Starting Chemo April 2020
Comments
-
Allie — Don't care if it's 10 min to go, ask for a blanket. I know you well enough by now you're a considerate, people pleaser (I didn't want to trouble my nurse for a straw but I couldn't drink anything with my hands in ice without one)
are you icing hands/feet?
Can’t remember better than a gnat and that was before chemo started. My MO is insistent on it. Taxol is at the end of my five goodie bags so I look like I’m moving in for a week with my ice chest and snack/clothing bag. Was so grateful I’d taken an extra sweater, because I got soaked up to my elbows when I spilled my hand ice which turned magically into ice water. Will take my own extra long straw next time. I must look like one of the three stooges
🌈
j
0 -
Thank you J!
My chemo nurse told me they will be getting into the details of the Taxol with me, i would expect sooner rather than later. I did hear from one of the Onco NPs that i am not going to need the some of the after chemo meds i now take but i forgot some of what she said. I am finding a pattern now that this hits me emotionally right after chemo and i get foggy. tired. and forgetful. I also get a little headache right btween the eyes.
But i am ok. Good appetite.
Allie
0 -
FaithGA - I echo what Les said about the gloves and booties. I use them also, but I do bring them in a cooler, since we're a little farther away from the infusion center, so my husband can't bring them. They are cold when I start, but do not last the full 90 minutes. I have some really good, small ice packs that do stay frozen, so about halfway through, I shove them in the gloves and booties and that keeps me iced the whole time. I had not done the ice chips prior to my last infusion, but I've been having a hard time with really dry mouth and sore spots, so I did it last time and I definitely think it helped. The dry mouth is greatly reduced, I've had no sore spots on my gums, and my numb spot on the tip of my tongue came and went in a couple days. So I'll definitely be doing that again.
Jess - you are SERIOUSLY adorable!
Allie - I have had the same "headache" feeling between my eyes - to me it feels like supreme dryness up in my sinuses. Not exactly like a headache, but bothersome nonetheless. SO much dryness in every membrane of my body.
I like FaithGA's suggestion of the private FB group - if anyone else is interested. Another friend who actually recommended this site to me in the first place said her group set one up too - and that was 17 years ago. They are still active and close. Anyway, I would be happy to set that up if people are interested. Let me know.
Kris
0 -
Kris — Yes Yes Yes to FB group. Would offer to help set up, but don’t know how. I’ll PM you my FB info
🌈
j
0 -
Facebook - I'll research the specifics and make sure it's totally private and share out once I have it. On J's suggestion (and my own same thought), we're Allie's Cats forevermore.... !
0 -
Hello all!
Finished up taxol # 8 yesterday which means I'm half way through my chemo journey!
Allie, When I was first diagnosed my surgical oncologist gave me some great advice, now is the time to be selfish. I am a people pleaser and rarely put myself above others. I have tried very hard to take her advice. At the time of diagnosis; I worked full time, was working on an advanced degree (set to graduation in Dec), raising my 4 year old, all while my hubby worked about 60-70. I cut back to part time and started working from home, paused my education (which hurt the most) and hubby also cut back on his hours. It has been a challenge, but I have tried really hard to accept help. My mom told me it makes other happy to accept help, so I tried to remember that.
Hope everyone is well and the SEs are minimal.
Stay strong!!
Lise
0 -
Lise -
Cute coordinated scarf and mask! I definitely agree about the "letting people help." Really hard for me too, but I learned that a bunch of years ago when my husband was deployed for 15 months and I had 4 kids at home, one of whom was 2 weeks old when he left. The way I thought about it was thinking of what I would do if it were my friend - I would not hesitate to help, do whatever it took, and never expect anything in return. So why would I think that others would not want to do the same for me? And also - it's a gift to allow other people to be generous. Sometimes, generosity is hard when you are wrapped up in your own life and struggle, and giving people the gift of generosity is a grace in and of itself.
Kris
0 -
Kris! Yes! That is a better description of the headache, especially if iam looking down, reading a book. Does not last long and is not painful. Just there and you wonder aboutit like everything else! Membranes! Yes! Dry! Water and moiturizers!
Allie
0 -
Kris - it's possible to create a 'secret' FB group. I run one for a local triple negative support group. It's more private than a 'private' group. Feel free to send me a PM if you want any additional info on this option.
Lisa - wow, talk about coordinated. Love it!!
Hope everyone is doing well with minimal side effects. I'm feeling really good now but am bracing myself for my final chemo (assuming blood counts are good) this coming Friday. In the meantime, I'm going to savour this feel-good time.
0 -
I am so down for the private FB group! Whoever sets it up, I’ll join!
