Calling all TNs

Paintingmywaythru

Hi there. I am 56. I had my annual mammogram  in Mid-May 2011 and was called back for a look. Spot they looked at was fine but radiologist saw another spot and wanted to do an immediate biopsy. I have rheumatodi arthritis so I had to wait 5 days to get the NSAID's out of my system.On May 25th, 2011 had biopsy and knew the radiologist saw something and he virtually confirmed it by his language but couldn't actually state it.Got a call from my PCP 5/26/2011, small invasive cancerous lump with intermediate to dense nuclei.

Saw breast surgeon 5/27/11- they work fast in Boston.Had lumpectomy 6/8/11, 2  post op surgeries for hematoma  over 2 days (6/8 and 6/10) due to need to remove some of muscle at breast wall. Results invasive ductal carcinoma, triple negative, 1.1 cm, clear margins, grade 2, lymph-vascular invasion indeterminate. 4 days in hospital due to hematoma and those 2 extra surgeries- I am 57 shades of red!.

Saw oncologist Tuesday (6/14/11).Plan to start  4 courses of taxotere/cyto on July 7th with steroids night before and post infusion and neuplasta(?) injection 24 hours later. Then on to a 6 weeks of radiation.

Will get 2nd opinion at Massachusetts General Hospital on June 28th as they are doing a lot of research there and the oncologist nicely encouraged me to take advantage of the Boston Cancer Centers research possibilites and to make sure I was feeling comfortable with her recommendations.      Tried on wigs today with a friend...shocked to find I look good as a blonde!

Scary being triple negative and so glad I found this forum. Wonder if anyone has gone this route of treatment and have any suggestions. Thanks.

Anonymous

I don't enjoy walking anymore...feels like a chore and leaves me even more tired. I need low impact  "exercise", like swimming. I stay active, but seem to pay the price. Not sure what the answer is. Curves closed here and I use to do that. I don't know, I just am living a Catch 22, I guess. We're opening our pool soon, so maybe I'll try swimming again...except that I hate cold water, our pool is very big and I don't even want to think about the heating cost to keep it at 86. Retirement has made me a cheapskate....3K for a season of heated poolwater? I don't think so....would rather put that towards a trip! Plus, we "gunkhole" a lot in our boat and the bay/river water is usually quite pleasant. Gosh, I feel like such a whiner... need some cheese to go with it, I guess.

Time for bed...been doing lots of physical stuff getting horses & RV ready for our trip to Blowing Rock for carriage driving. Need some rest!

OBXK

Saw the neurologist about my neuropathy, he put me on Nortriptyline - an old anti-depressant, for the pain. I'll let you know, if it helps.

Tomorrow, I see the anesthesiologist, who will be working with my eye surgeon next week, when I have my cataract removed (a little cancer treatment gift). I feel like the only thing I do, is go to the doctor!!!!



Healing thoughts to everyone in treatment.

Wishing you all well.

Sugar77

Paintingmywaythru - welcome to our thread. You'll get a lot of support from the wonderful women who post on here. I also had Taxotere/Cytoxan with Decadron steroids and Neulasta shot the next day. Chemo is no picnic but it's doable. Glad to hear things are moving along quickly in terms of diagnosis and treatment. Take care and don't hesitate to ask us any questions you may have.

Paintingmywaythru

I need to work. I am a therapist and se individuals and couples and worry that I won't be able to keep my schedule. I don't want to disclose my Rx as I don't think it is appropriate but I am concerned there will be days I won't feel well. I hope to get chemo Friday...go to work Monday int he afternoon for 6 or 7 hours but many of my days are 9 or 10 hours long...is this do-able?

Thank you...it does feel so scary and overwhelming but I am doing well given everything and my daughter marries July 2nd!

Lynn18

Paintingmywaythru:  I am sorry for what you are going through, you are right, triple negative is scary, however, it sounds like you have found some good doctors and good that you are stage 1.

I had my chemo treatments on Fridays.  I would feel pretty good for a couple of days, but around the 3rd day I wouldn't feel that well.  It seems like many people are able to keep working though.

Heidi:  Hope you get rested up for your trip--sounds like fun. 

sylviaexmouthuk

Hello LInda,

I just wanted to say that I was very sorry to hear about the death of your daughter.Take great care of yourself at this very difficult time of your life.

Best Wishes,

Sylvia.

