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he’s taking 200mg…

when he was taking 100mg it didn’t work …

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thanks terri…

well, it turns out the doctor could not come up with conclusive results because when the doc did the biopsy, they couldn’t find any cells under the microscope… there were just too few to determine anything…

we will have to wait another 5 days for results…

however, preliminary results show no leukemic cells but i think they want to be sure…

does anybody know of anybody else with an empty bone marrow? i read up on this and it seems to be characteristics of aplastic anemia… hmm…

the doc mentioned hypoplastic leukemia though…

then i found out there is such a thing as hypoplastic MDS…

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HI lescolb,

My dad took thalomid for the last few months and was good until a few weeks ago… He was also TX free for the last 5-6 months or so.. and yesterday was when the bomb landed and now his counts are all over the place which means the thalomid has stopped working completely… I am guessing though…

My dad wasn’t that tired though – he overcame that… but the last few weeks he was really tired probably from anemia.

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hi krishananth,

talked to my mom and she read your case and you’re right patti… 1 pint is a bit low.

my dad when he first took thalidomide had very low hbg too and needed 3 pints of blood every 3 weeks. 3 bags will maybe give him a bit of strength… my dad needed 3 pints.. we were worried too.

he also takes vitamin b6 and folic acid (my mom asked me to put that in)…

before thalidomide, my dad took erythropoeitin but only 10,000IU and there was no improvement. However he was told that if thalidomide did not work alone, he’d have to include erythropoeitin… plus not a low dosage of EPO but a higher one…

anyway, when my dad took his 1st tablet he had side effects too… after a month, the dosage was increased to 2 and that was when side effects showed too… horrible ones but he weathered the storm…

according to my mom, my dad’s legs don’t have enough strength… could be due to thalidomide…

anyway, i hope i’m not too late in my reply..

hope your dad will be better krishananth. keep the faith

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wow jim, that’s amazing i’m glad you’re good

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Hey krishananth,

just an encouragement, my dad’s last transfusion was in july…

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Hi krishananth….

Thalidomide takes a long time to work. How long has your dad been taking it? Have faith…

We were worried too ‘cos my dad still needed tranfusions initially… some times the dosage is also not enough to “kick in”…

side effects unfortunately are unavoidable. MY dad felt really awful in the beginning and he can’t take medication.

How many tablets is your dad taking?

It takes time for the body to adjust but some times with side effects it shows that the medicine is working.

Of course we get scared when things look like it’s getting worse but you just gotta wait… that’s medication… especially with mds… nothing is a miracle cure with mds.

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Hello neil,

thanks for replying… yeah, we’re just living for the moment and pleased with the results.

I guess we have to remember how easily our body adjusts to medication…

thanks for the heads up though… i’ll keep it in mind.

i realised … am i mistaking rbc for hgb? can rbcs go up to 12?

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my dad took prednisolone for his tuberculosis fever and to reduce symptoms.. it worked and yes, he went through all that was said above.. he put on a lot of weight, his appetite was excellent, he got a round face…

during the time when he was still on pred, even though his rbcs were very low at around 7.5, he would still have energy, like a normal person almost…

he’s off pred now.. for a month to a month and a half… you can tell the difference, he’s eating less now… at least he’s not being artificially boosted. Pred did help to a degree, allowing his platelets and wbcs to balance up a bit.

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YUp, don’t take fevers lightly. they take forever to go away with mds..

My dad had a fever for a couple of weeks and then they discovered it was tuberculosis. By then, the TB was pretty intense.

My dad suffered with moderately high fever for 6 weeks or more – he tried taking medication for it but my dad would react badly to the medicine. In the end he was fed prednisolone… he’s off the pred now…

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My dad has been complaining about sweating too… why do they sweat? My dad’s condition seems the same as Bec’s …

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Yes, my dad drank Goji juice… I don’t know if it’s working … my dad is drinking a lot of other things too you see.

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my dad’s reaction to thalidomide has been extreme tiredness. Once he eats the medicine, he’ll conk out. Although he did last for about 2 hours last night. He’s eating the thalidomide every other day. So far, he doesn’t seem as pale.

He’s eating prednisolone to suppress his fever and any other side effects that might occur from him taking thalidomide and his TB medicine (yes…my dad reacts badly to medicines).

Do any of you take prednisolone?

My dad’s going to a naturopath too .. a couple of days ago he went for his second check up and it turns out the doc has seen a slight improvement in my dad’s case. don’t really know what that means. it sounds positive at least.

he’s also eating pineapple daily… hmm …

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Hey Patti,

It’s great to hear that the Chinese medicine man can help your mom. Would it be possible for you to obtain maybe… some sort of list of the types of herbs used? Maybe then we too can ask our medicine mans about it?

Hope to hear from you soon.

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well, the TB really was the most taxing for my father. He was bed-ridden for a month and he’s still got a persistent fever.

His reaction to the thalidomide was quite terrible as well – I believe his fever went up quite high. We’re making him take it alternate days now. Just in case my dad gets an allergic reaction … the doctor recommended that as well.

TB is curable as we know… my dad did react quite badly to one of the drugs and that caused him to get bad rashes.. it was very gross and then after that.. a week later, his platelets went down… and so did his white blood cells…

I don’t know if the reason his platelets and wbc dropped because of his TB.. or his allergic reaction to the drugs.. who knows.. the hemotologist said it should only affect his MDS a bit but who knows…i guess it shows my dad’s immune system was quite weak for him to contract TB anyway..

we don’t hear of TB often in Malaysia either.. it is prevalent though.

Noni was recommended by a couple of relatives and I don’t know if we can just stop it. They sell and believe in the powers of Noni… we’ll see. I personally don’t believe in it.

My dad did go to see a naturopath yesterday and he’s given my dad various things like cordiceps and other things… they didn’t tell the naturopath about the noni.

Well… his MDS i think is refractory anemia and I believe there were no signs of excess blasts but I’d have to go back to the report. My dad is going in for his transfusion tomorrow so maybe they should ask the doctor again.

It is rather disconcerting that my dad’s wbc and platelets keep dropping… the doctor does seem concerned too and that’s why he started my dad on thalidomide. I guess it gets trickier when my dad has TB on top of it all. The drugs are pretty strong as well so my dad’s just taking in so much right now… we should hope his other organs can take it. Luckily my dad never was a drinker.

Has anybody here had some other infections on top of their MDS?

I’m looking at signing up with one of the Centres of Excellence now in my region… the nearest would be in Thailand or Australia. Are there any asians here with MDS?

Thanks Patti… well, taking the pineapple is no harm so my dad’s taking that and he likes it.. he likes it better than noni. Hahah…

we’re looking into cord transplants and stem cells… these days there is a method where you don’t have to suppress the immune system that much… and you don’t have to take out the marrow either… you just inject new ones? Have you guys heard of this treatment? We’re trying to look at this now..

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