November 2019 Chemo Club
Comments
-
OK. I woke up with a headache so bad that it is the only thing that I can think about. I've been laying still with my eyes closed for hours. Also, the flu like aches have arrived. This is not a good day.
0 -
Dixie, you and I are going to have the same TC treatment. Mine starts next Wednesday, the 20th. So I am following your posts with extreme interest. I'm so glad to hear that so far it doesn't seem bad - for both your sake and mine! Fingers crossed that that will continue to be the case for you.
Are you coldcapping, or cold-hand-and-footing? I'm planning to do all three, though just a poor-man's version of the coldcapping since I can't afford the real thing and don't care that much about losing my hair. I just want it to be able to grow back.
0 -
Hi, Karen. No, I'm not cold capping, or hand/foot. I thought about getting some freezer packs and putting something together, but I didn't.
Today was a little rough, but I was expecting it to be. I think my issue is while I'm not nauseous, I am turned off of some foods, and have a smaller appetite. Because of that, I ate a small lunch yesterday, and a smaller dinner. I suspect that I should've eaten and drank more.
0 -
I do think I may need to do something about constipation soon. Do any of you have suggestions for something a little more gentle than a laxative?
0 -
Hi Dixie. I’m going to ask a stupid question here. Can you take Tylenol for your headache
0 -
Senokot (or anything containing Senna) is a very mild natural laxative. You take it at night and by the morning you should be good to go. You can find it in any drug store or health foods store.
0 -
I take tylenol for headaches. My Dr., and his nurses, suggested it.
Charlie, enjoy your weekend, I'll be thinking about you on Monday.
0 -
How are you feeling today Dixie? Is it Day 5??
0 -
Chemo day was Monday for me. Is that considered day 1? If so, today would be day 6.
Today is much better for me. I still feel weak, but I suspect that won't go away.
Thursday was the hardest day.
No nausea at all, and I did have an appetite, but since it felt like the flu to me, I preferred eating foods that I would want while sick. Everything still tastes the same.
I'm lucky to have my husband and teenage sons to force to come with me when I leave the house. I do need to sit down quite often. I even tell my husband when I'm going into the shower just because I want him to listen for me falling LOL. I haven't, but it's possible with the way this feels.
So, weakness, and headaches were my biggest side effects to deal with so far this week. I'll let you know how the next two weeks of no chemo are for me.
0 -
Had my port implanted yesterday via my armpit. Pain isn't too bad. Scars don't look bad either. (Yay me!) My cheeks are flushed this morning and wondering if it's a reaction to some med I received (I was completely knocked out). My first A/C infusion is Thursday. Ready as I can be!
I've been researching potential benefits of fasting and want to try it, but 3 days of only broth/liquids...dunno if I can hack that. Anyone looked into this?I was offered a clinical trial to test a new anti-nausea drug specifically for people receiving Red Devil/adriamycin. I accepted with an emphatic YES (science, ya know). So far, 10 people have participated at my hospital and all have experienced ZERO nausea! It's a blind test, so I could just get the placebo round one, but for rounds two through four I will have the option to receive the trial drug if I want. I'm super excited about this as nausea is my number one fear!
0 -
Butterfly - We are on the exact same regimen. DD A/C every two weeks, then DD Taxol every two weeks, right? I hear your constipation fear. How’s that going? And the Claritin, do you think it’s helping?
Dixie - Sounds like you hit a wall. I hope your headache and flu feeling are better and your two week break allows for daily improvement! Did you ever get the Neulasta?
Charlie - Best of luck Monday! I’ll be pulling for a smooth first time! Please check in if you can. And enjoy that private room!
RAD - Good tip on the alternative numbing cream!
MAC - Sorry you’re dealing with Medicare red tape. Navigating coverage limits and trying to reign in costs is a whole nother aspect of this battle!
Owl - I was glad to hear your input on minimal port access pain. Encouraging! How you feeling?
