Pre-vetting a discussion for my oncologist's consideration

Posted by ajh5285 @ajh5285, May 23 4:21pm

I'm interested in opinions regarding this article, before asking my oncologist for his assessment. My experience so far with 2 different oncologists is that they are not very interested or very convincing in their knowledge of supplementation (or any kind of interaction) with chemotherapy.

Do any of you find that this summary is inaccurate in any way?
https://www.everydayhealth.com/hs/exocrine-pancreatic-insufficiency/vitamins-for-epi/#:~:text=EPI%20typically%20leads%20to%20a,the%20essential%20nutrients%20you%20need.&text=Exocrine%20pancreatic%20insufficiency%20(EPI)%20is,enzymes%20needed%20for%20proper%20digestion.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I have always taken a D3 supplement. My oncologist was watching many things, but did not pull labs looking at vitamin levels. My IM Dr does. I did not see her for at least a year while doing chemo and surgeries but I am back with her now and the first thing we addressed was vitamins-at her request. I am on creon but also 2 OTC supplements. Perhaps try an appt with your internal medicine Dr?

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@ajh5285 Is there an integrative medicine physician or practice near you? They are in a good position to advise you on your questions.

I don’t have pancreatic cancer. I did have endometrial cancer and asked my oncologist to refer me to Integrative Medicine. I’ve been working with the integrative physician and her staff on nutrition and supplements (I don’t take many as she has advised to get most of vitamins and minerals from my diet). She also has advised me on exercise, including yoga, acupuncture, and massage.

My integrative medicine physician is an MD who specialized in gynecological cancers and then moved into integrative medicine. This isn’t the same as homeopathic or naturopathic.

Here is a link from Mayo Clinic that explains integrative medicine.

Integrative Medicine and Health:

https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

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@naturegirl5

@ajh5285 Is there an integrative medicine physician or practice near you? They are in a good position to advise you on your questions.

I don’t have pancreatic cancer. I did have endometrial cancer and asked my oncologist to refer me to Integrative Medicine. I’ve been working with the integrative physician and her staff on nutrition and supplements (I don’t take many as she has advised to get most of vitamins and minerals from my diet). She also has advised me on exercise, including yoga, acupuncture, and massage.

My integrative medicine physician is an MD who specialized in gynecological cancers and then moved into integrative medicine. This isn’t the same as homeopathic or naturopathic.

Here is a link from Mayo Clinic that explains integrative medicine.

Integrative Medicine and Health:

https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

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Thanks for the suggestion. I have recently changed to an oncologist who claims an interest in integrative medicine. There are still many areas, however, that have no clear-cut answers, so it all seems like trial-and-error.

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@gamaryanne

I have always taken a D3 supplement. My oncologist was watching many things, but did not pull labs looking at vitamin levels. My IM Dr does. I did not see her for at least a year while doing chemo and surgeries but I am back with her now and the first thing we addressed was vitamins-at her request. I am on creon but also 2 OTC supplements. Perhaps try an appt with your internal medicine Dr?

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The nearby university hospital system that I belong to does not have the system yours does. For instance, my "gatekeeper" primary care doc is a family practitioner, and I fear my case is outside her range of expertise.
In other words, I wind up looking for suggestions elsewhere. That is where these discussions give me information to run past my oncologist.

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@ajh5285 , Is there a pharmacist or nutritionist or dietician associated w/ your oncologist or treatment center?

After Whipple, I began taking a custom vitamin regimen recommended by my primary care doc, and was feeling quite healthy.

After my recurrence, I began chemo on Abraxane + Gemcitabine + Cisplatin. I had the pharmacist at my center check on interactions, and got the following, very informative response:

For interactions between the extensive supplement list and your chemotherapy,
B vitamin components (includes pyroxidine (B6), thiamin (B1), riboflavin (B2),
folate (B9), niacin (B3), pantothenic acid (B5)and biotin (B7) are OK.

In general, any vitamins or minerals listed at 100% or less of daily recommended
requirements are OK.

