Here is my Cycle page for 2021, if anyone is interested in making a donation of any amount it would be greatly appreciated!!!
Saturday, April 17, 2021
Saturday, December 26, 2020
Part 7: Post-Treatment Life
August 2020:
I had my 100 day follow up with Red Team (stem cell transplant team), with all lab results coming back healthy and normal. The Red Team officially lifted all treatment related restrictions, so I could resume eating a normal diet, interact with people “normally” (maintaining Covid cautions with the rest of the population), etc.
I continued my daily pills for antibiotic, and antiviral, and biweekly Vitamin D pill.
Red Team returned me to the care of my lymphoma doctor going forward.
I returned to work full time, remotely.
I resumed drinking alcohol on my 40th birthday 8/22 after over 100 days of no drinking.
September 2020:
I returned to commuting to work in Manhattan via train on Sept 14, which was coincidentally the day my company fully reopened our main office. Trains were less than 20% occupied and fully enforced to wear masks, which coincided conveniently with my slight continued immunocompromised state.
With the trains being so empty, I have had no concerns at all with catching Covid or anything else.
November 2020:
I had follow up call with Red Team nurse practitioner, to make sure I was adjusting well to normal life, make sure my diet is healthy, and remind me that I’ll be revaccinated for all my childhood vaccines in May. She encouraged a low-beef diet due to the damage that the chemo had done to my cardiovascular system, and was happy to hear that I was eating a meatless diet (with occasional seafood). She considered this a heart healthy diet.
I had visit with my Lymphoma doctor who said my labs all looked great. It was a quick and easy appointment without much to talk about or be concerned about!
December 2020:
I am posting the day after Christmas. I’ve noticed that I continue to get small surges of fatigue, usually right after meals. I also noticed that it is a bit hard to stay hydrated especially overnight, and even if I drink so much water that I need to get up a few times at night.
With the prolonged mild fatigue and dehydration issues, I’ve decided to cut back to nearly no alcohol consumption (considering alcohol doesn’t help either issue). I typically take the month of January off from drinking, but am considering a longer term break, and definitely very strongly curbing alcohol consumption for life. Will let everyone know how this goes.
February 2020:
I had my 6 month follow up CT scan and I am very happy to report that it was 100% clean! This is huge as now I am actually in remission for almost 10 months (since April 2020). Feeling very good overall, pretty normal with just some occasional hints of fatigue day to day (I notice most after eating big meals).
If any readers are affected by HL, please don’t hesitate to leave a message and I’d be more than happy to connect on email to share more of my experiences and advice, or just listen to your experience!!
My email is: anthony.gervaise@gmail.com
Saturday, June 13, 2020
Steroid Side Effects & Half Lifes
Over the course of my treatment, my family and I have noticed an undeniable pattern of irritability! This is of little surprise, as I have been on significant doses of steroids, most recently Dexamethazone (trade name Decadron).
This morning 6/13/20, I just took my last dose of Decadron. I was only still on this drug because of a rash reaction to the stem cell engraftment that you can read about in "Part 6: BEAM Chemo" of my blog. As with most courses of steroids, they started me on a higher daily dose and tapered it off over time.
My prescribed dosage was 16 mg per day on 6/2/20, and then tapered down every 3 days, to 12 mg on 6/5/20, then to 8 mg on 6/9/20, then to 4 mg on 6/11/20, and then done on 6/14/20.
In learning of the half-life of Decadron, I became very interested in calculating and plotting how much Decadron has been in my system each day since I started my latest prescription on 6/2/20.
This was a perfect opportunity to spend a Saturday morning doing something “fun” in the name of SCIENCE!
So happy Saturday! And without further ado you can gaze over the Decadron levels in my system for the month of June. To my own surprise, today there is still 50% of the "peak" level of Decadron in my system.
Over the next few days the levels will taper off fast and I suspect my irritability will improve greatly.
Rest assured, my mother will miss our fierce arguments. 😇
Link to spreadsheet: Dexamethazone Level over Time
Thursday, June 11, 2020
MSK Cycle for Survival 2020
2/8/20:
Some photos from MSK Cycle for Survival 2020. Great event. My team, Team BEAM led by captain Mike Y, raised over $200k!!! We were in first place fundraising in the entire country until after the event, and still ended top 5 in the country at the end of the fundraising year.
