Chemo starting in December 2010

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited August 2013

    To the brave and beautiful December ladies - just a good luck wish from me - I'm from the April 2009 forum, and many of us are still active daily on that board almost 20 months later! The friendships you will forge here will stand the test of time! Nobody understands what you are going through like one another.

    A few quick notes - my port hurt WAY more than the lumpectomy. I was totally surprised by that, and swore I'd never get used to having it. But...I did. And after a little while, days and weeks went by without me even being conscious of it - which I never would have believed after they put it in.  AND on treatment day, you will LOOOOOVE that port. It made it so easy.  So try to be brave and give it some time - it will be your best friend. (But I have to say that the day they took it out was the BEST day of the entire cancer journey! That'll give you something to look forward to.)

    Re the timing - I would say 5 hours or so in the treatment room. But for me, once they put the Benedryl in the drip, I would get drowsy and end up sleeping on/off for the rest of the time. I always brought a snack, book, IPOD, etc. and almost never used any of them. Just slept, drank water and went to the bathroom once or twice.  

    NOTE: If no one has mentioned it here so far, PLEASE drink LOTS of water to flush the chemo fluids through your system. It may help you to bring a large water bottle with you, so you can drink more without having to refill it as often.

    After effects - most of you will probably get some steroids, either the few days pre chemo or in the drip before the chemo drugs go in (that is how I got it).  They make you really revved up (super energized - I can see why atheletes take them!) for the first few days.  So the night or two after chemo, i would usually be awake most of the night -like easily from 3-6am.  If this happens, do not be alarmed - it is normal. Keep a book (light reading only!) and/or IPOD next to your bed to distract you.  By the third day, you can feel the effects of the steroids leaving your body (I used to say I could feel Elvis leaving the building) and more fatigue may kick in.  Again, that is normal. Just listen to your body and rest.

    Side effects will vary greatly. As you read this board, women will write in with all kinds of things. The thing important to remember is that almost all of them only stay a little while.  I remember I had the WORST full face breakout after my first treatment - i was totally panicked  thinking it would happen every time.  But it only lasted a week and never happened again.  So TRY to remember "This too shall pass" and stay calm. Easier said than done, I know. But this is scary enough - try not to panic.

    Re the hair thing - I never had good hair, so i wasn't so broken hearted about the baldness thing. I tried to look at it as an interesting experiment. Not to say I wasn't emotional about it at times.....   If you live in a cold climate, PLEASE get yourself a couple of soft cotton caps (like a baby might wear). You WILL get a cold head at night.  I got a natural body wash and used it all over my body/head. It was SO fast and easy - I learned why men take such a short time to get ready to go out - just wash and go! (A small benefit but hey - take them where you can find them.)   It seems like forever, but IT WILL grow back.  I shaved my head in late May (17th day after tx), had my final chemo on 7/30 and I remember I went out without a scarf (called 'going topless') in public in early October. It was def a GI Jane cut, but I wore makeup and big earrings and held my head up and acted like I was a supermodel. (haha)

    Two more things:  The Amer Cancer Soc has a class called Look Good, Feel Better  - info can be found here:  http://lookgoodfeelbetter.org/    They offer it in many places - it was held monthly in my local cancer center.  It is an evening for cancer patients to learn skin/hair/makeup/nail tips from professionals. They give you a beautiful assortment of makeup for you to take home. Each participant gets a kit. They also had free wigs if you needed them.  The time I spent in the bathroom with the other ladies, all trying on wigs and laughing is something I never will forget. I got to be a redhead (briefly).  It is a FUN night out - you can bring a family member or friend.  PLEASE look into it and make yourself go. You will be glad you did.

    And finally - you can do this, ladies. It is so unknown and scary at the beginning. But each step of the way, you will gain confidence, momentum, strength - and while the days may go slowly, the months will FLY and you guys will be writing to one another that you just had your FINAL tx before you know it. Stick together, don't be afraid to come here and vent if you are having a hard time. Lean on family and friends, don't be afraid to let people love and take care of you. (That was the hardest thing for me.)

    If anyone has any questions, please feel free to send me a PM.  I was SO freaked out when my journey started and so many women were so kind to me, that I really want to pay it forward any way I can. (And you will do the same thing when you are done!)

    Oh - if any of you are on TCH (taxotere/carboplatin/herceptin), please consider yourself invited over to the TCH thread. It is a very active group of women who are in all stages of treatment, and many old timers are there too, to help the new ones with their questions. There is lots of good info and support there.

