Anyone starting chemo August 2016?
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Interesting about the drink and also the Allegra for bone pain. I see my MO for a followup in the morning and will ask him about the Allegra. amy hips hurts so much after the neulasta. I really had no signs of nausea so feel very fortunate. Good thoughts that everything goes smoothly for you and all else starting this week.
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ajbclan - Sorry you find yourself joining us here...but you are among friends. Wishing you the very best with your colonoscopy. Praying it will be "all clear" so you can focus on dealing with the BC.
Unwilling - That shrub sounds good. I will have to try that with some peaches or maybe apricots. I assure you that the Emla cream works like a charm. I didn't even feel the nurse access my port. What I need to figure out is how to cut a smaller square of plastic wrap. Every time I tried to cut a small piece it would stick to the scissors and then turn over on itself and stick together. It was pretty much a comedy of errors. Sure glad no one was watching me other than the cats.
Busy day at work tomorrow - hoping it's not a low day for me. Going to head to bed now even though I'm not tired at all. Want to get as much rest as possible. Sweet dreams, all!
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Dara, my MO was quite insistent that the high-dose Allegra is far more effective than Claritin. I sure hope so, because I have a lot of bone pain as it is from arthritis and severe osteoporosis as a result of a parathyroid tumor I had three years ago, plus osteopenia which is bone softening. I developed scoliosis because of it, and I've shrunk over an inch in height. If bone pain is really bad even with the Allegra, I won't hesitate to ask for a pain med. I was concerned that he might not want me to have injectable steroids for my bursitis, but says "no worries". I hope the baking soda does the trick for you! What is the magic mouthwash everyone uses? Is there a recipe somewhere?
I will be experimenting with the water/honey/ACV AND some shrubs. I will let everyone know what works and what doesn't!
Fireheart - I am normally all fumble fingered with plastic wrap all the time, so I imagine I will also experience problems with it on my port! On top of that, I'll be putting it on while we're driving! I buy a huge 3,000 foot length of the stuff at Sam's, so I may arrive wrapped up like a mummy! If I put the Ema on before I leave home, that would be about 2 hours before a nurse accesses it, and I could be numb from my ear to my waist by that time! I'm very glad to hear that it works so well - thanks!
WenchLori, I felt for you having the meltdown! Mine have lessened from 6 per day to just one today, and I was driving home from the fabric store when it hit. At a stop light, I just put my head down on the steering wheel and cried hard for about 2 minutes. I was thinking about our 50th anniversary on Sept. 30, and the fact that it will be my 3rd chemo day. I must get them to let me have my treatment a day early or after the weekend. I know I won't have hair, but that seemed to be OK since I got the wigs; I could live with that. But to possibly be feeling a bad SE makes me so upset that I may just tell them I absolutely refuse to have a treatment that day, so figure out something else. It's just too, too cruel. We were going to take a wonderful trip to treat ourselves, to Costa Rica. We wanted to move there next year, but I guess that dream went poof.
For all - sending you my warmest wishes and a reminder that this too shall end. My tunnel is still all dark and scary, but there will be a light at the end of it one day, and yours will have one, too.
(((Hugs!)))
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I have used Emla cream on many occasions... It works really well, but no fear of it numbing areas outside the for you place it. Plastic wrap works well but you can cut a larger piece and fold it to be a more reasonable size to cover the area and then tape it in place. I did this before my SNB when they did mapping on my nipple... It worked perfectly.
Not using any of the steroids in my cycles has me nervous my SE will be harder since that's their primary function...But hopefully not! I won't be getting nulasta unless needed- they are hoping I won't need it.
