Chemo starting November 2018
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Jiffs - Thank you for the update and glad you were feeling good enough to bounce around and work, I hope for the same result! I guess those steroids do stuff to you.
MDoc - welcome and we have the same schedule, 6 treatments, every 3 weeks. Are you on TCHP too? I totally relate to poke me here poke me there. This port I got Monday feels 100% better than it did yesterday, thank goodness!
urdrago71 - Thank you for coming by to help guide us newbies. I can't tell you the sigh of relief I have when you said you could work. I worry and worry about that. My first treatment is in about 3 hours. When I met my chemo doctor at the infusion center, I had a cold, and coughed, and now realize the worry I caused everyone in the room. I know better now. Everyone, keep your chin up and keep helping us know what to expect. Hugs, Lisa
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PSA: that steroid energy isn't real... Be careful getting out of bed in the morning. I was so dizzy and almost fell over when I got out of bed like I normally would.
And thanks for the info about getting the drugs too fast and headaches, I'll mention it next time.
Good luck today, cat lady!
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I'm feeling some kind of way towards my oncology team right now and it's really affecting my ability to behave myself. My breast MRI - which was both painful and undignified- came back with three additional areas that need to be biopsied and they said they're going to postpone chemo until the biopsies can be completed. Apparently my only location option for getting the MRI biopsy done is the one office that is so far away from me it might as well be in another state. But they won't do the axillary sonogram and biopsy at the same time so I have to schedule that for another location on a different day. I'm trying to squeeze all of this in while also booked solid for my port, echo, dental cleaning, primary care visit, work obligations and also needing to inconvenience my husband who has to take time off of work as well to attend some of these things. I don't even want the damn biopsies. The only thing it'll tell me is more bad news.
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Hazel-Nut I so understand your frustration and it does seem they could try to make the appointments more convenient. I understand your frustration with all these appointments, the week before I started chemo was so busy and stressful and I was so greatful to my husband for being with me despite all the inconvenience. You just want to say enough with all the tests, even though they are trying to get the most information before treatment starts. Hang in there
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Jiffs - thank you. I know this is a false feeling of, everything is great! I read a little book they gave me today that talked about getting out of bed slowly - great advice and purrfect timing!
Hazel-Nut - I'm just so sorry. I called my oncologist, before I saw him, and asked him if he would order my echo, so I could get my echo and port on the same day. I don't know if you can coordinate anything like that, maybe not. Thinking about you and I'm sorry. Just know, it doesn't last forever, I had my port in, and knew the only place I went for the next 3 months is oncology. Hang in there!!! We will get through this, and you are in my prayers - everyone is in my prayers. The nurse prayed for me and my husband today and it was the nicest thing. Love and hugs, Lisa
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Well just poop. I also had to have another biopsy done and it came back positive so that sucks. I meet with my oncologist tomorrow and then start chemo Friday, unless that change things and I have no idea if it will. But just poop. I have had all those wonderful appointments (except for the dental, luckily that had recently been done) but add in a follow up cardio-thing (which luckily showed I DON"T have a problem) and a cardiologist. That and a nephrologist and their testing. Don't know about that one. Plus I had a mole, a cervical and a colon polyp removed. I have been fully and sufficiently sampled. Seriously. I feel like a box of chocolates. Little bits of me in a sampler box. I am anxious meeting the dr tomorrow and if all goes well - Friday morning at 8:30 I begin the next phase.
In response to all of this, I have been getting knitting, quilting and drawing projects sorted out. Have to get my head in a good place. And when the weather agrees, I need to weed out the garden. Wish it wasn't so wet. Hurumph.
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How is everyone doing who started this week??
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I'm working today had my Neulasta shot yesterday. I had a bout of diarrhea the day I had my infusion - about 1 am or so, but took the Imodium and was able to go back to bed a little while later. My face was all red yesterday, and when I went for Neulasta, they told me it was the steroids. I'm keeping a journal of sorts, so next treatment I have a "road map". Thankful I am able to work (and hope it is all day today, sometimes feel dizzy). Drink lots of water and move, everyone, that is what folks tell me. How is everyone else doing, how are you doing Jiffs? Best wishes to all of you girls. One down!
