Anyone.Starting Chemo in October 2016?

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  • Teach1st
    Teach1st Member Posts: 1
    edited October 2016

    Al12 I'm further along in treatment (same chemo regimen) but I thought I'd throw in my two cents on the hair. I had long hair, long beautiful hair that I loved...I knew this would be one of the hardest things for me. I'd never had short hair. I cut it to a bob before I started chemo (looked just like my mom), then to a pixie one week after 1st chemo (looked just like my aunt!). 3 days after 2nd chemo, it started coming out in clumps so I had it cut as short as possible (because none of my head coverings had arrived yet in the mail!). As soon as my scarves came, I had my head shaved. I patiently waited 2 weeks for the stubble to fall out but it didn't. I took a razor to it. At first I freaked out and was afraid I was going to cut myself. Then I calmed down and said to my self, "Self...you have been shaving your legs since you were 10 years old, you can do this!" I stepped in the shower and took care of it all without a single cut. I ran around the house without a covering, but didn't leave without something. I was certain no one wanted to see my bald head. It took me 2.5 months to go out without something on my head and I actually feel less self conscious now. I'm a teacher and decided to use it as a character lesson for my kiddos. They got to the point that they didn't even notice if I had something covering my head or not. I'm almost 2 months post my last dose of Taxol and my hair is coming back. It's a great talking point and helps me share my story with others (my 7cm tumor didn't show on my first mammogram...). I hope your side effects stay minimal!

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  • Julesbabe55
    Julesbabe55 Member Posts: 39
    edited October 2016

    Hi everyone!!

    I have been reading all the posts - they are coming fast and furious. And while I haven't responded in a while, I want you to know that I am inspired by all of you and how you are each handling this journey - putting one foot in front of the other and carrying on as we must. I had my second infusion this past Tuesday - it went well - I ate frozen grapes during the time and they were so yummy I am going to do it again next go round. I think the last time I posted, I was concerned about a spike in my sugar from my blood test. Discussed it with my onc and she advised me to schedule some time with my primary doctor to see if he wants to do any additional testing - apparently chemo can screw around with your sugar tolerance. Will need to figure out when to schedule that as next Tuesday will be my low blood count day so want to avoid going out that day. Had my Neulasta shot yesterday and the Claritin still seems to be doing the job for which I am grateful. This morning I didn't exactly feel queasy but I took one of the anti- nausea meds just as a precaution - I can deal with the big "D" but hugging the porcelain throne is something I absolutely cannot handle and my heart goes out to all of you that are dealing with that. So far, so good.

    Food is still tasting good - my husband made split pea soup last night - it was so good and I didn't have to cook which was even better!

    My hair is thinning but I refuse to completely shave it off. I guess some part of me is hoping it all doesn't disappear so trying to hold onto whatever I have left. We'll see if this resolve continues to hold out over the next weeks. I have started to sleep with a cap on at night and on occasion wear something on my head in the house because damn it's cold without a head of hair to keep you warm!! This too shall pass for all of us.

    Love to you all!

    Julianne

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Teach1st-

    Welcome to BCO, and thank you so much for sharing your experiences and perspective!

    The Mods

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  • Al12
    Al12 Member Posts: 79
    edited October 2016

    Teach1st, that is an amazing story! thank you for sharing. I so badly want to shave my head but I'm afraid I will cut my self. now after reading what you did I think I will do that tomorrow or I will try. maybe one day I will go out side with my bald head it must feel so liberating. I walk around the house in front of kids with out the head wrap now and they are very cool about it and they tell me how beautiful I am. I took a picture with my husband after he buzzed my hair even more after the first buzz and I showed it to my co workers and I let my husband put it on his blog but I'm not ready to walk out on the street like that yet.

    Julianne, so glad everything is going well so far. I def feel like losing the hair thing is worse then the side effects. wishing you an easy transition

    xoxo Alla

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  • GrendelDog
    GrendelDog Member Posts: 22
    edited October 2016

    Hi everyone! Like all the others, I've loved reading everyone's ramblings, ideas, worries, statuses, etc! Thank you to all of you for all your posts. For the lurkers out here like me, they are great!