Ditto to all those who are learning to accept help. This has been something with which I’ve struggled, but I see how helpless my friends feel and how much it cheers them up to help me. If the shoe were on the other foot, I would certainly hope that my friend with cancer would allow me to help them. That thought has better allowed me to accept help.
Also, y’all are cracking me up with the warm blankets during chemo. I guess it’s the forced menopausal hot flashes, but I’m never cold during chemo. The nurses always offer me a warm blanket, but I then I give them some sweaty side eye. I think they‘ve learned now that I’m some sort of chemo anomaly.
Hope everyone is having minimal side effects. If counting Infusion Day as Day #1, I’m beginning Day #3. So far, so good. Just super tired.
0 -
Les - I am in and out of the blanket the entire time due to the hot flashes! Talk about awful! I’ve been a hot sweaty mess. Considering going to my next infusion without the headscarf since that seems to make it worse.
Cooling thoughts your way.
Lise
0 -
Lise,
Do you think it is the steroids? Are you on steroids? I am a bit of a hot mess on them I feel. This is so odd. But now that the weather is getting warmer, I have a nice fan on and this time around, I feel less of that effect. But I will tell you, I look in the mirror when I am on steroids, and I am flushed!
I take two decadron right before they start the chemo and then I take one twice a day for three days after. They also amp me up or else it is the combo of post chemo, lack of sleep, anxiety, and steroids. But it goes away after the three days...
Allie
0 -
To all, I'm reading all the posts. And I'm thinking and sending fond thoughts to you all!
Allie
0 -
Allie - I think mine are caused mostly from the hormone blocker putting me into menopause. I’m taking taxol first so the only steroid I take is during my pre-meds. I’m in Florida so it’s been hot for a while, in the 90s today. I hate (or used to hate) being cold when I sleep but I’m considering a bed side fan because I wake up a sweaty mess multiple times per night.
0 -
Lise, That was my second guess - hormones! I am using a lovely "tower fan" at night and it is doing a good job for me. I have never had air conditioning (well once...for a brief time) but have not had it in years and that's probably a mistake...anyway...in Florida, that would be an entirely different matter I and would have to have it! I don't like being cold at night either and have to wear bed socks and a cap if it is chilly. Even though I'm warm, I still have the blanket and spend a fair amount of time either putting it over me or removing it! The cat tries to help too by sleeping cuddled up with me.
Allie
0 -
Hello ladies! Lise and Jess, LOVE the pictures!! Lise you look not so thrilled in your picture though lol.
Sherri- Yay about your final chemo!!!!! I hope you have a phone with that one of the nurses can record you running your bell/ tooting your horn!! If you get a video, please share it with us!!
Hot flashes are terrible!! Since last chemo I was on a hormone suppressant so I've been dealing with them since January of 2019, but since stopping the hormone suppressant and restarting chemo holy crap are they terrible again!! The night sweats are ramped up to. I have to usually sleep with my ceiling fan and a small table fan on to make it through the night. Oh the joys of being a women lol.
I hope all you ladies are having a good weekend, and staying safe!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
0 -
Les - SAME! I'm in short sleeves and a skort during chemo and I'm never cold. I bring a blanket and pillow with me and I use the pillow to prop up my phone or the laptop, but I have yet to use the blanket. The nurses keep asking me too, and the look on my face when they ask about the "warm" blanket must be priceless. Thank you, menopause. I live in Atlanta and I'm ALWAYS hot in the summer. I hate it. Right now, I'm SO grateful for the baldy head - keeping me cool! I am not hating that part. I can actually have some covers at night.
Kris
0 -
All -
I've started the private FB group for anyone who wants to join. This DOES NOT replace this group here - and of course everyone should keep posting (I will!) because this information is all helpful for other people starting chemo. But - if we want to keep in touch longer term AND we want a place where it's easier to see conversations, continue them without having the read through entire threads, etc. FB is a better place for that. In addition, as Jess has said, this thread here is public and open to anyone who comes onto the breastcancer.org site, so anyone could find this information and our conversations.
If you would like to be added to that FB group (which is hidden, so only people who are part of that group can see it), please PM me either your FB name or your email address so I can add you in. Les - send me yours!
Again - no pressure! Jess - if you want to put something at the top so people know to contact me, that's fine.
