August 2015 Chemo Group
Comments
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@KateB, you are right, a lot happens around here in 24 hours! Are you saying that the Decadron is what caused your burning crotch syndrome? Jeez. I'm getting that stuff every week, hope I don't get ants in my pants. If it's truly yeast, a systemic yeast remedy like yeast-away might help. What a drag. On the upside, it's encouraging to hear you're enjoying the bald look!
@Michelle, and others dealing with spiky head stubble by shaving, this is a silly question but is it possible to use some kind of depilatory cream? I am just leery of shaving my head as I tend to get those little razor cuts when i shave my legs. So far I've not needed to address this, as my hair seems to be holding up so far, but ... I expect I probably will. (Well my MO keeps telling me I will, and I believe him.)
@Grey, I hope you'll stick around and get support from this fabulous group of people.
@Birdysmom, what a riot. June Cleaver in one photo, a punk-rock Furiosa in the other. Don't you just want to pop the wig off sometime while you're in the shop? LOL
@Carolyn, you look like ONE MILLION DOLLARS.
OK, so my day ... a good one, so far ... although I did. not. sleep. (Well, i got a couple of hours between 4AM and 7AM, but that's it). No real S/E's today. At least not that I know of. One thing that is happening, and started yesterday but continued today, is that my feet and ankles hurt. My husband thinks it's because of the qi gong, because there's a lot of rather forceful planting your feet involved. But I wondered if it's a side effect of one of the meds. Anyone experienced that?
The other interesting thing that happened today was that a friend called out of the blue and wanted to know if I'd be home in the afternoon, because she wanted to bring me dinner. I figured she was picturing me as an invalid in a sick bed, even though she's seen me twice since I started chemo, and she could see I was fine. I told her I was fine, but that I'd welcome a visit. She said she really wanted to bring me dinner, because she understands it's hard on us to cope with this whole thing. (Also she had some garden bounty to use up! Don't we all at this time of year?) Anyway, she arrived a couple of hours later, as promised, delicious dinner in hand -- and kids in tow. When she handed me the food and the kids chimed in with, "You're welcome!" even before I could finish saying "Thank you," I suddenly felt a little like I was the star of a Lesson. "Here is how you treat people who are very sick, kids, you bring them dinner." But it really was very kind of her, and I told her so. (And S, if somehow you find your way to this page and you recognize this story, believe me, I really did appreciate it very much.) It's just totally bizarre to be seen as an object of pity, when you're standing right there in your street clothes on your doorstep, not sick in bed, and not feeling even the least bit under the weather. Know what I mean?
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@Jennifer46 - welcome and sorry to hear about the side effects you've experienced. I'm on AC as well and had low white blood cell count (I was 0.97 three weeks after my first cycle and almost didn't get to do cycle two). I'm on Neupogen injections now to boost my WBC. Are you taking Neupogen or Nuelasta? Hopefully your next treatment won't be so bad. Glad you are home.
My H quit his job right before I found out I had to do chemo. We have two boys and thank goodness I have an awesome work health plan and paid leave. When it rains, it pours.
@mom2aboy - I sort of know what you mean about being the "cancer friend". I just think that people are so removed from what living with cancer is really like. Don't get me wrong, I was part of that group, prior to June! Plus I know everyone is trying to be nice and helpful. So many people have said they are surprised at how I look/what I can do post surgery and chemo etc.
I've had to tell people that I have chemo every 3 weeks. Five days to a week following is generally how long it takes me to bounce back and then I'm ok to do almost anything. One person kept saying she'd bring food (when I was back to normal) and I had to politely remind her that it was super appreciated, but would come in handy when I couldn't cook and when DH needs help feeding the kids. Again. It's super lovely for the help. Maybe people thinks it invasive to ask how we are doing? Maybe all they know is cancer from TV.Hmmm. Even Walter White was gallivanting around becoming a drug kingpin during some of his treatment....
