Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

CMF Question

1…215216218220221…282

Comments

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    Meeting the inspector at the house at 9 AM next Monday. I hope this works out. Househunting is really tiring!

  • smva
    smva Member Posts: 24
    edited October 2012

    Hi everyone, it's been awhile since I've posted. Hope you're all doing well. I am 4 months post chemo and feeling good. Still waiting for hair to feel normal again, if it ever will. It's very fine and lifeless. But if that's my only issue, I'm happy. Just remember, there is a light at the end of the tunnel.



    @ritajean, where do you rent in FL? Many places want 3 months minimum and that's too long for me. Would like only 1 or 2 months at most.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited October 2012

    Starting regimen #6 today. Done in 14 days Cool. I am so sick of it !!!!! I have to talk to the MO about bone pain in my left hand. My fingers hurt to do anything. I am hoping it is just a side effect from the dam chemo. Anyone else have this?

  • colleen1960
    colleen1960 Member Posts: 107
    edited October 2012

    I have not been on this board in a very long time, but today I just wanted to let you know I am now a four year breast cancer survior.  When going through treatment you think that you don't know if you can get through this.  But I wanted to let everyone going through treatment now that you can get through it.  You just need a real good positive attitude and surround yourself with positive people and you will also get through this.  This board and all the kind women here helped me in so many ways.  

    So thank you to all those women!!!  For all those going through treatment stay strong, be positive and before you know it you will be looking ahead to a great cancer free life.

    Hugs to all,

    Colleen

  • ritajean
    ritajean Member Posts: 4,042
    edited October 2012

    smva...We have rented a house for the first time this year in Cape Coral for one month....February.  Always before we rented a condo right on the Gulf in Fort Myers Beach.  It's pretty hectic on the beach and we're interested in looking at property to buy on the Cape so we decided we'd rent there first this year and be sure that we liked it.

    Colleen...so glad to hear from you again!  Congrats on the 4 years!  Thanks for coming back and sharing your good news.  I have thought about you several times and wondered how you were doing.  It's always great to hear such wonderful news!

    Dianarose....almost there, almost there!

    Hugs to all of you.

  • mandy1313
    mandy1313 Member Posts: 978
    edited October 2012

    Colleen: so nice to hear from you and congrats on your 4 year anniversary!

    Hugs,

    Mandy

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    @colleen1960,

    congratulations on your 4 year anniversary! >>>happy dance<<<

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    @Dianarose, Hang in there, you are almost done! (((hug)))

    I haven't had bone pain. I hope yours goes away fast when you finish this last round.

  • mandy1313
    mandy1313 Member Posts: 978
    edited October 2012

    I don't think I will ever get over the fear. I went for my mammo yesterday. In the waiting room, I was a basket case--thoroughly stressed out and near tears. But I got good news...a clean mammo!  This is 4 1/2  years after my diagnosis so I am blessed.  Now I can get ready for the storm that may or may not hit my area. But I live across the street from a river so flooding is always a possiblity.

    Have a nice weekend! 
    Hugs

    Mandy

  • Dianarose
    Dianarose Member Posts: 1,951
    edited October 2012

    Well, they canceled my infusion for tomorrow due to the Hurricane. I wanted to cry. It is the last one and I wanted to just get it over with. I will go Wednesday instead as long as there is power around here. I work on the coast and came home early as the tide was coming in and the water was higher than I have ever seen it. It had started to get windy too.

    I want to ask about the whole hair thing to those who lost their hair or had severe thinning during CMF. What I have left is about 25% and it is gross. Doesnt' even feel like hair, more like bad wire. Did anyone else experience this and will it come back to normal or will I just have to cut it off? Also how long was it before you noticed new growth. I don't get any when I have the 2 weeks off in between. I just want to be me again.  

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    @Dianarose, I am sorry to hear your infusion got canceled. What a bummer, especially since this is the last one! (((hug))). To answer your hair question, I have not had severe thinning (yet), but I think once a hair is formed, it can't be changed. Shampoos and conditioners can clean the hair and perhaps keep it from getting any more damaged than it already is, but I don't think they can change it in any essential way. I think it is like a perm or dyeing your hair--once you do it, you can't undo, only wait until new hair starts to grow in and then cut off the damaged ends.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited October 2012

    curveball- are you getting the Cytoxan in pill form or IV? I take 3 pills for 14 days. I started losing my hair week 3 so if you haven't had that issue yet you probably won't. I just want it to grow back. I don't even care what color it is at this point. I think once it is thicker I will have it cut short and just start over. I am hoping by the time I have my exchange I will have hair too.

