Category Archives: Mantle Cell Lymphoma (MCL)

Cancer, Health, Health Barometer, Mantle Cell Lymphoma (MCL)

“Not with a bang but a whimper” (health update)

❝ Hey you! I hadn’t seen a health update in a while, and I really wanted to know how you were doing. ❞

It’s been a while since I last posted an update about my health or my ongoing adventures with cancer, remission, and lymphedema.  Between our societal exhaustion of the pandemic and my own personal fatigue of dealing with the after-effects of cancer, chemo, lymphoma, and lymphedema, blogging about my health wasn’t as high a priority for me.

I was surprised and very thankful to hear from a beloved and old friend yesterday. It was really nice catching up with her, and she asked about my latest health.  She reminded me it’s been a while since my last update, so it prompted me to post this update.  Rather than retype much of what I told her, I thought I’d copy much of my summary here.

I really can’t understate how surprised and thankful I was to hear from her.  She’s someone whose opinions, observations, and life experiences I greatly respect and admire.  It’s fascinating how our lives have paralleled each other.

• • •

While being told “you have cancer, it’s Stage 4, we need you to go to the hospital for IV infusion” is pretty dramatic and a singular event, recovery isn’t so dramatic or so singular.

I’m on my third remission, it’s the longest so far, but the effects of 3 years of chemo and an imperfect bone marrow transplant continue to linger. The lymphedema of my left leg is such that at any given time, my left leg is 2-3x the size and weight of my right leg. It means I get cellulitis far more often (2-3x each year), and I get hospitalized each time for sepsis accompanying the cellulitis.

In these past few weeks as I try to walk more, hike more, and get out more, it means I walk funny as I try to put more weight, stress, and maneuverability on my right leg. It also means that twisted my leg and loosened my ligaments in my right knee. I had two x-rays of my knee, thankful it doesn’t need surgery, but means I need to wear a soft brace while I try to exercise more to strengthen the muscles in my legs.

I ought to write it all down and post it, but it’s tedious and ongoing (feels never-ending sometimes).

I wish I could have gone to Defcon 30. I had several friends who went, told me about the exciting time they had, and sent pictures. I still would like to go to Burning Man sometime. I figure I’ll have an easier time at Burning Man than at Defcon since it’s easier to maintain personal space and take various hygiene precautions/wear.

Still somewhat immunocompromised, so I work from home full-time, I try to limit my socialization, and it’s pretty funny (not really) how quickly sick I get from time spent around others who think they aren’t sick, or “it’s just the sniffles, nothing really, I’m not contagious” and then I end up in the hospital for a couple of days for IV antibiotics (which is a true story, exactly what happened after attending the wake and funeral of Vicky’s Dad)

Humor, sometimes dark humor, certainly helps with coping. Especially around others, who either have misconceptions about what cancer is, what cancer is like, or how they see it/handle it in others.

People don’t alarm me any more with their reactions. I don’t answer the trolls anymore, but will answer those genuinely curious or dealing with similar issues. My first few outings to the movies or to the restaurant were frustrating or exhausting.

And yeah… the pandemic has been something else, especially with how some people deal with it… or don’t. Since it’ll definitely knock me down, out, or kill me, I avoid others who I suspect have covid.

Cancer, Mantle Cell Lymphoma (MCL)

Joys of Growing Older (lymphedema and bad knee)

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Lymphedema (secondary to Lymphoma) in one leg, bad knee in the other.

Long ago and far away (during my senior year of high school), I was climbing a 20-foot ladder to retrieve a pallet of paint from three-story warehouse.  While I was carrying gallons of paint down the ladder, I got my foot caught in a rung and twisted my right knee.  Despite fighting the claim, my employee recognized their fault and my injury, and I had my leg braced for part of the summer.  I didn’t tear but I did loosen the post cruciate ligament (PCL) of my right knee.

