My Dad

[LuAnn]

Hello everyone, I haven’t been on the forum for a while but would like to reach out for some ideas. My dad has MDS RARS and was diagnosed in 1996. He was most recently on Vidaza and after the first 6 cycles was xfusion free for 3 months. However 2 weeks ago the Vidaza shots began again and he has had a bad reaction. In the past 3 weeks he has had 3 2-unit xfusions of red cells. His HGB goes up only 1 point to 8 but then drops a few days later. This is very new for him. He just had his 3rd xfusion today and we are hoping (praying) that his HGB will go up the 2 points it should and remain there for a few weeks. Has anyone experienced this? Obviously we are very concerned. The doctor is looking for trials that may be open to him. He does not have 5q so is not eligible for Revlimid. Any advice is greatly appreciated. Thank you all for being there.

[Sandy L]

Hi LuAnn,

Is your Dad a candidate for a transplant? Are you being treated at a MDS center? Maybe you should explore other options – read Patti’s Post.

Whatever you do, know that this forum cares and maybe someone can give you some advice. Post again and give more details. Any Chromosome abnormalties? Any other treatment since 1996? What was the bad reaction? Is your Dad using any Vitamin Supplements?

[sfongo1]

please read april 06 under patti. i left a reply about my dad’s MDS which is a side effect of his chemo for stomach cancer. i think chinese herbals work good if you can get yourself a good herbalist dr. we found that rehmannia made a remarkable impact on dad and his blood cts went up. hope this helps.

[patti]

LuAnn,

I would encourage you to look for a naturapathic college in your town or close by. Ask if they have a chinese medicine doctor. That’s who you would want your dad to see. If they don’t you can get on the web and search for the closest one. Mom has done remarkably well using natural medicine and is now starting to see a change in her tx frequency. She went really down for several months until we started the chinese herbals and now she’s doing great!

You don’t mention how old your dad is. Just curious. Mom is almost 76.

Take care.

patti

[LuAnn]

Thanks everyone for replying! I read Patti’s post and am excited. My father is 82 (will be 83 in May) and has no chromosome abnormality. I don’t have all the specs on his MDS but will get them and add to post. He is on Exjade and gets Neupogen 2x/week and Procrit 2x/week. He received one 6-cycles of Vidaza but that made all his numbers jump around. However he was xfusion free for 3 months. About 2 weeks ago the dr. started his 2nd cycle and after 7 shots in a row, his numbers started to jump. Today his HGB was 7.9 after receiving 2 units of blood yesterday. This is his 3rd xfusion in 2 weeks. Doc thinks Vidaza is still in his system and affecting the xfusion. I hope he’s right. I read Patti’s post and am very excited. I live on Long Island in NY and will stat to look for a College of Chinese Medicine. Thanks for the encouraging news Patti and good luck to all. I have been on and off this forum for a number of years and am always amazed at how knowledgable everyone is. Thank you for sharing.

[patti]

LuAnn,

Lucy is in New York too and she’s looking for a chinese medicine guy too so maybe if either of you find one you could send the name to the other. Even if you’re far apart you’d be able to call the one to get a recommendation closer to home.

Patti

[eve]

LuAnn

who is treating your dad

we are from long island too

eve

[LuAnn]

Patti,
I’ve started researching the net but there is limited information. I’ll start calling some folks tomorrow to see if I can find a chinese medicine guy. I’m not sure who Lucy is but I will definitely share the name of the guy I find. Dad is 82. His HGB went up to 7.9 from 7.2 after 2 units of blood. We are meeting with the doctor tomorrow to discuss alternative. We will be looking into Thalidomide and Revlimid as a compassionate medication. He is not 5q so not eligible to receive the Revlimid. Thanks! I’ll keep you updated.

[Rackon]

LuAnn, my 86 year old father does not have 5q- and he is on Revlimid. (He has CMML.) There are others on it that don’t have 5q- either.

He was on Aranesp for over 3 years and was doing very well until January, when even weekly shots coudn’t keep his hg up.

He started 10 mg Revlimid 2 weeks ago but his hg and platelets have taken a dive (as often happens on this drug) so he is now off it and won’t resume until his counts go back up. He will then go on half dose.

Question for Patti – do you feel the Chinese herbals to be of much greater benefit than the essiac and pinneaple your mom was on before (or is she still doing that?).

