Starting Chemo January 6, 2014

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  • stephaniegee
    stephaniegee Member Posts: 81
    edited April 2014

    Hi guys,

    Wanted to share some of my experience. 

    katiegrey - I did my double BMX back in November before chemo. Prior to the surgery I spoke to a few people who had done it before but then decided I heard enough. Everyone has a different experience and I didn't want any other experiences to scare me or put the wrong ideas in my head. The important thing to know is that you will be OK. Be prepared that the first few days will be different than what you've experienced so far but you will be shocked to see how your body recovers and how quickly you will start to feel strong again. The best advice to prepare yourself is to enlist some help for the first few days and let them do things for you. Everything else will fall into place and you will heal :) If you have specific questions you can msg me. 

    RHGSR - You asked about exercise. I wanted to share, after my first AC I began going to pilates and discovered it was the BEST thing for me, it has saved me. I was feeling weak and useless and it gave me strength and confidence. I found a private pilates instructor that is trained in rehabilitation and has had cancer herself. Since January I have been seeing her 1-2 times per week. She is always able to gear the class around my strength that day. Sometimes we just do stretching other times a full workout. It is fantastic, wakes up all of my muscles and puts me back in control. It is a great way to work out while being gentle and kind to your body. The downside is its expensive but so so worth it. Seriously, it's amazing. 

  • birdlover23
    birdlover23 Member Posts: 54
    edited April 2014

    I think I might have the white, fuzzy hair growing back on my head!  I am not totally sure because I never shaved my head, so I have had a few strands here and there all along.  The strands are now falling out since I am done with A/C and am now on Abraxane, but I really think these fuzzies might be new.  Does anyone else have them yet?  Does anyone know how long it takes for real hair to grow once the fuzzies are in?

  • stephaniegee
    stephaniegee Member Posts: 81
    edited April 2014

    I have more than just fuzzes…my hair seems to be growing :)

  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited May 2014

    birdlover23 ~ my hair took about 4 or 5 months to be nice and thick again, after my chemo last year. Very short, but nice and thick. It grows about 1/2" a month. I have naturally very thick curly hair, so maybe that makes a difference, but if you are seeing white fuzz, that is exactly how it starts! yay! I'm looking a bit like a fuzzy duckling myself. Also, I have had to start shaving my legs a couple of times of week again ThumbsDown

    I will also add that after 30 or so years of very long hair, I LOVED having short hair. Loved. I will never grow it long again

    stephaniegee ~ glad to hear your hair is growing too! Where in Canada are you? I'm from Vancouver but living in San Diego. I can't remember if I've asked you that before. Chemo brain is alive and well in my head....



  • carolsue63
    carolsue63 Member Posts: 126
    edited May 2014

    These aren't exactly my favorite pictures, but I'm going to be brave and share them anyway so you can get an idea of how much hair growth to expect. This was from when I did TCH in 2010. I had my last chemo in early July -- the 2nd, I think.  The first picture was taken mid-September (2.5 months PFC), the second picture was Christmas Eve (nearly 6 months PFC).

    image

    image

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited May 2014

    Stephanie and birdlover-I also just started seeing the fuzzies too...if I look reeeeal close. But they are all white. I'm so impatient now that I'm done with chemo...but only 10 days PFC (dd a/c and dd taxol). This whole this has been a test of my patience! Ugh. I'm am feeling good, now just want to look like my old self. Actually miss my curly hair on windy days! 

  • tekwriter
    tekwriter Member Posts: 216
    edited May 2014

    Stephanie, I am doing Taxol and I have them all over and now they are turning dark brown. My hair is black. I don't expect much since I still have 4 Taxol's left.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited May 2014

    finished taxol today, 20 weeks went by fast. Brought fancy cupcakes to the office  for the girls.  Decorated my IV pole for May Day,  got lots of hugs and ran the bell on my way out.  PFC now ( though I use a different F 😈 word for finishing) 

    Barbara 

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited May 2014

    congrats again Barbara, ok so now I see what the flower and streamers were in your other picture, May Day maypole! Nice. And no bell at my facility but thinking of getting one and donating so others have something "noisy" to mark the milestone. Welcome to the PFC club. Now onto rads and discussing hair regrowth. This will be soooo much better than discussing SE's from chemo. 

    Hoping everyone else good days with manageable SE's. 

