I was double checking the schedule with MD Anderson online Thursday night to be sure we were still scheduled for the usual 7 AM blood draw and was very surprised to see nothing scheduled until the re-staging procedures in March. That's always scheduled by Dr. S (oncology) but I knew Dr. A (hematology/platelet issues) needed results too. He was agreeable to having Eric have his blood drawn at the MD Anderson satellite location that is right near us in Clear Lake so that was a big time saver and much less stressful. Eric had his blood drawn Friday afternoon. I just spoke to Dr. A and the platelets continue to be normal- at 298- this week (150-400 is normal). I guess they'll continue to drop until it's time for another injection of Rominplostom but things are looking good for now. He said the rest of the blood was fine. "Fine" in Eric's case means lots of abnormalities, but nothing surprising given his illness.
Prednisone tapering continues, down another 10 mg to 20 mg daily. It looks like Eric will be done with that in another week or so which is good news. And, for now, he'll be able to get his blood drawn locally on Friday and he can go any time of day he wants. More good news!
Maureen
Monday, February 24, 2014
Tuesday, February 18, 2014
Leaving Comments, Staying Up to Date
As some have noted in email, leaving comments here is not an easy thing to do for many. In lieu of comments, feel free to send an email if you prefer. Links to our email addresses are at the top of the right column of this page. See them? Yup, you got it. :)
There's also a space there where you can enter your email address and you'll be notified whenever there's a post here. That way you don't have to remember to check back in-- you can just come when there's something new.
Thanks to those that are following!
Maureen
There's also a space there where you can enter your email address and you'll be notified whenever there's a post here. That way you don't have to remember to check back in-- you can just come when there's something new.
Thanks to those that are following!
Maureen
Monday, February 17, 2014
Cycle 3, Day 2, the start of the second half of treatment
Eric was feeling pretty lousy Saturday afternoon and evening following his treatment-- feverish with all the symptoms that come with a fever (chills, flushing, aches, etc.) and a great deal of nausea. We really stayed on top of the Tylenol and Zofran so by Sunday morning, he felt pretty well. It would be so much better if he wasn't sick at all, and it's awful how sick he is, but the silver lining is that it's not lasting as long and not as severe as during the past treatments.
We got in early Sunday morning (7:30 am) and were out of there by a little after 10 am. It was nice to not have a whole weekend day taken up with the treatment. Eric was tired so we had a lazy day and he was able to get in some quality nap time! The nausea was gone and his appetite was back so it was a good day. He's on the golf course as I type and that's always a good sign.
Best of all: No more treatments for five weeks!!! We'll go in on Friday for blood work and a quick visit with the APN and, if things go as well as they have been going, it should be a short visit.
Maureen
We got in early Sunday morning (7:30 am) and were out of there by a little after 10 am. It was nice to not have a whole weekend day taken up with the treatment. Eric was tired so we had a lazy day and he was able to get in some quality nap time! The nausea was gone and his appetite was back so it was a good day. He's on the golf course as I type and that's always a good sign.
Best of all: No more treatments for five weeks!!! We'll go in on Friday for blood work and a quick visit with the APN and, if things go as well as they have been going, it should be a short visit.
Maureen
Saturday, February 15, 2014
Chemotherapy Cycle 3, Day 1- The midway point
The full treatment only took about about 4 1/2 hours today of actual drip time so we only had about 6 hours total time at MD Anderson today. What that means is that you get there at your appointment time, check in, wait to get called back to an available room, stop at the "vitals" station to get weighed, and have your temperature and blood pressure taken. Then you're brought to your room which is like a small hospital room. It has a bed, a TV, a reclining chair for your guest, and all the usual things you'd see in a hospital room. You get in the bed and then wait for a nurse to come in. Then they insert an IV line which Eric prefers to have in his hand where, he says, he has the best veins. A bunch of bags are hung on the IV pole including the ever- present-whether-you-need-it-or-not sodium chloride. Pre-medications are administered: oral acetaminophen (Tylenol), IV diphenhydramine (Benadryl), and IV Zofran.
