The words we longed to hear

Remission!!! That is what Dr. S. shared with us today. Eric's cancer is in remission. It's been such a battle that you almost can't wrap your mind around this amazing news, but there it is. It's going to take a while for it to sink in that coming to MD Anderson so regularly will no longer be part of our regular routine. Eric will come back in September for a PET scan, as he will do every 3 months for the next year. Then it's every 6 months and then annually.

We, again, can not thank you all enough for the love, support, and prayers that have brought Eric through this. Our love and thanks to all.

Maureen

EDIT: 8/4/14 There are some who read this blog regularly who seemed to not know Eric was in remission. I just discovered this post was sitting in the "drafts" folder and never published when it was written so there indeed are people who haven't heard this great news, until now. So sorry! 

Restaging

Tomorrow Eric has his PET and CT scans and his bone marrow biopsy. It's going to be a long day with the first appointment at 7:30 am and the last one finishing about 5:00 pm (we hope!). Although the results are all ready within three days, the best we could coordinate with Eric's schedule is to see the doctor next Wednesday to get the results. Pray, pray, pray!!! There is only one thing we want to hear next week and that is "remission." I can't even think of hearing anything else!

Eric, again, wants everyone to know how much it means to him to have so many people following this blog and praying for him, for the cards, the masses, the gifts, the books, and the endless good wishes. It's been incredibly moving and we're both overwhelmed by the love and support we've gotten from everyone. So, from both of us, THANK YOU!

Maureen

Ringing the Bell

I noticed this bell the first day Eric went for his chemotherapy and I wondered how people must feel when they get to ring it.

 

I can't even look at it without crying.  It's really hit me the past couple of days and I can't believe the time for Eric to ring the bell has finally come. After an unexpectedly difficult round of chemo this weekend, here's Eric leaving the chemo area today. Sorry for the blurry pictures. As I said, I was pretty emotional and my camera skills clearly weren't the best. 

After arriving home today to the hero's welcome he deserves, he's sleeping comfortably. It's been a far more difficult final treatment weekend than we ever would have imagined. Knowing it's the last one helps, though. Hoping the new prescriptions help with the nausea and sickness, and help him get his appetite back soon.

Thank you from both Eric and me for all of the prayers and support. We'll have final results of all the follow- up tests in about 4 weeks.

Maureen

It's finally here: chemo round six

Eric's blood work continues to be favorable. Yesterday, Dr. S. (oncology), said he feels certain that the ITP, which caused so much stress and worry in the early stages, is probably gone now. The weekly and bi-weekly blood work seems to evidence this with platelet counts now consistently in the higher range of normal at around 300 or so, normal being 100-400. So that's great news but we'll ask Dr. A., the benign hematologist, to confirm that and to see if the bi-weekly blood work can now be stopped. It will still be done prior to chemo and again in about 4 weeks.

So, this is where we are. Eric's chemo protocol is a six month treatment, with this Saturday and Sunday being the sixth treatment. The only consolation to the dread Eric is feeling is that this is expected to be the last treatment. Let me explain that qualifier "expected to be." In three weeks, Eric will have a bone marrow biopsy (a very painful procedure he's had done twice) and a PET scan. The last PET scan indicated little to no visible cancer in the lymph nodes. It can not analyze the bone marrow, however, which, in Eric's case, was greatly infiltrated with cancer at the beginning. The bone marrow biopsy is what is going to tell us if Eric is in remission or not. We are, of course, extremely hopeful and anticipating hearing the news, in 4 weeks. that the cancer is in remission. If we do not hear those words, additional treatment will be in the works. We don't even want to think of that possibility but we can't bury our heads in the sand, either.

Early on, Eric gained a lot of weight due to the steroids. He has since last all that weight and then some. Of course, he's glad to have the weight off, but it comes a result of persistent nausea that lasts for about 3 weeks now following the chemo. The medications have not helped very much. New ones are being prescribed one of which is only available at MD Anderson. Interestingly, it's called ABH, and is a combination of Ativan, Benadryl, and Haldol-- hardly drugs we would expect to treat nausea, but MD Anderson has lots of remedies you won't fine anywhere else. We'll pick that up Saturday and hope for the best.

Please keep the prayers, good wishes, and good thoughts and support coming. This battle is almost over!

Maureen

Post Round Five of Chemo

I wanted to wait a few days to see how Eric did before updating on this past weekend's chemo because we're never entirely sure how he's doing until several days past the treatment. This week went better than expected, in part because he was expecting it to be bad because last month so was tough. The treatment process was fine, followed by several days of nausea, weakness, tiredness, lack of appetite.

Eric hasn't been able to eat much at all. He has slept a lot- long 5 and 6 hour "naps". Yesterday he finally felt his appetite coming back and ate a meal for the first time since Friday. Taking all that Prednisone earlier in the treatment process caused quite a weight gain which has now all been lost and then some. He's at a healthy weight and, hopefully, will continue to have enough of an appetite to keep him from losing any more.

Aside from interim blood work, next on the calendar is the pre-chemo visit with Dr. S on 5/14, followed by the sixth (and hopefully, final) round of chemo on 5/17 and 5/18.

Thanks for checking in and thanks for the prayers, cards, and good wishes!

Maureen

Dreading the Inevitable but Necessary

Everything went well at the doctor today. Blood counts look good, platelets continue to be just above 300. Eric just has to keep taking the new meds and trying to stay ahead of the nausea. It's been such a rough month with this nausea that Eric says he gags when he thinks of going for the chemo. He's really dreading this weekend. Let's face it. He sure never looks forward to going, but he doesn't usually face it with such dread.

