Calling all TNs

Cathytoo

Kayrem...what a pleasure to read your encouraging post. I was devastated when I was diagnosed TN. I'm still doing Chemo and lave a long way to go with my treatment. Most days I'm fine, looking ahead to the future. Other days I think I won't be here two years from now. It's great reading stories like yours. They give so much needed hope and support. Thanks so much for taking the time to post

shiny

meadow, love your bunnie story! Your husband sounds like an awesome guy!

I am 8 years out from my chemo ( FEC-T ) and can honestly say, I am gratefull each day to God and feel blessed by my kiddos and surrounded by treasured moments daily, in the little things.

Btw: for those of you doung chemo..in case helpful..fresh celeri was a real help to my stomac. Seemed to soothe it when nothing else would! I later found out that celeri had ' numbing like' properties.. Well you never know..worth a try if your tummy sore.

Take care, be good to yourself.

Shiny

Valstim52

Shiney, thanks so much for giving us hope and the helpful tip. Never thought about celery.

Meadow, as always such an inspiration and I love the bunny thing. Wonderful hubby

Cathytoo, I too am positive until I read about how aggressive my disease is being TN. Then I see these wonderful posts, and it gives me courage, no matter how my body chooses to go.

I was able to go to a wonderful wedding last night. Felt for the first time since DX 'normal'. If nothing else this DX has taught me to appreciate every moment. I appreciate you ladies.

val

Cathytoo

Valstim52...I know exactly what you mean. I was diagnosed two months before you. I went to a wedding March 5th and had the best time. I was on the dance floor A LOT‼️ I thought how can I have so much energy and still have BC and be on Chemo. But then, I was having such a good time the thought of BC left my mind altogether. I find that there are many days when BC never enters my mind. But, I think even years out, it probably creeps in. I'm wishing all of us what I wish for myself....years ahead to live a great healthy life.

bluedog

Shiny and Kayrem, thanks so much for posting. It's so encouraging to hear from long time TN survivors.

Happy spring, everyone! If you'd like an up-close-and-personal view of some spring magic, check out the DC EagleCam. Baby Eagles!! So cute!! Sometimes mom is just sitting on them, even though they've already hatched, but they're out more and more as they're getting bigger and it's getting warmer. I check in multiple times a day. Guaranteed to take your mind off cancer. http://www.eagles.org/dceaglecam/

bluedog

Damn, I don't know how to make that link live. Help?

Valstim52

Happy Spring Bluedog, I'm going to try and find those baby eagles.

Thanks Cathytoo. Glad to have found you and this thread. We will make it through. No matter the journey.

shiny

Bluedog, thanks re Baby eagles..am sure if we google a while we will find them! Nothing like kiddies and babes of any kind, including Eagles for a little respite and lift.

I echo you Val, you'll get through this. And Cathytwo, lets hope you get invited to lots of weddings, or perhaps dont wait for that, sounds like you would be the ' belle of the ball' at any local social dance club!? Maybe there is one near you?

Be good to yourselves.

Back when I was doing chemo ( with two young kids) used to tell Mother's doing chemo too

.' Be as good a mother to yourself, kind, patient,loving ,generous,forgiving and flexible as you are to your kids, that is what is needed and if you do that, you' ll be doing enough! Be gentle with yourself.'

Shiny

bluedog

http://www.eagles.org/dceaglecam/

Did it! Baby Eagles!!

shiny

thank you Bluedog!

I will be sharing it with my kids in the morning!

Shiny

jenjenl

Ok, I am loving watching the eagles so thanks for posting! We've had a very lazy weekend, which we needed. Me and hubs have been sick - i think all the stress of selling a house and buying has caught up to us. I've had a noticeable increase in back pain so I am now watching the calendar to see how long it's been. My hubby says to not get a scan, we are obviously worried something could derail the plan. BUT i have told him I can't ignore something like this so we'll wait and monitor, then go from there. We will move either way but it sure does suck having to worry about it. The pain is in a new spot in addition to the usual right hip, right shoulder. It's mid back on both side of the spine. UGH.

