Starting Chemo, November 2013 Group
Comments
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the diflucaln ...just take hours from antacids....you can stagger it! also gaviscon or generic (cheaper) along w ratididine.....my phone chops
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ugh, this must be intestinal time for those on my schedule. Nastiest gas I've EVER had. Gasx, Prilosec, tums, pepsid. I figure whatever chemicals I add to my system are nothing compared to what the Dr put in me. Bad news, I broke a tooth or filling. I've got an appointment for next week for the dentist to try to glue something on it to hopefully get by until chemo is done. If it doesn't work what a hassle: antibiotics and having to time the work to be at the end of the 3 week . The good news is, I had my bone density test this morning and I've got lots of bone, so I have more options for my 5/10 years of drugs.
LOL, if we got together we would look like a lesbian group with our short hair! If one of us had a problem being mistaken for a dyke, that would be the time to roll out the pink ribbon t-shirts...
I've got nothing against Texas, I was just thinking cheap flights into Dallas from lots of places, minimal travel time, but sure, I'd prefer Paris. I'm an accountant, therefore I am practical. I can't help it.
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What do you mean lots of options for 5/10 years? do they decide on bone density? I haven't had that test....
I was just on our insurance site looking for something for one of our daughters, I saw my MO charges 10,000. for each chemo visit!!!!! OMG!!! I had NO idea!!! it really costs that much to poison us??
I am up for travelling anywhere and I'll bet we will look like lesbians!!!!
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Hey all
Feeling pretty good today other than a nasty ditch water taste in my mouth, mild queasiness, and occasional feeling almost like diarrhea coming on that never materializes.
@Paulette I chose double mastectomy on my own. Husband agreed, and surgeon didn't disagree or try to talk us out of it. Wasn't interested in going through any of that diagnostic process again any time soon if having a BMX could help us avoid it. For me the order is/will be surgery then chemo (now) then rads.
@lisacm - I work from home and kind of on my own schedule, but I don't mind admitting that I've done VERY little work during chemo. Actually, I've done very little work since my surgery in October. I've started to get back on track a little bit over the past few days. Personally I can't imagine working like Northwinds has done.... I think it depends on the person though, and on the chemo itself, and just on how well your body deals with it. Mine has mostly dealt with it by going to sleep and staying that way.
I get some...discomfort... in my BMX scar areas during the first few days after chemo, but it resolves fairly quickly. It's not like soreness or anything really, more like an awareness.... Other than that, the only thing I've noticed about the area lately is that the skin feels different somehow.
Paulette -- Yeah, sometimes I have a lot of excessive tearing. It drives me crazy. Then it dries up and seems to congeal on my eyes and makes them gooey. Can't blame it on taxotere since I've only done A/C thus far. It's annoying, anyway.
At last check my WBC and all its attending numbers were good, great even, but my hemoglobin was low. Hoping that wont' be any worse, at least, when I go for my final AC next week.
I have patchy very short stubbly hair here and there on my head. A few stragglers down south. Leg hair seems to be frozen: It hasn't fallen out but it's not growing either. I just ignore it. Brows are good, eyelashes were straggly to begin with, and the constant teariness/gunkiness hasn't helped them any. My poor husband, lol.
@PatAlameda what this stuff has done to my brain is actually my most despised side effect. Funny thing: Last week my husband and I met with my onc's Nurse Practitioner because the onc was out of town for the holiday. She's had breast cancer herself--though I don't know any details---so I was thinking she'd be interesting to talk to, but she said something to the effect that studies have shown that "chemo brain" isn't even a real thing, and that it's just stress. etc., etc.....and my husband and I just kind of looked at one another and didn't really discuss much with her after that because #1. From what we've read, studies are showing exactly the opposite, and #2., whether it's from the chemo or one of the other drugs they're giving me, it's a FACT that I'm a complete miserable idiot for several days right after chemo, and that I'm never quite as sharp as I was in my pre-chemo days. Not a real thing my ass. I'm expecting my husband to say something to the onc about it next week, or at least, it won't surprise me if he does. Anyway, YES I miss my brain, and I am also really getting tired of being stupid!!
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Hi~
I'm starting to feel like I'm the one person who won't find Taxol easier than AC. I know others are faring/fared worse than I did on AC, but this flu-like feeling is dragging on and on. I'm on day 8 and have gone from feeling really crappy to just crappy. I'm hoping a lot of it is from Neulasta and that I won't need it next time. If I had the energy, I'd be really cranky!