  • birdlover23
    birdlover23 Member Posts: 54
    edited May 2014

    carolsue - I can't thank you enough for sharing your pictures.  I needed a dose of reality.  I am done on July 2 this year, so I'll be on the same hair "schedule" as you were.  My hair was long, past my shoulders.  I am having a hard time dealing with hair loss in general and how long it will take to get back to a length I am happy with.  I had it cut shorter before chemo to see what kind of hairstyle I would be happy with when it is short.  That was still a good 2-3 inches longer than yours at Christmastime.  I'm already sick of wearing hats and hairpieces.  Sick of everyone knowing my business because I can't hide hair loss.

    And you are brave, not for sharing your beautiful pictures, but for fighting this for the third time.  I hope that once you beat it again that you will never have to deal with cancer again.

    carpe - thanks for the hair info.

    So glad that lots of us seem to at least be getting the fuzzies :)

    Susan

  • carolsue63
    carolsue63 Member Posts: 126
    edited May 2014

    I'm glad you found them helpful Susan. I'd played musical hair lengths so many times, going super short then growing it back out again, I think I may have had an easier time than most about my hair loss just because I'd had so much experience growing it out. It took me 3.5 years to do it, but I grew it back out past shoulder length. Then I had to start chemo again. So before it could fall out, I got it cut super short so I could donate it to Locks of Love. And I loved the short short style I got. That's the style I'm going to when my hair comes back this time. Here are the before and after pictures from that day. (The "after" is with the lovely lady who cut my hair.) :-)

    image

    image

  • carolsue63
    carolsue63 Member Posts: 126
    edited May 2014

    Forgot to mention I'm going for chemo round 6 of 6 today. Woohoooo!  Hoping for peach fuzz by the 4th of July and maybe a halfway decent hair style by Christmas. :-)

  • tekwriter
    tekwriter Member Posts: 216
    edited May 2014

    my hair was long and I cut off 8 inches or more.  I wish I had though to go bold to start and give to locks of love. live and learn.

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited May 2014

    congrats carol sue! Happy dance! You look great with short hair

  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited May 2014

    carolsue ~ your short hair looks amazing! It's sassy and hip and really flatters your face.

    I see you are Stage IV too. Congrats on the last chemo, mine was March 12. I'm growing my hair back for the second time :)

  • birdlover23
    birdlover23 Member Posts: 54
    edited May 2014

    Congratulations carolsue - woo hoo!!!  I really like the short hair :)  It really looks great on you!  So nice to know that you won't have to wait as long to get that great cut!

  • carolsue63
    carolsue63 Member Posts: 126
    edited May 2014

    Thanks everybody, Got home a little while ago and trying to rest up. Our county Relay for Life is tonight, and I really want to go. We have so many friends heavily involved in the event. Our former neighbor who also happened to be my son's elementary school PE teacher chairs the event every year, so they get a lot of participation out of our schools. My BC support group signed up as a group and we're planning to meet for the survivor dinner and walk the survivor lap together. My church will have a tent there, and I almost always see a group from my radiation oncologist's office there. It's like a great big reunion and my son has a blast running around with his friends. I really really hope I'll feel good enough to go.

  • Marren
    Marren Member Posts: 59
    edited May 2014

    carolsue- Yay congrats on your last round!

    And to everyone else who completed chemo. I can't wait! My last round is 5/12. 

    I can't remember the last time I posted because I can't remember much these days, ha!

    I saw a radiation oncologist and a plastic surgeon the last few days. I'm gathering info and still deciding on a lumpectomy w rads or mastectomy and well possible rads. I'm leaning towards mastectomy. I'm considered young 38 and they said reoccurrence is more likely, and of course I'm terrified of reoccurrence. Well everyone is, I just know it will cause me great anxiety. I'm in chemo and I still question lumps and bumps. 

    Anyhow I hope you all are well.

    -m

  • carolsue63
    carolsue63 Member Posts: 126
    edited May 2014

    good luck with your upcoming decisions Marren. It's a lot to think about.

  • katiegrey
    katiegrey Member Posts: 79
    edited May 2014

    Carolsue - I also love your hair short - really looks cute on you! 

    I finished my last DD Taxol on 4/28, and was doing neoadjuvant chemo so my surgery (BMX with TEs) is scheduled for May 15. So happy to get the chemo part over with, but still no fuzzy hairs to speak of!

    If anyone else was doing chemo first, we've got a May surgery board going, so please join us!

