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CMF Question

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Comments

  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    I guess I didn't say that the right way... I have had lots of choices, but it really doesn't feel that way. My surgeon told me "get the bi-lateral mast.", so I did... I didn't think I had a choice. But, the onc. never gave me a definitive answer. So, I saw the second opinion onc. and he just told me to do that oncotype test, so I did... But, my surgeon is very upset that I am thinking of NOT doing the chemo, and he basically just lectured me on Friday about how important this step is (chemo) and how he had MANY women who didn't have positive lymph nodes, and they had mets. later, so... In this way, I really feel that I have no choice about anything... first the nipple, which seemed like a small enough thing, but now...

    BTW, the nipple is not small, once they put it on my leg, it 'morphed' into a HUGE ugly looking thing!
    It kind of looks like a mole! But, at first, it changed color EVERY DAY! It's disgusting! I will have to ask about whether it is going to be safe to use it, but my PS said that they would biopsy it, to be sure there was no cancer, since it was from the 'good' breast. I never thought about maybe having problems later on down the road.

    Tennis was always a fun sport for me!
    HARLEY
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Hi gals,

    Welcome to the CMF thread, Harley! Although nobody really wants to be here, it is a good place to get questions answered and meet others who have "been there and done that." Glad that you found us and that Melanie was there to greet you and give you such good advice.

    I have finished #5. This is day 5 so I woke up feeling pretty good today. I had a few yucky days but nothing that couldn't be handled. I hope today is the turning point and I'll have a few good weeks because my family is coming in on Friday and I will have my two little grandsons for a couple of days while my son and daughter-in-law house hunt in Kentucky. I'm looking forward to that because I don't get to see them very often and of course I love to spoil them. So...............I need to feel good to get that job accomplished.

    Harley, I know that they tell you to stay out of the sun while doing CMF but I still go out. I play golf and I've just lathered up with sunscreen and gone anyway. I think the main concern is that you have a tendency to burn more easily. I have not seen any other complications from the sun, so you could probably do it in moderation.

    Well, I'm off to try to get some laundry done. Also have some gifts to wrap and other things to get accomplished. Hope you are all doing well today! The sun is starting to peek through the trees in Illinois and I think it's going to be a wonderful day!

    Rita
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Hi Rita,

    Thanks for the warm welcome, and the advice!

    I am just SO afraid of the chemo, and the possible permanent health problems from it. My surgeon called them Side Effects, but honestly, if it's PERMANENT, it's NOT a side effect...

    Well, I'm meeting with my new onc on July 24th, and I guess I'll get the Oncotype test results then...

    Hope you have fun with your grandsons!

    HARLEY
  • dash
    dash Member Posts: 173
    edited July 2007
    Hi CMF gals,
    I have taken a loong break from the boards and my computer in general---spending my free time gardening, walking, swimming,etc...
    Unfortunately, chemo caused me so many problems and I am in the midst of dealing with them all. It looks like I am in menopause and that has caused heart problems that they hope are temporary as my body adjusts to the sudden lack in estrogen. I have been dealing with high blood pressure(from the steroids), chest pain and flutterings,high liver enzymes, an enlarged liver and high blood sugar since I ended chemo. My reconstruction surgery was cancelled because of all the health problems.
    I have been hoping to come back to the boards full of good news and I'm sorry if it all sounds discouraging. Problems can occur, though, and it's better to be aware of it.
    The good news---Everyone says I look healthy and would never know I was on any chemo. The Deborah cardio doctor thinks I should only need to be on Beta blockers temporarily. He said my body is sending out panic chemicals about the sudden lack of estrogen and my heart being washed in these chemicals is stressing it.
    I'll try to stop in more frequently to update everyone. Hope all my cmf sisters are doing well. Please send a prayer for me that my body will get back to normal very soon.
    HUgs, Holly
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Oh Holly! (((HUGS))))

    I have thought of you often lately and wondered how you've been doing. I am so sorry to hear about all your problems. I will send prayers and good vibes your way. PLEASE...PLEASE keep us informed. We are all still here for you.