Karen - You’re starting a day ahead of me. I’m trying cold hand/feet treatments when I start Taxol in a few months. My center is not supportive of cold capping and it seemed too much hoop jumping so I decided not to pursue it. What brand hand/feet covers are you using? Good vibes coming your way!
Eigna - Ah, the lovely shell shock of the “you need chemo” bomb. I was floored and numb at first too. Hope you’re adjusting to the news and researching how to muster through. These boards are so informational, more than my doctors even!
Stay in BEAST MODE girls! This is temporary
0 -
I did get the Nuelasta shot, and that's the reason why I came back to post LOL. I forgot to take a Clartin last night. I've been taking one at bedtime for a week. I took one this morning around 6:30am because I woke up to a dull throbbing at the base of my spine, and thought 'this is it'
It wasn't bad at all, and I figured it would just go away. Now I'm experiencing the bone pain. Mostly in my pelvis and lower back. It makes walking a little slow for me. I don't know if this is just the day that nuelasta side effects start kicking in for me (I seem to remember reading a blog of somebody who had experienced it later in the week), or if it's because I missed a dose of Clartin. On the bright side, at least my side effects are staggered out, but now I've got this weird pain.0 -
hi am new to the forum and new to chemo. Had my first chemo - dense dose AC Nov 8 and a port installed yesterday (took a little bit to get that booked) so next session Nov 22 will be with the port. Am taking Filgrastim shots and while I don't like needles they seem to perk me up pretty good about 4 hours later so are not as dreadful as I imagined.... can I be imagining this?
0 -
Lisa - I am going to be using Icinger mitts on my hands and NatraCure cold socks on my feet. I bought bothon Amazon.
https://www.amazon.com/gp/product/B077R9LFMJ/ref=ppx_yo_dt_b_asin_title_o05_s02?ie=UTF8&psc=1
https://www.amazon.com/gp/product/B003L4WONS/ref=ppx_yo_dt_b_asin_title_o05_s01?ie=UTF8&psc=1
Jackster - as "real" cold caps are too expensive for me, I am doing my own DIY version with migraine caps I found on Amazon as well and dry ice.
https://www.amazon.com/gp/product/B07GQ5RNJ/ref=ppx_yo_dt_b_asin_title_o04_s00?ie=UTF8&psc=1
I don't care too much about losing the hair I have now, but would like to keep my follicles protected enough to grow it back when treatment is done. I'll keep everyone posted on how it goes.
I'm also worried about keeping up with all the additional drugs - steroids, lidocaine for the port, anti-nausea pills, Claritin, fluoride treatments, etc. - when I have chemo brain. My brain is already addled enough and I haven't even started yet!
0 -
Day before my first chemo treatment and I am feeling quite anxious and miserable but I am determined to make the best of it and have a relaxing day and try to keep my mind off it. I appreciate reading your posts on how it's going for you and I will add mine too. Sending out all the strength and positivity I can for each and every one of you.
0 -
Good luck Charliebug for tomorrow!
Keep fighting all of you. We can do this!
I’m meeting with my oncologist tomorrow so I will have a plan in place and i will be able to join you in this phase of our journey. I’ll post tomorrow evening with my details of chemo treatment.
0 -
My tongue is white. I noticed it yesterday. No sores or anything, but I can see how that might occur. It's just tender. As if I were a kid who sucked on too many sour candies. I bought a six pack of soft toothbrushes, and planned on using a new one each week. I just threw my first one away. You can find them cheap at Walmart. I also started gargling with the salt, baking soda, water mixture that everyone mentions. No problems with constipation anymore, it's almost the opposite now. Almost.
I need to drink more water, I know that I wasn't getting the reccomend amount. But, I slept a lot this past week, and my appetite was that of a sick person. I was hungry, and I did eat, but it was smaller portions of basic things.
