Starting Chemo March 2015
Comments
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Shaz, you're a little far away to give you a smack but we can give you a verbal beating if you start worrying about work
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Jackbirdie - thanks for reassuring me that it is normal to feel that sensation in my throat from the port. I kept thinking that maybe it had slipped or something since it seems like such a strange place to feel so sore.
Rleepac - you look great with your hair short! Thank you for posting your pic. It makes me feel braver, somehow.
Shaz101 - you got that right about this needing to be about you and not about work! I hope you have someone nearby to give you that smack in the head you have requested if you get wrapped up too much in work. Otherwise I'll have to find an emoticon that can do it for me from a distance. I've thought the same thing about my hair - what if I'm one of the lucky ones and my hair doesn't fall out but I went and shaved it anyway?
Had a really funny conversation with my parents this afternoon on the phone. My mom went through chemo last year and we were talking about hair and not having to shave legs and all of that. But then she starts talking about losing the hair in her basement (her own terminology)! Then my dad starts chiming in. The way she was stating it and his reactions - I was laughing so hard I was crying! These two are in their early 70's - not a conversation I thought I would be having with them today!
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ann- I absolutely love your knowledge of Greek Mythology to reduce the beast to a manageable size in our brains. I am constantly amazed at the brilliance, creativity, strength, and caring if everyone in this group.
And So-she-did! I am still lmao over your parents. As they say, cancer changes everything, and it is a not insignificant gift when something so inherently negative can still give us an opportunity for laughter, and a chance to connect with someone in an entirely "fresh" (pun intended) way. BAAAAHAHAHAHA!!!
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Shaz, you're a little far away to give you a smack but we can give you a verbal beating if you start worrying about work
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people do strange things in stressful situations. My husband has male pattern baldness, and we have both worn my wigs around the house laughing. He looks like a Rolling Stones throwback haha! Go figure. I told him we can keep them for Halloween after chemo and dress him up as a woman. Our standing joke is soon I will have less hair than he does, and now he gets to tease me the way I have teased him about hair issues.
But the basement stuff - priceless! You can't make up that kind of funny!
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STARTING CHEMO MARCH 26. Got ort placed yesterday....it's still sore today!!
AC - 4 cycles
Taxol - 12 cycles
Herceptin- 12 months.
Neulasta- hear this shot is awful.
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rellpac...Beautiful!!!!
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rleepac...Beautiful!!!!
Trvler I teach teacher education classes to bachelors and masters degree students working on their credentials, as well as math and science teaching methods classes. I am a credentialed science teacher- and I teach math part time at another online university...although I have put that on hold for a bit!
So today I received a notification from my chart, the electronic chart, and my MO has ordered a BUNCH of meds for me...so I guess this is really going to happen...sigh. I get my hair cut tomorrow, and I still need to get my port put in...oh and make a chemo bag...looking forward to the days when I can make plans and not have to say "it depends on my chemo schedule and how I am feeling!"
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Welcome, Lhuff! Sorry we meet this way. I have only had one chemo treatment so far, and had the Neulasta shot the day after. Honestly, I can barely remember it. It is s subcutaneous shot they gave 'me on the back side of the non "sln side".
It didn't hurt and I had no pain after. I did the Claritin days 2-6. I wish you the best. Big hug.
Katy
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hi everyone . Iive been awake since 4am thinking about everything. I never mentioned this but I've had terrible joint pain for the past few months. Spine surgeon had me on 20 MCG Butrans patch which I understand is the dosage for cancer patients. What do you know just when I ask to titrate off I find out I have cancer! I don't know what's causing the pain but the meds/patch must have been covering up a lot. The nagging thought I keep having is that this has something to do with the BC. Im so sorry for making this all about me this time. I read every post and want to respond and give each of you my support. Getting the hair cut super short this am.. I'm really gonna try to rock it but not feeling it at the moment. -
supernanny-isn't it a shock to learn about treatments courtesy of your electronic chart?! I was only 10 days out from my left mx when i learned (by looking at my online chart) that i was scheduled for a right mx and ln dx just 2 days later. Talk about a panic attack! Our human docs need to remember that timing is everything when it comes to delivering news like that!
