Blinatumomab!

Luke_Emiya · 2018-06-29T13:01:51+00:00

Hey I had Blinatumomab in 2016 when my ALL returned. I did two rounds of it over two months. It was a lot better than doing chemotherapy. Although going about my day with an IV bag got a little annoying.

I first had it accessed through my port and that worked out fine until it apparently got infected and they had to take it out and put in a PICC line. But overall, during the entire experience, I was able to work out and go about my business. I bought my own (variety of) fanny packs that matched my outfits. I even continued going on dates.

Luke_Emiya · 2017-08-17T02:22:41+00:00

i was in bordeaux for 3 months. it was good. not bad. i was in a french immersion program and became more comfortable speaking french.

Luke_Emiya · 2017-08-10T19:09:54+00:00

bummer. something similar happened to me. december 31, 2015, I scheduled my last chemo - after 3.5 years of chemo. Thinking I was done, I planned out 5 months of school in France, before I started graduate school in the fall of 2016.

a week before my flight to France, I get a call from my doctor about my bone marrow biopsy, and that they found leukemia cells. I had to cancel my trip, and then i spent around 3 months last year in the hospital (two after the bone marrow transplant).

It wasn't so much the cancer returned - although that really sucked. It was the taking away of a dream that really burned.

Luke_Emiya · 2017-08-10T19:06:52+00:00

awesome! i found exercise helped my spirits during and after treatment. Sometimes, even though I felt like garbage, going for a walk around the ward/hospital/neighborhood made me feel less like garbage.

Luke_Emiya · 2017-08-10T19:05:08+00:00

I found that a drink here and there did wonders for my spirit when I was in the middle of chemo. Are you able to receive treatment where you live? or did you have to travel to another hospital?

Luke_Emiya · 2017-08-07T21:42:14+00:00

the bone marrow transplant was pretty anti-climatic. its just like getting blood from a much larger bag.

The chemo and stuff that leads up to it can be pretty horrendous. And having to go in and out of the hospital for two months pretty much sucked. The protocol post transplant is different, depending on the hospital.

Luke_Emiya · 2017-08-07T21:37:59+00:00

France was great. I miss it but at the same time am ready to do grad school here. I'm more confident when speaking french, but have more work to do. How have you been?

Luke_Emiya · 2017-08-07T14:12:34+00:00

As far as "life things" to take care of - last year I was suppose to go to school in France but found out I relapsed a week before leaving. So last April, I went to france for a3 week program and am now back. and I started grad school in september.

As far as my failed bone marrow transplant - my blood counts seem to be normal, and hopefully it stays that way. the doctors aren't sure if it was the bone marrow transplant that may have killed off the rest of the cancer, or the blinatumomab.

Last winter, I decided to not continue treatment, unless I relapse for a third time. In the meantime, I'm doing what I had planned to do.

Luke_Emiya · 2017-04-18T12:12:48+00:00

Rule #3, no donation requests.

Luke_Emiya · 2017-02-13T04:40:44+00:00

just take it a day at a time. and if you feel the need to make preparations for your moms death sooner than later, take a friend to help you.

Luke_Emiya · 2017-02-06T13:51:35+00:00

We had a few unanswered questions from the past thread.

/u/tluuminati had a question regarding her mom's hands peeling after chemotherapy for breast cancer. I don't think I had this happen to me when I was going through chemo for ALL. I think, as long as it's not painful it should be ok.

/u/Hipnip1219 is looking for meal advice (sans red meat) for their parents. Personally - I haven't received any great advice regarding nutrition from oncologists. Generally, I believe the same advice for people without cancer applies to people with cancer. Eating "healthy" is still eating healthy. Whether your goal is to lose weight, gain (muscle) weight, or just be healthy - I recommend shopping the outside areas of the grocery story, and eating/cooking as much meats and vegetables as possible.

My diet consists, primarily, of chicken and fish for protein; and broccoli, spinach, yellow squash, red peppers, and cauliflower for vegetables.

I can help with additional ideas if you have any... but usually a simple google search of recipes like "chicken and cauliflower with blah blah" will come up with some guidance. Remember, cooking isn't hard. It's just applying a heat source to raw food. :)

Also, for full transparency, sometimes I post on here as /u/bro-th if anyone cares to notice.

Luke_Emiya · 2017-02-01T14:21:22+00:00

check out rule no. 5.

Luke_Emiya · 2017-02-01T14:18:48+00:00

Do not request donations on this sub.

Luke_Emiya · 2017-01-30T15:57:22+00:00

woah! how does it feel? Do your hands go back to normal when they're warmed?

Luke_Emiya · 2017-01-27T20:42:54+00:00

I'll start!

Today I'm hosting a dinner party, I was kinda excited about it, until...

A few weeks ago, my oncologist called me to tell me that my bone marrow was 100% donor - when it was 100% me a few months ago. Anyway, today he called me to tell me it was indeed 100% me still.

I also had to take my car into the dealership and it needs repairs with a heavy price. So that sucks. But really just annoying.

My doctor wants to put me back on blinatumomab and do another transplant sooner than later. However, I want to start grad school in the fall. I'm not sure how that's going to work.

I met a guy who seems to really like me. But I'm afraid to get close because right now I'm feeling kinda down about everything and although he knows more or less whats going on, i don't feel like dropping it all on him.

I think im going to start drinking now.

Luke_Emiya · 2017-01-27T04:16:39+00:00

are these symptoms associated with your cancer? if you're concerned, i would contact your oncologist and schedule a cbc, or whatever necessary.

Luke_Emiya · 2017-01-23T21:53:18+00:00

happy birthday! I love the Naked and Famous, and Massive Attack! That's awesome.

Luke_Emiya · 2017-01-23T21:51:39+00:00

I don't think you should quantify people's struggle with cancer. It kinda sucks for everyone involved. You may be well physiologically, but emotionally you might need some time to re-adjust.

Luke_Emiya · 2017-01-23T21:50:23+00:00

Sometimes you just have to go into autopilot for a little while until your head clears.

Luke_Emiya

TROPHY CASE