Calling all TNs
Comments
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TifJ, I need to loose more than you and know how hard it is. Unfortunately chemo has left me with pretty severe inflamatory arthritis, but I did start yoga in July and really love it. I started with chair yoga classes-graduated to gentle yoga and now I'm in basic yoga. I always feel so much better after class, as if it stimulates a lot of endorphins-if you can't find a gentle or chair yoga class, there are many on YouTube, but I find an actual class is so much better. Walking is always a good way to start a program as well.
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Tifj: Congrats on being 4 years out! My best advice -- and it really works -- is to walk, briskly. Do short walks first and build up gradually until you are doing to 5 km / 3 miles, 4-5 times a week. Use http://www.treksee.com/ to plan out your route. Phone apps like Runkeeper can also track your progress.
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Simple... let me know if you head over to the other coast! I work in Naples and live in Estero
K
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I was recently diagnosed with triple negative high grade 3 stage 3B breast cancer. This cancer is a secondary cancer caused by the radiation treatment I had 25 years ago for Hodgkins Lymphoma. I'm maxed out on radiation. Certain chemotherapy, puts me at high risk of leukemia. My colon also has suspicious areas that are being closely watched. Is there anyone else out there with a secondary TNBC?
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I've been good and have walked a 1/2 hr each day at work during lunch, it's 1.8 miles. Today it was 23 degrees and I did it, so I was pretty proud of myself!
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Soigne,
Hi - I read your post in the other forum, and posted a survivor story for you. I do believe you will be strong enough for your daughter. She and her courage will give you inspiration, fight and determination. You'll get through this and we'll all be here to help as you need it. You went through a lot 25 years ago, and I'm confident you are every bit the strong person you were back then. I hope your daughter is getting through treatment okay as well. The special bond a Mother and Daughter have will help each of you through treatment.
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I like the gentle yoga idea. I live in a small town and there are no yoga classes available- so I will check out You Tube! Thanks Shari!
Luah- I don"t mind walking, but my mid back starts hurting shortly after starting! I think I just need to do it more and the pain will diminish!
Now, if it would just warm up-I hate walking in the extreme cold!
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Hi Everyone!
Just posting that I had my 3 year checkup yesterday and received some results yesterday and the result of the lab results today. All numbers normal!
My Onc graduated me to 6-month appointments, but I asked if him we could do 4 months this first extension, and then 6 months thereafter, and he said yes. He is a big part of my survivorship, we have a close relationship, and if I see him at 4 months, instead of 6 months, it means I will probably stick to my regimen harder, knowing I have to report in sooner.
)An interesting note today regarding vitamin D3.
Nine months after I was dx'd with bc I had my D checked and it was at 12. I went on D3 supplements, and about 9 months later asked for an updated D3 check. It was then 42. Yesterday, I asked my Onc for an updated test, as it had been about a year. I'm now at 90!
There was a recent question in this forum regarding amounts - this is what I did:
I didn't start off with 10,000 units 1 day a week and maintenance dose the other days of the week, which is an option when deficient. I felt it would be too hard on the kidneys/liver. So I started supplementing originally with 2,000 units and then gradually increased it, first to 4,000 a day, and then for about 6 months now I have been doing 6,000 units a day.
Now that I'm at 90, I'll go into maintenance mode and take 4,000 units daily. I take it every night before bed. I found that if I took it in the AM it made me sleepy. Not sure why.
Have a great weekend everyone!
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Inspired=Great news. I had my Vit D level check it was 42. I bought supplements but,they all had soy in them. I know being TNBC we did not have the estrogen which can be a result of soy. However, I do not want any BC in my future. What brand are you taking?Also, I started Tumeric supplements yesterday. Thanks.
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yea inspired! Congratulations on the good check up! You always do such a good job of motivating is, do what ever you need to keep yourself motivated and on track. I take 5000iu of vit d daily. Last time level checked it was 48 about 6 months ago. Will be having blood work next week for appt with pcp so it will be checked again. What does your MO want it to be at? I've heard 60-90. I take vitacost brand. Also taking turmeric, doctors best brand, "Best curcumin c3 complex". It has to have black pepper in it to be most effective I've heard and read. The pain in my feet has definitely gotten better since starting, or maybe it's the glucosamine/chondriotin or maybe it's just time. Now your metformin? How long is your MO saying to take it? I'm taking 850mg 2xday and if I remember correctly, you're doing the same right? No side effects for me so that's good. Actually some constipation but I think its could be from the calcium
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All my supplements are from Garden of Life Raw Organic Vitamins, with the exception of D3. For D3, I have always used Source Naturals Liquid. I really like the liquid, as I can adjust the dose so easily. The D3 is sourced as cholecalciferol. You can order it from Amazon.
