Anyone starting chemo August 2016?
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I'm just about to drift off to sleep when this alarm snaps me out of it. I'm looking all over the place trying to find where it's coming from! Well DUH! It was my Nulasta pod going off! Now I'll sit here for the next hour listening to it click and pump my dose into my arm. Then I'll have hubby remove the alien until next time 😜
Dara, your right, it wasn't fireheart that mentioned the list of Ladies and dates it was Karley59. I'm happy to hear your mouth issues are clearing up. Yay for taste buds!
Karley59, sorry for the mix up of names and dates! I'll PM my list to anyone who wants it, just let me know :-)
Jiffrig, I must have missed your start date somewhere along the line. I know you said you have your second one coming up soon. I have the whiskers too but mine are hanging on for dear life!
Welcome Sherri, Ajbclan, Sweetrain and My3rosebuds. Sorry your here but glad you joined us!
Fireheart, I love the mohawk! You're stylin now!
Hopefloats, YAY! First infusion down. I hope your SEs are minimal and I'll be praying they stay that way!
MFabella, thank you for your hair idea. It makes perfect sense. I have an on going video my hubby is doing for me. I've decided to let this BC take its course and document it for all my family members. I'm praying nonstop that none of them have to go thru this but they'll have my experience to look back on.
My3rosebuds, I can't seem to find your original post either. Hhhmmmm
I have my breathing set with the click of my Nulasta pod, I may be able to sleep through it after all 👍💤
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Hope you got some rest, Lori.
Great photos, Fireheart.
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VLH, thank you so much. Did you get a start date and I missed it? I have you on my list but no date for you. I'm sorry if I missed it :-(
BBL
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Hi ladies. I've been reading all these posts and decided this is such a great support group that I want to be a part of it. I have my first treatment on 8/24. I'll have 4 rounds of A/C and then taxol once a week for 12 weeks. I had my port put in on Tuesday and it's not really bothering me at all, which I'm happy about. I'm still learning all the lingo lol. You are all such great inspiration!
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WenchLori - I actually did suggest a list. Maybe there are a few of us who did. If you already have one, I'd love for you to PM it to me. Glad you got to sleep like the dead at least one night. I haven't had too many of those nights lately. Darn steroid-induced insomnia. Not to mention needing to rid myself of all the hydration throughout the day.
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I had my second infusion on Thursday. Normally on Wednesdays, but they couldn't fit me in. Next is August 31. Everything went off without a hitch. Hope this keeps up. Did not need extra nausea meds after first nights dose so no constipation, yeah! My face did get hot and red this time yesterday and today, but I hear that's steroids. Having luck so far with cold capping, it's a pain to do but have not lost any hair (yet, anyway!), makes me feel more "normal" but would love to be able to wash it more. Love pulling that Neulasta pod off! One less "thing" to deal with.
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so excited.... Found a food that tastes ok (everything so far has tasted like metal and was awful).., cubes of watermelon!!
At least I'm getting fibre and water lol.
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Ladies, look what I found: Three Lollies will send those currently in treatment for breast cancer, a FREE box of their all natural, soothing Queasy Pops or Drops to help ease the nausea and dry mouth often caused by chemo. Request one at info@threelollies.com and tell them breastcancerfreebies sent you.
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Hopefloats, glad you found something that tastes good!
xoxoMichelle
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Thanks MFabella! I remember hearing about these but forgot when I started the chemo. I'll request a free box.
Lori, this time around I'm going to use the neulasta pod. Last time I had to drive all the way to the hospital for the injection and really thought the pod sounded so much better! Although it's weird to think that it takes an hour to push the meds in through the pod. I just got a regular old injection and that was it. They did make me sit there for a few minutes to be sure I didn't react, so maybe that's the safeguard with the pod.
Well, my hair is really doming out in handfuls! I thought it would take till next week, but day 10 I started to notice a few wisps and by today when I run my fingers through the back, it's coming out in clumps. I was combing my hair this morning and pulling it out from the comb. My DH looked at me and said "Do you want me to got the glue gun?" :-) I deal with things with humor better than sympathy and he knows me well! I'm trying to hold out till Tuesday and then will go to my hairdresser and have it buzzed.
