Starting chemo March 2013

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  • rivercottagegal
    rivercottagegal Member Posts: 38
    edited March 2013

    Elmrush...I want to be JUST LIKE YOU when I get my first TCH next week!! Keep moving!!



    liffeybloomer...THANKS for the welcome! Hope your pity party didn't last too long! You didn't update us on all those doc appts....all go well???



    TxSockMonkey...I'm just north of you in Montgomery. Are you using MD Anderson?? Had my surgery at their facility in The Woodlands and that is where all my treatments will be...LOVE them all. Your info was great...Adivan huh? My tumor was small so I didn't have to do chemo first...good and bad there. They were able to tell my lymph nodes were clear but now it confuses me how they'll tell chemo is working because tumor is out and they can't see it being shrunk. Conundrum for sure. Can't help any on the implant question but I'm sure a helpful sister will chime in. Stay strong!

  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited March 2013

    Welcome to TXSockMonkey and BevDe, glad you are with us. TX, I don't have any advice on the breast implants, except to say I am super jealous that you don't have any fat to use! Smile Thanks for all your helpful tips and advice. My hair just starting leaving me yesterday, and i dread those looks of pity too, mostly because I used to be privately freaked out by women in hats and scarves and now I am one of them. My sister may buzz my hair today if she can find her clippers. I have heard that neoadjuvent chemo does dramatically shrink tumors very fast. I read one woman's post that said her BS couldn't even find the tumor and ended up just removing scar tissue.

    BevDe, you are slightly behind  me on the chemo. What "cocktail" are you on? I go for my second one today.

    Lolalou, I bought the generic brand of Claritin too and I didn't get bone pain, but from what I understand it's kind of a crap shoot whether you get pain or not.

    Elmrush, glad to hear your day was uneventful and now that the first one is over, you can start the countdown to being done!

    Cbear, It's been cold here in Maryland too. Can't wait for spring.

  • Starynights
    Starynights Member Posts: 85
    edited March 2013

    Just a little something I discovered. Ive had pretty significant bone pain with the Neulasta. Been taking my claritin as directed for five days. It has been pretty uncomfortable but I have been able to manage. Have been fighting a cold all week and last night I took Benadryl to try to open my head up. Oh my ! I think it counteracted the Clairtin. Woke up about 4 am with severe shooting pains in my pelvic/back area and also in my sternum. So Im on the couch today with an oxycodone...darn it. Its such a learning process isnt it?

  • TXSockMonkey
    TXSockMonkey Member Posts: 42
    edited March 2013

    Lolalou-
    Walmart brand is fine. I'm using CVS brand. Stay ahead of the bone aches from Neulasta, not behind. I discovered I needed to take one every 6-8 hours, not 12. Also, the Neulasta gave me a headache. My doc said Tylenol or Advil was fine to use.

    Rivercottage - I went Methodist, even though I'm 5 minutes away from the hospital district.  I live in Montrose, but I have lots of accounts up your way.  I'm a lighting rep so I get out and about quite a bit.  (Anyone need a chandelier? :-) )  I decided to not go MDA because patients are always in a controlled group and don't get individualized care.  If I were at MDA, they would insist I do radiation.  I don't need radiation b/c I'm node negative and am doing a mastectomy.  I was also super nervous about the plastic surgeons.  I wanted to guarantee I had a surgeon who had done over 10,000 recons and MDA wouldn't guarantee that.  My ex boyfriend was a doc at MDA and said that you occasionally get a fellow doing your recon.  Eeek!  I'm already worried enough about having frankenboobies.  But I've had many, many friends cured at MDA and think they do amazing work.  We should have a very bland, mild lunch sometime.  Lol. 

  • BevDe
    BevDe Member Posts: 3
    edited March 2013

    Liffeybloomer   I am on 4 rounds of AC every 3 weeks followed by 4 rounds of T every 3 weeks . I am triple neg. so I am having chemo first then surgery. How did it go for you today, good I hope.

