Mikeb (AKA Wise Soul) – It certainly is interesting to see all the different protocols followed by the the different treatment centers. Roswell routine is to start the immunizations on Day 180 and, no matter what the titers show, for the first round they give everything.
My mom's post transplant blood work shows that she is deficient in pertussis, meningitis, pneumonia, and mumps. That is something of note since we were told that the transplant would wipe everything else. She even held on to her flu shot, which she had in the fall - the doctor told her to get it "even though the transplant would wipe it out."
The doctor mentioned that because of the mumps deficiency she has to be particularly careful. She will need an MMR vaccine for sure.
The BMT doc said that he is a little late with her as far as the re-staging. Usually, they like to do it around Day 80 and then get her back to the oncologist who likes to get started with maintenance right away. Like with everything else, we all know that there are many different protocols to this, with some waiting several months to get started.
I guess it's clear that there is no set way to handle stem cell transplants. The idea of having one while living at home or in a hotel nearby seems unimaginable for me, but many places do it that way and are successful.
The exchange of information that forums like these allow put it all right at our finger tips and it certainly is interesting see the variations in treatments.
Forums
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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
Hi Allison,
Your confession and your Mom's reaction to reading about herself are great! Your post about that has me smiling today. And that's especially good because I'm not in a good mood otherwise because I'm doing my taxes.
Hi Allison's Mom!
I'm sure you know this, but you have a very special daughter. She's made a major contribution to our multiple myeloma community through her posts about how you were doing.
And because of her posts, you had a lot of Beacon readers rooting hard for you through your ups and downs at Roswell. We're happy that you are doing so well now!
From Allison's posts, you sound like a resilient patient and a great mother.
Best wishes to you, Allison, and the rest of your family as you continue your multiple myeloma journey!
Mike
Your confession and your Mom's reaction to reading about herself are great! Your post about that has me smiling today. And that's especially good because I'm not in a good mood otherwise because I'm doing my taxes.
Hi Allison's Mom!
I'm sure you know this, but you have a very special daughter. She's made a major contribution to our multiple myeloma community through her posts about how you were doing.
And because of her posts, you had a lot of Beacon readers rooting hard for you through your ups and downs at Roswell. We're happy that you are doing so well now!
From Allison's posts, you sound like a resilient patient and a great mother.
Best wishes to you, Allison, and the rest of your family as you continue your multiple myeloma journey!
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
Hello Everyone,
I am Allison's Mom.
Yes, Mike, I am very aware that Allison is a very special daughter.
I hope her writing is helpful to others. However, it doesn't really completely show the extent of Allison's care to me – both physical care and emotional support.
I am more than blessed to have such wonderful support from my family. Words cannot fully express my gratitude.
I also extend my best wishes to those Beacon readers experiencing this disease.
Ann
I am Allison's Mom.
Yes, Mike, I am very aware that Allison is a very special daughter.
I hope her writing is helpful to others. However, it doesn't really completely show the extent of Allison's care to me – both physical care and emotional support.
I am more than blessed to have such wonderful support from my family. Words cannot fully express my gratitude.
I also extend my best wishes to those Beacon readers experiencing this disease.
Ann
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Annlee523
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hi Ann!
I'm glad I can call you by your real name now instead of just "Allison's Mom," although you are pretty famous around here when going by the nom de plume of "Allison's Mom".
Best wishes to you too!
Mike
I'm glad I can call you by your real name now instead of just "Allison's Mom," although you are pretty famous around here when going by the nom de plume of "Allison's Mom".
Best wishes to you too!
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 365
It’s has been a year since my Mom’s transplant. In fact, December 12, 2014 was Day 0.
I am constantly ‘noticing’ how different this year is from the last. And not just that is is 70 degrees today! Last year it was in the negative numbers! Last year, I spent the holidays with many of you (in a way) - reporting daily from the hospital. I still check on all of you.
It’s a year later.
I am happy to report that my mom is doing well. She has monthly blood work and monthly visits with the specialist at Roswell Park. She has a Zometa infusion on the same day as the blood work each month and is on daily Revlimid (15mg). She started getting re-immunized in late spring; and her hair as grown back REALLY curly.
The immunizations are supposed to take two years. Even if she kept any of the titers, the BMT clinic re-does all of them. She has been immunized for pneumonia, tetanus, diphtheria, Hep B, and meningitis. (maybe some others) Her next ones won’t be until next June. She is also on an antibiotic on the weekends and is supposed to do that for a year. Her one-year appointment with the BMT clinic is in January.
In July, she was hospitalized with pneumonia. And then caught C-diff. She has had a few fevers and a few visits to her local ER out of caution. She had a series of PT appointments to help with her leg and hip (a femur fracture that started all of this) when it started to bother her, and has had some success with massage and reflexology for the neuropathy. The neuropathy was worse at night and she says that its not as bad now, or, possibly, that she isn’t paying attention to it anymore.
I asked her today if she is doing what she wants to be doing. She answered, “Almost”. She is playing bridge, going to book club, serving on some boards, and having friends over for coffee. She and my Dad will be doing more traveling farther afield this next year. She said that the most noticeable thing is the fatigue; which she attributes to the Revlimid. And, as you all know, she has to be most careful about getting an infection.
From my perspective, her energy level is night and day from this spring to now. She and my Dad have cautiously made a few trips, starting with a couple of over night trips by car, then a one-week trip and most recently, a trip involving a flight. This past weekend, the whole family got together – complete with the Grandkids. My mom has really missed spending time with them (my brother’s kids). We will be heading back to my brother’s house for Christmas and everyone is excited.