The event at Equinox Gym Bryant Park:
The Cycle for Survival NYC Fundraising Leaderboard, Team BEAM at the top!
Our Team BEAM captain Mike was selected by MSK to speak because we were the #1 fundraiser in the NYC region (he spoke last year too). He killed it as always.
Saturday, May 30, 2020
Tuesday, May 19, 2020
Part 6: BEAM Chemotheraphy with Autologous Stem Cell Transplant (May 2020)
4/24:
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 with my mom. Part of this "outpatient" arrangement is that I need someone with me at all times as a "caregiver" and to just generally make sure I don't get hit by a bus etc. I mean the chemo is intended to send my WBC and platelet count down close to ZERO, so important to keep me safe from infection and injury.
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 with my mom. Part of this "outpatient" arrangement is that I need someone with me at all times as a "caregiver" and to just generally make sure I don't get hit by a bus etc. I mean the chemo is intended to send my WBC and platelet count down close to ZERO, so important to keep me safe from infection and injury.
Apt is a 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. My wife relieved my mom as my caregiver from Friday to Sunday. Wife and I walking the East River:
5/18:
Stem cell transplant day. Nurses gave me some dexa and Benadril premeds, then a 10 minute syringe push of my own stem cells. Then I took a nap and they kept an eye on my vitals for a few hours. Not a crazy day. Sent me home with a Neulasta patch to give me shot tomorrow (same thing I got during my GVD treatments). Another Covid test.
5/22:
Needed my first platelet transfusion, which is totally normal and expected. Easy 45 minute infusion.
5/24:
Not much to report over last few days, which is great news!
No nausea, vomiting, extreme fatigue, or mouth sores which were the expected bad side effects.
Really nothing at all to complain about!
Still have all my hair too. :c)
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. My wife relieved my mom as my caregiver from Friday to Sunday. Wife and I walking the East River:
5/17:
Last day of chemo. This is the 26th chemo infusion I’ve had in my life, and hopefully the last ever. It is one day of the “M” in BEAM, and it’s known for causing nasty mouth sores, so I’m instructed to suck on ice before during and after the 30 minute chemo infusion. Sucking on ice cools the blood vessels in the mouth which restricts blood flow and reduces the amount of chemo that travels through those vessels. So the ice helps reduce the occurrence of mouth sores. (Reporting back on this several days later, I did not have any mouth sores pop up at all so I guess I did a good job with the ice!)
Another walk along the East River:
Last day of chemo. This is the 26th chemo infusion I’ve had in my life, and hopefully the last ever. It is one day of the “M” in BEAM, and it’s known for causing nasty mouth sores, so I’m instructed to suck on ice before during and after the 30 minute chemo infusion. Sucking on ice cools the blood vessels in the mouth which restricts blood flow and reduces the amount of chemo that travels through those vessels. So the ice helps reduce the occurrence of mouth sores. (Reporting back on this several days later, I did not have any mouth sores pop up at all so I guess I did a good job with the ice!)
Another walk along the East River:
5/18:
Stem cell transplant day. Nurses gave me some dexa and Benadril premeds, then a 10 minute syringe push of my own stem cells. Then I took a nap and they kept an eye on my vitals for a few hours. Not a crazy day. Sent me home with a Neulasta patch to give me shot tomorrow (same thing I got during my GVD treatments). Another Covid test.
5/19:
A day off - no visits to the treatment building required. Just had an online telehealth call with an NP. Pretty fatigued! Mom and I took a 2 mile round trip walk to central park in the morning, then back to the apt to rest for the remainder of day.
5/22:
Needed my first platelet transfusion, which is totally normal and expected. Easy 45 minute infusion.
My wife relieved my mom again as my caregiver for the weekend.
5/24:
Not much to report over last few days, which is great news!
No nausea, vomiting, extreme fatigue, or mouth sores which were the expected bad side effects.
Really nothing at all to complain about!
Still have all my hair too. :c)
5/25:
Received 2nd platelet transfusion.
Hair started falling out of my head big time so I shaved it down to a “#1” today.
