Tag Archives: Cancer

Cancer, Health, Home/Life, Our Shetland Sheepdogs

Thoughts on my Health and the Year 2023

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Morning Walkies with Toshiro and Sachiko

Morning Walkies with Toshiro and Sachiko

Morning Walkies with Toshiro and Sachiko

After a week-long stay at the hospital with a few days of septic delirium, a week of IV antibiotics, and a month of Cipro, this is a loud-and-pronounced call that I need to focus on my health and getting control over my leg lymphedema as best I can.

Despite my best efforts for walking 60-90mi each month with the pups, doing frequent showers and moisturizing, I still seem to be getting cellulitis and sepsis several times each year. My last echocardiogram shows that it’s taking a toll on my heart health as I repeatedly get pumped full of IV fluids and antibiotics.

So, my goal now is to be thorough and persistent with my physical therapy at Kaiser and Virginia Hospital Center, to do more frequent/longer walks and cycling, and to hopefully get my leg into a healthier long-term state.

Or, at the very least, to be able to enjoy long walks, hikes, and cycling again?

Today was an exhaustive visit, but one of the best visits I’ve had with Kaiser about my short-term health, long-term health, and long-term treatment:

  • Yes, I do have a slightly enlarged heart and decreased ejection fraction, but it’s due to pseudomonas and sepsis as a blood infection. Seeing increased heart size and changes to ejection fraction are common. They’re scheduling me for a transesophageal echocardiogram in 2-3 weeks to verify my recovery once the Cipro is over. They’ll also schedule me for a full panel of bloodwork to verify my bloodwork, recovery, and level of immunity/immunocompromised.
  • Yes, I do have Stage 3 Lymphedema of my left leg. It’s pronounced. They want to photograph it monthly, document it, and do more aggressive physical therapy to see if we can’t see some recovery, improvement in mobility, decreased neuropathy. I’m being referred to Virginia Hospital Center (VHC) for my lymphedema care.
  • They’re documenting that I have a severe reaction to a flea bite, not uncommon for my lymphoma, lymphedema, decreased immune response. Pseudomonas itself was likely acquired during frequent clinical visits. MRSA and Pseudomonas are concerns given my health and history.
  • They recommended a Bifenthrin Insecticide fogger for front yard and back to reduce mosquitoes and insects, fog yard every 2-3 weeks. Safe for both me and our dogs. They recommended spraying my pants and shirts with Permethrin and/or DEET, to wear long pants and shirts for all walks outdoor exposure due to severe reaction to flea bite.
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

Ongoing Joys and Checkups of Lymphedema

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Video Visit with Dr. Yoho (Kaiser-Permanente, Tysons, VA)

Dr. Yoho emphasizing that I need to exercise my lymphatic leg more, that I need to elevate it more, and that I really need to wear compression stocking as much as possible.

I’ve been neglecting and tolerating my swollen leg, especially with the high heat of mid-summer and the pain of taking long walks.

I ought to get more compression stockings, clean my leg and check for any cuts or changes, wear compression stockings and exercise it every day, and wash the compression stockings (wear clean stocking) each day.

Cancer, Health

Latest PET/CT with Contrast (3/4/22) and Follow-Up

Nurse preparing patient for CT scan test in hospital room

PET/CT with CONTRAST, taken 1/6/2021

IMPRESSION:
1. No evidence of FDG avid adenopathy.
2. Decreased focal FDG uptake at the junction of the descending and sigmoid colons when compared to prior. Of note colonoscopy results from 10/23/2020 demonstrated fragments of granulation tissue with ulcer, positive for CMV.
3. Improving right lower lobe pneumonia.

4. Splenomegaly.

PET/CT with CONTRAST, taken 3/4/2022

IMPRESSION:
1. No suspicious FDG avid lymphadenopathy. Unchanged splenomegaly with uptake below that of background liver. Deauville score of 1.
2. New focal radiotracer accumulation in the sigmoid colon with possible focal wall thickening. Finding is indeterminate in etiology, and consideration of colonoscopy should be obtained as clinically warranted. Of note, patient had a prior colonoscopy which demonstrated CMV colitis.