On an unrelated note, i picked up some Burts Bees honey lozenges last night (I think they're new, i hadn't seen them before) they're really mild and the honey is soothing/healing if you're dealing with mouth sores.
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Slothaboutt!!! Yes...that electronic chart!!!! I do like it, but is can cause panic! So apparently I get my meds from the cancer center pharmacy. I have had my echo, and I have another appt with my MO in about 10 days....i have a feeling my port will be in and I will be headed for the infusion center shortly after that.
The thought of the IV meds and side affects is really starting to get to me - which is strange as I am typically not a worrier....from the time i was dx...the biopsies, surgeries and appointments didn't bother me...but the impending chemo is what bothered me. I know it is a matter of just doing it, getting through it and getting it behind me.
I actually asked my MO if I really had to have it since it was just "a little" cancer in the lymph node....she and my DH gave me the "look"...well I thought it was a fair question...!!!
Off to get my hair cut-its in the middle of my back....and going to above my shoulders...time to give lock of love some hair!!!
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Diane,
I don't know how women get past the worry that every issue is a manifestation of BC moving on to another part of the body. I keep worrying that for the last year I've had aches and pains and changes that I've chalked up to turning 50 that may have actually been BC setting up camp elsewhere. The scans offer relief but then the weird feelings are still there or something pops up from late night Google searches that confirms some fear. I hope you get to the bottom of your joint pain and find relief both physically and mentally, especially since we all need to put our positive energy behind the chemo drugs we're playing host to over the next few months-they are rowdy houseguests.
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Good morning Ladies, I finished AC/T on 11/25, and you got this! I wanted to drop by with piles of hugs, take as many as you need. On 3/25 I will be four months out from the end of chemo, it does end at some point! The good news - my hair is already over 1" long and thick and soft. And my nails are back to normal and look pretty. I take Biotin daily, cheap and easy to do. Ask your MO. Good Luck!
FYI - The American Cancer Society sponsors Look Good Feel Better, you can see it online. They have a great make up class to help with all the skin issues as well as wigs and scarves. And they give you a very nice make kit to take home for free! My class was taught by a cosmetologist and a infusion nurse. It was a blast. We laughed for two hours. Even though we were putting on eye brows and learned how to hide the side effects of chemo, it was all about how we can feel good, and look great. Highly recommended to make the time to go.
Have a great weekend! Take Care!
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rlee, your buzz looks FANTASTIC! My buzz is meh, okay. I wasn't traumatized by it and my wig isn't bad, not at all. Just don't care about it, really. I was only concerned about how my kids (adult daughter, teen boys) dealt with how I looked. I didn't look sick before. Now, I do. It was a shock to them, but we're all coming around to it fine. My daughter does cosplay conventions and we're already talking about my swiping some of her more...er...interesting wigs. Purple, anyone? Platinum blonde? Green? LOL
Day 3 of my first AC treatment and I feel basically good, no major SEs so far. I go in for my shot in half an hour and go off the steroid tomorrow so I'm not expecting that to last, though. I took my Claritin. No Oxy, but if it gets bad, I have Hydrocodone (I think that's what it's called, is an alternative to Oxy) from the surgeon who did my port. Nervous, but one baby step at a time.
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Princessofmeh - my 13-yr-old DD has just started doing Cosplay and she loves it. She's into Anime and I get to take her to the FanimeCon in May. Not my thing, but it makes her happy
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My daughter started going to Otakon in Baltimore after graduating high school. She and bunch of her friends plan/create their costumes all year long, share a room, and have a blast. Considering the craziness I got into at that age...Let's just say cosplay, IMO, is healthy fun in comparison, LOL. Sadly, she just informed me that she thinks she gave the platinum blond wig to one of her buds to cannibalize for a subsequent costume and she says the purple one is too long, highly annoying, and probably very tangled. Green it is then!
