Vidaza Reaction

[annm1103]

My 75 yr old father was diagnosed in early 2009 with MDS. He has had 2 rounds of Vidaza and both times he got an infection in his blood causing hospitalization and a nursing home stay for rehab. He is currently going through the second one. Both times he has become combative and uncooperative. Although I cannot speak for this time yet, last time there was an entire month he cannot account for. Are we running out of options? He is doctor is extremely uncommunicative and we are in the dark at this point. I could really use some advice.

[bebop]

I am so sorry you and your dad are going thru this. if it were me and the dr would not communicate very well I would change drs. it is your dads right to have someone that will talk about it with him and yourself about it. just my opinion.

[annm1103]

Apparently Mom ran into the doctor this morning and he said there is nothing more than do.

[Neil Cuadra]

Perhaps your father is getting the best possible treatment but how can you know if the doctor won't share information or explanations? I agree with bebop that your family deserves better communication from the doctor. Can you find another physician for your father, or can you at least be very frank in insisting on better communication?

[annm1103]

I believe he has resigned himself to the fact he is dying and he is unwilling to pursue another doctor. There are better doctors about an hour away but he has refused to go. Therefore, my hands are tied.

[Neil Cuadra]

annm1103,

I understand and sympathize. Your father may have expected better results from the Vidaza and resented having to be in a nursing home. You may not share his current pessimism but I'm sure you want to respect his wishes.

If your father was uncooperative with the doctors, that may be one of the reasons the doctors haven't had the best bedside manner with him or with your mother. Do you think it would help you to talk to his doctor on your own and get a first-hand account of your father's condition and prognosis? Even if he can't tell you good news about your father, it might be better for you to hear the facts directly.

[Chirley]

I'm sorry to hear about your Dad.

If he has had infections and fevers,then, it's not surprising that he has had episodes of confusion and aggression. I've just finished my 3rd cycle of Vidaza and I've had fevers with all 3 cycles but I've had negative blood cultures. My doctor thinks that the fevers are a drug reaction but isn't willing to take the risk of not treating as if it's an infection.

I haven't read anywhere that confusion or aggression are side effects of Vidaza so it's possibly related to either the infection or the fever causing cerebral irritation.

It's very hard to accept your Dads wish to not pursue further treatment but unless his thinking has been clouded by his illness, you'll have to accept his wishes and just be there for him as he battles this disease. I'm sure you wouldn't want him to pursue further treatment only to make the rest of the family happy.

I also agree that if you don't feel satisfied with his current doctor then you really need to ask for another opinion or bite the bullet and tell his current doctor that the family feel as if they aren't being included in decision making and communications. He may not be aware that he has been so aloof.

I wish you and your Dad all the best.

[Birgitta-A]

Hi annm,
Do you know anything about your Dad's counts?

When we get infections it is often because our white blood cells are low. The bone marrow can make more white blood cells if we get injections with drugs that stimulates the bone marrow.

My white blood cells have been low since I had fever Sept 2007 and I take 3 injections Neupogen/week and my white blood cells are OK. Perhaps Neupogen or a similar drug could help your Dad when his white blood cells decrease during Vidaza treatment. It is important to fight the adverse effects of Vidaza so we can tolerate the drug.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs, Thalidomide 50 mg 5 caps/week + Prednisone 10 mg/day for bone marrow fibrosis.

[annm1103]

I do not know the exact figures right now, but he is averaging a little over a pint a week that he needs. I do know his platelets are 11 right now. His confusion is their main concern. They don't know what is causing it. After they clear that up, they will call in hospice.

[Dick S]

Originally Posted by annm1103

They don't know what is causing it. After they clear that up, they will call in hospice.

Hey wait a minute! It sounds like everybody is writing your dad off. I'm 75, almost 76, and I am still fighting the disease. Have you sat down with your father and talked it out and tried to reason with him? Have you tried to find out what is bothering him about this whole ordeal? Is there anyone in the family that he is close to that can talk to him? Have you gone nose-to-nose with the doctors to find out what else can be done? Has anyone sought out another doctor? If he won't go to the doctor, bring the doctor to him. There are many options these days, don't just give up. You all can't just give up. If your dad won't do it, someone needs to step and help fight the battle for him.
Sorry. Rant off, but don't just let the guy die!

[ann]

I agree with Dick, don't let him give up and don't you give up. My husband has had 13 rounds of Vidaza and his blood counts are good. He has other health problems. namely congestive heart disease. He spent a week in the hospital with a collapsed lung and came out feeling so weak and depressed. Depression is not like him. The cardiologist had given him a new med and when I finally looked it up the side effects were terrible. One was fainting and he was doing that, falling and I was so afraid he was going to hit his head and have a bleeding in the brain. I am calling the cardiologist today and we are going to have a sit down. Maybe you need to explore all the side effects of your father's meds. It maybe something else besides the vidaza that is causing his problems. Above all GET ANOTHER DOCTOR. If the doctor will not talk to the family and explain what is happening, then do change.
God bless you and your family.
ann

[annm1103]

He has stated his wishes not to see another doctor...our hands are tied.

