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Starting Chemo in July 2017

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Comments

  • PauletteK
    PauletteK Member Posts: 1,279

    happy to hear everyone are doing well. My day 11 back to normal. Did everything I can today and my stomach is finally settled, one happy girl.

    I didn't have any PT on schedule should I ask for one??

  • DawnP64
    DawnP64 Member Posts: 15

    runnermum - I've been using apricot nectar for constipation. Dr. suggested prune juice, but I couldn't stomach it.

  • PauletteK
    PauletteK Member Posts: 1,279

    DawnP how much of the apricot nectar juice did you drink?

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265

    This is the first day after six weeks of losing my hair and a lot of compliments that I could look at myself in the mirror and say it doesn't look too bad being bald. What little peach fuzz is left I expect will fall out when I start my Docetaxel in three weeks. 😔 Oh well I will grow back 🙂

    I really thought I'd be okay with being bald but turns out not so much. This cancer is tricky business, plays on your emotions, you beliefs.

    For those wondering about second treatment side effects. Everyone is different but my experience was way more fatigue and more nausea which wasn't really from the chemo but all the other drugs they give you to counteract the side effects. My nausea was from alternating diarrhea and constipation. But of course they gave me more drugs for that which has its own new side effects. Will be glad when this is all over.

    Next chemo will be a new chemo drug so new side effects to start all over with.

    Life is good! Hang tough, it is doable, one day at a time

  • JenRuns
    JenRuns Member Posts: 299

    *flat out whine*

    I have tried to be really "good" about not complaining about SEs. But it is patently unfair that I have a raging period. I had an IUD prior to surgery and had an awful time when that was removed. This period is almost as bad as that. Miserable and want to curl up in a ball.

    *rant over

  • sunnyjay
    sunnyjay Member Posts: 143

    Paulettek - My BS referred me to a PT about 4 weeks after my surgery, and it was because I had axillary lymph nodes removed. My PT was really good because she specialized in lymphedema and was able to help with tightness throughout my arm. She said i had tightness in my armpit which I didn't know about because it was numb from the surgery. But she was able to loosen it and I gained range of motion rather quickly. I met with her 5 times (once a week for 5 weeks), and she gave me exercises to do at home so I highly recommend looking into it if you haven't been referred since it looks like you had additional lymph nodes removed.

  • lojo100
    lojo100 Member Posts: 92

    sunnyjay - I purchased my wig from wigs.com (was recommended to them by my friend with alopecia). It gets here on Wed., will let you know what I think. From the picture, it is very close to my hair (I sent the link to my Mom and some friends and they all agree that it looks a lot like my hair, so here's hoping!). My friend recommended taking it to my hairdresser if I think it needs some trimming/thinning.

    Runnermum - love that you are getting quality time with your 13 yo. and I love the idea of a blessings bracelet. Glad that you are feeling more like yourself!

    pink - I have been cold capping, but it isn't really working (many bald spots, etc.). I ordered a wig and scarves, etc. I thought I was okay with going bald (I decided to cold cap so that I wouldn't get tons of questions and the 'pity' looks from people)... but turns out it is tougher than that. I'm slowly coming to terms with it, but it is rougher than I imagined. I send you many good thoughts!

    JenRuns - I got a crazy period a few days after my first infusion, and it lasted almost 8 days!! If I get another period, it should be in the next couple days. Honestly, the one side effect I was really happy about was the period not showing up, so... here's hoping! Sorry you are suffering, I hope it gets better soon!

    I'm seeing my MO, tomorrow. This hives thing is for the birds! The steroid seems to be kicking in, yay! The hives to pop-up throughout the day, but much more manageable than they were this weekend. I started to realize that a few things that happened during the first round may have actually been side effects that may have predicted something like this. So I sent my MO a full list of everything I've felt since this ride started. I feel good, otherwise... of course the prednisone steroid is amping me up a bit and causing some indigestion, but nothing too unbearable.

    We'll see what the MO says about the next two rounds. I'm curious.

    Went to work today, and actually felt better just getting some movement in (I didn't walk much this weekend, because I didn't want to aggravate the hives). Took a nice walk with DH this afternoon, which helped my mood and got the blood moving again.

    Here come's August!!

