Treatment on Halloween, 10/31, went well and the wait was shorter than usual which is always a miracle. That means one more treatment in the chemo room 11/27, the day before Thanksgiving. New scans will be done in December. Labs all still look good for a guy with lymphoma. The treatment will continue through June which throws a monkey wrench into things.
The one drug Eric will continue to take costs $11,300/ mo. Under our current insurance through his employer, we have a $6000 annual out of pocket so we will have to cough that up right off the bat in January which is quite a bitter pill to swallow, no pun intended. But after that, insurance will cover it for the duration.
Eric will be 65 on 12//6 and is eligible for Medicare but even with prescription drug coverage and the supplement, our cost is so expensive, we'd be out of pocket more than $6000. So, Eric will have to continue working to continue the insurance to pay for this drug. How 'bout that? Not a pleasant topic for us, as you can imagine.
But we count our blessings and among those are that this treatment seems to be working. We will look forward to the result of the scans in December. Til then....
Maureen
Monday, 11 November 2019
Thursday, 17 October 2019
Catching up
My apologies for the lack of updates. When I last wrote, we were getting ready to go on our cruise which we were thrilled and very surprised that the doctor released Eric to go. As our trip was concluding and we were making our way back to port on Friday for our Sunday arrival in Fort Lauderdale, Eric received news that his Dad had fallen, suffered a head injury, and was in the hospital. On Saturday he was moved to hospice. We rushed against all odds to get an earlier flight home on Sunday, pulled it off, and Eric was able to get to be with his Dad Sunday and Monday. His Dad passed away on Tuesday. So it's been a whirlwind to say the least.
As for Eric's health, his labs continue to show great results and an excellent response to the treatment. He received his infusion treatment on 10/3 and continues taking the very costly Venetoclax ($11,300/ month) daily and will do so through June. We are not looking forward to starting a new year of deductibles and co-pays beginning January 1, when we will have to pay the full $6000 out of pocket for the first refill of the year. For those who might wonder, the cost of treatment is about $30,000/ month. We're thankful we have insurance even though we are still on the hook for $6000/year in addition to our premiums.
Eric's next treatment is October 31 and we are coming to the end of the 6 courses of the infusions. The last one will be around Thanksgiving. He will have followup scans in November or December that will allow us to see how everything is looking from the inside.
Thank you to our friends and family who read these updates and who ask about Eric's health and pray for him.
Maureen
As for Eric's health, his labs continue to show great results and an excellent response to the treatment. He received his infusion treatment on 10/3 and continues taking the very costly Venetoclax ($11,300/ month) daily and will do so through June. We are not looking forward to starting a new year of deductibles and co-pays beginning January 1, when we will have to pay the full $6000 out of pocket for the first refill of the year. For those who might wonder, the cost of treatment is about $30,000/ month. We're thankful we have insurance even though we are still on the hook for $6000/year in addition to our premiums.
Eric's next treatment is October 31 and we are coming to the end of the 6 courses of the infusions. The last one will be around Thanksgiving. He will have followup scans in November or December that will allow us to see how everything is looking from the inside.
Thank you to our friends and family who read these updates and who ask about Eric's health and pray for him.
Maureen
Saturday, 31 August 2019
8/30 Results
Well, this is quite a different ride from last time. Eric's labs now show all of his counts to be NORMAL. Can you believe it? Platelets are 240. 240!!! (If you need a recap, they started at 16 in June. Normal is 140-450. )
Ramping up of Venetoclax is still going well with no negative side effects. Full dosing will be completed by next Sunday, 9/8. (The day we leave for our cruise-- which we still can't believe we're getting to do!)
Treatment this Thursday and follow up with Dr. S on Wednesday. We're not expecting any surprises-- just continued good news.
Thanks to all for the prayers and keeping up. This feels miraculous to have such a positive result so quickly with so few side effects other than fatigue.
Maureen
Ramping up of Venetoclax is still going well with no negative side effects. Full dosing will be completed by next Sunday, 9/8. (The day we leave for our cruise-- which we still can't believe we're getting to do!)
Treatment this Thursday and follow up with Dr. S on Wednesday. We're not expecting any surprises-- just continued good news.
Thanks to all for the prayers and keeping up. This feels miraculous to have such a positive result so quickly with so few side effects other than fatigue.
Maureen
Tuesday, 20 August 2019
Results from 8/15
I'm a little behind in updating and the latest news from the lab results is pretty miraculous: platelets are NORMAL! (140). All other numbers still looking great, all still showing improvement with many already back to normal. Venetoclax seems to be agreeing with Eric. He finished the first week and began the ramped up (increase dosage) second week and everything seems fine so far.
