[patti]

Whoa. Wasn’t trying to be insensitive. I was speaking strictly about my MIL. I don’t remember saying Ellie’s advice wasn’t valuable, just that mom probably wouldn’t pursue it with her doctor because that’s how my MIL is. (And BTW, we have already mentioned this to the doctor yesterday, she didn’t have a clue what the numbness and black was and the doctor had no intention of pursuing anything either).

Caroline, I certainly wasn’t trying to determine where you’re dad is at. Mom and I can tell where she’s at from where’s she’s been. Raynoud’s syndrome would be different for someone whose already been on blood thinners because there would have been other factors involved (ie, heart – if that’s what the blood thinners were for or whatever).

Good grief, shirlsgirl. Sorry if I didn’t dance on egg shells for everyone around here. Mom and I are very much realists because we have to be. If you have read anything about mom/me you’d know she and I have other things to take care of besides this disease. So when I say we feel like it’s the end of this disease, we feel that way for my MIL – not for anyone else just because they might have something similar. Someone elses circumstances could be very different (ie. heart problems or something). Please, I was just looking for information and then sharing what I found about a topic.

People have to learn to eat their own meat and spit out the bones. If it doesn’t apply then don’t take it personally. A lot of people have disagreed with me about how I think this disease ought to be treated but I’m not running around with my feelings hurt.

And Caroline, I am really sorry if how I said something was hurtful. It was certainly not intended.

Patti

[patti]

Caroline,

I think I may have hit on something last night. There is something called Secondary Raynoud’s (not sure of that spelling) Syndrome. It is caused by reduced blood flow to the extremities and sounds very much like what my MIL has. Can your dad shake the blood back into his hands? My MIL cannot. She just has to wait out the hours it takes to get the feeling back. Although the web information says the skin can turn blue I’m guessing that mom’s turning black is caused by blood pooling in her thumb and the vessels being so constricted it cannot flow back out of the thumb.

Secondary Raynoud’s is usually caused by a connective tissue disease but not always. It is always related to something being wrong in the person’s blood vessels (which would be the case with MDS patients). There really isn’t any treatment that would help in MDS patients with this syndrome unless they have the underlying connective tissue disease (ie. lupus, rheumatoid arthritis, etc).

Ellie, we are not actually going to pursue anything with regard to this particular symptom. We can tell it has to do with blood flow and heart function but there really isn’t any reason to do anything. She’s too low in blood volumn to be able to do anything meaningful with circulation. We were mainly just curious what this was.

I’m glad to at least hear mom isn’t the only one with it. My general feeling is that it’s the result of the end of this disease coming.

Thanks Caroline for sharing about your dad. Sounds about like the same thing. It would sort of make sense that your dad’s has gotten worse with less blood thinner because that would keep the flow of blood to his extremities very smooth. Removing the thinner would muck things up a little bit.

Best wishes to your family. Isn’t it funny that our parents still treat us like little kids sometimes? Of course, this is my MIL so I’m not sure I can claim that.

Patti

[patti]

Frank,

It’s good to hear from you! I’ve been thinking about you. I’m glad you’ve been able to leave your girls with family that you feel like can take care of them. Take heart! It won’t be long and you’ll be able to be with them again. I’m glad your trip to China was good. Keep us posted on how you’re doing along the way. Maybe the vidaza is working, huh?

As a side note: my mom just recently returned from a month in China and she brought me some fabric (I’m a seamstress) and wow! The fabrics there are beautiful!

Patti

[patti]

Hi Simon,

I was taking ashwagandha for my pituitary gland and adrenal glands for about 6 months. I don’t know if there were any internal changes in those glands (they thought I might have a pituitary tumor and I didn’t want surgery) but I did feel better. I was struggling with having no energy at all and severe hormonal imbalances (because the pituitary controls all hormones)and I did have a noticeable difference in energy (I wasn’t running marathons but much better then without it) and did feel more emotionally level.

Not sure how it would help with this disease (MDS)but I’d say do the research and if it bares out some good information give it a try. There’s really nothing in ashwadgandha that would be contraindicated.

BTW, we have many friends from India (the hi-tech world) and they checked with several doctors in India about MDS for my MIL. Interesting enough, the doctors were well aware of MDS and said the only “cure” they have is revlimid. Not sure how they get it in India but I do know it’s limited to the wealthy few from what our friend said. What I found interesting was that they really didn’t have a “natural” thing that would help MDS. Since we are doing natural stuff we were looking for some help from our Indian friends.

That’s probably more then you wanted to know but I thought it was worth sharing.

Best wishes,

Patti

[patti]

Randall,

My MIL was diagnosed a year ago with RAEB-t bordering very close to AML (she’s still borderline AML). The doctor told me she had 4-6 months to live. Well, lots of supplements, diet changes, and frequent transfusions (5 wks or so apart) and she is still with us and really feeling quite well most of the time. Although she doesn’t have any other health problems. Don’t let the doctors write your dad off yet. If he takes good care of himself he can live more years and still feel relatively well.

