Tag Archives: mantle cell lymphoma

Cancer, Health, Mantle Cell Lymphoma (MCL)

Likely Third Hospitalization This Year (So Far)

Well, this morning began with a bang and bloody mess.

I was in abdominal pain when I woke up at 5 AM this morning, but bending over to clean up after Sachiko when she used the puppy pad had me leave a bigger mess on my clothes and on the floor than the mess she made. I called out for Vicky’s help, she watched over and cleaned up after the pups while I stripped out of my clothes and cleaned up after myself.

I posted my original email to Dr. H.A. Nguyen (my internal medicine doctor for over 16 years) as Doing My Best to Persist (UPDATED) this morning.  Since writing that blog entry, I’ve had a number of conversations with Kaiser-Permanente, my wife, and our family & friends.

Last I spoke with Kaiser, they were still on a conference call between Oncology, Internal Medicine, and Infectious Diseases.  I repeatedly asked to remain as outpatient rather than inpatient, but they are concerned, saying they want bloodwork, imaging, monitoring, and likely IV fluids.  I had IV chemo scheduled for tomorrow, but that is likely going to be postponed a few weeks pending today’s results.

Long story short: I previously had Acute Bronchitis, they put me on strong doses of medications so I could remain home rather than hospitalized, it caused all my numbers to plummet so low they literally hit 0.00 mg/ul for WBC and ANC, so they gave me several days of IV transfusions and Zarxio, and now I’ve had bloody bowel movements and severe abdominal cramps for the last two weeks.  2-4 days is acceptable given my history, 2 weeks is seriously dangerous and concerning.

Repeatedly Hospitalized This Year (2021)

Repeatedly Hospitalized This Year (2021)

Repeatedly Hospitalized This Year (2021)

Repeatedly Hospitalized This Year (2021)

Since we now have not only two Shelties, but THREE!  Having family or friends nearby to watch, board, or housesit is of concern during my repeated hospital stays is becoming of increasing concern for us.

Eventually my cancer will claim me, despite our best efforts to keep it at bay. I wrote $15K/dog as a $45K “living trust” for the care, feeding, love of our dogs should I expire.  I’ll need to update it this week and put it on file as public record in the State of Virginia with our attorneys at Friedlander & Friedlander and Celeste E. Scott, Esq.  Both Vicky and our attorneys have copies of my Last Will and Testament, Durable Power of Attorney granted in perpetuity without termination to Victoria V. Foreman.

It seems excessive, but I’ve been hospitalized numerous times these last few years, and I’ve lost track of how many times I’ve undergone chemo protocols, blood transfusions, and hospital stays.  Just this year alone was $70K for a week in February with another $110K for another week.  We’re still contesting $14K in medical bills that was billed to us rather than our insurance.

Our three Shelties (Kiyomi, Toshiro, Sachiko)
Cancer, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL)

Fourth Month of Remission

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For the Love of Family… Together.
Kaiser Permanante called to say that my latest PET/CT scan showed no active lymphomas. I am now in my fourth month of remission since my February 2020 PET/CT scan.
 
I do have an enlarged and impaired spleen due to my bone marrow transplant. They will continue to monitor me every two weeks, with my next abdominal ultrasound in two months and my next PET/CT scan in three months.
 
It means I may go for months, years, or the rest of my life with a depressed platelet count. I was unaware that the spleen was responsible for platelet counts. Kaiser Permanante and Johns Hopkins will be discussing this further with us.
 
We are very thankful to God and to all our family & friends for their love and support these past two years. 💕🙏🏻✌🏻
 

…

I am still immunocompromised (neutropenic, lymphopenic) due to my chemotherapy. I will still undergo “maintenance chemotherapy” for the next 3 years to keep my cancer at bay. What this means is I may have a fighting chance of beating this cancer.

In speaking with a good friend and former co-worker from Sophos, I’m told the spleen is the organ that removes platelets from the bloodstream, so if it is overactive, it will remove them too soon (causing a reduced platelet count and lowering your ability to clot in response to injuries or cuts).  In his case, they discussed removing his spleen.

Kaiser Permanante tells me they will be monitoring my blood weekly, doing abdominal ultrasounds every 2 months to monitor my spleen, and full-body PET/CT scans every 3 months to monitor my cancer (and hopefully my continued remission).  We have to ask if that is what they suspect with my spleen and platelets, it wasn’t well explained by my Kaiser oncologist, but I’m hoping Hopkins will be thorough in discussing it with us.