I can't recall who tossed out which questions, so I'll just jump right in.
I've had a bloody, runny nose for a few weeks. Actually, I have pretty bloody boogers (what's the grown-up term for them?) all day long. I coat a q-tip with Vaseline and shove it up my nose as far as I can take, but it doesn't help for long. My MO said to leave a pot of water simmering to moisten the air. I haven't done that, so I shouldn't complain.
Hair -- if I hadn't buzzed my hair to about 1/4", I could have rocked a great mohawk. I used to shave my legs only to my knees, and I haven't needed to for a couple months. Weird thing is the hair on my thighs is still there. My eyebrows, eyelashes and nether region hair are about 75% gone. My eyelashes and eyebrows have disappointed me for as long as I can remember, now I'm so sad to see them go.
I don't get a cancer marker test with my regular bloodwork. Should I? My WBC tanked after my very first AC, but it's been climbing back since then to 7.8. My ANC has also been going back up to 5.9, hemoglobin steadily decreasing to 10.8, and my platelets up and down but 185 at last count.
My surgeon didn't want to do chemo before surgery b/c he said it would work and shrink what's there, and then we wouldn't know what stage I really was. I guess that is good because before surgery, they thought I had 4-5 small IDC tumors and at least 2 lymph nodes; turns out I had one 4.8 ILC and 6 lymph nodes. I wanted a bilateral mastectomy anyway, so I'm glad I had everything removed. They explained it to me this way -- they put out the fire first (surgery) then do treatments starting with most general and working to most targeted.
As an aside, it looks to me like most of us on AC then Taxol have lymph nodes involved, right? Those of you doing Cytoxen and Taxotere have no or few lymph nodes involved, right?
Scars -- I guess mine feel sort of tight, but I'm used to it so I don't really notice it. I stretch everyday, many times a day. It's been three months, and I can say that I have full range of motion in both arms, but it's not as "loose" as before surgery. I still have a lot of numbness.
I got a bill for a copay today that I didn't pay at the appointment. Get this -- my lymphedema consultation was billed for $7225. She was a smart and helpful physical therapist, but really!
Paulette, your pics really cheered me up today!
I can't remember anything else to respond about, and I don't want to lose what I've typed by looking back a page. I'm sure there's another way to figure that out, but I can't think it up right now...blah!
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Hi Bec,
Are you doing weekly Taxol or every two weeks?
I have my last AC tomorrow then start weekly Taxol. I am praying the Taxol is easier than AC for me. Nurse said the weekly Taxol has easier side effects them the bi weekly. Hoping this to be true.......
Pam
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Hi Pam,
I'm doing dose dense every two weeks. My MO said the aches would likely be worse but neuropathy and nail issues not as bad (something about duration being less, so those SEs would be less). I felt great on day 2 (see my lengthy post of 12/27 -- I was like the energizer bunny with the double dose of Decadron). I totally crashed Saturday and Sunday with body aches and (what we call in our family) creepy crawly skin. It didn't help AT ALL that my hands were killing me with the hand/foot syndrome SE. I've expected things to be much better since then, just like I bounced back after the bad days of AC. It has been better than last weekend, but I can't seem to get any better than how you feel the day after your worst flu day. The worst is over, but it's still there. I definitely don't want to feel like this for the next 7 weeks, but what am I going to to do, eh? I chose this over weekly b/c I told my MO I'd rather suck it up for a shorter duration, especially if it meant less damage to my nerves and nails. And here I am!
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Hi again Pam,
Okay, that was all about me, wasn't it?!? I should have started by telling you that I've lurked on the October group's forum, and I think all of the ladies on Taxol there are having an easier time and have written MANY times that they'd take Taxol over AC anytime. DH has been wondering if I caught a bug of some kind and have been dealing with that too. It's probably just me; everyone IS different and I feel like I got off pretty easy with AC compared to what some of our friends are going through. As long as it's kill, kill, killing anything loitering in my system!
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Hi everyone! Been thinking about all of you every day! Doing more lurking and reading than posting. Trying to get beyond this horrible rut I am in. I admire so many of you that are moving beyond this awful petrified and depressed phase I am stuck in...you are inspirational to me.
