Just wanted to share with my fellow MDS patients and caregivers the link to the latest MDS Newsletter.
http://mds-foundation.org/wp-content/uploads/manual/2015fallnewsletter.pdf
The American Society of Hematology (ASH) convention begins around December 5, 2015. When they post some of the speeches and news, I'll follow-up with a report here. I'm anxious to hear the results of the AG221 trial drug study update.
Thanks!
Wednesday, November 25, 2015
Monday, November 2, 2015
Post-Discharge Concerns with Liver Function
Todd was discharged from Cleveland Clinic on Monday, October 26,2015, after a full 12 days in the hospital. It too was a long day. They started with the doctors making their rounds. His counts looked good, and he was not febrile, so they decided to start him on the new oral anti-fungal drug, Posaconazole that morning. His total bilirubin looked a bit high, but under the 7.5 allowance per the trial study guidelines, so they also allowed him to take his chemo trial drug AG-221, along with the oral Cipro antibiotic to replace the IV medication Zosyn.
His blood counts were Whites: .95; Hemogloblin 10.8; Platelets 41,000; and ANCs .66
Liver counts: Total Bilirubin 5,8; Alkaline Phosphatase: 353; ALT: 129; and AST: 84; PT INR 1.1 These numbers weren't great, but tolerable at this point. The doctors were hoping that the Posaconazole would allow these numbers to go a bit lower, but by this day, there were trending up.
It took forever to be discharged of course. His nurse had to deaccess his port, and said she needed to use heparin, but I told her that his new Power Port, did not need heparin. So, apparently, she had to take an extraordinary amount of time to look it up, because I had to go get her an hour later, and she said that I was right, his port didn't need flushed with heparin.
The other delay, was waiting for his perscriptions from the pharmacy. The nurse had arranged for bedside delivery and someone did come by early in the afternoon telling us that the co-pay for the Posaconazole was going to be $70 and was that ok. We said yes, we didn't have a choice. She went off and didn't hear from anyone the rest of the day. After our nurse tried to call there, I decided I was going to pick them up myself so we could get out of there. I went to the main pharmacy and they didn't have the prescription there, it was at the Crile Pharmacy across the skyway. So, I had to walk over there. Luckily, a very nice lady in transportation was there with the golf cart and she offered to drive me over (yes, it is a long walk). When I got there, I realized that the prescription was only for 10 days, not 30 days! So, $70 for only a 10 day supply. The pharmacy had the scripts there and had no intention of getting them over to us, as far as I could tell.
When I got back, the nurse was ready to go over his discharge instructions and ordered a wheelchair to take him to the entrance for me to pick him up. By this time it was about 4:30 p.m. Needless to say, we hit Cleveland rush hour traffic and didn't make it home until about 8:30 p.m.
On Tuesday, October 27, Todd had a follow-up appointment with his local oncologist, at his request, so that we could "reconnect" even though all Todd really needed was blood work. It was a waste of time, the local oncologist still can't remember the name of the trial drug Todd is on, and asked us why were we there! Ugh...
Blood counts on Tuesday were mixed: Whites .7; Hemoglobin 11.3 (Never been this high since before transplant. Lack of fluids can make his blood concentration higher though). Platelets: 89,000.
We didn't get his CMP (Complete Metabolic panel) and had to request the results, but they said they wouldn't be able to get them and call us back until the following day, Wednesday. Ugh...
We went home and took a long nap, as we both were wiped out and happy to be sleeping in our bed.
Wednesday and Thursday, October 28 and 29, 2015, Todd was tired. I mean sleepy and not getting out of bed tired. I didn't understand this. His hemoglobin was so high! Then why was he so tired? I just chalked it up to fatigue. I was dragging, and I'm not sick!
I didn't hear from the local oncologist's office with the liver results, so I had to call and ask for the results via a voicemail. When I got home from doing my practicum at UD that afternoon, they had Still, something seemed "off." I texted his trial nurse with the results later:
Direct bilirubin was 6.4; Alkaline Phosphatase: 448; ALT 200; AST 107; So, these numbers were still going in the wrong direction and she asked if he was having any abdominal pain.
Until Friday, he had taken his AG221 and his Posaconazole every day along with his other medications, after getting the advice from his BMT doctor on Thursday. By Thursday night, he was having stomach pain about an hour after he ate. He was up pacing the floors, feeling like he did that night in the hospital when he was throwing up. His stomach finally settled down, but I was going to ask the doctors if they thought it might be a gall bladder attack.
Friday morning, we had to leave the house by 5:30 a.m. to get to his first appointment at the Cleveland Clinic by 9:00 a.m. First up, was the infectious disease doctors. After a thorough exam, they said they wanted to see his blood results for the day and then confer with his BMT doctor. In the meantime, they set up an appointment for a follow-up CT scan on November 18, 2015 to see if the pneumonia was gone or not. I asked about the stomach pain, and they said didn't think it was anything in his abdomen, especially not the gall bladder.
After that, we headed to treatment in the Taussig Cancer Center, were they drew his blood. one of the lab's machine was broken, so it took over 2 hours just to get the CBC results:
Whites were up a bit at .99; Hemoglobin had dropped to 9.5; and platelets had dropped to 50,000. ANCs and liver results were still not back by 2:00 p.m. when we headed upstairs to see his BMT doctor.
When we got upstairs, his trial nurse was there and his BMT doctor announced that they wanted to him discontinue taking BOTH his AG-221 trial drug, and the POSACONAZOLE. I was shocked! The liver numbers must have been bad. They finally had the results back:
Total bilirubin was 5.6, but the Alkaline Phosphatase was 558! AST 441! and the ALT 573!