A couple years later, I seriously wondered if my right knee was going to keep me from passing Basic Military Training (BMT) at Lackland AFB in 1992.   Thankfully, the requirements for “running” a mile was a 12min/mile.  At 12 minutes, you could effectively JOG a mile and not have to RUN it.  So I did.  At just over 10 minutes, I took my mile at a very comfortable pace and still passed BMT.  My right knee was in considerable pain that week between daily exercises, hikes around Lackland in full battle dress uniforms (BDUs), and trying to haul my sorry ass a mile in under 12 minutes.

Fast forward 30 years, I have lymphedema in my left leg (secondary to Mantle Cell Lymphoma) and now I’m having sharp “grinding pains” in my right knee.  I’ve been woken up multiple times in sharp pain as it feels like bone-on-bone grinding in my right knee.  I’ll need to get my leg x-rayed next week.

It’s always something… isn’t it?

Cancer, Mantle Cell Lymphoma (MCL)

Another Stay in the Hospital

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Victoria & Ken at Virginia Hospital Center

I spent the last two days at Virginia Hospital Center after being admitted with a fever of 104℉ with chills, runny nose, and coughing.

With a temperature of 104℉, the doctors thought I had a viral infection rather than a bacterial infection. I was told that viral infections result in higher body temperatures.

They swabbed me twice for COVID, doing a PCR test each time, both were negative. They swabbed me for a panel of viruses, and it came back positive for HPIV.

Victoria and I never heard of Human Parainfluenza Viruses (HPIVs), but they’re common in children. Since I’m post-BMT and effectively have the immune system of a juvenile, I’m prone to childhood diseases.

I was able to go home yesterday afternoon, but I’m told to monitor it, be careful, and follow up with multiple tests for my WBC, ANC, and Platelets.

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, Health, Mantle Cell Lymphoma (MCL)

Doing My Best to Persist (UPDATED)

UPDATE 2: Thu Jun 17 2021 8:10 AM

Kaiser-Permanente is seriously concerned about the symptoms I’m presenting, especially in light of my history, recent numbers, and bloodwork.

They are holding a conference call between Oncology, Internal Medicine, and Infectious Diseases to discuss my history, symptoms, medication, and bloodwork, but I may need to go to Urgent Care or to be hospitalized today.  We’re currently trying to get nearby family/friends to watch Kiyomi, Toshiro, and Sachiko (our three Shelties) for us on VERY SHORT NOTICE.  We do not know how long I’ll be hospitalized, it could be hours/days/week or more.

UPDATE 1: Thu Jun 17 2021 6:30 AM

Meeting with Kaiser-Permanente to discuss Bloody Ulcerative Colitis

Acute Ulcerative Colitis (repeatedly bloody bowel movements)

Dr. Nguyen,

Getting periodic flares of my ulcerative colitis is nothing new. Since our time at Seattle Cancer Care Alliance in January 2020, I’ve typically been getting 1-2 flares a month (roughly every 8-11 days) lasting 2 days each.

Starting on Sunday, June 6th, I’ve had steady-and-persistent symptoms of acute ulcerative colitis for nearly 2 weeks straight now. It’s been a steady watery and bloody diarrhea with clear “tripe” in multiple bowel movements. I’ve had near-daily abdominal cramps which are sometimes straining me to my limits of tolerance. For the past week, I’ve been “leaking” watery diarrhea, requiring me to wash my clothes daily and to wear diapers.

It’s all the same signs and symptoms I presented when I was positive for Cytomegalovirus (CMV).

Could you please request a CMV test for me, or any other tests which may be causing this change in my bowel habits?

Could you please refill my Lomotil and Oxycodone prescriptions? I’ve been taking roughly 3 Lomotil every day (2 at onset, an additional 1 an hour or two later with the next watery bowel movement). I’ve been taking Oxycodone sparingly and as-needed for the abdominal cramps.

Thanks in advance for your time and advice!