    And with that - it is time for me to remind you - there IS life at the other end of this. I finished my chemo last July  (09) and Herceptin in April of this year.  I got my port out in May. My daughter got married in June. I am working full time, back in the gym six days/week working with a trainer, getting strong and buff (well, sort of). I see friends, family, am active in the community. Life is wonderful.  It is so hard to see when you are in the beginning or middle of it, but IT DOES END. And you WILL be there to celebrate life on the other end.

    Love to all of you - you CAN do this!

    In sisterhood & support,

    Amy

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  • MaryinIllinois
    MaryinIllinois Member Posts: 13
    edited August 2013

    Wow, Amy, what an awesome post, thanks for paying it forward. Glad to hear there is LIFE after chemo/rads/surgery!

    @msjag: Good luck on your first chemo! I was told it will be 3 or 4 hours (between seeing the doctor, getting blood draws, getting IV Zofran/Decadron, and finally the drugs themselves.

    To anybody who has already had chemo, will I feel well enough to drive myself home? I work at the hospital where I am going to have my first chemo-- I plan on working in the morning, and trotting over to the cancer center in the afternoon.

    Mary

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  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited November 2010

    Oh, Amy, thank you so much for such a nice post.  It is so encouraging to hear! 

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  • Lawleigh
    Lawleigh Member Posts: 56
    edited November 2010

    Thanks to all for the support and info.  I have never been a support group person and would never go to one.  But this is amazing to be tied to a group that so understands like no one can.

    @sunflower...have you checked with your cancer center about free yoga and exercise.  I went to my chemo class today and it is amazing the free support from yoga to counseling to a class to help children cope.

    To all of you if you have small children any hints would be appreciated on how to get through this.  My son is airforce and is being stationed in Guam but has to go to Japan for 12 weeks starting mid feb for training and cant take his son with him (he is a single dad).  So Devin who is 2.5 years old is coming to gma's.  OMG I thought I already went through this.

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  • LauraGI
    LauraGI Member Posts: 12
    edited November 2010

    Thank you so much for the post.  I start chemo tomorrow and was headed for bed when I thought I would look for new posts.  I am glad I did.  I read from another post you dont have to be brave, you just have to show up and so that is my motto for starting this process.  I am going through AC-TH so I have a long haul ahead of me.  Glad so be surrounded by so much support.

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  • 3peasinapod
    3peasinapod Member Posts: 9
    edited November 2010

    Hi all,

    I begin chemo (Adriamycin, Cytoxan) on Thursday. I am having my port put in this morning (Tuesday). After what I have read I am a little scared about the port. I didn't know it would be painful, and hurt for so long.  The Onc Nurse never mentioned that and made is sound like a breeze. I'm still uncomfortable from the BMX and lymph node surgery, so I am not looking forward to more discomfort/pain.

    Are there limits on how much weight you can lift after the port is placed? Can you shower right away?

    I bought a wig over the weekend and cut my hair very short. The short hair actually looks pretty good. My daughter is 10 and she helped me select the wig. I think I will just try to wear hats when possible and wear the wig only when necessary.

    Is there a list on this site of what to bring to chemo treatments? I was told to expect 3 hours but sounds like some people have to be there for about 7 hours??

    I am so grateful for this wonderful group - thank you for your information and support. It sounds like we are walking very similar paths. My prayers and best to all of you. Soon we'll have our first infusions behind us and we'll feel better - I think the "not knowing" is the worst.

    3peas

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  • MaryinIllinois
    MaryinIllinois Member Posts: 13
    edited August 2013

    Good luck today, 3peas! Will be thinking about you.

    @Leigh: My son was in the Air Force--he was stationed in Mountain Home. That's why he lives in Boise now, because he loves Idaho. Good luck with the grandchild!

    Mary

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  • caitedidruns
    caitedidruns Member Posts: 26
    edited November 2010

    I begin Chemo on December 15. I am nervous but antsy to get my treatment started

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  • sunflower71
    sunflower71 Member Posts: 130
    edited November 2010

    @Amy-Thank you so much for the positive post! 

    @3peas- I am 4 days post port placement and am doing MUCH better.  It is tender to touch and I can't lift anything, but it is a "doable" pain now.  The first 48 hours were the worst, hopefully you are one of the luck ones who did not experience much pain.

