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

Happy Thanksgiving!

Hi everyone!

The last few weeks have been slowly getting a little better to manage. The side effects are still the same although I am beginning to see new side effects! My skin is starting to peel, and my eyes are starting to hurt. I’ve been told that after the eye pain comes the eye bleeds. This is a normal side effect as the blood vessels pop from the chemo….

When I look at the big picture I feel very thankful I am in the situation I am in! It could be much worse! This Thanksgiving is a special one for me!

Thank you to everyone who has been purchasing the bracelets! I am also in the process of setting up a foundation for cancer research. I am currently looking for people that want to join me and be on my board. My foundation is going to be focused on the social similarities of CML patients.

More to come!

Happy Thanksgiving!

Love,
Ryan

We Support Ryan Bracelets

Hi Everyone!!! Bracelets have finally come, so if you want one click on the box below and fill out your info and I'll get them out to ya! If you want several there is a link on the side bar with the drop down menu to get several if need be. Thanks for your support!!!

** Click on pic to enlarge***They glow in the dark too!

Update on Chemo

Hi everyone!

I wanted to give everyone an update on how things are going. This past week has been about the same in terms of side effects. I think my body is starting to get used to the chemo. I've found it pretty easy to control having nausea. The pain is also pretty manageable. I am gaining weight because one of the side effects is retaining water. My skin is also pealing which I think is another side effect!

My friends and I at CML2 are going to plan a get together soon so we can all meet each other. That should be a good time!

I'm also keeping myself pretty busy. As most of you may know I love music! I also mix music. This weekend I finally bought my Mac so I can start making music! Its been a lot of fun!

As a side note please remember that at night I do not answer my phone unless you leave a message and its an emergency. I take my chemo at night and it makes me feel very crummy.

Also, the wristbands have come in and they are on the way to Jenifer. I also have about 100 that I will have on me. If you live in CA and want one I can ship them off to you. They are 5.00 each and 100% of the money will go to the Leukemia and Lymphoma Society for Cancer research.

Thanks everyone! Love you!

Ryan

Rough week! Feel a little better now…

Hi everyone!

Man last week was a rough one.... As you all know I have been taking my new chemo Gleevec 400 mg once a day now for a week. Well after day three it caught up with me! I can deal for the most part with nauseous but not with pain! On Monday my whole body began to ache like I had arthritis or something. Then it moved into my bones as a deep throbbing pain. Tuesday - Thursday was by far the worst. The pain intensified and along came fevers, and chills.

Finally on Friday I went back to the doctor and asked what was wrong with me. She looked at me and said "Ryan, you have cancer." The pain you are feeling is the cancer trying to leave. Man was it ever!

My doctor dropped my dose to 200 mg per day to help with the side effects. Now at least Tylenol and Motrin will touch the pain!

I feel much better today. Thank you all for your thoughts and prayers! Things will get better! They can’t get much worse after last week!

Love, Ryan

You know life is funny....

Hi everyone,

The chemo is taking it's toll on me. I'm sorry if I am not very social but I have been struggling for the past several days. I hate to complain as I feel very blessed that I am alive.

That said, I just found out that my cousin was just diagnosed with ALL. This is very sad news. I am posting the link to his site below. Please take a look when you have some free time.

www.carsonwiener.com


Love,
Ryan
"Chemo-Sabi"

For Allison....

For my friends at CML2. Allison has created a very powerful website that I hope you will visit to see her father’s story. Here website is www.cancercloud.org

Keep fighting!

Chemo-Sabi