Hair started falling out of my head big time so I shaved it down to a “#1” today.
5/26:
Nothing in particular to report from MSK today.
Afterward the MSK visit, my 75 YO mom and I walked across the 59th Street bridge to Queens and back! Over 5 mile loop! Awesome views, highly recommended. We slept well.
5/27:
Received 3rd platelet transfusion.
Mom and I walked 4 miles to Central Park Belvedere Castle / Shakespeare Garden and back. Met up with my friend Mike for an hour visit which was nice! Lovely spot, check it out!
5/28:
WBC counts are slowly going up, at 3.7 today which is just outside the lower end of the "healthy" range of 4 and above. WBC counts expected to be within healthy range by tomorrow.
NP advised I could be discharged as early as Monday 6/1. The remaining qualifier is to see my platelet numbers maintain 20 or above without requiring any more transfusions. They plan to give me a 4th platelet transfusion tomorrow (Fri 5/29), and then watch me on Sat and Sun. If on Sunday my platelets are still above 20, they will hope to discharge me the next day on Monday 6/1.
5/29:
Platelets at 20, which is the threshold where I just barely don't need another transfusion.
5/30:
Platelets up to 30. Nurse Practitioner anticipates I will be discharged Monday, and able to go home by Wednesday. Did I mention that the view from MSK Koch Center 12th Floor is beautiful? East River and Roosevelt Island.
5/31:
First and only "day off" where I do not see my medical team. I do need to get another Covid test, my favorite!
I decided to completely shave my head today, because my hat was rubbing all the hair off the sides of my head and it was starting to look ridiculous. My facial hair seems to be growing normally so I'll probably grow it out a little.
Here is a photo of my "leukapheresis catheter" central line. I love this thing because it makes lab draws and infusions completely painless as opposed to the dreaded IV needles. But tomorrow my central line and I should be parting ways.
6/1:
My platelets shot up to 94 which is way above the requirement of 50 to get my central line removed. Unfortunately MSK somehow failed to get my removal procedure scheduled today, so it will happen tomorrow morning.
Last night I developed a lumpy red rash on my entire face, and chest, now extended to my waist and most of my back. The medical team said this is relatively common, and prescribed topical steroids. If it gets worse I may need to take some more dexamethazone (boo hoo it I'm sick of steroids because they make it difficult for me to sleep, so hopefully can avoid).
Also the rash is sometimes followed by a fever, so they anticipated I may need to go to MSK Urgent Care Center if my fever spikes over 100.4 F tonight. Sure enough as of my temperature just went up to 99.1 which isn't very high, but is a bit peculiar since it's been consistently under 98.6 F for at least a week.
Did I ever mention that I have a fondness for tugboats? Tiny little things pushing huge barges. Very inspiring. Much respect.
6/2:
I got my central line pulled today. Nurse yanked it out in a split second. Feels great to no longer have tubes dangling off my chest. Now I just have a little bandage in its place.
The rash on my face improved significantly, and the rash got worse on my stomach and lower back. The condition seems to be migrating down my body but stops at my waistline. Doctor prescribed me dexamethazone tablets and a stronger steroid cream for my chest, back and stomach.
The waiting areas in MSK Koch building. Finishes are really over the top, luxury residential amenity space quality stuff.
6/3:
Met with stem cell doctor, who confirmed that I am released to go home.
Arrived home in NJ around 8pm. Felt GREAT to return with my mom back home to my wife and 2 sons. MSK apartment and Koch building were incredibly comfortable throughout my stay, but of course there is no place like home.
My new look for the next month or so:
6/4:
Made a day out of catching up on small work and housework tasks. Felt good to get some things accomplished at the doctor-prescribed relaxed and comfortable pace. Spent a little time in our back yard which I've been dreaming about for the last 3 weeks, and feels like paradise!
6/10:
Had my labs taken and first telehealth appointment since I got home.
The NP said labs indicated that all my blood values were recovering from treatment at normal or better than normal rates.
Just a reminder I’m doing this all on a vegetarian diet! I think my recovery goes a long way to dispel misconceptions that meat is an essential part of a human diet.