    @Lawleigh-You are certainly going to have your hands full!  Do you have lots of support?

    @LauraG-I hope your first day went well!  Keep us updated on your progress, you are our first one!  

    I am still preparing for DDay on Thursday.  I hope to get some running in this week, but not sure if my port will go along with the idea.  I am training for a half marathon.  Crazy, right?  I am training with the Leukemia Foundation (irony, raising money for cancer and you get cancer) and have raised over 2,000 dollars before I was diagnosed in September.  The race is in January and I will be on my 2nd round by then.  I am going to try and do it.  I refuse to let cancer take this away too.  My favorite phrase: Suck it cancer.

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  • klynnwayman
    klynnwayman Member Posts: 23
    edited November 2010

    @Sunflower71: That is now my new favorite phrase- thanks for that!Smile

    As for the port, I had the bandage changed today, and I have to say that 4 days later it is much better. It is still tender to the touch, but definitely a doable pain. 

     @3peas- I was told I could shower after I got my port as long as I had a shower head that was removeable, so I could avoid getting the area wet as much as possible. Or take a bath, being careful not to get the area wet.

     @Lawleigh- I don't know if it was the best way, but we have been explaining what is going on to my 7-year old son in a step-wise process, and it seems to be working well for him. We started off by telling him that mommy had some bad stuff in her breasts, and the doctors would have to remove them to make her better. Then, we let him know that I would also be getting medicine that would make my hair fall out. For him,this was the most upsetting part- he is scared at the idea of seeing me bald, and made me promise to always wear something on my head. That's ok- I have read that for kids, this is one of the scarier things. My son is an avid reader, and there are several books out there that are great for explaining to kids at their level what cancer is. "In Mommy's Garden" is a book that was recommended to me by the cancer center that I go to.It is a book that is supposely helpful for kids of all ages, and explains cancer as weeds growing in mommy's garden.

    Besides the fear of it all, one of the big problems I am having is the pain in my arm where I had the complete axillary lymph node dissection. It is frustrating, as I am having a hard time finding a place where my insurance will cover anything. I have a lot of "cording", and obvious fluid buildup in my arm. Is anyone else having trouble with a lot of arm pain?

     There is a chance my chemo will have to be postponed until the 16th instead of the 9th for a couple of different reasons. First, my drains from my mastectomy are still in place, and they can't be removed until they are putting out <30mL fluid each. At the rate they are going, I don't see them slowing up in time. We'll see. Does anyone have any experience with how long it takes to get all of the drains removed? Also, I had one of my incisions come apart yesterday, and had to go in and get it stiched back up. Ugh. The fluid buildup at one point was too much for the drain, and fluid started coming right out of the incision area, forcing it to come apart. Not much fun, but I took it all in stride. </p>

     LauraG- I am thinking about you and hope all went well.

    Kim

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  • Lawleigh
    Lawleigh Member Posts: 56
    edited November 2010

    Good afternoon ladies,

    I got my port put in this morning and am now at home. Total time at hospital 6 hours including the 2 hours early.  I feel really good right now but of course the drugs from surgery have not worn off nor has the norco.  They had to give me a muscle relaxer afterwards as my shoulder and back were seizing up.  They were supposed to put the port in the  right but couldnt get it in but they tried multiple times and dug around a bit from what I was told and that is what irritated my shoulder and back they are thinking.  Bottom line they gave up and put it in the left side.

     @3 peas...hope that your port placement went well.  Keep me updated it will be good to compare notes.

    Now the countdown to chemo....9 days

    @Mary....what a small world.

    Hope everyone is doing well, sounds like we have a lot of hurry up and wait which I think is the toughest.  Just kinda want to get the first one done so I know what to expect.

    Leigh

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  • msjag
    msjag Member Posts: 416
    edited November 2010

    has anyone had the chemo without a port?  I was givien a choice, I opted for no port.  I am haiving T/C 4x....  Hope I made  the right decision.

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  • Lawleigh
    Lawleigh Member Posts: 56
    edited November 2010

    I have heard of them using a pic line in your arm but that would be put in early as well (the way I understand it).  But it is external so subject to more issues and limits your activities like swimming etc.  I would think if you have small kids the port is a necessity. Also from what I have read the pic line has to be flushed out quite often.

    I am sure whatever you decided will work best for you.