Allydp

Curly - your dog is adorable!

Meadow - your husband sounds like an amazing man, just as you are an amazing woman. I'm so glad the two of you have each other. xo

Jenjen - man, I'm so sorry to hear you and your husband are both sick and you're dealing with a new pain. Many times I've had new pains creep in and try to steal my thunder, but as you know they've always been nothing. I'm sure it's a combination of being sick, the stress of moving, lifting boxes, etc. I'm sending you lots of hugs and prayers that the pain eases as you get well and recover.

Bluedog - I've also been checking in on that eagle cam! So cute!

Shiny - thank you so much for sharing your story and giving us so much hope!

Hi to everyone else! I hope you all had a lovely Easter!

simplelife4real

Hi everyone! I think I haven't posted here since January. Lot's of pages of reading to catch up. Life is good here. Welcome to everyone who has recently joined this thread. It's a great place for information and just knowing you are not alone.

I've been watching the eagle babies too. They are getting so cute. We have a duck that has made a nest in our back yard and is sitting on her eggs now. I'm hoping we will have our own version of baby birds to watch (through a telescope) in a few weeks.

Wishing everyone a great day.

KSteve

I don't post often, but wanted to give some hope for those in treatment about life returning to normal. My DH and I will be celebrating our 30th wedding anniversary in June in Bora Bora! We were lucky enough to go there for our 20th anniversary and promised we would go back for our 25th. Well, I was in the middle of my breast cancer fight at that time. So, here we are, 5 years later, and we booked our trip. To say we're excited is a huge understatement! Having been lucky enough to have been before, we know what to expect this time. However, this time will be so much sweeter, as only you all can understand! So keep on taking one day at a time. Life does get better. Hugs to all!!

Kathy

bluedog

Congratulations, Kathy, and thanks for posting!!

6feetover

That's awesome, Kathy! Congrats!!!

Lou53

LOVE hearing the positive stories! Sometimes I get really down and it helps so much to hear aboutpeople doing well.

Cathytoo

Lou53...how many infusions did you have? Is there a reason you weren't given ACT? I'm also doing TC. Finished my 4th today and my doctor wants me to do two more if I continue to do well with the treatments. Although he did say many women stop after 4. He also said a recent study indicates that TC is equal to ACT

Goldie1431

Hi Cathytoo:

I know you were asking Lou53 but I wanted to chime in as well as I also did TC chemo rather than ACT. My doctor felt TC was just as effective, easier to tolerate and less possibility to cause heart harm. I was also to do 6 infusions assuming I tolerated them fairly well. I made it through 4 and then my doctor recommended I stop due to tinnitus and hearing issues. He felt there was a possibility I could lose my hearing. Friday will be my 3 year cancerversary. I know many TNC patients who also did TC and are doing well

Cathytoo

Goldie1431...thanks for responding. Did any of your friends also do four rather than 6. I expect to do well with this fourth infusionas I've had very few side effects. I don't want to push to two more since I have a friend who did get neuropathy after the 6th infusion. But, I'd hate to think I made the wrong decision if a recurrence happens. Lots to think about. Again, thanks for your input. Good to see you're doing well. Keep up the good work

greenae

Cathytoo

I did TC x 4 last year at this time. Three weeks after my last infusion I developed neuropathy in my feet. It was pretty annoying for about 6 months. I am happy to say I just occasionally feel some discomfort (burning) at night, after days during which I spend a lot of time on my feet. My NYU MO prescribed 4 infusions from the get-go, ACT was not necessary because of the size of the IDC (1.1cm), and the negative node (Thank -you, God!).

I am recovering nicely from my second reduction of my healthy right breast, and fat grafting to my implant recon of the left. My stitches will be coming out in 3 days, and back to work next week. I am happy with the results, love my docs and NYU! I thank you all so much for your support. And I also love hearing from TN sisters who are years from DX. It does get better! And every day I feel stronger mentally. The physical parts of tx were easier than the psychological, for me.

Wishing us all Good Days ahead!

Big Hugs!