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Greetings all, new ones and old. still love reading all of the threads, keeps a smile on my face. I am blessed, as so far, it's been ok for me. I am 6 days out from 1st infuse, and have had just minor issues. i got the port, which was a breeze, and just felt like a mosquito bite when they accessed it for the infuse. way easier pain wise, than a blood draw from vein...i always get the old "your veins are small or they roll, blah, blah." it's funny, but those that know how to draw blood well, and do it daily, have no problem at all drawing blood. chemo brain hit....i digress. anyway, like wench lori i've dropped 5 pounds. not a bad thing for me, cause i need to lose another 35 to reach my target weight. it's a shame BC is the reason it's happening....on a positive note, i eat well and frequently. i eat probably 4-6 times a day, a little at a time, and it's working to keep nausea at bay. during week of infuse, took nausea meds like clock work for 1st 4 days after infuse. could only eat boiled chicken bites and pasta, everything else made me nauseous to think about...except twinkies. those first few days, i found out the hard way that over eating caused nausea as well. i ate two twinkies back to back, and that was a huge no-no. won't make that mistake again. My infuse was last monday, and by saturday i was feeling back to the new normal. i made sure to walk every day for at least 20-40 minutes, even though i was a little tired. it's been very hot here, heat index around 104-116, so you can only walk near dark. back to food----as of saturday, i can tolerate smells and most food, even went to eat mexican food today. i could only eat one big nacho, but it tasted good so my taste buds are still operating. MOUTH/GUMS-very tender, and am controlling that by gently brushing 3-4 times a day, along with water mixed with baking soda and gargling 3-4 times a day. the biggest thing that has helped me, with the mouth part, is being able to sleep with my mouth closed and breathing thru my nose. it's weird, but in central texas, allergies are horrendous...and my nose stays clogged. since chemo, my nose stays dry, i sleep with mouth closed and breath thru nose, and it has kept mouth/gums from getting really sore and dry. I know this, because i slept in bed two nights ago, under the ceiling fan, laying flat.......and woke up with my mouth/gums killing me, and a stuffed up nose. Now, i sleep on couch, a little propped up and not under the ceiling fan. helped tremendously. i tried the biotene, but that has a minty flavor which makes me nauseous, so i just stay with baking soda and water mix before bed. as for water...i can't stand the taste since chemo, and have not been able to drink regular water. I switched to club soda, and have had no problems since then. thankfully the nuelasta pod was no problem, and i have had no adverse effects from it. HAIR---that bites. mine was never thick to begin with, and i colored it of course, and the chemo had it "breaking" off. I've already been thru menopause, so those of you that have no what that can be like...there were days i wanted to just cut my hair off..........so i had a menopause moment today, and i cut it all off. then had my sister shave my head. i don't look as good, but my hair is no longer bothering me.
:) And, oddly enough, i don't care anymore. I have a little peach fuzz, and it's doable. it was like my hair was dead already, and even when i washed it, it didn't feel clean. Anyway, it didn't bother me as much as i thought it would, to have it gone. I'm not going the wig route at this time, but may change my mind...who knows? outside of mouth/gum issues, i feel almost normal, albeit a little thinner. Chemo brain is true...i'm having a hard time with that...it takes time for brain thought to come out of mouth, and then it's not correct. I"m getting used to it, but don't like it much. I made up a word today while walking with my brother.......horracious. I meant to say horrendous, but that didn't come out. Just an example of chemo brain. Jeez.and don't rat me out to anyone......but i drank a margarita today. first alcohol i've had since diagnosis. AND IT ACTUALLY TASTED GOOD...I earned it after shaving head. right?
Anyway, my second infusion is in one week, as I am doing every other week of AC for 4 cycles. Then on to Taxol for 4 cycles. Then double mast., then 45 rads.
BTW...I am 49. and bald.
I can say that my anticipation of chemo was way worse than the reality of it. Not something i want to do annually or anything, but definitely doable.
No breakdowns, but completely understand those that do. I've been irritable alot, similar to when i was in menopause....everyone wants to do "for me". my sweet hubbie said he'd go to wal-mart to "lift the dog food bag for me"....REALLY??? i have cancer, i'm not missing my arms or anything....i know he was being sweet, but i yelled at him anyway, telling him to stop treating me like i was an invalid. I slammed out the door, and in true menopause fashion, sent him a text telling him how sweet that he offered. uh huh. i sometimes forget how hard this in on the family. I truly believe that this is harder on family than it is on me. Just my opinion.
