Triple negative beyond 2 years- What was your treatment?

Sadie-Rose · January 2008

Hi Dunner1 and Pattypoo53,

This is just great hearing your stories! I think we have a hard time finding the success stories and we need to hear them! I think with the newer treatments we are going to hear more and more of them. Thank you both for sharing.

Warmly,

Sadie

peapot · January 2008

Thanks for the positive stories. I love reading them. Suzy, I noticed no one answered your question about tumor markers. From my experience there are 2 breast cancer markers drs can keep an eye on in your bloodwork. They aren't always a good indication that there is still cancer and some people's numbers stay high for years without showing in cancer in the way of tumors. My oncologist said that sometimes your immune system is strong enough to suppress tumor growth. It was just one more test my oncologist did after chemo and because mine was high (110) she did the battery of test again. They were all negative. Hope this helps.

Mary

jp1b · January 2008

Oh Dear! I feel an idiot, I did not know that triple neg meant a higher risk/poorer prognosis -well now I know to be extra vigalent.... Why don't the doctors tell us about this? Thankyou for having this conversation - I am new to this chat room and I am learning new stuff quickly which is really helpful..xx

RN2teach · January 2008

Thanks to all triple neg. survivors for the reassurance. I am glad to know that my chemo regimen is the one most of you described. I have 1 down, 7 to go...

jp1b · January 2008

Hello again, I have been doing some reading around triple neg BC pts and found that apparently prognosis is poorer in this group for the first 5-10 years and then after that the risk of reoccurance is no greater and perhaps a bit less than receptor positive groups. I found this stat' makes thing seem a bit brighter.

And yes, chemo does seem to be the best way forward - following a lumpectomy, I had 6 FEC followed by 7 weeks of radiation therapy (5 days a week), fingers crossed, take care fellow tri negs! Lots of warm wishes xxx

Sadie-Rose · January 2008

Hi Joanna,

My experience was that my oncologist was very concerned about the first two years after treatment and then she was cautiously optimistic through year three. When I hit that milestone she was delighted. The stats go way down after the 2-3 year window.

I will keep my fingers crossed for you.

Warmly,

Sadie

jp1b · February 2008

Thanks Sadie,

This triple neg thing upset me when I discovered about it last week but I've already got over the shock and have resolved to just be extra cautious regarding any possible symptoms - I trust my oncology team.Any further symptoms shall be 'dealt with'!! Other than that its time to live and enjoy....

warm wishes

Joanna

Sadie-Rose · February 2008

Good Morning Joanna,

I just noticed our stats are similar. I was Stage IIb and my tumor was 3.9cm, Grade 3 with one node positive. I am now three years and 7 months out from my last treatment and I am doing well. I believe you are going to have a long life and so much to enjoy.

When I first finished treatment I felt this urgency that I needed to do everything I've wanted to do right away. There was an anxiety with that. Now I am settled back into normal life and I am enjoying everything I do.

I see each day as a gift I've been given, something extra since treatment.

Hope you get to do something special this weekend.

Warmly,

Sadie

twink · February 2008

Sadie,

I want to tell you how encouraging your posts are to me. I'm spending my weekend worried about a call back from the onc to come in for more bloodwork so, it's always nice to read what you have to say. It helps me put my worries in perspective and gives me hope.

Thanks,

t

Sadie-Rose · February 2008

Hi Twink,

How are you doing???? Thank you for the lovely message. I've been thinking about you because I didn't see you post for awhile. Are things going okay?

Warmly.

Sadie

twink · February 2008

Hi Sadie,

Yes, I've been busy with work and tired at night. Other than worrying now about what could be causing the red blood cells to not be normal and, needing more tests, I'm fine. Just relaxing this weekend and making up for not posting in a few days.

Thanks for asking.

t

Lee27 · February 2008

I was looking at a site from the UK tonight. It spoke to a clinical trial they are setting up for trip negs. breakthrougcentre.org.uk/clinicaltrial .Interesting. I will ask my Onc about it when I see here again.