Arlene

Lou53

Cathytoo,

I have done 5 so far and scheduled for my 6th on Thursday. I am wondering if he may change that when I see him today as I have had some problems with my fingers and hands this last round as well as swelling in my legs. I chose the TC rather than the ACT because I was worried about the potential heart problem issue plus after much research, there was little difference in outcomes even with being node positive. I have also changed my diet and lifestyle in hopes of preventing this coming back.

Meadow

Lou, so glad you are doing well. How have you been eating healthier? Always looking for motivation in that area.

Lou53

Meadow, I eat almost all organic everything. I cut down on red meat, breads and other carbs and sugar. I rarely eat out and NO fast food, processed food or junk food. Lots of veggies and fruit. I have a smoothie almost every morning with kale, walnuts, blueberries and organic protein powder with almond milk. I haven't had any alcohol for months but may indulge in an occasional beverage when I get through all of this! I plan on getting with a nutritionist to monitor what my body needs and get my pH in balance. I am planning to get more exercise in also!

Cathytoo

Lou53...I also chose TC over ACT to avoid any residual long term problems...especially heart. Aldo, my tumor just pushed me to Stage 2 because of a half centimeter. The doctor is considering it Stsge 1, early with no lymph node involvement and clean margins. I'm happy with that. Boy, I give you lots of credit for your diet and life style changes. I began eating organic and plant based goods immediately after my diagnosis. However, with Chemo I get a bad taste in my mouth and my taste buds take a vacation. All I can taste are tomatoe based foods and vanilla ice cream. So, my diet is not good. I've also been more sugar based foods which I can also taste. But, I'll change that after Chemo is finished. Back to TC..,I'm worried about my fingers. I've been getting days where my fingertips are very painful. No tingling or numbness but real pain. Skin around nails is cracking. I asked the MO yesterday and he feels it isn't related to TC, but the weather changes. I wouldn't like this to be a permanent issue because I work part time and everything I do is computer based. Anyway, I'll see how this 4th infusion goes before making a decision to go further

Goldie1431

Cathytoo:

It seems that 6 is the recommendation for tumors larger than 1cm. I know women with <1cm whose regiments were 4 TC infusions. Those of us with larger tumors were generally prescribed 6 infusions. I do know others, like me, who were unable to complete all 6 rounds and stopped at 4 on the advise of their MO. I also know some who had the amount of taxatore reduced by their MO's and went on to complete all 6. This is where your faith in your doctor comes in play. Discuss all your concerns and find out what he or she suggests. Everyone is different. Your doctor is the best individual to advise you what is best for you.

I wish I had been able to complete all 6. I had to weigh doing 6 and potentially being deaf for the rest of my life with a possibly better outcome,against less chemo and possibly a worse outcome. My doctor explained to me that there were no studies on the effectiveness of 6 versus 4 TC infusions since 6 seems to be the standard protocol, there are no studies where only 4 were prescribed. So nothing to compare! In the end I followed my doctors advise.

Good luck to you on all of this. Believe me I know how difficult it is

Cathytoo

Goldie1431...Thanks for chiming in. Yesterday my MO said there was a recent study that seems to indicate that 4 TC was equal to the standard ACT protocol. Who really knows? Good thing is that TNBC is a hot research topic right now so there's a lot being studied. The proof for us will be in our personal results. I think I will do a 5th if I still have mild side effects from this 4th. A sixth will remain to be seen. You're doing good with only four. Three years out. Keep going strong

Lou53

My oncologist told me today that he wants me to complete number 6. He said nobody knows really what will work or not work but with a high risk cancer like triple negative plus lymph node involvement I need to plow through the last one. *sigh*

Meadow

Hang in there Lou, you can do this.

Paintingmywaythru

Cathytoo I am nearly 5 years out and had only 4 treatments of TC and radiation. I am soon going to be going down to annual appointments with my oncologist. I am here to say it worked and I feel so thankful for every day that I am here. Hang in there everyone going through treatment. There is life after this and you are able to look at the world without fear as time goes on.