I have determined that this blog now serves another purpose. In addition to keeping family members and friends informed and providing help to other people with MS who are considering this procedure, it will also be a lot of help at letting Chris know exactly what happened during this process. After the last few days I have decided that Chris will remember very little of this part of the procedure (probably a good thing) due to high fevers, high amounts of pain medication and just a lot of drugs overall.
Last night was definitely the roughest night ( you may sense this from my last post). We learned that Chris does not do well with morphine. While it did wonders for his pain, with all of the morphine building up throughout the night, he was really freaking out at night. They took him off the pain killer and gave him a drug to calm him down. He ended up having a bad reaction to this drug and in addition to the morphine, he became extremely anxious and disoriented When I came back from getting dinner he was extremely angry and convinced that his IV pump was broken (at this point he wasn't even hooked up to it). They gave him a bunch of sedatives and asked me to leave the room while they calmed him down. By 4:00 am I was able to come back in his room and he was a lot better.
They continued to give him anti-anxiety medication throughout the day until the morphine is out his system. They have switched him to Fentanyl, which is short lasting. The benefit of this drug is that it will not stay in his system long and therefore he is less likely to get the negative side effects from it.
Today was a much quieter day. Chris got to have a shower, which really made him feel a lot better. It probably didn't hurt that he had me and two other nurses helping him out since he was pretty drugged up.
His counts stayed relatively the same:
WBC: 0.1
Hemoglobin: 87
Platelets: 18 (this meant that he did not need to have a platelet infusion today)
Neutrophils: 0.0
I am really hoping for a bone marrow transplant miracle and that all of sudden Chris is going to wake up with a higher WBC and Neutrophil count. Usually the earliest this can happen is Day +10, but since he was so good at growing stem cells with the neupogen last time (see stem cell collection portion of the blog), I just want the same to hold true this time around. We could use some good news and Chris seems to do everything differently.
Coming into this we were told all about the bad side effects of the chemo. Chris really hasn't had any of them, but has invented his own set of symptoms. We were warned about loss of appetite, nausea, extreme fatigue, diarrhea and mucocitis (sores all over your mouth and throat).Other than the infection and fever, Chris has really not been affected by any of the regular symptoms (knock on wood!!), but he has bad pain, anxiety and has trouble sleeping. He really likes to do things his own way, so I just keep hoping that this own way involves an impressive recovery that brings him back to his regular self in time for Christmas. The hardest part for me during this part of the procedure is not being able to talk to" non-drugged-out Chris". I really miss him.
Finally, I would just like to thank our amazing friends that shovelled our driveway today. It was amazing to come home tonight to have one thing taken off my plate. I told Chris and he thought it was pretty cool too.
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Sunday, December 19, 2010
Saturday, December 4, 2010
Day -9
Chris is now halfway through the Busulphan now and starting to get some side effects from the chemo and the drugs.
His blood results showed that his kidney was having trouble with chemo, so they told Chris he needs to try and drink a lot more liquids to try and dilute the chemo.
His blood sugar is also pretty high, which apparently is pretty common with one of the drugs he is on. They are going to monitor it and if they don't come down, they will try putting him on something else.
Some of the other side effects are not as serious and others are a litttle humourous. Chris definetly has been sufferieng from a little bit of "chemo fog." He came downstairs to grab a pair of scissors to cut open a milk bag and ended up going upstairs with the TV remote.
My favourite example of his mind lapses came when he was Christmas shopping online for me last night. Chris wanted to surprise me this year and pick out a gift without any hints.
After he had been on the laptop for an hour and did his best to make sure I didn't see the screen, he glanced over at his pills and said, "Do any of my jewellery cause these side effects?" He then looked at my shocked and said, " I mean do any of my gifts cause...I mean do any of my medications cause these side effects?" I guess he sort of let it slip what I was getting for Christmas this year, but I can't say that I am that disappointed. Chris on the other hand has been beating himself up that he managed to ruin another surprise.
To cheer him up, we spent the night decorating the house and our beautiful tree for Christmas! We have photos for your enjoyment :)
Unfortunately, in addition to the mind lapses, Chris also had a really hard time falling asleep last night. He took an Ativan at 10:30 when we went go to sleep, but still had not fallen asleep at 4:30. He took another Ativan at 4:30, which seemed to work and he was able to sleep until 7:30 when we got up to go to chemo this morning. When he woke up however, he had absolutely no balance. He looked like he had been drinking heavily as he walked around to the bathroom, and I needed to steady him multiple times. While some of the drugs can cause dizziness, they also think that for some reason the Ativan or another drug has triggered an MS symptom. They perscribed him another sleeping pill for tonight and they hope to see an improvement by tomorrow.
