Supplements

[Beryl71]

Has anyone ever been given calciferol vitamin d and calcium tablets? My onc asked the GP to prescribe after I asked her if there were any supplements I should take. I read there were possible side effects from excess calcium in the urine . After about a month I started peeing a lot and drinking a lot and for a few days had symptoms my GP said sounded like an infection and gave me antibiotics. But I still felt uncomfortable, almost like something was stopping my bladder emptying properly. Anyway, I've stopped taking them and I'm fine now! I'd rather do without these problems when everything else is going well, and my blood appear to be fine anyway!

[Teddielottie]

Hello ! My onc asked my GP to prescribe Adcal -D3 . I have been on them for a couple of years now , but my onc nurse does check my calcium levels from my monthly bloods . I do drink and pee a lot but I drink lots of water ( as required for Ibrance) and decaf tea / decaf coffee . I received my new Ibrance tablets last month ( replacing the capsules ) but still choose to take with food . I wondered if they have changed the packaging since launch as mine are easy to pop out of the blister pack ... early on ladies on here commented on the packaging . Are you receiving the tablet form ?

Hope you have a lovely weekend ... nice to see rising temperatures here in the U.K. .... roll on Spring ! x 🌷

[Beryl71 in reply to Teddielottie]

I think they're the same, the new ones have come with a different name. My new ibrance are tablets and are in a pack with days on. X

[Hidden in reply to Teddielottie]

I was given the tablet form last month for the first time. I had been on capsules for two years but I know some ladies in the USA started on the tablets a while ago. I have never been told about decaf tea and coffee. They are all different with advice. Yes roll on Spring👍🌹🌻

[Teddielottie in reply to Hidden]

Hi Cheryl ! Just to explain the decaf tea and coffee are just my personal preferences, and not on medical advice . I did read that certain things can trigger hot flushes ( from Letrozole) , which include caffeine , spicy food and alcohol . I drink a lot of tea and coffee , as well as water ! I even have a bottle of water beside my bed at night ! That probably explains my bathroom visit during the night !! But it is good to drink lots , especially water , if taking Ibrance , to flush the toxins out of the liver . x

[Beryl71 in reply to Teddielottie]

I'm the same . I was advised to avoid caffeine so also have decaf and lots of herb teas and water. I usually do more than one bathroom visit at night and drink a good glass of water. X

[Hidden in reply to Teddielottie]

Hi, yes I drink lots of water also. It’s really difficult when you are in a deep,sleep,and woken by the urge to visit the loo. Assam tea is my downfall but I also drink Jasmin and flavoured herbal teas. So I guess that isn’t so bad. I also like spicy food so guess I will limit that now. Anything is worth trying. Take care x

[Southside25 in reply to Teddielottie]

i hate, hate, hate the new packaging. Four boxes to hold 21 pills that would fit in a child's hand. I have arthritis in my hands so once a month when I get my script, I sit at the kitchen table and remove all the pills using a box cutter. They then go into an old 3" pill bottle. Some of the packaging goes into recycling bin, but a lot of it goes in the garbage. What a stupid waste of resources, time and effort.

[Teddielottie in reply to Southside25]

Sorry you are struggling with the new Ibrance packaging , and especially if you have arthritis . These are our new Ibrance tablets/ packaging in the U.K. ... are they the same packaging as yours ? Our blister packs are easy to open ( maybe they have redesigned them following earlier complaints from ladies in the U.S. ) . x

[Southside25 in reply to Teddielottie]

Similar but different and in the US packages, definitely not easy to pop out especially with severely arthritic thumbs . The first time I tried, I was literally in tears after popping out three pills. Even if the pills are easy to pop out, what's the purpose of all the excessive packaging? What possible reason was there to change from one little plastic bottle to a pile of (mostly) non-recyclable garbage. For some reason, it just makes me furious.

