Calling all TNs
Comments
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Hi All,
SloLoris, I'm sorry to hear about your recent diagnosis. I hope you are still feeling okay after your first treatment.
I'm still trying to recover from my last neoadjuvant chemo infusion of AC. I'm 9 days out from it and feel fine as long as I'm lying down or sitting still. The minute I start walking around, nausea sets in. I'm taking all my anti-nausea drugs.
I've make up a new term...."constirrhea" it's when you have diarrhea from the chemo and constipation from the anti-nausea drugs at the same time. I think I've had constirrhea for the past 5 days.
My surgery date has now been set. It will be Feb. 13. I'll be getting a lumpectomy and an ALND. I'm much more concerned about the ALND and recovery from that than the lumpectomy. I also will be having subpectorial implants removed that are over 30 years old and they plan to take out my port. That's a total of 5 incisions and three drains and they theoretically do it all as an outpatient. We live quite a distance from where I get treatment (a 2 hour drive), so even if they release me the same day, we will most likely spend the night near the hospital and drive home the next day. It just depends on how things go.
I'm not particularly looking forward to the surgery. I think my biggest concern right now is that I feel very beat up from the chemo and with this nausea, I haven't been able to get out and get some exercise. My muscle tone and stamina are really shot from the past six months of chemo. Hopefully, the nausea issue will go away soon and I can get moving around more.
In terms of keeping a positive attitude for newbies (like me), I find it much more helpful for people to be real and vent when they need to. This is a hard disease to deal with and I'm very grateful for this thread. I feel a much closer kinship with my TNBC sisters here because you know and have lived with the fears etc. that each of us faces.
Thank you for being here.
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LPBoston: If all those tests and the biopsy could not confirm cancer, then maybe it was not cancer all that time - I would think the testing on a biopsy is very easily read on whether something is cancer or not. Take comfort in knowing that you did catch this when you did and try not to put yourself through the torture of all the what ifs from the past. It is torture to be stuck in the past like that. I did the same thing, had I known that this was bc and going to be TNBC I would have flew down to the testing center before December instead of waiting the 'one menstrual cycle' that was suggested on the internet. Take comfort in knowing that now several medical staff are monitoring and following you, and in the rare event that something were to pop up, it would likely be handled with much more definitive action, extra clarification and a mountain of people moving quickly into action. You are probably in a better spot now than 2 years ago, because you've had excellent treatment and are being monitored, so your risk may now be lower than the risk before the bc appeared. For now, take back control of bad thoughts by spinning things into your favor. Get nutrition, stay active, get plenty of rest, think positive, listen to music -- all are great things to help build the immune system. Once you shift from the "reactive" thinking of the what-ifs to a more "proactive" thinking of things you'll feel stronger and will start to release some of those lingering what-if thoughts. Remember too that TNBC is generally very responsive to chemo. Hang in there.
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I guess I was never an inspirational person but you are certainly helping me move towards that direction. Thank you for your kindness.
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You're welcome! And bad days .... we all have them. It's what you do the next day that matters more.
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I try to follow along when I can but it's hard now that I'm back to work and with two kids. But I'm wishing everyone well. I have my diep,scheduled,for February 13. Curlylocks, I'm a two timer, with first diagnosis in 1998 and new primary recently, both triple negative. I hear you about not wanting to lose your hair a second time. I didn't want to either and I wore penguin cold caps this time through carboplatin and taxol treatment. I still have a full head of hair. It's not for everyone but I'm glad I did it. You can find more info on the cold cap users thread if you're interested. I'm sorry you have to go through round two and I feel for the other ladies who are facing that as well. Chemo round two was no fun but I am feeling good five months later and have been for the last few months, My biggest issue is feeling sad about losing my breasts. On a positive note I've taken up hula hooping which is really fun. Best wishes to all here.
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Deb - you're story is amazing that it was 15+ years before you had a new primary! You give all of us hope that we can achieve such success!!
Can you share with us anything special you did over those 15 years? Also, how was the new primary found?