Today's chemo was mostly uneventful. We arrived at 9:00 and Chris was hooked up by 10:45. We also had a room to ourselves today, which was really nice! Chris' nurse also tried putting on a different dressing on his PICC line, because it was still really red and irritated.
For the rest of the night, we are just planning on taking it easy and hopefully getting some much needed sleep!
His blood results showed that his kidney was having trouble with chemo, so they told Chris he needs to try and drink a lot more liquids to try and dilute the chemo.
His blood sugar is also pretty high, which apparently is pretty common with one of the drugs he is on. They are going to monitor it and if they don't come down, they will try putting him on something else.
Some of the other side effects are not as serious and others are a litttle humourous. Chris definetly has been sufferieng from a little bit of "chemo fog." He came downstairs to grab a pair of scissors to cut open a milk bag and ended up going upstairs with the TV remote.
My favourite example of his mind lapses came when he was Christmas shopping online for me last night. Chris wanted to surprise me this year and pick out a gift without any hints.
After he had been on the laptop for an hour and did his best to make sure I didn't see the screen, he glanced over at his pills and said, "Do any of my jewellery cause these side effects?" He then looked at my shocked and said, " I mean do any of my gifts cause...I mean do any of my medications cause these side effects?" I guess he sort of let it slip what I was getting for Christmas this year, but I can't say that I am that disappointed. Chris on the other hand has been beating himself up that he managed to ruin another surprise.
Unfortunately, in addition to the mind lapses, Chris also had a really hard time falling asleep last night. He took an Ativan at 10:30 when we went go to sleep, but still had not fallen asleep at 4:30. He took another Ativan at 4:30, which seemed to work and he was able to sleep until 7:30 when we got up to go to chemo this morning. When he woke up however, he had absolutely no balance. He looked like he had been drinking heavily as he walked around to the bathroom, and I needed to steady him multiple times. While some of the drugs can cause dizziness, they also think that for some reason the Ativan or another drug has triggered an MS symptom. They perscribed him another sleeping pill for tonight and they hope to see an improvement by tomorrow.
Today's chemo was mostly uneventful. We arrived at 9:00 and Chris was hooked up by 10:45. We also had a room to ourselves today, which was really nice! Chris' nurse also tried putting on a different dressing on his PICC line, because it was still really red and irritated.
For the rest of the night, we are just planning on taking it easy and hopefully getting some much needed sleep!
Wednesday, November 3, 2010
Day 21 - A Setback
So today we ended up going into the hospital where we received both good news and bad news. To start, we ended up going into the hospital because last night it appeared that the rash that Chris was having had spread to the rest of his body. He had marks all over his stomach, chest, back and head. When we called the hospital to let them know, they were a little concerned and asked us to come in so that Dr. Atkins could take a look at Chris.
So here is the good news:
- The rash was nothing serious. It turns out all the marks all over his body are seperate to the ones on his arm. The ones on his arm are likely an allergic reaction to the tape that they used when he had his stem cell collection. The marks on his body are due to Folliculitis (an infection of the follicles). It is nothing serious and they will likely clear up on their own. It apparently is really common in immunocompromised patients. Chris needs to continue using the hydrocortisone and it should clear up.
Here is the even better news:
- When Dr. Atkins walked in the first thing he said to Chris was, "Wow, you still have all your hair! Are you sure you even had chemo?" That definetly felt great to hear. Everyone seemed surprise with how well Chris is doing. Chris also was cleared to have visitors as long as they aren't sick, to go out to restaurants (as long as it not fast food or any of the high risk foods), and to leave the house (as long as we aren't going to really busy areas, i.e. the mall on weekends, the movies or sporting events).
Now here is the bad (and frustrating) news:
- We found out today that since the bone marrow transplant (BMT) team received an ususally high number of leukemia patients this Fall, that Chris is now being bumped until the beginning of December. They can only have a limited number of patients go through the BMT at the same time, and since leukemia patients are much more time sensitive and in a far more serious condition, they get to go first. It is completely understandable and extremely frustrating at the same time. We were hoping after we heard how great Chris was doing that we could start as early as next Thursday and now we have another month of waiting and thinkng and more waiting.