    Rita
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Hi Harley, glad you found us here--very supportive place! Just to add...I got a port for CMF chemo and I am sooo thankful that I did. The blood draws and chemo were a breeze, compared to what I saw many others go through. Chemo can do a number on your veins. If you have any questions about this, please let me know.
    Side effects can be monitored and taken care of (speak up if you have any!). Everyone is different. Some people have relatively minor problems. My biggest permanent side effect appears to be early menapause (although my doctor said I could still get my period---slim chance, but would be in the next 3-6months) I figure I will have to go into menaupause anyway, so just get through the hot flashes.. Fatigue is another, but more so from radiation. This is temporary. So many people move forward and live healthy lives---I plan to! All the best with your decisions (they are the toughest part of the journey, I feel anyway).

    Oh Rita, so sorry to hear your chemo day was so difficult YOu are almost going to be on your "chemo holiday", one more and then YOU ARE FINISHED!!!!

    Welcome back Holly. Sorry to hear you have had a rough time of it in recovery. I am sending my prayers too that everything will resolve soon and you will be feeling better! One day at a time

    LR, hope you are doing well...and everyone else that comes here.

    I am past the half way mark of radiation and my doctor says it looks like I should get through pretty well. Still just a little pink---no pain or discomfort at all Just T I R E D !! Anyway, this too shall pass!

    Hugs and prayers,
    Ginny
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    P.S. Holly, isn't it funny that, probably because we kept half our hair, most people think we look "soo goood" after doing chemo? I get that too and on one hand, it is great and am thankful for keeping some hair, on the other hand it is a little weird because people just don't realize that we have been through the ringer. Loosing all of your hair would be really tough, but people don't expect you to be normal energy... expectations are higher...? Just some musings. I hope you are taking time to rest. Please don't feel you have to just share good stuff here Holly. We are here for support---this ain't an easy ride !
  • dash
    dash Member Posts: 173
    edited July 2007
    Hey Ginny and Rita,
    So glad to reconnect. You're right Ginny, the expectations are pretty high. Everyone around me has been saying how they think I'll bounce back quickly--and I have been trying very hard to.
    I can't start the tamox until my liver enzymes go down. I have to carry nitroglycerin for my heart. U/S shows enlarged liver, recommend an MRI. Today, receiving a call saying I might now be diabetic was the last straw. Scary stuff.
    But I feel a bit better since some ladies in another thread told me they had similar stuff after chemo too and eventually got through it.
    I know I can share unhappy news here but I really didn't want to worry anyone going thru it right now. But thanks for the reminder!
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    hi Ginny,

    I am so SCARED about chemo! No matter which formula we choose, I am dreading it! Is CMF the one that can cause leukemia? I am SO afraid of leukemia!!

    Thanks,
    HARLEY
  • b445
    b445 Member Posts: 980
    edited July 2007
    Harley, I know you're scared we all were and are. so you are not alone! These gals are great on this board and will walk right beside you.

    Holly,
    I'm so sorry this has cause you so many problems. looks like you got the worst of it of any of us.

    Ginny & Rita hope you are doing well. I'm hanging in there and have side effects that are making me really tired and make my feet and hands hurt. I'm still working full time and will be headed to New York to attend Pickstock in just a couple of weeks, where i will get to meet a bunch of the ladies from the boards. I can hardley wait. I could use a vacation from work!

    I'm enjoying the grandkids and trying to get as much rest as I can between all the other stuff.

    I can't get on often as I use to because the computer gets too hot but will try to stay in touch.

    Hugs & Prayers to all
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Hi everybody,
    I am sorry to hear about your difficulties. My prayers are with you all.
    No, Harley, CMF is not the one that can raise your rish of leukemia.
    We can do this!!!! We owe it to ourselves and our families!!!! We are lucky to have this as an option!!!!!
    Ginny, I feel JUST like you do about the hair thing.
    SMILES all, we are in this together!!!!
    -Melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    Thanks for the info. about CMF and leukemia... My hair is also very thin, due to a thyroid disorder, so I may be the only one who loses all their hair to CMF!

    I will meet with the new onc on July 24th to find out the results of the Oncotype DX test. I'm praying for a REALLY low number! Wish me luck!

    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Harley, Do you have to wait until your meeting with the doctor to get your results? Can't they just give you the numbre over the phone and then you can discuss when you go in? That's what I did.
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    Well, I called today, and left a message. It's really hard to get to talk to someone at my onc's office! My dr's nurse called me back, though, and they haven't gotten the results yet. She said it could take about 2 weeks, since the lab is in California and I'm in NC! Let's see... I saw the onc. on July 6th, and I think they ordered the test on July 9th or 10th, so we should be getting the results any day now. I wonder if I should call again later in the week, or just wait for my appt. on the 24th? It would give me more time to think it over.

