Calling all TNs

Anonymous

Headed home to "lower, slower". Picking up pups in the morning. Can't wait!

Oh yeah, added more pics and a few video...same link as before.

Fighter_34

Bab37- the Metaformin trial is a good one to be in. I am in it also. I have my pill in my pocket to take now.

TiffanyF4- that's for dropping in.

Gillyone- Truly is!!! A very very unlucky Crapshoot at that!

Suze35

Hi everyone!

Heidi - your pictures have been just amazing.  What a wonderful vacation!!  I am living vicariously through you at the moment .

TiffanyF4 - welcome back, and congrats on getting to the 6-month appointments!  That is great to hear. 

I get my second dose of Abraxane tomorrow.  I have to say, I had ZERO SE's from it that I could tell, but I appreciate the information bak so that I can be prepared.  I know this stuff builds up, so I'm going to appreciate these early good days. 

I'm almost off the steroids - thank goodness!  My head is finally clearing, and my mood swings are starting to ease.  Awful things.

I'm also happy to say that the symptoms from my cancer have remained well controlled - they aren't getting any worse - so I'm hoping that this treatment will give me a little time with the Stable Boy.  The MO said I'd know if they got worse - I'd need more meds.

Good thing for today - it feels like a "years" day, not a "months" day .  And my DH finally got the second garage door opener up, just in time for the downpour tomorrow!

SlayingTheBeast

New here... I was diagnosed March 10, 2011 (age 29), my son was just 4 months old. Found my lump while breast feeding. Stage 1, node negative, Grade 3. No family history and neg for BRCA genes. Finished dose dense regimen of 4 A/C followed by 4 Taxol, every other week on July 12. Finished 33rd rad treatment on Sept. 30. Follow ups start in Nov. Trying to adjust. Still no periods, but hoping they come back. Haven't had them since I got pregnant (last one was Feb 2009). My husband and I are hoping to have another child (or 2). For those of you who got your periods back after treatment, how long did it take? Anyone have children since treatment???

Fighter_34

Angelia-My period has just started and it's heavier than normal. Took about 8 months to see it again.

Now the kids dept. I am not hoping for anymore. I already have two little ones running around and knocking everything over. I am interested in preventing that but I will not take birth control.

Thanks for posting.

SlayingTheBeast

Fighter_34- thanks for getting back to me. I'm sorry to hear your periods are now heavier than ever. A fellow BC survivor (hormone positive) said hers came back and the first three days she would have horrible cramping. I wonder if it's common for it to come back worse after chemo? I hope it doesn't stay that way permanently. How old are your little ones? My son is going to be one on the 25th. In some ways this year has gone by so fast, yet in others I feel like I've been through 10!!

minxie

Hello my fellow TNS ladies! Suze and Laurajane, hope things are going well for you - I always look for your updates and think about you.

Folks, I have my 6 month onc check up next week. This usually has me besides myself with anxiety, but so far I'm hanging in there... I did want to querey him about the latest news/breakthroughs in prevention - anything in particular I should ask about? Metformin? Androgen receptors? Anything, anything at all out there yet for us TNBCs?

My onc wanted me to lose 10 lbs before this appointment and instead I've gained about 8. I am sooo bummed    I am thinking perhaps since I've been forced into chemopause I now have the metabolism of a post-menopausal woman? I've cut back on carbs, exercise, eat less, nothin' happening. I've never had so much trouble losing weight before.

I recently saw the 10 year survival stats for stage IIa cancer - only 50%. I was shocked. I have always been told the 5 year sats were 75%. I had no idea that my chances of being alive in 2018 are only 50/50. Add TNBC to the mix and who knows... Anyone have more info on this?