    Leigh

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  • Lawleigh
    Lawleigh Member Posts: 56
    edited November 2010

    @sam...good luck tomorrow, my thougts are with you and will be all day tomorrow

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  • ebann
    ebann Member Posts: 3,026
    edited December 2010

    Well this will be my 2nd time around with chemo. I have bone mets now just found out 2 weeks ago. The chemo drugs they will be using on me are Abraxane/Avastin every week for 3 weeks, then I will be getting Zometa infusion every four weeks. So every week for the next 6 months. Then I will be getting my pet scan in 4 months and then my Dr is going to let me know what the lifetime maintenance chemo plan is. Oh joy! Right! Right now I am waiting for insurance approval for my chemo drugs. Looking at starting in December. I am beginning Rads tomorrow (Wednesday)

    Amyisstrong: that is really good information you put out there. Brought back memories. There is a life  past all this. Thank goodness!

    Maryinillinois: I had my husband drive me cause they had to pre medicate me and I was in no condition to drive. But I think you usually can drive depends on situation. I was allergic to the chemo drugs that is why they pre medicated me.

    3peasinpod: I had my  port put in the 2nd time now. My experience has been good. I did not feel pain. I felt more discomfort, tender around the site. They told me to use saran wrap over it when I shower for 3 days then I can shower and the sterile strips will fall off when they are ready too. Good luck tomorrow. My first time around I rocked it bald and wore hats, scarves. I hardly wore my wigs. I live in AZ and honestly it was just to hot to bother with them.

    Lawleigh: Wish you the best with your grandson. I love having time with my grandchildren. I wish I had mine more often. I see my little Aubrey at least once or twice a week. She has a cold right now. Her first one. She is 4 months old. It is a lot of work though. I hope you have other friends or family that can help you while you are going through chemo too. Your in my thoughts and prayers.

    Caitedidruns: I understand about being anxious and wanting to get started. I am the same way. I just want to get started so it can end soon. Though I guess it is never ending when it is going to be a lifetime for me. But I know for a fact we will see it through. Put on some soothing music enjoy a nice cup of coffee/tea each morning. Put your mind at peace and it will be here before you know it.

    Sunflower1: You amaze me that you will be doing chemo and practicing for a marathon. I was not capable of getting out of bed a few times during the week. Though you are probably in really good shape and I think that helps a lot. I had just lost 60 pds when I was dx in 2008 the first time. I was so surprised how it just hit me the way it did. I do pray that you have a positive experience. I know some ladies that do. Keep me posted on how you are doing for your marathon. I have been working out and eating right for the past year. It has made a big difference for me. I asked my onc and she said I can still do exercise just light exercise. So that was good to hear. Wish you the best.

    Msjag: I have not done it without a port. I would not want too only because they have a hard time finding veins on my right arm. They cannot do anything with my right arm and that had the best veins in it. So it depends really. A long time ago I would of been fine. Sounds like you just have 4 too so that is nice. If you had more to do then I would of considered the port. Wish you the best keep us posted.

    Sam: Good luck tomorrow!

    I will be checking in later...looking forward to getting to know you all.

    v

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  • 3peasinapod
    3peasinapod Member Posts: 9
    edited December 2010

    Elizabeth - thank you for this information. I can tell you are strong and kind - I know you will do well with your treatment. I wish you well and please keep us informed with your progress.

    Leigh - yes, everything went fine today with port placement on the right side for me. No problems or complications thus far. Felt fine for first few hours but now stiff and sore but nothing too bad yet. Tylenol is working so far. I am sorry you had some difficulty with yours - feel better soon.

    Sunflower and Kim (Klynnwayman) Thanks for letting us know that by day 4 the port starts to feel better. That's very encouraging.

    I wish all of you who are starting chemo in December calmness, comfort, health, strength, and happiness and I will include you all in my prayers.

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  • msjag
    msjag Member Posts: 416
    edited December 2010

    Elizabeth,  Thanks for all your words of encouragement and sharing your experiences.  Sorry to hear about the bone mets.  Keep strong and positive.  Things are changing everyday for us triple negative gals.  Good luck with your upcoming treatments/appointments. 

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  • sharalou
    sharalou Member Posts: 223
    edited December 2010

    Hi To All!  This is 2 weeks post of my second round of T/C. I just started feeling (normal-if you want to call it, yesterday). This second one really got to me. I did work, but felt like crap.  #3 is next Tuesday, and I dread it, but..... then I will only have one more.  Hate the hair thing (but actually my wig is very cute). Don't want to sound so negative (nothing so positive about this ordeal), but I've been there and done this in 2005.  This time it was based on my OnocType test, with a score of 27.  Anyone else out there doing chemo because of the OncoType. I amm in Michigan. 

