July 2020 chemo club
Comments
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Melbo: My Perjeta induced diarrhea starts usually day 4. This time I had constipation on day 3, felt great day 4, and day 5 the holy hell gates broke loose. Take the Imodium! I was able to get it controlled by mid-morning and was fine the rest of the day. After it starts, and I get it under control, it seems the rest of the time it’s manageable and I don’t need Imodium. I did get dehydrated, and I knew I wasn’t drinking enough fluids so I went in about day 8-9 and got a bag of fluids at my infusion center. That helped a lot. It can depend a lot of what I eat too. Greasy foods are a big no-no!
kimintx: Sorry you have to join us, but welcome! We are all here to help each other fight this nasty thing!
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So far the Imodium seems to be working, although I'm still really nervous about eating or drinking anything. I am trying to make sure I at least get my 64oz of water for the day though, and I'm at least on track for that. The nurse coordinator also mentioned a prescription I can get if the Imodium isn't enough, so I'll keep that in mind.
I also just got my genetic results back -- no genetic mutations for breast cancer. This cancer is just random. On the plus side, it means a low risk of getting a different breast cancer or ovarian cancer down the road.
kimintx - it's a terrible club to be in, but sharing the experience with others going through it at the same time does help a lot.
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Kimintx - welcome! Certainly the club no one wants to join but better sharing experiences with others going through it. Sorry to hear it's also in your liver. Love your positive attitude toward fighting it! A good friend of mine has it in her liver too - we see the same oncologist who says never to give up hope and that he has “a bag of a thousand tricks". So many treatment options are available.
Melbo - sorry to hear you're not feeling well. Hope you're able to move past that soon!I went for blood work today. Had my first infusion last Monday and second should be a week from now. My WBC was 2 and my ANC dropped from 5,000 last week to 640 today. Anyone else experience such lows? They said the ANC needs to be > 1,000 to safely have chemo so really hoping for a decent rebound this week! Dr gave me an antibiotic to take at even the slightest sign of infection. Wish me luck that the counts rise and no need for the antibiotic!
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Hi Ladies, I was talking to someone from my peer support group and I find her experience is quite inspiring so I might share it with you all. She got diagnosed in 2011 with stage IV and spread to liver. After the treatments she has been cancer free all these years. She worked full time throughout the treatments and now she is very happy and thriving! Her air grown back after a year and it became more curly and beautiful.
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Thank you for that story! I love to hear this and gives me hope!
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Good morning everyone! I'm at the center now for my 3rd infusion. Waiting on my blood work now. I have been feeling great the past week so I'm not looking forward to this again, but no pain no gain!
Welcome Kimi, I appreciate your great attitude!!
Britton, I'm curious about going in for blood work between infusions. Do others do this as well? I haven't had to go. They check my blood work the morning of my infusions.
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Smichaels: Best of luck with #3! Just think, you will be half done after this! I go before my infusions to get blood work...last time I went about 6 days before because I saw my oncologist that day. He had said my blood work looked great and I wouldn’t have to repeat it before my infusion. This time I go in Friday for bloodwork and then my infusion is Tuesday, I see my oncologist Wednesday.
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Melbo-how are you feeling after your first cycle?
Welcome Kimi
Smichaels-Going into the third round 💪. I hear you on feeling great and heading into another cycle. I feel pretty good and go back for my 2nd on Friday.
Evergreenman-it’s so good to hear positive stories!
As for me- I buzzed my hair last night as the hair was getting annoying falling out over the place and I started to have a bald spot on the front. It was a bit more emotional that I expected with that first look in the mirror. It’s a little shocking at first. My kids and hubby helped shave it off. I already go back for my 2nd cycle Friday. I’m really not looking forward to being on the steroid. I did struggle with some chest pressure (maybe anxiety) and poor sleep. I will meet with the MO eighth before the appointment to go over symptoms I’m assuming. I also scheduled an appointment with the integrated health doctor who will go over supplements I want to take and provide resources for holistic support.
Not sure who asked but I have not gone in for routine blood work between cycles. I go in 2 days before my cycle for blood work
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smichaels - My oncologist office brings patients back for blood work mid-cycle just between the 1st and 2nd treatments. They said it's up to me if I want to come in between future cycles. Although I wonder if they'll want to see me next time too if my counts don't rebound quite a bit. I probably will do it either way, if for no other reason than to see how much I should stay away from my teenagers (and husband who now spends most of his days driving our teenagers around!). I'm actually staying with my mother in law right now until we see how things go. The MO is concerned about potential infection. Best of luck on your infusion today! Another one to check off!