Once that's all done, the treatment medicines are begun through the IV. In Eric's case it begins with the Rituximab which is given in gradually increasing doses: 100 ml, then 200 ml, then 300 ml etc. until the full dose is reached. This was a much slower process initially than it is now. It took about 3- 3 1/2 hours today vs 5 1/2 to 6 hours the first time. After that, the Bendamustine begins and that only takes about 1/2 hour or so. Then the sodium chloride is dripped alone and Eric remains under observation for 30 minutes to an hour. The nurse comes in and disconnects all the lines but Eric has her leave the IV in so he can use it again tomorrow and not have to get stuck twice.
Here's a picture I took of the IV pole today with all the drugs on it. I've been through this before with loved ones, as many of us have, but most have not and, I have learned, some are very curious as to how the chemo is given and what the process is. So that's why I'm a bit more detailed today and wanted to take a picture to share for those who may not know.
Every time Eric has had a treatment, his reaction has been different so we never know what to expect. He might be sick today, he might be sick in two days, he might be fine. So, now we wait and see and go back tomorrow morning at 7:30 for the second dose.
Maureen
Once that's all done, the treatment medicines are begun through the IV. In Eric's case it begins with the Rituximab which is given in gradually increasing doses: 100 ml, then 200 ml, then 300 ml etc. until the full dose is reached. This was a much slower process initially than it is now. It took about 3- 3 1/2 hours today vs 5 1/2 to 6 hours the first time. After that, the Bendamustine begins and that only takes about 1/2 hour or so. Then the sodium chloride is dripped alone and Eric remains under observation for 30 minutes to an hour. The nurse comes in and disconnects all the lines but Eric has her leave the IV in so he can use it again tomorrow and not have to get stuck twice.
Here's a picture I took of the IV pole today with all the drugs on it. I've been through this before with loved ones, as many of us have, but most have not and, I have learned, some are very curious as to how the chemo is given and what the process is. So that's why I'm a bit more detailed today and wanted to take a picture to share for those who may not know.
Every time Eric has had a treatment, his reaction has been different so we never know what to expect. He might be sick today, he might be sick in two days, he might be fine. So, now we wait and see and go back tomorrow morning at 7:30 for the second dose.
Maureen
Wednesday, February 12, 2014
Can we breathe now?
Lots of good news today.
First news from the benign hematologist managing the ITP, Dr. A, and the ever changing platelets: Crazy high platelets are now over 600 (150 to 400 normal), but it's all good. That means we don't have to go back on Friday for the Romiplostim; the Prednisone comes down another 10 mg to 30 mg daily starting on Friday; no need to repeat blood work until next Friday, 2/21. All this good news and it was still only 8:30!
Next came the visit with Dr. S, (lymphoma/oncology) which also went well except for the frustrating, and unreasonably long wait time-- an hour and a half in the exam room? We had an 8:30 appointment but didn't see him until 10:20. Can you imagine how far behind this guy must be by 2:00? Kidney function looks great. Liver function looks great. Blood looks good and much better than previously. White blood count is normal-- first time since we started this process three months ago. Platelets, again, look good. Other indicators in blood work tell the doctor that it looks like Eric is doing well and responding to the chemo and Rituximab although it is really the PET scan that will tell us that for sure. Eric in good shape to have his treatment this weekend.
Eric's blood pressure has been very high (160/95) and we've been concerned, although it was actually normal today for the first time in quite some time. Dr. S said not to worry about the BP: the nature of what Eric goes through while he's there, the treatments, the stress will cause elevated BP (Interestingly, today's normal reading was after the good news from Dr. A.) That was a relief. We were also concerned about Eric's continued shortness of breath and anxiety-- also normal because of the extreme stress. As the doctor pointed out, this is stressful for anyone; add all these complications Eric has had and that stress level is going to go up even more. Tapering off on the Prednisone should also help along with really focusing on relaxing and trying to feel as well as you can in the face of what you're dealing with.
