Tag Archives: colitis

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.

Colon biopsies clear of infection, likely radiation proctitis

Radiation Proctitis (Biopsy)

My gastroenterologist who performed the sigmoidoscopy and biopsies just replied this evening:

Hi. Sorry for the delay but I was away last week and just returned. The biopsies did not show any infection and are suggestive of radiation proctitis. You can continue to use Lomotil to reduce the frequency of diarrhea. In addition, you can dissolve 2 tablets of Carafate in 20ml of warm water and administer that as an enema twice daily (you can get enema bottles at the pharmacy or buy fleet’s enema bottle and discard the contents and use the empty bottle). It may take up to 4 weeks to see a reduction in bleeding. Unfortunately, radiation proctitis can last for several months to a year and can also become chronic radiation proctitis in up to 30% of patients.

I have ordered the Carafate tablets for you which you can pick up at the Ashburn pharmacy. I have forwarded the results to Dr. Wollins as well. I will let Dr. Dogra know as well.

Sincerely,

Amy W. Lin, M.D.

Department of Gastroenterology and Liver Diseases
Mid-Atlantic Permanente Medical Group – Falls Church
201 North Washington Street
Falls Church, VA 22046

Trying to bring regularity to cancer journaling

Toshiro, Kiyomi, and Ken on a warm Winter afternoon

About half (or more) of the traffic that this website gets are family, friends, neighbors, or others I’ve met during my journey combating cancer these past two years.  Several different people now have told me I’m not consistent about updating my cancer journal, and others have told me it can be difficult to find among what else I post to this website.

In order to make it more readable and to follow along my journey, I cleaned up the header menu and added 🤕 My Cancer Journal so that readers can go directly to all of my content tagged with the “Cancer” category.  I hope to do a better job of posting my experiences and updates so that people interested can follow along.

Today surprised me.  With a break in the cold winter, I was enjoying the warmer afternoon in our back yard with our two Shetland Sheepdogs; Kiyomi and Toshiro.  While I was sitting out back, our neighbor called over and we talked for a bit.  I really cannot thank him, his wife, and his wonderful family for the kindness and support they’ve shown us over the years.  Victoria and I have lived in Westerley (Sterling, VA) since 2002.  Over these past couple decades, our neighbors on Burning Branch Terrace have been incredibly friendly, kind-hearted, and supportive of one another.  Their concern, advice, and support continues to surprise me and comfort Victoria and me.

To bring everyone up-to-date on my current health:
In November last year, I had a neutropenic fever and a blood-borne infection (pseudomonas). I was hospitalized at Virginia Hospital Center but continued to receive targeted radiation therapy while we were there.  Since my Mantle Cell Lymphoma (MCL) had returned after my bone marrow transplant (BMT) at Johns Hopkins, Vicky and I wanted to move quickly for us to be admitted to the Seattle Cancer Care Alliance for CAR-T clinical trials to address my lymphoma where the BMT did not.

Victoria and I returned from the Seattle Cancer Care Alliance (Seattle, WA) a couple weeks ago.  We did not undergo the CAR-T trial since mantle cell lymphoma is no longer present as metastasized in my bone marrow after undergoing radiation therapy.  I still have mantle cell lymphoma and lymphedema, but both can be treated via traditional chemotherapy.  I resumed R2 (Revlimid/Rituxan) upon our return from Seattle.  I’ve been receiving IV immunotherapy in the oncology infusion clinic every Friday.

The targeted radiation therapy on my left inguinal thigh and abdomen did a number on the sigmoidal loop (last third) of my colon.  I had to do a flexible sigmoidoscopy where Kaiser-Permanente determined the following:

Specimen(s) Received
A: Colonic Biopsy, Sigmoid 1. bx sigmoid ulcer R/O radiation colitis vs GVHD
B: Rectal Biopsy 2. bx
——————————————————-
Final Diagnosis
A. Colon, sigmoid, biopsy:
– Colonic mucosa with ulcer and chronic active inflammation, see Comment

B. Rectum, biopsy:
– Colonic mucosa with ulcer and chronic active inflammation, see Comment

Comment
The biopsy shows multiple fragments of inflamed granulation tissue and inflammatory exudates consistent with ulcer base. The adjacent colonic mucosa shows crypt architectural distortion, edema and increased inflammatory cells in the lamina propria. Given the clinical history of recent radiation, the findings may suggest radiation colitis. However, the biopsy is superficial, the typical histologic feature of radiation colitis, such as submucosal vascular changes are not seen. The other differential diagnosis includes infectious colitis. Immunostain and special stain will be performed to rule out fungal and viral infection, results to follow in addendum. The clinical history of allogenic bone marrow transplant is noted, but increased apoptotic bodies, the sine qua non of graft versus host disease (GVHD) are absent.

