Discussion in 'Teacher Time Out' started by bros, Apr 11, 2015.
Apr 24, 2016
Jul 28, 2016
So in the last few months, we lowered my dose of chemo pills in May and since then, my numbers have gone up a bit - my hemoglobin seems to have settled around 12.0 (1.1 below normal) and my neutrophils are hovering around 600-800 (Above 500 is what the guy down at UVA is comfortable with - 1800-4000 is normal)
I no longer need to nap a few hours after getting up on Friday, but I still feel horrible - one hit of the medical marijuana and my nausea is gone in 15 minutes.
I am seeing the local oncologist every 3 weeks and the NYC oncologist every 3 months.
I went to the ophthalmologist this month and told him about my diagnosis, he told me to not skip a year again and see him every year, so he can make sure the cancer doesn't affect my eyes - the chemo pill doesn't effect the eyes, but leukemia & lymphoma can.
Went to the neurologist, he's happy I haven't had a seizure in a while.
Went to the cardiac electrophysiologist - he wants to see me every 6 months, but as long as I don't feel the PVCs (premature ventricular contractions) and my heart looks good on the echocardiograms (he wants me to get one every two years) he just wants to monitor it and avoid treatment until it is necessary.
Next month I go to my cousin's wedding, so that should be fun. It's a 3 hour drive (2 hours north of NYC)
Thanks for the update, bros. Happy to hear you have stabilized. Enjoy that wedding.
Jul 30, 2016
Glad you can control the nausea. With everything else it is so important to be able to eat enough and enjoy food.
It is good to hear from you, bros, and even better to hear that your health seems to be on the upswing. I hope the wedding is fun, not a chore. Keep us posted.
Nov 21, 2016
So, an update.
My cousin's wedding in August was great. I was tired for a few days after the wedding, though. Tired myself out - had to wake up at 8 AM the day of the wedding, got in the car at 10, arrived at the house we rented on AirBnB at 1 (after my grandma, myself, and my brother were stuffed into the back of a car, we were all sitting on top of each other), got to the wedding at 4, and left a little after midnight (maybe 12:30), we got back to the home at like 12:45, watched TV for a bit, fell asleep around 2 AM, woke up at 9 AM, went to the day-after-the-wedding brunch at 11 AM, and, yeah - that weekend in August was tiring.
As of the beginning of November, my hemoglobin is normal (Normal is 13.1-17.1, I am at 13.8)!
My neutrophils are still low - hovering around 600-900 (Normal is 1800-4000). I see my local oncologist every 3-4 weeks and my NYC oncologist only wants to see me every 6 months. If I am sick - rules are the same - call the oncologist and see what they say. If I have a temp above 100.4, I call on the way to the ER. So, let's hope I don't get a fever any time soon. I am still having the "usual" side effects of the medicine, plus or minus some vomiting on Thursday & Friday, which I am okay with, I suppose. I take two hits of the medical marijuana now - sometimes two times on Friday, to help curtail some nighttime nausea.
Thanksgiving is this week - going to be having it on Saturday, instead of Thursday, due to the medication. My uncle who lives like 5 minutes away might come for the tasty food, we'll see.
Nice to hear from you with mostly positive news. Keep on going strong!
Jan 2, 2017
Numbers are still stable.
However, on December 29th, I had a temperature of 100.4. I didn't have to rush to the ER - I had to rush to my local oncologist! Thankfully, my uncle was home because he took off between Christmas & New Years - so he was able to drive my mom and I to the oncologist. He checked me out, they were only able to draw enough blood for a basic test (CBC), no bacteria cultures. He was shocked at my numbers - my Hemoglobin was still normal, but my neutrophils (900 eight days before) shot up to 4100 (Normal is 1800-8000). My local oncologist was not expecting my immune system to respond so well to an infection. However while my neutrophils spiked to respond to the infection, my platelets dropped to 108 (from 205 eight days before) - I am guessing they tanked in order for the bone marrow to be able to produce neutrophils.
So, I got sent home with antibiotics (just to make sure) and a combination of medications delivered via nebulizer & inhaler. Of those last two, I am only on the inhaler stuff, but with a valved spacer - makes it easier for me to take. Last day of the antibiotics is tomorrow, I still feel cruddy, but I should be better by the middle of the week.
Oh, and one positive: I got to skip my chemo pills on Thursday for the first time. Crappy reason to be able to skip it, but I got a medication vacation
Good sense of humor about it! I hope the antibiotics do their job well and rid you of the infection. Thanks for the update. Good luck in 2017!
