This coming week will begin the second phase of my treatment for Non Hodgkins Peripheral T-Cell Lymphoma. Phase I was a Clinical Trial at Duke Cancer Center, consisting of 24 chemotherapy treatments spread over 28 weeks. That phase was successfully completed last month, and I am now entering Phase II of my treatment. This new phase involves a stem cell transplant (aka bone marrow transplant), also to be performed at Duke. I will be receiving an Autologus Transplant, which means that the transplant will utilize my own stem cells, rather that cells from a donor. One of the main advantages of a "Auto" transplant is that my body will be much less likely to reject my own cells, versus those from another person.
To say that stem cells transplants are complex (and expensive) is an understatement. The Adult Bone Marrow Transplant at Duke began in 1983 and has performed over 2000 transplants. They currently perform about 200 adult transplants each year. Duke also has a Pediatric Bone Marrow Transplant Program, which is separate from the ABMT program. Our daughter was an RN in the pediatric program a few years ago and has been a tremendous resource in helping us understand what lies ahead. The concept is fairly simple and consists of 3 basic steps: 1. Remove a quantity of stem cells from the blood stream and freeze them for later use. 2. Administer high dose chemotherapy which is meant to destroy any remaining cancer cells. Unfortunately, this also destroys the normal cells of the bone marrow and the immune system. 3. Transplant or infuse the stored stem cells back into the bloodstream, where they migrate to the bone marrow. Usually, within a couple of weeks, they begin making new white blood cells, followed by new platelet and new red blood cell production. This rebuilding process takes months, before the patient has reestablished their immune system and is capable of resuming more normal activities.
Next week we head for Duke again, to meet with Dr. Michael Horwitz and his transplant team. A series of tests will be performed to evaluate heart and lung functions, and of course a complete blood workup since it is not possible to enter a cancer related facility without having blood drawn. Then we will attend a class for New Tranplant Patients, designed to cover the very long list of details and duties for patients and caregivers. Finally, a meeting with Dr. Horwitz will review status, answer questions, and hopefully get the green light to proceed.
The stem cell collection or "harvesting" will take place the week of February 18, and the following week I will be admitted to the hospital, for 5 days, to complete the high dose chemotherapy. Then we will move into an apartment near the hospital, which will serve as home base for our daily visits to the transplant clinic for testing and evaluation. So the last part of February and most of March will be spent as residents of Durham. Where better to be located during March madness (an epic basketball event, should you not be aware).
We are beginning to pack boxes with toothpaste, underwear, food, computers, shampoo, dish soap, coffee filters, books to read, and the myriad of other items it takes to live away from home for 6 weeks. We're making a list and checking it twice. We are trying to look at it as an adventure, although I doubt I will be feeling like doing a lot of activities. But it is what it is and we will get through it just fine. In June we will look back and smile, glad that we have moved beyond transplant, and thankful for all our blessings along the way.
In the meantime, keep us in your thoughts and prayers.
Saturday, January 26, 2013
Tuesday, January 22, 2013
The beard is back.
My last chemo treatment was on December 11, which was almost 6 weeks ago. And all of a sudden my hair has begun to grow again - on the head and on the chin. So I thought I would post a picture of my latest effort to grow a beard again. It is not quite as full as it was before, but with a little more time I think I may be able to get close to where I was before this whole cancer thing decided to crash my party.
I'm not sure how long it will last since I will need to go through a brief period of High Dose Chemotherapy at the beginning of my transplant. I may go bald and beardless again before this is over, but since we are taking everything one day at a time, I'm just going to enjoy the beard on a day by day basis. Just thought I would share my "progress" with everyone :-)
I'm not sure how long it will last since I will need to go through a brief period of High Dose Chemotherapy at the beginning of my transplant. I may go bald and beardless again before this is over, but since we are taking everything one day at a time, I'm just going to enjoy the beard on a day by day basis. Just thought I would share my "progress" with everyone :-)
Saturday, January 19, 2013
Rest of the answer.