EDIT: it was this article in the NYT that mentioned the stats

http://www.nytimes.com/2011/10/18/health/views/18cases.html?ref=health 

I'm taking some STD from work and starting intensive PT for my messed up back and shoulders. The PT group specialized in post BMX post node-dissected women with chronic pain like me. I am very hopeful that they can fix this. 

maywin

Those must be some really old statistics!!! I think the survival rate now for IIa is 85-90%!

ksmatthews

my dr told me if you make it to the 5 year mark that your chances are 95%!  Hmmm makes me wonder.  Anyways I am not going to worry myself to death.  I am gonig to enjoy what time I have!  I know woman who are in there late 70's who are BC survivors and now they can do more than they could then.

michelleo13

Minxie, I think those stats are way off. I'm iia and everything I've heard is in the 90% range. I notice the author doesn't quote a source for the numbers.

I had a mild reaction at my Taxol infusion today. It was very strange. Hopefully, it won't get worse with the last two. I want to get this over with!

Luah

5-yr breast cancer survival rates are close to 90%, according to a credible source:  http://seer.cancer.gov/csr/1975_2006/results_merged/topic_survival.pdf  Granted, that's not broken out for TN, but it would include various stages.

minxie, you are almost 3 years out and that is a very good milestone for us TNs!!

mitymuffin

Minxie, I read that article also, and found it upsetting and puzzling.  It certainly doesn't agree with what my Docs told me (80% survival for my stage 2b). There is something we don't understand about those statistics. 

Many people in the non-breast cancer world do seem to think that breast cancer is now always treatable and curable, so if the article generates some contributions to research, then I'm glad for it.

Titan

Good for you Tiff!  every 6 mos. is good..I'm assuming that is with your onc?  I still see my onc every 3 months..I asked him when I could go to 6 and he said it depended on my mammogram next May...Like you..I may be nervous about this..at the same point..I just want to let it go..put "it" behind me..

Oh man...I KNOW that we have to be watched carefully...for a long, long time...but sometimes I just want to say F>>It...and just move on.

Here I am venting again...ha ha..my daughter's wedding kept me so busy for so long that I didn't have time to think about other things..now I'm on here ranting..ha ha...some things don't change do they.

good to hear from you Suze..love ya girl...and welcome to our new ladies...

Paintingmywaythru

Hi All,

How were you able to get into  the metaformin trial?

I would like to see if I might be a candidate for it.

Those NY Times stats seem to be off but I guess it all depends on the person. I also heard that when you reach the 5 year mark your odds go way down.

I also have finally got my brain a little together and wish I had done TAC vs TC although it was not what my onc recommended.  It was what the consulting onc suggested but then she backed off when I said my onc suggested TC and she said that would be good too.

So I am at MGH now and I really like my onc but she only follows me every 6 months. She said more was not necessary....interesting as we all get different info. She also is only recommending a 3 D mammo annually, so I wonder what people think of this.

Ttitan I will post one of my daughters wedding pics. I have to put it up on my blog or facebook to get a URL first.

Feeling a little nuts with the open house Sunday and another coming up this Sunday...don't like living in a hotel like environment.

Send out a prayer for my neighbor who had Stage 1 endometrial cancer 5 years ago but learned just recently that she has a tumor in her lung and cells around her aorta ( don't know what that means) but she is estrogen positive so she has been put on medication. She was told the oncologist did not think he could successfully do a surgery. I spoke to her tonight and we both were in tears.

Love to all of you.

Laura Jane and Suze thinking of you and sending good thoughts and hugs.

DenMac

Hello Fellow Survivors

I just joined this site and am looking forward to connecting with others.  I had neo-adjuvant chemo 4 A/C and 4 Taxotere.  Only could do 3 of the T because it gavve me burning rashes up my arms along with a host of other fun stuff.  When diagnosed I had two nodes involved with a 3 cm tumor.  I had my lumpectomy last Thursday and was told yesterday 10 nodes removed were all clear and they found 1 mm of cancer in my breast.  I am ecstatic by the news.  Now I need to heal, get that drain out and start 30 days of rads.  I didn't know what triple neg was when first diagnosed and probably that was for the best.  Now I have read more bit by bit,  and I have been very positive through all of this and hope to move onward with the same positive outlook.  I love reading the posts of the strong and amazing women who have fought this fight.