Nottoday - Good for you for getting ahead on the hair front. I noticed more 'shedding' this morning. My 13 yo daughter (at least as of now) wants to cut and shave my hair so thinking may do that Sunday or Monday depending on how things progress and how I feel after infusion on Monday. I'm sure you'll get more and more accustomed to it in the coming days.
Welcome Kimintx! I'm Kim in Ohio
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To all our new members if you would like me to add you to our members list in the orginal post please pm me your name start date and your treatment plan.
Smichaels11...wishing you the best today at your half way point!!
mtspacekace...my MO won't let me do labs any earlier than 24 hours.
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Welcome, Kimintx. We're here for you! This is a very kind, helpful and supportive group.
Evergreenman, thank you very much for the inspiring post about the woman in your support group.
Nottoday, best wishes as you go for your next infusion on Friday.
Smichaels11, yay, infusion number 3! Halfway through the chemo part of this whole experience. I hope all goes well for you today.
Brittonkb, hoping all goes well with your next bloodwork, and your infusion goes ahead on Monday. Your oncologist sounds great! I like his comment, “a bag of a thousand tricks!"
Melbo, I hope the lower g.i. problem has settled and you are feeling better.
Iamloved, I hope you are ok since your last infusion and fasting. (And I hope you enjoyed the Dairy Queen ice cream after your fasting!)
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Shar2020...I am doing ok. I do not have the Big D like I did during round 1. I do have more nausea and a bit more fatigue. How is your hair loss?I have been using my lint roller the last few days to help hasten the process. It is a still hard for me to realize this is my reality for the next year. I do have a tiny bit of numbness in my toes today. I will have to make note of that in my journal. 🤗 to all today!
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Question for all...does anyone else struggle to get liquids in? Everything this round makes me feel nauseous. Water power aides cranberry juice Sprite etc. Food isn't an issue but liquids make me gag.🤢
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Lamloved.... I haven't encountered that just yet. But, tomorrow will be my 3rd dose of Chemo. I have not had any bad symptoms yet. (knock on wood) I have had one mouth sore and kinda feel achy like I have a fever but it usually goes away. No hair loss yet either. I keep waiting for the bottom to fall out. Coke tastes really good to me and I was an avid Diet Coke drinker. I take Zofran daily so I usually never feel nauseus. Hope you feel better soon!
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iamloved-I was having a hard time after chemo because I had a metallic taste in my mouth. I ordered water drops and have been adding those which has really helped my intake.
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Nottodaycancer2020...could I get the info on your drops.
kimintx...I am happy to hear you are sailing thru this. I hope it continues for you! And no hair loss! Amazing! Are you cold capping?
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Iamloved, I find that keeping my water full of ice, with a few squirts of lemonade flavored Mio is helpful. I also use a straw so I can drink it really fast. I purchased a large, cute water bottle from Amazon that makes me a little happier while drinking it, lol!
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No, cold capping. No Chemo for me tomorrow because of low blood count. UGH. I have to go in and get some sort of injection. I just hate delaying everything! I am ready to roll!
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kimintx...So sorry to read that. The delay would be the worst.
Smichaels11…thx for the tip. How did today's infusion go? You're half way there!
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iamloved: I am really struggling to get liquids in! This round has been terrible. I did go in about day 7 and get a big bag of fluids, and am glad I did. After that I have been able to drink crushed ice, water, and a lemon slice (sometimes I add a strawberry) through a straw...or Capri Suns, and sugar free gatorades.
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Iamloved, today's infusion was pretty uneventful (just how I like it)! Blood work was good. I sat in the recliner for the first time. My other two infusions I was in a bed because of how long TCHP is, but it was pretty busy in the clinic. I didn't mind the recliner, it made icing much easier.
The only weird thing, and this happened during my second round too, was that about 10 minutes into the docetaxel it felt harder to breathe and my face was hot and flushed. It only lasted maybe 1 minute but it still freaked me out. I didn't tell the nurse last time, but I did this time. She didn't seem overly worried because it didn't last long at all. Anyone else experience anything like that?
