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"
Saturday, October 31, 2009
Thursday, October 29, 2009
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:)
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:)
Wednesday, October 28, 2009
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!
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!
Tuesday, October 27, 2009
God and Dog
Ryan has a special relationship with his dogs, this is a video that really helps me understand why.
Monday, October 26, 2009
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
Saturday, October 24, 2009
Friday, October 23, 2009
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.
Thanks so much for the support and love you all have given...
PLEASE HELP US IN FINDING THE CURE, Awareness is everything!!!
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!!!
Subscribe to:
Posts (Atom)