Sincerely,

Ken & Victoria Foreman

Cancer, Mantle Cell Lymphoma (MCL)

Doing My Best To Persist

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“You never know how strong you are until being strong is the only choice you have.”
— Cayla Mills

On Tuesday, November 24th (the week of Thanksgiving 2020), I started running a sustained neutropenic fever of 100.6°F.  I was admitted to the emergency room at Reston Hospital Center and then transferred to the Progressive Care Unit (PCU, a “step-down unit from Intensive Care”) for the next three days.  They gave me IV fluids and heavy antibiotics for all three days, did a chest x-ray followed by a CT scan.  I was diagnosed with “walking pneumonia” and neutropenic fever.

I begged the hospital to discharge me into the care of my wife (a licensed and registered critical care nurse) so that I could spend the holidays at home.  I explained to them that this is now my THIRD THANKSGIVING SPENT IN THE HOSPITAL.  I was diagnosed with Stage 4 Mantle Cell Lymphoma in January of 2018.  Thanksgiving and Christmas of 2018, 2019, and now 2020 were all spent in the hospital… and I desperately wanted to go home and spend the holidays with my family instead.  Dr. Rao of Reston Hospital agreed, so I was able to go home, but remain on 10 days of Augmentin and Levaquin.

While my fever has subsided, the lymph nodes became more swollen as the week went on.  For the past two days, I’ve been in pain and had difficulty swallowing.  I can feel multiple lymph nodes in my neck, chest, and abdomen now.  They are all swollen, tender to the touch, and make me want to vomit if pressed.  I woke up in pain last night and emailed my internist and oncologist:

Dr. Dogra,

cc: Dr. Nguyen,

I’ve been ignoring pain in my neck this week suspecting that it was just my lymph nodes being sensitive after my recent bout with pneumonia and/or neutropenic fever in the hospital, but the pain is becoming pronounced enough that I can no longer ignore it. I am having difficulty swallowing, and it is tender enough to the touch that pressing upon my left side causes a wave of pain and an immediate desire to vomit.

I can now feel painful lumps in my neck and middle abdomen on the left side underneath my rib cage. Touching any of them causes me pain and nausea, pressing upon them creates an immediate desire to vomit. Swallowing liquids or food is causing me pain.

Please advise. I am currently taking Oxycodone to control the pain with Zofran as needed. This is scaring me. It’s behaving and feeling much like it did in February 2018 when I was first diagnosed with Stage 4 Mantle Cell Lymphoma.

Sincerely,
Ken Foreman
…

Swollen lymph nodes, swollen spleen, fatigue, nausea, pain.

So it could be:
1) Cytomegalovirus (CMV) respiratory infection
2) Recurrence of Mononucleosis

3) Mantle Cell Lymphoma (MCL)

As many know, my wife is a critical care nurse. She had me stick out my tongue and go “ahh” and saw that my throat is swollen with white bumps, making her wonder whether this is an infection (CMV or Mono) rather than Lymphoma.

We’re waiting to see what Dr. H.A. Nguyen (my internist) and Dr. Shalini Dogra (my oncologist) recommend next.

And so, we keep hoping, praying, and trying to stay strong together as a little family.
Cancer, Family, Home/Life, Mantle Cell Lymphoma (MCL)

Better Days, Better News

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Traveling to Washington, DC for my latest full-body PET/CT scan

Results of my latest PET/CT scan

So my Ulcerative Colitis, Splenomegaly, and Severe Neutropenia (immunocompromised) are persistent, but my Stage 4 Mantle Cell Lymphoma appears to be controlled/in-remission since this February.

Given their findings, I’m hoping to meet with Johns Hopkins and Kaiser-Permanente on October 2nd to be medically cleared to return to work full-time (shifting my maintenance chemo from Fridays to Saturdays) and getting a written statement that I remain with colitis, lymphedema (swollen left leg), splenomegaly, and an immunocompromised state.