Everyone keep writing, cause i love hearing your thoughts and pieces of life.
Hugs,
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Kenzielulu, thank you for your comment about the anticipation of chemo being worse than the experience of it! That helps.
A port question in case anyone has advice on this... I asked for an arm port instead of a chest port, and my MO was cool with it. Then the nurse found out they don't do those here anymore because the complication rates are higher. Now i'm thinking i'll start without a port and see how it goes. I will have four cycles of TC, Herceptin for a year. Maybe i can get through without a port? I'm always told i have good veins. I will research port threads here.
Best of luck to everyone
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Hi Tunegirl, I have a PICC line in perhaps that's an alternative
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hey girls... Setting my alarms for meds and have a question...
As you know I am not taking steroids for SE- so I want to make sure I schedule the other meds properly! I already have my Aloxi and Ranitidine scheduled for "am" (so I plan on taking them an hour before my 9am infusion)... And then the ranitidine again at night on day 1... But for the Emend I haven't been given a specific time! It just says once a day for three days (with a larger dose day 1). Anyone else taking Emend? Is it best for me to take this in the am before infusion as well? Or afterward?
I also have metonia to take as needed every 4-6 hours... Which I will probably take automatically for first 24 hours just to be safe.
Hoping one of you already through infusion 1 can help tell me when best to take my Emend!
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emend is given in your IV with benedryl and anti-nausea drugs. That what takes up 3/4 of the time before getting chemo. Usually you do not take anything yourself before you get ther
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jiff- no, mine is in pill form. I already picked up the prescription. That being said, if it's often administered via IV pre-infusion, I will add it to my list of meds I will take before I leave the house that am
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Wow, that's a lot to be responsible for! It's all I can do to get myself to the infusion with water in me! 🙄 I am going to ask for my second infusion to go lighter on steroids. Had a heck of a time getting "down" from them last time. I thought they were for allergic reaction, not s/e. I did not have any side effects so if that's it, I may put up with them
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Hi all... I didn't get on here much yesterday afternoon. Today I had an appt with MO to check how I'm doing, blood counts etc. All really good news. My white blood counts have completely rebounded after just a week thanks to the neulasta injection. I'm now 7 days out, and woke up today feeling like I was hit by a truck. No nausea or actual pain, just couldn't lift my arms or hold my head up. MO said that's completely normal and the worst should be behind me for this cycle. I talked to them about my mouth issues and got 2 prescriptions for that. One is the magic mouthwash, that they even call that in bc books.
It's prescription, Kenzielulu, and when I got home I tried it. OMG! Gagged immediately because it tasted solo bad, but immediately numbed my whole mouth. Yea! Seems I'm lucky enough to get both mouth reactions, thrush, and reaction of chemo with canker sores. It's much better today and I was actually able to eat 1/2 rotisserie chicken sandwich on super soft bread. I've dropped almost 6 pound, but really can't afford to lose very much more. The PA said I need to eat, even if I can't taste anything or feel like eating. I'm still drinking lots and don't have problems with that. And I wouldn't stress about the margarita... I've had 2 since diagnosis. My MO said once in a while won't hurt us.
I know what is meant by taking our hair into our own hands. This morning, I was almost wishing I was bald as I struggled to get dressed and ix my hair for dr appt. I just didn't have the energy for it.
Tunegrrl, I don't have a port or picc line. My MO suggested I try it just straight into the vein and see how I do. I just really hydrated before and had no problems at all. I didn't even get a bruise, and I bruise super easy.
Hope all are having a good start to the week. I know the anticipation for those started this week is high. I agree, it was no where near what I thought it would be. I also didn't need 1/4 of the stuff my DH and I brought. Next time... ice chips and that's about it. Hugs to all...
