Hi everyone!
I went to see my doctors last week. They took another PCR ABL test in which I get the results in the next two weeks. Jenifer and I are now engaged! We are preparing for our trip to Hawaii in June! I will update my post when I get the results back!
Friday, April 30, 2010
Monday, March 22, 2010
Nothing New.....
Hi everyone!
Man this blog is getting big! I cannot believe how many followers I have now! Thank you all for your continued prayers and support.
Right now it is a waiting game…. I will try and post at least once a month unless I get some news. Right now I have appointments with my doctors every four weeks. Each time is about the same. They take my blood and check all of my internal organs to make sure the chemo is not damaging them.
My quality of life is not the best right now but I continue to tell myself it could be worse! The side effects from Gleevec are sometimes unbearable but it’s much better than having radiation every week!
Other than the side effects I am doing well. Jenifer and I are going to Hawaii for 10 days in June. This will be a nice break for us!
I will continue to update the blog. Thanks again for all of the wonderful support!
Love you all,
Ryan
“Chemo-Sabi”
P.S I just got a new shipment of bracelets in. If you want any please click the link to the right of the homepage. 100% of proceeds go to my foundation Shoot for the Cure- Partnering with The Leukemia and Lymphoma Society.
Man this blog is getting big! I cannot believe how many followers I have now! Thank you all for your continued prayers and support.
Right now it is a waiting game…. I will try and post at least once a month unless I get some news. Right now I have appointments with my doctors every four weeks. Each time is about the same. They take my blood and check all of my internal organs to make sure the chemo is not damaging them.
My quality of life is not the best right now but I continue to tell myself it could be worse! The side effects from Gleevec are sometimes unbearable but it’s much better than having radiation every week!
Other than the side effects I am doing well. Jenifer and I are going to Hawaii for 10 days in June. This will be a nice break for us!
I will continue to update the blog. Thanks again for all of the wonderful support!
Love you all,
Ryan
“Chemo-Sabi”
P.S I just got a new shipment of bracelets in. If you want any please click the link to the right of the homepage. 100% of proceeds go to my foundation Shoot for the Cure- Partnering with The Leukemia and Lymphoma Society.
Tuesday, February 9, 2010
Good news!
Hi everyone!
Great news today! I received the results of my latest PCR ABL test. My first one showed 126% on 12.12.09. I was retested on 02.05.10 and my result is 31.71%! I've been told this big of a jump is normal. The long stretch is coming now. The log reductions from 30% to 0% should take about a year. Once I hit 0% I will be in molecular remission.
When I hit 0% the cancer is out of my body. Unfortunately I will have to be on chemo the rest of my life or until they find another cure because my marrow will continue to produce cancerous cells. I'm ok with that!
This means all of the crappy side effects are actually worth it!
Love you all!
Ryan
Great news today! I received the results of my latest PCR ABL test. My first one showed 126% on 12.12.09. I was retested on 02.05.10 and my result is 31.71%! I've been told this big of a jump is normal. The long stretch is coming now. The log reductions from 30% to 0% should take about a year. Once I hit 0% I will be in molecular remission.
When I hit 0% the cancer is out of my body. Unfortunately I will have to be on chemo the rest of my life or until they find another cure because my marrow will continue to produce cancerous cells. I'm ok with that!
This means all of the crappy side effects are actually worth it!
Love you all!
Ryan
Wednesday, January 20, 2010
Blood Type
Hi everyone,
I just received a call from my doctor. My blood type is B Positive. No I don’t need any blood right now. Just thought I would post so everyone that wanted to know, now knows!
I just received a call from my doctor. My blood type is B Positive. No I don’t need any blood right now. Just thought I would post so everyone that wanted to know, now knows!
Friday, January 15, 2010
01.14.10 Doctor Visit
Hi everyone!
I went to my Oncologist yesterday and they have increased my dose of Gleevec from 300 to 400mg per day. The side effects are the same just more of them. Lots of pain, chemo brain, having nausea, headaches etc… Same old same old!
I am thankful to still be around and to have the ability to get outpatient treatment. I’m also thankful for Jenifer. Without her my life would be pretty empty! She is always there to take care of me or listen to be complain about how I feel (which has been pretty often).
Anyway, my bone marrow team at Cedars has sent off a kit to my sister to get typed for bone marrow. My regular physician has also sent off for my blood type test. When I get the results for both I will let everyone know.
Lastly, I am holding out as long as my body will allow me to on the Gleevec. It’s getting pretty tough. If I cant take it anymore my doctors will switch me to a new chemo. Either Spyracel or some other one.
I’ll try to keep everyone posted more often!
Love you all!
