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Starting chemo January 2018

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Comments

  • Shlomit
    Shlomit Member Posts: 68
    edited February 2018

    SarahSC, good luck tomorrow. I had my second TC on Friday, and today (day 3 post treatment) has been another day of feeling flu-like, but knowing it's the chemo. You mentioned cannibus. We now have medical mj available in my area. Did you find it helping you through the 1st treatment, and if so, what form did you use? I see you refer to using the vapor. I have two more rounds, and if there's something else I can do to mitigate these side effects, it would be nice. 

    Happy to hear your cold capping at day 21 has been positive. Thankfully, I started with somewhat thick hair using the Arctic caps, as I've been shedding a bit since day 19, although today it seemed a little quieter. Will be switching to wet washing my hair once/week.

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    SarahSC - I swear that cannabis is the only thing that worked immediately for me for nausea. I hear you on the sugar cravings! The more something is denied, the more I seem to be craving it. Apparently maple syrup is the only "recommended" sweetener for cancer (it kills some cancer cells in vitro) and dark chocolate has so many good proprieties that it is ok - source a nice bio one. Then I read that peanut M&Ms have a low glycemic index and I went ape happy and shoved an entire bag in my mouth via three handfuls. Probably best to be saved for extra special occasions. What cold capping are you using?


    Lmurphy - you are a star doing dose dense! WOW!


    Moth - the effects are a bit cumulative yet also random, I felt like death after first round, after round two (with lowered dose) had annoying side effects and after three was just lethargic and zero nausea or other nasty things.

    I read up on probiotics and the potential dangers are very limited and are rare. I certainly wouldn't use Garden of Life products or any probiotic from a soil.

    The chemo will kill the entire gi tract and it needs to be repopulated with healthy bacteria for all normal bodily functions.


    Here is some news for comparison for those of you on Zarzio (the lighter version of Neulasta) - I did three shots on days 5-7 post infusion and wbc were 14k! My guess is only two shots are sufficient and I can happily report ZERO bone pain and I can now go out of the house.



  • insideout2
    insideout2 Member Posts: 108
    edited February 2018

    Dxat37- good information. I have struggle with sugar.

    Lmurphy- I also eat Activa , once per week.

    Day 1 of chemo 2 went well. I requested the freeze spray to numb my port before needle entry. This worked for the needle, but felt a sting were my port stich is located. This made since I had went grocery shopping on 1/17 and found a great deal on Gatorade and stock piled like crazy. This would not normally be a problem except I was tossing large packs in the basket with one hand. I am a couponer, I stock pile what we use and need. I hadn't grocery shopped in a while due to SE and was pumped. I felt the pull, but didn't think it would be bad since I got the port 01/11.

    Well after the sting stopped all went as expected. This time I didn't have any direct injections in my port. All via IV in the port. I arrived at 9:30 done at 3. Cytoxan 1st, Day 1 of 5-fu, and Adriamycin to go.

    I iced hands and feet when chemo was given on site. I will ice both 2-3 times a day for 40 minutes 2 and 3 while receiving Adriamycin. No problem with hand or feet feeling numb.

    I started my medicine once I got home. I do not want to chase any SE. I learned my lesson with Chemo 1.

    I guided the kids to fix chicken alfredo using the meat I prepped last week. This should feed the fam for two days. I am not too hungry and do not want water. I mostly drunk smoothies I made before the appointment and boost. My goal is to get back on the water train today.

    I am have not cut my hair. I have been wearing my hair natural since 2015. Since chemo I wash it every weekend in cold water with sulfate free shampoo. Followed by leave in conditioner. I then apply Jamaican castor oil, olive oil, and place my hair in six large flat twists. I wear my wig to work and church. I hadn't wore my twists like I normally would because I am not sure how my hair shedding will occur. I change my hairstyle frequently, but not mid week. If hair loss will occur I was told it will be at least by day 3 of round two. I may not notice hair loss until I wash my hair because of the flat twists. If I do notice it while taking it down my plan is to stop grab scissors cut the twists and shave off the rest. If I do a good job maybe my son will let me do his edge ups.

    I didn't use any of the major cold capping companies. I couldn't see how I could accomplish it with 4 days per round. I have been trying something different using the theory of cold capping. If it works great, if not it was worth trying.

    This is my longest post. Thanks for allowing me to share my thoughts.

