Calling all TNs

kelben

Heidi, your horses are very handsome, I wish I was in better shape, and I would be riding all the time, it is such a great feeling.   I will be retiring the first of May and I can't wait.   I breed French Bulldogs and will be expecting a litter later in May.  I don't believe there is anything better than animals to help take your mind off your aches and pains

Speaking of pains Heidi, hows your knee?

lindaa

jenn - what 2 trials were you offered?  how cool to have a veg daughter who help you with this.  My DH and I worked the juicer today - what a mess!  We have the smaller breville and managed to splatter the upper cabinets.  We made a carrot concoction and a broccoli one.  They both came out pretty good.  We added apple, grapes, strawberry to cut and it worked well. 

Anonymous

kelben-I use to breed horses (Studly is Petey's dad) and always loved the process; mare care, foaling, that special bond with the stallion. We have Boston Terriers, they are so simialr to the FBs.

I am still walking with a slight limp but I can finally go down the stairs normally (instead of sideways) and my ROM is coming back. I did so much in the pool the other day though that I have a TON of sore leg muscles. I can't really *swim* yet (ROM still a bit too stiff) so I figured I'd just run in place, power walk, etc. in the water. Funny, it didn't seem all that hard while I was doing it, but my muscles today are telling a different story.

Can't wait to get back in the saddle, but want to be sure I won't risk further injury if I do, so will probably hold off another week. I have one horse I need to work a bit before I put hubby on him. He was supposed to be my "spare" for the "pair", but since my BC Dx I haven't had time to train him to drive (he'd jumped a fence with a training cart attached to I need to be extra careful bringing him along).

kelben

Jumping a fence with a cart attached probably wouldn't be very good... I don't know myself, but picturing it with you or hubby in the cart isn't my vision of a leisurely outing on a nice spring day....!!!!!

Bostons are more energy than frenchies, but so darn cute, you can hardly stand it when they are babies... kissing them all the time.

Glad to hear your knee is coming along, my hubby had surgery on his knee, and he was really sore for a week or two, but once it started to feel better things moved on quickly,,, the better it felt, the more he would do and more he worked it the better it felt.

Kymn

ok been doing some reading to today on triple neg....feeling a bit freaked out and vulnerable I am getting FEC-D but no word of taxol? What did you ladies get and should i be asking my onc why i am not getting this.

cc4npg

Kymn:  Most of us will advise you to get at least two opinions before making decisions on pretty much anything, and chemo is no different.  Some of us get 3 opinions.  That being said, there is a pretty good chance that if you ask 3 oncologists what they recommend for treatment, you'll get at least 2 if not 3 different answers.  A lot of us here have had 4 rounds of Taxotere/Cytoxan.  Several of us have had 6 rounds of it.  Bunches of us have had Adriamycin/Cytoxan, followed by Taxotere or Taxol.  And then there are also several of us who had FEC.  Hopefully someone who's had the FEC will chime in here, but don't necessarily panic yet.  I asked lots of questions before my treatment started because I was reading all kinds of things too, so questions are a very good thing.  I thought I wanted to have 4 dose dense rounds of AC, followed by weekly Taxotere or Taxol, but it was explained to me that for "my" cancer, I didn't need all of that.  I believe you're in Canada?

Luah

Kymn: The D in FEC-D is taxotere (doxetaxal), a taxane equivalent to taxol.  What you're getting is very typical standard of care for trip negs... 3rd generation chemo, the big guns... you'll be getting it all, no worries! 

Kymn

yes CC I am in canada, alberta. I believe I am having 3 treatments of the FEC and then 3 of the D after that will be having radiation. I guess I will just have to ask my Oncologist the reasoning behind this. it does get so confusing with all the reading doesnt it

Anonymous

kelben- no one was in the training cart when that happened. We were still in the ground driving stage and horse was resistant to left turn, freaked at the shaft, got caught up in it and bolted. It was frighteneing but, amazingly, no one was hurt.

kymn- I think Taxanes are generally indicated for TNBC, according to some of the articles that have been posted in here. Might want to ask your onc about it.

Survivor2Be

SUZE35  its been a couple days, and boy this list has flown!  But, as I was catching up, my stomach was clenched awaiting your future and praying for you.  I am so happy for your good news.  

I'm still in the hospital, but the fever's been gone awhile.  Today I dealt with the worse pain I have ever felt: 3 back-to-back neupogen shots!  Man, I couldn't even walk!!!  But, motrin works wonders and now I'm better.  

I think the worse thing about this hospitalization is that it is making me face the reality of the situation.  I have worked all through my treatments so far, so besides the hair (which isn't really that bad), I don't think chemo and BC have affected my life.  Well, now it has.  It was a real eye opener for me and made me realize how much I HATE IT!!!!!!  I hate not being able to do the things that I take for granted as a regular human being, as a mother, as a sister.  It sucks and I hate to be sick and why can't I ignore it and it will go away.  I don't want to not hug my kids cuz they might get me sick, or comfort them when they're sick, or sleep with them cuz they miss me.  That was not part of the deal with this.   

