CMF Question
Comments
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DesignerMom:
I'm just advising caution. There are a lot of wacky dietary theories out there, including some of those relating to Vitamin D. I went to a talk a few months back. The speaker told us that it was OK to take 30,000IU/day of D3. She also advises that one exposes their unprotected eyes daily to full sun as that is one of the main ways, according to her, to absorb Vitamin D. I was horrified to find that this woman is a registered dietitician. She had other bizarre theories also.
My fear is that if people are told to dismiss what they are told by the medical profession and to reject advice provided by the recent IOM report they may then turn to the advice provided by the likes of the dietician above.
Also note that the content you quoted does itself quote the IOM study. So why not just refer to the IOM study directly?
As for there not being a lot of profit in Vitamin D for the organizations that are promoting higher intakes than those advised by the IOM report, The Vitamin D Council profits from Vitamin D testing:
Vitamin D Council has partnered with ZRT Laboratory to make available an inexpensive, easy to use, in-home vitamin D testing kit. (Disclosure: A portion of the proceeds from the sale of each test will be donated to the Vitamin D Council by ZRT.)
The Vitamin D Council also promotes tanning bed as a way to get Vitamin D. They have links to Mercola Tanning Systems. Joseph Mercola is known as the promoter of all kinds of junk science.
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MaryNy- I certainly would never advocate dismissing medical caution. That's why I do try to find scientific evidence before I "jump" in to one of the numerous trends. I know if people are trying to get their D levels up, sunglasses block the sun's ability to increase levels. I try to still take care getting sun. I still always shade my face. I try to expose more skin. I do not go out at high noon and I only "sun" for less than 30 minutes. I would definitely never use a tanning bed as there have been lots of skin cancer links, and I think they have actually found it is not the right kind of UV light to stimulate vitamin D. I totally agree about Mercola an his junk science. A friend goes to lots of conventions and says he travels with his own entourage touting his brilliance. I know I had to ask my Onc to test my levels. She was more than willing and I think was even a bit alarmed how low they were. I am happy she is receptive to new articles and evidence about vitamin D and other things. She was happy to prescribe two courses of prescription D and we will recheck my levels after a sun-filled summer. I like the recommendation to have D levels checked twice a year: September when they will be highest and March when they will be lowest. Maybe I will coordinate the tests with my Mammo/US and MRI.
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My oncologist is also happy to test my levels and does encourage supplementation. In fact I had a Vitamin D test just yesterday as part of my routine follow up with my medical onc. I'm afraid I just get a bit cross when I hear people say that their doctors haven't a clue but will freely take advice from the Mercola types.
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WOW! This thread has been SO busy!
I want to welcome all the newbies, and say hello to everyone... I miss you gals!Also, those that have been here awhile... a question... how long has it been for you, and how frequently do you see your onc.?? Just wondering, since I am 4 years out, and still see my onc every 6 months. He says it's because I always have so many questions. Truth be told, I only make up questions, because I don't want to waste a trip all the way up there to Wilmington.
Hugs
Harley
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Hi Harley: For me it's been sixteen months since I finished chemo. I had my six-month follow up earlier this week with my medical oncologist and will go back again in another six months. In the interim, I will have follow up with my radiation oncologist and a mammogram. I think I will continue to have six-month follow ups until I reach the five-year mark as I'm on Tamoxifen and they need to monitor any SEs.
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Harley,
I saw my onc in March. Up until then, I was seeing him every 6 months. I will be 5 years out from diagnosis in November. At the March appointment, he told me he would see me once a year. He and the surgeon (who monitors the mammos, etc at Susan G. Komen center) have it arranged so that I see the onc and then 6 months later see the surgeon, so basically, I am still seeing SOMEBODY every 6 months. That's fine with me, even if I have emotional anxiety and meltdowns before I go every time. Maybe one of these days I will out grow that! :-)
Our summer has disappeared here and has been replaced with rainy days and cooler temps. I'm ready for sunshine again.
Thanks to all of you for your vitamin D input. I 've found it very interesting and really need to think about it a little more.
Patty, I hope you're having a good day today! Hang in there, gal!
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Thanks for the input about frequency of onc. visits.
I hope everyone has a great weekend.