Friday, January 31, 2020
Part 5: GVD Chemotherapy with Pembro Clinical Trial (Jan - Apr 2020)
I started GVD with Pembro yesterday 1/30. Started infusion with dexamethasone steroid and Benadryl which made me light headed for about an hour. Then on to the GVD and Pembro which were hardly noticeable at all.
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!
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.
Sunday, January 26, 2020
Part 4: Relapse (Dec 2019)
After ending ABVD treatment in June 2019 and being declared In Remission in July, I happily returned to a very normal and healthy feeling lifestyle in just about every describable way.
In September I began noticing itchiness around my entire body, which I found mildly concerning since itchiness was an initial symptom of my HL. I decided to shrug it off until October when I had a follow up MRI (for spine oncologist Dr. V) and a follow up appointment with bloodwork with Dr. M.
In the October appointments, both my bloodwork and MRI came out great, not indication of relapsing HL. I advised Dr. M of the itchiness but based on the results of my bloodwork and MRI, she was not concerned, simply recommending that I keep my skin moisturized.
From October to December, my itchiness was persistent and seemed to slowly be getting worse. I also noticed wrinkly bags appear under my eyes. I tried 24 hour Claritin and then 24 hour Zyrtec, which did not seem to help. I tried a variety of skin lotions and creams, including those with "analgesics", none of which seemed to help at all
In mid-December I consulted a dermatologist, advising her of my past of HL, and she felt that the chemo may have caused my skin to become more sensitive. She recommended:
1. Using soaps with absolutely no dyes, fragrances or additives, recommending a few brands.
2. Doubling my dose of Zyrtec, to 2 pills a day.
3. Prescribed a cortisone type cream.
Ultimately none of these resulted in any appreciable improvement of the itchiness. The cream applied under the eyes did seem to reduce the wrinkly bags.
I contacted the MSK lyphoma team via online portal, advising that I had a 2 week vacation planned from 12/27/19 to 1/11/20 to Brazil. I was optimistic that symptoms still were not indicative of relapse, so I just noted that the itchiness was a nuisance and asked if there was something they could prescribe to minimize it, especially being that I was going to a hot climate that I thought may worsen the itchiness.
Upon receiving my message, the team was concerned and recommended that my 6 month follow up CT scan (scheduled for late January) be bumped up to December before I left.
I had my CT scan on 12/23, and on 12/26 Dr. Moskowitz called and advised that the CT scan indicated signs of relapse. The new tumors were in my lower neck and my chest. She encouraged that I go enjoy my full 2 week vacation in Brazil, and upon return she would have a PET scan and biopsy set up for the following week. Biopsy would be to confirm that we were still dealing with HL, and that the disease had not somehow changed to NHL (details as to how this would happen, I still do not understand). She remained optimistic that the chances of completely curing me were extremely high.
So I went to Brazil and enjoyed myself, disappointed about relapse and the need for additional treatment, but not too concerned about my ultimate fate.
Upon my return from Brazil I had my PET scan on Monday 1/13, and my biopsy on Thursday 1/16 (of the chest tumor).
On Wednesday 1/22, Dr. M called to confirm the biopsy indicated HL, and discuss the standard next treatment for relapsed HL:
- 2 cycles of GVD (4 weekly treatments, with a 1 week break in the middle). She encouraged me to consider an ongoing clinical trial, combining immunotherapy drug with the GVD treatment.
- Around mid-March, hospitalization for a week straight of chemotherapy treatment combined with an autonomous stem cell transplant (ASCT), meaning my own stem cells would be harvested then returned to my body. The ASCT is neccessary because the chemo is so harsh, my body will require stem cells returned to replenish those damaged by the chemo treatment.
- Immediately after chemo / ASCT, 2 weeks further in the hospital for observation and resolution of side effects.
- After the 3 weeks in the hospital, return home for a full 2 months or more (!!!). Due to my weakened immune system, I need to stay home to reduce risk of infection.
During the call she also asked if I would like to try steroid Prednisone to see if it helps reduce itchiness, to which I said yes (Prednisone was very effective at reducing my back pain after HSS Dr. L prescribed in Jan 2019, before I started chemo). Ultimately after 5 days of use I determined Prednisone (and probably nothing but chemo itself) was not improving itchiness. Dr. M concurred at my next appointment.
