TRIPLE POSITIVE GROUP
Comments
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Footballnut I did the same treatment as you - it is doable, it's no walk in the park, but you will get through it. Your fears are the same face by all of us at some stage, and very understandable. I'm three years out from chemo now, and still upright and above ground lol.
Focus on the treatment killing off any stray cancer cells, and yes - you will feel unwell during the treatment at some stage, but you will get better too. Take one day at a time and one foot in front of the other, and you'll get there.
There's lots of great information on these boards, and the women here are wonderful and have all been through what you are now going through and will support you all the way.
Trish0 -
footballnut - sounds like we have very similar pathology and the same treatment. For me, the Herceptin was added with the Taxotere so the regimen was called FEC-DH. As Trisha-Anne said, it wasn't a walk in the park but here we are to tell about it. I will be two years from surgery date June 29th, finished my chemo early December 2012 and Herceptin completed October 2013.
It is such a whirlwind at the beginning but it will all settle down and we are all here to help you with any questions or concerns that you have. Re: fear/being petrified - these are fears we all have. It seems that with breast cancer chemo, rather than becoming skin and bones there can be a bit of a weight gain during treatment. With some effort that weight does come off. Reading about all the side effects can be very scary - but they watch us very closely, including the heart.
Reading too much can exacerbate the fear - sometimes it is better to discuss the concerns with your MO or maybe a nurse navigator if they have one.
One thing I realized early on was that all I had to do was take one day at a time - that is the first thing that you can do - sending hugs your way
Goutlaw - be good to yourself - the pain will get better every day, I had an abdominal hysterectomy in 2008 - seems that I grow things. Re: AI - you should ask your MO about how they plan to protect your bones - most do a bone density prior to starting the AI so they have a baseline.
Sorry, can't remember who asked re: other genetic testing if BRCA negative - names of two they are testing for in my case are Cowden's Syndrome and Lynch Syndrome due to personal and family history - the test Linda505 mentioned covers these
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Footballnut I'm sorry to welcome u here, but this is a great place for info and comfort. Once things start it all goes in line and follows step by step and u'll fear won't be like it is at all. Drs. will always be there for u and the nurses and u can tell them always how u feel and they help u so much. I'm very slow with everything and it took me about 1 and 1/2 yrs to tell the dr. or nurses how I felt. I really thought it was a polite How are you and I'd always say fine. That was it. Then my sister told me NO when the dr. or nurse asks u how u feel they really mean it so then I was telling them. So tell them right away anything u want and let them deal with it for u. So don't fall for the polite how are u like I did.
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Welcome FBN! What they said! All I can add is drink your water. Citrus makes it taste a bit better but you need fluids. Much love.
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Hey Footballnut - welcome to the thread - sorry you are following me around LOL but welcome (march surgery sista). You will find a wealth of knowledge from these fine women in this group and they are great about answering your questions. Have a great getaway with your hubby and enjoy the hockey games!
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good morning everyone! Nice to meet you and bump into those that I've already come to know!!
:-)
It does help to share and chat!!
Did anyone drink Gatorade throughout treatment? My gf said that this helped her a lot as well
My hubby and I are going to a chemo class at the hospital tomorrow but I've done so much reading already as my gf who had bc gave me her materials which she received from the same hospital
Peanut butter. Apple sauce. Hot cereal. Cooked veggies. Water. Water. Water!! Lol
My gf told me that on her good days she ate everything in site!! I look forward to those!!!!
Lol
I just want to be able to move around and still do stuff. I recall that when my gf was going through treatment she came out to see my band play a few times
It's things like this in addition to your sharing that I hang in too
You are all my inspirations!
:-)
Ang
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Footballnut Hi there! Sounds like you are getting one of the typical treatment plans for triple positives. I assume "FEC-DH" has a typo and it's "FEC-TH" H being Herceptin and T being taxol or taxotere. FEC is used in Canada and Europe. Not used as often in the US. Not sure why. Probably has to do with insurance/drug company relationship. But don't worry you are getting the right stuff.
