Starting Chemo March 2016

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  • Luller
    Luller Member Posts: 1
    edited March 2016

    Hi Sisters,

    Just wanted you to add me to the roll call. Getting my port tomorrow 3/4 and starting chemo on Thursday 3/10. I'm a bit overwhelmed to say the least, but I have a wonderfully strong and amazing support system. God bless us all!

    Julie

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  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    hello and welcome to our new members- sending lots of love and light to you, Faith, Christy, and to all of you.

    Phaila and Azrescue, I have a nine year old as well. I showed her my wig today and explained a little bit about the chemo and that next week I was going to cut my hair (first session is Monday). She really doesn't want me to cut my hair and it's so hard because I feel I can tolerate my own feelings about how I look and feel, but feeling like I can't look like her normal mom kind of breaks my heart. I know she/we will get through it, I just hope it's not too upsetting for her.

    Nancy, I'm wondering, do I kind of have to shave my head, or is just getting a super short pixie cut ok? What is the disadvantage of not shaving?

    Also -people seem to be mentioning Claritin but I'm not sue I understand how that helps.

    I've added it to my weekend shopping list, as well as Biotene Mouthwash, dry eye drops, throat drops, hand lotion... Any other necessities people feel have been useful?

    I wish I could help take away some of the pain everyone here is going through / please know I'm sending love and gratitude and healing thoughts

    Xo

    Heidi


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  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    welcome Luller.Good luck with your port today.

    It's funny how many of us have 9 yr olds, mine is a boy. He is extremely worried about me. And on top of this another boy at school who bullied him all last year has started up again this week. It upset my son so much he tried to hurt himself with his pencil!! Just the extra stress my son needs! So yesterday was spent dealing with administration.

    And today is chemo #1.

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    One of the first questions my 13-year-old daughter asked was whether I will have to get "new" breasts. My 12-year-old daughter picked out a cap for me at aeropostale from the sale rack. My 13-year-old stepson, in reaction, talked about a classmate with leukemia who gets bullied and who he talks to and hangs out with - so he was saying that he has my back. They're all processing it from their own perspective and age range. The time period leading up to a change is sometimes worse than the change - the dread.

    I can't spare them from this strange year coming up, though, and I'm not going into it thinking I can make this a comfortable experience for them all the time. This is possibly the hardest thing I've ever looked myself in the eye and said to myself as a parent. Lord or Universe or Higher Power...help us all to say the right things to our frightened friends, spouses, lovers, and children, right?!

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  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    yes, exactly gamegirl, it's so hard to always know the exactly right thing to say - so we do our best and hope that all our loved ones can take the information in a way that feels safe and supported, and as you mention, everyone processes things in their own way.

    Melgirl, I'm so sorry about your son and that you had to spend extra time at school. Was the school supportive about it at least? Do they have a counselor or social worker there who might be able to provide extra support during this time? Sometimes that can be helpful, but I know it doesn't always solve things with kids. I hate hearing about the bullying, it makes me so upset. Sending strong healing thoughts your way.

    Going for my chemo info session today - will share any useful info with you all, although I feel like I've slready learned so much here

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    BK - you hit the nail on the head, thank you for putting those thoughts into such eloquent words. Perhaps the hardest lesson that came out of this for me the first time around is realizing in my very core that I can't protect those I love from the uncertainty and anxiety and pain this will cause. And it will. Because it's unknown. And then you throw the word "cancer" in there, and it makes it almost impossible to process on some levels. Our children look to us to be strong and invincible; it's an unfortunate life lesson that they have to learn so young that we're only human.

    Melgirl - thinking of you this morning, hoping for smooth sailing!

    Heidi - You don't have to shave your head at all, your hair will still fall out. :-( I wanted mine shaved because I didn't want patches of hair left (not every single hair will fall out, for some their hair just gets very sparse). I chose the pixie cut because I didn't want to be pulling handfuls of hair out of my head - that scares me. Shorter hair falling away doesn't bother me as much.

    And the Claritin apparently counteracts the bone pain from the Neulasta (which is building white blood cells in your marrow, so the bones are expanding ever so slightly). I'm not exactly sure how it works, but there are lots of conversations on these boards about the reason why. I used it the first time and it helped alot. I started this time taking it the day before chemo, and will take it another week. This morning I have a bad "back of head/neckache" likely from the Neulasta, but it's not something an Aleve can't help.

    Welcome to Luller, too - sorry you're here but glad you have joined us.

