Where are the tri-negs!

wetcoast

Hi linda,

My heart aches for you having to do this again so soon let alone having to do twice. Since my journey began I have continuted to do my running or eliptical at least 3 to 4(sometimes more)x a week and I think that is what has helped me keep a little normalacy in my life. (is that a word) I have finished ac and due to start taxol on the 10th. I am scared of that one just because I want to do the boston marathon on 21st of april.

Stay positive, laugh and dig deep you can do it. I'm told the bumps will get smaller.

hugs laurel

Squids

Hi Linda:

I agree with wetcoast.....it's so very tough to have to deal with this again without much of a break (no break if you include the recon). I'm so sorry you're going through this.

I agree also that exercise helped me a lot. I had gained a ton of weight on the 'roids during AC (I didn't do well on it for some reason) and exercise not only helped me get that under control, the endorphins from working out helped calm my nerves. Keep up the excellent work on the treadmill, it helps your mind as well as your body!

Meantime, keepin' you in my thoughts...

RN2teach

Linda- I'm so sorry that you have to go through another BC battle so soon after concluding your first one. I'll keep you in my prayers!

Laurel- being in great shape will definitely be to your advantage. I believe you'll be able to run--I'm certainly rooting for you!

It sounds like I am a few weeks ahead of you, so I'll give you my perspective. I started DD AC on 1/18, had my last dose the end of February. It made me feel "blah" but I think I did okay. I worked every day except the 1/2 day I had to take off to get my chemo. Started Taxol 3/14 and had my second dose 3/28. No fatigue or stomach discomfort w/ Taxol, but the big thing for me is bone and muscle pain. I've had to take a narcotic to sleep on the worst nights (day 3-4) but after those days pass I'm okay w/ plain tylenol. I am still working every day and feeling great now that the painful days are past. Oh, and I take 20mg Decadron at midnight and 6am the day of treatment... that's all.

Paula

Wink333

Hi,

I'm not new to this but wondering if someone can again give me the meanings of the terms IDC, DCIS, and IBC. Chemo brain or something but can't remember or find definitions of each.  IS is for in situ I think, not spread, is this correct?

Linda, I am so sorry you are having to go through this again! Have you had any genetic testing done?  I'm contemplating getting tested as worry about spread to other side too. It stinks that you have to endure this again.  Prayers and hugs to you. 

Wink

RN2teach

Wink:

IDC= Invasive Ductal Carcinoma

DCIS= Ductal Carcinoma in Situ

IBC= Inflammatory Breast Cancer

ILC= Invasive Lobular Carcinoma

LCIS= Lobular Carcinoma in Situ

You can find more information about the different types on this site. Look under the Symptoms and Diagnosis section of breastcancer.org

Hope this helps!

smithlme

Thanks all for the kind words. It's been a roller coaster week!

Wink,

My paternal Grandmother died of BC and my sister was diagnosed at 36. She's an 18 year survivor and my biggest cheerleader! Our dad is an 11 year Colon Cancer survivor and a 5 year Kidney Cancer survivor. He's 82. Our other sister is participating in a sister study. As soon as my life calms down, I'm going to have testing done for my kids' sakes.

Linda

RN2teach

Hey Tri-Negs,

I just had my 3rd Taxol yesterday (only one more to go and I'm through w/ chemo). Saw my onco Thursday and was asking about his plans for follow-ups after I finish treatment. He is not planning to monitor me as I would have hoped. I will be seeing him again before I start rads and I will be broaching this subject again. I'm thinking that I would at least want bloodwork for tumor markers and a digital mammo every 6 months (in addition to my monthly BSE).

I know we've discussed this a little here recently, but I'd appreciate your input about follow-up.

Thanks so much, Paula

Laura-Vic

Paula - after I finish my rads (I had bilateral and chemo as well), I too will fall into the black hole.



I spoke to my oncologist about follow-up and unless I have symptoms or unusual pain (lasting longer than 10 days) there will be no tests, no scans, no MRIs and such. As she put it ... far too often bc patients live their lives by the calendar - by the next test, by the next "okay". They stress out around the date, they stress out for the test and they stress out waiting for the results. Their information is that only about five percent of the time would they find something unusual and then - it could be the tylenol, the time of the month, a virus or something that causes worry for no good reason. The very few true issues ... with the regular scanning may have been caught 4 months before they presented symptoms. Her view was the those 4 months earlier would have no measurable impact on the efficiency of the treatment to address the new findings.



