Where are the tri-negs!
Comments
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Hi
I was happy to find this post.
I had a mammo March 07 that was fine
I lost 30 lbs and found a lump in left breast in Oct.
I was going throug surgery for reputered hemmorids and let it go until Nov.
Had mammo lump did not show, had ultra sound where it Finally did show. 3 cm
Had another mammo the only thing that showed is the clip that they placed there at the time of biop.
I was dx 11/26 triple neg stage 2b grade 2 IDC
had biop of 1 lymph node that came back positive had braca test came back neg (yea)
I signed to participate in a clinical trial. I was placed in the standard treatment I am taking 4 cycles of taxatore every 21 days then neulasta shot the next day then 4 cycles of A/C every 21 days the surgery then rads(will decide how many after lymph node surgery)
The first 2 treatments and shot were fine. I was just a little tired and had mouth sores.
The tried one I really had bone pain the 3 days after
I will be going to my 4th dose this Friday I will be 1/2 way through my treatments.
It is uplifting to see you gals post and let me know there is a light at the end of this journey
Thank you for sharing with us
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Hello all,
Another triple negative here. Dx Feb 07, mastectomy March 07, dose dense 4 AC then dd 4 Taxol. Finished chemo in August and 28 rads Oct. 4th. Post treatment Pet and CT's showed all spots resolved. Having blood work every 3 months, all is good so far but unhappy with only having future scans if symptoms arise. 2nd opinion dr rad and medical onc recommend Ct's at 6 months out and PET at 1 year. Hoping to change my local oncs mind about scans.
At dx I had supraclavicular nodes positive and positive nodes in center of chest but not considered stage IV mets because had not crossed the mid-line of the body.
Trying to worry less about recurr. but that 50% keeps slipping into my mind. Glad to hear from those of you further out that time helps with this worry.
Happy to find this post!
Wink
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Hi to my fellow triple-negs...I was dx late July/early August 2005...Today was my birthday and it was a beautiful day here in Brooklyn and I was so happy to still be here...I often visualize the many women from these boards as I walk (and walk and walk...)...I sure hope we are all together with nothing but good luck from now on...BC-wise I am okay...Am still being scanned every 6 mos for possible lung mets...but so far have been very lucky...no change since initial scan of diffuse lung nodules over a year ago...meaning no mets right now (knock on wood)...I too was never offered taxol back in Oct/Nov 2005 when I received chemo; just 4 dose dense AC. Although I got ridiculously sick after 4th AC and couldnt have done Taxol even if it was offered...I still worry about not having the extra assurance of this treatment...I will second GQMa's question...Does anyone have any info on why some of us were never offered Taxol? My love to all the brilliant women here.....
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I'm still here.
I don't post on this thread much since I was dx with lung mets. Don't want to be a Debbie Downer! But I am doing great!
Watson
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Hi Watson,
I was just reading your post and it reinforced a concern I've been thinking about lately. Sometimes in support groups, we can unwittingly imply that everyone has to have a positive outlook.
Thinking positive is great and there are lots of people out there who only want to hear us be positive. It is my hope that everyone who posts here feels that they can share the hard stuff with us.
I hope they can tell us when they are having a bad day. No one has all good days! How much better is it to know that when you are down someone is going to help you up or maybe we will just come down where you are and sit with you.
A positive attitude helps us to get through all of the medical stuff, but when members of the group feel uncomfortable sharing about the hard stuff, we lose the whole purpose behind the support being offered by our members.
I have experienced the wonderful women here coming quickly when called to help their friends. I think we are all here for support and because we want to help others taking this journey too.
Just wanted you to know I was thinking of you tonight......
Warmly,
Sadie
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Yes... we all have some (or lot) of bad days. Hopefully more good than bad. Yes! I choose to have more Good ones.
Good to hear from the ladies who don't post much. Again wishing for you, gentle treatment and many good days to enjoy while your still at this dumb cancer thing. Let us know how your doing along the way.
I'm having a bad day today. I always been able to tell when my cancer is growing. And I can feel a spot under each arm pit that has one spot that hurts pretty strong. For me not a good sign. I have a PET scan Thursday and get results next week. I can no longer do chemo because of severe nerve damage. This does not leave me a lot of options.
Living in hope,
FlaLady (Still a Debbie upper!)
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Floridalady,
Sorry to hear about your new development. Hopefully it is just your mind going into overdrive.