It's also very soothing to hear that you are feeling so great 5 months later - and hula hooping does sound enjoyable!
Thanks for stopping in to update us!
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Hi Deb, I am echoing inspiredbydolce. Your story is very inspiring, and you seem very strong. All the best to you!
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Hi All,
I'm up in the middle of the night (It's about 3am). It is amazing that Deb had TNBC so many years apart. It sounds like it was a completely new cancer rather than a local recurrence. No matter what, it's great to hear from someone 16 years out from an initial diagnosis of TNBC. That cold cap must have worked because I've read that carboplatin is really hard on the hair.
I listened to a good webinar yesterday put on by Living Beyond Breast Cancer about exercise. I found it particularly encouraging to hear that studies are finding that weight lifting in the arm after ALND has been found to be okay provided that you start with low weights and increase very gradually. I am having an ALND on Feb. 13. (Deb, we will both be having surgery the same day) and I was an avid bicylist before my diagnosis. Knowing that it's safe to try to rebuild strength in my arm after surgery gives me hope. There is also a recently posted article on this site about same subject. Careful Weight Lifting Doesn’t Increase Lymphedema Risk Article The biggest takeaway for me from the webninar was how beneficial about 3 to 5 hours of walking (or other moderate aerobic exercise) each week seems to be on survival rates.
I really want to get back to exercising, but I'm still dealing with a lot of nausea issues from my last round of AC. It only seems to be a problem when I'm moving from one place to another. I'm okay if I'm sitting or lying down. Using a scopolamine patch hasn't helped any. It occurs to me that I might be okay even with this nausea issue if I try using a stationary recumbent bike at my fitness center. I think I'll give it a try later on today. I really need to get some stamina back before my surgery. This past two months of AC (and all the nausea I've had with it) has really done a number on my strength and endurance.
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Debwarrior - I am pissed having this happening 8 years out, I cant imagine having to deal with this after 15 years out! Sorry you are in the same boat.
My first breast cancer in 2005 was er/pr+, her2-. This one is Triple Negative and considered a new primary. It is stage 1 so far, I would imagine I would need scans to check spread as it was invasive.
I had Taxol with my first bc, wonder if they can use it again? I guess I will find out at my oncologist appt next Wednesday. I had a prophylatic masectomy with immediate DIEP reconstruction on
Dec 16/13. This is how they found this new Primary cancer via the pathlogy report. The surgery probably saved my life! If you have any questions about DIEP, send me a private message would be more than happy to help out. I am thrilled with my new flat tummy and my breasts look REALLY good!Michele
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Curlylocks, it sounds like all things are going great for you thus far. Your reconstruction sounds great and like you won't have to have any revisions possibly!
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Recon stage 1 went well. Home recovering. Xo
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Jenjen - Wow, you are home on day 3? Rest and let others pamper you!
Michele
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I went for my 3 month check up with my oncologist - she basically felt all the lymph node areas - neck, armpits, shoulder, then thoroughly checked both breasts for lumps and bumps - all is good! My MO doesn't do testing of any kind so it is kind of odd, but I trust her - she is the expert after all. She told me to keep doing what I am doing. The main things I am doing to keep cancer at bay are exercise (45 mins brisk walk each and every day), eat a good diet with zero processed foods, take vitamin D (5000 units daily), avoid stress, acupuncture biweekly, massage monthly. I also take medicinal mushrooms and turmeric.
Best of luck to all those recovering from surgery and still going through chemo - there is a life after it all!
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Adagio Woo Hoo! Love those happy 3 month check ups with clear results. J
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I had my surgery 2 years ago, followed by chemo (no rads) - just had my 6 month follow-up and everything is fine. Received the booking sheet for the next follow-up with my onc - ONE YEAR away. I was really surprised that the follow-up appts. jumped to one year so quickly. Not too worried though as I will have an MRI each year in July and I figure that's the best way to find out if anything is going on.
Best wishes to everyone on here who is still dealing with treatments and their nasty side effects.
Doreen
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DorMac WooHoo to you too! Happy dancing all over the place. Congratulations. J
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Wow thread is picking up again. Welcome to all newbies, glad you found us.
