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

Doctors Update!

Hi everyone!!!

Good news! the new chemo is working! After just three days my WBC has dropped in half! It went from 68,000 to 38,000. My doctors are closely monitoring my levels as they are now concerned about my blood counts getting too low.

My next appointment is on 11/16.

You know people always ask me "are you doing ok, how's the treatment going, man I'm so sorry this happened to you, etc...."

This whole experience has taught me a lot. Most of all- it has humbled me in more ways than I can express on this blog. It really puts life into perspective. Each time I walk in to see my team of doctors at the cancer center I see so many cancer survivors that have heart stints with tubes sticking out pumping chemo through their hearts.... I feel blessed. I am so thankful that I am dealing with a cancer that is treatable by outpatient chemo. I'm thankful to all of my friends and family that have been here for me. My team at work, my friends at CML2- EVERYONE! Thank you from the bottom of my heart!

As I was sitting in the waiting room yesterday when I ran into my good friend Mike. He was my neighbor when I was in the hospital who came by to say hi and comfort me when he heard the news that I have the same cancer as he does. We talked about our side effects from chemo and what we want to do when this crap is done.... Friends like him are what makes this fight so important!

Thank you again for all of your prayers!

Love you all!
Ryan

It's Not So Bad!

Hi everyone!

Thank you for all of your continued love and prayers. I thought I would update everyone as I was not up to talking much over the weekend.

I have to tell you.... either I prepared myself really well, or this Gleevec is candy corn (hehe just kidding!) My friends at CML2 call it our gold!.

The side effects are totally manageable. I feel very blessed to have cancer that is managed by chemo in pill form!

Ok, I need to take my Ritalin I can’t focus right now... another side effect of Gleevec!

Oh yeah I now have short term memory loss... another side effect.

Thanks everyone!

Love you all!

How are you?? Better than Bad! I can't complain!

Hi everyone!
I made it! First night of Gleevec was not as bad as I had prepared for! Most of you have been asking how I am doing (I can’t keep up with the VM, text, and emails- sorry!)

Nausea- This tripled!
Liquid poop! - YUM
Body aches
Eyes swelling- boy do I look pretty!
Itching

The good news is I think I can manage this without a nurse! :) I am hopeful that this will get better. I have made a lot of new friends at this message board http://health.groups.yahoo.com/group/CML2/

They tell me that it will take me about a month to adjust to the new chemo. I can handle that! This group is awesome! They all have the same cancer as me so they can relate to exactly what I'm going through!

Anyway, I need to clean my house. I have been so tired that I haven’t been able to clean much. Those of you who know me know, that I am going crazy! :)

Thank you all for your love and prayers!

Have a great Halloween!
Love,
Ryan "Chemo-sabi"

Update from Ryan! 10.29.09

Headaches suck! Tomorrow is the big day for the new chemo..... I have an idea.... Does anyone want to make a bet with me? The bet is, I will shave my head if I don’t stop smoking by the end of the year..... If I do.... you have to shave yours!

Those of you who know me, know that I own clippers.... I will find you and shave you if you back out!

Any takers?
:)

P.S. I might end up shaving sooner just to get ready for winter:)

Update from Jen

Ryan had his appointment today with the cancer society to get his blood checked and to see how/if the chemo given has helped and to answer some needed questions Ry has. So far his blood count was at 68,000. He was excited to hear that it had gone down but was disappointed when the nurse said that they where looking for a significant decrease, roughly it should be at 40,000's. They said that the chemo he is on now isn't working and will have to up his dose with another type of chemo. So... not good news but he's optimistic and has high hopes.

We also found out more about his diagnosis, they found a chromosome (PH) - short for Philadelphia chromosome- (Ph): The chromosome abnormality that causes chronic myeloid leukemia (CML).

