Starting Chemo September 2015; join us!
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Today was my first chemo and it went great. DH took me and stayed with me the whole time, which was really nice. The procedure took six hours but the chair was comfortable and DH sat with me and kept me company. He went out and got lunch and brought it back for the two of us. We brought TV shows and a movie and books but ended up spending a lot of time on the phone sorting out insurance problems and setting up future appointments.
I have been feeling great today. At the end of the chemo I got a neulasta injector installed onto my tummy to give me meds to increase my white blood cells. It is an odd sensation. I have attached a photo. When I felt nervous about it, I thought about my cousin and her bravery at wearing a similar device for insulin and that gave me confidence.
I am extremely doped up on medications of all sorts including tons of steroids, various anti-nausea meds, meds for my white blood cells, anxiety pills, sleep pills, you name it. All of this helps control the inevitable side effects of pumping the body full of poison. However, today was an important first step in the year long journey so it was a good start.
Got some results back today. I am BRCA1 and BRCA2 negative but I am currently being tested for 70 other defective genes. Also, my HER2 status continues to be equivocal or too close to call.
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Good evening ladies
Had round one of THC on Aug 24 I'm at day 12 and feeling more like myself. My oncologist told me 50mg B-6 1000 mg B-12 will help with neuropathy. Claridian helps with the bone pain. I drank 72 oz of water day still am I was told it helps flush out the chemo. I still have all my hair . Day 10 scalp starting tingling. I wish you all the best as you start your chemo journey. Remember you are beautiful strong warriors
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Hi everybody, and thank you so VERY VERY MUCH for including me in this group!
Lunchtime here now. After reading so many posts about pre-chemo organizing, I've skipped the usual Saturday housework stuff (except laundry) and have made a good start:
1. Since "cording" "Mondor's" (whatever) has severly restricted my upward reach, I've re-arranged my clothes shelves so what I need/can still wear this fall/winter is reachable, summer/not usable yet stuff up. Will continue this afternoon.
2. I unfortunately have a gazillion food allergies; so many ready-made microwavable and instant products inflame my lips and all mucous membranes that I have given up trying anything new. Husband, however, can eat those fine. So, I sent him out to buy unmarinated chicken, fresh fish boneless filet, and some ground beef for me to cut and freeze into meal-starter sized portions, so at least my first round of chemo (while I am still terrified of geting sepsis --- yes please laugh at me, humor helps) I won't have to touch raw stuff, just cut freezer bag open and dump into crockpot or casserole dish etc and cook. (Going to pre-brown the ground beef). Luckily stores have great selections of frozen unseasoned vegetable combinations
3. Made an appointment for Monday to shorten my hair; from what I've read, longer drops sooner? I had it short years ago, so change will be drastic but not totally foreign. Friends have already sent a gorgeous cotton scarf, and one who loves to knit has promised a white hat with pink-inside lamb ears
4. I am FINALLY making time every day to just relax, play with my dog, listen to music, meditate (do that anyway but have been skimping and shortening lately -- too much).
Anyway, thank you everybody for helpful hints and encouraging comments (especially those of you who've posted "I just had my first dose and am still here!"). I am still sort of terrified; I will be alone (husband has agreed to drop off/pick up, because when I took a cab home Weds., of course the driver coughed (so I immediately opened the window and breathed outside air the whole rest of the way home....); did I say I am still scared?????
Anyway, Happy Saturday to everybody
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Good morning twiggyOR, today I am taking mom to get a wig and next Sat my husband decided that we will get our heads shaved so I will start wearing my wig soon. Please enjoy the time with your son and if losing your hair is an issue for you just take steps to minimize the impact it has on your life. I am terrified too but everytime I lose it I give myself a minute to grieve and the next I am living my life. Hugs and prayers
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teacherhikermom, thanks for the report in and I am glad it went so well. Hope you continue to feel good. Please keep us posted, and I hope the other first week women chime in too!
Tessu, yes, it helps to be prepared, I think, which reminds me, I have shopping to do and a walk to take this am. I am getting more anxious as the big day approaches but hope I can enjoy this long weekend. And time to just relax is important too, so glad you built that into your list. I really should start yoga. On my list for one of these days...
Hugs to all!