Titan - Yep I too would like to feel happy and goofy again. It helped me enormously on here to get through my treatment with all of our laughter.
Tekriter - you have such a happy and kind face on your avatar. Wish we could get bigger pictures so I could see everyone better.
AL Husband - great news on your wife completing chemo. Nowhere else but onwards and upwards from here on. Your wonderful wife has had so much to deal with that she deserves much better things from now on.
Gillyone - I went back on some posts to checks out some spots that Inmate had and noticed you spent some time on holiday in NZ. Can you tell me where you visited and what you thought of our little country.
Inspired - your name says it all. All of your posts are so inspiring and informative and so helpful to us all.
SlowLoris - great news that you are doing ok and hope it gets even better.
BanR - you are right we do seem to adjust to almost everything that is thrown at us. That's because (we are women!!). Just joking.
Linda - can only go so long without hearing from you. You are an inspiration to me with your courage and wonderful loving posts after all you have gone through and always will. I think of you every single day. You make everything feel right again.
Curlylocks - I agree cancer sux big time but we do get through it.
LP Boston - venting, raving, crying, swearing is all allowed when you need to do it and we do understand. We have all done this and probably still will. I too had an allergic reaction to Taxol (A member of the Taxotere group) but they gave me some diazepam and tried again and all went well.
alv58 lot of girls tried metformin. My HbA1c is normal so I don't really want to interfere with that but someone will come on and advise you on how it went.
Jan69 - I would love to retire to the woods with a recliner and a good book. If that was happening then motivation could sod off.
PeggySull - so glad you have found your new normal. My new normal would be with Jan in the woods. What a great life she has but unfortunately work calls for me every day.
Kathrynn - yep that bad penny has popped up again! but so glad to hear from you my friend. You make my heart feel good. Glad Mom is still doing well you must be taking very good care of her. Yep get a new doc girl that will explore every avenue for you, you sure as hell deserve it. How is that hole in in your roof with the tree sticking out of it.
Debwarrior, - Adagio nd DorMac glad things are going well for you all.
My god this is so long I'm running out of room. My spots turned out to be lymphoid tissue whatever that is but no cancer.
Have a great day ladies.
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One other thing - Chloe. I really (thought) she was growing up at last. Hasn't been chewing so much lately. We have some beautiful fruit trees in our garden. Apples, plums, apricots, cherries, you name it and its there. All the plums are looking great and almost ready for picking but everyday a ripe one will fall to the ground. She gets it every time and runs around the garden chucking it up in the air before I can get to it. She must think God is sending her down a ball each day to play with. By the time she's finished with it nobody wants to even think about eating it. Just gotta love her.
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Oh Doreen, that's excellent news! Wow, that has got to feel amazing!!!! It's like nothing has ever happened and you are truly back to being just another normal member of society before bc. Excellent job Doreen - so proud of you!! If I was released for 1 year I don't think I would even be on here ... I would see that as a signal to get up and get out and resume a life without a lot of bc mention. You need to go celebrate big! Big smile for you.
Adagio - Congrats to you too on your excellent appointment! No processed foods?! Wow! What do you eat for snacks? Tell me more about these medicinal mushrooms. Are they the kind you eat or take as supplements? What type of mushroom? Are you eating then only fruits, vegetables and meat and fish? No bread, etc. If Fooducate grades things with an A or B+ I'm pretty much okay with it - depending on what it is. But seeing as how you have been able to give it all up 100%, maybe I could do better even and follow your example.
I gave up Diet Coke and Coffee two years ago, so processed foods shouldn't be any harder. I had really really really loved my coffee and diet coke. My processed foods are: Ezekel bread, Kashi non-GMO cereal, organic corn tortillas, 77% dark cocoa bar and Trader Joe animal crackers (organic) and mini rye krisp bread. I can't imagine parting ways with the animal crackers. Well, I'm glad I read your post before dinner. You've motivated me to just steam a bunch of veggies tonight without the corn tortilla.
