Stage II w/Lymph Node Involvement
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Hi all,
My husband pops supplements in my mouth at night--he gives me a turmeric capsule, an aspirin, garlic tablet. Additionally I take evening primrose oil and melatonin in the evening to help me sleep.
Leggy--I take a calcium tablet that has D3 in it already to avoid another pill. I'm also on thyroid meds, so I take thyroid pills in the morning and calcium at dinnertime. I just leave the pill bottle next to the place where I usually sit so I don't forget. Calcium is extra important if you're on tamoxifen or an AI.
I'm also on a bunch of prescription meds, so I feel like I'm popping a lot of pills...
Jo Anne
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D3 here.
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LeggyJ~ Do you take your Thyroid meds with your tamoxifen...I am on arimidex and I am also on thryroid meds.. so I am wondering can I take them together and then take my calcium and d3, fishoil etc. at lunch and bedtime. I think I need a secretary to remind me when to take my meds along with everything else I have on my mind these days. Thanks for your imput!!
Enjoy your day!
Warmly,
Balsie~
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Hi everyone... Just wanted to add that my vitamin D test came back today (along with all yearly bloodwork) All was good except for the vitamin D. Dr. recommended 600 units. Does that sound right? I haven't been to the store yet, so I wasn't sure. Sounded like a lot, but if that helps to keep me healthy, no problem.
Jo
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Hey Balsie, I take my thyroid meds. as soon as I wake up, then about an hour or more later I take the tamoxifen, and Ibuprofen. Now that I'm thinking about this, if calcium shouldn't be taken, within four hours of the thyroid meds. should I be taking the tamoxifen an hour later????? Now I'm all confused. Where's that secretary, when we need him?
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Hey Joanne, for what it's worth, on the oncotype chart 1-3 nodes and node negative have a very similar prognosis...that gives me A LOT of peace!
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Hi again,
Jo Anneand Balsie, I couldn't find anything about thyroid meds./and tamoxifen, so I emailed my Onc. and I'll let you know what he says.
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Cookiegal -- is this oncotype chart something one can find on line? Nice to know that 1 - 3 (I had 1) is the same as zero! Somehow, though, I still would have been happier with zero
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Hello,
Leggy and Balsie--I'm on arimidex, which I take with a whole bunch of other prescription drugs including thyroid meds. Doc never warned me about anything--let me know what you find out, Leggy.
Cookiegal--Thanks for the info about node neg and node positive prognosis. I feel much better for now. I have 3 involved nodes (which was unexpected with my smallish tumor). Two only had micrometasteses. One doc said that the micros "hardly count," but my onc says he's treating me like stage III because "one more node and I'd be there." My prognosis is pretty darn good, but guarded due to the lymph involvement. I have a tendency to be a nervous Nellie, and I have to stop obsessing about this stuff, but it's hard!
MamaQ-I see that you're from Illinois. I grew up in Palatine (Chicago area) and went to college in Normal (Illinois State). I've been in CA since 1981.
Everyone-I went for my brain MRI today. It was an unsettling, but doable, experience. Now is the wait for results--we all know how that is. Think good thoughts for me!
Jo Anne
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if you are node pos there is an extra page on the oncotype which shows node pos info. I should point out it is from one study with less than 350 people. That being said, the phone rep pointed out that 1-3's distant recurrance was only slightly higher than node neg, within the margin of error (which could be a few percentage points). I have no idea if more nodes goes with a higher oncotype or not.
All things being equal a low oncotype seems more of a specific prediction than node neg or pos. I really hope more node-etts get the test soon, it is good information to have.
I do realize not all oncs feel great basing a decision on the fairly small data base for this, but since I was inclined not to do chemo I am hoping it was an accurate tool. I realize I am pushing the envelope here, even a year or two ago I probably would have done chemo for sure.
It's distressing to have nodes with any size tumor, but when it is small you expect to be node negative, especially if you have a clean pet scan. It was a real let down.
Oh well, life goes on!