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  • Lawleigh
    Lawleigh Member Posts: 56
    edited December 2010

    Elizabeth,

    I am so sorry you are having to endure this journey yet once again.  But as 3peas said you do sound strong and certainly caring.  Thank you so much for your kind words and we will all come through this...because that is what we do.

    @3peas I am releived that things went well for you yesterday.  I am doing well also, just a dull ache.  Still having trouble with my back seizing on the side that didnt' work but am sure that will subside shortly.

    @sam My thoughts are with you and will look for you later to check on you

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  • sunflower71
    sunflower71 Member Posts: 130
    edited December 2010

    @Sam- Big hugs to you today, I will keep checking in for you.

    @Elizabeth-It is nice to "meet" you, I am so sorry you are going through this again. Thank you for your encouraging words.  I had just lost 40 lbs this year and had started running in June.  I hope to keep it up because it makes me feel good.  I am glad you can still do light exercise, my onc says it helps with the side effects of chemo.  Are you getting rads and chemo at the same time?  

    @sharalou- I am sorry you are doing this again!  If once was not enough!  Is your schedule every 3 weeks?  What kind of meds do you take for side effects?  Do you work long days?  I shortened my work schedule to 25 hours for chemo with the option of adding more if I feel up to it. I had to quit my previous job because they were not willing to work with me about chemo or doctors appointments.  I started my new job on Monday, they know about the C and are very understanding (woman owned company). I will be thinking of you next Tuesday.

    @MsJag- I was not given a choice about the port.  But I have 6 rounds and then herceptin for a year. It is a pain in the ass right now, butmy onco's nurse swears I will appreciate it by my second round. I think 4 rounds is doable if you have good veins, why go through an extra surgery if you don't have too.

    @Kim- I am so sorry to hear that your arm is giving you so much trouble.  Have you looked on the lymphadema board to find out more information?  Are you getting any physical therapy? It must be very frustrating to have your chemo delayed.  I was suppose to start in November, but my HER2 test had to be rerun and it took forever.  I was extremely frustrated because prolonging it for me made the anxiety build up.

    @3peas- Glad to hear your port surgery went well.  So here we go, our last day before chemo!  I am hoping i will get some sleep tonight.  I am picking my Dad up from the airport this after noon, he is coming down to help me (I have no family near by, I just moved to Florida in June).  We are going out with my boyfriend for a big sushi dinner.  I am going to enjoy my last bite of sushi for the next year and maybe have some wine!  I read to drink lots of water the day before, so I have my Brita filled.  Good luck to you tomorrow, just think the "not knowing" will be behind us.

    @Caite-The anxiety is the worst.  My onc said that BC patients have the highest level of anxiety then any other cancer patient.  Take the time before you start to focus on yourself and your needs as much as possible.  I have spent my time doing the things I enjoy the most.  These days, I appreciate them so much more.  I am originally from NJ, I grew up in Monmouth County. 

    @Leigh-I am glad to hear you are doing better after the port.  They manipulate many of the muscles when they put it in, so shoulder, neck, and back pain is expected.  Hmmm, does this mean we can get insurance to pay for a massage?

    I will try to check in tomorrow after my treatment to let you know how it went.  

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  • msjag
    msjag Member Posts: 416
    edited December 2010

    Ok thanks to all of you..I feel ready and armed for tomorrow!!! have my backpack/cooler ready. Not sure what the hospital will supply and I don't want to be left without any helpful items.  Good luck tomorrow, Sunflower adn 3 peas.  I have to take a steroid again tonight, hope it doesn't keep me up.  Did anyone here take anything more than the steriod the night before?    I will be so glad to get two treatments done by the end of the year. 

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  • DivaJMusic
    DivaJMusic Member Posts: 75
    edited December 2010

    Ok, so it seems like several of us are "tag teaming" around this site.  *sigh*

    Please add me to this list.  I am on board to start on Dec 17th.  It has yet to be determined because of the shortage as to which meds I'll be getting as well.  Either 8 rounds of ACT or 6 of TC.  How many people are finding this to be the case?

