Starting Chemo February 2015

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  • Darumama
    Darumama Member Posts: 135
    edited June 2015

    I am finally feeling a little more normal 11 days pfc. I'm so excited that this Friday (my old chemo day) I will not have to jump on that roller coaster again!

    My eyes have been a little off since chemo began. I'm 46 and had been starting to have trouble with reading prior to chemo so it's hard to tell what's treatment related and what's normal aging. I've definitely noticed more occasional blurriness and more floaters in my eyes. Not going to bother with any new glasses until I'm sure I'm back to a baseline.

    I had the conversation about swapping out the TEs with my MO several times. He was of the mind that it should happen prior to radiation. He was overruled by PS and RO though, so I'm doing radiation first. Either way there is plenty of potential for "issues" to arrise. My PS told me that about 50% of people have trouble with TE from radiation, the RO told me that in his experience it has been more like 10%. The truth is probably in the middle somewhere. I was overfilled on my radiation side by 100 cc. The PS said not to fret about the size difference and that I'd be surprised how much the radiation side is going to shrink/contract.

    I just read this new overview of implant reconstruction on another part of this site. I thought it was pretty informative and learned some new things: http://community.breastcancer.org/blog/breast-reco...

    Today I had my radiation simulation and got my teeny tiny tattoos. I start rads on Monday. Hoping it's not as tiring as chemo. I have to be able to keep up with my kids during summer vacation. I don't want to wish the summer away, but once rads are over our family is hitting the road for a 17 day vacation in Maine. I can't wait, but in the back of my mind I am so afraid that somehow BC is going to sneak up and spoil it. How are you ladies celebrating the end of treatments?

    For all of you still doing treatments or dealing with SE hang in there! We will get through this.

  • Ewt717
    Ewt717 Member Posts: 41
    edited June 2015

    I finished radiation and started hormone treatment today. I have a headache. But I've been very surprised how hard it was, and still is, to recover from all of this. I was such a high-energy person and I am just so tired now. Also if I could do it again I would not have gone back to work for a couple of months, physically I think it was good to have some place to go and push myself, but my brain was just not there and I think it was not good for me to be there and feel like I cannot function mentally.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    i visited the infusion center today. I finished a baby blanket for my doctor who is having a baby girl on Thursday. I took the blanket to her and bakery treats to the nursing staff. It was a great moment to go back to the infision room knowing I wasn't getting chemo. It would have been today if I were still being treated. Got to encourage everyone else and walk out feeling great.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    Im curious how long it takes the new hair growth to go from this white peach fuzz to the natural color?

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited June 2015

    Live... Check out the thread on hair, hair. We are discussing that no

  • Darumama
    Darumama Member Posts: 135
    edited June 2015

    Thanks Chloesmom, I'm going to check out that hair thread too. I'm in the same boat as LiveD with the white peach fuzz. So happy to see some evidence of growth, but wish I'd get evidence of a new eyelash or brow hair.

    When I look pictures of myself from last year I can't believe how good I look. Of course back then I wanted to lose a few pounds and wasn't too happy with my hair. Why are we so hard on ourselves? Now 15 pounds heavier and bald, I think the old me really had it together (except for the cancer part of course).

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited June 2015

    I too had lots of energy before and could do things spur of the moment and with long duration, now I can just about get around 3-4 blocks and am tired and stiff. Feeling old, and yes only peach fuzz appearing, and sporadic, not much so when does this good stuff grow back in bushy and colorful? H
  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited June 2015

    my feet feel like they are broken today and now 9 weeks PFC my toenails look like they are history. The big ones are white nowand I think they are only attached at the base Waiting for it to start to getbetter. :)

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    thanks for the tip on the hair forum. I'll check it out.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited June 2015

    definite numbness in feet, some fingers are affected, ridges in all finger nails, big toenails are black, so guess I am gonna loose those for sure, others ok, What next?

  • Damselfly
    Damselfly Member Posts: 62
    edited June 2015

    Surgery is next for me! I get the new girl installed this afternoon and hope to be home by dinnertime. I am told it's a fairly simple procedure and not a long recovery but as with all things we shall see. I am still missing one toenail but have a good quarter inch of brown fuzz on my head that I can't stop touching (I'm 9 weeks PFC) The eyebrows came in more slowly but they are there, and I've always had sparse eyelashes so I'm not surprised I have thin ones now. I've been using Rogaine since 2 weeks PFC too so that may have helped. Have a great day everyone!

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    ill be glad when my hair grows a little longer. Its about 3/16" long peach fuzz still and when I go outside without a head covering I feel like my head is a target for flying insects. They keep trying to bite me. Never had that issue when I had hair

  • Darumama
    Darumama Member Posts: 135
    edited June 2015

    Damselfly, I hope all went well with the surgery. I'm curious to hear how things go. I'm not getting mine done for six months but they told me it would be somuch easier than the mastectomy. The surgeon even suggested that I might just need a weekend to recover before going back to work. Hope it's just minor inconvenience!