It's pretty amazing how effective this treatment has been so far and how well Eric has been feeling. This is nothing like the last go round. We just hope the end result is as good-- all indications are that it will be.
Labs and FastTrack visit this Thursday and next. Then treatment on 9/5.
Maureen
It's pretty amazing how effective this treatment has been so far and how well Eric has been feeling. This is nothing like the last go round. We just hope the end result is as good-- all indications are that it will be.
Labs and FastTrack visit this Thursday and next. Then treatment on 9/5.
Maureen
Sunday, 11 August 2019
Treatment Cycle 2 of 6, labs, Dr. visit
This past Thursday was full of good news. Labs continue to show now steady platelets, still below normal, but excellent as far as progress and reducing the fear and anxiety that came with the initial labs. Dr. S said Eric is doing much better than they expected in terms of his labs and his response to the treatment. He has now begun the second drug, venetoclax, an oral drug to be taken daily for a year. The biggest concern here, and it’s a very large concern, is kidney function. The drug comes with a requirement to drink 56 oz. of water a day to keep hydrated, to keep the kidneys functioning, and to avoid dialysis. Because of the potentecy and the potential side effects, the dosage is ramped up every week until the full dosage amount begins in the fourth week and that’s where it will remain for the following 11 months, assuming kidney function remains good.
We have had a cruise booked for almost a year and it sails September 8. The PA and doctor had indicated they didn’t think they’d be able to clear Eric for travel and to be away from the clinic for 8 days but that we would have to see how things went. To our delight and amazement, the doctor gave the all clear for us to go. He said Eric is doing so well with his treatment, he expects he will respond well to the venetoclax and is willing to forego doing labs and follow up during that time. So, if all goes well with the venetoclax during this ramp up period, we are going on the cruise.
Other good news is that now the infusions are monthly so we don’t go back for that until 9/5, right before the cruise. Blood work/labs and follow up with the PA at Fast track will still be weekly but only for the next 4 weeks until the venetoclax is fully ramped. Then the bloodwork and Fast Track will be monthly. So, just four more weeks of going weekly, then everything is monthly except the daily pills.
It’s pretty amazing how much better the treatment is than it was five years ago as far as tolerance. Hopefully, it will be as effective and even more effective than five years ago, also.
Maureen
We have had a cruise booked for almost a year and it sails September 8. The PA and doctor had indicated they didn’t think they’d be able to clear Eric for travel and to be away from the clinic for 8 days but that we would have to see how things went. To our delight and amazement, the doctor gave the all clear for us to go. He said Eric is doing so well with his treatment, he expects he will respond well to the venetoclax and is willing to forego doing labs and follow up during that time. So, if all goes well with the venetoclax during this ramp up period, we are going on the cruise.
Other good news is that now the infusions are monthly so we don’t go back for that until 9/5, right before the cruise. Blood work/labs and follow up with the PA at Fast track will still be weekly but only for the next 4 weeks until the venetoclax is fully ramped. Then the bloodwork and Fast Track will be monthly. So, just four more weeks of going weekly, then everything is monthly except the daily pills.
It’s pretty amazing how much better the treatment is than it was five years ago as far as tolerance. Hopefully, it will be as effective and even more effective than five years ago, also.
Maureen
Friday, 2 August 2019
Weekly follow up 8/2
All good news today. Labs all looked good. Platelets still heading in the right direction. Kidney and liver function both normal. Hydration seems a lot better.
Next follow up on Thursday, 8/8. That’s a big day: labs, visit with oncologist to get some sense of what’s next, new drug starting which will be taken for a year as part of treatment, and then treatment again which begins cycle 2 of 6.
Just an FYI- the treatments are systemically referred to as chemotherapy (like Kleenex, or Xerox). Even on Eric’s appointments, they’re shown as chemotherapy. Treatment has changed and for many, the drugs now administered are not technically chemotherapy drugs, they’re immunotherapy drugs. Both of the “chemo” drugs Eric is getting are technically immunotherapy drugs. So I try to refrain from saying chemo but the process is the same, the drugs are just different. When I refer to “treatment”, I’m referring to what you would normally think of as chemo.
Maureen
Next follow up on Thursday, 8/8. That’s a big day: labs, visit with oncologist to get some sense of what’s next, new drug starting which will be taken for a year as part of treatment, and then treatment again which begins cycle 2 of 6.
