[txnmomma]

Quote:

Originally posted by Mary4Mike:
Hello Alister,

Is your brother receiving treatment for his MDS? Night sweats can be a side effect of the chemo treatment when you are in your nadir. My husband experienced night sweats during the first few rounds of Dacogen.

Alister..

This exact same thing happened to my father when he took Dacogen. He would have BAD night sweats. He would soak thru pillows, sheets, blankets, anything that touched him was soaking wet. I mean soaking!!

That was a rought few weeks for us.

[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*

[txnmomma]

Quote:

Originally posted by alister:
Morning all, apparently “night sweats” are a common occurance with sufferes of MDS, I was wondering if anyone has found away of reducing the severity by change of diet etc?

My brother doesn’t see the specialist at Kings College for a further 2 weeks but is hardly sleeping due to the sweats.

Thanks

My father has had night sweats on and off for over 3 yrs. He soaks pillow cases and towels.

[txnmomma]

Viola.

I am so sorry for your loss.. I will be praying for you as well.

[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.

[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]

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.

[txnmomma]

Roger..
When were you dx’ed with MDS?
I got your email. THANK YOU!
I am wanting to look at your website more and more. It helps to know others with MDS. I have been researching ALOT about MDS

by the way, we used to live right outside houston, in Clear Lake, a few years ago. I miss Houston!

[txnmomma]

I am glad to hear my dad isnt the only one needing blood all the time.
He generally receives 2 units. If his RBC gets below 7 he usually will get 3 units. He averages ever 3 weeks, but I am really curious to get back and see the exact dates.

I am trying to learn more about MDS and how it affects the body.

[txnmomma]

Quote:

Generally, a person loses 1 unit (1 pint) per week and the marrow creates 1 unit per week. So if you need 2 units per 2 weeks that means your marrow is no longer producing viable rbc blasts.

This is so informative. Thank you!! I will pass this on to my dad. I need to go back and look at the calendar and check on the frequency of his blood transf.
I have young kids and am a stay home mother. So at times, I get caught with my life as a mom, and dont keep track of his blood transf. Shame on me!

[txnmomma]

Hi Russ..

It never ocurred to me that Neupogen could be the culprit for nausea.

Maybe calling his dr and checking into more meds [different ones] to control nausea is something I need to do.

He is coming home from the hospital. He was admitted Sunday b/c his hemaglobin was 3.2, lowest it has ever been. He received 6 units of blood to get his numbers up.

Thanks for the advice.

Wendy

[txnmomma]

Quote:

I would be interested to know if if decitabine can be administered to someone who is; anemic (8.5), has low WBC (0.5-1.0) and low platelets (>10,000)?

Mbrio..

My father is having Dacogen, he just got home 5 days ago from the hospital. This is his 2nd round.

He has LOW platelets [10,000-12,000]
his hemaglobin is low 7-8 and also his
WBC is very low.

hth!!

his platelets did grow.. they are up 2 points now!!

[txnmomma]

I am so sad to hear of Neil’s passing. When my father was first diagnosed, I posted a few questions on this forum and Neil’s reply was SO SO SO informational.

I will definitely miss him!!
*HUG* to MaryLou and family!!

[txnmomma]

Quote:

Originally posted by lbeachbum2:
Hi all
2 more months till my BMT ,, they are close to a match and then after harvest I will enter North Shore University Hospital on Long Island ,, I know that we hear more from people still fighting MDS but this time I would love to hear any stores of Cures , so if you or someone you know has been cured with a SCT or a BMT ,,, I would love to hear from you ,, lately all I have been hearing is sad stories … lets start this thread for successful stores ,, I hope to do my part by having a smooth BMT in march …thanks Mike

this is such an encouraging thread. My father will be having a BMT soon.. in the next few months. Not sure when.. still in the beginning phases.

Gonna bump this thread to the top!!!

[txnmomma]

Quote:

Originally posted by jonelle:
Hello, hope that everyone is doing well…
My husband has received 6 treatments of Dacogen and is doing fairly well. Dr is now giving him the option of a BMT. He is set up for a preliminary consult at Shands in Gainnesburg, FL.
Does anyone know any of the dark details…such as – when a patient is in solitary confinement is there really no TV, nor any reading materials allowed? And does the patient get catheterized & colostomy bagged for the duration of the stay?
Someone told me this, but I think it is proposterous! Any info would be greatly appreciated.

I dont mean to spawn off a new topic.. but how is your husband doing on the Dacogen?

my father is likely gonna have a BMT soon. His brothers are being tested for a match. But I am curious to know about the Dacogen.

Please PM with any info..

[Author]

Posts