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.
“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.
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.
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!
In response to our earlier email about my continued IV Rituxan therapy until we meet with Johns Hopkins to discuss my PET/CT scan results, cancer history, and long term prognosis, we got the following emails from Kaiser-Permanente:
Hi Ken and Vicky,
I made an appointment for Ken on Friday 3/13 at 9:00 am for Rituxan. Unfortunately, the 8:00 am appt is taken now, but if we get a cancellation I’ll switch the appt to 8:00 am if you would like. See you soon,
Please call Oncology or email your Physician for any questions or concerns.
Suzanne Moore RN BSN OCN Oncology Dept Tysons’ Corner Medical Center
Yes… I had messaged the Oncology staff that he can continue on Rituxan until his appointment at JHU if he wants. We can see what they say about Rituxan.
If he is to continue Rituxan maintenance, the protocol would not be weekly. I believe it’s every other month.
I am just worried about the decreased lymphocytes with Rituxan and his risk for viral infections.
He does not qualify for the trial/consultation at NIH because of the recent scan not showing any lymphoma activity.
The weekly or monthly Rituxan was to have been in the setting of active lymphoma being treated with Revlimid and Rituxan.
Based on the recent scan, I did not feel he needs weekly Rituxan.
In wake of all this viral outbreak, I want to make sure we are not weakening his immune system with continued Rituxan.
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?
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:
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.
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.
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.
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.
These last two weeks have been more dramatic twists, turns, and drops in that rollercoaster.
On October 5th, 2019, we thought that I might a pulled muscle or possibly a hernia, so we went to the local Kaiser-Permanente clinic. After an ultrasound and description of symptoms, our oncologist thought it might be lymphadenitis. I received a week’s worth of Augmentin to treat the supposed lymphadenitis. As the pain increased and the swelling in my left inguinal thigh enlarged, we returned to Kaiser-Permanente several times for blood draws, biopsies, and CT scans.
On October 18th, 2019, which is the 120th day since my transplant, both the biopsies and CT scans confirmed that my cancer had returned and that it is being very aggressive with its rapid growth and progression. In Hopkin’s own results: “Multiple enlarged lymphomas are seen in the left inguinal region including a heterogeneous nodal conglomerate measuring 6.8 x 6.3 x 5.9 cm.”
We spent from 1:20 AM on Friday, October 18th at Kaiser-Permanente in Tysons Corner, VA, until 9:40 PM at Johns Hopkins in Baltimore, MD. I had a battery of blood draws, doppler ultrasounds, and CT scans performed over the course of the day. We had multiple conversations between our oncologist at Kaiser-Permanente (Dr. Shalini Dogra) and our oncologist at Johns Hopkins (Dr. Francisco Javier Bolanos-Meade). Both agreed that my cancer had returned, and due to my immunocompromised state and recent transplant, I could NOT undergo any further traditional chemotherapy or a second bone marrow transplant.
Our last remaining option is an experimental Mantle Cell Lymphoma T-Cell Immunotherapy trial being conducted out of the National Institutes for Health (NIH). Kaiser-Permanente is reaching out to NIH in the hopes that I can be seen on Monday, October 21st, 2019.
I’m in considerable pain and swelling now, which is being managed by Kaiser-Permanente and my loving wife, Victoria. I’m trying to use the least dosage necessary of morphine, oxycontin, and oxycodone over the course of each day so that I can remain awake and coherent, but not writhing in pain. With all of the recent news and developments, our hearts are breaking and we need to narrow the scope of our vision to the immediate. We can only think of the day ahead, not wanting to know what the next month or year may bring.
…
Both our hearts are heavy this morning. Yesterday was such a long (literally, 1 AM to 11 PM) and terrible (so much news) day. Victoria and I are slowly trying to absorb and digest everything from yesterday, and to narrow our focus to live only in the moment.
We cannot thank YOU, our family and friends, enough for your love, prayers, kindness, and support. This has been such an ordeal, our hearts are heavy, and sometimes we feel overwhelmed both in our tests of faith and our tests of endurance that we sorely need and are comforted by your presence.
Inguinal Lymphadenitis – Ken Foreman, October 6th, 2019
From: ken.foreman@gmail.com
Date: 10/6/2019
To: F Javier Bolanos Meade, Viki Anders, RN, MSN, CRNP
Cc: Victoria Foreman, Ken Foreman
Subject: Update on Pain in Lower Left Inguinal Area/Thigh.
Dr. Meade,
Viki,
The pain in my lower left groin and left thigh became concerning enough that we went to Kaiser-Permanente in Tysons Corner, VA, on Saturday, October 5th. Since the Ultrasound was unavailable, Kaiser performed an X-ray of my pelvic region, left groin, and left thigh. They determined there to be no bone-related issues, so suspected likely mild hernia based on the presentation of symptoms. They scheduled me for an Ultrasound on Monday and a Medical Appointment on Tuesday.
Overnight and this morning, the pain became excruciating. I began getting chills, nausea, and the desire to vomit. We returned to Kaiser-Permanente in Tysons Corner, VA, and showed that the swelling in my upper left thigh had become more pronounced and tender to the touch.
