Triple Negative...a bit scared.

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Re: Triple Negative...a bit scared.

Postby confusious » Tue Nov 23, 2010 6:12 pm

:hugs: It is normal to be a bit scaredof all you have to go thru. I was diagnosed 5 May 2009 with exactly the same as you, only my tumour was a bit smaller. Lumpectomy, clear margins, 4 lymph nodes all clear. They find the best way to treat triple negs is aggressively with chemo, and radiation. there are some not so good info out there on them but if all is clear before you start there is a lot ofpositives to the results. Chemo affects everyonedifferently I was not well for about 5 days and then came good. The radiation was fine no side effects ( made me a bit tired) Drink heaps of waterand suck on little cubes of ice. You will be fine. :happydance:

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Re: Triple Negative...a bit scared.

Postby Doxiamonev » Mon Nov 08, 2010 3:35 am

Hello Jen,

I'm triple neg too & I know when I was first dx I searched the
net & found lots of negative stuff but with all that I've learnt these
last few years is chemo responds very well to triple neg!

This is a very scary time & there are lots going through your head,
take one step at a time....you'll be fine & remember we are all
here for you with any queries xxx
Hugs

Doxia
Some people are always grumbling because roses have thorns; I am thankful that thorns have roses." Alphonse Karr

Dx 27.12.07,Gr 3, IDC Lt breast 1cm (Prim Ca) & 2.5cm (L/Node)
Bilateral Mastectomy & tissue expanders inserted, Axc. clearance 1/17+, Triple Neg.Tx 4 AC chemo,12 wkly Taxol (28/7/08)2 yrs NED!

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Re: Triple Negative...a bit scared.

Postby Janette » Fri Nov 05, 2010 10:21 pm

Jenny,
This is a very scary time at this stage of treatment. Things will settle down and hopefully you will become a little more complacent as time and treatment passes. Getting pathology results and starting chemo is a huge hurdle but you will get through it. :hugs:

Sandra-anne,
Good to see you post. I'm very sorry to hear about your brother, you certainly have been through a lot.

Congratulations on the 12 months anniversary, I dearly hope you are doing well. I hope you do share your story. :hugs:
Janette


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Re: Triple Negative...a bit scared.

Postby hibiscusmum » Fri Nov 05, 2010 10:09 pm

Hi Jennypop,

I'm triple neg, with 1 lymph node involved too & it scared me a bit. Nav has posted some gr8 info which should help you. But yes there are positives: No hormone treatment, it responds will to chemo etc etc.
Chemo is daunting at first, but hey I've just had my LAST FEC, last Thursday & I did it, I made it! :v_happy: :v_happy:

I had a PICC line from the 2nd chemo as my veins shut down. Haven't got to the radiation yet as I'm waiting on BRCA results to come back before I do any more.

Hope this helps, all the girls have some great advice.

Tanya

PS Best of luck you WILL be OK :hugs:

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Re: Triple Negative...a bit scared.

Postby sandra_anne » Fri Nov 05, 2010 9:57 pm

Hi there, I haven,t posted for soooo, long, but have been listening to all your girls for nearly 12 months. I was Dx11/11/09, rememberance day. That will be 12 months next week!. Triple neg 3cm lumpectomy, clear margins and no nodes. Talk about scared! BUT I did it. FEC/D then 30 rads. Yes I did it!!!! 2 weeks before I finished rads my brother had a worse diagnosis, so as soon as I was done I was on that plane. I spent 2 weeks with him in NZ, and the family(I was as bald as a badger) but put the wig on and a brave face. Sadly he passed away 2 weeks after I got back.
Went for my check up when I got back and hey, my tumour markers were still high. What the hell? anyway that is another story. I would just like to say my BC is all good, many tests and probably many more to come, but that is OK! your team will look after you. I don,t want to send any negative stuff, so I will talk about the other story at a later date. Apparantly I am a very rare case. Keep your head up high cause if I can do , anyone can! Good luck

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Re: Triple Negative...a bit scared.

Postby Urthgirl » Fri Nov 05, 2010 4:25 pm

Hi again,
Originally I was scheduled to have 6 sessions but after the 4th one they changed their minds and said 4 would be enough. I had no sentinal nodes involved. I think it just varies from oncologist to oncologist how many sessions they recommend.
I got caught up in the bad rep that triple negative involves aswell especially the regarding the risk of mets ect but then decided like Nav that there was some positives to being negative. Chemo usually is very effective for us also our type of bc responds the best to lifestyle changes such as diet and excercise. This made me feel empowered in some ways because even though I can do nothing about my genetics I am now aware of the positive changes I can make myself in other ways.
I still struggle some days with the whole triple negative bc thing as it would be nice to have some specialised treatment for us, I think they are currently trialling new drugs to help us though so fingers crossed it isnt long before we see something soon

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Re: Triple Negative...a bit scared.