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  • sammolisa
    sammolisa Member Posts: 180
    edited December 2010

    Okay,  back from first Chemo treatment and although I was apprehensive at first - it wasn't much more than just getting an IV of saline really.    My cocktail ended up being A/C as they got their shipment of the backorder of adriamycin so I could get what I was supposed to.  So, 4 rounds 2-weeks apart of the Adriamycin and Cytoxan.  Then 12 of the Taxotere.   Right now, 4 hours after the end of the treatment and everything is tasting weird -  not metallic like they said - just doesn't taste like it should.  And I am a bit nauseous.    Nothing to write home about but I had a huge dose of Emend in IV form which is helping and I have more to take tomorrow and friday.  Tomorrow I go back for a shot of Neulasta to help build the lost blood cells, which they say makes your bones and joints ache.  yay!   - More later after I catch up on all the posts!

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  • ShelMel
    ShelMel Member Posts: 207
    edited December 2010

    Hey everyone -

     I got my VAD installed today. I'm feeling good but feeling the pain meds from the surgery wearing off. I'm thinking of naming my port. I know, I'm weird. . .So far, I'm thinking of calling her Noel Bling. :)

    I haven't even started looking for a wig yet. I'm having trouble understaing my insurance coverage and can't seem to get a straight answer on where to go and how to process the purchase. 

    I start my first TC treatment tomorrow morning. A little nervous but ready to kick some cancer butt! 

    I got some Biotene mouthwash and flushable wipes ready to go.

    I wanted to get some Claratin-D to stave off the side effects of the Neulasta shot, but I have to have a prescription for it in my state (MS). Too many drug meth labs apparently use it to make meth so now you have to have a prescription for it. When I talked to the oncologist office today, they said that they won't give me a prescription for it because the side effects of the Claritin-D outweigh the side effects of the Neulasta shot. I'm nervous now. . . From what I've read about the Neulasta shot, the side effects can be very painful for some people. I'm just hoping that I'm one of the lucky ones.

    They did say I could take some Vitamin D though.  **ppffffttt**

    @AmyIsStrong - Thank you so much for taking the time to share your experiences. You made me tear up with your strong encouragement. Thank you! Thank you! Thank you!

    @Lawleigh - Good luck having your grandson with you. I'm sure it'll be a blessing, I just hope that you have some extra help. 

    @msjag I think it's more of a personal decision and I'm sure you'll be fine without a port. But, I did talk to several cancer survivors who opted to not get a port and ruined their veins.... just something to think about. I only have good veins in my right arm and now can't use it because of the lumpectomy/lymph node removal. My left arm veins suck. 

    @Kim - I had a sentinel node removal - and they wound up taking 5 more. I had a LOT of pain and cording and numbness. I'm 2 months out of the surgery and I still have some numbness under my harm and my side/shoulder blade. The pain is much better but still there. From what I've been told it just takes time - if it ever goes away. I hope yours gets better soon. 

    @caited - Welcome to the group. The waiting is the most frustrating part. There's a lot of good information in the sticky posts of the Chemo forum here so you can prepare. Keep us posted and sending you big HUGS!

    @Sunflower - I love your phrase! :) Good luck running that marathon. I think sheer will and determination can overcome a lot of obstacles. I'm keeping you in my prayers that you can do this! :) Good luck on our 1st round of treatment tomorrow. Enjoy that Sushi tonight and sleep well. 

    @Elizabeth - I'm sorry you're going through this again with this new diagnosis. Thank you for taking the time to answer questions. Please know that you are in my prayers as you start on this new journey. 

    @Sharalou-  I'm sorry you're going trough this again. Sounds like both you and Elizabeth are staying positive and strong. 

    @3Peas -  I'm keeping you in my prayers for tomorrow, too. I'll be right there with ya' starting on mine and thinking of you and Sunflower while I'm sitting in my chemo chair tomorrow. 

    @MaryinIllinois- Thank you for putting together that list. I'm going to copy it down and try to keep up with everyone. 

    Hugs, love and blessings everyone. I'll try to get back on tomorrow and let you know how my treatment went, too. 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2013

    It is so great to see you all connecting so well already. My Nov 09 sisters and I write every day still!!! I'm glad I suggested LauraG to sign up with you wonderful girls. We are all together is this fight - sisters for ever.

    Laura - hope your first tx went ok!!!

    Sue

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  • Lawleigh
    Lawleigh Member Posts: 56
    edited December 2010

    shelmel and 3 peas...GOOD LUCK tomorrow.  You will be in my thoughts as you start your first tx.  I was not nervous about the chemo (just anxious) until they delayed me a week and gave me time to think.  So now I just want to get the first one over with and get moving forward, so I will be that much closer to done.

