Stage IIb/Neoadjuvant Chemo

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kltb04
kltb04 Member Posts: 1,051
edited June 2014 in Stage I Breast Cancer

Hi all...I have been on the boards for a few weeks but new to this forum.  I had an ongoing thread called Just Diagnosed/Fearing the worst with a few people I talked to but I thought I would post a new thread since I am no longer either of those things!  I also post frequently and with an excess of words, on March 2012 Chemo.  I am a married mother of 2 girls (8 and 11), a certified teacher who hasn't taught in years, was working PT in retail until my dx and now at home full time.  My parents are actually living in an RV in our yard and they have been a great help.

My story in a nutshell: My APN discovered a "ridge" in my right breast on my annual visit on 2/5.  I am 38, never had a mammo, so a whirlwind ensued...diagnostic mammo, biopsy, meeting with BS and MO, SNB, staging PET scan, CT/Muga, port placement, complications/infection from an infection (culture grew in my blood, no idea of source), re-excision of SNB site, drain inserted.  Yesterday, I got the drain out and started chemo.

Which brings me to the other part of my topic.  My BS/MO suggested the neoadjuvant chemo before surgery although my tumor is not particularly large (3 cm according to MRI and mammo, the PET scan seem to show even smaller).  The SNB showed 1/4 nodes involved, but the neo chemo was the treatment plan before those results were even available.  Any others here going that route?  Deal is done now but I was just wondering.

As I said, first chemo was yesterday.  A/C x 4 and then I there will be 4 more but I am not sure of the cocktail.  Nuelasta shot today and I am just waiting for that horror to kick in.  A lot of people on my chemo board have bone pain with it.  Main SE right now are just fatigue, total and complete disinterest in food, mild nausea but more of a "lump in the throat" feeling that makes me feel like I will be sick if I try to eat.  Currently working on a Boost protein drink and trying to get it all down.

Well, that's about it for now...

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  • 7of9
    7of9 Member Posts: 833
    edited March 2012

    Hi there...similar diagnosis tho my tumor I felt (thought was a tiny cyst...HA) was tip of the iceberg and I have a couple ranging from  (1 cm to 2.5) and it's diffused in left breast. My surgeon wanted Neo Adjunct to shrink down and give her the best chance at clear margins after masectomy (I will be pushing for a double) lowering reoccurence and future risk in other breast since the damn left one blew up on me at 40, I can't imagine the right one holding out for another 30 yrs or so...

    I just finished my fourth AC last week (Yah!) though I don't feel much difference in the tumor/s though my Oncologist thinks the largest one has shrunk a little (1/2cm?). He isn't worried because he said mine are ER PR positive and we still have 4 rounds of Taxol to go and the hormone therapy which I won't start till later this year though that puzzels me (he said he's going off of studies that show it's less effective to start it now?!).

    I have such lumpy breasts its still hard to feel anything other than the pea size one closest to the surface which doesn't feel any smaller to me so it's pretty discouraging...thought the chemo has been very manageable I have to say. Neulasta? Nothing! It works great and I've had zero side effects thankfully. I went bike riding today in fact and can keep up with my 2 year old day to day.

    They can't feel any lymph nodes but one looked "reactive" in my ultrasound. I didn't let them biopsy it, I couldn't take any more bad news at the time! Besides my surgeon said it wouldn't change what she wanted to do. So here I wait for Taxol to start next week...

    Good luck to you! Hey, fyi my nurse told me that there is a chance hair can start to grow/grow back during Taxol...I'm praying mine starts coming back (didn't loose all, but damn close and it's buzzed) so I can forgo the wig during a Hilton Head trip and sport a baseball cap in the heat!

     

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  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited March 2012

    7if9 & Karri,

    Just wanted to say hello and tell you your pathologies are very similar to what mine were .. And I'm 7 years and 3 months out! Hope this puts a smile on your face:))

    Marcia

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  • sherry67
    sherry67 Member Posts: 556
    edited March 2012

    Hi just wanted to say I to had neoadjuvant chemo as well with a complete response,I was in a clinical trial and received carbo,abraxane and herceptin for 18wks than AC after surgery than radiation..then herceptin for a year as well as Tamoxfen...the neulasta shots were hard I had very bad upper chest bone pain about 4 days after receiving the shot..I had a bad time since day one with treatment it took 2.5 months for them to find the right nausea meds..hope everything goes well for you



    Sherry

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  • MizMarie
    MizMarie Member Posts: 332
    edited March 2012

    I had neoadjuvant chemo as well, and my 3.4 cm tumor shrank 90% in volume by the time I had surgery.  It did not seem noticeably smaller until after the 3rd tx, but from there on, it melted pretty dramatically.  30% of the tumor was DCIS, so I had an excellent (though not complete) response.  Neoadjuvant was recommended because the original tumor took up a lot of real estate in proportion to my breast.  