While I didn't realize at the time how bad these numbers were, I would later find out that they were off the chart and severely dangerous! My first concern was fighting the pneumonia with NO anti-fungal drug. I asked the doctor: can't the fungal infection get worse? Her first response was that "they" or she still wasn't 100% convinced that it was a fungal pneumonia, but that she COULD be WRONG. (Shocked again). I brought up the most recent CT scans that showed nodules, which could be indicative of a fungal pneumonia, but again she said it isn't conclusive, but she could be wrong. This raised a red flag to me. So, what if it was fungal and they weren't going to treat it? He would start showing symptoms again? Yes, I could see this is what she meant; I had my answer. If he started running a fever again, or having lung problems, then it could be proof that it was fungal. Hadn't this already happened once while he was in the hospital? They took him off the anti-fungals, and that night he spiked a fever.
Then, we asked at what point could he start taking the AG221 again? What was the criteria they were going to use? They said at this point, his liver enzymes would all have to return to "baseline" numbers. I asked what, 1.5? And, the trial nurse, said no, the drug company wanted those numbers back to the levels they were before he started taking the drug! (Another shock). Going through my mind? Without the trial drug, it would only be a matter of time before his blood counts would decline, making him neutropenic and possibly needing transfusions again! After I brought this fear up to the doctor, she said she didn't think his numbers would decline that fast, but in my mind I remember that the first week he took the drug, it reversed his situation. Would a reversal of not taking his trial drug, make them decrease in a week?
This was not the news we had anticipated at all! It was determined that it would do no good to continue to check his counts via blood work in Dayton, since there really wouldn't be much they could do. Obviously, if he becomes symptomatic, can't get out bed, weak, bleeding, or other signs of low blood counts, I could run him into the Cancer Center/Local oncologist's office for blood work. I asked if the Cipro could cause any more elevation of his liver enzyme counts and the doctor said no.
Bottom line: Liver enzymes too high; no trial drug and no anti-fungal medications. Return for regular trial day, next Wednesday, November 4, 2015. He was already scheduled to go in for that day, since it would be Cycle 8, day 1, his last 10-hour day of blood draws on the trial. So, this protocol may not take place if it is determined when he gets his CBC pre-testing that his liver enzymes are still too high and he still won't be allowed to take the drug that day. If the numbers have come back down to baseline numbers, then they will proceed with giving him his dose of AG-221 that day, and then commence the 10 hour day of testing.
We didn't get home until about 8:30 p.m. It had been a 15 hour day of traveling and appointments. I drove both ways, up and back, so Todd could rest. Even though I was tired, something still seemed "off" to me about the appointments. The trial nurse was extremely quiet, and Todd didn't like me bringing up the symptoms of being sleepy, tired, and having the bad stomach ache the night before, but I felt there had to be some reason for this. So, I began searching for symptoms of elevated liver functions, and bam! There is was on several websites:
Symptoms of liver damage
Jaundice; severe fatigue; fever, abdominal pain; severe nausea and vomiting; bleeding that does not stop after a few minutes; and unusual swelling in feet or legs or weight gain of greater than 3 to 5 pounds in 1 week. This from http://cancer.unm.edu/cancer/cancer-info/cancer-treatment/side-effects-of-cancer-treatment/less-common-side-effects/organ-problems/liver-damage-hepatotoxicity/
From the National Library of Medicine: Severity Grading In Drug Induced Liver Injury (DILI):
Symptoms: fatigue, weakness, nausea, right upper quadrant pain, itching, skin rash, jaundice, anorexia, or weight loss. (paragraph 9).
Looking at these symptoms, it was clear, that Todd had many of them! Why didn't any of the doctors he saw tell us this! NO ONE said, yes, these are symptoms of liver damage! I have a feeling, no one wanted to tell us! It is hard to believe they didn't know, but I guess, I could be wrong.
The more I read, the angrier and more worried I became. It was looking like these liver enzyme numbers were indicators of some level of liver damage.
While the first chart on Severity Grading Chart is mainly for AIDS patients, the second half of the document and chart is for cancer patients on chemo drugs.
I was also researching his liver metabolism gene mutation. Apparently, this has not helped with his liver coping with the medications.
His blood counts were Whites: .95; Hemogloblin 10.8; Platelets 41,000; and ANCs .66
Liver counts: Total Bilirubin 5,8; Alkaline Phosphatase: 353; ALT: 129; and AST: 84; PT INR 1.1 These numbers weren't great, but tolerable at this point. The doctors were hoping that the Posaconazole would allow these numbers to go a bit lower, but by this day, there were trending up.
It took forever to be discharged of course. His nurse had to deaccess his port, and said she needed to use heparin, but I told her that his new Power Port, did not need heparin. So, apparently, she had to take an extraordinary amount of time to look it up, because I had to go get her an hour later, and she said that I was right, his port didn't need flushed with heparin.
The other delay, was waiting for his perscriptions from the pharmacy. The nurse had arranged for bedside delivery and someone did come by early in the afternoon telling us that the co-pay for the Posaconazole was going to be $70 and was that ok. We said yes, we didn't have a choice. She went off and didn't hear from anyone the rest of the day. After our nurse tried to call there, I decided I was going to pick them up myself so we could get out of there. I went to the main pharmacy and they didn't have the prescription there, it was at the Crile Pharmacy across the skyway. So, I had to walk over there. Luckily, a very nice lady in transportation was there with the golf cart and she offered to drive me over (yes, it is a long walk). When I got there, I realized that the prescription was only for 10 days, not 30 days! So, $70 for only a 10 day supply. The pharmacy had the scripts there and had no intention of getting them over to us, as far as I could tell.
When I got back, the nurse was ready to go over his discharge instructions and ordered a wheelchair to take him to the entrance for me to pick him up. By this time it was about 4:30 p.m. Needless to say, we hit Cleveland rush hour traffic and didn't make it home until about 8:30 p.m.
