Calling all TNs
Comments
-
Lisa I think you can find conflicting info on anything and varying opinions as well across medical doctors. Just like some Oncs will write Metformin off label while others won't. For me I go by what I feel is needed to keep my health at optimum levels, research and a nod from the medical team. Some people may find it harder to keep a good D level and others might be able to maintain with little supplementation. Cocker makes some great points too and I read a similar article that had the same data she mentioned. As Cocker pointed out taking food sources into account will help gauge how much you need. I think your plan sounds fine Lisa and you discussing it with your Onc to find what is best for you is a great approach. I bet the Oncs are kept busier now that patients are becoming so internet savvy and proactive in their health quest! Knowledge is power.
A quick note about multivitamins. Many are created with a level of more than 100% of the recommended daily allowance. So a supplement + a multi may in fact have less daily value than a multi that has higher than 100% values and includes that supplement. So everything should also be considered in relationship to the whole equation of what you are taking as part of a regimen. If you take protein powders also scan the label for vitamin info.
0 -
Eileen, that's great that your Onc has a partnership approach with you in your supplements too! He offered suggestions on what to do according to your specific labs/values. Eating bananas sounds easy enough! Oh, and thanks for the site information.
Speaking of nutrition sites, there is one that I love - it has the nutrition labels for every food, including whole foods. So let's say you want a plain baked potato or plain sweet potato. You can see the nutrition label for the fat/carbs/sugar and also the glycemic load. I'm posting here for everyone: http://nutritiondata.self.com
Enter the food name in the top field and it takes you to a list of options to choose from. When I was first dx'd I used this site a lot to create meal plans. It was really helpful in learning how much of a particular item was considered one serving as well.
Off to get some hot tea of some sort going! Ladies, have a great day!
0 -
My bride takes 6,000 iu's per day of Vitamin D3. Her level increased from 17 at Dx to 53 last count (quite a while ago. I'd be willing to bet it's quite a bit higher now). Her MO said, regarding D3, that "You can indeed get too much of a good thing. 2,000 iu's a day is considered a 'normal dose. But, the counts don't lie, so it would appear to me that you're not getting too much of a good thing." I read somewhere that to reach a toxic level you would have to take in excess of 10,000 units/day for at least 3 months straight, and even then you still might not reach toxic levels. Oh, and by the way, they check her calcium levels at every visit as part of her routine blood work. Calcium was very slightly elevated ONCE but has been in the normal range every time.
0 -
Hi All,
eileenpg and I got to meet today for the first time! We got together for lunch and had a wonderful time sharing our experiences. It was great to meet another sista! Eileen is on the right (in the scarf) and I'm on the left.
0 -
Oh my gosh Kay you both look great! How fun for you both
0 -
It was great meeting another TNBC. We are a small very exclusive group. I would have perferred not to have joined this club. Yet, I have met the most wonderful people who have enriched my life. Especially on this board.0 -
What an awesome photo. You two look so good!! Whatever it is you both are doing, keeping doing it!
0 -
you guys look so beautiful!
0 -
How nice to meet someone from here in person!!
Both look terrific!! 0 -
Eileen & Simple - two gorgeous looking ladies. Glad you met and had lunch together. Awesome pic.
0 -
saw the photo and then forgot that i originally came on to ask if anyone here is on Zometa?
I am seeing onc on tuesday, and she mentioned Zometa last time I saw her. She suggested I ask my dentist his opinion, but I am looking for your opinions.
Thanks!
0 -
It's holiday weekend here in NZ and we are having the most gorgeous weather so I am soaking up that wonderful D3 that you cannot overdose on. Will be your turn soon.
0 -
AnotherNYCGirl Do you know the reason Zometa was mentioned to you.Are you having dental problems at all. Before the commencement of my chemo I had to go to the dentist to get my teeth checked in case of infection. Luckily nothing was needed. Is this why your Onco mentioned Zometa for you.
0 -
Eileen and Kay, smiling right back at ya! Beautiful ladies. Let's ALL meet...how about New Zealand lol...how 'bout that cocker?
Wow looked back and we are from all over the country...and world! I see 2 other New Yorkers? Anothernyc and veruka, you both are NYC I believe? I'm central ny
0 -
Lisa=I'm in on New Zealand. Just let me finish radiation without any my interruptions in my treatment. I have to keep my WBC count up.0 -
Cocker Span, - the zometa is supposed to be good for bone loss, but also to help prevent bone mets i think.
Lisa, - yes, I'm 'downstate' here in the city. New Zealand would be great!
But in the mean time, let me know when/if you and any of our other 'sistas' are in the NYC area!! It would be so nice to get together!! 0 -
That's fine with me girls. I have a big house and the weather is glorious right now. We have summer from December 1st through to April. You would all be very welcome.
0 -
Eileen and Simple, Beautiful photo! So cool that you two got to meet! How did you both happen to be at the same place??Cocker, I had my first infusion of Zometa in November, and will have my second one in May - so every 6 months for at least two years. My MO prescribed this as a preventative for bone mets (adds 3% benefit). Before it could be given, I first had to get a dental "OK" form completed by my dentist - just to make sure that I had no dental issues that could possibly contribute to a serious and rare side effect in the jaw (sorry, can't remember the name of the condition but begins with an "o").
There is a separate Zometa thread, and although some have had SEs with the infusions, mine was completely uneventful. I had no side effects at all, and the infusion itself was 30 minutes. Plus, there's the added benefit of it being a good bone strengthening drug in general. The benefit is based on studies for post menopausal women only at this point.
0 -
MomMom could the word you are looking for be osteonecrosis which could possibly cause complications to the jaw bone or increase a chance of hypercalcemia (high calcium levels associated with your teeth).
