Calling all TNs

Luah

Fighter: (((hugs))). So hard to lose a parent... and the father-daughter relationship is so unique and precious, it leaves a very big aching hole when it's cut short. Sending you best wishes and hopes that, in time, the ache diminishes... 

Lovelyface: Hope you get good news soon, the waiting can be awful. Please try not to attach too much significance to the tumour markers; they are often not reliable indicators in a non-metastatic setting, which is why so many oncs don't do them. As for the thyroid, maybe it could be the rads - I know many women here who have gone on to have thyroid issues of one sort or another - but thyroid risk also increases with age for any woman, BC or not.  

Mags: Sorry you're feeling low... I think we can all relate. Hope it passes soon. 

Beccad: So good to hear from you. And LUV... Hope the Xeloda works its magic for both of you.  

Titan

Fighter..I meant to say to you earlier that I'm sorry about your Dad....my dad is nearly 80 and I just can't imagine not having him around...and Father's Day being yesterday...again..I'm so sorry.

melissa119

Hi ladies. I have been following the thread but not really posting lately. Today I am having a rough day thinking about my a/c treatments that start next week. I think the anxiety over this is sometimes worse than the actual reality but I am making myself sick over it. Anyway my husband is taking me away for a couple days to try to get me mind off of it for awhile. My parents are being great and taking our kids and dog. Hopefully I can enjoy the time away and try not to think too much about BC. My biggest worry about starting treatments is not being able to enjoy the summer with my kids and take care of them. I guess I will find out next week what kind of side effects I get. Have a great night everyone. Thanks for listening to my rambling :-)

mags20487

Hi Melissa.  Your anxiety is sooooo understandable.  I was terrified (yet oddly excited) when I started chemo.  I did Taxol first then the AC 4 of each every 2 weeks.  At least I felt like I was fighting the beast with all I had.  I did extremely well on both regimes...only vomited once and that was my very last tx.  I think my body was tired going into that one and that is what got me.  With the AC I had very little other SE's except that food tasted aweful.  You will do great I am sure.  Enjoy your time away and a quiet weekend.  We are always here to listen to rambling, venting, all out tantrums and whines.  See my above post haha

Maggie

onvacation

Must be in the air today!  Hate that I'm down and others are too!  I figure 99% of the time I am pretty upbeat and positive, so we all deserve a day!  

(((HUGS)))) 

Tazzy

Good luck Melissa.   Like everything with bc - the waiting is the worst.  Totally agree with Mags... once chemo started you knew that you were fighting it with everything.   Go and have a couple of wonderful days away with your DH and both of you try not to fret too much.    Take care and let us know how you get on.

Hope60

Hi Melissa-  I totally understand your anxiety.  I just wanted to tell you that for me, the reality of chemo was never as bad as what I'd cooked up in my imagination.  It is do-able, and some women sail through it.....may you be one of them!  In the meantime, go away and enjoy yourself, and try not to worry.  I wish you the best of luck.

Titan

Ah Melissa..the first treatment is the worse because you don't really don't know for sure what to expect....glad you are going away for a couple of days....your dh sounds like a good one..remember to post on here after you are done...we want to hear how things went...I soo remember..the first treatment (and things went well)...and coming home..just waiting for something to happen...nothing did..except I felt a little weird..but that is normal for me...lol...just be sure to keep those nausea drugs handy and take one at the first twinge of anything..very important to keep ahead of this stuff...besides feeling a little weird I had very little se's at all...remember we are here for you!  Remember that during chemo you can watch tv, text, eat, drink, read, talk , sleep.....walk around if you want to...remember to chew on ice during the adriamycin...they should give you an icy or a cup of ice...be sure to ask for it if they don't...,prevents mouth sores...

Trying to talk my friend into signing on here and coming on this thread..I told here that we were waiting for her...we will see...it's very hard to come on here for the first time and talk....it's accepting the whole BC thing..and that isn't easy as we all know...

Titan

and to you guys that are down...it is MONDAY after all...bc or not..Monday's stink...

Cocker...I couldn't walk or run today cause we had thunderstorms..however..I will double up tomorrow..I promise..thanks for pushing me...I need it!

JazzyJ

Hello!!! I am having my first treatment tomorrow and scared out of my mind!! A/C every 2 weeks (4x) followed by 12 consecutive weeks of Taxol. I feel so brave one minute and so scared the next. I am sooooo thrilled to have found this thread and thank you all in advance for the ear..... And I loo forward to offering my heart and support to all of you as well! Wish me positive energy tomorrow :-)

mags20487

Jazzyj...you can do this....go and kick some cancer butt!!!

