Starting Chemo April 2016
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Numb and Cody!
YAY!!!! I am so happy to hear from you and that you both did great with your first rounds. Thank you for your reports. I agree and I've heard from others that the anxiety and fear from the extremely negative programming we all have about chemo is the hardest part and I'll be glad to get started - I guess. I had a rougher night sleeping - bad dreams about my head freezing and chemicals getting put into my body that I have no knowledge of or choice of...so it was very sweet to hear you had your head get icy Cody! (Cody - how uncomfortable are the caps? Did you get used to it?)
Surrender Surrender Surrender!
LOVE the story of the 44 years post Chemo! Let's walk that walk together - we can be posting on our April 2016 forum when we are old old ladies.
CJ Its a hard road with friends and peoples reactions - its very hard to navigate. You are not alone in not liking being called "survivor" or "strong" or any of those labels that make people feel better to say but aren't helpful. I'm hoping to just be honest with people and say "you know what, that is not helpful to me and maybe you should tell that sad story to your counselor..." I'm going to a family gathering on my husband's side (memorial for his grandma who died at 104) on Sunday and I'm not taking any kind of morose stories or overemotionally.
Well its Friday and I really wish I didn't work today! I'm very glad that I scheduled a long weekend off for my first round because I will be like you all and do fine and then have a break.
Annie
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Jeri Ann - Good luck to you! And yes..let's keep tabs on each other. Monday will be a long day for both us! I'm curious to know how your cold cap works out. I'm going without and if it goes, it goes...I cut it short last night and put a pink streak in it! I think I need to change my photo on here now! Try to relax over the weekend, rest up and let's power through this together!
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Hi ladies!
Just wanted to pop in from the April 2015 chemo group to wish you well. Less than 3 weeks post chemo, I ran 14 miles, and 7 months later I had my fastest half marathon time ever. Its a horrid time, but you will get through it. Love and light to you all!
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I am now finished the chemo eleven hours and while I wasn't feeling too bad I did feel slightly nauseous about 5 hours afterwards and wasn't able to eat my dinner as I was afraid it might get worse. Definitely have to get the soup Christine. I didn't feel like throwing up but I had a sort of tension in my head so I took a pain killer. I had my husband go down to the pharmacy and he paid 152 dollars (134 euro) for the prescription as I got a lot of things put on it just in case. I didn't want to wake up in the middle of the night and have no supplies and then everywhere is closed. So I feel better to have the stuff to hand.
I decided to take a Valoid (strong anti nausea) tonight. It is 22.54 here now time wise so I would like to get a good sleep and the slightly nauseous feeling was annoying me. Don't know if the Valoid is working yet. I also got sleeping tablets on the prescription but as I never took one of those before I am a bit reluctant to take one, unless I am awake for hours and am desperate. It also said on these sleeping tablets if you are taking anything else that makes you drowsy don't take these, so the pain killers Tradol have a note on them that they may make me drowsy so I am thinking that I better not take the sleeping tablets. The Valoid also has the same note, so better not take the sleeping tablets or I might never wake up.
Sitting here now in bed typing this and I feel fine. Hoping tomorrow brings a good day.
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Thanks for the check in Numb! I think you're smart not to take too much. I slept okay but I was wide awake until I wasn't if that makes any sense. I didn't feel nauseous so much as odd indigestion the first day. I think I get what you mean. I didn't take a sleeping pill because I took a stool softner - and I didn't want to sleep through any of nature's calls.
Hope you get some sleep and feel wonderful in the morning
I will say that one side effect I've been enjoying is that my skin is amazing! I don't even need foundation!
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Numb I'm so happy for you after your first Chemo hope it stay that way forever... how often you gonna get Chemo?
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Hi Everyone! I wanted to stop in and report back how chemo day 1 went for me. Unlike most of you, I am starting with TCHP for 6 rounds and then will do AC for 4 rounds. I am happy to report that everything went well. No reactions and no sickness so far. I did have a tiny bit of nausea overnight but nothing a little Zofran didn't take care of. I am doing hydration at home with normal saline so that is helping as well. This is something I requested because I am an infusion nurse and knew this was something that could really help abait potential symptoms. I will check back and let you know how I am feeling as the days progress. Good luck to everyone starting next week
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Hi ladies, I have finally been given the go-ahead and can join this group.