Dr. Beaven called again Friday morning to advise that she had talked with Drs. Horwitz and Kelsy, and they have agreed on a course of treatment. It is different than what had been discussed just the day before, but that was before the 'wizards' had been able to confer with each other. The plan is to proceed to bone marrow transplant now, and followup with radiation on the persistent node in my abdomen as soon as possible after the transplant is complete. So off we go.
Exact timing is still uncertain, but I have an appointment with Dr. Horwitz on Thursday, 1/31, to discuss transplant details and have several tests, including breathing, EKG, etc. The transplant should begin shortly thereafter. So it looks like Holly and I will be spending February in Durham, living in an apartment very near the hospital and transplant clinic. We will have a lot of details to take care of in the next couple of weeks, so the time will probably pass quickly. The specific timing and sequence of events will become clearer over the coming days, but we have enough to run with in the meantime.
One thing that we do know for sure in that the Lord will be with us every step of the way. He has demonstrated His might presence in so many ways during the first phase of my treatment, spread over the last 7 months. And if there is one thing that I know for sure, it is that His spirit will be within me, and all around me, every moment of every day. That knowledge is a great source of comfort during a time of uncertainty and anxiety, but that knowledge is also the source of my strength and confidence.
I will post additional information as it becomes available, so keep checking back and staying in touch.
Exact timing is still uncertain, but I have an appointment with Dr. Horwitz on Thursday, 1/31, to discuss transplant details and have several tests, including breathing, EKG, etc. The transplant should begin shortly thereafter. So it looks like Holly and I will be spending February in Durham, living in an apartment very near the hospital and transplant clinic. We will have a lot of details to take care of in the next couple of weeks, so the time will probably pass quickly. The specific timing and sequence of events will become clearer over the coming days, but we have enough to run with in the meantime.
One thing that we do know for sure in that the Lord will be with us every step of the way. He has demonstrated His might presence in so many ways during the first phase of my treatment, spread over the last 7 months. And if there is one thing that I know for sure, it is that His spirit will be within me, and all around me, every moment of every day. That knowledge is a great source of comfort during a time of uncertainty and anxiety, but that knowledge is also the source of my strength and confidence.
I will post additional information as it becomes available, so keep checking back and staying in touch.
Friday, January 18, 2013
Part of the answer.
After several days of waiting (cancer helps teach you patience) Dr. Beaven finally called yesterday with the results of the biopsy done last Friday. As expected, it showed that the persistent lymph node in my abdomen contains Peripheral T-Cell Lymphoma cells. The 6 months of chemotherapy treatments were quite successful at eradicating the diseased cells everywhere else in my body, but for reasons not totally understood, that one lymph node resisted the effects of the chemo. It must now be dealt with in a different manner.
The biopsy was done last Friday and the results had been expected by about Tuesday. But Tuesday came and went, and it took 2 more days before the final determination was available. Apparently the Pathologists had to go back and do some additional tests to confirm their findings. Although we had forgotten, the same thing happened back in June with the initial biopsy. Those results were also delayed for additional testing. Apparently my particular form of cancer is so rare that it is seldom seen in the pathology labs. If it was something they see everyday, the determination would be made more quickly. But when it is rarely ever seen, additional testing, and confirmation by other experts, is needed to be positive. So my advise is, if you are going to get cancer, pick one that is more common and more easily recognizable :-)
While the biopsy results are now known, the various doctors have not yet had a chance to meet and discuss their recommendations. The results of that consultation probably won't be ready until early next week. But based on Dr. Beaven's comments, it would appear that they will want to treat that lymph node with a combination of radiation and chemotherapy. There are two reasons for this combined approach. First, the chemotherapy makes the cancer cells more sensitive to the radiation. So this combined treatment is likely to be more successful than radiotherapy alone. It will also allow the use of lower levels of radiation. Secondly, the whole reason behind the decision to have a bone marrow transplant, is that my particular type of lymphoma has a strong tendency to recur or come back. So the longer the period since the completion of the chemotherapy, and the start of the transplant process, the more opportunity for the cancer to reappear. By combining chemo and radiation therapies, the chemo will help insure that the cancer elsewhere in my body is kept in check.