On Tuesday, October 27, Todd had a follow-up appointment with his local oncologist, at his request, so that we could "reconnect" even though all Todd really needed was blood work. It was a waste of time, the local oncologist still can't remember the name of the trial drug Todd is on, and asked us why were we there! Ugh...
Blood counts on Tuesday were mixed: Whites .7; Hemoglobin 11.3 (Never been this high since before transplant. Lack of fluids can make his blood concentration higher though). Platelets: 89,000.
We didn't get his CMP (Complete Metabolic panel) and had to request the results, but they said they wouldn't be able to get them and call us back until the following day, Wednesday. Ugh...
We went home and took a long nap, as we both were wiped out and happy to be sleeping in our bed.
Wednesday and Thursday, October 28 and 29, 2015, Todd was tired. I mean sleepy and not getting out of bed tired. I didn't understand this. His hemoglobin was so high! Then why was he so tired? I just chalked it up to fatigue. I was dragging, and I'm not sick!
I didn't hear from the local oncologist's office with the liver results, so I had to call and ask for the results via a voicemail. When I got home from doing my practicum at UD that afternoon, they had Still, something seemed "off." I texted his trial nurse with the results later:
Direct bilirubin was 6.4; Alkaline Phosphatase: 448; ALT 200; AST 107; So, these numbers were still going in the wrong direction and she asked if he was having any abdominal pain.
Until Friday, he had taken his AG221 and his Posaconazole every day along with his other medications, after getting the advice from his BMT doctor on Thursday. By Thursday night, he was having stomach pain about an hour after he ate. He was up pacing the floors, feeling like he did that night in the hospital when he was throwing up. His stomach finally settled down, but I was going to ask the doctors if they thought it might be a gall bladder attack.
Friday morning, we had to leave the house by 5:30 a.m. to get to his first appointment at the Cleveland Clinic by 9:00 a.m. First up, was the infectious disease doctors. After a thorough exam, they said they wanted to see his blood results for the day and then confer with his BMT doctor. In the meantime, they set up an appointment for a follow-up CT scan on November 18, 2015 to see if the pneumonia was gone or not. I asked about the stomach pain, and they said didn't think it was anything in his abdomen, especially not the gall bladder.
After that, we headed to treatment in the Taussig Cancer Center, were they drew his blood. one of the lab's machine was broken, so it took over 2 hours just to get the CBC results:
Whites were up a bit at .99; Hemoglobin had dropped to 9.5; and platelets had dropped to 50,000. ANCs and liver results were still not back by 2:00 p.m. when we headed upstairs to see his BMT doctor.
When we got upstairs, his trial nurse was there and his BMT doctor announced that they wanted to him discontinue taking BOTH his AG-221 trial drug, and the POSACONAZOLE. I was shocked! The liver numbers must have been bad. They finally had the results back:
Total bilirubin was 5.6, but the Alkaline Phosphatase was 558! AST 441! and the ALT 573!
While I didn't realize at the time how bad these numbers were, I would later find out that they were off the chart and severely dangerous! My first concern was fighting the pneumonia with NO anti-fungal drug. I asked the doctor: can't the fungal infection get worse? Her first response was that "they" or she still wasn't 100% convinced that it was a fungal pneumonia, but that she COULD be WRONG. (Shocked again). I brought up the most recent CT scans that showed nodules, which could be indicative of a fungal pneumonia, but again she said it isn't conclusive, but she could be wrong. This raised a red flag to me. So, what if it was fungal and they weren't going to treat it? He would start showing symptoms again? Yes, I could see this is what she meant; I had my answer. If he started running a fever again, or having lung problems, then it could be proof that it was fungal. Hadn't this already happened once while he was in the hospital? They took him off the anti-fungals, and that night he spiked a fever.
Then, we asked at what point could he start taking the AG221 again? What was the criteria they were going to use? They said at this point, his liver enzymes would all have to return to "baseline" numbers. I asked what, 1.5? And, the trial nurse, said no, the drug company wanted those numbers back to the levels they were before he started taking the drug! (Another shock). Going through my mind? Without the trial drug, it would only be a matter of time before his blood counts would decline, making him neutropenic and possibly needing transfusions again! After I brought this fear up to the doctor, she said she didn't think his numbers would decline that fast, but in my mind I remember that the first week he took the drug, it reversed his situation. Would a reversal of not taking his trial drug, make them decrease in a week?
This was not the news we had anticipated at all! It was determined that it would do no good to continue to check his counts via blood work in Dayton, since there really wouldn't be much they could do. Obviously, if he becomes symptomatic, can't get out bed, weak, bleeding, or other signs of low blood counts, I could run him into the Cancer Center/Local oncologist's office for blood work. I asked if the Cipro could cause any more elevation of his liver enzyme counts and the doctor said no.
Bottom line: Liver enzymes too high; no trial drug and no anti-fungal medications. Return for regular trial day, next Wednesday, November 4, 2015. He was already scheduled to go in for that day, since it would be Cycle 8, day 1, his last 10-hour day of blood draws on the trial. So, this protocol may not take place if it is determined when he gets his CBC pre-testing that his liver enzymes are still too high and he still won't be allowed to take the drug that day. If the numbers have come back down to baseline numbers, then they will proceed with giving him his dose of AG-221 that day, and then commence the 10 hour day of testing.
We didn't get home until about 8:30 p.m. It had been a 15 hour day of traveling and appointments. I drove both ways, up and back, so Todd could rest. Even though I was tired, something still seemed "off" to me about the appointments. The trial nurse was extremely quiet, and Todd didn't like me bringing up the symptoms of being sleepy, tired, and having the bad stomach ache the night before, but I felt there had to be some reason for this. So, I began searching for symptoms of elevated liver functions, and bam! There is was on several websites:
Symptoms of liver damage
Jaundice; severe fatigue; fever, abdominal pain; severe nausea and vomiting; bleeding that does not stop after a few minutes; and unusual swelling in feet or legs or weight gain of greater than 3 to 5 pounds in 1 week. This from http://cancer.unm.edu/cancer/cancer-info/cancer-treatment/side-effects-of-cancer-treatment/less-common-side-effects/organ-problems/liver-damage-hepatotoxicity/
From the National Library of Medicine: Severity Grading In Drug Induced Liver Injury (DILI):
Symptoms: fatigue, weakness, nausea, right upper quadrant pain, itching, skin rash, jaundice, anorexia, or weight loss. (paragraph 9).