Lori, I'd love your list if you'll share. Jiffrig, hope the no SEs keeps up. My MO said our reactions shouldn't be any worse after the first dose.
KZ1966, welcome, and glad you decided to jump in with us! (Although sorry you need to be here.) This is a really great support group. It's so helpful to talk about your experiences with people who really know what you're going through.
Hope, it's funny you mentioned watermelon. Yesterday, a neighbor brought over a huge container of cut up seedless watermelon. I've never tasted anything so good. My mouth is still "tender" feeling like I burned it on hot food. That watermelon was ice cold and sweet and juicy! Best thing ever! I did find my taste buds improved after about 5 days, just still feeling sensitive.
Hi to everyone else! Hope your weekend is going gray. Dara
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Hi all,
Glad to find you. This is my 3rd round of chemo now that the little buggers have invaded my left lung. Had an X-ray after first course and the cancer showed it had continued to advance.
X-ray after 2nd course showed no progression not regression. Stable abnormal.
3rd course next 2 weeks then a CT to get a higher resolution view.
Am now in a conversation to stop working as my doc says I likely have a year or less to live.
One day at a time. Thank goodd for you and many close friends.
Love to you all,
Patti
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Lori, I don't have a date yet because the pesky seroma infection didn't respond to the first antibiotic. I plan to attend chemo class Thursday and will see the MO again the following Tuesday. I may be able to get started on some of the tests late next week if healing goes well.
Looks like I'm bumped back to September. I just wish I felt more strongly committed to this path. Ugh!
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welcome Satti- sorry you are going through mets. But so thankful there is no progression this round!
Right now I'm laying with the tv turned up and reminded of how strong we all can be. An iconic band (the tragically hip) from my youth is being live streamed from their final concert all across Canada (and the world via online stream) without interruption and it's so powerful. The lead singer has stage 4 inoperable brain cancer and as a gift back to his fans, toured one last time, with his MO alongside and sharing his music and love to all those of us who used his music as our soundtrack of our late teens and 20's... To see him perform so bravely despite the pain and exhaustion is an inspiration.
It feels as if everyone in Canada has stopped and is listening tonight. Awesome.
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Hopefloats - So glad to hear you are enjoying watermelon. And it's one of the fruits that is high in iron. So it's a win-win. That concert sounds inspirational.
Dara - Hmm...hot gluing you hair...I guess that could work.
If the wax I bought to spike up my mohawk doesn't do the trick, maybe I'll pull out the glue gun.Michelle - Thanks for the info about the lollies. Will have to get some.
Satti - So sorry to hear about your mets. You are right that it is one day at a time. I will be praying that you can make the most of every day you have and find something sweet in every moment.
VLH - Well even if you don't start until September, I hope you'll stay with us in this thread.
Off to try to get a good night's sleep. Hoping my trend of 2 AM wake ups doesn't happen tonight.
Sending love to all!
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Hi ladies ....not able to sleep so far tonight ... I enjoyed going into work Friday for awhile to get things ready for my sub ...kept my mind busy. I felt great and ran errands and went to church yesterday.
Satti ....welcome to our fantastic group
Fireheart43 .. Love your pictures and positive attitude
DaraB ... I will try the Allegra ...I still had quite a bit of pain my oncologist gave me Norco for next time 😬
SweetRain52.. Will keep you in prayer the 25th, I had an IV which worked well, I bought some gel nail polish to help strengthen my nails and keep them nice as long as possible. I don't anyone trying to cut my cuticles or putting my hands under any special lights for now.
Michelle ... I will try and find those Lollie
I had heard watermelon was good so I will get some before my next treatment which isn't till the 30th now. I would love a list of our fusion dates ... I tried writing them all out but got confused after just trying to read back on all the posts ... So if anyone gets a list please let me copy.
Thank you all for just being there ... Wish when I had my bad days last week I could of found you all. I wish I had known I would have a raging yeast infection, diarrhea & bleeding hemorrhoids ... It was such a special time. But one treatment down.