    Finishing up the first week after 2nd infusion. No vomiting this time around - YAY!!! (I think the vomiting last time was egged on by a budding migraine, but who knows). I haven't had the energy this week that I had during week one of the 1st infusion. That's disappointing. And I've seen several people posting about the chemo-brain/fogginess issues - Yup, for the first 4 days after the infusions, I am very foggy, and I have to concentrate even to write. It's very weird - I have to concentrate to make my fingers control the pen properly. Fortunately, it seems to go away by day 4-5 for me. Since my infusions are on Fridays, my worst days are on the weekend so I'm not TOO stupid at work. And my body can't quite decide if I should stop eating or eat LOTS ... something is urging me to eat, eat, eat, but my stomach is not really sure. My body is very confused!

    Tonight and tomorrow are the day 7/8 days where I had such bad back spasms last time - ostensibly from the Neulasta. Hopefully, I won't have the same issues, or if I do, they are more minor. I'm not taking the Claritin, just 'cuz I'm tired of taking extra pills! Last time, Tylenol did a great job on the spasms (short term, but better than nothing), and a heating pad was helpful. If I can manage it that way this time again, then I won't bother trying the Claritin.

    Buzzed the hair last week - it was fun and weird, but you have to laugh at this stuff. And I keep getting surprised by my sparsely fuzzy head in the mirror! I thought I would be freezing at night, but I've been getting such hot flashes at night, that the shaved head is a cooling bonus!!

    I've had fun using the Wrapunzel videos for scarves, and feel so chic with the turbans! Almost too chic for our office - but my wig has arrived, too, so I have a couple of options. A cute little bob -- straight hair - I always wanted straight hair! And so far, my eyebrows and eyelashes are holding on strong!!!! YES!

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  • Ella22
    Ella22 Member Posts: 39
    edited October 2016

    Alla-Love the shirt you look great!

    Jennifer- Hugs! For #2

    B2alicia- hope your SE are easing!

    Miles-I agree Barb does seem to be a writer .

    Fighting the fight-It is so true that I will also try to never take for granted a day where I feel normal!

    Bock- I too had a knock down about 24 hrs after Neulasta shot! It lasted about 4 days. Hope my second treatment is not the same!

    Teach1st- I also took frozen grapes and ate while taking chemo. I was a nice treat!

    Loved my morning walk right before the sun comes up! Today felt normal..


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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited October 2016

    Miles and Ella - I am not a writer, just someone who loves language and playing with words. Your kind words gave me such a warm glow of pleasure ... you made my day!!

    I find my writing flows when it feels important, and all of you sisters have become so important to me ... you are my lifelines, whether I'm writing to you or reflecting upon your thoughts. I don't know what I'd do without you!!

    Have a nice evening.

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  • chickdudefood
    chickdudefood Member Posts: 51
    edited October 2016

    Hi all,

    I haven't gotten around yet (still in week 1) to shaving my head, but I live in a house with two guys who remove their nearly nonexistent hair with a little roller razor that comes from Walgreens. It seems to keep them free of nicks and I must say they wear their bald heads with great style. Lucky me, I get to borrow kerchiefs and hats from them if I need to...(washed, of course.)

    I am tempted to go out and get it cut short on the next non-rainy day we have here in Boston--but it's been really raw and wet for a few days and I'm staying in unless it's really urgent to get something done. Maybe someday next week when I have appointments anyway. I'm looking forward to a quiet weekend after what seems like pretty daily visits to the hospital for one thing or another.

    Love, to all,

    Kate


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  • FightingTheFight
    FightingTheFight Member Posts: 75
    edited October 2016

    My Sea Bands and Tummy Drops came in the mail today and I couldn't wait to try them out! And to my immense gratification, both are helping to eliminate my queasiness. I wish I hadn't waited to buy them. I also just realized how many "compensating" behaviors I'd started doing, now that I can drop some of them. For example, walking much more slowly and cautiously to avoid jostling my stomach, drinking water in very slow, cautious sips (making sure each little bit was hitting my stomach ok).

    After feeling filled past the brim with chemo drugs, it feels good to use a natural alternative. Rather than needing to add drugs on top of drugs. I'm not saying I won't use the nausea meds in the future, but it's nice to have an alternative. Because before being diagnosed and starting treatment, I was not a fan of taking medicine, at all. So being so dependent on it has been hard (though I'm of course grateful they're available). And it feels weirdly empowering to find something I can do or use to help myself naturally. I think I'm going to research natural, complementary medicine.