    How have you been feeling? Any bad side effects. I lost my nose hairs so I seem to smell everything better than before. The one thing that is gross is the smell of my urine. It must be the chemo expelling. Have you lost your taste? I can't taste much unless it is really sweet or salty. What about weight gain? I went from 124 to 132. I was not happy. Last week I was back down to 126. I feel good at about 122 to 124, but no more. I don't want my belly to be sticking out more than my girls. Cool

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    @Dianarose, I take two cytoxan pills every day and get the M & 5FU by infusion once a week. I didn't really notice much thinning until two months or so into the treatment. I have been feeling OK, except I get tired much more easily than I would have before treatment. That side effect took 6 weeks to two months to show up too. The first month I just felt a little "iffy" the day of the infusion and pretty normal the rest of the time. I haven't noticed any change to my sense of taste or smell.

    I'm not sure if I have gained any weight or not. I get weighed when I have my onc appointments, but sometimes I've had shoes on and sometimes off, which I think would make as much difference in my weight as I have seen during treatment--it has fluctuated by a pound or two. But I wouldn't mind gaining a few pounds anyway. Right before I was diagnosed, I weighed 129 lbs. Over the next month, between worry over diagnosis and a nasty stomach flu (I ate hardly anything for 3 days) I went down to 123-1/2. That was how much I weighed when the first PS I spoke with about reconstruction told me I was too skinny for any flap surgery. Then, based on path report, my MX removed about three-fourths of a pound. So I could gain some weight and not worry about it at all. It would just mean I have a better donor site for DIEP--the second PS I consulted said I did have enough donor tissue even as thin as I was at that time, but I think a little more wouldn't do any harm, and gaining 5 or 6 pounds would simply return me to my weight of a year ago. How tall are you? I'm five-foot-seven, and for me, 122 lbs would be verging on too thin. I've seen photos of me at 118 lbs and I looked gaunt and unhealthy. But maybe I am a little taller than you are.

    When is your exchange? I don't know how soon hair starts growing back after chemo, but I hope you have some nice new growth coming in by that time.

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2012

    The hair that remained on my head was deadish...it took a while for it to all grow back. then for me it came back straighter than before ..then after a while it all turned out but thinner...one little hank of hair wants to stick straight out..I use spray gel on it...

  • Dianarose
    Dianarose Member Posts: 1,951
    edited October 2012

    Curveball- I have to have radiation starting in December so I won't be able to get my exchange until that is all healed. It's a long process. I am having the ovaries out at the same time. I am a one stop shopper. I am 5'4" but I have tiny bones and when I gain weight it is in the belly. I am all set with that.

    SocalLisa- My remaining hair is really deadish too. I spiked it up the other night with some hair spray and my 13 yr old told me to fix it and that it was scaring him. I hope my curls come back. It took me my whole life to figure out how to manage it and then it was gone.

    Last infusion tomorrow and last of the Cytoxan pills on Monday. I still can't believe I have been doing this since May. Sick and tired of being sick and tired. Hopefully rads will go by quick.

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2012

    Dianarose, I know exactly that feeling..the end of CMF is near!

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    tough times in the infusion suite today. They had to stick me four times to get the IV in. Yuk! I had two blood draws for my onc appointment Monday (My white count was down Friday. Nurse suspected it was just because I had blood drawn sooner after tx than usual & if I had the blood count re-done Monday the count would probably have recovered enough for me to have my treatment this week, and she was right.) Between treatment last week (took three tries to insert IV), the blood draws for labs, and treatment today, I've had my arm stuck nine times in the last seven days. I've got ten more treatments left after today's and really don't want to face being stuck three or four times a week. My onc told me at the beginning of chemo that most people who do CMF have a port, so after today's session I requested one. I don't have an appointment to have it put in yet. They say they can do it the same day as a chemo treatment. They use conscious sedation, so I guess that means I can't drive myself that day. Did anyone else on this thread have a port, and how was it?

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited October 2012

    Thanks dianarose.  I couldn't believe it was not effective if Memorial Sloan Kettering used it so much.  

    I feel my strength returning now.   I just realized today that I haven't been thinking "can I do this?"  I just do it  It's now seven months since the last infusion.

    My hands aren't tingling as I type this!  It's funny how you notice these things when they happen but not when they stop happening.  I'm trying to notice the good things.

    I never had any trouble with taste buds.  Even hot flashes weren't a big issue.

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited October 2012

    Were you given any explanation as to why your oncoscore was so low yet so many lymph nodes had it?

    My oncoscore was 14 and I had it in one node.  At least they found a micromet in one node.  Most of my nodes are still in me since they didn't find the micro met on the operating table.  

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited October 2012

    I gained 50 pounds since last year!

  • Dianarose
    Dianarose Member Posts: 1,951
    edited October 2012

    Curveball- My PS prescribe a cream to apply prior to the infusions. It numbs me clear to my elbow. I love this stuff. I didn't want a port. I never feel them put the IV in. It is Lidocaine 2.5% and Prilocaine 2.5%. Also if you have them put a hot cloth on the vein for 5 minutes prior to them sticking you it expands the vein. I would give this a try before I had a port put in. Just put a big blob on the vein and wrap it with saran wrap one hour before the infusion. I take it off in the car before I go in.

