Eric's been feeling very good this week, apparently with good reason: platelets which were 5 last week are 139 today (150 - 400 is normal). It looks like Dr. A's treatment plan is working. We hope to hear from him later today and hope he will now start tapering off the Prednisone.
Rapid infusion Rituxan at 9:30 tomorrow morning. Looks like as uneventful a week as we could possibly have hoped for.
Thank you all for prayers!
Maureen
Friday, January 31, 2014
Sunday, January 26, 2014
First weekly Rituxan
Appointment time 2:30; brought to treatment room at 4. Smaller dose of Rituxan than the usual, administered more quickly than usual, finished in just over 2 hours , including the pre-meds of Tylenol and Benadryl. No reaction during infusion, felt well afterwards, and all night. Go forth and multiply, platelets!!! Let's pray for an uneventful week and a good report on Friday.
Maureen
Maureen
Friday, January 24, 2014
After four days away
Blood work this morning: platelets 5. Previously treated with platelet infusions and IVIG, the doctor managing the ITP, the benign hematologist, Dr. A, is ordering a new drug, romiplostim, to be administered today and weekly every Friday, in addition to the Saturday Rituxan treatments. When he sees the blood work next Friday, he'll decide if it's time to start weaning off the Prednisone which doesn't seem to be helping the ITP. The lymphoma doctor, Dr. S, has also ordered 6 units of platelets today. We'll be heading to the ATC, Ambulatory Treatment Center, (where Eric gets his chemo and all of the infusions and transfusions) for the platelets and romiplostim shortly for what, we hope, will be a fairly quick process. Anything under 2 hours is quick.
Eric has been experiencing heart palpitations and shortness of breath in recent weeks and told Dr. A about it today. These are possible serious side effects of several of the things he is taking, but could also be signs of something else. ( Nothing is ever simple.) The doctor ordered an EKG which came back fine. He also ordered a CT of the chest to look at the heart and lungs and to rule out blood clots. (Can someone with almost no platelets really have a blood clot?) We are waiting for the results of the CT. I'll post more later to let you know the results.
The ITP continues to be a source of seemingly endless complications, resulting in many, many hours at Anderson and a steady stream of procedures and tests. Please let the romiplostim be the answer we need!
Edit: We haven't heard back about the CT scan. The platelets and romiplostim took about 4 hours. Two good things: the romiplostim is just an injection, like getting a flu shot; much better than an IV. The IV from today was left in so Eric doesn't have to get another one tomorrow. He had to have blood drawn twice today and IVs inserted twice.
Back tomorrow at 2:30 for the Rituxan. This is the drug that makes Eric so sick, but that supposedly gets better the more you get it. Let's pray that's true. Tomorrow is the third dose. And then we hold our breaths again, hoping Eric doesn't get sick from the Rituxan, hoping to stay away from MD Anderson until next Friday's usual 7 am blood work, and praying that we will finally have good platelet results and that they start tapering off the Prednisone.
Maureen
Eric has been experiencing heart palpitations and shortness of breath in recent weeks and told Dr. A about it today. These are possible serious side effects of several of the things he is taking, but could also be signs of something else. ( Nothing is ever simple.) The doctor ordered an EKG which came back fine. He also ordered a CT of the chest to look at the heart and lungs and to rule out blood clots. (Can someone with almost no platelets really have a blood clot?) We are waiting for the results of the CT. I'll post more later to let you know the results.
The ITP continues to be a source of seemingly endless complications, resulting in many, many hours at Anderson and a steady stream of procedures and tests. Please let the romiplostim be the answer we need!
Edit: We haven't heard back about the CT scan. The platelets and romiplostim took about 4 hours. Two good things: the romiplostim is just an injection, like getting a flu shot; much better than an IV. The IV from today was left in so Eric doesn't have to get another one tomorrow. He had to have blood drawn twice today and IVs inserted twice.
Back tomorrow at 2:30 for the Rituxan. This is the drug that makes Eric so sick, but that supposedly gets better the more you get it. Let's pray that's true. Tomorrow is the third dose. And then we hold our breaths again, hoping Eric doesn't get sick from the Rituxan, hoping to stay away from MD Anderson until next Friday's usual 7 am blood work, and praying that we will finally have good platelet results and that they start tapering off the Prednisone.
Maureen
Tuesday, January 21, 2014
Everything is subject to change daily
Eric came home Saturday feeling pretty well and was so happy to be feeling that well, given how sick he was after the Rituxan last month. By late evening, he wasn't feeling quite so well. All the usual symptoms were present: fever, chills, aches, weakness, nausea, sleeplessness. With Tylenol and Zofran we tried to manage his symptoms as best we could, especially since he had to be back on Sunday for round 2 of his treatment. He started to feel better on the way to Anderson Sunday afternoon. By the time we got there, his temperature was back to normal.