Today I felt normal, aside from not being as energetic as I usually am. We went to the mall to walk around. And, I had enough energy to do some laundry. I'll probably sit down to fold everything, and I'm sure I'll need help putting sheets on the bed, but it's nice to be able to do something myself.
You read horror stories online, and perhaps I have some in my future, but so far so good Thursday was my hardest day. If 1 is nothing at all, and 10 is hospital, I'd rate Thursday at a 4, maybe. I'm not looking forward to doing it all over again, but it's manageable.
0 -
Charlie, I wish I could sit with you tomorrow. I'll be thinking of you.
0 -
Dixie02 - thanks for letting us know how it feels after your first treatment. It helps get a sense of what’s coming up.
0 -
So, my first chemo treatment was Wednesday and I was able to work on Thursday and Friday. Felt ok, just a little fatigue and mentally a little slower than normal. My plan was to take it easy this weekend and be back to work on Monday. I'm not gonna lie, it was kind of a rough weekend. Not much nausea, and the meds they gave me took care of that. I am just so tired. It feels like I have the flu, my muscles are aching. I tried to make myself get up and do a few things around the house, but I mostly could just sleep. And even when I woke up I didn't feel rested.
Hopefully I am over the worst if it now. I am trying to be not so hard on myself, but it is difficult to remind myself to take it easy.
0 -
hello ladies,
I hope that you will allow me to post here. I am from the May chemo group. I have endured lumpectomy with IORT, then another surgery for unclear margins, then 4 rounds of T/C, then 3rd surgery to clear residual DCIS, then 16 rounds of radiation. Been through it all, so to speak.
Anyway, I wanted to share some tips on how I dealt with chemo. My first 2 treatments were a nightmare. First one had a migraine, nausea and fatigue that lasted for a week. I could not leave the couch. The second treatment gave me the migraine with body aches and fatigue that were very hard to deal with as well. Both times the symptoms came on day 3 after chemo and lasted a week. I swear that I was going to stop the last 2 treatments. Anyway, I was told by a person on another thread that I could ask for an extra large bag of iv fluids during my chemo infusion. I also was informed that I could ask for a 10% reduction in chemo dosage, which my MO agreed to both. I swear that they go overboard on dosage for the first couple of treatments. Anyway, this helped me immensely. I was at least able to tolerate the last 2 treatments. Symptoms were tolerable at least. I also took Zofran for nausea, dexamethasone and Claritin and wore the Neulasta patch for the first 3 treatments. I kind of wondered if the Neulasta caused some of my issues as well. Oh, almost forgot to mention the importance of staying hydrated. I had to force myself to drink 2-3 liters a day, but it sure does help. Anyway, best of luck to all of you November warriors. Feel free to PM me if you have any questions or concerns. It is a tough road to navigate, but you will endure and it will come to a conclusion. Stay strong. Pat💞
0 -
Hi, Lisa! I am doing the 4 DD-A/C every two weeks, then I'll have Taxol every week for 12 weeks. Friday will be my second round.
As for the constipation, I was taking 1 Senecot in the morning and 1 at night beginning Friday (day of infusion). Starting on Tuesday, I noticed my stomach was pretty upset, so obviously I stopped the Senecot. Come Wednesday, I had diarrhea something awful! 😳 I am happy I wasn't nauseated because I was able to drink tons of fluids (on top of water, I was drinking a couple of 32oz powerades, sprite, and lemonade). I absolutely did not want to get dehydrated. I didn't have Imodium on hand (because I didn't think I'd need it with these rounds). Thankfully, by Thursday afternoon I was much better. My problem is now I don't know for sure if it was the Senecot or the chemo, so we will see this next round I guess🤦🏼♀️ I have Imodium on hand now just in case!
I honestly had no pains at all from Neulasta or anything else. I did start taking Claritin the day of treatment, so I'll definitely do that for this next one.
This past Friday, I was given a shot of Lupron to suppress my ovaries. Anyone else had that? So far no side effects, but it's only been a couple of days.