Harley
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I just read the vitamin D guidelines. My onc has been monitoring my vitamin D levels, and maybe I will ask him to check them again when I see him next week... vitamin D also helps with depression.
Oh, Rita,
I also get all worked up before these follow up appts., but not for the same reason everyone else does. My doctors don't really do any tests, so I keep thinking that I could have a recurrence and NO ONE would know, til it is TOO LATE....
Hugs
Harley
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Harley: there seem to be different approaches between the doctors in how they monitor us. Some seem to do CAT and PET scans. Mine doesn't to those. Each time I visit her office, I'm given a two-page questionnaire on symptoms. I check yes or no on each one. It's quite detailed. Then the blood work always includes tests for cancer markers as well as all the other usual stuff.
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Harley,
My onc doesn't do the CAT or PET scans routinely either. I get the cancer marker tests through the bloodwork and then have the mammos at Susan G. Komen center. My oncologist doesn't think the excess radiation that's absorbed from these tests is worth it unless there are symtoms that warrant the scans.
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Mary, that is good, I guess. I don't get a questionare, and I don't like those things anyway. The 1st onc. I saw made me go down this list and rate my pain 1 to 10.... all these ridiculous questions....
But, my current onc. doesn't do any of that. He also does not do tumor markers; he says that he doesn't trust them. So... again HOW would he know if I had a recurrence. Makes me still scared about every pain I get. On the one hand, I worry about these pains, but on the other hand, I am scared to to my onc., because he might finally decide to run tests.... of course, by then, it would be too late.
Rita, at least you get the tumor markers. Heck, my onc. doesn't even order the breast mammograms for his patients; he leaves that up to your surgeon. I was getting breast MRIs but now my insurance won't pay for them. I got a mammogram this time.... stupid, cause the implants are going to burst, and the test isn't going to show a darn thing.... just two water balloons.
Thanks for the input....
Harley
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Harley- They just had news and recommendations about implants on the national news this week. Maybe that will force insurance to pay for things. They said women with implants need to have MRI every three years to make sure they are not leaking silicon.My friend's leaked and now she has silicon throughout her body and has lupus. They said implants were never intended to be permanent and need to be replaced every 5 to 10 years. It might be worth appealing to your insurance especially in light of this new evidence. By the way, my Onc doesn't believe in tumor markers either.
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My goodness! Just returned from a week in Myrtle Beach and it took me forever to catch up! For those who just checked in after awhile, I'm one of the newbies going through CMF. My 7th tx is Monday and the last on 7/18. It was wonderful to have a break so I could spend the week with my family at the beach. I feel great right now. We played golf twice at Beachwood and Myrtle Beach International West Course.
Also, the D3 discussion was very interesting. I personally take 4000 IU plus another 1000 with my calcium daily. My friend who is also a BC survivor and the wife of an ER physician takes 13,000 every week, plus 4000 IU daily for the prevention of BC. Her husband is convinced by the studies he's read that D3 is very effective in preventing recurrences of BC. I'm convinced as well. Also, older people are usually deficient in Vitamin D. It's good stuff!
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No, DesignerMom, I didn't get silicone implants, mine are saline.
golfergrandma,
So glad you were able to get away and have a nice little vacation!! That is interesting about vitamin D.
Hope everyone has a great weekend!
Harley
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golfer- Look at you! You are almost finished and blowing right through these treatments. I am so glad you are weathering it well.
Harley- I'm glad you don't have more decisions and screenings needed due to silicon.
patty- How are you doing??? Haven't heard from you in a while.
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No, I don't have to worry about silicone, but I DO still need to be screened for a local recurrence in the breast tissue, as my surgeon tells me that he can't be sure he took out ALL my breast tissue...
Hope everyone has a great weekend.
Harley
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Just a note. Had my tx today and am quite dizzy right now, but wanted everyone to know that my Vitamin D levels are 49! Onc said to continue doing what I'm doing. Can I assume the levels will rise after I finish tx? Anyway, it was good news.
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golfer- Glad you are weathering your next to last treatment (right?). Great news on your vitamin D levels. I have a feeling golfing out in the sunshine is helping as much as the supplements! Drink your fluids!
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Golfelrgrandma, I hope you're feeling better today. That's great news about the vitamin D level. YEA! I also think that golfing in the sun has probably helped to boost the counts. I hope the rest of the week is good for you. You are marking those treatments right off the calendar, gal! Hang in there.
