Hi Allison,
I'm so happy to hear that your Mom was doing better yesterday (Dec. 31). I hope that continues into the New Year!
You mentioned two things that brought back more memories for me and prompt me to give you a couple of stories.
Taste buds changing. Oh yes! Big time! I've always liked hard boiled eggs. During the first couple of days when I was in the hospital for my SCT, I had hard boiled eggs for breakfast, and they were delicious. In fact, they tasted so good, it was amazing. Best. Hard. Boiled. Eggs. Ever. But on the third day, some switch flipped, and when I tried to eat the hard boiled egg they gave me that day, I got nauseous. Couldn't even look at a hard boiled egg for months after that.
New hospital wrist band means it's time to go home. It was time for me to go home (or actually to Hope Lodge as a "halfway house") when the nurses gave me instructions to order a Medic Alert bracelet. They said I needed it to instruct EMS and other medical folks to give me irradiated blood products only. As they explained it to me, non-irradiated blood products could cause a form of graft vs. host disease for people who have had an auto SCT, which is almost always fatal. I was told I'd need to wear the bracelet for at least a year. When I got to that 1 year mark this summer, I asked my myeloma specialist whether I still needed to wear the bracelet. He said to keep it, so it's still there on my right wrist. A reminder of my SCT. This bracelet is one little aspect of SCTs that I haven't seen anyone else mention here.
Good luck with your travels. And best wishes to your Mom for continued improvement as we move into 2015!
Mike
Forums
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 20
Reporting from afar for a few days.
The fatigue really seems to be getting the best of my Mom. After the glimmer of improvement yesterday, she spent the morning and afternoon mostly sleeping.
Her counts:
WBC: 6.29
Hemoglobin: 7.6
Platelets: 135
ANC: 4.65.
A hemoglobin of less than 8.0 triggers a blood transfusion, which she had this morning.
Her WBC counts continue to rise on their own.
Due to some diminished bowel sounds, she is no longer getting the Lomotil. The diarrhea seems to have gone away but they don’t want her to have the opposite problem, which is actually something expected to happen.
She needed extra magnesium this morning.
She slept the morning and got up around 1 pm to CHG and change. She sat in the chair for about 20 minutes, but she wasn’t able to get much lunch down.
She was back in bed when the doctor came who watched her fall asleep while sitting up in bed.
Another two laps at 3 pm after which she was completely wiped out. My dad said she tried to sit up in bed for a bit but fell asleep.
I can feel my Dad’s helplessness a bit today. It’s much how I felt on Monday when he was away and my mom couldn’t get out of bed.
I didn’t hear from him again after 4 pm when the nurse was in getting some blood to test for magnesium.
I had hoped to have better news today. I just want my mom back. I know she wants that too.
It is a New Year and Roswell celebrates it with some changes to the menu. You have to appreciate the little things that change it up a little bit.
Reporting from afar for a few days.
The fatigue really seems to be getting the best of my Mom. After the glimmer of improvement yesterday, she spent the morning and afternoon mostly sleeping.
Her counts:
WBC: 6.29
Hemoglobin: 7.6
Platelets: 135
ANC: 4.65.
A hemoglobin of less than 8.0 triggers a blood transfusion, which she had this morning.
Her WBC counts continue to rise on their own.
Due to some diminished bowel sounds, she is no longer getting the Lomotil. The diarrhea seems to have gone away but they don’t want her to have the opposite problem, which is actually something expected to happen.
She needed extra magnesium this morning.
She slept the morning and got up around 1 pm to CHG and change. She sat in the chair for about 20 minutes, but she wasn’t able to get much lunch down.
She was back in bed when the doctor came who watched her fall asleep while sitting up in bed.
Another two laps at 3 pm after which she was completely wiped out. My dad said she tried to sit up in bed for a bit but fell asleep.
I can feel my Dad’s helplessness a bit today. It’s much how I felt on Monday when he was away and my mom couldn’t get out of bed.
I didn’t hear from him again after 4 pm when the nurse was in getting some blood to test for magnesium.