Jules59

HeidiToo,

Enjoy Blowing Rock.  The trails there are beautiful.  My DH and I were hoping to take our horses there and ride now that I am through with chemo, but I have re-excision surgery sceduled for July 8.  Still trying to see if I will feel like fitting the trip in.

Suze35

Heidi - enjoy your trip! I wish I had some advice to offer you :-(. All I can say is I empathize.



Painting - my worst days were 3-7 on AC. Maybe schedule your chemo mid-week and see? They can always tweak your schedule by a few days if needed. Welcome, I am so sorry you are here :-(.



OBXK - ugh, such a rough time! I hope the neuropathy improves and that your eye surgery goes well!!



If I missed anything or anyone, my apologies. This thread moves so fast!



~~~~~~~



What an awful week! My washing machine busted yesterday, and it's a cheap fix, but the part is in California, so not until Wednesday. Ugh.



And even worse, we have freaking BED BUGS! OMG, I am so annoyed! DH travels for a living to NYC, and so... 1500 to treat my house. ARGH!!!




I can't start my chemo until July 6th...19 more days, and I can't believe I'm counting down...



All this with a stinking Ativan withdrawal headache.



But I don't care because... My car is here, my car is here! It is so pretty, I love it!! I will post pictures later!!



Have a great day everyone!

Luah

Hi, just catching up after a week away in St. Lucia, with family... rare opportunity for us all to be together.

TifJ: Can completely relate to your emotional response. Sometimes I just glanced over at my 2 sons (21 and 18), and think... wow, what did I do to deserve such wonderful men in my life? Saw some stunning scenery while in St. Lucia, and thought, I am so glad to be alive to see this!  And last night, flying home at 40,000 ft., a full moon outside my window... all I can say is, the world is full of staggering beauty that simply takes my breath away. And I observe and appreciate it much more since my diagnosis (the silver lining).

Congrats to those with uneventful scans and check-ups and welcome to all the new ladies here... sorry you have to be here, especially at such young ages, but yes you will find excellent support. 

And last, Titan, wtf... you of all people got "moderated"? All I can say is, you go, girl! 

Kymn

Hi ladies, I am back. Its been quite a ride this go around. But only one more to go yipeeeee. I just wanted to pop on and thank all of you who kept me in your thoughts and prayers.

Hugs

Paintingmywaythru

Thank you  Suze35, I am a Susan too. They have scheduled my chemo for Fridays as I am off then but now I wonder what to do...I think that I will play it by ear. I just don't want to have to keep cancelling patients for therapy (I am a counselor) , because  they need  a healthy therapist, we need the money and because then my clients will begin to wonder what is going on.

I hadn't thought about post chemo sickness, thought it would be shortly after and had originally asked for Thursday but the oncologist isn't there then and so they wanted it on a day she was there and Friday was the day I picked. I might want to think about picking Wednesday...appears no matter what I may be feeling ill  more days than I thought.

So  are you saying that the zofran and compazine and ativan don't help  enough with the nausea, yucky feeling and you just have to get through a few horrendous days a few days after CT treatment?

To everyone I know we walk this with courage but I appreciate knowing you are all there and this is a place that we can let it all out.

Anonymous

Ah St. Lucia... The Body Holiday at Le Sport....

Here's "The Black Pearl" (yep, used in Pirates of the Caribbean) shot from the beach showing the famous phenomena known as the green flash:

MBJ

Heidi:  That is just beautiful!

TnbcRuth:  If there is a $50 donation request, I have never seen it nor paid it!  The moderator does spend lots of time with you on bodytemp.eu and once my reset "takes" I will probably pay him for his time as he puts in many hours helping people for free.

Suze:  Bed bugs suck!!!!  I hear all of your clothes have to go in the dryer, beds and furniture have to outside in the sun, all sorts of time consuming stuff.  I am so sorry to hear about that but I AM SO HAPPY YOU HAVE YOUR NEW CAR!!!!!!!!!!

Titan:  Here is the really weird thing I have discovered about low body temp:  you can feel really, really hot at 95.6, 96.5, 97.2 and in fact 98.3 and 98.9 fee very similar and the only way to know what your temp really is is to get a good Vicks thermometer with an instant read. 

This is what I think about body temperature and TN's:  I think the reason excercise helps us is it can raise your body temp so the more you excercise the better you do.  However, this isn't true for all of us.  There are many ways to raise your temp but it takes alot of effort and being concious of it and the benenfits are no more pain and brain fog (fixlowbodytemp.com).  The dr's don't even take notice of this and just blow it off but the body works at it's optimal at 98.7 and none of us are operating at this temperature.  My feeling is if we can just get our body temp up all of these SE's will go away and we will live a good long life.  Sounds simplistic but my brain no longer works, I can barely walk and I can no longer use my hands at low body temps.  I plan to fix mine because it's the only thing that has given me any hope. 