Maybe, just maybe, it won't be so bad this time. Each time has been different and you never know what to expect. Here's to hoping for the best! Saturday's appointment is at 7:30 AM and should take about 6 hours, once they get started. It sure would be nice to start on time.  Sunday's treatment is only about an hour and a half or so and should be around that same time. It's generally about 24 hours after they start on Saturday. I'll keep you posted.

Maureen

Getting Ready for Round Five

With Eric's blood work being done every two weeks now, and the platelets finally and continually stabilized at normal levels (376 last week), the only concerns remaining are the gastrointestinal problems which have not diminished since the last chemo, nearly four weeks ago. The Zofran (anti nausea) and over the counter histamine blockers (Pepsid, Zantac, etc.) have not provided significant relief for more than an hour or so. Dr. S. changed the medications to Compazine (anti nausea) and something else for protecting the stomach, stronger than the OTC medications (forget the name), but still not much improvement.

Eric normally sees Dr. S. the Wednesday before his chemo, the only day Dr. S sees patients, and that would be today since chemo is this weekend. Eric had to be out of town for work today, so we made arrangements for him to be seen by Dr. S's associate, Dr. O,  tomorrow instead. Hopefully we can get some better understanding and control of these GI issues before the chemo this weekend or it could be a rough week or so on the horizon.

Maureen

On the schedule

Things have been fairly quiet. The last round of chemo took a greater toll than usual on Eric's stomach, resulting in over a week of battling nausea, stomach upset, and a diminished appetite. Everything else is fine, though.

Bi-weekly blood work (CBC) is this Friday. Monthly appointment with the oncologist is scheduled for 4/17. Next chemo is 4/19 and 4/20 (Easter).

We're a bit disappointed that we won't get to celebrate Easter with our family but, on the bright side, there is only one more treatment after this one, tentatively planned for May 10.

Maureen

Things are getting better all the time

Despite our annoyance at having to wait three hours past our appointment time to get set up in the chemo room on Saturday, things went reasonably well. During Saturday's treatment of both Rituximab and Bendamustine, Eric started feeling nauseous which continued through the night along with the usual flu-like symptoms. They were bit milder than in the past, plus, knowing that it is not going to last for a very long time makes it a bit more tolerable for Eric. Yesterday was Bendamustine only which meant more nausea all day and not eating. By about 8 PM, Eric was able to eat a banana and keep it down. By this morning, Monday, he felt fine and went to work. He'll probably be fatigued this week but it seems the worst is behind us. Only two more treatments left! The next one is 4/12.

Maureen

He said what?

Dr. S said the PET scan shows no visible signs of lymphoma! The cancer has responded so well to the treatment that it is now shrunk to the point of not being visible on a PET scan anymore. He cautioned that this doesn't mean it's gone, but it's going in the right direction and showing us that they're using the right chemo drugs and that Eric is responding great to the treatment. The enlarged lymph nodes are no longer there. He has three more rounds of chemo which should conclude at the end of May. At that time they'll do a bone marrow biopsy which will be much more conclusive than the PET scan. This is all GREAT news and we are so happy! Dr. S also agreed to no more weekly visits which means Eric just has to go get his blood drawn locally every two weeks as Dr. A has ordered. Piece of cake!

Next on the schedule: Chemo this weekend, Saturday and Sunday. We so hope these will get easier and that Eric won't feel any effects but, knowing it's working and it'll be over in two more months sure makes it all a lot easier to deal with.

Thank you to the prayer patrol, the well wishers, our families, friends we have met, and new friends we have never met, especially the prayer group and individuals from Old St. Pat's Church in Chicago. Keep those prayers coming!

Maureen

Mini Update

It's only been a few days, but Eric's platelets continue to hold steady at right about 300 per today's blood work. With that, Dr. A says no more weekly blood work needed (unless the oncologist, Dr. S wants it, which we'll find out tomorrow). Now blood work only needs to be done every two weeks. Things keep looking up! (As a reminder, Dr. A is the benign hematologist who is managing the TCP which has been the cause of the low platelet issue.)

Maureen

Big Day

Eric's blood count continues to look good with his platelets just above 300 this past Friday and he's now off the Prednisone. Today he gets blood work and his restaging PET scan with the first appointment of the day at 11:00. The PET scan will tell us if the chemo is working. It will be compared to the previous scan done in December and we'll find out if things are better, worse, or the same as previously. Of course, we're hoping for the former. We'll visit with Dr. S. tomorrow to get the results tomorrow.  That's a 10:00 appointment.

If Eric's appearance and physical condition are any indication, he seems to be doing excellent and he feels great. You would not have the slightest clue, if you saw him, that he is battling cancer. He hasn't lost his hair, he's maintained his weight, and he's as handsome as ever.

Maureen

All Good. Still.

Platelets 360 this week. Everything looks good. Almost off Prednisone, too. Now one tab (10 mg) every other day. Eric will be traveling for work this week and it seems like a miracle that he is well enough to be living pretty normally right now. March 18 is the big testing day and March 19 is results day. We'll finally get to find out how the cancer is responding to the treatment. Blood work again next Friday. It is so nice to be able to do this close to home!

Thanks for all the prayer and we hope you'll keep them coming.

Maureen

Short report

Blood work this past Friday showed platelets even higher, still in the normal range at 326. Everything else is good. Blood draw again on Friday.

Maureen

A Change in the Routine

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

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

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

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

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!

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

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

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

Things are looking up

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

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

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

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

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

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

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

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

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.

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