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  • Sheri64
    Sheri64 Member Posts: 113
    edited March 2016

    To all you ladies starting chemo this month I wanted to let you know it is doable.  I started in January and go for my third TX this coming Tuesday of TC.  I have worked the whole time only taking off the day of treatment and the day after.   I am tired but rest on the weekends. 

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  • Faith83111
    Faith83111 Member Posts: 11
    edited March 2016

    Morning ladies!

    For those that were inquiring about initial symptoms, today (day three) just as told by the doctor and nurses I woke up feeling like I had a very bad flu. I took a bath and that helped temporarily. I only received steroids during my infusion, so hopefully the next few days go by quick. My GI system also seems to be very confused between the Big C and the Big D lol.

    I have an 8 year old son as well who has been very inquisitive and very helpful. Outside of my overall health, he is also concerned about me losing my hair. He said he understands that I need the medicine to get rid of the cancer, but he just wishes it wouldn't make my hair fall out : (

    Claritin has antihistamine in it, which is what helps with the pain my nurse said, but she didn't really explain why.

    Hugs to all!

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  • Skittlegirl
    Skittlegirl Member Posts: 428
    edited March 2016

    Faith - I didn't work during my chemo treatment. My STD requires a 7 day waiting period each time you go out, so I just didn't have the sick or vacation time to cover that period more than once and didn't have the vacation time to cover my potential out days. I also work in a lab processing bio hazardous samples, so my job responsibilities would have had to change due to being immunocompromised. Plus I had chemo during cold and flu season and really didn't want to catch something. As it was I still ended up being hospitalized twice due to infections. I was thankful that I didn't have to stress about my job responsibilities or time off work while in the hospital.

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    I am working throughout treatment. I work in technology consulting for a very large firm, and I can work remotely and defer traveling until I'm healthy enough and not immune compromised. I plan to work 40 hours per week and my company has vowed to keep me as busy as I care to be. The downside will be an impact on my utilization rate. I plan to save the disability for the mastectomy and post-surgery healing.

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  • 786tex
    786tex Member Posts: 42
    edited March 2016

    How are you doing with managing the steroids? I am type 1 as well and had my first chemo a few days ago. My blood sugar has been out of whack ever since and I am now wearing glasses because it is messing with my eyesight. I don't have a pump but might try using my long acting that I only use at night but like you, I am afraid of going too low because I would hate to have that issue along with the chemo effects.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2016

    Hello March 2016 Ladies, I'm popping over from March 2015 to offer some moral support. I was starting my chemo a year ago and was very nervous and scared. These message boards, and especially my March 2015 group were life savers for me. Our March 2015 board is still very active today and I feel like I couldn't have made it and retained some of my sanity without them.

    My 12 weeks of Taxol went by fairly quickly, although at the same time it felt like it was dragging. Overall I did quite well, my worst SE was nausea which just wouldn't go away. I escaped with just minor neuropathy in my left foot and it seems to be getting better recently. I was taking vitamin B6 and L-Glutamine at the advise of my MO. I drank a lot of water throughout my chemo, even though I had to really force myself to do so - even water had a terrible taste for me. I also tried to walk on my treadmill 30 minutes every day as I was told that it would help processing chemo out of my system. I also had Herceptin which I finished a month ago and now my port is gone too. I still have a couple of surgeries ahead of me, but I'm doing fairly well. I know it's a slogan, but it helped me a lot to remember that "this too shall pass".

    Best wishes to all of you, hang in there and lean on each other. This message board is a great platform to have.

    BB

    (Edited to correct spelling.)


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  • 786tex
    786tex Member Posts: 42
    edited March 2016

    I will have to try that. I came down with severe "flu-like" reaction the night I had my first chemo (Wednesday). Not being able to sleep from the steroids didn't help either. I did get up and go to work for a few hours (not sure why) I started to feel better later the second day when I was finally able to get some sleep. The Nuestra kept me up last night running to the bathroom and although I feel a bit better today, I am still somewhat out of it and my energy is low. I am hoping I am over the worst of it. I am getting Adriamycin and Cytoxan for now. Does anyone know if the Herceptin, Taxotere regimen is as bad since I will be on that for a year after I finish 4 treatments of the current round?

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  • HolaSandy
    HolaSandy Member Posts: 85
    edited March 2016

    Welcome to all our new ladies!

    Thank you for the suggestion MelGirl for the heating pad. I will for sure try that.

    My chemo has been bumped to Friday of next week (the 11th) because my egg retrieval won't happen until Tuesday. I'm of course anxious to get going with everything. But at the same time, I still get to feel "normal" for a couple days longer and that's ok too.