Just an FYI- the treatments are systemically referred to as chemotherapy (like Kleenex, or Xerox). Even on Eric’s appointments, they’re shown as chemotherapy. Treatment has changed and for many, the drugs now administered are not technically chemotherapy drugs, they’re immunotherapy drugs. Both of the “chemo” drugs Eric is getting are technically immunotherapy drugs. So I try to refrain from saying chemo but the process is the same, the drugs are just different. When I refer to “treatment”, I’m referring to what you would normally think of as chemo.
Maureen
Sunday, 28 July 2019
Treatment 4
Amazingly, the treatment is already showing positive results. Platelets continue to climb and are now up to 120-- almost in the normal range, and especially good for a leukemia/lymphoma patient. White blood cell components are all improving. Kidney function still a bit off but it's a side effect of the medication. As the drugs target the cancer cells, they (the cancer cells) essentially explode, putting stress on the kidneys to get rid of them. Staying hydrated remains very important and a prescription was given to help.
The next treatment is in two weeks, on August 8, which becomes Day 1 of Cycle 2 for the obinutuzumab which will repeat, then, once every 28 days for a total of 6 cycles. The most pronounced side effect seems to be fatigue which is remedied s with naps.
As Cycle 2 begins, the second drug, Venetoclax, will be introduced. It's our understanding this is a daily pill which is taken for a year but we will get clarification when we see the oncologist, Dr. S, on 8/8.
Other good news is that Eric doesn't have to continue twice weekly blood work/labs followed by Fast Track appointments. Those will be once weekly now. That may not seem like much, but when you add in the driving time, waiting for the lab results, and the appointment, these things take about 4-5 hours. So getting to do it weekly is a big time-saver.
Maureen
The next treatment is in two weeks, on August 8, which becomes Day 1 of Cycle 2 for the obinutuzumab which will repeat, then, once every 28 days for a total of 6 cycles. The most pronounced side effect seems to be fatigue which is remedied s with naps.
As Cycle 2 begins, the second drug, Venetoclax, will be introduced. It's our understanding this is a daily pill which is taken for a year but we will get clarification when we see the oncologist, Dr. S, on 8/8.
Other good news is that Eric doesn't have to continue twice weekly blood work/labs followed by Fast Track appointments. Those will be once weekly now. That may not seem like much, but when you add in the driving time, waiting for the lab results, and the appointment, these things take about 4-5 hours. So getting to do it weekly is a big time-saver.
Maureen
Thursday, 25 July 2019
Mid week follow up July 23
Twice a week, Eric has blood work done and then what they call a "Fast Track" appointment where a Nurse Practitioner reviews the results and checks to see how he's doing. On Tuesday, the results were quite good. Kidney function back to normal and platelets up to 80, quite a big jump. So, all good news there.
Tomorrow, is another treatment as well as Fast Track and blood draw. There's a two week break on the treatments after this so the next one will be August 8.
Maureen
Tomorrow, is another treatment as well as Fast Track and blood draw. There's a two week break on the treatments after this so the next one will be August 8.
Maureen
Friday, 19 July 2019
Treatment 3
We visited with the nurse practitioner. Blood work all pretty stable. Platelets at 25 so somewhat stable although very low. As one nurse told us, for most people, that’s a shockingly low number but for leukemia and lymphoma patients, it’s expected. There was a little concern about kidney function and Eric was told to really stay hydrated. Treatment followed. No delays today. Everything seems fine. Last treatment was followed by a couple of days of being extremely tired and some dizziness, but lots of sleep seemed to take care of it.
There is more bloodwork and a visit with the nurse practitioner (NP) on Tuesday, followed by bloodwork and treatment again next Friday. Then two weeks off except for the weekly blood and visits with the NP. Doctor visit on 8/8 and I think that’s when the second drug will begin.
Maureen
There is more bloodwork and a visit with the nurse practitioner (NP) on Tuesday, followed by bloodwork and treatment again next Friday. Then two weeks off except for the weekly blood and visits with the NP. Doctor visit on 8/8 and I think that’s when the second drug will begin.
Maureen
Saturday, 13 July 2019
Treatment Day 2
Per usual, we arrived in time for the 8 am appointment, and were called back at 9:30. We had a very nice lady check us in and when she saw how long the treatment was going to be, she made a point to get us a larger more comfortable room which we both appreciated. Infusion just finished a few minutes ago and, thankfully, Eric seems to have no negative reaction. They keep him for an hour observation afterwards so we are in that hour now and hope to be out of here by 4:15.
