Another big thank you to Allison for your detailed journal of your experience throughout this process. My husband will likely have an ASCT in March, and this has been hugely helpful reading (packing list - awesome!!). I've loved the daily updates as your mom has regained some of her strength.
Lots of healthy wishes for your mom!!
Forums
-
EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
I have read every word you have posted.
I also thank you for the details, as I head for my SCT next week. I now know what to expect - and can plan on what to take to the hospital, thanks to your helpful list.
Keep posting, and I will keep reading.
Wishing your mom a speedy recovery. She is so blessed to have such a supportive family surrounding her !
I also thank you for the details, as I head for my SCT next week. I now know what to expect - and can plan on what to take to the hospital, thanks to your helpful list.
Keep posting, and I will keep reading.
Wishing your mom a speedy recovery. She is so blessed to have such a supportive family surrounding her !
-
Mississippi Magnolia
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Sharon, EF11, Magnolia and others:
This is EXACTLY what I wanted to do with this thread. I really just wanted to get the information out there. I do hope it helps to take the mystery and worry out of the experience.
I kind of can't believe that I posted 31 days worth of posts! It was a long time ago that I started, and yet, when you look at it all in one place, it doesn't seem so long.
I wish you all the best, both as patients and caregivers, with what is to come.
This is EXACTLY what I wanted to do with this thread. I really just wanted to get the information out there. I do hope it helps to take the mystery and worry out of the experience.
I kind of can't believe that I posted 31 days worth of posts! It was a long time ago that I started, and yet, when you look at it all in one place, it doesn't seem so long.
I wish you all the best, both as patients and caregivers, with what is to come.
-
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
Congratulations, Allison! And congratulations to your mother!
I've been reading all of your posts, although sometimes a day or two behind.
I'm so happy that your mother is doing well and has moved on to the next phase of recovery after her transplant. Your early posts reminded me of the early days in my month-long time in the hospital for my transplant. Your middle posts reminded me of the frustrating days waiting for my blood counts to finally start to go up again. And your past few posts reminded me of the happy day when I finally was discharged.
One thing to watch out for that I had not expected - your mother (and maybe you and/or your father, since you've been so instrumental in caring for her) may have "extra fear" about doing some little thing wrong that will lead to a health setback after being released from the hospital.
When you're in the hospital, you have the doctors and nurses caring for you, and you can't make many decisions for yourself. After you're out, you're on your own, and it was a little scary for me at first. The do's and don't's that you're given upon discharge are pretty detailed, but there are still lots of grey areas. Initially, I worried way too much that I would mess up in those grey areas and cause myself to get sick, but eventually I realized that I was ok and didn't need to be so worried.
Your mother is lucky to have such a caring daughter, and your father too. You all sound like an awesome family in supporting each other.
Best wishes to all of you in this next phase and beyond!
Mike
I've been reading all of your posts, although sometimes a day or two behind.
I'm so happy that your mother is doing well and has moved on to the next phase of recovery after her transplant. Your early posts reminded me of the early days in my month-long time in the hospital for my transplant. Your middle posts reminded me of the frustrating days waiting for my blood counts to finally start to go up again. And your past few posts reminded me of the happy day when I finally was discharged.
One thing to watch out for that I had not expected - your mother (and maybe you and/or your father, since you've been so instrumental in caring for her) may have "extra fear" about doing some little thing wrong that will lead to a health setback after being released from the hospital.
When you're in the hospital, you have the doctors and nurses caring for you, and you can't make many decisions for yourself. After you're out, you're on your own, and it was a little scary for me at first. The do's and don't's that you're given upon discharge are pretty detailed, but there are still lots of grey areas. Initially, I worried way too much that I would mess up in those grey areas and cause myself to get sick, but eventually I realized that I was ok and didn't need to be so worried.
Your mother is lucky to have such a caring daughter, and your father too. You all sound like an awesome family in supporting each other.
Best wishes to all of you in this next phase and beyond!
Mike
-
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 32
A whole night without a single interruption!
My mom slept well last night, appreciating the lack of interruptions during the night. By default, my Dad and I got a lot of sleep too, since we all went to bed when she did!
We were up very early to get to Roswell for her 6:30 a.m. labs followed by her first post-transplant clinic visit. We went armed with her mask, all the meds, and her med list. I should also mention that it was 9 degrees F (-13 C). After being in a very warm hospital room and a very warm Hope Lodge, the cold is a bit of a shock.