We also now need to change our plans. Originally I was planning on taking off work until the end of December, work from home in January and then return in February. Now that Chris won't be starting until December he will still be needing me to be off work until the end of January. Since I am already maxed out on sick leave, I will need to look at working from home right now. Chris' doctor does not think that Chris should be going back to work. Even though he feels fine, he is still susceptible to infection and if he overexerts himself or comes into contact with people who are sick, it could delay his BMT even longer. The longer we wait, the more likely Chis will have a relapse since he is not on any MS medications.
Finally, we did get some updates from Dr. Atkins on the procedure. Since we had been seeing a bunch of different doctors, we had been getting a lot of different answers when asked about the specifics of Chris' procedure. Since Dr. Atkins is the expert on the treatment for MS patients, he was able to clarifiy some things for us. Instead of having a Hickman catheter, Chris will have a peripherally inserted central catheter (PICC), which will be inserted in a vein in his arm and fed up his vein into his chest (kind of gross!) He will be able to keep it in for six months, and he will need to keep it dry.
We also learned about the chemo regimen Chris will be on. He will start with four days of busulfan, one day of rest, then four days of cyclophosphamide, then another day of rest, and then two days of antithymocyte globulin.
So now that we have a better grasp on what we can expect, he unfortunately will not be getting it until December.
So here is the good news:
- The rash was nothing serious. It turns out all the marks all over his body are seperate to the ones on his arm. The ones on his arm are likely an allergic reaction to the tape that they used when he had his stem cell collection. The marks on his body are due to Folliculitis (an infection of the follicles). It is nothing serious and they will likely clear up on their own. It apparently is really common in immunocompromised patients. Chris needs to continue using the hydrocortisone and it should clear up.
Here is the even better news:
- When Dr. Atkins walked in the first thing he said to Chris was, "Wow, you still have all your hair! Are you sure you even had chemo?" That definetly felt great to hear. Everyone seemed surprise with how well Chris is doing. Chris also was cleared to have visitors as long as they aren't sick, to go out to restaurants (as long as it not fast food or any of the high risk foods), and to leave the house (as long as we aren't going to really busy areas, i.e. the mall on weekends, the movies or sporting events).
Now here is the bad (and frustrating) news:
- We found out today that since the bone marrow transplant (BMT) team received an ususally high number of leukemia patients this Fall, that Chris is now being bumped until the beginning of December. They can only have a limited number of patients go through the BMT at the same time, and since leukemia patients are much more time sensitive and in a far more serious condition, they get to go first. It is completely understandable and extremely frustrating at the same time. We were hoping after we heard how great Chris was doing that we could start as early as next Thursday and now we have another month of waiting and thinkng and more waiting.
We also now need to change our plans. Originally I was planning on taking off work until the end of December, work from home in January and then return in February. Now that Chris won't be starting until December he will still be needing me to be off work until the end of January. Since I am already maxed out on sick leave, I will need to look at working from home right now. Chris' doctor does not think that Chris should be going back to work. Even though he feels fine, he is still susceptible to infection and if he overexerts himself or comes into contact with people who are sick, it could delay his BMT even longer. The longer we wait, the more likely Chis will have a relapse since he is not on any MS medications.
Finally, we did get some updates from Dr. Atkins on the procedure. Since we had been seeing a bunch of different doctors, we had been getting a lot of different answers when asked about the specifics of Chris' procedure. Since Dr. Atkins is the expert on the treatment for MS patients, he was able to clarifiy some things for us. Instead of having a Hickman catheter, Chris will have a peripherally inserted central catheter (PICC), which will be inserted in a vein in his arm and fed up his vein into his chest (kind of gross!) He will be able to keep it in for six months, and he will need to keep it dry.
We also learned about the chemo regimen Chris will be on. He will start with four days of busulfan, one day of rest, then four days of cyclophosphamide, then another day of rest, and then two days of antithymocyte globulin.
So now that we have a better grasp on what we can expect, he unfortunately will not be getting it until December.
Sunday, October 31, 2010
Day 18 - What is MS?
Happy Halloween Everyone!
