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Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
I am starting a SCT next week. I have chosen to do it as an outpatient. Has anyone else gone this route and do you have any pointers for me?
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lfeckenrode
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hi lfeckenrode,
This is the most recent thread here in the forum with postings about a particular patient's stem cell transplant. However, there are a number of additional forum threads with postings about the experiences of other patients, including patients who have done their stem cell transplants on an outpatient basis.
You can find an up-to-date list of all threads about individual stem cell transplant experiences at the bottom of the
"Useful links to other existing forum discussions"
posting in this "Treatments and Side Effects" part of the forum. Just go to the "Useful links" posting and, at the bottom, you'll find a list of all forum threads with postings people have done during the transplant process.
Good luck during your stem cell transplant.
This is the most recent thread here in the forum with postings about a particular patient's stem cell transplant. However, there are a number of additional forum threads with postings about the experiences of other patients, including patients who have done their stem cell transplants on an outpatient basis.
You can find an up-to-date list of all threads about individual stem cell transplant experiences at the bottom of the
"Useful links to other existing forum discussions"
posting in this "Treatments and Side Effects" part of the forum. Just go to the "Useful links" posting and, at the bottom, you'll find a list of all forum threads with postings people have done during the transplant process.
Good luck during your stem cell transplant.
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Rayop wrote:
Congratulations on this wonderful news, Ray. And thanks for sharing it with us.
(Sorry I didn't respond to your posting earlier. I saw it yesterday, but didn't get a chance until now to post.)
My transplant doctor phoned two hours ago. He said I am completely clean of any and all signs of myeloma.
Congratulations on this wonderful news, Ray. And thanks for sharing it with us.
(Sorry I didn't respond to your posting earlier. I saw it yesterday, but didn't get a chance until now to post.)
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Rayop:
Thank you for your kind words. It sounds like you had and still do have a wonderful support system in your husband and sister. As caregivers, we have our own path, but we just want to help in anyway we can. It gives us all a sense of control when sometimes there is so little.
Congrats on the news - it's the news everyone on this board wants to hear.
Cabin Girl:
Sounds like you are just about to get started. It seems to me that being an outpatient for this process should have it's own thread! Maybe your caregivers can keep a log of their own for those to follow. I feel like I am reading more and more about outpatient SCTs and more with people having to find local housing. This brings up a whole new array of challenges. Maybe your caregivers can come up with a list of things they learn during this process to help others in your situation.
Even though you will be in a hotel, I still recommend bringing soft toilet paper and Kleenex. Bring bottled water or gallon jugs of water and lots of paper / plastic cups. Bring a pitcher for ice. Much like I did the night before my mom moved to Hope Lodge, your caregivers will want to give the hotel room a thorough cleaning. Bring lots of Clorox wipes, and a cleanser and paper towel to get into all the corners. Bring your own pillow and things that make you happy.
It seems like you are already thinking about being careful when going back and forth. I feel like that is something that SCT patients do forever. I recommend you start a notebook for your caregivers to keep notes about vitals and meds and observations. This way, when they trade off, the new caregiver can get caught up and add info of their own. There is a lot to keep track of and a lot happening (even when it seems like nothing is happening), so getting it on paper helps. You clearly have a good support system.
lfickenrode:
You are heading into this in a bit of a different way than we did. See what I wrote to Cabingirl above. Will you be living at home or in local housing? I think an outpatient transplant is a whole different thing if you are living at home vs. living in a hotel away from home. Seems like this could be a whole new thread if someone kept a log.
I'm sure your hospital has prepared you well with what to expect and that you have gotten lots of advice about how to help yourself in the process. All the advice we got was very valuable.
I wish you the best.
Thank you for your kind words. It sounds like you had and still do have a wonderful support system in your husband and sister. As caregivers, we have our own path, but we just want to help in anyway we can. It gives us all a sense of control when sometimes there is so little.
Congrats on the news - it's the news everyone on this board wants to hear.
Cabin Girl:
Sounds like you are just about to get started. It seems to me that being an outpatient for this process should have it's own thread! Maybe your caregivers can keep a log of their own for those to follow. I feel like I am reading more and more about outpatient SCTs and more with people having to find local housing. This brings up a whole new array of challenges. Maybe your caregivers can come up with a list of things they learn during this process to help others in your situation.
