November 2014 Starting Chemo Crew

thrifty1 · November 2014

Hi Ladies I'm here with some encouraging words for day #3. 1st day of h fusion went great, no side effects other than those darn headache from the dexamethasone. Day 2, off and on nausea but not bad plus headaches. Slept all night last night and ready to hit the town today lol. I've been rinsing my mouth as precaution. Got my Nuelesta shot yesterday. They didn't say 10 day delay for me either. Yikes. Hopefully it will go just as smoothly. Overall...not as bad as anticipating. Hope these posts continue to relieve some anxieties for some of you ladies. Hugs and prayers!

Jumpship · November 2014

is it Day 4-7 or 7-10 when your immunity is at it's worst? Anyone know? 21 day cycle of TCH here.

MidLifeCrisis · November 2014

minivan i was told it's the 7-10 window ... for TC anyway.

cc3373 · November 2014

hi all

Checking in, know you're all getting hugs, love and prayers

Me, nausea today but tired and well otherwise - sipping ginger tea....

knittingPT · November 2014

MidLifeCrisis,, my Zofran bottle has two big yellow warning stickers that say "may cause drowsiness" and "may case headache" so those must be common side effects.I also had some muscle pain but it was in my neck and the day after my neulasta shot.And, wanted to say we are close to the same age.I will turn 39 on Christmas.I always host a large "Carynmas" birthday party for myself.This year I won't but I can't wait until next year for my 40^th!! I will, hopefully, be done with cancer by then and ready to move on to better things!

Thatcameragirl:days 3-4 were my worst too although I didn't get back to "normal" until about day 11.Then I had a couple of freaking amazing days where I felt just like myself with no weirdness at all.I hope I continue to get those days mixed in.

Tallylassie:I have had some great days mixed in with the not so great days and I am so thankful for that!!I wanted to say that I LOVE my port. It does make me feel a little bit like a borg though. My main reason is that I like to knit/play on the computer, etc during treatment.It is very uncomfortable to do that with a needle in the arm.I have also heard (but haven't experienced personally) that with the IV there is some burning sensation when the drugs go in.With the port, I don't really feel anything and they told me the drugs get diluted by the blood more quickly because it goes into a major vein instead of a small one.

Amylsp:I'm sorry about the heartburn.That is no fun!I hope they can find a med to control it for you.

Minivan, my doctor said days 7-10 were lowest immunity.My blood counts (white blood cells and platelets only) were down at day 7 after my first round.They put me on pre-emptive antibiotics over that weekend just to help me out a little.By my next infusion (day 14), my counts were back to my baseline, pre-chemo levels.I am doing A/C so I don't know if it would be the same.

My update:I had second a/c on Thursday.I decided to take the Zofran this time and I didn't even have any queasiness yesterday.So, I am going to take it again.I am sleepy today but not too awful.I have some friends coming down from Flagstaff (where we lived until beginning of last year) to bring me some cheer and hugs.I'm looking forward to that! I'm thankful that I'll be on my "off week" for Thanksgiving!

I am appreciating this board more and more as I move forward. A lot of friends that were super supportive at the beginning really don't want to hear the long drawn out details of side effects and treatment. It's nice to have somewhere to share and hear about others' experiences. I am just starting this journey (because my chemo came first before surgery) and it is nice to have some others on a similar time scale. Have a great weekend!!

Dee4C · November 2014

Hi all, I went shopping all day yesterday for wigs and did have luck with one at least, so I was so excited! It was a hair piece to wear with a hat. This is my hat that I always wear now that it's so freezing in Chicago. I showed my kids this picture and they had no idea that this was fake hair, I look exactly like this (well this is a little longer than my hair). I imagine I will be wearing this a lot with different hats. Still trying to find another wig but the lace fronts I've been trying you can totally see the wig hairline and they are scratchy too. No luck with other hats. Did buy a scarf but it's just ok. Have to keep searching, feel like the clock is ticking and I'm freaking out!

Wishing everyone well! Warm hugs and thoughts being sent your way.