Looking at these symptoms, it was clear, that Todd had many of them! Why didn't any of the doctors he saw tell us this! NO ONE said, yes, these are symptoms of liver damage! I have a feeling, no one wanted to tell us! It is hard to believe they didn't know, but I guess, I could be wrong.
The more I read, the angrier and more worried I became. It was looking like these liver enzyme numbers were indicators of some level of liver damage.
While the first chart on Severity Grading Chart is mainly for AIDS patients, the second half of the document and chart is for cancer patients on chemo drugs.
I was also researching his liver metabolism gene mutation. Apparently, this has not helped with his liver coping with the medications.
I'm just glad that they were mindful to watch out for high liver counts and now my apprehension of Todd going off the trial drug has dissipated. I know that keeping his liver from severe or permanent damage is more important right now.
Sunday, November 1, 2015
Day 12 Hospitalized: Feeling Better; Ready to come home
Day 12 Hospitalized: Cleveland Clinic, October 25, 2015
Today was the first day they were able to start the Posaconazole by tablet: 3 tablets. They also took away the IV Antibiotic Zosyn after his morning dose and will begin the tablet antibiotic Cipro this evening. They will continue to prescribe this antibiotic after he is released.
Surprisingly, his hemoglobin has been in the tens the last two days; they haven't been this high since pre-transplant I believe. When I mentioned it to his trial nurse and she said that it is likely that he is a bit dehydrated, his blood no longer full of IV fluids.
About 5:00 p.m., I noticed his cheeks were starting to look red, like a fever was coming on. So, I went to get his nurse and he wasn't febrile (having or showing the symptoms of a fever), but close at 99.5. It hadn't got any higher by bedtime, so I think he will be alright. He ate a bit better today, but of course, with the new antibiotics, he has developed some diarrhea with it.
CBC: Whites: .69; Hemoglobin: 10.4; Platelets 46,000; ANCs .47
Liver Function:5.8 Total Bilirubin; Alkaline Phosphastase 353; ALT: 129; and AST 84
These numbers seem to be going up, but were in the allowable range for him to take his trial drug. They will want to see these tomorrow and hope that they don't go up.
Surprisingly, his hemoglobin has been in the tens the last two days; they haven't been this high since pre-transplant I believe. When I mentioned it to his trial nurse and she said that it is likely that he is a bit dehydrated, his blood no longer full of IV fluids.
About 5:00 p.m., I noticed his cheeks were starting to look red, like a fever was coming on. So, I went to get his nurse and he wasn't febrile (having or showing the symptoms of a fever), but close at 99.5. It hadn't got any higher by bedtime, so I think he will be alright. He ate a bit better today, but of course, with the new antibiotics, he has developed some diarrhea with it.
CBC: Whites: .69; Hemoglobin: 10.4; Platelets 46,000; ANCs .47
Liver Function:5.8 Total Bilirubin; Alkaline Phosphastase 353; ALT: 129; and AST 84
These numbers seem to be going up, but were in the allowable range for him to take his trial drug. They will want to see these tomorrow and hope that they don't go up.
Sunday, October 25, 2015
Day 11 Hospitalized: Stomach upset keeps Todd up
Day 11 Hospitalization: October 24, 2015
CBC: Whites: .57 Hemoglobin: 10.1 ; Platelets: 56,000 ; ANCs: .31
Liver Function: Total Bilirubin:3.8, Alkaline Phosphatase:322 AST:69 ALT: 85
Todd was feeling good. Last night we stayed up late watching TV and eating/snacking. We napped a lot through the day to catch up on much needed sleep. Unfortunately, about 3:30 a.m. Todd woke up with a terrible stomach ache, and we were paging the nurse for something to settle it. By 4:30 a.m. he was throwing up. Nothing seemed to help: they tried IV Ativan, since it works like Phenegran. He tried to take Oxycodone for the stomach pain, but that didn't help either. The AG221 drug protocol prohibits antacids like tums, Malox, etc. He felt bad until he was finally able to sleep by 8:00 a.m. His trial nurse was on the floor and said he could have simethicone, for any gas in his stomach.
The nurse practitioner, the infectious disease doctor, and Dr. Sekeres made their rounds later. Based on the recommendation of the infectious disease doctor, they want to try a "better" type of anti-fungal drug that is stronger, but with less side effects, hopefully, called Posaconazole. This can be taken by pill and would allow immediate release. Dr. Sekeres would like him to be on it a day or two to see how it effects the bilirubin. Unfortunately, they had already given him the Micafungin for the day and didn't want to double dose him. So, tomorrow morning they will give him the Posaconazole and then check his numbers early Monday morning. Either way, he should be able to go home (Please???); either with the home healthcare set up at home for the Micafungin or with a prescription of Posaconazole.
He ate very little and slept almost the entire day. I was restless and wishing I had someone to talk to something diverting (besides homework) to help pass the time. The Cleveland Clinic, while like a bustling city during the week, is dead during the weekend with half of the limited restaurants here closed. I ordered some hot Chinese take out that delivered to the hospital and watched the Ohio State Buckeyes whip up on Rutgers, until that wasn't even fun anymore! I'm afraid that was the highlight of the day.
