Discussion in 'Teacher Time Out' started by bros, Apr 11, 2015.
Apr 19, 2015
Bros, positive thoughts your way. Hang in there.
Apr 20, 2015
feeling a bit better today
hip still hurts - changed hip bandage, had some leakage, not too much, though.
Any word on all the tests?
nothing on bone marrow.
also I have a temp of 100.7
If it hits 101, I have to go back to the hospital.
I really don't want to have to do that.
I hope you feel better soon, bros.
Apr 21, 2015
Wow, you can't catch a break. Is this reaction normal after the test or did you just have a bad reaction? Hope you are back on your feet soon!
My temp is back down to around 97.3. Yay.
It is not related to the bone marrow biopsy. They believe I am immuno-suppressed because the neutrophils are so low - maybe because the NK cell/lymphocyte counts are so high
Hematologist/Onccologist just called my mom on her cell phone - he reviewed blood slides from the hospital and my blood is completely different than it was even two days before going to the ER.
So now instead of a disorder that can lead to leukemia, he is thinking I have a type of Lymphoma that is currently untyped/not much is known about/is very rare. He is thinking i'll have to see the leading expert in Lymphoma's - he's at Memorial Sloan Kettering in NY.
So at least this guy is closer
I know someone who's son just had a bone marrow transplant. It went well. He was at Sloan Kettering and they were great.
Sloan Kettering is a great hospital, bros. Just curious. You are an adult. Why didn't the doctor call YOU?
My thought exactly--I can barely make a doctor's appointment for my 21 year old son.
I think he read the wrong number on my patient info sheet - he has both of my parent's cell phones, my phone, and the house phone, and he has permission to talk about everything with my parents. Going to ask him tomorrow to call the home phone first in the future.
And my mom can actually write notes when someone calls - I can't really, on my tablet lying on the couch
Apr 22, 2015
back from the doctor.
I am a diagnostic question mark, apparently.
Those LGLs? Gone. Might've just changed size, though.
Now instead of NK Cells, there's a lot of T Cells, but they don't look exactly like T Cells.
At this point, he is thinking one of these:
1. Lyphoma - Not a typical kind. My marrow shows signs of Hodgkins Lymphoma, Non-hogdkins lymphoma, and some unknown type of lymphoma
2. Some Lymphoproliferative disorder
3. NK Cell LGL DIsorder that can develop into NK Cell LGL Leukemia.
He's sending my blood off for chromosomal and genetic testing, results should take a week or two. I see him next week.
Thanks for the update. I'm so sorry you have to go through this. A diagnosis isn't always pleasant, but not knowing is even harder.
How do you feel? Hope you don't feel too weak or sick. Take care..
Apr 23, 2015
I feel fine - hip is still a bit achy. If I felt sick, things would be moving much, much quicker.
Also my doctor said today I can go out again, but avoid places where there might be sick people, such as schools. If I go out to eat, wipe down the utensils first with cleaning wipes
Bros, all the best for you. Keep us updated.
Maybe you will end up teaching online classes to stay clear of germs!
Apr 25, 2015
Hip is still slightly achy, but at least I can walk around without wanting to scream in pain like last week.
Apr 26, 2015
Hip is still a bit achy, but went out to dinner last night, so I was sitting up for a while. Probably not the best idea, but the food was tasty.
So when you went out, did you avoid the above? I know germ phobes who are a bit over vigilant in wiping things down, no lemons in drinks kind of people.....considering your history here doesn't document many evenings out for dinner was this the best choice?
Apr 27, 2015
I go out for dinner every few months.
We got to the restaurant right when they opened - so not many people - and we wiped down the already immaculate looking utensils. (It was a very... fancy restaurant participating in Jersey Shore Restaurant Week)
We also chceked with my hematologist/oncologist on wednesday asking him specifically about going out to eat at a restaurant and he was fine with it. He said it is much more likely that a bacteria inside my body infects me than something from an external source, unless I am near someone who is sick.
I didn't go to the wake/service for my uncle's father (he's married to my aunt down in Cherry Hill) which was on Saturday - they all understood. But I know I cannot use this as a excuse to withdraw completely. I am going to see my therapist this week, bt we have told him if he feels ill or his infant feels ill, call us, then we can do a phone session.
Apr 28, 2015
Seeing the neurologist and the oncologist tomorrow
Let us know how it goes.
Apr 29, 2015
Hematologist/oncologist just called - he just got the slides from my bone marrow biopsy today and since I am not feeling any different, he would rather go to the hospital and review my slides and see me either later this week or next week - he should call tomorrow with results.
His office just called. He wants to see me tomorrow.
Neurologist appointment was quick. He took me off the Depakote effective immediately and now I am trying out Vimpat.
Apr 30, 2015
back from the oncologist - he is thinking it is a T-Cell LGL Lymphoproliferative disorder (which can include lymphomas & leukemias) - he wants me to see a guy in NYC next week
May 1, 2015
Went to my GP. He also finds this incredibly interesting and wants to be kept in the loop. He says another possibility for treatment could be stem cells.
May 3, 2015
Wow, bros. Hope you are feeling better.
Still trying to schedule an appointment at Columbia University Medical Center.
May 4, 2015
Got an appointment to see the specialist - heading to NYC on wednesday
Glad to hear. Hope you get more answers.
May 6, 2015
surprise bone marrow biopsies with only lidocaine to numb the pain sucks. saw the expert today.
May 7, 2015
Hopefully you are able to get some answers soon, bros.
he's thinking it is NK Cell Lymphoma or Leukemia, but he needs to check my blood to see exactly what type it is - as that determines course of treatment
There will be no watching and waiting - he wants to start chemotherapy as soon as possible, oral chemotherapy.
I'm sorry to hear this diagnosis. I'm glad that your doctor is being proactive. I hope that things work out well for you.
Caesar said what I was thinking.
Prayers for you, bros.
Prayers, bros. Hope that a quick start to treatment brings positive results.