Liwi · November 2014

Midlifecrises and TallyLassie - a friend who went through chemo last year gave my a small bottle of Tea Tree Oil for my nails and my chemo nurse mentioned it when we were discussing what might be different when I switch to Taxol. It has a strange odor but you only need to apply a little with a Q-tip. I've also had several recommendations to keep my fingernails painted with clear polish.

On hands, I also have started using cotton gloves at night with Udderly Smooth hand cream which was one of those recommended by the oncologist office education material. Got both on Amazon. This morning I also tried putting some coconut oil on my hands and face. My hairstylist had recommended it and I had gotten some to add to my morning smoothie. I made the mistake of not using sunscreen on a somewhat sunny day for a very brief walk without a hat and got surprisingly somewhat burned. So now am very diligent and have sunscreen everywhere, purse, car, by door, etc.

I also have nose problems but had allergies before starting chemo and switched from my prior medicine to Claritan which I've been taking every day, Also use saline rinse spray.

Love the picture's and the cute short haircuts. My stylist also did one for me. While I only had it a little over a week it made it a lot easier when my hair feel out. Also gave an idea of a short hairstyle when it grows back.

lucyshoe · November 2014

ThatCameraGirl: I'm another Day 3-4 extreme fatigue girl. I'm on day 9 of my 2nd infusion now and I still haven't quite regained a full day of feeling okay this week. I didn't know I could be so tired or sleep so much. I remember a couple of days of feeling absolutely amazing in the 2nd week after the first infusion, so I hope they're coming soon again.

This week has been all about a persistent cough and a constantly dripping nose - extremely annoying, but I still haven't experienced any nausea so I shouldn't complain too loudly (and I should continue to knock on wood that my good fortune continues)

I've never told my backstory here, so I'll give the Cole's Notes version now:

I'm 48, single and live alone with my dog, Daisy. I've been working at home as an editor for a legal publisher for the last 6 years or so (been with the company for 13 years). I'm on leave until the end of my radiation sometime next year. I'm lucky that one brother lives right across the street from me with his wife (if you'd told us when we were teens that we'd be willingly living in such close proximity, we'd have never believed it!) and I have dinner at their house every night since starting chemo. Although since I've never been very good at feeding myself nutritiously I might just keep showing up long after I've recovered! My other brother lives just 5 minutes across town. My dad's 12 year old prostate cancer moved to his brain early this year, and he moved himself into a long-term care facility right before his surgery. He's been quite cognitively affected by the tumour and the surgery/radiation so I'm glad he made that decision for himself and there is no way on earth he'd be able to live on his own. My mom passed two years ago after a very brief (three month) tangle with pancreatic cancer.

I was diagnosed with my cancer on my birthday this year. I'd felt a lump for maybe the previous six months but hadn't paid much attention and only remembered to ask my doctor to take a feel for it as I was leaving a regular appointment in June. After that it was mammogram, biopsy, and all the rest.

Here's the thing that's interesting about my diagnosis though. In March of 2013 I suddenly developed hives. Really bad hives. There was a lot of stress at the time: it was the anniversary of my mom's death, my job was being off-shored and so I was shifted to a new department with new responsibilities; I had just put my dog down, and I had a run-in with a co-worker who lost her job in the shuffle and was angry at me that I had managed to stay employed. I took anti-histamines but they had no effect. I had to travel out of town to train for my new job and got very sick at the same time so was just getting by by dousing myself with OTC cold meds. The hives were really debilitating though - painful and moving to new areas of my body every day.

When I got back to town I went to my doctor who tried all the usual things to no avail -- went to allergists, had biopsies of my skin and was finally just put on high doses of prednisone. Stayed on Prednisone for the next year. Any time I tried to wean down too far I would break out just as badly, and sometimes even on the Prednisone. if I worked out too hard I'd break out anyway (when I did, I was unrecognisable, I was so swollen). Gained lots of weight on the Pred. of course. Eventually the diagnosis was just chronic idiopathic urticaria - meaning - everyone was baffled. From my reading, it could disappear overnight, or it could hang on for years, or hang on for life - no way of knowing.