Assuming that this combined approach is confirmed, the only remaining questions are when it will start and how long it will last. Hopefully we can get started with this second phase of treatment late next week, and earlier discussions with the Radiologist suggest that it could last as long as 4 or 5 weeks. So we may be only a few days away from starting daily trips to Duke for treatment. Does anyone have a helicopter we could borrow for a few weeks?
The biopsy was done last Friday and the results had been expected by about Tuesday. But Tuesday came and went, and it took 2 more days before the final determination was available. Apparently the Pathologists had to go back and do some additional tests to confirm their findings. Although we had forgotten, the same thing happened back in June with the initial biopsy. Those results were also delayed for additional testing. Apparently my particular form of cancer is so rare that it is seldom seen in the pathology labs. If it was something they see everyday, the determination would be made more quickly. But when it is rarely ever seen, additional testing, and confirmation by other experts, is needed to be positive. So my advise is, if you are going to get cancer, pick one that is more common and more easily recognizable :-)
While the biopsy results are now known, the various doctors have not yet had a chance to meet and discuss their recommendations. The results of that consultation probably won't be ready until early next week. But based on Dr. Beaven's comments, it would appear that they will want to treat that lymph node with a combination of radiation and chemotherapy. There are two reasons for this combined approach. First, the chemotherapy makes the cancer cells more sensitive to the radiation. So this combined treatment is likely to be more successful than radiotherapy alone. It will also allow the use of lower levels of radiation. Secondly, the whole reason behind the decision to have a bone marrow transplant, is that my particular type of lymphoma has a strong tendency to recur or come back. So the longer the period since the completion of the chemotherapy, and the start of the transplant process, the more opportunity for the cancer to reappear. By combining chemo and radiation therapies, the chemo will help insure that the cancer elsewhere in my body is kept in check.
Assuming that this combined approach is confirmed, the only remaining questions are when it will start and how long it will last. Hopefully we can get started with this second phase of treatment late next week, and earlier discussions with the Radiologist suggest that it could last as long as 4 or 5 weeks. So we may be only a few days away from starting daily trips to Duke for treatment. Does anyone have a helicopter we could borrow for a few weeks?
Sunday, January 13, 2013
Family tree.
As some of you may recall from some of my earlier posts, I enjoy researching our family trees (both mine and Holly's) and finding out new details about some relatives from times past, or even finding an occasional brand new relative. So since retiring, I have invested a fair amount of time and effort exploring the Davis and Lloyd ancestries. I just love the excitement and mystery of the hunt.
This year, we were fortunate enough to be able to spend Christmas eve with both of our kids and their families, all at the same time. What a blessing that was. "Santa" brought me one particularly large box, beautifully wrapped, and sat it at my feet. Of course your imagination runs wild when you get a large gift, and mine considered several different possibilities. After I could stand it no more, I began to open the present, with some help from a pair of 2 and 4 year olds. Inside I found a handmade blanket, or quilt, 5' by 3 1/2 ' in size. On it was a tree with several limbs, and on the limbs were several leaves. Each of the leaves was personally designed and made by one of my kids, my kids-in-law, or my grand kids. Each leaf contained something very specific to that person, and their name. Near the base of the tree is a heart, with my and Holly's initials. And then on the branches are the ten leaves representing the next two generations.
In the box was a card, which read as follows:
Since the 10 of us aren't able to be with you as much as we would like, we needed something to "fill in" for us. Each leaf and every stitch on this blanket was made while thinking of you....praying that this guilt will keep you warm, comfort you, make you smile, soften your discomfort, warm your heart and remind you of the incredible love that we all have for you....during the next few months and for many, many years to come. We are so blessed to be leaves on your beautiful tree. Jill, Jeff, Ben, Max, Rose, Adam, Annie, Grace, Eliza, Owen.
