checking in here! We have my daughter's wedding shower this weekend and then I'm off to the Caribbean next week for a cruise. Can't wait for the cruise, but I'll be worrrying about Mom. Hugs to you all!

Gma and Betty Birder (it appears you two might be related).

I have only had to have the platelets a couple of times, once when they put my port in and it looked like mustard juice to me LOL.. I call chemo - juice days. Anything to have a little fun out of each day. I've been on transfusions for about 9 months now and they say I'm dependent. Unless a blood test shows really low on the HCT and the RBC they pretty well let me decide, based on the breathing and fatigue symptoms, when I get them. I try to hold off as long as possible to avoid the build up of iron side effects that come after having 50 to 70+.

We all get really tired with this junk and get frustrated with having to take it easy. As I said earlier we went to see the Grand kids over the weekend and even though I spent a couple of hours out of the heat in the food court, it still pulled me down so am paying the price early this week.

Regarding the anti-depressants I personally do all I can to not take any more meds than I absolutely have to. I was on some of those many years back for an unrelated health problem and glad to be off of them. I have a huge strength of faith in God. He and I walk each step of the way through this and all the other junk that comes our way in this life. He's not let me down yet and after 45 years of hanging out together I don't expect after all my "not getting it rights" that He won't stick it out with me now. Do I ever get angry, frustrated, a bit depressed and a few other choice emotions at this stuff we have? You bet but it never lasts long because I keep my mind on the positives and all that He has put out there for us to have.

Have a great trip next week.

Mike

Hi everyone, had blood tests yesterday at GW. The 2 units of blood rec'd last week still holding HGB at 11.3. I feel almost normal. This was my first so have no idea how long it will last. Counts are still low. Platelets have always been in the normal or slightly high range. Still dealing with Hemochromatosis so am back on Exjade for the excess iron. Have appt with doc next week to determine next phase of this journey. Have a great weekend.

Hi to our leaky boat crew,

Not much to report here. Hgb down to 9.3, a new low for me.

About antidepressants, I've been on one for probably 15 years now. I've had two major depressions in the past, but no longer suffer from more than the blues occasionally. I respond very well to this long-term therapy, & plan to continue for the rest of my life.

Motorcyclegma, my daughter lives in Garland. She has her late father's Harley, but it needs fixing.

I have a grandbaby trip coming up next week. Up to now I haven't bought toys for her, but this time I couldn't resist. She's 9 months old & crawling, the delight of our lives.

Keep plugging, & listen to Mike.