The last CT scan showed enlargement of one of the affected lymph nodes identified on the previous PET scan. This is not uncommon and highly unlikely to be indicative of growing cancer, more likely to be indicative of many cells congregating (for lack of a better word) to kill the cancer cells in that lymph node, but we'll get a better look when the PET is repeated next month. After the chemo this weekend, Eric is halfway through. The PET scan is done after the 3rd, but before the 4th, (of 6) chemo cycle to see how the disease is responding and to re-stage it.
We were not entirely surprised when Eric has been sick immediately following, or even during, his treatments, but we were perplexed when he would start running a fever 24 hours or later after the treatment. Dr. S says this is indicative of the pre-meds, Acetaminophen and Benadryl, given via IV prior to each treatment, wearing off. It should help Eric stave off the fever and sick feeling if he continues to take these drugs by mouth in the day or two following his treatments. If that's true and it works, that's going to be fantastic. We'll see what happens early next week after the treatment this weekend.
Eric has to travel for work the week of 3/9 to 3/14 and would have his next chemo on 3/15. Well, there are two problems here. He has to see Dr. S always the Wednesday before his treatment, and he has to have his PET scan the week before his March treatment. They won't do them the previous week and they are really sticklers for changing things like this but there really is no other option. Dr. S said, given how well Eric is now doing, it is not a problem to postpone the March treatment by an additional week. That was a huge relief, too! So, the PET is scheduled for 3/18 and the next follow up with Dr. S is 3/19. A great deal of genetic testing was done when Eric's disease was first diagnosed and, while we have access to the reports, we have no idea what they mean. We do know that these reports tell the doctors how a patient might respond to different treatments and they help identify certain prognosis factors. When we go see Dr. S for the PET results on 3/19, he'll go over all that with us as well.
In the meantime, we'll still be going on Friday mornings for blood work and visit with the APN (Advanced Nurse Practitioner). We are really looking forward to when we can stop that. It's not the blood work but the APN visit we'd like to stop. There's an MD Anderson satellite location right near us where Eric can have his blood drawn. It's the visit with the APN that requires our driving in rush hour ever Friday morning into the Medical Center. This has been very important. For so many weeks, those visits were what sent Eric to so many different treatments, the ER, and hospital admission. As things become more stable, hopefully those visits will no longer be needed and Eric can just get his blood drawn near home every week and continue on his way to work. That would be nice!
As we were leaving MD Anderson today, we were very uplifted by all this news on how much things are improving. We were also very mindful of what a crazy past three months this has been. It's been so scary and overwhelming which makes us appreciate even more how much better things seem to be getting now. We're feeling good about the future and, although we hate to wish the days away, we do look forward to May when the last of these 6 treatments will be completed and we will hear the words: "your cancer is in remission."
So, it's a chemo weekend, all day Saturday and a few hours on Sunday. By Tuesday we'll know if Eric gets through this without getting sick. Bloodwork next Friday.We will get to celebrate on 28th anniversary on 2/22 which will be Eric's first Saturday "off" since the first week of December.
Thank you for all the prayers and good wishes!
First news from the benign hematologist managing the ITP, Dr. A, and the ever changing platelets: Crazy high platelets are now over 600 (150 to 400 normal), but it's all good. That means we don't have to go back on Friday for the Romiplostim; the Prednisone comes down another 10 mg to 30 mg daily starting on Friday; no need to repeat blood work until next Friday, 2/21. All this good news and it was still only 8:30!
Next came the visit with Dr. S, (lymphoma/oncology) which also went well except for the frustrating, and unreasonably long wait time-- an hour and a half in the exam room? We had an 8:30 appointment but didn't see him until 10:20. Can you imagine how far behind this guy must be by 2:00? Kidney function looks great. Liver function looks great. Blood looks good and much better than previously. White blood count is normal-- first time since we started this process three months ago. Platelets, again, look good. Other indicators in blood work tell the doctor that it looks like Eric is doing well and responding to the chemo and Rituximab although it is really the PET scan that will tell us that for sure. Eric in good shape to have his treatment this weekend.
