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car12
@carlos12

Posts: 8
Joined: Jun 22, 2017

Did anyone go through a stem cell transplant? Lymphoma

Posted by @carlos12, Jun 23, 2017

What are the risks of it? My oncologist doctor advised me to have a stem cell transplant to make sure the Lymphoma do not come back. I am refusing doing it since the risks are very high. My wife and my daughter think that refusing to it is not the right decision.

REPLY

Hi @carlos12,
I moved your message to the cancer group where you’ll be able to connect with others who also have lymphoma. You may also be interested in watching this webinar:
– Bone Marrow Failure and Bone Marrow Transplantation http://mayocl.in/2szGZd6

What type of lymphoma do you have? I will connect you with others.

Hello @carlos12,

I understand that stem cell transplant has some risks and can be a scary procedure to face. However, the risks vary greatly depending on the type of bone marrow transplant that is needed.

An autologous transplant uses your own cells which are collected from the bloodstream and stored for your transplant. An allogeneic transplant uses cells from a family member, unrelated donor or umbilical cord blood unit. Here is a great resource on all things Bone Marrow Transplant that many Mayo Clinic Hematology staff members often share with their patients, https://bethematch.org/transplant-basics/how-transplants-work/.

@carlos12, what you mind sharing what type of lymphoma you have? Have you had a bone marrow transplant already as a part of your treatment? What specific parts of treatment have you worried and have you discussed these worries with your medical provider?

@JustinMcClanahan

Hello @carlos12,

I understand that stem cell transplant has some risks and can be a scary procedure to face. However, the risks vary greatly depending on the type of bone marrow transplant that is needed.

An autologous transplant uses your own cells which are collected from the bloodstream and stored for your transplant. An allogeneic transplant uses cells from a family member, unrelated donor or umbilical cord blood unit. Here is a great resource on all things Bone Marrow Transplant that many Mayo Clinic Hematology staff members often share with their patients, https://bethematch.org/transplant-basics/how-transplants-work/.

@carlos12, what you mind sharing what type of lymphoma you have? Have you had a bone marrow transplant already as a part of your treatment? What specific parts of treatment have you worried and have you discussed these worries with your medical provider?

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Thank you Justin for the feedback. The Lymphoma I had was the Non-Hodgkin T-Cell and I was told that the I am eligible for the autologous transplant. I never had any transplant. My worries are on the recovery process after the discharge from the hospital , I will be prone to get seriously sick to death even from a regular cold since my immune system will be extremely low. I have talked to my doctor who does not understand my concern since he is used to deal with many patients under these circumstances.

I have two conditions: POEMS syndrome and nonHodgkins Lymphoma. I endured the the stem cell transplant for POEMS. As for Lymphoma the doctors believe they stifled the Lymphoma. I will know more about the Lymphoma when I get another CT scan in about 90 days. As for the transplant procedure, they will put you through a battery of tests before they even consider doing it. It is risky but I don’t think any other medical entity is as cautious as Mayo. This is my opinion only but if a Mayo doctor says you need a transplant, you need a transplant.

Welcome to Connect, @craigkopcho,

I’m sure @carlos12 will very much appreciate hearing from someone with a similar experience.

This past discussion on Mayo Clinic Connect might be of interest to you:
Stem Cell Transplant (autologous) http://mayocl.in/2t72jqV
I’d like to invite @kjs1015 @las @merlynsdad @mettemaj @aamarion to return and join us here, as I’m certain they will have valuable insights to share.

We also have several members posting about non-Hodgkin’s lymphoma in this discussion:
– Non Hodgkin’s lymphoma http://mayocl.in/2sBXOBc

@craigkopcho, you mention that, “As for Lymphoma, the doctors believe they stifled the Lymphoma;” would you share a few more details?

My issue began with tremors for which I sought the services of a local neurologist. I was prescribed Primidone and sent in for blood work. The blood-test had the signature of Lymphoma. I was told to see a hematologist quickly. A subsequent PET scan showed evidence of cancer. Later a needle biopsy confirmed small cell Lymphoma. Subsequent CT scans and blood work were utilized to monitor Lymphoma. At that time I had swelling going on in both legs and feet. The doctor could not tell me if the edema was related to Lymphoma, To make a long story short, my oncologist retired and I set about to find another doctor. Upon finding the new doctor, we had the traditional get to know each other conversation. The new doctor, who was seeing me for Lymphoma, stooped me in the middle of the conversation and said “I think you have POEMS syndrome”. The indicators of POEMS were positive and I was prescribed Revlimid (oral Chemotherapy) In the midst of the oral chemo, that doctor moved his practice and referred me to Mayo. To put POEMS in check, I underwent an autologous stem cell transplant. I was told that the transplant could take out the Lymphoma. I haven’t had a scan post transplant. The lymphoma was not my primary issue. POEMS was the reason for the transplant. When I go back, in another 90 days, I was told that I would get another CT scan to see if the stem cell transplant had an effect on the Lymphoma. POEMS and lymphoma are two different things but I think of the transplant as killing two birds with one stone.