3. Increase of left lower extremity lymphedema.

FOLLOW-UP

1. Colonoscopy.
2. Physical Therapy for left lower extremity lymphedema.
Cancer, Health

Approaching the end of a very long road…

Ken Foreman at Johns Hopkins (Baltimore, MD)

❝ HELLO KEN, TOMORROW MARKS YOUR LAST DAY OF MAINTENANCE CHEMO…

So I’ll be clear? I’ll be in Remission? This is my third remission now, but also my longest. Will I be clear after this?

IT LOOKS LIKE IT, BUT I WON’T SAY JUST YET. YOU’LL HAVE A FULL-BODY PET/CT SCAN WITH CONTRAST IN TWO WEEKS. IF IT’S CLEAR, THEN WE’LL DECLARE YOU CLEARED.

So what is my long-term prognosis? Am I now cancer-free? Will I never need to worry about cancer again?

THERE’S THE RUB… NO, WE DON’T KNOW… you had Stage 4 Mantle Cell Lymphoma. It’s nearly undetectable until it’s Stage 4 (Metastasized), almost all Lymphomas are. You’re clear now, but you’ll likely be immunocompromised with ups and downs for the rest of your life, and you’ll always have Lymphedema. We don’t know and will never know if you’ll get Lymphoma again, and won’t detect it until you do. You’re clear now, enjoy it. Do something. Celebrate.

I recommend you see a Hematologist and Immunologist for the immunocompromised health, and that you see undergo Outpatient physical therapy at a Lymphedema Clinic for your leg.

See you again in two weeks. ❞

Ken Foreman at Johns Hopkins

AFTERWORD:

It was an odd and heartfelt conversation with Kaiser this morning. I feel like a massive weight has been taken off my chest, but still kinda angry that I can’t go out and enjoy dinner at a restaurant or sit in a movie theatre to enjoy the big screen.

I have my health and my life, but I’m going to need to be much more careful and mindful than most people blithely going through their lives without concern for the health of others. 

Both my wife and the doctor could feel I was both happy and hurt by today’s news. I really want to eat out again, to watch movies again, to interact with people again. I have my health and my life, and I’m thankful, but I still need to be much more careful.

REMINDED THAT SUCH THOUGHTS ARE PETTY & SELFISH:

I understand, and I know I’m selfish to think such things like I WANT, I WANT when so many other cancer patients lose their battles. I lost two good friends in these last two years. Both lost their battles to cancer, and yet I’m still here. I wasn’t able to attend either of their funerals, but I was given a second chance.

I need to be grateful for this second chance and to make the most of it. I need to enjoy what I can, remember all that I’ve been through, and be overwhelmingly thankful for the support of family & friends these past few years.

But I still miss a good steak, a good burger, a good pint of beer, and a movie up on the big screen in a darkened theatre.

I’m going to need to find solace in these same things, but at home, together with family, grateful that I’m still here and still alive.

Cancer

Lest I Forget How 2022 Began

ICU Stay at Reston Hospital (Reston, VA)

ICU Stay at Reston Hospital (Reston, VA)

LEST I FORGET HOW 2022 BEGAN

Ambulance ride, hospitalization, and ICU from December 28th, 2021 until January 3rd, 2022. Admitted for cellulitis of left leg, septic shock (pseudomonas aeruginosa bacterial infection), high heart rate and low blood pressure, sinus-tachycardia.

1) Be thankful every day for good health and being at home surrounded by loved ones rather than hospitalized surrounded by medical.

2) Try to avoid further health issues in 2022.

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, 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, 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, Family, Home/Life

Burning Down the House

Charles Papert, Burning Down the 100yo Farmhouse (Washington State Veterans Cemetery)
When we are frustrated with ourselves, or with each other…
When we are angry with ourselves, or with our neighbor…
We don’t go burning down the house, no matter how immediately gratifying it may be.
 
