Post by Valerie:
As we near Thanksgiving there are many blessing for which we will be giving thanks! Presently, Dad is at home. He was released from Providence on 11/3 after a week stay. The primary diagnosis they concluded was Cryptogenic Organizing Pneumonitis (COP). This explains the significant respiratory problems he was having for about a month. The treatment for COP is rather aggressive with a recommended 24 weeks on steroids and then a tapering off at that point. Anything too soon could mean that it continues to attack or obstruct the alveoli. The symptoms of this disease mimic pneumonia so, looking back, we realize that this was likely present for awhile. However, there is a blessing here in that we have a diagnosis and a treatment!!!
The main setback that Dad has faced since being faced with COP is that he doesn't have the immunity for it. The pulmonologists have said that a high-grade fever is not typically a symptom and Dad has reached up to 104. The solution needed in this case was an infusion to boost his immune system. T took Dad to Dallas on Friday so that he could receive that and hopefully get stronger!! Dr Pineiro indicated that he could see results anywhere from a few days to a few weeks. This morning he was running a fever again but he said that he is gaining a touch of strength.
We have been blessed with each other and with a good prognosis!!! Dad will continue to fight with all he has because there is alot to fight for. I am thankful for him, thankful for Dr Pineiro and his guidance, thankful for all medical caregivers who are invested in quality care, thankful for research that continues to allow better outcomes, and thankful for everyone who has given us a hug, a kind word, a prayer, or a word of encouragement!
From the whole family - Larry, Paula, Val, Kaylee, Tim, Kim, Harrison
**Please keep my friend, Leslie, in your prayers as she and her sister Cristy lost their Dad last week. A Dad is a precious thing to a daughter and they need warm thoughts!!!
Sunday, November 13, 2011
Sunday, October 30, 2011
Life After Transplant
A quick update - since it's been a while...
Since having the stem cell transplant, life has had its ups and downs for dad. Some days are great, and some are far from it. We were pleasantly surprised when he started getting out and about, working, going to sporting events, etc pretty quickly after being released. Also, blood tests and other tests have shown that the transplant has done what it was supposed to do and has the cancer presence moving in the right direction. There have been a few set backs, though.
A couple of weeks ago, dad was admitted at Providence for about 6 days with pneumonia-like symptoms. He had breathing trouble pretty consistently - and the docs determined that it wasn't pneumonia but a disorder caused by the transplant that causes similar symptoms. After being released, things didn't progress and get better like they should've. This past Thursday night, dad was admitted again with a consistently high fever (above 103) and significant breathing problems (no relation to the Rangers heartbreaking loss in game 6 that same night).
They've run a lot more tests since he's been admitted this time and have found a couple of issues - but still waiting to find out exactly what is causing the shortness of breath and very easy fatigue. They think it's some type of infection and have taken some tissue from his lungs to test. Aside from that, they discovered that he's got a vocal cord disorder, where the vocal cords do not expand the way they should and occasionally spasm and seriously restrict air flow. It's a treatable problem, but also a scary one.
We will post another update when we know more about what is going on and what is discovered and done for the lung and infeciton problems. In the meantime it looks like he'll be in the hospital for a little while - he's been doing worse since being admitted, but they have controlled the fever. He's in room 486 at Providence. Hopefully the next update is some positive news. As always, thanks a ton for the support and prayers.
Since having the stem cell transplant, life has had its ups and downs for dad. Some days are great, and some are far from it. We were pleasantly surprised when he started getting out and about, working, going to sporting events, etc pretty quickly after being released. Also, blood tests and other tests have shown that the transplant has done what it was supposed to do and has the cancer presence moving in the right direction. There have been a few set backs, though.
A couple of weeks ago, dad was admitted at Providence for about 6 days with pneumonia-like symptoms. He had breathing trouble pretty consistently - and the docs determined that it wasn't pneumonia but a disorder caused by the transplant that causes similar symptoms. After being released, things didn't progress and get better like they should've. This past Thursday night, dad was admitted again with a consistently high fever (above 103) and significant breathing problems (no relation to the Rangers heartbreaking loss in game 6 that same night).
They've run a lot more tests since he's been admitted this time and have found a couple of issues - but still waiting to find out exactly what is causing the shortness of breath and very easy fatigue. They think it's some type of infection and have taken some tissue from his lungs to test. Aside from that, they discovered that he's got a vocal cord disorder, where the vocal cords do not expand the way they should and occasionally spasm and seriously restrict air flow. It's a treatable problem, but also a scary one.
We will post another update when we know more about what is going on and what is discovered and done for the lung and infeciton problems. In the meantime it looks like he'll be in the hospital for a little while - he's been doing worse since being admitted, but they have controlled the fever. He's in room 486 at Providence. Hopefully the next update is some positive news. As always, thanks a ton for the support and prayers.
Sunday, August 7, 2011
Homecoming!
After 6 days admitted in the hospital, and a total of 4 weeks in Dallas, on Tuesday of this week dad's blood counts and numbers started to rebound and he was released and allowed to come home. We don't know yet how "successful" the transplant was in terms of remission - time will answer that question... and we will hopefully get some test work done and results over the coming weeks that will give us an indication. In the meantime, we're incredibly proud of dad to have handled this process as well as he did - and incredibly happy that he was able to come back home. Also, due to good timing (Harrison not yet having received vaccinations) he was able to meet his grandson right when he got home!