    As far as the Claritin...it is so weird, I have read all over the place that it helps but I asked about it in Chemo class on Monday and they had not heard of that but are checking into it.  So I guess we will see. I don't need an RX here but now I guessI will wait to hear what all of you have to say sa far as the effectiveness.

    Thanks for all the kind words regarding my grandson.  I am extremely lucky and he is amazingly well behaved so that part is good.  Although he is still 2.  My husband is an amazing person (we just got married in Sept after my diagnosis).  It was critical to both of us that if my son ever got deployed and something happened that he would have the legal right to my grandson.  We were planning on getting married eventually so he sped things up and here we are.  I tend to over analyze sometimes and hope that he knows what he is in for.  He is fantastic and is the best caregiver one could hope for.  He also makes a great grandfather (he is 49 going on 10 some days and that just works so well with kids).  Nothing phases him, he just takes it as it comes, and boy has it come this time...lol.

    Sam...I am glad that it went ok.  Be good to yourself and I hope that you have a restful evening. I am sure that you will rally just fine as you sound pretty determined.  We are definatly on the same regimen with the exception of I have the added chance of the clinical trial drug, but otherwise we are right on.

    MS...Have you tried talking to a wig store directly.  I know that the one that was recommended to me by my Cancer Care Center was very familiar with the coding and everything to get your insurance to pay something.  I know that one thing they required was  an RX from my dr.  Mine ended up paying the first 150.00.

    Warm wishes to all

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  • msjag
    msjag Member Posts: 416
    edited December 2010

    wow, I never really thought about port/no port,  I was given a choice, cuz it will only be  4X, now I am worried.  Hope I made the right decision, I will talk to my onc/chemo nurses before my 1st chemo tomorrow.  I was so busy with other research and  worried about the "other" side effects, never thought to ask alot of questions about the port.  Now I'm worried about my veins!! I also can only use one arm.   Anybody else not use a port ?  I do remember the onc telling the nurse that if there is a problem with my viens, then I could go get a port before the second treatment, and she said that would be fine.  Took my steroid tonght, and I don't feel tired...not good!!! 

    I got my wig last night, had to give a prescription from my onc. The cancer center gave us a business card  with salons that will direct bill insurance, and they knew which ones would cover my insurance.  I may have to pay 20%. not bad.  Just so hard to know if I'll even wear it, I think I will prefer the scarfs, hats.  Time will tell!!!

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  • sammolisa
    sammolisa Member Posts: 180
    edited December 2010

    @ AmyIsStrong...  thanks for all the great info! and I cried to hear there is a LIFE at the end of all this.   It was a wonderful reminder.

    @Leigh -  enjoy that baby!  What a wonderful daily reminder  of your future after all this.

    @ DivaJMusic  - the shortage of adriamycin ended up to be filled just in time for me to get the full cocktail so I hope and pray that you get what is needed.   I prayed that God would be giving me the cocktail he thought I needed.

    @ ShelMel   don't know if you knew or not but a vitamin D defiency has been linked to a 30% higher risk of breast cancer -  I went to my gen md in june about the pain in my breast and he did a complete physical and found  I had am D-def.  So I take daily doses - 4000 IU.  May not help with the SE's of the Neulasta but still a good thing to take.   I hadn't thought of taking anything for the SE's for the Neu.  I'll have to rethink that.

    @msjag  - my dr explained why a port is better - if a regular IV fails then the drug is infused into the surrounding tissue of the IV for however long it takes for them to realize it,  by then damage may be done to the tissue because of the toxicity of the drugs.   I  opted for a port.  It was uncomfortable for the first 10 days and now I hardly  think about it.

    klynnwayman...  i too had alot of numbness and a kind of "sunburn pain" that was about 50 times worse than a regular sunburn.   Couldn't touch it, hated to have anything on it - no clothes  - nothing -  Ended up propping my arm on fleece pillow case and that felt good, or i put it under my arm so nothing touched it but the fleece.  There is an end to it however,  or at least for me it has gotten better -  the weird pain don't touch it feeling has mostly gone away but the numbness remains.  It was all down my under arm to my elbow and halfway across my left breast and left side of my shoulder blade.   I only had my left breast worked on - my PS wants to wait to do anything to the right one til after the rads.  I am  weeks post surgery now.  It was around the 4 and a half week mark that it started feeling better to the point it was a noticeable difference.  my physical therapist told me it helps to massage it with lotion to "desensitize it" so my hubby massaged it twice a day - not sure but it felt like it helped - and was also a manual lymph node drainage massage that helped with swelling.

