Had my mom and 2 close friends there to make the 4 hour treatment session fly by! This kind of support is invaluable!
Went home and to bed a little more tired than an average day. Overall this treatment seems easier than ABVD.
One nice thing is the doctor didn’t prescribe all the pills to take at home to counteract side affects (ABVD required pills: steroid, Acyclovir to fight infection, Omeprazol for nausea, colace for regularity, and several others). I don’t have ANY pills to take except for Ambien which I asked for on Tuesday due to itchiness keeping me up.
I already felt a little less itchy last night so seems like the chemo is working fast.
So feeling optimistic my life will continue fairly normally for next 6 weeks until hopeful remission, then onto the stem cell / Beam chemo treatment in mid March.
Also important to note, my pre chemo lab results came back perfect, that is 41 out of 41 tested levels were within the healthy range!
3/10/20 update:
I completed my 4 treatments of GVD with Pembro, which went largely without issue (which is great) except for this past week after the 4th treatment, when I had recurring low fevers (99.5 F max) and generally felt very fatigued, dehydrated, hangover-ish kind of crappy, especially in the afternoons, throughout the week. But I got through out and bounced back by the weekend.
I had my follow up PET scan last Friday 3/6, and results were discussed with my doctor today 3/10. While my treatment resolved nearly all of the relapsed cancer in my lymph nodes, the doctor advised me this week that one note did not completely resolve. Therefore I am disappointed to report that per the clinical trial protocol I need to repeat all 4 treatments again!!!
First image shows January PET scan on right, and 3/6 PET scan on left. As you can see, lots of dark "hot" spots in my torso on the right side, and none visible on the left.
However looking at cross section image below, my doctor advised that the small bright pink spot circled in blue is the one node that has not completely resolved. This is the same node you see in dark below my heart in the "before" scan above (all the nodes that were above my heart are 100% resolved).
This is frustrating as I had everything lined up with work and personal life to be hospitalized in less than 2 weeks on 3/23 for the stem cell / high-dose Beam chemotherapy. Now this pushes out to early May and will impose upon my precious summer.
That said, the important part is that the current treatment is working well, it just didn't quite get to 100% resolution.
4/21 update:
Now I’ve powered through 4 more treatments mostly unscathed. I got a mouth sore on side of tongue, resolved itself over about 3 weeks with the help of prescription lidocaine for discomfort while eating. I got another superficial blood clot, this one in my hand at the site of a chemo infusion. This is my 3rd blood clot since I started chemo last year, and they suck for 2 reasons. First because it’s about a 6 hour ordeal at the hospital to have it reviewed and sonogrammed. Second because regardless of solution it takes almost 2 weeks for the pain to go away. This time I got prescribed a subcutaneous shot that I got to give myself in the belly twice a day for 10 days. That was fun.
Oh and Covid 19 happened, so along with the rest of the world I’ve been nestled safely at home with basically no in person human interaction other than my visits to MSK.
Otherwise the second round of 4 treatments went okay, after the Neulasta I get bad hangover feeling for about 3 days straight, and then some bone aches for a few days after that. Surprisingly the treatments that I do NOT get Neulasta, I feel basically no side effects.
Today 4/21 I got the trifecta, CT scan, PET scan, and thoracic spine MRI all in one day. The MRI is for my spine oncologist as a 6 month follow up, and I’m hopeful per my last appt with him that this will be my last MRI.
I have consultations with my ASCT (autologous stem cell transplant) doctor, my lymphoma doctor, and my spine oncologist over the next week so I’ll provide another update soon.
4/24 update:
Had appointment with ASCT doctor. She confirmed per the PET scan that I am in back in remission!!!
And she confirmed that my stem cell harvest is confirmed for 5/5, and my hospitalization for high dose chemo and stem cell transplant is scheduled to begin 5/11.
Here we go!
5/1:
Started giving myself 3 shots of Neupogen in the belly once per day. This is to stimulate stem cell production.
5/2:
Covid tested. Long q tips up each nostril. Very pleasant. (Confirmed negative on 5/5)
5/4:
Central line catheter placed into my chest, so now 2 Capped off tubes are hanging off of my chest. About an hour procedure. I forgot to fast the morning of, so they had to do this procedure with local anesthesia instead of full sedation. Not a big deal, I got the full experience. Some moments of brief pain/discomfort but nothing crazy.
5/5:
Stem cell harvest day. The harvest took 4 hours and used both of the tubes on my catheter to take blood, run through centrifuge to extract stem cells, then return blood to my body. The goal is to harvest at least 5M stem cells per kg of body weight, and they schedule 3 days x 4 hours to ensure enough time to harvest that many. Some how I got 19M / kg in my first 4 hour visit! So that was easy.
5/6:
Follow up appt with ASCT doctor. Everything is looking good for start of high dose chemo next week!
5/11:
Checked into MSK residence apartment on E 75th Street in UES. Nice sized one bedroom, 2 blocks from treatment building, convenient and beats being hospitalized.