Maggie

JazzyJ

Thanks, Mags!! I keep telling myself that Chemo is our silent army fighting the enemy for our freedom. Then I think about all the cr@p that I've read thus far... panic some, maybe shed a tear in fear, eat chocolate and then start the cycle all over again. I am soooo grateful for this blog. And this is just the beginning.....

borntosurvive

Good luck Jazzyj. I did the same but only had 4 of each.  I was very sick after my first A/C but was put on Emend for the next 3 and was much better.  I found keeping a journal and writing down all my side effects helped me to see the pattern of my good and bad days.  Watermelon helped me with nausea and the sugar was good too.  The metalic taste was hard to get use to but you'll be okay.  My son told me that there were little super heros in me that were flying around and killing the bad germs.  Whenever I wanted to quit or felt sorry for myself, I'd picture those little super heros flying in my body.  You'll do just fine.  Keep us posted.

LuvRVing

Watermelon helps the chemo nausea on many levels.  It's liquid, and that's good - hydration is critical, it helped me get rid of the nasty taste, and it's loaded with lots of good nutrients.  Yes, it has some sugar - but it's better than the mac&cheese that many people like to eat during chemo!  I ate tons of it, and still do. 

melissa119

Thanks everyone for all of the advice, words of wisdom and support! Tazzy, Titan , hope60 and Mags i really appreciate the advice! It is nice to hear it is doable! Still having a hard time but I know I am strong! Have to be for my kids! I will think of all of you next week during my treatment. But for now I am going to enjoy some much needed time away with my DH! He has been great thru everything including my choice for a DMX and he needs a break too!!

Jazzyj....That is the same exact treatment I will be starting next week. We are Almost on the exact same schedule. I hope it goes well for you tomorrow. Look forward to hearing from u on how u did.

Tazzy

Remember to hydrate, hydrate, hydrate - sure helped me tons.  I was really lucky, not once did I get nausea.  Also I used to rinse out my mouth after meals with a mixture of cup of warm water and tsp of baking soda.

Good luck ladies.  Will be thinking of you.

OBXK

Jazzy & Melissa - good luck with the chemo! I promise one day it will be a faint memory !



Fighter - I am so sorry, for your great loss.



Annie - what a lovely story! I've always had my own bedroom. Hope your cold leaves soon!



Wishing everyone a great tomorrow!

luvBngGma

Hi, ladies. I have been following this thread, as well as the April/May chemo thread, off & on, and am so grateful for the support , advice, and encouragement. Will have my last FEC tx (every 3 wks) next week, then 3x Taxotere. I struggle with nausea and dizziness for about 10 days, and a crazy feeling like my body is separate from my head. Is that crazy? I am supposed to have a second lumpectomy (margins were clear, but barely--1mm). I am struggling with a decision on whether to have DMX, & not have to wait for a return occurrence. Am I being over-reactive? The whole TN thing scares me-- don't want to do this again! Anyone chose the prophylactic mastectomy? And, did you still have radiation?

Lovelyface

Hi Everyone, a big hello to the ones who are waiting for chemo, results or coming here after a while.  I just wanted to update everyone on my BS visit.  I told her that it has been burning, paining deep under my arms and a few days back, there were lumps and bumps.  She is a very soft touch doctor.  I have to ask her to dig deep.  Anyway, she told me that the burning is an after-math of rads, a very normal thing.  The pain and lumps were from an inflammation of some sort.  She said the bad cells died during chemo, the good cells are now thriving and not allowing the bad cells to get alive again. I did not quite understand this concept.  She told me that whenever I have symptoms like this, to wait 4 weeks before going to see her.  I think she is right regardig inflammation, as on my blood test, Eosinophils is high at 6.9 (up to 6 is normal) and it seems like this goes up on your blood test if you have an inflammation in your body.  I have been thinking, looking back at the order of symptoms, pain, etc. and have realized that maybe this is all caused by the two biopsies I have had for thyroid.  I swear I feel they are related.  Even my Onc. had told me that after having a breast biopsy, the tumor markers go up.  Well, maybe that is the same with thyroid biopsy.  I feel there is a connection between thyroid hormones and reproductive hormones.  The pain, lumps, bumps have subsided, however the burn is still there somewhat, but I am greatly relieved tonight with at least this visit.  Greatly relieved that the doc doesn't think it is anything of concern. This is the first time though in 2 years that it is burning.

Luah - I always look for your wisdom on these subjects, thanks so much for writing.  Thanks to all others who worried about this with me.  Now I am waiting for the second result, hopefully tomorrow.

NavyMom

Hello LuvbngGma:  My stats are similar to yours.  I had excisional lumpectomy to get a biopsy.  Once BC was confirmed I opted for BMX.  I knew that I would be looking over my shoulder the rest of my life if I didn't opt for both brests to be removed.  I have never regretted my choice.  It is a very individual decision, but you must choose what is right for YOU.  As far as rads, at the time I was dx, rads were not recommended unless 4 nodes were positive.  So I did not have rads.  But did had 6 rounds of chemo that started 6weeks after BMX.  Good luck with whatever you chose. 