michelleo13

Welcome DenMac! So glad to hear your great news! I found it interesting that you had neo-adjuvant surgery. Your initial stats were almost identical to mine based on the biopsy results...3 cm tumour with 2 nodes involved. In my case, I had surgery first followed by adjuvant chemo. When they did the lumpectomy it turned out while the lump was 3cm, the tumour was only 1.6. It was attached to non-cancerous tissue which was a good thing because I could feel a 3 cm lump and wouldn't necessarily have felt a 1.6 cm lump.



I always find it interesting how different doctors have different approaches to similar situations. Which one is right? Who knows? I've given up trying to sort out the various chemo regimens and who gets what! I'm learning more and more that b/c treatment really involves a lot of educated guessing on the part of our doctors.

Marni

I just started another thread but think i should be here, I have one more chemo to go,(out of 4) of Taxotere and cyclophosphaminde (TC), but the SE have been really bad, with rashes and tightness in the chest etc. etc. Has anyone else stopped after just 3 treatments, I am due to have Radiotherapy starting on 14th nov. as well.

Also gaining heaps of weight, does this go?, maybe its just because I don't have the energy for much exercise

laurajane

Hi all of you wonderful ladies. I've missed you and mainly been catching up on PM's. It wil take me a couple of days to catch up. Thank-you for all of the well wishes. All of the newbies, Welcome! This thread has been so wonderful full of caring women that are going through the same thing. I'm saddened that you are here but we can all beat this FC.

MBJ- I hope your move goes smoothly and can hardly wait to see you. Could you please pack a little sunshine in one of those boxes. IT's getting cold and today was rainy.

Heidi- I hope your trip was wonderful. Missing your humor. Thanks for the dose.

Tiffany Congratulations on your two years. That's fabulous and I'm toasting you.

Michelle13- I had great results with Acupuncture relieving my SE's from Taxol.

I've started seeing a healer. It seemed like the Halavan (Which for me is close to A/C SE's) started to work and then kind of puttered out. My onc said it is like my cancer has spit out all of the chemos. For all of you new gals don't let my post scare you. Most of these lovely women have had great results with all of their chemos. My healer thinks that I will live a long time and so do I. I have this week off from chemo and will decide by next Tuesday whether I will do more. Once I'm off I am going on the whole foods diet and taking bookoo herbs etc. All of the things I'm not supposed to take while on chemo. I think it is time for me to take my FC into my own hands. I have begun chanting. Have you guys heard me? I get pretty loud sometimes. I have also been doing a lot more meditating and even wake myself up in the night intentionally asking this cancer to not wreak havoc in my house. I am trying to release all anger and hostility and fill my body with so much love and light that there is no way anything as evil as cancer can find a comfortable spot in this house of love! I'm obviously still taking my Morphine. LOL.  Life is good. feeling a little better. The Halavan kicked my butt!

The best thing that happened to me today was visiting with all of you on this thread. I can feel your love and thank-you for that.

Wishing all of you sweet dreams and hope you all have a good day tomorrow full of smiles. 

SlayingTheBeast

Anyone experience pains in their breast or arm pit where they've had radiation? My Dr. said this is normal(??) Also, I feel a bump under the scar under my arm where the nodes were removed. Dr. said the U/S I had in May just shows scar tissue -no tumor or enlarged lymph nodes, but that if I feel that it is "changing" it wouldn't be unreasonable to have it rescanned to compare. Sometimes when he responds like that it makes me feel like I am being paranoid, but I can't help but worry sometimes. 

MBJ

Unfortunately the area under the arm is going to be lumpy from scar tissue and mine aches all of the time.  We have had radical surgery on our bodies and this is something we have to learn to live with.  My cancerous lumps felt very different from my scar tissue lumps but sometimes my brain goes there and I just have to stop myself and remember tat my US was clear on the other breast and that I have no symptoms since my MX.  Hugs!