Raye99 · February 2008

Hello Ladies,

Thanks for the stories - all of them.

I am not two years yet, but 1.5 years out from dx, 13 months post chemo. Had L mast, followed by proph mast of R breast a year later. Tx was 8 DD AC/Taxol, followed by rads.

Sadie-Rose · February 2008

Welcome Raye99,

Glad to hear you are doing so well!!! Before you know it you will be at the 2 year mark. How have you been feeling?

Again Congratulations, Smile

Sadie

Raye99 · February 2008

Sadie,

thanks so much. I feel great, but did even when I had the tumor (which came out of nowhere BTW, did yours?). How are you feeling? You were diagnosed in 2003; soon it will be five years for you!! That is terrific. How are you doing?

Raye

Sadie-Rose · February 2008

Raye,

My tumor surfaced out of no where too. I had a mammogram six weeks before I felt a lump that had said everything was normal. When I saw the surgeon for the first time he said he could see it on the scans and the radiologist had missed it. It was shocking news because I had been careful to do a mammogram every year. My mother had breast cancer.

Today I feel great. I feel better than before my diagnosis. I hadn't thought about being 5 years out from diagnosis until you mentioned it. I always count from the finish of treatment which is 3 1/2 years out. Five years sounds great to me though!!!!

Are you still having tests and scans to do? What is your follow up?

Warmly,

Sadie

CookieOkie · February 2008

Hi All:

I must say, I was uplifted today by reading this site. I am so happy that all of you that have passed 2, 3 and more years spoke up. I truly have thought that this is the end. I am much more positive now than I was in December when diagnosed, but after reading what everyone has had to say, I know I'll be just fine.

Onc. is doing dose dense on me with the followiong:

Dense dose every 2 weeks for 4 sessions, a modified version of AC+T = abraxane (which is a nab-paclitaxe)l and epirubicin (which is a sister drug to Cytoxan), I will also be getting anti nausea with the chemo

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Day after chemo I will go in and get a shot that is a bone marrow stimulant.

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I will have a rest for one month, then get 35 days of radiation.

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Then another rest period, I think.

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Then once every three weeks (3 weeks on 1 week off) for 4 cycles I will get Taxotere and if my body can handle it he'll include a carboplatin.

Does this sound like a good treatment plan to you old-timers? Seems to me that the dose dense and the radiation is a good combination. Is this correct?

By the way, some people were asking about lumpectomy v. mastectomy. My onc. said lumpectomy plus radiation = mastectomy. I was sure I was going to ask for a mastectomy, actually got some items with a mastectomy in mind, but my onc., radiologist and surgeon all told me the same thing. Of course, I am very well endowed, that did make a difference.

Thanks again for all the positive feedback.

Cookie

Raye99 · February 2008

Sadie, the radiologist missed the lump. Wow. That is scary. I am so glad you found the lump yourself. I always count from the finish of treatment as well; but five years from diagnosis is tremendous!

I hadn't had a mammogram, as I was under the age 40 when I found my lump. I had been to the gynecologist and she did a thorough exam by palpation. I was very very small breasted and lying the table made me even flatter Wink ! She felt nothing. Four months later I feel this grape sized tumor. Amazing. When I found the lump, I went in immediately to the gynecologist - she was out, so I had another doc look at me "it's got to be a cyst". nope.

Follow up: onc every six months, chest Xray once a year. How about you? Do you have further tests? Scans?

Cookie - your tx sounds very similar to mine, except you are taking a break between the A/C and Taxol with having rads in between and my Taxol was dd. I gave myself the Neulasta shot 24 hours after tx, as I had chemo on Friday. When you are starting your treatments? How are you feeling?

Raye

jp1b · February 2008

Hello Sadie,

thankyou so much for your post, it really gave me a lift. Its so amazing how far you have come, if I do as well as you have I will be very happy indeed.. Any dietry or lifestyle tips?