Good morning to everyone.  Another  steamer here in the Midwest.  Supposed to be 97 today.  YIKES! 

mags20487

Hi Luvbnggma--whew...the choice of BMX vs lumpectomy is a big one.  It is such a personal decision also.  At my DX my husband looked my surgeon in the eye after he gave me the option of breast conservation (LX) or UMx or BMX and asked him if it were his wife what would he recommend?  HE said bmx.  I also have metaplastic tumor so that was what put us over the edge...wanted that cancer factory out.  Turns out my "clean" side had LCIS which may or may not have become cancer later.  I have never regretted my decision.  Sometimes I look in the mirror and get very sad at my appearance as I have not had recon yet but that is happening hopefully soon.  I also did 35 rads with the recommendation of my docs.  It is a tough decision but take a deep breath and take some time to make your decision.  You will choose what is right for you!!!

Maggie

riley702

Joyce, lumpectomy wasn't an option for me, but I did choose to have the other breast removed prophylactically for the same reason; I didn't want to be looking over my shoulder for the rest of my life. My tumor was very aggressive and I felt I'd dodged a bullet already. I didn't want to push my luck. When they told me it was up to me whether or not to have radiation, I opted for rads also, even though my nodes were negative. But that's just me; you decide what's best for you.

luvBngGma

Thanks, all, for your input. I was at peace with my prior decision for lumpectomy, but that was before I learned it was TN. Today I am calling my MO, for a new SE that is troubling me. I have a terrible pain on left side, just below shoulder blade. I thought it was just gas but it has continued since Sunday. Sometimes hurts from lower abdomen all the way up. At its worst, hurt all way across chest and up into neck area. Really hurts if I take a deep breath. A little concerned today, since it still hurts after sleep, and is one my port side. I hate that every pain I have makes me think that I have more C everywhere, even tho I had the bone scan. What a mind game this disease has created in my head ,,

Hope60

Jazzy - thinking of you today and sending you positive thoughts for your first chemo. 

Lovely - I saw my BS last week, and I had a similar complaint.....not the quite the burning you described, but my BC breast sometimes feels really warm.....I've even had to ice it down.  My BS also said this was an after effect of rads, and quite common.  So maybe that will give you even more reassurance. I've noticed that the hot weather seems to aggravate it....I had the same thing last summer.  Also went through a similar thing a year ago with a thyroid nodule/biopsy....all turned out well....hoping you get good news, too.

Fighter_34

I choose a double-MX for the reasons stated before and also because I didn't want to go through rads. I wanted as much treatment as possible without doing too much. I hope I am making sense here. Either way it is a personal choice and you have to make the best decision for your situation.

You can always PM me if you have any further questions.

Lovelyface you are so in tuned to your body. Thyroid issues are very common for women. I hope you get some answers soon waiting and the unknown sucks.

Titan-I am trying to keep up with you. I have increased my walking, but getting up to running would be nice.

Cocker-I love to log in and read your posts. Your posts are so well thought out and constructed.

Thank you ladies for all your words of encouragement.

Luah

Joyce: Could it be you are compensating for your surgical side and placing strain on the non-surgical side? Or there's a problem with your port? It's good you're getting it checked out by your doc.. I know our minds always go to "more cancer" but I'm sure there's another, much more benign explanation. Good luck. 

Edited to add: Also, try not to second-guess a decision that felt right for you. For what it's worth (quite a lot I think), leading TN docs do not consider TN status to be a consideration in surgical decision  i.e. there may be circumstances would indicate a Mx for a woman, but TN status isn't one of them. If you're feeling conflicted, talk it over with your BS and see what he/she says.   

Melissa and Jazz: You can be chemo pals here! Thinking of you as you embark on your treatment.... we never know how our body is going to react, and it's perfectly understandable to be afraid of that unknown, but trust me, chemo is not like how the movies depict it. You can expect a few days of feeling tired and fluish, but hopefully other side effects will be manageable. My advice? Drink lots of water - day before, day of, day after. And take the pills exactly as instructed!