The Ph chromosome is an abnormally short chromosome 22 that is one of the two chromosomes involved in a translocation (an exchange of material) with chromosome 9. This translocation takes place in a single bone marrow cell and, through the process of clonal expansion (the production of many cells from this one mutant cell), it gives rise to the leukemia. SO.. basically the cells are mutating and his doctors need to do more research on what stage he is at. Remember on the first post I had mentioned the phases of CML? if not here they are again-
The chronic phase (when symptoms are not severe and, with treatment, a person's WBC count can be nearly normal or normal)
The accelerated phase (when WBC and platelet counts may be abnormal and the person may feel ill)
The blast crisis phase (when WBC and platelet counts become very abnormal; bleeding, infections, and other problems can happen)
They believe that it may be in the second phase but need to do more test to be sure. He was given Gleevec (chemo)at a higher dose and will be going back on Monday to have more blood tests. In my research I have heard both good and bad about the drug, as far as side effects goes but it is necessary and where praying that he comes out with no residual long term effects.

However this is not good news and discouraging Ryan is staying strong, he has always been a man of little words, this is just a battle and he will fight until the end!

I just want to thank everyone for all the love and support given! He has been doing a lot of research and gives thanks to those for sending books to keep him occupied.
Please be understanding if you don't get his voice on the line or replies to emails, IM ect... He just needs time to think and digest all the info given to him. He will get to you and asks that I post often to keep everyone in the loop.

Also, we will be selling charity bracelets in the next week or so for $5, just waiting for shipment. So once we have them we will take pics and post a link where you can buy them.

Thanks again everyone!

God and Dog

Ryan has a special relationship with his dogs, this is a video that really helps me understand why.

Update from Ryan!

Hi everyone!

Jenifer is the professional with this stuff so I am hoping that after I write this it actually makes it to the site! Thank you all for all of your prayers, calls, emails, gifts and everything else!

For those of you that know me very well- know that I am a fighter. I feel truly blessed that this was found early, and that it’s not super aggressive (at least not right now... :)).

I started taking my chemo on Saturday. It's not very fun.... The best way to describe it is having a super crappy hangover! I am doing some trial and error with when I take it, with or without food, etc... Right now I am going to stick with taking it around 3pm each day. Don’t expect me to answer my phone after that! Mornings are good and work is what keeps me going!

I am meeting with my doctors on Wednesday at 10am PST at the cancer center. At which point they will tell me how aggressive they need to be with the chemo, blood transplants and/or bone marrow. I will update everyone then.

Thank you again for all of your support. I have a meeting with the Leukemia and Lymphoma Society this week to learn how I can join their team to search for the cure. Also Kelly and Taylor Max will be sending out bracelets for a $5 donation in the next few weeks. All donations will go towards finding a cure! I have a job and can pay my medical bills (I think... :)

Thanks again everyone! Go Alex Smith and the 49ers!

Love,
Ryan Romero

This is what keeps me going.It's touched my life in so many ways!!

I have been diagnosed with CML(Chronic Myeloid Leukemia) on Oct 23, 2009, after spending two nights in the Holy Cross ER. Finally in the afternoon after my blood smear was compared to the bone marrow biopsy. Lets Back up and educate you if you are not sure what Leukemia is or the types. The following is a lot of information but will give you a full understanding of what specific cancer this is.

Here is a picture of my marrow-----> ------>>>






What is CML (Chronic Myeloid Leukemia)?
CML (chronic myeloid leukemia or chronic myelogenous leukemia) is a cancer of the blood and bone marrow (soft tissue within bones). Blood cells are made in the bone marrow.

Within the bone marrow, stem cells (an early cell that matures into various types of blood cells) divide and mature into 3 types of blood cells:
Red blood cells (RBCs), which carry oxygen to other cells in the body
White blood cells (WBCs), which fight infection
Platelets, which help blood to clot
To understand more about CML, it may be useful to see how blood cells normally develop.

