Masters level Part 1, Pain-pain go away, DON’T even come again any other day!

This informative content covers physical, psychological, social and spiritual well-being, with suggestions, considerations, and reminders broken down into different levels: FRESHMAN, SOPHOMORE, JUNIOR, SENIOR, MASTERS 1&2. The Freshman section guides the next important steps immediately after finding out one has cancer, the Sophomore and Junior levels give in-depth information about monitoring changes in cancer patients’ bodies, including familiarity with blood work, scans, nutrition, side-effects, and medication. The Senior level explains the final steps, specifically discharge and life at home. The Masters level gives an exclusive look at the Stem Cell process. Look out for updates in the future, subscribe to our YouTube channel, and please comment and respond. Your opinions are welcome and might help others.

The Maters Part 1

iLeukout does not conduct or use scientific peer-reviewed data to make any medical claims or reporting. Please confirm with your medical professionals and advisors before attempting or continuing any considerations presented by iLeukout. iLeukout does not make any pharmacological recommendations on our posts. Drug-related references are detailed by what methods the author of the post or their medical team might have used. Every patient and medical team is different, and what may have worked for one patient may vary significantly for another, including benefits and side-effects.

Common terms you might encounter:

Counts - This refers to the number of cells counted in a Complete Blood Count (CBC)

Neutropenic - According to the Mayo Clinic, this is when the immune system is not doing so well, and specifically, the white-blood cell count is low, usually under 1,500

Mucositis - When powerful chemotherapy and often radiation kill fast-growing cells in the mouth, throat, on the tongue, and further into your digestive system. It could lead to painful mouth swelling and sores that form on the mucous membrane

White-Blood-Cells (WBC) - Part of the body’s defense system that fights impurities or bad guys. They can also attack the good guys at times

Hemoglobin - Red blood cell responsible for carrying oxygen throughout the body

Anemia - A side-effect of having low hemoglobin in the body

Chemotherapy (Chemo) - Drugs used to kill fast-growing cells, including cancer cells and even good cells

Central Venous Catheters (PICC line, Tunneled catheter, Implanted port) -According to WebMD, small tubes that are inserted in a patient, later used for drawing blood and infusing medicine

Platelets - Help clot the blood together in the vessels, limiting bleeding

Oncologists - Doctors who treat cancers or tumors

Hematology - The study of the blood and its many parts

Stem-cell transplant - Good cells are infused into the body, and hopefully they attach to the bone marrow to produce healthier and non-cancerous cells

GVHD – Graft-Versus-Host-Disease

This is the Masters! I’d say welcome, but there’s no need for that yet, we have serious work to do. First, why are you here? Chances are that cancer treatments didn’t work out as needed, and the next option is a Stem Cell Transplant (SCT). The American Cancer Society details the process of an SCT and explains the procedure from start to finish. The term SCT is often used interchangeably with Bone Marrow Transplant (BMT). In this blog, you would discover exclusive tips, ideas, and insights of this complex journey. You would gain point-of-views from a patient who received stem cells, and a donor who gave their cells to extend a life.

One might be getting into the world of cancer treatment for the first time, or their medical team has informed them that limited options exist besides an SCT. If this is your first experience with cancer treatments in general, it is recommended that you read the previous blogs, Freshman, Sophomore, Junior, and Senior before continuing to the Masters level. The previous blogs detail what one might do once they are told they have cancer - through their treatment phases - and the last day you are free of treatments. When relapsing, several indicators may arise. Extremely low or high blood counts, fatigue, light-headedness, dizzy spells, nausea, fevers, chills, night sweats, poor blood circulation, easy-bleeding, neuropathy, and burning feet are a few symptoms that could be associated with relapses after previously being in remission.

Paying attention is very inexpensive right? At the Masters level, patients will HAVE to be more alert and precise than ever. Understanding what is going on inside and outside the body has never been more critical. The slightest hints of internal and external body pain, rashes, abrasions, discomfort, central-line discomfort, and other critical symptoms and side effects would need to be observed and reported at various stages. Document everything you can by keeping notes and snapshots on digital devices. These records can help when you cannot remember, or for comparisons of changes in the future.

Here are the Top 7 takeaways from the Masters Level Part 1.

1. The Big Decision. This stage can sometimes be the most challenging since no further steps can begin unless this step is successful. The medical team will meet with a patient to discuss options for the stem cell transplant before deciding if a donor is needed. The main types of SCT include one that uses the patient’s cells to fight cancer (AUTOlogous), and the other method is one that must consist of a foreign donor (ALLOgeneic). The severity of cancer, the patient’s health insurance, and also current and previous health statuses help determine treatment decisions by the medical team. Once the medical team has decided the best treatment strategy to use, they will present the plan to the patient/family, while preparations for pre-treatment procedures begin.