Kaiser-Permanente drew blood for immediate blood tests and scheduled me for an Ultrasound ASAP. The technician did an ultrasound of inner left thigh, lower groin, and then my inner right thigh for comparison and baseline. Kaiser-Permanente noticed a cluster of swollen lymph nodes, determined it to be Lymphadenitis, and prescribed Augmentin 875-175mg twice a day for the next week. I have a follow-up blood test and appointment with my primary care physician on Wednesday, October 9th.
My wife (Victoria) and I wanted to keep you abreast of my developments. We’re told that Lymphadenitis will likely not result in GVHD, but they’re thankful it was caught early and that my Augmentin treatment has begun.
Please let us know if you have any recommendations or concerns about my care.
Victoria and I would especially like to thank Dr. Francisco Javier Bolanos-Meade at Johns Hopkins Medicine for his compassionate care and oversight this past year.
It’s been 105 days since my Bone Marrow Transplant at Johns Hopkins. Dr. Bolanos-Meade said “I’ve been positively boring as a patient, with no excitement to concern [him]. Keep it up!”
Vicky and I have so much to be thankful for. Thank God and thank Dr. Bolanos-Meade! 💕🙏🏻
My most notable symptoms were Hypertriglyceridemiaafter my use of Sirolimusas an immunosuppressant, which Johns Hopkins has since switched to Tacrolimus. Unfortunately, Tacrolimus has its own list of side effects, notably Tacrolimus Toxicity resulting in tremors, neuralgia (shocking pains), and peripheral neuropathy (loss of feeling in fingers and extremities).
For me, all of my medications and post-procedure symptoms has resulted in some short-term memory loss, changes in vision and vision-correction prescription, atypical weight gain, and dry/scaly skin.
Today I was told that I should wait 6 months before getting my vision checked, but that changes in vision are common. The oncologist was a bit concerned that my weight went from 167lbs to 184lbs in the last two months, so I’ve been asked to watch my diet and exercise (more proteins, much fewer carbs & sugars, more exercise), and to apply skin lotion twice a day over my entire body.
When I asked if I may return to work, so long as I’m working from home and not exposing myself unnecessarily to others, I was told that it’s a little outside-the-norm for 3 months, but he’s excited I’m doing so well. Johns Hopkins tells me they’ll document a written work-release detailing my work restrictions and liabilities. I’m hoping to get that document to my employer’s human resources and to my disability insurance company as quickly as possible.
And so it goes… some good news today. I’m hoping to become healthier, for my recovery to progress without complications, and I look forward to being able to work again, even if it is in a somewhat limited capacity until I’m fully vaccinated with a healthy immune system.
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.
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.
It is with heartfelt gratitude that Victoria and I thank Brad and Christina for watching over and reuniting our little family. Our hearts are overjoyed and our family is once again complete. 💕🐾
After being at Johns Hopkins (Baltimore, MD) from June 13th, 2019, until August 17th, 2019, Victoria and I returned home after my Bone Marrow Transplant.
With love and gratitude to Chris & Brad Lafferty, we were reunited as family on Monday, August 19th, 2019 after being apart for several months. Our hearts were overjoyed as our little family was made once-again whole.
Homecoming!Homecoming!Homecoming!Homecoming!Homecoming!We love these two little ones!
Ken Foreman at Hackerman-Patz (Johns Hopkins, Baltimore, MD)
Vicky and I are preparing for our farewells from Johns Hopkins after nearly 3 months as a patient. We checked in on June 13th, 2019. I had my bone marrow transplant on Thursday, June 20th, 2019. It’s now Thursday, August 15th, as I type this. We’re thankful we had the opportunity to meet the wonderful Ms. Leslie Millenson while we were here.
We had to bring enough supplies for what we knew would be a 2-3 month stay, so we brought plenty of clothes, cleaning supplies, and entertainment (our Kindles, iPads, and laptops). With the end now in sight, we’re preparing and packing everything up for the long drive home. We still need to clean house, do some laundry, get fresh groceries and supplies when we get back home… but oh won’t our home feel so blessedly wonderful again after several months at Hopkins?!
I want to leave Johns Hopkins so badly that I practically need anti-anxiety meds just to keep me from bouncing off the walls. We were admitted to Johns Hopkins on June 13th, 2019. It is now August 14th, 2019, as I type this.
There is much to be thankful for. It’s been nearly 60 days since my bone marrow transplant from an unrelated donor, and I haven’t displayed any issues, infections, or symptoms of Graft vs. Host Disease (GVHD). Tomorrow we’ll be meeting with the Clinical Director for Oncology to review my medical history, followed by a full-body CT scan to verify I have no additional recurrences of cancerous tumors. On Friday, I’ll have my Hickmann Catheter removed in interventional radiology. Hopefully, we’ll be returning home on early Saturday morning.
God willing, of course… it’s been such a long journey, and there is much to be thankful for. And now? Now we’d simply like to go home and be reunited with our family & friends.