Love,
Ryan
Chemo-Sabi
I went to my Oncologist yesterday and they have increased my dose of Gleevec from 300 to 400mg per day. The side effects are the same just more of them. Lots of pain, chemo brain, having nausea, headaches etc… Same old same old!
I am thankful to still be around and to have the ability to get outpatient treatment. I’m also thankful for Jenifer. Without her my life would be pretty empty! She is always there to take care of me or listen to be complain about how I feel (which has been pretty often).
Anyway, my bone marrow team at Cedars has sent off a kit to my sister to get typed for bone marrow. My regular physician has also sent off for my blood type test. When I get the results for both I will let everyone know.
Lastly, I am holding out as long as my body will allow me to on the Gleevec. It’s getting pretty tough. If I cant take it anymore my doctors will switch me to a new chemo. Either Spyracel or some other one.
I’ll try to keep everyone posted more often!
Love you all!
Love,
Ryan
Chemo-Sabi
Wednesday, January 6, 2010
What a move!
Hi everyone!
It's been a very long time since I have posted so I thought I would give everyone an update! Lots of changes have been going on.
First I relocated to Santa Maria, California for my work. We love the place and its much nicer to come home from work rather than to a hotel!
Now, to my health.... I went to Cedars to see my bone marrow specialist. They typed me for my bone marrow and sent a kit off to my sister to get tested to see if she is a match. A bone marrow transplant is a last resort. If the chemo doesn’t work then I will have to have a transplant.
Last week I finally received the results of my PCR Able test. There are two tests that track the progress of my treatment. The FISH test, and the PCR Able. The FISH is about 1/10000 in terms of sensitivity, while the PCR is 1/100000. My FISH came up positive but my PCR came up negative on the three previous tests. This obviously doesn’t make sense.
Last week I received the results from a different lab for my PCR. Normal detects 0% of the cancer cells. Mine is 126%. According to my doctors I have a lot of cancer in my body. My doctor asked that I increase my chemo from 200 mg to 300 mgs immediately. The goal being to get me up to 400 mgs a day.
As you may remember in a previous post, when I started Gleevec at 400 I was a mess. I had to go back to the hospital because of the horrible side effects.
I have been taking 300 mgs for three days now and while it isn’t as bad as the first time, the side effects are pretty challenging. I can’t keep my eyes open after 7pm at night, the pain is so remarkable I can’t even explain it. Still have nausea, and I'm tired all of the time. There are more side effects, but those are the big ones.
I see my doctor next Friday again to re-evaluate. I'm hopeful that I can tough it out on this dose and make it up to 400 mgs. If my body can’t tolerate Gleevec there are two other drugs they can try.
That’s all for now! Need to get back to work!
Thank you for all of your thoughts and prayers!
Love, Ryan
"Chemo-Sabi"
It's been a very long time since I have posted so I thought I would give everyone an update! Lots of changes have been going on.
First I relocated to Santa Maria, California for my work. We love the place and its much nicer to come home from work rather than to a hotel!
Now, to my health.... I went to Cedars to see my bone marrow specialist. They typed me for my bone marrow and sent a kit off to my sister to get tested to see if she is a match. A bone marrow transplant is a last resort. If the chemo doesn’t work then I will have to have a transplant.
Last week I finally received the results of my PCR Able test. There are two tests that track the progress of my treatment. The FISH test, and the PCR Able. The FISH is about 1/10000 in terms of sensitivity, while the PCR is 1/100000. My FISH came up positive but my PCR came up negative on the three previous tests. This obviously doesn’t make sense.
Last week I received the results from a different lab for my PCR. Normal detects 0% of the cancer cells. Mine is 126%. According to my doctors I have a lot of cancer in my body. My doctor asked that I increase my chemo from 200 mg to 300 mgs immediately. The goal being to get me up to 400 mgs a day.
As you may remember in a previous post, when I started Gleevec at 400 I was a mess. I had to go back to the hospital because of the horrible side effects.
I have been taking 300 mgs for three days now and while it isn’t as bad as the first time, the side effects are pretty challenging. I can’t keep my eyes open after 7pm at night, the pain is so remarkable I can’t even explain it. Still have nausea, and I'm tired all of the time. There are more side effects, but those are the big ones.
I see my doctor next Friday again to re-evaluate. I'm hopeful that I can tough it out on this dose and make it up to 400 mgs. If my body can’t tolerate Gleevec there are two other drugs they can try.
That’s all for now! Need to get back to work!
Thank you for all of your thoughts and prayers!
