Calling all TNs
Comments
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Stupidboob,
Thank you for taking time to write to me. I really appreciate your insights. I am sorry that you bc came back
. Is it on the other boob? I saw you had a mastectomy on your left one. My bs gave me some info on mastectomy yesterday to study and think about it just in case I end up needing to have it done. 0 -
Hi Scouser47,
I heard people say sugar feeds cancer, is that true? I know you are diabetic so you must be controlling your sugar on that reason as well. I am just wondering whether I should keep doing my fruit/veggie blend for breakfast or i should take away the fruit part.
Thanks!
J0 -
Scouser47.......here I go again, I had typed a good bit then went to see how to spell something and used this page.....DUH. My hubby says the same thing...........do not worry until you have something to worry about. It is easier said than done. I am thinking about ordering the Dancing With The Stars video and see if I can stick with that. We have the Xbox Kinect and there is a lot of things to do in with them but I just do not do it. I do not control my sugar intake either and I get angry with myself for that. You would think that I would be exercising and eating better for the fear I have but I don't. I hope that it is just scar tissue too. Glad that is what yours was.
J......no it came back in the same side but it was in between the major and minor pectoral muscle and the lymph nodes up to the collar bone.....(see why I can't not be fearful). If I had to do it over again though, I personally would still chose mastectomy because for me (we all have to go with what we feel and how important our boobs are to us) but I did not want to leave it anything to grow in and I knew that I would be worrying every single minute as to whether it was still growing in there. Good thing I did that too because there was more cancer in that breast when we did the surgery. I did have the breast MRI which did show other spots in that same breast but we did not biopsy them until after surgery because I knew 100% what I wanted. I did not expect it to come back though, but mine was in my lymph nodes at the time of surgery too. 3/15. The sugar thing you will get so many different answers to that. I still am not sure how I feel about it because we grew up on sugar but was moved all the time, outside playing and etc. and now people watch tv., play video games and etc. Some say sugar itself feeds it some say it is the lifestyle and the lack of good food when we feed on the sugary foods. My dilemma that I can not come to terms with is that if sugar does not feed cancer then why do they shoot us up with glucose to do a pet scan because the glucose runs right to the tumor.....you would think that would be the answer right there but they say it is a different kind of sugar. I think it all boils down to being like we have always been taught everything in moderation. I think that your fruit and veggie is better than say a poptart. I would stick with it.0 -
Kath's primary care doc says he'll be happy to write an Rx for Metformin. I'm glad! Onc won't do it, but also says he wouldn't object if her primary was to do so. I just feel we gotta do everything we can to keep the beast at bay.0 -
Congrats Luah on 4 years! Wishing you 40 times 4 more!0 -
Just got this from the ACS:0 -
Got this from the ACS today:
Today, we want to report back to you on what some of our brightest researchers have been doing — to give you a sense of the kind of breakthroughs your support makes possible. As a committed American Cancer Society supporter, you are a vital partner in the fight to make this cancer's last century.
Just this week, it was announced that a former American Cancer Society research grantee is one of the three scientists receiving the 2013 Nobel Prize in Medicine or Physiology! Dr. James E. Rothman, along with two colleagues will be honored for defining the control of the movement of membranes in cells; which contributes greatly to the understanding of cell functioning in numerous diseases, including cancer. These internal cell membranes are key to the function of cells and the ability of cells to move, both of which are hallmarks of cancer cells. In 1982, while at Stanford University, and in 1988 while at Princeton, Dr. Rothman's research was supported by an American Cancer Society research grants.
Investing in researchers like Dr. Rothman is possible because of people like you. Here are just two of the other advances that may help cancer patients in the future that have been made possible by American Cancer Society supporters like you:
new device that can detect tumor cells in your blood
The Herringbone-Chip is capable of finding rare circulating tumor cells also known as CTCs. CTCs are living tumor cells which are thought to be metastasizing and they are very hard to detect because very few of them are in the bloodstream. With this new microfluidics-chip, tumor cells could be found much earlier and could save lives.
A new way to predict if aggressive cancers will spread or not
The presence of a specific type of molecule called miR-101 may be the link that allows doctors in the future to predict whether a tumor will remain contained or if it will be very aggressive and spread. What's more, new research suggests that some cancers could be contained by putting miR-101 into tumors that have lost it.
We thank you; cancer patients across the country thank you; and future generations thank you for being part of this fight.
Thank you. Please feel free to share this with friends or family who might be interested, as well.