This year, we were fortunate enough to be able to spend Christmas eve with both of our kids and their families, all at the same time. What a blessing that was. "Santa" brought me one particularly large box, beautifully wrapped, and sat it at my feet. Of course your imagination runs wild when you get a large gift, and mine considered several different possibilities. After I could stand it no more, I began to open the present, with some help from a pair of 2 and 4 year olds. Inside I found a handmade blanket, or quilt, 5' by 3 1/2 ' in size. On it was a tree with several limbs, and on the limbs were several leaves. Each of the leaves was personally designed and made by one of my kids, my kids-in-law, or my grand kids. Each leaf contained something very specific to that person, and their name. Near the base of the tree is a heart, with my and Holly's initials. And then on the branches are the ten leaves representing the next two generations.
In the box was a card, which read as follows:
Since the 10 of us aren't able to be with you as much as we would like, we needed something to "fill in" for us. Each leaf and every stitch on this blanket was made while thinking of you....praying that this guilt will keep you warm, comfort you, make you smile, soften your discomfort, warm your heart and remind you of the incredible love that we all have for you....during the next few months and for many, many years to come. We are so blessed to be leaves on your beautiful tree. Jill, Jeff, Ben, Max, Rose, Adam, Annie, Grace, Eliza, Owen.
Saturday, January 12, 2013
The waiting game.
Last Thursday we met with Dr. Kelsey in Radiation Oncology at Duke. The purpose was to discuss the options for radiation treatment of that remaining persistent node in my abdomen. The good news was that Lymphoma is highly responsive to radiation and he sees no obstacles to being able to treat Mr. Persistent. The bad news was that it could involve up to 4 or 5 weeks of treatment, 5 days per week. I had been thinking more in the range of 2 or 3 weeks so that was a bit of a shocker. But the final period has yet to be finalized.
Then on Friday we headed back to Duke for a CT-Guided Needle Biopsy of Mr. Persistent. The procedure went far more smoothly than I had anticipated. There are times when you want and need to be well read and well informed on various aspects of your treatment. This, however, was one of those instances where I felt that knowing less was probably more advisable. Sometimes ignorance is bliss. But I was still not looking forward to Friday morning. Much to my surprise and delight everything went well and they wound up taking 9 samples for further study.
The pathology report on the biopsy will probably not be available until next Tuesday. At that point Drs. Beaven, Horwitz and Kelsy (the wizards as I call them) will collectively review the results and develop a plan of treatment, most likely involving some level of radiation and then proceeding on to stem cell (bone marrow) transplant. Whatever the result of their review, it will undoubtedly take place over the next 4 or 5 months and have a profound impact on our daily lives during that period. We are prepared for whatever lies ahead and know that, with God's help, and the support of family and friends, we will get through this just fine. Our family motto "We're going to beat this" is still in place and this is just another phase towards that end.
Still, the next several days, until we know more details from the wizards, will be long and filled with much anticipation.
Then on Friday we headed back to Duke for a CT-Guided Needle Biopsy of Mr. Persistent. The procedure went far more smoothly than I had anticipated. There are times when you want and need to be well read and well informed on various aspects of your treatment. This, however, was one of those instances where I felt that knowing less was probably more advisable. Sometimes ignorance is bliss. But I was still not looking forward to Friday morning. Much to my surprise and delight everything went well and they wound up taking 9 samples for further study.
The pathology report on the biopsy will probably not be available until next Tuesday. At that point Drs. Beaven, Horwitz and Kelsy (the wizards as I call them) will collectively review the results and develop a plan of treatment, most likely involving some level of radiation and then proceeding on to stem cell (bone marrow) transplant. Whatever the result of their review, it will undoubtedly take place over the next 4 or 5 months and have a profound impact on our daily lives during that period. We are prepared for whatever lies ahead and know that, with God's help, and the support of family and friends, we will get through this just fine. Our family motto "We're going to beat this" is still in place and this is just another phase towards that end.