Octogirl
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Long hair doesn't drop sooner. The bad thing about it with chemo is when it comes out, it will look like you've lost more than you really have when it collects in the drain. I'm debating between just going more buzzed cut or just bald before I start chemo. I sure don't want to see or deal with hair once I start. I have androgenetic alopecia so I've been seeing massive hair in the drain for years now and thinning at the top which thankfully since I have wavy/curly/poofy type hair, I'm able to cover it by combing up and back so not sure how much will come back with this pre existing condition already. Plus I'm at the age, 51 on 9/28, where menopause is around the corner and you thin more just on that. Add tamox to the mix and I'm thinking I may have to remain buzzed cut forever and just deal with caps and such.
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Tessu, I didn't touch raw meat, the trash bin, or the cat box all the way through chemo. I think you're smart to do what you can ahead of time. I have diabetes and my partner can't eat gluten, so we pre-cooked and froze small servings for nights we were too tired to cook.
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More challenges this week to go along with my impending chemo start on the 10th. My cat has been missing for 4 days, my elderly neighbour just passed away at home today (ambulance, fire trucks, police everywhere) and my car was badly damaged in a car accident a few days ago (my kid driving, not her fault, everyone ok) but leaving me stranded and depending on others for rides while its repaired. Really? Talk about when it rains, it pours.
So, I will soldier on because that's what we all have to do. Gathering my supplies in the next few days and preparing myself as much as possible for the hair loss. I had a haircut last week but couldn't pull the trigger on a really short style. I settled for a "shorter" than normal cut. It's chin length now and I will tackle the buzz cut when the fallout begins.
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sorry about the challenges, Lindy...I had my own challenges today though not as bad as car being wrecked: but WARNING: RANT COMING...
MO prescribed neuprogren. CVS online called to arrange delivery (you get a supply prior to each treatment, and it must be refridgerated). Because finding a time to home for delivery was difficult, they said they can have it delivered to my local CVS store and I could pick it up there. Great. However, I live in a small town, and I asked the online people not once, not twice, BUT THREE TIMES: "are you SURE they will refrigerate it when it arrives? This is a small store and a small town and I just don't know if they have much experience with this type of thing."
They assured me that the pharmacists are trained to deal with refrigerated shipments and it wouldn't be a problem.
So, got a robocall from CVS that it was there and ready to pick up. Went to get it, they asked for my birthdate four times, frowned at computer for five minutes, said they didn't have it. I suggest they just look in refrigerator since it was supposed to be refrigerated. They did. Nothing. Came back and frowned at computer and said it had been delivered to San Francisco. "Did you ever use to live in San Francisco? We see a SF address here." Me: "I did live there but that was EIGHT YEARS ago AND I had Kaiser at the time so I never used CVS. Besides, CVS online confirmed my address at least three times...and you called me that it was here!" Ok more frowning at computer. Clerk gave up, turned it over to head pharmacist on duty. He did something in the back I couldn't see, then spent half an hour on the phone. Finally came out with a big box marked "NOTE TO PHARMACY: PERISHABLE: REFRIDGERATE". In at least five places on the box.
You guessed it, box was sitting in the back receiving room at room temp for at least 24 hours. The SF address the clerk was referring to was the address it was shipped FROM. Pharmacist had been on the phone all that time, not trying to find it, but rather to the manufacturer trying to figure out if it was ok. Which he claims it is.
As it happens, they shipped in cooling gel and a cooler, and it was still cool to touch. So I took it but when I signed for it I made a note on their paperwork that it had been left at room temperature, probably for 24 hours (their records show they got it yesterday), and told them I would take it home, refrigerate it and be right back on Tuesday am if the MO (who I can't reach until Tuesday, of course) is at all concerned. I told them how upset I was, especially since the online folks told me this exact scenario would never happen. Pharmacist then proceeded to tell me it never has happened before and that UPS was at fault because usually they bring pharmacy shipments straight to the pharmacy, not to receiving. I pointed out the stickers and wording in big letters and told him I thought there was plenty of fault to go around. Somebody from CVS accepted the shipping and left it in the receiving room, obviously. I asked if there were any procedures in place for the pharmacy to check with receiving on a regular basis for shipments. No, of course not. Even though they knew (and told me in robocall) that it had been received..
I imagine it will be ok, but I came very close to being lazy and waiting until Tuesday to pick it up, since I am leaving town for Labor Day weekend later this pm, to visit friends and family in another town. If I had waited, it might have even meant postponing chemo until they could get another shipment.
Bottom line for me: next time, I will have to wait at home for delivery, or hubby will, even if it means missing work. I cannot trust CVS (and I believe they are the only game in this small town; although there is a Costco pharmacy so I may ask MO about that). The exact thing I was worried about and that they repeatedly assured me would not happen, did.
Thanks for letting me rant.