The recovery is still going to take a lot of time and a lot of continued doctor's visits, but this picture represents a turning point in a very long journey...... thanks to all for the continued thoughts and prayers!!! They've meant a lot to our family.
The recovery is still going to take a lot of time and a lot of continued doctor's visits, but this picture represents a turning point in a very long journey...... thanks to all for the continued thoughts and prayers!!! They've meant a lot to our family.
Thursday, July 28, 2011
Happy Birthday
Post by Valerie:
Today is Dad's birthday. Yesterday he was admitted into Roberts Hospital, which is a part of Baylor University Medical Center. It is located next door to the Cancer Center. His room area is with several other cancer patients who have undergone the STC treatment. The admission was due to a variety of reasons: low blood pressure, low blood counts, and difficulty holding food and liquids.
Tim, Paula, and I are here with him today as we honor him on his 58th birthday :-) He's looking well today and is happy to have visitors!! His white blood cell count is still really low and he is receiving Neupogen injections to continue to boost those. He received platelets today also. Dad says he is feeling better and is able to hold food down which gives him some more energy. He is running a fever today so keep him in your prayers today.
HAPPY BIRTHDAY, DAD!! Stay strong!
Today is Dad's birthday. Yesterday he was admitted into Roberts Hospital, which is a part of Baylor University Medical Center. It is located next door to the Cancer Center. His room area is with several other cancer patients who have undergone the STC treatment. The admission was due to a variety of reasons: low blood pressure, low blood counts, and difficulty holding food and liquids.
Tim, Paula, and I are here with him today as we honor him on his 58th birthday :-) He's looking well today and is happy to have visitors!! His white blood cell count is still really low and he is receiving Neupogen injections to continue to boost those. He received platelets today also. Dad says he is feeling better and is able to hold food down which gives him some more energy. He is running a fever today so keep him in your prayers today.
HAPPY BIRTHDAY, DAD!! Stay strong!
Monday, July 25, 2011
LWP and Harrison
Post by Val and Tim:
This has been a big week for our family!! Dad's STC occured on Monday and Tuesday. For the rest of the week he went in to the clinic everyday for monitoring, hydration, and tests. They are watching counts for white blood cells, red blood cells, and platelets. The white blood cell count drops significantly with the chemo treatment and that is what we want. The other two have to be watched closely and if there is a drop too low then they are prepared for blood transfusions.
Each day, the numbers were doing what they are expected to do. The primary difficulties for Dad have been nausea and vomiting. He has been given a variety of medications to help with that but it is part of the process that sometimes just can't be avoided. Dad takes several antibiotics to prevent any type of infection, as that would be a big threat we do not want to face.
The past few days have been difficult for him. Tomorrow he will be going through his first transfusion and we are hoping that he will start to feel better afterwards!!!
Yesterday was the birth of Dad's first grandchild! Harrison Riley Payne was born in Waco, TX at 3:03pm. Tim and Kim are ecstatic and Harrison is such a sweet baby. He is so content experiencing the world and the love of his family. Dad and Paula were able to follow the birth events through the blessing of technology. Texts, phone calls, and video were exchanged. Of course we knew the possibility of Harrison's arrival and Dad's treatment would likely come at the same time so we were prepared for how to keep them as informed as the situation would allow!!!!
Welcome to the world, Harrison:
Dad, we love you!!!!!
This has been a big week for our family!! Dad's STC occured on Monday and Tuesday. For the rest of the week he went in to the clinic everyday for monitoring, hydration, and tests. They are watching counts for white blood cells, red blood cells, and platelets. The white blood cell count drops significantly with the chemo treatment and that is what we want. The other two have to be watched closely and if there is a drop too low then they are prepared for blood transfusions.
Each day, the numbers were doing what they are expected to do. The primary difficulties for Dad have been nausea and vomiting. He has been given a variety of medications to help with that but it is part of the process that sometimes just can't be avoided. Dad takes several antibiotics to prevent any type of infection, as that would be a big threat we do not want to face.
The past few days have been difficult for him. Tomorrow he will be going through his first transfusion and we are hoping that he will start to feel better afterwards!!!
Yesterday was the birth of Dad's first grandchild! Harrison Riley Payne was born in Waco, TX at 3:03pm. Tim and Kim are ecstatic and Harrison is such a sweet baby. He is so content experiencing the world and the love of his family. Dad and Paula were able to follow the birth events through the blessing of technology. Texts, phone calls, and video were exchanged. Of course we knew the possibility of Harrison's arrival and Dad's treatment would likely come at the same time so we were prepared for how to keep them as informed as the situation would allow!!!!
Welcome to the world, Harrison:
Dad, we love you!!!!!
Wednesday, July 20, 2011
Positive Progress
Post by Tim:
I had the opportunity to get away for a few hours and head up to Dallas to visit Dad yesterday. I couldn't have enjoyed the visit more, and it was somewhat of a relief for me since I can't get up there as much as I'd like to.
He received the transplant on Monday morning and Tuesday morning, and the chemo from the weekend has had a chance to catch up to him and start taking effect. Even though he's seeing the expected side effects - nausea, unable to eat, low blood counts, etc - I was pleasantly surprised at his alertness and condition. He was actually able to chat for a while and eat a little bit while I was there, and had a real positive attitude about everything. Based on what I've heard and read (and even based on talking to him the previous day), I really didn't expect to be able to get much out of him... especially considering what he's been through and the amount of medication he's on (probably has enough stock to start up a small pharmacy). I know we're not done yet and maybe haven't even hit the lowest blood counts yet - but I'd definitely say he's doing as well as could be expected.