None of these conditions prevent me from working full-time, but the severe neutropenia would limit/prevent my working in a shared/open-workspace office.

Cancer, Mantle Cell Lymphoma (MCL)

Another Friday, Another Chemo Session

Blood Draw during IV Chemo

For the past 26 months, I’ve been getting IV chemo either weekly or every few weeks. Since on my third remission, I am on fast-rate, high-dose IV chemo every 56 days (not quite every 2 months).

I can tolerate the IV chemo, but it causes my blood pressure to plummet and stay at 80/55, to get a sore throat and post-nasal drip, and to generally feel like “sh!t warmed over” for a day or two.

Ping-Chan Tsui (my Oncology nurse) is getting comfortable with me doing my own blood draws when necessary, and got a little concerned about my blood pressure and appearance yesterday… I was fine, just fatigued going on utterly exhausted.

I slept all day yesterday afternoon and last night, finally feeling semi-human again at 5:30 this morning.

IV Fluids and Antibiotics while Hospitalized

I have a private room each time I go to Kaiser or Hopkins now. My neutrophil and white blood cell counts are never getting any better, so I am ALWAYS neutropenic and lymphopenic.

This also means if you so much as cough on me or sneeze on me, I will spend the next week hospitalized getting IV antibiotics.

Cancer, Coronavirus, Family, Friends & Co-Workers, Home/Life, Mantle Cell Lymphoma (MCL)

Life Begins Anew (Again)

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Ken, Kiyomi, and Toshiro

As of today, I am legally and technically unemployed. I’m under NDA to my previous employer, and I’m receiving Disability until my next employer.

It’s kinda overwhelming. These past few years have been the wildest roller coaster of my life. I am truly going to miss the friends and co-workers I’ve made these past few years. I wish we could have done more together; I would have liked to see our project go further (with the plans we had for improving it).

Over the past few years, Victoria and I neglected our house while we focused on my health and our travels to support it. Now we need to literally “clean house” as we address each room and make everything useable once again.

With my health and job search, I need a separate office space from the one Vicky has. She has an office in our Guest Room while I have a wall of our Master Bedroom. Both were neglected and collected books, papers, dust, and cruft. Now I need to make mine clean, presentable, and professional again.

Since hiring managers, co-workers, and engineering teams assess your background as much as you, I need to clean up my office so that my background is as clean and professional as my desk and workspace is.

So these next few days, and likely next full week, will be very busy as I pick myself up, dust myself off, and try to get my life back in order again.

#cancer #career #coronavirus

Cancer, Cycling, Fitness, Mantle Cell Lymphoma (MCL)

Cycled the 90mi Length of Hadrian’s Wall

Cycled the 90-mile length of Hadrian’s Wall

Many thanks to My Virtual Mission & The Conqueror Event Series for both the Inca and now the Hadrian’s Wall virtual challenges.

I was diagnosed with Stage 4 Mantle Cell Lymphoma (a Non-Hodgkins Lymphoma) in January 2018. Over the past two years, I’ve undergone 4 different chemo protocols, radiation therapy, and a bone marrow transplant.

Using the Peloton Cycle for my daily rides and My Virtual Mission and The Conqueror to motivate me, I’ve ridden over 94 miles in the past couple months. Hadrian’s Wall was excellent motivation as I try to rebuild my strength, endurance, and stamina!

Reference:
https://www.myvirtualmission.com/missions/18817/hadrian%27s-wall-virtual-challenge

Cycled the 90-mile length of Hadrian’s Wall
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, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL)

Continuing to Fight and Beat the Odds

Preparing and Staying Protected

“ONE OF THESE DAYS, AN INFECTION IS GOING TO KILL YOU, KEN.”
— Francisco Javier Bolanos Meade, M.D., Johns Hopkins

It’s been over two years since I was diagnosed with Stage 4 Mantle Cell Lymphoma. This June will be the first anniversary of my Bone Marrow Transplant at Johns Hopkins Baltimore.