  • lojo100
    lojo100 Member Posts: 92

    sunnyjay - I purchased my wig from wigs.com (was recommended to them by my friend with alopecia). It gets here on Wed., will let you know what I think. From the picture, it is very close to my hair (I sent the link to my Mom and some friends and they all agree that it looks a lot like my hair, so here's hoping!). My friend recommended taking it to my hairdresser if I think it needs some trimming/thinning.

    Runnermum - love that you are getting quality time with your 13 yo. and I love the idea of a blessings bracelet. Glad that you are feeling more like yourself!

    pink - I have been cold capping, but it isn't really working (many bald spots, etc.). I ordered a wig and scarves, etc. I thought I was okay with going bald (I decided to cold cap so that I wouldn't get tons of questions and the 'pity' looks from people)... but turns out it is tougher than that. I'm slowly coming to terms with it, but it is rougher than I imagined. I send you many good thoughts!

    JenRuns - I got a crazy period a few days after my first infusion, and it lasted almost 8 days!! If I get another period, it should be in the next couple days. Honestly, the one side effect I was really happy about was the period not showing up, so... here's hoping! Sorry you are suffering, I hope it gets better soon!

    I'm seeing my MO, tomorrow. This hives thing is for the birds! The steroid seems to be kicking in, yay! The hives to pop-up throughout the day, but much more manageable than they were this weekend. I started to realize that a few things that happened during the first round may have actually been side effects that may have predicted something like this. So I sent my MO a full list of everything I've felt since this ride started. I feel good, otherwise... of course the prednisone steroid is amping me up a bit and causing some indigestion, but nothing too unbearable.

    We'll see what the MO says about the next two rounds. I'm curious.

    Went to work today, and actually felt better just getting some movement in (I didn't walk much this weekend, because I didn't want to aggravate the hives). Took a nice walk with DH this afternoon, which helped my mood and got the blood moving again.

    Here come's August!!

  • Leatherette
    Leatherette Member Posts: 272

    For those of you who have been through more than one round....does your sense of taste come and go, or is it just gone? I was hoping I might enjoy real food for a little while towards the end of a cycle. I am having a serious pizza craving right now (not that I could handle that)

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265

    Leatherette: First go round I had no taste issues. Second one it started about day 4 - 5. Came and went. I found rinsing with salt water helped. This last session was Saturday and the nurse said to suck on ice chips. Well, that didn't really work. My taste buds are starting to fade on day three. Doesn't seem to be quite as bad this time but I also think it could be from the Zantac that's causing the taste issues. I didn't use any Zantac the first go round but did for the second. Now I'm on something stronger which isn't really helping either.

    LoJo100: Slowly but surely, it just takes time. My head is either cold or hot. I've found bamboo buffs work the best. The bamboo breathes. When I go out I wear a baseball hat. No one can tell I don't have hair. They're always surprised when I lift off the hat to show them.

    JenRuns: Whine all you like, that's what we're here for. To support others and help lift them back up.

    I'm a little further along with my treatments than you July gals. I also belong to the June group. I find this site is so helpful in so many ways.

    Teese: How's that exercising going?

  • PauletteK
    PauletteK Member Posts: 1,279

    Thanks Sunnyjay ....I willask about PT on my next visit, I still have several spots under my arm are numb

  • Teese
    Teese Member Posts: 355

    Hello,

    Jen - you have every right to be mad. I'm sorry for this rotten period and so hoping it's eased off today. Talk about adding insult to injury. Hugs.

    LoJo - hoping the hives have continued to fade too.

    Leatherette- my taste buds have changed very little, the only thing I've noticed is water just tastes bad, really bad. I do have to rinse after everything I eat, even drink as I have a terrible taste in my mouth after. I'm on day 9 after 2nd infusion. So there is plenty of time left for changes. Oh joy!

    Still dealing with residual nausea, it keeps me from eating much and the weight I was able to gain back before infusion 2 is off now. I have high hopes of the nausea abating by tomorrow or Thursday and then maybe stabilizing my weight again before my infusion on the 7th.

    Ran errands today, it felt good to be out and about. Had lunch at Panera with my daughter. Wore my wig and loved being anonymous.