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Good morning to all hopefully. Had my first infusion yesterday, A/C with about 3 other anti nausea/ anti emetic things and the steriod bag. Neulasta OnPro on the back of my R arm, I felt the similar snap of a rubber band when it was initialized that others described.
Oh and I have a latex sensitivity (hives and excema around contact region) - the OnPro has a latex piece (small, about 1/8 inch) that will be in contact w your skin (saw this in some fine print on the website on the who should not get this....). I talked w MO and then onco nurse giving me tx. MO said I doubt they would put latex in a medical device... let's ask the nurses, I have only ever seen their little video on the Amgen site. Onco nurse said hmm, let me ask, I have never been asked that q before. Another one in the office said that she had only had one patient w a latex allergy that had asked about the OnPro and the latex component - watched the region, had the steroid regimen and had the Claritin on schedule and never had a problem with the device.
In short, I think bc the steroids and antihistamines you're usually Rx'd thru the tx, the risk of an adverse rxn is small. Anyone w latex allergy though should bring this up to their MO, dermatologist, onco nurses (bless them by the way) and primary care docs before getting this "installed".
I had a bout of crying in the car on the way to work yesterday morning. Ed Sheeran's Castle On The Hill, spoke more emotional volumes to me yesterday than it usually does. Had quite a bit of trepidation leaving work to pick up hubs and mom for the first chemo journey too. Called my dad just to hear his voice (blue teefers thru the car), it didn't matter what he said, just hearing his voice was a little soothing. Anxiety still high, I drove to appt (seatbelt on passenger side rides right over the port), asked the nurses if I could take a Valium befoe the tx started. Met w MO after getting blood work done, the started tx.
It was less of a deal than I thought it would be, maybe half a Valium next time. I had it built up in my head and it was maybe 2 hrs lots of bag changes and syringes later, OnPro onboard, I dozed off multiple times and was a little dizzy at the finish, but done.
Left over chicken and rice w onions, mushrooms and zucchini for dinner. 2 bottles of water, 1 cup of chamomile tea and this girl went to bed. Woke up 3x from night sweats and needing to pee. They weren't kidding about hurling you into menopause..... Have to call MO scheduler and see what time of day I have these appointments and make sure I'm scheduled for the right office.
Autocorrect and auto fill are getting a work out.
Hope everyone has a good day today.
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Oh one last thought, for those of you going thru the hair loss phase, pg 19 (on my phone view) of the Chemo starting Sept 2018 forum, those ladies (so far, haven't seen any gents) are hilarious.
Check out the photos of the chinchilla (s) on pg 19 and a good discussion about body talk and positivity on pg 20.
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I LOVE that photo of the chinchilla!!!! MaddieBrie - they make a little thingie that goes on your seatbelt, a cushion type of thing, the hospital gave me one anyway. Those nurses - God bless and love them. Hugs, thanks for that chinchilla smile. You're not the only one that cries either, hugs, with love.
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Hello ladies, new member here! I will be doing chemo after Thanksgiving. I will be doing TC X 4 maybe 6 depending on how my body tolerate the poison, lol. There isno definite date yet, still waiting for my MO to process all paperwork with insurance and I am still taking care of my dental issues.
MissouriCatLady and EdithMary, thank you for starting his group. I hope both of you are doing great and so with other courageous ladies that have started chemo treatment,
I have been doing a lot of reading about chemo but feels like my brain is still in denial that I am not absorbing all this influx of information.
Any advice on the best and easiest way to ice your hand and feet? My MO gave me steroids pills to take before, during, and after infusion; I believe some have their steroids given to them via IV, anybody know what is the difference, which one is better or less SE?
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I'll be starting chemo on November 14th. Six rounds of Gemzar and carboplatin.
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Hello Anxiouslady and chantalbe, welcome to our new group. Anxiouslady, I've read things on here about the questions you're asking, icing your hands and feet, I wish I could tell you what to do. You might look around on the other boards, I know the triple positive board has a lot of good people who know a lot of things, maybe start there? I have had steroids IV this week and my face turned red, but that is about all (it was just two days ago though). There are a lot of good places and articles to read on here. I'm a newbie myself, but am here for you in any way I can help. You are not alone here. Many hugs to you girls.
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Would love to join group! I had my first TC infusion on October 29. Round 2 starts November 19.