  • Noor1983
    Noor1983 Member Posts: 12
    edited March 2013

    Hi All,

    I am starting chemo next week.. my unique challenge is that I am 18 weeks pregnant.. I had very hard time last week deciding about termination.. now I made up my mind.. God knows best.. He choose that I got diagnosed during pregnancy.. Me and the baby are in his caring hands and we will be fine..

    I am starting ACT treatment.. taxane is not well studied in pregnancy but since I am yong and my tumor is agressive my hemo/onc wants  to use all his weapons ASAP...

    I dont know what supportive/ anti-emitic treatment can be given during pregnancy.. I hope I will have something that works..

    by the way.. for the port.. do you need G.anesthesia.. I just had MRM 2 weeks ago and I dont want to expose the baby to another anesthesia..

    wish you all the best..

    take care..

  • JoelleKC
    JoelleKC Member Posts: 24
    edited March 2013

    TX sockmonkey - how funny I was calling them my frankenboobies too, when a friend corrected me and we now refer to them at bionic boobies - made me laugh

  • JoelleKC
    JoelleKC Member Posts: 24
    edited March 2013

    So, day 3 post AC and I am tired and weak. taking the claritin, but still have no relief from the neulasta. What should I expect for next week? Do the SE usually worsen or will I get some relief ? I don't have chemo again until 3/25, damn neulasta...

  • elmrush
    elmrush Member Posts: 17
    edited March 2013

    Lolalou

    I bought the Target brand of Claritin and and got my first shot this morning.  I took my first Claritin about an hour before my shot and have not had any issues so far.  Several people have posted that the generic works just as well for a lot less.  Good luck.  I had my first chemo tx yesterday and so far feel pretty good.  Had a hard time sleeping last night as I felt wired from the steroids.  Good luck.

  • the_roadshow
    the_roadshow Member Posts: 21
    edited March 2013

    Noor1983 my heart breaks for you. Is/was your cancer ER+? I hope the doctors know enough that they can protect your baby from harm whilst giving you effective treatment.

    I start chemo tomorrow and I've been a bag of nerves all day today. I'll be trying out a paxman cold cap. Just trying to get my things together now. I'm going to dig out my ski jacket and thermals as the nurses told me the cold cap experience can be very unpleasant and I hate being cold. I'm very fortunate to be treated privately in the UK which means I'll be getting the immune boosting shot (it's not routinely available on the NHS). The nurses just told me to take 2 paracetamol so I'll be asking them about clarityn tomorrow. Don't know how I'll sleep tonight - I'm wired. 

  • TXSockMonkey
    TXSockMonkey Member Posts: 42
    edited March 2013

    JoelleKC - I had to take 2 claritin at first to get me through and then took the 12 hour Claritin D every 6 hours.  I literally set my clock and took it in the middle of the night or the bone aches would creep back in.  My doctor gave me hydrocodone with acetamenaphin but I never needed it.  Try ramping up your dosage.  And I like bionic boobies better.   

    Noor - I will say many prayers for your baby.  My heart goes out to you.

    Roadshow - take a klonopin or ativan to sleep.  You'll be better off tomorrow if you get some rest.  I was terrified before my first treatment, but haven't had any side effects.  I know you're anxious, but you may be one of the lucky ones like me.

    And now for some exciting news!  I just got back from my Onc.  I thought my tumor was shrinking 4 days after chemo but thought it wasn't possible.  10 days post chemo 1 and I knew it was smaller.  When I saw my doctor today he was shocked!  My tumor is half the size!  He said maybe my tumor hadn't read the book on how cancer tumors should behave.  I'm a Luminal A.  35% of tumors shrink but only 4% go NED with neoadjuvant chemo.  I want to be in that 4%!!!  I'm up for round 2 tomorrow with the cold caps.  I'm actually excited now that he confirmed that the chemo is killing the little sucker.   Die tumor! Die!