2. Testing 1,2,3. Before an Auto transplant is underway, an adequate match must be found. For a donor to be considered a match, a Human Leukocyte Antigen (HLA) test is conducted to determine if the donor’s cells fit the patient in need. Siblings are often the first option when searching for the best match. If the patient has no reasonable sibling match, the medical team might consider using an offspring if possible. Finding a reasonable match is something that is quite difficult to accomplish, and patients usually feel lucky or blessed when they receive the news that a donor match has been found. It is very common that patients do not receive that good news, and may not make it further in the treatment, simply due to the lack of a reasonable donor match. Once the testing phase is complete, both donor and patient are on to the paperwork phase.

3. Paper Work. Nobody likes paperwork. However, this section is relevant due to the amount of official paperwork that must be completed. These official documents range from waivers allowing the medical team to perform their treatment plan, power of attorney, liability issues, and the confirmation that the information given by the transplant coordinator is understood. A portion of the paperwork also includes a patient’s consent to treat, understanding the risks associated with contracting any known and unknown disorders that may come with the donor’s cells. This issue may be a positive and negative situation since positive healing cells are being extracted during the transplant infusion, but harmful viruses could also be part of the mix. Whether negative or only positive traits exist within the donor’s cells, the receiving patient may decide if they must continue with the transplant. Sometimes, there is no other option since the cancer is more formidable than other problems.

4. Pre-transplant. Just before the actual transplant begins, several pretests are conducted, including lung function, a complete oral check from a dentist, optical exams, echocardiogram, CT Scan (CAT), X-rays, and any similar assessments the medical team recommends. Pre-medications are administered before the chemotherapy regimen begins. Some pre-meds include steroids that could safeguard the body against the incoming procedures. Another key medication is Palifermin, which could help lessen the uncomfortable effects of devastating chemotherapy that attacks the good and bad cells in the mucous membrane. Palifermin is often used for patients undergoing intensive radiation therapy and is highly recommended for the transplant process, even if health insurance is proving challenging to approve payment for this drug. Patients may also be asked to discontinue taking various routine medications, herbal supplements, and vitamins during this phase.

5. War Within War. An Auto transplant may not be considered as complicated as Allo, which deals with receiving another person’s cells, Deoxyribonucleic Acid (DNA), imperfections, and healing features. The long-term and short-term effects of Allo could also be far more traumatizing than those of Auto. For example, Graft-Versus-Host-Disease (GVHD) is a common side-effect that is expected during an Allo transplant. This disease is an effect of the new donated cells settling into a foreign body, their new home. During this process, the new foreign cells and the host system may attack each other. This internal civil war can be a positive sign because the potential of a fight within the immune system could indicate the possibility of the cells also fighting against cancer cells.

6. The Storm Before the Other Storm. The medical team recommends their suggested chemotherapy regimen based on a patient’s history with previous medications, physical balance, current state-of-mind. The chemo regimen is intended to “wipe out” the patient. Extensive, powerful, major, high-dose and any other word that is associated with “very aggressive” are all adjectives used to describe the type and dosage of chemo during this stage. The chemo intensity during the transplant stage is far beyond that of the stages that do not deal with stem cell transplant. The reason for the chemo aggression is that the patient’s stem cells, which are buried deeply inside the bone marrow, must be destroyed to make room for the new cells. This treatment can lead to several side effects that are detailed in previous sections, (Please see Freshman, Sophomore, Junior, and Senior sections). The side effects such as low blood counts, mucositis, nausea, neuropathy, and overall body pain are just a few of the experiences felt as the chemo regimen begins to do its work. One can expect the side effects of the chemo treatment during the transplant faze to be more severe than without transplant. The duration of the chemo regimen can range from a few days to two weeks, while the patient’s vacant bone marrow prepares to accept the donor’s healing cells.

7. Live Every Day Like It’s Your First. A detailed schedule which displays tips 1-7 on this blog would be made and provided to patients and their caretakers during the transplant process. As the transplant draws closer, more pre-meds are given, such as Ativan, Benadryl, and Tylenol. These medications help control pain, allergic reactions, and nausea that may be experienced during the transplant. Patients’ vitals are closely monitored during the entire time, and even hours afterward.

On transplant day, patients, their families, and friends may become overwhelmed with the entire process, as this can be quite an emotional day. Don’t always expect the same from the medical team, as they might have seen several transplants beforehand, and take their composed professionalism seriously on big days like these. During the hospital stay, it is essential for patients and their caretakers to be watchful of malpractices by medical professionals. Malpractices should be called out and reported to superiors. The margin of error during a transplant is nonexistent. Patients trust their medical professionals to be accountable, since their lives depend on it. Medical professionals who are not behaving professionally or hygienic may endanger the success of the transplant treatment. Reporting misconducts such as improper hand-washing or sanitizing, lack of sterile gloves, neglect, etc., could help save the current patient and future patients’ lives.