CBC: Whites: .57 Hemoglobin: 10.1 ; Platelets: 56,000 ; ANCs: .31
Liver Function: Total Bilirubin:3.8, Alkaline Phosphatase:322 AST:69 ALT: 85
Todd was feeling good. Last night we stayed up late watching TV and eating/snacking. We napped a lot through the day to catch up on much needed sleep. Unfortunately, about 3:30 a.m. Todd woke up with a terrible stomach ache, and we were paging the nurse for something to settle it. By 4:30 a.m. he was throwing up. Nothing seemed to help: they tried IV Ativan, since it works like Phenegran. He tried to take Oxycodone for the stomach pain, but that didn't help either. The AG221 drug protocol prohibits antacids like tums, Malox, etc. He felt bad until he was finally able to sleep by 8:00 a.m. His trial nurse was on the floor and said he could have simethicone, for any gas in his stomach.
The nurse practitioner, the infectious disease doctor, and Dr. Sekeres made their rounds later. Based on the recommendation of the infectious disease doctor, they want to try a "better" type of anti-fungal drug that is stronger, but with less side effects, hopefully, called Posaconazole. This can be taken by pill and would allow immediate release. Dr. Sekeres would like him to be on it a day or two to see how it effects the bilirubin. Unfortunately, they had already given him the Micafungin for the day and didn't want to double dose him. So, tomorrow morning they will give him the Posaconazole and then check his numbers early Monday morning. Either way, he should be able to go home (Please???); either with the home healthcare set up at home for the Micafungin or with a prescription of Posaconazole.
He ate very little and slept almost the entire day. I was restless and wishing I had someone to talk to something diverting (besides homework) to help pass the time. The Cleveland Clinic, while like a bustling city during the week, is dead during the weekend with half of the limited restaurants here closed. I ordered some hot Chinese take out that delivered to the hospital and watched the Ohio State Buckeyes whip up on Rutgers, until that wasn't even fun anymore! I'm afraid that was the highlight of the day.
Friday, October 23, 2015
Day 10 Hospitalized: Pneumonia needs special treatment
Day 10 Hospitalized: October 23, 2015
CBC: Whites: .33; Hemoglobin 9.2; Platelets: 55,000; ANCs: too low to count
Liver Function: Total Bilirubin: 4.5; Alkaline Phosphatase: 318; ALT 63; AST: 58
We were all ready to go home today, until some doubt was introduced by the Nurse Practitioner, who always comes in first. I knew they had the scan results from yesterday, and I knew the scans showed nodules, which is indicative of a fungal type of pneumonia. She said they were concerned with the scan results and wanted to address the treatment options. She said she wasn't sure what the game plan was, but it didn't sound positive for going home.
The "herd" of doctors don't usually get around to Todd's room until around 11:00 a.m. when they are making their rounds. (Wish I could take a picture of all of them with their rolling computers. Formidable and Serious group). Dr. Sekeres and his team came in and began discussing the CT scans of the lungs acknowledging that there are many ways to classify pneumonia, especially molds or fungal pneumonia, and when a radiologists uses the term "nodules" this is usually a key term describing that type. He said they thought that since they took away the Voriconazole, the antifungal he was on before, they noticed his bilirubin decrease; so they believe that the Vori was causing the high elevated bilirubin. Now that they feel confident it is a fungal pneumonia, and not just guessing as before, they have to put him back on a antifungal drug, but not the Vori, so he suggested another drug that is allowed under the AG221 drug list of approved drugs to take, called Micafungin. This medicine is only administered once a day per IV and Todd will have to be on it for at least 30 days.
So until they can get some kind of home healthcare in place, where he can get the IV administered at home, he will have to stay here to get it! And of course, we learned last weekend, not too many people in healthcare work on the weekend. Dr. Sekeres thinks they can get it set for us by Monday or Tuesday, so Todd can be discharged on Monday. (Not holding my breath at this point).
The doctor has also called in an infectious disease doctor to consult on the treatment of the pneumonia. Two different doctors can in today, asking a ton of questions from the name of every country Todd has ever visited to his most recent activities. They brought up the option of having the bronchoscope done to better determine the exact type of fungus in the lung, so that they can recommend a precise drug treatment for it. While they will have to discuss this with Dr. Sekeres and consider the risks (once again) of doing the procedure with Todd's low platelets, she felt certain that it was crucial it get treated properly and thoroughly or it could spread or get much worse.
So, we sit around and wait. Todd is feeling much better; more like himself. He is still napping, but today he has sit up and watched TV, talked on the phone, and actually ate very well. I think he is really ready to come home and hopes to get back to a normal routine. I have already told him not to expect to be running around, but to plan on resting a lot and staying away from large crowds, sick people, and outdoor activities involving wood, etc. His whites and ANCs are precariously low and the risk of getting another infection puts him at high risk. This whole experience has been a wake-up call to be more cautious in what he does, whether he is counts are up and he feels good, like before, knowing that he is still vulnerable!
Anyway, I don't think Dr. Sekeres is going to be too keen on having the Bronchoscopy done, but we will see over the next two days. Meanwhile, we are trying to hang out and not get too impatient. They continue to give him the Zosyn antibiotic IV every 6 hours at 12:00 and 6:00 round the clock. He is still on his antiviral and has been able to take the full dose of his AG221.
It is going to be a long, slow road, and we just need to acknowledge it with patience. Thanks for your prayers and support.
CBC: Whites: .33; Hemoglobin 9.2; Platelets: 55,000; ANCs: too low to count
Liver Function: Total Bilirubin: 4.5; Alkaline Phosphatase: 318; ALT 63; AST: 58
We were all ready to go home today, until some doubt was introduced by the Nurse Practitioner, who always comes in first. I knew they had the scan results from yesterday, and I knew the scans showed nodules, which is indicative of a fungal type of pneumonia. She said they were concerned with the scan results and wanted to address the treatment options. She said she wasn't sure what the game plan was, but it didn't sound positive for going home.