Love & hugs 😘
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I've sent a few private messages for our Chemo start dates. I can add the list here also if it will make it easier for anyone. I don't want to infringe on anyone's privacy.
Just let me know :-)
BBL
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It's now day 2 post chemo and no side effects so far other than dressings are hot on my tongue and I've started getting cold sores but I'm hopeful the meds I'm on will put an end to those. I got about 6 hours of sleep last night but I'll take it any night!
Sending prayers that all of you are doing well with little to no SEs! Hugs to all!
BBL
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Well I think I just figured out what fatigue means. Had a really busy day yesterday - ran errands, cleaned, made a big crockpot dinner, took a 3 mile walk, played board games with my mom, and more. Must mean the steroid was doing its job all day long. Ended up going to bed later than planned, but I was okay with that since I'm finding if I go to bed too early that I'm waking up somewhere around 2 AM unable to go back to sleep.
I planned to go to church this morning and woke before my alarm. Feeding the animals (we have cats & rabbits) and getting a huge glass of water was about all I could do before I flopped back down, turned off the alarm, and zonked out. I really didn't sleep that much longer, but it sure was sound sleep. Guess that's the "sleeping like the dead" WenchLori joked about.
Caligirl - "It was such a special time..." HAHAHAHAHA! You ladies keep me laughing. I can so totally relate to the bleeding hemorrhoids. Only mine were agitated after a bout of constipation. Either way our poor bottoms can't win.
Bought a lifetime supply of hand sanitizer yesterday. Putting pump bottles everywhere I go. Around the house, in the cars, at work, in my purse, in my chemo bag, in my work bag... I don't think I've ever washed or sanitized my hands this much in my life. Bought everything the grocery store had that would help boost my iron. Our pantry is now overflowing with a million foods I'd never buy. I have to admit I'm an anal planner. I've stockpiled bland foods, foods to combat nausea, high protein foods, and now iron rich foods. At this rate Thanksgiving diner is going to consist of white rice with ginger & dried apricots washed down with a protein shake.
Going to try to do a few light chores around the house to get myself moving. I don't want to sleep the day away and end up not being able to sleep tonight. Busy day at work tomorrow. Want to do my best to be my best...whatever that looks like.
Sending love to all and wishes for an SE-free Sunday!
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Hi everyone,
I start chemo this week - the 25th. Doing TC or is CT (Taxotere and Cytoxan) 4 rounds every 3 weeks. I have my chemo teach appt Monday. Getting my list of questions together. I'm freaking out about possible permanent hair loss, don't care as much about temporary, but the permanent scares me. I have such thin hair to begin with and so little left from from my Hashimoto's Thyroiditis. I look horrible in scarves and hats, can't imagine wearing them for the rest of my life. Went to the cancer store to try on scarves and wigs a couple days ago. My mom laughed so hard at me. I see women all the time in chemo scarves and they look beautiful, I looked like a peasant. Even the lady trying them on me was cracking up. The wigs were even funnier on me. Might have to get one of those hats with the hair that comes out of it. I tried it on and it looked better than anything else, but still, I think it is so obvious, won't I just look pathetic? Anyone try one of those hats with hair? Maybe I won't be well enough to go anywhere but to doctor appointments anyway. I would like to try and go to my daughter's soccer games though but I keep imagining the hat with the hair blowing off my head. I bought a scarf for emergencies, my husband thought I looked like a pirate, well I guess that's slightly better than a peasant. I should have asked him if he meant sexy pirate vixen or the one eyed, one legged, toothless kind.
Scared to death about the chemo. I am already in such bad health after being increasingly bedridden for the past several years from what I just found out a few months ago is actually POTS (had thought it was Chronic Fatigue Syndrome). So I'm already fatigued obviously as I am bedridden 90% of my day, have debilitating brain fog, stubborn insomnia... So what the heck is chemo brain and chemo fatigue and steroid insomnia going to be like?