Thomas Neal Foreman would never be my first choice for a role model, although he continues to shape my decisions to this day. If stories like “The Shack” and “Five People You Meet in Heaven” are true, I am certain that my father and I will meet again to resolve our unreconciled differences.
 
Kenneth Balogh Foreman would never be my first choice for a role model for others. I was the oldest of three sons, made more than my share of mistakes, was the loner and black sheep of my family. I attended college for two years, joined the US Air Force, tried to do the best I could with my own resources over the decades since. I did wrong by others, I did wrong by myself, and tried in various ways to set things right or atone for my mistakes.
 
A little over two years ago, I broke. I shattered. I got shitty news. Pretty much the shittiest news a person could get. My internal medicine doctor called us at home on a Sunday afternoon to apologize for the news he was about to give, and then told my wife and I that I have cancer.
 
The last two years have been the craziest roller coaster you could ever ride. Imagine doing loop-de-loops and hairpin turns until your hair fell out, you puked out your guts, and you shit yourself… now ride it for another year or two. Cancer and chemotherapy are kinda like that.
 
But for all my brokenness, the world around me was sane and fixed. The world around me was steadfast. I could grab hold of my family, our friends, our medical team, and know that the world was in a fixed position and I was the one who was spinning out of control.
 
And now, we all are the ones who are broken. It is not just me spinning looking for my magnetic north and hoping to settle there, we are all looking to stop spinning.
 
And this is weird, and this is bizarre, and this is heart-wrenching and heart-breaking. Who do you turn to for help when the helpers need help?
 
I don’t have an answer for this.
Cancer, Coronavirus

Watching People Overstress and Snap

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Our elderly, our sick, and our parts of society we neglect

Having Stage 4 Mantle Cell Lymphoma in the middle of a sane and functioning society makes me the broken one. My health is critical, and I wouldn’t make it if not for my dependence on others and the medical system.

Being immunocompromised in the middle of an irrational and dysfunctional society makes each of us broken. When I am in need, and someone snaps at me, is it because of my neediness or because of their frustration and anxiety at being in a terrible and abnormal situation.

I read in several comments and tweets yesterday that the economic and social stresses are too great, and perhaps the elderly and immunocompromised should die for the greater good of the society. I was appalled at each, but I understand where each is coming from. From their perspective, they are young, healthy, and do not fear the coronavirus. Death is something that happens to other people; people they don’t care about.

Our society and our infrastructure were designed only for a best-case scenario where all days are sunny, things would last forever, and no would need to care for or maintain anything. This pandemic is showing just how frail our systems and society really are. This is what happens when not all days are sunny, and what happens when you don’t take care or think about the capacity of your medical system.

And the saddest thing is, we probably won’t learn anything from it. Your health, my health, our health, should NOT be a profit-making endeavour. If it is not profit, then it is a non-profit. Non-profit agencies and corporations are dependent on society to make them work, which many people mistakenly call “socialism” without the foggiest clue of what that word means or the necessity of social contracts in order to make shared infrastructure work.

We are victims of our own hubris and desire to get the most we can for the cheapest while the few profit from our desire and scarcity of supply to our demand.

I don’t know what to say to this. I feel terrible and overwhelmed being a very broken person in the midst of a broken society where the young, the stupid, the uneducated, and the foolish want me dead so that they are not inconvenienced and their frail social ecosystem can continue rolling in entertainment, selfish/singular happiness, and financial well-being…. even if it comes at the cost of others’ lives.

#canceer #coronavirus

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, 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, Health Barometer, Mantle Cell Lymphoma (MCL)

My Current Status (Fri, 7-Feb-2020) and Long-Term Prognosis

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Thankfully, I’m video-conferencing more from home to meet with my primary care physician (Dr. H.A. Nguyen) to discuss my current health, various issues (cold, congestion, nasal drip, sinus, diarrhea), and to avoid going into his office unnecessarily and being exposed to others during a very active cold & flu season.

