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CMF Question

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Comments

  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007
    Ginny,

    Thanks for the encouragement! I am just SO scared taht something will happen, because of not getting a shot... my immune system isn't that great to begin with, and if something happens and I end up in the hospital, I will strangle that onc! Also, I'm afraid of dying from the txs!

    I don't look good with short hair, in fact, even before the mast, I look like a boy, unless I have hair!

    HARLEY
  • b445
    b445 Member Posts: 980
    edited August 2007
    I all! Yes I'm still around! I've been pretty tired and don't get too far out of the Wagon Circle when I get on lately. I keep you all in my prayers!
    I did #11 of the Abraxane and # of the Avastin last night.
    I've only missed two doses so far. One I could hardly walk so they held it the other we skipped so I could go to Pinkstock in NY. We had such a wonderful time there I didn't want to come home.
    If you have never been to Niagara Falls I highly recommed you find a way to go. it was AWESOME!

    got to run but want you all to know I'm thinking of you!
    HUGS & Prayers Love ya
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    CY..SO GOOD to hear from you. It sounds like you have had a few rough bouts with this round of chemo. You hang in there, gal! I'm also glad that you had fun in NY. It's been several years since I've been to Niagara Falls but I loved it, too. I'd really like to go back.

    Next time I will search for you on the Wagons thread. So how many more treatments do you have to do and is there medication that you will take when you get done with this chemo?

    Thanks for the update. We are all thinking about you. HUGS across the miles.

    Rita
  • candie1971
    candie1971 Member Posts: 2,467
    edited August 2007
    Cy and Ginny,
    So good to hear from the both of you.
    Ginny, glad u are doing well.
    Cy, I have been looking at all the pics from Pinkstock. Gosh, how I wish I was there!!! Hopefully, next year. I have just started going on the "Circle". Love it there!
    Harley, You will get through this. How many tx have you had now? 1?

    Take care all,
    Candie

    ---------------------------
    life's a long song-Jethro Tull
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    Good morning everyone!

    It sounds like everybody is doing pretty well! That's good news. Those hot flashes don't sound like they're any fun, Ginny. I just don't think it's fair. I've already done them once and there's a chance I will have a repeat with the Arimidex. YUCK!!! You have my sympathy........been there and done that!

    Candie, I've heard so many people mention the Circle thread that I think I may visit it and see what's going on there. Thanks so much for your continued support to the CMF gals. You ARE appreciated here.

    Rita
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007

    Candie,

    yes, I have had ONE TC tx so far, and 3 more to go! My next one is on Aug 28th. I am just getting over the last one, and now here comes another!! I didn't really have too much se's from the chemo, but since the butthead onc won't give me Neulasta, I have to let my wbc go dangerously low, before getting neupogen. I am so scared of getting an infection and dying from the chemo...

    Thanks!
    HARLEY
  • bajalady
    bajalady Member Posts: 14
    edited August 2007
    Rita and Ginny: Greetings, it has been many months since I last wrote. I did lurk though to keep up with you both. My treatments went pretty well. I had constipation, diahera, heartburn, fatigue, headaches, etc. My hair thinned out, but I still had it colored and the hair dresser still had to thin in places. I used the Biotene teeth products and the recommended hair products. Sometimes, I was real moody and maybe didn't treat my allies the way I should of. I got mad at my insurance company many times - & they are one of the better ones. I had some of the best surgeons/oncologists in S/Ca. I do not have to do radiology. I still have to do reconstruction (which was started with mascestomy).
    I am telling all you new ladies this because it is DOABLE. It is scary, your family and friends want to help, but you are the one on the journey. You need to tell the folks closes to you, that sometimes - you might not be that nice.
    You will get through this - you may have less hair - you may be skinny or you may be chunky - but you have joined the strongest organization of women world wide.
    Also, remember what ever you do for treatment is an example for your daughters, grandaughers,daughter-in-laws, sisters, etc.
    Once again, Ginny and Rita - I am glad you are both doing well. I have followed your progress - but lurked. I finished my last chemo on Aug 1 - so Rita we slid into home base at the same time - yipee for all of us.
    carole
  • socallisa
    socallisa Member Posts: 10,184
    edited August 2007
    Rita, just wanted to say, I too went thru hot flashes twice ...armidex will do that...I found they went away with the neurontin they prescribed for my neuropathy...later it was actually reported to be a good rx for the hot flashes..
    Worked for me!!
  • candie1971
    candie1971 Member Posts: 2,467
    edited August 2007
    Harley,
    My counts went down some but never dangerously, so I never had those shots. Yours may do the same. Glad you havent had too many se's. I am praying for ya--you will be ok.

