[shellbivens]

Is that the same as IV Chelation? Daddy started doing this several years after his first (and only) bypass. He just didn’t want to go through it again. That’s when we heard about this treatment. He went for years (some 18 yrs I believe) without having any heart trouble. I know there are a lot of naysayers out there but when you reach the end of that rope….you find an alternative. Chelation therapy was brought up at our last chemo treatment and the doc said it wouldn’t hurt anything just removes excess iron from the body. He started last week and was planning on going tomorrow but the weather is bad here and we go to MD Anderson again next week. Sorry if this is off topic, I was lurking again trying to get some info so I can ask the doc intelligent questions. Will keep you posted and I hope everyone is blessed with something good this week!

[shellbivens]

Mary,

We are hopeful that this will help with the least amount of side effects. MD Anderson did a prior study using a larger dose and had some success. At the moment, daddy is considered Low Risk MDS, but he requires biweekly tx. Sometimes he doesn’t make it that long before he needs tx. He needs to get blood when he drops below 10.5 (per cardiologist). He tries to wait longer than that and just minimize his activities….he stays soooo tired. Take care all and know that everyone here is in our prayers! I am so grateful to have this community to reach out to for information. I have been away for awhile and just learned of Neil’s passing. We have lost such a wonderful person! I personally have received a lot of great info from Neil and he will be greatly missed. I didn’t mean to ramble on. Best of luck to all!

[shellbivens]

Mary, sorry I’ve been away from the board for a little while. The drug daddy is receiving is Dacogen (decitabine). He has only had issues with red blood cells. I don’t know the name of the study. We go to MD Anderson every 28 days. They did a BMB in Oct. prior to the treatments. He began in Nov. where he went in three consecutive days to get 2 injections. They started in the stomach, next day one arm and then the other. He was nauseous for about 14 days and his platelets increased dramatically, but then was okay and his numbers seem to be alright. He said the shots sting (like a bee) for a while and he gets very fatigued. Went in Dec. just received shots. Jan. had to have BMB again and then shots. We go back in Feb. for another BMB and shots. Just got the results from Jan BMB. Blasts are up. In April they were 3%, Oct. 1% and Jan. 4%. Not sure what all this means. Sorry I rambled so long. Hope this gives you some insight as to what we are doing. Oh, daddy’s doctor is Dr. Garcia-Manero at MD Anderson. It was odd that we got him, as we were told that he hasn’t taken on any new patients in years.

I’ve been searching and finally found the study that daddy is in. I hope you are able to use this link http://www.cancer.gov/search/ViewClinica…earchid=5709024 If not, just go to cancer.gov find the clinical trials and I believe you can search by Protocol ID which is DACO-026NCT00619099. I just happened upon it through a link from another site. Let me know if this doesn’t work and I will try to provide more information.

[shellbivens]

Mary and all who read this,

My daddy started participating in a study at MD Anderson in Houston back in Nov. He gets 2 injections per day for 3 days in a row. I believe it is 60 (don’t know if it’s mil, micro or what), just know that at first he was nauseous for about 14 days. His platelets were pretty high until the second round. He seemed to tolerate it better in Dec. Our (his) 3rd round was last week and his blood was a bit low (for him, anything under 10.5 he has to get blood–cardio issues). He got 3 units of blood yesterday and will get labs done from local oncologist to send to MD Anderson. I am eager to see what his blood level is at after 3 units. We go back the beginning of Feb. and he will have another bone marrow biopsy done….he had one at the beginning of the study and had one last week after the 3rd round. At least we will have something to compare. Hopefully all will go well. We were told that someone in the study went into remission after the first round of treatment. Some aren’t responding, but the doctor is encouraged that my daddy’s numbers are “jumping” around. Said that something is working. It gives us hope. Good luck to all and I hope this info helps someone.

[shellbivens]

Butch,

Check out HannaBayret #2850
Topic — Only Free (XXX Video Link)
Dated — September 28, 2007 09:57 PM.

Thanks!

[shellbivens]

For the shingles, go to the pharmacy and see if they have any BLUBORO or Domboro. It is a powder and when you mix it with water and apply to the lesions it seems to help. If the pharmacy does not have any, you could ask your doctor for some. It is originally used for foot soaks. But my mother gets shingles occasionally,only on her face and this seems to help along with a topical medication. Just mix a packet with about 1/2 cup h2O and shake. After dissolved, apply with a cotton ball. Put a lid on the container and use again and again. Always with a fresh cotton ball. Just seal and shake. Does the trick for my mom. When she feels/sees an outbreak, she immediately uses the stuff.
Hope this helps.