My MO does not have a preference with regard to the level - he often tells me "you can't make healthy healthier", and we often have a good laugh when I do manage to improve a number. LOL But he doesn't think I should hone in on a particular number on anything. He tells me to focus on healthy not a particular number. But since normal range levels for D3 are 35-90, I'm sure he will think it's great. The Assistant who called me this AM told me he said everything was great, and then she loaded my numbers into their online system. He might worry about me overdoing it, as he has a tendency to tell me when he thinks I'm doing something to an extreme, so he might not want me any higher.
We also had a good laugh yesterday that my numbers were even stronger than before, always in normal, but even stronger levels of various things. He had speculated a long time ago (he has a PhD in Hematology) that my red blood count (rbc) was suppressed due to heavy workouts. So when he saw that some numbers had bounced up he asked what I had done, and I told him I did half workouts in December and took9 days off from the gym to "recondition" my body from 1/1 to the appointment date. In fact, I think I will extend that to 10 days off, and start Sunday.
He actually thought it was an excellent idea that I had let up a bit, and let my body rebuild. I had been going hard at it since May 2012, and started with 80 miles a week. I'm much more relaxed now in my confidence level and feel very productive at 60 miles a week or 6 hours. We talked further and he felt above all, diet most important, and exercise supplementary and complementary, but above all, nutrition.I'm staying on Metformin after the 5 years. I got on it through my PCP. My Onc did not initially approve it for me, he felt my prognosis was excellent and wouldn't need it, but with the research and data that I presented to my PCP, he put me on it immediately, and then when I updated my Onc that I was on it, he smiled. All I can say is, from the moment I went on it, that was the first good night's sleep I had since the diagnosis. I feel Metformin gave me back my sanity. My Onc is very willing to give me all benefits of possible medications though. Originally, when we thought I was ER 2-3% he was going to put me on Tamoxifen, when he told me most Oncs want to see a 5-10% ER + status to go on Tamoxifen. I was actually on Tamoxifen for 1 week, but through the latest testing with the newer test on the market for ER status, it clearly showed I was Triple Negative all the way. Then he had to pull me off of it. I was originally upset, and he said, well if I really wanted it, he could keep me on it, but felt strongly it was more risk than benefit due to the risk of uterine cancer. So I think he would have put me on Metformin himself if I really wanted at that time, but I didn't develop the conversation further, we had already talked about several other things that day and I felt I would want to be on it longterm so decided it was probably best to get it from my PCP.
For constipation, try more water and probiotics.
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63 years of age, newly diagnosed last month with TNBC. Scheduled for mastectomy next week, January 13, 2015. Discovered on a regular mammogram screening, then had compression mammogram, compression sonogram, and then core biopsy. Scheduled for surgery, then chemo with TC for planned four months. I live in avery small town, but I am fortunate to have a really great surgeon and Oncologist to work with. I am feeling upbeat and positive regarding the outcomes. My husband has been so supportive and helpful. I also have a terrific support system at my church.
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Welcome TNBC1, hate that you are here but your post is so succinct. You have a game plan and are getting ready to execute. We will be here for you every step of the way...good and bad. xo
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Welcome to our group TNBC1, you will find lots of support and friendship here :-)
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TNBC1, welcome to the community, we're really glad you decided to post.
You'll find an amazing group of supportive and kind women here to help you through.
If you have any questions about the forums, feel free to private message us
The mods
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TNBC1= Welcome. This is a club you did not want to be a member of but,you are here. Good luck. The boards are wonderful and you will get a lot of information that will help you along the way. Chemo is tough however,this group prepared me. I made it you can to.0 -
Good morning Ladies:
I am also new to the group. Was diagnosed in October, lumpectomy and lymph node resection early December and have now just had my first Chemo treatment on the 8th. I have been followed in a High Risk Clinic since 2000 as my family history not good. Have had genetics done but shows negative for BRCA1 and 2. Really doesn't make sense to me with my history. But, it is what it is. Am on Day 4 following Chemo and not feeling great. Very tired and trying to keep the nausea at bay.