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Someone at Nordstrom called me to report that the breast forms hadn't arrived yet, so no foobs for me yet. I've been depressed the past couple of days so don't mind putting off the foob fitting; I want to be in a good mood and make a date of it (ah, how exciting that will be).
Kate, welcome to the plucked chicken club. Can you tell me more about your prosthesis--the brand and comfort level? Are you doing recon? I apologize if you've already answered these questions...my mind is mush. Sorry about your Burning Crotch.
Bluefrog, you're absolutely a badass!!
Birdy, you look beautiful both ways, but I'm partial to the mohawk...what can I say.
Carolyn, dying laughing--love it!
Welcome Jennifer46! I'm Jenny almost 46 (next month) and it's nice to meet you. I've had 3 AC treatments, and the fatigue has been worse but other SEs have been consistent. I'm sorry you've had a bad reaction. I'm dreading the 4th treatment mainly because I'm queasy even thinking about it, but that's as much emotional as physical.
Mom2ABoy, yes, it's surprising to my friends when they see how energetic I can be on one day and yet how depressive and unresponsive I can be on a different day. Mainly I'm sticking close to home and working to quell my extrovert nature. It's been hard losing this beautiful summer, but it's easier in some ways managing independently and not addressing other people's concerns.
In blissfully non-cancer news, my youngest child drove herself to and from school for the first time all by herself yesterday. I was terrified but she made it! She's a HS senior and is likely to have an internship four mornings a week at the National Zoo, so I'm going to have to get used to her driving. She was a baby only yesterday, I swear. Also, I have more cake.
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Mom2aBoy, I have been there with the friend arriving with mountains of food. My lovely ex-hairdresser is from Cyprus and despite me telling her I did NOT need any food, this is what she brought me (unannounced) one day (this was just for me and husband):
One large carton of Tsatsiki (enough for a party of about 50 people)
One large carton of hummus (ditto), plus industrial size pitta bread supply
One entire watermelon
One pineapple
One pound of halloumi cheese
Huge box of olives stuffed with garlic and soaked in lemon juice
Filo and cheese pie
We were, of course, very grateful - but are totally bemused at the QUANTITY of food supplied. She said "well I felt sorry for you so I got carried away".
Why do people react in this strange way?
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My bff from high school sent me this video (she knows one of the ladies in in.) I thought it was great & just wanted to share.
https://www.youtube.com/watch?t=209&v=i9tm0rtDpLY&app=desktop
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@Jennifer46 - I'm also on AC+T. I've been through 2 rounds of AC and overall I think the second time was easier. Try to keep notes of your symptoms and when they start so you can be proactive with your meds. I alternate zofran & compazine every 4 hours to keep the nausea away. I'm also anemic and got an iron infusion with my 2nd treatment and I think that's helped a lot. I also got thrush my first time and switched from Biotene back to Crest and didn't get thrush 2nd time around. If you have any specific questions, please don't hesitate to ask!
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Jennifer, I'm so sorry your second treatment left you in such bad shape. I hope the modifications make next time easier for you. I'm getting ready for round two next week, and hoping it's similar to the first, although I'm told many people have a harder time.
I'm the breadwinner here, too. I took leave and have shirt-term disability insurance that pays about half my usual salary. I'm 53 with 2 kids, a 19 year old in college, and a 16 year old with CP and autism (total care). Message me if you ever want to vent. I get it.
This is a great forum for support, especially since I don't get out a whole lot. I may try a live meeting next 'Monday evening.
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After all that hullabaloo in the hospital, now I have a throat infection. It started 2 days ago and I saw my MO yesterday. I'm on an antibiotic, but overnight, I've spiked a fever. Sighs.
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I forgot to tell you guys about my mom a couple weeks back. She sent me an email with an video attached to it so I didn't open it as she is a prime candidate for email virus and the opposite of tech savvy. So she calls me later that day:
MOM: "did you see the video I sent you?"
ME: no.
MOM: "it's a video with a world renown doctor that has found something that will cure cancer.
