Starting Chemo April 2020
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How many do you have? Me, 10 out of 19...I guess I will count that as a win?!? Erin
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Nan,
Good to hear from you.
Glad you are out from underneath the bed!
I thought I heard steroids could raise blood sugar but I did not know that about the Cytoxan. Well that stinks.
My blood sugar has been high too for the last two non-fasting readings. They keep telling me to not worry about this as it is not "too high," etc. But I know they are watching it along with everything else...
I'm about 30 pounds overweight too. And so I too am hoping/betting the high blood sugar is reversible, especially if I can get rid of the weight somehow...I'm not exercising either and so that doesn't help...
The other thing you might try for the mouth is the "Healthy Dentist Peppermint Twist Mouth Rinse with 20 percent Aloe Vera" It is at my local CVS's and grocer's. I've been using it for quite a while (pre-chemo) and I also use Paradontax toothpaste for the gums (again before chemo). I have a lot of dental restoration and a couple of missing molars and I like to think both help my gums stay in better shape. They say that aloe vera is good for chemotherapy mouth.
I had a yucky couple of days recently too after my last AC session and chalk it up to the cumulative effects of chemo...sigh...I also picked up some weirdo skin reaction "hand and foot syndrome" I believe it is but it is also on my inner thighs and is worrying me. Will speak to doctor/nurse again about this on Monday.
I started Taxol last Thursday.
Allie
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Erin,
Chemo girl (the drawing) makes my day!
What a riot!
Allie
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Hi all! Sorry for being AWOL again. But between my husband’s surgery, the parents visit, and my daughter’s family PCSing to only three hours away, I’ve actually been busy. I finished AC two weeks ago. (Yay!) I had CT scans last week. There is no new growth in either my breast tumor or lung tumors, but there’s no shrinkage. So we’re holding steady for the time being. I’m actually at the infusion center right now getting my first Taxol/Carboplatin treatment. My oncologist doesn’t do the icing thing so we will see how it goes. Ugh, just had to get more Benadryl because I started itching.
My husband’s surgery went well, as did my parent’s visit. Apparently they were expecting me to be sick in bed, so they were pleasantly surprised that I got up and got dressed everyday and puttered around. I also got to go to my daughter’s house down at Scott AFB this weekend. It was so good to see my grandsons! The five year old loves my bald head. He rubs it while I read to him. 😂 She and the boys are coming on Thursday to stay a few weeks.
As for the recon discussion: I’ve been thinking about it a lot too. I waver back and forth about it. I’m going for the bilateral mastectomy too. Since I have a strong family history. But part of me doesn’t want to reconstruct, but I know I will grieve for my girls. I’ve used them so much! I have DDs, so it would be a huge switch to be flat. But these boobs have nursed babies, put a whole host of small children to sleep, gotten me countless free drinks, and even distracted men I was doing business deals with. Lol. So, I will miss my girls, a lot. Plus, I’m only 50, and I’m losing weight, so I might be able to end up with a great figure again. Such a massive decision.
Joining the Facebook group for sure, and would love a zoom call!
Love to all. 12 more weeks of chemo. So ready to be done.
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Erin - that drawing is hilarious! 7 for me, so I'll take it.
Stacey - so glad your daughter and the grandkids are back and settled. I don't have the DD issue on the boobies (barely a B cup over here) but it's definitely a big decision. I nursed all my babies too - so for that, I am grateful. More and more, though, as I get further into chemo, I just want to be "one and done" and moving along. Definitely still mulling it all over though.
Kris
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Stacey, so good to hear from you. I'm on FB now but check back here fairly frequently. Glad to hear all is well with you. Recon is a huge decision and the only right decision is the one that comes from your heart of course. I could list out all the soul searching I did when I made my decisions but that's all it was - my decision!
Allie
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Nan- So good to hear from you and that you're feeling better! Thanks for posting about high blood sugar. I will read up on it and talk to my doctor to see if that's an issue for me as well. And I agree that time is just flying-- can't believe we're all the way in summer already!
Stacey- Great to hear from you, too! I loved the little bit you shared about how your grandson likes rubbing your head. And finishing AC and moving on to the next drug is definitely something to celebrate. Hope your Taxol infusion today is going well!
Erin- Great pic! And I laughed at that funny illustration of side effects... I guess I'm around 7-ish, so hey, not bad!
About a Zoom call: Would this Saturday morning/afternoon work for everyone? (Maybe not because it's Father's Day weekend.) Here's my first suggestion on a meeting time... I tried to find something that would fit most of our time zones. Please feel free to suggest a better time! Once we figure it out, I can set it up and PM you (or post on our closed FB group) with the Zoom link and instructions if you've never used Zoom before).