Neulasta shot. Most of us got that too. Some people had no issue. Some of us had some bone pain with the first shot like me. If you take it with Claritin it will reduce some of those aches. Ask your onc if that's OK. I couldn't take it because I was already on Zyrtec. It's very doable though and for me only lasted a couple of days. It was worth it though. Less concern about infection.
I too was very healthy going in. On no meds, never had any issues other than well managed IBS. The thing that I've noticed is going in healthy really helps. They will be monitoring your heart to be sure there are no issues. Most of the time with Herceptin if there is an issue, they will stop till your heart repairs or stop all together... and most of the time it does reverse and go back to normal.
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Thanks everyone for your comments. It is much appreciated.
When I was first diagnosed with BC in November, they were going to do surgery first. We had just started planning and then my her2 came back positive and the BS called and told me "this changes everything. It's now a whole body disease, you need to do chemo first." The three tumors in the left-she can no longer even see anymore on the scans, due to the chemo. I would think they then would not have to get so drastic if the tumors are gone, but it appears it is still the only way they are currently doing things is to still have surgery, and even drastic surgery at that with the masectomies. It would be nice if they could just do chemo, then rads and oral drugs without the major surgeries-maybe one day in the future, but doesnt help us now.
I had already seen the PS once at the beginning, but have a new appointment now that things have changed. I am anxious to talk to him and see what he can offer me on the lumpectomy breast. I am not sure how symmetrical he can make me with a masectomy on one and a lumpectomy on the other.
So, questions involving masectomies-is there really zero feeling in your boobs? How bad is your scarring-I hear they go right through the center so scarring is pretty bad? I know I have to do what is best for the cancer. I definitely dont want to go thru this crap ever again if I can help it-so I do want to do the right thing the first time...just trying to absorb it all and mentally get ready. When you have been big breasted your whole life, amputation on the girls is scaring the crap out of me. The healing, the depression from losing them, the expense, the long process, trying to work...dragging this out even longer...so much extra to go thru w masectomies.
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Vettegirl I think making the decision is a hard call, but after talking with everyone u'll know what the best one is for u. And for some women it is emotional having a mastectomy so the decision is harder to me; But as far as scarring just one portion looks kind of silly but the rest is just a straight line--having recon would be a longer time the way it sounds, but I didn't and there was really no pain after at all, just movement with u'r arms had to be worked out. I actually think a lumpectomy is more pain but that's just me. My decision was pretty much made for me so I didn't give it another thought I didn't care but again that's just me. But I would think if u had to make this one it would give me pause. But whatever u decide feel like u did the best thing for u'rself in the whole picture of things. And I wish u the best. And these women are great here they can help in so many ways--not me tho I don't know anything medically.
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scars fade. If they don't they can use a laser to fade them. I do have numb spots in the middle of my boobs but all around the middle I do have some sensation. It's different for everyone. I have some numbness under my arms from lymph node removal but I'm so small and really thin back then that they were bound to damage a few nerves in the underarm. Doesn't bother me though. I too was worried about scars at the beginning too but they really do fade. I'm not saying you will look like you did before but it's not as bad as I thought. I had looked online and saw many photos of women that didn't look good. When you meet with the plastic surgeon be sure to see examples... and lots of examples of his/her work. It will give you a good idea of what you can expect.
Many women end up with better looking boobs then before. New ones don't sag and if you only do one they will give the other a lift. In my case my old boobs were awesome (although small) because I never had kids and very dense tissue. They didn't sag. But I'm still fine with the new ones. At least they are bigger and match my hip size a bit better. You can go smaller if you like too.
port scar has faded nicely too. I did nipple reconstruction as well. You don't even see those scars!
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Vettegirl here is my opinion on mx
I was born with 1 boob. The right never developed so was always flat with a nipple. I have no muscle on the right side. Therefore I had an implant on the right side since my mid 20s
When I was diagnosed I was given the option if having a lumpectomy but chose to have a mx which turned out to be a modified radical mx because the lymph nodes had to go. I also had the implant yanked out
My surgery was on Monday March 17. St paddys day. I was in at 10am and hone by 4:30 that afternoon. Perhaps it's because of how I was born but I don't miss my boob at all.