While I’ve beaten the odds that the National Institutes of Health (NIH) gave me last December, my immune system remains severely suppressed. Just in the past few months, I’ve been hospitalized twice for pneumonia and sepsis. It is thanks to Victoria that I am still here today… between my cancer and two recent bouts of septic shock, I doubt I would have been so fortunate or alive if left to my own devices.

So it’s becoming apparent that bone marrow graft is still straining to produce blood products, especially when getting knocked down with each infection or medical event I battle.

After discussing my situation with Victoria, Dr. Dogra (Kaiser), Dr. Nguyen (Kaiser), and Dr. Meade (Hopkins), I am going to need to wear my medical ID bracelet at all times and carry a medical precautions bag with a cloth N99 mask, two disposable N99 masks, Purell, SPF50 shirts and head coverings, and to be FAR MORE MINDFUL of the people and situations around me.

This is becoming my new reality… I need to be mindful, to be vigilant, to stay protected, and to know that my immune system is so weak that my next infection is deadly dangerous to me.

#cancer

Preparing and Staying Protected
Preparing and Staying Protected
Cancer, Coronavirus, Mantle Cell Lymphoma (MCL)

Week in the Hospital due to Pneumonia and Sepsis

A week in the hospital with Pneumonia and Sepsis
Thankful to be going home from Hospital

Last Tuesday (May 5th, 2020), I started running a high fever (103°F) and severe vomiting.  I was first admitted to Kaiser-Permanente in Tysons Corner, VA, then took an ambulance to Reston Hospital Center when they couldn’t get my blood pressure elevated higher than 70/38.  Virginia Hospital Center denied my admittance due to a high number of COVID-9 (Coronavirus) patients, and they couldn’t ensure my safety.

For the past week, I was pumped heavily full of IV antibiotics, antifungals, magnesium, potassium, and fluids.  I quickly gained 20 lbs of fluid retention and my lymphedema worsened in my legs and arms.  When I was discharged yesterday, I was shocked to see the scale.  I’ll need to walk more, ride the Peloton cycle more, and stretch more over the coming weeks and months to expel, reduce, or reabsorb this fluid weight.

I was very cautious and kept separated from all the Coronavirus patients at Reston Hospital Center, but it was made abundantly clear how very dangerous a respiratory infection and ventilator would be to my severely immunocompromised health.  The medical team made the implications of a DNR (Do Not Resuscitate) and what a respiratory infection would do to me while being so heavily compromised with neutropenia and lymphopenia.

So I need to be VERY careful when outside of the house and in social settings… now more than ever.  I’m thankful to be home again, but I need to be even more mindful and careful.

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

26th Month Anniversary of Cancer Survival

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February 4th, 2018 – First Round of IV Chemo for Stage 4 Mantle Cell Lymphoma

803 DAYS AGO
115 WEEKS AGO

26 MONTHS OF CHEMOTHERAPY AGO

Apparently, Kaiser-Permanente has been keeping track of my chemotherapy protocol, how many months it’s been since my first chemo, and told me today is the “26th Month Anniversary” since beginning chemo at Virginia Hospital Center on February 4th, 2018.

Today (17-Mar-2020) marks 26 months of chemotherapy since I was diagnosed with Stage 4 Mantle Cell Lymphoma. I’ve lost over 40 lbs and most of my body hair since this picture was taken, but I’m thankful to be with you here today.

IV Chemo at Kaiser-Permanente (Burke, VA)

Receiving the start of my 26th Month of IV Chemo while at Kaiser Permanente Burke Medical Center today.

The IV clinic felt surreal today, with every nurse gowned up and practicing extreme hygiene and distancing, all of the patients wearing N95/N99 masks at all times and practicing distancing. I wasn’t sure if it was a hospital or a scene from a Stanley Kubrick movie.