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iamloved- the drops I use are called Water Drops. They are made with stevia. I bought a 4 pack on amazon
Smichaels-I’ve just had the one cycle but never experienced anything like that.
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I am in awe of those of you going through this with kids at home. I have spent most of the last two days sleeping on the couch with no energy to do anything and I know when you have kids that just isn't always an option.
My GI issues have been mostly controlled by Imodium and none have been as awful as the first day of issues. I feel like maybe I might have some energy today, although if I end up taking nausea drugs I expect I'll end up right back on the couch again. Hopefully I can at least eek out a few hours before I have to take anything.
Just to chime in on a conversation I mostly slept through -- my oncologist gets blood work 30 minutes before infusion. They just told me to show up early so they could run it before they start with the chemo.
I have lost 10 pounds in a week. I have the weight to lose and I'm not going to cry over it -- but it's still really fast. Food doesn't sound good. I am tracking what I eat and I make sure I eat several times a day, but with no appetite and an iffy stomach, the best I can do is usually something small. Water also doesn't sound good right now either, which is of course a problem with the diarrhea. I'm having better luck with gatorade cut with water than I am straight water, but I might order some sort of water drops to see how those work instead.0 -
Good morning, friends, I’m about to go in for cycle #2. They drew blood on day 9 before a bag of fluids (my MO orders fluids about a week after chemo and again about five days later, and I’m encouraged to come in for fluids as needed) to see how my blood chemistry was responding to the chemo. All was well, but I’m assuming they’ll do another draw this morning since it’s been almost two weeks. I can go in a day or two earlier but they’re discouraging that because of covid—they want as few exposures as possible, I think. For me, it’s not worth the time and energy to figure out child care just to save a little time on infusion day.
I started shedding lightly over the weekend but it was upsetting and made me avoid showering (which I’m sure everyone around me enjoyed!) so I had my five year old give me a haircut on Monday (with repeated reminders that this is the ONLY TIME she can use real scissors on real hair!!) and I can not recommend this idea enough. If you haven’t shaved yet and you have children in your life, let them cut your hair. You will be EAGER to shave it after that!!! Ha!! She actually did a really great job and in a certain way it was cute, but “great“ and “cute” are relative terms. She kept giggling and whispering, “I can’t believe I’m doing this to my actual mommy!” It was adorable, and I didn’t lose an ear! My husband shaved it for me a day later, though I took the first few swipes. And actually I really like how I look with it shaved, although I had no idea how much gray hair I had hiding under there! I’m rocking the shaved look today, though bringing a hat for coziness. Not sure I’ll feel the same about fully bald, but I hope so, as it’s easier than a wig!
Regarding nausea with drinking, great suggestions have been made (water drops, IV hydration, zofran, etc.) and I just wanted to add my two cents that heartburn can feel nauseating. I’ve had heartburn since I was a teenager so I know what it’s like, but this chemo-induced bout felt very different. It also doesn’t always have symptoms (or symptoms you’d think to connect to heartburn), and it’s easy enough to try one of the OTC medicines like Prilosec for a few days (after checking with your doctor, of course) to see if it makes a difference. Something to consider, as a lot of these meds attack the whole GI tract.
Wishing everyone peace and hydration!
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Hi everyone! I haven’t checked in much this 2nd cycle. My next infusion is Aug 20 and last time I was feeling so much better by now. That is frustrating. I have had much more diarrhea this time which is mostly been managed with Imodium but requires me to be close to a bathroom and really needing to increase my hydration. I also broke out in a chemo rash all over my scalp and nape of neck. It is really itchy and uncomfortable... and it’s unbearable to put a wig or anything on top of it. Between these two SEs it’s been a bummer of a week. I’m trying to get by each day and look for some small win. My daughter brought me over some coconut water.. I didn’t really like it before but strangely it seems refreshing to me now- I usually dilute it a bit with water. At least it is something different. With heartburn I really have not been able to drink carbonated beverages or juices. Take care everyone. I’m hanging on to the thought of the halfway mark next week
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Melbo...I agree 💯% about the young mothers. I too applaud them! I haven't done a thing all week. Hubby makes his own supper, cleans up and I sit on my couch. Maybe I need to just buck up and suck it up. Anyway to all you gals with little ones please know you are true champions in this cancer fight. I couldn't do what you are doing!!