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ritajean - Good to hear from you! Yes, just one more tx! Don't feel great today because I had a tx Monday. Remember, you said the 4th day was usually the worst? Well, it is! Hope to be back on the course in a few days. It's going to be 96 over the weekend so I won't be missing golf too much. How's your game going? Keep in touch.
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Hey golfergrandma...hang in there today. Tomorrow will be better! Hugs! My golf game comes and goes. I had a terrible time with my driver and even put it in "time out" for several weeks. Finally I went to a LPGA golf instructor and she taught me how to use it again. I was trying to do it all with my arms. Heaven knows my hips and bottom are large enough to do their part! I'm doing better with it. However, any day on the golf course is better than a day at work or a day at home alone. It won't be long and you'll be back into full swing again. I really wish you lived closer. I'd love to let you beat me in a round of golf! :-)
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Don't know if I would beat you, but it would be fun to play with you. I bought a new callaway driver last summer and I love it. Today, I bought a callaway #6 hybrid. Tried a demo the other day and liked it. I really need some refresher tips, but think I'll wait until next season -- think I'm lucky to just be out there right now! Feel a little better today. Have a happy and safe 4th!
Hope everyone has a happy 4th celebration!
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Just stopping in quickly to tell everyone to have a great July 4th weekend and holiday! I will have my oldest grandson for 8 days, beginning tomorrow, so I'm excited. We have lots of fun things planned for him to do during his stay and my golf and other activities are on hold while he is here. It's his week! Hugs to all of you.
Golfer, you are lucky just to still be out there on the course. I did the same thing during my chemo and rads. I was out there every day that I felt like it. I didn't worry about my game then. I just played. You will have plenty of time to worry about your game next year. I'm so glad you're still getting out there. Many stop doing some of their favorite activities during treatment, even on the better days, and I think they have more emotional problems. Good for you!
I'm off to get groceries...YUCK...not my favorite job, but I'm going to have to feed this growing boy!
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ritajean - You look much too young to have a grandchild! Aren't they fun though? We had a great time at the beach with our two (girl - 11; boy - 8). Have a great time next week with your sweetie! I think playing golf during tx has really helped my attitude and made the journey easier.
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Golfer.....I haveTHREE grandchildren, all boys. I'm taking the oldest two this summer for a special week all to themselves. I learned we all do better "one on one." Alex is 7, Grant is 5, and Evan is just 2. Alex is coming first since he is the oldest and I am really looking forward to our week together. I will get Grant the last week in July. That will be a fun week, too.
Keep up that good attitude. It is SO important!
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Happy 4th of July to all my CMF sisters! Wishing you and all your family many HAPPY smiles and memories for this holiday!!!
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ritajean - It is nicer to do one-on-one with your grandchildren. I took my daughter and granddaughter to New York last December to see the Christmas windows and take in a show -- it was wonderful! In fact, I had just been told I had BC and would be having surgery asap. Told the surgeon that I had made all the arrangements for our trip and would not have the surgery until my return. The surgery was scheduled for 3 days after we returned from NY!
Cabmom - Gave you been to Myrtle yet? If so, hope you had a good week. Our weather was perfect -- what luck!
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Hope everyone has a wonderful 4th of July!!
Harley
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golfergrandma, going next week and can't wait
! Glad you had perfect weather. 0 -
Hi everyone!
Just stopping by to say hello. I hope that everyone had a good July 4th weekend. My hubby and I drove to Gettsyburg on Saturday and I think everyone else in the US did too. We saw a bit but plan to come back in the fall when it is not so hot and not so crowded. But it made us re-read the Gettysburg Address...in under 300 words, Abraham Lincoln wrote a speech that will never be forgotten and he did this without a speechwriter. If you have a minute, take the time to re read the speech---it can make you grateful for this country.
Anyway, if you look at my "signature" you will see that it is 3 years since diagnosis and 2 years since I finished treatment. I am truly blessed to have come this far and it makes me appreciate you gals and all that you did for me in what was not my finest hour.
Have a great summer everyone and if there is anything I can do for any of you, just holler (or send an email if you don't like hollering).
(((((Hugs))))))
Mandy
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