Treatment went without any problems and he felt reasonably well. Night time rolls around and again, all the bad symptoms return. He was sick all Sunday night and Monday morning, but he felt better, except for feeling weak and tired, by early evening on Monday.
This morning, he feels a bit weak and we are seeing the "red dots" (petechiae) returning. We pray they don't increase and that we can stay away from Anderson until the next appointment on Friday.
Maureen
Treatment went without any problems and he felt reasonably well. Night time rolls around and again, all the bad symptoms return. He was sick all Sunday night and Monday morning, but he felt better, except for feeling weak and tired, by early evening on Monday.
This morning, he feels a bit weak and we are seeing the "red dots" (petechiae) returning. We pray they don't increase and that we can stay away from Anderson until the next appointment on Friday.
Maureen
Saturday, January 18, 2014
Second course of Chemo, Day 1
Chemo went way better than last month, thank God. Jessica went with Eric today and spent most of his treatment time with him which was nice for both of them. It was her first time at Anderson and she did great. It can be a tough thing to do, especially if you've never been before.
I have to believe all the prayers that were said today made a big difference. Other than feeling tired, Eric felt fairly well when he came home today. Thanks for the prayers. Email me or text me or call me if you want to be added to the prayer circle and I'll let you know at special moments when we'd like extra prayers, like today before the chemo. Pray all the time, though! Next chemo tomorrow afternoon at 1:30. Next appointment after that is for blood work on Friday. Unless anything happens between now and then, I'll update next Friday.
Maureen
I have to believe all the prayers that were said today made a big difference. Other than feeling tired, Eric felt fairly well when he came home today. Thanks for the prayers. Email me or text me or call me if you want to be added to the prayer circle and I'll let you know at special moments when we'd like extra prayers, like today before the chemo. Pray all the time, though! Next chemo tomorrow afternoon at 1:30. Next appointment after that is for blood work on Friday. Unless anything happens between now and then, I'll update next Friday.
Maureen
Friday, January 17, 2014
Long week
We didn't wrap up Wednesday until late, getting home at 12:30 AM. The second IVIG was done on Thursday afternoon, finishing up about 2:15 AM. We got home just after 3 AM, slept for a couple of hours, then got up at 6 to get into rush hour traffic to get back for a 7 AM appointment this morning. Platelets had come up to just over 100 so we were out of there in a few hours, relieved to not face another long day. Blood pressure has been high the last two days. Not sure why.
Chemo tomorrow all day, then just a couple of hours on Sunday. Blood next Friday, Rituxan to start treating the ITP next Saturday. By the way, we've learned that the complication of the ITP with this lymphoma is indeed rare as the doctor had indicated, happening in only about 2% of cases.
It's been a difficult, exhausting week.
Maureen
Chemo tomorrow all day, then just a couple of hours on Sunday. Blood next Friday, Rituxan to start treating the ITP next Saturday. By the way, we've learned that the complication of the ITP with this lymphoma is indeed rare as the doctor had indicated, happening in only about 2% of cases.
It's been a difficult, exhausting week.
Maureen
Wednesday, January 15, 2014
A Little Overwhelmed
Platelets are low again: 39. After finally leaving a supposed 10:45 appointment with the doctor at 2:00, here we are again at the transfusion unit waiting for a 4 hour IVIG (intravenous immunoglobulin) infusion which will be repeated again tomorrow morning at 9. The ITP has really thrown a monkey wrench into things, not the least of which is Eric trying to settle into his new job while juggling treaments and a completely unpredictable schedule at M.D. Anderson. He can no longer come in for his blood work on Saturdays. Now he'll have to come in on Fridays and be seen by someone in the Lymphoma center. It doesn't sound like much but this isn't like going other places. Here it usually takes hours. How many? Who knows? Two, three, four, more? Yup. And if the blood work indicates treatment is necessary, like today, add another 4 or 5 hours or more. So, no more doing that on Saturdays and not having to miss work.
That doesn't free up Saturdays, though. Rituxan, one of Eric's chemo drugs that I told you about previously, is going to be infused every Saturday for four Saturdays in addition to the chemo treatments. This is to treat the ITP and platelet issues, along with the Prednisone which is still being continued, and continued sporadic IVIG. It's not of any consolation that the doctor deems the difficulties being presented by the ITP to be uncommon and requiring the combined efforts of the lymphoma team and the benign hematology team.