Still, the next several days, until we know more details from the wizards, will be long and filled with much anticipation.
Thursday, January 3, 2013
The graduate moves on
We met with Dr. Beaven at Duke yesterday to review the results of the reassessment testing I completed last week. After 28 weeks of chemotherapy, as a participant in a clinical trial for T-cell Lymphoma, I have completed my course of treatment. I have graduated from the program and am ready to move on. There was no formal graduation ceremony, and I will not receive a diploma to hang on the wall, but my body has been cleansed of that horrible disease, and my prognosis is significantly better than it was just 6 months ago. God is so good.
Having successfully completed my initial course of study, I am now ready to move on to graduate school. Dr. Beaven and Dr. Horwitz reviewed my test results and agree that I am ready to begin preparing for my bone marrow transplant. But before we can start that process, a couple of other interim steps are required. I still have that one persistent lymph node in my abdomen that has not been responsive to my chemo treatments. While the doctors do not feel that the presence of this node represents a problem, they would like to see if they can get some additional information about it. So on Friday of next week I am scheduled for a CT-guided biopsy of that lymph node. Hopefully, that will provide a definitive diagnosis, which will allow the doctors to better understand the nature of the cells in that node. The expectation is that the cells are also Lymphoma. Most likely, the biopsy will be followed by 2 or 3 weeks of radiation treatments, to start to knock down that stubborn area.
Following the biopsy/radiation period, I will then begin the transplant process. Back on August 24, 2012, I wrote a more lengthy post containing information about the why's and wherefore's of bone marrow transplants. You may wish to go back in the Blog Archives, on the right of the screen, to read that post. Certainly I will be posting more about it in the coming weeks, but we have a few things to complete before that transplant comes into focus.
Overall, we are thrilled with the progress that has taken place since my diagnosis on June 6, 2012. The rare and aggressive cancer that was discovered almost by accident (a.k.a. God's divine intervention) has been essentially wiped out. I can think of many pursuits, other than a bone marrow transplant, that I would prefer to undertake in the months ahead. But for someone who wasn't sure he would even be alive to see the year 2013, having graduated from Clinical Trial University, and now pursuing an advanced degree in Total Disease Eradication is pretty darn exciting. And my goal is to graduate summa cum laude (with highest honor).
Having successfully completed my initial course of study, I am now ready to move on to graduate school. Dr. Beaven and Dr. Horwitz reviewed my test results and agree that I am ready to begin preparing for my bone marrow transplant. But before we can start that process, a couple of other interim steps are required. I still have that one persistent lymph node in my abdomen that has not been responsive to my chemo treatments. While the doctors do not feel that the presence of this node represents a problem, they would like to see if they can get some additional information about it. So on Friday of next week I am scheduled for a CT-guided biopsy of that lymph node. Hopefully, that will provide a definitive diagnosis, which will allow the doctors to better understand the nature of the cells in that node. The expectation is that the cells are also Lymphoma. Most likely, the biopsy will be followed by 2 or 3 weeks of radiation treatments, to start to knock down that stubborn area.
Following the biopsy/radiation period, I will then begin the transplant process. Back on August 24, 2012, I wrote a more lengthy post containing information about the why's and wherefore's of bone marrow transplants. You may wish to go back in the Blog Archives, on the right of the screen, to read that post. Certainly I will be posting more about it in the coming weeks, but we have a few things to complete before that transplant comes into focus.
Overall, we are thrilled with the progress that has taken place since my diagnosis on June 6, 2012. The rare and aggressive cancer that was discovered almost by accident (a.k.a. God's divine intervention) has been essentially wiped out. I can think of many pursuits, other than a bone marrow transplant, that I would prefer to undertake in the months ahead. But for someone who wasn't sure he would even be alive to see the year 2013, having graduated from Clinical Trial University, and now pursuing an advanced degree in Total Disease Eradication is pretty darn exciting. And my goal is to graduate summa cum laude (with highest honor).
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