OMG-Moving in a few days and I am soooo overwhelmed.  Hugs to everyone and talk soon!

mccrimmon324

MBJ - Good luck with your move.  We moved from PA to FL about 6 years ago, it was very overwelming but you'll be settled in before you know it. 

Why did you choose Kentucky?  I'm sorry, now I forget where you said you were moving too?  

Suze35

LauraJane - so good to hear from you .  It sounds like you have found a wonderful resource to help you with your aches and pains - but don't let your doctor off the hook!!  If you are feeling pain, make sure she hooks you up with a pain specialist who can help you.  I just love your outlook, and your strength gives me such a boost.  Hugs to you.

Slaying - MBJ is right, it is unfortunately our new normal.  Bumps, lumps, aches, tingles, you name it - anything we would have ignored before now seems so ominous!  Don't give a second thought to your doctor - if he told you to keep an eye on it and rescan if you are concerned, that is exactly what you should do.  Proactive - even if you feel paranoid - is all we have to be in control of this mess.

MBJ - Oh so exciting!  I've moved over several states in my life - Florida-Michigan-North Carolina-East Coast - and it is so new and wonderful, even with all the stress.  The knowledge that it will ALL be new, full of possibilities, always made me love it.  Good luck with the final move!!

DenMac - welcome, and what wonderful news about your response to chemo!  That is definitely cause for celebration. 

Painting - I know it must be hard to not look back with regret, but I don't think you made a bad decision skipping the AC necessarily.  It is such a hard chemo drug on the heart, and it isn't as effective for TNs as the Taxanes from what I understand.  We always second-guess ourselves, I can sure relate to that!  I'm surprised you are on 6-month visits at MGH!  I'd think they would want bloodwork at least quarterly. 

I am so sorry to hear about your friend.  My thoughts are with her, and you as well.

