food and cancer
 

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11-12-08 09:36 AM
shmuelandmiriam
food and cancer
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has anyone read this book that is written by a NB survivor dad (www.bobbysfund.org)?  He claims that dietary changes made all the difference in his son's recovery, but how can you make a claim with one personal case?

It probably doesn't hurt to do the things he suggests in the book, but is it worth it?

My family has always eaten pretty healthy and we have an air purifier, etc.  My son still got neuroblastoma.

 What do y'all think?

Miriam Landon

mom to Menschi, stage 4 NB

11-13-08 11:49 AM
mdungan
Re: food and cancer
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Miriam,

Great question!  I have heard many people bring this up in the past.  In fact, it does not stop there.  I can think of several different examples of people who have credited the survival of their child to all kinds of supplements and dietary changes.  Unfortunately, I can also point to just as many families that have tried these same things without success.  It is interesting to me that so many blame the survival of their child on a dietary change or supplement when they have also completed standard therapy which has been proven to improve chances of survival survival.  That fact remains that Bobby received standard therapy and standard therapy is proven to cure a certain percentage of children.

Now, with all of that said I also don't want to say that a healthy diet, environment, and lifestyle changes aren't important.  There are volumes written on the importance of nutrition, especially to those undergoing cancer treatment.  Supplementation is quite a different story.  I can point to several examples of people that have chosen to supplement their child and have, in fact, created more damage than good.  I can think of many examples where supplementation has actually increased toxicity and even examples where supplementation was actually antagonistic to chemotherapy.  In other words the chemptherapy worked less effectively or not at all due to the supplementation.  Bottom-line there is more that we don't know than we do know.  Don't gamble.  We all want to make sure that the changes we make improve survival - more often than not they do not.

Recently I attended a meeting for the NCI.  I think it is important to note that one of the six areas that the NCI has identified as a critical pathway for cancer research is diet and lifestyle.  There have been many studies that show that dietary changes certainly do impact cancer incidence.  Furthermore, we also know that dietary changes at certain key points of growth can have a lifetime impact on cancer risk.  There is no doubt that diet is important. 

My daughter was diagnosed with NMYC amplified stage IV neuroblastoma five years ago.  She currently has no evidence of disease.  She ate a healthy diet.  She also received standard therapy plus some experimental therapy.  While I think a healthy diet gave her the best chance of success, I ultimately beleive it was the months of high dose chemotherapy, her transplant, radiation, Accutane, antibodies, vaccine, and luck that has put her in remission.

With hope,

Mark

11-30-08 04:09 PM
shmuelandmiriam
Re: food and cancer
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Mark, 

Thank you for your response;  I've been having some major insurance issues getting 3F8 approved and so I've now decided to go ahead with the antibody therapy --- and pay out-of-pocket until I can switch to a better insurance.

Raising the $125,000 for the deposit of the 5-mnth treatment @sloan is not easy, and consequently, my son's situation has been made more public (through media and the like) forcing me to re-evaluate my decisions.  The "Bobby's Fund" vitamins/supplemental therapy keeps getting shoved at me as the magic elixir, and 3F8 antibodies are questioned vs. other options.  I have visited the other forum you have on 3F8 and found it very informative --- at least enough so that I was motivated to get a consult with Dr. Kushner to discuss my son's options (he thinks he'd still be a candidate for 3F8 even though his transplant was in July --- over the 100 day mark).

Since all we can do as parents is make an educated guess at the right decision to prolong our child's life, I feel these discussions are at least helpful in building confidence in those choices being made. 

If you have any further comments about the vitamin/supplement thing I'd love to hear.

In the meantime, you can find me busy fundraising.  Please feel free to stop by our website to see how we're doing and give any suggestions: www.thelandonfamilypage.blogspot.com

 

Thanks again for creating this forum & website!

Miriam Landon (mom to Menschi Stage 4 NB) 

12-01-08 10:14 PM
Andrea
Re: food and cancer
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 hi good choice...wondering what insurance company do u have? i had the same problem last year and had to get a lawyer (probono) and the insurance company finally approved 70%

good luck with everything

andrea

12-06-08 08:06 AM
dsormsby
Re: food and cancer
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We experienced similar difficulty getting insurance coverage for 3F8.  I am active duty military with fairly comprehensive coverage; the program is called Tricare.  However, MSKCC is outside of our insurance network, and the phase 1 trial (3F8 + Beta glucan) that was recommended to us was initially denied.  Through Livestrong.org, we were referred to the Patient Advocate Foundation (http://www.patientadvocate.org/).  In lieu of a lawyer, they helped us convince MSKCC to accept insurance assignment (act like a network provider for billing purposes) and got Tricare to cover everything that was "standard of care."  Basically, they paid for everything (labs, scans, bone marow biopsies, etc.) except the actual treatment office visits.  I would recommend them for anyone experiencing difficulty with insurance coverage.