Eric's blood pressure has been very high (160/95) and we've been concerned, although it was actually normal today for the first time in quite some time. Dr. S said not to worry about the BP: the nature of what Eric goes through while he's there, the treatments, the stress will cause elevated BP (Interestingly, today's normal reading was after the good news from Dr. A.) That was a relief. We were also concerned about Eric's continued shortness of breath and anxiety-- also normal because of the extreme stress. As the doctor pointed out, this is stressful for anyone; add all these complications Eric has had and that stress level is going to go up even more. Tapering off on the Prednisone should also help along with really focusing on relaxing and trying to feel as well as you can in the face of what you're dealing with.
The last CT scan showed enlargement of one of the affected lymph nodes identified on the previous PET scan. This is not uncommon and highly unlikely to be indicative of growing cancer, more likely to be indicative of many cells congregating (for lack of a better word) to kill the cancer cells in that lymph node, but we'll get a better look when the PET is repeated next month. After the chemo this weekend, Eric is halfway through. The PET scan is done after the 3rd, but before the 4th, (of 6) chemo cycle to see how the disease is responding and to re-stage it.
We were not entirely surprised when Eric has been sick immediately following, or even during, his treatments, but we were perplexed when he would start running a fever 24 hours or later after the treatment. Dr. S says this is indicative of the pre-meds, Acetaminophen and Benadryl, given via IV prior to each treatment, wearing off. It should help Eric stave off the fever and sick feeling if he continues to take these drugs by mouth in the day or two following his treatments. If that's true and it works, that's going to be fantastic. We'll see what happens early next week after the treatment this weekend.
Eric has to travel for work the week of 3/9 to 3/14 and would have his next chemo on 3/15. Well, there are two problems here. He has to see Dr. S always the Wednesday before his treatment, and he has to have his PET scan the week before his March treatment. They won't do them the previous week and they are really sticklers for changing things like this but there really is no other option. Dr. S said, given how well Eric is now doing, it is not a problem to postpone the March treatment by an additional week. That was a huge relief, too! So, the PET is scheduled for 3/18 and the next follow up with Dr. S is 3/19. A great deal of genetic testing was done when Eric's disease was first diagnosed and, while we have access to the reports, we have no idea what they mean. We do know that these reports tell the doctors how a patient might respond to different treatments and they help identify certain prognosis factors. When we go see Dr. S for the PET results on 3/19, he'll go over all that with us as well.
In the meantime, we'll still be going on Friday mornings for blood work and visit with the APN (Advanced Nurse Practitioner). We are really looking forward to when we can stop that. It's not the blood work but the APN visit we'd like to stop. There's an MD Anderson satellite location right near us where Eric can have his blood drawn. It's the visit with the APN that requires our driving in rush hour ever Friday morning into the Medical Center. This has been very important. For so many weeks, those visits were what sent Eric to so many different treatments, the ER, and hospital admission. As things become more stable, hopefully those visits will no longer be needed and Eric can just get his blood drawn near home every week and continue on his way to work. That would be nice!
As we were leaving MD Anderson today, we were very uplifted by all this news on how much things are improving. We were also very mindful of what a crazy past three months this has been. It's been so scary and overwhelming which makes us appreciate even more how much better things seem to be getting now. We're feeling good about the future and, although we hate to wish the days away, we do look forward to May when the last of these 6 treatments will be completed and we will hear the words: "your cancer is in remission."
So, it's a chemo weekend, all day Saturday and a few hours on Sunday. By Tuesday we'll know if Eric gets through this without getting sick. Bloodwork next Friday.We will get to celebrate on 28th anniversary on 2/22 which will be Eric's first Saturday "off" since the first week of December.
Thank you for all the prayers and good wishes!
Monday, February 10, 2014
Out of the woods
It is always a game of wait and see after the Rituxan (Rituximab). Eric might feel well leaving the treatment and for hours after, but the the next day or the day after (or both) he's sick- like last week. Having now made it through Sunday and Monday with no signs of being sick, it seems safe to say Eric is just going to continue to feel well this week.
