Starting Chemo September 2015; join us!
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Oh cajun I do miss my red wine, but it doesn't even taste good now.
ShannonCann - Did you have Neulasta after your chemo? My worst side effects came days 5-7 after chemo and worse after 2nd infusion. Apparently every side effect is different each time. Do ask MO and nurse how to best deal with each.
Jabe i agree, your wig is so natural! And a make-over is good as it helps to feel less pale.
Happy Happy belated birthday CarolinaAmy!! Hope you were able to celebrate.
Annie so sorry you have had trouble, Harry Potter can make you feel better for sure1
Oh teacherhiker sounds like a terrrible time for you, i hope adjustments can be made in your recipe to avoid the trips to ER. Hugs!
Scotland your short hair is adorable, you look younger and bright eyed. I found when I did the short cut like yours my family liked it better than my longer hair and made me promise to keep it short when it grows back! so glad you are embracing this positively.
southerncharm how wonderful of you to post the pics of your hair loss. although scary, we CAN and WiLL get through this. it's hair it grows back! I can't wait to see what pics we all post when we start growing hair!
Sleep well everyone (Benedryl does help) and may next week bring us all strength, courage and a positive outlook to get through this difficult time. i'm so glad you all are out there with me:)))
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I figure that too and then I fear its just going to floor me and hand my ass right back to me, yelling, "nobody escapes the red devil!!!"
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southerncharm do you sew or know anyone who does? I bought a McCalls pattern 4116 with 7 different versions of turbans that are very easy to sew. I have made several sleep caps out of soft cotton. They don't slide off and are warm but don't make your head sweat. I am going to make several more in different colors as when i am home I find them the most comfortable to wear. Plus I wash them every couple of days. You can also make them out of fleece for a warmer cover. I will post some pics.
Don't be afraid to ask a friend to make one for you! Or I will happily make you one too!
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Maybe I have been in the dark but i was just reading the side effects for my next round of treatments (12 weekly) after my dose-dense which will include Herceptin, Perjeta and Taxol and learned that perjeta causes hair loss! So I thought I would start seeing hair growth mid Nov but now it looks like Feb befor hair come back! Yikes it's going to be a cold winter. Going to buy fleece tomorrow to make some warm turbans
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Hi Cajun
I think you'll be right now I did ok first round and im on day 3 of second round. SE appear similar to first round. Try not to worry about what tomorrow may bring make the most of the good days, hopefully they'll be lots more good days than bad. Really happy to hear your coping ok.
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Southern- once your hair is buzzed down to the scalp, the hairs starts growing back and your head is like Velcro. My hats stay on at night now. I am going to quit shaving my head. I prefer the smooth feel but if it wants to grow I will let it. I have 1 treatment left so who knows what will happen.0
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Update on me: back to the ER today (third time this week). I can't get through this. I feel like death warmed over.
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I decided to spruce up a hat with some bling, I think I'll do more, I like it. 😊
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oh no, teacherhikermom! What else can they do to help you? I'm so sorry you are having such a rough time 😳
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Teacherhikermom, you are getting through it, being able to put a simple post on here to keep us up to date proves that as shitty as you feel, as hard as it is, you are getting through it. I wish I could help in some way! I know you have a home nurse and your MO is rethinking your plan and I'm hoping that you get some improvement soon. We are all thinking of you, I'm sending you as much cyberstrength as I can. Curl up in bed, try to get some rest....
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I finally ordered a wig today. I doubt it will get here before hair starts jumping ship. I am so behind. I don't have anything yet to cover up. I hope I like the wig so I don't need to send it back. I wanted to go crazy and do something fun but one step at a time. I didn't match it quite to my hair. I don't care if people know. I just want to have the option to tell them. I am concerned with staying warm too. I live in interior Alaska and we get to 40 below are times during the winter. I hope I can be as brave and confident as you ladies when I have to buzz it off. I am trying to prepare my almost 2 year old so she doesn't freak out when it happens.
I came across a you tube channel and Facebook page of this women who chronicled some of her journey. She showed the video of her cutting and buzzing off her own hair. It was sad and empowering at the same time. Her channel a called "My Breast Choice".