    Rita, come and join the circle. You may recognize some people there. It is very supportive , also , and fun!!

    Hugs and prayers,
    Candie

    ---------------------
    life's a long song - Jethro Tull
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007
    Candie,

    You mean, you NEVER had to get Neupogen shots, either? And you didn't get Neulasta? Hmmm... I had to get Neupogen, since the wbc went down to .9. I don't want that to happen again, because I am so scared of infection, but my onc is "doing me a favor", by seeing me, when he's losing money. I don't know what to do, because to me, I feel like I am getting inadequate care, if I have to wait for the wbc to go WAY down, and risk getting an infection! Other than this, no really bad symptoms.

    Thanks
    HARLEY
  • b445
    b445 Member Posts: 980
    edited August 2007
    I never had to do the shots on CMF, but am doing them with the Abraxane. I do the shots three times a week.

    Rita,
    I have done 11 doese of the Abraxane and 4 Avastin. I will have scans on Wed and then do #12. I see the Onc on Thursday to get the results and see where we go from there. I'm sure they will keep doing the chemo as I still have a lot of pain I don't think the tumors are gone yet and that is the goal. Will let you know next weekend.

    Candie i'm so glad you checked out the Wagon Circle. THere are over 100 gals that been fairly active on that forum. It's great! It covers just trying to get on with the daily things we all go through from those that are going through this for the first time to those of us that have a new or reoccurance to mets. They are the best support group I have found all around. We laugh we cry we hold each others hands.

    The CMF forum is great for specifics that apply to CMF as are the other forums that apply to something specific. They are good places to connect with someone that is going through exactly what you are. I'm grateful to the specific sites.

    But please do sheck out the Circle. It moves really fast as there are so many on there but it is a lot of fun to scan and keep up with everyone if nothing else

    Hope you all are doing well. Oh I was prescribed the nuerontin for hot flashes and it did help

    Hugs and prayers
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    Hi gals!

    I had one neulasta shot on the CMF regiment. It was right after chemo #3. It took care of the low white blood count problem and that was all I needed.

    Carole, so glad to hear from you again. Congrats on finishing the chemo! Are you all done now or do you have to do rads and take Tamoxifin or Arimidex still? As for the mood swings while going through this journey, I think we all had them. Well why wouldn't we?????? In fact, I still have them.

    Candie and CY, I think I will join the circle. I lurked a little bit the other night and did recognize several names and pics. It looks like fun. Thanks for the invite!

    CY...good luck with your scans on Wednesday. Please let us know what is coming next and how they came out.

    Thanks Lisa and Cy for the into on the hot flash prescription. So far, I am doing fine on the Arimidex but today marks only the first week. I have written down the name of this prescription in case the hot flashes hit. Although I'd like to think that I'm one of the lucky ones, I imagine it will take awhile for this to get rampaging in my system.

    How's your energy level, Ginny? I hope you're enjoying your vacation! Be sure to tell us all about it when you get back.

    Melanie....where are you?????? I miss you and am concerned!!!

    Rita
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited August 2007
    hi all, i have not felt much like writng lately, I'm sorry.
    basically I am okay. I had my 7th treatment yesterday. I felt as though I never fully recovered from # 6. My onc had upped my doasge. We had spoken about it last time but I didn'r kow that she had done it. I threw up quite a bit when I came home from treamtent yesterday. I am doing better now, let's see what the week brings. Yesterday was also my 19th anniversary, which got me all emotional, which I'm sure didn't help.
    I hope that everybody is hanging in there.
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007
    Melanie,

    So sorry you had a rough time with your treatment! Only ONE more to go!!