The "herd" of doctors don't usually get around to Todd's room until around 11:00 a.m. when they are making their rounds. (Wish I could take a picture of all of them with their rolling computers. Formidable and Serious group). Dr. Sekeres and his team came in and began discussing the CT scans of the lungs acknowledging that there are many ways to classify pneumonia, especially molds or fungal pneumonia, and when a radiologists uses the term "nodules" this is usually a key term describing that type. He said they thought that since they took away the Voriconazole, the antifungal he was on before, they noticed his bilirubin decrease; so they believe that the Vori was causing the high elevated bilirubin. Now that they feel confident it is a fungal pneumonia, and not just guessing as before, they have to put him back on a antifungal drug, but not the Vori, so he suggested another drug that is allowed under the AG221 drug list of approved drugs to take, called Micafungin. This medicine is only administered once a day per IV and Todd will have to be on it for at least 30 days.
So until they can get some kind of home healthcare in place, where he can get the IV administered at home, he will have to stay here to get it! And of course, we learned last weekend, not too many people in healthcare work on the weekend. Dr. Sekeres thinks they can get it set for us by Monday or Tuesday, so Todd can be discharged on Monday. (Not holding my breath at this point).
The doctor has also called in an infectious disease doctor to consult on the treatment of the pneumonia. Two different doctors can in today, asking a ton of questions from the name of every country Todd has ever visited to his most recent activities. They brought up the option of having the bronchoscope done to better determine the exact type of fungus in the lung, so that they can recommend a precise drug treatment for it. While they will have to discuss this with Dr. Sekeres and consider the risks (once again) of doing the procedure with Todd's low platelets, she felt certain that it was crucial it get treated properly and thoroughly or it could spread or get much worse.
So, we sit around and wait. Todd is feeling much better; more like himself. He is still napping, but today he has sit up and watched TV, talked on the phone, and actually ate very well. I think he is really ready to come home and hopes to get back to a normal routine. I have already told him not to expect to be running around, but to plan on resting a lot and staying away from large crowds, sick people, and outdoor activities involving wood, etc. His whites and ANCs are precariously low and the risk of getting another infection puts him at high risk. This whole experience has been a wake-up call to be more cautious in what he does, whether he is counts are up and he feels good, like before, knowing that he is still vulnerable!
Anyway, I don't think Dr. Sekeres is going to be too keen on having the Bronchoscopy done, but we will see over the next two days. Meanwhile, we are trying to hang out and not get too impatient. They continue to give him the Zosyn antibiotic IV every 6 hours at 12:00 and 6:00 round the clock. He is still on his antiviral and has been able to take the full dose of his AG221.
It is going to be a long, slow road, and we just need to acknowledge it with patience. Thanks for your prayers and support.
Thursday, October 22, 2015
Day 9 Hopitalized: An early morning fever causes delay in going home.
Day 9 Hospitalized: October 22, 2015 @Cleveland Clinic
CBC: Whites .39!!; Hemoglobin 8.8; Platelets 56,000; ANCs: Too low to count!!!
Liver Function: Total Bilirubin: 5.6; Alkaline Phosphatase: 258; ALT: 50; AST: 39
Coagulation: PT Sec: 11.3; PT INR: 1.0; APTT: 35.6 (high)
Well, instead of getting to go home today as planned, Todd is still here. He spiked a fever of 101 last night about 12:30 a.m. They didn't need to give him anything for it, and really couldn't because his bilirubin yesterday was the highest ever. It went down on its own throughout the night.
I knew this probably meant that they would NOT let him go home today and the Nurse Practitioner confirmed this news early this morning. When the Attending Hematologist/Oncologist, Dr. Sekeres and his team came in before noon, he had already formulated a plan of action, one that I was happy with. Unsure what caused the fever to spike: whether it was the Rhinovirus/Cold hanging on or the pneumonia, he decided to run a new CT scan of the lungs and the abdomen. They want to get a fresh look at the pneumonia, and have their own radiologists look at it. Up until now, they have only been able to review the CT images sent to them from the scan down last week at Miami Valley Hospital in Dayton. They are just doing the abdominal scan as a precaution. The Dr. said it never fails, that a day later, they wish they had done the abdominal, so he is trying to avoid that scenario.
Well, transportation within the Cleveland Clinic appears to be an issue too. So far, we have been waiting an hour for someone to come up to get Todd to take him to radiology. Ugh... Our nurse told us that there still is a shortage of help in medical staffing all around: doctors, nurses, and transportation staff. He explained that is why the doctors are making more use of Nurse Practitioners and Physician Assistants. Well two of our kids may be heading into the medical profession to help with this shortage. Abby was planning on going into Psychiatry, and is taking pre-med coursework, but she really has developed a passion for alternative, holistic medicine. She just found out about a study abroad trip to India with the pre-med program and a doctor going there to treat patients with alternative medicine. The trip will be during Winter break, but she needs to get signed up and paid for it now. We are looking into it. And, my youngest, Ellie, just joined the pre-med club at school, and is looking to start volunteering at Soin Medical Center. My Hannah Lewis will cheer everyone up with her awesome art! The Cade family has got this!
They finally took him down an hour or so later, and it only took about 15 minutes. I checked with his nurse about 7:00 p.m. and he said Todd's results were back, but wasn't sure if the doctor had a chance to review the radiologist's report yet. From a quick look at the images and the report, nothing officially, it looked like the pneumonia was a bit more defined or not as hazy with "nodules" which if I recall my prior conversations with the infectious disease doctors and others, that can be an indicator of an fungal type of pneumonia. So, I guess we won't know the official results until the nurse practitioner or the doctors make their rounds in the morning.
So, as long as he can go through the night without a fever, and the pneumonia and Rhinovirus can be treated orally at home, we should be able to go home tomorrow either late morning or early afternoon.