Kymn

Survivor Im so sorry you are feeling down today. I am glad the fever has gone down though that is great news and you will be home soon with your family. The reality of this does just kind of sneak up on us and whack us once in awhile doesnt it. but we have to keep the faith that once this treatment is all over we will go on living our lives as moms, sisters wives and friends and will be more sensitive to how important all of these people are in our lives. I am starting a journal for my kids so they can know just how much i love them and how much I will endure to make sure I am here for them.

Keep strong, dont worry about missing some work just take care of yourself

Love and light from canada

Kymn

Sugar77

Survivor2Be - sorry to hear you are in hospital. I'm sending you healing vibes!

Kymn - I had a different chemo than you are getting but there are lots of other women who have done FEC-D on BC.org so I'm sure you'll get good advice/tips here.  I think it's more commonly given in Canada but I could be wrong.  

Just watching SNL...it's always a hoot! 

Suze35

Survivor2Be - thank you, it helps so much knowing the positive thoughts that are out there. I am glad you are on the mend. This disease takes so much from us, and I feel like, even when I beat it (not IF), I will have lost this time in my life with my kids.



Kymn - I am also writing journals, one for each. I cry every time I write, but I want them to have something tangible, in my own hand, that they can always turn back to.



In 36 hours I will finally be having my surgery. Now that my first scare is over, I am back to worrying over what I am feeling in my breast, of course. Three weeks ago, I couldn't feel much of anything. Now, there is tenderness and spots of something...tumor? Scar tissue? Ugh. But if it is tumor, then I will just have to gear up for another fight and more chemo. I won't go down easy!



Sugar - I love SNL. We TiVo them all . Right now I'm lost in a James Rollins book. Lots of spy heroics mixed in with could-never-happen stuff. A good brain suck, lol.

slcst12

LauraJane:
Small world Sometimes seems smaller in Indy!

The bracelets were my husbands idea of counting chemo. We found them in the TLC catalog and there were 8 for like $10. Little cheap plastic pink bracelets. I began with 8 and take one off after I finish a round of chemo.

I post the pick on FB and here, (mostly b/c I figured people on FB wouldn't want to see pics of my scary bald head ha ha ha!)

Anonymous

Suze- I think we all felt suspicious lumps during and after our treatment, mostly because we become so sensitized to our breasts. Plus, TN tumors can be painful, despite "conventional wisdom". Here's hoping you have an uneventful surgery and speedy recovery so you can make the CBF!

Suze35

Heidi - thanks, I know you are right. The waiting is the hardest part, and it is what it is, I can't change it. On a positive note, my nodes haven't changed a bit, except for more cording. So I will just be prepared for what news comes as best I can. I really want to make it to the CBF also!!



I plan to spend the day hanging out with the kids, then DH and I are going to dinner and a movie, so I will see you all on the other side of the surgical table!

MBJ

Suze:  Sending you many good thoughts nad hopes for the best possible outcome.  You have been given so much great advice here so I don't have much to add except good luck and I am hoping the pain you feel is the cancer dying!!!  Stay positive and plan for a great outcome.  Hugs!!!

Survivor:  BC does have a nasty way of sneeking up on us.  Now is not the time to be a super woman, it's a time to be selfish and heal your body.  Reach out to those around you who can help and support you as your job shouldn't be your first priority right now.  We have all gone through so much and know that you can come here as often as you need for courage and support from those of us who have been there.  This too shall pass--Hugs!!!!

Kymn:  You have a great attitude and your love for life and your children will be the strength to pull you through.  Call your Dr. regarding any discharge immediately as you don't want to have an infection!!! 

MBJ

Heidi & Kelben:  I so love all animals big and small and I want to thank you so much for sharing your pictures and your lives here as it just makes me smile.  The world needs more of you!!!

MBJ

I copied this post from another thread as I think it's good for us to know:

I have heard a few of my pink sisters say their doctors cautioned them against supplements high in antioxidants during treatment, swayed by evidence suggesting they can interfere with the drugs' effectiveness. You may have heard the same, and the jury is still out, because the epidemiologic data is limited. But a study recently reported (Cancer Eipdemiol Biomarkers  Prev Dec 21)  indicates doing some antioxidants from the time of diagnosis can cut your chances for recurrence, even if you take the supplements during chemo. The study looked specifically at Vitamin E and Vitamin C.

Background and concerns:  Radiation and certain chemotherapies produce free radicals, ultimately causing oxidative damage which kills cancer cells. There is widespread concern that antioxidant supplements interfere with the drugs' effectiveness by not only protecting healthy cells, but shielding cancerous ones, too.

The Shanghai Breast Cancer Survival Study. This study followed 4,877 women aged 20 to 75 diagnosed with invasive breast cancer in China between 2002 and 2006. At a mean four years after diagnosis findings were: 18 percent fewer deaths and 22 percent fewer recurrences in women who used Vitamin E, Vitamin C, and multivitamins. This was regardless of whether they did chemo and after adjustment for lifestyle factors, socio-demographics, and known clinical prognostic factors.