We decorated the house today and are in costume as we speak (we are bikers! - yes, not very original, we know). Chris is still taking allergy medication for the hives that are still down both of his arms. He has also developed bruising down one arm, which we think is due to his low platelet level. We are planning on giving the hospital a call tomorrow just to make sure we have nothing to worry about.
Chris is currently at his "Nadir", which means the low point in time between chemotheraphy cycles in which you experience low blood counts. From this point onward his blood counts should be going up.
Recently we have been recieving a bunch of questions from people following our blog that they aren't 100 per cent sure what MS is and how giving Chris a new immune system will help. To be honest, Chris and I both had no idea what multiple sclerosis was when he was first diagnosed. And until things started getting more serious I didn't even really understand the science behind it.
So here is a quick rundown of how it works. Please keep in mind this is just my understanding from reading and talking to doctors so there may be some errors!
What is MS?
Multiple sclerosis (MS) is a disease which progressively injures the nerves of the brain and spinal cord. People without MS have nerve cells that are covered by an intact protective layer known as the myelin sheath. Nerve cells are made up of neurons that have a head called the nucleus and a long strand that is called the axon, which is covered in the myelin sheath. This covering helps to speed electrical signals in the brain. In people with MS, for an unexplained reason, the T-cells (which make up your white blood cells) recognizes the myelin in the brain and spine as a threat to the body and attacks it. This is known as demyelinization. When the myelin sheath thins and breaks down, the, electrical signals can't travel between the neurons.
Although the myelin can rebuild itself, the rate of demyelinization caused by MS is too rapid for it to keep up. The damaged parts of myelin are often called “lesions” or “plaques”.
Basically, you just need to think of a lamp: You have a lightbulb that recieves it signal from a copper wire. The wire is wrapped with plastic to protect it. If you start losing parts of the plastic the wire will start to rust and eventually the light won't be able to turn on.
This demyelinization can cause a wide range of symptoms such as:
- muscle stiffness or spasms
- cognitive problems (e.g., memory loss)
- dizziness and sensations of spinning
- mental health problems (e.g., depression)
- extreme tiredness
- difficulty walking
- headache
- paralysis
- bladder problems
- bowel problems
- hearing loss
- itching
- numbness and tingling
- pain
- seizures
- speech and swallowing problems
- shaking
- vision problems
MS has its most striking effect on motor and sensory neurons, which generally have long axons carrying information between the brain, spinal cord, and the rest of the body. Because these axons are longer, they have a greater need for the insulation myelin provides and are therefore most affected by its destruction.
What causes MS?
Nobody knows for sure what causes MS, but most scientists agree that it involves a combination of environmental and genetic factors. Different factors that are linked to MS include:
- Cold Climates/ Lack of Vitamin D: MS occurs most commonly in those living in northern climates. Apparently, where you spend the first 15 years of your life plays a role in your odds of developing MS. Canadians have one of the highest rates of multiple sclerosis in the world. (see map)
- Infection: Researchers believe that many autoimmune diseases are provoked by some kind of infection that may affect people differently who have a certain genetic makeup. The infection can trick your body's immune system into attacking your own tissues, even after the infection has gone.
- Family history: While scientisits have determined that there is no MS gene, research has shown that you are more likely to get MS if someone in your family has it.
So there is my little (or not so little) explanation of MS. Hope it makes sense!
We decorated the house today and are in costume as we speak (we are bikers! - yes, not very original, we know). Chris is still taking allergy medication for the hives that are still down both of his arms. He has also developed bruising down one arm, which we think is due to his low platelet level. We are planning on giving the hospital a call tomorrow just to make sure we have nothing to worry about.
Chris is currently at his "Nadir", which means the low point in time between chemotheraphy cycles in which you experience low blood counts. From this point onward his blood counts should be going up.
Recently we have been recieving a bunch of questions from people following our blog that they aren't 100 per cent sure what MS is and how giving Chris a new immune system will help. To be honest, Chris and I both had no idea what multiple sclerosis was when he was first diagnosed. And until things started getting more serious I didn't even really understand the science behind it.
So here is a quick rundown of how it works. Please keep in mind this is just my understanding from reading and talking to doctors so there may be some errors!
What is MS?
Although the myelin can rebuild itself, the rate of demyelinization caused by MS is too rapid for it to keep up. The damaged parts of myelin are often called “lesions” or “plaques”.