    Christina, our diagnoses sound similar at this point. I don't know stage yet and I'm freaking out about possible spread. I had my MRI, CT, and bone scan this week and after the bone scan, the tech asked me if I had any bone pain and said she was going to ask the Dr if he needed any more pictures after the scan was done (he didn't). That totally got me thinking and now I am really scared. I will be doing neoadjuvant FEC-D for 8 cycles. On a positive note, I had a derma appt and was convinced that some of my moles were cancerous but was cleared. I'm celebrating that small victory today.

    Also prepping for my wedding tomorrow! Can't wait! Much love to you beautiful women!

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  • WannaCruize
    WannaCruize Member Posts: 66
    edited March 2016

    NancyHB, you might want to check with your MO about taking Aleve. I was told that the only OTC pain meds I should take are Tylenol, no aspirin, ibuprofen or NAIDS. I believe those other can make the low blood counts and/or low platelets from chemo worse.

    Welcome to al the other ladies joining us here. HolaSandy, congratulations on your wedding tomorrow.

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  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    Holasandy, congrats on your wedding! Have fun, enjoy 💕💕

    My chemo was postponed a day or two as well due to a delay in getting the auth from my insurance. The nurse called me to tell me we might need to wait a day or so and I almost had a meltdown. I feel like I am structuring my woke life around this and the idea of preparing for it, then waiting felt so so frustrating! I'm hoping to get it sorted out quickly and gets with things.

    WannaCruize, my nurse said Aleve and Advil are fine just stay away from actual Aspirin. I asked her this specifically bc I had the same concerns as you...

    Opting not to use the cold caps and mits, mostly bc they seem expensive and I don't think I'll have time to order them all in time, but hoping I won't regret that choice!

    Love and light to everyone ...

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  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    I found a wig. I like it. Who knew they would be so expensive. The salon I bought it from said they would take my hair down and trim and fit the wig when I am ready. I live a ways away from them and wonder when to make the appointment for. I think most people say 14 days in they started losing their hair. I wonder if I should buzz it 10 days after my treatment? Any thoughts from those with experience? What did you do? Is there any benefit to buzzing it prior to it falling out or waiting till after I falls out

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  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    Hi Jonesy -I was asking lots of questions about this too!

    Right now I have shoulder length hair, but am cutting it pixie short day after chemo starts. Then planning on shaving it two weeks later.

    My chemo nurse today said that when the hair starts to fall out, some people feel uncomfortable burning and tingling and that the head shaving tends to relieve that discomfort

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    Day 1 done. I feel fantastic and had no issues during infusion. Yay!

    To anyone who is on a taxane (Taxol, Taxatere) and is interested in the cold mitts: I have a "cold pack hack" for hands and feet that I will post for you this weekend with photos and description. It will not cost you $400 by any stretch of the imagination so it should be accessible to all. I tried it today and I'll give you the details.

    Hugs, BK

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  • Logang
    Logang Member Posts: 421
    edited March 2016

    I had my port put in today. I already have significant bruising. The procedure went well. I am having pain up around my collarbone and neck, but I took some ibuprofen and a flexeril.

    I plan to get my long, thick hair cut into a short style tomorrow. Not sure if I will be emotional or not. I have never cut my hair above shoulder length.

    I did confirm that my 1st round of AC will be on the 11th.

    Good luck to everyone! I plan to enjoy this weekend. I go back to work on Monday exactly 6 weeks from my right mastectomy and lymph node removal.

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  • Phillipians4
    Phillipians4 Member Posts: 21
    edited March 2016

    It looks like I will be joining the club that nobody wants to join. My first treatment is scheduled for March 17th. I will be doing a Clinical Trail that includes Cytotoxan and Taxol every 2 weeks for 12 weeks (6 treatments). I am not nervous over losing my hair but more so over possible neuropathy and bone pain

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    Sex & Chemo question:

    There's been a lot of talk about what chemotherapy can do to our mucus membranes. All other sex considerations aside (pregnancy, disease, infection due to low immunity), is there any risk to our partners coming into contact with some of the chemicals present in our bodily excretion during sexual contact? I'm going to ask my MO next week but thought I'd throw it out here. I'm thinking that if I'm rinsing my urine and other matter off of me to protect my own self, then should I protect my male partner with a condom, for example? My partner and I had a really humorous conversation about this last night and at one point I was thinking haven't there been some untouchable, sexy heroines in movies like this where the skin burns on contact? It was a very positive discussion that will definitely be brought up at the doctor.