Since he is doing well, it looks like we will be heading to Wimberley tomorrow, as we had planned. We will get home Thursday, go for bloodwork, and be back here Friday. Keep praying Eric continues to feel as well as he does so far. 🙏
Maureen
Since he is doing well, it looks like we will be heading to Wimberley tomorrow, as we had planned. We will get home Thursday, go for bloodwork, and be back here Friday. Keep praying Eric continues to feel as well as he does so far. 🙏
Maureen
Friday, 12 July 2019
Treatment Day 1
Platelets were, surprisingly, up a bit so no platelet transfusion today. MD Anderson is without a doubt the worst place on the planet for disrespecting people's time. Over 2 hours waiting for an appointment that was supposed to be at 10:45 AM. Process went fine with no adverse reactions other than high blood pressure which seemed to be freaking everyone out. After speaking with the doctor, they chalked it up to a reaction to the steroid they were dripping with the other pre-meds.
Eric feels fine, just tired from an exhausting long day. He had been there since his 8:45 AM blood work appointment and we left about 7 PM. Back tomorrow for round 2 at 8 AM.
Maureen
Eric feels fine, just tired from an exhausting long day. He had been there since his 8:45 AM blood work appointment and we left about 7 PM. Back tomorrow for round 2 at 8 AM.
Maureen
Thursday, 11 July 2019
Drugs to be used in treatment
Obinutuzumab is the infusion drug that will be administered. Venetoclax is the oral that will begin month two (in case you want to research). The previous treatment was rituximab and bendamustine.
Wednesday, 10 July 2019
After Five Years
After 5 years in remission, Eric's annual follow up labs and CT scan on 6/17 and 6/18 came with bad news this year: his cancer has returned (CLL/SLL-- Chronic Lymphocytic Leukemia/Small Cell Lymphocytic Lymphoma). The last few weeks have been stressful and angst-filled, waiting for the definitive diagnosis and treatment plan amidst many labs, a bone marrow biopsy, and platelet transfusion. (Normal platelets- 150,000 to 450,000; Eric's-16,000 and only 21,000 post-transfusion: dangerously low.)
Today's visit with the oncologist, Dr. Samaniego (Dr. S or Dr. Sam), was a bit overwhelming and I'll provide more details as I am able to better disseminate everything.
Eric is going to begin treatment (chemotherapy) immediately, this Friday 7/12 and Saturday 7/13. He'll have bloodwork done Friday morning, then he'll receive another platelet transfusion, and then a five hour chemo treatment. On Saturday, it will be the second five hour chemo treatment. Some lab work and an office visit will follow later in the week and then the next chemo will be 7/19. It's a long road ahead. The treatment protocol is a year long, with two different drugs. He has not had these drugs previously so it remains unknown how they will make him feel. On a positive note, the oncologist feels the platelets will react positively following the very first treatment.
If you pray, please do.
If you'd like to know when updates are posted here, you can choose to follow by email in the sidebar. (if you're viewing on mobile, scroll down and click "view web version" to see the sidebar). If you'd like me to text you and let you know when updates are posted, please let me know and I can do that too. If you don't already have my phone number, please email me.
(For the history of Eric's disease and treatment, which was initially diagnosed in November 2013, please see our previous blog http://howericsdoing.blogspot.com/ . )
Today's visit with the oncologist, Dr. Samaniego (Dr. S or Dr. Sam), was a bit overwhelming and I'll provide more details as I am able to better disseminate everything.
Eric is going to begin treatment (chemotherapy) immediately, this Friday 7/12 and Saturday 7/13. He'll have bloodwork done Friday morning, then he'll receive another platelet transfusion, and then a five hour chemo treatment. On Saturday, it will be the second five hour chemo treatment. Some lab work and an office visit will follow later in the week and then the next chemo will be 7/19. It's a long road ahead. The treatment protocol is a year long, with two different drugs. He has not had these drugs previously so it remains unknown how they will make him feel. On a positive note, the oncologist feels the platelets will react positively following the very first treatment.
If you pray, please do.
If you'd like to know when updates are posted here, you can choose to follow by email in the sidebar. (if you're viewing on mobile, scroll down and click "view web version" to see the sidebar). If you'd like me to text you and let you know when updates are posted, please let me know and I can do that too. If you don't already have my phone number, please email me.
(For the history of Eric's disease and treatment, which was initially diagnosed in November 2013, please see our previous blog http://howericsdoing.blogspot.com/ . )
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