TRIPLE POSITIVE GROUP
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We need to market this! Triple Positive Dark Chocolate Dipped Prunes! We will make millions!
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Kay I take a total of 1800 IU of D/D3. I did have low D diagnosed months before cancer diagnosis. Last time I tested I was slightly high. Initially my D was in the single digits. Do note that my doctors were the ones to tell me what I should be taking. (onc recommended the Calcium. PC recommended the additional D)
• calcium 1200
• Vitamin D 400 IU (included in calcium)
• Vitamin D3 1000 IU
• Vitamin D 400 IU (included in multivitamin)
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Thanks, just wanted to compare. My level was 12 when initially diagnosed in the middle of winter, but onc didn't want me to do anything during chemo and rads. Just got retested and it was 17, so I am taking 50000 IU of D2 (prescription) twice a week for six weeks and a multivitamin which has 1000 IU of D3. Once I am done the six weeks, I think they'll retest and hopefully I'll just stick with the multivitamin to keep it good. It seems to be the latest hot topic out there.
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Yes I started with the mega perscription dose too but that was all before I even knew I had cancer.
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Mine was down in the teens as well after chemo. I think I have a blood draw with my next Herceptin, and I also see my MO then. I have been on extra D for a while, I will be curious to see if it has gone up.
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SpecialK - We can fortify the prunes with vitamin D.0
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I love prunes but I have an extremely regular system so a bit concerned about eating prunes but guess I can get a few a day down. They were life savers for me during chemo....after #1 and the BIG C, they took care of that.
OMAZ: Thanks for the information on ER/PR....I'll have to check my path report because I think it only showed the percentages (68/73) which sound high to me.
SpecialK: Do you think the Femara is better than the Arimidex?
I'm on 2000 IUs of D3 each day. When I moved to NV from Florida (where they NEVER checked my D), my NV doctor immediately checked it and it was EXTREMELY low and I was on a massive dose for weeks and now stay on the 2000 daily. So many studies are now connecting low Vitamin D with breast cancer so why aren't all doctors checking it....
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ArleneA - my MO likes Femara better - he says his preference is based on study results showing a very marginal superiority - but enough that he chooses it. I would imagine that if my SE's were bad enough he would switch me to another. It is all I have taken so far. I am not having any serious problems though - just some achiness but I think some of that is Herceptin too. Also my ER is 96% - yikes! Don't remember my PR % offhand - it was not as high but somewhere around yours, I think in the 60's.
omaz - Triple Positive Dark Chocolate Dipped Prunes, now fortified with Vitamin D! Genius!
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Omaz: There are several really good articles in this link. The Zoledronic Acid drug sounds really promising to protect the bones and even reverse any bone loss. Thanks for posting...on my list for the PA tomorrow for my H#10.
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ArleneA - when was your vitamin D level checked last? I am asking because heart rhythm abnormalities are an indication of vitamin D toxicity.
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SpecialK: It was checked September 19th and the notes from the doctor said if it was low that I should increase my Vitamin D and the lab showed it was low and she did NOT increase the D so that is another reason I'm looking foe a new onco. We have to be one step ahead of the doctors which is pretty sad but I do plan to ask the PA tomorrow....AND my primary doctor skoffed off the low Vita D but HE is the one I saw before we left Florida and he NEVER checked Vitamin D. Melbourne isn't the best place for medical but hopefully the new onc will take me. My consult is December 6th. Maybe I'm too critical!
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ArleneA - I don't think you are too critical. My MO was the one who tested mine and said to take more D - it only makes sense, right? I just looked at the map of FL CA Specialists (my center) but you would have to take a drive to get there. I can ask my BIL - he is Chief of Gastro in Titusville - for an onc recommendation if you want me to.
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SpecialK: Yes, I'd appreciate you asking your BIL. My consult is with MIMA which is a big center here in Brevard. Guess I should just go up to Orlando to MD Anderson. Don't mind coming to Tampa either....nice trip and we can bring the RV and make a nice trip of it. I actually have a friend (I think I mentioned that to you) who is a PA at Moffitt (in the gastro dept).
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ArleneA - I will ask him this week. If he doesn't know my SIL (his wife) may be able to give me some names. I have no experience with MD Anderson, but you know I am a Moffitt fan. All of my docs here have moved through Moffitt at some point - BS, MO and PS.
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I like prunes too! I have a couple days of the big D after herceptin and then it goes to the other side. After my mastectomy, I was really constipated...thought I would need to go to the er. Awful. Now I really stress out because I have had fissures that will heal and then unheal. A colo rectal doc has me on a protocol that includes a couple of creams, lots of fiber and lots of water. It does help.
My D was low, and I have done the 50000 d2 also, and then the calcium/magnesium that I take has d3 in it. I was just tested so should have results next week.0 -
My Vit D levels were low as well - tested as part of my blood work before starting chemo. I too did the megadose for 6 weeks (I think?) and am now on 2000 IU per day - plus the D in my calcium and multi.
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Thanks SpecialK. I know you love Moffitt and I understand. One thing I tend to like about MD is that they are advocates of a lot of natural cures which I really like.
Wow, looks like the Vitamin D is big common link. Off for Herceptin #10 (guess they'll do it with the remnants of this cold) and to pick up prunes.