    I'm a straight female so asking about this kind of sex; I'm sure it's valid question for all sexual situations.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited March 2016

    BKgamegirl, There is a time period after infusion where they tell you to use a condom to protect your partner from the meds...thinking it was 24-48 hours or so.

    Along those lines, everyone's experience seems to be different, but what the chemo does to your vaginal and vulvur area can make sex extremely painful. The meds will push you into chemopause pretty quickly as well, so that means sudden dryness and possible shrinkage/tightening. A high quality lubricant is a must once that happens, but it may still be quite painful. I was so shell shocked from diagnosis that sex was the farthest thing from my mind...by the time we tried, about 6 weeks after first chemo, it was an absolutely horrendous experience. Some other women report that by using moisturizers/ lubricants and staying active right from the start they experience less pain. The general idea is to keep the muscles from atrophying and discourage tissue shrinkage. In other words, use it or lose it.

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  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    Lol, DizzParkMom. My husband will be glad to hear that advice.

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  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    Kristin, have an awesome wedding day!

    Heidi, sorry about the delay. Breathe and it will all happen soon enough. I have been very frustrated with delays etc as well.

    Chin up ladies. I am getting the jitters now. Monday is my first treatment. I feel like this weekend is the last supper or something. Very odd. Visiting some friends and trying to pretend everything is normal . . . But inside it is not.

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  • Skittlegirl
    Skittlegirl Member Posts: 428
    edited March 2016

    My chemo nurse said to use a condom if we had sex within 72 hours of infusion.

    As for hair, I did a pixie cut on day 9 after my first infusion. Mainly as a transition step for my kids. Day 14 was a lot of shedding. Day 15 was when I could tug sections of hair out. So DH buzzed me with clippers with a #2. I was told not to completely shave it due to the chance of an in-grown hair getting infected. Since I didn't got smooth bald, it's probably good that I didn't completely shave it.

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  • Arobedw
    Arobedw Member Posts: 5
    edited March 2016

    Began chemo March 3, TCHP. Bone pain after the shot using Claritin to help with pain.Otherwise doing well. Read where eating ice chips during infusion helps with avoidance of mouth sores.

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  • Tamiwin
    Tamiwin Member Posts: 2
    edited March 2016

    Add me to the list, my first treatment was yesterday, 3/4/16. Terrible headache once I got home and 100mg of ibuprofen didn't cut it. Ate a good dinner but that didn't help either. Took some anti nausea before going to bed, it worked but I was still up at 2:30.

    Took my steroids this morning and have an on body injector for Neulasta, that will happen tonight about 8 so we'll see.

    Questioning now about my hair, I understand I've probably only have about two weeks before it comes out. I have a full, long mane of natural Strawberry blonde hair that I'm known for so this is incredibly difficult for me. I know there's a slim chance I may not lose it but it sounds almost definite. I'm considering cutting it super short, leaving a Mohawk type flop on top and coloring it bright pink. Why not?? Probably my only chance to make this part fun. I have 3 pink wigs I've bought, decided early on I can't match my color and style so why not be silly?

    My concern is this: do I go ahead and cut/color it now? Is the chance more than minimal that it won't fall out?

    I hate to shear it all down then it doesn't fall out!

    Thank you ladies,

    Tami

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  • BKGameGirl
    BKGameGirl Member Posts: 38
    edited March 2016

    Tami -- someone just posted about having a wig made with their own hair. So...if that might be an option for you, look into it if it is a strong part of your identity, and then maybe have some funky fun with your short hair as you recognize?

    Right now, I'm doing a pixie cut this week (on my Day 4) for timing purposes only and to also make the haircut expense somewhat worth it (next week is my birthday and I don't want to cut my hair on my birthday weekend!) I'm going to then wait and see on the shedding and extent, and move to a long buzz as soon as I see the need. I have adorable hats from a millinery on order from England, and I'll be in a wig shop next week for a consult. I was freaking, but now that I have a plan it's starting to feel better.

    I'm having a make-up lesson from a LGFB consultant this week for eyebrows & gentle skin care during chemo -- super excited!!

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  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    BKGamegirl: two things - 1) I'm getting pixie cut too, in a few days! Kind of excited, in s weird way. 2) OMG no one told me about rinsing the pee!? Sounds important! What did I miss about this?

    Philipians4: welcome! Sorry you have to be here, but sending you lots of support ;)

    Happy Saturday everyone

    Xo


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