5/12:
“B” treatment from BEAM acronym. Less than 4 hours for total treatment with premeds. No major side effects, just a bit tired afterwards.
5/13 - 5/16:
Each day for 4 days straight received both “E” and “A” chemo drugs. Again these were about 4 hour total treatments, usually done by 1pm with minimal side effects afterwards.
5/17:
Last day of chemo (maybe in my life??!). The “M” which can give nasty mouth sores so I’m instructed to suck on ice before during and after the 30 minute chemo infusion.
5/18:
Stem cell transplant day.
I had my follow up PET scan last Friday 3/6, and results were discussed with my doctor today 3/10. While my treatment resolved nearly all of the relapsed cancer in my lymph nodes, the doctor advised me this week that one note did not completely resolve. Therefore I am disappointed to report that per the clinical trial protocol I need to repeat all 4 treatments again!!!
First image shows January PET scan on right, and 3/6 PET scan on left. As you can see, lots of dark "hot" spots in my torso on the right side, and none visible on the left.
However looking at cross section image below, my doctor advised that the small bright pink spot circled in blue is the one node that has not completely resolved. This is the same node you see in dark below my heart in the "before" scan above (all the nodes that were above my heart are 100% resolved).
This is frustrating as I had everything lined up with work and personal life to be hospitalized in less than 2 weeks on 3/23 for the stem cell / high-dose Beam chemotherapy. Now this pushes out to early May and will impose upon my precious summer.
That said, the important part is that the current treatment is working well, it just didn't quite get to 100% resolution.
4/21 update:
Now I’ve powered through 4 more treatments mostly unscathed. I got a mouth sore on side of tongue, resolved itself over about 3 weeks with the help of prescription lidocaine for discomfort while eating. I got another superficial blood clot, this one in my hand at the site of a chemo infusion. This is my 3rd blood clot since I started chemo last year, and they suck for 2 reasons. First because it’s about a 6 hour ordeal at the hospital to have it reviewed and sonogrammed. Second because regardless of solution it takes almost 2 weeks for the pain to go away. This time I got prescribed a subcutaneous shot that I got to give myself in the belly twice a day for 10 days. That was fun.
Oh and Covid 19 happened, so along with the rest of the world I’ve been nestled safely at home with basically no in person human interaction other than my visits to MSK.
Otherwise the second round of 4 treatments went okay, after the Neulasta I get bad hangover feeling for about 3 days straight, and then some bone aches for a few days after that. Surprisingly the treatments that I do NOT get Neulasta, I feel basically no side effects.
Today 4/21 I got the trifecta, CT scan, PET scan, and thoracic spine MRI all in one day. The MRI is for my spine oncologist as a 6 month follow up, and I’m hopeful per my last appt with him that this will be my last MRI.
I have consultations with my ASCT (autologous stem cell transplant) doctor, my lymphoma doctor, and my spine oncologist over the next week so I’ll provide another update soon.
4/24 update:
Had appointment with ASCT doctor. She confirmed per the PET scan that I am in back in remission!!!
And she confirmed that my stem cell harvest is confirmed for 5/5, and my hospitalization for high dose chemo and stem cell transplant is scheduled to begin 5/11.
Here we go!
5/1:
Started giving myself 3 shots of Neupogen in the belly once per day. This is to stimulate stem cell production.
5/2:
Covid tested. Long q tips up each nostril. Very pleasant. (Confirmed negative on 5/5)
5/4:
Central line catheter placed into my chest, so now 2 Capped off tubes are hanging off of my chest. About an hour procedure. I forgot to fast the morning of, so they had to do this procedure with local anesthesia instead of full sedation. Not a big deal, I got the full experience. Some moments of brief pain/discomfort but nothing crazy.
5/5:
Stem cell harvest day. The harvest took 4 hours and used both of the tubes on my catheter to take blood, run through centrifuge to extract stem cells, then return blood to my body. The goal is to harvest at least 5M stem cells per kg of body weight, and they schedule 3 days x 4 hours to ensure enough time to harvest that many. Some how I got 19M / kg in my first 4 hour visit! So that was easy.
5/6:
Follow up appt with ASCT doctor. Everything is looking good for start of high dose chemo next week!
5/11:
Checked into MSK residence apartment on E 75th Street in UES. Nice sized one bedroom, 2 blocks from treatment building, convenient and beats being hospitalized.
5/12:
“B” treatment from BEAM acronym. Less than 4 hours for total treatment with premeds. No major side effects, just a bit tired afterwards.
5/13 - 5/16:
Each day for 4 days straight received both “E” and “A” chemo drugs. Again these were about 4 hour total treatments, usually done by 1pm with minimal side effects afterwards.
5/17:
Last day of chemo (maybe in my life??!). The “M” which can give nasty mouth sores so I’m instructed to suck on ice before during and after the 30 minute chemo infusion.
5/18:
Stem cell transplant day.