Cancer, Coronavirus, Everyday Life, Mantle Cell Lymphoma (MCL)

Cancer in the Age of Coronavirus

Prominent Signage around Kaiser-Permanente
Prominent Signage around Kaiser-Permanente

As I’m visiting different Kaiser-Permanente facilities in DC and northern Virginia, we noticed the prominent signage and got stopped by numerous security guards and medical staff to inquire about my N95 mask.  With each, I explain that I am a cancer patient, that I am immunocompromised, and I show my medical ID bracelet or Kaiser-Permanente member ID card if asked.

When we met with my oncologist today, she wore her mask and kept a good 6-foot distance from me as we spoke.  She voiced her concerns that I am at extreme risk for Coronavirus between my decreased neutrophils, lymphocytes, red blood cells, white blood cells, and platelets.

With my weekly Rituxan therapy, I was running a greater risk of lymphopenia since:

Rituxan (rituximab) can induce prolonged B lymphopenia and expose patient to infectious complications. It has been well-documented in most of the oncologic studies.   All CD20+ cells are affected by monoclonal antibody rituximab, or other anti-CD20 monoclonal antibodies, as well-obinutuzumab, ofatumumab, veltuzumab. If you look at the basic blood cell count you could see lymphopenia in most of patients treated with rituximab. This lymphopenia is deep and long-lasting. There are some publications that pointed to higher risk for lymphoma relapse if lymphopenia persist longer than 6 months after rituximab treatment.

Both Johns Hopkins and Kaiser-Permanente agree that I have an unusual case of aggressive mantle cell lymphoma for which they have no data.  Given that I am on my third remission, that I had two previous relapses of aggressive lymphomas after two to three months, they agreed that I should have “maintenance chemotherapy” of Rituxan monthly for the next three years.  They will be monitoring me closely with telemedicine visits, frequent PET/CT scans, and weekly blood draws.

And so I continue to take it day-by-day, week-by-week, and month-by-month.  I’ll no longer get my hopes too high or celebrate when a PET scan is clear or a week’s bloodwork is good, but I’ll be thankful and grateful for both the good news and my time.  If we can go for several months or a year without a relapse, then truly can I relax a it more, breathe easier, and truly give thanks or celebrate my time free from Stage 4 Mantle Cell Lymphoma.

Cancer, Mantle Cell Lymphoma (MCL)

Still Alive, Still Kicking

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Simply thankful to be here

Another day in paradise as I receive IV chemo and wait to meet with our oncologist to discuss my history, treatment, and prognosis. This is now my third remission in two years, with recurrences of aggressive Mantle Cell Lymphoma after 2-3 months of each remission. Hopkins and NIH say they have no data for unusual cases such as mine, I’m already here longer than other patients with similar cases have been.

I will likely be on “maintenance chemotherapy” for the next three years.

I’m grateful for every day I’m still here and able to spend it with you.

Cancer, Family, Health Barometer, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL)

One Day at a Time (my current status as of Fri, 21-Feb-2020)

Another Day of IV Chemotherapy at Kaiser-Permanente

So my vaccination schedule and history have been restarted, starting with all the vaccinations from birth and childhood into adolescence and adulthood.  I had 3 intramuscular shots into my left arm and 5 intramuscular shots into my right arm (my dominant arm).  It was my left arm that was sore and causing me a stiff shoulder for a day or two.

Since my gastroenterologist determined it likely that I have radiation-induced proctitis and colitis, I began taking Carafate Enema once or twice each day to reduce the rectal bleeding and sloughing of the mucusal lining.  I still take two Lomotil and one Oxycodone (5mg) to reduce my diarrhea and abdominal cramps while the carafate addresses the bleeding.

I’ve been receiving IV immunotherapy and chemotherapy every Friday since we returned from the Seattle Cancer Care Alliance.  My platelets and neutrophils have been too low for me to resume my per-oral chemotherapy.  Ideally, I ought to be receiving R2 (Rituxan/Revlimid) to reduce or maintain my mantle cell lymphoma.

Kaiser-Permanente and Johns Hopkins would like to perform a full-body PET scan on Saturday, February 29th, 2020.  We’re hoping to determine the full extent of my cancer and its progression (if any).  From there, we’ll determine if I can remain on R2 (Rituxan/Revlimid), if I would need targeted radiation therapy to reduce specific tumors or clusters, or whether I would need to start another clinical trial either at Seattle Cancer Care Alliance (SCCA), the National Institutes of Health (NIH), or elsewhere.