I need to find the energy to do the gazillion things on my list before chemo, but doubt I'll be able to get much done. Thank goodness for Amazon. Hoping I can buy most of the stuff there. Soft tooth brushes, Biotene, Zylimelts--that's all I have on my list so far. I'm sure there are many more things I need that I have yet to discover out here. I've given up on finding a comfortable bra since my UMX 7/13/16, so I guess I will go braless unless someone knows of a good bra that is as light as a feather yet super tight so as to keep my surgery site from continuously filling with fluid. Ugh, another thing for the list: get boob that is no longer there drained.
I'm so bummed I can't swim because of just getting my dumb chemo port in on Wednesday. Swimming is the only exercise I am allowed to do due to my POTS, until I buy a recumbent bike. Can't I just put a big waterproof bandage over it and go swimming? It's our pool and well maintained so it's not like a public pool. Does anyone know if swimming is an option once chemo starts? I saw somewhere something about UV light being an issue. I could go night swimming.
On a positive note, for those of you who haven't had your port placement surgery yet, I can tell you, that for me, it has not been bad at all. I freaked after reading all the posts out here about the port surgery nightmares so thought for sure it was going to be horribly painful but it wasn't bad for me at all. I didn't need any pain medication--good thing as they didn't give me any. The only issue is the seatbelt hits it but only when I am on the driver's side. Oh that's another thing for the list, one of those soft thingies for the seatbelt. Of course I haven't gotten the chance to actually use my port yet so...hope it stays relatively pain free.
Sorry to be such a complainer. I shouldn't post so late at night, ummm early in the morning I mean. Gotta go get some sleep.
So glad to be able to read about all your brave journeys. You all seem to be so upbeat, I hope to get my head in a more positive place before chemo starts.
Thanks
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welcome lisbeth!
Sorry you are struggling but we are here to support you!
I have very long thick hair, so the hair loss scared me... I had my wig fittings and ended up getting three styles. One, like you mentioned is just hair sewn to a baseball cap- and is perfect for outings like groceries etc... Looks totally real. Then I got a halo, that has no hair on top, but is long and is to be worn with hats and scarves... It's a lot cooler than a full wig. I also purchased a way too expensive full human hair wig that is near identical to my own hair... That I will use for work events and functions when I need to be "done up"... Since I plan on going almost entirely "in wig"... I wanted some options. Plus knowing it would be over a year before my hair was back to normal, I wanted my good wig to last.
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Lisbeth - I'm sure you make a beautiful pirate. Your story of scarf/hat shopping made me chuckle. I, too, wondered about one of those hats with hair. I am so not a wig person, but thought one of those would be okay. But like you I imagine it blowing off my head in a good wind. Guess they fit tighter than that. I did lots of shopping on Amazon as well. I highly recommend the GUM 517 Technique Sensitive Care Toothbrush and Listerine Gentle Gum Care Interdental Floss. I've found both very soft. I also ordered the GUM 317 Post-Surgical Toothbrush in case the 517 was not soft enough but haven't needed to try it yet. You really are dealing with so much. No need to apologize for complaining. We are all in this together and know that each of us goes through emotional ups and downs. Complain, rant, cry, laugh, joke, be honest...it's all welcome here. If we can't be real with one another then we might as well stop posting.
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Forgot to mention that you might want to check out the site Hello Courage. They sell a "chest buddy" to cover your seat belt. It's not only good to protect a port but is long and works really well for those of us who've had surgery - think it would benefit those doing rads as well. Shipping is fast and free. I also ordered a few caps from their budget collection that are super soft and light. Perfect for lounging or going for a walk. The items came with some wonderful, encouraging notes that made my day.
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I'll be starting this month...I'm having my port placed Wednesday. I think I'm more afraid of the port placement than the chemo...weird I know, but I am. I have a four year old, as well as 3 grown children, and I'm a little worried about my 4 year old bumping and banging it. (she's a little rough) I don't have a start date yet, but I'm sure it will be very soon after my port is in..I'm already 8 weeks post-op. I'll be doing c&t. I love this site, such a great place for support and information. good luck to all of you starting this month
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Hello, I guess I'll tag along here as I start pre-surgery chemo on the 29th. This is my first post though I have lurked on this site since cancer was a possiblity.