My start date has now been finalised - Monday 11th. I will be getting MMM - Mitomycin / Methotrexate / Mitoxantrone. I know New Zealand is behind the times, but I've just read online that MMM was developed in 1986! Here's hoping it works.
As you can see from my profile, I am Stage 4, mostly bone, but it has just appeared in my liver. I have been on various hormone pills, but none has stopped the progression, so here I am.
I have had numerous bizarre happenings in this trip to CancerLand / Club Met; and if I ever write a book about it, it will be called "SNAFU - Situation Normal, All F@#*ed Up" No doubt I will keep you all entertained / horrified as I turn blue from the drugs. No kidding - I have been warned my eyes, urine, and nails will go blue, maybe even my skin.Thankfully my favourite colour is blue so I will match my clothes!
I'm going shopping this afternoon, to stock up on all the recommended supplies, then roll on Monday at 9am.
I look forward to comparing notes and side effects - all the best to all.
Sue, from New Zealand.
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Annie, the caps were not so bad, after a few minutes I couldn't really feel the cold, they just feel heavy and weird, but nothing terrible.
Numb I'm glad you are doing ok, I also have my medicine arsenal with me just in case. My doctor recomended I try melatonin for the insmonia as I don't like sleeping pills.
I got my neulasta shot today, lets see how that goes...
Have a great weekend everyone and good luck to all of you starting monday!
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Oh my goodness suems! Blue?! How biZarre.
CJ, I am jealous. 1 week in and my skin is terrible. My back, neck face are covered in bumps and pimples. So dreading being a bald pimply mess 😭
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Lacrosse - nice to hear. I'm interested to here how the in home saline drips go. I do foster kittens and usually have saline and needles on hand, so I know it works it kittens.
Good luck to you!Welcome to our group Sue! I've always wanted to visit New Zealand. I'm a hiker and outdoors woman. Stage 4 is scary. I know many people on this forum who have survived, though, and of course, I'm cheering you on!! I'm happy to ask my oncologist what she would recommend in your situation. Might give you team some new ideas. Although I know AC/T is fairly old, too. Please keep us informed! Your drugs have some interesting side effects. Sounds like you may be smurfed. You have an amazing attitude. I look forward to hearing your tale,
Uniboob - sorry you are breaking out. My skin has been amazing. Well, we all know how soon all of this can change.
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Reporting back from chemo day 1😀 I had a fairly good day. Had breakfast, went to hospital. I was supposed to begin at 10, but I was on my seat before 10 so we began anyways. People at the clinic gave me a lot of instructions on what to do and what to eat during this process. They told me to don't drink any alcohol but I think they are being over protective. ( They told me to get rid of my cat too but I convinced them not to😻). They gave a 3 tablet set of Emend which is a very powerful anti nausea pill. We were out by 1 pm. We had a nice family dinner afterwards and we went home and I slept a little since I was feeling a bit tipsy. Then my hubby prepared dinner and watched a few movies and went to bed. I was thinking that how lucky to feel so few SE, but about 1 am I was woken by this strange aches of my stomach. It wasn't nausea but it was like stretching my stomach with sudden sharp pains. I immediately took one Kytril and they disappeared over time. I had a fairly good sleep than. I think I'm gonna keep these pills near my side all the time.☺️
Numb, how did you sleep last night? Any other side effects? I hope you feel good in no time because these pills work.
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Hi everyone, great to see Agharta reporting back first day. I did feel slight nausea yesterday evening and I had a tenseness in my head, but I don't get headaches so that is as far as it went. I was afraid to eat much of my dinner as the nausea was making me feel slightly dizzy, nothing I couldn't cope with though. I am taking Dextramethsone, Emend, Motilium and mouth washes every day for 3 days and then as often as required but the Emend only lasts for 2 days, 80 mg. I had the 125mg one in the hospital and was told to bring my one in for the next chemo (they are very expensive so smart move for the hospital to get me to supply it) I find the mouth washes very refreshing and help with the slight nausea as you feel very fresh after them.
I had a good night's sleep without the sleeping tablets. I did wake up every 2 hours but went back to sleep again, that's not unusual for me.