Marni - welcome.  I gained about 20 pounds on chemo - the steroids made me ravenous, and all I wanted were carbs, carbs and more carbs - and not the good kind!  The good news is once chemo was over and I didn't do the steroids, the weight came off as my eating habits changed.  Hang in there.  Even if you only do a 10-minute walk around the block, it is something.

~~~~~

Treatment day!  Having some back pain today, likely because I stayed up half the night working on needlepoint for my kids, lol.

Good thing for the day - after treatment, DH and I will have a nice quiet dinner in Boston.  It is the one nice thing about this day, we get to spend a little time together with good food, and then come home to the chaos.

laurajane

MBJ- again I hope your move goes smoothly. How exciting!

Slaying- when my cancer came back I felt a hard pea size lump under my armpit on a wednsday, and then a couple of more that Friday. I think if you feel anything like this request a scan. Then you can rest assured it isn't anything.

Suze- I hope your chemo continues to go smoothly with no SE's. More important I want it to work!

MBJ

Laurajane!  I missed your post!  I cannot wait to get there, settle in and see you.  My friend here in California who is Stage IV has been working with a healer and has had great success.  When I did my research, Morphine can compormise the immune system so ask your dr. about Tramadol instead.  Go to LifeExtensions.com re: the morphine.  Hugs to you and if anyone can beat this, you can.  Hugs!!!!!

Teka

laurajane,

You've always shown us such grace and sharing that regardless of staging that home is on this thread.   I'll never leave.

Lovelyface

Laurajane girl, your bright light is reaching me here.  Your words just brightened my day today, so thank you.  I also feel that you will live a very long, healthy life.  Just something I want to share with you - According to the Hindu Holy book, "Geeta", referred to as the song of God, it says that all that "a human being really needs to do is to do the deeds, take action with a clear conscience, pure heart, pure intention".  They should not look for the results of their action.  The results of the action is in the hands of the creater only.  Taking action towards healing your body to the best of your ability with the knowlede that the creater has provided you, is what you are doing.  Leave the results to the creater.  So good to hear from you.  Thanks for the inspiration today.

Lovelyface

Slaying - I am one year 3 months out of treatment and recently started feeling a lump in the scar tissue area.  MRI, Mammo and ultrasound didn't show anything.  Although the lump actually showed up after the MRI and Mammo.  The US was done to look at the lump and they couldn't see anything in that area either.  I have very sharp pains and lumpy feelings all the way under my arms as well.  I even have sharp pains in the other breast as well.   I have been to the radiologist, nurse practioner, surgeon and radiologist oncologist, they all said it is the scar tissue maybe swollen from the heat of the MRI.  This happened around August 16.  I have since settled down thinking they all can't be wrong.  But I swear, I feel the lump.  They also felt the lump but one of them told me that biopsies are invasive, don't do it.  The surgeon actually told me that it takes 3 - 5 years for cancer to develop and that I will glow in the dark if I get any more scans or tests done.  She basically told me that radiologists make a lot of money doing all these scans, and that I should save my body.  When she said that cancer takes 3 - 5 years to develop, what does she mean by that?  What about the fact that TN statistics say that 1.9 year after diagnosis is when it statistically can come back.  They all contradict each other, my God, so confusing.  When I told the radiologist that this new lump thingie, it comes and I can feel it sometimes, other times I don't feel anything.  He told me that BC won't do that.  He is so very wrong.  In my experience, that is exactly what a cancerous lump does.  This woman at work who got lately diagnosed, the first thing she told me was that she could feel it sometimes, other times, she couldn't feel it at all.  What are we to believe?  I am shocked at the contradicting things my providers say to me.  I am just not doing anything, no biopsy, no scans, just hanging in here, waiting for an MRI in January, 2012.  Should I get a biopsy ladies.  Also, lately I am having a headache.  Sometimes I think it is from the free weights which I have been doing lately, the pain goes in the neck or around there somewhere.  And other times, I can feel it pulsating or burning near my right ear.  Could it be brain met?  Oh, what should I do?  I have become so numb, not doing anything, just waiting, not sure for what?  Anyone else feels like me?

Luah

LJ: So wonderful to hear from you. I hope the healer is helpful, you really deserve it!  Does your onc have some other chemo options up his/her sleeve? What do they advise? Obviously this disease presents some really difficult choices - it's so crappy that you have to deal with it... let the strong spirit prevail. 

Suze: Good luck with your treatment. Hope you and hubby have a wonderful dinner.

MBJ: I've lived in the same city for almost 40 years. To be honest, I can't imagine picking up and moving and yet, something makes me want to do it too - a new start, adventure etc. All the best with the move. But take it easy on that slimmer body of yours!

Marni: Sorry you're having such a tough time - are your doctors okay with you carrying on?... because if there's a way you can, I say go for it! The crappy SEs, weight gain etc. will eventually disappear and you'll be in a healthier, happier place than you are now.  

Slaying: yes, lots of aches and pains linger. I've had the odd shooting pain in my lumpectomied (new adjective, gals) breast, and it is very tender if touched firmly. Lots of scarring. My docs are very vigilent as am I. If you have any doubts, ask for a scan.  

Denmac: Congrats on such great results! The great thing about neo adjuvent is that you know it worked.

I've missed others on this active thread, I know. Hope you are all doing okay.

Summer38

Hi Ladies, I don't write often but I read every post and think of you all often.

Titan - the wedding pics were beautiful! Suze - I'm glad your SE's are minimal and I pray they continue that way. MBJ - Good luck with the move - so exciting! Hope it all goes smoothly.

Heidi - Iceland looks beautiful! LJ - Think of you and praying for you everyday! You are an admirably strong woman - kick some cancer a$$! Slaying - I had the same treatment and my period came back about 5 months after my final rads.

Welcome to all the newbies - you have found a great bunch of women for support. Stay strong.

{{{HUGS TO ALL}}} 

mitymuffin

LauraJane, glad to hear from you!

Susan