As far as healing everybody is different. I was full of morphine when I came home from the hospital however never had to take anything once home. Not even Tylenol
My drains were out within 5 days: staples removed in 7 days
I did have a lot if burning and tingling as a result if the lymph nodes begin removed (21). Having said that here I am 3+ weeks since surgery and the pain is much better. Even the burning sensation has reduced. I still have a pulling sensation in my the back of my upper arm to my elbow but it's bearable. I started my exercises the day after surgery and do them daily
Two weeks after surgery I saw my surgeon. He removed approx 2oz of fluid. I didn't feel a thing. He is awesome and I was numb!! Lol
Today my scar is a lot lighter but having played sports I have scars and marks all over my body so it doesn't bother me. It just is another mark that keeps me unique!
There is still numbness and tightness in the area but nothing bothersome to me
I will go flat. No more surgeries for me! I actually just bought new boobs at la vie en rose which I can wear now because the bra and forms are very light. I think that I look better than ever!! I'll never sag again and can be any size I want whenever I want!!! Lol
I do still have a bit if fluid build up but not too much. My MO is not concerned at all
Hope that this helps!
if I can help further let me know
:-)
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Thank you-good information, makes me hopeful. Sounds like you are pretty happy with your new girls.
Like you, I never have had kids...so have stayed pretty perky. A little drop with age, but nothing horrible. I will have to adjust to my new normal. One day and one step at a time....
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About mastectomies and Foobs. I saw a tshirt on some site when I was surfing the web one night that said. "Yeah they are fake - the real ones were killing me." I am gonna get that shirt when I am done with treatment for this disease and wear it with pride. I think i began to hate my breasts the day I found out I had breast cancer and knew I really hated them the day I found out I had it in both breasts. Sometimes I think maybe I shouldn't have opted for reconstruction - but I will withhold that final judgement until I am done.
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Linda wait a few years after they are done. It takes a while to get used to the fake ones. Eventually they feel less weird and do look better. And when I mean done I mean even the tattoos
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thanks Lago - I am patient lol - and really my real ones were heading so far south they were speaking cuban - so unless I end up really deformed the fake ones will be an upgrade
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My mastectomy was 14 years ago and the scars have faded to thin white lines. I have very little feeling in them except around the edges. I did go through a grieving time after the surgery, but once I finished recon and got used to them, I felt much better about them. I never regretted my decision to have the BMX though.
Welcome to the new ladies. There are some wonderful women here to help and encourage you through this.
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the hospital called and gave me my appt to have my port inserted. Tuesday April 29 8am. After the procedure I have to get blood work then meet with my oncologist
Then I start chemo the next day at noon
So once I got off the phone with the appt I cried like a baby!!!
I can't believe that they will insert the thing and use it the same day!!
So here I am petrified again!
Then I scrutinized my pathology report and am questioning how I can have a positive outlook if my cancer is triple positive with macro cells in 2 lymph nodes and grade 3. Everything points to aggressive!!!!
So I'm scared all over again!
Arrrrrgh!!!!!!
What a roller coaster!!!!
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football nut, you will be fine... i will be two years out in august, and you can see how many nodes i had! lump was small, but went crazy in axilla! and had burst out of nodes. so far,so good, no evidence of anything anywhere, and i feel pretty good, and am just so happy to be having energy, i prolly do to much, squeezing as much as i can into each day, well, except for the days when i just let myself do absolutely nuthin! but like you, at the beginning, actually the night before chemo, i was extremely petrified, and that is how i met all these women here on bco. love,hugs,kath
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I know Football - I am on one too - we are gonna be that way as we are just starting and everything is scary. Here is the good part - the cancer is out of your body as it stands right now - they took the tumor and took the nodes - you are getting the chemo to catch any rogue cells - you should have a positive outcome!!