Kris
0 -
Ladies, you will find the Facebook group so much easier to navigate! We recently had one of our members give birth to a beautiful healthy baby boy! Out of about 38 of us who started this journey probably half of us are still fairly active online. We did a private message chain and raised $460 to send a gift card to our member that gave birth and lives in Canada! We have done a Christmas exchange through Elfster a few years now that is strictly voluntary and no pressure, but a lot of fun. I actually opted out of that this year because I was just not in the mood...bah humbug! Our first get together was at Mary's place in New Jersey! It is amazing and 7 of us went. Last summer a member graciously offered her Tybee Island beach house and 8 were able to go. More could have gone but timing and finances dictates these things. But the biggest gift in our group has been the caring, support, advice, acceptance and love. Our group is what has kept me sane through this all.
Kris, I live in South, GA and traveled to Emory Saint Joseph's for my surgery, radiation and doctors. I have twin nieces in Sandy Springs that I stayed with. My cousin who is going through this now, is also going to Emory Saint Joseph's and Emory Midtown. Thank you for the advice about the icing. I iced but it was much more complicated 4 years ago without booties and mittens! I sucked on ice and had no mouth sores at all after 12 taxol treatments and no neuropathy. Have you heard about biotene rinse? It is highly recommended to use 2 or 3 times a day to help prevent mouth sores too. I'd suck ice during chemo and add biotene to my regime as well.
I'm so happy y'all are starting a FB group! You will love it!!!
Paige
0 -
Lise- my chemo twin! So great to see your pic! Congrats on being halfway done, 8 out of 16! I am so stoked that we’re on the same regimen just a week apart. (Was it Heather, too, who is also our other twin?) Thanks for sharing your story about your busy life before and what you had to change to make time for putting your cancer fight first. I can’t imagine how hard it was to put your degree program on hold, but the treatment time is only temporary because I know you’ll beat cancer and will take on your superwoman life again with renewed vigor! And look how fast it’s going... I mean, halfway done with chemo is an amazing feeling, right?!
Sherri- FINAL chemo this Friday?!? Omg congrats! Can’t wait to celebrate this with you and the whole group!
Kris- Yes to FB! Looking forward to connecting with you all there. (Thanks, Paige - FaithGA, for the suggestion!) I hope we used the Allie’s Cats nickname because it still cracks me up!
Allie- talk about amped up energy, it’s 4:30 am and I’m still up! The steroids for sure. As part of my premeds every week, I get the deca-whatever in the IV. And I’m usually up late for the first 2 nights, only getting a couple hours sleep each night. Last “night” which was the day of chemo, I only slept from 4:30-6:30 am, and since it’s 4:30 now, it looks like I’m on track to do that again tonight. Crazy. Thanks for sharing your symptoms- like the little headache- it’s always interesting to hear what we as real individuals are experiencing, rather than a doctor’s or website’s generalized description of potential SEs. About Taxol: it seems to be much milder than other drugs, so I would think you’ll handle it pretty well. Fingers crossed!
J- just a little note to say that you frequently make me laugh because your descriptions are so good, I can totally picture the scenarios like spilling ice water everywhere, haha! Always love your openness with what you share!
Les- omg yes I am usually hot during chemo, too! The other patients are all bundled up like little cozy croissants in layers of clothes and blankets, and I was sitting there in my tank top and short-sleeve baseball jersey (the thin polyester, free giveaway kind), and only really used the blanket I brought for the pics, haha. But sometimes for the Benadryl nap, I do request a blanket (they’re always toasty warm) and it settles me in to sleep through almost the whole session!
To join in on the hot flashes convo: I'm the same with feeling the heat... whether it's peri-menopause or whatever, I am always hot, though it doesn’t feel like a flash, just overall elevated temperatures. Also, I don’t actually get night sweats, but I do need to sleep with an ice pack on my pillow every night and sometimes wake up in the middle of the night to switch it out for another frozen pack, uggh. It's like there's a little fire burning at the base of my skull constantly (not painful, just weird and hot), so I often use an icepack for my neck or head during the day, too. If night sweats are the next thing, I am definitely not looking forward to that! (Also, hi to Katie, and thanks for sharing your story about dealing with this since your first chemo round!)
IDEA: I also had an idea of hosting a Zoom meet-up if anyone’s interested in video chatting together. I think it would be fun, but I totally understand if that’s too much. By the way, if you’re not tech-savvy about Zoom, the great thing about it is you don’t have to purchase it or create an account to use it. I can send a link and all you have to do is click it, allow the program to install (takes about a minute), and you will be able to immediately join the meeting. Alternatively, we could use another platform, of course— like Google Hangout, Microsoft Teams, etc., but I use Zoom a lot for work and it works well.
Happy early Sunday morning! Hope we are all safe from coronavirus and riots (for those of us in the US) and hope we all have one of those Good Days that we all appreciate so much now!
0 -
God bless you Jess. You are marvelous!