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I never got an onco-type score but I believe that's because I was ER and PR negative... so I guess (for me) it's irrelavant but I'm still interested! I guess I can google it on line to learn more.
Cheers,
Lilah
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CookieGal... I like that info too. It makes me feel hopeful. I had 1 micrometastisis node, so one onc said that it's considered negative. But I still chose to do chemo, but we will never know if it helped or not. I think you know what I mean.
JoAnne... I'm a Joanne too. But I usually sign everything Jo around here. But that's mostly because that's what most people call me. I live about a half an hour from Palatine. But I wish I was in CA like you. It's freezing here and we are expecting 4-8 inces tomorrow. Yippee! LOL I constantly ask my husband, "why don't we live somewhere warmer?" Maybe someday. (((Dream)))
Jo
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Lilah...the reason you didn't get an onco score was actually because you were HER2 positive. I was also. It is automatic chemo, regardless of your node status. Its an aggressive stinker but Herceptin has changed its world!!
Back from my annual visit with my Gyn who is also somewhat holistic and into supplements..My regimen consists of a Multiple, Iodine (on synthroid), fish oil, VIt D (mega doses rt now..I should be testing about 80 and I am at 37), Oncsgs, DIM, and I do take Tamox, Boniva daily (study) and of course Synthroid. I take synthroid at bedtime because I have to take Boniva on an empty stomach in AM...pain..lol I also take Melatonin for sleep..just started it so we will see how it works. Just thought I would share it..as I have said before, the most important of all..VIT D!
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Yeah that's what I thought about the onco score (had researched it months ago when I first saw the word). From what I read, onco score is for ER+ cancers to determine best course of treatment. Yeah I knew I would have to have chemo before the SNB; they said I had to because of the HER2+ --- ah well. It is what it is. I am grateful that Herceptin exists. And btw the movie about the discovery of Herceptin that you recommended (I believe it was you Warrior) is sitting in my "to watch" pile
I love Harry Connick Jr!Lilah
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Hi JoAnne, Balsie, Jaelsne, and all girls interested, My Onc. forwarded my question, regarding Thyroid med. and Tamoxifen to the Onc. pharmacist. He said I can take the Tamoxifen with my thyroid meds. if I want to, with no problems. Good news!
I don't remember my Onc. telling me anything about my oncotype, but I was dazed and confused, when I had my first few appts. with him. One of my friends is a nurse, and she went with me the first visit, so she could take notes, and she was of little help later. Now thanks to chemo. I don't remember a lot of things, though.
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Thanks LeggyJ for the info on thyroid meds with tamoxifin. So I will assume that it is ok to take it with arimidex as well. like I say we girls need secretaries to help us organize our schedule of pill taking.
Enjoy life!
Balsie~
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Thanks, Leggy, for the drug interaction (or lack of interaction) info. I've started reading about my drug side effects, and several of them mention light-headedness, dizziness, etc. Wonder if that's why I have had a couple recent fainting spells.
The good news is that the fainting is NOT due to a brain tumor! My onc called with my brain MRI results today--normal. Incidentally, my bone density test was also normal.
That's all my news except to mention that Dr. Servan-Schreiber (The Anticancer Diet) is going to speak at UCLA on Tuesday night. I'm planning to go to his lecture--if anyone else lives in the Los Angeles area, you may want to consider hearing him. I heard that his lectures are interesting and motivating.
Jo Anne
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Jaelsne!! WOW...GREAT GREAT NEWS!! You must be able to breathe again...I have heard a lot about that dr and his anticancer diet...Let us know what you learn, if you go to the talk. What is this basis of the diet?? I don't have the book....
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Jo Anne!!!!! WOOO HOOOOO!!!! Glad to hear that your brain is ok
Maybe it is the drugs making you faint? Have you discussed it with your doctor? Anyway, it's good to have the worst possible reason ruled out.Cheers,
Lilah
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PS Lilah..Like your new pic!! SOOO Cute!
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Thanks Warrior!