(As I write, the nurse just said the IVIG infusion is going to take SEVEN hours! See what I mean about unpredictable?)
ITP still expected to get better as lymphoma gets better. Between chemo treatments 3 and 4 (March) another bone marrow biopsy and scans will be done to see how the cancer is responding to treatment. We'll see the doctor for results the Wednesday before the March chemo treatment, around March 12 (I don't have a calendar handy). For now, we will just take things week by week at the mercy of blood tests every Friday unless they vary so much that the doc decides they need to test more frequently.
So, to sum up today: Regular Friday blood work and follow up visits. Weekly Rituxan on Saturdays. Chemo on 1/18 and 1/19 as planned. Prednisone continues. IVIG today and tomorrow and as needed going forward.
If we can have a couple of uneventful days, I'll be back on Friday to tell you what the blood results are.
Maureen
That doesn't free up Saturdays, though. Rituxan, one of Eric's chemo drugs that I told you about previously, is going to be infused every Saturday for four Saturdays in addition to the chemo treatments. This is to treat the ITP and platelet issues, along with the Prednisone which is still being continued, and continued sporadic IVIG. It's not of any consolation that the doctor deems the difficulties being presented by the ITP to be uncommon and requiring the combined efforts of the lymphoma team and the benign hematology team.
(As I write, the nurse just said the IVIG infusion is going to take SEVEN hours! See what I mean about unpredictable?)
ITP still expected to get better as lymphoma gets better. Between chemo treatments 3 and 4 (March) another bone marrow biopsy and scans will be done to see how the cancer is responding to treatment. We'll see the doctor for results the Wednesday before the March chemo treatment, around March 12 (I don't have a calendar handy). For now, we will just take things week by week at the mercy of blood tests every Friday unless they vary so much that the doc decides they need to test more frequently.
So, to sum up today: Regular Friday blood work and follow up visits. Weekly Rituxan on Saturdays. Chemo on 1/18 and 1/19 as planned. Prednisone continues. IVIG today and tomorrow and as needed going forward.
If we can have a couple of uneventful days, I'll be back on Friday to tell you what the blood results are.
Maureen
Saturday, January 11, 2014
It's always something
The hematologist said he expected the platelet count to enter the normal range (150-400) in the coming days, but we were still a little apprehensive coming for the weekly Saturday morning blood work this morning. Great news on the platelets: 159. They were 2 last Saturday.
Eric's magnesium level of 1.7, however, is just below normal of 1.8 to 2.9 and his orders require an IV infusion of magnesium when his level is 1.8 or below. So, here we sit in the infusion area waiting and hoping it's a short wait. Apparently the iv doesn't take long, but you never know how long you have to wait to get it. Edit: After waiting over two hours to get started on the IV, it seems the drip will take another two hours.
Eric doesn't have a PICC line or a CVC so he has to get stuck for every blood draw and IV. With all of the recent transfusions and his hospital stay, his poor hands and arms are covered in bruises. Worse than the waiting is knowing he has to get yet another IV today.
Next blood work and lymphoma doctor's appointment Wednesday, the 15th. Benign Hematologist appointment Friday, 1/17. Blood work Saturday, 1/18. Next chemo Saturday, 1/18 and Sunday, 1/19.
Maureen
Eric's magnesium level of 1.7, however, is just below normal of 1.8 to 2.9 and his orders require an IV infusion of magnesium when his level is 1.8 or below. So, here we sit in the infusion area waiting and hoping it's a short wait. Apparently the iv doesn't take long, but you never know how long you have to wait to get it. Edit: After waiting over two hours to get started on the IV, it seems the drip will take another two hours.
Eric doesn't have a PICC line or a CVC so he has to get stuck for every blood draw and IV. With all of the recent transfusions and his hospital stay, his poor hands and arms are covered in bruises. Worse than the waiting is knowing he has to get yet another IV today.
Next blood work and lymphoma doctor's appointment Wednesday, the 15th. Benign Hematologist appointment Friday, 1/17. Blood work Saturday, 1/18. Next chemo Saturday, 1/18 and Sunday, 1/19.
Maureen
Friday, January 10, 2014
The past two months
Eric's had a lipoma (a benign fatty tumor) on his bicep for years which was never problematic. It's not until they become problematic they are surgically removed and so Eric was scheduled to have his removed in day surgery on November 16. Following normal pre-surgery protocol, he had blood drawn the day before surgery which resulted in a finding of a critically low blood platelet count of 37 compared to the norm which is 150-400. Since platelets are necessary for blood clotting and preventing uncontrollable bleeding, the surgery was canceled and Eric referred to a hematologist/oncologist.