Video Conferencing with Dr. H.A. Nguyen

Every Friday, I’m undergoing my traditional immunotherapy and chemotherapy protocols to keep my mantle cell lymphoma diminished while we monitor and research the next steps…

IV Chemotherapy every Friday

On Friday, February 7th, 2020, we met with Dr. Shalini Dogra, my oncologist for Kaiser-Permanente in Tysons Corner, VA.  Vicky and I were discussing my cancer and health issues over the past few months, our current issues, and asking where do we go from here?

CURRENT STATUS:

  • Diagnosed with Stage 4 Mantle Cell Lymphoma (Code C83.18  MANTLE CELL LYMPHOMA, MULTIPLE SITES LN).  Being treated using the R2 (Revlimid/Rituxan) protocol
  • Diagnosed with lymphedema (edema, swelling of the left leg) which will take time and exercise to recede to normal size.  May be treated using Lasik, but treatment would cause many other problems and side-effects given my history and current medications.
  • Diagnosed with radiation-induced proctitis (colitis) in the sigmoid loop of the lower colon.  Being treated using Carafate enemas to reduce bleeding, Lomotil to reduce diarrhea, Oxycodone to reduce severe abdominal cramps.
  • Diagnosed with viral cold or flu of the head and upper chest.  Being treated using an Advair Inhaler twice/day, Zyrtec in the morning, Benedryl at night.
  • Diagnosed with neutropenia and immunosuppression.  Continuing to monitor, receiving blood product transfusions when critically low, receiving Zarxio as needed to stimulate bone marrow production.

NEAR-TERM TREATMENT:

  • My entire immune system has been reset and needs to undergo a complete vaccination history from birth to adulthood.  Influenza vaccine was received in October 2019.  Childhood (6mo age) vaccinations now required once my neutrophil count (immune system) supports introduction of dead or live viruses.  Will need to monitor neutrophils weekly and receive vaccinations as necessary for next 16 months.
  • Johns Hopkins and Kaiser-Permanente would like to perform a full-body PET scan (identify existing cancers, tumors, any new ones) and a bone biopsy.  Johns Hopkins would like to perform DNA and Blood Chimerism analysis to see how much of my immune system is original and how much is from my donor.  The last chimerism analysis (3mo post-BMT) was 100% Donor.
  • Seattle Cancer Care Alliance (SCCA) recommended and Kaiser-Permanente agreed that my mantle cell lymphoma is responsive to targeted radiation therapy and R2 (Revlimid/Rituxan) chemotherapy.  I am to undergo both until the cancer is eliminated, maintained, or progresses (and requires further intervention by NIH and Seattle Cancer Care).

LONG-TERM TREATMENT:

  • My prognosis for the success of CAR-T therapy was 10-15% given its history with mantle cell lymphoma patients.  Kaiser is impressed that it was unnecessary and that lymphoma reduced due to targeted radiation therapy and Revlimid/Rituxan chemotherapy.
  • I am to undergo R2 (Revlimid/Rituxan) as weekly IV and daily oral for the foreseeable future.  Until the cancer is in remission or progresses, this is how I am to be maintained.
  • Targeted radiation therapy has been proven highly-effective given large inguinal clusters in October-November 2019.  I will undergo further radiation to target aggressive clusters if necessary.
  • My lymphedema may take many more months or year(s) to resolve.  Elevate left leg and exercise as much as possible.
  • My proctitis/colitis is being treated via Carafate enemas for bleeding, Lomotil for diarrhea, Oxycodone for pain, but 30% likelihood it may become chronic.
  • Kaiser-Permanente recommends no changes to treatment, medication, long-term disability, or status until March 31st, 2020.  Kaiser-Permanente would like to base all further recommendations and prognosis pending near-term PET scan, bone biopsies, and responsiveness to Revlimid/Rituxan.

 

Cancer, Mantle Cell Lymphoma (MCL)

“A Buck Fifty, Soaking Wet”

Last days of 2019 before Seattle

Probably the lowest number I’ve seen on a doctor’s scale in a couple decades. It has me wondering how much more weight loss I can endure while still remaining “healthy?”

