What is Leukemia
Leukemia and other diseases of the blood and bone marrow may affect red blood cells, white blood cells and platelets. Common types of leukemia found in childhood cancer are:
- Acute lymphoblastic leukemia (ALL): a fast growing form of leukemia that occurs when the bone marrow makes too many immature lymphocytes (a type of white blood cell).
- Acute myeloid leukemia (AML): a type of leukemia in which the bone marrow makes a large number of abnormal blood cells.
- Juvenile myelomonocytic leukemia: this type of leukemia forms when too many bone marrow stem cells become two types of white blood cells. Some of these cells never become mature white cells.
- Chronic mylegenous leukemia: a form of leukemia that occurs when too many bone marrow stem cells become a type of white blood cell called granulocytes. Some of these cells never become mature white cells.
Treatment for children with leukemia is tailored to each child, depending on their illness. Chemotherapy and radiation are often used. At times, a blood or marrow transplantation (BMT) may be recommended.
Sources: U.S. National Library of Medicine, American Cancer Society, National Cancer Institute
Managing Insurance and Expenses
It’s important to resolve financial issues before they become a source of increased stress or limit your access to needed treatments, prescription medications or support services. Therefore, discuss payment options with members of your healthcare team or the treatment centers’ patient financial services department. Patients and providers can work together to devise ways to reduce costs without compromising treatment. Ask your providers about:
- Switching from a brand name drug to the generic
- Reviewing a medication list to see whether you’re taking nonessential drugs
- Enrolling in a Prescription Assistance Program (PAP)
- Referring you to a public agency or a social worker
The reference below will provide a very comprehensive list of many of the medications that you may encounter. There are others that will be encountered to treat side-affects of these treatments so it is by no means 100% complete. By the end of everything you will know more than you ever wanted to know and be able to recite these verbatim along with potential side-affects encountered.
Along with the very many chemo medicines that form part of the protocol to treat ALL B-Cell Leukemia there are essentially drugs three main groups.
- Outpatient Chemo where you come in on a regular basis to be given medication by IV through a port-a-cath.
- Inpatient Chemo – where you have to be admitted for several days (such high-dose Methotrexate)
- Outpatient Medications that are administered at home, such as Steroids, Antibiotics, pain-killers, Vitamin D, Oral chemo pills like 6-MP, Zofran, Maribinol, and more. Some have daily dosages, others are as-needed.
Pill Management Tips
- Use a 7 Day AM and PM Pill Box and disperse ALL the pills on a weekly basis (for James Weds to Weds was best because clinic was always Weds).
- When you have a large variety of pills (7 or more) – I found it best to take pictures at the end so I could be sure if I had to check what meds I had put for which day and time….USE THIS TIP !! (the feeling of not knowing if a child has or has not taken something is awful).
- Try not to overload the child by giving too much at once ! (This happened to us once and we felt awful – James was prescribed Maribinol for anti-nausea and appetite while at the same time being on Anti-biotics, Steroids and Vitamin D and it was the first day that we were introducing some new meds…he ended up being very spaced out by all the meds and the result was everything you didn’t want to see happen). You can’t really give any rule of thumb here because even two of the “wrong” medications taken together could create a problem….seek specific advise from your Doctor on how best to provide to avoid creating issues. In many cases several medications can be taken together with no ill effects but never assume this to be the case. Also taking food with certain medications has been helpful to reduce nausea. So taking them at breakfast or dinner is best.
- Dealing with nausea – Try to stay ahead of this – for instance if we knew we were going in for chemo and likely to suffer from nausea (not all chemo has this side affect) then a Zofran at breakfast time was always a good thing for James. This wasn’t always necessary but sometimes it was better to be safe than sorry.
- Rhoid Rage, Psychosis – Herbal Tea Helps Here
Some of the Steroids for James were notorious for inducing aggressive or emotionally unstable feelings for him. He suffered when on steroids and it was important to us to find something to counteract the aggressive behavior and reduce his temper. Enter Yogi Bed Time tea !! We would give James Bed Time tea during the day to reduce the impact of the steroids on his emotions – and often times I would double bag it to increase the effect…this was a life and sanity saver !