Even though you will be in a hotel, I still recommend bringing soft toilet paper and Kleenex. Bring bottled water or gallon jugs of water and lots of paper / plastic cups. Bring a pitcher for ice. Much like I did the night before my mom moved to Hope Lodge, your caregivers will want to give the hotel room a thorough cleaning. Bring lots of Clorox wipes, and a cleanser and paper towel to get into all the corners. Bring your own pillow and things that make you happy.
It seems like you are already thinking about being careful when going back and forth. I feel like that is something that SCT patients do forever. I recommend you start a notebook for your caregivers to keep notes about vitals and meds and observations. This way, when they trade off, the new caregiver can get caught up and add info of their own. There is a lot to keep track of and a lot happening (even when it seems like nothing is happening), so getting it on paper helps. You clearly have a good support system.
lfickenrode:
You are heading into this in a bit of a different way than we did. See what I wrote to Cabingirl above. Will you be living at home or in local housing? I think an outpatient transplant is a whole different thing if you are living at home vs. living in a hotel away from home. Seems like this could be a whole new thread if someone kept a log.
I'm sure your hospital has prepared you well with what to expect and that you have gotten lots of advice about how to help yourself in the process. All the advice we got was very valuable.
I wish you the best.
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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 34
My parents continue to be at Hope Lodge. My mom gets downstairs for each meal and even does a lot of her own preparations. The beds in our room are VERY comfortable. Yesterday, she walked down a few flights of stairs. There are a lot of stairs at Hope Lodge, so they are a good opportunity for some exercise.
I left Buffalo yesterday to go to their house to get things ready for her to come home. Before the transplant, my mom and dad cleaned the fridge and all the shelves and drawers in the kitchen. My mom washed the drapes in the their bedroom. A few weeks ago, my Dad has already had the carpets cleaned and washed all the rugs from the bathroom.
I got here about 1 p.m. yesterday and dove right in. There were things to organize that my Dad had brought back from Christmas. Since my mom doesn't remember the presents, I sorted them so that she can rediscover them. The cleaning started with getting the drapes down from the main living space - easy to clean, but a pain to iron! I took some big things to the laundromat to use their over-sized washers and picked up held mail and newspapers.
The rest of the evening and all today was spent washing all throw blankets, bedding, and pillow shams, cleaning all baseboards, molding, furniture, surfaces, doors, and even getting the Swiffer up into the corners of the ceiling and walls where dust and a few cobwebs have formed. The bathrooms where cleaned and all the windows cleaned. The washer and dryer have barely had a rest all day.
It's 9:45 p.m. now on my second day of cleaning. The carpet cleaners came back today and did the couches. They are still drying. All the drapes are back up. The beddings are all remade and fresh. The house smells nice and clean.
My parents house was very clean to begin with, but now every surface has had a going over and I know that the house is ready for my mom to come home.
Tomorrow I will get myself organized before I go back to Buffalo,
We are hopeful that my mom will be able to come home next week.
-Allison
My parents continue to be at Hope Lodge. My mom gets downstairs for each meal and even does a lot of her own preparations. The beds in our room are VERY comfortable. Yesterday, she walked down a few flights of stairs. There are a lot of stairs at Hope Lodge, so they are a good opportunity for some exercise.
I left Buffalo yesterday to go to their house to get things ready for her to come home. Before the transplant, my mom and dad cleaned the fridge and all the shelves and drawers in the kitchen. My mom washed the drapes in the their bedroom. A few weeks ago, my Dad has already had the carpets cleaned and washed all the rugs from the bathroom.
I got here about 1 p.m. yesterday and dove right in. There were things to organize that my Dad had brought back from Christmas. Since my mom doesn't remember the presents, I sorted them so that she can rediscover them. The cleaning started with getting the drapes down from the main living space - easy to clean, but a pain to iron! I took some big things to the laundromat to use their over-sized washers and picked up held mail and newspapers.
