Thank you, Lucy. I am glad to hear things are going well with your husband. There is so little information about Transformed Lymphoma. Best, Susan
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Susan again. To let you know my follicular lymphoma transformed sometime in the beginning of 2020 to high grade DLCBCL lymphoma with a single C-Myc translocation. I had no symptoms. This was only found via enlarging nodes am slightly elevated LdH. The scans and biopsy then showed spread and aggressive diffuse large B cell. I completed 6 rounds of R-CHOP and 2 of maintenance rituximab but my end PET-CT showed just one remaining metabolically active axillary node.
That node is now being studied via core needle biopsy. I had been pleased that almost all of the cancer had been eliminated by the chemo but apparently it is a pass/fail system, and even a small amount of residual cancer indicates refractory/ relapsed disease and treatment failure. Further, I feel well physically. My blood values, which were never far out of range, are normal and I continue to not have B symptoms. This is a most devastating result as the chemo had seemed to be working well. elEmotionally, it is almost unbearable, as a few only toxic and uncertain treatments seem possible. Stem cell transplant has a very low success rate in Transformed Lymphoma. Car T Cell is possibly available as 2nd lone treatment in a trials setting. I hear back from the doctors on Thursday. I wonder if anyone else has had this experience?
I put “Transformed Lymphoma” in the search engine and found no results. Question for the moderators if there is another heading on the boards for this?
Terrified and devastated. Susan
Thank you. Agreed.
I am still on watch and wait. A question I had for the group is why do you all seem to have annual CT scans? My doctor is fully opposed to this, saying it subjects the body to unnecessary radiation. The basic protocol I am living with is that in the absence of symptoms or difficult or stigmatizing tumors, that we do nothing except periodic check ups and blood work. I’d be interested in hearing the reasoning behind the annual cat scans.
I am so tired of people posting about God in a way which is proselytizing. Look it up. This is a private matter for most people and unhelpful and even destructive to those who for reasons of their own cannot follow your very private regimen of healing. This is a medical site. The tone of superiority with your claim to special ownership of GOD is really not kind or helpful. You could say that spiritual support helps you and leave it at that. This is not a recruitment center.
The dentist (or a more skilled one) should be able to make you a special anti-grinding retainer to wear at night. They make them now if lightweight clear plastic. But it must be properly done, or you will grind more. It will discourage grinding and protect your teeth.