Hopefully, this will be our last week at Johns Hopkins before being discharged home. Vicky and I attended the “Discharge and Home Care” class this last Thursday. We were told we’d likely be discharged from Johns Hopkins on Friday, August 16th.
Between now and Friday, I’ll be getting a bone biopsy, a full-body CT scan, and have my Hickmann Catheter removed under interventional radiology. As you can see in today’s picture, that’s our living room triptych behind me. We were able to go home for a couple of days as a trial and to prepare for our homecoming. Vicky and I were able to spend Friday and Saturday (today) cleaning the house, running errands, and preparing for our return home.
Tomorrow (Sunday) will be back to Johns Hopkins in Baltimore for what we hope will be our last week there. God-willing, I’ll stay healthy and we’ll be able to go home this coming Friday!
Other patients, some younger than me, have endured whole-body infections and pneumonia since their transplants. I have been incredibly fortunate. I received good news today while the patient in the clinic beside me received bad. I didn’t know how to react to that… I have been blessed beyond all measure.
All going well, Vicky and I will attend our first Discharge and Home Care class this coming week. All going VERY well, we’ll likely be going home on the week of August 19th.
Pray for us. I truly hope and pray that we’ll be home and reunited as a family again soon.
It’s been 32 days since my “Birthday” (Bone Marrow Transplant) on June 20th, 2019. I can understand now why they say that each bone marrow transplant patient is different. We each handle the effects of heavy-dose chemotherapy, irradiation, immunosuppression, multiple transfusions, and all of the side-effects & symptoms differently. I can say, definitively, that your outlook and determination has a strong bearing on your recovery. I credit my relative youth and persistence to my quick recovery.
How we address ourselves and our mindset has an immense effect on our health and recovery. In the our daily and hourly thoughts where we grouse to ourselves that “we’re tired, we’re worn out, this is exhausting” the body internalizes our thoughts, our health and personal energy match our mental attitude. I have to catch myself in such times when I’m quick to complain or be frustrated with my health and recovery. I change what I tell myself, reminding myself that I love my family and friends, that they are rooting for me, praying for me, supporting me, and that I so badly want to go home to my family, friends, co-workers, and rewarding job again.
People ask me what to expect with a bone marrow transplant. I routinely ask oncologists and other patients the same questions. People are still asking me as patients, families, and caregivers struggling with their own journeys. This is is my attempt at answering those questions.
Chemotherapy is rough. You WILL lose your hair, it’s not a matter of IF but WHEN. If your body image has you loving your hair, try to find and do new things to make it easier for when that time comes. Whether it’s sharp and stylish “dew rags”, a jaunty hat, or a fierce shorn look, try to exert control over your situation and assert yourself rather than being unpleasantly surprised and overwhelmed.
My original hair loss due to maxi-dose Cytoxan involved a Stephen King-esque scene where my hair came off in massive clumps as I showered a week after my first chemo. I felt like I was going to have a heart attack in the shower as I watched my dark hair come off in clumps in my hands. I immediately screamed for my wife, we calmed each other down, and I shaved my head after that experience.
Immunosuppression and Irradiation are rough. You will vomit, dry heave, and have diarrhea.Prepare yourself for the worst. Prep a “puke bucket” that will be your friend and companion some days and evenings. Use anti-emetics such as Compazine, Zofran, and Ativan around-the-clock so that your body has a constant protection against nausea in your system. You will need to “titrate” (slowly scale yourself back) off these drugs once you know you’re over the worst of the effects of NVD (Nausea, Vomiting, Diarrhea).
Expect swelling, dry mouth, rashes, redness, and sores. Brush your teeth and use mouthwash often. I use Biotin as a toothpaste and mouthwash with a very soft toothbrush after every meal and before bed. I use Burt’s Bees and Farmacy Honey Butter on my chapped lips. I sometimes wear athletic compression socks to deal with my swollen ankles and legs. All of these effects are due to the chemo, irradiation, and immunosuppression your body is under.
And in other news….
My first 30-day Chimerism Analysis was taken last Thursday, June 18th. I’m eagerly awaiting the results and to discuss it further with my Johns Hopkins oncology team… hard to believe it’s been over a year since I was first diagnosed with Stage 4 Mantle Cell Lymphoma (MCL), but I truly hope and pray this bone marrow transplant puts me into a full recovery and remission.
Allogeneic hematopoietic stem cell transplantation (HSCT) is an effective therapeutic approach for several hematological diseases. Chimerism studies can be helpful to assess donor engraftment, detect early signs of graft rejection, and monitor minimal residual disease. Currently the most common method for monitoring chimerism following HSCT is by PCR amplification of STR loci followed by capillary electrophoresis. Prior to transplantation, multiple STR loci in both the donor and recipient are analyzed in order to identify loci that differentiate the two individuals. Informative loci are selected to calculate the percent donor and recipient present in post-transplant specimens. This is a rapid, sensitive, and cost-effective method for monitoring chimerism in patients following HSCT.