I was just sitting here thinking I need a second opinion - I just read this article
http://www.breastcancer.org/research-news/20140220...
and it basically says that I should be starting herceptin by before 60 days from my surgery for my best odds and the way I am scheduled this is going to be close and maybe not even possible if I am not cleared to start next week as scheduled due to my healing issues from the bmx. It seems i am being treated for the her2- part first - I really am not getting the reasoning to this - he said in total - combining my two tumors it appeared in total they were under 2 cm and both grade 1 - so I am feeling very uncomfortable with this regime which appears to be giving the least aggressive cancer priority....
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Linda thanks for sharing the article. If it's any consolation my MO is the chief of oncology for the credit valley hospital in mississauga Ontario. He was instrumental in getting the cancer centre designed and built in 2005.
He is starting my treatment in April 30th and my surgery was March 17 so my treatment won't start until 6 weeks after surgery - 44 days to be exact. My understanding is that herceptin won't be started until my 4th treatment which would be way after 60 days since surgery
When I asked him if I could go away for a week before getting everything started he said that an extra week won't make a difference at this point. Regardless they couldn't even get an appt for my heart test until April 22 or the port insertion until April 29
My thought is that there are do many studies and perspectives on treatment etc. while I may be scared stuff I have faith in my MO but will ask him about this when I see him on April 30
:-)
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Footballnut I'm a pretty strong gal and I broke down when I went for my port appointment. My surgeon said "we can do this in 5 days, let me see if we can get chemo done the same day." What?! That soon?! But like you I had to wait till the day after to get chemo... but I was in shock so fast.
Yeah the path at the beginning is scary. They thought my tumor was 7cm (actually 6.5cm but only 5.5cm was invasive). I was like who has a tumor that big! totally freaking out. But there are women who had tumors larger and have done well just like there are women with nodes as well. Herceptin is truly a great drug for us HER2+ gals and now they have a few more that weren't approved when I was treated over 3 years ago. More of us early stage gals make it then don't. But we all felt kinda doomed at the beginning. It gets better over time.
Linda I had chemo exactly 5 weeks (35 days) from my surgery. I'm still NED and plan on staying that way. Granted I wouldn't have wanted to wait any longer. At that time they said within 6 weeks. Also they base your stage on the size of the largest tumor, and only the invasive part (unless it's all non-invasive) but having more than one tumor also plays a part. They don't add them together though.
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footballnut - what everyone else has said. I think you will find that your port becomes your best friend while you have it, if they are using it the same day it is inserted, the local freezing will probably still be working so that will help.
Once again it seems we have very similar pathology - I also had grade 3 and 2 nodes positive with macrometastases. Herceptin and all the new drugs for Her2 positive have made such a difference for us, I remember my RO's nurse telling me that I was lucky to be Her2 positive. At the time it didn't seem to make sense as I had been reading and hearing about it's aggressiveness but I understand better now why she said that - so many of the ladies on here read and post great articles about new research and all the advances specifically for Her2
I also asked for a week away that I had planned prior to diagnosis/surgery and my Mo also was agreeable so I had the MUGA test followed by port insertion prior to going away, then started chemo the first day back at six weeks postop.
Linda and Football - My Herceptin didn't start until I started the Doxataxel (Taxotere) - DH portion of the FEC-DH protocol - about four months post surgery.
Re: Gatorade - I didn't care for the flavor when I was on chemo, it can change how things taste for you but it if works for you then that is great , staying hydrated is the important thing
Take care
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hi FBN - we met on the other thread when you were waiting for a diagnosis - welcome to a great thread for us triple positives. You are getting the same treatment I had. Im here in Ontario (Vaughan) so if you have any specific questions please feel free to PM me
lago it actually is FEC-D - the D is for Docetaxol which is taxotere, not sure why the name is different but that was on all my hospital paperwork -FBN you are getting the right stuff like lago said!
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i was told the Her2 positive means the cancer is more aggressive BUT it also means we can have the Herceptin which is targeted right at our cancer and doesn't kill normal cells. I had 6 cycles with the 2 chemo drugs & am continuing it to complete a year
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Footballnut, what they said.
Not fun times but doable. Also if
the hair loss is a concern for you, a lot of us successfully did coldc caps and
kept our hair. There’s a separate thread
for that if you want more info.
