As a fresh goatrevolution.com user i only wanted to say hi to everyone else who uses this site

I have to second Marla on those teas. I wish we’d known about them when my MIL was going through her MDS/leukemia. My MIL did take essiac tea for awhile but she should have stayed on it and I believe she needed to make it stronger. But Marla can correct me on that if strength doesn’t matter.

Have you tried juicing fresh pineapple for your mom to help with her platelets? My MIL would get a 10K boost in platelets if she ate or juiced a fresh whole pineapple a day. I know it’s a lot, but it can help. The pineapple seemed to work for my MIL for about a year before it stopped.

The only other thing I can think of for platelets is this stuff mom’s chinese doctor gave her. They use it in China during battles when a soldier is bleeding on the battlefield. They can put a pellet in their mouths and it will instantly stop bleeding until they can get medical care. We used in on mom a few times to try and prolong her platelet transfusions. If you’re interested, I can send you Dr. Kou’s contact info. Unfortunately, he’s very chinese and very hard to understand on the phone, but he might be able to help a little.

Do you know where your mom’s blast percentage is at? Did she have RAEB that transformed to AML or did she have some other type? My MIL lived over 2yrs with well over 50% blasts in her marrow. Are all three blood affected? There are foods mom juiced for the different blood lines. Juicing beets are excellent for red blood cells. Another thing I wish we’d taken more of was chlorophyll. It’s a good hemoglobin builder. Mom took it, but not much and not often. I wish it had been one of her staples.

Marla, do you know if chlorophyll affects iron? That could be a negative to the clorophyll if iron overload is already a problem. Kaye, do you know where your mom’s ferritin level is? Does she get RBC transfusions very frequently?

patti

I just sent off an email to you privately since here in LA we’re about 3 hours behind your time. So I figured it’s a bit late there. One thing I didn’t mention in my email was whether you have looked into Essiac Tea and Pau d’Arco.  If you do a Google search for those teas and cancer, you will likely find some hits.  My dad has multiple myeloma and appears to be benefiting from the combination of those two teas. Multiple myeloma is a blood plasma cancer for which the current medical community has no cure. Even bone marrow transplants are not considered cures in the medical community for multiple myeloma.

Hopefully someone else will see your post here and contact you.

Take care,

Marla

My mother was diagnosed with MDS a few years ago and now is at the point where she is receiving platelet transfusions every other day. Her last count was 8,000. The doctor said she might have 6mos to a year to survive based on the maintenance treatments. She is receiving all through a picc line. Her diagnosis now is refractory mds with excess blasts and acute leukemia. I can not accept his conclusion about her life. There has to be some natural treatment that would help to build or maintain her platelets and blood count and extend her life. Please I need help. Can someone with experience call me at 443-567-2596 to discuss options further. Thank you, Kaye

Marlakins

Anyway, that is amazing that your MILs hgb is holding out at 8. Actually the hct reading of 23 is pretty much right in there with an 8hgb. Basically, the hct “normally” is the hgbx3. So 8×3=24. Now the difference between the hgb and the hct is that the hgb is a measure of the amount of hemoglobin in the blood, while the hct is the mean volume of reds to plasma. Many times the hct is skewed with people with bone marrow disorders because the size of our red cells are commonly not the normal size and that skews the hct reading from the normal hgbx3 formula. The reason why it skews it is because if the red cells are large (meaning that they are immature) then it takes less red cells to fill up the sample since they are larger than normal. So a high hct reading could be misleading if you dont take into account the MCV of the red cells. And conversely, if the reds are smaller than normal, then it could take *more* red cells to fill up a sample.

Thats so nice that you were able to reduce your MILs meds! I can image how much better she feels. I personally dont like feeling out of it! Ha!

How fun to go on a trip! Im sure youll have a great time! I wish I were taking a trip! Tell us about it when you get back!

Andrea, I am so happy that Robs trip was such a success! And his trip was major, not some baby step! Heres to living more fully in 2007!

Regarding the Lunesta, cripes! Now thats teaching the kids early! Fortunately we dont watch much TV at all in this house. I mostly see those commercials at my parents house! Now talk about TV watchers. . .

Okay, ladies! I guess thats about it for now. Did you hit the after-Christmas sales? Hee hee. I mingled a little in there, but maybe Ill try again after New Years. Ill see if anythings left by then. . .

Oh, one other thing. Since this thread has already gone over 100 comments, I was thinking of starting up a new thread to continue. Ill start up a new post on the first of January to continue Steeles MDS Chronicle for 2007, okay? So look our for it, and we can continue there after the close of this year.

Hugs!

Marla

I’m so glad you had a good Christmas–and that you know some of my fave hymns! I don’t know “Jesus Led Me All the Way”–have to look that one up. My Hymn for Hard Times is –I Need Thee Every Hour. That pretty much sums it up. (Or should that be ‘every minute”? Or “every second”?)

Speaking of benadryl, have you ever tried that for sleep? I used it and found it non-addictive and effective. Only thing I noticed was that it was harder to wake up. But it definitely helped me through some hard nights, and I think it’s milder and safer than Ambien.

And while we’re on the subject of sleeping pills, my med school son told me this story: You know Lunesta, the sleeping pill that has the pretty green moth that lands on everyone and puts them to sleep? I joked with my son that he’d better prescribe that for me when he graduates, ’cause I LOVE that moth, and he said that once he was with a woman and her 8yo and the woman was complaining that she couldn’t sleep because of a stuffy nose, and the little girl said, Mommy, why don’t you try Lunesta?