Oh - news flash - I read an article today that said olive oil should never be heated - that it's chemical properties change. That we should use organic grape seed oil. They mentioned organic because non-organic producers may use Hexane to release the oil from the grapes.
Here is the article of 17 toxic foods, preservatives to avoid: http://www.seattleorganicrestaurants.com/vegan-whole-food/cancer-junk-food-carcinogen.php
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Annie - Come on over. We'll read, sip tea, nap, tip toe thru the woods, and I'll teach you how to quilt, if you don't know how already. Yes, it's a good life except I get lonely. So let me know, and I'll meet you at the airport. Cloe could chase the squirrels. No fruit trees, just a couple of nutty people. Jan
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Oops, Annie, forgot your WooHoo. So glad you got good news, too. Let's keep it up. J
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Cocker_Spaniel:
So sweet of you to think of me. I read almost every night, but only post when I think there is something of value to add or suggest. I was so very happy to read your post and to find out that your test results were good. A great relief to me, and to you, I'm sure! I'm doing well, just really busy with work, my furry kids, and, of course, Bryanna, away at college. She's doing great and I am so proud of her. House is too quiet without her! She's only about an hour and half away, so she does come home for a weekend (seems to be when she needs something or more money, lol!), here and there, but I love seeing her, so I just pretend it's just to see me! Be well, dear friend and know that you are in my heart and thoughts always.
To all my other dear sisters on this thread, especially those going through more treatment, and the newbies that are just beginning their journeys, I pray that all of you will see wonderful outcomes from your treatments, and that, love, strength and fortitude continue to bolster you as you fight this beast. To those of us with treatments behind us, may we continue to be blessed.
Hugs,
Linda
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Hi folks,
Thanks for the kind words InspiredbyDolce. I don't think that I have done anything all that special. I have tried to eat a good diet, mostly organic, but could be better on the exercise front and I'm trying harder now. I haven't taken anything in the intervening years, but now I take Vitamn D, 5000, turmeric supplement and green tea supplement, like many others here. My D is on the low side, still after months of supplements. Anyhow, I'm glad that I can help inspire others with the length of time that I have been ok. And even now, my new primary was pretty small, but you all know how it is with triple negative. Treat it with everything they have. I was having annual breast MRIs and that's how they found it. I have to say that after so many years of clear mammograms, and clear MRIs, it was a big shock. I understand Curlylocks how you would be pissed after all these years. I thought I was done. I feel lucky though that it's treatable as most of them are. It's nice to be here with other TN's because we seem to be a special subset of those with BC. I'm thinking of the others here and wishing you all well. I'll try to check in a little more often
Deb
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Cocker - I just now saw your post! Oh that is such wonderful news - so elated for you! You go celebrate now, too okay? I wish I could have a piece of chocolate and celebrate with you, but trying to right the ship over here. LOL
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Inspired - please let me clarify that what I meant by non-processed foods is by not using anything that is packaged and is far removed from its natural state. Of course I would eat a corn tortilla if the corn was gmo free and organic - likewise with bread - If it is a super healthy choice - but generally I do stay away from bread. I tend to eat brown rice a lot (organic). It is very challenging, as you know, to cut out a lot of stuff. And I do eat organic 85%dark chocolate. So perhaps I should not have stated that I eat zero processed foods, but rather that I limit my processed foods!!! I am human and love snacks and treats like the rest of us. If I didn't have the daily piece of chocolate, I would feel deprived, and that is not a good thing for me. I also do drink organic red wine! And coffee! So sorry for the misunderstanding!