    They shouldn't be increasing the dosage, without asking you about it!

    I've been thinking about you, and hope you feel better soon!

    Hugs,
    HARLEY
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    Melanie, I think the effects of the chemo become more and more cumulative as we continue to take each treatment. My last two were the worst for me, but I made it and you can do it, too. It won't be long and you will be walking out of that chemo room for the last time and probably crying your eyes out, just like Ginny and I did. It will be such a relief. It does take a few weeks but when it's over, your taste buds begin to return and most things begin to taste good again. I still have a little trouble with water, which seems to have a metallic taste to it and I still have trouble with the smell of Chinese cuisine, but other than that, I'm pretty much back to normal. Look forward to that and it will get you through.

    Please keep us informed. You've been such a vital part of this thread that we want to be there for you for the rest of this.

    Rita
  • candie1971
    candie1971 Member Posts: 2,467
    edited August 2007
    Melanie, I felt the same way Rita did. Last 2 treatments were tough but I got thru it. You are almost there!!!

    Harley, How are you feeling?

    Rita, oh yes, do join the circle--so nice there--they are great bunch---i joined the Not So scret Pal list too. They also make afghans for people who need them--I am learning to crochet so I can contribute the squares too.

    Cy, hope scans go ok

    I get results from my brca tests tomorrow--gosh how I hope they come back negative. I also just found out I have to have knee surgery on Sept 5th--I have a miniscal tear. It just never ends---

    Take care all...be back soon

    Hugs and prayers,
    Candie

    ---------------------
    life's a long song- Jethro Tull
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    Candie,

    I have my fingers crossed for you on the BRECA results tomorrow. Please let us know the results and just keep thinking NEGATIVE...NEGATIVE.....NEGATIVE!!!!! Also, sure hate to hear about your knee surgery that is pending. You are right. There always seems to be something, but we are tough and we can do this. Thanks also for steering me toward the Circle. I have finally posted. It seems like such a great thread, but I have the fear that I won't be able to keep everybody straight. It goes so fast!!!! I looked at the secret pal thread but I think I'm too late for this round, which is probably just as well since I sometimes need to do things in "small bites." I'll look forward to see in the Circle, too.

    Good luck on the scans, CY. You're always in my thoughts.

    I bet Ginny is having a ball in Greece right now. Anyone except me a bit envious????

    Catch you all later.

    Rita
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007

    Hi, Candie:

    I am doing ok, but very depressed, because this week, I'm dealing with the inevitable hair loss, that comes with TC, since my onc wouldn't give me CMF... sigh... So, tomorrow, I go to the wig shop, and the man there said he would cut my hair "really short", so I can just wear my wig. My dh said that it won't be a problem to have hair all over the house, but I am scarred emotionally from this. I already had some hair loss from my thyroid disorder, but now I will lose ALL of my hair! I think this is even worse than losing my breasts.

    Thanks for asking.


    I hope your BRCA test results are NEGATIVE!!!
    Thanks,
    HARLEY
  • shrink
    shrink Member Posts: 131
    edited August 2007

    Hair grows back. What upset me so much about the hair loss was that it was such a visible sign that I was really sick. Everytime I looked in the mirrow (sans wig) I was reminded that I have a very serious illness. Before it fell out, I could fool myself once in a while. Anyway, at night a wore a little night cap which caught the hair so it wasn't all over the bed.

  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007

    shrink,

    I don't know all the particulars about your bc, but I figure that we are ALL better now, because we are going thru the treatments! We are survivors! Seeing my bald head won't tell me that I'm sick, because I am NOT sick!

    The reason we are taking such drastic measures with the chemo and everything is to MAKE SURE that it won't ever come back!!

    Take care,
    HARLEY
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    Thinking of you today, CY as you visit the onc and make plans for the next part of your journey. Hang tough!!!

    HUGS....

    Rita
  • shrink
    shrink Member Posts: 131
    edited August 2007
    Harley - I was speaking solely for myself when I said my image in the mirrow reminds me that I am sick and that this is a very serious disease. The question for me is, if I'm not sick, why am I pouring all of these toxins into my body in in order to get and stay well? As far as "making sure" the cancer doesn't recur, all I can do is partner with science to stay "cancer free" for as long as I live. To be honest, I am sure that there will always be uncertainty but I'll have to learn to live and live well with it.