Still trying to wrap my head around everything. I found my lump in early July, mammo didn't show it, ultrasound did (super dense breasts), biopsy came back cancer with 1 ax. node. Had breast MRI, CT and Bone scan all clear except for the 1 lump and 1 node. The lump is 3cm but it has some arms that make the entire area 4.6cm.
Port surgery on Thursday (8/25)
Cutting off my waist length braided ponytail tomorrow. Picked out a cute wig Friday after my chemo class and echo. Figure I am losing my hair in 3 weeks, might as well get used to the idea though I am dreading it.
I am a homeschooling mom to 2 boys aged 13 and 11 as well a wife of 15 years. I am truly hoping to continue to homeschool, though not as actively as I would like.
My main concerns: killing the cancer, and preventing neuropathy and lymphedema if they end up taking out nodes. I know that my life will change because of this, but I would still like to be able to paint, play piano, and go camping with my boys for decades to come. And, of course, not feeling like total crap in the meantime. Not too sure about the latter, lol.
Here's to the next chapter!
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wenchlori- I'm not very private, so feel free. I'm suppose to start on the 24th, but just worried that the Nuelesta order doesn't get there and throws it off.
lisbeths- thanks for the laughs, I'm thinking i'll look silly in wigs, so may just rock the beanies and hats, but who knows.
To all the others that are so honest and open with SE's (thanks for the link to the abbreviations!!)- so appreciate it so I know what's potentially coming.
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jandjmom- i think we were typing at the same time! I'm not great at posting, but enjoy reading. We seem to have similar diagnoses and plans! I have one 13 year old, and my only main concern right now is to be able to keep her life as normal and active as possible. We enjoy camping too (trailer camping so a little spoiled)- always my way to relax! I look forward to killing this cancer as best as possible, quickly then move on to the surgery. I'll be curious what the thoughts are for radiation- did you get any feedback on that by chance?
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Hi all your wish is our command. THanks to WenchLori, here are are start dates so far:Ashley29, 8/1/2016
Jiffrig, 8/2/2016
Karey58, 8/5/2016
WenchLori, 8-5/2016
Scartsadday, 8-8/2016
DaraB, 8/8/2016
Kenzielulu, 8/8/2016
Caligirl, 8/9/2016
Chvas2016, 8/9/2916
Janetco, 8/9/2016
Sensi, 8/10/2016
AnnieTater, 8/10/2016
adawn24, 8/11/2016
Fireheart, 8/12/2016
Tunegrrl, 8/16/2016
Pinkjellyroll111963, 8/18/2016
Hopefloats, 8/19/2016
SherriT, 8/19/2016
Ajbclan, 8/24/2016
Kz1966, 8/24/2016
Kechla, 8/25/2016
SweetRain52, 8/25/2016
MFalabella, 9/2/2016
No dates yet
Pisces74
MaddieH
VLH- fighting infection :-(
NikkiRose
Lifeisntover
Sattipearl
xoxoMichelle and WenchLori
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Warmest welcomes and hugs to jandjmom, Kz1966,Caligirl55, ajbclan and anyone else we haven't already greeted. We are all here for you!
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Thank you to Michelle & WenchLori for our dates which pointed out to me that I posted the wrong chemo start date ... I began 8/9/16 I have no idea how I posted wrong ... and keeping with that theme I realizes when I looked at Lisbeth's post ...Welcome Lisbeth .... I don't even have my chemo treatment down correct. I am also having Cytoxan & Taxotere so not sure if I am CT or TC?? Whatever it is Lisbeth I'll keep you in my prayers. Also I bet you will look great in a scarf .... It's all in how you tie it the sweet lady said which made my daughter and I laugh as I tied it like a noose.
Welcome jandjmom your chemo is a day before my second treatment.
Kaceyr0423 good luck with your port.
Ok I'll say it again ... Love this site and all you ladies.. Hope y'all have a good Sunday.
Hugs 😘
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Thanks Caligirl55!
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