Basically, you just need to think of a lamp: You have a lightbulb that recieves it signal from a copper wire. The wire is wrapped with plastic to protect it. If you start losing parts of the plastic the wire will start to rust and eventually the light won't be able to turn on.
This demyelinization can cause a wide range of symptoms such as:
- muscle stiffness or spasms
- cognitive problems (e.g., memory loss)
- dizziness and sensations of spinning
- mental health problems (e.g., depression)
- extreme tiredness
- difficulty walking
- headache
- paralysis
- bladder problems
- bowel problems
- hearing loss
- itching
- numbness and tingling
- pain
- seizures
- speech and swallowing problems
- shaking
- vision problems
MS has its most striking effect on motor and sensory neurons, which generally have long axons carrying information between the brain, spinal cord, and the rest of the body. Because these axons are longer, they have a greater need for the insulation myelin provides and are therefore most affected by its destruction.
What causes MS?
Nobody knows for sure what causes MS, but most scientists agree that it involves a combination of environmental and genetic factors. Different factors that are linked to MS include:
- Infection: Researchers believe that many autoimmune diseases are provoked by some kind of infection that may affect people differently who have a certain genetic makeup. The infection can trick your body's immune system into attacking your own tissues, even after the infection has gone.
- Family history: While scientisits have determined that there is no MS gene, research has shown that you are more likely to get MS if someone in your family has it.
So there is my little (or not so little) explanation of MS. Hope it makes sense!
Saturday, October 30, 2010
Day 17
Good news! First we did not spend the night at the hosptial last night. It turns out Chris was just having some sort of allergic reaction. Second, Chris is now two weeks post chemo and still has a full head of hair and his tastebuds. He seems to be handling this chemo pretty well, which is maybe a good sign for the second half of his treatmet (for anyone in the medical profession who is reading this, please don't make fun of us too much for being so naive).
We are gearing up for a big Halloween tomorrow. It is our first time that we are actually staying in and I am a little excited to be able to hand out candy to kids in the neighbourhood. We decided it would be best if Chris just watched from the top of the stairs. I don't care if I am being overly cautious. Children are full of germs. You just can't trust them.
We know we have been sending you lots of links to videos and articles, but we thought we would send you one more (and we promise to try and limit them in the future). Today we have a link to Chris' doctor, Dr. Harry Atkins. He is the hematologist and member of the bone marrow transplant team. Since we are at a learning hospital, we have actually only seen him a few times. We are often with other doctors, pharmacisits, nurse coordinators, research fellows, and sometimes people we aren't even sure work for the hospital.
It can sometimes be confusing because you can ask the same question to all of them and get a different answer from each person. And we often find ourselves recounting Chris' medical history over and over, and sometimes it takes a lot of strength to not tell them to just read Chris' chart because all of the information is in there. But we really do like all of he doctors that are at the hospital, especially Dr. Atkins.
The first time we met Dr. Atkins it was to determine if Chris was a candidate, and we spent over two hours with him. He went over every detail of Chris' condition and even marked down our wedding date in his file. When Chris had the bone pain last weekend, it was Dr. Atkins that was on-call and he was very concerned when we called him that night and made sure Chris was seen right away. He even called us the next morning when he went into the hospital to make sure Chris was doing better and that the emergency doctor had prescribed Chris enough pain medication. The most telltale sign is everytime we mention his name to anyone on staff at the hospital they all comment about how great he is and how much he cares about his patients.
So after my long love letter about Chris' doctor, here is a link to him being interviewed about this procedure.
http://www.insidermedicine.com/archives/Insidermedicine_in_the_Spotlight_-_Dr_Harry_Atkins_1436.aspx
We are gearing up for a big Halloween tomorrow. It is our first time that we are actually staying in and I am a little excited to be able to hand out candy to kids in the neighbourhood. We decided it would be best if Chris just watched from the top of the stairs. I don't care if I am being overly cautious. Children are full of germs. You just can't trust them.
We know we have been sending you lots of links to videos and articles, but we thought we would send you one more (and we promise to try and limit them in the future). Today we have a link to Chris' doctor, Dr. Harry Atkins. He is the hematologist and member of the bone marrow transplant team. Since we are at a learning hospital, we have actually only seen him a few times. We are often with other doctors, pharmacisits, nurse coordinators, research fellows, and sometimes people we aren't even sure work for the hospital.