Don’t know of any Chinese herbalists in Indianapolis but I have a colleague at work (cancer survivor) that highly rcommends her naturapathic physician.

[seekay]

Dear LuAnn,

There is an excellent physician in NYC named Leo Galland, MD. He practices holistic medicine, although he is a licensed MD (Harvard U, NYU Med). He may know of a respected Traditional Chinese Physician. Also, you may want to speak with him anyway, to see if he can help you. He treats adults who suffer chronic illness, such as cancer, that are not easily treatable through conventional means.

Sincerely,

CK

[patti]

Rackon,

I do believe the chinese herbals are doing much more than essiac and pineapple but there’s a reason for that. Chinese medicine uses very different thinking than western medicine. I’ll see if I can explain it but I don’t know how well I’ll do. I believe the essiac and pineapple were helpful, but they were not meant as a cure. Chinese herbals are aimed at curing. In Chinese medicine they treat parts of the body so differently. For example: Mom’s doc is treating her “spleen.” But not her physical spleen. It’s a section of the body that in chinese medicine is related to blood and bone marrow functions. It’s a whole different ball game from what we as Americans are used to. Also, mom and I are christians so we are very very careful with chinese medicine. We actually told our naturapath not to cover anything with us regarding guided imagery, meditation, chi, yen and yang, etc. We told them they could treat what they wanted but we would put limits on certain things and certain discussions. Chinese medicine is also somewhat of a “religion” for lack of better word. It’s a very spiritual practice and we wanted to be very careful with that. I don’t know if any of that made sense but hopefully it did. I do think the essiac and pineapple helped but they certainly weren’t heading us towards a “cure.” And for mom, her disease had progressed so far we weren’t sure that either of those things was helping anymore but we were afraid to stop for fear of upsetting the apple cart and not being able to get it “uprighted” again. Definately start with your friend’s naturapath for getting a recommendation. Even American Naturapathy is very different from chinese medicine.

Seekay, bless you for knowing someone in NY. Surely somehow LuAnn and Lucy can get a recommendation that way.

All the best,

patti

[LuAnn]

Hi all,
Well dad went to the dr. today and his HGB went from 7.9 to 8.2 Not a major jump but that means he will be xfusion free for the weekend. We’re hoping the Vidaza is out of his system and that his HGB will go even higher. The dr. reviewed 3 options; thalidomide, revlimide and a clinical trial at Cornel headed by Dr. Feldman. We’re going to get the Thalidomide and the drs office will try to get Revlimid on a compassionate basis though there is no guarantee that will happen. We’ll check out the clinical trial but it involves placebos and not sure that is what my dad wants. I’ve been researching chinese medicine and found an acupuncturist right in town that treats many cancer patients. I made a consultation for this Sunday and will let you know how it goes. Take care everyone and God Bless.
LuAnn…

[patti]

Hi LuAnn,

An acupunturist is helpful but it’s important that if you want to use the chinese herbals that you find someone who is a “chinese medicine man.” I would ask the acupuncturist if he knows one. Mom’s naturapath also did acupuncture on her but it was more to relieve symptoms and try to help her bone marrow get moving but she said she was doubtful that would do it, that’s why she wanted us to see her chinese medicine guy. Because his focus is healing, not abating symptoms. Make sure you clarify that with the doctor.

Let us know how it goes. Acupuncture can be very helpful!

patti

[seekay]

Hi LuAnn,

I agree with what Patti says. There are trained Chinese doctors who do both acupuncture and treat with Chinese herbs. You want to find someone who is trained in both, ideally. There is an excellent doctor here in Los Angeles, Dr. Baolin Wu. He has a degree in Chinese medicine from a university in Beijing (can’t recall the name offhand), a Ph.D in neurophysiology from Kyoto University in Japan, and also is a Taoist master who uses QiGong therapy in his practice. I had back pain and numbness last year from a bad car accident, and he made me feel much better after just one visit, and pretty much “cured” my pain and numbness after two months of visits, three times a week. I received acupuncture (probably in conjunction with QiGong therapy, although he didn’t tell me that) and Chinese herbs. He is an expert in his field, I believe.

After taking his QiGong class, I understand that Chinese medicine is based on 5,000 years of observation of nature and direct application. Very different from Western medicine.

Also, I would suggest checking out the Gerson therapy and orthomolecular medicine/orthomolecular oncology which you can read about elsewhere on this forum.

Good luck to you,

CK

[Author]

Posts