AnnaTheBrave...love that you little one cut your hair!! My granddaughters had fun trying on my wigs. I think it takes the scariness out of the hairloss for everyone. I really need to shave mine too.
Trynryan...that rash sounds miserable. Hope you find some relief. My oncologist asked me twice if I had any rashes. Maybe it is one of the side effects that fasting prevented. Halfway there sound so good!!!
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Anna, I did the same thing with my little one! I think it helped him be less afraid of mommy not having any hair! I am completely bald now, as I decided to clean shave what was left, and feel so much better! I actually started walking around the house with nothing on my head because the headscarves were making me too hot! I think everyone is pretty used to the way I look now, although I can't WAIT until my hair starts growing back, lol. Short (or bald) is just not for me.
Tryryan, my second infusion was also worse than my first as far as side effects go. Everything seemed to last longer than the first time, but once i hit week 3 I felt better than I did on week 3 of my first round.
I had my 3rd round yesterday and feel great so far. I know what is coming, but I am trying to just enjoy feeling good while I can! I have done about zero exercise these past few weeks because it's been too hot to go outside. And I'm not comfortable in public without a wig on and there is NO way I'm exercising with a wig on my head. So I ordered a stationary bike for my basement and I love it so far! It helps me stay active, which I hope will help with SEs, and I don't have to worry about leaving my house!
How have you ladies been doing with exercise?
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TrynRyan, I was told that if I develop a rash on my head and neck, my MO would call in an rx for a topical gel that knocks it out fast. I think it’s clindamycin.
Smichaels, yay for kid cuts!!!
I have to say I kind of enjoy chemo day! I love just sitting there and having other people take care of me! I read, I colored in my coloring book, I texted with friends, and do you know how many people interrupted me to ask if I ould share the coloring book or to tell me that their bottom was itchy and demand answers? Not one—not even one person!!! But as soon as I walked in the door... 🤪😂🤣
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Yes! I can't agree more - I am in awe of the younger mothers who are parenting through chemo. True that we don't know how strong we are, until we need to be.
To those suffering through diarrhea with their chemo - my heart goes out to you. It is so dehydrating and takes a toll on the body. Prayers going up!
I am scheduled for an early morning (9:15) blood draw and then MO visit, then chemo at 11:45 ... my 3rd round of AC. This cycle has been tough, between the migraines last week and just the general lack of energy this week...I am dreading tomorrow. I wish I could have a few more days of "normal". My hair really started falling out on Day 3 of this cycle, so I'm almost bald. I discovered that if I wear a beanie to sleep, my head doesn't bother me nearly as much during the day. I guess my "noggin" doesn't appreciate the A/C as much as the rest of my body. LOL!
I wish I could be more active in this group - but I really just haven't had the energy and Days 1-4, my brain fog, difficulty concentrating and my cross-eyed vision just make it so tough to keep up. I love catching up as I work toward the end of the cycle and see that everyone is doing "well" overall.
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Thanks for all the encouragement! I am a mother to a 6 year old boy and 3 year old girl. We are in the thick of it and life doesn't stop with a cancer diagnosis. In a way I'm glad I am busy with the kids.
Annathebrave and Brittonkb-love that your kids got in on it! My 3 year old picked up the clippers with dad to buzz my hair. The older one didn't want to get in on it but he was having some emotions about it.
Annathebrave-I know what you mean about loving the peace and quite on infusion day. Nobody is yelling mom a million times when dad is right next to them or mom come wipe my butt 🤣
Kimitx-delays are frustrating! Hopefully the injection will be what you need. I got my blood work back today and my liver is "Irritated" so we will see if it is going to change my infusion tomorrow.
As for me-I had an appointment with the integrated health doctor at the facility and it was really good! I recommend it to anyone who has access to it. I got lots of recommendations on how to treat side effects. I went out and purchased the supplements today. She put me on milk thistle because my liver was irritated, glutamine for the neuropathy, a probiotic and I chose to go on a multivitamin. It was a great appointment.
I go in tomorrow to get my 2nd infusion and I am going to ask about making the infusions longer to help with side effects (or I will ask about it). As for the hair, I am actually warming up to the buzzed hair cut and went to the store with no wig on. Someone actually gave me a compliment about pulling the look off🤣. Not that I have a choice but it was a nice compliment after being on edge with no wig.
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