Ok, so I got my test redone and it came back as still going down. Not sure why the hiccup but at least I don’t have to try a new chemo! I will get re-tested in December and hopefully I will be close to molecular remission!
Thanks everyone for your support!
Thursday, September 23, 2010
Tuesday, August 24, 2010
Interesting News....
Hi everyone!
I need to do a better job updating my blog. My life has been pretty busy and when you add to that my quality of life from the meds I take, it makes it rather hard to find the time to update! That said, I received some interesting news yesterday. Not sure what this means yet but I will keep you posted.
Yesterday I received a call from my doctors at Holy Cross. They told me that the results from my last PCR ABL test came back (that’s the test that is used to determine the amount of cancer left in my body). My results have gone up not down like they have for the last four tests I have taken. This means that it could have been a false positive OR- my chemo is not working anymore. The doctors have requested that I wait another two more weeks and then go get tested again. This will validate what the issue is. If it goes up again, Gleevec has stopped working. If it goes down then the test was wrong and all is good.
I have talked to some of my friends at CML2 and they tell me that if my chemo has stopped working then they will most likely try another drug. Hopefully the new drug will kill the cancer and I can get into Molecular Remission. If the new chemo does not work. I may need to have a BMT (Bone Marrow Transplant). I don’t wish that upon anyone. If you’re interested in finding out what a BMT is, Google it. It’s not a fun stay at the hospital!
Hopefully the test was wrong and I can continue with the chemo. I’ll even settle for a new chemo with new side effects. Thanks everyone for your continued support! I will updated everyone after I get the results back. I will re-take the test the week of September 13th.
Love,
Chemo-Sabi
Ryan Romero
I need to do a better job updating my blog. My life has been pretty busy and when you add to that my quality of life from the meds I take, it makes it rather hard to find the time to update! That said, I received some interesting news yesterday. Not sure what this means yet but I will keep you posted.
Yesterday I received a call from my doctors at Holy Cross. They told me that the results from my last PCR ABL test came back (that’s the test that is used to determine the amount of cancer left in my body). My results have gone up not down like they have for the last four tests I have taken. This means that it could have been a false positive OR- my chemo is not working anymore. The doctors have requested that I wait another two more weeks and then go get tested again. This will validate what the issue is. If it goes up again, Gleevec has stopped working. If it goes down then the test was wrong and all is good.
I have talked to some of my friends at CML2 and they tell me that if my chemo has stopped working then they will most likely try another drug. Hopefully the new drug will kill the cancer and I can get into Molecular Remission. If the new chemo does not work. I may need to have a BMT (Bone Marrow Transplant). I don’t wish that upon anyone. If you’re interested in finding out what a BMT is, Google it. It’s not a fun stay at the hospital!
Hopefully the test was wrong and I can continue with the chemo. I’ll even settle for a new chemo with new side effects. Thanks everyone for your continued support! I will updated everyone after I get the results back. I will re-take the test the week of September 13th.
Love,
Chemo-Sabi
Ryan Romero
Thursday, July 1, 2010
Same Old....
Hi everyone!
It’s been a while since I have posted on here. We just got back from our vacation and with work I have been super busy!
Nothing new with the meds. I am still taking my chemo every day. The side effects are the same which makes life challenging some days.
I received my latest BCR ABL test back which showed another log reduction. This means the chemo is working and the cancer is leaving my body! My doctor tells me that I may be in molecular remission by November/December. At which point the cancer will be out of my blood, and the challenge will now be how to keep it out? I will be seeing my regular doctor in a few weeks to get my blood sugar tested.... More to come on that!
That’s all for now! Thanks for all of your support!
It’s been a while since I have posted on here. We just got back from our vacation and with work I have been super busy!
Nothing new with the meds. I am still taking my chemo every day. The side effects are the same which makes life challenging some days.
I received my latest BCR ABL test back which showed another log reduction. This means the chemo is working and the cancer is leaving my body! My doctor tells me that I may be in molecular remission by November/December. At which point the cancer will be out of my blood, and the challenge will now be how to keep it out? I will be seeing my regular doctor in a few weeks to get my blood sugar tested.... More to come on that!
That’s all for now! Thanks for all of your support!
Friday, April 30, 2010
Engaged.....
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!
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!
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"
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