Visiting Dr. Nguyen today was bittersweet. He suggested I take Zoloft as a stronger anti-depressant to the Trazadone and Ativan I was taking. I voiced my concerns that I am worried I’m “making a one-way trip, and that I hope to see him again.”

We both got a little choked up. He told me he hopes to see me upon our return from Seattle.

#cancer

Cancer, Mantle Cell Lymphoma (MCL)

“Cancer Diet” down to 161.8 lbs

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Hanging In There

After this second recurrence of Stage 4 Mantle Cell Lymphoma, my weight is down to 161.8 lbs as of this morning.

Thankfully, the last few weeks of targeted radiation therapy and daily chemotherapy have lessened my lymphedema. My left leg is still very swollen, but at least I’m mobile now without being in pain. Walking much more than a few blocks or 3 flights of stairs is still enough to tire me out and cause me pain.

I’m getting blood draws every 3 days to monitor my ANC, WBC, Platelets, and CBC Differential. I’m still highly immunocompromised, so I’ll need to wear the N95 filter for the entire day-of-travel and medical flight to Seattle in a couple of weeks.

Weight
Body Fat, Body Water
BMI
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.

38.9294585-77.2244968
Cancer, Family, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL)

Another Fork in the Road

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Ken & Victoria Foreman, driving to Johns Hopkins (Baltimore, MD)

As I discussed earlier, we’ve been offered to participate in a clinical trial at Johns Hopkins for an experimental drug.  The clinical trial is actually Idelalisib Post Allogeneic Hematopoietic Stem Cell Transplant (HSCT) in B Cell Derived Malignancies.

It’s a Phase I Human Safety Trial (Dosage and Safety) to study to evaluate the safety of idelalisib as post-transplantation maintenance in patients with B cell hematologic malignancies undergoing an allogeneic hematopoietic stem cell transplant (HSCT). Safety will be evaluated through the assessment of cytopenias, effect on donor chimerism, effect on the incidence and severity of acute graft versus host disease, and gastrointestinal tolerance.

Currently, to improve overall survival, the focus of the BMT program at JHH the introduction of anti-neoplastic therapy post transplantation: where the allo BMT serves as a platform to allowing a new intolerant immune system to interact with the post allo BMT intervention.

The importance of post BMT therapy has been made evident with tyrosine kinase inhibition (TKI) in Philadelphia chromosome positive acute lymphocytic leukemia (ALL) and chronic myeloid leukemia(CML), where patients who had disease progression while on TKI therapy pre-allo BMT enjoy marked improvement in overall survival when TKI is part of a maintenance program; the use of DNA hypomethylation agents after allo BMT for relapsed myeloid malignances; or the use of rituximab after allo BMT in follicular lymphoma.

Idelalisib, an orally-administered, selective inhibitor of Phosphoinositide 3 kinase (PI3K), is extremely effective in inducing partial responses to complete responses in many B-cell derived malignancies and should be studied in the post alloHSCT setting. Johns Hopkins Hospital has one of the world’s largest experiences with alloHSCT. This study proposes a double blinded randomized phase I placebo trial where all patients who have undergone alloHSCT for a B-cell derived hematologic malignancy be offered either idelalisib 100mg or placebo twice daily for 180 days starting approximately 90 days after their HSCT.

Due to the Phase I (Dosage and Human Safety) nature of the trial, Victoria and I are hesitant to proceed with this study.  We’ve been through 16 months of chemotherapy, 4 different chemotherapy & immunotherapy protocols, and now the Bone Marrow Transplant.  We’re a good hour-and-a-half to two hours away from Baltimore between the distance and traffic.  If and when issues arise during the clinical trial, we’d need to go to Johns Hopkins Baltimore for diagnosis and possible hospitalization.  I truly cannot see us enduring more of this, especially for such an immature trial of an experimental drug that was highly toxic with numerous severe (and fatal) side-effects during it’s earlier trials.

Cancer, Friends & Co-Workers

Requiescat In Pace, Scott.

Comcast Xfinity Home (Reston, VA)
In Memory of Scott David Anderson [pictured above, furthest right]
December 05, 1961 – August 28, 2019

I am thankful for the six years I worked at Comcast​, and especially thankful for having worked with Nicholas Kaiho​ and Scott Anderson​.