My biggest side effect that bothered me was horrible headaches for days #3-#8 (present). I didn't expect that so I was thrown off. Nurse thought it was Aloxi since that is a side effect. I found that it is also a possible side effect from Neulasta. I hate to change up the nausea meds since they seemed to work but I also would love to avoid this if possible.
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Did anybody MO say anything about drinking coffee during chemo? Mine hasn't said much about anything and I would be clueless without you ladies. I am generally a coffee drinker but a fancy one is sounding pretty good right now.
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cajunqueen: I'm struggling with borderline underweight --- way before I found my breast lump, I lost 4kg over the summer, because pain meds for my chronic neck and back problems caused constant indigestion despite stomach meds, and food hurt. Since surgery I've been trying to push protein drinks and eggs and stuff like that. So funny --- I used to be a "chocolate addict", now it's just tastes "meh"
. Felt so proud to have put on a whole kg since first chemo dose, but lost part of it over the past couple days along with all the dexamethasone fluid (2. Herceptin/Taxotere was Thurs 1.10.). 0 -
There's a coffee machine in the Infusion Clinic, also tea and hot chocolate available, and noone has forbidden coffee to me, TFoxy20
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Rosieo:Thanks for your reassuring post about your lymfedema treatment, Rosieo. At the moment my chest wall is worse than my arm/hand, and luckily it's not as bad today now that the dexamethasone fluid retention is gone. But both areas hurt
I'm a bit worried to have to wait 3 weeks for the lymfedema therapist appointment (9 weeks post-op), but she's the best in the area. Until then I will alternate with the sleeve (that swells my hand, even with the glove) and just the glove, and when I can stand it (hurts and doesn't fit right) the thick stiff post-op Tram belt with a folded up towel under it at the scar/edema area when I can stand it --- helps the pain some, and seems to make the area look less like it's ready to explode
I have to admit I spent most of a day sobbing when the not-very-helpful hospital physical therapist confirmed the diagnosis --- felt like the end of the world --- I am so dependent on my right arm because of chronic nerve damage in my left from neck problems, and I fear losing my physical independence with this plus the fingertip numbness from the Taxotere --- but now that it's been a few days, it's a tiny bit easier to remember that the main issue is treating this cancer ---- "minor" side effects issues have to take a back seat right now
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I've been up since 4am. 😣 I asked about Ativan since it seems to be pretty standard, but I was told to ask my PCM for it since I shouldn't need it. "Do your 4-7-8 breathing." Um. I'm not awake due to anxiety; I'm just wide awake! Argh.
Benadryl isn't enough for this and I don't want to keep using the Klonopin my PCM gave me when this all started.
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octogirl, another sister asked the other day about shortening that first post so it's easier to get to the newer threads. Would that be possible? We could put the list and such in a reply and the first post could just what number it is?
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good morning ladies. Wow our board moves fast. So much to catch up on. Well it's day 4 post AC #3 for me and its hit me hard. I felt like crap on a stick fri and sat. The neulesta bone pain was awful this time. It felt like I got kicked by a horse. Spent all day fri on the couch and part of sat. Pain meds finally working sat. Hope today is better. My old man buzz is still here and thinning with bald patches. I look so pale despite makeup. And the fogginess and spacey feeling in my head sucks. Plus the fur sweater that is on my tongue. I miss food. Nothing tastes good. Ok sorry to have my complain fest but I'm done now. I just had to get it out.
Feel better gals and hang in there.
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Annie , I don't post much but your mammograms were just too hilarious. I showed them to my husband and he got a good chuckle. I admire your spirit, spunk and sense of humor. You have a darned good attitude.
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All, I am sorry, but I can't shorten the list at least today, unless I just take all the names out. I don't have the technical skills, and on top of that, this has been my worse few days of SEs, one of which is that I cannot look at a computer screen for more than a few seconds at a time without getting very sick. I have pre-existing vision issues and chemo is making them worse, apparently. It is all I can do the read the posts, with lots of breaks. I am hesitant to edit the post to just remove names since people asked to be included. Perhaps someone who is doing well, if they are concerned, can contact the moderators and ask for a suggestion? I'd like to help, but sorry, I can't do it today.. Hugs to all
Octogirl
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I'm sorry for everyone feeling like crap. I hope you're ok techerhikermom! I've been scared about having an ER trip but so far so good.