Corresponding UTC (GMT) Saturday, June 20, 2020 at 15:00:00
Local Time:
California: Saturday, June 20, 2020 at 8:00 am (PDT)
Colorado: Saturday, June 20, 2020 at 9:00 am (MDT)
IL/MN/AR/TX: Saturday, June 20, 2020 at 10:00 am (CDT)
NY/MA/FL/GA/Ontario: Saturday, June 20, 2020 at 11:00 am (EDT)
Nova Scotia: Saturday, June 20, 2020 at 12:00 pm (ADT)
Dubai: Saturday, June 20, 2020 at 7:00 pm (GST)
In the meantime, sending love and positive energy to all of you!
~ love, jess
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Jess -
I'm EST and I'm good Saturday at 11am
Kris
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Jess - Saturday at 11:00 ET, is good for me
Sherri
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Jess,
Im CDT and the time would work for me.
I hope you ladies are having a good week!!
Keep up the fight to kick cancer's butt!!🥊🥊
~Katie💗
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Hi everyone! I'm new, but have been reading this thread regularly. Finally decided to make an account and join my April friends
I'm in the last leg of my chemo journey. My last chemo is July 3, and then I will return just every 3 weeks for the herceptin infusion. I wish everyone health and peace.
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Welcome Coco!
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Welcome, CocoB122! We're glad you've joined our community and hope you find this to be a supportive and encouraging place!
The Mods
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Hi Coco! Exciting to be on your last one! I have my 5th of 6 the same week as you - and then my last one on July 24th. Then Herceptin and possibly Perjeta for a year.
Kris
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Hi Coco! Welcome! Super cool that you are close to finishing chemo... can’t wait to congratulate you! I’m glad you’ve been reading along and finally decided to join the group! I think the members here are just the best, best people. They make me feel so supported and understood. And it’s never to late to reach out for support— I’m sure there’s still a lot for us to continue talking about even as some of us finish our current treatments. I added you to our Roll Call list at the top. You’re also welcome to join us on Facebook if you’d like- more info about that is also in the top post, under the Roll Call.
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funny I don’t mind the xylimints that stick to your gums at night, I ran out and wonky tongue last night so ordered 2 boxes. I never used the melt strips tho snd ACT lozenges are good for during the day
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castigame - tx for sharing your experience with steroids and cumulative effects of chemo.
ccgirl - great idea to stay connected by FaceTime. Never thought we'd go through our chemo physically alone, but here we are doing just that and making it work for us!
hog_co-pilot - thank goodness there was no infection at your incision site. Also, yay for shrinking that tumor. You are putting in that hard work and it shows!,
jettie - welcome! How are you feeling today? I'mso thrilled to hear that you'll be done at the end of June! So close now!
BostonGal - curious about the blood sugar creeping up. I know that steroids will temp boost your blood sugar, but they should drop back down again from what I understand. When you say going up, are you measuring at the same time every day (fasted, upon waking)? Otherwise, it could just be related to what you've eaten immediately before your blood draw. I'm a little obsessed with blood glucose being keto. I've even bought a glucose monitor for myself. Interesting about cytoxan (yes, I was wayyyyy behind). Also, I hear you on the heartburn and fatigue. And congrats on completing your first regimen 💯
ByHisGraceTwice - thank you for sharing your experience with the palliative care team. They seem receptive and I'm hopeful your pain is under control today.
jelloelloello - as always, your themed chemo pics give me life 🙌 Your attitude lifts this entire board - thank you for sharing *you*
LiseC - congrats on another round DONE! You are so right about being open to accepting help and really cutting back on all of the millions of things we as women (and some mamas) do. I asked my husband to take time off of work too which was essential while the kids were homeschooled cause of the pandemic. I've also cut back my hours by taking my sick leave as needed.
sugar77 - ring that bell gfriend! You DID IT!
Hurricaneblair - congrats on another round done. And that chemo SEs pic is bang on! Mae me laugh/cry.,
authorspot - congrats on finishing AC! I think stopping the growth is positive... next up... shrinking! I will keep you in my thoughts. I love that your grandson rubs your head. Kids are so wonderful like that!
Cocob122 - Hello! I'm right there alongside ya wrapping up my last chemo on 7/2. Keep up the great work!
Thank you everyone for the honest chat about reconstruction. So helpful for all of us to read and learn from.