[shellbivens]

For the shingles, go to the pharmacy and see if they have any BLUBORO or Domboro. It is a powder and when you mix it with water and apply to the lesions it seems to help. If the pharmacy does not have any, you could ask your doctor for some. It is originally used for foot soaks. But my mother gets shingles occasionally,only on her face and this seems to help along with a topical medication. Just mix a packet with about 1/2 cup h2O and shake. After dissolved, apply with a cotton ball. Put a lid on the container and use again and again. Always with a fresh cotton ball. Just seal and shake. Does the trick for my mom. When she feels/sees an outbreak, she immediately uses the stuff.
Hope this helps.

[shellbivens]

June,

I just read your post and am just as outraged as you! My daddy pretty much refuses to do any kind of chemo treatment. He has been getting by on Procrit shots and occasional blood transfusions. His hemotologist and nurses FINALLY understand that he is NOT going to do the chemo. They pushed and pushed him for many months about starting chemo. Like I said, daddy is doing well, so far. He does have days when he knows his blood is getting low and tries to just take it easy. He goes to the doctor every Monday for blood check and Procrit shot. He did have to have a transfusion last week (blood was down from 11.7 to 10.3). He has heart problems and has a standing order from his cardiologist that states he is to receive a transfusion anytime his blood is below 10.5. Hang in there and try to keep your spirits up for your Mom & Dad.

[shellbivens]

Hello! I do have to add my 2 cents about IV Chelation. My daddy had his first heart attack at 38 (he is now 57). He had triple bypass and changed his diet (not that it was unhealthy). He has never smoked or drank…just had bad genes. Anyway, about 5 years after the bypass, he began having heart troubles again. The Dr. wanted to do open heart again and he said no and left the hospital AMA. We did some research and found out about IV Chelation. I will tell you, my daddy would not be here today to see 6 grandchildren being born and 1 graduate if it weren’t for the Chelation. Once he was diagnosed with MDS (RARS) in 2005, he went about 8 months before needed a transfusion. Due to his finances, he couldn’t continue the weekly Chelation. Shortly thereafter, he had his first blood transfusion. He has ended up having monthly transfusions and weekly aranesp/procrit shots. About 1 month ago he was able to start chelation therapy again. I am here to tell you that for him, it has worked. He has to have a transfusion about every 5-8 weeks. I take him to the Dr. every Monday for blood check & shot and this week his blood was down to 9.4 (the lowest it has ever been). He never had any chest pains or anything that would indicate low red blood count. He received 2 pints via transfusion last night and just landed in Las Vegas for the MDS Convention. I was planning on going with him & Mom, but at the last minute was not able to go. None of the doctor’s know he is chelating…it’s just not accepted in the medical field. WE KNOW IT WORKS (for him)!! The only treatment he receives is weekly procrit shots and occasional transfusions (if needed). This is just OUR experience. Do your research and see what works for you. Good luck to all!

[shellbivens]

Up until 1 year ago, my dad worked as a printer in a paper box factory for 27 years. He was not only exposed to, but periodically “hosed down” with some pretty nasty chemicals to clean him up before coming home. I can still recall the retched smell of chemicals from his clothes as mom sprayed him down with the water hose when he got home. At no time was anyone ever even offered PPE while working in this environment. To this day, I don’t think any of the workers are using PPE.

[shellbivens]

Stephen,

I am glad to hear some good news! Would you mind posting additional info regarding your Dacogen treatment? I am interested in knowing about side effects in particular. Thanks!

Shellena

[shellbivens]

Thamk you so much Patti and all who have posted on this board. I have received so much info that has been beneficial to my daddy’s treatment. We are all in the same boat and can benefit from others experiences & knowledge. God be with us all! Thanks for your love & support!!!

Shellena Bivens

[shellbivens]

June,

I will be attending the conference with my mom & dad. I am looking forward to dad having the opportunity to visit with people who have this disease. We still have so many questions about treatment options, side effects, etc. Look forward to meeting you.

[shellbivens]

Patti, I know where you are coming from. I’ve been “lurking” for quite some time now & have read the arguments. I will say this, if it hadn’t been for chelation for my dad’s heart problems, I don’t believe he would be here today. I strongly believe in some of the alternative treatments available to people…if they would just take the time to do their own research. I’ve already passed the Cod Liver Oil info on to my mom & dad. He is having the angiocath (msp?)done tomorrow afternoon & I plan on talking to his cardiologist about it. I accompany him to the MDS doctor every week. I feel they get tired of my questions. The way I see it…I only have one daddy and I will not feel intimidated for checking all avenues we may have available. What do we have to lose? Anyway, I just wanted to thank you for your input. God Bless you and your family.

[shellbivens]

I hope to meet a lot of you there. I feel as though we are family. In a way, we are. I’ve been “lurking” looking for answers for about a year now. Life is tough sometimes and we just have to make the best out of the hand we have been dealt. Thanks for the reply.

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