The rest of the evening and all today was spent washing all throw blankets, bedding, and pillow shams, cleaning all baseboards, molding, furniture, surfaces, doors, and even getting the Swiffer up into the corners of the ceiling and walls where dust and a few cobwebs have formed. The bathrooms where cleaned and all the windows cleaned. The washer and dryer have barely had a rest all day.
It's 9:45 p.m. now on my second day of cleaning. The carpet cleaners came back today and did the couches. They are still drying. All the drapes are back up. The beddings are all remade and fresh. The house smells nice and clean.
My parents house was very clean to begin with, but now every surface has had a going over and I know that the house is ready for my mom to come home.
Tomorrow I will get myself organized before I go back to Buffalo,
We are hopeful that my mom will be able to come home next week.
-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
Hope things are going well for your mom. Please update us if you can.
Thinking of your family.
Thinking of your family.
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Mississippi Magnolia
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Allison: Did your doctor's tell you to do all this deep cleaning? When my husband had his transplant 3 years ago, we were not told to do any of that.
We had a 17 year old and a 19 year old living at home the 7 weeks we were away; also a dog and cat. I had my cleaning lady come twice during the time we were gone. All she did was the usual dusting, vacuuming, and bathroom cleaning. The only thing we did differently when we got home was to put a "handwashing" reminder note on the door that my kids and their friends use to enter the house.
I don't want to tell you not to do this if your doctor recommended it, but otherwise, don't wear yourselves out!
We had a 17 year old and a 19 year old living at home the 7 weeks we were away; also a dog and cat. I had my cleaning lady come twice during the time we were gone. All she did was the usual dusting, vacuuming, and bathroom cleaning. The only thing we did differently when we got home was to put a "handwashing" reminder note on the door that my kids and their friends use to enter the house.
I don't want to tell you not to do this if your doctor recommended it, but otherwise, don't wear yourselves out!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
A 'spring cleaning' of the house was what we were told. It was in the caregiver meeting we attended and listed in the materials we received. Without a doubt, there are differences in protocols from hospital to hospital. Like with the plants: some say to get them out of the house completely, others say to put them all in one room and not to touch them.
The folks here at Hope Lodge are all doing similar things as they prepare to go home; and since we are all attending the same 'program', it makes sense.
The folks here at Hope Lodge are all doing similar things as they prepare to go home; and since we are all attending the same 'program', it makes sense.
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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 38
My mom is bored!
After discharge on Day 31, we had the follow-up appointment on Day 32, and then a single vial of blood taken on Day 35 to test for the Lovenox levels.
This afternoon is the doctor's appointment preceded by blood work. We are all hoping to be told to go home, which we would do tomorrow.
Everyone in the house says my mom looks good. She is certainly getting stronger. She is eating well and walking down all three flights of stairs from the room (she hasn't tried going up yet). I think that, once home, it will be easier to be active because she won't be so limited to the kitchen and the room.
Fingers crossed. More later.
My mom is bored!
After discharge on Day 31, we had the follow-up appointment on Day 32, and then a single vial of blood taken on Day 35 to test for the Lovenox levels.
This afternoon is the doctor's appointment preceded by blood work. We are all hoping to be told to go home, which we would do tomorrow.
Everyone in the house says my mom looks good. She is certainly getting stronger. She is eating well and walking down all three flights of stairs from the room (she hasn't tried going up yet). I think that, once home, it will be easier to be active because she won't be so limited to the kitchen and the room.
Fingers crossed. More later.
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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 38 (continued)
... and it's later.
Roswell on Monday's is generally bedlam. But, on Martin Luther King Day, it is very, very quiet. We knew it was different when we pulled up and the valet area was completely empty. My Dad dropped us off and my Mom and I went straight to Phlebotomy. This place often has a line down the hall, but today, she walked right in. And, as it turned out, parking was free today.
Then we were off to the BMT clinic. Usually, there is a fairly long wait as they wait for your labs to process, but, this time, my mom was taken in very quickly, She had vitals and got a new medical bracelet - a smaller one, as the original one kept falling off.
First the RN goes over any changes, concerns and questions. Then the PA comes in and reviews the labs and does a brief exam.
Counts:
WBC: 4.22
Platelets: 343
Hemoglobin: 10.4
He said her counts were down a little but all within range.