Honestly, the Triple Negative status has me scared. It is good to see posts from women who are celebrating anniversaries. Thank you for your positivity and good wishes.
Take care all, and hugs,
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Zen...I'm an hour south of Cleveland...how about you?
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Titan, I live in Toledo. I have sister-in law in Akron. Maybe we can meet up sometime if schedules allow.
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TNBC1 & Love Bostons, Welcome to our group. This is a wonderful group of ladies who will offer great support and hope to you.I just passed the first anniversary of my diagnosis on January 9. One year down and more to go, but first follow up mammogram and ultrasound in mid November were all clear.
Speaking of anniversaries, I think it was on this thread where someone within the last 2-3 months posted a definitive link regarding the "official" anniversary for TNers. She said that it was the diagnosis day, not beginning or end of treatment day. Does anyone recall that link and if so, could you please re-post.
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To All My Triple Negative Sisters: This week I celebrate my 4 year dx anniversary. That first year was rough, but I'm alive and able to do just about anything I want. I want to wish success to all who are still in treatment and express thanks to all who encouraged me along the way.
I'm going to sign off for awhile and concentrate on everything wonderful in my life. I'll still think about you all and maybe I'll check in from time to time, but I'm off to see the world.
Jan
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Welcome to all the new folks. Here is a warm welcoming support for you-- blessings
Kath
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Welcome lovesBoston, I'm just north of Toronto. What hospital are you being treated at? I honestly believe that there are more genetic mutations that havnt been discovered yet, there are several women who's posts I've read that you would think have a genetic factor because of close family members having BC but for some reason don't test positive.
Jan69, congrats on 4 years-Yahooo! That's so encouraging, thank you for posting for all of us-enjoy life!
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Hello to all and welcome to the newbies!
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Hi everyone,
I had a question about nerve damage after Taxol. When they gave me the dose dense Taxol I had a reaction in the first 5 min that went to my low back and I was unable to lift my legs. Of course they gave me meds to fix it and continued with the drug. I received 2 more doses at a 20% reduction each time because the neuropathy in my fingers & toes. From that first dose back in October to now I get the chills at random times throughout the day and then the part of my body that has the chills starts to have like a pins and needles shaking sensation that usually goes away in about 5 min. This happens throughout the day and at night. It is not painful just really strange to have these crazy symptoms. I am wondering if I am deficient in some nutrient after all this chemo & bmx in December? I was pregnant when diagnosed in July so the body I'm sure is tired & depleted.
Thank you for any ideas you may have.
Blessings
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Hi SA8PG
Sorry to hear of your troubles with Taxol. It does sound strange, but from my knowledge its just another side effect of the drug caused by nerve damage. I hope you can cope with it and it doesn't cause too much distress.
I hope the pregnanacy is going/went well. My wife was diagnosed in October and she was 15 weeks pregnant at the time. Our little one is due in March. She is also having weekly taxol once she is finished FEC.
Hugs and prayers to you
x
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Thank you so much breastcancerhusband for responding. Our little guy is doing good the cancer was found toward the end of my third trimester so we induced at the 38/39 week mark. He was in the NICU for 13 days from breathing in too much amniotic fluid. I started treatment the week he came home from the hospital. Our family will continue in prayer for your wife and child. Thank you for all you do for us on this board.
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to all the newbies! I can say my "starting chemo June 2014" group was a life-saver on here! If there isn't already a January 2015 group, start one!
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Here you go MomMom:
The question of "what is my anniversary date" often comes up in this forum, and we often have different diagnosis or treatment dates that we reference as our anniversary date. I came across this article and in regards to recurrence peak, this is what is mentioned. The link has other Q&A regarding TNBC.
"August 2013 Ask the Expert: Triple-Negative Breast Cancer Highlights"
"Question: If TNBC is to recur it is usually in the first 2-3 years and I have heard that at 5 years or beyond there is a better outcome. My question is when do you start to track your anniversary date? The day you were diagnosed, the date after you completed chemotherapy or radiation therapy, or the date you had surgery?"
"Dr. Anders: In the landmark study that defined the peak of recurrence at 3 years for TNBC, this was defined as "from date of diagnosis" in the Clinical Cancer Research article by Rebecca Dent et al. entitled "Triple Negative Breast Cancer: Clinical Features and Patterns of Recurrence."
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Just came across this article:
Published Dec. 12, 2014:
Women With Triple-Negative Breast Cancer May Reap Greater Survival Benefit From Nutrition Intervention
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