Hoping that things continue to progress the way they are and should. If all goes well, hopefully he'll get to see his grandson right after he's born via the technology they call the "skype", or however you spell it - and then meet him sooner than later.
Aside from that, his schedule now is daily monitoring and IV fluids at least until the end of the month. Thanks everyone for the messages, e-mails, phone calls, facebooks, and any other form of communication that you may have used. Dad really appreciates it - and so do we. Please continue to pray for recovery and a good end result, and know that we all feel blessed and grateful for the support we're getting. We will continue to keep you posted.
I had the opportunity to get away for a few hours and head up to Dallas to visit Dad yesterday. I couldn't have enjoyed the visit more, and it was somewhat of a relief for me since I can't get up there as much as I'd like to.
He received the transplant on Monday morning and Tuesday morning, and the chemo from the weekend has had a chance to catch up to him and start taking effect. Even though he's seeing the expected side effects - nausea, unable to eat, low blood counts, etc - I was pleasantly surprised at his alertness and condition. He was actually able to chat for a while and eat a little bit while I was there, and had a real positive attitude about everything. Based on what I've heard and read (and even based on talking to him the previous day), I really didn't expect to be able to get much out of him... especially considering what he's been through and the amount of medication he's on (probably has enough stock to start up a small pharmacy). I know we're not done yet and maybe haven't even hit the lowest blood counts yet - but I'd definitely say he's doing as well as could be expected.
Hoping that things continue to progress the way they are and should. If all goes well, hopefully he'll get to see his grandson right after he's born via the technology they call the "skype", or however you spell it - and then meet him sooner than later.
Aside from that, his schedule now is daily monitoring and IV fluids at least until the end of the month. Thanks everyone for the messages, e-mails, phone calls, facebooks, and any other form of communication that you may have used. Dad really appreciates it - and so do we. Please continue to pray for recovery and a good end result, and know that we all feel blessed and grateful for the support we're getting. We will continue to keep you posted.
Friday, July 15, 2011
Collection complete
Post by Tim:
Dad's collection process is complete as of today - they just hit the target number on the last day. He didn't get a break like we were hoping, but it's done. He's feeling pretty good - the collection part hasn't been too bad, just tiring. Tomorrow is a big day - he will be getting high-dose melphalan (chemo) for a good part of the day that will kill as many cancer cells as possible (that will also unfortunately kill healthy blood cells as well). In the meantime they're freezing the stem cells collected and will start putting them back in on Monday - which is the official transplant day, or day 0 as they call it. Some people call it a "re-birthday". The following weeks he'll have daily monitoring, IV's and transfusions as needed. More info to come this weekend or next week. As always, we all appreciate the thoughts and prayers you've been sending this way.
Dad's collection process is complete as of today - they just hit the target number on the last day. He didn't get a break like we were hoping, but it's done. He's feeling pretty good - the collection part hasn't been too bad, just tiring. Tomorrow is a big day - he will be getting high-dose melphalan (chemo) for a good part of the day that will kill as many cancer cells as possible (that will also unfortunately kill healthy blood cells as well). In the meantime they're freezing the stem cells collected and will start putting them back in on Monday - which is the official transplant day, or day 0 as they call it. Some people call it a "re-birthday". The following weeks he'll have daily monitoring, IV's and transfusions as needed. More info to come this weekend or next week. As always, we all appreciate the thoughts and prayers you've been sending this way.
Tuesday, July 12, 2011
Week Two - Tuesday
Post by Valerie:
DAY SIX - On Monday, Dad had his first "collection" day. This process is called Apheresis and is similar to dialysis. For the last 5 days he had been receiving the Neupogen injections to stimulate production of new stem cells. Today, he was connected to a machine that removes blood and selectively collects the stem cells. Once the stem cells are collected, the blood is returned to him. His pheresis session took 5 hours. He was then allowed to go back to the apartment to rest and got a phone call in the evening of the results. The nurse indicated to him that they had only been able to collect 15% of what they needed from his blood. This was much less than what they look for. Typically they expect to get everything they need in 1-2 sessions. Hopes for a better tomorrow!!!
DAY SEVEN - Today, the second pheresis session continued as planned. This one also took 5 hours. Dad said that all of the patients undergoing the Stem Cell Transplant (SCT) are scheduled for these sessions together. The same group of people came in hooked up to their machines, all hoping for the best (primarily hoping it's the last day). That was an interesting component, I thought. Following the collection, he received a phone call indicating only a 10% collection of what they needed for the day. His total is now at 25%. They now will make a modification to his course by giving him a different type of injection tomorrow to boost the production of his stem cells even more. This is called Mozobil. The side effects are more severe but it's necessary to obtain the optimal number of stem cells to support rapid bone marrow recovery and blood cell production with the SCT. Tomorrow he will continue the pheresis and get the Mozobil boost injections. More hoping for better results!!!
One week is down. The schedule includes the big bout of chemo this weekend and the transplant day being Monday. We ask again that you send prayers and well wishes this way. Every bit of support helps as we move along.