Generally, lots of protein, lots of water, and I think probiotics are a
really good idea. I exercised all the
way through it – that also helps. I’m
not saying I set any records or anything but still I did it. In terms of the neulesta shot, the idea is
that if your blood counts get too low it will be dangerous to give you your
next dose of chemo. In my case, my blood
counts always bounced back in time so I didn’t take that shot. You might ask whether it is 100% necessary or
if they can check as your going through it and see…. I am not crazy about having my blood drawn either!Linda, frankly I would take an echo over a mugga any
day. They are pretty much equivalent and
this way you aren’t getting excess radiation.
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FBN, I started my chemo on 2-16-12. My BMX was 12-08-11. 9 weeks later. It was due to an infection and another surgery I had to recover from and antibiotics I had to finish. I think someone else I can't remember was almost 12 weeks out. It is what it is. You do the best you can. Much love.
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Thanks all for the information - you all did make me feel better about my regime.
And Footballnut, we will get through this together with a little help from our friends.
Lago - I don't know why - but it was my MO who made thepoint of discussing the size of the two tumors put together - The largest tumor - the her2+ one was 1.3 cm - all invasive. Initially - based on the US - my breast surgeon thought the right breast tumor was about 1 cm - final pathology only found about 2mm of IDC in that breast and nothing else - the intital pathology - from the biopsy was a combination of DCIS and IDC in the her2- breast - MO assumed that all the DCIS went with the biopsy and a little of the IDC
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Hi All,
You are the BEST! I feel so much more positive once I read your posts! I will check out the coldcaps but have already ordered a wig and also plan on trying to rock it bald. Joan Jett (one of my favourite female musicians) once shaved her head (I don't know why) but she looked awesome!! I want to try to add the look to my rock and roll image!! lol
It is funny how we bump into some of the same people as we move our way through the different boards! It would be really cool if we could hookup via Skype or something like that at some point!!
You have all been so
wonderful to me and I hope to repay the kindness as I don't think that
I've offered much to anyone since joining. I also wanted to let you
all know that you may not hear from me during the time that hubby and I
are away. We go to the chemo class this afternoon, concert tonight
(again - I don't know which I would rather do - chemo or Black Sabbath -
lol!!), then tomorrow morning go to Montreal by train to see my Rangers
play the Canadians (boo). Then Monday, we leave by train to go to NYC
to see my Rangers play the Flyers (boo) in round 1 of the playoffs...
funny thing is my favourite hockey team is the Penguins but I love
NYC!!!! The Rangers are #2!! Then we come home a week Sunday by
train. So PLEASE DON'T WORRY about me as you may not hear from me until
Monday, April 21 once we return. My hubby wants to keep my mind off of
the cancer and occupy my time with other things.You
know, I've always believed that things happen for a reason. I realize
that we don't live forever however my fear is not having a good quality
of life. I have always been healthy and even though I now have aches
and pains I've never seen it as a big deal. At times I am strong and
say BRING IT ON, then it gets closer and I fall apart.I will keep feeding off of you as each of you always helps me to feel better and I thank you for that!!
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FBN glad we could help a bit. Have a great trip and enjoy yourself! Much love
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Well, girls, have my last Herceptin April 21, which is good news. The bad news: found a squamous carcinoma of the nasal cavity (completely unrelated to bc). Irony is that we go through all this bc treatment to get ourselves to a 5-year survival rate of over 90% just to find a cancer with a survival rate in the 60% -70% range for those cancers that haven't travelled out of the adjacent area (stage 1). Apparently, the chemo did a great job of killing most of the (unknown at the time) nasal tumor, but nasal carcinoma has a poor prognosis because it is usually detected late because symptoms mimic common nasal maladies like sinusitis and colds. Will see ENT for second biopsy to determine extent of infiltration on Monday. Treatment is usually surgery and/or radiation. At least I've had chemo to halt progression of disease. Taxotere and carboplatin are appropriate regimens for nasal tumors. So, wish me luck and prayers are welcome...
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