Linda:  Thank you so much for coming on here and saying hello and letting us know how you are doing.  I lost my little brother many years ago and I cannot imagine the pain and loss when it comes to losing a child.  Big hugs!!

All of the Newbies:  Welcome to this thread and you will find great support and help here!

Suze35

Heidi - the green flash!! That is a portent of good luck, I see good things for you down the road :-).



Painting - another Susan :-). Everyone's experience is different, and I'm not sure about CT, as I did AC, then Taxol with Carboplatin. What I can say is that my nausea was very well controlled, that wasn't the issue. I did Neulasta shots, which had flu-like side effects for me that kicked in around day 3. Also, I felt very drained and fatigued until my WBCs started to rebound, usually around day 7. It was cumulative for me, so by my 4th AC, it was harder to rebound. I can't quite describe the feeling, but I don't know if I could have worked those days. I know others have.



The Taxol/Carbo was much easier on me, and I didn't need Neulasta. I probably could have worked through that if need be. I also did a longer course of treatment - two months of AC, three months of Taxol/Carbo. If I recall, you have 4 treatments...it might be a bit kinder to you.



I'm so sorry you have to juggle the two. Maybe someone who worked or is working through your specific regimen can give you a sense of what to expect.

Lynn18

Heidi:  Beautiful picture.

Luah:  Would you recommend St. Lucia?  We are looking for someplace to go with our kids this summer.  It looks very nice. 

Paintingmywaythru

Katfinn, I will be having the same treatment as you and seem to be similar in stage, etc. How was your treatment? What were your side effects and how did you manage? I start July 8th.

To everyone out here, it is so good we have each other.

christina1961

Paintingmyway,

I have had six cycles of TAC which is considered one of the strongest regimes - I am self employed and have my own small business - I have worked all but 8 days following chemo.  The first two cycles I went back to work a little sooner than that, but for the most part I have rested for a week following each treatment and then worked every day thereafter.  I've had to dip into what tiny little retirement funds I have but at least I had them to rely on.  I'm worried about finances and keeping my health insurance constantly - but thank goodness I am finished with the chemo now and just have surgery and radiation to go!

LRM216

Thanks for the info on Mity - glad to hear all is well.

And to Sylvia and MBJ - thanks so much for your kind words.  I am hanging in there, some days I laugh a lot, and smile a lot at all the memories, and other days - I still can't believe it happened.  Normal, I'm sure - but hard nonetheless.

Sending love to you all,

Linda 

OBXK

Painting, I hope you are able to find just the right time to have your chemo, without upsetting your practice too much. I started to feel the worst, the morning of the 3rd day.



Heidi - great photo!!!!



Good news, the anti-depressant I started taking, has decreased my neuropathy pain!

Karen

LMT

I was diagnosed in February 2011 with TNBC--I am 59 years old.  I have had five doses of TAC, every 3 weeks, with one to go.  I will have a double mastecomy in July.  I made it through my daughter's wedding in May, and I have a son getting married in September.  Life does not stop when you get cancer!  My chemo treatments have not been too bad--fatigue and weakness have been my biggest issues.  My eyes water a lot (the Taxotere has narrowed the tear ducts), and my taste buds are altered.  I would like to hear from other women who have chosen not to have reconstructive surgery.  My reason for not doing it is my age, plus I am very small-breasted, so wearing prostheses will not be that different from wearing padded bras (and my husband is fine with my decision).  Any regrets from anyone who has chosen this option?

Paintingmywaythru

Thank you LMT and OBXK. I talked to a chemo nurse today who said that they want me to try the Friday start..they want me to start right after our daughter's Wedding and that was the day they had that the oncologist was most free. They sound flexible but suggested that I see how it goes and consider taking Mondays off as that would be day 3. I asked about Wednesday but then I would be moving all my Wednesday clients around. I think I can just tell my clients  I am taking long weekends as it is summer and try to work through it but I think the wig will be a give-away to any client who isn't too self involved. everyone's info is so helpful.

Last summer I had a knee replacemetn and so many of my clients were thrown off and had a hard time with my absense so this won't be nearly as bad as that for them.