So - her advice to me was live your life. Get on with it ... do not live by a calendar or a test. Live by your body .... as far as she's concerned, once I finish radiation - I can consider myself NED.



So, I am not going to worry about the dates, the "next" test or the "next" shoe to drop ... I'm going to get on with things and take the lessons from this journey and move on.



Just wanted to share my experience.



Laura in Victoria

Sadie-Rose

Hi Paula,

I thought I would add a different perspective.  My oncologist believes we should watch things closely.  I discussed with her the controversy, about whether to do follow tests or if it is better to just wait until something shows up. 

She was adamant about doing screenings.  She believes if I should have a recurrence, the earlier we discover it, the more choices she has for treatment.  She feels this is very important.

In my experience, I found the tests and rechecks to be very reassuring.  It always gave me time without any worry.  It always lifted my spirits and we celebrated each clear test.   

Warmly,

Sadie

NarberthMom

My onc falls somewhere in between with respect to follow-ups. I finished chemo in May 07 and rads in Aug 07. I will see my onc every three months for three years, then every four months for two more years, then every six months for five more years. He and his nurse do thorough clinical breast exams (CBE). They also do blood work, not checking for tumor markers, but looking at panels that might suggest problems with white blood counts or liver enzymes. Every six months, I get an MRI or mammo, alternating each one. Once a year, I get a chest X-ray. I only get additional screens with symptoms. (I should point out that even though I had no node involvement, I had one bad margin, too close to the chest wall to do much about short of digging out muscle. My onc is worried about vascular invasion in my case).

RN2teach

thanks for the input, ladies.

Laura- I suppose I "get" what your onco is saying about stressing over dates and results. I'm just shocked that our oncologists don't recommend more in the way of follow-ups. It seems a little irresponsible given the type of cancer we have and the lack of any targeted therapy. Follow-up is the only "weapon" we have.

My dh has MRIs of the brain every 3 months and will continue to do so as his cancer is very aggressive and likely to recur. After 2 years, they're just part of his routine care. We don't stress over them, but they DO give us much needed peace of mind (he has seizures and w/o those clear MRIs I know we'd be thinking that the tumor was growing again)

Sadie- Isn't it interesting the different perspectives on follow-up? I like your oncologist's approach. Wish there was a standard for follow-up care like there is for chemo and rads...

NarberthMom- your follow-up plan sounds very reasonable. I'd be happy with that!

thanks again, Paula 

carolynf

Paula, I would have to agree with you in follow ups.  I have 2 more taxols to go!  I found out last week that I was in Arm c of the Avastin trial which means i can continue avastin for 10 more cycles (November).  I decided to keep going since it does not have the same se's as the taxols or not as severe.  Since I am in the trial they will be monitoring me due to this.  My onc says that I will have the 3mon ck ups to start with and this was based on just standard treatment.  I will be seeing him every 3 weeks due to the trial. I am having an ecko/ekg next week because of the trial.  So I guess this will be my standard checkup for my heart (its the 2nd one in 2-3 months).  I haven't stressed over anything yet in regards to how follow ups will be.  I still have rads that I will start in June.  I hope to finish all these treatments and try to live as normal a life as I had before.  I will be doing BSE's weekly though.  Haven't been exercising like before due to fatigue.  That's where I need to focus at this point.

Carolyn

wetcoast

At what point would you bring up follow up. I just did my 2nd taxol on friday and have two more. My red count is down and they are watching that and after the last neulasta shot my white was fine. My first taxol was pretty roungh as I had the neulasta the next day so I guess this time will be the true test. I was also allowed to cut my dex in half as I didn't sleep at all the last time. Sorry another question, I don't have a port and they only use my right arm. They have used the same vein three times and it is a huge sucker but this time it feels like they have left something in there. It feels bruised inside and I can roll it back and forth. Is it because they have used it so much that it is now scar tissue or is it possible something was left behind?

thanks laurel

Analemma

laurel, I see that you asked this several days ago, and I didn't check here.  You might have phlebitis, which is a sort of inflammation inside the vein from the chemo.  It causes the vein to be hard and sore, and in my case my whole wrist got red and itchy before it got better.  Google phlebitis and chemotherapy and you'll get more information.  I was sure I had some kind of infection!

wetcoast

brenda, thanks for the info. The vein is definitely still sore and hard and I can roll it. (about 1 and 1/2 inches) Shall make sure onc knows and another vein is chosen.

