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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 26 6:11pm | Replies (946)Comment receiving replies
@loribmt
I would just like to tell you the Doctors are uncertain about the next treatment at this stage . They said the second transplant usually have more risk and lower chances just about 12-15% .
They cant go with DLI (infusion of cells from his donor)(my son) . Cell therapy started don't know what's next . They might start chemo which is pills and injection every week so that he can go home and enjoy some quality time but again they are not sure till when it worked out . And once it stopped they don't have any other treatment after that .....
I cant explain my feeling how much we are in pain right now.
There is no way out ...
We are just exhausted now ,not seeing any clear path to choose .
please suggest and help me something about other clinical trail or else
I will be highly grateful to you .
Thanks
Replies to "@loribmt I would just like to tell you the Doctors are uncertain about the next treatment..."
@anitasharma I am sorry to hear this outcome. Praying for your husband, you, and your family. I just heard yesterday that my cancer is coming back after BMT. I find out Oct 15 whether the DLI is available to me.
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@anitasharma
I’m just heartbroken for your family with this latest update. I know it feels hopeless right now but it’s not time to throw in the towel.
While your husband is already with the University hospital in Alberta, I would still suggest a 2nd opinion. I’m not sure if video appts are offered if not living within the US, but it might be worth trying. If not, there may be some travel to the US involved. But it may be worth a visit to a clinic with a very deep bench of specialists.
The closest to you would be the Fred Hutchinson Cancer Center in Seattle, Washington. The Hutch center was at the forefront of stem cell transplantation and is a highly rated cancer center.
https://www.fredhutch.org/en.html
~This is the link to their appointment request page:
https://www.fredhutch.org/en/patient-care/request-appointment.html
~~~~~~~~~~~~~~
Mayo Clinic in Rochester Minnesota is where I am a patient. Their BMT and hematology departments are outstanding and very responsive.
http://mayocl.in/1mtmR63
I did find a few clinical trials listed for Rochester regarding treatments for ALL. Not sure they’re relevant but here’s the list.
https://www.mayo.edu/research/clinical-trials/search-results?
Clinical trials listed on the Cancer.gov site, for ALL (acute lymphoblastic leukemia)
Some of these include relapsing ALL
https://www.cancer.gov/research/participate/clinical-trials/disease/acute-lymphoblastic-leukemia-all/treatment
This is a disappointing setback for sure, but hope is not lost. Please check to see if a 2nd opinion is possible. I know my local oncology team was excellent but they also worked closely with the doctors at Mayo. Larger centers of excellence often have access to resources and information that might not be on the radar of smaller clinics.
Holding you close in my thoughts and hoping for days filled with strength and healing.