The lab work went quickly (2 vials), and then we headed up to the 3rd floor to wait. About 7:30 a.m. we got into an exam room and they took vitals. Her temp was agreeably normal and her BP was a bit low.
We then sat in the exam room with the nurse, who asked a lot of questions about how my mom was doing and then gave us more papers. The first was another copy of the letter to give to other hospitals from the BMT clinic explaining my mom’s status as a transplant patient and the importance of irradiated blood. She was given a medic alert bracelet – green rubber thing like so many people wear - that says Bone Marrow Transplant –Irradiated Blood Products only. So there’s the answer to that question. This came up early on in this thread.
She went over the phone numbers for the clinic and the after-hours number and a list of instructions and “when to call’ the clinic.
They went like this:
Also, we received a paper called “Activity restrictions for transplant patients.” We had received a similar document in the caregiver meeting. I thought I would list the highlights:
Then the nurse had a look at all of the bottles of meds and filled the first few days of the med box. She promised that, after today, appointments won’t be so early. They always make the first appointment after discharge very early to make sure that everything is going okay and that the patient and caregiver understand the meds.
After she left, my mom took her morning meds (needed to wait until after the blood work).
The PA came in. This is the same PA we saw while in the unit and previous to the transplant. He reviewed the morning blood work, which was very good. Asked many of the same questions as the nurse and did a brief exam. He noted that the Lovenox blood test from January 10 came back showing my mom’s dose was a little on the low side. Regarding the low BP, the PA said to keep an eye on it. He said it is not unusual for people with elevated BP to come out of a transplant with low BP. He also had a suggestion to help my mom take her pills. She has trouble swallowing them and then her stomach doesn’t want them. He said that it would take a little time for the body to get used to them and to take a Zofran 30 minutes before taking the pills. Then, in about a week, back off the Zofran.
In fact, one of the other guests at Hope Lodge said he did the same thing about 30 minutes before eating so that he COULD eat. He said it helped a lot.
After more waiting, the BMT doc on the clinic service came in. The Lovenox dose would go to once a day, but the amount would be increased. My mother had already had her morning dose, so the clinic would give her a little more to make up for the new dosage. A new shipment of Lovenox would be ordered for delivery to Hope Lodge today. A weeks worth of unused Lovenox anyone? He said her counts were good, and it was good to see arm swelling is still diminishing.
This whole process, with the waiting of the pharmacy to send up the extra dose of Lovenox for today, took 4 hours. We are no stranger to long days and waits here. Back at Hope Lodge for tea and toast and my mom was more than ready to lie down. My dad went for some groceries.
The next visit to Roswell won’t be until Friday. That will be for some blood work to check the Lovenox levels. That test has to be 4 hours after her morning dose. After that, she doesn’t have to go back until Monday for an appointment with her regular BMT doctor.
Today’s doctor actually asked us what we were going to do with our time in Buffalo! I guess we will need to find something to do!
True to form, and as we were warned, my mom mostly wants to sleep. She had a nap in the morning and is napping again in the afternoon. She has to go down to the kitchen for meals, which gets her moving and socializing with others.
Since we have moved to a different room at Hope Lodge, I have become aware of even more that this place has to offer. A treadmill and exerciser for the patients and even a children’s play area full of books, games and toys.
While we were in the kitchen, one of the managers passes around a note saying that two women from a local church are cooking dinner for everyone tomorrow night here at Hope Lodge. Isn’t that so nice? There is another group from the GM plant that does that once a month too. We haven’t encountered that yet, but some others in the house have told us about it. I am overwhelmed by gestures like these that brighten up and make a little easier each day.
A whole night without a single interruption!
My mom slept well last night, appreciating the lack of interruptions during the night. By default, my Dad and I got a lot of sleep too, since we all went to bed when she did!
We were up very early to get to Roswell for her 6:30 a.m. labs followed by her first post-transplant clinic visit. We went armed with her mask, all the meds, and her med list. I should also mention that it was 9 degrees F (-13 C). After being in a very warm hospital room and a very warm Hope Lodge, the cold is a bit of a shock.
The lab work went quickly (2 vials), and then we headed up to the 3rd floor to wait. About 7:30 a.m. we got into an exam room and they took vitals. Her temp was agreeably normal and her BP was a bit low.
We then sat in the exam room with the nurse, who asked a lot of questions about how my mom was doing and then gave us more papers. The first was another copy of the letter to give to other hospitals from the BMT clinic explaining my mom’s status as a transplant patient and the importance of irradiated blood. She was given a medic alert bracelet – green rubber thing like so many people wear - that says Bone Marrow Transplant –Irradiated Blood Products only. So there’s the answer to that question. This came up early on in this thread.