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Hi friends, popping over from August chemo board. Stay strong. And hydrate!
Anxious lady—I’m am icer now that I’m on Taxol. On Amazon their are these booties with 3 gel ice packs in them, Natra Cure I think. They work great. Then I pile more gel ice packs on them towards the end of chemo. For hands, I use these pads from Amazon called The Coldest Water. They are cold. I wrap them around my hands and seem to do the trick. Ice 15 min before the chemo to 15 min after. I bring a cooler with me to chemo. Looks like I’m going tailgating but instead of 30 beers it’s just ice packs. Such a bummer it’s not alcohol.
Jess
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Hello Ladies, hope everyone is doing well. I’ll be having my port placed on Monday, chemo education on Tuesday and see my oncologist on Friday. Unsure of when I’ll start. The following week is Thanksgiving, which I really don’t mind doing then since I’m not a fan of the season. Last year I had just herniated a disk in my back three weeks before so was mostly immobile.
Those of you who are working, how do you do it?! I had myself taken out of work beginning on Tuesday due to the anxiety, stress and fatigue being too much for me to cope with and total lack of focus. I’m getting by with Xanax, but didn’t want to drive or work with it in my system. My mindset may change as time goeson, but I’m taking the next 3-4 months while in chemo for me.
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MoonGirlJess, I've seen Natra Cure in Amazon. How long each set of gel packs stay cold? I read that some people just cover their hand and feet with socks and use ziploc filled with ice. What is the best way to hydrate? Can you drink diluted Gatorade or better to just drink plain water.
RunningCats, my anxiety is uncontrollable too, I haven't slept well since my diagnosis. I am alternating Xanax, Ativan, and Benadryl to help me go to sleep. I am imaging myself freaking out on the first day and first night of chemo and I am still in the process of re-programming my mind to accept this poison as my cure. Hopefully there will be very little SE for all of us.
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Anxious lady and running cats I have a long history with sleep problems and I finally went to a sleep specialist. He put me on trazadone and after a little adjustment it works really well. I may need to adjust a dose because obviously I’m have problems again but still not as bad. I suggest you see if you can find someone to help with that specifically. It kept me from piling on layers of things none of which were really working. Good luck. Oh and it was a consult free of biopsy’s scans or invasive procedures. Just someone trying To help you sleep
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Welcome new members! Sorry you have to be here but we're a pretty nice bunch
They gave me a 10mg Valium prior to my MRI breast biopsy the other day and it didn't do a dang thing for me. Years ago the dr gave me a script for xanax to use when flying and I never actually used it, its been sitting in my purse since then but I'd never opened the bottle, earlier this week I couldn't take the sleeplessness anymore and took a half of one before bed and it helped a little. I turned into a sobbing, blubbering mess before it helped me relax enough to sleep but I did sleep a few hours.
I'm a few hours away from completing my marathon week of appointments and man, I feel like poo today. So far this week I've been to the GYN, a breast MRI, an echo, a MRI breast biopsy on both breasts and then my port placement yesterday and my chest looks like I'm being abused. I got all cocky yesterday thinking that I wasn't doing too bad cuz they loaded me up on zofran and the lidocaine hadn't worn off yet and that conscious sedation never actually put me out so I left the hospital, took a quick 1 hour nap at home and then headed off to work for the rest of the day. Sedation never makes me really sleepy or groggy but it makes me intensely nauseous and by the time the zofran had worn off, the lidocaine had as well and I had my cumuppence. I spent the whole evening tossing my cookies and that made my chest hurt even worse. Still a tad queasy today but I'm powering though. Trying to keep water down because I'm feeling a bit dehydrated as well and that won't help. My chest is less sore than I had thought it would be and it's really only my chest; my arm, shoulder and neck feel pretty good so I'm happy with that. The good news is the two additional biopsies came back benign! Still need to do the armpit lymph nodes on Tuesday and then off to chemo Wednesday!
I'm exhausted trying to manage work with all of these appointments. I know my boss and coworkers aren't nearly as concerned with my hectic schedule as I am but I don't want to get through all of this just to have lost my reputation for being a damn good worker. I'm trying to be everything I was before while taking on everything I am now and it doesn't all fit in the box. I know once chemo starts the pre prep appointments will stop but I worry a lot about how I'll feel with chemo and working. They have me set up for dose dense AC every other Wednesday x4. I'm hoping that the bad days will fall on the weekend and I can keep my schedule going for the most part.