    My friends and family don't understand why it's taking me so long to make up my mind about chemo. I wonder if they could put theirself in my place, and see how they would feel?

    Thanks!
    HARLEY
  • candie1971
    candie1971 Member Posts: 2,467
    edited July 2007
    Hi girls,
    I am a former CMF'er. As a matter of fact, 1 year ago tomorrow was my first treatment. Thought I would come in (as I do from time to time) to offer my positive thoughts, prayers ane encouragement to all of you. I read some of your posts and you are very true to one another. That's how it was last year with the group I was going thru it with was. Well, one year later and I am feeling good. My hair looks beautiful, I have so much energy back and wow--what a difference a year makes. You will all be fine--this is all doable.
    i know some of you have been talking about having a mastectomy as a precaution. I had a lumpectomy last year, and I think about it alot--maybe I should have a prophylactic bilateral as I have dense breasts too.

    Harley--don't freak yourself out. I was sooo scared too. You have a great support system here--u will get thru it just with the help u get here.

    I will keep in touch with all of you.

    Hugs and prayers,
    Candie
  • SCMartin
    SCMartin Member Posts: 112
    edited July 2007
    Hello CMF girls, Candie and I must have been checking in at the sane time. We went through this together a year ago. Candie, it was so nice to read your post and know that you are doing so well. Congrats to both of us on our year anniversary.
    To all the girls going through this now- you will be where we are and you will do fine. It is so hard to believe that we were going through everything last summer. On July 1 it was a year since my lumpectomy followed by 8 rounds of CMF and 30 rads. I am on Arimidex now and except for manageable aches, I am just fine. Please, hang in there and keep supporting each other as I see you do so well. Soon, this will be a memory and you do move on. It never really leaves you mind completely but life goes back to normal. Next month I will be the speaker at our Rally For A Cure golf event and will speak to over 100 men and women. Last year at this time I never would have believed I would be doing this.
    The chemo effects go away, the radiation skin clears and things go on as before. I still worry but am not obsessed.
    I think of all of you and pray for you and check in on these boards. They were a great source of comfort for me.Lots of hugs and love. Susan
    By the way, it took some time but my liver enzymes went back to normal as well as glucose and every other blood value.
  • b445
    b445 Member Posts: 980
    edited July 2007

    Hey it's good to see all the old timers here! See what'd I tell you this site is a good place to be for support. and yes we do check in to see how all the new gals are doing.

  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Wow, hi to you Candy and Susan. So nice to hear from you again. Congratulations on being one year out and doing well! Great encouragement. It is nice to know that one day we will have our energy and hair back!

    Harley, I found making the decision to do chemo extremly difficult. No one can understand how hard this is, unless they are in the same position!!! I was terrified of chemo, beyond terrified really. But I became more terrified of not beating this cancer or preventing a recurrenc more (but that was my situation, yours could be totally different). So with the help of God, my husband, my mom and of course all of the wonderful ladies on this board, I decided to go for it. Looking back, yes it was challenging, but you just take one day at a time, and you can get through it. I appreciated the "chemo holiday" (the 2-3 weeks in between chemo when you feel like yourself again) and just took what ever meds that could help. I have now been finished for 2 months, and I have no regrets. If I could get through it (and still had fun times and lived life), so can you Follow your gut on this. (((hugs)))

    I hope Rita and Cathy are hangin in there!

    Holly, I think it will take some time for our bodies to rebound. I just got a bladder infection (with fever...), then a cold sore on my lip...so I'm pretty sure my white blood cells are still low. Just had a blood test to see. I did become neutrapenic towards the end, so maybe it will take some time for them to build up. I was suprised, because radiation is going pretty well. I think it will take more than a few months for our systems to rebuild and fortify. Hang in there, our bodies will do there jobs with proper time. I know, you just want it to be over and back to normal life...I think it takes time. Just think next year we can be writing how our hair is beautiful again and we feel great, to encourage others. That time is coming...:)

    Well, I'm off to radiation again today. Missed yesterday, because I had to see my GP re: fever and infection. But the fever did not return, so I'm back on the "beam", or should I say "under it" (hee hee).