I also have experienced the need to do lots of stuff that you mentioned - and I've not yet learned to take it a bit easier! Here is a list of just some of the things I've done since finishing treatments on 31st October 2007-

- learning to drive, had new fencing and decking put in garden,put in new kitchen,learning to bake and cook lots of new recipies, upped my social life, and am about to start on decorating living room, studying for 2 psychology exams in May! - in fact the list goes on.....

- I still manage to get 12hrs sleep and keep up with my toddler ...

After a full on 19yr nursing career in mental health, I have found that this time out is a wonderfully relaxing and productive experience! I just hope my GP keeps those sick notes rolling in - only joking ( I go back to work in a month or two I think), warm wishes, Joanna xx

Hello ladies,

Apart from a lumpectomy 1 week after diagnosis, my treatment regime was a different to the ones posted here - maybe its a trans atlantic thing! I had 6 rounds of good old 'FEC' ( that term 'fec' reminds me of the'Father Ted!' TV comedy in UK) with steroids, fluid and anti nausea- they told me this was standard treatment....

At the end of that I rested 4-5 weeks before commencing aggressive radiation therapy - it was given every week day for 6 or 7 weeks.

They kept telling me that they were treating me aggressively because of my age - I suspect that they actually meant because of the triple negative diagnosis as well.

Anyway its over now and I'm recovering well, chemo is chemo I suppose!

Warm wishes

Joanna xxx

CookieOkie · February 2008

Ray99:

Thanks for your info. I had my first treatment today. took about 2 hours, she put the chemo in slowly in case I'd have a reaction. All went well, this was about 2-4 this afternoon. I got a headache around 6 (I get migranes), took some tylenol because I wasn't sure where it was coming from. Then around 8 pm felt a llittle shaky and like my stomache might be getting funny. So I took a Katril (the 12 hour nausea pill) no sense in getting sick. Still have my headache so I think I'll just take my RX headache med.

I wonder why I am getting the radiation in between my chemo. Need to ask. I was amazed onc said to live my life, can go swimming, have alcohol in moderation, no special instructions. I am drinking and drinking tonight and peeing and peeing. Was told if I wake up at night and feel I have to pee, get up immediately and go, not to turn over and go to sleep.

Onc told me, with the Epirubicin, I am getting my life allotment of this type of medication. A lifetime amount is 440 mg and I'll be getting dose dense and am getting 100 mg every 2 weeks for 4 sessions. He said, and I agree, we have to be aggressive. He said he has never been this aggressive with anyone before. I hope my body will cooperate.

My blood test that check for cancer in my blood came back great, big zero, no cancer cells in my blood. If is possible to have tiny cells that don't show up in the blood test?

Worry, worry, worry, I'll find anything to worry about. But, I am very positive now. He says he is really hoping for a cure to this in me. Of course, there is always the chance of, in the future, it coming back, but not for me not trying.

Thanks

Cookie

CookieOkie · February 2008

Raye99:

Looks like we have the same dx, I think I am grade 3, t2, no, mx (there is a tiny spot on my right lower lung, too small to biopsy and surgeon and onc don't think it is cancer) but because it is there it has to be reported as mx. My tumor was 4.6 cm

Cookie

bcilia · February 2008

Been watching this site for three years, ever since my 27 year old daughter was diagnosed with stage 1, grade 111, triple negative IBC. Last Monday was the 3rd anniversary of her diagnosis and, looking over my shoulder, fingers and toes crossed, she is well. Her treatment was pretty standard, mastectomy therefore no rads, followed by FEC, six treatments every three weeks. Since then, she has followed a healthy diet, been to see Jane Plant in the UK and given up all dairy. Other than that, she has a very stressful job but tries to counter that with running and yoga when she can.

I cannot tell you how much this website has comforted me over the past three years. Not all messages are happy but nevertheless, I need to know the bad as well as the good. The reality is that we don't know what is causing this particular cancer so we do our best and hope for the best. Thank you one and all for your encouragement and humour.

Raye99 · February 2008

Joanna - congrats on all of your accomplishments since you've ended tx! My gosh, you are an ambitious woman!