On 1/28/20 I had my pre-chemo appointment with Dr. M. I formally signed off to be part of the clinical trial which entails use of the immunotherapy drug “pembro” to facilitate the effectiveness of GVD chemo to get be back into remission quickly. Dr. M explained that pembro + GVD had gotten 25 of 26 patients to date to remission in just 2 cycles (4 treatments over 6 weeks), compared to a rate of only 50%-60% when GVD is used alone. This is a significant improvement so I signed up.
Dr. M showed me a PET scan image from 1/13, showing several very clear lymph nodes with cancer (all black spots in my torso, see photo here). She diagnosed my current condition as Stage 2 HL, as I had expected.
In September I began noticing itchiness around my entire body, which I found mildly concerning since itchiness was an initial symptom of my HL. I decided to shrug it off until October when I had a follow up MRI (for spine oncologist Dr. V) and a follow up appointment with bloodwork with Dr. M.
In the October appointments, both my bloodwork and MRI came out great, not indication of relapsing HL. I advised Dr. M of the itchiness but based on the results of my bloodwork and MRI, she was not concerned, simply recommending that I keep my skin moisturized.
From October to December, my itchiness was persistent and seemed to slowly be getting worse. I also noticed wrinkly bags appear under my eyes. I tried 24 hour Claritin and then 24 hour Zyrtec, which did not seem to help. I tried a variety of skin lotions and creams, including those with "analgesics", none of which seemed to help at all
In mid-December I consulted a dermatologist, advising her of my past of HL, and she felt that the chemo may have caused my skin to become more sensitive. She recommended:
1. Using soaps with absolutely no dyes, fragrances or additives, recommending a few brands.
2. Doubling my dose of Zyrtec, to 2 pills a day.
3. Prescribed a cortisone type cream.
Ultimately none of these resulted in any appreciable improvement of the itchiness. The cream applied under the eyes did seem to reduce the wrinkly bags.
I contacted the MSK lyphoma team via online portal, advising that I had a 2 week vacation planned from 12/27/19 to 1/11/20 to Brazil. I was optimistic that symptoms still were not indicative of relapse, so I just noted that the itchiness was a nuisance and asked if there was something they could prescribe to minimize it, especially being that I was going to a hot climate that I thought may worsen the itchiness.
Upon receiving my message, the team was concerned and recommended that my 6 month follow up CT scan (scheduled for late January) be bumped up to December before I left.
I had my CT scan on 12/23, and on 12/26 Dr. Moskowitz called and advised that the CT scan indicated signs of relapse. The new tumors were in my lower neck and my chest. She encouraged that I go enjoy my full 2 week vacation in Brazil, and upon return she would have a PET scan and biopsy set up for the following week. Biopsy would be to confirm that we were still dealing with HL, and that the disease had not somehow changed to NHL (details as to how this would happen, I still do not understand). She remained optimistic that the chances of completely curing me were extremely high.
So I went to Brazil and enjoyed myself, disappointed about relapse and the need for additional treatment, but not too concerned about my ultimate fate.
Upon my return from Brazil I had my PET scan on Monday 1/13, and my biopsy on Thursday 1/16 (of the chest tumor).
On Wednesday 1/22, Dr. M called to confirm the biopsy indicated HL, and discuss the standard next treatment for relapsed HL:
- 2 cycles of GVD (4 weekly treatments, with a 1 week break in the middle). She encouraged me to consider an ongoing clinical trial, combining immunotherapy drug with the GVD treatment.
- Around mid-March, hospitalization for a week straight of chemotherapy treatment combined with an autonomous stem cell transplant (ASCT), meaning my own stem cells would be harvested then returned to my body. The ASCT is neccessary because the chemo is so harsh, my body will require stem cells returned to replenish those damaged by the chemo treatment.
- Immediately after chemo / ASCT, 2 weeks further in the hospital for observation and resolution of side effects.
- After the 3 weeks in the hospital, return home for a full 2 months or more (!!!). Due to my weakened immune system, I need to stay home to reduce risk of infection.