Thank you for your post, It’s good to know that both of your diseases might be controlled by now.
How long was your recovery for after the transplant? Were you able to do all the things you used to do before? How did you feel while you were at home during recovery? And when were you able to do everything normally with any help from your caregiver?

Carlos,

I will sit down tomorrow July 3rd and post a description of my experience regarding the stem cell transplant lymphoma and all the Wonders enjoys it go with that.

I would like to just let you know now that I have been clear of any cancer and just had my 5-year scan and the results were great.

Keep your chin up and look forward to my response tomorrow.

Kevin

@craigkopcho

My issue began with tremors for which I sought the services of a local neurologist. I was prescribed Primidone and sent in for blood work. The blood-test had the signature of Lymphoma. I was told to see a hematologist quickly. A subsequent PET scan showed evidence of cancer. Later a needle biopsy confirmed small cell Lymphoma. Subsequent CT scans and blood work were utilized to monitor Lymphoma. At that time I had swelling going on in both legs and feet. The doctor could not tell me if the edema was related to Lymphoma, To make a long story short, my oncologist retired and I set about to find another doctor. Upon finding the new doctor, we had the traditional get to know each other conversation. The new doctor, who was seeing me for Lymphoma, stooped me in the middle of the conversation and said “I think you have POEMS syndrome”. The indicators of POEMS were positive and I was prescribed Revlimid (oral Chemotherapy) In the midst of the oral chemo, that doctor moved his practice and referred me to Mayo. To put POEMS in check, I underwent an autologous stem cell transplant. I was told that the transplant could take out the Lymphoma. I haven’t had a scan post transplant. The lymphoma was not my primary issue. POEMS was the reason for the transplant. When I go back, in another 90 days, I was told that I would get another CT scan to see if the stem cell transplant had an effect on the Lymphoma. POEMS and lymphoma are two different things but I think of the transplant as killing two birds with one stone.

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@craigkopcho, I would like to add my welcome to welcome to Kanaaz’s. Thank you for sharing your experience with POEMS and a transplant. You may find the following post from the Hematology Mayo Clinic Connect Page an interesting read:
POEMS: An expertise in the rare leads to a rare opportunity, http://mayocl.in/2tijRi7.

@craigkopcho, it is not often you hear that lymphoma is not the primary issue. If you don’t mind sharing, would you share with us how your symptoms of POEMS are doing post stem cell transplant? How are you feeling?

@craigkopcho

My issue began with tremors for which I sought the services of a local neurologist. I was prescribed Primidone and sent in for blood work. The blood-test had the signature of Lymphoma. I was told to see a hematologist quickly. A subsequent PET scan showed evidence of cancer. Later a needle biopsy confirmed small cell Lymphoma. Subsequent CT scans and blood work were utilized to monitor Lymphoma. At that time I had swelling going on in both legs and feet. The doctor could not tell me if the edema was related to Lymphoma, To make a long story short, my oncologist retired and I set about to find another doctor. Upon finding the new doctor, we had the traditional get to know each other conversation. The new doctor, who was seeing me for Lymphoma, stooped me in the middle of the conversation and said “I think you have POEMS syndrome”. The indicators of POEMS were positive and I was prescribed Revlimid (oral Chemotherapy) In the midst of the oral chemo, that doctor moved his practice and referred me to Mayo. To put POEMS in check, I underwent an autologous stem cell transplant. I was told that the transplant could take out the Lymphoma. I haven’t had a scan post transplant. The lymphoma was not my primary issue. POEMS was the reason for the transplant. When I go back, in another 90 days, I was told that I would get another CT scan to see if the stem cell transplant had an effect on the Lymphoma. POEMS and lymphoma are two different things but I think of the transplant as killing two birds with one stone.