    Btw, ditto to all the people talking about chemo brain fog. Days 4-6 after infusion #2, the fogginess seemed to hit me hard. But right now (with the queasiness mostly subsided) I feel about 75% normal, which is great! I'll take mostly normal. :)

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    More in another note, but I wanted to share that I received a lovely gift bag from The Gracie Foundation. (Apologies for the flash glare.) You can learn about Gracie & get a bag via this site:

    http://www.thegraciefoundationinc.org/

    Lynimage

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  • Connie1230
    Connie1230 Member Posts: 192
    edited October 2016

    I'm glad to see others mention the chemo fog. I have had a bit of that too. It's driving me nuts. I think it's worse when I'm really tired. I am trying not to give into all of this too much and walking at least twice a day. I also spend entirely too much time worrying about how the side effects will be next time. I haven't had Neulasta pain yet this time either but if it's like the last one, it won't come until Tues. or Wed. Wed. was the day last time. I had a backache for 3 days but Wed. was the worst.

    I so admire those of you who go out without head coverings. I haven't stepped foot outside without my wig. I'm not wearing anything in the house but keep a little hat right by my chair.

    I'm reading everything and think of you all frequently but don't have the concentration to address everyone individually.

    BTW, I have one swollen ankle and foot...but mostly the ankle. The other might be slightly but one is more noticeable. I haven't done anything to cause it that I know of. I noticed it yesterday but it was better this morning. Now it's just as bad if not worse again. Is this a side effect or just me?

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    Welcome to the club no one wants to join, Rebeccam!

    Thank you for asking about me. I'll share a bit below this note. I'm not very familiar with the Onco test scores. My cancer is triple negative so chemo is pretty much a given, often even for Stage I. Have you sought a couple of opinions or do you feel confident that you have any facts that you need already? Please let us know what you decide and, if we can be of help, ask away!

    Lyn

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    I did my best Titanic imitation yesterday & discovered that I need to develop a new skill...how to get up off the floor in public gracefully when you have bad knees, a herniated disc & a wonky hip. Tuesday was AC Chemo #2. After two days of moderate to fairly nasty nausea, I felt perky yesterday afternoon & had a bit of cabin fever so decided to do a quick grocery run. Unfortunately, I underestimated the impact of eating little & chemo dropping my blood pressure significantly the past few weeks.

    Rather than fall down & knock my noggin, I carefully laid down in the freezer aisle at Target. A nice lady stopped to check on me & a kind employee brought me a cold Coke & hung out while I recovered enough to check out. SO-O-O-O embarrassing! I kinda felt like there should be dramatic music & my hand should have been delicately raised to my fevered brow as I slid down, but, nope, I just melted down more like the Wicked Witch in "The Wizard of Oz." :-D Just another bump in the cancering road.

    Today is Day #17. I ran a lint roller over my head last night & was surprised that there was little hair, but I'm sure that's just around the corner. I guess I could have held onto my hair longer, but it was an unkempt mess & I couldn't see paying to get it cut when I knew I would get it shaved soon. I was surprised that I didn't find the buzz cut more traumatic. Maybe it helps that I haven't had good hair for years & have relied on a comb-over to cover thinning areas. I'm including a 70s flashback in fond memory of my long, sun bleached tresses.

    Lyn

    image

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    Connie, I share your disappointment on how much the port protrudes. Is yours a Power Port & are other brands as pokey-outie? I saw a t-shirt "scarf" on YouTube that was cute, but no size noted there either.

    Al12, aw-w-w, it's not surprising that you'd break down in front of co-workers, but I hate blubbering in front of people, even when I know they care about me & are empathetic. Re: being a grumpy britches, I'm having spells of that as well and feel bad for the dogs when they want to play and I just growl, "Go away & leave me alone for 10 minutes while I fume & feel sorry for myself, please!"

    Char, sorry to hear that the side effects are ramping up with Taxol #3. Taxol is a coming attraction for me. 8-p

    Kate, what a shame to miss your yoga retreat. I understand about regretting not doing the BMX from the beginning. I wish I could unring the bell on having my seroma drained given that it only provided relief for a day & introduced an infection that delayed my treatment for two months and resulted in weeks on antibiotics. We can only do our best with the information we have at the time, but it's hard not to second guess our decisions. Ooops on the Neulasta pod. I'd totally forgotten about mine, then realized, "Ohmigosh, shouldn't that have gone off?," but luckily it was clicking away. OK, I couldn't tell anyone but you guys, but the nurse had placed it right below my swollen to about an H cup surgicized breast & the poor little pod was smothered in bosom so I didn't hear it. On a more serious note, it sounds like your daughter is coping as well with the horrible BRCA stuff as she possibly can. I can't even imagine that worry at such a young age.

    FightingtheFight, YIKES on the fall! Were you hurt at all? I think the sensitivity to smells is normal, but that doesn't make it pleasant.

