Ibrance and supplements

[hopehope67]

I belong to those who are very careful in taking food supplements. My oncologist recommended not to take calcium and vitamin D because I have a high level of calcium in my blood. I mainly use vitamin C, and I try to compensate everything else from food. I am 69 years old and use Ibrance 100 + fulvestrant monthly and zometa every 3 months. I think I should be taking some nutritional supplements. I'm interested in what you use? Which form of vitamin C do you think is best? Thanks in advance on your answers.

[Silver126]

I think that supplements should be taken only when deficiency occurs. As regards vitamin D, I’m in a similar situation, but I was given it after bloodwork that showed a low level. High Calcium in oncological patients is caused by bone loss and vitamin D helps fix calcium in bones.

My oncologist told me to avoid vitamin C supplements , but I was on Xeloda, not Ibrance.

[atoth17]

Hello,

I only take supplements under the direction and supervision of a Naturopath who specializes in working with Oncology patients. When I was on Ibrance I was going to take supplements that would've worked against it and I was also taking too much Vitamin D as I wasn't deficient. My Oncologist knows I see her and appreciates that she helps me with that side of things, both keep an eye on all my labs so that I don't run the risk of taking too much of something. I hope this helps.

Allison

[Red1246 in reply to atoth17]

You’re so fortunate to have a naturopath who is knowledgeable about cancer meds and supplements that may harm. May i ask where you’re located?

[atoth17 in reply to Red1246]

I am in Washington state.

[Red1246 in reply to atoth17]

Thanks. I’m in California so wouldn’t be able to see yours. But perhaps (s)he would do a zoom call or face time?

[atoth17 in reply to Red1246]

I have only ever seen her on Zoom as I was diagnosed during Covid and had no other choice. Her office is about an hour away from me so one of these days I’ll see her in person. I will private message you her name and the clinic name.

[Red1246 in reply to atoth17]

Haven’t been on here in a while. Thanks so much - I’ll look for her info.

[Beryl71]

I have calcium and vitamin D with my zometa, two tablets daily. I also take omega 3 and a probiotic. But , yes you have to be careful of some supplements. I believe in a good diet, and exercise. I'm on same regime as you, just moved from letrozole to fulvestrant. Good luck.x

[Adele_Julia]

An absolute must for us is K2/D3 supplements. I have a top notch oncology nutritionist. Definitely get this. On Amazon search for K2 D3 . You can read up why too of course !

[Adele_Julia in reply to Adele_Julia]

Here is what I get .

K2 D3

[FloridaNYgirl in reply to Adele_Julia]

Thank you so much for this information! I have been taking D3, but was unaware of K2. So, I just ordered K2D3 supplement.

[Adele_Julia in reply to FloridaNYgirl]

Awesome. They are tiny and so easy to swallow. I take two a day at the same time. Blessings !

[wendle3007]

As well as Ibrance I am on denosumab so I am prescribed calcium and vitamin D as part of that treatment. I take turmeric to help with joint stiffness and during the last week of Ibrance I take Moringa, either the powder in food or as tea. I take this to help my blood results bounce back. Otherwise I follow a healthy balanced diet. And drink around 2 litres of fluid a day

[JKMS]

Hi I’m on lbrance and Letrozole and I take over 20 supplements a day and have done so pretty much since I was diagnosed back in 2020 (under the instruction of a nutritionalist/cancer coach). I take vit C three times a day and my one is from Cytoplan with bioflavonoids. I also take D3 with K2 (again Cytoplan) twice a day. Irritatingly a few months ago I was diagnosed with osteoporosis so of course calcium was mentioned. But the nutritionalist said to avoid calcium supplements from a GP as they drive oxidative stress and cancer so the ones I take are based on seaweed. My oncologist is aware of all of this but keeps a dignified silence (!) although I check any interactions with the pharmacy at the cancer centre. I think everyone’s journey and views differ but I’m a huge believer in an integrated approach to healthcare and healing. I have been NEAD for a few years and always said I have had very limited side effects which I put down, in part, to the approach…until I got osteoporosis😂 I have, however, refused meds for that and getting up to speed with a new disease!

[Ldonovan481 in reply to JKMS]

I was told to take Letrozole pill once per day for 5 years. I looked up sides effects and loss of bone mass is one. I have osteopenia. I will not take it. I was told they would “ watch” my bones. Well, how’s that ???? If I crack a bone it’s too late. I’m not taking it.

