Easing Childhood Cancer Treatment Symptoms


  • I have not written on this subject in this blog, although we have detailed much of the information on Miranda’s site:

http://www.caringbridge.org/visit/mirandabeamer

I wanted to give out this information, as is. It is not scientifically sound, as a study of 1 is not scientifically significant. Perhaps over time we will amass enough cases we can push for a study on some of these items.

What I describe are Complementary treatments, or treatments to be used in conjunction with standard oncology treatments. They are not alternative treatments, meaning in lieu of standard treatments. Here are two things to keep in mind, one against either side of decisions on complementary treatment options:

  • Always talk over any complementary treatment with your doctor, as there are supplements that interfere with chemo (selenium and cisplatin come to mind)
  • Conversely, when you doctor states “there is no evidence that suggests it works” understand that there is generally no evidence it does not either.

    NOTE: It is unlikely, if the current system persists, there will ever be evidence complementary treatments are effective, as complementary treatments are not generally tested in clinical trials (there are currently 63 for antioxidants with cancer, but most are aimed at abating symptoms, none deal with antioxidants at the same time as chemo – on the other hand,, there are 354 trials for actively using trastuzumab (aka, Herceptin) in cancer treatment – 63 for antioxidants and 354 for 1 drug).

We found nothing in what I write about here that goes counter to standard treatment, nor did Miranda’s primary oncologist. We also found great success with each of the items mentioned. But, as I will state over and over again, a study of one is not a scientific study. At best it is anecdotal evidence. If I had to do this over again, I would have started these methods earlier to completely avoid the pain.

Background

In September of 2007, Miranda was diagnosed with Ewings Sarcoma, a rare childhood cancer, at the age of 3. Over the next month, we experienced both the horror of cancer and the horror of the treatments used to fight cancer. once we realized that the doctors main, if not sole, job was to kill the tumor, we felt it necessary to research options to alleviate some of the pain of the treatments.

Miranda’s treatment regimen was 7 cycles of two alternating rounds of chemo:

Round 1 (VinCAid)

  • Vincristine (the Vin in VinCAid)
  • Cyclofosfamide (the C)
  • Doxorubicin (Adriamycin, thus the Aid)

Round 2 (IE)

  • Ifosfamide
  • Etoposide

Many of the chemo agents above can cause severe gastro-intestinal problems. In addition to the above, she was given prophylactic doses of antibiotics to keep infection at bay, killing off much of the gut flora.

Mucositis

First, what is mucositis? Mucositis, in simple terms is swelling and the formation of ulcers in the mucous membranes along the digestive tract. Essentially, it is chemo tearing up the lining of the entire digestive tract. One teen boy described it like “getting a potato chip stuck in your throat”, but the pain being thousands of times worse with no way to wash it down.

During Miranda’s first round, she experienced horrible mucositis. So much so, we could not get her to eat. The two most startling symptoms were:

  • A sore that covered almost her entire tongue (imagine a canker sore this size and you get the idea)
  • Vomiting up what appeared to be giant spiders (from ulceration of the throat and stomach)

The doctors gave us mouth wash and pain meds, neither of which seemed to offer much relief.

After the first round, we determined something had to be done and found L-Glutamine. After putting her on L-Glutamine, most of the symptoms disappeared and we certainly never had a round anywhere near as serious as the above.

Our method of choice was mixing L-Glutamine in with her juice and having her drink it. At the time, there was no way to get her to swallow pills, so it was necessary to find something she could drink. You can buy L-Glutamine in powder form and give a scoop once or twice a day to abate symptoms.

The idea that L-Glutamine works on mucositis was noticed by the NCI, who started a clinical trial, which was later withdrawn due to lack of funding. I am sorry to see the trial cancelled as it would be interesting to see if others had the same success we had.

Clostridium Difficile (or C Diff)

C Diff is a opportunistic bacteria that creates a whole host of problems for the cancer patient. You first notice it by its unique odor, which is unmistakable. It is generally combined with very bad bouts of diarrhea. It can be fatal if not treated. The solution to C Diff, from a medical perspective is to give very high doses of strong antibiotics, like Vancomycin and Gentomycin. In Miranda’s case, these led to some rather severe kidney problems. In my book, that makes C Diff a good thing to try to avoid.

We went through three rounds of C Diff early on in the treatment. We then started researching and found that probiotics showed promise against C Diff. C Diff appears to be a rather weak bacteria, compared to the natural gut flora. But it is also opportunistic and grows like a wild fire when the gut flora is killed off. This is common when you use antibiotics as readily as they are used with a child with cancer.

After starting probiotics, we never saw another C Diff infection. We found out later that the main oncology transplant doctor at the hospital prescribes probiotics for his patients.

Others

I don’t have the details on what we used when Miranda had her kidney problems, so I don’t want to write about it here, as incomplete information is useless. We also used a variety of supplements to combat potential future heart problems, including fish oil (anti-inflammatory) and CoQ10 (antioxidant), although we did not use any antioxidants during the actual chemo drip, as doctors state it will render chemo ineffective (there are animal studies that refute this, but none in humans).

Peace and Grace,
Greg

Twitter: @gbworld

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