  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited March 2013

    Back from my second round with the red devil. I know this sounds weird, but I actually like the chemo experience. I have a comfy recliner, nothing to do but play scrabble on my iPhone or read trashy magazines on my Kindle fire and try to tune out my talkative sister. I've learned that if I play the "Oh gosh, I just have to rest my eyes for a few minutes" she stops talking!

    I wish I could help those of you struggling with SE especially from the neulasta, Joelle. I do know that the Claritin helps some people and others get bone pain no matter what. I will keep you all updated if I get more SE from this round.

    Noor, I want to welcome you to the group, but I hate that you have to be here and deal with this during what should be a happy time in your life, so my welcome is tempered with sadness. I know that somewhere on these boards I read a similar post from a woman who was pregnant while undergoing chemo and everything turned out fine for her, so I am hoping for the same for you.

    Roadshow, Welcome to you from the UK! It will be interesting to hear your perspective on health care there compared to ours in the US. Honestly, the chemo experience itself is easy, dare I say relaxing? I think our fear is always from not knowing how our bodies will react. Definitely keep us posted about the cold caps!

    Oh, and my hair falling out was driving me crazy so I dug around in the junk drawer and found the dog's clippers and took them to my head! In about five minutes I was Baldilocks! Felt so much better. If I get braver, I'll change my avatar from my granddaughter's picture to bald Joan!

    Here's hoping for minimal SE for all of you!

  • dimples68
    dimples68 Member Posts: 46
    edited March 2013

    Hey ladies!! Had my 1st chemo today. Was uneventful. Near the end it felt like my sinuses were draining. Drove myself there and home. Ran errands. Got a quick bite at Fridays. Home watching basketball now and making sure I continue the water!! Feeling a little tired now but that could be because I was up at 4:30am a nervous wreck. Took my Claritin and may take some Tylenol but no real SE yet.

  • Lolalou
    Lolalou Member Posts: 30
    edited March 2013

    I went to get my first Chemo TX today and was told by my MO that I don't need to do chemo. I was blown away to say the least. I've met with him several times. He changed my TX plan after seeing my Oncotype score from AC+T 16 weeks to TC x4. He sent me to get a port last week, I filled my prescriptions, bought a wig, started taking the steroids and received the follow up call reminding me of my appointment. It's so unacceptable to walk in today and be told out of the blue that he no longer thinks I need chemo. I went back to my BS and she opened the case files and saw where he put notes saying I was the one that wanted the chemo in the first place and he had told me I didn't need it. That never happened...how could it happen when he gave me RX to fill? I didn't sleep last night in anticipation of today. I'm exhausted.

    I am meeting with a new MO tomorrow so she can review my case and offer her opinions for TX. Wish me luck in finding a competent MO. I checked her background and it looks impressive so I'm hopeful. 

    Everyone have a great night. This lady is heading to bed for some much needed relaxation.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited March 2013

    Lola - I am sitting here stunned.  I have been on BCO for 5 years and have NEVER heard of something like this.  It is absolutely inexcusable.  You have every right to be angry.  I am angry for you. 

    But first things first.  Get a good night's sleep tonight, and talk with the new MO tomorrow.  Take care of yourself first.  However, once you get comfortable with a new MO and get a new game plan, you may want to very seriously consider contacting your local medical board to file a complaint.  If he felt that strongly that you should not have chemo, then he should not have taken all the steps he did to get you set up for chemo.  Especially sending you to get a port - an unnecessary surgery to have it installed, which would necessitate another surgery to have it removed.  Something is seriously wrong with what he did to you. 

  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited March 2013

    Lolalou, I agree with Natsfan. This is incredible - to put you through all that and claim you were the one pushing for chemo? And so what if you were? To change course after all that is unbelievable. So glad you are going to see a new MO.

    Dimples, glad it went well for you today. I went for my second round today too. Last time the fatigue hit me on Saturday.

