Happy Thanksgiving to all of you! Every day needs to be a thanks giving day. We all know that. I want to keep you posted on my procedures that I have decided on. Calvin and I are leaving for Seattle early Sunday morning to go to Tiquina, Mexico for a treatment that I feel better about.
The procedure involves drawing blood from me. RNA-loaded Dendritic cell vaccines start with precursors which, when matured for the vaccine, are currently considered the most effective antigen-presenting cells within the immune system. They are then able to amplify tumor RNA from me, whether from the primary tumor site, distant metastatic sites, (my brain) or from tumor cells present in the circulation and transfect my DC's with my tumor RNA. This process offers the ability for most cancer types at any stage of disease to be target opportunities for this cancer vaccine. At this point they have created a weapon which, when injected into me as an infusion, will act as a cellular "smart-bomb_ in modern defense parlances.
Yes, it does sound complicated. I have been on the phone with the hospital in Mexico through this week, Calvin also. The doctors here are telling me of course they are not be takers of this...no surprise. They don't have an other options for me except more chemo and the "ipi". Neither of them are good for me so..... my prayers and heart are directing me this way. The Biocure hospital does not promise a cure but more of a healing process than than what I have left.
Once again I ask for your prayers. I know I have your love and concern. It means so much. Calvin will have his computer and we can email. I have to be down there for 3 weeks for these infusions which gets me home Dec. 18th. HO,HO,HO HAPPY HOLIDAYS!
Count Your Blessings and be grateful!
cgwhite@televar.com
Janae
Friday, November 26, 2010
Thursday, November 11, 2010
Seattle scan & "ipi"
Good morning to everyone:
Calvin and I had an adventure and long day yesterday but GREAT! We started at a new place for my MRI because they didn't have time for my appointment where I usually go at the University of Washington hospital.
Then we went over to U. of Wash. and waited 2 hours to see Dr. Rockhill. Sara, his assistent came in with a huge smile after we were in the room waiting over an hour and said "do you want the good news?" What a relief. She brought up all the tumors on the screen. She told me the one Rockhill did the gamma knife on last month was a bit smaller. Everything was stable which is good in their eyes. Of course I want some shrinkage!. "Patience my dear," my mom would be saying! Dr. Rockhill came in. Said it looked good and he thought the tumor seemed to be responding. We asked him some questions about the "ipi". He said he difinately thought it to be the next best step but this new Dr. Thompson that we were going to meet afterwards would be the pro to anser my questions.
We left his office at 3:00. Drove about 30 minutes to the Cancer Alliance Center. Waited there and got in to visit with him. He explained everything to us and answered our questions. I told him that I was worried about the side affects from the "ipi". It is a trial test that has been out for 8 years but not approved by the FDA. It's sppose to be out in March. On a scale of 0 - being great and 4 - being lousy in health, they only take the cancer melanoma patience that are in the 0 & 1 range which would make me a candidate. He says they have dropped the infusion dose from 10, 3, or 1. You usually don't get side affects until after the 3rd infusion. Or sometimes they don't come until later but do not last a life time. He told us that it is certain more promising then goin back through another round of Chemo. The cancer will keep coming back. The "ipi" is much more promising. He said "Janae the chemo makes you sick also." True. He gave us a 3 ring binder FULL of stuff to go over. I asked him if I was his wife what would he do. He said he understood the tough decision but he would have her do it because it can improve the risk of cancer throughout the organs and not just the brain. It last 4 months and you go over there for the infusion every 3 weeks.
I know you have other people to pray for but please keep me in your prayers. We are thinking we may go ahead and do it. We signed the consent form yesterday because Dr. Thompson also has to sign it in your presents. We can always back out but decided to save us another trip we would do it while we were there. He checked me over and said I was great but he needed a HIV blood test and some other scary ones ran. We went down to the lab and of course, if you don't know my history, I don't like giving my blood away. They got there best man there. I have learned to give a warning before they just call me back. He poked me 5 times and kept telling me how sorry he was. By now it was 6:15 and the lights were flickering off. He got 1 tube and said they would see if it was enough.
Got home after Calvin took me to a nice dinner and ctrawed in bed about 11:00...a long day for me and I didn't even drive!
We love you all so much and appriecate your thoughts and interest this fight for life!
Janae
Hymn
"Sweet hour of pray, sweet hour of prayer!
That calls me from a world of care,
And bids me at my Father's throne
Make all my wants and wishes known.
In seasons of distress and grief
My sould as often found relief
And oft escaped the tempter's snare
By thy return,
Sweet hour of prayer!
Sweet hour of prayer, sweet hour of prayer!
Thy wings shall my petition bear
To him whose truth and faithfulness
Engage the waiting soul to bless.
And since he bids me seek his face,
Believe his word and trust his grace,
I'll cast on him my every care
And wait for thee, sweet hour of prayer!
Calvin and I had an adventure and long day yesterday but GREAT! We started at a new place for my MRI because they didn't have time for my appointment where I usually go at the University of Washington hospital.
Then we went over to U. of Wash. and waited 2 hours to see Dr. Rockhill. Sara, his assistent came in with a huge smile after we were in the room waiting over an hour and said "do you want the good news?" What a relief. She brought up all the tumors on the screen. She told me the one Rockhill did the gamma knife on last month was a bit smaller. Everything was stable which is good in their eyes. Of course I want some shrinkage!. "Patience my dear," my mom would be saying! Dr. Rockhill came in. Said it looked good and he thought the tumor seemed to be responding. We asked him some questions about the "ipi". He said he difinately thought it to be the next best step but this new Dr. Thompson that we were going to meet afterwards would be the pro to anser my questions.