I drink coffee like a religion and all the docs said it was fine.
I kinda wish I had some weight loss. That would be a chubby girl dream of a side effect, but alas I have gained a few pounds. Ice cream and sweet coffee are the only stuff that has any taste. Oh and spaghettios. So see not a swell weight loss plan.
My port incision is breaking out into a rash from the glue. I'm allergic to tape and sterile strips so he thought glue would work. Ever had a rash underneath glue? Ya me neither. I'll have to go get some help tomorrow.
Tomorrow is round 2 for me but with the added Adriamycin and no taxotere. So it's all new again with regards to what I should expect for SEs. This port hurts bad so I'm expecting some lovely nurse torture. It just seems to escalate each week and I'm emotionally beat down. Oh and both my kids are sick with fever and vomiting. So yay!
I hope everyone is getting through this nasty weather. Winter is settling in.
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Annie..sorry its so tough for you. It has to get better, I believe that. Hang in there.
My head hurts from wearing caps so I tried making a turban from an old soft tshirt and its heaven. Just cut it off below the arm holes and use the bottom part. There is enough fabric to twist it around your head twice, with the fabric flap pulled across the top of the head to tuck in behind. Its so soft and you can adjust the rim enough to lay flat so you can sleep on it. I recommend giving it a try..its free! The bigger the tshirt size, the more fabric there is to work with so choose according to the size of your noggin
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DL you look adorable!
Shannon: I too started to feel better at day 9. The key I think was hydration and I did eventually ask for IV hydration as I was having trouble getting myself enough to drink. Once I did that it turned around.
Annie: I really hope you feel better. Sending strength and gentle hugs
As for sleep, klonipin (anti-anxiety) is my friend when sleep has been a problem.
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btw, if anyone has a tween. I recommend reading with them the book "the year my mom was bald". I read it with my almost 10 year old daughter and she really liked it. It wasn't easy but it's excellent
And...husband ran a 5k for BC research today and came in 1st place in his age category! Hasn't medaled in years. Think he was inspired?
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Today I get my head buzzed. My hair started shedding on Day 12 and by Day 18 it was coming out fast. Filled the sink with hair with just a few comb throughs. The texture and feeling of it changed on Day 18 as well. Matted and limp. Just gross. I've also got the sunburned head feeling,. Not painful, thankfully. I really, really don't want to go through this part of the "journey", but seeing all you beautiful ladies without your hair is inspiring and gives me hope that I too can do this.
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katie..we all have been there. Once its done and you get used to the look can move past the initial shock and grief. Yes, you grieve the loss of your hair so own it and go through all the loss phases. It's not silly, it's not that you're superficial and vain. It's a very visible indicator of this terrible disease. Hopefully you are prepared with whatever you choose to use, whether its wigs, hats, scarves or all of them. I found that covering up right away made it easier to take. Its been almost a week for me and today I'm finally at ease enough that I'm going bare headed in the house. I have my cap handy though in case anyone drops by.
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Thanks Lindy! I do have a wig and a nice cap on the way.
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Katie: you and I are on the exact same schedule (9/16 with TC). I buzzed yesterday. Had two friends with me to sob into their arms. They then took me to get a free makeup "consult" at nordstroms. I don't usually wear makeup but it definitely helped. The evening was hard--I was grumpy and really, really sad and mad. This morning I'm doing much better. It's frickin hard though! You doing round two this Wednesday also
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Tfoxy- I drink coffee everyday. It helps with the constipation. For me anyway. My biggest side effect has been headaches as well but I have just toughed them out. I don't have the naseau or vomiting or diarrhea so I will take the headache. My MO didn't want to change things up due to the fact that my other side effects have been so well controlled.
It seems many of you have serious side effects from the Neulasta. I do not get these shots which I am thankful for. I have been able to maintain my own WBC counts. I do start and antibiotic on day 5 for 1 week. I take it as a prophylactic and that seems to have kept my healthy thus far. Day 4 into treatment 3 and I am doing good. Can't wait to ring the bell in a few weeks.
Ladies keep strong....accept help when offered...drugs are your friend right now. Sending peace and love from cold and rainy Canada....
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