Calling all TNs

TiffanyF4

Congrats to moniKav on the last chemo tommorow!

MBJ

Tiffany:  Some dr's don't know this, but you also need Vitamin K1 in order to absorb vitamin D3 properly, so you should be taking itin combination.  I take 8000 iu daily! 

(((SUGAR))))!!!   Great news!!! In my heart I knew you would be okay!!!  Just in time for the weekend.

Laurajane:  As we get older, our bodies don't absorb Vit D as easily, so even if you get alot of Vit D via sunlight your body may not be utilizing it (see above).  Also, if you use sunblock or sunscreen you aren't getting the benefits, either!

MonikaV:  OMG Congrats on being done with chemo!!!

monisch

Hi Ladies,  wow  havent been on here in days.. and its hard to catch up to all the new stuff here. You girls are really active.  I have a question for yal.  Has anyone had problems with their periods since getting chemo treatment ??  I had my reg. period in Aug. then exactly 20 days later another period which was very heavy and after that one i have spotting 15 days later. This is driving me nuts  and wondering if anyone else has had this. I never spot and always am on time.. the 28 day ritual.  Im confused     Othe than that im haning on.... day after chemo is crappy....

but im hanging..... 3 more to go and then radiation.

 hope yal are doing great...

riley702

My periods haven't restarted post-chemo, monisch. I'm 49, though, and that's the age my sister hit menopause, and my Mom was even younger (46?), so the oncologist said mine may or may not come back. But that if it did, it might be very irregular at first, so that sounds like what you're going through.

Sugar77

I had started my period two days before my first chemo treatment and that period seemed to go on forever.  My next one was six weeks later, despite the fact that mine were always 28 days apart...like clockwork.  Anyway, that second one was in January and I've not had once since.  My mother went into menopause in her '50s but my half sister hit menopause around 45. My GP checked my estrogen levels in June and they were much lower than a women who is menstruating regularly but not low enough for me to be in menopause so maybe I'm in "in-between-pause" lol

Meece

First the vit. D, my onc re-tested mine last week because my last test was at 25.  She wants me to take 2000 iu daily.  My insurance covers the test, probably because mine is low.

When my periods came back post chemo, they came back with a vengence.  10 days on, 14 days off, or sometimes closer.  I waited 14 months post last chemo to see if they would straighten out.  I finally had the Novasure procedure to eliminate the problem altogether.  I have no idea if the heavy frequent periods had any relationship to chemo, but it sure was inconveniet.

MicheleS

yay Sugar!

yay Monika!

My periods didn't come back and then I had an oorph.

xxoo

MBJ

My last period was in November, when I started chemo.  I had horrible, heavy ones but I am still in "chemopause" and my Onc says it can take up to 8-12 months for your body to figure out what is going on with them and if you will get them back.  Part of me says, yay, no more, the other part is I am so not ready for menopause!

JenC

I have not had a period since the end of June.  Get the hot flashes and all.  Really hoping they dont come back.  I am not having any more kids so if I have to go through the hotflashes now with chemo and all I hope its done.  Really dont want to go through the night sweats, etc. again.:)

Jwatrlily

Sugar!!  What wonderful news.  I am so happy about your results. It makes my heart smile.  (((HUGS)))   I had a total hysterectomy in 1995 so no issues there for me.

Juanita

starling

Sugar - YAY! So Happy for you!!

Monika - YAY! No more chemo!!

I had my last AC yesterday, so today a little tired, little quesy, but not too bad, very grateful for my dear friends here! Next I do 3 dense rounds of Taxol, then Rads. Not the beginning of the end, but the end of the beginning! YAY for me!

Love and hugs to you all!

cc4npg

I'm LEGIT SUPER happy for all who have gotten through chemo, gotten their hair back, and been rid of this nasty disease for all practical purposes. YAY!!  I hope I am one day in that group.

As of now, I'm SUPER confused.  My diagnosis is, at the least, very strange in my opinion.  There's really no history in my family.  It's a bit odd to be triple negative and grade 2 tumor, not that I'm complaining about the grade!  Being diagnosed with no lump is also a really good sign of early detection, and to date I still have no lump.. being diagnosed Sept 2 with surgery Oct 7.  BUT what's stranger to me... is my BRCA test came back.. BRCA2 positive.  BRCA2 is supposed to be ER+, while BRCA1 is triple negative.  Not much is known about BRCA2, or not that I can find.  So I don't know what to expect.

Anyone BRCA2 triple negative?

MonikaV

Just got back from my last chemo. I am starting to feel a little tired ,but my heart is filled with Joy. I have a question: Has anyone from this page done a Nipple sparing mastectomy? Spoke with my Onc today and she said it would be fine we just have to monitor it every six months. But the surgeon she refered to me said it is not a good idea. I already got 2nd opinions scheduled for next wed and following monday. But just out of curiosity.... Have a great day ladies. Thanks for the support!

kad22

Hard to keep up with you ladies! First of all The Secret is crap and I am a Librarian!! ;-)

MoniKav - Congratulations on being done!! YEAH!!!!