She went over the phone numbers for the clinic and the after-hours number and a list of instructions and “when to call’ the clinic.
They went like this:
- If temp is 100.5 F (38 C) then wait an hour and take again
- If have chills, wait 30 min and take temperature. Chills are often a sign of fever.
- Cough
- Shortness of breath
- Avoid exposure to chicken pox, measles, shingles
- Avoid people who have had a live vaccine including adults who have had the shingles vaccine for 2 weeks after
- Report bleeding, bruising
- Mouth sores
- Nausea, vomiting
- Pain – new or increased
- Sore thorat
- Loss of appetite
- Change in taste
- Change in skin – dry, red, rash, bruising
- Decreased energy
- Diarrhea
- Don’t add or subtract any meds
Also, we received a paper called “Activity restrictions for transplant patients.” We had received a similar document in the caregiver meeting. I thought I would list the highlights:
- Wear a mask when in the hospital, in crowds, or around sick people
- Caution in restaurant dining until 3 months post transplant
- No driving until cleared by the doctor
- No being alone until 2 weeks post discharge (at the caregiver meeting, we were told no leaving patient alone for more than 20 minutes)
- No gardening or lawn maintenance for 3 months. (The BMT doctor would like my mom to wait a year.)
- Can do a gentle workout if platelets less than 50,000, and a high impact workout when greater than 100,000.
- No woodworking or chopping wood for at least 3 months
- No hot tub use for 3 months
- No swimming in lakes or streams for 3 months
- Use a swimming pool only early in the day (info given yesterday said no swimming pools)
- No fishing off motorboat and no baiting hooks or cleaning fish for 3 months
- No cleaning meat after hunting for at least 3 months
- No new pets for 6 months
- No birds
- No aquarium cleaning, no litter box cleaning, no reptiles or amphibians for 6 months
- No dried flowers for 3 months
- No Christmas trees for 3 months
- No transplanting housing plants
- Discuss all travel with BMT doctor
- When time for re-immunizations, have them done at the BMT clinic
- Carry emergency letter
- Use only bottled water when traveling and when in other countries.
- Always know name and location of appropriate health care facility when traveling
- No handling dirty laundry for at least 2 weeks post discharge (another document we received says 3 months)
- No cleaning bathrooms for 2 weeks post discharge
- No raw food prep for a minimum of 3 months.
- Wait a minimum of 2 weeks post discharge.
- Consult with doctor.
Then the nurse had a look at all of the bottles of meds and filled the first few days of the med box. She promised that, after today, appointments won’t be so early. They always make the first appointment after discharge very early to make sure that everything is going okay and that the patient and caregiver understand the meds.
After she left, my mom took her morning meds (needed to wait until after the blood work).
The PA came in. This is the same PA we saw while in the unit and previous to the transplant. He reviewed the morning blood work, which was very good. Asked many of the same questions as the nurse and did a brief exam. He noted that the Lovenox blood test from January 10 came back showing my mom’s dose was a little on the low side. Regarding the low BP, the PA said to keep an eye on it. He said it is not unusual for people with elevated BP to come out of a transplant with low BP. He also had a suggestion to help my mom take her pills. She has trouble swallowing them and then her stomach doesn’t want them. He said that it would take a little time for the body to get used to them and to take a Zofran 30 minutes before taking the pills. Then, in about a week, back off the Zofran.
In fact, one of the other guests at Hope Lodge said he did the same thing about 30 minutes before eating so that he COULD eat. He said it helped a lot.
After more waiting, the BMT doc on the clinic service came in. The Lovenox dose would go to once a day, but the amount would be increased. My mother had already had her morning dose, so the clinic would give her a little more to make up for the new dosage. A new shipment of Lovenox would be ordered for delivery to Hope Lodge today. A weeks worth of unused Lovenox anyone? He said her counts were good, and it was good to see arm swelling is still diminishing.
This whole process, with the waiting of the pharmacy to send up the extra dose of Lovenox for today, took 4 hours. We are no stranger to long days and waits here. Back at Hope Lodge for tea and toast and my mom was more than ready to lie down. My dad went for some groceries.
The next visit to Roswell won’t be until Friday. That will be for some blood work to check the Lovenox levels. That test has to be 4 hours after her morning dose. After that, she doesn’t have to go back until Monday for an appointment with her regular BMT doctor.