I'm totally up for Facebook and Zoom (I think there's a zoom chat this morning...great timing!). Wahoomama87 - I'll send you my email.
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Hi everyone! We are going live on a Zoom meetup in a few minutes (9:30 AM Pacific Time)!
If you're still interested and didn't get the invite, please PM me and I can send you a link or Meeting ID. ~ love, jess
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Hi all,
Greetings Coco.
Vilija: In answer to your question, my blood sugar is non-fasting and is only measured during pre-chemo, a day before chemo. It is usually a couple of hours+ -- I think -- after a meal. The last two were 140 and 139 I think...The team is aware that I've said it's a little high but ot so much that they've indicated they are concerned about it at this point. All the blood work gets a little messed up during chemo as we all know...I'll have another round next week. I'm off steroids now because they are not needed after Taxol infusion for me.
Before that, my internist only measured fasting glucose and it was fine. But I'm overweight, inactive and likely have been eating too much in the past couple of months. Add in the effects of chemo and other drugs and we have several reasons my blood sugar could be affected I would imagine.
Allie
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Hi all,
Sorry to miss the Zoom meeting. I was so sick yesterday, I ended up sleeping all day. I think it was the usual Day #5, but times 5. And to add to the fun, my temp went up to 101 so I called the emergency line for the after hours doc and they never called me back. So I just took 2 Tylenol and went back to bed. By 2am, it was back under 100. I’m going to call them on Monday and find out if they want me to come in to check my white count. Guess it’s not a good thing to get sick on Saturday night on the first day of summer on Cape Cod. Today, I’m feeling better, not so dizzy and able to stay awake. Hopefully, this means I’m on the way back up again. I’ll be so glad when this is over!
Hope you guys are doing well. Let me know how the Zoom thing went. Are you going to do it again?
xoxo
Nan
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Nan,
I don't like they did not return call. My center instructs that if you do not get a response within 30 minutes when you call your on call provider, you are to call back. That happened once to me and they attributed the missing call back to change of shift. My regular oncologist was then notified and got back to me. You are a smart lady with more experience at this than I so I know you will do the right thing. I hope you are feeling better and your temp is down.
Allie
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Nan, This might be a double post but when I submitted my response to you, it disappeared! I'll try again!
I was told by my center that if I don't get a call back within 30 minutes I'm supposed to call back. I had one missed call back that was attributed to a change of shift and so my regular onocologist was notified and she called me. I'm glad your temp is down and hope it continues its way down and that you feel better asap if not right away!!!
Allie
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Hi Katie - I started Chemo in Feb. 2020 and had AC followed by 12 Taxol. Had 11th Taxol Thursday and toenails on big toes are sore and dark pink this weekend. Searched on toenail loss and found your post. Did your toenail grow back? I have been icing during Taxol infusion and for another hour or so when I get home. Any thoughts or recommendations? Thanks! -Kathryn
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Kathryn,
I know you asked Katie to weigh in and she will but I've been on AC and Taxol and have something to say about nail changes and Hand and Foot Syndrome.
I've learned/heard that all nail changes will correct themselves eventually...
I had four sessions of AC during which I developed "Hand and Foot Syndrome" which I have trouble telling the difference from the nail changes you can get with Taxol. The hand and foot thing is like a mild sunburn (with some peeling...) to me at its worse which is a couple of days after AC chemo after the third and fourth session. It started with a little reddness and tenderness around a pinky after the first AC tho' Managed with lots of moisturizers, avoidance of things that will bug it (heat, pressure). It did spread to my inner thighs (so odd..) but that too has settled down.
I've had two sessions of Taxol and developed nail changes quickly: there are red discolorations and again, about two days after infusion, the nail beds get sore for about a day. I put lidocaine cream on them this past Saturday and it seemed to help! By Sunday, the pain was gone but the sensation in the nail beds is still off...
I iced during the second Taxol infusion but had trouble because the darn ice packs don't stay cold long enough! I am rethinking how I am doing the icing and will likely keep it up even tho' the jury is out whether it works and I am having trouble. No harm in trying something that might help I say and my chemo nurses are very supportive and tried to help me with giving me replacement ice packs and wrapping up my hands! This group has given me some specific suggestions too to try.