…and so we’re still waiting to see how Kaiser-Permanente Oncology and Gastroenterology wishes to treat my colitis.  I have my labs drawn several times each week as they monitor my  Complete Blood Count (CBC) with Differential.  White Blood Cell (WBC), Red Blood Cell (RBC), Hemacrit, Platelets, and Absolute Neutrophil Count (ANC) are the numbers they are most interested in… and they rise and fall quickly each week.  I’ve lost track now of how many irradiated whole blood and platelet transfusions I’ve received now, but I know it’s numbered in the dozens.

While we try to get a handle on my mantle cell lymphoma, lymphedema, and colitis, I began getting a severe cold and congestion last week.  Getting pneumonia as an immunocompromised cancer patient is a guaranteed long hospital stay.  I was doing my best to avoid hospitalization.  Thankfully my wife and our Kaiser internist agreed that with my history of Levaquin, it was likely not a bacterial cold or flu but a viral, and being congestive/respiratory, using an Advair Inhaler for the next 30 days would probably be the best way of clearing it.  I’m thankful to say that while I’m still phlegmy and congested, I’m able to breathe better and it has slowly been getting better.

I am still employed by Sophos, and I’m incredibly thankful to everyone (my team of co-workers, management, and human resources) for their kindness, compassion, and support during my ordeal.  I’ve been on Long Term Disability (LTD) since mid-November beginning with my hospitalization and Seattle cancer care.  I’m hoping once Kaiser-Permanente is able to manage my cancer care again with some regularity, I can return to working 32 hours/week from home.  Once the colitis treatment begins and my chemotherapy settles, I think this is reasonable.

And so it goes.  I’m hoping with the addition of 🤕 My Cancer Journal to the menu above and with my efforts to provide informational updates more regularly, people can follow my journey.  I truly cannot thank you enough for the kindness, support, interest, advice, and everything.  Truly, thank you!

Together as Family (Victoria, Toshiro, Ken, Kiyomi)

Gastroenterology as the next step on the “Cancer Tour”

To Kenneth Foreman (Viewed) , Victoria V Foreman (Not viewed)

I will have my staff reach out to schedule a flexible sigmoidoscopy under sedation (“twilight sleep”). Your oncologist recommended a platelet transfusion just prior to the procedure. My staff will work with your oncologist directly to coordinate this.

Completed by: ERIC R WOLLINS MD, January 20, 2020, 1:10 PM

NOTE: it’s been identified that I have radiation-induced colitis and possible proctitis (evidenced clearly by CT scan with contrast, bloody diarrhea, and daily abdominal cramping), so Seattle Cancer Care Alliance told Kaiser-Permanente it needs to be investigated further.

Sigmoidoscopy of Radiation Induced Proctitis
Flexible Sigmoidoscopy

Our Last Day in Seattle, Thanks to SCCA

Our Last Day at the Seattle Cancer Care Alliance (SCCA)

Our heartfelt thanks and gratitude to the incredible medical team at Seattle Cancer Care Alliance as they took care of me for this past month. We learned much about my Mantle Cell Lymphoma and Colitis. We’ll be continuing my care as traditional chemotherapy once we return to Kaiser-Permanente.

Today is our last visit to the clinic and our last day in Seattle. We’ll be flying back home to Virginia tomorrow.

Once home again on Wednesday evening, we have a busy remainder of this week:

On Thursday, I need to see a gastroenterologist about radiation-induced Colitis as identified by my last full-body CT scan, and evidenced by my persistent abdominal cramps with painful bathroom visits.  I’ll likely need a colonoscopy and its expected that I’ll probably be on antibiotics and Prednisone for the treatment of it.

On Friday, my traditional chemotherapy resumes.  We’ll be spending the day at Kaiser-Permanente in the Oncology Infusion clinic as I resume R2 (Rituxan/Revlimid) for the treatment of my Mantle Cell Lymphoma.  We’ll be following up to see if a Donor Leukocyte Infusion (DLI) is possible, if my original Bone Marrow Transplant (BMT) donor agrees to make additional blood donations.

The Seattle Cancer Care Alliance (SCCA) building in Seattle, WA
The Seattle Cancer Care Alliance (SCCA) building in Seattle, WA