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.

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:

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.

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.