August 2015 Chemo Group
Comments
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LOL yes, I too want to eat ALL OF THE THINGS!!
Michelle, I'm pretty awful at girly things, but I figured out how to tie a scarf & am quite impressed with myself.
Having said that, I don't know how to explain my method (and I wouldn't exactly call it chic). Let's see...I take a regular scarf (oblong) and drape it over my head so it sits on my forehead all nice like. Then I gather the long ends behind the nape of my neck and twist one over the other. I pull those ends forward to the front of my head and then twist them again over each other at the top (or side) of my forehead. Then I take the ends and go back one more time and knot them at the base of my neck. Was that any help at all? 
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Michelle, I've had really good luck using a homeopathic product called Calms Forte for sleep. You can get it at nearly any natural foods store or online. It's made by Hylands. No side effects, completely natural, oncologist (mine, anyway) approved.
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Ugh - on day 5 post chemo I had a piece of bacon. It was my son's 4th birthday so I made bacon and pancakes for his breakfast and thought, hey I feel ok enough to eat some bacon.
BAD IDEA. Way too rich/fatty.
Considering I was sustaining on apple juice and toast and maybe chicken soup prior to, that was a little too ambitious of me!
@JenPam - I understood your instructions! Will try
@ KateB79 - I'll take a look for those Calms Forte. Although - with my mind racing this is how I remembered to log back into this place so at least there was a benefit there!!
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JenPam, you're cracking me up.
Michelle, I was right there a week or so ago. Take it easy. I learned the hard way, that's for sure. . . Ate a big old bowl of pasta, chicken, and pesto. . . Ooof.
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For those that need to get their hair cut or kept up after losing it, I just had a really good experience at Great Clips. I got mine cut today as I will be starting chemo tomorrow and I had a lot and it was very thick. They have a program called Clips for Kindness and if you tell them you are doing chemo, they will cut your hair for free during the time you are undergoing tx. I went from about 9 inches to 1/2 to 1 inch hair on my head. Definitely something that I am getting used too.
@kate- Have you asked about taking diflucan (pill form for yeast infections). I know that it is in your mouth, but I would think it might help.
Welcome to the newer newbies. Sorry you have to be here, but there is lots of support here.
Question, what is everyone taking with them to tx? I know my phone, tablet, charger and snacks, but when I went to my Look Good, Feel Better workshop, I was seeing people with duffle bags that looked full. Just curious to make sure I am not forgetting something. Will be packing my bag today since it will be a rush in the morning with getting the girls off to school and my mil is picking my husband and I up to take us because he has an appt too. It will be crazy tomorrow.
@michelle, you could try benedryl? I know it knocks me out, but I know some that it wires them up too.
@Jen, don't say you are sick of biotene.
I am counting on it to get me through. I have heard that the baking soda, salt water rinse can help with the metallic taste.0 -
We need a like button like on facebook. JenPam, LOVE the pic.
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ooookay. A little too much hair came out in the shower today. Not clumps but noticeably more (I have dark, to the middle of my back length hair). I think I need to cut it today.....
Probably do it when the kids get home? Maybe after my 1 year old goes to bed, but my 4 year old is still awake so he can watch.
Bah.
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tazbear - I used my tablet, phone, water bottle and snacks, and hand sanitizer. I also carried my massive cancer binder, mostly because I met with my MO right before chemo and I wanted it handy. I did not bring a blanket in with me. They provided warm blankets during treatment and I didn't want my blankets from home getting all germy. The volunteer would refill my bottle with water and ice as I needed it.
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Thanks vicki. I feel like I'm forgetting something.
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The pics really made my day! It was a long, but good, day and tomorrow begins cycle 2.
I took too much to my first infusion--blanket, pillow, Bible Study and Bible, book for fun, non-fiction book, crochet, snacks, two bottles of ice water, phone, charger, iPad, charger, cancer notebook, and more stuff I am probably forgetting. I am not a morning person so I used my blanket and pillow most of the morning napping. I read some in the afternoon, but took a good amount of time to zone out on FB. I was there 7 1/2 hours. I haven't taken much to my short sessions--30 minute Herceptin infusions--my mom keeps me entertained that long. Tomorrow I will take fewer books--they make for heavy bags--although I bought a mandala coloring book at the recommendation of my therapist. Probably will leave the tablet home as well.
I take melatonin to help me sleep, 5mg. It works great for me.0 -
thanks musogirl. Luckily I have enough books on my tablet, it will make my bag light.
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I took way too much to my first (7-hour!) infusion, too. Next time, it'll be: iPad, water bottle, book, snacks.
Update: I saw the NP today and she's not worried about my bum. I also asked her about the white count; she said they don't like to use Neulasta for TCHP because "in women my age, counts typically rebound on their own." I hope that's the case and that we never have to hold treatment!
