Calling all TNs
Comments
-
mom2, thanks for joing us. And congrats on 1yr out! Looking at your stats, you did rads, then chemo then surgery?? Seems like an unusual sequence. I love the idea of a natural approach to wellness and survivorship. And I've heard of the paleo/low glycemic diet and I'm sure others will weigh in on it. There's also the metformin I'm considering with my MO. But it's not a natural approach, it's a diabetes drug that has shown to decrease recurrence rate in tnbc. Ask your nurse about it and would like yo see what she thinks. Will start on it, if I want, after my next visit with her in aug. She wanted me to finish with rads before starting. Welcome to this board and forum
0 -
Oops! I've corrected the dates in my profile now... Thanks for the info - I will ask about the metformin.
0 -
Mom2two..I'm also using a natural approach moving forward. Lots of juicing, organic foods, probiotics, exercise. I am also doing metformin which is not natural, but was prescribed by my MO. She also checks my Vit. D level. I keep it on the high end (78 at last check). Glad you are here.
0 -
simplelife...We love Crossville! Wish we were on that side of the state! I'm on high dose Vit. C and Vit. D. along with a couple of other supplements. Pretty much all organic and I juice some too. Will go back to my NP end of August to get results of the multitude of tests she ran, and will definitely ask about the Metformin. Glad to have found this support system!
0 -
mom2, ok got it now. I look at everyone's stats so was confused but makes sense now. Keep us updated as to recommendations of your NP
Simple, any SE's for you from metformin?
0 -
Ally Congrats on last Chemo! It is a huge step forward!
Cocker - thanks for writing - was worried
Just got the call - MRI is CLEAN!!!!!!! Yeh - now heading up north for a week on vacation!!!! Sigh of relief!!!
Be good everyone and will be thinking of all!
0 -
Awesome news LP!! Enjoy your trip and be safe!
0 -
LP - happy for you! Enjoy your trip
0 -
LP - awesome news!!! Safe travels and have a wonderful time!
0 -
LP wonderful wonderful news. Just what we all want to hear. Enjoy your time up North and don't do anything I can't do, but, if you do enjoy it lol.
0 -
Lisa, I had to build up my dose of metformin very slowly due to diarrhea in the beginning. I don't have an issue with it now at all. I have Crohn's disease and I don't have a colon due to severe ulcerative colitis in my late 20's so I had to take it slower than most people probably would.
0 -
Hi everyone,
Fwiw, I asked my onc about probiotic and she said absolutely not.
I am doing no alcohol and trying to lose weight. She said lower body mass index helps to reduce recurrence risk. I also take vitamin D3. I had been taking 2,000 IU, but she just switched me to 1,000 because my levels were too high.
0 -
Simple, I do not know much about metformin, so it is shown in studies to benefit TNBC patients? In reoccurance prevention?
0 -
I think the idea with metformin is it keeps blood sugar low. Chronically high blood sugar encourages inflammation and cancer is an inflammatory disease.
0 -
Placid: Did your Onc give a reason you should not take a probiotic?
0 -
LPBoston, Wonderful news on the MRI!!! Enjoy your trip!
Allydp, Congrats on finishing chemo! You did it!
Simplelife, Thanks for the info on Metformin. I've heard about this but never understood the reasoning behind it before. I will ask my MO about this at the end of chemo visit soon.
Placid, my MO said Yes to a probiotic.
Paula
0 -
LPBoston, that's is fabulous news! Enjoy your trip up north! Yahooooo
0 -
Wonderful LP!! How a fabulous worry free trip!!0 -
Navymon - She said the data do not yet show a benefit and supplements are uregulated/risks are unknown. She wants me to focus on food/good nutrition. I am doing pretty well with that, not so well with exercise as I am still quite fatigued and have some neuropathy.
0 -
Thanks for info, Placid. It never ceases to amaze me how each Dr. can have such varied ideas and advice. My Onc doesnt have a problem with probiotics.
I do very good with regular exercise but I am not consistent with enough fruit and veggies in my diet. And I refuse to give up drinking wine. DH and I love going wine tasting. So I guess in the end, we all do the best we can with the hand we are dealt!