Lovely: Glad to hear the doc could put your mind at ease. It's amazing what our mind can conjure up - I've had back pain, off and on, and sometimes severe... figured I'd give it 2 weeks before calling the doc, and just as that time was up, the pain has now subsided. So I can put away all my fears until the next symptom pops up - lol.  

kathyrnn

Sorry, I haven't caught up yet, but I want to jump in for LuvBngGma. I wouldn't think cancer first, I'd be thinking of the port. Please keep calling your doctor, and make them check you out immediately. It may be something very benign and simple, but get thee to the doctor!!!!!

luvBngGma

Thanks to all for your input on the pain--apparently it is a common SE from the cytoxan. Gas pains! I take Prilosec daily for GERD so will be doubling up on my Prilosec, and adding whatever I can find that works for me. If OTC products dont work, she sd we can try Nexium. Nurse said it will likely continue thru next tx, thankfully next week is last one for FEC. Then on to new SE with the Taxotere in 3 weeks. Any suggestions for avoiding the Taxotere issues are welcomed. I remember reading about icing the nails during...is it just during the infusion?

I am so thankful that I found this thread, the support is immeasurable.

kathyrnn

Welcome Jazzy and LivBngGma



I was reading all the discussions regarding lumpectomy vs. MX. I highly recommend that you read this article from Dana Farber's magazine Turning Point. I will post the link for the whole article, but there is one section that especially caught me. (wouldn't let me copy, had to write the whole dam thing). I had wondered why so many people who had no lymph node involvement were relapsing? The following excerpt from the article gave me the answer (I thought of posting it when I read it, but it reinforced what a crap shoot this beast is, and I found it depressing). I highly recommend that you read the whole article though, because it explains why they make the recommendations they give us.



The lead in to these particular paragraphs are about how radical mastectomy used to be the standard.



"The reason for such disfiguring surgery was just an excess of caution against cancer spread, but a fundementally mistaken understanding of the nature of breast cancer, Dr. Iglehart continues.



"Back then we were taught that breast cancer begins in the breast and spreads through the lymph nodes to the rest of the body. Now we know this is not true. Tumors that arise in the breast may spread to the lymph nodes, but they may also spread through the blood stream, both routes, or not at all. The key is to determine which type of breast cancer a woman has - by looking at the genetic make up of the tumor cells and other factors - and treat it accordingly"



http://www.dana-farber.org/Newsroom/Publications/Holding-promise--Targeted-approaches-for-breast-cancer-treatment.aspx



Titan, so sorry for your friend, but I hope she will come join us.



LuvRv- that blog post was exceptional! I especially loved the gardens. Hoping you get a shot at the new "smart bomb"



Mags, Onvacation and Tazzy - hoping for something wonderful today that will lift your spirits



Lovely - wishing you good news and hoping you bring your stress level down. (stress is not good for the body). Like I told you I've had thyroid nodes since my 20's and I'm still alive and kicking.



Melissa - I hope you enjoyed your mini vacation, and really it usually isn't half as bad as your imagination. Like Tazzy said, drink, drink and then drink some more. I'm going to try and post a picture to show you what I was doing after my second A/C, but I doubt it will work ( I can't find any damn green tree to insert pics with, lol. Maybe because I'm using mobile)



http://m350.photobucket.com/albumview/albums/kathyrnn/flashmob-1.jpg.html



Well ok, at least it should take you to the picture.



Hugs to those I've missed!

sagina

Hi everyone, whew you all move so fast!

Melissa and Jazzy good luck, I too remember the first time anxiety.  In the blink of an eye, you'll be on your last one.  I did AC and Taxotere at the same time, well the red devil dripped first, then they changed the bag.  My IV premeds took me to  lala land each time.  I never was able to stay awake.  I also was given an RX for EMEND, that was great! My MO said to never let my stomach go empty, that's when nausea sets in.  If water is gross to you, find a substitute for liquids fast.  My second round I hadn't been hydrating, and the constipation was crazy....I learned fast and drank Koolaid of all things after that.

Lovely~I'm still burning and hurting.  I'm on a thread here called "After Rads" and funny enough we all started complaining about similar things six months to a year after treatment.

As far the lumpectomy vs mastectomy, my BS was so polite in the way he worded this - "You have AMPLE tissue to do a lumpectomy, if you were a B cup we wouldn't be discussing this." Yep, I have LOTS of tissue.  Being a plus size patient created it's own set of strange things, like if I had a mx, I would have needed a reduction on the other side....because I'm large, my stomach muscles weren't good enough for the PS to take fat from the stomach....then he talked about tissue expanders and radiation and told me to expect the skin to fail....by the time that appointment was over, I was certain I was getting the lumpectomy.

You all are right about how we make the decision for ourselves.  I think I had too much time to think about it. I had all 6 chemos then surgery.  My BS also told me I would increase my recurrence by 1% by not having the mx.  I stopped short of asking him what the % is for recurrence though!

Being TN I did start a food journey to increase my immune system and strengthen the cells to fight off cancer. I know I can't prevent it, but I fight like hell.

Sorry for the Monday blues yesterday, hope the sun found you all with smiling faces today.