Love, Ryan
"Chemo-Sabi"
Tuesday, December 8, 2009
PCR/Fish Testing
Hi everyone,
So.. it's been awhile and I bet you are all wondering how Ryan is doing.. His latest appt was yesterday at Holly Cross in LA to get his blood drawn and to find out his PCR able test results.
When a patient tests negative in the 20 cell cytogenetics test for the Ph chromosome as well as the 500 cell FISH test for the BCR-ABL fusion gene, there is still residual CML disease left in the body, sometimes a million leukemic cells or more. Polymerase chain reaction (PCR) test measures this low level disease by being able to detect 1 leukemic cell in a million or more normal cells by amplifying one leukemic cell into many copies. The PCR test is a molecular test and the results is the molecular response of a patient.
• Qualitative PCR gives a positive or negative value for the presence of disease.
• Quantitative PCR (Q-PCR) gives the level of disease positivity in numbers.
You follow the disease by PCR numbers in the same way you tracked the Ph chromosome when the disease load was high by other tests. These test are necessary when tracking how the bone marrow is making new blood as well as tracking recovery because the goal is to get to molecular remission and to stay that way.
While we where waiting on the lab to fax back the results Ryan and I where in the room and he was explaining the difference between Fish tests and PCR tests. Fish tests are less sensitive at detecting (PH) chromosomes than PCR tests and when they track recovery it's necessary to run more tests (PCR) to determine recovery and cancer cells to get an idea of the best options in fighting it. The doctor came in and said to us that the PCR test shows no signs of cancer, and she explained that that is NONSENSE in her words and if a less sensitive test (Fish) shows PH then most certainly the PCR will show up. Long story short they are going to retest and send to another lab as she thinks the blood could have been tampered with because it does have to be sent to another state.
Ryan has an appt on Fri to have his blood drawn again and get it sent to a more credible lab so that we can start tracking his progress and get an idea of when he will be in molecular remission.
Treatment is going well his white blood cells are up and down but they are significantly low, that just means that his chemo (Gleevic) is doing as it's supposed to so good news.. Other than that he has been really tired and a little forgetful but that's normal for his circumstance.
Thanks EVERYONE for all the love and continual support given and thanks for buying bracelets and donating to the Leukemia/Lymphoma society. Hopefully we will update soon life is hectic this time of year so forgive us in advance for not updating as much...
Hope you are all enjoying the holidays and are taking care of yourself and your loved ones!
Jenifer
So.. it's been awhile and I bet you are all wondering how Ryan is doing.. His latest appt was yesterday at Holly Cross in LA to get his blood drawn and to find out his PCR able test results.
When a patient tests negative in the 20 cell cytogenetics test for the Ph chromosome as well as the 500 cell FISH test for the BCR-ABL fusion gene, there is still residual CML disease left in the body, sometimes a million leukemic cells or more. Polymerase chain reaction (PCR) test measures this low level disease by being able to detect 1 leukemic cell in a million or more normal cells by amplifying one leukemic cell into many copies. The PCR test is a molecular test and the results is the molecular response of a patient.
• Qualitative PCR gives a positive or negative value for the presence of disease.
• Quantitative PCR (Q-PCR) gives the level of disease positivity in numbers.
You follow the disease by PCR numbers in the same way you tracked the Ph chromosome when the disease load was high by other tests. These test are necessary when tracking how the bone marrow is making new blood as well as tracking recovery because the goal is to get to molecular remission and to stay that way.
While we where waiting on the lab to fax back the results Ryan and I where in the room and he was explaining the difference between Fish tests and PCR tests. Fish tests are less sensitive at detecting (PH) chromosomes than PCR tests and when they track recovery it's necessary to run more tests (PCR) to determine recovery and cancer cells to get an idea of the best options in fighting it. The doctor came in and said to us that the PCR test shows no signs of cancer, and she explained that that is NONSENSE in her words and if a less sensitive test (Fish) shows PH then most certainly the PCR will show up. Long story short they are going to retest and send to another lab as she thinks the blood could have been tampered with because it does have to be sent to another state.
Ryan has an appt on Fri to have his blood drawn again and get it sent to a more credible lab so that we can start tracking his progress and get an idea of when he will be in molecular remission.
Treatment is going well his white blood cells are up and down but they are significantly low, that just means that his chemo (Gleevic) is doing as it's supposed to so good news.. Other than that he has been really tired and a little forgetful but that's normal for his circumstance.
Thanks EVERYONE for all the love and continual support given and thanks for buying bracelets and donating to the Leukemia/Lymphoma society. Hopefully we will update soon life is hectic this time of year so forgive us in advance for not updating as much...
Hope you are all enjoying the holidays and are taking care of yourself and your loved ones!
Jenifer
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