It can sometimes be confusing because you can ask the same question to all of them and get a different answer from each person. And we often find ourselves recounting Chris' medical history over and over, and sometimes it takes a lot of strength to not tell them to just read Chris' chart because all of the information is in there. But we really do like all of he doctors that are at the hospital, especially Dr. Atkins.
The first time we met Dr. Atkins it was to determine if Chris was a candidate, and we spent over two hours with him. He went over every detail of Chris' condition and even marked down our wedding date in his file. When Chris had the bone pain last weekend, it was Dr. Atkins that was on-call and he was very concerned when we called him that night and made sure Chris was seen right away. He even called us the next morning when he went into the hospital to make sure Chris was doing better and that the emergency doctor had prescribed Chris enough pain medication. The most telltale sign is everytime we mention his name to anyone on staff at the hospital they all comment about how great he is and how much he cares about his patients.
So after my long love letter about Chris' doctor, here is a link to him being interviewed about this procedure.
http://www.insidermedicine.com/archives/Insidermedicine_in_the_Spotlight_-_Dr_Harry_Atkins_1436.aspx
Friday, October 29, 2010
Day 16 - The Start of Another Weekend (Oh no!)
It is now after hospital hours on a Friday, so of course Chris has just informed me that he is having a strange reaction. Chris appears to only have strange reactions after our main contact on the bone marrow transplant team goes home for the weekend. Now these strange reactions usually end up with us spending the night in the hospital, but I have high hopes we may be able to deal with this one.
Chris has broken out in a rash on both of his arms around where his IV was inserted. It was barely noticeable yesterday, but today it has become more red and travelled down his arm. Chris literally told me this at 6:00 pm. Sometimes I really want to hurt this guy.
So after a quick call to Nurse Laurie (my mom) she guessed it was just an allergic reaction (possibly to the antiseptic used to clean his arm) and let us know what to look out for. We also read that Cyclophosphamide can sometimes cause skin irritations, but we think it might be a little too delayed for it to be that. So we will be making a trip to Shoppers Drug Mart tonight, but it will be for Benadryl and not narcotics. This is a welcome improvement from last weekend.
Other than this latest development, Chris has been doing great. We both have been spending a lot of time reading other patients' blogs and actually watching a few videos on YouTube. In the United States we found a similar procedure being conducted in a clinical trial, called Halt MS. From what I can tell, the main difference is the chemotheraphy they use to knock out the immune system. In this trial they use a chemotherapy regimen called BEAM, which consists of four different drugs (carmustine, etoposide, cytarabine, and melphalan). A couple of the patients that went through this kept blogs or posted videos at the end of their treatment. Now both of these patients were a lot worse off than Chris, but there stories and improvement are pretty incredible!
This is a blog from one of the patients that did Halt MS. It is very similar to what Chris and I are doing. The patient, Jamie is now one year out from the procedure.
http://mymsjournal.blogspot.com/2010/09/its-been-1-year-today.html
This YouTube video is from the founder of a website called ActiveMsers (http://www.activemsers.org/). The video is pretty funny and really honest, and I definetly recommend watching it when you have a minute (or 15) free.
http://www.youtube.com/watch?v=6VTu--htcMI
Finally, we recieved another package in the mail today. We could get used to this :) Chris recieved a book that was autographed by the author (Jess Walter) and a message that said he was rooting for him. Honestly, all the support that we have been getting is great (and greatly appreciated). Speaking of which, we had two hits on our blog from the Phillipines today and now have over 1300 hits.
Chris has broken out in a rash on both of his arms around where his IV was inserted. It was barely noticeable yesterday, but today it has become more red and travelled down his arm. Chris literally told me this at 6:00 pm. Sometimes I really want to hurt this guy.
So after a quick call to Nurse Laurie (my mom) she guessed it was just an allergic reaction (possibly to the antiseptic used to clean his arm) and let us know what to look out for. We also read that Cyclophosphamide can sometimes cause skin irritations, but we think it might be a little too delayed for it to be that. So we will be making a trip to Shoppers Drug Mart tonight, but it will be for Benadryl and not narcotics. This is a welcome improvement from last weekend.