    Tomorrow I have my annual skin check with my dermatologist, but I was just thinking I'm probably not allowed to have things frozen off, because it might not be a good idea to have a bunch of burns on my skin. I'll find out.

    pink - yup I'm still trudging along, some days faster and with more enthusiasm than others.

    Well I'm zeroing in on infusion #3, less than a week away. After that just one more AC left, and for those of you doing adriamycin, I know we can't wait to leave that red devil behind. I literally count the days till it's done. Taxol will be another beast and I'm not thinking too much about it yet.

    Have a good evening, day or morning depending on where you are. Glad we all seem to be doing considerably well with just a few bad days here and there.

    Shout out to our infrequent posters, sydsym, hopeforthefuture, love my wife, purplestargazer, VL22 please check in when you feel like it.

    Enia, your killing me here, how are you doing there in Germany? I've decidedto think that you're so well and this hasn't phased you so your back at work policing full time and are truly Sup,erwoman. If not then we need an update!

    Okay that's it for the roundup. Love you gals.

    Theresa

  • DawnP64
    DawnP64 Member Posts: 15

    Hi Paulette - It's usually a small glass - probably 4 or 5 oz, once or twice a day depending on how constipated I feel.

  • sunnyjay
    sunnyjay Member Posts: 143

    It's been 2 weeks since my port was put in and I'm feeling a dull pain in the area. It doesn't look swollen or infected, and my bra strap is not touching it so I don't know what it could be. Does anyone else have this? I did sleep on my side last night, and started to feel pressure against the port so I'm thinking it may be residual pain from that.

    Edited to add: My port was only accessed once for my first infusion and that was the same week it was put in (2 weeks ago).

  • PauletteK
    PauletteK Member Posts: 1,279

    Sunnyjay - I have to admit I'm still not feeling 100% comfortable with my port especially when I sleep on that side. But I am not comfortable to sleep on left side since my incisions still swollen a little.

    I'm enjoying the next few days before my 2nd infusion on Friday.

  • afball25
    afball25 Member Posts: 1

    I am starting chemo 8/16, and am going cross eyed from all this info...I just want someone to send me a chemo starter pack or something..."Dummys guide to chemo side effects"...something to somehow clear up all this mess in my mind...I am going for some shorter hair cut this weekend, and then going out of town the weekend before chemo...I feel like I am going to have a lot of time to develop cabin fever over the next four months...

    My port goes in the day before my first infusion, and I feel like it's not going to be super comfy...too bad I cant fast forward through December

  • PauletteK
    PauletteK Member Posts: 1,279

    afball - I have a chemo bag so I put all the stuffs for my checmo day. Blanket, goodies, ginger candies. Then I just pretty muchgo with the flow, I follow my Mo drugs' schedule, get Nuun and smartwater, Claritin if you have the WBC shot, salty, plenty of frozen meals (I'm cooking now for my Friday infusion) .

    Everyone has different side effects ask question if you have any

  • Teese
    Teese Member Posts: 355

    sunny - I started to sleep on my port side part of every night just as soon as it was comfortable. I've never felt any discomfort since the initial soreness wore off. Plus the 5 days I was admitted after my first infusion I had it in constant use and there was no discomfort at any time.

    Hopefully someone else will chime in who has felt some discomfort and all was fine with it. I can't remember how it felt 2 weeks post insertion, probably still tender. Is it a constant ache or occasional

    Afball25 - yes it's overwhelming, and I want to fast forward to Oct 21, my last infusion. But you've come to the right place. I followed the April, May and June gals and it takes the unknown out of the equation. Pretty much the core SE are the same, some weird things get thrown in every so often. Keep reading, asking and posting.

  • purplestargazer
    purplestargazer Member Posts: 31

    Hello Chemo buddies,

    I'm playing catch-up after taking a break from the thread. I was getting too nervous for chemo via other people's experiences so I took a moment to just see what came my way without allowing unnecessary panic to potentially creep in.

    I'm happy to report that after two doses of DD AC I'm surviving :) The chemo brain days 3-5 are the worst but manageable. I also feel like I have pregnancy morning sickness again :) Nothing I can't handle, though.

    The port was uncomfortable and creeped me out for a few days, too, but I'm over that hump as well.

    I was cold capping but am losing hair in fistfuls so I made the big decision to give that up and am having my head shaved on Sunday. I have to admit, I'm unreasonably terrified. But I know that, past the initial shock, I'll be relieved. I have access wig already and just ordered some pretty head scarves.