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DianeDavis- NEVER apologize for saying what's on your mind. We can't help each other unless we do. Before my dx I also had sudden onset bilateral joint pain, inflammation, hands, feet, knees, some bone pain in other places. My liver enzymes were up to 3x high normal. I was convinced I had RA. X-rays, blood tests, meds to reduce inflammation that caused LEs to go up more. Finally NP checked uric acid and it was very high, way out of high normal range. I never had a gout type presentation, and still wonder at her clinical dx of gout. When bc came along, I was convinced there was much more going on and until I had the thorough work up at MO I never rested from sneaking suspicions about mets.
I had to decide what was more important. Getting my liver ready to fight cancer, or getting to the bottom of the pain. I am 57, and the bitch of a spot many of us are in our bodies are going through vast changes all the time, but in our 50s, especially, menopause, arthritis, and bc become much higher probability. So I stopped every single med I could safely go without, and started look looking, not for crackpot solutions, but reasonably backed up ideas I could try that wouldn't interfere with other body function. I tried one thing at a time to minimize variables. I will share one thing that seems to have helped both my joint pain and liver enzymes: I drink the juice of one (usually organic, they are juicier) lemon in hot water first thing every morning. In two months my pain is much less, but the labs don't lie. Uric acid down drom 8.5 to 5.5 (5.9 is high normal) almost 30% decrease. ALT from 3x normal to normal, AST 70 from about 120.There are so many suggestions, great ones, on this thread but there's no way we can do it all. We have to pick and choose. The only benefit of doing everything is for once we'd probably hydrate enough hahaha.
Just think- chemo brain is real. But we also start to feel the same effects in this age group from menopause.
Joint pain- bone mets? One of the many forms of arthritis that beset us in this age group? Reaction from Neulasta unrelieved by Claritin? Who the F knows? This is why it's good to write down your symptoms, what and when, and report all to your medical team.
I hope all of us can somehow get through our chemo regimens without a world of additional related or unrelated other conditions. We will, however, come out the other side older, and perhaps forced by toxic drugs into even symptomatically older women than we would have been, had we not been touched, no, manhandled, by breast cancer.
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princess of Meh- so glad to hear first one went ok. And that you're ok with the hair thing.
I couldn't help myself to mention that hydrocodone is a mixture of oxy and Tylenol/acetaminophen. Please look up the dangers of acetaminophen. It is processed by the liver, not kidneys first, and is not something you want to take long term. I am forbidden to take it. Not everyone has My problem, but going through a chemo regimen , you might find you need pain meds more often. if so, having the simple oxy imo would be better, as you could add a tylenol or Advil as needed, and you would not be for be forced into taking acetaminophen every time.
Doctors in general don't like to give it, but your onc will understand if you mention you are concerned about all that Tylenol while your liver us already under siege by chemo.
Hugs, Katy
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Yeah and don't take Hydrodone and Tylenol at the same time.
Katy: Excellent post above. Please keep reminding me about the lemon juice thing.
Super: I am really stressing about chemo side effects, too. I just keep wondering how I will function in my normal life with the possibilities.
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Huh. The hydro-whatever is in my chart -- I took in all my scrips before the first treatment to make sure they had them all in my record. No one told me not to take it. I'll hold off, though, and call first if I feel like I need more than Claritin. For now, I feel fine, though.
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I am wiped out today. I am a bit sore on the biopsy side and my daughter had me up half the night because she is sick. I haven't slept well all week. It scares me to think that if I feel this tired now what I will be like with chemo.
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hi all, I'm dreading my next infusion on Thursday. We decided to have a birthday party for my son on Sunday after so I know I'll still be dragging that day.
He'll turn 6. We want to keep things as normal for him. Fortunately I have an amazing DH and amazing neighbors and they're going to hold the fort for most of te party. We're just doing snacks, cupcakes and some games. Then a week and a half after we're headed to legoland Florida for a few days. Right at the peak of my energy level. Then that week infusion #3. I must say that I've felt really good since about Tuesday evening going forward, I had my chemo on Friday. I've been cleaning my house and making sure things are put away and clean and neat. Now that I know what I'm going to feel like I'm prepping for it. I actually feel more energy than pre-chemo. It might be because I'm comparing my energy level to how I was dragging those 3 days.