Then came this year and the lump in my breast. Once we knew that chemo would be part of program, my doctor was anxious to try to at least wean me down off the Prednisone. I started again right after my lumpectomy and was a little shocked that with the trauma to my body the surgery caused I didn't immediately have another outbreak of hives. I kept taking it down a mg at a time - and within two weeks of my first surgery I was off the Prednisone completely. It was as if once the tumour was removed, so too was the cause of the hives. I haven't had a single hive since (though I still get nervous every time I get an itch anywhere!).

Every doctor and nurse I've talked to through this whole process has been fascinated by the correlation, and unfortunately it's not something that can be proven, but everybody seems to agree that somehow the hives were triggered by the growth (or appearance) of the tumour. I sort of had a feeling for most of the last year that even though it seemed completely random, that my body was trying to tell me something. Unfortunately, neither I nor my doctor could ever figure out what it meant.

Anyways, because of the Prednisone, and now the chemo, I'm working on my 2nd year without a working immune system, but I've been surprisingly healthy so far. Actually, other than the SE from the chemo, I feel better now than I have since late 2012. That's definitely making this treatment a lot easier for me to take. At least this feels like it has an end date after which I know I'll start to feel even better.

Thanks for listening - sorry for the novel! I had a brief spurt of energy, I guess!

seagirl · November 2014

Hi everyone,

I'm just checking in. I had my first round on Thursday and just had a little stomach trouble that night. Yesterday I felt pretty good, just a little sluggish. But today, day 3, I am TIRED I haven't wanted to do anything. I am giving myself Neupogen injections --not easy for me--- .I'm worried about doing it correctly. is anyone else doing them? does it get easier? I'm hoping that tomorrow will be better and I will have energy for work on Monday & Tuesday. I am so thankful for this board, it helps to know what others are experiencing. Dee4c I love your hat with the hair piece. I am getting anxious to get head coverings before I start losing my hair. I live in L.A. so don't usually wear hats in the winter, but I guess I will have a new style this year!

wishing everyone well

Charlottesmommy · November 2014

Hello again.

I went shopping for my new foobs, bras and wig yesterday. When I tried on one of the caps, I freaked a bit. I really couldn't handle that part. I really looked like I had already lost my hair. I guess I had myself all psyched for the bigger stuff, but the cap looked too real? Anyway, I'm a little overwhelmed, thnks for listening, and thanks for sharing to make this a little less scary.

MidLifeCrisis · November 2014

LucyShoe ... welcome and I can completely relate to some of what your saying. The year previous to my diagnosis was full odd and random issues that brought me in to see doctors. I just turned 40 this year and prior to 2013 I could probably count how many times I've seen a doctor in my adult life (asside from routine "maintainance") on one hand. In that year, I was seen at least double that! Now, I didn't have anything chronic (at least that was diagnosed) but one mysterious troubling symptom has since disappeared (also post- surgery). Either way, I firmly believe it was my body trying to tell me something was wrong - i was just seemingly sent on a wild goose chase to figure it out.

On a seperate note, I saw a woman out rocking the bald head today and so badly wanted to say how great she looked and start asking questions. I couldn't get up the nerve, but it made me wonder if I'll be able to just embrace the bald and move on w/life or cringe and hide from society. I actually think the bald stage might be ok, knowing it will be"short" term. It's the hair growing-out stages that I think will be more bothersome for me. Bald is one thing, but short, unmanageable hair at odd lengths seems worse and it will take a long time to reach a workable length. Any Nov. folks starting to lose hair? How is it going? I was treated on 11/11 and so far so good, but I just realized it's been about a week since I shaved under my arms and there's barely any regrowth (mind you, I usually have to shave daily in the summer or at least a few times a week for my own preference)!! Is this the start??! More then anything I dislike the fact that I might lose eyebrows & lashes. Really fear them not coming back ... and mine are very long/dark!

Trying to keep things in perspective though. It's great reading everyones updates. I guess I will be enjoying this board more than I expected. Definatelynice *talking* with people going thru it *with* me.