Sue Mize, our current social worker at the Cleveland Clinic called after she noticed Todd had been admitted to offer a room at the Hope Lodge for tonight, as they had an opening. I declined since Todd should be able to released tomorrow. My neck has been stiff though from sleeping on that recliner bed and if I knew he was going to be here any longer, I would have been tempted to accept! It was nice to know though, that if this happens again, that I could call her and she can try to make arrangements for me there in the future. Nice option to have if he would ever be hospitalized for a longer period of time.
Personal notes:
We may have someone coming to see the house this weekend from out-of-state. I'm not finding work, and I'm just resigned that it is not the right timing, but I could continue to use prayers in this department. I have applied for a fellowship at the Library of Congress starting next year, but it is a long-shot to say the very least and would require a temporary move of the family or me. So, that's not ideal. Right now, I will be happy to get through this semester and graduate, although after graduation, internships will likely become a closed door to me.
When we get home, I will need help with Todd, so that I can get back to my practicum at the University of Dayton. I mainly just need someone to come sit with him during the day (9am-5pm). I know his mom and my parents will be willing to help, but it would be nice, to have several people willing to rotate. I would like to be the one to go with him to his appointments if I can. His research nurse Ashley came by today saying she had been trying to get a hold of his local oncologist all day to set up an appointment for Monday, October 26, 2015 of next week. (Where has this month gone?). And, if he is feeling better, they would like to see him on Thursday of next week.
Thanks for your prayers and support.
CBC: Whites .39!!; Hemoglobin 8.8; Platelets 56,000; ANCs: Too low to count!!!
Liver Function: Total Bilirubin: 5.6; Alkaline Phosphatase: 258; ALT: 50; AST: 39
Coagulation: PT Sec: 11.3; PT INR: 1.0; APTT: 35.6 (high)
Well, instead of getting to go home today as planned, Todd is still here. He spiked a fever of 101 last night about 12:30 a.m. They didn't need to give him anything for it, and really couldn't because his bilirubin yesterday was the highest ever. It went down on its own throughout the night.
I knew this probably meant that they would NOT let him go home today and the Nurse Practitioner confirmed this news early this morning. When the Attending Hematologist/Oncologist, Dr. Sekeres and his team came in before noon, he had already formulated a plan of action, one that I was happy with. Unsure what caused the fever to spike: whether it was the Rhinovirus/Cold hanging on or the pneumonia, he decided to run a new CT scan of the lungs and the abdomen. They want to get a fresh look at the pneumonia, and have their own radiologists look at it. Up until now, they have only been able to review the CT images sent to them from the scan down last week at Miami Valley Hospital in Dayton. They are just doing the abdominal scan as a precaution. The Dr. said it never fails, that a day later, they wish they had done the abdominal, so he is trying to avoid that scenario.
Well, transportation within the Cleveland Clinic appears to be an issue too. So far, we have been waiting an hour for someone to come up to get Todd to take him to radiology. Ugh... Our nurse told us that there still is a shortage of help in medical staffing all around: doctors, nurses, and transportation staff. He explained that is why the doctors are making more use of Nurse Practitioners and Physician Assistants. Well two of our kids may be heading into the medical profession to help with this shortage. Abby was planning on going into Psychiatry, and is taking pre-med coursework, but she really has developed a passion for alternative, holistic medicine. She just found out about a study abroad trip to India with the pre-med program and a doctor going there to treat patients with alternative medicine. The trip will be during Winter break, but she needs to get signed up and paid for it now. We are looking into it. And, my youngest, Ellie, just joined the pre-med club at school, and is looking to start volunteering at Soin Medical Center. My Hannah Lewis will cheer everyone up with her awesome art! The Cade family has got this!
They finally took him down an hour or so later, and it only took about 15 minutes. I checked with his nurse about 7:00 p.m. and he said Todd's results were back, but wasn't sure if the doctor had a chance to review the radiologist's report yet. From a quick look at the images and the report, nothing officially, it looked like the pneumonia was a bit more defined or not as hazy with "nodules" which if I recall my prior conversations with the infectious disease doctors and others, that can be an indicator of an fungal type of pneumonia. So, I guess we won't know the official results until the nurse practitioner or the doctors make their rounds in the morning.
So, as long as he can go through the night without a fever, and the pneumonia and Rhinovirus can be treated orally at home, we should be able to go home tomorrow either late morning or early afternoon.
Sue Mize, our current social worker at the Cleveland Clinic called after she noticed Todd had been admitted to offer a room at the Hope Lodge for tonight, as they had an opening. I declined since Todd should be able to released tomorrow. My neck has been stiff though from sleeping on that recliner bed and if I knew he was going to be here any longer, I would have been tempted to accept! It was nice to know though, that if this happens again, that I could call her and she can try to make arrangements for me there in the future. Nice option to have if he would ever be hospitalized for a longer period of time.
Personal notes:
We may have someone coming to see the house this weekend from out-of-state. I'm not finding work, and I'm just resigned that it is not the right timing, but I could continue to use prayers in this department. I have applied for a fellowship at the Library of Congress starting next year, but it is a long-shot to say the very least and would require a temporary move of the family or me. So, that's not ideal. Right now, I will be happy to get through this semester and graduate, although after graduation, internships will likely become a closed door to me.
When we get home, I will need help with Todd, so that I can get back to my practicum at the University of Dayton. I mainly just need someone to come sit with him during the day (9am-5pm). I know his mom and my parents will be willing to help, but it would be nice, to have several people willing to rotate. I would like to be the one to go with him to his appointments if I can. His research nurse Ashley came by today saying she had been trying to get a hold of his local oncologist all day to set up an appointment for Monday, October 26, 2015 of next week. (Where has this month gone?). And, if he is feeling better, they would like to see him on Thursday of next week.