Dr. A ( ITP doctor/benign hematology) had some good news for Eric today. This past Saturday will be the last weekly Rituximab treatment. (Monthly chemo will continue). When Eric gets his blood work done on Wednesday of this week [when we see Dr. S (lymphoma)], Dr. A will take a look at the platelets to see if there's any other treatment needed at this time for the ITP.
All that's on the schedule for now: Wednesday- blood work and visit with Dr. S; Saturday and Sunday-- chemo. We are so hoping Eric won't get sick from the chemo this time.
We'll keep you posted after the Wednesday appointments.
Maureen
Dr. A ( ITP doctor/benign hematology) had some good news for Eric today. This past Saturday will be the last weekly Rituximab treatment. (Monthly chemo will continue). When Eric gets his blood work done on Wednesday of this week [when we see Dr. S (lymphoma)], Dr. A will take a look at the platelets to see if there's any other treatment needed at this time for the ITP.
All that's on the schedule for now: Wednesday- blood work and visit with Dr. S; Saturday and Sunday-- chemo. We are so hoping Eric won't get sick from the chemo this time.
We'll keep you posted after the Wednesday appointments.
Maureen
Friday, February 7, 2014
Platelets are what???
449! Yup, that's the platelet count today. That's actually slightly above the high end of normal (400), but normal enough. After again running a fever and feeling ill on Sunday and Monday, following last Saturday's Rituxan, Eric has felt exceptionally well this week. Heading in for blood work this morning he had a good feeling because he's felt so much better-- and it seems with good reason.
That good news brings a few changes in treatment. The Romiplostom injection was cancelled for today since it has obviously worked quite well already. The Prednisone will be cut back an additional 10 mg daily, now down to 40 mg from the original 60. It will be cut by 10 mg weekly each Saturday until completely stopped. The weekly Rituxan will continue as scheduled tomorrow.
Blood work will be done again on Wednesday, 2/12, at which time we'll see if the high level of platelets is being sustained. Dr. A will be looking to determine if it's the Rituxan or the Romiplostom-- or both-- that's responsible for the increased platelets so he can continue to treat the ITP accordingly.
Eric also has his monthly visit with his lymphoma doctor, Dr. S., on Wednesday. At that time we'll talk about scheduling another PET scan and bone marrow biopsy to have the disease re-staged and to see how it's responding to treatment. While the schedule usually goes out for a month to six weeks, there's nothing else on it (except the monthly chemo treatments through May) until Eric is seen by Dr. S. The next chemo is next Saturday, 2/15.
Thankful for a good news day!
Maureen
That good news brings a few changes in treatment. The Romiplostom injection was cancelled for today since it has obviously worked quite well already. The Prednisone will be cut back an additional 10 mg daily, now down to 40 mg from the original 60. It will be cut by 10 mg weekly each Saturday until completely stopped. The weekly Rituxan will continue as scheduled tomorrow.
Blood work will be done again on Wednesday, 2/12, at which time we'll see if the high level of platelets is being sustained. Dr. A will be looking to determine if it's the Rituxan or the Romiplostom-- or both-- that's responsible for the increased platelets so he can continue to treat the ITP accordingly.
Eric also has his monthly visit with his lymphoma doctor, Dr. S., on Wednesday. At that time we'll talk about scheduling another PET scan and bone marrow biopsy to have the disease re-staged and to see how it's responding to treatment. While the schedule usually goes out for a month to six weeks, there's nothing else on it (except the monthly chemo treatments through May) until Eric is seen by Dr. S. The next chemo is next Saturday, 2/15.
Thankful for a good news day!
Maureen
Saturday, February 1, 2014
No news is good news
Beginning day one of tapering off the Prednisone as ordered by Dr. A yesterday afternoon. Arrived at MD Anderson at 9:30 this morning for the Rituxan IV. We were out of there by 1. All's well. I love boring posts!
Maureen
Maureen
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