    As for me almost 10 hours post first chemo tx.   Having a little nausea - not bad.  Headache is worse lol.   Took a nap that felt good.  We all have a roller coaster ride to be on for awhile and I am glad to be on it with ya'll.   Funny tho to read all the names here as my real name is Elizabeth, my nickname as a kid was Sam and I go by Lisa and  my uncle called me LeighLeigh. So I know I am in the right place!

    Hugs to all.  we all need the boost of endorphins to get through.  Praying for everyone that is starting tomorrow -- it wasn't that bad.  I kept thinking it was gonna be all fire and brimstone and for now the sickness is very subtle - if I suck on a mint or cough drop it almost makes me forget! I imagine it has to build up a toxicity to get worse ? 

    Lisa

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  • ebann
    ebann Member Posts: 3,026
    edited December 2010

    Hi everyone still did not get approval yet on my chemo. Wish they just would approve and get thing going.

    Msjag: I think you will be fine with only 4 tx. You need to do what is best for you. It is always good to discuss things with the nurses and Dr. One advice I do have for you before you go into chemo make sure you drink lots of water. That makes your veins easier to find. I have to get a prescription for my wigs also. My insurance will pay for two of them. I can tell you even if I did not wear mine often it was nice to have for special occassions. So it will not be scratchy on your head get a cap or meshed cap for your wig.

    Selmel & Lawleigh: My onc recommended doing the claritian and alieve to help with the flu symptoms and aches you get from the injection. It helped me a lot. I trust my Dr she is voted Best Dr. in American, and is the top 100 onc. I will even ask her if by any chance has this changed. They will not be giving me the injection this time with chemo.

    Kim: I had node removed from both arms. 14 on my left, 2 on my right. It has been 2008 since my surgery and I am still numb. I am not sure it will ever go away. I have talked to women who are 6 years out and still have that.

    Sharalou: We are in this together. So hard to believe it has come back and we are dealing with this. I know we can do it again. For we are strong and have a great support here on BCO. I do have my Faith, Family & Friends.

    Sharalou & 3peasinpod: Wish you the best tomorrow.

    Everyone have a awesome evening and peace of mind.

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  • klynnwayman
    klynnwayman Member Posts: 23
    edited December 2010

    Hi Everybody!

    I just received the results of my Oncotype and my BRCA-1 and -2 results today. My Oncotype score is 47, which is pretty high, but doesn't really affect anything, as my doctor had decided to give me chemo regardless. I found out that I do have a mutation in the BRCA-2 gene, which was a little upsetting to me. I have 2 younger sisters, so I feel grateful to at least know this information so they can get right on it and get tested themselves.  Unfortunately, from what I understand the recommendation will be to remove my ovaries after the chemo is over.

    Leigh- I hope you are feeling alright after getting your port put in...has the pain improved? I'm now at day 5, and my pain is almost gone.

    msjag and 3peas- I will be thinking of you tomorrow. Good luck, stay strong, and let us know how it goes.

    Elizabeth-  I'm sorry to hear about the bone mets and that you have to go through this again. How did you find the bone mets, if you don't mind if I ask? I'm sorry also to hear about your insurance taking their time- that must be so very frustrating. We all have enough to worry about without having to deal with them, you know? Also, didn't you have radiation today? How did everything go?

    Sharalou- I want to say that as far as I am concerned you should never worry about sounding negative- we can't stay positive all of the time. I have learned over the past month that sometimes I am just going to feel like shit emotionally, and that's ok. I'm sorry that you are having to go through it again.

    Sunflower71- I actually did go see a therapist about the pain in my arm, and got some relief, They showed me some exercises to help heal the cording, and showed me how to wrap my arm appropriately and with the correct bandages.

    sammolisa- thank you for sharing about your treatment today. I know that hearing the details of how one feels before, during, and/or after is really something I feel the need to hear.  I think it is the unknown that is really scary to me, so I really appreciate the sharing...it helps.

    ShelMel- I think it is really cute that you named your port, I have to say. Smile Good luck tomorrow.

    Much love to you all,

    Kim

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