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hi all..
finished taxol 2 yesterday. 2 more taxols to go and hopefully this chemo drill should end feb 20th.
was having folic acid one tablet a day as prescribed by my general physician since past 1 month for low rbc. talked to my oncologist and he said i could try but it wouldnt help much.
what i read just now that taking folic acid too much ( what is too much? ) could actually help cancer. folic acid helps dna and rna, in cells, which is present in normal cells and cancer cells too.
i was wondering, that whatever good and healthy we are eating through our treatment, is helping our normal cells and also the cancer cells too ( and we want them to die!! )
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BanR- my Onc and I have had a lot of talks too about rbc - I brought it up when I noticed it fell right below normal. He said that chemo will suppress the rbc, and even one year later when my PCP asked me to let my Onc know it was a bit low, I took the report to my Onc (who has a PhD in Hematology) and he said nothing to worry about! He said several things, but what applied to me was that I don't eat red meat and I was doing heavy workouts (14 miles daily) and this was keeping the cells so new (sorry, layman's terms). He said there was not much I could do, there are things that support a healthy rbc,so I have included the link. I also talked to many women on here and some are 10 and 15 years later with a low rbc or wbc - it's just part of their new normal.
During chemo though, my Onc was very adamant about 3 things: no supplements, no juicing, no extra help, such as blueberries, etc - if I wasn't already doing it as part of my normal routine he did not want me adding in anything - he said this was because he did not want anything to 'mask the cells' that chemo needed to target. So when I told him I had bought blueberries and was going to start taking them, he jumped up out of his chair and told me to not assist in any way, it could interfere with the chemo.
Folic acid is B9 - and the body does not store folic acid, which may be why your PCP prescribed the daily dose. When I researched it, B9 helped rapid cell division and since TNBC is usually a rapidly dividing cancer, I did question if I should take a standalone supplement because many of them were megadoses. I instead decided to take a B-complex vitamin, where the levels are much lower.
As long as we are talking vitamins, Vitamin A is something that has also been implicated in increased risk for bc when derived from sources other than beta carotene. I believe (going from memory) it was suggested of not more than 2500 i.u. of Vitamin A to be from non-beta carotene. If a supplement of Vitamin A is 5,000 i.u. and only 25% is from beta carotene, than this would be over what was suggested. However if that same supplement was 50% from beta carotene than this would be within the suggestion. As for myself, I take Garden of Life Raw Whole Food Vitamins - they are capsules, but I open the capsule and drop the powder into my kale drink.
Vitamin A aids in red blood cell production. Maybe you only need to take a great multivitamin, and one where Vitamin A is from beta carotene.
Red blood cell production
Red blood cells, like all blood cells, are derived from precursor cells called stem cells. Stem cells are dependent on retinoids for normal differentiation into red blood cells. Additionally, vitamin A appears to facilitate the mobilization of iron from storage sites to the developing red blood cell for incorporation into hemoglobin, the oxygen carrier in red blood cells (2, 7).
The link below is a List of Foods that are Natural Sources of Folic Acid.
http://www.medicalnewstoday.com/articles/219853.php
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Oh Adagio, thanks for posting. LOL Okay, I think I'm legal again and following the same principles as you. Whew, it was going to make for a very unpleasant day today trying to cut out even more things.
So last night I did only have steamed broccoli and carrots and my kale smoothie. I thought about you the whole time! Whole Foods has this red kale in - oh it's so pretty and I've started buying it in a bunch vs bagged - it is organic. We have found that Trader Joe's has excellent prices on organic, and for the same or lower than grocery store non-organic pricing. I think Whole Foods is expensive - but the bunch of kale is $2.99, and it will last me 3 days - so I think that's reasonable enough.Where do you find 85% dark chocolate? The highest I have found is Trader Joe's organic 77% dark cocoa - I have not been able to find a higher source!
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Happy Friday morning!
Today is the first day I've had without motion-induced nausea since starting AC two months ago. Whoo Hoo! I can finally walk more than a few steps at a snail's pace. I'm excited about getting back to walking to build up my strength and stamina before my surgery on Feb. 13. Today, it's bitter cold outside, so I'm going to work out indoors on the elliptical. At least it's a start!
Ban...here's an article on folic acid. Based on the article it looks like it can be preventative if there is no cancer present, but there is some evidence to suggest that high amounts of folic acid might possibly help an existing cancer.
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Hi adagio,
My oncologist won't do any scans either which I find very strange from reading how everyone else gets them. I am in Boston and have the best care with the best doctors. Just puzzling.
Hang in there!
LPBoston
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