I had hoped to have better news today. I just want my mom back. I know she wants that too.
It is a New Year and Roswell celebrates it with some changes to the menu. You have to appreciate the little things that change it up a little bit.
- New Years Dinner V2.jpg (80.87 KiB) Viewed 670 times
- Variety in the Menu V2.jpg (79.9 KiB) Viewed 670 times
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Mikeb,
I have read about the Medic alert bracelet - I believe the doctor mentioned it at one point. It certainly makes sense.
-Allison
I have read about the Medic alert bracelet - I believe the doctor mentioned it at one point. It certainly makes sense.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Allison,
I still wear my green medical alert wristband given to me by Roswell Park. I've purchased 2 myself; I just like the feel and information provided by the silicone band. I also find it convenient because of the numerous X-rays / MRIs that I need to have done.
As Mikeb said, I've been told to wear it always and to always have my doctor's letter, stating I've had a transplant, to be presented if I have a medical emergency.
Sending positive thoughts to your Mom!
Kully
I still wear my green medical alert wristband given to me by Roswell Park. I've purchased 2 myself; I just like the feel and information provided by the silicone band. I also find it convenient because of the numerous X-rays / MRIs that I need to have done.
As Mikeb said, I've been told to wear it always and to always have my doctor's letter, stating I've had a transplant, to be presented if I have a medical emergency.
Sending positive thoughts to your Mom!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 21
Sleepy, Sleepy, Sleepy.
It’s the word and the mystery of Day 21.
Why does she keep falling asleep?
In my Dad’s words; “Still sleeps and wants to go to sleep at all times.” It is almost like she is sedated and, with all the sleeping, she has not only lost track of the day but of the times of day.
This morning, my Dad got to the hospital early to catch the NP on her morning visit and did just that. The doctor was also there and they want to get her out of this “like-sedated” state. They have changed their tune about her not wanting to get up and move around and have acknowledged that there is a problem. They have stopped the IV Ativan that she has been receiving every 6 hours even though she is only getting a very small amount. My mom agreed ... and then nodded off.
Her lung sounds are improving as are her bowel sounds. All pending tests (nasal wash and blood culture) have come back negative.
And her counts are even better:
WBC: 8.77
Hemoblobin: 9.2
Platelet: 161
ANC: 7.11
She is still receiving TPN over 24 hours and had magnesium this morning (which is not unusual for BMT patients).
My Dad was able to get her to take her meds in an awake moment around 10 a.m. and then she slept for an hour.
She actually woke up on her own at 11 a.m. and got CHG’d, Caphasol, change her pajamas, and sat in the recliner and went right to sleep. At 12:30 p.m., my dad left the room to get the laundry and, when he came back, she had put herself back to bed and was sound asleep.
In the afternoon, the NP came back and said that, in addition to stopping the Ativan, they were also going to stop the Cymbalta (duloxetine) which also has some drowsiness associated with it. I had never really understood why they started her on Cymbalta since she was already on gabapentin for her neuropathy. She last had it at 9:30 a.m. this morning.
The plan is to start switching her back over to pills and away from the IV meds. I take this to mean that her throat is feeling much better. The Declomycin was also discontinued today.
At dinner, my dad felt my mother was a “tiny, tiny” bit more alert, and she ate more – half a bowl of chicken broth, half a cup of tea, and a few spoonfuls of yogurt. That’s a pretty big meal for her these days!
She was tucked into bed for the night at 7 p.m. and my Dad headed back to Hope Lodge.
I am hopeful now that the doctor sees what we have seen.
I hope that getting my mom more alert will make her feel less helpless in all of this.
-Allison
Sleepy, Sleepy, Sleepy.
It’s the word and the mystery of Day 21.
Why does she keep falling asleep?
In my Dad’s words; “Still sleeps and wants to go to sleep at all times.” It is almost like she is sedated and, with all the sleeping, she has not only lost track of the day but of the times of day.