*CRICKETS*
MOM: Yah, Uncle Ken's mom did this. She is cured! If you are willing, I can prepare this asparagus for you. You have to eat tablespoons of it on an empty stomach. It's been known to cure stage 4 cancer! ... I already bought the asparagus for you!I felt so bad. I kind of just said - oh i'll watch it and get back to you. Thinking that maybe on her own she would realize it's total baloney and never mention it again. Two days later, she brought it up again. I told her in the nicest way possible, that it was an internet hoax and to think about it - why would people not be eating pureed asparagus instead of chemo and treatment...
I know she just cares. I know she's super naive and in the "if it's on the internet, it must be true" camp.
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Oh it feels so good to have people who can understand what I'm going through. Thank you!
@michelle888- I take Neupogen too. My insurance wouldn't pay for Neulasta. I absolutely hate getting the shots in my stomach but I know they are needed. My body doesn't seem to want to make WBC so first round I had 10 shots, 2nd round 9. I have had that same thought that the media seems to make cancer seem fairly easy and friends and family have no idea what's involved. Although I was just as blissfully ignorant until now.
@jenpam- Nice to meet another Jenny and thanks for sharing your AC experience. Happy birthday early! I thought I'd hate turning 46 especially with all this but it was actually the first birthday in a while that I was just content with my age. Is the 4th your last AC?
@msbrompton- Thanks for making me laugh about your food bonanza. No idea why people do stuff like that.
@buzz328- I switched from zofran/compazine to Ativan and that helped for the 2nd round. I was using Crest before the thrush. I think my body just doesn't make enough WBC quick enough and able to handle the chemo so I got hit so hard. I also had a lovely ingrown hair follicle in my armpit this 2nd round so clearly my immune system was unhappy.
@carolyn62- Yeah, it can be scary to be the breadwinner with peeps to support and not working. I had some fear/guilt of not working but that went away after chemo #2. I've been so debilitated that it's impossible. We have to take care of ourselves first to take care of them ultimately. My littlest was diagnosed with severe autism last fall. He's doing well though. It's just hard for my H to have to now care for the kids and me. We have family help but it's not like family can live with us- nor would we want to.
@bunnybumps- So sorry. Take care. Just was in the hospital for infection. Did they put you in isolation to protect you? They did with me and it was a little weird to see everyone gowned/masked/gloved up when they came in the room. I had to tell my H that at least that's a new experience- not exactly on my bucket list though ;-)
All- Did anyone have the experience of having a migraine after coming off of being on IVs? I had my first migraine yesterday and this morning I vomited. Now feeling better.
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Buzz - Thanks for the video.
Here are my thoughts:
Yes, I'm 50, but I think young women need to know that it's not just an older person's disease.
My co-worker was 34 with two young kids when diagnosed stage IV multiple met sites. I'm happy to report that she is 41 now and in remission for 2 years. Yay!!! She had 77 chemos with an experimental drug but it was soooooo worth it she said. Some of you Her + might be getting that drug as it's approved now. So, chemo can be tough, but don't give up!! She felt a lump... She never thought about being checked earlier because she was young. My friends who threw me my wig party, well some admitted that they haven't been in for mammograms for years. So, all of us have to educate our friends...and moms when they think shark cartilage or ASPARAGUS is the cure.
I think, too, most people don't know what to say or how to help a younger person who is otherwise healthy when they get cancer. We know what to do for old people: visit them in the hospital, bring a plant, a quilt, and lots of pictures of the kids. But for most of us, we're fine except for a few days after chemo - day 4 and 5 for me. So, I'm educating them, too. I want visitors because it makes time pass, I want to talk about traveling not disease, yes call me to go out for a drink on Wed, I don't have the energy to have you over for dinner but come for dessert as I just picked up a rasberry tart and ice cream at Trader Joe's. (It's good!)
So, people don't know how to help, so lets teach them so we ALL feel normal again. WE are the new face of cancer, and it's no longer a death sentence! Most of us will have to manage it for years with chemo, surgeries, and meds, and it's too stressful to think of it morning, noon, and night. Let's manage it and continue with our lives!