    Sending everyone hugs and well wishes.


  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    Ladies with the port: how long you did you keep it dry to heal? It's a week since insertion, im doing sponge bathing, but I'm longing for a nice long shower! especially now, that Lupron finally started to kick in: i'm getting hot flashes and sweat like crazy:(


    yesterday my back spasms came back on a clock on the 6th day of Neupogen injections (7th day post chemo). I was prepared this time: took the muscle relaxant every 7 hours (cyclobenzaprine- 10mg) total of 3 pills a day. It definitely helped, spasms weren't as severe as the first time, but i was non functional. Vegetated in front of computer all day, chatted with my family online( they live in Ukraine). and by the end of the day i was so worn out, fell asleep as soon as my head hit the pillow.

    Today I woke up full of energy as if nothing happened yesterday:)) Vacuumed the house and made breakfast for myself and hubby. My little one went to daycare. (yesterday Canada celebrated family day - had to send her to the relatives, as i was not able to look after her). And now I"m about to get ready to go to Look Good Feel Better workshop! so excited! cannot wait!:))


    SarahSC- good luck today!


    Have a wonderful day, my sister- warriors!:))


    Be the sunshine!


    and


    Smile- because life is beautiful!:))))

  • murfy
    murfy Member Posts: 259
    edited February 2018

    I can also vouch for the 'lighter version of Neulasta'. Mines generic name is Granix and I go in the morning of days 7-9 for shots. Easy because I'm only a few miles from clinic. WBCs also >13K. Doc told me next time I will only require 2 shots. Claritin before each shot and I've learned that Tylenol the afternoon after shot will thwart bone pain...assuming there would be some.

    I'm a big believer in 'everything in moderation'. Easter is hands-down my favorite candy holiday. I have already started hoarding Cadbury mini-eggs for the year. I eat 5 mini-eggs a day and that's about it for sugar in one day! But, doggone it, I love my mini-eggs!!

    Inside, thanks for explaining FAC. I've been curious about the different chemos, their side effects, and how you ladies deal. I so appreciate our individual-ness and learn so much from reading about your 'adventures'!

    Laura

  • Shlomit
    Shlomit Member Posts: 68
    edited February 2018

    Olesya, when my port was put in, the site was covered by the surgeon with a liquid bandage that dried clear. I was told to wait a day to get it wet, but after that, I had no restrictions and had no issues with it. I've been through two treatments now, and knowing that I have small, deep, rolling veins, I'm glad I got the port for the chemo.  That said, I so can't wait for this to be over and get the darned thing out.

  • SoL
    SoL Member Posts: 4
    edited February 2018

    Good morning Ladies,

    I'm pretty sure I can find the information somewhere but every time I follow a "found", it is just with a lot and lot and lot of discussion to go through just to find my info, and I manage to NOT find it ! Loopy

    Ok, so, I had 4 rounds of Paclitaxel, once a week. It's been all good, side effects expected and manageable, we'll say. I'm suppose to have my 5th round tomorrow, Wednesday.

    Blood work yesterday, first I see my WBC lowering in "the red", my RBC is always a bit too low, and my platelets followed of course but are still in the "orange" i'd say. So with numbers, it goes : WBC 3.4 - RBC 10.4 - Platelets, 128.

    I contacted my oncologist already but she hasn't answered yet, when are WBC too Low for chemo ? I know they have solution, just need to adjust family plans for it if they decide to push my 5th round, or will I still need to be there for the appointment so they can give me whatever they give to make the WBC normally react ?

    Anyone knows ?


    Thank you !

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    My oncologist looked more at the neutrofils - Ihad 1200 she wanted 1500. We went ahead just the same because I begged and day 4 post infusion (EC not weekly) I did the bone marrow enhancing shots.

  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    Feeling fabulous after the LoOK Good Feel Better workshop. And a bonus : a bagfull of high quality cosmetics. If you have chance - very recommend to attend it:)image

  • Coach1216
    Coach1216 Member Posts: 16
    edited February 2018

    Krose: love your family! That is truly special

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    Gorgeous Olesya! Keep smiling :)

    Has anyone done microbladeing for eyebrows? I think I might head in that direction.