Avoid any component listed as an antioxidant – this has the potential of
reducing the efficacy of cisplatin. These include high levels of
Vitamin E, Vitamin C, coenzyme Q, tumeric, and many others. In addition
many of these components can add to any bleeding risk, and should be held
if your platelets are low (good possibility for any one on gemcitabine,
cisplatin and Abraxane).

An additional concern is interaction with enzymes that break down chemotherapy.
This does not apply to cisplatin or gemcitabine, but does affect Abraxane.
Abraxane is broken down and eliminated from the body with the activity of
enzymes 2C8 and 3A4. Quercitin for example inhibits the activity of both
these enzymes and could lead to a buildup of the drug (and higher side effects)
in your body.

I would recommend holding supplement containing any of these components at levels
greater than 100% while receiving gemcitabine, cisplatin, Abraxane.

Obviously those are specific to my body and my chemo and my supplement recipe, but are good additional data for your investigation and question list.

There's also a phone app called "About Herbs" and an associated website from MSKCC at https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs that has a lot of good information. It was recommended to me by my oncologist's PA.

I hope these help, and I hope you can share any more details you learn. All the best to you!

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Make sure that your oncologist has 5 stars for oncology. There is no qualification specifically for integrative medicine so it is important to know what your physician does in clinical practice.

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@gardenlady1116

Make sure that your oncologist has 5 stars for oncology. There is no qualification specifically for integrative medicine so it is important to know what your physician does in clinical practice.

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He is not an integrative physician; his primary interest appears to be research, although he is part of the medical oncology department at my local university hospital.
Where would I find the ***** system that rates oncology practices?

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Just try Googling the practice name and take a look at the reviews you find. There are various physician rating sites so you can take a look at that. The hospital will have information about the experience and training of the doctor. If your primary care doctor is really good, your doctor could be a good source of information. Researching doctors is not very easy but checking multiple sources should give you a good idea about your doctor.

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Having had chemo treatments myself and cared for my husband during his, my experience is that oncologists do not want you on any supplements unless they specifically approve it. Apparently, many supplements can interfere with chemo, and that tends to be their main focus of oncologists. My husband had chemo prior to surgery, so this was not an issue for him, but after the Whipple he was told he needed to take AQUADEK's for the rest of his life, and he has been taking it for the past 5+ years. Recently, he was hospitalized for a stroke, during which lab results showed that his vitamin D level was below normal, so apparently he should take more. Despite this finding, when he was getting discharged, the medication changes stated that he should discontinue his vitamins and minerals. When I questioned this change, the doctor's response was "well, those are just vitamins. They are not important, but if he wants to he can take them." (Apparently, he was not given these vitamins, even though I supplied them on account of the hospital pharmacy not carrying.) Even when I tried to explain to this "doctor" why it IS important for my husband to take these vitamins, he kept saying that it's his choice to take IF he wants to. this was one of several reminders in the past years that we have to be actively involved in our healthcare. Keep asking questions until you find the answers that makes sense for your situation!

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@marianna13

Having had chemo treatments myself and cared for my husband during his, my experience is that oncologists do not want you on any supplements unless they specifically approve it. Apparently, many supplements can interfere with chemo, and that tends to be their main focus of oncologists. My husband had chemo prior to surgery, so this was not an issue for him, but after the Whipple he was told he needed to take AQUADEK's for the rest of his life, and he has been taking it for the past 5+ years. Recently, he was hospitalized for a stroke, during which lab results showed that his vitamin D level was below normal, so apparently he should take more. Despite this finding, when he was getting discharged, the medication changes stated that he should discontinue his vitamins and minerals. When I questioned this change, the doctor's response was "well, those are just vitamins. They are not important, but if he wants to he can take them." (Apparently, he was not given these vitamins, even though I supplied them on account of the hospital pharmacy not carrying.) Even when I tried to explain to this "doctor" why it IS important for my husband to take these vitamins, he kept saying that it's his choice to take IF he wants to. this was one of several reminders in the past years that we have to be actively involved in our healthcare. Keep asking questions until you find the answers that makes sense for your situation!

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Thank you for sharing your experience. It's pretty dismal isn't it.

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