It's pre-chemo... when my hair grows back I'll take a new one!xo
Lilah
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Nice to have some GOOD NEWS, Jo Anne!!! Yahoo! My Levothroid prescription has 0 refills left and I just emailed my GP, asking if I can have a blood test for my thyroid, and Vit.D. I'm still tired all the time, and it's been a year, since I finished treatments. Course, I'm getting older (53) and have a very physical job, and diagnosed degenerative arthritis.....no wonder I'm tired. TGIF!
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Thanks to everyone who wrote about my good MRI results. I thought they'd be okay, but any scan is scary these days...
Warrior, I only glanced through Servan-Shrieber's book. I just ordered it yesterday via Amazon. I'm not sure that it includes anything new, but it has a good synopsis of the nutrition and other holistic methods of keeping the cancer under control. The author doesn't encourage this as a replacement for the normal medical care, of course. I'll let you know what he says in his lecture. I know that he can also be found on youtube.
Lilah,
It's possible that the drugs are making me faint. It could also be due to a possible heart condition, so I made an appointment with a cardiologist for next week. I also asked my onc if it could be due to just plain old fatigue--just about any activity saps my energy--and he said that was possible, too. Then again, sometimes it happens a few hours after I have a glass of wine, so maybe it's a wine allergy... Who knows... But I'm glad it's not a brain tumor!
Leggy,
I'm fatigued, too, but I've only been out of treatment since November. I hope you can get to the bottom of your fatigue. My thyroid and Vitamin D tests were both okay.
Have a good weekend, everyone!
Jo Anne
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Jaelsne..It takes time for the body to HEAL...its a process and you just finished in November. What was your VItamin D? My dr said it should be near 80,,,the normal range is 20-100 so make sure you are in the higher part of range!!
Hope lecture was good.
Tomorrow is my 2 year anniversary of diagnosis....Keepin busy and spending a great family day with hubby and my three wonderful kiddies!!
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Warrior... I think that's a perfect way to spend the day. Because as a mom, I'm sure that they are one of the biggest reasons that you fought this awful disease. For a while after chemo, people would still offer to drive my kids to their extra curricular activities. I would tell them how much I had appreciated the offer, but I had made this fight so that I would be there for those moments, and I wasn't going to miss them if I could help it. One friend even laughed and said I guess that's why you were at a soccer game 5 days after your mastectomy.
Well, I know it will be a rollercoaster of a day. So, try to stay confident.
jo
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HI Girls...had a great day as I knew I would! Lunch, the movie, Blindside and now ice cream! Yum..
Jo..5 days after a mastectomy...wow, now thats determination. I sadly admit for awhile I spent too much time in my bedroom hiding behind my laptop in the beginning. Eventually, I came out to continue the roles God gave me, but I will assure you it took longer than 5 days! Kudos, my friend!
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Aw Warrior what a great day! Bless you
I loved BLIND SIDE -- a heartfelt movie for sure.Lilah
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Warrior,
Thanks for the reminder that it takes time to heal. I read somewhere on the internet that we need to allow ourselves approximately the same amount of time to heal as the amount of time we were in treatment. I guess I rushed into "wellness," thinking that now that I'm "done" things will quickly get back to normal. I didn't realize just how depleted I have been, both physically and mentally.
I'm not sure what my vitamin D levels were, just that my onc said they were normal. I'll ask what the test results actually were.
I'm seeing Servan-Schreiber on Tuesday, and I'll give you folks a report. We're lucky to have good lectures in the LA area--I saw Susan Love speak a couple of months ago, and I thought she was terrific.
And congratulations, Warrior, on your two year anniversary! Keep those anniversaries coming!
Jo Anne
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Ditto those congrats for Warrior! How does it look/feel two years out anyway? I am still focusing on getting through this first year!
Lilah
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Warrior... Don't be fooled, I came home and went back to bed. And I too spent a lot of time on the laptop, researching bc. I think I caused myself alot more worry, at that time, then was good for me. Anyways, have a happy anniversary.
JoAnne... I'm very interested in finding out what you find out.
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