  • Damselfly
    Damselfly Member Posts: 62
    edited June 2015

    Well things seem to have gone well with the surgery. I wasn't in the hospital for long (from about 12:45 to 4:30), waking up was a bit easier since I hadn't been under for long (I think it lasted about 30 minutes in my case). I still feel a bit funky -- I'm sure there's still some drugs floating around in my system -- and my arm and armpit are sort of mildly irritated. Goes without saying I'm not doing much with my right arm. DH is bringing me spaghetti and ice cream etc. Hope things stay good after the drugs have all worn off. It is good to be done with the trips under general anasethesia. I'm not a big fan of that disorientation. My surgeon said one week will probably be enough healing time but I think I am going to shoot for two with work since my job can be pretty physical. And next week I go to get my port out, and my parents are coming up for the 4th so I will be pretty busy. Now I have to divide my time between rubbing my fuzzy head and tenatively checking out my chest which mercifully does not feel like a cannonball any more.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    my PS won't do the exchange for 6 months after rads as well. So TE for another 7 months.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    damesfly glad you are doing well. Wishing you Speedy healing

  • Darumama
    Darumama Member Posts: 135
    edited June 2015

    How are you doing Damselfly? So the implant feels better than the TE? Hope you're healing nicely

  • CarolynAnne
    CarolynAnne Member Posts: 57
    edited June 2015

    You are all so inspiring!

    Sugarcakes- Wow! I am sure your new girls will look as fab as your current girls! Best wishes on your surgery!

    Darumama- I am sorry for all of your SE's. And as for your mom- well, no one quite understands unless they have been through what we have. She certainly means well and is really hoping that you will feel "normal" soon!

    I have had headaches, bloody nose, vision changes and major yuck mouth with Taxol, overall though, better than A/C- not as much fatigue which is really nice.

    So I have 4 of 12 total Taxol left to go (already did 4 A/C) until I am finished with chemo. Problem is, my port has been painful for me from day one and I am just about at wits end with daily pain and discomfort in my chest, neck, underarm and shoulder. Also during the past 4 treatments, they had trouble getting blood flow and they has to lay me back and flush port. They think it might be fibran sheaths?

    My MO and I have gone back and forth and she thinks the stress of the pain is bad for me. She thinks I ahould just get the port removed and use a vein for the rest. Despite my issues with the port, the thought of using a vein worries me too! Did anybody else have Taxol without a port? Iam going for a port evaluation tomorrow so we will see if there is something wrong with it, if not, I guess I will just tough it out for another month. Ugh

    Thanks everyone!

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited June 2015

    suggestion on the port. I had an issue with no blood return and seems I was too dehydrated, they told me to keep drinking as much DAILY as you can get in you. After I hydrated more, no pain, and good blood return, yes it is uncomfortable, but if it's in there correctly, suck it up.. Would hate a collapsed vein.

  • TortyLass
    TortyLass Member Posts: 43
    edited June 2015

    If it is found to be a fibrin sheath on your cath, PLEASE watch for ANY unusual signs of head/neck pressure, roaring in your ears, shortness of breath, etc when you raise your arms over your head or bending over.

    I had Port issues too. Mine never felt "ok", we struggled to get draws, and after a contrast X-ray found a decent sized fibrin sheath. Used cath-flo to get it working for infusions but it was still hit and miss for draws.

    I started those symptoms back at the end of March. I told chemo nurses and Onc about them and that I was afraid the sheath broke free. They said no and they put it off as fatigue as I had just complete 4x TC. Well the symptoms just got progressively worse and I really pushed the issue with my rads oncologist who was highly concerned. He sent me straight over to the ER for a CT scan where they found a large blood clot (not the fibrin sheath, but caused by it) and admitted me on the spot. That was Monday at 7:30am. I've been here in the hospital since (today is now Friday - I think lol) on heparin and just had the port removed yesterday. Will transition to Coumadin today and get home finally. What a week!

    Bottom line, speak up loudly and be persistent if you feel anything like those symptoms!

    Hang in there.You got this!!!! Xoxo

  • CarolynAnne
    CarolynAnne Member Posts: 57
    edited June 2015

    Jerseygirl927- I will try to drink more and see if that helps. I don't want to give up on the port this close to the end! Thanks!

    TortyLass- that is terrifying! I am so glad you are okay, and I am glad you are finally getting out of the hospital. I can't get over the feeling that something is wrong but I just keep hearing "you are on a blood thinner, the chances of a clot forming again is tiny" I know! I get it but why do I have this pain in my neck?

    I am going today to get the port evaluated. Do I hope they find something? IDK.

    I will let you all know what happens...

    Thanks and Strength to all!



  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited June 2015

    good luck Carolyn, hope it's nothing, I have had blood clots in the past so hope this port holds up, I can feel the line/tube that leads into my neck. A little scary, but had a portograph about a month ago when no blood return, so keep hydrated.

    Tortuous, glad you stuck up for yourself, be your own advocate... Your just a number in the big scheme of things. Had that idea, but we are all guinea pigs in this cancer protocol environment.

