bleeding

[Linda]

28 Sep. 07

My husband has been in the hospital for 8 days. He has an ifection showing up in her blood. He is getting better because his fevers have broken. The Docs don't want him to leave the hospital until the infection is gone for sure.

However, he has had 2 episodes of bleeding during urination. He bled quite a bit. He also had diareah at the same time, or right after.

Has anyone else had this happen?

He is on Dacogen. Right now he is a week late starting 2nd cycle. Couldn't start on time due to fever.

[Ruth Cuadra]

Linda,

Your husband's situation sounds serious. Presumably, because he is in he hospital, the doctors are aware of his bleeding and diarrhea. The problems could be caused by the infection itself, the drugs they are giving your husband to fight the infection, or even a low platelet count. I haven't had these particular symptoms, but I would be asking what is being done to find out why this is happening. Staying in the hospital until all of this is resolved certainly sounds wise.

Let us know how your husband is doing.

Regards,
Ruth

[Linda]

29 Sep.

The Doc said this morning that the bleeding was due to the low platelets. He probably rupured a tiny corpusal and it bled so much due to the platelets. The diareah (and terrible night sweats) was probablly a side effect of the meds.

He is doing much better today. His fevers have stopped, and his spirist are up.

The Infection specialist is going to start weaning the antibiotics.

He is going to get a porta cath as soon as this is under control.

Thanks for your input.

[Lollie]

Linda,
I am sorry this is happening to your family. The only time I had excess bleeding was under the skin after my shoulder and artery surgery. I am glad your husband can have a bone marrow transplant. The doctors say I am to old for one.
Did your husband ever try Aranesp injections for the MDS?
Best wishes.
Lollie

[Linda]

30 Sep. 07

Yes, he gets Arenesp every other week as needed, which is every other week now. He used to get them every once in a while. The Doc now is concerned about his counts. WBC 1.4, Granucites 0.1. He gets Neupogen daily, and no results lately.

We talked today and he is supposed to get a porta cath put in. Bob is going to ask if Doc wants to do a BMB at the same time, ( he won't feel it ). I feel that we need to know what is going on in there.

He was supposed to have Dacogen cycle 2 last week. He and his other Doc in Winston-Salem decided to take the treatments unless he is too sick, no matter what the counts. I don't know how he will do with the second round when he is well enough.

So far this time he was in the hospital twice. The first time for almost 5 days, for a fungal infection in his throat. This time he has just passed 10 days for pneumonia, and an infection in his blood. He has really been a trooper, not getting too impatient.

Thanks for this forum!! You are all in our prayers!

[bwf]

Linda,

My mom, 70, has had bleeding too (in her stool), although she had it before she was started on Dacogen, which was at the end of August. She has had AA for 12 years; diagnosed with MDS this summer - not sure of her blast count. After the Dacogen (5 days on), she went home but felt awfully fatigued and my dad ended up taking her in to the hospital - I believe she had a bleeding episode then as well. She has been in the hospital since the end of August, including 2 trips, of several days each, in ICU. She had on/off fevers (she went days w/o signs of fever, only to have it return). The real devil has been this PCP/fungal pneumonia that she caught (going on 3 weeks now) - it is in both lungs. They are attacking in with Bactrim (Sulfameth Trimethoprim) and Menepenum (sp?). It appears to be working a little, but they say that CT snans still reveal the pneumonia is hanging on. Hew WBC was .1, but now has steadily climbed to 3.1. Her platelets have been as low as 12 or so (the doctor has tried to keep them above 50K, which seems to be the bleeding point). He is giving her Danizol (sp?) to try and keep the platelets up - and also Neupogen shots. We are not sure at this point if we would continue with the Dacogen for 2, 3, or 4th regimens, although that hasn't been ruled out either. But she is still in the woods with the pneumonia.

Best to you and Bob. If he could stand to go thru it, BMT may be the best long term solution as other options seem to have short-lived promises . . . until they find a cure.

Brian

[Linda]

Oct. 2
Bob came home today. He hasn't had any more bleeding, thank the Lord! He is relieved. His temp hasn't been above normal for 4 days. He also had pneumonia in both lungs, but it is gone now.
One of his meds was for a fungal infection (I think), it is called Micafugin 150mg. He was also on Azithromycin 500mg, Vancomycin 1250mg, and Cefepime 2G. The dosages is what Bob was getting. Perhaps you could mention these to the Doc.
The infection specialist, that perscribed some of these, was wishing he wasn't on the neupogen, I guess it may hamper some other meds. She also said it can help cancer to grow. Though she said she knew he had to have it for MDS.
I am going to research Danizol and see if it is an option for Bob.
He is 53 by the way.
The BMT is going to be a last resort on his list. The statistics are a little scary. However if the Docs say there is no other option then, of coarse, he will take it. The first 10 months he was not tx dependent, now he is. He is doing what is needed to stay as well as he can. Right now he is confined to the house, and can only go to the Doctors office. He will wear a mask, then, due to other people being around.
Sorry this is so long!
Hope your mom gets better soon!!!

[bwf]

Hi Linda,

Good to hear that he is home! Best place to be. My mother so badly wants to be home too, but Physical Therapy will be necessary once she gets better (power of positive thinking, right?). She is still not out of the woods.

She was also taking the Vancomycin for several days, although I'm not sure they are still giving that to her. she appears to be getting better each day. She has also had some hallucinations in the last few days as well - not all the time, but "at times." very disconcerting to say the least. her sodium is low so maybe that has something to do with it.

Not sure if I had mentioned in a previous post, but cyclosporine sustained her with Aplastic Anemia for years. not sure with MDS, if that is such a viable option - or long term solution.

On the longer term front, take a look at this link. http://investor.pharmion.com/phoenix...815&highlight=

There is continued longer term investigations / trials taking place with other drugs . . . one showing some promise here is called MGCD0103. Another doctor, closer to you, that I've read has done some research in the MDS arena is Dr. Steven Gore at John Hopkins in Maryland. At this point, exploring every avenue, overturning every stone, is worth looking into.

Best wishes -

[Linda]

Thanks very much!!