Starting chemo September 2014
Comments
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Gosh I think chemo causes crying. I cry at the drop of a hat lately. I wonder if we can lmake this a side effect? I see a lot of you are dealing with mouth soreness. My chemo nurse recommended a mouth wash with baking soda and salt. So far it has helped me avoid the soremess. An additional benefit had been taking away the miserable taste in my mouth.. Hope this helps some of you. Love, Jean
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Hello all! I haven't fallen off the face of the earth--just been buried in boxes! I officially "finished" my new apartment last night! Only took 7 days, and i really pushed myself harder than I should have, but thanks to the help of my amazing friends, it is home. Curtains are hung, pictures on the wall, we even have some Halloween decorations hung up! I wanted it all done before my chemo this week, so I can collapse guilt-free if I need to.
After my horrible reaction to the Taxotere, and only receiving the Cytoxan, I had a relatively easy time with SE, until this past Thursday. I have lost about half of my hair since then (it is very thick, so if you didn't know me, you probably wouldn't notice) and the fatigue has been overwhelming. I did almost nothing on Thurs and Fri, other than get my son back and forth to school. Fri evening, I decided a hot bath would be nice, and realized I had bruises all over my legs that hadn't been there that morning. I look like somebody whacked me with a hammer. One bruise was huge and painful and multi-colored, and I knew I hadn't hurt myself. Called in and the onco on call suggested I go to the ER for blood work to check my platelets. Had to ask the soon to be ex to take me, and he was very unpleasant about it. Had blood work, chest xray and US to rule out a clot, and everything checked out ok. Medic blew a vein taking blood, then had to have a 2nd draw because he didn't get enough! Ugh! The ER doc was a two time cancer survivor, and he was so compassionate and understanding of my worries and fears, and talked to me about "the new normal". (Gag, I am coming to hate that phrase!) He gave me his card, and told me to call him if I need to. It was nice dealing with somebody who gets it, and doesn't think I am being a drama queen over some bruises and tiredness.
Yesterday was my little man's last soccer game of the season! So glad I made it through all of that. It was a gorgeous day here in Cleveland, and we also got to watch the Browns beat up the Steelers! Made a pot of chili, watched a ton of football, and enjoyed spending the day with my kiddo.
The good news is that I get to skip the blood work tomorrow, and just meet with MO, then do the AC infusion on Weds. Praying this one goes much more smoothly than the last one, and involves no anaphylaxis or dramatics!
To those of you dealing with mouth sores, I am sorry. I am prone to cold sores, especially in times of stress. (Hello, breast cancer, divorce, and moving! LOL!) My dentist, who is also a family friend, recommended using my son's kid toothpaste, since it is gentler, and then rinsing with the Biotene. He actual;y told me to stay away from flossing unless I have something stuck between my teeth. I have also been using copious amounts of lip balm. So far, so good. Unfortunately, I am developing a cold sore right inside my nose, which has been a bit drippy, but I am hoping the Abreva knocks that out fairly quickly.
Wishing you all a wonderful SE-free week!
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PoppyK, so sorry to hear you're having a rough day. My next treatment is Fri and it's surprising to me how much it's already weighing on me. Like you, I don't want to go back to the chemo brain, fatigue, and nausea.
Even though I'm using the Biotine mouthwash, I still wake up in the middle of the night with extreme dryness.
Barremom, I've got the same question. Not sure if it's the chemo or Neulastra.
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Oh look at all of the goodies at look good feel better you should check out if haven't already
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Poppy....feeling for you! Must have been a hard weekend. Hubby home? Maybe he can coax the kids to dote on you? Well deserved you great mama you!
Kris. La, like Poppy, I have used the baking soda and salt since first chemo and it has really helped. I also use the homemade toothpaste with coconut oil, baking soda, liquid stevia to taste, and peppermint oil. I found it from someone here. The. I use a little of the dey mouth toothpaste also.