  • Speedy4
    Speedy4 Member Posts: 136
    edited March 2013

    Lolalou~that's really crazy! I'm so sorry you had to go through all the anticipation and worry only to have him change his mind? I hope the meeting with the new MO will be better and offer you a clearer direction!



    Muga scan was good so MO gave the green light to start chemo on Thursday next week. Kinda freaking out right now and wishing I had more time (for what I don't really know except not to have chemo). Trying to make a list of all the advice from various threads. Hoping I can find a good wig this weekend and do something fun to keep my mind off next week!

  • seastars
    seastars Member Posts: 3
    edited March 2013

    Hi lolalou, I saw your earlier posts and wanted to send you a quick hello since it seems we have similar diagnosis and treatment plan. I'm so sorry for what your doctor did. I wish you the best of luck! I did start my tc today, no port. Feeling pretty good so far : ) hoping it stays this way, want to be able to keep up with my little guys!



    Best of luck to all the other ladies on this board!

  • dimples68
    dimples68 Member Posts: 46
    edited March 2013

    Lolalou that is unacceptable. I'm glad you're going to see another MO. My Onco was a 31 with an average 21% distant recurrence rate. Trying to get that as lower as possible so I had to do chemo. Stay strong!



    I'm starting to get a headache. What's ok to take. I wasn't that impressed with my infusion center and info aftercare instructions.

  • SassyBee
    SassyBee Member Posts: 9
    edited March 2013

    I should be cleared during my appt with my surgeon to start chemo Tues., March 19th. I just thought I'd put my name in the hat for March starters:)

  • Lolalou
    Lolalou Member Posts: 30
    edited March 2013

    I'm sorry I was so mad when I posted that I forgot to mention that I ended up not getting the port last week. The BS told me it was an unnecessary surgery for 4 TX. She called my NO and I called him also that day. He agreed that I didn't need it. I guess my frustration is that he pushed chemo and I felt forced to do it. I ended up getting over the "forced" feeling because I did more research and felt comfortable it was the right treatment for me. I think if he changed his mind or someone in the cancer treatment center changed his mind he should have had the decent to call me between our appt on the 27th of Feb and today (Mar 14). Just unbelievable....

  • Keke713
    Keke713 Member Posts: 91
    edited March 2013

    Hi ladies! I'm 27 yrs old..was diagnosed with triple negative IDC. I just had a bilateral mastectomy on march 1st. Met with my oncologist today and he has me going for 4 rounds of a/c followed

    By 4 rounds of taxol. I have done a little reading on the side effects, but if any of you can tell me what your experience has been personally I would appreciate it! Thank you

  • TXSockMonkey
    TXSockMonkey Member Posts: 42
    edited March 2013

    Lolalou, we have almost identical diagnosis. My mom's was the exact same 16 years ago. It came back last year as stage IV. Now she's really wondering if skipping chemo was right for her. I think you will second guess forever if you don't.



    There's also a cool website called cancer math. It lets you put in your diagnosis and treatment options and spits out variables about likelihood of recurrence/survival.



    If its any further consolation, I'm doing neoadjuvant chemo and my tumor is literally disintegrating. It gives me piece of mind that it's killing any floating cancer cells out there.



    And just remember, someone had to be at the bottom of their class at med school graduation. I would have had a meltdown. I'm hoping tomorrow is a better day.



    And for whoever asked about headaches, my onc said Tylenol was fine.

  • cbear
    cbear Member Posts: 33
    edited March 2013

    Lolalou that is unacceptable. I cant believe someone would put you thru that. I agree with everybody on here. Go to see new MO and then go to the medical board if possible.

    Dimples68 glad everything went well today for you. I never got a headache at all so cant answer that question at all.