HollyHopes

Hi Ladies - re: follow-up.  I see my onc every 12 weeks and in between that see my surgeon for follow-up.  Onc does tumor markers.  Said that was optional.  I don't usually worry much, but this weekend am having a very low grade yucky - ill feeling, queasy, dizzy...almost like the days after chemo...I get panicky whenever I get sick. Goofy, I know because - I felt great when I was diagnosed...now I worry that I am getting sick and then my mood plummets and I worry about managing my life and will I die alone...blah, blah, blah....

FloridaLady

HollyHopes,

Big ((hugs)) I hope you are feeling better.  I know what you mean about on going concerns...cancer is our shadow. 

Flalady

RN2teach

Holly- hope you're feeling better by now. I've not finished treatment yet (just started rads), but I agree with Flalady (aptly put, BTW--"cancer is our shadow")

I saw my surgeon (who is a surgical oncologist) on Tuesday. He wants a baseline PET Scan and a brain MRI in September. Thereafter I believe he intends to scan only as symptoms warrant.

I saw my medical oncologist yesterday and he plans clinical exams and tumor markers every 4 months and an annual mammogram (after a baseline mammo in Sept.).

So... looks like I have all my bases covered as far as follow-up. What do you gals think? Good plan? Too much?

Paula

Oneita

Hi Ladies,

It has been a very long time since I visited this site.  I am a triple neg.  I found my lump Aug.17,2004. Had a lump and neg nodes.I was stage 2a. Did 8 chemo and 33 rads.  I am happy to say to this day I am cancer freee. I go for my check ups once a year now. As the time goes on I worry less.  Just when I go for my mammogram I worry till I get the results. But each year gets better for me.

FloridaLady

RN2teach,



I think it is a great plan. Other than the MRI of the brain. Usually a CT Scan is enough. Triple neg does not go to the brain usually until final stages.

From what I have learned it likes liver and lung best. Yuk!





Flalady

peapot

Just another triple neg checking in.  Diagnosed in may 2007. lumpectomy, 4 a/c 4 taxol treatments.  Couldn't bear a repeat so had bilateral mast in January with reconstruction.  Getting my hair and my energy back and basically playing the chemo card for things I don't want to do.  My onc. told me Tues she believes I'm cancer free after months of my tumor markers being elevated and liver enzymes being wacky, all bloodwork is good now.  started to exercise (didn't think I should waste the time if i was dying, LOL) and feeling better everyday.  Had my implant exchange April 3rd and that made a world of difference  Looking forward to a great summer and a long life.

mary

RN2teach

Hi Mary,

Thanks for sharing your good news. LOL at playing the chemo card and your exercise strategy! I'm glad you're feeling well both physically and mentally.

Paula

Sadie-Rose

Hi Mary,

It must have felt wonderful to have your doctor so pleased with your progress.  I have a friend who is a naturapath and she told me after I finished treatment that the goal now is to reach optimum health.  Exercising is a great start.  Wish you well.

Warmly,

Sadie

wetcoast

Just checking in,

Chemo is finally done and rads to start in June. Just a little bit farther.

Any suggestions on questions to ask for follow up for a triple neg girl?

Hope all is well with everyone laurel

smithlme

Just checking in with all that's been going on. My bone scans came back clear, so I now have a base line for the future. I had my second opinion with another Onc and we went over everything I have done. She's in total agreement with my Onc. She also ordered blood work and I am anemic. Could be from the 4 surgeries these past 14 months. Ya think?! I am now taking iron twice a day for a week then 3 times a day after that. And lastly, I received a call from my genetic counselor on Thursday and I tested positive for BRCA 2. I finally have some answers as to where all this crap is coming from. At her recommendation, I am having a full hysterectomy in June, as I am now considered high risk for Ovarian Cancer, as well as Melanoma and Pancreatic Cancer. More info than I wanted to hear, but I have to know for myself, siblings, kids and grandkids.

 I will see my geneticist again on June 2 to go over all my testing and also my OB/GYN for my pre-op. I'll tell my kids about my results and surgery right before I go into the hospital. It's been a rough 14 months and we all could use a breather. I'm just feeling overwhelmed, tired and frazzled...

