Quick update: Ray had his 2 chemo shots this am and tolerated them well, no nausea so far today! He also got his procrit shot, also in the stomach area...so that's 3 in the stomach this am. The dr is continuing the procrit hormone shots despite the poor response to date (week 5) and the blood clot side effects.
Blood Clot Update: Ray was told by the nurse this am that she had spoken to the dr and he said he'd talked to the radiologist finally and he had found nothing wrong and no blood clot and could go home and no further follow up was needed. However, as luck (?) would have it, he ran into the good Dr on his way out (Dr was coming in for the day) and they engaged in a replay of the nurse's comments. The Dr. denied having had any conversation with the nurse at all and told Ray he could not leave until he talked with the radiologist, whom he called immediately. Turns out Ray DOES have a blood clot in both his leg and arm!! (Yes, you can get them in your arm!!) The good news is these are not the true life threatening deep vein clots. They are called "surface vein thrombophlebitis" as the clots are in the surface veins close to the surface of the skin. He now has to give himself 2 more injections/day for a month with another blood thinning medication to resolve these and prevent more or worse blood clots. Never at a loss for humor, Ray just joked about getting shot so many times now in so many places that he's fast running out of room for new shots! All of you who know Ray know he will try to deal with his journey with humor as much as possible. We are thankful the blood clots are not in deep veins that could be life threatening and requiring further hospitalization. It could be much worse! As for the nurse and her 'discussion' she had with the doctor, I'd love to be a fly on the wall for that one! I'm sure just the first of many missteps that can be made during this journey, as we're all only human. We just pray one of the mistakes that may be made won't be life threatening!! He is in God's hands and care and we have to trust that.
I promised more information on Ray's disease, how we got to this point, and what the BMT procedure is that lies ahead....look for another posting later this week on that. I won't plan on updating each of his chemo days this week unless there's a significant reaction or update. More to come as we get updates on his counts and when we find out if any of his siblings are a donor match. Each sibling has a 25% chance of being a match, so that's pretty good odds! We're hopeful as the sibling donor provides the best success rate! If not, we would aggressively search the nationwide bone marrow donor bank ..but hoping it won't come to that. Thank you so much to all his brothers and sisters for being so quick to get tested and so eager to help Ray in any way. This is awesome and he will owe his life to one of them in the months to come! What a blessing someone will get to be to Ray and our family!
Have a great week and until next time....we love you all, Teri
Tuesday, August 30, 2011
End of Day 1 of Chemo - a new challenge and overview of Myelodysplasia
Family and Friends,
This morning Ray stated his day off with his first chemo injection (in his stomach - ouch!). He took his Zophran (anit-nausea pill) an hour before the shot and had only minimal nausea about 3 hours after the shot. He was able to eat a full plate of leftover homemade spaghetti (Mom's recipe...Ray's favorite!!) for lunch and then some KFC for dinner, so he ate pretty well today. It was good to see him eat so well today, as he's not had much of an appetite lately and has lost about 10 pds already since his journey began these last few months. He experienced some more severe nausea again this evening for several hours, popped another Zophran, and waited for it to pass. We're hoping tomorrow's shot and the rest of the week won't increase the nausea, as he is really wanting to continue working as much as possible before the bone marrow transplant.
Obstacle #1: Of course, you never know what to expect with this new journey, the new medications, how your body will react, etc....first off, he tried to pick up his Zophran anti-nausea pills yesterday to have them to take this am before the shot, and the pharmacist informed him the insurance company had denied paying for the prescription. He then informed Ray they were 'quite expensive'...as in $250 for 30 pills expensive!! Ray told him he couldn't afford them without the insurance, so the pharmacist said he'd contact the doctor to make a call into the insurance company to make them aware that they were 'necessary' in the managed care while going through chemo. Interesting they approved the chemo drug but not the drug to help one withstand the chemo! He did get this resolved with the insurance company late this afternoon, but not in time for his shot this am. As luck (?) would have it, Ray came across a bottle of unused Zophran from when he had his food poisoning bout several months ago (which actually is where his journey truly first began and his low blood counts were noticed to begin with!), so he was able to use those pills to get through today with minimal discomfort. God always has a plan and provides!!