Oh, and use coconut oil on lips
Anyone have skin AROUND nails peeling?
My mood was weird today too. Went to work with my wig. Staff truly did love it. (2 know) said the highlights and style make me look years younger. BUT it was uncomfortable! Took thing one (oldest twin) to lunch, only to have him call and say his car broke down.
So off I went....both boys have older cars as they only use them when home. Hot hot hot...whipped off wig ASAP. Then just felt blue all afternoon. Out of sorts. Hate it.
LA could be am subconsciously dreading 2nd tx.
Will definitely look into cotton caps.
Hugs sister warriors
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I use aquaphor on finger and toenails after my shower and so far no nail problems. Love, Jean
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Had the strangest experience tonight. Took my son to his first PSR class at our new parish. I was waiting for him after class, because I wanted to speak to his teacher and see how things went. Standing around with a whole bunch of parents I don't know, feeling self conscious about my banged up looking legs and baseball cap to hide the rapidly thinning hair, looking at all the moms with their cute haircuts and highlights, and just generally feeling like dirt. (I know it's just hair, but you know...) In walked a woman about my age, wearing the most beautiful scarf, and she looked so self-confident and just had this amazing sparkle in her eye. She smiled at me, and I introduced myself, told her I was new to the neighborhood, and asked where she got her lovely scarf. She looked at me kind of oddly, and I raised my hat a bit and said "breast cancer". She touched her scarf, and said "breast cancer". Then we both cracked up! I'm pretty sure the other parents think we are nuts! Turns out that our boys are in the same PSR class, and she has the same onco that I do, although she is a bit ahead of me treatment-wise and on a different chemo regimen. So we exchanged numbers, and agreed to meet up for coffee next week, if we are both up to an outing.
Ironically, when I asked my son what they did in class tonight, he said they were discussing the ten commandments. I asked him what they were and he said you can't kill anybody or steal anything, and you shouldn't be jealous of what other people have. Guess I need to work on that whole coveting my neighbors goods, aka hairstyles! LOL!
It's strange, because I don't think I would have dreamed of approaching this woman before being diagnosed. I would have felt pity for her, but awkward and unsure what to say. Now I seem to notice other people wearing scarves, and I know it's nosy, but I want to ask what they have, how they are, what their treatment plan is, offer them encouragement or support, etc. My new friend said it's kind of like when you get a new car, and then you see the same model of car everywhere! Suddenly, you pay attention because it has meaning in your own life. This cancer thing really does change your way of thinking.
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Wow, reading through the day's posting I can't help but think to myself, what a courageous group of women. I'm proud to be a part of this group.
I had a good day yesterday and feel even better today. I am extremely tired. Funny how I fall asleep at the drop of a hat. I think to myself, gee, I'm tired and the next thing I know I'm waking up from a deep sleep.
I'm worried about the next phase of chemo, too (taxol). Thinking of going every week for 12 weeks is frightening. I've really needed the every other week off just to recoup from the chemo. I can't imagine not having that week off.
badhairday: I have a very simple philosophy on life - 1, live and let live and 2, God provides. Simplistic, but it has always worked for me. Your posting re-enforces it to me. I don't think it's coincidence that you met another cancer survivor at a PSR class.
About mouth sores, I'm not having the problem but just wanted to say my doc also suggested the baking soda and salt mouth wash.
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Silver lining: no shampoo + no shaving = much quicker showers!
Has anyone on TC started loosing eyebrows or eyelashes? I have not and would love it if they stayed.
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LARock- Just finished #3 of 4 TC. Eyelashes thinned but not completely gone, can still use mascara if I wanted. Eyebrows thinned also but are fine especially with a little pencil. I also did not loose all hair below, under arms or legs yet. GO figure. I have the Latisse script ready to go, just waiting to see if insurance will cover since my doctor appealed their first denial, stating that I needed for medical reasons. Had eye infection a few weeks ago.