    I had no real difficulty with Neulasta, just mild hip and leg pain, which was relieved with ibuprofen.  I developed neutropenia after my first chemo, and believe me, Neulasta was a gosend after having been through that.

    Oh, and if you put your Boost or Ensure in the freezer until it is slushy and then sip it through a straw, it is way easier to get down.  Good luck!

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    Thanks all for the input/support - I really love the chemo board I am on but 95% of them have already had their surgeries so it helps to hear from others who have been through the same.

    Not incapacitated with the chemo but definitely down and out...still some mild nausea (even with the Zofran)...tomorrow is my last day of the antibiotics that I have to take on an empty stomach and feel that might help some.  (I developed an infection between the time of my SNB and my port insertion surgery that was cultured in my blood - still don't know where it came from but I have to be on antibiotics for 2 weeks to ensure it is gone).  I know I am not supposed to lose weight on chemo but I have lost about 10 lbs.  I have plenty to lose (I could lose another 50 and still not be at my ideal weight) but I know it isn't the time to be losing!  

     The second day/night after the shot was the worst - it wasn't the long bone pain I had been warned about, it was just allover pain...I told DH it felt like my skin hurt!  

    Anyway, I have labs tomorrow to check my counts - which involves an hour long drive/trip to the MO but I guess at least it will give me something to do!

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  • Momine
    Momine Member Posts: 7,859
    edited March 2012

    I had neo-adjuvant, but my tumor was huge. However, more and more oncs are apparently moving to neo-adjuvant, even for smaller tumors.



    As far as neulasta, I had some minor pain with it one time. The rest of the time it did not bother me at all, and it got me through 8 chemos with close to normal blood counts the whole way. I am a fan.



    Try to move as much as you are able. I started chemo in July and got a huge hat, then took my dogs to the park early in the AM before the sun really hit. It was such a relaxing nice way to start the day and the exercise helped me feel normal.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    hillck - I have never in my life suffered from a lack of appetite so this is a new one.  Just sent DH to the store for hummus, cheese dip, almonds, and crackers.  These are the only things in the world I could think that I could eat tonight.  LOL.

    Momine - that is what my surgeon indicated - she said she prefers to see it shrink, see what works, etc.. she is young and seems to be "with it" as far as the latest and greatest treatments, presents at conferences etc... I am going to start trying to walk tomorrow at least a little bit.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    Thanks. They are brothers - both fat and spoiled. We had a third that was younger and really funny but we just had to "rehome" her this week. We had her from a tiny kitten and about a year ago she decided she hated one of the boys. Beat him up and freaked out on him. Poor cat has spent the last 6 months in oldest DD's room hiding. My dx was the straw that broke the camels back. She was really wild and spastic and was always running all over us to the point I was scared I would be scratched to bits when she went on a tear So we gave her to someone who works at the same company DH works at. So now we are down to two and that's how it will stay!

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  • lele3737
    lele3737 Member Posts: 45
    edited March 2012

    Kltb (and all!) I too am a neoadjuvant girl! I will tell you, doing chemo first was, for me, a blessing. I was able tosee (and feel) the main lump go from 40 mm to 7!!! From positive nodes to none (from the surgery biopsy)! I have passed the chemo and surgery phases of my tx plan, on to rads.



    Neulasta wasn't great, I got pain in my hips. But, a trick I heard and got the ok from my onc, taking allegra the day of the shot helped. Ask your onc to see if you can try it.



    I am not going to lie to you, chemo sucks, big time. But I found the humor in life, the sweetness coming from people I never expected, and love from all directions. And that is what got me through such a terrible crappy thing like chemo.

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  • rozem
    rozem Member Posts: 1,375
    edited March 2012

    hi karri

    i had neo chemo - with her2 positive tumors they like to do chemo first to make sure you are responding to the cocktail they give you.  Her 2 is aggressive but responds really well to chemo especially with the addition of herceptin.  It also allows you to start treatment right away instead of waiting to heal from surgery.  My onc likes to start all her2 over 2cms on chemo right away

    I had a complete response to chemo - no invasive cancer in the breast or nodes

    hope you have a great result

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  • Momine
    Momine Member Posts: 7,859
    edited March 2012

    Kit, yes, your appetite can get sort of funky. There were times I ate some strange things, like fajitas from TGIF. It is definitely a good idea to put yourself on some sort of eating schedule/diet to make sure you get some nutrition. Also make sure to get lots of fiber. Fiber is your friend.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    Thanks for the continued responses - lele, I took Claritin so same idea...I don't know if it helped but it couldn't have hurt and I will continue to take it during the time of the shot.