I felt quite nauseous when I got up this morning, as I guess all the meds had run their course at that stage. I had scrambled egg and toast for breakfast and enjoyed this. Took the meds and now I am feeling much better. So any symptoms I had were manageable, delighted with that. I was up 2 lbs this morning so need to cut down on the eating a bit. I shared a bag of Iced Caramels with my hubby on the way home yesterday so I need to cut out these treats. My urine has not turned red so far. In fact I haven't been going much. I thought with all the water I am drinking I would be going far more. Yesterday I went to bed for a rest in the afternoon as I had been up very early for the appt. but when I got up I could kind of feel my legs a bit heavy like I wouldn't be able to walk far. I think someone else on one of the forums said this too, but later on I was fine. I intend going for a walk today and try to keep up with my normal routine as I don't want to start acting like an invalid or I would get depressed in no time.
Welcome Suems, best of luck with your treatment and hoping you get some comfort out of us here. It is a great place to vent.
Great to see you back LacrossMom and that your treatment is kind to you.
Christine, you are one week over your treatment and you have done very well, great stuff. I am going out to get the soup today, it will be a great standby if I can't eat a dinner, but I think I will be better today.
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Valstim - Thank you for stopping by! Sorry you are taking this journey a second time. I always love hearing from those who are on the journey with us, just a bit further ahead. Hope is an amazing thing, I hope my hair grows back on Taxol.
We'll see. I agree with the hydrate, hydrate, hydrate,.Annie - The March 2016 group is talking about creating a "Secret" Facebook group. If people would like, I can set that up for us as well. We'll be able to keep in touch, share photos, etc, and have it be much more private. Thanks for the validation. Most people are amazing and truly mean well. I was just a bit less tolerant yesterday than I typically am. My 23 year old daughter get so upset when people say things like that. Enjoy your weekend!
PdrChick and Jeri Ann - Good luck this weekend (I think the time leading up to chemo is harder than the chemo itself. So many nerves!) And of course, best wishes for Monday.
Littleblue - that's amazing!! I'm actually hoping to walk a half in October. Thanks for the light and hope!
Agharta - Glad to hear you are feeling well! I was actually instructed to take two of the pills daily whether needed or not for 4 days. Keep us informed.
Nice of your hubby to make dinner. My MO was very casual about my cats. She said I'll be with good immunity more than not, so not to worry about them. I would NOT get rid of them (I have 2 of my own and 3 fosters), so I was happy to hear this. My Gus is a great source of comfort as he's quite the lap cat. Numb - I only peed red while undergoing treatment. After that I was normal. I think as long as you are feeling fine, do whatever makes you happy and definitely walk. You'll know if you can't. I still wake up often, but for me it's hot flashes. I'll wake up after a couple of hours and need to kick off all the blankets. Then when I finally cool (about 10-15 minutes), I pull the covers back up and snooze until the next one. I get the sleep I need. I hope you enjoy the soup! I hope you don't need it!
Had about 10 friends over last night and it was just a wonderful time. It was a mix of people from my life, but everyone had a good time and it was SOOO good seeing people I haven't seen for a while. I'm fortunate in my friends. I have so many flowers now that I don't even know where to put them all. This is a very happy problem.
I had too much pizza. Was good on the wine, though - only had a little. Today is the day to get back on the healthy eating track. My stomach is not thrilled with me. - and that's not chemo related - it's "I ate way too much pizza and ice cream pie" related (Oh yeah, a friend brought an amazing ice cream pie. It was way too good. Cheat day done. Happy to move forward. Happy Weekend Chemosabes! Hope everyone who just went through chemo feels amazing, and everyone who has chemo coming up gets some rest knowing that while it does suck, it's not as bad as we build it up to be in our minds.
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I'm a bit wordy today, so my apologies. I did want to add one more thing. A friend in Pennsylvania (where I used to live) is doing a benefit for cancer research. Not breast cancer specifically, but all cancers. He mentioned his friends who have beaten cancer, then mentioned me and a few others who are "In the arena now. You are warriors, all." I like this metaphor, and I think of my favorite quote:
It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat. ~ Theodore Roosevelt
We are striving valiantly, and we WILL beat this shit (excuse the language). We will have days when it feels like we are failing. But those will be days, not weeks, or months. We will know the sweet taste of victory, grow our hair back and live long and happy lives.
(Okay, maybe I've had too much coffee...