This morning, my Dad got to the hospital early to catch the NP on her morning visit and did just that. The doctor was also there and they want to get her out of this “like-sedated” state. They have changed their tune about her not wanting to get up and move around and have acknowledged that there is a problem. They have stopped the IV Ativan that she has been receiving every 6 hours even though she is only getting a very small amount. My mom agreed ... and then nodded off.
Her lung sounds are improving as are her bowel sounds. All pending tests (nasal wash and blood culture) have come back negative.
And her counts are even better:
WBC: 8.77
Hemoblobin: 9.2
Platelet: 161
ANC: 7.11
She is still receiving TPN over 24 hours and had magnesium this morning (which is not unusual for BMT patients).
My Dad was able to get her to take her meds in an awake moment around 10 a.m. and then she slept for an hour.
She actually woke up on her own at 11 a.m. and got CHG’d, Caphasol, change her pajamas, and sat in the recliner and went right to sleep. At 12:30 p.m., my dad left the room to get the laundry and, when he came back, she had put herself back to bed and was sound asleep.
In the afternoon, the NP came back and said that, in addition to stopping the Ativan, they were also going to stop the Cymbalta (duloxetine) which also has some drowsiness associated with it. I had never really understood why they started her on Cymbalta since she was already on gabapentin for her neuropathy. She last had it at 9:30 a.m. this morning.
The plan is to start switching her back over to pills and away from the IV meds. I take this to mean that her throat is feeling much better. The Declomycin was also discontinued today.
At dinner, my dad felt my mother was a “tiny, tiny” bit more alert, and she ate more – half a bowl of chicken broth, half a cup of tea, and a few spoonfuls of yogurt. That’s a pretty big meal for her these days!
She was tucked into bed for the night at 7 p.m. and my Dad headed back to Hope Lodge.
I am hopeful now that the doctor sees what we have seen.
I hope that getting my mom more alert will make her feel less helpless in all of this.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
I am hesitant about adding this to all the advice and observations you have received, but am doing so anyway on the slight chance that it may be of use.
Have you considered that the strange sleepiness can result from the blood pressure meds your Mom is receiving?
Have you considered that the strange sleepiness can result from the blood pressure meds your Mom is receiving?
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 22
I don’t have much to report today. I was extremely busy and only heard from my Dad a few times. I didn’t even get the counts from him yet.
This morning, my mother was still “kind of sleepy,” but a bit more with it when awake. But still not really alert, according to my Dad. The Fellow came in and said that the Cymbalta will take up to 72 hours to wear off and, otherwise, no changes to any meds today. At 9 a.m., she was sitting up in bed but had fallen asleep.
The doctor said that Dad would need to go the route of “tough love” tomorrow (Sunday). It wasn’t until late in the afternoon that my mother finally got up, cleaned up, and changed and walked 2 laps with her sister. The plan was for her to sit in the chair for a while and order dinner.
It sounds like it was a frustrating day for my Dad.
-Allison
I don’t have much to report today. I was extremely busy and only heard from my Dad a few times. I didn’t even get the counts from him yet.
This morning, my mother was still “kind of sleepy,” but a bit more with it when awake. But still not really alert, according to my Dad. The Fellow came in and said that the Cymbalta will take up to 72 hours to wear off and, otherwise, no changes to any meds today. At 9 a.m., she was sitting up in bed but had fallen asleep.
The doctor said that Dad would need to go the route of “tough love” tomorrow (Sunday). It wasn’t until late in the afternoon that my mother finally got up, cleaned up, and changed and walked 2 laps with her sister. The plan was for her to sit in the chair for a while and order dinner.
It sounds like it was a frustrating day for my Dad.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 23
Change is in the air.
When my Dad arrived tomorrow, he found my mom sitting in the bed, awake and very nauseated. She elected to have Compazine (prochlorperazine) (5mg) via IV. She was only able to drink tea and a glass of water for all her meds. In the future, she will do this with an Isopure drink. Most of her meds have been switched to pills, though she still gets the Zosyn through the IV and the Zofran. The Zosyn should be discontinued soon since that was given in response to her first fever (7-day course). The azithromycin (Zithromax) has been discontinued.