Today’s doctor actually asked us what we were going to do with our time in Buffalo! I guess we will need to find something to do!
True to form, and as we were warned, my mom mostly wants to sleep. She had a nap in the morning and is napping again in the afternoon. She has to go down to the kitchen for meals, which gets her moving and socializing with others.
Since we have moved to a different room at Hope Lodge, I have become aware of even more that this place has to offer. A treadmill and exerciser for the patients and even a children’s play area full of books, games and toys.
- Fitness area at Hope Lodge.jpg (64.74 KiB) Viewed 569 times
- Children's Play area at Hope Lodge.jpg (99.5 KiB) Viewed 569 times
While we were in the kitchen, one of the managers passes around a note saying that two women from a local church are cooking dinner for everyone tomorrow night here at Hope Lodge. Isn’t that so nice? There is another group from the GM plant that does that once a month too. We haven’t encountered that yet, but some others in the house have told us about it. I am overwhelmed by gestures like these that brighten up and make a little easier each day.
- Dinner at Hope.jpg (85.15 KiB) Viewed 551 times
-
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 to say that I had read about that in advance of this whole process. About how leaving the hospital can be kind of scary. I admit that my mom is not as careful as I would like her to be. She doesn't remember everything that we do of what happened and hasn't gone over the materials the way I have. I am also a 'rule follower'. I take what I read and am told to heart. In a way, this will be even easier once she can go home and be in control of the environment. Here at Hope Lodge, there are lots of people and shared spaces.
Mostly, thanks for your support and wise words on this thread and others.
Allison
Mostly, thanks for your support and wise words on this thread and others.
Allison
-
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 just found your posts tonite and read them all from start to finish. Thank you so very much for posting about the journey.
My sister was diagnosed in December with myeloma and will receive 4 rounds of RVD and then a stem cell transplant in San Francisco. Your posts are so very helpful, I can't even tell you.
I wish your mother, father, brother and you the best. Thank you!
My sister was diagnosed in December with myeloma and will receive 4 rounds of RVD and then a stem cell transplant in San Francisco. Your posts are so very helpful, I can't even tell you.
I wish your mother, father, brother and you the best. Thank you!
-
Drucilla
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Allison,
"No swimming in lakes or streams for 3 months."
I guess that means your mom won't be doing any Polar Bear plunge in Lake Erie this winter. Maybe next year.
Mike
"No swimming in lakes or streams for 3 months."
I guess that means your mom won't be doing any Polar Bear plunge in Lake Erie this winter. Maybe next year.
Mike
-
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
Dear Allison,
You have been such a wonderful caregiver for your mom, and I'm so happy to hear how she has progressed. The information you gave and Mike gave is so important.
I had my SCT on November 1, 2014 in Tampa, FL, at Moffitt. I was released to go outpatient at Day +16. I stayed in a hotel Moffitt helped me get nearby until my outpatient follow-up completed on November 24th and I could go home. I qualified for financial assistance, so they covered 75% of the cost of the studio apartment where me and my sister stayed. Hope Lodge was not really an option because my husband Mark was my caregiver for 15 days, and then my sister arrived and they swapped off the task so he could go back to work.
My SCT was autologous. It went quite usual, and all the same issues your mom had in the first 12 days were about the same. I had bowel issues, and my diarrhea was horrible. Developed something I can't recall the exact name, but sounds like "Ariel" . They monitored everything in and everything out so carefully. I started out enjoying the food, then the nausea set in, my taste buds changed, and I did not wish to eat.
Long story short, I am glad you documented the process. I didn't. My sister took notes. They tell me I was in LaLa land for 3 days, I did not recall being so out of it. All and all, other than the diarrhea and some vomiting a few days, it really was not that bad a thing to do. Hard being cooped up in a room for 16 days. I walked a lot, did my laps. It was wonderful Mark stayed in the room with me, then my sister took over when he left. The hospital treated Mark with such respect, for they knew we are married, and that was before Florida respected same-sex marriages.
My transplant doctor phoned two hours ago. He said I am completely clean of any and all signs of myeloma. OMG! Thank you Lord! Been fighting this since 2004. The transplant worked. I barely got enough stem cells for another transplant for storage, but I got them if needed. To anyone facing a SCT, there is nothing sweeter than hearing the words " no cancer found". It can happen, and to each and every one who went through a SCT, I wish you the same results.