Jumpship · November 2014

Dee4C-Okay, the hat/hair combo looks cool but I have to say that sweater looks great! You had the big "m" and reconstruction? They look perfect! I feel ilke my reconstructions are coming out the side and make me look flat chested even though a C would be too small. I'm jealous!

LucyShoe-I had a tooth that bothered me. Dentist didn't really know why. Didn't appear to need a root canal but if the pain didn't go away they would need to. Guess what? Post 'm' surgery no pain! First I thought it was percocet and my fav fetanyal but after the pain meds went away the tooth ache wasn't there. So so.

Today ends Day 2. Appetite back. Port healing. All chairs but the recliner hurt. Hoping tomorrow and Monday are okay. I've got two at home with colds. From what I understand Thanksgiving to Sunday will be my immune compromising events. We were to go to my sister's house. 12 of us. However her husband has prostate cancer and so he invited his 12 family (who are known to bring kids with fevers and vomiting to family functions). Normally not a problem, but we are bowing out. My husband's family and mine all live within 15 minutes of each other and we live 2 hours away. I hate to go down to see my mom and his mom but not the rest of the family but I've got 3 kids of my own and a working husband and two jobs. I've got to cut down my risks. Thanks for listening!

Janiner · November 2014

Seagirl. You and I are on the same path. Day 3 for me and neuprin shot. That first shot takes some gumption. No se though. no nausea either. Will try to skip those meds tomorrow unless needed. My head isn't think very straight. Don't know if its the chemo or the meds. I'm sure injections are fine. Just wipe stab and done. I used the belly fat today. Hang in there. I just try to remember that some diabetics deal with this daily

Liwi · November 2014

I started losing my hair big time about 3 weeks after my first AC infusion which was 10/23. I'd cut it real short about a week prior which made it easier, also had found a wig I liked and brought it with when my friend and stylist buzzed any remaining off last Monday. Now alternating with the full wig, a hat wig and various head coverings.

DeeC4 your hat wig looks great !

One pleasant surprise is number of compliments I've had from some acquaintances who don't know about my cancer or treatment on my new hairdo when wearing the full wig. The one i got is a bit shorter, more layered and slightly different highlights than my most recent style.

Still have eyebrows and lashes.

Sending good wishes to all.

bonnied · November 2014

Hey ladies, I think we all need name tags to keep each other straight! lol I love the headwear pix and new shaved and cut hairstyles on everyone! I still have time yet and all of you have started your chemo journey by now.

I was wondering about the dry nose issues, so will put saline spray on my chemo bag shopping list too and some tylenol (think i'm outta that and only have T3 in the house.) Have anyone had pain post port surgery when bending down? My port surgery was wednesday and I have had some pain when bending down the last two days. Makes me feel kind of old if you know what i mean. Kind of bummed.

The past two weeks I decided to go on a house purge and have been working on areas, cleaning them out, donating stuff, chucking stuff, and dusting! (cough cough). Need to let the dust settle before chemo begins so thought I'd better get off my butt and work those areas.

I signed in to the December group too since they are all starting the first week. I love this group and feel like I am getting to know you all.

Have a nice Sunday.

xoxo

Bonnie

thrifty1 · November 2014

Gomokd afternoon friends! Last night was kinda rough. Day 3. Really nausea, irritable and tired. Today feeling tired still trying to push my way through minor house chores to keep active. Makes me feel productive. I'm thinking of keeping low key too through holidays with immune down. Going to try and work some tomorrow. Didn't make it to church today I wil post more later phone is acting up.

TallyLassie · November 2014

Hi all! Love the posts, so much going on! I went wig shopping yesterday and thanks to my sister and a friend I found one that I think I can learn to like. I thought I'd want something wild and fun, or at least the long hair I was never able to grow, but one that more resembled my "natural" (ha) color felt best. After my stylist trims it, I hope I like it more. I wore it to lunch and felt funny but so thankful to have the moral support. amylsp, I love your turban and just ordered a similar one online through Amazon (hats with a heart 3 seam turban). I already have a nightcap for the fallout. Dee4c, you look great, and isn't it nice to know you have something just in case? Good luck finding the right one, or whatever works for you.