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Kalarose, I am on the same regimen but finish the last round of A/C on Monday, then on to weekly Taxol. I am also a bit concerned about weekly but I guess it isn't as bad as the A/C or they wouldn't give it weekly. My chemo doc said I wouldn't need the neulasta either. I will also be getting herceptin / perjeta every 3 weeks along with the taxol. Hoping and praying we both do well with it. Love, Jean
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Today has definitely not gone the way I expected. Got to skip labs this morning due to my blood draw in the ER last weekend, so yay for no needle first thing in the morning! Met with my oncologist, and she has decided that my veins are very angry right now, and suggested I have a port installed before AC tomorrow. I just couldn't do it! The thought of anybody touching my chest or leaving yet another scar there literally makes my skin crawl! So we compromised, and I had a picc line put in this afternoon. So much for my needle-free day! It really wasn't too bad--the anticipation was definitely worse than the installation! (Apparently, if you blow a vein during infusion, the Adriamycin can burn to the point of needing plastic surgery!?!? I feel so great about pumping that stuff INSIDE my body now!) So, hopefully I have a needle-free day tomorrow, and a non-eventful time in the chair. My soon to be ex is taking me tomorrow, because my onco suggested I not drive myself, just in case. I think I scared her last time! LOL!
I didn't sleep very well the last two nights, because I let my Ativan script run out, and the pharmacy needed permission to refill. That, plus the worry and stress and dread of the next chemo, plus the usual worries of life, doesn't make for a very relaxing night designed for sleep. The very great news is that I now have more Ativan, and my doc said to skip the Decadron, because nobody is allergic to Adriamycin. We'll see--I plan to have my epipen and my inhaler in my lap when the infusion starts! Planning to hit the sack early, and try to go in to tomorrow with a decent amount of rest, a good breakfast, and a healthy attitude. And if the husband decides to be a pill, those nurses will chew him up and spit him out! They are feeling a bit protective of me after the last chemo incident.
Hope everybody is having a peaceful day, and that the mouth sores, and hot, itchy heads, and nausea have all subsided!
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Sorry to double-post, but I wanted to let you know about this sweet, adorable man that was at the cancer center today. He was about 65-70 years old, and judging by his boots and jeans, he's a tough, Harley guy. He was wearing a shirt that was obviously a homemade gift. It was a white undershirt, and all over the front of it were pairs of handprints, from teeny tiny sized to teenaged size, in all different bright colors. On the back was a pair of wings, kind of a cross between Harley wings and angel wings, and the sweetest little poem about how all of his grandchildren were holding him in their hands and loving him through his chemo. This big, tough, biker guy was showing off his shirt so proudly. Apparently, the grandkids all wanted to come to chemo with him, and they were upset that they were deemed too little/young to accompany him, so this was their way of showing their love and support. He promised he would wear it to all his treatments. It was the cutest, sweetest thing and several of us were wiping tears from our eyes. (Whoever said upthread that crying must be a SE of the chemo has it right, I think. I find myself crying over everything these days!)
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Kayarose and zjrosenthal - I do weekly taxol herceptin. SEs are more annoying than debilitating - achy, headaches, sore nose maybe some nosebleeds, fatigue - generally like you are coming down with the flu but also have a major hangover. Taxol can be hard on the nails and also cause neuropathy. I massage tea tree oil into my cuticles twice a day, use a nail hardener and paint them black to avoid issues. Others ice their fingers and toes during treatment which is also supposed to help with neuropathy. I'm cold capping so no more ice for me. I also take 30 mgs of l glutamine, b6 and b12 which helps ward off neuropathy. Taxol isn't hard. You may even see your hair start to grow back sometime during your treatment.
Whatever you do, or anyone here, don't worry about what the next phase of treatment will bring. Deal with what is going on today. Worrying is like praying for bad things to happen.
Tomorrow is number 7 for me. Getting to the homestretch.