Lynn18  - you made me laugh so hard! (Netflix)

Sugar - so glad everything is ok!

I am in the group where I have gained weight and wish I wouldn't have - darn steriods - yes I am blaming it on that!! LOL

So happy to be done with chemo - thanks for the warm thoughts - just can't wait to feel somewhat normal again! Come on hair - GROW!!

Swanny

When you miss a few days - you have to read a page for every day you miss.  Everyone is so great about answering everyone's question.

Congrats Sugar on the good news.

Congrate MoniKav also.  I will join you on Sept 30th (my last chemo).  Can not wait for it to be done - I feel horrible for a whole week after (I am on Taxotere).  The last one cannot be soon enough. 

Swanny

Oh and I lost weight too.  About 10 - 15 lbs.  Which fluctuates - the week after chemo I lose 5 pounds - the 2 weeks after that I gain some of it back.  Overall it is a loss which is good since I am overweight - but who cares about being overweight these days when you have more important things to concentrate on.  Guess BC has changed my opinion on some things.

Lynn18

cc4npg:  I don't know too much about BRCA2, did your doctor recommend that you talk to a genetic oncologist about that?  

Sugar77:  Glad to hear your good news.

Congrats MonikaV on being done!

Kad22:  Congrats to you also for being done with chemo.  Glad I could make you laugh! I think humor is great, but I am not skipping the chemo and radiation. . .I too am gaining weight, I'll blame the steroids also.

jenn3

Whew.......I missed a few days and had to catch up.  Sorry if I'm late with a few comments.

Monika - Congrats on your last chemo!!! My breast surgeon (who is the director of the dept) suggested NOT doing a nipple sparing mx.  I think he felt that it was a saferd to take it all.  I know it's a hard decision, good luck. 

Kad22 - congrats on your last treatment!!!

Laurajane - whoo hoo....so glad to hear you're halfway through Taxol. I too had weird food cravings and like you it always sounded better than it tasted.  I'm not a big fan of fried food, but during chemo I wanted fried shrimp and oyster po boys and got them every week and every week about halfway through (or sooner) I'd stop eating because it just wasn't good as I thought it would be.  Thank goodness my family was patient with my crazy cravings. 

Kittykat - My hair did start to grow back during Taxol, but my lashes and brows waited until after I was finished treatment.  The upside is that my eyebrows have a better shape now than before chemo and my lashes are super thick now. 

Sugar - belated (((hugs))) and glad to hear all is well.

jwatilily - I think we've all had crazy intestinal issues from chemo. One minute the traffic is moving at full speed down the raceway, next minute there seems to be a blocked roadway and nothing is moving and both seem to bother the exit.  My daughter has some gastrointestinal problems and was told to take probiotics daily to keep things moving at a regular pace.  I tried it during chemo (you can either buy it in pill form or get in in something like Activa) and it worked.  I would still have a little upset, but not nearly as bad.  Good luck.

Heidi - Love that new picture

I lost weight during AC and them gained it back with Taxol - Ugh!  I did walk almost everyday during chemo no matter how I felt.  Of course some days I could walk more than others.  The last 4 weeks of chemo were tough - the neuropathy had gotten so bad that my walking came to a halt.  Then I started back to work, radiation knocked me on my butt and I got lazy. I have started walking and moving again.  I will say that I feel better no only physically, but mentally when I get out and walk.

laurajane

MBJ- I forgot to ask my onc. pharmacist today. I'll try and remember to call for the test tomorrow. See what they say. I would love to start taking K and D today. I wonder if it is classified as an antioxidant? I have been a sunscreen "goddess" (LOL) for years now so you are right not much vitamin D that way.

To all, I, like others have been in chemo pause since about the end of June. I was to the clock also before chemo. These hot flashes and night sweats drive me crazy also but not enough to take the drugs they recommended. It's just kind of like being shoved into a sauna unexpectedly. I do find myself checking the thermostat regularly thinking my air isn't working. I wouldn't mind not having to go through all of this again also.

So happy for all of you finished with chemo, congraatulations. Had my 6th Taxol today so I'll be up and wired for the next 48 hours  I'll apologize now for any future rambling that may occur in the wee hours. 

riley702

Double post. Sorry.

riley702

Warning - long rant ahead, because everything's up in the air again and I hate that!

I saw my oncologist today post-LMX, and I'm not happy. Although my biopsy classified me as Triple Negative, the final post-op path report showed my tumor (as a whole) to be weakly ER+ (8%). I'm also on the borderline of whether or not to do rads, so he's sending me to a radiology oncologist to see what he thinks. He also said, "You need to start Tamoxifen right away if you don't do radiation. Otherwise, you can wait until the radiation is over before you start the Tamoxifen." There was no discussion of options, alternatives, level of benefit for my particular diagnosis, and I was a little shell-shocked, so I was home before I started thinking, "Wait a minute! Is this necessary? Do I have options?" I'm sensing a second opinion in my near future. And, FWIW, I haven't been BRCA tested, as I'm the first and only person with BC on either side of the family.