We left his office at 3:00. Drove about 30 minutes to the Cancer Alliance Center. Waited there and got in to visit with him. He explained everything to us and answered our questions. I told him that I was worried about the side affects from the "ipi". It is a trial test that has been out for 8 years but not approved by the FDA. It's sppose to be out in March. On a scale of 0 - being great and 4 - being lousy in health, they only take the cancer melanoma patience that are in the 0 & 1 range which would make me a candidate. He says they have dropped the infusion dose from 10, 3, or 1. You usually don't get side affects until after the 3rd infusion. Or sometimes they don't come until later but do not last a life time. He told us that it is certain more promising then goin back through another round of Chemo. The cancer will keep coming back. The "ipi" is much more promising. He said "Janae the chemo makes you sick also." True. He gave us a 3 ring binder FULL of stuff to go over. I asked him if I was his wife what would he do. He said he understood the tough decision but he would have her do it because it can improve the risk of cancer throughout the organs and not just the brain. It last 4 months and you go over there for the infusion every 3 weeks.
I know you have other people to pray for but please keep me in your prayers. We are thinking we may go ahead and do it. We signed the consent form yesterday because Dr. Thompson also has to sign it in your presents. We can always back out but decided to save us another trip we would do it while we were there. He checked me over and said I was great but he needed a HIV blood test and some other scary ones ran. We went down to the lab and of course, if you don't know my history, I don't like giving my blood away. They got there best man there. I have learned to give a warning before they just call me back. He poked me 5 times and kept telling me how sorry he was. By now it was 6:15 and the lights were flickering off. He got 1 tube and said they would see if it was enough.
Got home after Calvin took me to a nice dinner and ctrawed in bed about 11:00...a long day for me and I didn't even drive!
We love you all so much and appriecate your thoughts and interest this fight for life!
Janae
Hymn
"Sweet hour of pray, sweet hour of prayer!
That calls me from a world of care,
And bids me at my Father's throne
Make all my wants and wishes known.
In seasons of distress and grief
My sould as often found relief
And oft escaped the tempter's snare
By thy return,
Sweet hour of prayer!
Sweet hour of prayer, sweet hour of prayer!
Thy wings shall my petition bear
To him whose truth and faithfulness
Engage the waiting soul to bless.
And since he bids me seek his face,
Believe his word and trust his grace,
I'll cast on him my every care
And wait for thee, sweet hour of prayer!
Tuesday, November 9, 2010
Good afternoon to some of my favorite people....family and friends. It's hard to believe Fall is here almost Winter and another 4 weeks has gone by. Bergen just had her triplets and Jud took me to boise for a two day "rock and hold" trip. They are well and Bergen went home lastnight. The babies will be there until around Thanksgiving. Even though means many times to the hospital which is 20 minutes away, it will give her some rest time. We left Judson there to help with Jada. She is 18 months. The house will be busy but so happy and blessed they feel for answered prayer.
I am on my way tomorrow early to have lab work done, another MRI on my brain and meet with a new doctor, Dr. Thompson. They are proposing a clinical study for me. I haven't made up my mind yet because I need more information from Dr. Thompson who I will meet tomorrow. The percentages of a cure or a better life do not impress me. The side effects are severe as they say. Diaherra, arthritis, which I already have, pitary gland problems, skin rashes, swellin in the eyeballs. Not a great quality for life. I am doing better then most that go on this.
It's called "Ipilimumah" Ipi for short. There is quite a bit of information on line about it. They will go over my results from my last gamma knife that I had Oct. 7 and then we will see what needs to happen. I guess it's good to always have something to pray about and draws us closer to our Heavenly Father.
Think of me tomorrow and remember in your prayers. They mean so much to our family.
MATTHEW 5:13-16
"Ye are the salt of the earth but if the salt have lost it's savor, wherewith shall it be salted?
it is thenceforth good for nothing, but to be cast out, and to be trodden under foot of man.
Ye are the light of the world. A city set on a hill cannot be hid. Neither do men light a candle and put in under a bushel, but on a candlestick; and it giveth light unto all that are in the house.
Let your light so shine before men, that they may see your good works and glorify your Father which is in heaven."
I'll write Friday morning. We usually get home to late. It's a long day!
love to you all
Janae
I am on my way tomorrow early to have lab work done, another MRI on my brain and meet with a new doctor, Dr. Thompson. They are proposing a clinical study for me. I haven't made up my mind yet because I need more information from Dr. Thompson who I will meet tomorrow. The percentages of a cure or a better life do not impress me. The side effects are severe as they say. Diaherra, arthritis, which I already have, pitary gland problems, skin rashes, swellin in the eyeballs. Not a great quality for life. I am doing better then most that go on this.
It's called "Ipilimumah" Ipi for short. There is quite a bit of information on line about it. They will go over my results from my last gamma knife that I had Oct. 7 and then we will see what needs to happen. I guess it's good to always have something to pray about and draws us closer to our Heavenly Father.
Think of me tomorrow and remember in your prayers. They mean so much to our family.
MATTHEW 5:13-16
"Ye are the salt of the earth but if the salt have lost it's savor, wherewith shall it be salted?
it is thenceforth good for nothing, but to be cast out, and to be trodden under foot of man.
Ye are the light of the world. A city set on a hill cannot be hid. Neither do men light a candle and put in under a bushel, but on a candlestick; and it giveth light unto all that are in the house.
Let your light so shine before men, that they may see your good works and glorify your Father which is in heaven."
I'll write Friday morning. We usually get home to late. It's a long day!
love to you all
Janae
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