Thanks for your prayers and support.
Wednesday, October 21, 2015
Day 8: Hospitalized Fevers gone but numbers are poor
Day 8 Hospitalized: Cleveland Clinic
CBC: Whites: .57; Hemogloblin: 7.9; Platelets: 47,000; ANCs .48
Liver Function: Total Bilirubin: 8.7! (Normal 1.5); Alkaline Phosphatase: 219 (Normal 45-115); ALT: 52 (Normal: 7-56); AST: 46 (Normal 5-40);
Blood coagulation: PT sec: 11.1 (Normal 9.5-13.8); PT INR: 1.0; APTT: 36.3
Fever continues to stay in the 99 degree area, which technically is not considered a fever. Headache is persistent, especially after getting out of bed. Hemoglobin is still low and they had to give him a unit of blood this morning. His ANCs are also low and he is now neutropenic making him a higher risk for catching other infections! Bilirubin numbers the highest yet at 8.7. Dr.Sekeres, the attending physician was upset he took his AG221 this morning, but we didn't have the results back and there was no note to wait. Everyone yesterday, was like yes, get back on it! Sometimes, it feels like you can't win.
Dr. Sekeres, feels comfortable with letting Todd be discharged tomorrow since they know he has the Rhinovirus and the fevers are gone. However, this is conditional and if they discharge him, he will still require rigorous out-patient care, which makes his BMT doctor and trial nurse a little leery and concerned about discharging him. His BMT doctor has the final say, and she is not going to let him go without multiple appointments for CBCs an visits with the local oncologists to set up transfusions and to keep an eye on his bilirubin.
When his trial nurse came in before noon, she was not very confident about releasing him so soon. She said a lot would have to happen. First, they would have to make sure there are no complications or other problems between now and then. Second, they may need to give him another unit of blood by the end of the day, to help boost him before discharge, because he hasn't been getting the 1.0 boost with the prescribed 1 unit transfusion in the past several days or in other words, his hemoglobin has not been increasing enough after transfusions like they should. Third, he would need to see his local oncologist as early as Friday, to have a repeat CBC done to check blood counts and bilirubin counts. Multiple appointments would then need to be set up for next week, every couple of days, to check counts again. Treatment appointments for transfusions, would follow if necessary. Fourth, he has to be seen 5 days post-discharge, which means we would likely have to come back up to Cleveland by next Thursday (no weekend days are counted) or he may be evaluated by local oncologist, if Dr. Hamilton, BMT doctor feels comfortable with this. I know it is difficult for them to not be there to make this critical decisions. Repeat x-rays will also be necessary at some point too.
Right now, Todd has a killer headache and still feels poorly, he just got some pain meds and is sleeping. It is hard for me to think about discharging him with low blood counts and him feeling so bad, but I know there is also risks of infections in a hospital too. So glad we made the trip up here, even if it was only for a few days. I feel like they have made better decisions for his care here. No regrets. Wish we had done it sooner. Next time, I might just drive him up to Cleveland myself, right away, as long as he is not critical.
CBC: Whites: .57; Hemogloblin: 7.9; Platelets: 47,000; ANCs .48
Liver Function: Total Bilirubin: 8.7! (Normal 1.5); Alkaline Phosphatase: 219 (Normal 45-115); ALT: 52 (Normal: 7-56); AST: 46 (Normal 5-40);
Blood coagulation: PT sec: 11.1 (Normal 9.5-13.8); PT INR: 1.0; APTT: 36.3
Fever continues to stay in the 99 degree area, which technically is not considered a fever. Headache is persistent, especially after getting out of bed. Hemoglobin is still low and they had to give him a unit of blood this morning. His ANCs are also low and he is now neutropenic making him a higher risk for catching other infections! Bilirubin numbers the highest yet at 8.7. Dr.Sekeres, the attending physician was upset he took his AG221 this morning, but we didn't have the results back and there was no note to wait. Everyone yesterday, was like yes, get back on it! Sometimes, it feels like you can't win.
Dr. Sekeres, feels comfortable with letting Todd be discharged tomorrow since they know he has the Rhinovirus and the fevers are gone. However, this is conditional and if they discharge him, he will still require rigorous out-patient care, which makes his BMT doctor and trial nurse a little leery and concerned about discharging him. His BMT doctor has the final say, and she is not going to let him go without multiple appointments for CBCs an visits with the local oncologists to set up transfusions and to keep an eye on his bilirubin.
When his trial nurse came in before noon, she was not very confident about releasing him so soon. She said a lot would have to happen. First, they would have to make sure there are no complications or other problems between now and then. Second, they may need to give him another unit of blood by the end of the day, to help boost him before discharge, because he hasn't been getting the 1.0 boost with the prescribed 1 unit transfusion in the past several days or in other words, his hemoglobin has not been increasing enough after transfusions like they should. Third, he would need to see his local oncologist as early as Friday, to have a repeat CBC done to check blood counts and bilirubin counts. Multiple appointments would then need to be set up for next week, every couple of days, to check counts again. Treatment appointments for transfusions, would follow if necessary. Fourth, he has to be seen 5 days post-discharge, which means we would likely have to come back up to Cleveland by next Thursday (no weekend days are counted) or he may be evaluated by local oncologist, if Dr. Hamilton, BMT doctor feels comfortable with this. I know it is difficult for them to not be there to make this critical decisions. Repeat x-rays will also be necessary at some point too.
Right now, Todd has a killer headache and still feels poorly, he just got some pain meds and is sleeping. It is hard for me to think about discharging him with low blood counts and him feeling so bad, but I know there is also risks of infections in a hospital too. So glad we made the trip up here, even if it was only for a few days. I feel like they have made better decisions for his care here. No regrets. Wish we had done it sooner. Next time, I might just drive him up to Cleveland myself, right away, as long as he is not critical.
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