Another Day of Chemo at Kaiser-Permanente (Burke, VA)

I fall to my knees and thank God for Victoria being by my side and my constant companion these last two years. What an incredible journey this has been… and the journey continues!

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

Whither Rituxan Therapy, and Maintenance Chemo? [Part 1 of 2]

Victoria & Ken at Johns Hopkins (Baltimore, MD)

While we’re grateful for the good news that my most recent PET/CT scan was negative for active tumors, we’re a bit wary of immediately stopping chemotherapy and immunotherapy until Johns Hopkins and NIH weighs in with their recommendations.  Twice now, my cancer has recurred within 2-3 months of my remission, we’d rather not this be my third.

Dr. Dogra,

As you’re well aware, Ken’s mantle cell lymphoma has been particularly aggressive. Twice after remission, his cancer came back. First after the Nordic Protocol, it recurred around 2 months after treatment. Second after the bone marrow transplant, it recurred 2-3 months after transplant.

Given Ken’s disease progression & history, we wish to continue with the Rituxan treatment until speaking with Dr. Meade on March 19th. If you could please reschedule the Rituxan treatment every Friday as previously scheduled. We’d also want NIH’s recommendations on how we might decrease the possibility of further recurrence.

Previously, it was discussed that Rituxan Therapy as a maintenance chemo for three years would reduce the likelihood of recurrence. Has that changed? Could Ken remain on Rituxan until this has been discussed with Dr. Meade on the 19th?

Thanks,

Victoria & Ken Foreman

Cancer, Family, Home/Life, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL), Our Shetland Sheepdogs

Together as Family, with Cautious Joy (March 2020)

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Together as Family, with Cautious Joy (March 2020)

NOTE:  We’re together as a family as we’re “Celebrating with Cautious Joy” after my PET/CT scan this week showed no active cancerous tumors (mantle cell lymphoma).

Hopefully, this remission will last longer than my previous two. Unfortunately, with my aggressive cancer, remissions for me ended in relapse after two to three months. We’re meeting with Kaiser-Permanente and Johns Hopkins to discuss our next steps…

I was diagnosed with Stage 4 Mantle Cell Lymphoma in January of 2018.  It is now March of 2020.  This will now be my third remission from Mantle Cell Lymphoma since this arduous journey began.  With both of my previous remissions (after Maxi-dose R-CHOP/”Nordic Protocol” in early 2018 and after my Bone Marrow Transplant in June of 2019), my cancer returned between two to three months later.  With both relapses, our hopes and joys were crushed as I immediately began IV chemo, radiation, or was hospitalized with each.

It’s hard to be overjoyed or celebrate at the news of a negative PET/CT scan when you’ve had two relapses in two years in just over two months’ time each.  Vicky and I are “celebrating with cautious joy” but continuing to take it day-by-day, week-by-week, and month-by-month.  For each day, week, month, and [hopefully] year I remain in remission, we’ll give thanks to family, friends, our medical teams at Kaiser-Permanente, Johns Hopkins, the National Institutes of Health (NIH), and the Seattle Cancer Care Alliance (SCCA), and… of course to God for hearing our prayers and those of our family & friends!

I am still immunosuppressed/immunocompromised, but not currently neutropenic.  I will continue getting my bloodwork done weekly, and using my ANC (Absolute Neutrophil Count), RBC (Red Blood Cell count), WBC (White Blood Cell count), Hematocrit (oxygen-carrying capacity of blood), and Platelets (clotting factor) to determine how much I can get out of the house and how much social interaction I can have.  With the current Coronavirus epidemic spanning the world, I am severely at-risk and it would either hospitalize me or kill me.  I’m continuing to wear disposable N99 filtration masks or re-usable cloth N99 filtration masks (with disposable N99 paper filter inserts) to reduce my risk when outside of the house, in crowded places.  I also carry Purell, Lysol Spray, and gloves to either avoid contact or immediately sterilize my hands after contact.