During the call she also asked if I would like to try steroid Prednisone to see if it helps reduce itchiness, to which I said yes (Prednisone was very effective at reducing my back pain after HSS Dr. L prescribed in Jan 2019, before I started chemo). Ultimately after 5 days of use I determined Prednisone (and probably nothing but chemo itself) was not improving itchiness. Dr. M concurred at my next appointment.
On 1/28/20 I had my pre-chemo appointment with Dr. M. I formally signed off to be part of the clinical trial which entails use of the immunotherapy drug “pembro” to facilitate the effectiveness of GVD chemo to get be back into remission quickly. Dr. M explained that pembro + GVD had gotten 25 of 26 patients to date to remission in just 2 cycles (4 treatments over 6 weeks), compared to a rate of only 50%-60% when GVD is used alone. This is a significant improvement so I signed up.
Dr. M showed me a PET scan image from 1/13, showing several very clear lymph nodes with cancer (all black spots in my torso, see photo here). She diagnosed my current condition as Stage 2 HL, as I had expected.
Part 3: ABVD Chemotherapy & Remission (Jan - Jul 2019)
As my diagnosis was HL, I was put under the care of MSK's Lymphoma Team, lead by Dr. Moskowitz.
My prescribed treatment as is fairly routine for HL, was 12 treatments ("6 cycles") of ABVD chemotherapy over the course of 6 months.
Treatment entailed infusion via IV of 4 chemotherapy drugs:
Adriamycin (aka Doxorubuzone)
Bleomycin
Vinblastine
Dacarbazine
Also part of the infusion was a steroid and anti-nausea medication, to counteract the side affects of the ABVD drugs themselves.
I was also given about 6 other drugs (some prescription, some OTC) to take orally to counteract the side affects of ABVD. In total including the ABVD itself, I counted over 12 medications that I was on during the treatment period.
I began this treatment on 1/24/19 and completed as scheduled on 6/27/19, with relatively few complications.
The anti-nausea drugs did their part, I rarely felt nauseous and did not ever vomit. In fact thanks to the steroids and the ravaging appetite that ensued, I very happily put on 25 pounds throughout the course of my 6 month treatment! I started at 178 lbs and finished at 203 lbs. (I only lost about half of those pounds in the subsequent 6 months. Not complaining!)
I will discuss all side affects and complications in detail in an update to this post.
After another PET scan in July, I had a follow up appointment with Dr. Moskowitz on 7/25/19, at which I was formally declared "In Remission", aka "No Evidence of Disease"!!!
Here’s me in early July 2019, within a week of my 12th and final treatment:
My prescribed treatment as is fairly routine for HL, was 12 treatments ("6 cycles") of ABVD chemotherapy over the course of 6 months.
Treatment entailed infusion via IV of 4 chemotherapy drugs:
Adriamycin (aka Doxorubuzone)
Bleomycin
Vinblastine
Dacarbazine
Also part of the infusion was a steroid and anti-nausea medication, to counteract the side affects of the ABVD drugs themselves.
I was also given about 6 other drugs (some prescription, some OTC) to take orally to counteract the side affects of ABVD. In total including the ABVD itself, I counted over 12 medications that I was on during the treatment period.
I began this treatment on 1/24/19 and completed as scheduled on 6/27/19, with relatively few complications.
The anti-nausea drugs did their part, I rarely felt nauseous and did not ever vomit. In fact thanks to the steroids and the ravaging appetite that ensued, I very happily put on 25 pounds throughout the course of my 6 month treatment! I started at 178 lbs and finished at 203 lbs. (I only lost about half of those pounds in the subsequent 6 months. Not complaining!)
I will discuss all side affects and complications in detail in an update to this post.
After another PET scan in July, I had a follow up appointment with Dr. Moskowitz on 7/25/19, at which I was formally declared "In Remission", aka "No Evidence of Disease"!!!
Here’s me in early July 2019, within a week of my 12th and final treatment:
Part 2: Diagnosis (Jan 2019)
Having no relief from my internist's prescribed medication per my previous post, I arranged a visit to an Orthopedist at Hospital of Special Surgery (HSS) in New York City.