As for work, everyone's been very understanding and I'm making sure to schedule meetings and calls on the days that I know I'm going to be feeling well. I've been very public about what's happening for a few reasons. I'm a high energy person at work, and I'm sure people will see the change and wonder what's happening and another reason is that we work in a "collaborative" workspace with open desks and we see each other all the time so me with a wig will generate questions. They'll know it's a wig since I cut my super curly hair short and the wig hair is longer and straighter than my curly hair. The hair cut already created quite the "buzz".
On Monday I'm attending a Look Good Feel Better class near my office. I hope I don't forget to bring my wig! My mother in law had breast cancer and went to one and she said it was great meeting other women that are going through the same thing.
I hope everyone is doing well. There are better days ahead!
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yeah, unfortunately all the docs seem to get a memo or go to a required conference where they are told that hydrocodone is less addicting than oxy and because it has the Tylenol in it, it works on pain in two different ways. They ALWAYS try to give that to people first, unless there is a good reason not to. So your doc did nothing wrong in prescribing it to you. And you certainly did nothing wrong in filling it. It's good to be prepared.
Princess Meh-I'm just trying to help all with the learning curve in case they find they do need pain meds often.The only people who seem to get easy access to oxy are the illegal dealers and users. People like us, with CANCER, have to fight for it. But it is better, gives you more options, and is a very cheap med. It comes in 5 mg (white), 10 mg (pink) and higher. Insurance usually pays the same for either dose, so I always ask for 10s and I get more flexibility because I can cut them in half if I don't need the 10. Get more, less money. I have a prepared speech (sincere and truthful, but prepared) on why I want it, what my pain levels are without it, how I can not live a normal life without it, how I am aware of its addicting qualities, and how responsible I am with it. And acknowledge that since our relationship is new (referring to me and my MO here) they will learn in time that I am not an abuser. That everyone's threshold of pain is different. And that I dont think it Is right for me to have to live with the fear of cancer and the paIn that goes with its treatment, when modern medicine has come so far in effective ways of dealing with it.
I seem to be very spunky today! Maybe because I finally got a full night of sleep last night! Yay!
Hugs to all, Katy
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Trvler-so sorry about the pain and malaise. I was quite sore after my biopsy and after the port insertion too. And there were days before chemo I was so exhausted I slept all afternoon.
I have such high respect for all of you who are keeping your children's and DH's lives as normal as possible. That takes enormous energy and I am not surprised you feel fatigue. We all know now that since most of us have been through chemo 1 that there is a wide range of experiences. But it does not necessarily follow that if you are fatigued now, it will be worse after you start chemo. I seem to feel better. I know it probably won't last, but having a plan and finally getting that first chemo out of the way seems to have reduced the fatigue-inducing stress by half.
Best to all
Katy
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I hope you are right. I have two kind of high maintenance kids and I feel badly even leaving them right now for 2 nights to go to NOLA. I guess they will survive. Their cousin comes to watch them. She feeds them junk, leaves my house a mess and never gives me any change back when I give her money for any of their expenses. But she is the only game in town right now and my kids love her. (mostly because she feeds them junk and lets them play with her phone)
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SC Coqui- sorry about the dread. Great that your neighbors and DH are helping so much.
I am interested to hear how you like the Look Good Feel Good. I had assumed I was in too small an area for us to have one, but I found out just this morning the hospital 5 minutes away does one once a month. So I'm going to try to get in. I might meet some potential local friends (since I am new to this area and have not a single friend for 30 miles). That would be great
So feedback, please
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Trvler- any port in a storm. It's great that the kids love her. That's important. But you made me laugh
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I'll definitely let you guys know how the Look Good Feel Better class goes.
I've been telling my husband that as terrible as it is getting this disease at least it's happened to us where we are. We live in a tight night neighborhood where everyone is always helping each other out. I just had one of my Bunco Night ladies drop dinner off for us. My hospital and infusion center are 10 minutes away from our house.
I'm in South Carolina but we're about 5 miles from Charlotte, NC as the crow flies.
If we would have still been in NJ all of our resources and support would have been at the very least 30 minutes away, and in some cases hours away.
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Love Charlotte. Used to live there.
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