Sincerely,
Your American Cancer Society
P.S. If you're inspired to make a gift today, please donate here. Innovative and deserving projects as well as critical programs and services for families touched by cancer are always in need of funding0 -
Congrats Luah. There are quite a few of us here with four years under our belts now, though I notice we don't post so much any more.
I belong to a support group that meets once a month. Our speaker (a doctor) on Monday talked about recurrence, and what we can do to lower the risks. I thought I'd share a couple of things she said. I'm sorry I can't give sources for her information, but she did back everything up with stats and graphs etc. from reputable sources.
Alcohol - one or two drinks a few times a week does very little to increase our risk until we hit age 75, so don't sweat a few drinks. (But the increase in risk at that age may or may not have anything to do with alcohol, just an observation of stats.)
smoking - increases our risk of recurrence by 50%, so don't. This was the one think she spoke about in strong terms.
weight - try to keep it reasonable
exercise - every little bit helps. It's better to be fat and exercise than thin and sedentary. So even if you're on the heavy side and feel that exercise is not doing anything for your weight, the exercise is still a positive thing.
food - go light on animal protein, eat more veggies, fruits etc, stay away from processed food as much as possible
supplements - calcium and D3 for us older ladies, a multi vitamin and perhaps fish oil. Green tea is good. Mostly she is not much into supplements. She did say a little orange juice is good with calcium and vitamin C helps our bodies absorb the calcium. Also spread your calcium throughout the day, not all at once.
And an interesting final point that has nothing to do with recurrence - chemotherapy can mess with your metabolism!!!!
Hope this is of some interest. Nothing earth shattering, but perhaps a reminder to be reasonable with ourselves.0 -
Hi ladies! I have been gone away from the boards for a while now. I slightly skimmed over some of the pages. I just had a question. I have been going to my dr's every 3 months now graduated to 6 months. Sometimes, not all the time, I have a slight pain under my arm and also if I go without a bra, i have pain. I have told all my dr's about this and they just tell me its a side effect from the surgery and radiation. I am a 2 years out from treatment. Should I insist on a ultrasound or something? Does anyone else experience this? Do you notice you need to wear a bra 24/7?0 -
Stupidboob,
Thanks again for your input. I also worry about lymph nodes test I am going to have. Wish you best luck in dealing with the comeback. I can imagine it's not easy.
Hugs.
J0 -
Ladies has anyone had their Onc recommend Vitamin B12 and Folate after treatment? My wife's Onc originally, back in August, recommended Vitamin D, which she takes. Never had he mentioned anything about B12 or Folate before. Then at her last appointment a week or so ago he blurted that out. He also told her to "back down a little bit" on the Vitamin D. I wonder why?0 -
gillyone thanks for sharing that info. every little bit helps
ksmatthews I do hurt more when I don't wear a bra. I have just finished up with rads in Sept. my second go around with the beast as I did not go radiation with the first go around but I can tell you I have pain now, but because of my cancer being in between the major/minor pectorals I will be asking for one. I feel like if they will do it for you, have it done for peace of mine. That way you will know. Please update us when you do.0 -
Gilly: Thanks for sharing all that information. It reinforced some things I've been hearing and reading. Very nice to hear it from a doc.0 -
Hi AlHusband, I was recommended B6 and b12. The B's (esp 6 and 12) are good for energy and fight neuropathies from chemo.0 -
Thanks njprn. I kinda thought that. Just found it weird because my wife hadn't complained about neuropathy OR low energy.0 -
My onc never told me to take the B's either. My family doc finally said to do it this last time after blood tests showed my B12 really low. I am not even on chemo anymore but was told the after affects of even one dose of chemo can upset our metabolism. So now taking a liquid multi vitamin (mix in juice) that seems to be helping.0 -
ALHusband, Do you know why carboplatin and Taxol were chosen for your wife's chemo ? Was it because of the BRACA2? I'm curious because I think the platinum drugs are a good choice for TNBC and was told I needed to be in a trial to get it, that ACT was protocol.0 -