Octogirl
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wow Octogirl..that's so infuriating, for sure. Bet that won't ever happen again with that pharmacist. You may not have to wait around for delivery and continue using the CVS if you "gently" remind them of what happened and to be prepared for your next shipment.
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They say we have to manage our stress, they say that stress management is vitally important to our recovery. But then shit like this happens. Cats go missing, cars get wrecked, prescription problems, insurance problems (my insurance still refuses to pay for Luropn and I am now appealing to the next level up). As if having cancer and facing a dread disease isn't hard enough, then there is all this peripheral stuff on top. God grant me the serenity...
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I'd rant, too!
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thanks for understanding, all. Yes, teacherhikermom you exactly describe the feelings going through my head (though I certainly wasn't serene :-). I wanted to shout: "hey you ()*)(*#)( I have CANCER...can't you stop trying to pass the buck and even just say you are sorry this happened and that you won't let it happen again???"
which of course was the most infuriating part: no one at the local cvs wanted to take ANY responsibiilty much less apologize. clerk actually told me it WAS delivered to SF, in a tone that implied that was my fault for ever having had the nerve to live there (and no, I am not exaggerating that) and then did NOT apologize as she informed me that actually, the SF address she saw in the record was the address it came from not to. and Pharmacist just did not get that if CVS signed for the package, they had responsibility for appropriate handling once they signed for it, NOT the delivery guy. No one ever said, "I'm sorry." (so Lindy, I am actually not convinced it couldn't happen again. He really thought it was ALL UPS's fault. So, next time there is a new UPS guy who hasn't gotten the word that CVS signing for it isn't enough...well...
Ok, I am going to let it go now. Really. Time to enjoy the weekend. We are in the bay area for part of the weekend, family party to celebrate the engagement of a nephew tonight; visit with friends tomorrow. Chemo preparation can wait until Tuesday
hugs to all and have a great weekend.
Octogirl
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Wow. No apologizing for the mess up at the end. Nice. You used to live in SF? Love SF. Rents here in the Bay Area are nuts as my 630 sq ft 1 bedroom apt in Fremont is now renting at 1845 for new people coming in. I'm looking at moving in with my bff in the next year or so or I'll be pushed out for sure. Nuts!
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so I was just over on the Cytaxon/taxotere thread and there are some nightmare side effects. I'm starting to freak out. I think I'm going to ask for my onc to prescribe a mega giant huge dose of pain meds so I can just drug out through the worst of it. I have so much anxiety from just everyday life I have no more tolerance for huge amounts of pain. And aparently constipation at biblical levels is on the menu. Holy crap (ha ha pun) I don't even know what to take for that. Any suggestions what I should have on hand? I knew about the diarrhea but not possible constipation. I just feel so unprepared even though I've been preparing. And all my long hair got cut off today. I just want to run away.
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AnnieB43, I wasn't sure from your post: do you already have these side effects, or are you anticipating them? (I am guessing the later since you also start next week?).
I get terrible constipation from pain meds (so your plan to just ask for a huge dose might not work for me). Even OTC NSAIDS are really problematic in that regard, which is a big problem as I have arthritis. However, for the lumpectomy surgery I found generic stool softener, OTC, did the trick. It really was a non-issue and I was sure it would be a big problem. I'd talk to your MO about it, have the stuff on hand, and take it one treatment at a time. But I know what you mean about running away. I want to run away also!
Do buy stool softeners though. The instructions say you can take one to three per day (or at least mine did), Generic brands have same ingredients but are a lot cheaper. You can start with one pill and up the dosage. And, if you don't need them, the peace of mind might be money well spent...
Hugs to you!
Octogirl0 -
I start on Tuesday at 1. The nurse told me tylenol should take care of everything, but like a moron I went fishing around the boards and there are some nightmare posts. Perhaps it's heavily weighted to bad posts than good. I hope so. I'll take your advice and add the extra otc stool softener to my growing pile of meds. It feels apocalyptic so maybe that's why I'm over prepping.
Hugs to everyone and thanks for listening. We're all going to get through this! We just will!
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Annie, I had 4 TC. I did have side effects but totally manageable--not much pain or GI, no nausea, no mouth sores, kept my nails, had good WBCs. Try not to get freaked out by the worst side effects--while some people do have them, it seems more typical to have discomfort and inconvenience.