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Dara, I felt the same way on Day 7 and then everything changed. I was hungry and ate everything in site and got my energy and, unfortunately, weight back. I did not have as many problems as you have had with mouth, mine was just dry. Maybe because I am cold capping some of that kept my mouth cold, but I am definitely doing ice chips for my second one Thursday.
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Jiffrig, are the cold caps working for you? I'm definitely doing the ice chips next time for my mouth. Glad to hear things changed after day 7. I've felt hungry, but then I try to eat something and have absolutely no sense of taste. It's totally unfulfilling! How's others' hair doing? I decided against cold capping since my hair needs lots of blowdrying and product which I think is not recommended. I had bought a pretty good wig when dx, but then did see another thread that recommended Christie Brinkly wigs. I went on and found one that looks like my haircut and it can even take a blow dryer or flatiron. I find my scalp is getting a little tingly at the very top, but I wonder if I'm just imagining it??? I hear the avalanche hits around day 17. It's a little nerve wracking thinking how long it takes to grow back. Are others planning on rads after chemo? It just seems like such a process!
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I will be starting this month, after getting a score of 19 on oncotype dx. It looks like I will be doing taxotere. I tried to ask my oncologist if there was anything else I could take after reading about the risk of permanent hair loss but she is adamant about taxotere.
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Not sure, as yet, if I am losing hair or not. I'm only 12 days out from first infusion, I think you start losing at 14-15 days. You do have to baby your hair. My hair is short and curly so I can go without fussing with it.
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Welocme Mydogspot, but we're all sorry you have to be here. This thread is really helping me (and I think others) get through this process. It's so helpful to "talk" to others going through the same thing, or who can offer support or suggestions. Re taxotere, my MO said the risk of permanent hair loss is super low (I read 3%) but the reason he chose it was that it is the least likely (at this time) to have any long term heart side effects. My onco score was 20 and I had still decided to forego chemo until my MO did another test, Prosigna, which is specifically for detraining genomes of cancers in the intermediate onco range. It came back high risk, so here I am. Is your MO doing a Mammoprint or other test to help define exactly which treatment is best?
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Hi All,
I will be starting on August 30: AC for 2 mos (4 infusions), followed by Taxol weekly for 3 mos.
Chemo came as such a shock to me, that I literally turbo'ed through all of the stages of grief....almost bargaining with my Oncologist for 2 hours. Finally, now at acceptance, but terrified, like many of you before you got started. Trying to focus on the positive, and adjusting my lens to look at chemo as my... friend (gulp), a tough as nails friend.....it's going to kill the very thing that wants to kill me! At least that's what I'm telling my 12 yr old daughter.
Have any of you taken Valium or something along those lines prior to your infusions? I've read that it can help your body be more receptive to the meds since you wont be so uptight...? Has icing the finger/toenails helped?
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Life, the worst is the anticipation before you start. After the first infusion, I was like..." Is that it"? I had so few side effects I am now concerned it's not working! Icing your hands and feet is for taxanes, not A/C, but do suck on ice to minimize mouth problems. I have to take a Valium and Tylenol before because I use cold caps which are -34 degrees. So it's OK. Whatever it takes to get you there! 😉😉
Dara, I don't even know my oncotype! I'm just doing what they say, I was in too much shock to formulate questions. I will ask Thursday
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welcome "lifeisnotover"... I will be icing toes and fingers for sure.... It is supported (but not necessarily encouraged) at my centre. I will also be ice chipping my mouth during as well.
Ativan is sometimes used pre-infusion here as well.
Had my chemo class tonight... Totally boring since most of what they cover is what we all talk about here! Ha... Only useful part was the 5 mins where they walked us around so we know where we are going day 1. Aside from that this site offered much more info and resource!
