Hello, from Malaysia… problems, problems, problems…

[pigduck]

Hello,

I noticed this board is quite active and this is my 1st post. I hope to get to know all of you as time goes by.

My dad was diagnosed with MDS in September, 2005. He’s 57.

He’s been having transfusions every 4 weeks or so.

He was on Danazol at first but after a month, we switched doctors and moved on to erythropoeitin.

He was put on thalidomide yesterday (18/03/06).

His platelet count dropped quite low too and it’s below the average. I’d have to look at the test but it’s below the range that he’s supposed to be in… it was previously 140 (borderline of the range) but now it’s at 100 or so. I hope this makes sense.

Unfortunately, my dad has other complications too. About a month ago, my dad was diagnosed with tuberculosis. So he’s had side effects with the medicines … he’s developed 2 type of rashes.. from his TB medication and .. he’s had a persistent fever ever since. Since his TB he’s had to go for two transfusions and on Tuesday, he’ll be going for another.

In Malaysia, our doctor has not mentioned Revlimid and even with Vidaza, it’s just been approved.

I have read about the whole pineapple and sesame seed thing on this forum and also on the net and the bromelain seems to act as a thinning of the platelet.. so would it work then? In my dad’s case? Nonetheless, I have bought a few pineapples for him and he drank his first 1/2 today.

My dad’s drinking some leaf concoction, Noni juice, Goji juice, Gobor and I believe he may be visiting a Chinese medicine man soon as well. I don’t know if we are trying too many things at the same time that they cancel each other out.

I hope to hear from you soon about the pineapple and essiac. They both sound interesting but my dad’s already drinking so many things… on top of the soups that our relatives boil for us too. Just herbal soups.

Anyway, thanks again. Hope to hear from all of you soon.

[patti]

Hi,

Sorry to hear about your dad. Although your dad’s platlets are below normal, they are still high enough not to be too much of a problem. My MIL has been running around between 6K and 9K for many months and she’s still doing okay. Usually you don’t have to worry until they get below 20K and even 10K for some people. However, it wouldn’t hurt to try and keep them where they’re at. Do you know what type of MDS your dad has? Does he have any abnormal chromosomes?

My MIL sees a naturapath and has chosen not to do any chemo and she’s done quite well for 18mos until just recently. Our naturapath absolutely said “no” to the Noni juice. There have been some instances of liver damage and in some cases people needing new livers altogether as a result of the Noni. Maybe it’s the MDS that’s the complicating factor, I don’t know. But she put the kabosh on that right away. Your dad can do the pineapple and sesame seeds safely and many people have had success with it raising their platelets quite a bit. It worked for a long time for my MIL and than stopped working recently as her disease progressed. The bromelain is good to take as an enzyme but will not affect his platelets. It appears that fresh pineapple is required to make this work. However, bromelain is great for sinuses and digestion so go ahead and take it. My MIL does a high enzymatic therapy. She takes 10 pills a day that contain huge amounts of enzymes. She is also scheduled to see a chinese medicine naturapath next week to get some sort of chinese herbal formula.

Many people are taking Essiac on this board. For some it has worked wonders. My MIL isn’t noticing any difference but she’s still taking it because it does have good anti-leukemic properties. I’m not sure if you’re trying too many things at once but more importantly I would make sure that everything your dad is taking is good for him with this disease. Do you have a naturapath that can guide you with this? My MIL’s naturapath went down the list of what she was taking and took stuff off and added some stuff for us. Not likely anything is being “cancelled” out per se. The other thing our naturapath stresses is that taking too many pills or herbals can create stress on the digestive system and body as a whole. So that’s another reason you want to make sure everything he’s taking has a real purpose behind it, not that you’re just trying everything. My MIL has also found acupuncture to be a help. If you’re interested I can send you the list of what my MIL is taking. Just let me know.

I hope some of this was a help. We don’t see TB too much in the Unites States anymore. Is it curable where you live? That seems like the most important thing to take care of right now. Building your dad’s immune system should be your top priority.

Also, it will help us if you can find out what type of MDS he has.

Best wishes and we look forward to visiting with you as you walk this long journey.

Patti

[pigduck]

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..

[pigduck]

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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