    Be well all

  • Darumama
    Darumama Member Posts: 135
    edited June 2015

    CarolynAnne, Hope all is well and you can keep using the port!

    Tortylass- Yikes! Feel better. It must feel great to be port-free.Thanks for all those symptoms to watch for. I'm going to be living with my port for another 7 months or so since my doc wants to do another PET scan six months after rads end. I have to be vigilant. If all goes well the PS will remove it during reconstruction.

  • Damselfly
    Damselfly Member Posts: 62
    edited June 2015

    I am feeling great Darumama! The only issue I have with the reconstruction is that they won't allow me to do heavy lifting etc. and I feel like I could, but I don't want things to get dislodged down there so I will let it be. I'm looking forward to finally having a shower tomorrow. And yes, it does feel much better than the TE -- no more sharp corners, though I think the shape will keep changing for a while as things settle in, so to speak. It's nice and perky now. :) Now if I could just reliably sleep through the night, but combining hot flashes with general summer heat is too much. I had to run down in the middle of the night last night and grab a cold pack from the freezer. :p Still it's small potatoes compared with what some of you are still dealiing with. Keep moving forward ladies and we will all get through!

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited June 2015

    anyone have flu like symptoms? Noticed I have been getting cold in the evenings, almost every night, then after 3 hours or so, back to normal...? I am done chemo, but still on trauzamataub and arimadex daily?

  • CarolynAnne
    CarolynAnne Member Posts: 57
    edited June 2015

    Well, having the port evaluated was a colossal waste of time! He looked at it for 2 secs and listened to my symptoms and said that all they could do is take it out if it is bothering me but he wouldn't recommend it because I would have to ise a vein for my last 4 Taxol. He said it was fine, take some pain meds and basically suck it up. Geez, sometimes I love docs but other times ......urghhhhhh!!

    I thought he would at least do an ultrasound or something but he said that wouldn't show anything. He didn't rule out that there may be something causing my pain but he didn't think it was the port and therefore not his problem ( he didn't say that, I am just projecting)

    Guess I get to complain to my MO on Monday again.

    Thanks for listening...

  • Damselfly
    Damselfly Member Posts: 62
    edited June 2015

    Well I got my port out this morning. Everything is done -- now it's just checkups and checking in every 3 months or so. It's oddly anticlimactic. There's no official test or anything, just watching for symptoms if any and "live your life". I feel like I should be more excited, but I think part of me is waiting for the other shoe to drop. Maybe when I finally get my clearance for heavy lifting and my certification to go back to work things will feel normal again, or whatever my new normal is going to be.

    Sugarcakes are you having surgery soon? I hope it is easy for you -- should be a snap after chemo! (we can handle anything now, right?)

    CarolynAnne I hope your MO was sympathetic and offered something to help. I can't believe they haven't run into this before.

    JerseyGirl -- cold flashes?! I wonder if this is some sort of weird hormonal fluxuation. (This based on nothing -- what do I know? I get chills right after my hot flashes but only then and they don't last that long.)

    Stay strong all!

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited June 2015

    Go to MO for 3 month check up PFC. Still tired and achy, but hair filling in where sparse on top. Neuropathy in the feet makes it hard to balance. Going to PT to get the shoulders moving better. Seems like my whole world still revolving around BC. Lurk here several times a day to see how you all are doing. Hugs to all!

  • Darumama
    Darumama Member Posts: 135
    edited July 2015

    I'm not even 4 weeks pfc yet and I am on radiation treatment 9/28. My heals are still numb and I still have chemo brain, but the most nasty SEs from chemo seem to have passed. However, today my RO told me my white count was low. My white counts were always very good during chemo and the reds were bad.RO says it could still be chemo related, but rads will do it to you too. Haven't had Neulasta since June 6th. RO said we'll watch the white count for now, but on the way home I was wondering whether they would want me to have Neulasta again. I actually wouldn't mind if that happened. It appeared to work during chemo and I never had to worry about the low white count.

    I've been having trouble sleeping at night even though I'm pretty tired from rads. I always seem to be too hot or too cold and fiddle with the covers all night long. On July 8th I'm getting Lupron for ovarian suppression and will start Arimidex. I'm afraid it's not going to help the sleep situation.

    Damselfly, congrats on being port free! I think I'll always be waiting for the other shoe to drop, I know what you're talking about. I think at the end of treatment it's going to feel like being set adrift. I don't see my MO every two weeks any more, or my PS, and I finished 4 months of PT on my first day of rads. But all those visits have been replaced by my daily trip to rads and weekly RO appointment. When this ends I think I'm going to miss the reassurance of having a team always checking my blood and generally watching over my health. On the other hand, I so much want to move forward with my life. Will definitely be searching for that new normal too.

    Carolynanne, did you use your port for chemo since your doc visit?


  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited July 2015

    seeing PA tomorrow before hercepton, gonna mention the cold flashes, balance issue, and a few vertigo issues. Maybe about dexiscan and is 6 months after first echo, is the next automatic or only if problems?

    Stay well all. Will checkin tomorrow.

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