Obstacle #2: Ray noticed late last week and over the weekend that his left shin and ankle were swelling and very sore and tender. We initially thought he must have hit his leg on something....he bruises easily now...but we noticed no bruise and he recalled no incident. The lower side of the shin and ankle became very hard and hot to touch and by this am, was spreading up his leg. He asked the nurse who administered his chemo shot about this and she sent him back to his oncologist, where he proceeded to wait for 2 hours to be 'squeezed in' amongst the scheduled cancer patients. The doctor examined him and said he needed to 'rule out' a blood clot and sent us to a totally different hospital several hours later to have a Doppler test (sonogram) on his leg to detect blood clots. (Also informed us that this blood disease puts Ray at a higher risk for blood clots in general and also the procrit shots have a severe side effect of blood clots, although more rare.) The technician told us he would send the test results to his radiologist, who would come in and talk to us. However, he returned saying the radiologist "found something' and would be calling Ray's oncologist with the results, who would in turn, call us. We asked if he could just come in and tell us directly, but he refused. Bizarre. Ray's dr never did get a call from the radiologist with the results, but assured us he would track it down first thing in the am. So, bottom line is that we should have these results in the morning when we drive downtown Dallas to get his second chemo shot at 7:45am. My Mom has had 3 blood clots in her leg and my brother one, so I'm fairly well versed in the look and feel and general symptoms of blood cots. However, I didn't put the symptoms together for a blood clot. It is alarming to us that if he does, in fact, have a blood clot, which can break loose and travel to your heart, lungs, brain, etc that can basically be life-threatening, that he was allowed to return home with no restrictions whatsoever. That leads me to believe perhaps he does not have a blood clot....I guess we will find out in the morning. In the meantime, he is keeping his leg elevated and doing minimal walking, 'just in case'. As a side note, Ray also has a similar hard knot in his left arm just inside/above his elbow, which is also very swollen and sore. I think the combination of both of these similar swellings also threw us off the track of a blood clot...I've never heard of a blood clot in one's arm. We thought perhaps it was a reaction to the procrit and wondered if these were lymph nodes or something? (The Dr. had no comment/idea on the arm swelling...said it was non related and definitely not a blood clot.) I guess we're to dismiss that concern???
Some details about the chemo drug and his regimen: Ray is getting the drug Vidaza, which basically is used to try and stop the growth of immature, 'useless' red and white blood cells. These immature cells are called 'blasts' and basically never mature into functioning cells. They crowd out the healthy, mature cells (resulting in low blood counts) and can end up resulting in full blown, acute leukemia. These 'blasts' are also referred to as leukemia cells. Ray currently has 4-5% blasts; 20% = acute leukemia. The question is how fast are the blasts increasing? Ray's particular kind of myelodysplasia, or MDS, is a rather aggressive form and one that moves quickly to leukemia, which is why the urgency in the BMT. The course of Ray's chemo regimen will be one week on, 3 weeks off. So this week, he will have shots Mon - Fri, then take 3 weeks off, then repeat the cycle. We don't know how long the cycle will last; it all depends on his bone marrow's responsiveness. We have been told there is a 60-70% positive response rate from this drug, but it is short lived. It is not a cure. The doctor has advised us also that initially we can expect Ray's blood counts to go down even lower than they are currently; however, after 3-4 months max they should start responding and improving. We are also praying they won't go too low during this time and that he will be healthy to sing at Ashley's wedding and walk her down the aisle on Oct 14th! She just mailed the invitations, so we can't change the date now! :) The 'plan', per the oncologist/hematologist (still hard to get used to the idea that Ray has an 'oncologist', as if everyone has one of those!), is to get Ray's blood counts up and eliminate as many blasts as possible, in order to prepare him for the most successful outcome possible with a bone marrow transplant (BMT), which can result in full cure. Of course, that is what we are paying for and asking you all to pray for also. The BMT is the only cure for Ray's blood disease, which is also commonly referred to as "pre-leukemia". I will spend more time tomorrow or the next day explaining more details about Ray's disease itself (is this cancer or not?), how we discovered he had this, his bone marrow biopsy results, the 6 of his 7 wonderfully supportive siblings (1 sister is in remission herself from recent lymphoma and is not a candidate) that are currently undergoing testing to determine if they might be a bone marrow donor match and give Ray the ultimate gift of life, and the BMT procedure itself that Ray is facing as soon as he is 'healthy' enough to go through it. You should know that the BMT procedure itself is very risky and scary and there are many side effects and potential complications and long term health risks associated with this; however, as I said, it is the only cure...and so Ray begins his journey that started with a case of food poisoning, chest pains requiring a second angiogram to rule out another heart attack in the waiting or failed stent from his heart attack last Thanksgiving (turns out severely low red blood cells causes chest pain!), low blood counts revealed in routine blood work, a blood transfusion, a month's worth of procrit hormone shots (also in his stomach!) with no response to date, and now the chemo. Ray's journey will end with the BMT and we believe, a cure.