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Hello Fellow Fighters, went for my 3rd A/C treatment today, chemo center was very busy, my MO was called away for a death in his family, so I saw a sub MO, with my permission of course, I really liked him, he was very informative, we talked about my hairloss, because I still have some of mine, he said not everybody looses all of their hair, I may have to go for a fuzz trim, lol! I had to wait for a chair today, so chemo started late, port wouldn't give blood so I had a peripheral draw, nurse got me on the first try, YAY! When I finally got a chair, I was a little pissed off, a visitor was occupying a chemo chair, she was napping so the nurses didn't want to wake her, HELLO, wtf? Feeling good so far tonight, just a little gas, but otherwise ok. Sucked down my ice water and ice chips during Adriamycin- so far I haven't got any mouth sores, knock on wood, hope to keep them away with the ice. On to neulasta tomorrow. Claritin is onboard. Hope everyone has a good day tomorrow and an even better rest of the week! Hugs to all!
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Best wishes for a peaceful, restfull night to Rose and Badhairday.
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Daniella - Home stretch for us! My chemo #3 is today too.
Thanks to steroids, I cannot sleep and am feeling restless. I took ativan but didn't seem to help. I'm going to watch a movie to get my mind off of it. Hope everyone is resting peacefully tonight.
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Good morning fellow warriors. Rose, I am glad your #3 went we)l. My last A/C is scheduled for Monday. Hope your sides are easy this round. I am going to try for the silver sneakers class at the gym today as I have been a slug since last Monday. Then off to meet pregnant granddaughter for a meal. Feeling good yesterday and today. Love, Jean
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Headed off to my AC infusion in just a bit. Got a bit of sleep, had a banana and coffee, and just have to get the little man on the bus for school. Hoping for a smooth day!
Just want to tell all of you how much you inspire me. Some days I feel like I can't possibly do this, and then I read about you all visiting family and walking dogs and exercising, and I think, oh yes, I can! So grateful for this place to share our trials and victories, and help each other weather through the storm! I just want to say thank you for the advice, support, and gentle kick in the tush when I need it! Hope we all have a peaceful, SE free day!
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For those of you trying to work during this process, check out your company's short term disability benefit.
I have the advantage of having a very supportive employer, I know not everyone is so fortunate, but my HR person was quite proactive. She literally badgered me into filing a claim. I have been with the company for a long time so I am eligible for something like 26 weeks of STD at full pay, and much to my surprise it can be taken intermittently. So, my treatments are on Tuesdays, and I basically take the rest of that week off to recuperate and then return to work the week after. The days I miss are charged against the disability claim and the others are just regular wages which obviously stretches that 26 weeks out a lot.
Next week is my last AC infusion, then I switch to the weekly taxol. I'm going to try switching to Friday treatment, and then see if I'm up to working a four day week. If that works it would be lovely, I hate lying around feeling miserable doing nothing. I'd much rather go to work, even if I'm not as productive as I'd like to be. Either way, it's nice to know that I have the security of a steady income should I have to throw in the towel and go on full time STD.
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ah nice story badhairday 😊 i ran into the cutest elderly woman at the lookgoodfeelbetterclass she came in with a turban n no make up, she volunteered to be the model for class n came out looking like mrs hollywood 😊 they even gave her wig!!! They offered one to all of the participants but hers came out so perfect!! So nice she has the best attitude
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DaniellaD, thanks for the good info. I am trying to stay focused on what's happening now but sometimes I can't help but wonder what is to come.
I was sorry to hear about the nails. For some reason, the AC tx has been great for my nails. The last year or so, I've had nails that get vertical ridges and then break off. Right now my nails are the hardest they've been in a long time. Oh well, chemo gives and chemo takes away.
My side effects from AC have definitely not been as bad as I anticipated but I really start feeling better the second week. That's why I'm worried about moving to a weekly tx. One SE that drives me crazy is my runny nose. I normally have a few sinus problems and pop a sudafed for it but that doesn't work. I can't go anywhere without some kleenex in my pocket.