[Teddielottie in reply to Southside25]

I’m sorry it’s made it more difficult for you . Our previous capsules were also in blister packs here ... we never had the plastic bottles here . I did read that the Ibrance tablets should be kept in the individual blister packs until use to protect them from moisture (do check with your pharmacist) . Maybe if enough people raise the difficult to open blister packs over there, they may alter them . Take care ! x

[blms]

I do not believe that taking calcium is generally good for us. Vitamin D on the other hand is critically important. You need to keep your level over 70 if you have MBC

[Beryl71 in reply to blms]

Thanks , I'll have a chat with my onc nurse. X

[Zebra2018]

Are you getting xgeva shots? My onc told me to take calcium because of the xgeva shutSima

[Beryl71 in reply to Zebra2018]

No, I'm just on ibrance and letrozole. What does Xgeva do?

[howsthis in reply to Zebra2018]

i was getting xgeva shots every month since 2017 when i was diagnosed with bone mets. three months ago my onc changed the shot to every three months. my mets appear to be stable in my scans and he says he doesn't want my bones to get too brittle. i also take an otc calcium and vitamin D3 supplement every day, recommended by my onc.

[Zebra2018]

It prevents from bone fractures. I have mbc to my neck and I used to get injections every 28 days for two years, now I am having it every three months

[Hidden]

I take Adcal with D3 every day as my calcium levels were very low when first diagnosed with MBC. I haven’t had a problem with it all all and I’m on a high dose. I’ve been taking it for 3 year. I have metastasis in most of my bones so needed to strengthen them with Denosumab injection every month also.

[stardust1965]

Hi BerylSorry you are feeling uncomfortable and I hope it starting to ease.

I’ve been on Ibrance, Letrozole and Zometa since my diagnosis over two years ago. As I understand it when on Zometa (or bone strengthens) you need to be taking Advil-D3 and my oncologist prescribed this.

Having said that, my calcium levels have always been fine so I don’t take it and they remain fine.

The reason I don’t take them is because I was struggling to fit them in with having to take thyroid meds first thing in the morning and then there are certain food types you should avoid before and after taking the calcium tablets (mainly healthy foods). Also they made me constipated so I stopped taking them. After a good few months I thought I should try again but I became constipated again (ahh the conversation we have here eh!). When I finally confessed this to my oncologist she said not to worry and not to take them as my blood test for calcium was always good. I also take vitamin D. Vicki

[Beryl71 in reply to stardust1965]

Yes, I've been a bit constipated too..think I'll speak to GP as she has all info about my levels and maybe I can get something else over the counter. It's never been suggested I have anything with ibrance and letrozole. I think the report says my bit d levels were 30, when Ilooked online that didn't look like a problem but someone on here said they should be higher. I have to say how I feel is important to me rather than all the analysis.

[stardust1965 in reply to Beryl71]

Hi BerylYes, it is important to feel well. You’ve got some good info here, especially from Sandra. I was wondering why you don’t get a “bone strengthened” like Zometa. It might be worth raising this with your oncologist at your next appointment. It helped bring my calcium levels down to normal when I was first diagnosed. I had hypoglycaemia then. It’s usually given every three months. I’d be interested to know what your onc says and also about the calcium. Vicki

[Beryl71 in reply to stardust1965]

I've spoken to my oncology nurse who says as long as I have a good and balanced diet I don't need supplements. Which is the blood reading which indicates calcium levels? I know one of the indicators returned to normal very quickly. There has never been any mention of needing bone strengthening. X

[stardust1965 in reply to Beryl71]

Sorry, I don’t know about the calcium blood tests. In the UK my onc just said they were fine. I would like to have a basic understanding of the blood test results and do occasionally look on-line but I think a medical degree is needed to understand it all!

[Beryl71 in reply to stardust1965]

Yes,my response too!

[Hidden]

Hi BerylI am on Ibrance, Letrozole and have Denosumab injections monthly. I have never been prescribed Calcium or vitamin d as my Onc says my levels are fine without them. I do take a liquid vit d over the winter months though.

