To follow-up on my post regarding the need for PB within my drug regime, here is some interesting info regarding Glutamine and it’s role within the body human…
Specifically – “laboratory studies suggest that glutamine may actually stimulate growth of tumors.”
ARRRGGGGHHHHHHHHH!
Seems Like So Much “stimulates the growth of tumors”!!
Tags: Glutamine, Sodium Phenylbutrate
As part of my “Case Management” at the Burzynski Clinic, I get a weekly “touch-base” phone call from Dr. Khan, a nice young fellow. We discuss what is going on with me – my drug reactions, how I’m feeling and the status of any upcoming tests.
Then he goes and coordinates with Dr. Deleon, and lets me know if any changes need to be made. So far no changes. Until yesterday.
Because of the trouble I’m having with my toenails separating from the nailbeds, Dr. Deleon has changed my Xeloda regime from 2 weeks on/1 week off to 1 week on/1 week off.
They also want me to increase my blood testing schedule, since some of my reactions may be due to electrolyte imbalances. But I’m waiting for billing from the North Cypress Medical Center Laboratory Services for the last blood work I had done, so I can pay… Guess I should call and see what the deal is cuz I don’t want to be denied treatment.
It’s difficult to keep everything straight, and at the end of each day I’m So Dang Tired, I just want to crawl into bed… Stress, depression and reactions to my treatment contribute to this chronic fatigue.
Notes, I need to keep better notes.
Tags: Xeloda
This is my week off of Xeloda – two weeks on, one week off, repeat repeat repeat til whenever.
While this medication is Much less to deal with than the high-toxcity chemo infusions I was previously on, I will still appreciate a “break” from the side effects… They Won’t Totally go away, a week is not enough time for that, but they Should subside a bit…
Especially the diarrhea, mouth sores, abdominal pains, excessive gas, Hand-and-Foot syndrome, dry itchy skin, rash, nail problems, tiredness, weakness, dizziness, headache, difficulty sleeping…
Wouldn’t mind some loss of appetite… just saying.
Tags: Xeloda
Today, at work, I got a call from Xeloda Patient Assistance Program Customer Support at Roche.
Wow… here I am, on this big company’s “hand out” list and THEY are checking on me… to see how I am doing… how I am handling the drug.
The lady was so very nice… we chatted about what I’m doing right, what I’m doing wrong, and what things I might consider changing.
Most importantly I’m taking the drug correctly (2tabs/2x daily as prescribed) and that I am aware of the common side effects and the uncommon ones to be concerned about.
She also mentioned not to eat spicy foods… uhhhhh… me? Not eat spicy foods?? Like THAT is gonna happen? Ok, waitaminute… lemme ask “why” before I make any foolish life threatening decisions. So, why? Heartburn. Ok, I can deal with a little heartburn. And seriously, the only heartburn I have had was when I added cayenne pepper tabs to my daily herb regime and then upped the dosage to 4/40,000 unit tabs/2x daily. Heartburn for a few minutes after about 5 min of swallowing – relieved with drinking water. She asked why I was taking so much cayenne, and I explained that I had read that there is evidence that capsaicin MAY affect cancer, especially to kill breast cancer cells, so I’m gonna heap that capsaicin into my body. Go figure.
Second suggestion… forgo the greasy foods. Well, I’m not much of a greasy food eater, never have been. My weakness is the carbs – rice, pasta, breads, mostly gone from my diet now. So… why? cramping. Yep, I had kinda figured that one out for myself when we went to get Mexican food. Probably the “greasiest” food I eat, and probably the worst pain I have had so far (on the gene therapy treatment), so now I am careful there. But gotta have my Mexican food, my queso and extra jalapenos and my occasional margarita (or two)! *LOL* She said that was ok, just not in excess.
Third suggestion… go easy on the “gassy” veggies, especially raw, like broccoli and cabbage. Ok, now she has named the 2 raw veggies I eat the most of – up to 2 cups of raw broccoli a day! Again, why? Cuz of the gas, silly girl. Ok, I can relate,. I am Major Mizz Gas. I.Am.Talking.Serious.Gas. But it’s been shown that green vegetables in the cruciferous family — which includes cabbage, broccoli, Brussels sprouts, and cauliflower (especially raw) MAY provide Important agents (Phytochemicals) in the fight against cancer, so I will endure some uncomfortable (and sometimes embarassing) gas to keep them Majorly in my diet.
Over all, I’m doing ok and her info was very helpful, and she said she was making notes and that my input would be helpful. Hey, at least I’m “giving back”!
I Hate having to ask for such high end assistance. I’ve never been one to support the welfare state, even now. I’ve pretty much always paid my own way – borrowing from my parents occasionally but not often. This is sure Not how things were supposed to be. For one, I Never thought Mr Sack would do me like he did and leave me high and dry to handle this alone. But, it is what it is, and he is Most Certainly what he is.
And it is…
XELODA
How should I use this medicine?
Take this medicine by mouth with a glass of water, within 30 minutes of the end of a meal. Follow the directions on the prescription label. Take your medicine at regular intervals. Do not take it more often than directed. Do not stop taking except on your doctor’s advice.
Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome):
•constipation
•diarrhea
•dry or itchy skin
•hair loss
•loss of appetite
•nausea
•weak or tired
Side effects that you should report to your doctor or health care professional as soon as possible:
•allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
•low blood counts – this medicine may decrease the number of white blood cells, red blood cells and platelets. You may be at increased risk for infections and bleeding.
•signs of infection – fever or chills, cough, sore throat, pain or difficulty passing urine
•signs of decreased platelets or bleeding – bruising, pinpoint red spots on the skin, black, tarry stools, blood in the urine
•signs of decreased red blood cells – unusually weak or tired, fainting spells, lightheadedness
•breathing problems
•changes in vision
•chest pain
•diarrhea of more than 4 bowel movements in one day or any diarrhea at night
•mouth sores
•nausea and vomiting
•pain, swelling, redness at site where injected
•pain, tingling, numbness in the hands or feet
•redness, swelling, or sores on hands or feet
•stomach pain
•vomiting
•yellow color of skin or eyes
What should I watch for while using this medicine?
Visit your doctor for checks on your progress. This drug may make you feel generally unwell. This is not uncommon, as chemotherapy can affect healthy cells as well as cancer cells. Report any side effects. Continue your course of treatment even though you feel ill unless your doctor tells you to stop.
In some cases, you may be given additional medicines to help with side effects. Follow all directions for their use.
Call your doctor or health care professional for advice if you get a fever, chills or sore throat, or other symptoms of a cold or flu. Do not treat yourself. This drug decreases your body’s ability to fight infections. Try to avoid being around people who are sick.
This medicine may increase your risk to bruise or bleed. Call your doctor or health care professional if you notice any unusual bleeding.
Be careful brushing and flossing your teeth or using a toothpick because you may get an infection or bleed more easily. If you have any dental work done, tell your dentist you are receiving this medicine.
Avoid taking products that contain aspirin, acetaminophen, ibuprofen, naproxen, or ketoprofen unless instructed by your doctor. These medicines may hide a fever.
Do not become pregnant while taking this medicine. Women should inform their doctor if they wish to become pregnant or think they might be pregnant. There is a potential for serious side effects to an unborn child. Talk to your health care professional or pharmacist for more information. Do not breast-feed an infant while taking this medicine.
Men are advised not to father a child while taking this medicine.
Where should I keep my medicine?
Keep out of the reach of children
Tags: Cliff Grimes, Clifford Grimes, Dallas, Mr. Sack, Xeloda
Going over my Burzynski Clinic expenses for May 2009…
Consultation @ $750.00
Nutritionist @ $350.00
PET / CT Scan (Houston Imaging) at $1,200.00
Xeloda @ $2,897/month
Zolinza @ $2,217/month
Tarceva @ $4,200/month
Sodium Phenylbutrate (aka PB) and “Case Managment” @ $4,500/month
Zometa @ $1,087/month
That puts my total medication expenses for May at $17,901.00
Wow…
Tags: Monthly Charges
April 15. Tax Day. Day of Reckoning…
Mom and I went for the appointment at Burzynski Clinic. What an experience.
First and Foremost – the feeling of Hope there is overwhelming. There is no smell of chemo, no sense of doom.
We met with Dr. Lordes Deleon, who would be my primary physician; Dr. Fu, an oncologist who came to The Clinic from MD Anderson; and Dr. Burzynski, himself.
It was a long time, took most of the day. And turned out to be very emotional. Eye-opening.
We had to go through financial planning, to be sure that I could afford the treatments. I don’t know how I will, but if I decide that this is the path for me to follow, I will have to find a way.
The final meeting with the Drs was the most relevant.
As we’re sitting there talking, Dr Burzynski keeps mentioning “the spread of the disease”.
what…?
“the spread of the disease within your body…”
what…?
So I am sitting there looking like a fool as the Drs inform me that there is a high possibility that the cancer has spread to my bones – specifically my spine – and to my chest cavity.
what…?
Dr Burzynski looks at me and says “surely you knew, surely your Dr told you of this?”
what…?
So, as Mom and I are sitting there, we all go over the results of the initial PET scan, the one that Dr Keller had read to us.
* At least 6 lymph nodes affected, with a stew of 7-10.
* Multiple left axillary adenopathy with difuse scattered activity within multiple nodes.
* Abnormal tracer accumulation in the mediastinum predominate pretracheal and subcarinal regions suggestive of subtle metatastic adenopathy disease in this region.
* Minimal scattered activity within what appears to be either the EG junciton or the thoracic psine as previously noted consideration to bone scan may be of further benefit to evaluate for an subtle osseous metastasis.
* Minimal scattered activity in the region of the EG junction which is difficult to evaluate if this is esophagus versus osseous abnormality and correlation with bone scan is suggested.
The Burzynski Clinic Drs are amazed that we don’t know this information, that Dr Keller didn’t go over all this with us.
Bottom line:
* The lymph node activity is much more than “2″ that Keller had told us.
* There is suggestion that the cancer may have spread to my bones and perhaps to my chest cavity.
* Several times in the report, the Radiologist suggest a bone scan – nothing was said by Keller.
Further tests are Definitely needed.
Keller simply neglected to mention this information to us…
Lovely.
Needless to say, I’m in a Total State of Shock…
Tags: alternative treatments