    Timbuktu- No explaination of why such a low onco score other than the cancer was highly ER+ and grade 2. The doc's believe the cancer has been there for yrs, just undetected. Just glad I had lazy cancer. I have terrible hot flashes. Sometimes 25-30 in a 24 hour period. I hate them. My joints in my fingers and toes really hurt too. I don't sleep well even with the xanax. The tissue expanders are like rocks and hard to sleep with.

    Well off to the last infusion. I hope everyone has a great day.

    My friend, who I met on this forum lives close to the Jersey Shore and I haven't been able to get a hold of her. I am so worried after I saw what the area looked like on the news yesterday.

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    @Dianarose, the infusion nurse did wrap my arm in a warm towel this week and last, and in spite of that, it took multiple tries to get the IV in. It didn't hurt all that much but I hated the feeling of having the nurse poking around trying to get it in, and my poor arm really looks like it has been in the wars, multiple black & blue marks up and down and in my elbow from leaking after being stuck. I asked the nurse if the chemo drugs can affect the veins and she said it can cause them to get tough and fibrous. I think that is what has happened, because up until last week, the IV went in on the first try except once and that only took two tries.

    Why did you not want to have a port?

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2012

    I did not have a port, but we had a wonderful chemo nurse...she was from the Phillipines where she says they train differently for this..so I always asked for a Fillipina nurse..and they always got it on the first try..

  • Dianarose
    Dianarose Member Posts: 1,951
    edited October 2012

    Curveball- I didn't want a port because it was another surgery and my step mother had one and it left a really bad scar. I get my IV's in the arm. I don't like them in my hand.  They always have issues if they try to put it in my hand.

    DONE WITH INFUSIONS. YA HOO !!!!!

  • ritajean
    ritajean Member Posts: 4,042
    edited October 2012

    Yea DianaRose...........You're an infusion GRAD!  Done!  Finished!  I'm doing the happy dance for you!  Take it easy for a few days. Even though you are finished with the infusions, the chemicals from this last one are still in your body and might cause a few side effects if you overdo.

    Curveball...I didn''t have a port either.  Like Lisa, I quickly learned the onc nurses that could get my IV in with one stick and I always asked for them. 

    Hi Timbuktu....glad to hear that you're beginning to feel more like your "old self!"  It does take some time to get back to where we were before all the treatments and the stress!  Please keep in contact and give us updates!

    Hugs to all of you!

  • curveball
    curveball Member Posts: 1,583
    edited October 2012

    @Dianarose,

    You are done!! >>>>happy dance<<<< for you!

    I don't get the IV in my hand, it has always been put in between wrist and elbow. I have lots of very visible veins, it's just the last two weeks the needle has not wanted to go in. At this point I think I would rather have a scar (if that happens) than get stuck so many times. I don't think it is a matter of which nurse. The one who couldn't get it in this week with 3 tries was the same one called after the first nurse failed twice last week, and at that time she got it in first try.

    I still have not gotten a call for the port installation. If the nurse next week gets the needle in on the first try maybe I will cancel. I already have a scar on one side of my neck from having a lymph node abcess drained years ago. The surgeon put the incision along an existing crease, and it doesn't show much. And the collarbone scar, if I get one, will almost always be inside my clothes so I don't care about that either.

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2012

    Remember to keep very hydrated so the veins are easier to hit..lots and lots of water CMF requires it too!!

  • socallisa
    socallisa Member Posts: 10,184
    edited October 2012

    Oh, also when they draw blood request a butterfly needle, they are smaller

  • Dianarose
    Dianarose Member Posts: 1,951
    edited November 2012

    All my blood counts were normal today except my red was slightly low, but my liver counts were back to normal which was a great relief as they have been so high.

    Curveball- There was one nurse I had and after one time I told them I refused to have her again. She totally sucked at the IV and pushed both chemo's through in 2 minutes or less. I was so sick after that. The nurse I had after said they are trained to do it slow incase you do have a reaction and to hydrate you between each push. Sounds weird but after her I had 2 different male nurses and they were the best. Joked around with you and got the IV's in the first time. I think some just don't like their jobs or they are burnt out.

    SoCalLisa-The butterfly needle is a great idea. I have been getting a very thin picc line each time. I actually watched him take it out today and then wished I hadn't. I don't do well with that stuff.

    MO said hopefully in a month or so I will start to see my hair growing back. That will be the best Christmas gift ever.

  • socallisa
    socallisa Member Posts: 10,184
    edited November 2012

    Boy Diana, you had cause to complain...I also told the nurses to slow down the M and F infusions

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.