Then the doctor came in. Though her Lovenox levels are a little low, he said just to leave her on her current dosage and it seems clear that my mom no longer needs her current dosage of BP meds. That was cut in half.
After some conversation, and my mom making it clear that she would like to go home, the doctor said yes. No dusting! Put plants in one room and close the door. But she can load the dishwasher and do laundry and even have salad IF it's prepared at home and if someone else washes everything.
The topic of salad has become a popular issue at Hope Lodge, which is full of people craving salads!
He talked about what is next. Next week, she will come back just for labs and then stick around to make sure the counts are fine. He said that it is not unusual to need a growth factor shot as counts bounce around. Then another week after that to see the NP or PA and have more labs. All this is leading to re-staging. He does that on or around Days 80 to 90, and this includes a bone marrow biopsy, skeletal survey, 24-hour urine, labs work, etc. Then, two weeks after that, my mom returns to meet with him to go over all the results. I sure like the idea of being able to "re-stage".
Two hours after walking into Roswell, we were walking out.
On Day 32 I talked about the bracelet that Roswell gives it's BMT patients: Below is a photo -
Back at Hope Lodge, my mom already had her suitcase out by the time I got back to the room after stopping in the kitchen! We will leave in the morning.
I need to make another comment about Hope Lodge and the generosity of people who support it. Today, a mom and her high school daughter spent the afternoon making lasagnas for everyone for dinner. The daughter was doing community service house for the National Honor Society and the mom has been volunteering at Hope Lodge for some time. In addition, they brought fresh bread, homemade cookies and brownies, and a great big salad (for the caregivers). Everyone is very much looking forward to dinner.
-Allison
... and it's later.
Roswell on Monday's is generally bedlam. But, on Martin Luther King Day, it is very, very quiet. We knew it was different when we pulled up and the valet area was completely empty. My Dad dropped us off and my Mom and I went straight to Phlebotomy. This place often has a line down the hall, but today, she walked right in. And, as it turned out, parking was free today.
Then we were off to the BMT clinic. Usually, there is a fairly long wait as they wait for your labs to process, but, this time, my mom was taken in very quickly, She had vitals and got a new medical bracelet - a smaller one, as the original one kept falling off.
First the RN goes over any changes, concerns and questions. Then the PA comes in and reviews the labs and does a brief exam.
Counts:
WBC: 4.22
Platelets: 343
Hemoglobin: 10.4
He said her counts were down a little but all within range.
Then the doctor came in. Though her Lovenox levels are a little low, he said just to leave her on her current dosage and it seems clear that my mom no longer needs her current dosage of BP meds. That was cut in half.
After some conversation, and my mom making it clear that she would like to go home, the doctor said yes. No dusting! Put plants in one room and close the door. But she can load the dishwasher and do laundry and even have salad IF it's prepared at home and if someone else washes everything.
The topic of salad has become a popular issue at Hope Lodge, which is full of people craving salads!
He talked about what is next. Next week, she will come back just for labs and then stick around to make sure the counts are fine. He said that it is not unusual to need a growth factor shot as counts bounce around. Then another week after that to see the NP or PA and have more labs. All this is leading to re-staging. He does that on or around Days 80 to 90, and this includes a bone marrow biopsy, skeletal survey, 24-hour urine, labs work, etc. Then, two weeks after that, my mom returns to meet with him to go over all the results. I sure like the idea of being able to "re-stage".
Two hours after walking into Roswell, we were walking out.
On Day 32 I talked about the bracelet that Roswell gives it's BMT patients: Below is a photo -
- Medic Alert Bracelet Other side.jpg (75.15 KiB) Viewed 330 times
Back at Hope Lodge, my mom already had her suitcase out by the time I got back to the room after stopping in the kitchen! We will leave in the morning.
I need to make another comment about Hope Lodge and the generosity of people who support it. Today, a mom and her high school daughter spent the afternoon making lasagnas for everyone for dinner. The daughter was doing community service house for the National Honor Society and the mom has been volunteering at Hope Lodge for some time. In addition, they brought fresh bread, homemade cookies and brownies, and a great big salad (for the caregivers). Everyone is very much looking forward to dinner.
-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
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