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Hodgkins Lymphoma
Ok I have a story to tell and then I have a few question. My 29 year old daughter discovered that she had severe anemia back in Feb. The doc thought it was due to a 5 year old gastric bypass surgery and an iron defiency. He inserted a port, and started IV iron infusions. After several she had a really bad reaction. They tried again, and once again she has a horrible reaction. Pain in chest, shortness of breath, headache....... While being hospitalized twice for this they did 2 non contrasts catscan of her brain and said all was well. The doc then said she was allergic to iron. Moving on.... She changed doc and found that she had a small ulcer in her pouch and that she had, had a slow bleed due to excessive motrin use. While seeing this new hemotologist/oncologist, she told him about a lymph in her neck that had been swollen for about 5 months. (she has Epstein Barr and her level had been elevated)
He did an MRI with contrast, no other test and told her she Hodgkins Lymphoma. First question, can you determind Hodgkins without any type of biopsy? She has an appointment with him several weeks later, to discuss options for treatments. She then tells him about these headaches that she has been having. He orders and MRI with contrast and an MRI without, he ordered a sonagram of her salvatary gland and thyroid. ( In the middle of all of this she had a severe abscessed tooth which required extracting 2 reg and a widsom.) By the way all of this has been on her left side.
The sonagram comes back negative. The MRI of her brain cames back, white matter changes, toxic metabolic change, and aniomas. All on the left side. Her headache is on the right.
The sonagram of her other glands looked good.
She has to her IV port (on left) on Wed, due to an small tumor of neves forming around it and causing her great pain.
She saw a neurologist and he wants to do an MRI of her spine to see if there is any Lymphoma in her spine then he wants to do a spinal to see what the toxic metabloic changes are.
Her oncologist finally ordered a pet scan due to the neurologist suggesting it. That will be done on Tuesday of this week. I am just searching for answers here.
My next questions are: Do you think this sounds like lymphonma of the brain?
Do you think any of these other issues may be playing a part in any of this?
As asked earlier, can you dignosis Hodgkins without a biospy?
My mind is just boggled by all of this.
Would the earlier CT scans without contast have showed any of this?
Could the port, and teeth be causing any of this?
He did an MRI with contrast, no other test and told her she Hodgkins Lymphoma. First question, can you determind Hodgkins without any type of biopsy? She has an appointment with him several weeks later, to discuss options for treatments. She then tells him about these headaches that she has been having. He orders and MRI with contrast and an MRI without, he ordered a sonagram of her salvatary gland and thyroid. ( In the middle of all of this she had a severe abscessed tooth which required extracting 2 reg and a widsom.) By the way all of this has been on her left side.
The sonagram comes back negative. The MRI of her brain cames back, white matter changes, toxic metabolic change, and aniomas. All on the left side. Her headache is on the right.
The sonagram of her other glands looked good.
She has to her IV port (on left) on Wed, due to an small tumor of neves forming around it and causing her great pain.
She saw a neurologist and he wants to do an MRI of her spine to see if there is any Lymphoma in her spine then he wants to do a spinal to see what the toxic metabloic changes are.
Her oncologist finally ordered a pet scan due to the neurologist suggesting it. That will be done on Tuesday of this week. I am just searching for answers here.
My next questions are: Do you think this sounds like lymphonma of the brain?
Do you think any of these other issues may be playing a part in any of this?
As asked earlier, can you dignosis Hodgkins without a biospy?
My mind is just boggled by all of this.
Would the earlier CT scans without contast have showed any of this?
Could the port, and teeth be causing any of this?
COMMUNITY LEADER
oh and don't forget about the brain crossover: e.g. pain in the right leg would be experienced via the left side of the brain, and vice versa
COMMUNITY LEADER
hi, just some guesses:
"Do you think this sounds like lymphonma of the brain? "
there is the association with EBV leading to Primary CNS Lymphoma, or even EBV leading to Common Variable Immune Deficiency, which might result in PCNSL. But then again, the CVID might possibly result in a brain infection maybe toxoplasmosis. Has her IGG been checked for hypoimmunoglobulinemia? Couldn't the 'toxic metabolic' disorder mean infection?
Then I'd wonder if a PET of the brain can absolutely distinguish between lymphoma or infection, just by the SUV? Maybe that's why the oncologist wasn't eager to do a PET.
"Would the earlier CT scans without contast have showed any of this?"
I'm guessing that what they're seeing with the MRI is some disseminated unusual tissue, not a focal mass (a tumor).
I'd guess what they are mainly seeing as the strongest suggestion of lymphoma is the way that the MRI compares before and after the contrast.
I'd guess they'd want to avoid a brain biopsy unless there is no other choice. The MRI changes after contrast would be the one thing they might accept as proof on lymphoma, though it's not really 100% proof. But if treatment would only be with corticosteriods (not such a dangerous TX as usual chemotherapies), then maybe it's safer to just see if she responds to that, as a further clue.
One thing I'd wonder about the process that caused the tissue around the port: can that also cause the mass in the brain? Hemangioma?
"Do you think this sounds like lymphonma of the brain? "
there is the association with EBV leading to Primary CNS Lymphoma, or even EBV leading to Common Variable Immune Deficiency, which might result in PCNSL. But then again, the CVID might possibly result in a brain infection maybe toxoplasmosis. Has her IGG been checked for hypoimmunoglobulinemia? Couldn't the 'toxic metabolic' disorder mean infection?
Then I'd wonder if a PET of the brain can absolutely distinguish between lymphoma or infection, just by the SUV? Maybe that's why the oncologist wasn't eager to do a PET.
"Would the earlier CT scans without contast have showed any of this?"
I'm guessing that what they're seeing with the MRI is some disseminated unusual tissue, not a focal mass (a tumor).
I'd guess what they are mainly seeing as the strongest suggestion of lymphoma is the way that the MRI compares before and after the contrast.
I'd guess they'd want to avoid a brain biopsy unless there is no other choice. The MRI changes after contrast would be the one thing they might accept as proof on lymphoma, though it's not really 100% proof. But if treatment would only be with corticosteriods (not such a dangerous TX as usual chemotherapies), then maybe it's safer to just see if she responds to that, as a further clue.
One thing I'd wonder about the process that caused the tissue around the port: can that also cause the mass in the brain? Hemangioma?
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