DAY SIX - On Monday, Dad had his first "collection" day. This process is called Apheresis and is similar to dialysis. For the last 5 days he had been receiving the Neupogen injections to stimulate production of new stem cells. Today, he was connected to a machine that removes blood and selectively collects the stem cells. Once the stem cells are collected, the blood is returned to him. His pheresis session took 5 hours. He was then allowed to go back to the apartment to rest and got a phone call in the evening of the results. The nurse indicated to him that they had only been able to collect 15% of what they needed from his blood. This was much less than what they look for. Typically they expect to get everything they need in 1-2 sessions. Hopes for a better tomorrow!!!
DAY SEVEN - Today, the second pheresis session continued as planned. This one also took 5 hours. Dad said that all of the patients undergoing the Stem Cell Transplant (SCT) are scheduled for these sessions together. The same group of people came in hooked up to their machines, all hoping for the best (primarily hoping it's the last day). That was an interesting component, I thought. Following the collection, he received a phone call indicating only a 10% collection of what they needed for the day. His total is now at 25%. They now will make a modification to his course by giving him a different type of injection tomorrow to boost the production of his stem cells even more. This is called Mozobil. The side effects are more severe but it's necessary to obtain the optimal number of stem cells to support rapid bone marrow recovery and blood cell production with the SCT. Tomorrow he will continue the pheresis and get the Mozobil boost injections. More hoping for better results!!!
One week is down. The schedule includes the big bout of chemo this weekend and the transplant day being Monday. We ask again that you send prayers and well wishes this way. Every bit of support helps as we move along.
Sunday, July 10, 2011
Week One
Post by Valerie:
Dad arrived in Dallas and began his first week here on Wednesday.
DAY ONE - With day one, he had a NeoStar Triple Numen central line surgically placed in his right shoulder area. His blood was thinner than normal from a variety of influencing factors. That caused some excessive bleeding. Late that evening he was allowed to leave as an outpatient and checked into the apartment that is being provided. It is a small efficiency apartment located a few blocks from the Baylor Cancer Center.
DAY TWO - Dad began to get his first Neupogen injections. This will help boost the production of white blood cells. On this day, he and Paula also attended an informational class that went through plan, schedule, and expectations. They also headed to the grocery store to stock up on food and supplies needed to live here for a few weeks. At the end of the day, Dad said he was pretty worn out.
DAY THREE - The second set of Neupogen injections were given in the morning. Kaylee and I left Waco to head north. We stopped in West for kolaches and breakfast with MawMaw and the Friday morning coffee group. The drive here was quick and painless. We arrived before lunch and were able to have a full day of family time. Since Dad had already finished his appointment for the day we had some freedom. We were able to go out for lunch, a movie, and some shopping.
DAY FOUR AND FIVE - Dad went in for his Neupogen injections. Since it was the weekend, the place was quiet and mostly empty. We were in and out fairly quick. After the appointments, we took advantage of free time again while we had it.
This coming week is reserved for collection of blood and stem cells. Monday, Dad goes in at 7 a.m. and they will begin collecting through the shunt he had implanted on Wednesday. Depending on the success, the collection could take anywhere from 1 to 3 or 4 days. If they can collect enough on the first day, Dad will have a 4 day break until Friday. Next weekend he will begin the most trying part of the process. More to follow this week.
Here are some pictures of the journey, thus far:
Dad arrived in Dallas and began his first week here on Wednesday.
DAY ONE - With day one, he had a NeoStar Triple Numen central line surgically placed in his right shoulder area. His blood was thinner than normal from a variety of influencing factors. That caused some excessive bleeding. Late that evening he was allowed to leave as an outpatient and checked into the apartment that is being provided. It is a small efficiency apartment located a few blocks from the Baylor Cancer Center.
DAY TWO - Dad began to get his first Neupogen injections. This will help boost the production of white blood cells. On this day, he and Paula also attended an informational class that went through plan, schedule, and expectations. They also headed to the grocery store to stock up on food and supplies needed to live here for a few weeks. At the end of the day, Dad said he was pretty worn out.
DAY THREE - The second set of Neupogen injections were given in the morning. Kaylee and I left Waco to head north. We stopped in West for kolaches and breakfast with MawMaw and the Friday morning coffee group. The drive here was quick and painless. We arrived before lunch and were able to have a full day of family time. Since Dad had already finished his appointment for the day we had some freedom. We were able to go out for lunch, a movie, and some shopping.
DAY FOUR AND FIVE - Dad went in for his Neupogen injections. Since it was the weekend, the place was quiet and mostly empty. We were in and out fairly quick. After the appointments, we took advantage of free time again while we had it.
This coming week is reserved for collection of blood and stem cells. Monday, Dad goes in at 7 a.m. and they will begin collecting through the shunt he had implanted on Wednesday. Depending on the success, the collection could take anywhere from 1 to 3 or 4 days. If they can collect enough on the first day, Dad will have a 4 day break until Friday. Next weekend he will begin the most trying part of the process. More to follow this week.
Here are some pictures of the journey, thus far:
Thursday, June 30, 2011
Off to Dallas, We Go
Post by Valerie:
Yesterday, Dad got word that it's time. After checking the last tests, Dr. P. says to move forward to the Stem Cell Transplant. Dad had completed his 4th cycle of Revlimid and we weren't sure what they were going to suggest next. But here it is!
They said that Dad needs to be there (at the Baylor Cancer Center) and ready to start treatment on Thursday, July 7th. We will be updating the blog as much as possible during the process, so the details of what he is going through with the treatment will be available to check at a later time. The first step is to boost the production of stem cells to collect. That will take a few days initially.