*stepping away from mic now. Haha
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@Sloan, good one! I just got a letter from my Dear Granny. She just turned 95, I missed her birthday party because it was the day after my first Chemo. She writes that she's sorry I'm so ill, that she hopes I feel better soon, and it takes time. She also hopes I can read her writing, cause it's ill too, LOL. That Ladies can mean only one thing.....................Road Trip!
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Jennifer46, I had to wear a mask in the ER, but once I got up to the room, no isolation, I was able to take it off. I was sent home Sunday and Monday I woke up with a throat infection. This is just the gift that keeps on giving!
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Hello dear friends, just having trouble sleeping and decided to pop in. I appreciate the humor and camaraderie here so much. (Oh and I'm a Jen too, haha. Guess there are a lot of us here, just like everywhere!)
Jennifer46, yes, I have a migraine and nausea a couple of days after my infusion days. Unless I take steps to prevent them (read: zofran, hydrocodone, Claritin the night before - because the headache always happens as I'm waking up). The migraines don't arise randomly at any other time, but the nausea does. Mild nausea is kind of a constant (well, maybe not that bad - although it felt that way today - I almost had to skip a school function and just managed to avoid the pre-function dinner, which I knew I wouldn't be able to get through without looking very green around the gills ... and I didn't want to offend the hosts). Also, I'm in WA too - we should compare notes eh?
MsBrompton, that story about your kindly neighbor is hilarious. I do think that the whole bringing us food thing is a kind of overcompensation for not knowing what to do or say.
Question for you all, what are you doing about the situations where you are among friends and some know and others don't? Tonight at the school function I saw several friends of course, and most of them don't know, but a few of them do. It's not the kind of thing you can blurt out when someone says, "So how have you been?" ... So I just say great and move on to another subject.
Anyone have better ideas for how to handle this?My sweet hubby brought me a slice of very rich chocolate cake tonight to have when I got home ... little did he know, the thought of a rich chocolate anything right now is not very appealing! I just thanked him and said I'd probably have some later.
(I'm normally a total chocoholic. I have to say, I want my taste buds back! Do they bounce back at all, or should I expect this metallic/everything tastes "off" experience for the next several weeks?0 -
@mom2aboy - I found the metallic taste fades away during my 3 week cycle. The 3rd week it is barely noticeable. But then it starts up again the next chemo.
I haven't had much time to get caught up here. I went back to work (a school teacher) so my days are busy. I am sorry to read some of you are having a tough time with SEs. Stay strong and have faith that this too shall pass.
My next treatment is Monday. As much as I dread it, I am looking forward to getting the next one over with as it brings me closer to being finished! Counting the treatments till I am done!
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@Sloan15 You are so right. We are the ones to inform the people around us what living with cancer is really like. I was very inspired by your post.
@mom2aboy I also pick and choose who I want to tell. A couple weeks back I was at my sister's house and someone asked how work was going (I haven't been at work since June!) and I just said - I'm off because I have breast cancer...then went into the whole thing. Another time, a friend of a friend, asked "how's it going" and I just said "good". Just didn't want to go into the whole backstory at the time. Again, not like I'm hiding it, but it does hijack the whole conversation into being all about me and a little bit of me doesn't want people to pity me.
I'm sure people (that know) can pick up on if you don't want to talk about it around others. Try to divert the conversation into a different direction. Ask a question about something else and hope that the conversation goes that way.My appetite is back. Maybe with a vengeance. I feel like I"m eating way more than I should. I'm going to be one of those people who gains a bunch of weight during chemo! I started exercising again yesterday. I've mental scheduled that I will take a break from chemo days 1-7, and then the two following weeks I will exercise daily. Nothing crazy but just keep my body moving.
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OMG Sloan15, I've just read about your friend who had 77 chemo sessions and came out smiling. I've got my 6th tomorrow, I'm going to stop feeling smug!