Now THAT’s marketing!

hang in there patti, Andrea

My friend who had been unable to donate platelets last week was able to donate this week. : ) As we had planned, they ran a stat CBC to see where her counts were at so we’d know if she needed an RBC transfusion tomorrow or next week. Once again, shock and awe….Her HGB held at 8! Yippee. Her HCT was 23! Eeeks. I had just finished telling the nurse we were expecting it to be around 27 based on our previous experiences with where she was at last week. In order to save us another trip to Portland tomorrow they actually ordered her blood right away and we transfused her today. We cut back on the pre-meds just a little bit. Instead of 650mg of tylenol we only gave her 500mg. Just that little bit of difference mixed with the IV benadryl prior to the platelets didn’t seem to knock her out so bad. She was very grateful for that. It did all wear off before she was done getting blood and she got a few hives from the blood but nothing major and we didn’t treat them. They did go away on their own (thanks, Marla!).

So all in all, a pretty good day out. A little surprised at the that low of an HCT but still thrilled that Kou has managed to get her HGB to 8!!! I am still in awe of that feat because it was a major accomplishment.

We are going to take some time this week to go out and do something fun as a family and both Ron and I are looking very forward to it. The kids don’t know yet, but I’m sure they’ll be thrilled.

Not much else new so I’l go.

Patti

We saw Dr.Kou in the morning and he continues to do moxa treatments and he tweaked her formula just a little bit. He said now that her HGB is rising that we should see an increase of 1/10 each month until her HGB is normal again. Approx. one more year.

After Kou we saw the NP (Bonnie). We also found out that Dr.Karup has been moved to a different office so we will continue to see Bonnie indefinately and only see Karup when Bonnie (or Medicare) says to. I’m okay with that. I really have a much better working relationship with Bonnie and so does mom. Bonnie noted something going on with mom’s heart this week and asked mom if she was having any heart pain but didn’t further elaborate. I didn’t push it and mom didn’t catch the conversation or Bonnie’s actions so I just left it. At this point, what would it matter? If it’s something we need to know Bonnie will tell us outright.

We ran to Wal-Mart to grab one last gift for the kids and mom had to just stand in one spot while I ran to the game section (had to get Operation – do you remember that game?!). By the time we got to the infusion clinic she was just gone she was so exhausted. She literally slept the entire time (1 1/2hrs) and she slept through me changing her picc dressing! I’m not sure how she could sleep through someone pulling tape off of her arm, but she didn’t wake up until I was putting a new cap on. And she was still exhausted.

We came home and she slept on our couch for a 1/2hr until dinner was done and then she went home and went to bed at 7:30 and slept all night. I have NEVER seen her so tired. We have busy days all the time but she just couldn’t wake up today. She smelled horrible and I wonder if it had something to do with too many toxins in her body and just not being able to get them out making her feel so tired. Marla, thoughts?????

For awhile I had been sleeping better but now I’m back to not being able to go down until 2:00 or 3:00am. It’s killing me. I finally asked Reuter for some “knock out drops” today. That’s what she calls them. They are a combination of botanicals that she says two drops will drop me flat. Better take those lying down! However, it’s going to take her a couple of days to get them whipped up at the medicinary and she asked me to have Smucker call in a prescription for Ambien until then. She’s afraid with Christmas coming I won’t see the knock out drops until late next week. At first I agreed to placate her (and that’s what she called it) but after I got off the phone, I decided I can’t take that stuff! It’s so bad for you, and I’ve heard too many horror stories about people waking up in the night and driving places and never remembering. Nope – I just couldn’t do it. I am trying so so hard to just cast my cares on the Lord but am finding it so difficult to do that at night when my mind is racing of mom and school and everything else. So would you ladies just pray that God would be able to still my mind and I could sleep like a normal person? I know that my not sleeping is emotional. I will readily admit that. I just don’t know how to make it go away at this point in my life. I pray and pray when I go to bed and usually that would knock me out but this week it just isn’t happening. How am I supposed to feel? Mom is dying right before our eyes and the only one who will admit it is Ron. He and I feel like we are just silently going through this as his brother watches and doesn’t care. We know and fully feel God’s presence in all that has happened, but it doesn’t change the grief and sadness at the loss that we are feeling. Maybe God has us grieving early or something. I’ve wondered about that. Because when He does take mom home we will really need to be able to handle our kid’s grief and Marie’s as well. So maybe God needs us to go through all these emotions right now. I don’t even pretend to know or understand.

I think that’s it for now. Next Tuesday looks like a cake walk compared to our norm. She has zero – yes, I said zero- doctors appts. Just platelets. And Lord willing, it will stay that way.

Andrea, I LOVE His Eye Is On the Sparrow” and “Here I Am, Lord.” I can hear them in my head right now. : ) The song that God gave me two years ago that I sing every tuesday as I get ready is “Jesus Led Me All the Way.” I don’t know why, but God gave that to me and it’s been such a comfort on those days I’m preparing to go out. I have an almost bass voice. Not quite, but real close. My husband and I sound really good next to each other. : ) Wish I had time to sing in choir. Maybe when I retire!

I’m off to try and get some sleep tonight and make up for so many lost hours this week. As I have reminded my children this whole month, this is a time to once again thank God for sending his son to save us. “It twas his blood, his precious blood, that stained the old rugged cross…”

Patti