*There are several kinds of white blood cells, but neutrophils and basophils are among those commonly monitored in CML.
CML is a slow-growing blood cancer that develops when DNA (genetic material) of a stem cell is changed. This change causes the bone marrow to make too many WBCs. The crowded cells cannot do their jobs very well. Over time, WBCs crowd out healthy RBCs and platelets. This causes the signs of CML.
In the very early phase of CML, many people show little or no symptoms of illness. This is because the WBCs are working normally, even if there are too many of them. A routine blood test called a complete blood count (CBC) may be able to detect the first sign that there are too many WBCs.
________________________________________________
Possible signs of CMLMany of the signs of CML happen slowly over time. The following and other signs may be caused by CML:
*Not feeling well
*Feeling very tired
*Losing weight without dieting
*Fever
*Sweating at night
*Pain or an uncomfortable feeling on the left side of the abdomen because of an *enlarged spleen
________________________________________________
Who gets CML?About 4,500 people, mostly adults, are diagnosed with CML each year in the United States. The median age for people receiving a CML diagnosis is 67 years. Some of them will have signs that tell them something is wrong. Others may not have any signs or symptoms, especially in the beginning.
The phases of CMLCML has 3 phases:
The chronic phase (when symptoms are not severe and, with treatment, a person's WBC count can be nearly normal or normal)
The accelerated phase (when WBC and platelet counts may be abnormal and the person may feel ill)
The blast crisis phase (when WBC and platelet counts become very abnormal; bleeding, infections, and other problems can happen)
Most people find out that they have CML in the early, chronic phase. Advances in treatment are helping many more people remain in the chronic phase without moving to the more advanced phases of CML.

So with all of that said, here is how it all started and don't blink because that is how fast it went- Monday the 19Th of Oct, I went in for a routine check up and had the works including my blood drawn. No big deal just standard procedure. Wed the 21st I get a call from my Doctor saying that my white blood cell count was abnormally high and they wanted me to go in and get another test done. The next morning I went to the local hospital had them draw the blood and went on my way, my doctor called me shortly after and advised me that my WBC count was 78,000 and a normal persons count would be 4,000! 10,000 is a number that someone would have if they where really sick! I didn't quite understand what he was saying but the little he said was that he wanted me to go to the Holy Cross Hospital in LA. Not really understanding why I couldn't just go to a local Hospital, I got in my car and took Milo (my doggy) to my assistants home to watch not knowing what was in store. I was speaking with my assistant and asked her to go find out what this specific hosp my doctor was being so vague about, she came back and told me that this was specifically a cancer specialist hospital..

Now I'm freaked out and had to commute from Santa Maria driving up the coast to get to this Cancer Hospital. I'm sure you can imagine the thoughts that ran through my head!!!! I get the the ER and there where so many people waiting to be seen but luckily my own doctor showed up to assist me, so I got a room and that's when the poking and prodding started.. I was admitted on Wed at 2:00 PM and that's when all the testing began. I was extremely lucky that I didn't have a stroke being that my blood was so thick, so between the Bone marrow biopsy (painful)!!!, blood thinners, CT's, needles, I had had enough.. I was given all the literature on Leukemia before I was diagnosed so I was sure that is what was going on inside of me inside room 333... It was just a matter of time before I was told what type it was and the plan of action.

On Friday Oct 23, I was given the diagnosis where I would wait for my Oncologist to get me the low down on what we where doing to get me better. They gave me a low dose prescription for Chemotherapy and discharged me later that evening. I was told by the doctor I was to come back on Wed, Oct the 28Th for more Chemo. I still not to sure what will happen as I'm going through this day by day. I will keep all of you in the loop as to what is going to happen as I know.

So here we are and these are my first days of healing from this sickly disease they call cancer, Please join me on my recovery! I hope to encourage all those out there that are going through the samethings as I to stick in there cause we will beat this!!! Also I want everyone to be aware that this can just creep up on you and statistically chances of beating this is easier in the early stages! SO GO GET CHECKED UP!!! I also encourage all of you that can and are able to donate blood and bone marrow ,do it cause each donation of blood can help save 3 lives! True Statistic!!! For more insight on why it's important, follow this stat link, it will blow you away!

Thanks so much for the support and love you all have given...
PLEASE HELP US IN FINDING THE CURE, Awareness is everything!!!