I will post an update tomorrow on his 2nd day of chemo and the results of his blood clot tests. Please continue to keep Ray in your prayers and know that we covet your prayers and love and friendship more than words can say. Thank you so much for the words of encouragement and support many of you have already sent Ray via email, text, phone calls, FB, or posting a comment here on this blog. He has read every one of them and each one has helped arm him with the right spirit to fight this battle ahead of him. Knowing he has an army of prayer warriors in friends and family that truly care and love him probably helps him as much as the chemo or other drugs to help fight this disease and its progression to acute leukemia. Thank you so much! We love you all!
More to come tomorrow on his blood clot results and Day 2 of Chemo....
Love to all, Teri
This morning Ray stated his day off with his first chemo injection (in his stomach - ouch!). He took his Zophran (anit-nausea pill) an hour before the shot and had only minimal nausea about 3 hours after the shot. He was able to eat a full plate of leftover homemade spaghetti (Mom's recipe...Ray's favorite!!) for lunch and then some KFC for dinner, so he ate pretty well today. It was good to see him eat so well today, as he's not had much of an appetite lately and has lost about 10 pds already since his journey began these last few months. He experienced some more severe nausea again this evening for several hours, popped another Zophran, and waited for it to pass. We're hoping tomorrow's shot and the rest of the week won't increase the nausea, as he is really wanting to continue working as much as possible before the bone marrow transplant.
Obstacle #1: Of course, you never know what to expect with this new journey, the new medications, how your body will react, etc....first off, he tried to pick up his Zophran anti-nausea pills yesterday to have them to take this am before the shot, and the pharmacist informed him the insurance company had denied paying for the prescription. He then informed Ray they were 'quite expensive'...as in $250 for 30 pills expensive!! Ray told him he couldn't afford them without the insurance, so the pharmacist said he'd contact the doctor to make a call into the insurance company to make them aware that they were 'necessary' in the managed care while going through chemo. Interesting they approved the chemo drug but not the drug to help one withstand the chemo! He did get this resolved with the insurance company late this afternoon, but not in time for his shot this am. As luck (?) would have it, Ray came across a bottle of unused Zophran from when he had his food poisoning bout several months ago (which actually is where his journey truly first began and his low blood counts were noticed to begin with!), so he was able to use those pills to get through today with minimal discomfort. God always has a plan and provides!!
Obstacle #2: Ray noticed late last week and over the weekend that his left shin and ankle were swelling and very sore and tender. We initially thought he must have hit his leg on something....he bruises easily now...but we noticed no bruise and he recalled no incident. The lower side of the shin and ankle became very hard and hot to touch and by this am, was spreading up his leg. He asked the nurse who administered his chemo shot about this and she sent him back to his oncologist, where he proceeded to wait for 2 hours to be 'squeezed in' amongst the scheduled cancer patients. The doctor examined him and said he needed to 'rule out' a blood clot and sent us to a totally different hospital several hours later to have a Doppler test (sonogram) on his leg to detect blood clots. (Also informed us that this blood disease puts Ray at a higher risk for blood clots in general and also the procrit shots have a severe side effect of blood clots, although more rare.) The technician told us he would send the test results to his radiologist, who would come in and talk to us. However, he returned saying the radiologist "found something' and would be calling Ray's oncologist with the results, who would in turn, call us. We asked if he could just come in and tell us directly, but he refused. Bizarre. Ray's dr never did get a call from the radiologist with the results, but assured us he would track it down first thing in the am. So, bottom line is that we should have these results in the morning when we drive downtown Dallas to get his second chemo shot at 7:45am. My Mom has had 3 blood clots in her leg and my brother one, so I'm fairly well versed in the look and feel and general symptoms of blood cots. However, I didn't put the symptoms together for a blood clot. It is alarming to us that if he does, in fact, have a blood clot, which can break loose and travel to your heart, lungs, brain, etc that can basically be life-threatening, that he was allowed to return home with no restrictions whatsoever. That leads me to believe perhaps he does not have a blood clot....I guess we will find out in the morning. In the meantime, he is keeping his leg elevated and doing minimal walking, 'just in case'. As a side note, Ray also has a similar hard knot in his left arm just inside/above his elbow, which is also very swollen and sore. I think the combination of both of these similar swellings also threw us off the track of a blood clot...I've never heard of a blood clot in one's arm. We thought perhaps it was a reaction to the procrit and wondered if these were lymph nodes or something? (The Dr. had no comment/idea on the arm swelling...said it was non related and definitely not a blood clot.) I guess we're to dismiss that concern???