njprn actually it was Cisplatin and Taxol that they used. Cisplatin was not a choice when setting up her treatment on her profile on this board. So, I chose Carboplatin as the closest thing because they're quite similar. The reason they used it was that my wife had had Stage 4 Hodgkin's Lymphoma 16 years ago. To treat that, they used Adriamycin and some other chemo drugs. You can only have so much Adriamycin in a lifetime without risking leukemia and/or heart failure. So, Adriamycin was not an option. Cisplatin and Taxol were agreed upon as the best course of action by the doctors, and the tumor board, at Vanderbilt Cancer Center in Nashville and a rock star doctor at Cornell Weill agreed, as did the local Onc here in Huntsville. The Doc at Vanderbilt cited that IF my wife was BRCA positive, then Cisplatin and Taxol could actually work BETTER than Adriamycin. At the time, we didn't know whether she was BRCA positive or not. Apparently TNBC in the presence of a BRCA mutation is "exquisitively sensitive" to platinum based therapies. Well, it turns out my wife was BRCA2 positive. In a weird way it was a two edged sword! Being BRCA positive meant the chemo may be more effective, but also meant a Mx in the affected breast and a prophylactic Mx in the other one. Also means prophylactic ovary removal is in order, which will happen Nov 6. Then , with God's help, we can hopefully put this whole nightmare in the rear view mirror.0 -
ALHusband:
Although a few years ago, most docs were happy with the Vitamin D level reading anything over 32. (Mine was a 5 at diagnose!!!). Now, since more research has come forth regarding Vit D3, most oncs like it to be in the 50's. Mine is 58 now and my internist also told me to cut back from 4,000 units per day to 2,000, which have done. As with any vitamin or supplement, too much of any one thing can also cause problems and having too high a Vit D level can be googled to see the symptoms. I also take 1,000 mgs of B12 a day too. Wishing you and your wife all the best.
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And njprn the Onc at Vanderbilt did say that they are doing clinical trials with Cisplatin and Taxol. There is significant evidence mounting that perhaps this combination should replace ACT as the standard of care for TNBC with BRCA mutation present.0 -
Thanks for the info LRM0 -
Njprn: Check out this link - very interesting:
http://www.cancerfocus.org/forum/showthread.php?p=9981#post9981
ALhubby: You're welcome!
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ALHusband, I was in the Vanderbilt trial here in Boston at Dana Farber. 12 wks of Cisplatin, Taxol and RADoo1 ( which was blinded), surgery, A/C then rads. I had done research and platinum drugs had been studied with some promising results so I enrolled. They said you get at least standard protocol when in trials therefore the A/C. I've also read that if the TN is basal like in pathology that it responds well to that drug as well. Also Cisplatin is what is used for ovarian cancer (basal like) and since the BRACA gene is close it makes sense that it would be used. I agree that it will replace a/c someday for some TN's. Plus once with A is enough!! Well wishes to you and your wife and may this all be in the rear mirror soon!!0 -
LRM. Thanks for the link. Interesting. I've read about the PARP inhibitors and asked about/for them and was told they didn't use them there at that time and if I wanted them I would have to find a trial that used them. I was dx in Jan 2012 so not sure if that's still the case but they appear promising!! Fingers crossed for a cure!! Be well....0 -
Please read up on the B6 for the neuropathy because if you take to much B6 you will actually get worse symptoms of this. I did and read up on it and turns out it can cause numbness. I was not taking to much either, sometimes it is just a side-effects of it0 -
Hi Ladies (and one ALHusband)!
I wanted to just hop on here and tell you all that I have received your requests for the info. I will send it out this weekend for sure. I was sending through a yahoo account, but they changed their format, and now all messages are linked, like a running conversation, sort of like gmail. So I didn't want to send from there, because I wasn't sure if it was forwarding everyone's e-mails to everyone else. It was very confusing to me, and I'm no dummy!
Anyways, I'm setting up account on my desktop, (a non-yahoo account) and will be sending your materials over the weekend. Just wanted to update you.
Hugs to all my sisters ... and to one ALHusband and his wife!0 -
J thanks and good luck to you too...............the second go around it a lot more on the mental for me than the first go around.
ALhusband I think that it might be that there are new studies coming out that to much Vitamin D is not as good for us as they thought it was. (not just cancer patients, all people)0 -
It's with a heavy heart that I let you know that Michelle (LUV) is in the care of the Hospice and she doesn't have much time left. I find is so hard that this tiny vivacious lady won't be able to do all the things she has always loved doing. She has always been ready to go anywhere and to give life all she had. Many prayers are with Luv, Rick and her family.0 -
Cocker_Spaniel,
I am new to here so do not know Michelle, however my heart is heavy as well. I send out my prayers to her and her family as well.
J0 -
to many leaving us....................I hate this disease. My thoughts and prayers are with them0