Glad you are feeling better

Clare

[howsthis]

i take 600+D3 calcium supplements daily along with my prescribed meds. these are over the counter and recommended by my onc to help with bone health, since i have bone mets. they haven't given me any side effects, and i actually bought the chewables because i'm so tired of swallowing pills. you could ask your onc if this might be right for you.

[Rhenn]

Im currently on Xeloda, had 8 rounds of taxol IV. Since the first treatment I used supplements Vit D, B complex and coral calcium as well as some others feeding on how i was feeling. I have seen no adverse effects. Im only on Zomenta once per month. So far no negative effects of supplements. Drink lots of water to keep the kidneys healthy the amount of urine output will just be a,reflection of how much water you drink. Also remember everyone is different and you must monitor how you feel, always start off on the lowest dosage, you can even take supplements every other day, find out what works for you.

[Dragonfly2]

Hello Beryl! Sometimes the docs prescribe supplements because of a protocol...but it seems that you are doing just fine. What’s most important is to keep communication open with the ONC so that everyone is on the same page. Your symptoms and test results are a personal snapshot of of your cancer in your body...so always be clear about how the treatment therapy is affecting you. There’s a lot of info out there...it’s good to know what the big cancer organizations are researching and disseminating...so if I learn about something, I bring it to my ONC’s attentional she may not be aware of it.

Eating a good healthy diet, taking a multivitamin is always a good thing...but one must remember that the cancer therapy itself has a huge impact on normal metabolism..hence the need for extra hydration, the avoidance of caffeine (which would counteract the hydration), judicious use of alcohol, and certain supplements to help with what the meds are doing to your body.

Keep talking with your doctors...it’s in your best interest😊

[Beryl71 in reply to Dragonfly2]

Thanks, I do drink plenty and rarely have alcohol. Am very careful about diet. They keep saying my blood results are very good and I'm tolerating treatment extremely well with no side effects. It's just since having the vitamin tablets I had a problem. X

[Hidden]

Hi Carolyn,

Right after my diagnosis my oncologist prescribed Adcal D3, which I have been taking every day since 2018. I also take a vitamin D+ k2 spray. I have heard that hypercalcaemia is dangerous, so if that's what has happened to you have you been advised to stop the supplements? Your blood tests would check for excess calcium in your blood. I hope you are feeling better.

Sophie 😊

[Beryl71 in reply to Hidden]

Thanks am going to talk to gp.

[Hokie]

Hi, I’ve been taking calcium chews daily with vitamin D once weekly with Xgeva shots once every three months as I have extensive bone Mets. I had the shots every month for two years from the beginning of diagnosis in 2015. The letrozole does make my joints ache but I’ve gotten use to it. As the other ladies have said, I would check with your doc. I get my blood tested every 6 weeks, watching cancer markers and general testing of which my calcium is one. Take care

[Teddielottie]

Yes , I also prefer the new tablet over the capsule , and the blister pack I have here is easy to open , and I like that it has days of the week on it to monitor taking . I have just finished my first pack tonight and am happy too if packaging is all recyclable ! Hope you had a good weekend ... we had a lovely walk in the woods nearby and are enjoying milder weather here at present . Just need Boris to give us some good news in his address tomorrow about easing lockdown over the coming weeks /months .Take care! x

[Beryl71]

Thank you. My onc sends the report to GP and asked them to prescribe something. I know they have all my blood results so maybe I'll talk to them first. Noone mentioned my calcium levels at any point. I asked about vit d because everyone kept mentioning it. It was after that discussion that the prescription was given.

[Sunnydrinking]

Hi

As well as Xeloda/CAPE, I get six weekly Denosumab injections.

My Oncologist has prescribed daily Calcichew D3. I’ve been taking these for over two years with no problems.

I do, however, empty my bladder frequently but I drink loads of water with my wine... 🤣

Jo xx