Tag Archives: Bone Marrow Transplant

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.

Cancer, Johns Hopkins - Sidney Kimmel Cancer Center

“May Cause Some GI Distress”

“All of the medications you’ll be taking post Bone Marrow Transplant may cause some GI distress.”

UNDERSTATEMENT: a single Imodium after six hours of diarrhea will cause me to be constipated for days. Cellcept (my immunosuppressant) causes frequent (near-constant) diarrhea. Anti-emetics (Zofran, Compazine, Ativan) cause constipation.

These wild swings between unrestrained diarrhea and days of constipation resulted in blood-streaked stool and screaming pain from my backside. So now I’m putting cream up in places I’d rather not and asking my oncology nurse for a steroid suppository.

In the midst of all this, I’d recommend carrying changes of clothes and adult diapers. NOTHING about this is pleasant.

I seriously thought I was going to pass out on the toilet from pain. This isn’t hyperbole or an exaggeration, Vicky was seriously concerned I was going to vagal from the screaming hemorrhoid pain and blood-streaked poop. 🤢

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

13 Days Later – “And Still I Persist…”

Day +13 since my Bone Marrow Transplant

No miracles yet, but not for lack of praying.

Fr. Patrick Besel is the local Roman Catholic priest assigned to Johns Hopkins.  While he’s a member of the Archdiocese of Baltimore, he’s not affiliated with any Church or Order, but assigned directly to Johns Hopkins at their request.  Conversations with him have always been very interesting, and always heart-warming.

Fr. Besel and I were talking about the “Rise of the Nones” last week.  For the United States supposedly being a Christian nation, far less than half attend Christian services with any regularity.  It’s become increasingly acceptable to self-identify as Agnostic or Atheist when we’re in the best of health and consider ourselves to be modern, rational people.

It’s odd then, that in times of our greatest fear, our greatest struggles, or our fear of own mortality that we still seek out people of faith.  Fr. Besel tells me that even people who identify as Agnostic or Atheist still ask to speak with him or still ask that he sit and pray with them when faced with a life-threatening procedure or the risk of their own mortality.

I asked him how he could adapt and feel in the face of visiting so many cancer patients, performing so many Anointing of the Sick, Blessings, and conversations.  He didn’t say much, but shrugged and gave me a beatific smile.  He’s been a chaplain for a long time at a number of hospitals.  When I tried looking him up in the Johns Hopkins Pastoral Care Directory, I couldn’t find an entry for him or his picture.  I did find his predecessor.  My heart of hearts tells me that chaplaincy in a cancer treatment center probably has a high burnout rate.

It’s been 13 days since my Bone Marrow Transplant.  My bloodwork and lab results continue to nadir, requiring me to receive two units of Platelets the day before.  I’ll probably need another unit or two tomorrow as well given my current trajectory.

Two close family friends have asked me to read Viktor Frankl’s Man’s Search for Meaning and practice visualization therapy.  It’s been a frustrating endeavour.  The logical and rational part of my mind screams “I can visualize rainbows shooting out of my ass, but that won’t make it true.”  It does make sense however that the subconscious mind and body listens to our mental well-being and outlook.  If I am of good-spirits, it makes sense that I will be healthier and better-equipped to deal with knocks to my health than being depressive.

And so it goes… I’m still here.  I still persist.  I pray that I can look back on these cancer entries with a beatific grin and the knowledge that “this too has passed.”

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

One Fewer Cancer Patient Today (He Did Not Go Home)

1 Comment
Surviving Cancer

“WEINBERG BUILDING, 5D, CODE BLUE”
https://www.ncbi.nlm.nih.gov/pubmed/3511986

“Among patients given syngeneic transplants, actuarial disease-free survival at 7 years is 20%. The major causes of death were relapse of leukemia and idiopathic interstitial pneumonia. Among allogeneic recipients, 9 (23%) are currently alive, and actuarial disease-free survival at 7 years is 11%.”

Yesterday afternoon we got to witness what happens what someone suffers complications from Bone Marrow Transplant. We have one fewer BMT patient among our number today, but he did not go home.

I was admitted at the same time as a young man diagnosed with acute myeloid leukemia (AML). Yesterday we were talking with his wife, and he had a severe reaction to two platelet transfusions and a severe reaction to Vancomycin. He looks really rough, and he was dismayed that he didn’t lose his hair after Cytoxan and Irradiation only to lose his hair in patches this week.

He left the question dangling as he stared at the short stubble on my head. I was quiet for a beat and replied “I never expected to keep my hair. I still don’t. The day that Cellcept or any other drug they give me causes hair loss, I’m prepared to shave it all off.”

Cancer is hell. Anyone who tells you that Bone Marrow Transplants are easy isn’t being very honest with you.

Bucket List, Cancer, Family

Preparing for the Long Road Ahead

Family Bible & Rosary of Victoria & Kenneth Foreman

In the coming month, I have multiple bone biopsies, full-body PET scans, numerous blood tests and CT scans, and the various tests (pulmonary, cardiology) in preparation for heavy chemotherapy and whole body radiation therapy.  While I am no stranger to chemotherapy, this will be a much higher dosage in combination with radiation as my oncology team tries to wipe out my cancer and immune system so I can receive a bone marrow transplant (BMT).

For the past year, I did several months of R-CHOP (also known as the Nordic Protocol) where I received heavy doses of chemotherapy via a mediport in my chest. Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, Prednisolone, and Cytarabine were all prescribed to me over 6 cycles from February 2018 through June 2018.

After 6 cycles of R-CHOP, I was found to be in remission after verification using two full-body PET scans.  I opted for three years of Rituxan (Rituximab) therapy as my maintenance chemo rather than undergoing a bone marrow transplant (BMT) since I thought it would be easier and less traumatic for me and my family.  Little did I know that my remission wouldn’t even last three months, with my cancer returning before the end of the third month.

Family Bible & Rosary of Victoria & Kenneth Foreman

So I was started on 560mg/day of Imbruvica followed by 440mg/day of Venclexta as my second-line of daily chemotherapy since my cancer was no longer responding to Rituximab.  The Imbruvica had little effect on me, about as benign and well-tolerated as Rituximab.

Venclexta was far harder on my body, with many of the same side-effects as what I experienced with R-CHOP earlier.  By January 2019, I would need to have my blood drawn every 3-4 days in order to monitor my white blood cells (WBC), platelets, and Neutrophils.  Almost once a week, I would need to stop my daily Venclexta and start daily Zarxio (bone marrow stimulant) to allow my WBC, platelets, and neutrophils to recover for 2-3 days before resuming Venclexta again.

And now I’m preparing for the massive amounts of chemotherapy and radiation so that I can receive a bone marrow transplant via a Hickman catheter while I receive my chemo prior using my chest mediport.  I’ll be staying at Johns Hopkins Baltimore with my wife for 2-3 months during the procedure and recovery.

Everything you see here with my recent activities in reading, technology, toys, and more are all preparation for my time ahead.  These are all things I wanted to do to keep my mind off of the ordeal my wife and I are experiencing, and to stay mentally engaged while struggling to overcome this cancer.