Thanks Chris. I guess I am just worried because every time I go the count keeps going down

Dear SusanB4,
I am so sorry to hear that your daughter has MDS. In America, white blood cells are abbreviated as WBC, Hemoglobin is Hgb, Hematocrit is HCT (both refer to red blood cells). The Leukemia and Lymphoma Society (LLS)can help you with a good batch of basic information about MDS, at www.leukemia-lymphoma.org/.
I have 5q-, one of the 6 or so classifications of MDS. 5q-, also called 5q deletion, refers to a damaged #5 chromosome. The chromosome should look like an "X", with shorter legs on top and longer legs on bottom. In 5q-, one of the legs is missing, so the chromosome cannot create healthy red blood cells, which is it's normal job. To diagnose 5q-, the oncologist will do a bone marrow biopsy or aspiration and have a genetic specialist look at slides from the marrow. They can actually see the damaged chromosome if that is the problem. I have a photo of mine in my files!
There are several other types of MDS, which are well explained at the LLS website. Hope this helps.

Hi also to cnemeti,
When I first started on Revlimid, my platelet counts and white blood cell counts went way down, which is apparently typical for that medication. Over the years they have both returned to normal, luckily.

Have you asked your doc why the platelet count keeps going down? Let him know that you are worried, and hopefully he can explain what is going on. I wish I knew more on that subject, but you might find the LLS website helpful, also. They have oncological nurses available for phone calls and online question/answer sessions, so might be able to give you some answers.

Cnemeti, I wanted to tell you what I have learned about platelet counts and what can cause a drop in numbers.

Platelets are destroyed by:
Tylenol aka Acetaminophen-
Aspirin aka acetylsalicylic acid-
Ibuprofen aka Advil or Motrin-
Naproxen Sodium aka Naprosyn & Aleve & Anaprox.

Make sure these ingredients aren't in your prescription pain meds like darvocet or hydrocodones such as vicodin,vicoprofen, lortab, lortab max, lorcet and norco. Because all of those contain tylenol. Also check your cold/allergy medications that you use. Dayquil and Nyquil, are good examples because these products contain acetominophen.


Platelets can also be destroyed by the spleen. When this happens, the patient usually has a full feeling and distended abdomen. The spleen can be removed or can be turned into scar tissue with as little as 5 very mild radiation sessions. The enlarged spleen is a result of too many antibodies and antigens built up from very frequent red blood cell and/or platelet transfusions.

Since my mother has antibodies and antigens...her transfusions started to fail after two years. She now gets single donor and irratiated blood products. This can be accomplished by the determination of your Dr. and a cooperative blood bank.


You can get a platelet transfusion. Don't let your plates go below 10. 10 and under is considered critical and will be considered a critical need by hospital staff and the blood bank. Plates are transfused faster than packed red blood cells and you do not have to get typed and cross matched before hand. It takes 20-40 minutes to transfuse after you have had pre-medication. (benadryl, tylenol and solumedrol)

I have seen symptoms of swelling around the eyes and of the whites of the eyes, hives and itching during countless platelet transfusion. The staff would make note of this, and slow the I.V. drip. Tylenol is given only because a real reaction would include sudden fever.

I hope this information helps.

I take tylenol every day,as I cant take aspirins because I have had a previous heart attack that I did know I had and take Plavix. Thanks for your research. Today has been a bad day and I feel like I need to scrape myself up off the floor and go home from work. Thanks again for your support

Hi all - keep your spirits up cnemeti, that helps! I put mom in the hospital on Sunday, her RBC was 6, they gave her 3 units and platelettes. She now has an infection in her colon and they are giving her antibiotics. 2 more units of blood today. Like you, today has not been a good day. Maybe tomorrow!

thanks pharmgirl

Hey, Pharmgirl, you complimented dizzygirl as being smart (she is!), but it's so funny b/c after reading several of your posts, esp about the drugs that increase platelet counts, I was going to tell you how smart *you* are. :-) Take care, and be well!

I'm back from yet another trip. I'm so pleased to see so many of you posting.

Lately I've been feeling so well that I daydream I really don't have MDS after all! It helps that I don't need to see my hema/oncol till June. However, I had a blood test for a urology visit, & have blood in my urine. Not sure what's up with that, but I'll have a CT scan in about a week.

Do any of you have problems with long-term bruising? I still have a black eye from my fall in early March.

Pharmgirl, you're really getting an education, aren't you? Thanks for the info on mild pain relievers. I didn't know that they affect platelet counts.