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Welcome Lifeisnotover, we're all so very sorry you have to be here, but Hopefloats is right, this is the very best place to be right now. I too was just dumbstruck when I heard I needed chemo. My BS, and MO both thought I should be fine with lx and rads. Then my onco test came back intermediate... but still a low intermediate. A special test called Prosigna ranked me high risk, so chemo here I am. My MO ordered Ativan at my request just for the breast MRI. I'm moderately claustrophobic and had a bad experience once before. By the time I was ready for the infusion, I was actually fine, although it's pretty surreal to sit there knowing what they are putting into your body. I did laugh and told the chemo nurse I'd changed my mind!
Hope, this thread had given me so much knowledge and the women here are both intelligent and compassionate. We all believe in being as much in control of our medical experience as possible. I didn't have a class prior, but everyone walked me through what what about to happen. The chemo nurses are really incredible.
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Thanks, all, for the great points....The anticipation of it all can be so consuming, and nighttime is the worst. Friends remind me...one day at a time. I have a list of about 17 question for my chemo teach class, but am really grateful for the tips that I've found in these threads.
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Well, I started this thread and it looks like I wont likely be joining you this month. My surgical infection is still clearing up, and I may not start for several weeks. I hope you all enjoy this thread and I will continue to follow along, since it seems I have no bites on my Sept topic lol. Good Luck and God Bless all of us.
xoxoMichelle
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Michelle- sorry to hear you are delayed, but glad the infection is clearing! Hope you stick around here!!!
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I think I am getting a yeast infection now, looks like I'm calling the Dr tomorrow. I read chemo can cause these. Will report back on this. No rest for the weary....
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Hi ladies,
Received 1 of 12 Taxol weekly infusions startingon 8/8/16, along with Herceptin which is every 3 weeks for 1 year. Has anyone started recently who has IDC, triple positive,and can share their experiences and advice?
At what point does the hair fallout? Any pain in feet (neuropathy?) after minimal walking? Sensitivity to the sun?
What are your side effects and what days are your good/bad days? What are you able to eat?
Thank you for sharing your experiences.
Karen
Dx 5/26/16, IDC, 9mm, Stage IB, 0/8 nodes, ER+/PR+, HER2+ 6/21/16 Left breast lumpectomy 8/8/16 Taxol, Herceptin
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After all my preparations and agreeing to the proposed treatment plan, I have opted out of chemo and radiation. I have asked for, and will receive the lumpectomy and removal of a very few lymph nodes only. I am old, and tired, and my husband has early dementia. He can't take care of me. I don't want the cure that I was promised I would get. I don't want the future that is in store for me (old age and poverty), and if I die, my husband can be taken care of properly with the life insurance I will leave him. I am profoundly relieved at not having to be worried about the risks of permanent baldness, peripheral neuropathy, lymphedema, or more surgery. I will not have to further suffer the indignities of having to buy adult diapers for the uncontrollable diarrhea I could have on our long commute home after chemo, or the nausea and vomiting and the mouth and throat sores. My husband can't help me with any of that. I need to take care of him, or leave him with the means to be taken care of. I have taken control of my destiny and I am now content. I wish for you the full realization of all your hopes and dreams. I hope that your side effects are neither severe or permanent, and I will think of you all very often. I may even come back to visit to see how you're all doing. If not, you have my sincerest hopes for a full recovery. Be well, be happy. I am happier than at any time since diagnosis, and so, so relieved.
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Unwilling, I'm just so sorry to hear of this very difficult decision you have had to make, but completely respect your decision and right to choose what you do or don't do. It sounds like you have so much on your plate with your husband. I'm glad you are moving forward with the lumpectomy as that may also give you additional information. Please take it just one step at a time. I know we are all thinking positive thoughts for you and wishing you well in this process. We all have to feel we are making the right decision regarding our health, lives, and loved ones, and hope you find peace in whatever decisions you make. I'll be thinking of you and sending you prayers as you move forward. love, Dara
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Unwilling, I second darab! Glad u r at peace with ur decision. Sending prayers to you and family
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unwilling, so happy for you to have found a comfortable course of action for yourself. I think you made a wise choice since you do not have a strong support system. Putting it in Gods hands now give you peace of mind and strength. Best of luck with your husband
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