jeffg

Tell them your going to send an alert e-mail to NBC and ABC and all the networks and ask them to do a poll rating of medical insurance companies and explain to them Your Husband is fighting for his life and they are refusing to approve blood test to see if the treatment he is undergoing is evening working which probally cost 20 times more I’m sure than the blood test. We have atena for dental only and that is going to change. We should boycott all Medical Insurance Companies that create stress and frustration over life threating situations like this. You’ll come out on top as persistence does pay in dealing with matters like this. All the Power to ya !!!!!!
There I’m calmed down a little. Best of luck to you. Remember like most large business you have to by-pass the script person before you get results.

Jeff G.

Maggie, My sincere condolences and prayers.
Jeff G.

Hi Peter, Day 2 treatment was given today for the OXY and Xeloda; consisited of a bag of saline and the mixture of anti-naseau/ steriod IV. Plus they had some valentine chocolates for breakfast. I discussed with Oncology Nurse this morning about not sleeping well and she herself has some type of cancer and said what she does is eat a couple little bags of M&Ms or a candy bar wait for about 10-15 minutes and she is out like a light. I also today got a copy of the doctors orders so I know exactly what my treatment is and what are also the back up order if platelets and nuetrophils drop to low. Like I found out today if my nuetrophils drop below 1000, I am suppose to start antibiotic and figrastin injection to to boost my WBCs and immune sytem. Peter I didn’t try dentic cell therapy but did do 3D conformal radiation to the liver tumor which shrunk it by 2×3 cm on last scan. It was done as a pallative treatment but knowing that it showed positive results that may be a return option for more than just pallative treatment ; in other words turn it up and go for the gusto but don’t over do it. Thermo high heat if precisely done does kill cancerous tumors according to all my research. I’m told it is expensive and it is time consuming. What the hecht It is better to owe them than cheat them out of it. Cost of treatment is sooooooo over inflated it’s pitafull. Well I rambled enough. Nice Chatting with you peter I’ll keep you posted if any thing new developes with this treatment. I would be quite interested in how your mushroom extract does for you.

Keep Your Chin UP!
Jeff G.

Hi Kate ,

When I had my liver resection amd gall bladder removed It was months before I had some type of normalizaion. Even today it really depends on what I eat or to much of causes wind/indigestion. with her gall bladder gone that alone could possibally change the rate of digestive enzymes flow. This is just my thinking out loud. Probally good Idea to search the net for ???????. Hope your Mom is doing as well as can be expected. I start round two Oxy and Xeloda tomorrow. Just a smaller dosage this time hopefully not have the reaction as last time.

Jeff G.

Hi Ron,
Practically the same situation I went through and still at it. Only when my CC returned it mets to both lungs and my right lobe of liver. Originally they removed the left lobe and gall bladder. In hind sight I asked myself as well, why they didn’t follow up with chemo? I may have had a different out come. However, I’m going to press on with trying chemo and radiation until the magic bullet arrives. I’ve had days that I just wanted to say ………………….! But I have to much love in my heart to leave my family and two little grandchildren. I want to be here as long as I can to help them in any way possible. I’m prepared if the time is not given to me , but I’m going to give a good ole fight and squeeze a day at a time and be happy doing it. I’ve learned beyond doubt, life will go on whether I’m here or not. I understand the reality of departing this world sooner or later. My family and I have talked extensively about the reality of all these what ifs and are prepared as much as one can be when and if I really get in a bad way. Emotionally, we have joined forces and feel free to talk about all I’m going through as well as what they are thinking and feeling. I’ve always been there and provided the shoulder now we just take turns. It’s truely a loving experience. I don’t feel like I have to hide my emotions by being stern and snappy at anyone as it is no ones fault. I kinda say to myself that I could have not been born period and would not have experienced any of the many beautiful moments I’ve had in life and continue to have. Ron, I guess I’m saying it is rough, frustrating, and depressing, but if you take a minute and reflect; as unperfect this world is, There has and will continue to be enjoyment, smiles, and laughter in all our life’s. I really wish you the best mate! Keep your chin up and give it your best. Asking for a little help from God helps me.
Jeff G.

Hi Kate,
I admire your Mom’s strength, wisdom, and faith. I have personally been involved with the dying and death of 3 very close friends that had cancer. Although different familys and individuals and circumstances; most common was dealing with the emotional part. I would recommend going to a web site( http://www.dyingwell.com ). Dr. Ira Byock, MD provides lots of information and different senerios as well as recommendation of who to get involved. I have found it to be very informative and helpful. As you read through some of his information you’ll see clearly what to expect and what your role as a caregiver and loving daughter can be. Love, talking, and touch will be a few good pointers as well as when to let Mom know it’s it’s okay. Just asking the question Quoted by Dr. Byock puts you half way there of how to deal with this end of life reality that we all must face eventually.
God Bless you and your Mom.
Jeff G.

Hi Kate, CA19-9 is a blood test used to sorta monitor the activity of cancer usually when it’s high it means active/larger tumor going on. If it’s low then less tumor activity is going on. No change to the count can mean posssible stable condition. I also remember researching that CA19-9 should not be used as a diagnostic tool,that other( benign) diseases can also elevate the levels. Basically, if a CA19-9 is given upon initial DX they use that as a base line and test after that gives the doc a general idea of how agggressive or no -aggressive the cancer is. The doc’s call this a tumor marker. In my case mine was slightly elevated and if I remember right the next step was ultrasound of my organs, then CT, then,MRI and then surgery. So, I don’t know if I explained this well enough. Bottom line is CA19-9 In my opinion needs to be confirmed by way of CT. That is why quarterly CT monitoring is the way I go. It is a useful tool for monitoring and generally verify activity is still going on or not once diagnosed. It’s like other blood test it gives you a pretty good indication of where or what to look for next. Although, there is some test that can be used for specific diagnostics.
Glad to hear you and Your Mom are headed back to the UK. Wish you both continued strength.
Jeff G.

Hi Caroline, I started the Oxaliplatin and Xeloda regimen on Monday. Xeloda don’t seem to be to bad but the Oxaliplatin was instant pins and needles to hands, feet, and mouth(lips). Day 5 and I still can’t touch nothing cold and I have to microwave my water warm enough to drink. It’s funny I go to stick my hands in the fridge and the cold air starts the needles and pins. I use some wooly mittens now Ha! The Oncologist told me only a couple days but when I read the literature it said 5 days before it eases up. I can definitely tell it agressively attacked some cc cells. With a little bit of loritabs I tolerated it okay. Your right about the Xeloda does cause some joints to ache. You mentioned something about steroid meds? I know they gave me something extra this time, I’ll have to ask next week when I go get blood checked on Monday. I did want to mention for anyone trying oxaliplatin to request extra fluid after and to do 3 hour infusion versus 2 hours as it starts off with a bang.

Jeff G.