I still haven't told the majority of my coworkers and it is a relief to me. Only my bosses, HR and my assistant know. I don't care if my coworkers know I have BC, I just can't keep talking about it all the time. And I can't keep going through the process of telling people. It's so emotionally exhausting and picks at a scab I'm trying to let heal so I can make room for other things. Maybe one day I'll get to the point where I can talk about it but right now I just can't.
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I also wanted to add: I had my iTunes playlist on earlier while getting dressed and a song called Up the Wolves by The Mountain Goats came on and it was the perfect song for my life right now. There's a line:
"There's gonna come a day when you'll feel better
You'll rise up free and easy on that day
And float from branch to branch lighter than the air
Just when that day is coming who can say?"
It's on you tube if you want to look it up but it really found its mark with me this morning.
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Jess, thank you for the tips on icing, I knew I'd read that somewhere, and it was you, thank you! Hazel-Nut, congrats on the two biopsies being benign, yay!!! Glad all your appointments are winding down too, and you can just get to treatment. One thing we learned after the Joplin tornado, if people want to help you, let them. I know it can make you uncomfortable, but it helps them to be able to help you.
Neulasta kicked in last night for me and made me feel crappy, every bone in my body hurt and I had trouble sleeping. My choices this morning, stay in bed, or get up and drink and move. I kicked myself and got water, a banana, and my laundry basket. The sun is shining and I won't spend my day in bed. But remember, YOU come first sometimes, okay? Don't feel guilty about putting you first. Don't feel guilty if you can't make it to work. I took the day after I had my port put in off because it hurt like hell and I couldn't use my arm very well. I thought, they're gonna think what a baby I am, if I can't handle a port, how can I handle chemo? Listen to your body. I may have to take a little nap later.
I read this somewhere on one of these boards (thank you for the lady who said it): "I will never be grateful for cancer. But I am thankful for the lessons I have learned. For those just beginning your journey hold on. Reach out. Be tough. Be weak when needed. And know it gets better. " You girls are always in my heart, we can do this.
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Addressing the icing issue - I think it depends on the cocktail you're given if you need to be worried about the potential of neuropathy. I think it's the Taxol, Taxotere "T" parts that have the possibility of causing neopathy?
I read a lot of the reviews on Amazon about the NatraCool Socks and others on various boards here have mention them as well. I had ordered, before my mastectomy, these smaller round gel in packs that worked fantastic for the incision sites on the side and were an absolute godsend after the complete axillary lmyph node dissection under my L arm pit. I also used them after the port surgery. They were called IceWraps and come in a 5 pack on Amazon for about $13. I think once I start on the Taxol part of the chemo I will double sock and sandwich these babies in between the layers of the socks. They stayed cold for about 30 min each. I ordered another set a few days ago so now I've got 10.
I had a bit of a surprise at my late October MO appt and had expected since I was originally dx as IDC and stage IIb with only 3 nodes that I would be able to get by w/o running the chemo guantlet. I was upstaged to IIIa and 6/35 nodes and ILC with some LCIS and subareolar margins not clear. Into the chemo I went.
I looked at making my own gel ice packs on Pinterest for my hands. 3 parts water to 1 part rubbing alcohol, can put it in a snack size Ziploc bag, tape bag closed, insert into the quart sized freezer bag x2 snack bags and voila. Double bagged, cheap to make, cold and flexible for about an hour (according to Pinterest) [moongirljess - here's your booze! Not as fun as the real thing but, had you in mind while typing this].
Handling and managing sleep, anxiety, appointments and work.... Just getting thru the day, some days, IS hard. Most of my co-workers know about some of what is going on - the ones I am closest to and consider friends, I added to my Caring Bridge site. I don't know if this is fortunate or not, but since I was dx w BC in late April, I had started making some back up cross training w/ co-workers to try and make sure most everything I was doing was explained to someone else in detail. I'm a list maker / docmentor of detailed procedures so that the training and mentoring I do at work goes smoothly. I have had 2 other co-workers dx w BC over the last 6-7 years. My boss and HR have been unfortunately blessed with having been thru this process multiple times.