Following a series of blood tests, a CT scan, and an excruciatingly painful bone marrow biopsy, Eric was presented with a diagnosis of stage IV Chronic Lymphocytic Leukemia/ Small Cell Lymphocytic Lymphoma (CLL/SLL), an incurable but "managrable" blood cancer (chronic). These are two diseases that are treated identically and usually referred to jointly, however, Eric technically has the latter, the lymphoma. Our understanding of "manageable" is that, with treatment, the disease goes into remission but always returns, with the length of those remissions always an unknown: perhaps a year, perhaps two, perhaps more.
Before proceeding with treatment at the local facility where we had been going, we talked it over and decided we should check out M.D. Anderson first. We never looked back. So began another round of diagnostic testing, including a PET/ CT scan and two additional bone marrow biopsies. The results showed several enlarged lymph nodes but, according to the doctor, none that are "exceptionally large" and, best of all, no metastases in any other organs, and no enlargement of the spleen or involvement of the liver. The bone marrow showed about 50% infiltration of disease. Eric was scheduled to begin a 6 month course of chemotherapy, receiving Rituxan and Bendamustine infusions over two day periods every 28 days, with his first treatment on 12/21.
The first day of chemo started out well for about the first 4 hours until the side effects of Rituxin that we had been warned about started to kick in: extreme nausea, uncontrollable chills and trembling, fever, body aches, malaise. The total treatment took about 10 hours or so. Eric ran a fever all night which was scary, but by morning he felt pretty well as we headed back to M. D. Anderson for day two of the treatment (12/22) which consists only of the Bendamustine. The infusion time was much shorter, we were only there a couple of hours, and, best of all, Eric felt pretty normal, even well enough to play golf the next day (12/23).
We were happy to be able to celebrate Christmas, finally. By Christmas night, everyone started dropping like flies with the flu, starting with Jackie. By the 28th, it had hit all of us who had been together for Christmas and not had the flu shot (except Nicole): Jackie, Jessica, Allison, Mark, Joey, and me. With Eric's severely compromised immunity (part of his disease) we made sure he got his flu shot right after his diagnosis but there was still concern that he could catch the flu despite having had the shot. On 12/31 he was feeling achy and tired but didnt seem to have any of the upper respiratory symptoms everyone else had. Late in the day on 1/1, Eric noticed he was breaking out in hives and some sort of rash all over his head, face, and neck. He started taking benadryl but didnt want to go to the ER. The next morning, Thursday, 1/2, it was shocking how horribly it had evolved into a much worse condition with thousands and thousands of tiny red dots covering him. The doctor ordered him to the Anderson ER where he received a blood platelet transfusion because his platelets were down to 8. Instead of coming for the usual Saturday blood work, the doc said to come on Sunday, 1/5, which we did, to find the platelets down to a frightening 2, followed by another trip to the ER and then admission to the hospital.
A secondary illness was diagnosed: Immune Thrombocytopenic Purpura (ITP), a blood disorder caused by low platelets. Those thousands of tiny red dots (petechiae) were caused by internally bleeding capillaries, just below the skin surface. Eric's bone marrow is producing platelets, but his spleen sees them as a foreign body and immediately destroys them. The first line of treatment has been several transfusions of immunoglobulin, additional platelets, and mega doses of prednisone. The prednisone is not something that can be given indefinitely so it will be tapered off over the course of a couple of months. The new doctor, a benign hematologist, who is managing the ITP, said Eric's platelets are expected to be in the normal range (150-400) over the next week but are also expected to drop as the prednisone is decreased, although in about 20% of patients they are sustained. As the cancer improves with chemotherapy, so should the ITP. It will just have to be managed by the various lines of available treatments, and the platelets monitored, until then. With a remarkably improved platelet count of 99, Eric was released from the hospital Wednesday, 1/8. He returned to work on 1/9. Under normal circumstances he probably would have taken another day or two off but he started a new job on 12/30 and had only been able to work for two days prior to all these complications. Aside from fatigue and the bloating caused by the prednisone, he feels pretty well physically.
Next up is blood work and getting results on 1/11 beginning at 7 AM.
Maureen
Here's a picture of the lipoma
Following a series of blood tests, a CT scan, and an excruciatingly painful bone marrow biopsy, Eric was presented with a diagnosis of stage IV Chronic Lymphocytic Leukemia/ Small Cell Lymphocytic Lymphoma (CLL/SLL), an incurable but "managrable" blood cancer (chronic). These are two diseases that are treated identically and usually referred to jointly, however, Eric technically has the latter, the lymphoma. Our understanding of "manageable" is that, with treatment, the disease goes into remission but always returns, with the length of those remissions always an unknown: perhaps a year, perhaps two, perhaps more.