While going through all of this, Dad will be staying at an apartment supported by the hospital that is located very close. Paula will be there providing care and transporting him back and forth. I will be coming in for relief as much as possible. Kaylee will be there for some of the this but will likely be spending alot of time with family and friends. Tim and Kim will be home in Waco having a baby!!!
Restoring life for Dad and Bringing life to Harrison..... Our family appreciates all of the thoughts, prayers, and kind words that have been coming. Please continue to do this, as it helps to provide strength and support in our times of need.
Yesterday, Dad got word that it's time. After checking the last tests, Dr. P. says to move forward to the Stem Cell Transplant. Dad had completed his 4th cycle of Revlimid and we weren't sure what they were going to suggest next. But here it is!
They said that Dad needs to be there (at the Baylor Cancer Center) and ready to start treatment on Thursday, July 7th. We will be updating the blog as much as possible during the process, so the details of what he is going through with the treatment will be available to check at a later time. The first step is to boost the production of stem cells to collect. That will take a few days initially.
While going through all of this, Dad will be staying at an apartment supported by the hospital that is located very close. Paula will be there providing care and transporting him back and forth. I will be coming in for relief as much as possible. Kaylee will be there for some of the this but will likely be spending alot of time with family and friends. Tim and Kim will be home in Waco having a baby!!!
Restoring life for Dad and Bringing life to Harrison..... Our family appreciates all of the thoughts, prayers, and kind words that have been coming. Please continue to do this, as it helps to provide strength and support in our times of need.
Saturday, May 21, 2011
SCT Info
Post by Tim:
We were able to meet with Dr. Pineiro again yesterday to get a little more info on the stem cell transplant (SCT) and some of the logistics... We were hoping to get going with this process as early as possible, but it looks like a few more weeks of waiting. Dr. P wants to see Dad's protein and light-chain numbers (indicators of the amount of cancer cells present) go down a little more before the SCT. This means that Dad will go through one more round of Revlimid / Dex treatment, which will be about 4-5 weeks - so we're looking at late June or early July. After this round, Dr. P will re-evaluate and, with any luck, start the SCT. If the numbers still aren't good enough, he will try an intravaneous chemo treatment (Velcade) for a few weeks.
A few things about the SCT for those not familiar:
We weren't sure until yesterday whether Dad would use his own stem cells or if a donor would be needed, or an option. Dr. P told us yesterday that a donor transplant will not be an option because the risks are too great, moreso with MM patients than patients with other cancers needing transplants, such as Leukemia, etc. This means that Dad will have an autologous transplant using his own stem cells.
The process of harvesting cells takes a few days - they first give a series of injections for a couple days to stimulate the cells and get them moving out of the bone marrow and into the blood stream, then begin drawing blood over a period of a couple of days. The intent is to harvest enough cells for this transplant, and potentially another transplant down the road.
If the harvesting process is successful, which it should be, Dad will then undergo 1 day of intense chemo that will virtually completely flush his system of both cancerous and healthy cells. After the chemo, he will have one day to rest, and the following day they will begin injecting his cells back. At this time, Dad will have essentially no immune system and extremely low blood counts - which will take approx 2-3 weeks to recover. During that 2-3 weeks, he will be monitored daily and given transfusions as necessary.
The plan is to do this whole process on an outpatient basis - which means Dad and Paula will be living in an apartment in Dallas right by the Baylor-Sammons Cancer Center and visiting the hospital everyday. The other option, if needed, is to admit him and stay at the hospital.
The desired results: low protein and light-chain counts and extended remission. Dr. P said that Dad will get back on the Revlimid immediately after the transplant, but at a lower dose. This will continue indefinitely.
It's going to be a tough process but we're all anxiouis to get it started, and done. That said, it was comforting for us just to get some sort of time frame, and more info on how everything is going to work.
Again, we really appreciate all of the support we've been getting and the thoughts and prayers. We'll post updates when he starts the SCT and throughout the process - both for family and friends to keep updated, and for other myeloma patients out there who, like us, have no idea what to expect through this whole ordeal.
Other news:
We wanted to be sure to take the time to thank the West Area Ministerial Alliance, especially Dr. John Crowder, for putting together a great banquet last week in honor of bridge builders including my grandpa, Al Payne. He has been gone for 15 years but he is definitely not forgotten around the community. It was a proud and humbling experience, and we can't express enough thanks for the turnout and the organization of this banquet. Here are a few pics from the event...
Payne family
AFH Board of Directors
And, what would a blog be without a Kaylee pic?
We were able to meet with Dr. Pineiro again yesterday to get a little more info on the stem cell transplant (SCT) and some of the logistics... We were hoping to get going with this process as early as possible, but it looks like a few more weeks of waiting. Dr. P wants to see Dad's protein and light-chain numbers (indicators of the amount of cancer cells present) go down a little more before the SCT. This means that Dad will go through one more round of Revlimid / Dex treatment, which will be about 4-5 weeks - so we're looking at late June or early July. After this round, Dr. P will re-evaluate and, with any luck, start the SCT. If the numbers still aren't good enough, he will try an intravaneous chemo treatment (Velcade) for a few weeks.
A few things about the SCT for those not familiar:
We weren't sure until yesterday whether Dad would use his own stem cells or if a donor would be needed, or an option. Dr. P told us yesterday that a donor transplant will not be an option because the risks are too great, moreso with MM patients than patients with other cancers needing transplants, such as Leukemia, etc. This means that Dad will have an autologous transplant using his own stem cells.