The Fellow just came in. Values are in the normal range and she need to get into some consistent eating before cutting back on TPN. In fact, her counts put in a place where she could be discharged if not for the TPN.
Counts yesterday:
WBC: 9.43
Platelets : 203
Counts today:
WBC: 9.41
Hemoglobin: 8.6
Platelets: 231,
ANC: 8.09
Lagging behind are those red blood cells, which does seem to be a problem for her.
My Dad started the day prepared to push her today. They talked about what needed to happen now. My mom is now taking in the information, and able to respond. For days, she has not responded to questions or been able to keep up with information. This is changing. She completely understands that she need to start eating and getting her exercise.
Her sister came mid-morning and my mom got out of bed, cleaned-up, and changed and did 3 laps. The 3 laps were her own decision – no one had to remind her or push her. She did some of her OT exercises in the chair and rested a bit. .
The nausea seemed to settle. They are ready to put her on 12 hours of TPN a day so she will need to be able to keep up with the nutrition. My dad commented at lunchtime that she was no longer “zonking out”; rather, she is comprehending much more today. She is still napping, but before she does, she tells my Dad to wake her after a certain amount of time.
The doctor was very pleased with what mom is doing today. The 12- hour TPN will start tonight at 6 p.m .The doctor emphasized the importance of nutrition.
By the end of the day, she had done 3 laps 4 separate times today.
Clearly, a turn around has happened.
I think that, when I get back there on Thursday, I will see a big change.
-Allison
Change is in the air.
When my Dad arrived tomorrow, he found my mom sitting in the bed, awake and very nauseated. She elected to have Compazine (prochlorperazine) (5mg) via IV. She was only able to drink tea and a glass of water for all her meds. In the future, she will do this with an Isopure drink. Most of her meds have been switched to pills, though she still gets the Zosyn through the IV and the Zofran. The Zosyn should be discontinued soon since that was given in response to her first fever (7-day course). The azithromycin (Zithromax) has been discontinued.
The Fellow just came in. Values are in the normal range and she need to get into some consistent eating before cutting back on TPN. In fact, her counts put in a place where she could be discharged if not for the TPN.
Counts yesterday:
WBC: 9.43
Platelets : 203
Counts today:
WBC: 9.41
Hemoglobin: 8.6
Platelets: 231,
ANC: 8.09
Lagging behind are those red blood cells, which does seem to be a problem for her.
My Dad started the day prepared to push her today. They talked about what needed to happen now. My mom is now taking in the information, and able to respond. For days, she has not responded to questions or been able to keep up with information. This is changing. She completely understands that she need to start eating and getting her exercise.
Her sister came mid-morning and my mom got out of bed, cleaned-up, and changed and did 3 laps. The 3 laps were her own decision – no one had to remind her or push her. She did some of her OT exercises in the chair and rested a bit. .
The nausea seemed to settle. They are ready to put her on 12 hours of TPN a day so she will need to be able to keep up with the nutrition. My dad commented at lunchtime that she was no longer “zonking out”; rather, she is comprehending much more today. She is still napping, but before she does, she tells my Dad to wake her after a certain amount of time.
The doctor was very pleased with what mom is doing today. The 12- hour TPN will start tonight at 6 p.m .The doctor emphasized the importance of nutrition.
By the end of the day, she had done 3 laps 4 separate times today.
Clearly, a turn around has happened.
I think that, when I get back there on Thursday, I will see a big change.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Yay!
Glad to hear about your mother's turnaround! Looking forward to more good news on Day 24!
Mike
Glad to hear about your mother's turnaround! Looking forward to more good news on Day 24!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 24
The progress continues.
This morning when my Dad got to the hospital, my mom was already up and in the chair. In fact, she had already walked 5 laps on her own. This is a huge change.
TPN has been discontinued during the day. She ordered yogurt and coffee (!), though she is still feeling full all the time. She got down half the yogurt and all of the coffee. She has not complained of nausea.