And to each and every caregiver who supported their loved one, I say to you, you are angels. Angels of Mercy to us that needed you so very much to get through the toughest thing we had to do, ever. Thank you, Allison, and every other caregiver everywhere.
Ray Op
You have been such a wonderful caregiver for your mom, and I'm so happy to hear how she has progressed. The information you gave and Mike gave is so important.
I had my SCT on November 1, 2014 in Tampa, FL, at Moffitt. I was released to go outpatient at Day +16. I stayed in a hotel Moffitt helped me get nearby until my outpatient follow-up completed on November 24th and I could go home. I qualified for financial assistance, so they covered 75% of the cost of the studio apartment where me and my sister stayed. Hope Lodge was not really an option because my husband Mark was my caregiver for 15 days, and then my sister arrived and they swapped off the task so he could go back to work.
My SCT was autologous. It went quite usual, and all the same issues your mom had in the first 12 days were about the same. I had bowel issues, and my diarrhea was horrible. Developed something I can't recall the exact name, but sounds like "Ariel" . They monitored everything in and everything out so carefully. I started out enjoying the food, then the nausea set in, my taste buds changed, and I did not wish to eat.
Long story short, I am glad you documented the process. I didn't. My sister took notes. They tell me I was in LaLa land for 3 days, I did not recall being so out of it. All and all, other than the diarrhea and some vomiting a few days, it really was not that bad a thing to do. Hard being cooped up in a room for 16 days. I walked a lot, did my laps. It was wonderful Mark stayed in the room with me, then my sister took over when he left. The hospital treated Mark with such respect, for they knew we are married, and that was before Florida respected same-sex marriages.
My transplant doctor phoned two hours ago. He said I am completely clean of any and all signs of myeloma. OMG! Thank you Lord! Been fighting this since 2004. The transplant worked. I barely got enough stem cells for another transplant for storage, but I got them if needed. To anyone facing a SCT, there is nothing sweeter than hearing the words " no cancer found". It can happen, and to each and every one who went through a SCT, I wish you the same results.
And to each and every caregiver who supported their loved one, I say to you, you are angels. Angels of Mercy to us that needed you so very much to get through the toughest thing we had to do, ever. Thank you, Allison, and every other caregiver everywhere.
Ray Op
-
rayop - Name: Rayop
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2004
- Age at diagnosis: 47
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Dear Allison,
You are amazing to have documented your mother's transplant with such detail. I have read each and every word you wrote. I will be undergoing my auto stem cell transplant in 3 weeks at Mayo in Rochester. I have been told that I will be an "outpatient" for the entire process, so I have reserved a hotel near the hospital for 5 weeks.
I was told that Mayo is trying to do many of their multiple myeloma patient's transplants on an outpatient basis and they require the patient to have lodging within 10 minutes or less of the hospital and to have a caregiver with you at all times (day and night).
I will have 3 caregivers who will rotate turns: my husband, my sister, and my best friend. I'm getting very nervous about the entire procedure and I'm worried about being able to maintain that much needed sterile environment, knowing I will be going back and forth between the hospital and hotel each day. So, being aware of always wearing a mask, not touching elevator buttons or door handles, etc, will need to be in the forefront of my mind at all times.
I wish the very best recovery for your mother. You, your father, and your brother should be commended for the wonderful gift of time and love that you gave to your Mom when she needed all of you the most.
Thank you again so much for sharing your Mom's story and all the details. It will certainly help me as I go forward with my transplant.
You are amazing to have documented your mother's transplant with such detail. I have read each and every word you wrote. I will be undergoing my auto stem cell transplant in 3 weeks at Mayo in Rochester. I have been told that I will be an "outpatient" for the entire process, so I have reserved a hotel near the hospital for 5 weeks.
I was told that Mayo is trying to do many of their multiple myeloma patient's transplants on an outpatient basis and they require the patient to have lodging within 10 minutes or less of the hospital and to have a caregiver with you at all times (day and night).
I will have 3 caregivers who will rotate turns: my husband, my sister, and my best friend. I'm getting very nervous about the entire procedure and I'm worried about being able to maintain that much needed sterile environment, knowing I will be going back and forth between the hospital and hotel each day. So, being aware of always wearing a mask, not touching elevator buttons or door handles, etc, will need to be in the forefront of my mind at all times.
I wish the very best recovery for your mother. You, your father, and your brother should be commended for the wonderful gift of time and love that you gave to your Mom when she needed all of you the most.
Thank you again so much for sharing your Mom's story and all the details. It will certainly help me as I go forward with my transplant.
-
CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
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