The process of harvesting cells takes a few days - they first give a series of injections for a couple days to stimulate the cells and get them moving out of the bone marrow and into the blood stream, then begin drawing blood over a period of a couple of days. The intent is to harvest enough cells for this transplant, and potentially another transplant down the road.
If the harvesting process is successful, which it should be, Dad will then undergo 1 day of intense chemo that will virtually completely flush his system of both cancerous and healthy cells. After the chemo, he will have one day to rest, and the following day they will begin injecting his cells back. At this time, Dad will have essentially no immune system and extremely low blood counts - which will take approx 2-3 weeks to recover. During that 2-3 weeks, he will be monitored daily and given transfusions as necessary.
The plan is to do this whole process on an outpatient basis - which means Dad and Paula will be living in an apartment in Dallas right by the Baylor-Sammons Cancer Center and visiting the hospital everyday. The other option, if needed, is to admit him and stay at the hospital.
The desired results: low protein and light-chain counts and extended remission. Dr. P said that Dad will get back on the Revlimid immediately after the transplant, but at a lower dose. This will continue indefinitely.
It's going to be a tough process but we're all anxiouis to get it started, and done. That said, it was comforting for us just to get some sort of time frame, and more info on how everything is going to work.
Again, we really appreciate all of the support we've been getting and the thoughts and prayers. We'll post updates when he starts the SCT and throughout the process - both for family and friends to keep updated, and for other myeloma patients out there who, like us, have no idea what to expect through this whole ordeal.
Other news:
We wanted to be sure to take the time to thank the West Area Ministerial Alliance, especially Dr. John Crowder, for putting together a great banquet last week in honor of bridge builders including my grandpa, Al Payne. He has been gone for 15 years but he is definitely not forgotten around the community. It was a proud and humbling experience, and we can't express enough thanks for the turnout and the organization of this banquet. Here are a few pics from the event...
Payne family
AFH Board of Directors
And, what would a blog be without a Kaylee pic?
Tuesday, April 26, 2011
Latest tests and Bridge Building (honoring PawPaw)
Post by Valerie: We wanted to offer the latest update on Dad's current status and recent test results.
Yesterday, he had an appointment with Dr. E. (oncologist) to discuss the lab tests he had completed following the first month of Revlimid treatment.
Initial m-spike: 2.2
Following first month of Revlimid, m-spike: 1.5
Following second month of Revlimid, m-spike: *find out soon
This is good news as it means he is responding well to the medication. We hope that it will improve even more when we get the results back from his second month. Dad just finished his second round of the Revlimid yesterday.
Today, Dad met with pulmonologist Dr. Rosario with Waco Lung Associates. He has had respiratory issues for over a month now. Several factors were concerning us so we felt it was best to get a full assessment of his lungs. Some of the concerns included:
Other important news:
Our family would like to notify members of the West community that there is an upcoming event honoring Al Payne (PawPaw). Here is the information submitted by Dr. John Crowder, minister of First Baptist Church of West.
"BRIDGE BUILDER'S BANQUET - This banquet is hosted by the West Area Ministerial Alliance. Each year we will honor someone who unites people in our community and builds bridges between us. This year we will posthumously honor Al Payne as one of our greatest Bridge Builders. Steve Vanek will cater the meal, a jazz ensemble from the high school will provide the dinner music, and we will present Mr. Payne's family with a very special award. Tickets are available at First Baptist Church for $15.00 each. The event is held at the West Community Center on Friday, May 13 from 7-10pm."
Yesterday, he had an appointment with Dr. E. (oncologist) to discuss the lab tests he had completed following the first month of Revlimid treatment.
Initial m-spike: 2.2
Following first month of Revlimid, m-spike: 1.5
Following second month of Revlimid, m-spike: *find out soon
This is good news as it means he is responding well to the medication. We hope that it will improve even more when we get the results back from his second month. Dad just finished his second round of the Revlimid yesterday.
Today, Dad met with pulmonologist Dr. Rosario with Waco Lung Associates. He has had respiratory issues for over a month now. Several factors were concerning us so we felt it was best to get a full assessment of his lungs. Some of the concerns included:
- history of asthma
- sleep apnea
- fear of Revlimid side effect - Pulmonary Embolism (probably not the case but he will have a CT scan tomorrow)
- very shallow breathing
- coughing
- anemia
- chest pain
Other important news:
Our family would like to notify members of the West community that there is an upcoming event honoring Al Payne (PawPaw). Here is the information submitted by Dr. John Crowder, minister of First Baptist Church of West.
"BRIDGE BUILDER'S BANQUET - This banquet is hosted by the West Area Ministerial Alliance. Each year we will honor someone who unites people in our community and builds bridges between us. This year we will posthumously honor Al Payne as one of our greatest Bridge Builders. Steve Vanek will cater the meal, a jazz ensemble from the high school will provide the dinner music, and we will present Mr. Payne's family with a very special award. Tickets are available at First Baptist Church for $15.00 each. The event is held at the West Community Center on Friday, May 13 from 7-10pm."
Sunday, March 27, 2011
Anemia, Dehydration, and Board Games
Post by all children:
Dad is in week 3 of his Revlimid treatment. The way this drug works is 3 active weeks and 1 inactive week where he takes a break. This cycle will continue 3 more times before it is completed. Then he will begin preparation for the Stem Cell Transplant.