I just hesitate posting sometimes because everyone gets so happy hearing about the 3 yrs and more survivors. I almost made it to 3! lol
And not to be an alarmist, but if your oncologist doesn't do scans, you might ask them to. My oncologist scans only when symptomatic. I had no symptoms, my tumor markers were (and are still) perfect. The only reason my lung mets were found was due to an unrelated CT scan of abdomen. It picked up the bottom of my lungs and showed a 'spot' in one of them. That lead to oncologist doing a chest CT. Six spots in all. Then had lung biopsy and yep, it was lung mets.
But like I said, I am doing well on Xeloda. I hope it's working!
Watson
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I'm around, too, but like Watson, posting on the mets board mostly. I agree with Watson about scans being done only when there are symptoms. I had developed bronchitis, and pushed for a chest x-ray (dr. didn't think it was necessary.) Two enlarged nodes were found. They weren't part of the bronchitis at all, and are still not symptomatic. Otherwise, I'd think I was in survivor-land coming up on three years. la,la,la,la,la.
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It's interesting to hear comments from Brenda and Watson on scans. My onc doesn't believe in PET or CT scans unless there are symptoms, BUT he does have me do a chest X-ray once a year (to coincide with my MRI) and digital mammo once a year (staggered by six months with the MRI). I'm almost 15 months from my diagnosis and 14 months from my lumpectomy, but who's counting! -
Hi Watson, I have been following your posting since your mets. Wishing you the best. May this drug burn it out quickly. Don't forget about us over here. Being triple negs ladies, it's sometime hard to hear another has mets, but... You ladies keep us up to date on what is happening out there, if we need additional treatment along the way. Your sharing may help us make good choices if we should need them too. I'm weird that I have mets that are not discussed a lot on the mets site. I feel I don't "fit" anywhere right now. (this could be a good problem?)
As for scan...I think I glow now. I've had 26 scans in 2 years. Because of all my recurrences they scan me every 3 months.
Flalady
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Hi Watson, I have been following your posting since your mets. Wishing you the best. May this drug burn it out quickly. Don't forget about us over here. Being triple negs ladies, it's sometime hard to hear another has mets, but... You ladies keep us up to date on what is happening out there, if we need additional treatment along the way. Your sharing may help us make good choices if we should need them too. I'm weird that I have mets that are not discussed a lot on the mets site. I feel I don't "fit" anywhere right now. (this could be a good problem?)
As for scan...I think I glow now. I've had 26 scans in 2 years. Because of all my recurrences they scan me every 3 months.
Flalady
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Hi, I'm also TN and going through tests/scans/blood, over lump coming back in original site. Just like RN2teach I had the tumour removed before chemo, but I didn't know that there were other ways of treating it. Example, didn't know to wait and see if chemo would make the tumour smaller, so ended up with 1mm margins, which I found out about at the beginning of rads. So we are checking everything over, I'm very lucky that my Back Doctor is doing this for me because my cancer clinic seems to have let me slip through the cracks, I thank God everyday for Dr. Emily and say a prayer for her.
But reading above I was surprised that triple negs get Avistan as well, now I have to get more info on that. Finished chemo Nov and have lots of bone and joint pain from that, and rib pain from rads, it's weird because I didn't notice that right away it happened about three weeks after rads were finished. Triple neg is scary to me and it's great to hear about the women who have gone a long time without reocurrance. Without this site I think I would have lost my mind a few times. My goal is just normal life again go to work enjoy weekends off, just normal and I pray for that everyday. Pearl
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Good Afternoon Tri-negs,
I am tri-neg also Dx 10/21/07 Just lurking like some others it is nice to see some long term positives as I just had tx#3 of 4 of A/C and Avastin (clinical) to be followed by 12 weekly doses of Taxol with Avastin every 3 weeks followed by rads. I have only just begun my year with BC.
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My oncologist did mammo's, digital MRI's and annual chest xrays as well. It was a random CT scan that picked up the mets.
Watson
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Wing,
We are doing the same treatment. I begin my taxol monday
Teresa
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I agree with Sadie (thanks for your post!). We don't expect every post here to be positive... that isn't the nature of cancer--esp. tri-neg. Brenda and Watson, sending warm thoughts your way.
Your experiences help those of us who are recently diagnosed to manage our treatment better and we thank you for that. But there are still so many uncertainties... we just have to find a way to deal w/ them and what better place than here where we understand what each of us are going thru?!
Take care all, Paula
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Hi All -
Finished with treatment here - wondering what happens now- my doc doesn't do testing....hugs
Susie
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Hello Fellow Trip Negs -
I haven't posted here in awhile .. most of my posts are on the Recurr & Mets section. Even there, I've posted less while in a 2 wk limbo on a CT scan and then a PET scan ...