    Well at 10A.M. will be having my number 4 of AC. So far so good. Except this week i have swollen eyes and they water constantly. They are even stuck together in the mornings. I will make sure to ask onc tomorrow. Good thoughts for everyoneEmbarassed

  • Lolalou
    Lolalou Member Posts: 30
    edited March 2013

    Txsockmonkey-sorry to hear about your mom.

    I do want chemo. I don't want to have regrets down the road.

  • cherish
    cherish Member Posts: 59
    edited March 2013

    Went to see my onco today and told me that my rigment will be either 4 AC (TC) or 8 CMF. From what she explain is either AC or TC is stronger and dense medicine with server side effect and shorter time to complete the treatment ( 4 cycles about 3 months) CMF is similar type of treatment and same functional medicine and result but with less server side effect and takes longer time to complete the treatment ( 8 cycles about 6 months). My question is if the CMF is less side effect, regardless the time frame, how come mojority of people are taking AC / TC? Is any one got suggestions from onco to use the CMF?



    Dimples68 - my DX is similar with you except my is on right side and the tumor size is bigger than your ( invasive 4.1cm). Do you have to do AC and TC? Have your onco give you other options? Please help!!

  • Denise51
    Denise51 Member Posts: 65
    edited March 2013

    Lolalou,

    How insensitive. Thiss guy iss in the wrong profession. Hope things work out with your new MO.

  • liffeybloomer
    liffeybloomer Member Posts: 72
    edited March 2013

    Wow, so much to catch up on in only 11 hours. First of all, would any of you be interested in a FB page for our group? The Jan. chemo group has one and they seem to like it. It wouldn't replace this board at all, but it could be an easier place to post photos and do other things that are easier on FB.

    Also, please let me know if I have missed adding you to our list on the OP, if I have your user name wrong, or if you would like to be taken off. Sometimes, my chemo brain forgets spelling, capitalization, or even whole words in the time it takes me to read a new poster's name and type it up there!

    Lololou, I don't think it matters at all that you didn't get the port, although I'm certainly glad you didn't have to go through that. I like what TXSock said about somebody being at the bottom of the med school class (and probably also being an asshole during residency!). Sending you ((((hugs))).

    Speedy - The anticipation of chemo really was worse for me than the actual chemo. Getting it started is good because then it will be over sooner.

    Cbear - I have read that dry eyes can be a common SE from chemo. Some women buy or get scripts for eye drops. Maybe that will help?

    Seastars: Welcome to the club no one wants to join!

    Dimples: I have heard also that Tylenol is ok. The day after chemo I get what i call a pre-pre headache but it doesn't bloom in to the full one, so I try to wait it out. It comes and goes and doesn't last for more than a day.

    KeKe, welcome too, but wow, dealing with that diagnosis at 27 makes my heart really go out to you. You might want to check out a blog called "I'm 25 and my boobs are trying to kill me." Her posts are funny and poignant all at the same time.

    Cherish, I have wondered about that same question regarding why some women get AC and others get different regimens. I will have 4 sessions of AC followed by 12 weekly Taxols and then herceptin for a year. It could be size of tumor (mine was fairly big), aggressiveness of cancer (although big, my tumor was not invasive: clear margins, no lymph node involvement), age, who knows what other factors? I also found in doing research for my surgery that MO in different parts of the country advise differently on whether to have a mastectomy versus lumpectomy so perhaps that figures in too.

    Whew, exhausted now. Have to go take a shower with my new baldiness to see how that feels!

  • dimples68
    dimples68 Member Posts: 46
    edited March 2013

    Hi Cherish,



    I'm doing AC dose dense (every two weeks). AC because I'm "young" for all this to be happening. I'm 45. I'm every two weeks because I want to get it done. Also before being diagnosed I was in excellent health. Nothing but a broken bone as a child and a few root canals. The Onc said because of my great health I should be able to recover in time. From what I understand AC is the strongest when no lymph node involvement for us.



  • dimples68
    dimples68 Member Posts: 46
    edited March 2013

    What has everyone been eating? Have appetites changed?

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