What to do when with friends, some know and some don't? Good question! Luckily I'm old enough to have more than one medical problem - I had a slipped disc operation in my neck just before getting BC, so I just rub the scar on my neck and say "I'm a bit sore today, and on some medication that's making me feel sh*t".
Had a bad Trolley Jam in the supermarket today. I only went to stock up with prunes, high-fibre cereal, carrots etc for the obvious reason, and ended up going weak at the knees and wishing I'd stayed in bed. But if we don't get out, we get introspective, no?
I'm not called Jennifer :-).
Migraine: seems to me this whole experience FEELS a bit like a migraine but is only sometimes ACTUALLY a migraine? My solution: ginger cookies. Not science but works for me.
Hugs to all - love this group!
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Hello, everyone. I've been away for a few days and it looks like a lot has happened. I am sorry to hear that so many are dealing with bad side effects. I hope you're all starting to feel better.
We had a head shaving party while camping this weekend. My head was getting sore and hair was starting to really fall out, so it was time. My dear friend, my husband, my friend's husband and my nephew all shaved their heads too!
I've been getting headaches from hats pressing my ears against my head. My glasses aren't helping either. Will my head toughen up? I am wearing a scarf today and it is better.
I was thrilled that I was able to ride my dirt bike this weekend. This was the first time I've ridden since my mastectomy in July and I worried a little bit about my port since I wear a Camelpack when I ride, but I felt really good. My stamina wasn't what it usually is, but it felt fantastic to be doing something normal. FU, cancer. You're not taking this away from me!!
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Nice one, VickiRides!
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Vicki, you look great!
This round (round two) has been harder on me than the first . . . Or maybe I'm just under more stress. There's been some family drama with my brother-in-law, I went back to work full-time, etc. Trying to stay positive.
On another note, I'd prepared for the diarrhea this time, but the opposite happened! Any ideas for how to spurn things along, other than stool softeners or laxatives?
I hope you're all doing well. I'm planning to go get fitted for my real (not loaner) foob today, and I might look at wigs--y'all have inspired me!
Big hugs.
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Oh my, y'all can send food my way! I'm at the end of cycle 2 and my dear ones are just starting meals for us. We need it since I feel bad for 11-12 days, DH works full-time and is covering more of the homeschool lessons/taking kids to soccer/swimming. Plus two growing boys at home, despite being picky eaters, they can put food away. But, even though it's a late start, between my church and homeschool group they plan on covering 3-4 nights a week! Feeling so blessed!
Neuropathy hadn't been on my radar until this week. My palms and feet feel like I fell on concrete and scraped them up good. Constant burning type pain. I have a Herceptin only infusion today so I'll ask the nurse about it. Also, when should period type bleeding stop?!?! I bled 15 days during cycle 1--my period was on time and just went twice as long. But I have spotted probably 10 days out 15 this cycle. I thought the chemo was supposed to make it stop if it did anything! Just irritated.... End rant.
I have actually been feeling better--managed a full day at our co-op yesterday plus church. Eating okay too. Took a walk last night but didn't push because it is still kinda hot here. Plan to enjoy this next week but next Thursday it starts all over again.
Love all the pics, but I have to say I always prefer the bald/mohawk looks the best. They are just genuine! Of course, I never leave the house without a bandana on... Just so hard feeling exposed.0 -
I saw an ENT doctor today and had a laryngoscopy to check out an engorged feeling around my throat. Things look okay & I was given pantoprazole (generic for Protonix) to handle excessive acid secretion.
Scarier part of my day is that my port, put in over five weeks ago, looks infected. The lower incision is itchy and has recently gotten a bit red. I visited someone in the surgery department today & was put on antibiotics for ten days. I hope the infection is only skin-deep, because there was noise about having to remove the port, and that would be awful. I want this puppy in for a couple of years.
Vicki, you look great!
Jennifer46, I have one more AC...and then four treatments of Herceptin, Perjeta & Taxotere...and then another fifteen or so infusions of Herceptin...plus radiation. Yay me!