I think having a clear road map ahead and knowing more of what to expect will help all of us going thru this process... I don't like talking about it, this thing that seems to have a strangle hold on my throat, this darn BC all the time. The CaringBridge site I set up helps me disseminate info to friends and family. It is exhausting emotionally to try and talk about it when I haven't even come to terms with it. I don't always talk about what I am going thru on a daily basis even with my husband or sister I am closest too. I do find comfort that I have a good support system around me and all you ladies (and gents) are helping.
Three family members of mine have gone thru this (I didn't even know about 2 of them until I had started the process of gathering info for the genetic history!). They had keep things pretty close and had only told their direct boss and co-workers that they had direct interactions with (no water cooler gossip fodder needed there). They had a wig to cover the hairloss and took sick/vacation as need during their worse SE days.
Sorry for the long post. Welcome to the newbies. We will get thru this, one step at a time, doggedly head down and forage forward.......
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Oh - meant to mention the hydration q from AnxiousLady, water is best (none of those extra calories), but realistically anything to get you hydrated - incl Gatorade, Powerade, Pedialyte (lots of this was touted as being good for the diahhrrea), ginger ale.... Infused water w fruit or cucumber to make it "more interesting". My sister who marathons (I am an excellent side line cheerer - sorry RunningCats), does a 2x water 1x Gatorade in her hydration pack - she hates plain water......
Tea and coffee are diuretics and typically have caffeine which will unfortunately dehydrate us. I try to drink a bottle of water with each cup of either caf tea or coffee I have. As an avid coffee drinker, cutting back my 2-3/day cups has been an added UGH cancer sucks thing. I don't have the headaches any more though. I switch off and on between 1 cup coffee one day, decaf tea, caf tea and or herbal teas. However coffee will also make you poo, so pretty good unstopper for those w constipation. There is a very good thread in the forum on constipation in the dealing with side affects from tx section. Lots of poo talk, lots of remedies.... The ladies are hilarious and realistic. An occasional glass of wine or beer thru tx has been ok'd by many of the MO's out there, just be careful of consumption around dosing days and pain days. And hydrate during imbibing and after....
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Ladies, some advice, whatever you can do to avoid neuropathy, DO IT! I didnt even tell my Dr. about my developing tingling and burni g in my hands and feet. I didnt know anything about the icing. I wish i had known, because 2 years after my TAC chemo, im stuck with peripheral neuropathy. Its so aggravating, so prevent that if you can! Also, do you know about the Claritin for Neulasta bone pain? It works! My first Neulasta shot caused intense bone pain that seemed to jump around my body, really the worst pain i had ever felt.The second Neulasta shot, I took Claritin the day of the shot, and 3 days after. It seriously cut the pain in half! That made it bearable. Good luck ladies, take those antinausea meds too! I never threw up after chemo!😃Only after surgery😂😂😂 my body hates anesthesia. Be aware of your body, you may be lightheaded after awhile, get up carefully, etc. I wanted only bland food, because nothing tasted right for awhile.Even chocolate!😲
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Thanks for chiming in CaliKelly!
I had the Claritin talk and the icing talk during Taxol tx during the training as well. They were really thorough.
Had the Neulasta OnPro administration last night, I had expected to have another stinging rubber band snap when it did the injection but it didn't, that anticipation was almost worse than seeing if the cartridge emptied fully and did it's blinky thing. I was on the edge of the sofa not moving for about 10 min having my husband check to lights since it was on the back of my arm. It was all good to go. No rxn to the adhesive or tegaderm layer over it so I could shower. Had cold night sweats the evening of chemo and a little dizziness, so far that's been my only 2 SEs fro chemo. Was glad for the tegaderm over the OnPro. Have some bone pain from Neulasta, took a Claritin yesterday morning and half one last night, whole one this morning. Can't tell now if it's the old snap and older injuries or from the Neulasta.
It's good to hear from people that are from earlier waves of text on here.
I have some nerve stuff going on with my left arm from the ALND surgery so I am def going to be icing during the Taxol txs. Still have 3 more rounds of A/C to go tho before the Taxol starts.
Thank you again for stopping in!
