Frustrated

pink05

Hello everyone,

I am feeling somwhat frustrated tonight. I took my dad to his chemo appt. today. He had to see his onc. for a follow-up visit beforehand. I mentioned a couple of supplements that I would like my dad to take and even brought some literature with me to give them more info. on the supplements. One was Maitake D-fraction and the other is IP-6 w/Inositol. I have done a lot of research on these, and have heard that they can help with boosting the immune system as well as enhancing the benefits of chemo and reducing side effects from chemo. Well, first, the onc's assistant told me that it's not a good idea for my dad to take any supplements while on chemo. Then the onc said that "to tell you the truth, there is no scientific evidence that these work." I kept persisting saying that all I wanted to know was if these supplements would interact with my dad's chemo. Finally, the onc. said they wouldn't. That was all I needed to know. It seems like these doctors are so against using any alternative treatments. I mean, if it doesn't interact with the chemo, why not give it a shot? Also, there have been studies done on mice to find out the effectiveness of some supplements and some of the studies have proven that they do inhibit tumor growth. Sloan-Kettering is actually beginning trials with humans using some supplements. These supplements must be somewhat effective if cancer hospitals are doing research on them. I wish we could work with a doctor that is open minded to complementary treatments. Anyway, just needed to vent about that.

Also, I have a question: What is the standard protocol for the frequency of CAT scans during treatment? My dad's onc seems to want to do scans every two months. Is that really necessary? I thought standard protocol is every 3 months? My dad has only completed 3 cycles of chemo. I am assuming he wants to see if the chemo regimen my dad is on is working, but wouldn't you need to be on the regimen for a significant amount of time before determining the effectiveness of it? Does anyone have any thoughts on this? Sorry for the long posting, I'm just annoyed.

Thanks,

-Lee-

rthornton

Hi Lee.

When I started chemotherapy last summer, I also started taking some high potency multivitamins and a few other supplements. I talked to the nutritionist at my doctor's office, showed her the label from the multivitamins, and she told me to stay away from them. She suggested taking Centrum, as anything with a greater quantity of antioxidants (especially vitamin E) would interfere with the effectiveness of the chemotherapy. Well, I'd read several books written by credible people who made the opposite claim - that antioxidants would enhance the effectiveness of chemotherapy and also protect me from some of the ravaging effects of the toxins. Deciding that the nutritionist was far too conservative about supplements to be credible, and rather disturbed by the fact that she seriously resembles Big Bird, I chose to ignore her advice and I took the supplements during my treatment. Three months/six chemo cycles later I was in complete remission. I don't know what effects, if any, the supplements had on my response to treatment, but in the end I felt okay with my decision. I don't know why some doctors (and their nutritionists) are so opposed to supplementation ... especially if, after being pressed, they will admit that there is no harm in using the supplements. Weird, isn't it?

I have been on an irregular schedule for PET/CT scans. I had one before surgery, one after three months of treatment, one two months later, and then one 4.5 months later. I guess the frequency of scans depends on the oncologist.

Good luck and best wishes!

Rodney

AuthorUnknown

I think that these "scientific" doctors are just afraid of any alternative medicine because if it works, then they are out of job. This is standard tactic. They protect their jobs.

NanD

Let's look at it from the doctor's point of view. Many people are marketing supplements to get rich. They are the ones protecting their jobs by making some very wild and false claims. Many such products have been quite harmful so the doctors can't blindly endorse untested ideas. In this climate, it is difficult to jump on every nutritional bandwagon that comes along. Good doctore won't support all the internet educated patients ideas just to make them happy. They are trying to practice scientifically sound medicine. However, the good oncologists do encourage those things that have been proven to be safe and effective. It is called evidence based medicine. I for one would not feel good about an oncologist who did not caution me about putting too much faith in the latest supplement. However he or she should be knowledgeable about nutrition and supplements. They all recommend the standard anti oxidants (as found in centrum!) and calcium and there is even some evidence about NSAIDS and aspirin being effective in prevention and recurrence of colon cancer. Hang in there and realize that if there were magic bullets, the good docs would be the first to know and jump on it.

jana11

I think you got a good spectrum of responses to the nutrition issue. My onc just smiled and giggled when I told him I was taking some chinese herbs. He said go ahead without even looking! Then I went to anesthesia before my a surgery and she opened the bottle, looked inside, and told me not to take it one week before surgery. Very weird to look at it - it looks like dirt!!

The CT scans, once stable I got a CT every 3 months. When there was a question of any problems, I got it every 2 months. Maybe the onc wants to make sure what he is giving is working. Talk to the doc about the frequency - see what they say.

It is OK to be annoyed. Try to remember the goal - helping your dad. Stay focused... you are a GREAT advocate. jana

rthornton

NanD said:

Let's look at it from the doctor's point of view. Many people are marketing supplements to get rich. They are the ones protecting their jobs by making some very wild and false claims. Many such products have been quite harmful so the doctors can't blindly endorse untested ideas. In this climate, it is difficult to jump on every nutritional bandwagon that comes along. Good doctore won't support all the internet educated patients ideas just to make them happy. They are trying to practice scientifically sound medicine. However, the good oncologists do encourage those things that have been proven to be safe and effective. It is called evidence based medicine. I for one would not feel good about an oncologist who did not caution me about putting too much faith in the latest supplement. However he or she should be knowledgeable about nutrition and supplements. They all recommend the standard anti oxidants (as found in centrum!) and calcium and there is even some evidence about NSAIDS and aspirin being effective in prevention and recurrence of colon cancer. Hang in there and realize that if there were magic bullets, the good docs would be the first to know and jump on it.

Those are good points. I should clarify that I consulted with a naturopathic MD before deciding what supplements I would take. And I did that because I noticed, when I talked to employees at health food stores, that a fair amount of the information I received from them was contradictory. And then sometimes they would say "oh, if you are in chemotherapy, you HAVE to try this ..." which was suspicious. So there is a danger involved, so it's good to find credible sources that you trust. There were several reasons I stopped trusting my oncologist's nutritionist. She started pushing sugary and high-fat foods on me after I told her that my appetite was very suppressed (anything to keep me from losing weight, I guess). Then again, maybe if I'd taken her advice I woulnd't have lost 40 pounds during chemotherapy (every single ounce I have now gained back ... 20 pounds more than I wanted to regain!).

Rodney

Unknown

When Bert did his chemotherapy, his oncologist agreed with a multi-vitamin and asparin therapy but asked him to please discontinue other vitamins high in antioxidants as he believed they would interfere with the effectiveness of chemotherapy. He didn't "outlaw" them, just passed along his thoughts and experience of working in many clinical trials and he is the head of colon cancer research at the USC/Norris Cancer Center. The moment Bert was done with chemo, he was encouraged to resume all his vitamin taking.

As for scans, the first year and a half after surgery and while on chemo, he was scanned every three months via PET/CT. After that, it went to every six months via CT only, followed by PET if something looked suspecious. Now that he is three years post surgery and two years post chemo, scans are done every year, colonoscopy every year, and doctor appointments every six months.

Monika