Johns Hopkins would like to see me on Thursday, March 19th, for a follow-up appointment to my post-BMT (Bone Marrow Transplant).  This would have been my 6-month follow-up appointment, but we missed that appointment since we were already in Seattle beginning cancer care.  Dr. Bolanos-Meade will be reviewing my numbers, history, and looking for any symptoms of Graft vs Host Disease (GvHD).  In previous conversations with Dr. Meade at Johns Hopkins, it was disappointing to him and our medical team that my bone marrow transplant was unsuccessful.  I relapsed into aggressive mantle cell lymphoma less than three months after my transplant.  My bone marrow and blood product have performed poorly since, but it’s indeterminate whether it’s just young bone marrow that is taking time to mature, or whether there is a greater issue yet undiagnosed and unresolved causing my blood product to be consumed as quickly as my bone marrow can produce it.  Radiation-induced colitis or other unknown tumors are two possible causes for this latter idea.

And so it goes… I continue to take it day-by-day.  I am still on Long Term Disability and have not yet returned to work since I was hospitalized for a week in November 2019.  Once we know the results of the PET scan and meet with Johns Hopkins to discuss the results, prognosis, and treatment, we’ll know where we stand, what we’ll do next, and whether I can return to work part-time while continuing cancer treatment or if we need to begin yet another protocol or clinical trial.

Cancer, Family, Friends & Co-Workers, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL)

“Just One More Level… please?” (120 days later, cancer returns)

Just One More Level… please?

Almost two years ago, I was diagnosed with Stage 4 Mantle Cell Lymphoma. 2018 was a terrible rollercoaster, and 2019 held out the hope of recovery and remission.

120 days ago, I celebrated my “birthday” with a bone marrow transplant (Allogeneic Hematopoietic Stem Cell Transplantation, aka alloHSCT) at Johns Hopkins in Baltimore.

These last two weeks have been more dramatic twists, turns, and drops in that rollercoaster.

On October 5th, 2019, we thought that I might a pulled muscle or possibly a hernia, so we went to the local Kaiser-Permanente clinic.  After an ultrasound and description of symptoms, our oncologist thought it might be lymphadenitis.  I received a week’s worth of Augmentin to treat the supposed lymphadenitis.  As the pain increased and the swelling in my left inguinal thigh enlarged, we returned to Kaiser-Permanente several times for blood draws, biopsies, and CT scans.

On October 18th, 2019, which is the 120th day since my transplant, both the biopsies and CT scans confirmed that my cancer had returned and that it is being very aggressive with its rapid growth and progression.  In Hopkin’s own results: “Multiple enlarged lymphomas are seen in the left inguinal region including a heterogeneous nodal conglomerate measuring 6.8 x 6.3 x 5.9 cm.”

We spent from 1:20 AM on Friday, October 18th at Kaiser-Permanente in Tysons Corner, VA, until 9:40 PM at Johns Hopkins in Baltimore, MD.  I had a battery of blood draws, doppler ultrasounds, and CT scans performed over the course of the day.  We had multiple conversations between our oncologist at Kaiser-Permanente (Dr. Shalini Dogra) and our oncologist at Johns Hopkins (Dr. Francisco Javier Bolanos-Meade).  Both agreed that my cancer had returned, and due to my immunocompromised state and recent transplant, I could NOT undergo any further traditional chemotherapy or a second bone marrow transplant.

Our last remaining option is an experimental Mantle Cell Lymphoma T-Cell Immunotherapy trial being conducted out of the National Institutes for Health (NIH).  Kaiser-Permanente is reaching out to NIH in the hopes that I can be seen on Monday, October 21st, 2019.

I’m in considerable pain and swelling now, which is being managed by Kaiser-Permanente and my loving wife, Victoria.  I’m trying to use the least dosage necessary of morphine, oxycontin, and oxycodone over the course of each day so that I can remain awake and coherent, but not writhing in pain.  With all of the recent news and developments, our hearts are breaking and we need to narrow the scope of our vision to the immediate.  We can only think of the day ahead, not wanting to know what the next month or year may bring.

…

Both our hearts are heavy this morning. Yesterday was such a long (literally, 1 AM to 11 PM) and terrible (so much news) day. Victoria and I are slowly trying to absorb and digest everything from yesterday, and to narrow our focus to live only in the moment.

We cannot thank YOU, our family and friends, enough for your love, prayers, kindness, and support. This has been such an ordeal, our hearts are heavy, and sometimes we feel overwhelmed both in our tests of faith and our tests of endurance that we sorely need and are comforted by your presence.

Cancer, Mantle Cell Lymphoma (MCL)

Rapid Progression of Cancer

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Admitted to Kaiser-Permanente Tysons at 1:30 AM last night. They did CT scans, found that all my inguinal and abdominal lymphomas grew 8-10x in size over the past week. It’s rapid progression cancer. They’re increasing my pain meds. My oncology team is discussing what they can possibly do or what the next steps are. The news and progression are alarming.

Vicky and I are still trying to process and accept this latest blow.

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