This appointment took place on Monday 1/7/19 with Dr. Ryan Lingor of HSS. Upon hearing of my back and chest pain, Dr. Lingor quickly recognized my pain to be radiating from a pinched and/or herniated disc in my spine. He ordered a full-spine MRI at HSS the very next day.
On Tuesday 1/8/19 my MRI was performed. Upon leaving the MRI room, the image technician asked a quick question to the effect of "Did you recently suffer an injury to your back?", to which I replied "no".
On Wednesday 1/9/19 around noon, Dr. Lingor called me and asked if I had a few minutes to talk. He went on to explain that my MRI revealed a tumor on my spine, and that he was referring me directly to spine oncologist Dr. Max Vaynrub at Memorial Sloan Kettering Cancer Center. (My first "WTF" moment!) In a bit of a daze I finished my work day (I had a meeting to run only minutes later!).
On Thursday 1/17/19, I attended appointment with Dr. Vaynrub, who advised that per his review of my MRI and an X-ray that I actually had tumors on 3 of my vertebrae, and recommended that I be admitted to MSK hospital immediately for further diagnosis (My second "WTF!" moment). He advised this hospital visit may last up to 2 weeks. I had expected to go straight to work from the appointment on 1/17, so I had to make a sudden call to my boss to advise of the dramatic change in my schedule!
I was admitted on 1/17 as planned, and began to undergo scanning immediately. The first day included a CT scan, more X-rays, and a PET scan later in the day.
On Friday 1/18 I woke up around 7am to a room of several doctors and other staff, who advised me that the PET scan revealed tumors in my neck and groin as well (my third and final "WTF!" moment). Preliminary diagnoses were pointing towards Lymphoma, but I needed to have more scans performed, and a needle biopsy of my groin tumor later in the day.
On Saturday 1/19 I work up around 7am again to a room full of doctors and staff, who advised me that my biopsy revealed a diagnosis of Hodgkin Lymphoma (HL). This was relatively positive and "relieving" diagnosis, as HL is a highly treatable form of cancer with a very high rate of survival, in fact one of the highest of all cancers.
My diagnosis was considered Stage 4, as follows:
Stage 1: Cancer found in one area of lymph nodes.
Stage 2: Cancer found in more than one area of lymph nodes, both areas being Above, or Below, the Diaphragm.
Stage 3: Cancer found in more than one area of lymph notes, affecting lymph nodes BOTH above AND below the Diaphragm.
Stage 4: Cancer metastasized from lymph system into another organ. - MY DIAGNOSIS (in my case, the vertebrae were the "other organ").
I was told treatment would be 6 cycles of "ABVD" chemotherapy (12 treatments bi-weekly over 6 months), scheduled to begin the following Thursday 1/24.
This appointment took place on Monday 1/7/19 with Dr. Ryan Lingor of HSS. Upon hearing of my back and chest pain, Dr. Lingor quickly recognized my pain to be radiating from a pinched and/or herniated disc in my spine. He ordered a full-spine MRI at HSS the very next day.
On Tuesday 1/8/19 my MRI was performed. Upon leaving the MRI room, the image technician asked a quick question to the effect of "Did you recently suffer an injury to your back?", to which I replied "no".
On Wednesday 1/9/19 around noon, Dr. Lingor called me and asked if I had a few minutes to talk. He went on to explain that my MRI revealed a tumor on my spine, and that he was referring me directly to spine oncologist Dr. Max Vaynrub at Memorial Sloan Kettering Cancer Center. (My first "WTF" moment!) In a bit of a daze I finished my work day (I had a meeting to run only minutes later!).
On Thursday 1/17/19, I attended appointment with Dr. Vaynrub, who advised that per his review of my MRI and an X-ray that I actually had tumors on 3 of my vertebrae, and recommended that I be admitted to MSK hospital immediately for further diagnosis (My second "WTF!" moment). He advised this hospital visit may last up to 2 weeks. I had expected to go straight to work from the appointment on 1/17, so I had to make a sudden call to my boss to advise of the dramatic change in my schedule!
I was admitted on 1/17 as planned, and began to undergo scanning immediately. The first day included a CT scan, more X-rays, and a PET scan later in the day.