    So that's my update. Now that I'm past the pre-chemo panic I'm aiming to be a more regular participant here.

    Thanks, everyone, for sharing and being such a supportive crew. I adore this site.

    ~Purple


  • sunnyjay
    sunnyjay Member Posts: 143

    For those that purchased head scarves online, are there any recommended websites? I tried Amazon, but didn't see anything I liked. I also want to support companies that assist BC patients and/or give back to BC research.

    Purple: so glad to hear that your infusions went well and rhat your SEs are manageable. Good luck with the head shaving! I still have most of my hair but that will most likely change after my 2nd infusion next week. It seems to be after the 2nd one that the hair loss really starts going.

    Teese: my port pain comes and goes. It's like I get a reminder every once in a while that it's still there. Just like my tissue expander. Most of the time I can't feel it's there, but very now and then it will ache and makes its presence known. I actually can't tell if ithe port area is swollen because I know it's supposed to protrude a little. I'll see how it goes the next few days. If it still bothers me I'll give the surgeon's office a call.

  • lightseeker
    lightseeker Member Posts: 36

    I'm going to do my second DD AC today at 1pm. I will work till noon. My hubby wants to be with me. I am normally a person who NEVER goes to a Dr. appt with anyone but, I am ok with it. I had a strange rxn to first dose. Immediately upon the IV push by Nurse, I felt a increased heart rate and then "cold" that moved down my body from chest to feet. I'm not sure if it was due to temperature of the solution? They believed that it was anxiety and gave me an ativan, waited 15 min and then continued (without further reaction).

    I felt a slight pain/tenderness while washing hair today. I'm not sure if this is THAT pain and hair loss will commence promptly? I've ordered 4 wigs and none have arrived yet; I hope I get some sort of tracking info today. I thought I had planned well but, I guess not everyone can be Amazon Prime :) I do have beautiful scarves and bandanas that match my handbags (and shoes) so I guess I will go that route, for now.

    My last week has been mostly ok so I was able to eat well. I feel prepared to begin this again. Fingers crossed.


  • runnermum
    runnermum Member Posts: 346

    The horrible fatigue is gone and the nausea is getting better. Just more tired then normal. Have exercised every day this week since Sunday. Will have my 2nd infusion next Tuesday. Trying to figure out how to manage the nausea a bit better. Stinks to have no appetite. It's not horrible but just feels like the 1st trimester nausea but this time not pregnant. I lost between 4-5# with the 1st infusion. My BMI is 19. I am not happy about losing any weight. I think keeping some crackers by bed and eating them right away in morning may help and adding a few protein shakes to my day. Also called my chiropractor about acupuncture yesterday to help with fatigue and nausea. Is anyone on this thread trying that? My Dr does not want me doing it on my low count days. But would love to try it the day after my chemo. I have to try something to get this nausea under control.

    As far as port...it's sore once in a while. No pain just dull ache. I ran the other night on treadmill...it bothered me a little bit nothing bad. I have the most trouble in car driving. The seatbelt hits it when I drive, but not when I am a passenger. It really bothers me then. I had the same trouble with damn seatbelt after lumpectomy. It would lay across my nipple and cause pain. That finally was better and now this. Will be happy to have this thing OUT!!

    Off to head out for a short run and walk. Then back to school shopping with a teenager!! Fun times!

  • Teese
    Teese Member Posts: 355

    sunnyjay- yup I remember now an odd ache or two. I think your good, but of course call if concerned.

    Purple - i can understand completely, we do whatever gets us through. I joined a couple FB breast cancer groups, but realized instantly that it was causing me real dread and fear when I read their posts. I had to leave the groups for my self preservation. If you feel comfortable here, or it turns out to be too much, either way I'm thinking and praying for you.

    Lightseeker - I read on here about another gal who had the racing heart, just the one time, they also gave here Ativan and it was relieved. She said it never happened again. Regarding the hair. Just after my second infusion I too was washing my hair and my scalp felt sore in a couple areas. A few days later it started to drop. A few days after that it came out in huge clumps in the shower. And so it goes.