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I discovered I wasn't taking enough of my Dexamethasone Medication as it came in 2mg tablets and my instructions from the chemo nurse was to take an 8mg tablet. I didn't cop on that I should have been taking 4 of the 2mg tablets and not one. So when I sorted that out today I feel much better than yesterday, almost normal. I am still wary of what tomorrow might bring, being the 3rd day and what the rest of the week will bring. You are on the same chemo as me though Christine and you didn't have the 3rd day blues.
You seem to have had a great night Christine, it was nice to have so many friends around you. I have not touched the wine since I was diagnosed. Actually, I bought a bottle of non alcohol wine but then discovered there was a trace of alcohol in it and that put me off it. I get tired of just drinking water and soft drinks. I would like something with a bite to it, that is not loaded with sugar.
Njr426, jgab, Pdrchick, and Suems, best of luck for Monday and don't spoil your weekend thinking about it because the actual getting of the chemo is nothing as some of you know already, then you just deal with each little side effect as it crops up. There is always a remedy for each little side effect, so it is manageable.
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pdrchick,
Your hair is adorable. I am so anxious for Monday. I know I will feel better with one under my belt. But I find myself looking around my house for things to do. That was never a problem in the past!
Numb...I wish I could say I wasn't dwelling. But I am:( I visited the infusion center on Friday....they just said they will get me in and get me out.
Is everyone working through chemo?
Jeri Ann
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Happy and healthy weekend everyone! So happy to read all the reports and the great positive spirits.
Numb - I like the La Croix - sparkling water with tangy flavors and no sugar.
CJ - Your night sounds fabulous! I'm so happy that you are suffering from too much pizza and too many flowers. I had too much pizza last night too.
<I want a lazy day but we are off for an overnight. Looking forward to seeing my BFF.>
Annie
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reporting in on chemo treatment 1: Both Monday and Tuesday went as planned (they broke up my First round of TCh) and has the neulasta shot Tuesday. Side effects kicked in Wednesday evening. Tastebuds were outta whack and I was super tired. Nausea and loose stools followed. Not fun but have been manageable with meds.
Weird side effect #1: my skin is breaking out. Not a rash, just pimples all over my face like I'm fifteen 😞
Weird side effect #2: my never ending period. I was nearing the end of my regular cycle when I started treatment. Now the darn thing won't stop. Ugh.
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It's so good to hear that those who have started are doing so well. Wishing good days ahead for you.
It's becoming quite the international group here!
Spending my weekend getting all the drudge chores done - food shopping, cleaning and laundry so that will all be done and out of the way.
CJ - so good to hear that pizza may still be on the menu! I was just saying to my husband that I will be seriously bummed if pizza doesn't taste good any more!
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Ok Friday felt great, (chemo was Thursday) today have had head and neck ache pretty much most of the day. Not sure if this is first day off steriods or neulasta shot yesterday SE. Nothing horrid. Tylenol doesn't do much, Did go do 2 miles on treadmill, just washing clothes and watching crappy movies. Kinda nice quiet day. It snowed here in Ohio so have the fireplace on.
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Hi everyone!
I just finished 4 rounds of A/C on March 28, 2016. I started on Feb. 15, 2016 and had 3 more rounds every two weeks.
Monday, April 11th I begin 12 weeks of Taxol.
They have told me that it is easier than A/C. Dear Lord, I hope so. I know the first round of Taxol lasts longer due to testing for allergic reactions.
My surgery to remove both breasts (hopefully) will happen around July 20, 2016. Then I'll have to wait about 4 weeks to start radiation to my left breast and chest wall.
Then wait another 4 weeks or so before reconstruction probably going to have to do the DIEP flap because of the radiation. I am just hoping I can get all this done this year.
I don't need to start on another insurance deductible.
I'm having an MRI June 27th to see how much my tumor has shrunk. I visit with the plastic surgeon next week also.
A funny thing happened to me on Friday, April 8th. My left breast with the tumor started leaking bloody fluid. I called the oncologist's nurse and the breast surgeon's nurse.
They said probably hormonal changes and breakdown of tumor might be causing it. Since I'm having an MRI soon there's nothing to be done for it.
Has anyone had this happen to them on chemo? I have IDC, not lobular.
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Welcome Junebug, best of luck with your MRI. I have no experience of the leaking boob but it does sound like the tumour is breaking up and that would be a good sign.
Hope you find the Taxol better than the AC.
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Glad to hear you are doing well 7of9. I would say your aches are from the Neulasta shot from what I have read about them, but take it easy and rest.