The whole treatment should run until October 2016 or so, and then if everything looks good, I'll be on periodic infusions of a bone-building drug and ten years of Femara.0 -
Musogirl - I feel the same way: when will it stop? I switched from a Mirena (hormone) to copper IUD just before chemo started and had the joy (not) of a 14-day period. No periods is the one chemo side effect that I am looking forward to.
KateB79 - An apple a day has helped me. Plus a walk, lots of water and a Colace stool softener when needed (Costco's generic version).
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The wig. I got lucky--I went to be fitted for my new foob, and she said this one just came into the loaner bank. She thought it would be perfect, and I'm (surprisingly) happy with it, especially because I can borrow it until my hair grows back! Now that I've gone back to teaching, wearing hats and kerchiefs, I'm not sure if I'll wear this to work or not, but I definitely feel less cancery with it on!
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JenPam, good luck with the port! Sending good vibes for a quick resolution to the infection.
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KateB79 That looks great! It totally looks real in the pic!
Anyone else experiencing a bit of arm tingliness from Neupogen or Neulasta? Both of my arms feel mildly tingly, and I suspect it's the Neupogen as I haven't only felt this for the last few days (and I just wrapped up my 5 day jab session of super-nupe - that's what my husband calls it). I thought I recalled tingliness as a possible side effect of Taxol? I'm on AC right now (taxol/herceptin later)...
I got an email from my boss today. Yesterday he asked how treatment was going and how many more I had. I sort of wrote him back with a work focus (saying eventually I'll only be on monthly Herceptin making it easier to not be away from work blah blah) and he wrote back saying "You should go on vacation after treatment. You deserve it - and it'll be something to look forward to"
HA. best boss ever!! I'm totally putting him in the lurch and more work on his plate and he's telling me to stay away longer! That's support!
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Looks good Girl, have fun with it.
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Kate - the wig looks great! Also, try a black bean soup or another bean dish to keep things moving along naturally... Tons of fiber in beans with a 1-day turn around, if you know what I mean!
Musogirl and vikirides - me three for the 12- day cycle! No wonder I had fatigue.
Michelle- I had the neupogen shot today and now I feel tingly, too, in my arms. I was wondering if it was the taxotere, but maybe it's neupogen. I had the shot 5 hours ago or so. How long before the tingles did u get the shot?
Jenpam- hope u feel better soon and the port area is okay!
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I had my second infusion of DC today. When they were infusing the Docetaxel I had a reaction. I had chest pains, was dizzy, my skin turned beet red and was burning and I had trouble breathing. It felt like I was having a heart attack. It was super scary. I had 4 nurses working on me STAT to stabilize me. They pumped me full of Benadryl and another drug. They stopped the infusion for 20 mins and once it was restarted I didn't have any more problems. They ran it slower and I was fine. I feel ok now, just tired from the Benadryl. Never a dull moment.
I live in Canada and have great medical benefits. I have been able to be off work since before I had my surgery and will continue to be off until I complete all of my treatments. I admire all of you who are back at work and managing your treatments, running households and caring for kids. I am so grateful that I am able to be at home and heal and keep my house running and my family taken care of. You women are true warriors and I admire your strength.
I ended up having to shave my head with a razor. Even though we had buzzed my hair short those little whiskers were falling out and driving me insane. Sticking in my clothes and pricking my skin. It feels much better shaved.
I actually have gotten lots of compliments on my wig. It isn't even too uncomfortable. I feel like an imposter, an undercover agent. Like I should be on Mission Impossible. It is kind of fun. I either wear a ball cap out or my wig. It is funny when I go to the gym I am able to clear out the area where the free weights are. The guys all of a sudden are done their workout when the crazy bald lady comes over. I just laugh.
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Kate, you look wonderful!
DeeRatz--love the bald look and the wig. Very pretty.
I've had a bit of tingling in my fingers and am only on AC and Neupogen, so possibly it's a SE of the Neupogen. I hadn't considered that.
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