Linda

harbin

Hi Wendy,

I am new here and have read your post. You mentioned that you are on the trial with combined chemo with avastin. I assume this is the trial (E1503). I have similar diagnose as you (size 2.4 cm, grade 3, tnbc, dx on 4/18/08, had lumpectomy on 5/6, re-excision on 5/21). I will start my chemo in 1-2 weeks. I am seriously considering this trial. I wonder what SEs you have experinced from avastin so far (assuming you were assigned to avastin group).  When will you be unblinded?  Thanks, Harbin

harbin

Hi Wendy,

I am new here and have read your post. You mentioned that you are on the trial with combined chemo with avastin. I assume this is the trial (E1503). I have similar diagnose as you (size 2.4 cm, grade 3, tnbc, dx on 4/18/08, had lumpectomy on 5/6, re-excision on 5/21). I will start my chemo in 1-2 weeks. I am seriously considering this trial. I wonder what SEs you have experinced from avastin so far (assuming you were assigned to avastin group).  When will you be unblinded?  Thanks, Harbin

FloridaLady

Bump...Bump...

Harbin,  I back on Avastin for the second time.  The only SE I had as rash on my skin (not IBC area's), do to my cancer is in my skin...I had pain on my chestwall.  You need to flush your kidney's because Avastin is hard on the kidneys also the heart.  I know some have had nose bleeds.

Flalady

Tam2003

Hi!  Another tri neg checking in from Pittsburgh.  Still alive and kickin after initial diagnosis in 2003.  Living with recurrence to bone diagnosed in 2007.  Currently on Xeloda and praying every day.  I am still working at my office and playing with my 4 year old and 10 year old.

Indigoblue

Hi,

Popping in to say Hi!  It's wonderful to see familiar friend's names and replies. My, there are many new names, however.  It's great you've found somewhere to find answers and sypport.  This was the only site I found explaining the mysteries of Triple Negative to me.  It was another one of those "unexpected details" the physicians skimmed over briefly when discussing options  I requested a bilateral, and was denied the choice; the surgeon said, too radical.  . 

I received the standard treatment for IDC, High Risk, Trip neg, Grade 3, Sentinal Nodes clean (4) and later developed a Seroma in the armpit.  The tumor, lesion, was 1.7 cm.diameter x 2.5 Undifferentiated, procedure was a Partial Mastectomy, filled in with a large Hematoma; regret not having a Bilaterial.  First Mammotome Biopsy, and Ultrasound report said it was 1.1 cm, and didn't look so splattered.  Two weeks later, MRI, showed a nasty, stellate, fast growing lesion; Surgery the same week, on 12/15/05, followed by 4 x A/C, 12 Taxol Weekly tx, and 23 Rads. 

Still wondering why they bother taking any Lymph Nodes when the Chemotherapy and Radiation tx is pretty Standard for Trip Negs, no matter what Stage, Grade or Size, or even genetic factors...when they give you everything possible, you're done, until a Mets. shows up.  So why not recommend a Bilateral, no lymph nodes removed, and give the same tx.   

The biopsy indicated lymphatic invasion present in the blood, and now I question why remove any  lymph nodes?  I would have preferred to have the use of my mind, hands, arms body, and quality of life.  Hasn't been good with the side effects.  And I'm tired.

The ring-around-the-doctor for "what's up, doc?", has driven me over the edge on many an occasion.  I am as uncertain now, as I was the day I found the lump, after it was not found on 3 mammogram visits 4 months prior.  Dense breast tissue, family history...a nagging pain.  I knew it was there.  Wanted a bilateral ten years earlier; a protruding blue ven, a constant stabbing pain, and significant family history, a decisive reasoning factors, and my mother had Inflammatory Cancer.  Not good enough. no MRI . no diagnosis.  Spilled milk, boo hoo.  

I'm still here, August 30, will mark the date of the last chemotherapy treatment, making it 2 years NED (according to my Onc., that's when you start counting, not after surgery, and before Radiation Tx.). 

Good luck in your treatments, many new and positive outlooks are in the works. Hope and prayers to all, and I look forward to understanding exactly what this "oddball cance"r, Trip Neg, is about, scientifically speaking, ofcourse. 

Love,

Indi