As of this week, Dad has experienced the typical side effects of the oral chemo. He has been nauseated, tired, weak, and feeling a loss of appetite. His appointment with onclogist, Dr. E., on Thursday resulted in the latest diagnosis of anemia. This is not uncommon with this form of cancer. In order to treat that, Dad takes regular iron supplements.
The most common question we get is asking how he is feeling. Each day is different. He will have a really good day and a really bad day back-to-back. On good days, he moves around better and enjoys getting out to go to work. On bad days, he stays in his recliner or in bed more. This past week he had a really good day on Wednesday. He described it as the best he has had since the diagnosis. Thursday was not as great.
On Friday he went to work in West. He was out of the house for about 5 hours. That night our whole family was together for dinner and fun. Dad stayed fairly active through the gathering. Tim grilled steaks, potatoes, veggies, and lobster. Val, Kim, and Kaylee played outside. Paula prepared the kitchen, and Dad visited with his friend, John, for awhile inside. After dinner we relaxed and visited for awhile.
At this time we do not know whether he will need a donor for the transplant or if he will be able to have an autologous transplant where he uses some of his own healthy blood cells. We discussed with Nancy what we, as a family, would like to do - which is help promote awareness of folks like Dad who need transplants to greatly improve their quality of life and in some cases prolong life significantly. Even if he does not need a donor, someone in a similar situation somewhere else will. If he does need a donor, finding a match can be a very difficult process. The more people on the registry, the more likely anyone who needs a transplant is to find a match.
We continue to thank everyone for the thoughts, prayers and support. It really means a lot to us and to Dad and he needs all of the encouragement and positive support he can get as he gets further into the treatment process. We all feel blessed and fortunate to have such a great group of friends and family to rely on for support. Again, we will provide more updates regularly and will post information about drives or events that develop to promote awareness and to grow the registry!
Dad is in week 3 of his Revlimid treatment. The way this drug works is 3 active weeks and 1 inactive week where he takes a break. This cycle will continue 3 more times before it is completed. Then he will begin preparation for the Stem Cell Transplant.
As of this week, Dad has experienced the typical side effects of the oral chemo. He has been nauseated, tired, weak, and feeling a loss of appetite. His appointment with onclogist, Dr. E., on Thursday resulted in the latest diagnosis of anemia. This is not uncommon with this form of cancer. In order to treat that, Dad takes regular iron supplements.
The most common question we get is asking how he is feeling. Each day is different. He will have a really good day and a really bad day back-to-back. On good days, he moves around better and enjoys getting out to go to work. On bad days, he stays in his recliner or in bed more. This past week he had a really good day on Wednesday. He described it as the best he has had since the diagnosis. Thursday was not as great.
On Friday he went to work in West. He was out of the house for about 5 hours. That night our whole family was together for dinner and fun. Dad stayed fairly active through the gathering. Tim grilled steaks, potatoes, veggies, and lobster. Val, Kim, and Kaylee played outside. Paula prepared the kitchen, and Dad visited with his friend, John, for awhile inside. After dinner we relaxed and visited for awhile.
Kaylee while playing board games
Saturday was, again, not as good of a day for him. He said he didn't really feel up to moving around as much, even within the house. By the evening, he was feeling extremely fatigued and dizzy. That night Paula contacted the doc and they said to bring him in to the ER. He was admitted for the night with low blood pressure and dehydration. The goal is to keep him drinking lots of water and Gatorade while keeping active with all oral treatments. His kidney function needs to maintain good status!!!
On Sunday, Tim and Val met with Nancy Goodnight for a late breakfast. Nancy is actively involved with the national donor registry, Be The Match. Her focus is to grow the registry, inform the public, and coordinate events and donor drives. She is also a courier for the area and transports marrow, stem cells, etc when a match is found. Nancy was very informative and discussed many options for drives and events. We will provide information on these as they develop. Currently, there will be one on May 11 at First Woodway Baptist Church. This drive will offer the opportunity for folks to sign up for the registry. It has been scheduled for some time and Dad's name will be added as a possible local candidate for a transplant.
We continue to thank everyone for the thoughts, prayers and support. It really means a lot to us and to Dad and he needs all of the encouragement and positive support he can get as he gets further into the treatment process. We all feel blessed and fortunate to have such a great group of friends and family to rely on for support. Again, we will provide more updates regularly and will post information about drives or events that develop to promote awareness and to grow the registry!
Tuesday, March 8, 2011
Radiation & Chemo Journey Begins
Post by Tim: Dad wanted to give folks who follow this blog an update and let you know that he has now gone through half of his radiation treatments (5 out of 10) and has started taking oral chemotherapy (Revlimid) along with steroids as of today. The radiation and pain meds have the pain at a manageable level at the moment - and he has been pleased with the radiation experience. He's experiencing the common (from what we hear) side effects - fatigue, loss of appetite - but nothing intolerable.
Also at the moment, Kaylee is sick which presents a different type of dilemma. Aside from not wanting her to feel bad, he cannot be around her and exposed to any potentially contagious illnesses. With dad's particular disease and this route for treatment (especially since he has started the Revlimid), his immune system is weakening and not what it should be. This will be something we as a family learn to understand and adapt to.
This marks the beginning of what is going to be a long and successful journey to remission and ultimately to a stem cell transplant. So far, so good. We will provide updates throughout this journey. During the Revlimid and steroid cycles, he will have frequent doctor visits to monitor how his body is handling the drugs, and for periodic blood and bone marrow tests (mainly towards the end of the scheduled cycles) to track progress. As of now, Revlimid cycles will continue for 3 months.