Before proceeding with treatment at the local facility where we had been going, we talked it over and decided we should check out M.D. Anderson first. We never looked back. So began another round of diagnostic testing, including a PET/ CT scan and two additional bone marrow biopsies. The results showed several enlarged lymph nodes but, according to the doctor, none that are "exceptionally large" and, best of all, no metastases in any other organs, and no enlargement of the spleen or involvement of the liver. The bone marrow showed about 50% infiltration of disease. Eric was scheduled to begin a 6 month course of chemotherapy, receiving Rituxan and Bendamustine infusions over two day periods every 28 days, with his first treatment on 12/21.
The first day of chemo started out well for about the first 4 hours until the side effects of Rituxin that we had been warned about started to kick in: extreme nausea, uncontrollable chills and trembling, fever, body aches, malaise. The total treatment took about 10 hours or so. Eric ran a fever all night which was scary, but by morning he felt pretty well as we headed back to M. D. Anderson for day two of the treatment (12/22) which consists only of the Bendamustine. The infusion time was much shorter, we were only there a couple of hours, and, best of all, Eric felt pretty normal, even well enough to play golf the next day (12/23).
We were happy to be able to celebrate Christmas, finally. By Christmas night, everyone started dropping like flies with the flu, starting with Jackie. By the 28th, it had hit all of us who had been together for Christmas and not had the flu shot (except Nicole): Jackie, Jessica, Allison, Mark, Joey, and me. With Eric's severely compromised immunity (part of his disease) we made sure he got his flu shot right after his diagnosis but there was still concern that he could catch the flu despite having had the shot. On 12/31 he was feeling achy and tired but didnt seem to have any of the upper respiratory symptoms everyone else had. Late in the day on 1/1, Eric noticed he was breaking out in hives and some sort of rash all over his head, face, and neck. He started taking benadryl but didnt want to go to the ER. The next morning, Thursday, 1/2, it was shocking how horribly it had evolved into a much worse condition with thousands and thousands of tiny red dots covering him. The doctor ordered him to the Anderson ER where he received a blood platelet transfusion because his platelets were down to 8. Instead of coming for the usual Saturday blood work, the doc said to come on Sunday, 1/5, which we did, to find the platelets down to a frightening 2, followed by another trip to the ER and then admission to the hospital.
Here's a picture of the petechiae, the "red dots."
A secondary illness was diagnosed: Immune Thrombocytopenic Purpura (ITP), a blood disorder caused by low platelets. Those thousands of tiny red dots (petechiae) were caused by internally bleeding capillaries, just below the skin surface. Eric's bone marrow is producing platelets, but his spleen sees them as a foreign body and immediately destroys them. The first line of treatment has been several transfusions of immunoglobulin, additional platelets, and mega doses of prednisone. The prednisone is not something that can be given indefinitely so it will be tapered off over the course of a couple of months. The new doctor, a benign hematologist, who is managing the ITP, said Eric's platelets are expected to be in the normal range (150-400) over the next week but are also expected to drop as the prednisone is decreased, although in about 20% of patients they are sustained. As the cancer improves with chemotherapy, so should the ITP. It will just have to be managed by the various lines of available treatments, and the platelets monitored, until then. With a remarkably improved platelet count of 99, Eric was released from the hospital Wednesday, 1/8. He returned to work on 1/9. Under normal circumstances he probably would have taken another day or two off but he started a new job on 12/30 and had only been able to work for two days prior to all these complications. Aside from fatigue and the bloating caused by the prednisone, he feels pretty well physically.
Next up is blood work and getting results on 1/11 beginning at 7 AM.
Maureen
How's Eric Doing?
This is the question that is routinely in my texts, voicemails, emails, FB inbox these days. We've been slow to share the news of Eric's health issues with friends and family because: we wanted to wait until after the holidays, because Eric doesn't want people worrying about him unnecessarily, and because he wanted to wait until he knew more about his disease before talking much about it. Now as more people are learning of his lymphoma diagnosis, the need to share information with family and friends has grown. We agreed that the most efficient and timely way for us to do this would be through a blog. So here it is, aptly titled: How Eric's Doing.
Check in regularly and we'll add information as we have any. We'll keep you updated as often as there are updates.
Thank you all for your prayers, support, emails, and all forms of communication to check on Eric, to offer your support, and to wish him and our family well.
Maureen
Check in regularly and we'll add information as we have any. We'll keep you updated as often as there are updates.
Thank you all for your prayers, support, emails, and all forms of communication to check on Eric, to offer your support, and to wish him and our family well.
Maureen
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