Some details about the chemo drug and his regimen: Ray is getting the drug Vidaza, which basically is used to try and stop the growth of immature, 'useless' red and white blood cells. These immature cells are called 'blasts' and basically never mature into functioning cells. They crowd out the healthy, mature cells (resulting in low blood counts) and can end up resulting in full blown, acute leukemia. These 'blasts' are also referred to as leukemia cells. Ray currently has 4-5% blasts; 20% = acute leukemia. The question is how fast are the blasts increasing? Ray's particular kind of myelodysplasia, or MDS, is a rather aggressive form and one that moves quickly to leukemia, which is why the urgency in the BMT. The course of Ray's chemo regimen will be one week on, 3 weeks off. So this week, he will have shots Mon - Fri, then take 3 weeks off, then repeat the cycle. We don't know how long the cycle will last; it all depends on his bone marrow's responsiveness. We have been told there is a 60-70% positive response rate from this drug, but it is short lived. It is not a cure. The doctor has advised us also that initially we can expect Ray's blood counts to go down even lower than they are currently; however, after 3-4 months max they should start responding and improving. We are also praying they won't go too low during this time and that he will be healthy to sing at Ashley's wedding and walk her down the aisle on Oct 14th! She just mailed the invitations, so we can't change the date now! :) The 'plan', per the oncologist/hematologist (still hard to get used to the idea that Ray has an 'oncologist', as if everyone has one of those!), is to get Ray's blood counts up and eliminate as many blasts as possible, in order to prepare him for the most successful outcome possible with a bone marrow transplant (BMT), which can result in full cure. Of course, that is what we are paying for and asking you all to pray for also. The BMT is the only cure for Ray's blood disease, which is also commonly referred to as "pre-leukemia". I will spend more time tomorrow or the next day explaining more details about Ray's disease itself (is this cancer or not?), how we discovered he had this, his bone marrow biopsy results, the 6 of his 7 wonderfully supportive siblings (1 sister is in remission herself from recent lymphoma and is not a candidate) that are currently undergoing testing to determine if they might be a bone marrow donor match and give Ray the ultimate gift of life, and the BMT procedure itself that Ray is facing as soon as he is 'healthy' enough to go through it. You should know that the BMT procedure itself is very risky and scary and there are many side effects and potential complications and long term health risks associated with this; however, as I said, it is the only cure...and so Ray begins his journey that started with a case of food poisoning, chest pains requiring a second angiogram to rule out another heart attack in the waiting or failed stent from his heart attack last Thanksgiving (turns out severely low red blood cells causes chest pain!), low blood counts revealed in routine blood work, a blood transfusion, a month's worth of procrit hormone shots (also in his stomach!) with no response to date, and now the chemo. Ray's journey will end with the BMT and we believe, a cure.
I will post an update tomorrow on his 2nd day of chemo and the results of his blood clot tests. Please continue to keep Ray in your prayers and know that we covet your prayers and love and friendship more than words can say. Thank you so much for the words of encouragement and support many of you have already sent Ray via email, text, phone calls, FB, or posting a comment here on this blog. He has read every one of them and each one has helped arm him with the right spirit to fight this battle ahead of him. Knowing he has an army of prayer warriors in friends and family that truly care and love him probably helps him as much as the chemo or other drugs to help fight this disease and its progression to acute leukemia. Thank you so much! We love you all!
More to come tomorrow on his blood clot results and Day 2 of Chemo....
Love to all, Teri
Sunday, August 28, 2011
Ray's First Day of Chemotherapy
Ray is having his first chemotherapy "shot" tomorrow morning at 8am. He will also continue with his Procrit hormone shot that he has been taking once a week for a month now with little response on his blood counts. This particular type of chemo is known for making his bone marrow start producing higher counts of both red and white cells. There is a 60-70% response rate with this drug. The "plan" is to get Ray's blood counts higher and kill his "blasts" (leukemia cells) so that he will be in optimal condition for his bone marrow transplant. The Dr. has said that this chemo may take 3-4 months to start working and will make his counts go down initially, so he will have to be watched very carefully. It will make him even more tired and short of breath than he already is, and may make him very nauseas (the Dr. has prescribed medicine for this side effect). It should not, however, make his hair fall out. Please pray for minimal side effects and great results. He will be taking this chemo every day this week, Monday- Friday, then 3 weeks off and then he will repeat this cycle until we have the results we need.
More to come this week.......I will post an overview of his illness, Myelodysplasia, for those of you who may not be aware of how we got "here" and what exactly he and his family are facing. Thank you for your love and support and most of all your prayers. You can always reach Ray at 972-400-5621 or FaceBook. He would love to hear from everyone!
More to come this week.......I will post an overview of his illness, Myelodysplasia, for those of you who may not be aware of how we got "here" and what exactly he and his family are facing. Thank you for your love and support and most of all your prayers. You can always reach Ray at 972-400-5621 or FaceBook. He would love to hear from everyone!
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