Feb 17, 2017
So my mom's insurance is changing - found out in January that it would be changing February 1st. Then my mom was told it would change February 1st... then March 1st. Today, she found out it will be changing April 1st (The town couldn't sign the contract before the 15th).
So, I have to switch my oncologist in NYC from Columbia to Memorial Sloan Kettering.
I have my first appointment at MSKCC in the morning - the doctor was recommended by the guy at UVA.
Had to skip my pills this week so I could go to this appointment.
Apr 25, 2017
So, some updates.
Went to MSKCC. They are great - got there at 10:15 for an 11 AM appointment, spent about an hour with the doctor, his fellow, a nurse, a clinical trial specialist, or a pharmacist. Left the office at noon.
My insurance company must love them, though - they ended up billing my insurance company around $16,000 (they got paid around $8500 after provider discounts) - I only had to pay $10.
March 25th, got a letter in the mail from new insurance with the forms to get my disability coverage under the new plan.
Spent all day March 27th contacting doctors, getting the form to everyone. Call insurance to get their fax number after I have the completed form and they say "Oh, the employer decided not to go with us. They told us on Friday. Didn't they tell you?"
My local oncologist likes my numbers, my immune system seems stuck between 800-1100, which we am happy with. I see him once a month to keep an eye on things. Last visit, got 7 tubes of blood drawn for the registry for my cancer - then they FedEx'd it down to UVA, they received it 14-15 hours after it was drawn.
I see the local onc middle of May, then I go back to MSKCC June 9th (get to skip my medication the day before, yay!). From there, he'll decide when he wants to see me next.
Sounds good, bros. What is the prognosis, bros? What are you doing between dr appointments? If you are up to it and healthy enough, it is good to get out and around... Are you healthy enough to seek employment? Can you get out and meet friends, enjoy some social activities?
Wishing you well...
Apr 26, 2017
Prognosis is the same - unknown impact on life expectancy but not believed to be significant. 89% of people make it to 10 years after diagnosis (and they see no reason why I won't make it well beyond that, I don't have any autoimmune disorders, which can complicate things for some people with LGLL).
Not doing much of anything between appointments.
Immune system isn't really strong enough to be in a school - it is hovering on the border of mild and moderate neutropenia (decreased amount of the white blood cells that are the body's first response to an infection).
Don't know where I could meet friends or what kind of social activities there are for unemployed 26 year olds.
Bros, I live in the same state as you but a different area. In my town, one could find:
Free movie nights at the library
Weekly bands in the park in the summer
Nature trails, hiking areas
Adult education offerings...various fun stuff to appeal to a variety of interests
Bowling leagues, town recreational softball, etc...
I'm sure you could find similar activities near you if you wanted to get out.
That's so sad, bros. I hope you find something fulfilling to do.
Apr 27, 2017
Looking at stuff at my library, they do movies during the day, but it is on days when the pills make me feel bad.
I don't really care for the kind of books they do at book clubs.
My town does random kids movies in the park in the summer.
Hiking isn't really something for me - I can walk 1/8 to 1/4 mile before I need to sit down and rest for a while.
Can't drink alcohol (Seizure meds and chemo pills), so no wine
Have no idea about adult education offerings.
There aren't really any sport offerings/recreational leagues for people with disabilities in my town.
The big issue is that I can't drive - hard to get anywhere in the suburbs when you cannot drive.
Jun 12, 2017
I went to the dentist on Wednesday, had no cavities, to the surprised of the hygienist and dentist.
So, I had a visit at MSKCC on Friday. My oncologist there and his fellows are very concerned with my side effects from the weekly pills. Pending the approval of the doctor down at UVA, he wants me to discontinue the medication I am on and get a blood draw every 2 weeks to see how I do. Then when my blood counts drop, he wants me to start the second line medication, which I can take for 6-12 months before it has to be stopped. The second line med might have less side effects - he is hoping that I might tolerate it better.
So what are they saying long-term, bros? How are you feeling?
Jun 13, 2017
Long term as in prognosis? Survival rate for LGLL is greater than 10 years.
Long term as in what happens after I can't take the second line medication? I don't know - I think it is supposed to get as close to remission as is possible with this cancer (the formal term would be hematological remission).
I feel okay, same as I usually do.
It is tough to get around in an area without good public transit when you don't drive. Would Uber be an option? Definitely more convenient and cheaper than a cab.
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