    Runnermum- I've been doing acupuncture since mid June to gear up for this. After my first infusion and the problems I had with nausea, my acupuncturist then switched to cupping. I go on the Saturday before my Monday infusions. She felt this would work really well to counteract it. I can honestly say that this infusion has been much better, nausea way better. Plus since its cupping and no needles, no worries on the neutropenia front. I found it quite relaxing. I walked into that appointment with very mild nausea, walked out and it was gone and didn't return till day 4&5, but more manageable. So that's an option to discuss with your therapists. I hope it works as well for you.

    I do keep crackers at my bedside, I wake in the night with an empty tummy and a couple do the trick. Same first thing in the morning.

    Have a good day ladies. Be active as you can, I do envy those who are working. I can say though that my head is in a better place this infusion (#2) than the first. I'm thinking I was really worried and each day was wait and see what happens. So far this infusion has been a copy of the first with less nausea. I'm ready to move on to #3. Let's get this done and over. It's going to be such good days when people start chiming in that they've completed all their infusions. It's going to get here before we know it.

    Hugs

    Theresa


  • emily_mh
    emily_mh Member Posts: 53

    sunnyjay, since it's not red you're probably fine but it wouldn't hurt to ask someone to look at it. I'm two weeks out and my port is infected but it is light red and it is warm to the touch. I am taking an antibiotic and it seems to be helping.

    My hair is starting to really really shed. I'm going in to get it shaved on the 7th and I hope I can make it until then. I know it's so silly to be so upset about hair loss especially with all of the other things that are going on and because it will grow back, but wow, I just cry everytime I think about it.


  • runnermum
    runnermum Member Posts: 346

    Teresa...Thank you! I am going to call my chiropractor about cupping todAy. I have had dry needling and cupping done in last for a hamstring injury!! Thanks so much for the suggestion.

    On my walk this morning I stopped to chat with my neighbors. Husband is a pilot...he mentioned some pilots with motion sickness take ginger capsules before flying for motion sickness and it helps with nausea too. Going to check that out too.

    Emily ((hugs)) I am having a hard time with hair too. I have always kept it short...so the growing out stages will prob be easier for me. But I have a head full of thick thick hair. I can't imagine myself bald. My wig came in this week and my stylist suggested it would be less traumatic if I came in later this week and shaved my head and was fitted for wig. Nothing is coming out yet, I am only 8 days post treatment and so so not ready to do that yet. I think until I actually see myself losing hair I will not believe it will happen. With my thick hair I am always shedding...but the other morning in shower I thought it looked to be a little more then normal. I just sat and cried for about 5 min.


  • proudtospin
    proudtospin Member Posts: 4,671

    runnermom

    Ijust lost most of my hair this past week, i have always had thick hair so it was ......a mess. I had cut it to about an inch but still sa lot in my shower. I used a squeechy to clean the shower.

  • emily_mh
    emily_mh Member Posts: 53

    runner mom, I felt the same way, I didn't believe it was going to happen until I saw it coming out. I'm just mortified. That sounds like too much and my husband thinks I'm silly but I guess it's just the one thing that makes the bc so very noticeable to everyone. And I'm 46 and just figured out a good cut and color for me! :)

  • PauletteK
    PauletteK Member Posts: 1,279

    I need to check out the cupping you all talked about what kind of doctor should I check? It sounds like a good path for nausea.

    I kept my salty crackers right beside my bed I lost about 4-5 lbs on the first few days of my infusion then I gained about 2 lbs right after days 7 since I have my appetite back. For my second infusion I will try to have my ensure protein smoothie for the first couple days hope I wouldn't lose that much weight.

    As far as wig I ordered one from ACS and it hasn't come yet. I know my hair will be gone next week after the second infusion. No matter how much we prepared for losing our hair but I know it will be a big shock when it happens. The next one I worry is taxol might damage nerves on my hands and feet. I hate to put ice on my hands and feet because I hate cold but what can I do to avoid that?

  • emily_mh
    emily_mh Member Posts: 53

    runner mom, also, you are really inspiring me to exercise. I haven't been walking since this started and I used to walk everyday. I will get back out there or on the treadmill!!

  • PauletteK
    PauletteK Member Posts: 1,279

    I found this website when I searching for cupping


    https://www.google.com/amp/www.foxnews.com/health/...

    Please read !

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