"Deca-whatever" and "Benadryl nap" have made my day!!!
XOXO to you and to all in this miraculous journey!
Allie
0 -
Hey all - Glad so many are in favor of the FB group! When you PM me, please give me your email address that you use for FB. That's the only way I can "find" you to invite you, since we're not "friends" on there. I can look you up via your name just to see your page, but I can't send the invite that way.
Paige - I'm getting all my treatment through Piedmont Cancer Center. They have been great. St. Joe's is close to me also - I live on the East side and know that area well!
Jess - I would be up for a Zoom call!
Kris
0 -
First i am excited there will be a FB group i think that will be much easier to maneuver and not as much scrolling to find information.
This might be unrelated but i was wondering if its okay to go swimming after i had chemo last Tuesday. I feel pretty good today and i hope it continues until next round. I live on a spring fed lake and we always float in chairs and rafts..i haven't been in water at all yet. Fever was on Friday from Neulasta shot after work but i feel good today, not as tired and would love to be able to go in lake to float or paddle board. I think I'd have to use lots of sunscreen but wanted to ask what you thought. I go Tuesday for CBC/lab work and the next Tuesday also.
I am doing TC chemo and I research and found these cryomax gel pads that come 2 to a pack so we bought 3. They don't sweat and stay cold for 6-8 hours and i used the little case that covers them asa mitten and slipper. I had light socks on but the RN gave me 4x4 gauge to put between the ice and my fingers and that worked well. Hope this helps someone
Have a great day
0 -
Sueshe55- Swimming, absolutely! I’ve dipped in my sister’s pool (I’ve broken quarantine for my sister’s house only- she’s a nurse and very careful with exposure) and it’s an awesome R&R / self-care / downright-fun day that we all probably need and definitely deserve! As you already mentioned, extra sunscreen is a must, but I can’t imagine any reason why you shouldn’t be able to swim. (Of course, I’m not a doctor; just one of us cancer newbies figuring life out day by day!)
0 -
Sueshe55,
Here are some guidelines from The American Cancer Society:
I have not asked my med team about swimming so I'd be careful and ask them in my case. I think water exposure would be based on individual case and water body type. I am on Neulasta too. (AC chemo). But I also have some skin breaks and nasal issues that probably would probably limit my personal water exposure at this point to keep me safe and/or at least ***believing*** I am safe!
Enjoy no matter what you decide to do!
Allie
PS And thanks for info on icing. I'm going on Taxol next and am wondering about that.
0 -
Hi Jess,
I wouldn’t mind doing a Zoom meet-up at some point. I use it all the time for various groups and family stuff. Good idea!
Nan
0 -
Nan!
Hi!
Listen, being a knitter, I am wondering what you know about this:
https://www.appleyarns.com/products/knitted-knockers-kit?variant=883381829657
I am thinking about purchasing this kit.
I am an experienced knitter but it's been a while since I've had needles in my hands...
I can knit socks, if that gives you an idea of my skill set.
What do you think Nan?
Thank you.
Reason I'm asking: I've not been able to be fitted for prosthetic yet and may not be for a while because I have more chemo, surgery, and radiation on the way...Also, at this point, I just want something that is comfy and makes me look a little less lopsided.
UPDATE: Nan, I'm seeing now that there are a lot of free resources, patterns, and tutorials online and so I might start there instead of the above kit. Also, I knit on Magic Loop and so am wondering if I can find a pattern that uses that!
Oh my gosh! I found a Magic Loop Knitted Knocker Nan!
Fun!
Allie
0 -
Allie - I'm not a knitter but I'm a 'knitted knocker wearer' (yes, I suppose it's thing). I ordered a pair for free from Knitted Knockers Canada. Here's a link to the U.S. charity: http://knittedknockersusa.org
When I had to have my right tissue expander removed temporarily, I ordered a pair. I really only needed one but the pair has given me the opportunity to alternate while one is in the wash. I'm not planning on getting a 'permanent' protheses unless the replacement expander fails. In the meantime, this is a really good option. They are lightweight, easy to wash and fill my bra perfectly. You'd never know I was wearing one. Also, the charity has the option of ordering swimming ones too. I wish I could knit and then I could donate some.
0 -
Sherri.
Thank you so much for the feedback! I am heartened by it!
I am going to post a link to a fun knitting knockers tutorial I have watched and who knows, you might want to give knitting a whirl!
Fondly,
Allie
UPDATE: This is just a fun video to watch about knitting knockers. Who knows? You might want to take up knitting after watching this!
0 -
Allie - are you opting for not having reconstruction? I'm leaning that way but want to hear from others who have done the same thing.
Kris
0