    So much better this week...my WBC was still low (3.6, not bottomed out but still below normal) so I have been lying low this week.  Appetite is back with a vengeance so no worries there.  Had some constipation issues so I started on a stool softener.  But feeling better lets me know that this is definitely doable!

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  • LyndaMarie
    LyndaMarie Member Posts: 92
    edited March 2012

    Hope it is alright to join this thread as I will be starting Neoadjuvant chemo sometime soon (2-3 weeks). I am still screening for a study (ISpy2) which is taking a bit longer. I have PET today, repeat biopsy for clinical trial screening Monday and then I wait for trial results. Waiting is hard. I suspect I will get my port the week after Easter. I am inspired by you all. You are helping me know that I can do this. THANKS!

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    Thanks hillck.

    Lynda - please do - it helps to go through this with people with similar pathologies.  Looks like we are very similar except for the HER2 status.  I am going to just post on here about how things are going and hope others do the same.  Also, when you start your chemo, hop on a board for that month (April or whatever) and post there too - even if people are going through it at a different time/stage or even different drugs, it helps to see what their SE are, how they are coping etc...

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  • LyndaMarie
    LyndaMarie Member Posts: 92
    edited March 2012

    Yesterday I found out that the tumor is multi focal so I really need to say tumorS. That means that I will definitely have mastectomy after chemo is done. I was actually a bit relieved to know I did not have to make that choice. Strange. I guess I will still have to decide if I will do single or double...

    Karri - I also am the mother of youngsters. My kids are almost 11, 9, and 7. They all have spring birthdays. Once I have a start date, we will tell them the diagnosis and plan. Right now all they know is that mom is at the Dr. alot and having many tests and scans. Right now they don't have too many questions but they haven't heard the word cancer yet either. How are your girls doing?

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    Lynda - I cannot imagine that I will have anything other than BMX...I know that is a hot topic on these boards but it is the only choice that I am comfortable with.

    My girls seem to be fine - we told the oldest the basics right after I got my biopsy results - she was very "suspicious" as I usually was the one taking them to and from school, home all the time and she overheard whispered conversations.  We told her breast cancer, very treatable, etc...with my younger one, we just told her a "boobie problem" for the first few weeks.  After I got my wig and we told her I would lose my hair from the medicine, we went ahead and used "the C word" but again, tried to keep it positive.  So I don't know if they are just putting on an act or if they are really ok, but they seem to be hanging in for now. 

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  • LyndaMarie
    LyndaMarie Member Posts: 92
    edited April 2012

    Had a very busy week with work. Trying to get caught up between tests and treatment. All my screening came back normal. It was such a relief. I am scheduled to get my port tomorrow morning and begin chemo next Friday. Friday the 13th as it were. We told the kids and they seem to be fine. They have questions but do not really understand what is to come. I will know about the study for sure at the beginning of next week. Then I will know if I will be using a trial agent or not in addition to the taxel.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited April 2012

    Good luck with your port. I found that to be very manageable as far as the after effects. Just really sore the next day. It makes your life so much easier as far as blood draws and infusions. I have my second chemo Monday. Started losing/shedding the hair last weekend so I cut it short and then buzzed it to a three with DH clippers. Haven't given it a second thought. Don't love the look obviously but it hasnt bothered me much.

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  • kltb04
    kltb04 Member Posts: 1,051
    edited April 2012

    If anyone reads this and wants to PM me about neo chemo or anything, feel free.  I am going to remove it from my favorites as I mostly post on a chemo board here...but always like to hear from people going through similiar situations...

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  • vballmom
    vballmom Member Posts: 426
    edited April 2012

    Hi everyone!  I have had a lumpectomy and re-excision and do not have clean margins. Still have extensive DCIS in all of the margins but nothing invasive.  I am exploring the option of having neo chemo and doing a BMX or UMX later.  Being Her2 positive has me more anxious to have the chemo sooner rather than later. Plus it will give me time to explore the prophylactic option plus the reconstruction options.

     ETA:  Doctors agree - mastectomy tomorrow!

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