[Jimbob]

Campbell,
I too am sorry that your husband is experiencing such pain and difficulty. I praise the Lord that you two have been together for so long and know that you feel the pain along with him. You are more like one person and losing him will be very difficult. But approaching it with prayer and trust in God. Keep the faith that he will be whole, healthy and happy and it will help you through it now and in the future.
We will prayer for you and your family.
Jim

[Jimbob]

Patti,
I am sorry I could not make it to your MIL’s service. You have been a great source of information and support for many while you were also being a wonderful daughter-in-law and caregiver. I hope and pray that your new role will be give you many joyful experiences.
Jim

[Jimbob]

Gail,
I offer condolences and prayers for you and your family. Be thankful for the good memeories that you have and that you can be at peace that you know she is with the Lord.
Jim

[Jimbob]

June,
I have not researched RCMD, but I will tell you that the anxiety and roller-coaster feelings are not unusual or wrong but don’t let them consume you. Things change constantly and the future looks a bit better almost daily. Continue to do your internet surfing but don’t get hung-up on the negatives or those that all go back to the same source. Seek out current experts that have had successful experience with treating RCMD and whatever other conditions your father my have. Knowledge helps to make a good decision but without family support, encouragement, good attitude and hope even that won’t work. Be there for your dad but also take care of yourself.
Jim

[Jimbob]

I definitely hold to my opinion that one should seek alterrnative methods in addition to “standard medical practice”. Even standard medical practices are often put aside for numerous trials and off-label uses of various drugs. The medical doctors do the best they can with the knowledge and experience that they have but they are limited by ussually not even being “allowed” by their fellow MD’s, drug companies and medical schools supported by them to consider other possibilities. Yet, there are more and more doctors and pharmacoligists that are becoming more open minded.
As far as a few off-the-wall dx’s by some alternative healthcare providers, there are quacks or, to be nice, unusually misguided people in almost any occupation.
If you don’t know what possible options may be available, how can you make anything close to an informed decision? But, if you do decide to use alternative or complementary methods, you MUST make sure that all of your healthcare providers know what you are doing or using to prevent adverse interactions.
Cheeesh, do I need to follow Patti’s example with something like, “What I post is only my opinion from my limited experience and research and is not meant to diagnose or treat any medical conditon or illness. Consult your own medical doctor AND research other healthcare providers for how examples my relate to your condition and situation.” ?!?!?!?!
Thanks to all who have provided information and support to me over the last four years. Wtihout the options, I know that I would not be here now.
Jim

[Jimbob]

Choijk and anyone else considering natural methods:
I firmly believe that seeking out more natural methods to improve overall general health can only give your body a better chance for long term survival and increased quality of life.
Our bodies were not meant to take in all of the toxins and garbage that currently make up most of food intake. Most of the processing and additives that are used to make food easier and quicker to prepare and supposedly “tastier” do more harm than good to our bodies. The general quality of our food is poor because most soil is poor – without adding possibly harming chemicals to increase harvests. Even most drinking water has things in it that are harmful. Remember the old adage, “Garbage in, garbage out.” Also, even the best gasoline engine will not run properly on contaminated gas or hardly at all on even the best diesel.
Do not simply go off half-cocked trying different things, though. Something that is great for one peron may put another totally out of balance. Find a naturpathic physician, nutritonist or (Yes) Chinese medical doctor that is experienced in treating you type of illness to guide you on the proper nutrition for you individually. Most will insisit upon some kind of detoxing to get as much of the toxins out as possible. Then you will probably be told what things to abstain from totally, and some things to at least limit for awhile. Then you will be given information on what you should eat, or more likely juice, to improve your condition.
I have detoxed, juiced various organic foods and added specific supplements that were recommended as proper nutrition for me and to help my body to heal itself. I also use a portable water distiller and a quality water filter for ALL of the water I drink or cook with.
Regardless of what some others may say, getting back to treating your body the way it should be can improve your quality of life, overall health, and chances for survival – whether or not you continue to also follow modern medical standards or trials. Make sure that all of your caregivers are kept aware of whatever you are doing to prevent adverse interactions.
Now I guess I’ll just sit back and only read posts again for awhile and watch as my rating goes down for not being in line with the closed-minded.

[Jimbob]

the VA does not usually pay for the expenses incurred at a non-VA facility. Locally, if I had been rated for CMML by the VA, they would have required that my care was through the VA facility instead of the Center of Excellence at OHSU. Two of the OHSU doctors do work at the VA Med Center but not the ones that were caring for me. Also, the rooms and facilities at OHSU are MUCH, MUCH better. Because of this. I decided NOT to even apply for disability related to CMML until after the SCT. I did apply immediately after but was initially denied. I am still going through the appeal process.
If a patient was already accepted as 100% disable with CLL being a serious conected disease, then one sould contact the VA to see what benefits might be available and what hoops one has to jump through. !00% disability might still offer some benefits to the surviving spouse, depending how long the disability ws in effect or if it started immedicately after discahrge.
I do not think that Agent Orange contained benzene but you might want to google it to find out. The worst of the problem causing ingredients was dioxin (TCDD).
Jim

[Jimbob]

I am going thru the process of getting rated for disability with the VA. I do have a low percentage of disability but I am appealing and trying to get it increased. It is almost impossible unless one can show a link that is accepted “as likely as not” of being the cause. Further, one has to have applied for benefits prior to the expenses and it cannot be done after a veteran has deceased.

