Sunday, September 20, 2009

Written so Rachael will know we did not approach this lightly.

A week ago I posted a question on the Melanoma International Foundation’s forum asking for experiences with interferon so I could better prepare our family for what is ahead.  One of the strongest voices in that discussion was from Catherine Poole, the President/Founder of the foundation, a melanoma survivor herself and author of Melanoma Prevention, Detection and Treatment.  She strongly objects to the use of interferon.  Here are some excerpts from our conversation.

Catherine Poole wrote:
“MD Anderson is a good place, but if they continue to use Interferon there should be some questions asked. What do they hope to achieve, it only at most extends the time for recurrence in 8%? What will the long term affects be on this child? Will she lose fertility, have problems with depression, etc?  Not only does Mayo clinic not prescribe interferon, neither does SLoan Kettering, UPENN, or Johns Hopkins, all the cream of the crop melanoma centers.  The latest research confirmed that interferon did not extend longevity, and that one month was as effective as one  year.  There are pharmaceutical politics that play into this and this drug has lost it reputation for treatments in other disease groups.  I would DEFINITELY get another opinion from a top notch melanoma center before you proceed.”
I wrote:
“It comes down to this for me... if we did not do it and it comes back, could I forgive myself?  I could not.  I will still question it and speak more with her doctor but ultimately, I think I will have to do it.  The rest is in God's hands.”
“You can't look back on your decision once it is made.  I remember the newscaster, Sam Donaldson and what he said when he made the choice to NOT get interferon. He said he's never looked back on it.  The pros and cons should be weighed.  The overall efficacy of the drug is very low, if it is coming back, it will come back either way, with or without interferon. The drug is only proven to extend the time for recurrence and a short amount of time.  The bottom line is it does not extend survival time. I would certainly have a pediatric oncologist weigh in on it.”
“If what you are saying is true Catherine, then WHY would her oncologist say that he would give his own child this drug if she had what Rachael has?  I cannot imagine he would go that far for a financial kickback.  If it's so clear, then there wouldn't be a question.”
“I have no idea why the oncologist would say that.  I have talked to many specialists in melanoma about your situation and they say the opposite.  No one knows what interferon will do long term to a child. DIdn't your oncologist say it has only been prescribed to 100 children total? We do know the small margin of benefits this drug has and it is not a good trade off for any age. But many docs go by the book, this is an FDA approved drug for stage 3. They don't look outside the box and feel prescribing "something" is important. Watch and wait is equally good without worry of long term side affects. I can tell you for certain that the following top institutions for melanoma treatment do not prescribe interferon:  MAYO Clinic, SLoan Kettering, UPENN and Johns Hopkins.  I would certainly look to another institution for an opinion if I were in your shoes and make sure they were a pediatric oncologist with melanoma specialty.”

She has said that there are a couple doctors willing to do a phone consult with me.  So if they back her up but her oncologist at MDACC still says it is worth going ahead with the treatment, then what?  It’s up to us.  And either choice could have life and death consequences.  And YOU try finding information on the internet about it.  I’ve looked and there is little to none.

This is what one article dated in 2009 about pediatric melanoma has to say about interferon:
“A recent prospective trial of adjuvant interferon treatment was conducted for 15 patients with stage III pediatric melanoma.65 Of these 15 patients, 9 completed the therapy and 2 recurred during therapy. Pediatric patients suffered less toxicity than adults, mainly neutropenia.

Another recent report examined the use of highdose interferon in 6 pediatric melanoma patients with metastatic disease on sentinel lymph node biopsy. Five of 6 underwent complete lymph node dissection followed by high-dose interferon treatment. Four of the 5 completed treatment and were in remission at the completion of the study with a median of 26 months follow-up, and 1 was still receiving treatment. Dose adjustments were required in a significant number of patients: 2 for myelosuppression and 2 for abnormal liver function tests.

In summary, while the impact of this treatment on recurrence and survival remains to be determined, it is feasible to offer interferon to pediatric patients.” (Bold mine)

“Feasible to offer interferon”?  “Feasible”?!  Are they serious?  THAT is what they concluded?  Not to get too terribly boring here – too late, I know – but one definition of feasible is this: “reasonable enough to be believed or accepted”.  Let me be a little clearer here than this article is: I DON’T WANT “REASONABLE ENOUGH”!!  THIS IS MY DAUGHTER AND I WANT ABSOLUTES!

There are no absolutes and so we are left with a very difficult decision.  Many have asked how they can help.  Pray for King Solomon style wisdom here.  Both choices suck but we have to choose one.  Rachael’s future may depend upon our decision.


  1. Danielle I am going to continue to pray for wisdom for you guys. As we talked about before, I think another voice in the conversation is a good idea. BUT, and this is a big but, I want to encourage you to let that voice be someone who can see your daughter. Let it be someone who will hold your hand, touch your child, and consider their own child before they tell you not to try everything.

  2. Much love, Danielle. How terrible for everything to be so unclear. You are in my prayers.

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