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Anaplastic T cell Lymphoma - any kids out there with this?

salfam66
Posts: 3
Joined: Mar 2012

Our 9 yr old son, Evan was diagnosed with Anaplastic T cell Large Lymphoma (Non-Hodgkins Lymphoma) in Oct 2011 and still on chemo. International studies conclude there's no optimal treatment so the U.S. uses a leukemia-type protocol. Other countries use a B-cell lymphoma protocol....it's all guess work. We read that statistics reported in studies for "survival rates" and "response rates" etc are skewed and misleading.
ANY kids out there doing well with this diagnosis??? It's rare, so there may not be many.

There's not a "cure" for ALCL with chemo and it's VERY toxic, and our mainstream oncologist does nothing to support the immune system. Also, we were told his doses of chemo will not be reduced despite any side effects he may get, ie unable to walk due to neuropathy, heart problems, etc.
Soooo, we consulted with integrative oncologists who use alternative treatments to offset toxic side effects. After starting many nutritional, herbal supplements, our son is doing great and his hair already started growing back ~2wks later. He has alot of energy, no pain, he laughs, smiles, no mouth sores, no constipation, and is back at school part-time.
Pet scans remain good.

Our alternative/pediatric oncologist ordered a Troponin I level because of the cardiotoxin doxyrubicin. The value was critically elevated even 3 wks after his last doxy dose.
We insisted our son not be pushed to the max level of doxy (300mg/m2) despite what the "standard" protocol said. Studies we showed him recommend <240mg/m2 to decrease risk of heart damage. It's a known fact doxy causes heart damage...it's written loud and clear on the drug insert...and elevated troponins are a significant predictor of this late, progressive side effect, but no oncologist will even tell you about it. Why? because if it was high, they would be faced with making a decision to decrease chemo. They would rather have a cardiologist do damage control later, when the child has clinical signs of damage. By the time abnormalities show up on an ECHO...it's too late, you can't reverse the damage done.
Oncologists often ignore the long-term, late effects of chemo, but after presenting our facts and arguments, our oncologist said we've made him question how he practices medicine! That says alot. We will continue to be advocates for treatment that will do NO harm....there are many out there, but you have to go looking for them. It's scary to go against the norm, but we believe you have to treat the whole body and boost the immune system, and promote an alkaline body with lots of oxygen, so the cancer cells can't thrive.
If the Cancer Society disagrees with this message, they will probably remove it. If that happens it's because of the extreme pressure the pharmaceutical companies have on the government and the whole cancer industry. Drug companies do not want you to know of all the natural compounds available to anyone that help people all the time....as long as patients aren't already too compromised by standard therapies. Yes, patients are helped by chemo and they are on survivor boards, but they also had pain and suffering during toxic treatments. And how many don't do well?
Even alternative oncologists legally have to offer chemo/radiation first, so you'll never be offered anything else first. Patients/parents have to do there homework and read the studies out there. I can offer more details if anyone is interested in what we are currently doing for our son....yes, along with chemo, but with a modified protocol.

Evan's mom

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