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Thanks for clearing up the prune issue...... as for Vit D I read that for prevention purposes you should be taking 5000iu a day of Vit D???? Anybody else read that???
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I have read lots of conflicting things about vitamin D. Too little is bad, too much is bad. Who knows?!
Arlene, good luck with the herceptin today. it will be over before you know it.
Forgive the slightly off-topic post...but with regards to prunes, I have an amazing and easy recipe that uses them and you would NEVER know. It's called Mock Chicken Marbella. Google it. It's chicken tenders in white wine, brown sugar, finely chopped prunes and bay leaves. Unbelieveably yummy. When all the flavors are stewing together in the oven...WOW!!! Serve hot for an elegant entree or serve cold for taking to luncheons. People are always wanting me to bring it to everything now! It's a rendition of the Silver Palate Cookbook's recipe that was a bit complex, so someone dummified it.
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Oh I love prunes I'm going to have to get some.
Kennylynne.....Thanks for the comments on the picture. I laugh when you comment on my cleavage, especially since it's my stomach fat that now my breasts. I was one of em who opted for a double mastectomy and DIEP done at the same time. Went under with my breasts and woke up to new breasts (with nipples even!) and a flatter tummy.
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Good Luck with the herceptin today Arlene.
I have to admit, I didnt think I would EVER get through this year. Chemo started the day after Thanksgiving last year and I am ending up with the port removal this year the day before Thanksgiving.
I think we are all so much stronger than we ever thought we'd be. Amazing what you can get through when you really have no other choice.
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nora - awesome that stomach fat is useful and gives you cleavage!!! You have had a full circle experience with the day after Thanksgiving date thing - I like that symmetry. We are all amazing and strong - I am thankful for all of us!
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SpecialK
Yes, so true. I asked my Oncologist 2 months ago, when could I have my port removed. He said, "There's no sense in keeping it in any longer than your last treatment, all it is...is trouble waiting to happen (blood clots etc) if it's not serving any other use" I was sooooooooo happy!!! I figured if he had any doubt in his mind he'd tell me to keep it in for awhile and take the "wait and see" approach. Knowing I started chemo the day after Thanksgiving last year, I just wanted this whole nightmare to come full circle and have it removed the day BEFORE Thanksgiving this year. So much to be thankful for!
I have a day after Thanksgiving tradition of making homemade noodles and using the turkey carcass and meat to make a delish turkey noodle dinner with mashed potatoes. It is so popular with my family that last year, I wasnt going to let chemo get the better of me. We got home about 5pm after chemo, I proceeded to make homemade noodles and my family loved it. I was so tired and not wanting to do it, but I wasn't going to let it get me down.
This year it will be a joy to make this traditional dinner for my family......with NO port! Yeahhh!
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nora - I found that port out was much easier than port in!
Question- Anyone know why some get Anastrozole and some get Letrozole (femara)?
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omaz - I think it is style points. My MO thought Femara had a slight edge on effectiveness based on study results, but I think it is similar to why some MO's do AC-TH and some do TCH.
nora - definitely celebrate your de-porting with the turkey noodle recipe!
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Hi Ladies, First Vit D level done before chemo was low @ 29. MO had me start 2000 iu daily. 2nd ck in August was 54. Went to my drug store to get more in Sept., but they only had the 5000 iu. So.... I took those bad boys... and my level last week was 78.(done last week) Pretty funny, they just called me a few minutes ago to let me know about that and my tumor markers. I told my MO about the increase last week @ my appt and asked him what happens if my level is too high. He told me it causes calcium deposits.(not good). Now I have to call them back( I always get freaked out when I see my oncs. tel# on my caller ID, and can't remember to ask any questions etc.) and see if he wants me to cont. on the 5000 or go back to 2000.
Never liked prunes, but now love them!!! Funny how BC changes so much in your diet. On that topic, I made Kale chips over the weekend. Delicious, even the kids and DH loved them.
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Special K ---love your idea!!! yummy!!!!
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Ok Bucky! How do you make Kale chips? Need that recipe, please.
Learned something today that most you ladies probably knew but I didn't as I always though Tamoxifen was just for premenopausal women but the onc told me that post women sometimes are given the Tamoxifen too because it is better tolerated than some of the others so if the Arimidex or others doesn't work, they switch you to the Tamoxifen. She personally likes the Tamoxifen but the Arimidex has a few % points advantage over the Tamox.
Now, I've heard you ladies mention so many times tumor markers and never knew what that was all about and she mentioned doing my bloodwork and including the D and CA---levels. I don't believe I have had those done before. If we see them going up, that is a concern.
Yikes, am I uninformed.
At the conclusion of Herceptin which should in early May, she will try for a PET scan and worse case CT Scans.
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Oh another thing. Asked onc about when to remove the port and she said right after my final Herceptin. I'm ready because this port hasn't been easy. The seatbelt even hurts!
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I hear ya Arlene! I never did get used to my port. It completely and totally disgusts me when I accidently bump it, I can feel it move around when I stretch, and like you said, the seatbelt even hurts!
Yes, it served a very important purpose and I was so happy to have it for my treatments but am I going to miss it? NO WAY!!!!
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