As shown, the modern-day transplant infusion is pushed into the central line

The modern-day stem cell transplant procedure comprises of healthy cells being collected from the donor, through a process called aphaeresis. Plenty of the donor’s cells are collected during the aphaeresis process, and certain types are kept and used for the transplant, while the remaining cells are returned to the donor. This process could be completed as an outpatient, rather than during an extended hospital stay. The transplant requires no surgery at all. After the donor cells are collected, they are preserved immediately until transplant. When the medical team and patient are ready, the cells are transported into a syringe that is used to infuse the cells into the patient’s central line. The procedure is simple and feels like blood or platelet transfusion. Don’t worry, the cells are smart enough and know how to maneuver through the central line and into the bone marrow. After the stem cells are infused, patients may not experience plenty of changes from the day before transplant to the day of. Low blood counts begin a few days after the chemo starts and continue until the donor cells begin to sprout in the bone marrow.

The goal of the transplant is to replace the patient’s malignant cells with healthy ones. Patients are watched closely for signs of transplant success during the first 100 days after transplant, as this is the most important period after transplant. Patients are more susceptible to transplant rejection and infection within the first 100 days. Early side effects experienced during the first 100 days of transplant are called acute GVHD, while those that occur afterward are part of chronic GVHD.

This blog post covers the beginning steps of the stem cell transplant The Masters Part 1 for the patient and the donor. Further tips that include the acute and chronic side effects, what to do when cleared to go home, additional tests to look for, Donor Lymphocyte Infusion (DLI), stem cell preservation, chimerism, and red flags that may indicate a relapse, will all be specified in The Masters Part 2. Please check the iLeukout website for the release of the stem cell transplant The Masters, Part 2.

iLeukout’s exclusive perspective from a donor’s perspective

You donated your cells to save a life, how comforting was it to hear when the process finally worked out?

“I like the word comfort in the question. It was very comforting to hear and see the success of the process. I felt more confident that there was a reason I was a match, and I was glad I didn’t back out of the opportunity”.

You had an interesting situation where your cells didn’t work for the patient at first. Then you found out at a much later date, that the process did work, your old and new cells saved a life. So you have experienced both sides of the negative and positive outcomes when donating. Talk about the negative and positive news that you had to deal with.

“I’ll start with the negative. This news took me on an emotional roller-coaster. Emphasis was laid on the success of the transplant, and not as much on the possibility of failure. I wasn’t quite prepared for the news of the failure of the first transplant. I kept asking myself if we were such a perfect match why didn’t it work? I wondered about the reasons why the transplant failed. As much as I was disappointed, I never lost hope. I made the decision not to be bothered by the fact that my cells didn’t work and continue to give support wherever I could. Meanwhile, the transplant never failed, instead it took a while to start working.

Hearing the news that my cells, both old and new, worked was revitalizing. I took a deep sigh of relief after understanding my cells from the first transplant is what kept my brother alive all along. All the feelings of failure turned into that of success and joy, joy beyond measure”.

How much joy and accomplishment does it bring a donor like yourself? What are some of the feelings you had before and after donating?

"With each day that passes by, I feel a great sense of joy and accomplishment knowing that I truly gave the gift of life. Ordinary people do extraordinary things, but in this case, I’ll say God used me to do his work and I feel blessed just being a blessing to my brother. In both cases, I had mixed feelings of happiness and sadness. It was an overwhelming feeling to know that I saved someone’s life and that someone was my blood, my brother".

What are some of the physical discomforts that you had to deal with while donating your cells?

"Hip pain, muscle pain, back pain but it was caused by the pre-meds before the cell extraction process. The first time I donated my cells, I had short-term discomfort and pain from the neupogen shots I was given to increase my cell production. This was very emotional for me because I got to experience and understand the pain my brother endured when he was given the neupogen shots firsthand. I had some bone and muscle aches prior to the extraction and was so exhausted after the procedure. My exhaustion only lasted for a few hours, and I was fine the next day.

During the second donation, I wasn’t pleased about having an arterial line placed in my neck because I felt plenty of pain at the central line site. This came with anxiety, but I found comfort and joy in that moment - knowing the result which was to help save my brother’s life".

What do you think are the most prominent misconceptions about donating?

1. "Pain during the donation process. People think of the old method of drilling down into one’s bones to extract the cells which is painful, but there are other methods of extraction that are way less painful.

2. Another misconception that I even had prior to the donation process was that all donation involves surgery. Surgery is only needed for donors giving stem cells from their bone marrow, and peripheral blood stem cell donation, which is much more common today, is non-surgical.

3. The final misconception is that the cells donated can never be replaced by the patients, and also that the recovery time is very long".

Would you recommend others to donate? And why?

"Absolutely! For many people diagnosed with a blood cancer or disorder, a blood stem cell transplant is one of their only chance at survival. Your donation gives a cancer patient more time to enjoy life and spend more time on earth with loved ones, graduate from college, start a family or business, and even give back to their community.

What would you tell people that are thinking about donating?

"Help cure someone’s disease by registering with 'Be The Match' and give the gift of life." www.bethematch.org