Calling all TNs
Comments
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Doreen, that was a great article. CockerSpaniel's second sentence said it so well. Also, so many things can assist in getting cancer into remission. I just read a small excerpt from a book that I'm donating to GoodWill today, about how cancer survivors with a support system and getting the 'type of support' they need have been shown to be able to build stronger immune systems. I think her husband has shown his love in great depths, and gave her the support she needed, in the way she needed, which was accompanying her to treatments and dressing up, laughing and dancing with her. I also liked how they mentioned they were hoping that them dressing up helped others at chemo. They have responded to difficult challenges in a very creative and uplifting way, and hopefully a way that will inspire someone else to do the same.
Hope everyone has a great week! Prayers for good news to continue for everyone and for a cure for breast cancer.
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Here's an interesting article fromt the Wall Street Journal on the possible reason why exercise helps so much in the survival of triple negative BC.
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Hi Ladies, I think I need a pocket party :-( I've had a very sore hip for a month but assumed it was just my inflamatory arthritis. I saw my rheumatologist a month ago, who gave me an intramuscular prednisone shot. This is only the second shot I've had but found immediate relief for all my sore bones, joints- except for my hip. I finally mustered the courage to call my MO and she was on holidays but they actually phoned her. I had a hip x ray last Thursday (of course no results yet) and have to go this Thursday for a complete bone scan and a CT scan. I've also had some unprovoked pain in my LX breast so an ultra sound and mammogram are booked for 2 weeks. I'm really hoping this is just bursitis but I was told if the hip x ray showed nothing the bone scan would be cancelled. Trying to stay positive-other than this hip pain (and sore breast) I feel great. But scared.
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Slv,Will be thinking of you and keeping you in my prayers for a completely good result. Is there any way you can get your US and mammogram scheduled any earlier?
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Thank you MomMom, they really tried but are completely booked. I'm more worried about my hip as this is a new (intense) pain. My breast has always been sore to touch, now it is sore by itself, but I was diagnosed with breast Lymphedema in a Nov. and to me it feels like a cyst. Staying positive...it's bursitis...it's bursitis...it's bursitis.
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Yes, it's bursistis! Stay positive and do something nice for yourself.0 -
SLV= BURSITIS REPEAT BURSITIS!!!!!0 -
SLV....just let us know the date and time of the pocket party. I'm in.....and keeping my fingers crossed for great results.
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I am rsvping for the party! IT IS BURSITIS, YAY for bursitis!!
Will keep you in prayer
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Thank you my great, supportive sisters! I have the bone scan and CT scan (they are trying to get the ct scan the same day) this Thursday but my MO is still on holidays so at this point I'm not sure when I'll get the results. I'm ready for a wait, I have a mammogram and ultrasound booked for February 5 and my mo only has clinics on wed, so I'm thinking I'll get results feb 11. I appreciate the positive thoughts and prayers, thank you. Bursitis...bursitis!
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Hello all, I know the topic of Vitamin D is frequented here, can those of us taking a vitamin suppliment just list i and how much? Just polling the peeps.
As for me,
Vitamin D, 400 , going to bump way up to 5000 daily
Multivitamin
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Meadow, make sure it is D3 and my PCP told me that 2000 is standard. Have you had your levels checked?
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I take 5000 units Vitamin D3a day. I get my blood levels checked once per year - my aim is to be at the maximum number!
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Thanks SLV, my Onc's PA saw me today for my check up, she ordered a Vit D panel so I will know next time. I am still being seen every 3 mo. In my chart it said my levels were 40, that was in 2012, before I had BC. She said she takes 5000 a day, that seems so high, so I was wanting to know what you all are taking. I dont want to take too much, if there can be too much
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Adagio so I see you take 5000, hmmm. Interesting!
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I had levels checked 9 months after dx. Started with a 12. Supplemented between 2,000-4,000 and a year later at 42. It takes a while to build up. I decided to increase to 6,000 i.u. a day and now I am at 90. I've been getting it checked about annually.