Other than this latest development, Chris has been doing great. We both have been spending a lot of time reading other patients' blogs and actually watching a few videos on YouTube. In the United States we found a similar procedure being conducted in a clinical trial, called Halt MS. From what I can tell, the main difference is the chemotheraphy they use to knock out the immune system. In this trial they use a chemotherapy regimen called BEAM, which consists of four different drugs (carmustine, etoposide, cytarabine, and melphalan). A couple of the patients that went through this kept blogs or posted videos at the end of their treatment. Now both of these patients were a lot worse off than Chris, but there stories and improvement are pretty incredible!
This is a blog from one of the patients that did Halt MS. It is very similar to what Chris and I are doing. The patient, Jamie is now one year out from the procedure.
http://mymsjournal.blogspot.com/2010/09/its-been-1-year-today.html
This YouTube video is from the founder of a website called ActiveMsers (http://www.activemsers.org/). The video is pretty funny and really honest, and I definetly recommend watching it when you have a minute (or 15) free.
http://www.youtube.com/watch?v=6VTu--htcMI
Finally, we recieved another package in the mail today. We could get used to this :) Chris recieved a book that was autographed by the author (Jess Walter) and a message that said he was rooting for him. Honestly, all the support that we have been getting is great (and greatly appreciated). Speaking of which, we had two hits on our blog from the Phillipines today and now have over 1300 hits.
Friday, October 22, 2010
Day 9 - First Checkup
We had Chris' first checkup today, and everything went really well. No fever or signs of infection, strong vitals and he even gained one pound (it must be all the ice cream I am making him eat!)
He had a bunch of bloodwork done, and they are going to call and have us come in if anything is out of the ordinary. If we don't hear anything, we are set to go in for his second checkup on Tuesday. They also told us to be really careful over the weekend, because Chris will be at a high risk for infection.
Unfortunately, Chris is starting to get bone pain from the neupogen in his back, which apparently is one of the most common areas. So he has back pain, no hair and a foggy memory. Sometimes I think I am living with my Chris 50 years from now.
Oh and one other quick thing! We have had a lot of people ask if we wanted to keep this blog private or if it was okay to share with other people. When we first talked about having this blog, one of the main reasons was the fact that we learned so much about this procedure and other MS treatments through other patients' blogs. And the one thing we have really noticed since telling people about Chris' multiple sclerosis is that everyone we tell is only one or two degrees of seperation from someone who has MS. We have no problem with people sharing this blog, and it's nice to know that we have a lot of people following and rooting for Chris.
He had a bunch of bloodwork done, and they are going to call and have us come in if anything is out of the ordinary. If we don't hear anything, we are set to go in for his second checkup on Tuesday. They also told us to be really careful over the weekend, because Chris will be at a high risk for infection.
Unfortunately, Chris is starting to get bone pain from the neupogen in his back, which apparently is one of the most common areas. So he has back pain, no hair and a foggy memory. Sometimes I think I am living with my Chris 50 years from now.
Oh and one other quick thing! We have had a lot of people ask if we wanted to keep this blog private or if it was okay to share with other people. When we first talked about having this blog, one of the main reasons was the fact that we learned so much about this procedure and other MS treatments through other patients' blogs. And the one thing we have really noticed since telling people about Chris' multiple sclerosis is that everyone we tell is only one or two degrees of seperation from someone who has MS. We have no problem with people sharing this blog, and it's nice to know that we have a lot of people following and rooting for Chris.
Monday, October 18, 2010
Day 5 - Start Neupogen
Today Chris started taking the neupogen injections to boost his stem cells before his stem cell collection next Wednesday. We will do this daily until then. The main side effects for this is bone pain, primarily in the long bones and the joints. This is caused by the stem cells overflowing from the bone marrow into the body. Luckily, this has yet to happen. In term of other side effects from the chemo and other drugs, Chris has been doing relatively well. He has some mild nausea, heartburn and a few headaches. However, what seems to be bugging him the most are the chronic hiccups he seems to have. At least 30 times today Chris has had to fight hiccup attacks that DO NOT want to go away. We have been brainstorming different remedies: holding your breath, controlling your breathing, plugging your ears (don't laugh, apparently it is reccomended by doctors!) and Chris even tried lying his head down on kitchen counter in the dark (the surprising cure).
We have also been fighting boredom a little bit (thank goodness it is hockey season!) However, Chris decided that a fun thing we could do today would be to work on his mohawk. He decided he wanted it shorter. The pictures we are posting are the result. Let's just hope this boredom doesn't last long because I can only imagine what else he is planning on doing to his head.
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