    We will, we are getting through this challenge, and we will only be stronger in body,mind and spirit because of it!
    ((hugs)) and prayers,
    Ginny
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Ginny,

    Thanks! I sure hope everything goes well, whatever decision I make... I feel kind of like you, I'm terrified of chemo, but I'm petrified about possible recurrence!

    I guess the Oncotype test may help with the decision.

    God has helped me through this so far.

    God Bless,
    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Harley and all,
    I spoke with my friend who is a very well respected cardiologist and he said that if you were a basically healthy person before CMF, afterwards your body will rebound as if it never happened.
    This was very comforting to me in my decision making.
    -melanie
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007
    Melanie,

    Thanks for that information! It DOES help make me feel better! It is very good to hear!

    HARLEY
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Rita, how are you doing?

    Melanie, not to scare you with my other post. I am doing really well post chemo. Had a short lived bladder infection, canker sore...my blood counts turned out to be good, so probably just one of those things we all get. Really the biggest long term side effect for me has been menaupause, and that status could still change (Ihave been feeling a little PMSy lately...haven't had that in 5months!) I'm doing rads now, and I feel that is making me more tired than chemo. But the way I figure it, these treatments are all insurance policies, short term for long term gain. Hope all goes well and you find peace with whatever decision you make.

    Hi to LR, Cathy, Melanie, Holly...Enjoy the weekend!

    Ginny
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Funny thing is I have had 3 periods during chemo.
    Damn, chemo AND cramps, not really fair.
    melanie
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Melanie, I had 3 periods as well and then they stopped. Closer to 40, higher % of going into menaupause with CMF, do to the length of the treatment... I'm not sure of your age, you look a lot younger than me (I'm 45) so maybe you won't go there. Anyway, I hope you are doing alright.
    Ginny
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    well, you are sweet to say that i look young, I turned 43 in March.
    Perhaps I have had my last one, let's see.
    -Melanie
  • ritajean
    ritajean Member Posts: 4,042
    edited July 2007
    Hi girls!

    I haven't been on much this past week as I've been babysitting my two grandsons while my son and his wife house hunt in Lexington, KY where he is being promoted. The little guys are 3 years and 18 months and I'm dead tired at the end of the day.

    As far as the chemo effects, I had one very bad day and 3 iffy ones. Then the effects tapered off and I've been doing fine this week. (which is a good thing!!!) My last chemo will be August 2nd. I really dread it but will be glad to have it over and behind me.

    Ginny..The long drive to rads is probably causing some of your fatigue. I'm assuming that you're not burning too badly????

    CY...Hang in there! It's always good to hear from you.

    Candie and Susan...Thanks for your continued support and encouragement! We need you!!!

    Well gals, I hope everyone is getting through their treatments as well as possible. Funny thing...my hair had started to come back in a little fuller. Since this last treatment, I've started to shed again. Hope I don't lose too much more.

    Catch you all later. This grandma is beat!!!

    Rita
  • 3ofus
    3ofus Member Posts: 201
    edited July 2007
    Rita, you are amazing. Taking care of grandkids, during your last chemos! August 2nd is almost here!!!

    Looking forward to being done too. Actually my last day is July 31. So I have 3 more rads to go!! My skin is holding up well, just a tan. Definitely feeling the fatigue though. Anyway I know my body needs rest to heal well, so I have slowed down considerably. It is just a temporary time for increased good health for the future!
    Looking forward to our trip to Greece. We are going towards the end of August.

    Hope Cathy, Melanie, Harley, Holly,...are all doing well

    Take care,
    Ginny
  • Harley44
    Harley44 Member Posts: 2,126
    edited July 2007

    Ginny,

    I know you are looking forward to July 31st! It's coming right up! YIPEE!

    Have a wonderful time in Greece, the end of August!!


    Thanks for keeping me in mind,
    Take care,
    HARLEY
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Ginny, enjoy Greece!!!
    Rita, Wow, just Wow!
    Harley, Have you received your Oncotype yet?
    -Melanie
  • Galigirl31
    Galigirl31 Member Posts: 103
    edited July 2007
    Well, headaches and cramps. I now officially have my 4th chemo period...lucky me

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