  • Marren
    Marren Member Posts: 59
    edited May 2014

    Katie-congrats on finishing chemo! 

    My bs  said they'd give me 4 weeks off after chemo before surgery. So I'll prob have surgery in June. But I'll def check out the May board. 

  • tekwriter
    tekwriter Member Posts: 216
    edited May 2014

    I am the same way.  I finish in may but get three weeks off, so probably June.

  • Wipa
    Wipa Member Posts: 9
    edited May 2014

    looks like I'm on the June schedule as well.   Haven't posted in a while, just finished #7 taxol, has been great compared to the AC.  Main complaints are constipation(trying senna tabs at night) and nail pain.  I will gladly put up with these though!

    I finish taxol 6/5 and then will have bilateral mast. Followed by radiation.   I meet with the plastic surgeon on Tuesday to get a timeline for the surgery and expanders, etc.    Glad everyone is starting to think about the end of chemo, it's nice to have something to look forward to.  

  • chipmunk57
    chipmunk57 Member Posts: 58
    edited May 2014

    Last chemo tomorrow! Can't wait to start feeling better .

  • SmartassSmurf
    SmartassSmurf Member Posts: 157
    edited May 2014

    Glad to hear so many of you are moving along through this journey.

    I have had some setbacks again. My husband had his gallbladder removed & a hernia repaired a little over a week ago. I caught a cold/flu from taking him to surgery.  So, I had my first ER trip & three days of fluids...no chemo last week, my blood was too depleted by illness.  We are both frustrated because we have been so careful & thought this would be ok since our help had to cancel due to the flu.

    There is a Race for the Cure Team that is walking for me on Mother's Day, but now I cannot go because of germs & exertion. I am bummed about that. I just want this chemo trip to end...8 more weeks.

  • Asb
    Asb Member Posts: 99
    edited May 2014

    Hello ladies,

    I haven't posted for a while. I had BMX April 21, after only 4 rounds of TCH/P because the tumor did not seem to be shrinking. I got the pathology back last week and found out that the tumor did not respond at all to the chemo.  The ultrasound and MRI originally showed the tumor to be just at 2 cm, when they removed it it was 3.5 cm. Cant be sure if the imaging was off or if the damn thing was still growing through the chemo. The good news is they got it all, and still no node involvement but it does mean I now have to start over with chemo. This time I will be getting AC.  I think I am still in shock that I spent 4 months paying thousands of dollars to have poison injected into me and it did nothing. I have been off chemo since mid march and my hair has really started to grow. I am sure it will all fall out again when I start back on chemo. This is not the way I wanted to spend my summer. 

  • birdlover23
    birdlover23 Member Posts: 54
    edited May 2014

    Oh, Asb, I am so sorry to hear this.  I've been wondering how you have been doing with your recovery.  I had BMX in December.  It is very good news that your nodes are clear and that they got it all.  Try to focus on that.  Also that your chemo got stopped and the tumor was removed, instead of waiting until you finished the chemo, especially since it was not working.

    My chemo goes until July 2, so I'll be getting it part of the summer with you.  Sending you lots of healing thoughts.

  • desimone
    desimone Member Posts: 40
    edited May 2014

    Just completed # 6 taxol - 6 more to go! So far so good.  But SE could happen at any time. 

  • carolsue63
    carolsue63 Member Posts: 126
    edited May 2014

    Asb -- I can't imagine how upsetting it must have been to learn that the chemo wasn't shrinking the tumor. I'm so glad they were able to remove it all surgically. Wishing you well on your next treatment. On a side note, my husband is from Concord. :-)

    Desimone -- congrats on reaching the halfway point! Hope your side effects stay manageable.

  • Sam2U
    Sam2U Member Posts: 233
    edited May 2014

    Asb I can't imagine the frustration---at least there were clear margins and no node involvement--I'll be hanging with you for another month, then on to rads through August.  I wouldn't put too much stock in the difference in the u/s and MRI vs pathology.  My u/s read by radiologist 1 showed one tumor 3mm.  MRI read by radiologist 2 at a different hospital showed 2 tumors one small and one 2.4 cm.  The reality?  one big tumor 9.4 cm.  

    I got caught in some nurse drama today at my infusion and I am wondering if any of you ladies taking weekly taxol would give me an idea of how long the infusion takes from your appointment time to walking out the door?  TIA

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