[Colacancer]

I had to check with the nutritionist for all supplements. Sooo many interference with Ibrance. And wow are you tough. Im 52 Mets. And am on 75mg Ibrance cause it just drained me of life force. I'm single parent to severely autistic. I do take turkey tail mushrooms. 8 a day. With 2 week breaks. I do oregano oil on my feet one week. Garlic oil on my feet the next and Olive Leaf the next I also take glutathione and chlorella. And green juices everyday. Zero sugar. Even fruit. All sugar feeds cancer. Since diagnosis in March stage 4 I have shrunk. And stabilized it. I do Barbara O'Neil s protocol. It ain't easy 6 weeks greens and beans and seeds. No wheat, no meat no dairy no sugar. And intermittent fasting. Sometimes 2 days a week. At least one. Recently stopped the diet and felt like crap. Got depressed. Shocking how much diet and exercise change everything. Good luck to you. Speak with your team about nutritionist and alternative doc to check all interference. Copper is a big on also quercetin. Of course they're both super healthy for you but Ibrance has a lot of interference..

[TammyCross]

I am with you and surprised by the oncology nutritionist who recommends 52 supplements. When I had surgery for ONJ, the periodontist who cut out parts of my jaw and a few teeth recommended turmeric curcumin to speed healing. I went on it then off it then on it then off it, depending on what I read about turmeric and cancer. MSK has a web page on supplements and cancer and their recommendation is no.

Finally, I was referred to an oncology nutritionist who works with the breast oncology department. Except for D3, when it is measured as low (sometimes it is, sometimes it isn't -- probably because I am outside a lot in the summer), she recommends getting nutrition from food, not supplements. Her argument is that supplements are not regulated by the FDA, a huge mistake. You often don't know how much you are getting. I recently read results of a study in New England Journal of Medicine of what is actually in many brands of one supplement. Some had way more than they claimed (one had 400 times the dose they claimed), some very little. These were reputable brands.

She also said some common supplements have side effects from large doses. One I wanted to take hurts the liver over time. As I have said in other postings, the supplements that help with joint and muscle pain from AIs also help cancer cells grow. I have been NED/NEAD for 3 of the four years I have been treated for mbc -- without supplements. I believe it is really a matter of how our bodies, our cancers, respond to the oncology treatments. One should have a healthy diet that makes on feel good, but going overboard with difficult regimes probably is not what is keeping the cancer in check.

Routinely, I been told to take calcium, even before mbc. I remind the docs that I have a history of kidney stones, so they realize I already have too much calcium.

Here is something from Mount Sinai on turmeric:

Turmeric in food is considered safe. However, taking large amounts of turmeric and curcumin in supplement form for long periods of time may cause stomach upset and, in extreme cases, ulcers. People who have gallstones or obstruction of the bile passages should talk to their doctor before taking turmeric.

Because turmeric may act like a blood thinner, you should stop taking it at least 2 weeks before surgery. Tell your doctor and surgeon that you have been taking turmeric.

...Exercise, if one can, does so much for us.

[Best521 in reply to TammyCross]

Same here I rely on healthy diet and exercise. No supersize me supplements. Worked with the registered dietician at my cancer center and continue to use their recipes. Some of us have slow moving indolent cancers and some of us have more aggressive fast moving cancers regardless of which medical treatments or dietary supplements we use. I have even heard cancer researchers speculate that the supplements may drive the cancer cell growth. If there is a credible rigorous scientific study proving a supplement will work I am open, otherwise there are so many other cutting edge well researched medical treatments available for use rather than playing around with the unknown, unproven, unregulated supplement market.

[Denfer]

Every time I start taking calcium my level goes too high. I’m now just taking a multivitamin and my last bloodwork was in the normal range.

[hopehope67 in reply to Denfer]

Thank you for your reply. Which multivitamins do you use?

[Denfer in reply to hopehope67]

Just an older women’s formula from Costco

[op1986]

I take a few supplements…vitamin D, biotin, zinc, and molybdenum. All recommended by a cancer nutritionist and okayed by oncologist. I also take a Turkey Tail mushroom extract. My diet is whole food plant based. No sugar, wheat, dairy, oils, and low in grains. I cook with turmeric, oregano, garlic, onions, ginger and other anti-cancer herbs and spices.

For awhile I was on a two supplement regime for osteopenia. Bone density improved and now I am using exercise for bone health.

I work with a great nutritionist on Zoom. She has made the dietary transition easy and sustainable

[hopehope67]

Thank you all for the very helpful answers. It is obvious that more or less all of us use nutritional supplements very carefully. For some of you, the fact that you work with good nutritionists is a relief. A healthy diet and daily exercise with careful use of nutritional supplements help. I have been using Sodium Ascorbate 3 times a day for years and now I would change that. Which vitamin C do you use?