I know I will just be playing it by ear based on how I feel and I will have to work at taking care of myself rather than be ingthe caretaker.

Thank you everyone.

jeanena

hi everyone . I never thought I would be here with breast cancer. I still cantt believe that this has happened.. I feel like  Im in a dream and really want to wake up- only each time I do wake up, I remember I just got diagnosed with breast cancer. I have been on the internet continually and am so scared to death.I am not eating much because every time I do, I feel like getting sick. My doctor gave m zanax which helps alittle.I feel so sorry for my husband who is at a loss as how to help me.  I have a 2 cm tumor on my right breast at the 10:00 position. I am age 56 and it is triple negative. I am scheduled for surgery on Wednesday morning. I have decided to have bilateral mastectomies to help lessen my risk.. They will put in tissue expanders so they can do reconst later. I know that this surgery isnt fun and I am hoping for no node involvement but am not sure until after the surgery.. I went to my hairdresser yesterday and had my hair cut super short- kinda like jamie lee curtis so care will be easier. i know that I will be getting heavy chemo after the surgery but do no yet know what i will be getting. I live in sunny florida and my daughter is in med school at UF- Shands. She is getting me in with an onc there right after surgery for a consult on the chemo regime. i will also have an onc here where I live in south florida so my chemo can be given here by my home. Thankfully she will be here to help me after surgery for the first week or so. I am so scared. I dont want to die and this triple neg thing worries me so. At least it shows that my bone scan is clean and my cea 15 is normal. I have a really great surgeon who is eccellent and very kind. Im so afraid it will come back. reading your comments have been very helpful to me because although my friends are supportive, no one I know has ever had triple neg BC. thanks.. .

Suze35

LMT - I have not had reconstruction done yet, and if I get my way, I probably won't.  It is something my DH and I have to hash out.  But I really don't mind.  My BS did an amazing job, every other doctor has told me it looks fabulous.  My scars are even and minimal, and I healed well.  I find the bra with prostheses very comfortable to be honest, it never rubs or feels cumbersome.  I'd say I use it about 1/2 the time I go out.  Depends on what I'm doing.  So for me, no regrets.  Also, I recovered very easily from my BMX because I didn't have any extra stuff done.  I was literally off pain meds within 24 hours and moving around the next day no problem.  Good luck!

Painting - I think because your job isn't strenuous physically, you might be okay.  Maybe you can schedule a little down time between clients so you can just put your head down for 10-15 minutes after each session?  I hope it works out for you.

Jeanea - welcome, though I am sorry you are here.  This is such a scary diagnosis when you first hear it, and then when you search the internet it gets downright terrifying.  The good news is, it isn't quite as scary as all that stuff would have you believe.  When you read something that says "poorer prognosis," keep in mind that is relative.  The rate of recurrence isn't higher than ER+, just faster.  Once you get to 3 years out, your chances of recurrence drop to below ER+, and at 5 years out, you go back to the general population risk.  So your prognosis is still VERY good!!  With chemo and no nodes, your chances of being just fine are 85%+.  Add exercise and diet into the mix, and it is even higher.  Stick around here, this group is very supportive, even if all you want to do is whine and complain .

Speaking of whining and complaining, my poor RO got the worst of me yesterday, lol.  I was giving him tons of grief for not letting me do both rads and chemo at the same time.  He told me if he were in my shoes, he'd be doing the same thing to the 10th degree, but that I had to trust he and my MO really were trying to maximize my outcome.  Its a fine line, I just need to accept that.  Ah well, he's a good sport at least.

Hope everyone has a nice weekend!  We are either going to the North Shore tomorrow for the beach, or to Queechee, VT for the balloon festival.  Still need to get pics of my car, but the weather hasn't been behaving...

swiftbird

Painting, I was on taxotere and carboplatin. I got slight neuropathy from taxotere but only towards the very end. Not much nausea - the meds they gave me and compazine worked the first two times through, then my sister (who is a nurse asst) told me to take ativan at night to help me sleep (sleep did help!); then the last two rounds, I asked for the big dog - Emend, which was great. I worked the entire way through chemo. My infusion day was Thursday, which I generally took off, then worked on Friday (steroids!) and my bad days were sunday and monday. Which made me think maybe I should've done Wednesday infusions but it was fine. It wasn't easy, and some days I sort of just sat there but managed it ok. Miralax became my best friend LOL - doesn't taste at all, so I threw it in gatorade and managed that pretty well.   