0 -
Placid, Sorry to hear you still have neuropathy. Did you ice during Taxol? Not sure that was being widely done two years ago. Ive been icing and with only one more to go, no neuropathy so far. However I've heard of it popping up months post chemo, so no guarantees.
Navymom, good to hear you still enjoy wine tasting! I'm in Virginia with beautifully scenic wineries. No desire for wine going through chemo, but looking forward to enjoying a glass occasionally down the road. MO said 3 glasses a week no problem. Yay!
0 -
Has anyone recently had their Oncologist add carboplatin to their taxol in the 'adjuvant' setting for initial tx for TNBC? The reports coming out of the SABCS in Dec. 2013 and ASCO this summer 2014 show benefit for the addition of carboplatin in the neoadjuvant setting but no clinical trials have been done to support it in the adjuvant setting. I have seen on some Facebook TNBC pages where Onc. Are beginning to offer this as it seems superior to the current standard treatment of TAC alone.
0 -
I have read about the carboplatin also and I have seen a few ladies on these boards post about having it added! I for one did not have the option!
0 -
Mom2two67 I saw your post a few pages back, welcome to the forum! I too have had so much wrist/hand issues since chemo, I finished chemo in Dec and rads in April, My hands feel arthritic now, did not before. I am still struggling with Taxol toes too, neuropathy still a problem. My Onc said that neuropathy can get worse before it gets better, so the fact that it seems worse now 7 months out from chemo doesnt mean I should give up on seeing improvement down the road. That did make me feel better.
To all you fine ladies out there.....have a great day!
0 -
Hi Meadow, So sorry that you're still having neuropathy issues! If you don't mind saying, did you ice during Taxol? And when did your issues start?Thanks
0 -
Deana - welcome. I know you're looking for adjuvant specific, but I just finished ACT + Carbo in the neoadjuvant setting. I did a lot of research before starting chemo and asked my onc if I could add it. If you have any questions about side effects, etc., I'd be happy to try and help. Wishing you all the best.
0 -
I had my MO add carbo to my regime, but after surgery. I first met with her after I had surgery (was never offered neo-adj). The San Antonio results had just come out in December and I asked her if she would add it. She said it looked promising and she would be willing to add it with my Taxol. Side effects: well, much better than AC. My red counts were very low at one point and I needed a transfusion. And then I had to skip 2 weeks due to low white count. Overall, I feel pretty good, just a little tired and sometimes nauseous.0 -
MomMom, I did not ice, I chose not to, I have a very aggressive BC and I did not want to risk the chemo not getting to every single part of me. I know studies to not show icing is a hindrance to chemo effectiveness, but I just could not tell myself to risk it. I of course did not know how neuropathy would actually be, and hindsight is alway 20/20. I had AC then Taxol. My neuropathy started with my second Taxol, I had dose dense treatments, every 2 weeks for eight treatments. Finished in this past December, it has gotten progressively worse as time goes on.
But I can do this, even if it gets worse I can do this. Life is still good!
0 -
Meadow, You are absolutely right, life itself is what is most important! We all do whatever we feel comfortable with, and all of our choices are right for each of us. If you haven't discovered it already there is at least one neuropathy thread here. Also, at a bc support group meeting there was a lady who suffered from it who had just found relief by wearing a compression stocking. It covered her foot and went to to just below the knee. Sending good thoughts our way.
0 -
Like NavyMom who mentioned in above post, it amazes me how different MO, or hospitals have different reasonings. My hospital "iced" for taxol but I was told that was to prevent loosing finger/toe nails. I still lost 3 toe nails. My chemo nurse had told me that my hospital doesn't use cold caps for exactly the reason Meadow suggested.
Meadow and MomMom, I agree totally, each of us has to do the absolute most we feel comfortable with-with the best information we are given, and not regret or feel badly afterwards!
I should mention that I did get neuropathy in both fingers and toes but I've learned to put up with it as it is not severe and has seemed to improve a bit with time
0