I will say that Friday morning (one week post chemo) I woke up feeling 100% myself. I felt good on Thursday, but Friday was even better. Hopefully this next round I can continue the pattern of 1 week crappy and 1 week great!
Wishing all a good week ahead!
0 -
Dixie,
I start my TC Wednesday and was hoping I'd be able to work Thursday and Friday. Hoping my worst days will be Saturday and Sunday, then be able to go back to work Monday, or Tuesday at the latest. Does that sound reasonable from your experience?
0 -
Upstate - so sorry that your first two TC infusions were so horrible! And I'm very appreciative for the tips of asking for an extra bag of fluids and having the doctor reduce the dosage in those circumstances. Just out of curiosity - did you coldcap during your infusions? I've heard one or two people say that they did not get headaches with their TC and think it might possibly be due to the cold caps. No idea if that is true, but wondering.
0 -
Karen, so far that's been my experience with the timing of the side effects. My infusion day was Monday, and my worst day was Thursday. Your body won't want to be very active, so it's good that you'll have the weekend to relax and not have to worry about time commitments. Is your cycle every 3 weeks?
0 -
Dixie - yes, one infusion every three weeks for four infusions. I have basically told my office that I will be playing things by ear for the first three weeks, as I have no idea how my body will react. That's going to be hard, as I work in a very small law firm (two lawyers and two paralegals, of which I am one), and my being randomly out of the office will make things difficult on everyone. But hopefully I won't have too many "can't get out of bed days" and will at a minimum be able to do at least some work from my laptop at home.
0 -
hi Karen2019, My experience was like Dixie's. First 2 days not too bad, but you must really be diligent about hydrating. My days 3 to 5 were probably the worst. No, did not do cold capping. I wanted the chemo to do its job head to toe. Also, didn't feel it was worth the extra time and expense it took. My hair is at a pixie length now 4 months post chemo. It is growing in nice and thick as well. Your local Cancer society will provide you with a wig at no expense. They were very nice to me and took a lot of time fitting me with a wig close to my natural hair color and style. I will be praying for you on Wednesday. Will you take radiation then anastrozole post chemo? I am doing fine on anastrozole with no se's. My onco score was similar to yours, 48!! Both MO and SO did not expect that. Oh well, that is why chemo is indicated for us. I actually met with the pathologist who read my slides. She let me see them as well, and told me that those of us with higher onco scores are probably getting closer to a 24% absolute benefit in reducing recurrence. That made me feel a lot better about taking chemo. Best of luck to all. Pat
0 -
Pat - that 24% absolute benefit is very encouraging! Thanks for sharing that! I'm also glad to hear your hair is already pixie length after four months. I would love to be out of the wig/hat phase by late spring/early summer, so fingers crossed that my hair comes back at that rate too.
Yes, I will be having radiation after the chemo, and then Tamoxifen, because I am not "officially" in menopause yet. My MO says she may switch me after I've been an entire year with no periods, so it sounds like I'll get the joy of both drugs!
0 -
Back from my first chemo treatment and I have to say- not bad...not bad at all. As promised, I did have a private room and my fiance was with me but he won't have to be going forward as it's really a piece of cake. So far no side effects (other than red pee from the Red Devil) but I know that can change quickly so I'll keep my fingers crossed it will stay that way at least through tomorrow. The nurses were lovely and we even got a sandwich and cheese as we were there through the lunch hour lol! Great service!
The nurse colour coded the pill bottles and gave me a sheet with the matching colours showing me when to take the pills so I can keep on top of the nausea. I will give myself the injection for white blood cells on Wednesday. I know I am on a happy high right now for getting through the first one so seamlessly. I hope my spirits can remain up through the hardest parts as well but time will tell.
0 -
Karen and Dixie02 - met with my oncologist this afternoon and looks like I’ll be joining you in a few weeks with the same treatment as you:4 rounds of TC ; one round every 3 weeks.
0