[Jimbob]

Neil,
Strange things happened to my counts, too, when I went through resporitory infections between this last Thanksgiving to Christmas. The antibiotics also messed up my digestive system. Once things got better, I added high level of pribiotics to fix that. Hope you continue to improve. Not to put stress on you, but many need you posts.
Jim

[Jimbob]

Janice,
I mostly agree with Patti, BUT if there is a way to prepare for a SCT by seeing if a compatable donor is available, etc, than I would suggest doing so while learing more about complimentary or alternative forms of treatment. This way you can possibly increase the quality of life as well as possibly prolonging life but also be ready in case ther is a set-back.
Whatever your dad decides to do, though, he will need your family’s support.
Jim

[Jimbob]

Thank you, all.
My daughter did have a lot of problems and got overstressed herself, we think from over exposure to paints and the like. She was pursuing an Art degree and had to take a break for a while due to extreme debilitating chronic headache. No relief, 24/7, for almost two years. Finally got a break (through Botox injections!) and completed college and earned teaching credentials. She is now teaching part-time. House and motorhome are in good shape and have been well used for rest and relaxation. Wife and family do their best to keep me from overdoing anything. And I am doing physical therapy to recover from muscle atrophy, chronic pain and chronic fatigue. Also group therapy through the Veterans Administration to treat PTSD from service related events. There are occassional setbacks but I really am getting better almost every day.
I get a lot of inspiration from the folks on this forum, even if I am not alwyas able to respond.
Jim

[Jimbob]

pigduck,
I am pretty sure that stress, of many kinds, is what caused the leukemic event. I was diagnosed in Feb 2003 after my annual physical. I had been very tired and had increasing levels of aches and pain all over. My white blood cell count was over 20 and then a BMB showed that I had CMML. At first they told me that CMML was terminal without any treatment. I went to Oregon Health Science Universit Hospital and they were willing to do a transplant which they said was a cure but that the chances for surviving it were less than 30%. I wanted to see if there were any other options. While researching for other possible treatments, I found a naturapathic physician who was also a Chinese Medical Doctor acupunturist, and nutrionist. I worked with her and was steadily improving. Not only had ALL of my blood counts gotten back into the normal ranges but I had increased endurance and had very little pain anywhere.
By November, because things were looking so good, I had decided to continue with our family’s tradition of hosting Thansgiving and Christmas dinners, where I do almost all of the cooking. Both occassions would have 30 guests. In addition to that, I decided to also throw a 30th wedding anniversary party with about 80 of our closest friends to surprise my wife. I did almost all of the planning and preparations for everthing.
To complicate matters, our home heating system quite without any warning two days before Thanksgiving. We were able to heat the home temporaritly with electric space heaters. I got bids for replacing the furnace with a new heating system, adding air conditioning, electronic and UV air cleaners, and extending duct work into the second floor. I got bids from 12 contractors. That was a lt of work and a lot of hasseling! The job was just completed the morning of December 18, the day of the anniversary party! Then all of my promised help ran into problems and I thought I would have to do all set-up on my own. I had not done any set-up before my wife had left for work that morning to ensure the surprise. Luckily, a few guests, including my doctor, called early and asked if they could help with anything. They came over and in just a couple of hours decorated and rearranged the house for the party while I prepared and cooked food. My wife had NO idea anything was up until I got her home – late. I picked her up from work an hour after normal and got chewed out all of the way home. Boy was she surprised AND apologetic. It was a real success.
Christmas dinner was a little easier because my wife was in on it and did almost all of the decorating and most of the set-up. My job was primarily food prep and cooking. Again, all went well.
About this time, though, my daughter, who was home from college for the holidays, found out that her new housing arrangements that were supposed to be available on January 1, had fallen through. Being in a VERY giving mood, we helped her shop here for new furniture, that she would be able to keep for years, and, because the prices for so good for quality furniture, I decided to load it into a U-Haul trailer and tow it behind our motorhome and set it up for her before school started.
This meant taking the motorhome out of storage getting new tires on it, which I had planned to do in the spring. When we were getting the tires replaced they found the front brake rotors to be cracked and they also needed to be replaced. This could not be done until after January 1st. We had to cancel the furniture purchase, the trailer rental and make last minute flight arrangements for my daughter to get back to college. She left New Years Eve and on New Years Day I got extremely sick and was admitted on January 2, with a WBC count of 385K!
Because the blood was basically sludge, I had a heart attack. I spent most of the nest 2 months in the hospital. And that is another long story.
After revewing my blood counts and activities prior to the event, all my doctors and I agreed that I had overstressed myself physically, mentally and emotionally, and that that was as likely as not what caused the leukemic event.

[Jimbob]

I am almost at 34 months post transplant after CMML suddenly erupted into extreme AML. I am supposedly totally cured but I am stil trying to beat some of the after effects. Quaity of life is okay, definitely better than the alternative, but I still have chronic fatigue, chronic pain with periphial neuropothy, and more than a bit of “chemo brain. I actually had some of these problems before but the SCT did make it much worse. But I am alive and getting better day by day. Postive attitude and get yourself ready in every way that you can. I do reccommend nutritional and natural methods to help get your body ready. Also get you dental health up to snuff because you won’t be able to have dental work done for many months after. Andthat may help keep down GVHD in the month, throat and stomach.
Jim

[Jimbob]

Butch,
We will keep Ashley and your family in our prayers. I wish there was more that we could do.
Jim

[Jimbob]

I use “Green Source Iron Free” from Vitamin World. I hope there is a store in your area. If you register with them (free) you will often get opportunities to get it at discount, sometimes two for one.
Jim

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