- High Blood sugar
Exercise is very helpful – A second side effect of Steroids for James was increased Blood Sugar. We were proactively monitoring Daily monitoring am and pm. To counteract this we bought James a stationery Exercycle – (Amazon has some perfectly adequate bikes for under $150) That’s all you need – 10-15 mins 2 to 3 times a day was normal for James. It really did help. At one point the steroids had given James increased energy and he needed somewhere to direct that energy – the Exercycle was an extremely effective way to deal with it. At one point he was so energized up by the steroids he cycled for an entire hour in one sitting…don’t expect to see that very often but it was good to have an outlet for James.
- Lumbar Puncture headaches
LP’s in the beginning would leave James with delayed chronic headaches (to migraine level) leading us in the early stages to constantly get more and more powerful pain killers. Ultimately we did NOT have to stay on strong opioid pain killers for long as Dr Sun was able to find the use of a rounder needle (vs a sharper needle) to use for the LP procedure. This resulted in less side effects and significantly less headaches to no headaches for James. This was great because we were concerned with Opioid based pain killers and addiction. Having said that Dr Sun reassured us – in the case of Chemo patients the incidence of addiction to Opioid pain medication was not necessarily as high as non cancer patients. We couldn’t tell you one way or the other as we never gave James more than a couple of days worth of those meds and no addiction was observed.
- Appetite vs Nausea
Food – was a massive struggle for James. Our advise is give the child whatever they desire to eat. If it’s pizza, so be it. Just watch out for high carb loads during steroids as this will drive up the blood sugar. During Steroids the more protein the better. James enjoyed protein shakes during these times (whatever brand they enjoy drinking) – Since often times the chemo took a toll on James, having him eat anything – period – was a good thing. I’m not going to pass judgement on getting the right nutrition content or whatever (although I do suggest low or no sugar within reason). We also found that a High pH water seemed good for James – our personal preference was Essensia and James would routinely drink 3 to 4 bottles (occasionally 5 if we were flushing out Methotrexate) but any high pH water should do nicely…I mean, honestly, any good clean water is preferable. Why? Think about all the chemicals circulating through their body, the more water the sooner they can be assisted to exit the body…assuming nausea is kept to a minimum. Zofran great help here to keep nausea down as was Maribinol to enhance appetite at times where nausea was stopping James from eating.
- Exercise to counteract the side effects of muscle-mass loss from Chemo
Everyone’s experience is different in this area and you should not feel bad if the opportunity for exercise is few and far between – the more movement the better – seriously sitting and resting is not good. In James’s case, he was a water polo athlete going into his illness and we felt that it was important for him – as much as humanly and spiritually possible to keep him fit. We were blessed to find a personal trainer who selflessly gave his time – coming to our home once or twice a week depending on how James was feeling and engaging James in various levels of exercise. The relationship and bond they had created during this time was priceless and we are forever in his debt. At the end of the intensive 9-10months of treatment Dr Sun was so amazed – and said that in all her time she not seen any other of her patients receive the amount of chemo that James had taken and come through the other side with as much muscle mass as James did. That was a testament to James’ internal and personal resilience, whether he knew it or not and the other huge part was the regular exercise with his personal trainer. In James’ case he reacted better to a non-family member to get him motivated than we could have done if it were Mum and Dad alone…keep in mind we are dealing with a teenager and as such their view is significantly more likely to be resistant towards parental encouragement just because of the fact their a teenager – no need for parents to think any less of themselves…that’s life !
THE JAMES SPERANTA ROADMAP
Learn about James’s journey from the beginning and how to be prepared every step of the way.
DISCLAIMER: This information is provided from the point of view of a parent who’s child has undergone successfully the course of treatment for ALL B-Cell Leukemia and is not intended to be taken as advice. Any mistakes are mine and mine alone and I will happy to correct these as necessary but the intention is to share my family’s experience with the hope that it will be helpful to others but not be taken as advice on best course of action. Each situation and individual is different so working closely with your Primary Oncologist and Nurse Practitioner is the only advice we can give.
There is a shortage of blood and platelets in LA County, giving blood is giving life each and every time. You can donate every 52 days and dedicate your blood to a patient, or to any child in need. Make a difference today and save a life. GIVE PLATELETS