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anxious lady—I went a cancer naturopath and she doesn’t like Gatorade. She had me buy a bottle of electrolytes called ‘E-lyte’ It’s really concentrated and you just put a capful into your drink. If you have Gatorade and like it, drink it. I detest plain water but I can do herbal teas (no licorice root or soy for me—check out the ingredients on the tea!) or a kombucha keeps me happy. Although I had an awful go with the AC, and didn’t eat or drink for days at a time my electrolytes never got wonky. Our bodies are quite resilient. (But, don’t do what I did and not go in to get hydrated)
And yes, absolutely you can make your own ice packs. Adding alcohol or karo syrup keeps them slushy and then just refreeze when you get home. I need a lot of ice packs for 1 hr 40 min run time of chemo. I go alone, but if I had a friend I would just shove my hands and feet into ice buckets and have them help keep me well iced. I have my beer cooler next to me and every 20 to 30 min I just very quickly swap out or add ice packs. The gel booties prob last at least half of the infusion time cold. I drink a liter of water prior to chemo and try to have no interruptions with the icing, thus I hold my bladder. Which isn’t great but I do it.
CBD (non psycho active cannabinol) helps prevent neuropathy, along with CBG. I take those by the handful prior to sitting in the chair.
The August chemo board has been quiet. Most ladies graduated to rads or hormone therapy. There are just a few of us posting now still trudging through the last couple months of chemo.
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When I went for my MRI biopsies on Thursday they did the mammogram to confirm placement of the marker clips and the radiologist came out and told me the clip for the left side had migrated closer to the skin than she wanted it but she'd document its placement in my chart and it shouldn't cause me any trouble. About 1am last night I rolled over and felt something poke me in my left arm and found that the clip (It was wrapped in a mesh pouch about the size of a fingernail) had started poking its way out of the puncture wound! I had to use a pair of tweezers to pull it the rest of the way out - unpleasant! I had been feeling a small bump in that area when I was changing the bandage and I'm actually relieved it was just that mesh pouch, I was beginning to worry I was developing an abscess. I sent a message to the surgeon who ordered the biopsies just to let him know, I couldn't very well push it back in lol.
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Hello to all November folks. I am a November 2016 patient and I'm just dropping by to give you some encouragement. My BC is triple negative. I had AC-T chemo, then a lumpectomy and then radiation. My center did a great job helping me tolerate SEs. Two years later my hair is back to normal, I still have some numbness in fingertips and feet but not bad. Icing during the Taxol weeks helped minimize that. I had fairly disruptive chemo brain. The thing that finally turned it around was having cataract surgery last June. (The cataracts had been nascent before treatment and then progressed faster.) The brain fog improved immediately. My onco thinks there could be a relationship between sensory input and brain damage from chemo and my experience supports that theory anecdotally. I'm in phase two of the Tapimmune immunotherapy clinical trial.
Reading through your posts brought back many memories but please believe that these incidents will also recede into memories for you. I send positive thoughts and energy to all of you.
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It's so good to see other people are in a similar boat as I am. I had an MRI 11/6 and met with the oncologist 11/7. My tx is to start with the highest dosage of A/C Chemo (4x bi-weekly) and T Chemo (4x bi-weekly). The MRI came back early this morning and it seems like there are 2 other places besides my 4.1cm lymph node that they might biopsy. Tomorrow, 11/12 I go for 3 scans: CT scan, NM scan, and Echocardiogram. I'm scheduled to start Chemo Thursday, but haven't received my port (or an appt to install it).
I started a FB secret group and have a world of support from friends and family. It's so nice to know that I'm so supportive. This weekend my DH and I camped with 5 other couples and it was totally therapeutic. I have a Internal Medicine MD friend from HS who told me to google fasting and chemotherapy. It seems there is much research supporting fasting before chemo. It helps keep nausea to a minimum and the chemo is more potent. Have any of you done this or heard about it? I'm going to ask my doctor about it.
My MRI results need to be translated, but it appears that my left breast might have cancer cells. If so, that makes me Stage IV Triple Negative which is scaring me. Everyone keeps saying to stay positive, and I think I'm doing a really good job. I just wish I could meet with my doctors 24/7 to learn what everything means as far as surgery and treatment.I sure hope that my port gets scheduled so I can start chemo Thursday. Maybe I'll be feeling good by Thanksgiving! Keep the posts coming...please!
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