This is what I take - all are in the whole food form (excluding the D3)
Vitamin D3 - Liquid - Source Naturals Brand
Vitamin C (one daily dose)
MultiVitamin (not to exceed 100% of daily values)
Probiotic (85 billion) cultures, (but that is for 3 total a day as advised on bottle, and I only take one a day per my Onc's suggestion, so maybe I'm only getting 1/3 of 85 billion cultures)
Baby Aspirin
Vitamin K intermittently
Metformin
And in my smoothies is a Raw Protein Powder which has a bit of nutrients in that product
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thanks so much Inspired, you seem so healthy!
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also take 5000iu of vit d3. Just had blood work and will see pcp next wed to see levels etc. was at 44 last time checked but that was a while ago. Hoping higher no
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My last check was 42 as well, i'm on the fence on taking anything.
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regarding the Taxol toes/feet. I'm 2 years out. About 6 months ago I went for a series of electro acupuncture and the neuropathy improved but hit a plateau about three month of weekly treatments. Expensive but my guy also did regular acupuncture after he wired up my on the emotional meridians. I always left feel good at worst and feeling like I was floating peacefully in the world. Powerful stuff with a good practitionrt
I read an article recently about surgery that reconnects severed hands (like in an industrial accident. The article noted that after two years of reconnecting the hands, the peripheral nerves began to regenerate. Now I have some hope that this won't be permanent!
Hugs,
Peggy
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Slv58, saying prayers and in your pocket for the wait. Bursitis and this terrible condition called getting O-L-D...
Please keep us posted.0 -
Thank you Curlyq1974! I'm going to wear my pants with the extra big pockets and I'll have dome snacks in there for everyone!
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just got call from nurse at pcp office and she told me that my vit d level was 92.8 and thought I should back off to 3000iuday (from 5000). I told her that I wanted it high due to research regarding vit d and bc recurrance. She said normal was 30-100. She said we could talk about it next week further when I have my visit. There is also 700iu of vit d in my calcium so that brings it to 5700iu with supplements and not including vit from sunshine(not much this time of year) or food
Inspiredbydolce, I know you have lots of research on this subject. Can you please share an evidence based article? I know you've shared in the past but I i have to go back to find it or go through search which I will do now. Yours was 90 and you and your mo were happy with that. Is there risk of too high? Should I back off and check it again? Or keep at the same amt and also have it checked again to make sure not going over 100? In the summer I would need less due to more sunshine (usually!
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inspired, found your jan 9posting about vit d and also this artivle. Maybe I'll decrease to 5000every other day(I have a whole full bottle left) for maintenance rather than buying another bottle for 3000 or 4000i
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Hi Lisa,
First off, you are rockin' the house with that 92.8! Good for your girlfriend!
This is what I have read. From several members on these forums who were TNBC, their Oncs felt something about 67 was adequate. I believe in higher though, and I will go as high as I can in the normal range. In fact, I thought I was doing excellent with a 90, and now that you have a 92.8, I'm thinking I can get there too.
I have read higher than normal has some toxicity to it, but have always heard it was hard to really get to a level of toxicity. But for you and I, perhaps reaching that toxicity level is more readily doable since we have improved our numbers so much. Now My Onc, just relayed to me (through his Assistant) that all numbers were great. He didn't specifically comment on the D. However, he has also always told me "you can't make healthy healthier" and all we need is normal and not to focus on a number. #Knows me well Now, some things to consider. People who work out heavy may benefit from additional Vitamin C. Therefore, if you are an exerciser, especially vigorous exerciser where your shirt shows sweat stains, you might want to stay near the higher end, of course with your team's approval. I exercise heavy, to where my shirt is wet through, down to my stomach, so I believe in the power of the C.
I myself would not take vitamin C as an every other day thing, because I would worry about forgetting, and then going 2 days without, etc. I believe the body processes it on a daily basis and have read it helps to convert food into usable nutrients and energy. However, you are probably not in danger of depletion, by doing so, because D is stored.