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Hi BilliardMam, sorry to hear you had some discomfort but glad the medications gave you relief. Hope things settle down today.
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Jgab - do not fear Monday, it will be fine, there is nothing to actually getting the chemo, it is only in the next few days that you might have side effects and even at that you just deal with them as they come along, There is a remedy for any se so you will be able to deal with it.
Annie - , I will look for the La Croix, but probably won't be able to get it in Ireland but should be able to get something similar, thanks for the tip.
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Well this is Day 3 for me and I can honestly say that so far I have not had any se that wasn't manageable. I was a bit flushed when I got up this morning but I guess that is my body fighting the chemo. Had my breakfast with an appetite and could taste everything, took my medications and feel good.
Last night I felt very tired at about 6.30 p.m. and went to bed and slept for 2 hours. Stayed in bed then for the night and slept on and off, about two hours at a time but that's normal for me. I was just happy I could sleep at all.
Just wondering when I go off the Dexamethasone (steroid) will I then crash ? I go off it from Tuesday.
Oh, was down the 2 lbs I gained today so I was pleased with that. I think it was fluid retention as I hadn't been going much but last night I must have got up 4 times and got rid of a lot of fluid.
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Hey Jgab - re: your question about working during chemo, my job has been very supportive and accommodating through this so far. My plan is to take a month off to see how I manage through the first cycle, give my self a week after dose #2, then reassess with the intent of working some sort of reduced schedule for the duration. I'm fortunate to have pretty good disability coverage and an understanding manager. Good luck tomorrow, will be thing of you from West Chester PA!
Curious to hear what others are doing too!
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Jgab - I'm working through Chemo. I have the ability to work from home, so that makes it easier, but I have a friend who is a social worker at a hospital and ER unit and she worked through. Took it easier on days she felt punky, and rested, but managed. I have been taking off the day I get chemo - not because I don't work - I do, at least some - but to make up for time lost with all the doc appointments.
Annie - it was fun. I still have a fridge full of pizza. I ate perfectly yesterday, so I may have some today.
Hope you enjoyed your overnight!Billboard - Oh goodness, that does not sound fun. Diarrhea and a non-ending period - grrr. Hugs! My skin actually cleared, but we're messing with hormones, so all sorts of things can happen - and yeah, it can be like we're 15.
NJR - For me, the tastebud thing comes and goes. I have about 2-3 days where everything tastes weird, then a fog lifts and life is back to mostly normal.
7of9 - Yeah, I had a headache for pretty much a week. No neck pain - I wonder if that is related to your port? I'd check with your doc. But the headache - nothing would touch. Tylenol does nothing for me anyway. But even when I broke down and used the drugs I got after surgery for pain I could not really get relief. Fortunately it was only one night that was pretty bad, the rest was just annoying.
Junebug - I'm hoping Taxol is easier, too! Someone even started growing back their hair on Taxol! My fingers are crossed for that. I haven't heard of the leaky breast issue, but if your doctor is not concerned, then I wouldn't be. It's still scary! I hope you check back and let us know how Taxol goes for you.
Numb - glad to hear you are doing well! Not all side effects happen, so hopefully you won't deal with any!
Not much new to report for me. I'm still feeling good. I think the major side effects now are that I have to be a bit more careful with what I eat and I get a bit more tired after more strenuous exercise. If that's it, except for a a day or two of feeling weak mid week, I'll take it.
Happy Sunday everyone!! Hope everyone has an amazing day!
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Jgab - I'm also working through chemo... at least as much as I can. I will take half or full days off during the treatment days or if I don't feel as well, but so far, I've been able to work a normal schedule even with slight SE like the headaches. Towards the end of the day, I do feel more tired than usual and just have to rest a bit after work or in the evening. Getting extra sleep each night has helped me continue work and with a somewhat clear mind.
Over the last few days I have been feeling great. My experience has been similar to what CJSharma mentioned... it's about watching what I eat... nothing too spicy or greasy and small, frequent meals and more fiber have been the key for me. I did have pizza too (without the meat) and it didn't seem to bother me at all. Plus, more water and ginger tea or ginger with hot water. At my 1 week follow-up Friday, my Dr. did mention that my WBC were lower than expected even with the Neulasta injection, but I don't feel any different and she expected them to be going up over the next day or two.
Good luck to all the ladies starting Monday.
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