I'm shedding. Hope the ol' hair stays at shedding (as opposed to "clumps") until Friday, when I'm having it buzzed.
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Port placed today. All went well. Shoulder and neck a bit sore, but manageable. This is me waiting to go in
I went to headcovers.com and ordered some nice caps. They have a large selection of lovely scarves And hats as well. Chemo class is tomorrow, then tx on Monday.
🎼 Anticipation...Anticipation, it's making me wait! 🎶
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@Michelle888, here's where I get to plug my favorite sleep aid: melatonin! I take a 10mg timed release melatonin every night. If I take it on time, I will eventually go to sleep, as long as I don't push myself to stay up past midnight, in which case I will usually be up until 2AM. That's a habit of longstanding, and probably part of the reason my body allowed the cancer to grow ... I recently read somewhere that prime time for regenerating healthy cells is from 11PM to 1AM, which for many years I have treated as prime time for work! (I'm a programmer, and programmers get like that. It's kind of part of the ethos somehow.)
@KateB, I'm not using Biotene, mostly because I was too cheap to spring for it. I bought Tom's of Maine mouthwash because I've used it before and I know it's very gentle. And it has aloe vera in it, which I thought might be helpful. For what it's worth, neither my MO doctor nor nurses have made any of these dietary and mouth care recommendations to me, maybe because my regimen is weekly low-dose, or there are different drugs? But side effect wise, at least on the digestive front, I'm right there with you all.
One thing that some people have mentioned, but not everyone, is L-glutamate. I started it the same day I started chemo. It's supposed to help me avoid peripheral neuropathy. I already have some from other causes, so I don't want more. My MO said I could keep my hands and feet cool - iced isn't necessary, he said - but he also said he thinks the L-glutamate is adequate and chilling the hands and feet isn't needed if you're using it. I understand there is no scientific consensus about this, though, so caveat emptor.
As for head coverings, there's a website by the same name (search for it, I don't know if we can post links in these discussions). They have scarves, hats, and wigs, including super-expensive monofilament ones that look very realistic, and even ... wait for it ... stick-on eyebrows! I'm so very tempted to buy those, just in case my eyebrows fall out. I have pretty dark, prominent eyebrows and I think I'd look really silly without anything above my eyes. Anybody remember The Man Who Fell to Earth? I could be him for Halloween ... or one of the characters from Avatar if I wanted to paint myself blue.
Speaking of avatars ... At some point I'll change my avatar on here so I am showing my face. I've been kind of shy, strangely, about the idea of someone I know in person "finding" me here by my photo. As if it would matter, since if they were hanging out here they'd probably be a good person for me to talk to!
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KateB, at my education session yesterday, I asked if it was ok for me to take probiotics and the nurse was all for it. She said it is very helpful to prevent and help with thrush. If you aren't already taking them, maybe you could ask about that.
Tazbear, good luck tomorrow! I'll be thinking of you and wishing us both (and everyone) no yucky side effects. I'm not taking too much. My phone, iPad and Kindle, my Hydroflask (water bottle) and maybe a fiber bar or something. They have snacks, drinks, warm blankets and pillows, so I don't think I'll need much.
Great photo, Bunnybumps! You look like you are ready to kick cancer in the #$#.
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Hello ladies - great pics - thanks for sharing! I am going to looking into some of the sleep aids suggested. The sleep disruption is brutal on me. I go back to work next week so need to do something before next treatment or I am going to be a walking zombie in my classroom. Othewise - feeling pretty good these last few days. Still exercising throughout and it really makes me feel so much better - perhaps it is all mental but I think there is something to sweating out all the chemicals.
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michelle888… I know what you said about those headcover! I am doing Skull caps (Spanklingearth.com I read about it on the head cover thread here) & cotton fisherman hat for regular day & regular straw hat for church
lovelifeBR what is TNBC? The nurse took one look on my veins before the first round, & text the dr to put on order for the picc line. It's working very well. Have to go in to change the sterile dressing weekly. & they taught he how to flush it with saline everyday at home. I think there are few of us are on TC, & couple are doing it on the same day. (I had first one 7/27, then 8/17. Next is 9/7, last one 9/28)
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Musogirl's suggestion of taking melatonin for insomnia is really interesting. The steroid makes you awake in the night because it messes up your circadian rhythms so melatonin should work in theory! Will try it tonight. Has anyone else tried it?
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I am going to try it tonight as well MsBrompton. Hopefully will get some zzzzs!
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Hey Ladies!
I forgot to mention that I AM allowed to take my probiotic, so I'm back on it as of yesterday. I'm going to swish swallow the magic mouthwash for the next week; I see the NP again next Thursday before my infusion. If the thrush isn't 100% gone (it's about 85% gone) by then, I'll switch to diflucan. Fingers crossed that I don't have to; I don't know why it creeps me out.
