Having to be on oxygen 24/7

[txnmomma]

I just wanted to throw this out there and ask everyone. In signature, my father is 59. Dx’ed in 2004 with MDS. Had 2 rounds of Dacogen. In last couple of months, his saturation levels had been low. Sometimes as low as the 60’s.

It seems now that he needs to be on oxygen all the time. Are other MDS patients needing oxygen therapy?

What doesnt help the situation is that he has blood clots in his legs. He cant be on blood thinners b/c of a previous head trauma injury.

I dont know if the need for oxygen is b/c of MDS or the blood clots.

[jaxem]

wendy
I assume he’s had CT Scans of his lungs. What did they show?

[txnmomma]

jack..

He has been in and out of the hospital recently, his saturation levels go WAY down, to the 60-70’s. He has had many CT scans of his lungs, there is no blockage, no blood clots of any kind.

All of the dr’s that are treating are going back to the MDS as the reason why he is needing to be on oxygen 24/7

He is near the “end” and it saddens me at times.. I just wondered if other MDS patients were on oxygen.

[Lydia]

Yep, mom is on oxygen and has been for the last 2 weeks since she was admitted to the hospital. Sometimes the mask when oxygen levels very low – then improves to only the nose piece, etc. I think with MDS the blood can’t supply enough oxygen. It weakens all your organs. This is horrible. Hang in there.

[Mary4Mike]

This is just another input on this subject. We asked our doc about giving oxygen when HGB is low and he said there wouldn’t be any benefit because there aren’t enough red blood cells to carry the oxygen throughout the body.

[txnmomma]

Quote:

Originally posted by Lydia:
Yep, mom is on oxygen and has been for the last 2 weeks since she was admitted to the hospital. Sometimes the mask when oxygen levels very low – then improves to only the nose piece, etc. I think with MDS the blood can’t supply enough oxygen. It weakens all your organs. This is horrible. Hang in there.

Thank you for this post!! Its encouraging *hugs*

[txnmomma]

Quote:

Originally posted by Mary4Mike:
This is just another input on this subject. We asked our doc about giving oxygen when HGB is low and he said there wouldn’t be any benefit because there aren’t enough red blood cells to carry the oxygen throughout the body.

this is interesting. My dad’s saturation levels goes WAY down into the 60’s. He is needing oxygen.

[Mary4Mike]

Wendy,

I also found this interesting. We also asked our first hemo about oxygen and he said we don’t give oxygen for the shortness of breath that results from low HGB. I must comment that Mike’s saturation level is always good (97,98).

Is your dad’s low oxygen level a symptom of MDS or does he have other health issues such as heart disease? I hate to think that this is something else we have to look forward to.

Stay strong. You sound like a wonderful daughter. Our prayers are with you and your family.

Mary and Mike

[txnmomma]

Mary..

My dad’s low oxygen is a symptom of MDS. He doesnt have another other problems with his heart or lungs. Those are both healthy. He has had an echocardiogram of the heart and had many lungs scans, both CT scan and nuclear scan.

Let me ask you, I see your husband is on Exjade. Is that working for him?

My father is having weekly tx’s and I think Exjade would help him. He has a RX for it but I havent gotten him to take it. He doesnt want to b/c he gets SO SO nauseated. He took it for about a week.

Is your husband taking Dacogen?

It’s great to meet others who are just like us. It’s hard at times, but I have to do everything I can for my father. *hugs*

[Mary4Mike]

Wendy,

My husband is currently taking a break from Exjade, however, he never had a problem for the over 2 years that he took it. His ferritin level is still elevated, (around 1500, has been over 3,000) but our copay is close to $2,700 a month so he is choosing not to take it for awhile. Our hemotologist is okay with this. We still have some on hand so when he has a TX, he comes right home and takes 4 tablets. The doc said that is when the iron is really moving around and he would benefit from taking it then.
Mike has had 84 units of blood and usually needs to be TX’d every 4 to 5 weeks now. Before he began Dacogen in December 07, he was TX’d every 2 weeks. He will begin his 8th cycle in a week, but this hasn’t been without medical problems. He has been hospitalized 3 times with low counts, fever, and pneumonia. He had an abcess on his liver that seems to have resolved. He has had a lot of bone pain since beginning Dacogen (back and shoulderblade). He started with 40mg. for the first 3 cycles and has had 30mg. for the last five. We are going to ask about reducing to 25 or 20mg. this next time because he is still having long drawn out nadirs. We have been in contact with a doc at Cleveland Clinic where they are conducting dacogen dosing clinical studies. He claims it is more important to take a lower dose so that the nadir does not keep you from beginning the next cycle on time. In other words, staying on course with the timing of the cycle is more important than the dose. This has been the problem for Mike. His counts usually keep him from beginning the next cycle on time.

Boy, I didn’t mean to go on and on like that. You just asked a simple question, sorry .

I can understand you wanting to do everything you can for your dad. I feel the same way about my husband and my parents. I thank God that I am healthy and can be there for them. I consider it a privilege.

Take care,
Mary

[txnmomma]

Quote:

I can understand you wanting to do everything you can for your dad. I feel the same way about my husband and my parents. I thank God that I am healthy and can be there for them. I consider it a privilege.

Mary..
Thank you for writing this. I agree with you.
My mother and I are caregivers to my father.
My kids are very encouraging and love to be around “papa”

This is very encouraging for me!

Wendy

[Jack_dup1]

I have been on intermittent O2 for the last year, some times I don’t need it for as long as a week or two and then my 02 will drop to 70 and 80’s. I always use O2 at night. I have had several ct scans of lung, everything neg. They don’t have a clue what causes it. I also pass pulmonary function tests.
Jack

[Mary4Mike]

Jack,
Are you still doing Dacogen, and if so, what dose and cycling length? How are you handling your nadir time? How many cycles have you done?

Thanks,
Mary

[Mary4Mike]

Jack,
I just read your other post to me. I see you are on your 5th cycle, but any other info would be appreciated about you Dacogen experience.

Thanks,

[Jack_dup1]

Hi Mary,
Dacogen experience has been mostly positive, main problem is fatigue after 3rd day, after a week or so I feel pretty good.
Platelets drop to about 11 then rebound to 130’s, have not seen those numbers in a few years,had a few platelet tx.
Hbg no lower than 9.0, 2 Tx.
Whites are a problem, usually drop to around 2, then increase rapidly. When I started this 5th cycle they were at 93.
I had a six pound spleen removed after the seconne cycle, what a horrible experience, they had to go in twice because of clots, glad I did it though.
Regards
Jack

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