Thanks again.
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Well, I made it through my AC tx just fine! All that worry and stress for nothing! The nurses were teasing me, because I had my stuffed kitty and blankie (my son's loveys that he sleeps with and insists I bring with me for comfort!), my epi-pen, and inhaler all lined up on the table when infusion began. Needed none of it. I did experience a bit of a queasy tummy during the infusion. Had some chicken salad and crackers at the tx center, then took a compazine when I got home, and it seems to have subsided. I am soooo sleepy, tho. Fell asleep as soon as I got home, but was woken up by the pharmacy tech delivering all the supplies for my picc line care.
Trying to decide if I am up to taking my son to his support group tonight, or if I want to be a slug and leave him with his dad for the evening. Have to go in for a dressing change and Neulasta shot tomorrow afternoon. Not really sure what to expect as to how I will be feeling in the next few days.
Found out today that my tx cycles will be changing. Originally, I was schedules for 4 TC cycles, three weeks apart. The first one went so badly that I ended up only getting the Cytoxan.. Today was AC#1 of 4, but I will be receiving it every two weeks, rather than every 3. Not sure if any of you have experience with that, and can share what you went through as far as SE and timing of them, etc.
The good news is that by doing it this way, I will be finished with chemo the day before Thanksgiving! I may need to have an ooph or hysterectomy and can possibly do that by the end of the yearl. I have a $5000 deductible that kicks in on Jan. 1, but more importantly, I think it would really help me to start off the new year with the worst of this process behind me, and only have my reconstruction to look forward to in the coming months. I know I will still have a lot of recovering to do, but knowing that the hardest part is over, and that I will be getting better and better every day will do a lot for my mental health!
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Kaya....same here! I was in grocery store after work today and has to buy more Kleenex and open it. Do you have a dry cough? Eyes weird?
Bad hair...kudos friend!!!! Great attitude! I had laproscopic hysterectomy in July ......not bad at all
Sybil...I will check it out ! I have STD but I THINK it kicks in after PTO
La. Ready for Friday?
Wore my wig almost whole day today. Getting more used to it. Board meeting and strategic planning tomorrow so I will be in it from 9-6:30. Maybe a sneak to restroom for break
Twin 2 flys in tomorrow night at midnight. Total surprise for twin 1. DH will go to second tx Friday with me though. I want them to beach it
Am blessed I have friends bringing dinner for Friday, Saturday and Sunday so we don't have to worry about cooking. Just enjoying each other
I have to advocate for something g more than aleve this time. Anyone have success?
Hugs to all my warriors
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Badhairday: I am on AC every two weeks and had my third yesterday, the first week of sides have been tolerable, fatigue, severe constipation, gassiness, heartburn, runny nose, dry eyes, all combatible with over the counter meds, the second week after treatment, side let up, still have heartburn and gas but not as bad, dry eyes and runny nose continues, by day 13-14, I almost feel normal, just in time for new treatment day, the steroids and anti nausea meds make my brain fuzzy the first week as well. I hope you have light sides! And keep the faith, this is doable!
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Rose. Clap clap!!!! 75%down!
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TobyCC- My eyes are "weird" sometimes constant tearing, other gals call it "Tax-o-tear", get it. Apparently it's pretty common, I also feel my vision is worse. Dry Cough developed after infusion #3 for me.
Enjoy those twins! Double the fun!
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I agree with Rose about A/C. First week is a bit rough with sides like she described. It is quite tolerable however. The second week is much easier. Love, Jean
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Tobycc, no I'm not. I'm enjoying feeling almost normal again! I don't want to go back to all that crap. I'm doing 6 rounds of TC. You?
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LA, I'm not either. Hoping for half shot and pain pills. I can deal with the rest. I want it done!!! I have 4 total then rads
Ate Oreos tonight which I NEVER do.....ugh
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