What does the data mean? In the words of Xiao-Ou Shu, MD Phd MPH, lead investigator of the study: "Our results do not support current guidelines that all supplements should be avoided during cancer treatments. The results actually suggest that  vitamin supplement use in the first six months after breast cancer diagnosis may be associated with reduced risk of mortality and recurrence. To my knowledge, this study is the first large prospective study among breast cancer survivors to investigate the association of vitamin use during cancer treatment and breast cancer recurrence and mortality.  The results highlight the need for more research."

Shu suggests future studies focus on variable settings and populations, and consider factors like appropriate dosages as dose information was not available on participants in the Shanghai Study, though the majority was taking recommended over the counter dosages.

Contact information:

Xiao-OuShu, MD, PhD, MPH Division of Epidemiology,  Vanderbilt University Medical Center, Nashville, TN; Xiao-ou.shu@vanderbilt.edu

Kymn

Thanks MBJ I am going to use a multi vitiam during treatment I will buy some tomorrow

Titan

Hi fight for my kids or FFMK (can I call you that?)  You go girl..It just sucks when doctors won't listen to us...you really do have to take charge of your own care sometimes..I was lucky because there was not time wasted with me but that isn't always the case.

MBJ...I take alot of supplements..I keep them all in a bowl..line them up in the morning and take them all...I probably should read exactly when to take them but I just don't...too lazy I guess!

Anonymous

Hey TN sisters, checking in.

It's taken me a few days but I'm up and about after my first TC. At first I thought it was just the Benadryl than knocked me down, but now I know otherwise. Jeez, I feel like a 100 year-old lady. The good news is my tummy seems ok (thanks to the zofran) but the tastebuds have gone and I have the intermittent bone aches from the Neulasta.

I'm trying to hang tough as much as I can, and I know others have had more to deal with than me, so I don't want to complain but I'm wondering if this is going to be like this each time or will it get progressively worse in terms of fatigue and SEs?

I never thought to ask this and no one at my onc's office offered. Just trying to gauge what I'm in for. 

Thanks for all the good wishes. I feel crappy but glad to have one done.

dawn31337

I had AC and then Taxol.  Taste was worse with the AC.  With the Taxol the off-taste was just for a few days.  Nothing really tasted *bad* just off....sugar and salt still tastes ok.  I didn't have that metal taste people complain about.  

Anonymous

Michelle- the first was the worst for me-- felt a bit flu-ish (but very minor). The others were a non-event. I was lucky-- never had to have the Neulasta shots. I do remember dry, metallic mouth and decreased taste though. Nurses just said that each infusion could be/feel different and I kept waiting for the other shoe to drop, but it never did. I breezed through both chemo and rads.

lrr4993

Michelle - My onco told me that I could expect the same SEs every time - they would not likely get worse, but they may last longer each time.  My SEs were identical every single time.  The last one seemed to be the easiest.  

slcst12

Michelle 67

I'm glad to see you on here. I've been thinking about you, hope you are doing OK.

I was on the A/C, but for me at least, the SE got progressively worse. I barely made it through the last A/C treatment on Thurs March 3rd. I'm just now starting to feel human.

For me, nausea/constipation, and general pain were the big 3. The others (no taste, not hungry, fatigue, etc I could deal with). The general pain was more than just bone pain, like, it hurt to even have my son (almost 4 years old) touch my arm lightly. Just really sore. These got worse with each A/C. I'm hoping Taxol will be easier.

Hello to all my TN sisters out there! Thank you so much for all your wise posts, I really have learned so much by reading and posting here!

NavyMom

Michelle, as others have posted, it is easy to see that everyone reacts so differently to TX.  I did 6 rounds of TAC and  2 days After TX #1 went out for dinner and dancing.  I felt great.  But then TX #2 through 6 were a whole different story.  The fatigue, constipation and general body aches set in.  It did seem to get worse each round.  But at the same time it is doable and eventually you do finish.  Hang in there.

Navy

Babs37

Michelle- For me, apart for not tasting anything, the AC part was ok, no nausea. But the Neupogen (like Neulasta) shots were hard on my bones and nerves. My upper body was just very achy and my skin just hurt to the touch for about 4 days after each shots. But on the weekly Taxol, I did not have the Neupogen shots although I had 1 day of body aches the 3rd day of every treatment. But my taste buds came back so I could taste food again and I felt fine, no fatigue all the way through the 12 weeks. My hair even started to grow back after the 5th Taxol. 

Fighter_34

Michelle just relax I know it's hard, but take meds and watch some trash TV. I enjoyed watching all the Housewives shows on Bravo. Give yourself permission to chill.

Nails and hair slowly growing in. Now if I could just get my legs together.  Doc said the sore leg muscles will gradually wear away.  You guys should see me going up stairs I look 90 years old.

Claiming health and wellness!

Fighter_34

OH another thing DETOXING!

I was told to hold off on detoxing and to just take my vitamins and a drink plenty of water. Asked why, and was told the purpose of chemo is to kill any floating cancer cells. So don't prematurely stop that process. It can take up to a year ladies for chemo to get out of our system and being TN I want all the added protection I can get.