I want to thank everyone for your continued support and prayers for dad and our family. Know that dad appreciates it that much more. We are certainly not the only family who is struggling / has struggled with cancer in some form. We also pray for those of you who are - and want you to know that you are not alone.
Hopefully the next update is news of continued progress - keep praying!!
Also at the moment, Kaylee is sick which presents a different type of dilemma. Aside from not wanting her to feel bad, he cannot be around her and exposed to any potentially contagious illnesses. With dad's particular disease and this route for treatment (especially since he has started the Revlimid), his immune system is weakening and not what it should be. This will be something we as a family learn to understand and adapt to.
This marks the beginning of what is going to be a long and successful journey to remission and ultimately to a stem cell transplant. So far, so good. We will provide updates throughout this journey. During the Revlimid and steroid cycles, he will have frequent doctor visits to monitor how his body is handling the drugs, and for periodic blood and bone marrow tests (mainly towards the end of the scheduled cycles) to track progress. As of now, Revlimid cycles will continue for 3 months.
I want to thank everyone for your continued support and prayers for dad and our family. Know that dad appreciates it that much more. We are certainly not the only family who is struggling / has struggled with cancer in some form. We also pray for those of you who are - and want you to know that you are not alone.
Hopefully the next update is news of continued progress - keep praying!!
Friday, March 4, 2011
How it all began
Post by Valerie: Dad had been experiencing extreme back pain since the beginning of January 2011. He went into the ER at Providence on Monday, Jan 28. There, they performed a series of tests that provided limited information. He came home that night. Two days later on Thursday, Feb 3 dad was transported by ambulance back to the ER at Providence. At that time, they performed an MRI which indicated a broken T-7 thoracic vertabrae, as well discovered a spinal mass. Recommendations included a vertebroplasty - surgically cementing the bones together and a biopsy of the mass.
Two hours later he was allowed to go home. Five hours following home arrival, he was transported back to the ER via ambulance due to a spasm induced paralysis. Friday, Feb 4, while hospitalized the biopsy results came back. The diagnosis was Multiple Myeloma. For those unaware of what this is, it is a malignancy of the bone marrow. It destroys bony tissue, causing pain and fractures. This was the first time we were faced with the term cancer.
Dad stayed in the hospital until that Sunday. The time was spent controlling his pain with strong IV meds. As a family, we tried to stay away from all of the internet details to spare ourselves of grim information before meeting with an oncologist. Of course we looked for the basics but preferred the wait for professional information and details.
That following week dad chose a specialist in Dallas who is reknowned in the state of TX for handling cases involving bone marrow. He specializes in bone marrow transplants. At that point, Dr. Pineiro discussed the diagnosis and potential treatments. He was focusing on radiation, chemotherapy, and stem cell transplant. Before treatment could begin, further testing was required to solidify this medical path.
To this date, testing has included: MRI, bone marrow biopsy, various blood testing, protein level testing, skeletal survey, and PET scan. Dad has an oncologist in Waco collaborating with Dr. Pineiro to assist with reduced travel time. It's convenient and safer being as there is significant pain involved.
Finally, on Wed March 2, dad was able to begin radiation treatment here in Waco. The proposed plan involves the following:
1. Radiation for 8-10 days
*began on March 2
2. Take Revlimid (an immunomodulatory agent - oral chemotherapy) for 3-4 months. It works by helping the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.
*will begin as soon as the meds arrive
3. Strong dose of chemotherapy
4. Stem cell transplant
We are hopeful that these treatments will control everything and that Dad can get well! We will provide updates as much as possible.
Two hours later he was allowed to go home. Five hours following home arrival, he was transported back to the ER via ambulance due to a spasm induced paralysis. Friday, Feb 4, while hospitalized the biopsy results came back. The diagnosis was Multiple Myeloma. For those unaware of what this is, it is a malignancy of the bone marrow. It destroys bony tissue, causing pain and fractures. This was the first time we were faced with the term cancer.
Dad stayed in the hospital until that Sunday. The time was spent controlling his pain with strong IV meds. As a family, we tried to stay away from all of the internet details to spare ourselves of grim information before meeting with an oncologist. Of course we looked for the basics but preferred the wait for professional information and details.
That following week dad chose a specialist in Dallas who is reknowned in the state of TX for handling cases involving bone marrow. He specializes in bone marrow transplants. At that point, Dr. Pineiro discussed the diagnosis and potential treatments. He was focusing on radiation, chemotherapy, and stem cell transplant. Before treatment could begin, further testing was required to solidify this medical path.
To this date, testing has included: MRI, bone marrow biopsy, various blood testing, protein level testing, skeletal survey, and PET scan. Dad has an oncologist in Waco collaborating with Dr. Pineiro to assist with reduced travel time. It's convenient and safer being as there is significant pain involved.
Finally, on Wed March 2, dad was able to begin radiation treatment here in Waco. The proposed plan involves the following:
1. Radiation for 8-10 days
*began on March 2
2. Take Revlimid (an immunomodulatory agent - oral chemotherapy) for 3-4 months. It works by helping the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.
*will begin as soon as the meds arrive
3. Strong dose of chemotherapy
4. Stem cell transplant
We are hopeful that these treatments will control everything and that Dad can get well! We will provide updates as much as possible.
Subscribe to:
Posts (Atom)