Jeanea, when I was first diagnosed, everyone told me to stay off the internet. I of course trolled a bit and got immediately freaked out. To tell the truth, this was/is the only place I found as a safe place... to ask questions, to vent, to be silly... this is a great forum so don't be shy to use it. 

Titan, I'm right behind you on the new normal stuff.  I had my last 3 month checkup last week, and my onc said he didn't need to see me until next year but to keep in close touch if anything of any concern comes up = simultaneously happy and freaked out.  So of course, the last day or so, I feel a twinge in my sternum area and begin obsessing about symptoms (do I have shortness of breath? gee. maybe. hmm. *breathe in and out* ). I have never been prone to hypochrondiac behavior, but I find my mind going RIGHT THERE every time.  I took a claritin (lots of mold and pollen here) and it feels better. Now feel stoopid. *SIGH*  I don't say anything to anyone, so thank goodness have you ladies to share my goofiness with

Wishing everyone peace and SE free weekend!!!  

Paintingmywaythru

jeanana..I am new like you to, find I am OK then terrified. Already met my oncologist, plan to start taxatere and cytoxan on July 8...scary for sure but I too am holiding on to the 85% as

Suze 35 mentioned and doing my own health stuff of iron and vitamin d and e and a daily vitamin to get me in the best shape. I walk daily and if my lumpectomy hadn't required to more surgeries would be swimming at our ocean home in RI. I am also 56. I thought all had come together. My daughter is getting married, son going ot college, we were going to put our Boston house on themarket , my husband got a new job after 22 months laid off and we would move to the shore and commute to work and then boom. But, I reached out and a friend started a lotsahelpinghands websie for me and I feel truly blessed by the outpouring of love and support.

Swiftbird you give me hope...my chemo is Friday but I think I will  take the first Monday off and see how I do...they have alrready given me Rx for zofran, compazine, lorazepam, steroids... and said htere is more to come if needed..Did you get neulasta one day post chemo? Any problems witht hat

I make art and have several shows coming up so I use this to focus. 

I am on the internet constantly too and think I need to stop.

I will get a second opinion and avail myself of research opportunities at MGH on June 28th. I am 3 weeks 2 days from diagnosis and haven't settled down.

We will make it through. We are in a similar place  and age and we are all here praying or meditating and thinking about each and everyone of us getting well.

I feel the love and support of the women on this site and you will too.

Anonymous

-Jeanene- I have been *exactly where you are now (age, dx, xanax, etc.) I don't like to revisit that very dark time, so I don't post much except to add a funny picture or mention a personal story o try and lighten things up.

This is what I will say though, and you have to believe it:

You can do this, but it won't be easy.

There will be hard days, but you will get through them.

The terror and stress *will* subside, but only time can do that.

You are stronger than you think.

Trust me, I know.

mccrimmon324

Hey Ladies,

Hope everyone is having a good weekend.  I have a question for everyone.  How many of you have joined support groups in your area, not this website?  My husband is getting annoyed with me because I haven't really looked into any.  I like this website, he doesn't understand it he thinks its like too much negative info on the internet.  My problem with joining a support group in my area is I live is SW Florida and most of the population is a bit older than I am, I'm 41 years old and am the youngest by far in my neighborhood, I'm also TN.  I don't really think me going to a support group where I'm the youngest by far and TN is going to be beneficial for me.  I will feel like I stick out and I don't like it.  I'm already the youngest at the cancer center when I go for my appts.  Its really scary to me and it doesn't help when I look around and see no one else in a similiar situation.  I seriously don't mean to offend anyone of any age, I was just trying to say that I have unfortunately found a lot of women my age on this forum when there are none living close by to me.

Anonymous

mccrimmon- Husband's don't always know what is best.... do what you are comfortable with.

swinnie971

I'm glad i just read your post, how is your wife doing now? I'm just about to start the Gemzar & carboplatin in a few weeks. i had a 8mm tumor removed followed by fec & taxotare chemo which did not work. I had a reacurrance in my lymphs 10 out of 18 were positive, hense the new chemo i'm about to start. i've been feeling very scared as my oncologist has said the Gemzar & Carboplatin is a stab in the dark and she doesn't no if it would work. So i'm pleased to here it has worked for someone else Sarah