This will be a very different Christmas this year in our family. And, as my mom said, “She might even remember it this year!”
Happy Holidays everyone.
Allison (and my mom)
It’s has been a year since my Mom’s transplant. In fact, December 12, 2014 was Day 0.
I am constantly ‘noticing’ how different this year is from the last. And not just that is is 70 degrees today! Last year it was in the negative numbers! Last year, I spent the holidays with many of you (in a way) - reporting daily from the hospital. I still check on all of you.
It’s a year later.
I am happy to report that my mom is doing well. She has monthly blood work and monthly visits with the specialist at Roswell Park. She has a Zometa infusion on the same day as the blood work each month and is on daily Revlimid (15mg). She started getting re-immunized in late spring; and her hair as grown back REALLY curly.
The immunizations are supposed to take two years. Even if she kept any of the titers, the BMT clinic re-does all of them. She has been immunized for pneumonia, tetanus, diphtheria, Hep B, and meningitis. (maybe some others) Her next ones won’t be until next June. She is also on an antibiotic on the weekends and is supposed to do that for a year. Her one-year appointment with the BMT clinic is in January.
In July, she was hospitalized with pneumonia. And then caught C-diff. She has had a few fevers and a few visits to her local ER out of caution. She had a series of PT appointments to help with her leg and hip (a femur fracture that started all of this) when it started to bother her, and has had some success with massage and reflexology for the neuropathy. The neuropathy was worse at night and she says that its not as bad now, or, possibly, that she isn’t paying attention to it anymore.
I asked her today if she is doing what she wants to be doing. She answered, “Almost”. She is playing bridge, going to book club, serving on some boards, and having friends over for coffee. She and my Dad will be doing more traveling farther afield this next year. She said that the most noticeable thing is the fatigue; which she attributes to the Revlimid. And, as you all know, she has to be most careful about getting an infection.
From my perspective, her energy level is night and day from this spring to now. She and my Dad have cautiously made a few trips, starting with a couple of over night trips by car, then a one-week trip and most recently, a trip involving a flight. This past weekend, the whole family got together – complete with the Grandkids. My mom has really missed spending time with them (my brother’s kids). We will be heading back to my brother’s house for Christmas and everyone is excited.
This will be a very different Christmas this year in our family. And, as my mom said, “She might even remember it this year!”
Happy Holidays everyone.
Allison (and my mom)
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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
Hello Allison:
Thank you very much for the update. I hope the recovery for your mom and your whole family continues. Best Regards,
Thank you very much for the update. I hope the recovery for your mom and your whole family continues. Best Regards,
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JPC - Name: JPC
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hello Allison!
It's absolutely wonderful to hear from you, and all the more so because you have good news to report about how your mother is doing. Thank you so much for your update. I hope we will continue to get yearly updates on how your mother is doing for many, many years to come ...
Happy holidays to you, your mother, and all of your family,
Cheryl
It's absolutely wonderful to hear from you, and all the more so because you have good news to report about how your mother is doing. Thank you so much for your update. I hope we will continue to get yearly updates on how your mother is doing for many, many years to come ...
Happy holidays to you, your mother, and all of your family,
Cheryl
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
I just want to thank you so much for taking the time to post about you and your mother's experience in such detail.
My mom is 70 and was just diagnosed in August. She just completed her 3rd round of chemo and is considering an autologous stem cell transplant. Of course the information is overwhelming and we are trying to make an informed decision on whether or not to go through with it. Your account gave me great insight into what I would be experiencing with my mom if we decide to go in this direction.
I am so nervous for all of the side effects from the transplant since she is responding so well to chemo right now. She had lost weight from being sick, and finally has her appetite back and is gaining weight, so it is hard to think of going backwards with this too.
Thanks again for sharing your experience!!
My mom is 70 and was just diagnosed in August. She just completed her 3rd round of chemo and is considering an autologous stem cell transplant. Of course the information is overwhelming and we are trying to make an informed decision on whether or not to go through with it. Your account gave me great insight into what I would be experiencing with my mom if we decide to go in this direction.
I am so nervous for all of the side effects from the transplant since she is responding so well to chemo right now. She had lost weight from being sick, and finally has her appetite back and is gaining weight, so it is hard to think of going backwards with this too.
Thanks again for sharing your experience!!
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
It has been a very long time since I have visited this forum.
I am sad to report the death of my dear sweet mom on April 21st of this year. She had been doing well when she caught pneumonia and could not recover. She visited these forums often finding solace in the information and the shared experiences so generously shared here.
My mom was living her life. She was traveling, joining things, and in the middle of three books. When we returned home after she died, I found a shopping list and her bags nearly packed for her next trip.
I am grateful to this community that provided a place for me to share our own experiences. I know my mom would say the same.
Allison
I am sad to report the death of my dear sweet mom on April 21st of this year. She had been doing well when she caught pneumonia and could not recover. She visited these forums often finding solace in the information and the shared experiences so generously shared here.
My mom was living her life. She was traveling, joining things, and in the middle of three books. When we returned home after she died, I found a shopping list and her bags nearly packed for her next trip.
I am grateful to this community that provided a place for me to share our own experiences. I know my mom would say the same.
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
Hi Alison,
So sorry to hear about your mother's death. It is good to know she had this time after her transplant to enjoy life. My heart goes to you and your family at this time of mourning.
So sorry to hear about your mother's death. It is good to know she had this time after her transplant to enjoy life. My heart goes to you and your family at this time of mourning.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
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