I had a grade 3 tumor (and the Ki-67 after the MX was 62%, up from 34% at the initial biopsy) that was 4 to 4.5 cm and shrank to 1.1 cm after an aggressive, nearly 6 month chemo regime. I was in a clinical drug trial that treated me as if it had spread beyond the breast when there was no clinical evidence of any after many scans and tests. I had a LMX with deep, clean margins, and my lymph nodes (2) were clear. I'm having the right breast removed prophylactically in 6 months. Do I really need Tamoxifen? On the slight chance a few cancer cells escaped the breast anyway, wouldn't having been treated for 6 months (8 rounds) with 2 drugs used for mets most probably zapped them already? How can I find out whether Tamoxifen would reduce my risk of recurrence, and by how much, as compared to doing the rads, but not the Tamoxifen? Would the recommendation for Tamoxifen be different if I were post-menopausal? Would an Oncotype DX evaluate Tamoxifen's benefit for me, or is that only for deciding about chemo? And since my MX was 2 weeks ago, is it too late to ask them to test my breast tissue for an Oncotype DX now?

I've heard about the risks and SEs of Tamoxifen, and I'd really rather not subject myself to it if it makes very little difference in my outcome. Does anyone have suggestions for specific questions to ask my oncologist? What questions should I ask the radiologist? I admit I'm a bit of a control freak and therefore do not like surprises and everything being up in the air again when I thought there was a plan in place. I'm truly not freaking out as much as this sounds - I just need info and I'm kinda thinking/typing out loud here. And I was wondering if anyone else has been through something like this, and if so, what did you do and why? I'd love some feedback here, because you guys have had to make difficult decisions, too, and I think you all 'get it' in a way that people who have never had to deal with this disease ever could.

PS - Does this mean I have to stop posting in the TN threads? Because I still think of myself that way.

laurajane

Riley702- I can understand your concerns. I am fairly new to all of this so I can't answer your questions. I just wanted you to know that I'm sending positive thoughts your way. I think a second opinion is important. That is something I have learned from so many of the women on this site. I am sorry you are having to deal with all of this additional stress. I hope someone with more experience and knowledge post back to you soon.

riley702

Thank you, LauraJane. I just remember how miserable it was right after dx and I didn't know what would happen next. I felt like I was flailing just trying to catch my balance. Getting plan in place helped tremendously. Now I need to find out as much as I can so I can make an informed decision.

Anonymous

riley- FWIW Sloan-Kettering does not even take Ki-67 (mine was 99%) into consideration (or so my surgeon said) because the level can vary so much within the tumor, thereby creating  results that can be inconsistent. So, they don't put much stock in the actual number. That made me feel better, as my high level always concerned me.

MBJ

My Ki-67 was 98% and my prognosis is considered good.

Riley:  Get a second and third opinion!  From what I understand, the lower your risk of recurrence the less of a chance Tamoxifen will do anything.  If you have done other things to ensure that your cancer won't come back such as diet change, supplements, excercise, and are also doing alternative stuff, it may not be necessary but it's a decision only you can make.  I thought that I would need radiation and after getting 3 opinions it wasn't necessary.  With all treatments there are many varied opinions.  Ask around and see who the best in the Oncology field is.  My experience is when you go to a radiologist, they will recommend radiology.  I had an amazing relationship with my Onc, and he didn't want me to have radiation as he felt it was extreme for my case and he was going to send my path report to his radiologist friend to get a second opinion.  You need people in your court who are going to go to bat for you when it comes to life changing decisions and I hope that you will find the support and help that you need to make an informed decision.  Also, check out this site:  breastcancerchoices.org regarding alternatives to Tamoxifen.  Lots of good info there.  Good luck!

Anonymous

jenn3

hheidi -where do you find this stuff??? LMAO

riley -you really need another opinion.  I feel like I know a lot more than I did one year ago, but it seems there is always more to learn.  From what I understand you're either classified as TN or not and you're treated as such.   Tamoxifen won't help TN and like you said are the SE's worth it? I wish I could give you a better answer, but I don't have one.  (((hugs))) 

Sugar77

riley - that's a tough decision you have to make.  I wonder if there is a thread on bc.org that might already have a discussion on that topic?  If not, perhaps you could pose the question in a new thread as I'm sure you'll find other ladies who have been in the same situation.  I wish I could help but I'm afraid I don't know what to suggest.

Oh Heidi...you always make me smile! 

Lynn18

riley702:

Wow you have a lot to think about.  I have heard that receptors can change.  Hopefully someone here with knowledge about that can give you a little advice.  Sounds like a 2nd or even 3rd opinion would be a good idea.  I don't know much about Tamoxifen but I can understand you not wanting to take it if it won't have much of a benefit.  I hope you will continue posting here and let us know how you are doing.  Good luck to you!

Heidi:  Thank you, humor coordinator.  I will be celebrating breast cancer awareness month by finishing chemo and having surgery.  Yep, I'll be aware all right.

MBJ

hhfheidi:  Thank you so much--I needed a good laugh today!