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I am feeling better. I am still able to work but I am a bit slower than I use to be. As for my Lymphoma it isn't causing any serious problem now. I don't have cold chills or night sweats. POEMS is my primary issue. My feet at one time look like balloons due to POEMS. I have issues with bone ache, muscle ache and Neuropathy. No one can say if the Neuropathy is caused by the disease or the Chemotherapy used to treat POEMS. Dr. Sher in Jacksonville is overseeing my case. I know of no one else that has both disorders: POEMS and non-Hodgkin's Lymphoma

@kjs1015

Carlos,

I will sit down tomorrow July 3rd and post a description of my experience regarding the stem cell transplant lymphoma and all the Wonders enjoys it go with that.

I would like to just let you know now that I have been clear of any cancer and just had my 5-year scan and the results were great.

Keep your chin up and look forward to my response tomorrow.

Kevin

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@kjs1015, you mentioned that you were going to share your experience regarding your stem cell transplant for lymphoma with @carlos12. It sounds like your transplant was successful in assisting your being clear of cancer for 5 years. If you don’t mind, would you care to share your experience?

My Son (36 yr) is going through the Stem cell transplant for CLL treatment currently at MD Anderson Cancer Hospital in Houston, Tx. He is on Day + 10 since his stem cell transplant. His sister was his donor. The donor cells have begun to graft on my sons cell yet. Doctors expect then to begin now. His white blood count is 0.00. He has had high fever (103.2 F) for a few days, now a hacking cough for past 4 days ( no pneumonia yet) and just brutal tiredness. The doctors say all of these symptoms are common in SCT patients. His total hospital stay began July 17. 6 days of chemo, 2 day rest, receive donor cells, another final dose of chemo, and now the waiting game for grafting to happen. My question is can someone who has been thru this process provide me with encouragement and help me understand the process forward until going home.

Hello, @bobby2014, and welcome to Mayo Clinic Connect. So glad to hear your son was able to get a stem cell transplant. Sounds like it’s been a journey. I am certain we have other members who have undergone stem cell transplant (from a donor or autologous) or who have had a loved one go through transplant for lymphoma or other conditions who would be happy to share with you. I’d like to introduce you to @craigkopcho @bradybob @las @kjs1015 @helpful @bellaconnie @djzlady96 and @littlepixie.

I’m also tagging fellow members @reflections @azjulie and @irishk who may be able to offer some insight into stem cell transplant from a caregivers perspective.

You may also be interested in participating in this thread in the Caregivers group on Mayo Clinic Connect: https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=1.

I’m so glad you found our group here. We look forward to getting to know you a bit better. If you don’t mind, can you tell us a bit more about what you might like to know about the process from here till your son goes home?

@lisalucier

Hello, @bobby2014, and welcome to Mayo Clinic Connect. So glad to hear your son was able to get a stem cell transplant. Sounds like it’s been a journey. I am certain we have other members who have undergone stem cell transplant (from a donor or autologous) or who have had a loved one go through transplant for lymphoma or other conditions who would be happy to share with you. I’d like to introduce you to @craigkopcho @bradybob @las @kjs1015 @helpful @bellaconnie @djzlady96 and @littlepixie.

I’m also tagging fellow members @reflections @azjulie and @irishk who may be able to offer some insight into stem cell transplant from a caregivers perspective.

You may also be interested in participating in this thread in the Caregivers group on Mayo Clinic Connect: https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=1.

I’m so glad you found our group here. We look forward to getting to know you a bit better. If you don’t mind, can you tell us a bit more about what you might like to know about the process from here till your son goes home?

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thank you

@lisalucier

Hello, @bobby2014, and welcome to Mayo Clinic Connect. So glad to hear your son was able to get a stem cell transplant. Sounds like it’s been a journey. I am certain we have other members who have undergone stem cell transplant (from a donor or autologous) or who have had a loved one go through transplant for lymphoma or other conditions who would be happy to share with you. I’d like to introduce you to @craigkopcho @bradybob @las @kjs1015 @helpful @bellaconnie @djzlady96 and @littlepixie.

I’m also tagging fellow members @reflections @azjulie and @irishk who may be able to offer some insight into stem cell transplant from a caregivers perspective.

You may also be interested in participating in this thread in the Caregivers group on Mayo Clinic Connect: https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=1.

I’m so glad you found our group here. We look forward to getting to know you a bit better. If you don’t mind, can you tell us a bit more about what you might like to know about the process from here till your son goes home?

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Was hoping to connect with people or care givers who have had stem cell transplant for CLL in Houston?

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