At this point, our next steps are for me to have a bone marrow biopsy with Kaiser-Permanente to verify what the PET/CT scan reported.  I should have no indication of metastasis.  We’re also meeting with Johns Hopkins for my long-overdue six-month bone marrow transplant review, where I’ll undergo additional blood tests, they’ll be checking me for Graft vs. Host Disease (GvHD), and we’ll discuss why my blood products remain so low when it’s been nine (9) months since my bone marrow transplant.

In our last discussion with the Seattle Cancer Care Alliance (SCCA), their theories were:

  1. My bone marrow transplant “barely took”, and the reason why my ANC, RBC, WBC, Hematocrit, Platelets all remain low is because they are being produced by my bone marrow in small, finite amounts.  Blood cells of each type all have a short/set lifetime, die, and get replaced.  My low numbers and cyclical ups/downs are representative of a weakly-transplanted bone marrow graft and the natural lifecycles of blood products.
  2. My bone marrow transplant “is in better shape than ‘barely took'” but “there is something eating my blood products nearly as quick as my bone marrow can produce it.” SCCA recommended that both theories be investigated and researched further by Kaiser-Permanente in coordination with Johns Hopkins and NIH once we returned from Seattle in January 2020.

With the diagnosis and treatment of my radiation-induced colitis, it is not likely that colitis is “eating my blood products” as we may have first suspected.  In the past couple of months, my ANC has slowly-but-steadily gotten better with it rising over 1.0 (the threshold for IV chemo using Revlimid) just a few weeks ago.

So this is not exactly a cause for revelry and celebration just yet…  We’ll continue to meet with Kaiser-Permanente and Johns Hopkins over the next two weeks, with possible discussions or differential analysis by the National Institutes of Health (NIH) on what it means that my blood product numbers have been so low, and how to prepare or continue remission in light of a history of aggressive Mantle Cell Lymphoma that had two prior relapses within months.  In the past, both Johns Hopkins and NIH recommended three years of Rituxan therapy as a means of “maintenance chemotherapy” to reduce the likelihood of recurrence.  We’re going to ask why this isn’t being followed, recommended, or overlooked this time.

 

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

“Let the Fun Begin!” (Vaccinations Galore!)

2 Comments
Welcome to your first vaccination of SIX today! … with about THIRTY more to follow.

Andres @ 08:32 (yesterday)
greetings! how’s it going ?

Ken @ 11:52 (today)
When I got your message yesterday, I was bent over the toilet, crippled in pain. Pretty much summed up my morning yesterday. Colitis is wrecking me yesterday and today. Getting by with the help of Lomotil and Oxycodone by day, and Morphine by night.

All my numbers dropped a tad more, so back to transfusions and bone marrow stimulants. Kaiser and Johns Hopkins still intend to give six vaccinations tomorrow morning to restart my immunization history and system. I have every vaccination from birth to adulthood to catch up on, so effectively 16 months of vaccinations beginning tomorrow.

Never had the HPV (human papillomavirus) vaccination before. I was already in my 40’s when the vaccine was made public, so little need. Now that “I’ve been reborn”, I get to have the HPV vaccination so I don’t incidentally get it from others.

Andres @ 12:46 (today)
*nods * sorry about your pain

and your lowered numbers

good luck with the vaccinations!

Ken @ 12:48 (today)
No idea what to expect, but it made for an interesting conversation with my oncology doc. Previously, I had reactions to Yellow Fever and a couple other vaccinations as a kid (not all I could remember). I asked if I should expect the same beginning tomorrow. She told me “I have no idea. You don’t have the immune system you were born with. It’s all new. You may have no reactions. You have may all new reactions you never had.”

Comforting. 😒

I am expecting some reaction, if only the “under the weather” misery and discomfort one gets from some vaccinations as the immune system and body ramps up to fight it. I already asked for Tylenol and Oxycodone tomorrow. I may not be online much, or at all.