My mets were dx'd less than 1 year after my orig dx and having bi-lat lump's and finishing 38x rad'tn. My SNB was and is still clear despite mets ... My CA27.29 has always been normal!
My mets (first liver, then liver mets gone, then lung, now liver mets again) have NEVER given me any side effects! I hope it stays that way.
The only reason I got that first scan (after being denied several times), was when I again asked when I was dx'd with recurr bc. After the mets dx, I've been getting scans quarterly and when on a clinical trial, it was every 8 wks. I hope I'm around long enough to worry about the rad'tn!
2006 was the year of treatment: 7 dose dense AC, break for radio-frequency ablation of reduced liver mets; 5 Taxotere & Carboplatin.
I was NED for almost 20 mos! After the lung met was found, I got on the PARP Inhibitor clinical trial. It worked great for 6 mos. For me, it was very easy - and I hoped to be on it many years. Unfortunately, with "progression" in my liver, although my lung met was stable, I was kicked off the trial.
Now, I'm back in the "research mode" trying to figure out my next treatment - targeted therapy, chemo and/or RFA again. A liver biopsy will be scheduled soon.
The thought of going back on chemo is dreadful ... Although it's not the life or death aspect of this bc ordeal, but my formerly long hair has finally, after 18 mos, gotten to a length and style I like (shorter than before, but still) - and while I won't base my chemo decision on the side effect of hair loss, the idea of going through THAT again really sucks. It nice to feel and look more like myself (although 20 lbs heavier since chemo) ... The hair loss is such a visible statement of cancer ...
It's scary. My mom had a 13 yr battle with bc, including two primaries, 5 yrs apart ... and she passed about 2 years after the bc went to her lungs and liver at age 59 in 2000 ... From revieiwing her medical records and knowing that she was not eligible for Tamoxifen, I know she was at least er/pr - , but probably a trip neg, since this is the side I got my BRCA1 mutation from.
Like Watson, I don't want to be a "downer" on the Trip Neg thread. I know the idea/fear of mets is scary, let alone if it happens ...
FlaLady - Hope you get good news on your PET scan. Thanks for re-starting this thread.
MMC - Yes, I have also gotten the e-mail from www.tnbcfoundation.org
CRC - Geez! At 23, you're way too young to have to go through the bc ordeal and mast ... It sounds like you made your decision before the genetic test came back. Considering your family history, I would guess that you're also a BRCA1. Have you received your results yet?
Shirlann - Congrat's on being NED for 9-1/2 years! What was your original dx and treatment?
Isityouisit - Gosh, 18 yrs post-bc to get another primary ... That had to be hard when you thought it was all behind you. I know that bi-lat bc is one of the indicators of BRCA as is pre-menopausal bc. I hope your daughter, with her knowledge that she is BRCA1 is able to escape the overwhelming odds. If you haven't gone to the FORCE (Facing Our Risk of Cancer Empowered) at www.facingourrisk.org, it's a great site for those who are BRCA positive or otherwise at high risk of bc and oc.
RN@Teach - You and your DH both being dx'd with cancer in such a short time ... My heart goes out to you ... That is way more than one couple should have to deal with ...
Everyone - Wishing you good health ...
CalGal
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CalGal,
I was wondering. What was your intial treatment? Did you have chemo?
Teresa
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Teresa -
On my initial dx, my treatment was:
Surgery & Rad'tn.
Bi-lat lump's (Invasive on left; DCIS on right), SNB (all clear). My tumor was 2 cm. I was borderline for chemo, and as an older newlywed wanting kids, I let the SNB be the deciding factor re: chemo. Since my SNB was clear, I did not do chemo.
No one said that bc could also pass thru the blood and it was only later that I found out - so I had a false sense of relief and security when my nodes were clear - which is why I try to let others know.
I had 38x of rad'tn. I did not have any scans - and when I asked, I was denied until I found the recurrence ... and even then, I had to ask, it was not offered.
CalGal
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calgal,
just got up to date on your parp trial and looking for what the next ace is going to be for you...
you are an incredible warrior and i applaud you while i stand up in my chair!
keep pedaling sister, you are amazing....