She had a chest x-ray this morning and the results show a significant improvement over the previous two x-rays. Her vitals are good and her counts are in a good place.
Counts:
WBC: 10.4
Platelets: 256 (!!)
My dad didn’t send the other numbers, but her RBC count is running behind and we are told that this could be the case for several months.
The general need is for my mom to take in more food. Due to the constant “full feeling” she has been having, they are going to do a gastric emptying study tomorrow morning. This is when a tracer is put into a little bit of food. Overnight tonight, she will be NPO [no food or liquid intake by mouth]. I find it ironic that she needs to be pushing food but, tonight, for a study, she can’t take in any food. (I realize, though, that she probably wouldn’t anyways.)
The other thing is to sort out the white coating on my mom’s tongue. When she had mucositis, her tongue was coated with a thick white film. I noticed this last week when her throat was sore and thought it was attributed to thrush. This proved not to be true. This could be affecting her taste. For this they are going to try nystatin, which is a swish and spit.
After breakfast, she did 3 more laps and my Dad notes that the unit is very busy today. Mondays are busy days at Roswell.
She was able to do some steps ups. When this “sleepiness’ started just over a week ago (the same day Cymbalta was started), she could barely do these. She would get mixed up once she was on the step about how to get down. Today she was able to coordinate her steps by herself.
She even read the paper while sitting in the chair (and not drifting off), and she went through the Christmas and get-well cards.
She is talking about wanting to try different food. The coffee was a good start. At lunch, she ordered a grilled cheese sandwich. After weeks of soup and yogurt, she found the sandwich to be very salty. She also had half of a serving of ice cream.
She did take a a 30-minute nap in the afternoon and visited with the woman she had met at the resource center.
I talked to my Dad around 8 p.m. his time and he was still there. Which means my mom didn’t go to bed at 7 p.m. like she has been.
I think, as Mikeb said, another step has been made.
The progress continues.
This morning when my Dad got to the hospital, my mom was already up and in the chair. In fact, she had already walked 5 laps on her own. This is a huge change.
TPN has been discontinued during the day. She ordered yogurt and coffee (!), though she is still feeling full all the time. She got down half the yogurt and all of the coffee. She has not complained of nausea.
She had a chest x-ray this morning and the results show a significant improvement over the previous two x-rays. Her vitals are good and her counts are in a good place.
Counts:
WBC: 10.4
Platelets: 256 (!!)
My dad didn’t send the other numbers, but her RBC count is running behind and we are told that this could be the case for several months.
The general need is for my mom to take in more food. Due to the constant “full feeling” she has been having, they are going to do a gastric emptying study tomorrow morning. This is when a tracer is put into a little bit of food. Overnight tonight, she will be NPO [no food or liquid intake by mouth]. I find it ironic that she needs to be pushing food but, tonight, for a study, she can’t take in any food. (I realize, though, that she probably wouldn’t anyways.)
The other thing is to sort out the white coating on my mom’s tongue. When she had mucositis, her tongue was coated with a thick white film. I noticed this last week when her throat was sore and thought it was attributed to thrush. This proved not to be true. This could be affecting her taste. For this they are going to try nystatin, which is a swish and spit.
After breakfast, she did 3 more laps and my Dad notes that the unit is very busy today. Mondays are busy days at Roswell.
She was able to do some steps ups. When this “sleepiness’ started just over a week ago (the same day Cymbalta was started), she could barely do these. She would get mixed up once she was on the step about how to get down. Today she was able to coordinate her steps by herself.
She even read the paper while sitting in the chair (and not drifting off), and she went through the Christmas and get-well cards.
She is talking about wanting to try different food. The coffee was a good start. At lunch, she ordered a grilled cheese sandwich. After weeks of soup and yogurt, she found the sandwich to be very salty. She also had half of a serving of ice cream.
She did take a a 30-minute nap in the afternoon and visited with the woman she had met at the resource center.
I talked to my Dad around 8 p.m. his time and he was still there. Which means my mom didn’t go to bed at 7 p.m. like she has been.
I think, as Mikeb said, another step has been made.
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
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