Husband's MDS

[Joan]

I just found the marrow forums from the AA & MDS Foundation newsletter. I have been reading many of the postings and find them very interesting.

My husband was diagnosed with MDS, refractory cytopenia with dysplasia without increased myeloblasts, in April, 2006. He was started on aranesp which he got every two weeks until March, 2007 when Medicare said they would no longer pay for it. Doctor switched him to epogen/procrit, 40,000 units every two weeks. His hgb continued to drop so doctored upped dosage to 60,000. That was holding it reasonably well. Then Medicare said the hgb had to be below 10 to get a shot. So, without the shot for several weeks, his hgb dropped below 10 so he is back getting either epogen or procrit every two weeks. The reason I give both drugs is that the clinic gives which ever one it has on hand.

He had a blood transfusion in August of 2006 and again in July, 2007. That transfusion was a result of a hospitalization due to a severe reaction to Exjade. We were out of state so had to deal with doctors unfamiliar with Don's illness. They didn't believe it was a drug reaction.

He was 74 when he was diagnosed. Doctor thinks it is from the chemotherapy he received in 1993 for non-Hodgkins lymphomona. He walks a couple of miles every day. I don't have any questions at this time.

[Beth]

Hi Joan,

My husband has not been doing too well so I haven't been back here in a while. I am sorry to have missed your message and hope you are still checking in here. My husband also has MDS RA type with low everything it seems. Is your husband responding as well to Procrit as Aranesp? My husband got very sick with Aranesp and could not take it anyway. He is on Medicare too and is 69. He has just started getting the Procrit injection and hopes that will increase HgB and HcT. Problems with fevers with the Neulasta and Procrit though.

Hopefully I can be better about checking in here because we all need someone who understands this illness to talk to sometimes. I sure do. How is everything for you and your husband now?

Beth

[Joan]

Hi Beth;

What a shame your husband couldn't take aranesp. Procrit seems to be working for Don but doctor had to up dosage from 40,000 units that he stated giving him to 60,000. Procrit really just held Don's hgb. For the first time his hgb went up significantly these past two weeks but still way below normal. He always tells people he is fair but I would say he is doing pretty good overall. Hope your husband starts doing better.

Joan

[Beth]

Hi Joan

Glad to see you are still here. I'm glad your husband is doing pretty well. I did not know Medicare cut off at 10. What a relief Don is responding to Procrit too. That is great.

My husband started his 4th round of Dacogen last week ending on Friday, Neulasta for white blood cells Saturday, then Procrit on Tuesday. He has been running a fever since then, spiking 101 one day, then 102 yesterday. They ran every test known to man yesterday for infections or anything else that might be causing it and found nothing. It goes up and then gradually starts going down over a 3 hr period, then doesn't have any until the next day. Yesterday and today, however, it is not going back to normal for long. In other words, it is all over the place. His biggest problem is the very low white blood cells (down to .4,.8 even). Yesterday 1.6. Dacogen usually hops it up to 4.5 but not yet this time. This is a good Cancer Center but not an MDS Center. They do have a good number they say of MDS patients. They seem to think that all three meds have a side effect of fever and that he seems to be having that as a side effect to all three so close together.

The HgB is up to 10.0 and RBC 3.3 so he did not have to have a transfusion today as right after last round of Dacogen so that is good. I'm clinging to that increase good news and hoping the WBC will follow an up too. He has had to have a transfusion every 3 weeks for a while now.

Take care,
Beth

Guess I am just more worried than usual. Can you tell?

[Joan]

Hi Beth;

Sorry about your husband's fevers. Of course, you are worried. What spouse wouldn't be.

Don only is getting Procrit so I am not familiar with other drugs your hsubands gets. During chemo, 15 years ago, Don had very, very low white cell count so got neuprogen regularly.

How many units of blood does your husband get at each transfusion?

Good luck. Hope the fever subsides.

Joan

[Beth]

Hi Joan,

Hope you and Don had a good weekend. Today was a little better for us. After continuing to run a 101 several times yesterday, I talked him into calling the doc. The doc on call sent in a broad spectrum antibiotic, and today his fever has stayed much lower (never over 100.6) as long as we kept Tylenol going every four hours. Hopefully tomorrow will be even better and we can start stretching the Tylenol time out. I really think when someone's WBC is that low, all kinds of infections could be going on that don't necessarily show up on tests. Must admit though that the Procrit shot scheduled for Tues doesn't sound like such a good idea at this point. We are going to mention to the injection nurse what has been happening and to double check with doc. It surely is hard to tell what is causingwhat with this illness. I know they were hoping the Procrit would help avoid so many transfusions. They always draw blood so we will see what the numbers are then.

He always gets two units of blood when he gets a transfusion. They may do one sometimes; I'm not sure. He can tell when he needs one now but doesn't have severe symptoms, more fatigued and short of breath, but his has gotten down to 7.3 before suddenly. That needed quick attention. They always do one at 8.0. I think he has only recently realized that he has more foggy thinking too. The way I tell is that he gets this little dry short cough. It sounds very different.

He at least smiled a few times today and sat up 10 min. twice so that made me happy.

Take care,
Beth

[Joan]

Hi Beth;

Hope your husband's fever has continued on down. He must feel really punk if he is staying in bed. Don also had fever a couple of days last week, never got over 101. Then he developed a sore throat and fever went away. That doesn't make sense but what does. Fortunately sore throat only lasted a couple of days and then he thought he was getting a cold but so far that hasn't materialized. Actually today I think he is feeling pretty good as he cleaned the bathroom for me and washed the kitchen floor. I assumed he would take a nap after doing that but he didn't.

How long has your husband been diagnosed with MDS?

Good luck.

Joan