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Loved reading all this. Happy to know so many of you are coping and thriving. My daughter was recently diagnosed with IDC, 3-, 3.5cm. She's 34. Just completed 2nd of 4 cycles of A/C, then 4 of Taxol, dose dense. The day I sat here and figured out what she had was a very hard day but you all give me hope and a few laughs and a few tears (this is life after all!) Bless you all and lots of love and prayers for you. :-)
Elaine
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I went to rad onc yesterday and good news, I only have to do 16 tx not the 30 first told. Apparently in this case it pays to have little boobies. Won't start until June after chemo is done. yippee
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CalGal- what a rollercoaster ride you've been on the past 2 years! My heart goes out to you. Wishing you strength as you make decisions about your treatment.
Susie- One message that I'm hearing from our sisters who have mets is that we TNs need to take charge of our treatment--make sure our docs are up on the latest research and aware of the need for diligence in monitoring for recurrence. Maybe we can't "protect" ourselves from mets, but we can at least stay on our toes... I will be pushing for regular scans when I finish treatment.
Wetcoast- sounds like you're a little ahead of me... I should start rads in late May. What is your chemo? I just finished 4 rounds of AC (DD), start Taxol x 4 next week.
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Another triple neg here - not feeling as confident as you guys, but not for medical reasons. I'm almost one week past 2nd TC tx out of four. First day I was able to go into the office. Guess I'm discouraged by how hard #2 was and the fact that they say it'll get worse as it goes on.
I was hoping to work part time to preserve my benefits during this time, but now that seems endagered too because the institutional definition of "part time" isn't the same as the kind of part time you need when you are on chemo - totally off some days, totally working the next. It's like just when you think the establishment understands, you realize it doesn't. When will they stop trying for one size fits all?
Sorry to be quadruple negative here, but I'm in a new shock right now. -
I'm 1+ year out from Dx, 8+ months out from Mx, 2 months out from Tx... All these milestones. I'm counting my NED status from the mastectomy date so I'm heading up to my 1 year NED anniversary. Triple negative BC sucks. BC sucks period.
CalGal, I'm sorry you've been kicked off the PARP inhibitor trial. It sounded so promising. Will you be able to get back on once the liver is under control or is it even relevant any longer? You've had one heck of a time since your Dx. I think it's time for some good news for you.
Hang in there guitarGrl. Two more to go and you'll be done. You know the drill by now... get plenty of sleep (use medication if you have to), drink plenty of fluids, eat small quantities of appealing food...
I found days 3-5 the worst but slugged through my desk job. I was physically present and about 10% productive.
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CalGal- Wow you have had a rough time. I hope things get better for ya. Prayers going out
Guitar gal- Chin up we will get though this praying for you
I had onc appt wed. I ask if I can have a mri after 4th treatment which is tomorrow. Yea 1/2 done. He said we can do a ultrasound. I want to know how well the taxotere is working I want to be able to compare the size from dx to 1./2 through.
I will start on a/c after this last dose of T.
They say the a/c causes more gastor problems SO far I have been able to work through the first only having to call off 1 day due to alot of bone pain.
I have to keep working for the insurance, I don't have much sick time left. I had to have hemorrhoid surgery due to a rupture back in Oct right before my b/c dx.
I like Paula said will be asking for more scans and test. Being that my lump did not show on a mamo and I have very dense breast.
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Guitargirl- I've just finished my 4th AC. I have my tx on Fridays. So far have missed my treatment day and 1/2 on Monday each time. I didn't feel great, and I def. wasn't on top of my game. (Twink said it well...). I teach, so that isn't good, but I figure I still did as well as my sub would have done! For some reason, it was tougher for me after tx 2 and 3. I've had much more nausea stuff w/ # 4, but more energy. Hang in there!
Paula
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Thanks guys - I needed that. Actually I don't know how I would have gotten through all of this if it wasn't for this place.
Twink - "appealing foods?????" About the only good SE of this whole thing is that I'm finally losing weight (only about 15 lbs more needed) because nothing is appealing. The hardest thing is forcing myself to eat. No food, no energy. So I shovel down the least unappealing ...
Paula - I also go on Fridays. I usually wind up sleeping all of Monday - probably more from the Benedryl than anything else. I don't start to be me again till about Tuesday afternoon.
Now it's not just better living through chemistry, it's living through chemistry ...
csj -
well I just returned from my first 3 mo check up since finishing up my treatment (6TAC, masect, and rads) and i'm completly bummed out. My bloodwork came back ok but my mammogram on the "good" breast showed something and apparantly I have an inflamed lymph node under my arm. I'm scheduled for an ultrasound, biospy, and MRI on Apr 2. I just can't believe it. Can one person have such terrible luck...I'm trying not to worry but I just cant fathom going thru this again.....
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