Scott was a devoted friend, a diligent co-worker, and devoutly faithful. If my own experience with Stage 4 Cancer these last two years has taught me anything, it is that life is not fair and we should not expect fairness in our lifetimes. It is better that we live well, that we try our best, and that we live our lives so that others will remember us for our humanity and not our failings.

Scott was a good man, an accomplished co-worker, and a kindred spirit in this journey. Victoria​ and I rejoice for having known Scott and Mitzie​, and our hearts break for his passing. He will be sorely missed.

Requiescat In Pace, Scott.

Scott David Anderson, 57, of Des Moines, Iowa, lost his battle to cancer at the comfort of his own home surrounded by his loving family on August 28, 2019.

Scott is survived by his wife, Mitzie, of 35 years, daughters Erika (Anderson) Bohon and Amanda Anderson, grandchild Caroline Bohon, brother Tom Anderson, sisters Janet (Anderson) Jansen and Carol (Anderson) Crum, and many loving nieces, nephews and extended family.  Scott was a very devoted and loving husband, father, grandfather, and friend to everyone.

Scott served in the United States Air Force from July 1980 through March 1988.  He worked as a Computer Engineer for Sonatype for the past two years. 

Scott loved sports, especially baseball and college football.  His favorite teams were the Washington Nationals and the Iowa Hawkeyes.  He enjoyed spending his free time watching sports on TV and also enjoyed movies, biking, gardening, and reading.

He was a leader at his church, Emmanuel Baptist in Manassas, Virginia where he led the Awana Ministry and was involved in children’s ministry for 25 years.

He was preceded in death by his parents, Raymond and Madelyn, his brother, Douglas Anderson, and his niece Cindy Anderson.

Visitations will be held on Monday, September 9th, 2019, 10:30am-12:00pm at Emmanuel Baptist Church, 8006 Centreville Rd, Manassas, VA 20111.  A Celebration of Life Service will follow from 12:00 to 1:00pm officiated by Pastor Tim Ma.  Scott will be laid to rest at the Quantico National Cemetery in Triangle, Virginia.  The family has respectfully asked only immediate family at burial site. 

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

Johns Hopkins’ Analogy of Cancer to Dandelions

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Johns Hopkins’ Analogy of Cancer to Dandelions
After meeting with the Clinical Director of Oncology, Victoria and I have more to consider and digest. Last Thursday morning was an overwhelming amount of studies, statistics, trial protocols, and mortality rates.
 
In the words of Dr. Douglas Goldstone, chemotherapy and immunotherapy are like using a lawnmower or pulling a dandelion. Both remove what is above ground and visible, but it’s unknown whether any root remains. As long as root remains, Lymphoma stem cells remain, and the cancer will likely return.
 
With 2019 technology, medical professionals are unable to tell if any Mantle Cell Lymphoma stem cells remain after chemo and immunotherapy. PET/CT scans will only show cancerous tumors, not the microscopic stem cells which led to their formation.
 
Johns Hopkins has a 60-70% success rate with bone marrow transplants. The purpose of a bone marrow transplant is so the donor’s bone marrow blood product (T cells) recognize the Lymphoma stem cells as a virus and eliminate it. Unfortunately, it may take days to months before this recognition happens, it may not be successful, and it may trigger Graft vs Host Disease (GVHD).
 
With my health and success so far, Johns Hopkins wants to put me on a double-blind clinical trial for an experimental drug that is intended to aid in the recognition of cancer cells as foreign bodies to be eliminated by T-cells. Unfortunately, this experimental drug also increases the likelihood and risk of Graft vs Host Disease, so I will need to be closely monitored if I opt to join this study.
 
So far they have 16 patients on this study, they have a goal of 80. Mortality from Graft vs Host Disease for my age is around 3%. Between the effects, potential, and risk, Vicky and I had a lot to review and digest. If agreed to, it would begin in a month, and last for 6 months or so.