Zometa (zelodronic acid) is a support medication to prevent this happening and is to treat high levels of calcium caused by cancer or other conditions and is also used as cancer therapy. The reason you have to see a dentist is to make sure you have no caries (tooth decay) in the teeth which could cause infection such as numbness, loose teeth or any gum or bone disease in the jaw. Your MO is a wise doctor to consider this for you and to take preventative measures. You are one person who should take your MO's advice on Vitamin D. I am so glad you are not having any side effects. Onwards and upwards love.
0 -
Hi Lisa- yup, am in nyc as well!
Is zometa generally indicated for premenopausal women as well?
0 -
How wonderful you both got to meet! I take it here in Florida? Where are you from in TN?
0 -
Cocker Spaniel (love them by the way, we've had 3 dear, sweet ones in our lives), Yes, thank you, osteonecrosis is just the word I was looking for. Actually I was too lazy to leave the post I'd started to look it up:-), and Yes, your teeth have to be in good shape to take the drug because of that small, but real, risk. I feel so good about taking it, if it can add anything against recurrence!Veruka, I have a friend in her mid 40's who is also TN and goes to my MO. She wouldn't prescribe it for her because she's premenopausal, presumably because studies have only been done for post menopausal women.
My MO also recommended, after I asked her about it, that I take an 81 mg baby aspirin daily to prevent against recurrence.
0 -
I've put the question about aspirin in my list of questions for my mo visit next month. And also zometa
With all the talk about vit d I thought id go out for a walk on this unusually sunny day...but it's so cold that there's not much skin showing to absorb the Rays, but it felt great anyway. I took a mindfulness walk-no headphones, just being aware of all my senses, the feel of the sun (on my forehead at least), the sound of my boots crunching and squeaking in the snow, the sound of the chickadees, the sight of the sun sparkling on the snow, the smell of the crisp cold air, the sound and feel of my heart beating in rhythm with my foot steps, the quiet yet energizing solitude.
0 -
Lisa you can still benefit with Vit D even in the winter especially if you go out and walk when the sun is at it's highest point at around noon. You won't get as much as in the summer of course but then again how many people walk around nude in the sun even then. A healthy diet in winter time will keep you on track. Coupled with your idyllic description of your walk which sounded utterly beautiful I would much rather do that than pop a pill. There is something about those winter days that beats summer hands down. Here in NZ it is so hot this summer we are unable to stay in the sun longer than a few minutes anyway and the picture I had in my mind of your post gave even me in NZ a sense of wellbeing.
It's good you are discussing aspirin with your doc next time you see him. He will be able to discuss any benefits there may be for you.
0 -
Hi Everyone - AlexaP is in the fitness forums with me, and she was dx'd with TNBC at 31 years of age, in 1996 and has been healthy ever since. Thought you all would want to know of a long-term survivor who is currently on the forums, and also to give some additional strength and hope to you younger ladies who have been dx'd.
0 -
When you think about it Lisa it's quite comical and contradictory really. The Docs' tell you burn time at present is 6 mins, then they say don't sit out in the sun because of melanoma, then it's you need 20 mins in the sun to absorb Vit D. So you might get a good store of Vit D but you are burnt to buggery.
0 -
Cocker= My RO told me to wear sun screen on my face.He said it was ok to keep my legs and arms exposed to the sun. Not for a long time. He said. We can take care of any skin condition you get on your legs and arms. Protect your face. He is pretty adamant about supplement and vitamins. I always go with a list of questions. It is kinda funny when he gets so upset. He makes me do home work and look up stuff on the internet. The only problem I have with him is he drinks 6 + gatoraids a day. Monday is Doctor Day. My question is "Is all that Gatoraid good for you" I am going to google any side effect to gatoraid. Ha Ha and tell him tomorrow.
0 -
Eileen your post made me laugh. Gatorade is an excellent fluid replacement if you are doing strenuous exercise like training or running a marathon but, it has a large amount of sodium and sugar in it which is not good for you. I should imagine he is pretty wired up though with 6+ per day. It's really just an energy drink for those much needed moments which most of us won't need and it could increase your heart rate. We had a locum once who used to look up things on the internet as opposed to learning it at med school and being able to fully inform his patients himself. None of the staff would go to him if they had a problem in case he looked it up so he didn't last long lol. My daughter's friend used to take a lot of gatorade and she suffered with terrible headaches and nausea and vomiting when she tried to stop it. So that should tell us something about it.
I can't understand your RO saying it's ok to get the sun on your arms and legs but not your face. NZ has one of the highest rates of skin cancer from the sun in the world and you can still get melanoma's on your legs and arms which can spread to the lymph nodes. Melanoma's have tentacles that spread out and burrow deeply in the skin and then can spread to your lymph nodes especially in the groin. You may not notice a mole on your legs changing. Whereas a BCC (basal cell carcinoma) does not spread but still needs to be removed. You should slip, slap slop all over if you intend to go in the sun and regularly keep applying sun screen of at least 30+. I would be interested to know if your findings on the internet match up to his lol.
0 -
Thanks for responses re zometa. Glad it is working well for you! I dont know yet if dentist says ok for me. WIll see.
Lisa, - Your walk sounds cold but wonderful!!
0 -
Cocker= I looked up Gatoraid .Can you drink too much Yes, I am ready to tell him tomorrow. He is so dramatic when he answers me . I absolutley love him though. He was very concerned when I had so much fluid (edema) from third spacing. He gave me lots of great idea on how to reduce it without doing any more medications. Compression clothing and wrapping my entire arm(fingers included.) It did work. So far down 14 lbs. I will ask him further about Vit D tomorrow. By the way. I already bought him 2 six packs of Gatoraid as a thank you gift.Going to ask him about Zometa too.
0