MidLifeCrisis · November 2014

Why do people chew on ice during an infusion? I heard about the cold caps (for hair) and icing fingers/toes (I did neither), but I keep hearing about ice chips, too. What's the purpose?

Dee4C · November 2014

Hey all, loving all the pics, so nice to put a face to the names. Thanks for encouraging words on my hat hair!! Charlottesmommy, totally understand what u mean about the wig cap. They put a flesh colored one on and the first time is the freakiest. Then u kinda get used to it, but still don't like it!

Minivan, thanks for liking my boobs, lol. I do have to give props to my PS. I had treated myself to breast implants for my 40th bday cuz I was sick of being AAs. Well BC had other plans for me sadly. But I will say that he did such a good job that in a bra, you can't even tell I had a double mast. Unfortunately, I need radiation so I don't know what he will be able to do with them after that. Hoping for the best outcome so I don't need a constant reminder of this nightmare. Sorry to hear about your Thanksgiving plans, but u have to do what's best for u, bummer though

Tallylassie, you look great in your wig! I get what you mean about being comfortable in it. Likely most people wouldn't notice when we wear wigs, but I feel like I may be paranoid, at least for a while. It's so important to find something you feel confident in.

Liwi, it's so nice that u are getting compliments on your wig! I'm sure that brings you a nice boost of confidence

Sheena, sorry to hear u are not feeling well. Hope it passes soon and you can get some relief.

Seagirl, good luck with those injections. I haven't done these, but had to give myself stomach injections when I was going thru infertility treatments. Hurts just for a sec, they aren't bad, assuming it is a similar sort of shot. As long as the medicine gets in, you are probably doing it right

Lucyshoe, thanks for sharing your story. Sounds like you have a great local support system and you have all of us too! So sorry to hear about your dad and the passing of your mom. Hope you find some comfort and lots of moral support on this board.

Wishing everyone a peaceful night!

Dee

enlm20Erica · November 2014

MidLife, I was told that ice helps to keep chemo from affecting your taste buds and helps to avoid the metal taste. I did it and so far my taste buds haven't been alerted and no metal taste.

Dee4C · November 2014

Midlife, I think the ice is supposed to help eliminate a metal taste and/or help with preventing sores. Plus it's probably soothing and when it melts, you are getting hydrated! I made a bunch of ice chips and put them in a Baggie to bring to my 1st infusion tomorrow so I hope it does something

Mrshq1 · November 2014

Good evening all. Today is day 7 and all is well. Was able to run/walk 2 miles today. I am on day 3 of 12 hour midnight shifts this weekend and surprisingly have made it through it all. My stomach has been upset and my neck is slightly sore but otherwise all well. Guessing taking the B6 and the L-Glutamine helped. I am taking Allegra daily and Prilosec daily and applying tree tea oil on the nails. Keep wondering if I am just lucky, or is it still early and I am in for a real wakeup call soon. Regardless, I love your pictures and upbeat attitudes. Hugs from Orlando.

Leslienva · November 2014

Doyou keep the ice in your mouth the entire time or just off and on? I had that terrible metallic taste in my mouth up until lastweek.

cc3373 · November 2014

I just kept tall cup of ice and filled with water kept drinking it.

MidLifeCrisis · November 2014

thx, I will try the ice chips next time. The metal taste didn't start right away but it became awful! My own saliva tasted like it ... plain water was almost worse. I need to find a better drink solution because I got to the point where I couldn't even drink water but nothing else tasted good (tried cranberry juice, ginger ale, coffee, tea...)! Have been relieved, though, that it has mostly gone and taste has mostly come back now around day 13 from 1st treatment.