Postby LuvMyLab » Fri Nov 05, 2010 3:34 pm

Hi Jenny,

I found that no pain meds gave me any relief, mind you I was only on panadol and nurofen. I just told myself it wouldn't last and sure enough after a couple of days it eased off and another day it's gone. I'm sure you could take something stronger, but remember not everyone gets the pain. Maybe just keep some pain meds on hand.

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Re: Triple Negative...a bit scared.

Postby jenny-pop » Fri Nov 05, 2010 2:43 pm

Thanks Nav for bumping the other thread, it was helpful but made it very scary at the same time. I replied witha couple questions if you have the time.

Urthgirl: when did you finish treatment? How long has the pain lasted? I start first chemo on 16th Nov and they want to do 6 sessions, I wonder why you only got 4. Did you have lymph node involvement? I had one postive node.

Judy thanks for the info on the port and bone pain, I hope I am as lucky as you and escape that one.

JetJ and gail, thanks for the support :)

Luvmylab: Just a quick question, what do you take for the bone pain? Is it managable? I just want to be prepared with relevant pain meds before I leave the chemo suite so I dont have to suffer any extra cr*p as I am sure I will have enough to go through.

Thanks everyone, I am still scared but I am hopefully I get over it. I am just scared of mets because apparently they are more common with TN. Yikes, freaky stuff. Not looking forward ot the 16th but I am looking forward to this hopefully being over!!!
Triple Neg Diag: Sept'10. 28mm Grade 3 invasive DC. SNB, and Lumpectomy Sept 27th. Clear margins and node negative. Full clearance 1 positive node. Local recurrance Feb 2011, LB Mast. Chemo from Dec 2 2010 - June 10, 2011. 30x rads in July/Aug. Recon and prophylatic mast Oct 17 2011 and pregnant..

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Re: Triple Negative...a bit scared.

Postby yowyow » Thu Nov 04, 2010 8:23 am

Hi Jenny... googling triple negative will send you in a spin, there is a lot of scary stuff written

here is my take on it now..(copied from another triple neg thread)

It scared the sh%#t outa me for a while. I searched and searched for positive stuff..... not
much out there............

here is my positive thinking now.........(this is not a this v's that post - just some positives for triple negs - and just my opinion)

Triple neg is mostly aggressive grade 3 - its positive that we get hit hard with treatment from
the get go. It is just about standard now, that even with negative nodes, triple negs will do chemo and its proven that chemo works better on er- pr- (there is a report I posted in primary under "triple negs" thread - will bump it)

It would be great to have other first line treatments but.......... positive - we dont have to do hormone treatment for 5 years, we dont have to spend a year going back for herceptin infusions every 3 weeks.

Its positive that research is beginning to show that we can nearly be called "cured" after 8 years, that does not mean we cannot get a new primary, especially if your BRCA1 or 2+ ... but cured from initial dx. With er/pr+ studies show it can recur after 20 years.

OK, my thinking.......... as long as we dont get mets (thats a whole different kettle of fish)
its the best cancer to get!
Nav
every day without laughter is a wasted day !!!!


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Re: Triple Negative...a bit scared.

Postby Urthgirl » Wed Nov 03, 2010 7:35 pm

Hi Jenny, I am triple negative and I did pretty much the same treatment you are about to do, Taxotere etc. I had 4 chemo treatments and 35 rad sessions. I found that the chemo wasnt too bad but did have an accumulative effect i.e the first I breezed through then they all started to get a bit more intense after that. I found that I felt fairly cr*p the first week after treatment and then the following 2 weeks after I started feeling relatively back to normal just in time for the next one.
I lost my hair about the 2nd week after my first chemo so pretty quickly!
I still have unfortunately lingering SE from the Taxotere such as some joint pain and muscle neuropathy but I think that is too be expected so my docs keep telling me.
I think Ive posted to you before about the fact that I am pregnant well actually fell pregnant 6 months after my last chemo!! Pretty crazy considering the fact they assuredme that I may find it hard to fall pregnant again without haing the zoladex injection (which I opted not to have) so yeah anything is possible and the doctors are not always right. You will be fine, its amazing the selection of drugs on offer to make your treatment as painless as possible.

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Re: Triple Negative...a bit scared.