SusanB4, how is your daughter doing? Any word on nailing a diagnosis?

Chris, are you doing okay these days?

Cnmeti, this doesn't necessarily translate to your situation, but my counts mostly went down, then suddenly shot back up. Have no idea why, but maybe yours will do the same.

Hello Birdmom,

Had noticed you were not around but assumed you'd got lost ihn the mountains!

I'm fine I think. All counts stable or a bit better, in that they have all moved up a bit. WBC gone up from 3.19 to 5.2 Yippee.!
Red from 10.0 to 10.2. and platelets were at 50 (low point so far) now 63. Feel well enough to have planned a trip with my wife Judith, for a week in Dubai with one daughter, followed by a week in Hong Kong with her twin sister, and her three babies, two of which who landed last summer are twins. After Hong Kong, my wife returns to UK, and I spend a further 4 days in DFubai.

My GP has advised me to wear a surgical mask on the planes, as their air system, just circulates all the bugs evenly to everyone! Will look a bit ostentatious, but the advice is I suspect sound.

I am indebted to Pharmgirl( who seems very full of very sound advice, that Aspirin is not good for us. I have been on 300mg per day for 4 or 5 years, so am going back to the Vascular consultant to get his agreement to cut back to .75 which should be enough, and strikes me as a good compromise between the needs and problems of MDS and Vascular problems.

Anyway I feel well, and recently have had much less need to sleep during the day, which is good news. After several of our friwends have given me advice on DS, I am now convinced I may live for ever, or at least 3 to 5 years, but the difficulty with all these counts is they can go down (to wit Cnemeti) and up in a short space of time. I feel for cnemeti, as I am doing well and she is having problems. Pharmgirl is obviously very worried about her Mother, and rightly so. Nice all to see one or two new corrwespondence who are most welcome. As I have always said, there is enormous benefit for all of us by sharing our esxperiences.

Anyway welcome back, and look forward to a good summer in the fresh mountain air.

Hugs to all!
Chris.

Damn, if I'd waited I might have been Number 100.

Just to spike you all, I am taking up the chance of being Number 100, not bad in just a few months.

I have a friend coming shortly, so will try and get him to teach me how to put up a photograph, and set all you girls fainting!!!! Yippeeeeeeeeeeeeeeeee!
Chris.

Oh Chris, you devil! I'm not sure we can handle your handsome visage, but we'll give it a go. I'm delighted to hear of your plans to travel, & the mask sounds quite sensible. Who cares what people think? It's your LIFE you're protecting. Just be sure to get plenty of rest in between all the doings.

Hello to my MSD family...:). I am in Houston this week but was diagnosed with Intermediate I MDS. This was my second opinion. My main problem is my red blood cell count. Last Tuesday my count was 8.7 down from 9 six days earlier when i was in Illinois. I have felt pretty good up until today when the fatigue and crazy feeling set in. I will be doctoring totally at MD Anderson and flying from Illinois for treatment when needed. I see the doctor next Monday and am not sure what treatment program he will put me on or if he will treat me on this day. My last blood transfusion was 4/19. Thank you all for the support and telling about yourself. I think there is some confusion. Been is my daughter and I am SusanB4(couldn't think of another nic). My daughter is my support and keeps me going and I sure do appreciate all her help and concern. We can all help each other out and share information which is a great relief for myself and i'm sure others.

Thanks Birdmom,

Of course the mask is a little bit of camouflage so that no-one on any of the 4 flights actually sees what I am like. I neither wish to make the women jealous that they cannot match my looks in their men, nor do I wish to come off the flight with the award for ugliest passenger. So claiming infection control gets me out of my quanduary.

By the way does anyone know whether active sex is good or bad for MDS and blood counts. I am just looking for reasons why I have been static or improving for 4 months. If anyone knows the answer I will then disclose whether I have lots of active sex, or never have active sex.!!!!

Love and good luck to all of us, whereever we are.
Chris.

Ah Chris, thanks for my first chuckles of the day. You are TOO funny!

About the sex part, I've never read anything about that (with MDS!), but then--men do have a slightly different role to play in that arena. We women would probably be affected only dependent on how tired we feel. I can see it now: "Not tonight, dear, I have MDS."

SusanB4, thanks for clarifying your relationship to Been. Didn't know that.

I have been checking out places to have a second opinion. I was thinking of Mayo Clinic. I think there is one in MN, does anyone have any comments on it.