Liwi · November 2014

I have a question. Are any of you doing chemo prior to surgery? That is my treatment plan to shrink the tumor prior to surgery. KnittingPT I think you are also doing this but don't think I have seen anyone else

Kimberli43 · November 2014

Hi Ladies! I'm starting chemo tomorrow 11/24. It is the first of six treatments over 18 weeks. I've been reading all of your posts and am so thankful for the advice. I'm starting to freak out about how I'm going to feel and what side effects will affect me. I guess I'll know soon enough.

A question about the Claritin...when do you take it? I get the nuelesta shot on Tuesday.

I live in San Diego but grew up in Florida. I am married to a very supportive husband and have a 3 year old son. I went to ungrad at FSU...so I also remain a Seminole.

I look forward to getting to know everyone while we take this crazy journey together.

Kimberli

enlm20Erica · November 2014

well wishes to those starting chemo tomorrow. I go for my 1 week post chemo check up tomorrow my oncologist wants to see how I reacted to everything. Tho I wish I didn't have to deal with any of this it wasn't as bad as I expected. Drinking plenty of water the days before and ALOT of ice during my first infusion I belive was the key to low side effects and of course the nausea meds! I took my nausea meds a few hours after infusion before I got nauseated and stayed on schedule with them for the first maybe 4/5 days and thankfully never felt any nausea! The only thing I couldn't shake was occasional fatigue but I'll take that! I must say at this point I'm tired of water lol and must also find something else to drink. Was drinking V8 Slash carrot pineapple juice today it was good just a little heavy to drink everyday all day For me. Oh the big D did show his face yesterday and today, I took one cap of kaopectate and all was well. Hoping today is a good day for all wherever you are in treatment, beginning, middle, nearing the end. (((Hugs)))

amylsp · November 2014

Morning Ladies. Unfortunately I spent 6 hours in the emergency room yesterday! My heartburn has been bad this time around, so I guess I have not been eating and drinking as well as I should. I drove to the hospital yesterday morning for my Nulasta shot and felt Ok. When I sat down to eat some lunch though, the heartburn got really intense. I tried all my usual cures and nothing was working. So I decided to take a shower, thinking it would make me feel better. That was a big mistake. My son was at his friend's house and my husband was grocery shopping. I wasn't in the shower for more than five minutes when it felt like I was going to pass out. I barely got myself out of the shower and had to lie on the floor because my legs were so weak. I was finally able to get myself up and walk to the bedroom to call my husband and the last thing I remember is picking up the phone. Next thing I know, I wake up on the floor. I apparently smacked my head and chin good and hard on either the dresser or the wooden rocking chair in the process, but I don't remember anything.

I was able to call my husband on the phone and get him home. and we called my oncology emergency number. My MO was the doctor on call, and he said I was probably badly dehydrated and being in the hot steamy shower lowered my blood pressure enough to cause me to black out. I had to go to the emergency room for a CT scan and blood work to make sure my head and blood levels were OK. Everything looked good and I got sent home last night, with just a mild headache and a good sized contusion on my forehead and chin. I did find some time to laugh though. When I went to the bathroom at one point while at the hospital, I got quite the scare when I looked in the mirror. Between the buzzed cut head with massive bald spots, contusions and abrasions on my face and head, and a bright yellow face mask, I was quite the sight!

Hoping the heartburn doesn't get bad today. It's currently lurking in the background. Waiting for my gastroenterologist's office to open to see if she has any good suggestions.

Hoping to get some good, well needed rest today! Hope everyone is doing well.

thatcameragirl · November 2014

amylsp, that is so scary! Glad you are okay.

I am feeling better now on day 6, feel pretty much like my normal self. I'm planning on going Christmas shopping today. My mom helped me plan out our shopping and packing days since I'm going to Ohio for a week at Christmas and the whole thing had me a bit stressed.

So I have a question about hair falling out because I was at the beach yesterday and it was so windy I was paranoid my hair was going to start blowing off! Are there warning signs before it happens? Should I be taking a hat with me places in case it decides to start falling out? These questions sound ridiculous but I am really worried about it! So far my hair is totally normal but I'm guessing in a few days it will happen?

Thanks for being there for me! I'm so glad I have people I can ask about this stuff!

November 2014 Starting Chemo Crew

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