Also, I have heard on The Doctors show, that if you have sunshine that day, your body probably does not need a supplement that day. So if I'm out the whole day running errands or on the patio I will perhaps miss it then. But I find that suggestion a bit flaky, as I thought to make D your body had to be 60% uncovered, and if I'm running errands, I probably have more than that covered.
Also, I don't know how much is required to maintain. I will also drop down to 4,000 i.u. and get mine checked in April when I see my PCP. This will mean 4 months at a reduced level. It will be interesting to see if it stayed the same or not.
Because my D was 12 and the risk of a low D and some theories about developing TNBC, I'm going to keep it as sky high as I can. I read one time on the internet, this Onc decided to do his own research on his own patients over the past long period of time who had TNBC and compare to D levels. He found a correlation. While that is not a scientific study by the standards of the industry, I zeroed it on it, because I felt that certainly could have been a component to some degree in my diagnosis. If I can find his article again I will forward to you offline.
Lisa, just an additional note. My breast surgeon, who is also the Chief Surgeon at a hospital out here, I just saw him in Dec for my annual checkup. He reminded me that while Spring/Summer is coming up to remember that after having one malignant cancer, my risk was slightly higher for additional ones, to watch my sun exposure and be sure to apply sunscreen. Now my Onc actually told me moderation is okay, but BS was far more pro-active on the subtle increase in risk of sun exposure.
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inspired=My RO almost had a heart attack when I told him all the vitamins and herbal supplements I was taken. He does not believe in them.None to minimal alcohol. So I now have 4 glasses of wine a week at most. He was fine with that. I have drank wine with dinner for years. I now drink seltzer. He gave me a website to go to research what I am taking. It is NCCIH. You may want to check it out. I have looked up a few of the vitamins. I am going to continue to take 2000 units of D. My level the first time checked was 42. I would like to get higher. I live in FL. Lots of sun. I wear sun screen on face and always wear a hat. I am continuing my Calcium with D 1200 units and fish oil.. He has me eat a banana a day and take a teaspoon of milk of magnesium. My magnesium was low last blood check. He is a strong advocate of healthy eating. Told me to read labels on low fat foods. They are full of carbs,sugar,and salt. I eat so little fat. I can eat regular cottage cheese. I am going to check with my MO in Baltimore when I go back in Feb for my check up. See what he says. You are a wealth of info.
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Ladies please be careful on your intake of vitamin D. If you take too much (above the normal daily ratio of 600 iu) it will cause a high level build up of calcium in your blood. This is called hypercalcemia and will affect your kidneys, your appetite and will also cause gut problems such as nausea and vomiting. Also an excess of Vitamin D WILL cause osteoporosis and hardening of your arteries. If you have a healthy diet, i.e, a diet rich in fatty acids e.g. oily fish, Omega 3, plenty of leafy green vegetables and plenty of fruit your body will make it's own vitamin D. It is only in the winter/spring where you may need a supplement but only by taking one cod liver oil tablet per day. In the summer just 20 minutes in the sun is sufficient to keep your vitamin D at normal levels. Please don't place yourself at risk by trying to ingest a higher level of vitamin D than that prescribed by your doctor if he/she feels you need it.
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cocker=My RO would love you. I think I will take your advise and his.
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http://www.vitamindcouncil.org/further-topics/i-tested-my-vitamin-d-level-what-do-my-results-mean/
Thanks cocker and inspired, conflicting information. I just read that levels over 150 can be toxic but under100 are still in safe range. I have absolutely none of the sx of hypercalcemia. I will cut back to 5000iu every other day and discuss with pcp next week and maybe test again in a month or so. There is NO sun here this time of year and if there is we are bundled up and not much is getting to the skin level. Here is a link from the vitdcouncil
And make sure you read the link on the bottom of the article on how to get the proper amt of vit d my body needs. This helped me a lot to understand. So much to learn about our health and bodies, I try to absorb as much as I can but there is just so much, too much
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Thank you all for this wealth of information. And Kayb,the info on one brand being more readily absorbed is good info. As always, Inspired, thank you. And Cocker, I have wondered about the calcium overload possibility, thanks for the info. To all who shared your info, thanks so much!
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