Discussion in 'Teacher Time Out' started by bros, Apr 11, 2015.
May 7, 2015
I'm so sorry to hear this bros. You are in my prayers.
Best wishes. I hope your treatment is successful.
You're definitely in my thoughts!
Bros...prayers for you.
A lot has happened so quickly. Stay strong.
May 8, 2015
We are with you!
Best wishes, bros.
My aunt just offered to drive me and my mom into the city for all future appointments & chemo.
Prayers sent your way bros!
May 9, 2015
Praying for you!
Ask for some nausea meds before chemo if they don't offer you any. It makes a huge difference. Pudding was the easiest thing for my husband to eat after treatment.
Doctor claims I will get zero side effects from Chemo.
We are planning on stocking up on saltines, pudding, jello, and diet ginger ale beforehand - we don't know when chemo starts, but we are thinking as early as my next appoitment
There are lollipops called PreggiePops that have ginger in them. Get something with ginger if they don't give any nausea meds, just in case. It's better to be prepared and not need it.
One of my aunts offered to make me marijuana brownies. I told her I would consider it as I did not wish to be rude.
May 12, 2015
My hip stll hurts. Less than the last few days, but still hurts.
May 15, 2015
Hip pain has mostly subsided, but it is difficult for me to bend over now due to my enlarged spleen - I can now feel it when I bend over.
So some friends of mine online said a way for me to cope with this might be to have a blog. My therapist also suggested a blog might be a good thing for me to do (Although he said it months ago, before the diagnosis was even a thought in anyone's mind).
So I started a blog.
I was honestly surprised that domain name was available.
It can be very therapeutic to journal. A blog is a great idea. There is also a nice networking site called Caring Bridge where family and friends stay connected through challenging health experiences. My friend uses it an I get email updates when he or his wife post updates.
I believe you can get email notifications from the blog if you make an account, if you sign up to the RSS Feed
May 17, 2015
Going to bed soon, then I go to the doctor in NYC tomorrow
May 18, 2015
Good luck, bros.
Went to the oncologist - it is rarer than he thought. Still treatable with oral chemo, he just wants to do a two-drug regimen.
He says it is Chronic NK Cell T-Cell LGL Lymphoma. One of the pathologists he consulted at MD Anderson Cancer Center, in Texas, said that they had only seen about 5 cases of this in 30 years (T-Cell involvement is apparently really rare)
May 19, 2015
Glad to hear it is treatable! Any timeline?
No timeline, they said we'll just see how it goes.
May 21, 2015
Local & NY Oncologist called today - they don't want me to start chemo until next thursday at the earliest - they both want me to get bloodwork at the local oncologist's office the day before I start chemo.
May 22, 2015
Also, they recommended that I look into.. fertility preservation options. I have an appointment on Tuesday.
Were you considering having children before this? Even if you werent, I can understand being prepared.
Never something I considered - never even been on a date or in a relationship.
May 26, 2015
Going to the oncologist tomorrow.
May 27, 2015
Keeping you in my thoughts, bros.
Me, too. Hope things go as smoothly and well as possible. Keep us updated!
Starting chemo tomorrow. Prednisone in the morning, Methotrexate with Lunch or Dinner
May 28, 2015
Good luck. I will tell you I have taken prednisone...I felt off balance & I would get like hot flashes. My cheeks got so hot from it. Just to let you know if you haven't taken it.
Good luck! I hope it feels "good" to finally get started.
I agree. Prednisone can also cause bloating and weight gain, sort of a general "puffiness" that is extremely unpleasant. It's a serious drug with serious side effects, but it can also do a lot of good when it's needed.
I've taken lower doses of it in the past with no side effects, but this is the highest dose so yeah
Yeah, they said I might get 10 lbs of water weight
They gave it to me after I got stung. I have what they say is local allergic reaction. Now I have to keep it on hand.
Prednisone has a horrible aftertaste.
Luckily, methotrexate has none.
Wish it was the reverse
I hope all goes well. I am routinely on high doses of prednisone and it can make it very hard to sleep. I get a ton of energy from it. But yes, you can get a moon face if you are on it for a long time. I loved it though, made me feel I could run a marathon!
How long will the oral chemo go for?
Unknown - only one study on this treatment regimen. I think I read it a few weeks ago it consisted of like 12 50-70 year olds.
So, possible side effect:
Had mild nausea about an hour ago for 30-40 minutes.
Another possible side efect:
Pain in the right leg (I checked, it isn't near a vein, it is in muscle). I think I sat wrong before on a hard chair earlier, though.
May 30, 2015
WEnt to the ER tonight - my irregular heartbeat (that I have had since 2007) increased dramatically today, oncologist wanted it checked out by a cardiologist - staying on the treatment regimen. Got prescribed Zofran & and antacid due to nausea.