We will know more by the middle of the first week in Jan, but here is an update as of Dec 30. This is partly written by Dave & partly by Janet.
We are loving the ‘heat’ and sunny days here in Houston, TX. The American Cancer Society, arraigned for a one time, almost free, round trip ticket, Seattle to Houston, for both of us! When we arrived on Christmas Day it was cold, gray and drizzly. It looked just like the weather that we thought that we’d left back in Seattle. But, the next day the sun came out and it is has gotten to the mid 70s for several sunny days. Yippee! T shirt weather is our favorite!
Dec 27th we saw the ‘notorious’ Dr. Burzynski. We really like him. And his staff, too. They are using very clever technology and their large selection of ‘tools to fight cancer’ to improve their odds of success with Janet. The drugs that they use are all FDA approved, but often for other uses. They call this ‘off label’ use.
On Dec 27th we spent from 10:00 am to 5:30 pm at the clinic seeing doctors, nurses, a nutritionist, a financial adviser and now are much poorer financially but very optimistic regarding Janet’s treatment.
On the 28th they did a PET scan before beginning any treatment. The PET scan showed that many of the worrisome ‘spots’ on the CT scan, were NOT active tumors. They are either dead and not yet assimilated, or they may be scar tissue.
But, there are still some, small, suspicious areas and they are going to treat those.
In mid December 2011, we had a sample of Janet’s original tumor from December 2010, sent to Caris Life Sciences in Arizona for a detailed test of many factors, especially genetic testing. The idea is to learn, as exactly as possible, what kind of cancer Janet has.
Doctors have known for some time that ovarian cancer, liver cancer, breast cancer, etc, are different and even though what began as ovarian cancer may now be in a different part of the body, success in treatment is much greater if you know where it started. There are many, many kinds of cancer and they do not all respond to the same treatment. This is part of the reason for the erratic results that most patients have. Even if you only talk about ovarian cancer, there are many kinds of that. Well, now it is becoming accepted that we can test for a much more precise genetic fingerprint of Janet’s exact cancer.
So, Dr. Burzynski had Caris find many of the genetic errors that allow Janet’s cancer to grow. For example, the BRCA1 and BRCA2 test that you hear about. They do not know how to test for ‘everything’ but they can look at the many ‘usual suspects.’
These are called the ‘targets’. Then they use the drugs that are know to ‘target’ those specific genetic defects. These drugs that target specific problems have much less collateral damage than the ‘hand grenade’ or ‘atomic bomb’ approach that are the many kinds of chemotherapy or radiation. At the Burzynski Clinic, they are also used in combination, custom designed for Janet. That way they can usually use even less of each drug and there are even fewer side effects.
The results from the analysis of Janet’s tumor that was removed last year shows which chemo drugs will not work well for her and which will. So, Janet has started taking several of those suggested drugs.
It is interesting that they start her on one new drug at a time. That way, if she has any side effect, they are more likely to know which drug is causing it. She is not having any troubles yet and does not expect to.
Also, these tumor samples are of the cancer as it was a year ago, and things may change over time, so the doctor has also taken a lot of blood samples and urine. These are tested for genetic and other markers of how Janet is doing NOW and by the first week of January all the results will be back and there will be an even more accurate plan for her treatment.
The results of Janet’s latest CA 125 haven’t come back yet. We are anxious to see what it is.
We always wondered what a nutritionist would say about our diet and we had a nice long talk with a really nice one here at the clinic. She specializes in cancer fighting diets that are compatible with the patient’s specific needs and treatment. She thought our diet was very good but had a few suggestions which we will incorporate into our diet. For example, Janet can’t take our multivitamin (due to the Folic Acid, selenium, & B12 in it) while she is on chemo and she is on the wagon again. But hey, we want this cancer gone so giving up wine for a while is not a problem at all.
We hope to know more by the 4th or 5th, so check back.
Happy New Year, Feliz Año Nuevo, Mutlu Yıllar, bon any nou, gelukkig nieuwjaar, godt nyttår, gott nytt år, szczęśliwego nowego roku, bonne année, ein gutes neues Jahr, and many more
Dave & Curly
FYI: To our friends who think that Janet ‘over did the perm’ that is her real hair. She has always wished for black, curly hair. Just like her Tony Doll.
Be careful what you wish for. <wink>