On Friday 1/18 I woke up around 7am to a room of several doctors and other staff, who advised me that the PET scan revealed tumors in my neck and groin as well (my third and final "WTF!" moment). Preliminary diagnoses were pointing towards Lymphoma, but I needed to have more scans performed, and a needle biopsy of my groin tumor later in the day.
On Saturday 1/19 I work up around 7am again to a room full of doctors and staff, who advised me that my biopsy revealed a diagnosis of Hodgkin Lymphoma (HL). This was relatively positive and "relieving" diagnosis, as HL is a highly treatable form of cancer with a very high rate of survival, in fact one of the highest of all cancers.
My diagnosis was considered Stage 4, as follows:
Stage 1: Cancer found in one area of lymph nodes.
Stage 2: Cancer found in more than one area of lymph nodes, both areas being Above, or Below, the Diaphragm.
Stage 3: Cancer found in more than one area of lymph notes, affecting lymph nodes BOTH above AND below the Diaphragm.
Stage 4: Cancer metastasized from lymph system into another organ. - MY DIAGNOSIS (in my case, the vertebrae were the "other organ").
I was told treatment would be 6 cycles of "ABVD" chemotherapy (12 treatments bi-weekly over 6 months), scheduled to begin the following Thursday 1/24.
Part 1: Symptoms (Oct - Dec 2018)
Symptom 1: Back Pain
Around November of 2018 I began to notice mild discomfort in the middle of my back. It was a nuisance but manageable, so I did not seek a doctors opinion for over a month.
On 12/23/18, I lifted a have object in my home. Within 24 hours, by back discomfort transformed into a throbbing pain. Unfortunately I had a 4 day road trip planned from 12/25 to 12/29 to celebrate the holidays with friends and family in upstate New York (about a 4 hour drive from where we live in New Jersey).
During the holidays I couldn't find any way to reduce the pain. Consuming moderate amounts of alcohol didn't seem to help either.
Upon returning home on 12/29, I immediately reached out to my internist who fortunately had availability to see me on 12/31. By the date of my appointment, I had also noticed pain in my chest (directly in front of the back pain), and off to the left side of my chest pain in my rib cage.
Symptom 2: Itchiness & Rashes
I cannot recall when I first noticed this, but I imagine it started late summer 2018. I had itchiness and rashes developing on my elbows and shins. Use of several different cortizone type creams did not seem to help this condition.
On 12/31, I visited my internist and discussed all of the above noted conditions. He prescribed an anti-inflammatory pill Naproxen for the chest and back pain, diagnosing the pain in all 3 locations as most likely simple muscle strains. He also gave me a prescription for 5 pills of Percocet in the case of extreme pain flair-ups.
For the rashes he prescribed a topical cream (I forget now what it was).
After days of use, none of the above prescribed medications gave any noticeable relief of any of the symptoms.
Around November of 2018 I began to notice mild discomfort in the middle of my back. It was a nuisance but manageable, so I did not seek a doctors opinion for over a month.
On 12/23/18, I lifted a have object in my home. Within 24 hours, by back discomfort transformed into a throbbing pain. Unfortunately I had a 4 day road trip planned from 12/25 to 12/29 to celebrate the holidays with friends and family in upstate New York (about a 4 hour drive from where we live in New Jersey).
During the holidays I couldn't find any way to reduce the pain. Consuming moderate amounts of alcohol didn't seem to help either.
Upon returning home on 12/29, I immediately reached out to my internist who fortunately had availability to see me on 12/31. By the date of my appointment, I had also noticed pain in my chest (directly in front of the back pain), and off to the left side of my chest pain in my rib cage.
Symptom 2: Itchiness & Rashes
I cannot recall when I first noticed this, but I imagine it started late summer 2018. I had itchiness and rashes developing on my elbows and shins. Use of several different cortizone type creams did not seem to help this condition.
On 12/31, I visited my internist and discussed all of the above noted conditions. He prescribed an anti-inflammatory pill Naproxen for the chest and back pain, diagnosing the pain in all 3 locations as most likely simple muscle strains. He also gave me a prescription for 5 pills of Percocet in the case of extreme pain flair-ups.
For the rashes he prescribed a topical cream (I forget now what it was).
After days of use, none of the above prescribed medications gave any noticeable relief of any of the symptoms.
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