I can’t answer much about the Vidaza other then there have been some folks on the list who’ve had good success with it.

Best Wishes,

patti

[patti]

Thanks, medowmuffin. I absolutely believe most cancers are preventable with diet. I have to say most because my niece had a cancer gene and died at 11. Her mom died at 39. Not sure diet will affect those with gene mutations born to them. Anyway, I’ll look it up on amazon. Thanks

patti

[patti]

Lindajo,

I have to agree with you. My MIL and I were talking the other day about the new treatments for MDS and we finally settled on this: All of these treatments are only a few years old. Most of them have less then a 30% success rate. If we took a test in school and only got 30% we would be flunked. I maintain that doctors are using people with this disease as guinea pigs for their new drugs. Honestly, there are only a few people on this list that can actually say they were helped by the drugs. VERY FEW. I think we’re always safer taking the natural/supportive care approach then to act as guinea pigs for drug companies that want to make a lot of money.

To this day mom’s doctors refuse to believe she’s still here because of how she’s taking care of herself. And just last week they told me again her prognosis is still only 4-6 months (umm… it’s been more then a year). I don’t disparage those who try the drugs, it’s just not for us.

Just my two cents worth.

[patti]

Tahoe,

I asked mom’s doctor today about this drug. She was going to check into for me. Mom has very low platelets so this would be a good drug for her, if it works. I’ll let you know what I find out.

patti

[patti]

Hi John,

Out west here we have a saying about spotted owls. It goes something like this: save a tree, wipe your bottom with a spotted owl.

It’s a little more crass then that, but my internal constraints won’t let me write the real words.

Preach the oil, brother! I keep waiting for drilling in Alaska.

patti

[patti]

Tah,

I’ll chime in here. My MIL takes organic beef liver extract for her reds. It’s a pill like a vitamin so no big deal to take. I can find a place for you to buy it if you’re interested. Also, recently she started procrit and it’s working! I show surprise because she took aranesp for 9 months and it did nothing. I am surprised they transfuse you at 8. Do you feel bad? They don’t transfuse mom until about 6.5 or 7 but she always feels good. So she’s either lying or has the grace of God on her side for her dependent daughter.

John, I am surprised you can’t tell what’s helping you. We can really tell with mom what works and what doesn’t. She takes a lot of actual pills/tinctures but we can almost always tell what’s helping and what isn’t. We farely regularly go through her routine to take stuff out and add stuff in depending on how she’s doing. We’ve also done some process of elimination stuff which helps.

Tah, I’m encouraged by how long you’ve had this. We originally didn’t think mom had 6 months and now I’m thinking maybe we have many years. Whew! What a relief.

All the best,

patti

[patti]

Carrie,

I was so taken by how things were when your father passed. I can’t think of a better way to go into eternity then surrounded by loved ones singing (especially “happy birthday!”) It brought a smile to my face for what a peace it must have brought him.

Our family will pray that these next weeks and months will bring consideration of things eternal and comfort for your hearts. It’s so hard losing a parent…

patti

[patti]

Carrie,

Wishing you strength through this time. It’s never easy to say good-bye. We will pray for your dad and family during our family devotions this evening.

Patti

[patti]

Christina,

I saw the neupogen thing on the web somewhere. I’m kicking myself for not printing it because mom’s doctor doesn’t believe us either. You know what, I wouldn’t worry if the doctor believes you or not. Just tell him what you want to do and tell him you’ll change doctors if he won’t let you. I don’t think you’ll find a doctor that will admit any of these bone marrow drugs will do harm. It’s the big pharmaceutical thing. There’s money to be had and no one is going to tell the negative. Just look at all of the drugs they’ve had to pull off the market in the past few years. I will do a search again for the neupogen/blasts info and see if I can find it and get it posted here. I would just encourage you to do your research and then tell them what you want. Our doctor jumped as soon I said I would find a doctor who would do what I wanted.

Good day,

Patti

[patti]

Kerry,

Praise the Lord! What a blessing to hear this. I am very pleased for you. Hug your dad and go do something fun today after all this stress!

Patti

[patti]

Hi Terri,

Yeah, mom takes all kind of supplements. I guess I should put that in my signature line. We worked with a guy in CA with her supplements, etc. She juices, takes about 50 supplement pills a day and really takes good care of herself. I’m sure you and Bob feel this way – it’s so time consuming! She said she feels like all she does somedays is juice and swallow pills.

What’s weird with the aranesp is it’s all the doctor would try and we are the ones that told him to stop and we are the ones who requested we try procrit. I think this guy is an idiot. So does mom for that matter. We haven’t worried too much about it since she sees the nurse practioner and really likes her.

Good day!

Patti

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