She wrote me a script for low-dose lorazepam to take if I have another crash during the next cycle. They also cut the dexamethasone in half--instead of 8mg a day, I'll take 4mg. I'm very happy with two things: one, they listen to me and want me to feel ask okay as possible; two, I think taking less of the dex will help me to avoid some of the problems I encountered last time. I've read that steroids (as opposed to chemo) can cause thrush, and I'm certain that it was the dex that caused the anxiety. Fingers crossed on that front, too!
Melatonin is a great call--some studies show that it's good for cancer prevention, too. I know we're a little late for that, but it really can help to regulate sleep cycles. The trick is to take it at exactly the same time every night, and no later than 10pm. My advice is to start with 1mg (sublingual), and then work your way up. It can cause some morning drowsiness, but that usually clears pretty quickly. My partner, who has PTSD, uses it every night to fall and stay asleep, and to help prevent nightmares. Good stuff.
Mom2aboy, my guess is that they're not especially concerned about mouth stuff because of your regimen. My dentist is the one who recommended the salt water rinse and the Biotene, though I'm all for trying Tom's of Maine (I love their products)! FWIW, I suck on ice chips during my taxotere infusions, as well as keeping my hands and feet cold.
Here's a question from left field: if anyone lives in a state where medical cannabis is legal . . . have you tried it? I live in such a state, and am considering trying edibles (I won't smoke anything at this point in my life) in the evenings following my infusions. . . .
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superius--TNBC is triple negative breast cancer.
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Hi KateB, I'll keep this thread posted on if medical cannabis makes a difference between not having it 1st infusion and generously having it for 2nd infusion (which is happening as I type this...arrg) My state is partly prude- they ok'd gay marriage but not medical weed! (So I go where it is legal thanks to out of state hippie friends. A good, fast boat makes all the difference!)
It'll be interesting to see if helps. I'm not a smoker, but took the medical weed in that form along with medicinal hemp oil orally. Haven't played with, ehem, mean green since those college days...feel like such a rebel now. Have a strange urge to play some reggae...
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Birdysmom, you crack me up. I'm planning to use the CBD oil or tincture for the next five rounds; I've done some research, and it looks really promising for many things, including taxotere-induced neuropathy. My MO is a-okay with it as long as I don't smoke it. Her take is that, if it works to ameliorate SEs, she's all for it. I'm all for it, too. I figure it beats an Ativan habit.
It's definitely a return to my rebellious adolescence. In fact, this whole thing is: emotional roller-coaster, crazy hair, cannabis. I guess I'm playing on the 90s nostalgia that seems so popular these days.
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For the poster asking about fashionable head scarves, this is my favorite site! Tons of fun headwear that don't make me feel "sick" when I wear them, just fancy: http://chemofashionscarf.com/
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Thanks everyone for the sleeping and head covering info. I will need to look into it as my hair is GONE! I wasn't liking how much was falling out (it wasn't much, but more than usual), and I was hypersensitive to seeing strands on my shoulders (which may or may not have been normal).
I was ok through the whole thing. I kind of squealed especially when H was hacking off the pigtails omg the sound of hair being cut was redonk. I did tear up once, when I looked at my 4 yo son's face. He looked scared and I asked him and he said no he wasn't scared (I've been prepping him for a month about it) and I think he was a little shocked or something. This morning he was totally fine! He wanted to touch it. We were worried my other son, as he's under 2 (he was sleeping when we did it last night) and we thought he may freak out and this morning he saw me and didn't even flinch. He looked at my head for a few seconds and kept eating his Cheerios.
Feels strange to not have hair after so long (and long hair all my life) but hey. It's just hair. The hair will be donated to be made into a wig for others losing their hair. I do need H to go over it again with the clippers. My hair still had a part so it wasn't easy to buzz. Have to let it relax for a while then re buzz!A few pics - the first is from a family photoshoot we did 3 weeks ago. Thought we would get an updated photo prior to chemo. The buzz pic is from this morning. As you can see it needs some work.
This is the wig that I got last week. Jon Renau Lola. Friend of a friend that has Alopecia recommended the brand...we'll see how it works out.
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Michelle, you look great! You could totally rock that buzz cut if you wanted to.
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Michelle: you are stunning in every photo!
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Michelle, you look fantastic. Love the short hair.
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Hi gals, I am on day 3 past my first infusion and doing alright. Just feel a little off and get little shocks of pain here or there and i pretty much sleep all day till about 2 ish. My most concerning side effect is my vision. It seems hazy. Blurry, Which was an issue and i have glasses for it but it definitely worse now and I also will see dots at times. Anyone have experience with this? Anything to take for it for prevention? Thanks, plugging along here...
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