DAY +3 - PART DOS
Hi Pauline here...Day T+3 and counting.
Things aren't so great at the ranch here. Since Buffalo Boonie blogged the day has gone pretty sour on him. Seems the UTI may be a just a reaction to the chemo but either way it's the same pain. There was a second culture started this morning to see if its any different from the one started 2 days ago. Hopefully nothing will grow and it will be only a chemo reaction, not an infection.
Crying pain.
Right now this very minute yet another Nurse Goodbody has come to the rescue. Lots of pain meds and some stuff to line his esophagus to calm down his sensation of having something stuck in there. Still he is at every opportunity reminding the nurses that the morphine is due at 9PM. They all know, believe me they all know.
Boone's blood count numbers are continuing to drop, but are still within a decent range. No blood transfusions needed yet. Call me crazy, but I think its the Dandelion Root Extract he took for the last several months. Dr. S at one time said "whatever it is you are taking, keep it up" so I had Boonie on 2 capsules a day. His bloodwork was normal a few times and only a tad out of range at other times. When he checked in his numbers were pretty much normal. Its just that damn DNA of his that is bothersome. I haven't figured out how to change that yet...give me some time...
If you are reading this blog because you or a loved one has CMML, Google "CMML Dandelion Root". There's a study from Windsor University (Canada) that say DRE will kill three cell lines of CMML. My girlfriend from high school has a son that is a microbiologist from a well respected university in Pennsylvania. He looked at the study for me and said it looked legit. Also Google for DRE in relation to pancreatic cancer, melanoma, colon cancer, and I think there was a study about DRE and breast cancer also. DRE is some amazing stuff. It is supposed to kill all sorts of pre-cancer cells.
9 comments:
Hang in there and hold on tight. Hugs.
Yo man. I am holding off on a bar trip for ya. That may be my excuse to finally throw one back again. With you my traveling companion and sidekick extraordinaire. I need to come by for some "I don't give a shit" booster lessons too if ya know what I mean. Your office smells like latex btw. Everytime I go in there it's like a ...... Well I digress.
Hang in there guys. I know this is no picnic for either of you, but you have lots of folks sending all we can send (well wishes, prayers, and the like). Hopefully they will provide adequate or better amounts of mood enhancers/pain killers, until such time they are no longer needed. Wish I was there to visit and hang out...shoot the shit for a while, as it were. Keep pushing through and I hope you get some relief soon.
Later boss.
I recently saw the info on the dandelion root testing at the University of Windsor. It looks like a truly amazing study and Dr. Pandey seems like an amazing man and doctor. They are set to go to clinical trials soon.
Lots of thoughts and prayers going your way. --and MILES. We broke 3000 this weekend. Check 4MMiles@gmail.com when you have some slow time. I hope the notes and miles encourage you. I hope you start feeling better soon. The Cancer Center told me there would be down times, but they know what to do. Take care. He talks more? that must me my DNA taking over...
Love,
Donor
Hi Pauline,
I'm interested in your saying not to take the dandelion root while you're on chemo, but you said Boone had taken it for the last several months, so did you mean that it shouldn't be used while one is actively receiving chemo? How did you guys use it? I'm very interested in figuring this out (my brother has cmml, is going through chemo right now). Thanks!
Jeri,
I read that paper from Windsor and bought it at the GMC the next day. I started him on 1/day to be sure wasn't going to react. Then I put him on 2/day when nothing happened. I think maybe 3/day might be better, but I didn't try that. Anyway, all the doctors poo pood it.
After his pain and stomach issues resolved from taking (was it? ) Azidine? Anyway it was a clinical trial to test the drug in pill form. Made him real sick.
He quit the trial and we were in a watch and wait period with the doctors. Thats when he started taking the DRE. He felt great, did great until a doctor in Seattle poo pood it and even scared him about how it could be poison.. (my word)...so he quit taking it.
Not too long after that his intestine ruptured and diverticulitis showed up that he had never had an issue with before. Thats where he got his ostomy.
As soon as he got out of the hospital he agreed to take 2/day. We did tell his oncologist that acted like OK if you wanna waste your money go ahead.
Within 1 1/2 month, the doctor came in and said "Whatever it is your taking keep it up." That is an actual quote. Boone's blood work was so unexpected the doc couldn't believe it was Boone's. So he kept taking it.
In December Boone's Whole Blood Counts were normal. Just to look at those, you'd think he was perfectly healthy.
However, Boone's cytogenics report had 20 mutations that were all acute cancer related. I think - just me here - that the docs saw that report and figured he was going to turn acute soon.
The optimum time is when the Whole BC is at its best and just before you turn acute. (That was the protocol when Boone was diagnosed; I think now that some are thinking asap at diagnosis is better,)
If we do not respond, comment on current post to send us to look for the question. Im so sorry we left you hanging.
Jeri,
Our oncologist said once Boone is on chemo it had to stop, because they just don't know if they would be happy together.
If there is times between chemo for your brother, ask your oncologist . Show him/ her the study.
Thanks, Pauline. No problem about any delay in answering-- you've had quite a bit going on. :) We did take the Windsor study to my bro's oncologist, and the oncologist did caution against using DRE during chemo. Such an important and interesting study, I hope they get great results from it and from the clinical trials. So happy to hear about Boone's neutrophils showing up! Still praying for him.
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