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MDS Myelodysplastic syndromes

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  #1  
Old Wed Aug 22, 2012, 05:01 PM
yaka yaka is offline
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Unhappy My Mom

Hi,

I have been lurking here for a while. My mom was diagnosed with MDS in October 2011. She is 81. Two years ago she was treated for Lymphoma and was treated with Rituxan. She started getting tired this fall and went to onco. That was when she was diagnosed. She did a month of Revlimid, but couldn't take it. It was killing her. Since the end of March she has had transfusions every two weeks. About a month ago the doctor told us she should be put on Hospice care. Then he give her 60 mgs. of prednisone. It was the best three weeks she had in a very long time.

Last Friday, she had a blood transfusion. She told the onco that she felt like she had a cold. I was surprised he didn't start her on antibiotics then. A night later she spiked a fever and was taken to the hospital. She has been there since Sunday. They keep giving her antibiotics, but the infection is not going away.

Today they gave her platelets and hemoglobin. My mom also told me that she realized that they had reduced her prednisone to 10 mgs from 60. I called the dr. to ask why and he couldn't give me an answer. I am not fond of this doctor.

Any advice on how to help her would be so appreciated. This is much harder than I ever thought it would be. I am a 3 time cancer survivor myself.

Thank you.
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  #2  
Old Wed Aug 22, 2012, 11:03 PM
maria&lola maria&lola is offline
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I'm sorry I'm not knowledgeable enough to offer any advice, only prayers for you and your mom.

My mom was diagnosed in December and had an awful time with the Revlimid as well. She's now on her second cycle of Dacogen.
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  #3  
Old Thu Aug 23, 2012, 04:22 AM
Birgitta-A Birgitta-A is offline
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Prednisone

Hi Yaka,
It is not common to give 60 mg Prednisone during 3 weeks - as you understand the dose has to be tapered to avoid withdrawal symptoms.

Prednisone increases infections so they probably have to decrease the dose when they try to fight the infection. Then your mother will get severe withdrawal symptoms.

Now when the Prednisone is decreased we hope that the antibiotics will have effect!
Kind regards
Birgitta-A
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Old Thu Aug 23, 2012, 06:28 AM
yaka yaka is offline
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Hi,

I asked the doctor yesterday and he never told me that. It makes sense. I wonder why he didn't tell me the reason. I didn't know it might inhibit the The production of white blood cells.

I spoke to my mom a little while ago. It is definitely pneumonia. I wonder why it took so long to show up. She has been in the hospital since Sunday. What could possibly change in her treatment. She has been on levaquin since the start. Would they change the antibiotic or up it. Or is this the beginning of the end?

My mom is beyond upset and in a bit I will have to pass this information on to my dad. Not a good start to the day.

Any advice would be greatly appreciated.
Yaka

Last edited by yaka : Thu Aug 23, 2012 at 08:47 AM. Reason: Added text
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  #5  
Old Thu Aug 23, 2012, 03:16 PM
Birgitta-A Birgitta-A is offline
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Prednisone

Hi Yaka,
You know Prednisone doesn't decrease WBCs but "This drug can suppress your immune system. This can raise your risk of getting an infection or of reactivating an old infection. Your doctor may advise you to avoid people who have infections (especially measles or chicken pox) while you are being treated. Be sure to let your doctor or nurse know right away if are exposed, or if you have any signs of infection, such as fever, chills, pain when passing urine, new onset of cough, or bringing up sputum. This drug can also suppress symptoms of infection, so call the doctor even if symptoms seem minor."
http://www.cancer.org/Treatment/Trea...ugs/prednisone

We can still hope that they have choosen effective antibiotics.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, supportive therapy until 2010. Since then Thalidomide + Prednisone 5 mg/day with positive results.
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  #6  
Old Thu Aug 23, 2012, 06:50 PM
Sally C Sally C is offline
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Hi Yaka,
My husband had been on an anti-viral med after chemo treatment but still got a life threatening infection. After 2 weeks of 24/7 IV's of antibiotics in the hospital and twice a day IV's for 2 weeks at home they got rid of the infection. When we asked for refills for the same anti-viral med our oncologist told us she would never put a patient back on the same anti-viral med after it allowed an infection. She changed to a different one and the infection never came back.
I wish you the best.
God Bless,
Sally
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  #7  
Old Thu Aug 23, 2012, 09:42 PM
yaka yaka is offline
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My mom is on Levaquin. She has been on it since Sunday. What would the dosage be?

I haven't asked for the detailed record of her meds.

She was up at of bed for half the day. She can't sleep because the I'VE Saline keeps waking her up to pee. At least she is able to get up and go to the bathroom.

Yaka
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  #8  
Old Thu Aug 23, 2012, 10:39 PM
wilmasdaughter wilmasdaughter is offline
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Your mother

I feel for you. MDS as a disease has no rhyme or reason. There is no definitive treatment. Hematologists have to try one thing and if it doesn't work, try something else. Your Mom's age is also working against her as the treatments available are often not as effective or safe in the elderly. My advice to you -- remain an advocate for your mom's health, read all you can about MDS, but know that in the end, treatment is a guessing game. Take care.
__________________
Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06
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  #9  
Old Fri Aug 24, 2012, 09:56 AM
Sally C Sally C is offline
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Dear Yaka,
I can't answer to what the dosage should be but I'm glad they changed her antibiotic.
As to her not being able to sleep due to needing to go to the bathroom - could they not put a catheter in to help with that? Maybe not due to the concern for infection but you may want to ask.
I wish your Mom the best.
God Bless,
Sally
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  #10  
Old Fri Aug 24, 2012, 03:23 PM
Birgitta-A Birgitta-A is offline
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Levaquin

Hi Jaka,
The common dosage for severe infections seems to be Tabl. 750 mg/day.
http://www.rxlist.com/levaquin-drug/...ons-dosage.htm

You know it is very important that we get enough fluid - that will have a positive effect on the infection too. Perhaps she could try to drink more so she doesn't have to receive fluid IV?
Kind regards
Birgitta-A
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