    DeeMendoza, I think we've all experienced that, "It's just a nightmare & everything will be alright when I wake up tomorrow" feeling. Sigh...

    Bock, Sorry to hear the SEs have hit you hard. Reading through other forums helped me know what to expect, but I feel like I've been quite lucky so far with the chemo.

    Jenn, it's good that you have a great rapport with your plastic surgeon!

    Barb,UGH on those blasted waves of nausea! At least the soothing, cool air sounds wonderful. We're looking at record highs in Texas. This is usually my favorite time of year here, but this 90 degree crap when it's almost November instead of the normal 75 degrees makes me cranky! Loved the line about, "Gracie has spoken." She happily snuffled me last night so think the drugs have dissipated.

    Apologies if I missed anyone. I'm trying to jot down notes in a cute journal I got at Ross Dress for Less. I agree that the scrolling up & down is beyond tedious & it's so frustrating to type a lengthy note & lose it just before submitting. I'm not good at it yet, but am trying to remember to Select All | Copy periodically just in case.

    Hoping your weekend isn't tricked up with side effects & that your tummies lets you enjoy some treats Monday,

    Lyn


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  • Connie1230
    Connie1230 Member Posts: 192
    edited October 2016

    Yes, it is a power port and I know it's a good thing but I hate it. But then, I guess we all hate everything about this. I have no idea what any other kinds are like and hope I never have to find out.

    As far as being grumpy bitches, I have been known to swear at the recordings trying to get me to vote lately....recordings mind you, not humans! Is that nuts or what? I am able to restrain myself so far to just hang up on the humans at least for the most part. There have been a few exceptions. I get more irritated with all the random people trying to sell me stuff on the phone. I don't think this is turning me into a nicer person. It is however entertaining my husband which is probably a good thing


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  • FightingTheFight
    FightingTheFight Member Posts: 75
    edited October 2016

    VLH - Thanks for checking how I'm doing. Fortunately, I didn't hurt myself when I fell down. I didn't even drop or spill the open bottle of water I was holding. I just got crazy dizzy, started wobbling and crashing back and forth between the counters in my kitchen, and then the next thing I know I'm on my back in the middle of the floor holding my left arm up and clutching a bottle of water. If I could have been video tapped at that moment, I probably looked like a drunk person at a club falling over, yet saving their expensive drink from spilling. At the time it happened, it was unnerving. It made me think about how at every appointment I would blithely answer 'no' when they always had to ask if I'd had a recent fall. I think I was cavalier about it b/c I'm still fairly young (32 years old) and couldn't imagine myself having a fall. As I've since learned, chemo will humble you about a lot of things you previously took for granted.

    Luckily, as I said, I wasn't injured and can look back on the event with a bit of humor. So I completely understand what happened to you in the grocery store. I hope myself to avoid any sudden encounters with the ground in public. But I'm glad you're ok and have a sense of humor about your experience. :)

    Btw, my sensitivity to smell has calmed down a lot, thankfully. But I think I developed an aversion to a Bath & Body Works lotion I love. I put some on while waiting to get my Nuelasta shot and the smell was just way too strong. In retrospect, I should have washed it off, but my hands were dry and it was the only lotion I had on me. But I instantly understood, why they caution people away from wearing cologne or perfumed stuff around chemo patients.

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    Connie, Grumpy BRITCHES, but if the B word fits...

    Fightingthefight, how weird that you held the bottle in position as you went down. I'm glad you weren't hurt. It does sound best to stick with unscented so you don't develop a negative association with favorite fragrances during this #!$@# chemo.

    Lyn

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  • b2alicia
    b2alicia Member Posts: 64
    edited October 2016

    Alla, love your shirt!

    Question about the nausea/diarrhea--

    Has anyone ever paged their MD to ask for anything stronger than the zofran, or the immodium? Today is Saturday, and I know they have a bunch of staff on call, but I still don't like the idea of it. My other thought is taking up my friend's offer for medical marijuana. It's legal here in Colorado for everything--medical, recreational, etc.

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  • Connie1230
    Connie1230 Member Posts: 192
    edited October 2016

    b2alicia, I'm the wrong one to answer because I really dislike calling in. However, if you're uncomfortable enough to even consider it, then do it. That's what being on call is all about, being there for patients who need it.