[Birgitta-A]

Hi annm,
You know we often get confused when there is something wrong in our bodies. Fever, low hemoglobin, too high or too low blood suger and a lot of other symtoms can cause confusion. These confusions are quite easy to treat.

Have you heard if your father has too much blast cells (immature cells) in his blood or bone marrow? Did they tell you how his MDS is classified?

A platlets count of 11 is low. Your father probably needs platelet transfusions. Then you could try to avoid everything that can decrease platelets. Many drugs especially pain killers can decrease platelets. Of cause your father need many drugs now when he is ill but you can think about the adverse reactions of the drugs.

Here is a link to MDS treatment - look at supportive therapy:
http://www.cancer.net/patient/Cancer...itle=Treatment

As you can see they recommend transfusions (blood and platelets) and growth factors that promote cell maturation, such as a red blood cell growth factor like Epogen, and a white blood cell growth factor like Neupogen.

You know it is very common that the first cycles of Vidaza decreases all count (red blood cells, white blood cells and platelets). Then the patients should have supportive therapy not go to hospice.

Hope that your father's confusion disappears and that he will get the best possible supportive therapy!
Kind regards
Birgitta-A

[annm1103]

He has had 4 pints in the last week. I don't know about the blast cells.

[Dick S]

Originally Posted by annm1103

...our hands are tied.

NO NO NO, THEY ARE NOT! If he were my father, I would have him to another doctor or something if I had to hogtie him or something, anything. I would do whatever it takes to get him some help to live. I'm sorry, but it sounds like you, the doctors and everyone are throwing up their hands and saying "oh well, the disease has got him, let him die". I have never heard of so many people with such a defeatist attitude.

[Al's Wife]

Ann,

I just want to agree with everyone else here that has already spoken. Please, please DO NOT GIVE UP and don't let your Dad give up. My husband was recently diagnosed with MDS and just finished his third round of Vidaza. And while he hasn't had the side effects of your Dad, my husband is fixing to be 73 and he is going to fight this roller coaster disease as long as there is a breath left in us. I have read and read and tried to learn as much as I can about this disease so that I can help him. So please keep trying to convince your Dad to seek another doctor. It is so important to have confidence in your doctor and it doesn't sound like that is the case with your Dad. So please find another doctor. There are so many different options out there today for each individual MDS case and I have to believe there is something that can help your Dad to have a better quality of life as well as a longer life. God bless you in your efforts to help him. Keep us all posted.

Linda
Husband dx 5/26/2010 MDS Int-1; Vidaza 28 day cycle.

[tytd]

Hello Ann, I have heard an MDS expert lecture that some oncologist's have not had enough experience using Vidaza yet and suggested that someone with a lot of experience with MDS patients might be better managing patients on this drug. He said that sometimes you have to "bite the bullet" with this drug and endure some side effects to get to the benefits. "No pain, no gain". Of course elderly patients are much more fragile and susceptible to side effects and infections especially if they have other underlying conditions to deal with. The suggestion that others have given about checking your Dad's other medications to make sure he is not getting confusion from them or drug interactions is a good one. We do not know all the details about your Dad's condition and his doctor may be right. However if he has not dealt with a lot of MDS patients , I would at least ask that he get an opinion from an MDS expert even if it's just a phone consultation with one. Good luck to you and your Dad

[Debbie W]

I have to echo the other thoughts about consulting another doctor, you can always take his information for a consultation and see what they have to say, even if you have to do without the patient. Drugs and disease can both play games with one's mind and he may not be able to make decisions at this point and need outside help to move him past this period.

Sending you good thoughts and strength.

Debbie

[annm1103]

My father died Sept 4th. Thank you for your support.

[tytd]

You are welcome, Ann. I am very sorry to hear of your father's death. I know that he was blessed to have your love and support. Take care. tytd

[bebop]

I am so very sorry for your loss. Words are never enough in times like these. My thoughts and prayers are with you!

[mausmish]

Ann, I'm very sorry for your father's death and hope you can find some comfort here among friends who can understand what you've been through with this illness.

[ann]

So sorry to hear of your father's death. You did all you could and now you must go on with no feelings of regret. He did not want another doctor or treatment and we must understand that it was his wishes that were met. I pray that you and your family find peace. God bless you.
ann

[Neil Cuadra]

annm,

You have my deepest sympathies. Your father was lucky to have you there for him. Losing him must be very hard for you but I hope your memories of years past will help you cope with the loss.

[Al's Wife]

Ann,

Our hearts and prayers are with you. May he rest in peace.

Linda