Cookie - your experience with chemo sounded just like mine - my first was from about the same timeframe - 1 - 4ish. Felt fine directly after, but a little sick to my stomach that evening. The next night, it hit me - didn't vomit, but felt very fluish. Yes, worry worry - but as you mention, we do our best to beat this and then move on.

Our diagnoses are similiar! I actually had two tumors in my breast - the 5cm one and then a smaller one (1cm) - must have been crowded in that little titty Wink .

bcilia - How proud you must be of your daughter. She sounds like a very strong young lady. So young. I am so glad to hear she is doing well. Bless her.

Raye

Carly68 · February 2008

Correct me (please) if i am wrong but from I am reading (online) about tripels ,,it can be inherated or is. My moms a tripel so are there special things my Dr should be doing with me?

Negative3Grade3 · February 2008

Dear Carly,

Any kind of cancer can be inherited not just triple negative. You may want to talk to your doctor because there are some programs for screening women who may be at risk of developing cancer if that's what you want. Other people don't bother and see what happens because worrying to much over it, it can consume you.

All the best,

Christina

twink · February 2008

Less than 15% of breast cancers are triple negative. A high percentage of triple negatives carry the BRCA genetic mutation. If your family has no history of breast cancer and you don't fall into another high-risk group then you're unlikely to test positive for the identified mutations. Talk to your Mom's oncologist about the genetic risk factors.

gmr52 · February 2008

Hi Ladies,

I'm one of those who has moved on after treatment. I was diagnosed in Jan 04 after a negative mammogram in Nov 03. Ultrasound was recommended in Jan 04 since the lump I'd felt in Nov was still palpable.

Stats: Triple negative, IDC, grade 3, possibly 4-6/26 positive nodes (seen on scanning and a biopsy done prior to neoadjuvant chemo) and braca negative.

Treatment was 6 dose dense (every 2 weeks) cycles of TAC, followed by bilateral mastectomy then 6 weeks of radiation. The lump was not palpable after 3rd cycle of TAC. The path report at the mastectomy showed complete pathological response to the TAC.

Treatment since has been the recommended physician evaluations and blood work. A CT was done (results were negative) when I'd mentioned back pain, other than that there have been no scans done. I am now on the yearly evaluation schedule and, God willing, hope to remain so.

Take care.

jp1b · February 2008

hi gmr52,

good to read your story how awful that you had such a delay in getting that 'palpable' lump seen to and diagnosed properly. You've done really well, any tips?I'm always interested in what women have to say contributed to their remission of this disease,

Joanna xx

Duffymom · February 2008

Encouraging to read how many ladies are doing well. I too had yearly mammograms but found my 9 cm tumor on my own. Surgeon thinks it grew in 6-8 months. Because of it's size, in my chest wall & in 2 biopsied lymph nodes, I had 4 rounds of A/C before bilateral mastectomy. At time of surgery the tumor was completely gone and not in any of the 12 lymph nodes removed! Then had 4 Taxol & 30 rads that finished a year ago. My onc. is mostly concerned about 1st 2 years and encourages me by saying I'm a little over 1/2 way there! I took a break from this site for awhile to give myself a break from breast cancer. Now I've come back and feel that I'd like to give support to other women going through this. I think that mentally I'm in a better place right now. That's not to say that I don't worry about it coming back, as I do everyday, but try not to let it control my life. - Kathy

gmr52 · February 2008

Joanna,

It's hard to say what has been the factor behind my remission so far. I'd guess that I was fortunate in that the chemo eliminated all the cancer cells in my breast and nodes. That being said, I've been somewhat consistent with regular exercise. I was always a walker before the cancer was diagnosed. I continued that as much as I could during and after treatment. I try to walk about 30 minutes at least 4 times a week.

I don't supplement my diet, as much, nor eat the recommended daily servings of fruits and veggies as I should, but I do try to eat some fruits and veggies every day. I think that whatever you do to boost your immune system can only help.

Take care.

Triple negative beyond 2 years- What was your treatment?

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