  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    Amelia_ i have done it in the past. did it twice in China though (while i was traveling). It was cheep, but lasted only 4 years or so each time-they use some temporary dye. I don't know the prices here in Canada or in Europe,but suspect it will be very expensive. to be honest-it worth it! since the dye cleared out i barely can see my eyebrows. if it wasnt so expensive i would do it in a heart beat again!

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    You look great, Olesya! You glow!!!

    I thought about doing microblading. My hair stylist recommended it. My eyebrows are thinning out and they look tacky. I expect that soon they’ll be gone so I better get moving soon! I don’t even know where to go. I’ll do some research. This is the kind of research I actually like doing. I confess that I’ve been shamelessly piggybacking on the cancer research done by you, ladies! :)

    I have my third Infusion tomorrow. Saw my MO yesterday. I was a bit nervous because, well, I wasn’t too careful this time around, meaning: I went to the gym doing group classes, didn’t wipe their weights before (I bring my own yoga mat though), took the kids to the movies, my son had strep throat, my husband had a cold, I didn’t wear a mask, you get the idea. I think the Neulasta kept me well protected, because most numbers were normal, so I’ll try to keep that in mind next time, before I complain of aches and pains.

    One thing worried me, but not the MO - I developed mild anemia. The hemoglobin was at 115 - the low end of the range at my hospital is 120. I hear others go with 105. So they told me it’s normal and to be expected, but I don’t know... I think it’s also part of the reason I’m tired and weak. Has anyone else experienced this? And what, if anything, do you do about it? I take a multi-vitamin with iron in it but it doesn’t look like it helped. They told me I don’t need to take iron supplements, and to be honest I don’t want to, they make me constipated.

    Take care, ladies, and hang in there! It’s always easier to get through thiswhen we have such a great support group like ours!

    XO

  • Olesya
    Olesya Member Posts: 109
    edited February 2018

    i find that i don't have any appetite issues with chemo. As the matter of fact its a lot more amplified- i eat like crazy! I don't know perhaps it's the SE of Lupron that changes my hormones at the moment. I am hungry all the time. It is also very frustrating as now my taste buds are gone again. so im in search of food that i can actually taste, therefore im eating even more....sigh.....

  • erob321
    erob321 Member Posts: 59
    edited February 2018

    roxy- I’m with you about anemia. My mo told me to take an iron supplement though. The nurse told me to start eating cream of wheat, it has 50% of your daily iron in one serving.

    I’m going to the infusion center now. One left after today! Hopefully I don’t end up in the hospital again like the last round!

    Good luck ladies! We can do this!!

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited February 2018

    Thanks Erob. I needed that boost. Leaving my house in a couple of hours for AC #3 of 4. Deep breath, I got this.

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    I’m heading over in half an hour. Good luck today, ladies!

    @Erob321, thank you for sharing your cancer team’s advice. I think I’ll switch to a multivitamin with more iron. I already eat iron rich foods, so I don’t know what else to do.

    Big hugs, everyone!!

  • murfy
    murfy Member Posts: 259
    edited February 2018

    You've got this warrior ladies! Had my #3 dose-dense this week and not bad at all. Hugs...

    Laura

  • krose53
    krose53 Member Posts: 74
    edited February 2018

    Hi, Hope everyone is doing well. Olesya, you look beautiful!

    Has anyone gotten any mouth sores? Any advice? Just noticed 2 bumps on the roof of my mouth today.

    I’ve been in the hospital since Tuesday due to getting Influenza A on Day 6 after chemo. I had a fever of 101 and that’s the criteria here for admission. Feeling 100% better. Even though I was careful, my poor husband brought t home. The word is, I’m going home today

    Keep strong, ladies so appreciate all your help and advice


  • Shlomit
    Shlomit Member Posts: 68
    edited February 2018

    Krose53, ask your doctor whether your mouth sore issue may be "thrush". It's something I developed after my 1st treatment and I was prescribed Nystatin liquid to swish/gargle 4x/day, and it took care of things quickly. Look at your tongue and inside of your mouth; if it's whitish, you may have it. I had my 2d treatment last Friday, and started feeling the same mealy-mouth gunk and started the Nystatin again. I understand it's a pretty common side effect and easily treatable.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited February 2018

    Are you brushing after every meal then rinsing with water with salt and baking soda? Doing that, plus taking Lysine has kept mine minimal. I'll get mouth sores, mostly from eating rough foods like granola bars, but then they are gone the next day. Evidently Biotin works well too, but I stuck with the low-tech solution that works for me.