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I am experiencing nausea and loss of appetite. Just got my doc on the phone (on Saturday evening, I feel so guilty) and he prescribed an extra anti-nausea pill on top of the 5 I am already taking. I have a *very* sensitive tummy. I felt awesome last night and this morning but as the day progresses I am feeling worse and worse. Red as a tomato for some reason as well. I am trying to drink a lot but not eating almost anything. Thinking about food makes me want to barf. Still trying to get my 10,000 steps as perscribed and on the treadmill as we speak.
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for constipation ( which I had from chemo and pain meds combined) I found best solution is 3 colace (softener) and 2 senekot ( pusher) together. Either one on its own didn't work. Both are OTC.
Don't wait to take it until there's a big problem. It can be quite dangerous. I would say if you go 48 hrs without going start some softening/pushing regimen then next time take it prophylactically at time of chemo.
And I would avoid Tylenol. Chemo puts a load on your liver and acetaminophen (Tylenol) is also very hard on the liver. For that reason, I refused Vicodin as my pain med because it is full of it. I got oxycodone instead, and if I needed anti-inflammatory I could add an nsaid if needed.
I am very surprised a chemo nurse recommended Tylenol during chemo.
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Teacherhikermom, thinking of you and hope you will fell better soon
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Thanks Jackbirdie. I threw out the rest of my Norco and am going to get an rx for Oxycodone from my MO so it's ready in case. Besides Imodium AD, constipation stuff, anti nausea meds and anti inflam meds to have on hand, any other meds? I'm alone for real this time. Bro can't come up and friend who lives here is busy with her sister who is end stage pancreatic cancer, so I need to be prepared as much as possible and assume I won't have help.
For food, frozen ready to eats from Whole Foods and Trader Joes for dinner stuff, eggs, toast, cereal, pudding, apple sauce, fruits, salady stuff, pbj--- for eats. I don't cook a thing now, much less on chemo which sounds like it does you in to some degree. I haven't read many people doing poorly after sx of any kind but have read a lot of SEs on all types of chemo so I'm a bit worried about how I'll do on my own.
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Artistsa- everyone is different. For me sx was worse than chemo. If you are getting Neulasta, you can ask for a script for loratadine/Claritin You can get the Claritin OTC but don't get Claritin D just reg. it was cheaper for me in prescription.
Do you have your steroids to take before, the day of and after? I was given dexamethasone. It also helps with nausea.
You sound ready. See previous posts about baking soda swish for mouth sores and tea tree oil for nails. And coconut oil for everything else. I was surprised at how useful that was. It was a tip from my March chemo group and we all ended up using it for lots of things.
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Hi All, I will be starting TC 4 cycles every 3 weeks on Sept 10th. Will also be on Neulasta day after each cycle. I will be using the Penguin Cold Caps as well. Glad to have found this site. Thanks for starting it!
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I'm digging through the April thread and found out one thing I didn't think of. What the heck to wear on chemo day with a chest port. I got excited when I saw this clever idea but no plus sizes. What the heck?? Not everyone is max XL.
Anyone know where to get such an apparel. I'd rather not have too much out for view even though I'll have a private room and I run too warm to be asking for their warming blanket.0 -
From the April thread-
http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/
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A button-up shirt works fine. The nurse can then run the tubing between buttons if you want to button back up.
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What is the deal with steroids? Does everyone get it. I'm way overweight and really don't want anything to make me bigger.
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Feeling a bit better. Out of the blue, a woman friend contacted me ---- I haven't seen her for 5yrs (since my dog and I quit agility, obedience, and toller club due to both of our health problems). She said she helped a friend through chemo when they were both in high school, and more recently helped her sister through raditaion therapy. She volunteered to VISIT ME in the infusion clinic Thursday when I get my first doses of Herceptin/Taxotere!!!! And, she says she totally understands how freaking terrified I am about this whole thing!!! I was so surprised and so grateful for her offer, I burst into tears.
ksusan: Thanks for your advice about what not to handle. I bought disposable plastic gloves and have already started using them while cutting up meat, fish, etc --- but now will DEMAND that husband handles the trash. I will still have to pick up dog poop, but have always inverted a bag over my hand while scooping it up --- poop hasn't touched skin in years, and onc doc said that's ok.
Jackiebirdie: I got Oxycodone from my oncologist too, because of the tylenol/liver damage aspect. I have needed Tyl-w-codeine off/on for years for chronic pain/nerve damage problems (neck, lower back). Has worked when needed for those, but did nothing at all for the surprisingly bad pain in my right Monder's - affected (formerly better) arm. So lucky the smallest Oxy dose works enough I can sleep at night.
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octogirl: OMG I have No Words for that awful screw-up over your meds!!! Just (((((hugs))))
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