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  • chickdudefood
    chickdudefood Member Posts: 51
    edited October 2016

    b2alicia, I agree. Call them, that's what they're there for and I don't think it's a good idea to start self-medicating under any circumstances. These health care workers are so experienced and they want to help.
    Best,

    Kate


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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited October 2016

    Hi,

    So here is my question of the day ... has anyone been experiencing chest pain since chemo? In my case, not sharp pain, but a very uncomfortable squeezing sensation under my sternum and slightly to the left of it. I think it happens when I am over-exerting myself (but not doing anything major ... grocery shopping, or cleaning out a closet, etc.), and it goes away if I lie down and relax for a while. I know that adriamyacin causes heart damage, and am hoping that this is not one of the ways it presents.

    The other factor is that my MO told me to take dexamethasone for 5 days following chemo this time (vs 3 days last round) to try to curb my nausea. i took my last pills this morning. I can feel that the steroid really revs up my system and so this may also be related. I don't feel it's an emergency as I can control it by laying low ... but it is disturbing. I really don't want to go to emergency to get it checked out as the hospital is full of germs!!! I'll call my MO Monday and sort it out.

    But in the meantime, just wondered if anyone else was experiencing anything similar?

    Thx

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  • Ella22
    Ella22 Member Posts: 39
    edited October 2016

    b2alicia- I would absolutely call!

    Barb- My nurse at the chemo clinic told me that the neulasta shot can make you have pain in the bottom of your sternum. That the sternum has bone marrow and produces WBC & RBC too. Don't know if that's what you are experiencing or not.

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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited October 2016

    Ella,

    Thanks for your reply. Don't think that's my answer though, as I don't get neulasta (my treatments are every 3 weeks.)

    I took half of an Ativan a while ago and I'm feeling less jittery. I'll just sit on my hands until I can talk to my doc!

    Loopy

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  • Ella22
    Ella22 Member Posts: 39
    edited October 2016

    Barb- hugs

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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited October 2016

    Thanks, Ella. Right back at you!

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    Teach1st, great story about the kids' acceptance of your appearance.

    Barb, the only time my chest feels tight or full is during the actual infusion. Still a bit get my, but you might call an Urgent Care to see if they can do an EKG & check pulse, BP, etc. Most let you check in online so you can wait at home instead of a stressful ER. I hate calling doctors on the weekend, too, but it's part of their job description.

    Alla, great photo & the shirt reflects my feelings nicely!

    BA, no mouth sores although I have a weird taste. Not really metallic, but odd. Good job on the price reduction.

    Miles, being single definitely has its pros & cons, doesn't it?

    Jules, the MO skipped steroids completely for me this time to avoid blood sugar spikes, but gave me an Rx for a Sancuso patch & three oral meds. I am testing more often.

    GrendelDog, glad the tummy is better this time. Once mine settled, I was watching some episodes of "Pioneer Woman" and had to rewind a dozen times as my mind wandered. Fibromyalgia Brain Fog + Chemo Brain = Airhead

    Fightingthefight, thanks for mentioning the Sea Bands. I totally forgot that I'd bought a box & should have tried them on Days 1 & 2 when I felt lousy.

    Lyn

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  • GrendelDog
    GrendelDog Member Posts: 22
    edited October 2016

    Barb - I get something vaguely similar, but less intense. I wouldn't rate mine 'very uncomfortable' - more of noticeable sensation. I know we hate calling in on the weekends, but this might be a time to do so. If not, definitely call first thing Monday morning. Don't want to mess around with the heart! Good luck :)


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  • b2alicia
    b2alicia Member Posts: 64
    edited October 2016

    Abra, are you close to anywhere that can give you an ECG? I understand how you feel about picking up germs at the Emergency Center, but maybe if you pick up a mask as soon as you enter, and don't touch anything. I'm not a Dr, but I just always worry when anyone say they are having chest pain. And women's heart symptoms are so different from men's... Your whole visit could take an hour or less, and piece of mind is worth it. And I think I will worry about you.

    Or maybe just call your weekend dr number and see what they say. ***Hugs*** Betty

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  • Jacbowden
    Jacbowden Member Posts: 4
    edited October 2016

    Hi, first let me say sorry that we find ourselves in this position, but happy that we have lovely people to support us through this maze of chemical treatments. I was diagnosed in September and had a right breast mastectomy three weeks ago. My chemo begins on Monday week (7th). I'm attending an information session and fitting for a cold cap tomorrow.

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  • VLH
    VLH Member Posts: 1,258
    edited October 2016

    Welcome to the group, Jacbowden. What chemo protocol will you be having? Let us know how it goes Monday.

    Lyn

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