  • insideout2
    insideout2 Member Posts: 108
    edited February 2018

    Finished round 2 today. I wish everyone the best.

  • insideout2
    insideout2 Member Posts: 108
    edited February 2018

    Finished round 2 today. I wish everyone the best.

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    Finished round 3. Mildly nauseous, otherwise ok (so far). Can’t wait to ring that bell in three weeks!

    Take care, ladies! We can do this!!!


  • Deaelle
    Deaelle Member Posts: 43
    edited February 2018

    I am 6 days out from chemo 2 (last Friday) and I feel like the SE again kicked my ass - they are just a bit different this time. Started with major diarrhea that night which kind of wiped me out. I did manage the IBS issue better this time, which had appeared last time unexpectedly. I also took way more codeine for the Neulasta bone pain (which still is not gone! Can't believe how long that hangs around for me), but because of that I also wasn't eating too much because I was afraid of the gut issues with the IBS and the codeine constipation, so I lost almost 10 pounds in 5 days, and have been extremely fatigued again!

    Then yesterday I developed thrush in my mouth from adding a tiny bit extra steroid for the bone pain (on Monday and Tuesday (approved by my MO). It is just as described Krose53 and Shlomit, and I'm rinsing with the Nystatin. Next time I will use that prophylactically and see if it keeps this at bay. Before that, I have used the Biotin rinse and I didn't get any canker sores last time.

    Krose53 - hope you are home now.

    Oleysa - you look beautiful! I was also struck with the amount of goodies we go home with from the LGFB workshop.

    Roxy13: Can you have the microblading done during chemo?The person I bought a wig from had it done and it was pretty impressive I thought.

    I am wondering about getting a pedicure before my next treatment. Any thoughts from anyone about health/safety issues with that?

    I just want to get back to my old energetic self that emerged in post weeks 2 and 3 last time. Any day now I hope!

    Wishing all a good weekend!

  • Roxy13
    Roxy13 Member Posts: 116
    edited February 2018

    The Neulasta pain lingered for me too, Deaelle. I’m dreading it.

    And no, they won’t do microblading during chemo. I made a phone call today to ask some questions at a lash place I found and the lady told me to wait a couple of months after I’m done. What do we do with the eyelashes, though?

    I had manicures every week during chemo. I think it’s ok. I bring my own strengthening nail basecoat and polish. I don’t know if it makes a difference, but makes me feel better.

    X

  • insideout2
    insideout2 Member Posts: 108
    edited February 2018

    I noticed my sleeping pattern since starting Chemo is all over the place. This is contributing to my fatigue when I try to maintain my daily schedule. End result I am up when normally I would be sleep. Any suggestions?

    I stuggled with getting calories in on my final day of this round and became extremely weak. I ate, but nothing that was supporting my body. I ate healthy, but should have added a milkshake or two.

    I have not seen posts from a few, I hope all is well. I Know when we are tired we read the posts. So to all stay strong.


  • LKinKC
    LKinKC Member Posts: 41
    edited February 2018

    Hi fellow fighters, It's good read everybodies post and to hear how everybody is doing. I am 10 days past #2 treatment. The bone pain was worst this time for me also this time but much better at taking the pain med for it. Luckily the doctor doubled my previcid. No burning indegestion this time and am quicker to take the magic mouthwash which puts the fire out. My MO was not happy with my weight loss, 11 pound weight loss in the first round. So I have really been carefully to make sure to eat. I've been able to manage the nausea and diarrhea better so fsr but I am starting the same feeling as last time nothing looks or sounds good and I have to force myself to eat something. I'm not sure if it's nausea. I am going to the store tomorrow any suggestions on shakes or protein drinks?

    Good luck to everybody

  • Coach1216
    Coach1216 Member Posts: 16
    edited February 2018

    Roxy: I would change doctors. As I am lost when it comes to the medical field I need to relying on my doctors recommendations so I need to feel like they are my strongest advocate. Not something I would have thought about before as I have always been healthy but this definitely puts a new perspective on things

  • CENOK2017
    CENOK2017 Member Posts: 54
    edited February 2018

    woke up this morning with blood coming from rectum. I did not have a bowel movement yesterday. Could this be normal? I had my second round of chemo Monday

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