    All the best, Shrink
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007


    shrink:

    I guess I was saying that at least for MOST of us, we ARE getting BETTER, and at least in my case, I was never sick. I am just getting chemo to prevent any recurrence, since that scares me! But, if you aren't one of the lucky ones, then I am sorry... I didn't mean to make you feel bad.

    hugs,
    HARLEY
  • b445
    b445 Member Posts: 980
    edited August 2007
    Hair is an important part of us. It does shock you and even depress you when it first comes out. But I look at it like this is my battle scar. and I wear it proudly cause I'm still here to do so!
    I wear scarves and hats out of the house but in my house I don't. I have shocked a few people because they did not relize how hard this treatment is hitting me. Most saw me go through the CMF treatment and most didnot relize I lost over half my hair. This treatment I'm on now I've lost 99% of my hair! Yes I still have fuzzy hair, it's kinda wierd.

    Don't let it get to you. there are so many other things in life that are more important.
    For those that have been doing the treatments and are feeling down. Hang in there one day they'll be over and you'll be on the mend. The goal is to live each day to it's fullest and enjoy those around you. Strive for a better tomorrow!

    I was not able to get my scan cause my port line became infected so the scans and surgery have been rescheduled for next week.

    Once again Hang in there you'll have bad days and good days. I always try to find something, just one little thing in each day that is good and be thankful for it!

    Hugs and prayers
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited August 2007
    Just checking in and saying hi. Treatment 7 has been tough. And don't you know it, my 5th period during chemo came on treatment day...the cramps have been intense. It's not giving up easily.,lol. Today is day 6 and I ventured out for a little while and it was too much for me. I went school supply shopping with my son (which I love to do) and then to the diner for breakfast and after 10 minutes in the diner I was praying for my bed.
    Well, I'm almost there...there really is an end in sight!!!
    Chins up ladies!!!!
    -Melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007
    Melanie,

    It's good to hear from you! Also, good news that you are up and about.

    I have my 2nd treatment of TC on Tuesday, but I'm trying to be positive - after this one, I'll be halfway through!

    Only ONE more treatment to go!!!! Yeah!!

    HARLEY
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    Harley...I will be thinking about you on Tuesday and hoping treatment #2 goes well. You are so right......after Tuesday, you're half done! :-)

    Bless you CY! You always seem to know the right things to say to make all of us feel better! I saw the Niagara Falls pics and love your hat! Despite all the things that you've been facing, you still seemed to be enjoying this trip....as indeed you should. Please keep us posted on what's going on with you.

    Melanie, so sorry that #7 was so tough on you. Be kind to yourself this next week and don't overdo. It won't be long and #8 will be over and you'll heave a big sigh of relief. Things will get better! I promise!!! :-)

    I've been taking the Arimidex now for two weeks and hanging in there pretty well except for nightly bouts of insomnia.

    We celebrated my aunt's 80th birthday yesterday with a big party. Life is such a gift!!!!

    Hope everybody is doing well today.

    Rita
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007
    Rita,

    Thanks! I am dealing with the hair loss issue now, and even with a wig and some head covers/bandanas, it is hard to deal with.

    Sorry you are having insomnia, from the Arimidex... I will be following in your footsteps, and am not happy to hear that it causes sleeping problems. I am having trouble sleeping now, too.

    I'll post an update after my treatment on 8/28!!

    Thanks, you are so sweet!

    HARLEY
  • ritajean
    ritajean Member Posts: 4,042
    edited August 2007
    We'll be looking for your update, Harley. You have become a wonderful addition to this thread and I always look forward to your posts. HUGS!!!

    Rita
  • Harley44
    Harley44 Member Posts: 2,126
    edited August 2007


    Rita,

    Awww... Thanks!! Even though I thought I would be getting CMF, I'm not.... but I can't leave this thread and all the wonderful women here!!

    love ya,
    HARLEY

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