Allie
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Hello all! I've enjoyed reading through this thread. What a supportive group you are! I have a question for those of you who have had AC and then weekly Taxol. I just had my 4th/final round of AC 6/18 and am scheduled to start weekly Taxol treatments x 12 weeks on Thursdays. I will exhaust all leave of absence options around the 9th round, so I am going to have to figure out a way to work around the last 3. (I know many people work through chemo, but I work in a hospital setting/with patients and so have been off work to avoid COVID-19 exposure). I only have to work 18-20 hrs/week and my manager will be flexible with me on the days. Can any of you advise how you plan your work schedule around Thursday treatments considering fatigue levels? Which days in the cycle are your better days? Thank you!
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Ilovethemoon: Hello! Welcome to our group : )
I also had my weekly sessions of Taxol on Thursdays. Counting chemo day as Day 1, I felt great on Thursday and Friday (Days 1-2) because the steroids gave me energy and the other pre-meds blocked some of the other side effects.However, it was also very hard to sleep- usually only 2-3 hours a night- so keep that in mind for how productive you can be the next day. A few times, I started to feel the fatigue from coming down off steroids on Friday night (Day 2), but usually not. Usually, Saturday (Day 3) was when the soreness and fatigue started to hit me, but my "bad day" was Sunday (Day 4) for sure. On Monday (Day 5), I still felt low-energy and kinda sore for half of my weeks, but the other half were ok on Mondays. I called Tuesday and Wednesday (Days 6-7) my "good days."
I was lucky to be able to work a part-time (20 hrs/wk) schedule of my choosing, so I chose: Tuesday & Wednesday full days (8 hours each) and half-days on Friday mornings (4 hours). I would've worked on Thursdays but my chemo appointments weren't at consistent times for planning.
You'll find that most of us said the same thing about Days 3-5 being the hardest. With the exception of chemo day if you have any bad reactions, or another exception is if you have diarrhea (which can be any day, just depending on your body) and then any diarrhea day is a bad day, haha (but not really haha).
Hope this helps you! ~Jess
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Question for the group:
I'm in a clinical trial that requires 3 weeks between Taxol and AC (also, I'm doing them backwards- Taxol first). The three week break is weird because I've been going weekly and have this go-go-go mindset about chemo, and now I'm just sitting here, feeling like maybe normal again, but also maybe I don't remember what normal felt like...? So it got me thinking about finishing chemo and what that will feel like.
For our veteran warriors who have completed chemo before, or those of you who have just finished for the first time, how does it feel, physically and/or emotionally, to finish? What do we have to look forward to? What surprised you? What was frustrating? What weirdness was going on in your body? How was life, family, work, etc. I'd love to hear your stories and suggestions!
To the group, hope all of are doing well and having as great a week as possible! Sending love and positive energy! ~ jess
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Kathryn- My toe nail has not grown back yet or given any indication it will. During my guest round with chemo my great toe nails and 2nd toe nails became thick and sore, kinda like a fungal infection but it wasn't an infection. I soaked them frequently in a 50/50 vinegar and water mixture and it really helped with the soreness. None of my nails recovered or went anywhere close to back to normal after chemo. I never iced my nails.
Maybe try the foot soak to see if it helps at all. It's what my chemo center recommended for me.
Ilovethemoon- welcome!! My guest round of chemo was AC-T and I worked 4p hrs through all of it, thankfully! My day was also Thursday fit treatment. I would have the morning off from work then work the afternoon. Monday's and Tuesdays were a little challenging as I had a good amount of fatigue and pain still.
This time around my treatment is on Monday's. I work in public health and still work my 40 hrs weekly. Thankfully most of it is from home. I was out of work for 10 weeks due to surgery and COVID precautions due to the field I work, the treatment I'm in and the surgery I had (lung). I don't work in a hospital setting so I'm not sure how it would work to distance yourself, could you do reception/huc type work maybe during noc to get your hrs but not have direct patient care??
I hope everyone is doing good, and staying safe!! Keep up the fight to kick cancer's butt!!🥊🥊
~Katie💗
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Hello Ilovethemoon...
I completed 12 weekly taxol and just got my first AC under my belt. I did my taxol on wednesday. I have continued to work 40 hours a week during treatment but I have had the luxury of working from home due to COVID. I have worked on infusion day if my infusion is in the afternoon. The benedryl premeds knock me out. I felt good until 8 or 9 which is when the cumulative effects seem to kick in for me. Overall I felt pretty good Thursday and would get a little tired Friday afternoon. Saturday and Sunday were my low energy days and I was feeling better by Monday. The last two weeks it was all low energy but I could push through. Hope that helps! Hopefully your boss can be flexible and you can figure it out.
You got this!
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Jess....I can’t wait to hear responses from the veterans. I just want to feel somewhat normal again. Or at least not like a bald, tired zombie 😂.
Heather
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