Postby Janette » Wed Nov 03, 2010 6:35 pm

Jenny,
All questions to write down to clarify during your appointment. If you are hormone negative, one would think that pregnancy will not drive hormone positive cells, so could be a positive thing from that point of view. No hormone therapy for 5 years either.

Chemo is supposed to work very well for triple negs and as mentioned Nav has posted lots about it. Hang in there lots of our members are triple negs. :hugs:
Janette




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Re: Triple Negative...a bit scared.

Postby JudyB » Wed Nov 03, 2010 4:51 pm

Hi Jenny, as others have said it's good you now have a plan. Nav has some really good info on triple neg and I'm sure she will reply to you when she sees your post. Don't be scared of the chemo, it is very doable and as LML said, triple negs are supposed to respond to it very well. The neulasta can cause bad bone and joint pain but that's not a given, I had absolutely no bad side effects from it at all and hopefully you will be as lucky. As you are having a port put in I think you will be surprised at how the actual chemo infusion is. Once the canulla was in with me I just sat back and relaxed. It was painless and I was able to walk out of there feeling fine. Taxotere is definitely the one that can affect your nails so ask for the ice gloves if you can. I found them uncomfortable because they were so cold but I put up with it and my nails have been fine.

Remember drink lots and lots of water in the first couple of days after the chemo.. You can do this and when you feel crappy just remember that this is the treatment that will zap that damn cancer.

Good luck, it's full steam ahead now and before you know it you will be past this hurdle.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Triple Negative...a bit scared.

Postby Gail » Wed Nov 03, 2010 4:37 pm

Jen, can understand your worry, it is all so daunting until you begin treatment. I hope it treats you kindly, you will love your port. Don't know about triple negs, but heaps of info will no doubt be coming your way. Good Luck. :hugs:
"You Gotta Laugh!"

Gail


Diagnosed April 2006,Lumpectomy,17 of 25 nodes positive, chemo, radiation. Finished treatment March 07
Diagnosed July 2012 cancer of mediastinal(nodes around lungs and heart)pelvis and spine. Up for the fight!

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Re: Triple Negative...a bit scared.

Postby LuvMyLab » Wed Nov 03, 2010 4:23 pm

Hi Jen. It's good you now have a plan!

Don't be frightened about triple neg. I am not the expert (there's many girls on here that are and I'm sure will respond) but I do hear that triple neg responds very well to chemo.

I'm on a different chemo - Carboplatin, Taxotere, with Herceptin. I think it's the Taxotere which can affect your nails so I were cool mits on my hands during the infusion. All I can tell you is that whilst it's going in, you don't really feel anything.

As for the neulasta, my Onc ordered that for me after my 1st chemo when my WBC dropped very low. So now I get that injection 24 hours after chemo. It gives me bone pain in the hips and legs for a few days which is pretty horrible but it passes.

You are on the road to recovery Jen, charge on and it will be over before you know it.

Oh, during chemo I'm also having Zoladex injections in the hope my ovaries will still function. So with that I get the hot flashes.

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Triple Negative...a bit scared.

Postby jenny-pop » Wed Nov 03, 2010 4:14 pm

Sorry to start yet another topic but I just found out today that I am triple negative. So I am a bit scared because I have heard its a worse prognosis and I dont know much about it.

They originally told me I was ER+ and P+ and HER2-. The final conclusion after more intensive testing came back as hormone negative.

So I start chemo Nov 16th (I AM TERRIFIED...ok understatment, I am more than terrified) and they will have me on taxotere, doxorubicin, andendoxan and neulasta. That is alot of drugs IMO. So I have no idea what those drugs are, how they affect you or anything. I have chemo info session with the nurses tomorrow. I also have a referral to get the pump ir whatever it is surgically inserted to make chemo easier since I have horrible veins. My veins are destroyed since all the work I have had done all on my right arm so they think it will be better with a pump and hopefully not as painful as canular after it is inserted.

Anyone who can shed some light on triple neg I would be so grateful. Also what about pregnancy post chemo and radiation, since I am triple negative and dont need hormone therapy theoretically as soon as I am 'better' I can have a baby right?

Thanks in advance for any info!

Jen
Triple Neg Diag: Sept'10. 28mm Grade 3 invasive DC. SNB, and Lumpectomy Sept 27th. Clear margins and node negative. Full clearance 1 positive node. Local recurrance Feb 2011, LB Mast. Chemo from Dec 2 2010 - June 10, 2011. 30x rads in July/Aug. Recon and prophylatic mast Oct 17 2011 and pregnant..


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