My son, Nathan (stage 4, non-amplified), also started 3F8 >100 days post transplant.  At Dr. Kushner's request, Nathan received an additonal round of fairly high dose chemo and a 2nd stem cell rescue.  This was done to supress his immune system rather than directly attack the neuroblastoma.  Nonetheless, Nathan developed HAMA, which is an immune reponse negating 3F8, during his 2nd round of treatment.  After 6 months, HAMA subsided, he received a 3rd round and developed HAMA immediately.  3F8 is no longer considered an option for him.  Despite the shortened treatment, Nathan's scans continued to improve throughout.  You may want to ask about increased risk of HAMA.  That risk and its implications were not crystal clear to us after meeting with Dr. Kushner.

- Scott Ormsby

12-06-08 08:26 AM
Donna Ludwinski
Re: food and cancer
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Hi Scott,

Thanks for posting. We are retired AF, my husband was active duty when my son Erik was first dx in 1991, and retired in MN when he relapsed in 2005, and Champus/Tricare was our insurance both times. Found out by accident (doc dictated letter for disability determination to SSA immediately after relapse was confirmed) that Erik qualified for medical assistance (MN Medicaid) to be second payer because the diagnosis qualified Erik for SSI. I know it is different for every state, but worth checking into. Programs also vary by age.

What was your son Nathan's disease status before pursuing 3F8, ie after transplant? Did he have evidence of disease going into transplant? Did he do single or tandem transplant? Where did he do transplant? Was the MIBG transplant for frontline or relapse/refractory? Since he is on ABT-751 am I right assuming he is refractory?

Are you at Wright-Patt? Had child #2 there when husband Paul was at AFIT. Erik was dx 6 mo after Paul graduated from AFIT and stationed at Hanscom, so treated at Boston Children's/DFCI.

Best wishes to you Scott, and many prayers for Nathan!

 

12-06-08 09:01 AM
Donna Ludwinski
Re: food and cancer
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Ooops Miriam I goofed up this thread! I wanted to respond to your original question about food and cancer too--I really have to agree with Mark's comments. YES we eat good food and I DO occasionally put Erik on supplements that I have scrutinized for interactions with chemo--after talking with his doctor.

For example now he is on vitamin D supplements with his oral chemo regimen (okayed by his doctor and recommended by the doctor who came up with this combo--cis retinoic acid, celebrex, temozolomide, and etoposide in varying combinations each week for 3 month cycle.)

I will confess that after being at this cancer business since 1991 the thing that REALLY pushes my buttons is the non-stop stream of people coming into our lives pushing this or that supplement for his cure. ARGH. I have heard it all. I do look into them all. I try so hard to respond graciously but inside I want to SCREAM. When Erik was little he responded to McDonald's with "E-I-E-I-O" --he had never been to a restaurant with that name! His favorite foods when he was 3 was broccoli and oatmeal (I am not kidding!) My hobby in college ("fun" reading) was nutrition books. I love to cook from scratch and am conscientious about every ingredient. 

I do believe in eating the best food you can. But the assumption that bad food causes neuroblastoma and good food cures it is faulty. Children haven't lived long enough for there to be a link with diet causing neuroblastoma--especially since the highest incidence is in babies! By contrast eating the wrong things for 60 years can probably be linked to colon or other cancers.

Be wary of the supplement and vitamin pushers, and always check with your doctor. I check pubmed and it is surprising how many times you can find an in vitro study showing the supplement or vitamin encourages the growth of the neuroblastoma. Yikes.

Now I need advice in how not to explode when the umpteen millionth person calls me or emails me selling some supplement!!!!

I checked your site--what a beautiful family!!! I am praying for rapid fundraising, insurance issues resolved in your favor, and health and strength to your precious Menschi!   

 

01-26-09 07:28 AM
dsormsby
Re: food and cancer
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 Hi,

thanks for the info.  We have filled out all the paperwork as well and Nathan is not eligible for Medicaid or BCMH the Ohio insurance.

Nathan did the MIBG/BMT NANT study.  When Nathan was diagnosed about 90% of his skeleton was compromised with disease.  After induction chemo we wiped out more than 75% of it, but it was still extensive throughout.  The MIBG and transplant only took a small piece of the disease away.  We did our MIBG at CHOP and BMT at Cincinnati Children's.  At that point radiation did not make any sense.  That is when we found and went to Slone Kettering for 3F8 treatment.  We did a second transplant basically because Nathan was too strong.  In fact he got HAMA after only 1 1/2 rounds.   Then we went back on chemo for 6 months until HAMA went away.  Then we got one more round in and were done with 3F8.  From there we looked at all options to us. Basically his disease had not changed in almost a year.  Little widdling away but not much.  Radiaiton to the skull and shins only did a little.  We chose ABT-751 because IV fenretinide was not quite at a high enough dose.  And now 8 rounds later we are delighted with the results.  Basically he only has disease left in his legs and spine.  I know ABT-751 will treat all children differently. We are happy we are one of the lucky ones that it helps.He is refractory.

We are at Wright-Patt.  Scott is the Chief of Safety of the base now.  I am from Natick, MA near Hanscom.  Are you still in MA?

Rachel