Cannot remember all the details of so many posts but I want to say that any place, any time, any where...I AM IN FOR AN ALL-GIRLS GET TOGETHER! Would love to meet you all at some point in the near future. Willing to fly just about any place I can afford in the Continental USA or Canada-lololol!
Lots of snow here but I hardly noticed it as a nuisance this winter! Actually enjoying it but it is FRIGID COLD as well! Prepping for my 3rd T&C which is on Tuesday, January 7th, IF my pre-chemo check goes well on the 6th.
Regarding hair...I am totally bald at this point...cannot believe it...lost all my buzzed hair within 48 hours on day 19 or so following first chemotherapy cycle. More frightened about losing eyebrows and eyelashes than head hair.
Taxotere gives me TONS of GI symptoms...reflux, pain, indigestion, DIARRHEA, immediate nausea, etc. So, my M.O. has me on a triple-play of anti-acid kinda things...Pepto-Bismol, Zantac and Prilosec. All three act in different ways...on different GI receptor sites. Also on Compazine and Ativan for post-chemo nausea. Also taking a plethora of other meds for management of all types of symptoms related to chemo...about 16 in all!
Feel better everyone...
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A few photos, ladies for our amusement. I know I love looking at photos of your lives and all...makes me feel like I get to know you better!! Just feel like sharing the photos with you. No one except DH has seen the photos of me buzzed or bald. Trying to wrap my mind around all of this. Sparkle is gone from my eyes :0( but I feel so Blessed to have you all in my life!
Me the night I buzzed my head...a few days prior to chemotherapy #1 in late November
Night of head buzz after showering and entering p.j's that I wore to Tijuana when I was 80 lbs heavier
In a turban and out to dinner the other night...I look sooooo depressed
Totally bald and completely depressed. Photo taken after a post-shower crying spell but I'm rockin' some new pajamas!
Me and my wig, which I had to wear for new driver's license photo the other day :0(
Prior to undergoing bariatric surgery. Photo taken the night before I left for Tijuana...made this photo as horrific as possible @ 227 lbs
Beautiful winter sunset near my home that was taken the other day
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Bec65 -- I'm on TCx6 with stage IIIC IDC with node involvement at age 66, so I think the choice between TC and AC/T treatments is more complicated than just node status. Age, stage, tumor characteristics, nodes, etc were all mentioned when my MO was presenting options to me....
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thanks for sharing those photos to us Toni. I can identify how chemo slowly takes over even our complexion. I was crying the other day, my face is changing. After my long walk I didn't go for a walk. Due to tenderness on where I had the operation. I overdid it. I'm just going to take short walks.
Amazon: you ask how mastectomy was after an operation it's still very sensitive after four months. It is healing nicely. What I did was exercise slowly and gently I got a pamphlet to show me how to exercise it.
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Thanks for your input Becca! Any info is great to have! Crazy how we all differ in side effects with the same treatment. Hoping your next infusions are easier on you!
Tonilee, I like your wig! Wish there was something I could say to help you through this. I just keep reminding myself that this too shall pass. I live Wisconsin and think the cold has been adding to my down time. Look forward to this summer and warmth from the sun again. I think once we make it that far we will be able to have a more positive outlook and be feeling better.......
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Love the photos!!!!
Bec- I'm TC stage 1, no nodes.
Taxotere Gi was killing me tonight until I could finally release four days of toxic sludge. Just wretched.
On a brighter note. When I was lying inert in bed recovering, my DD started a henna tattoo on one side of my bald head. If there are no reactions tonight, she'll keep going. Love having a daughter artist!
Praying for all of you who may be suffering in any way tonight.
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Tonilee, your story and mine on TC just shows how differently everyone responds to the same drugs -- I've had completely minor GI SEs, but my muscles and joints just ache like crazy after each treatment. I am thankful that there are (usually) some good options for treating the SEs, especially the horrible nausea that almost everyone used to experience from the get-go.
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Tonilee, Yes this is hard. Yes your face shows how hard. So does mine. We will get past this. This entire thing is depressing, sometimes being sad is a reasonable response. Just know that we all care.
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Thank you, everyone for your kind kind words. How special it is to have a place where we can come & share...notice no one is saying, "Oh...c'mon now...you do not look that bad...it's gonna be alright...just buck up and get on with things, YOU LOOK GREAT, c'mon now, etc, etc."
Pat, bluegrass, Phebe, Pam, quirkygirl...all of your words touched my heart in a special way. You all mean so much to me.
bluegrass...as an aside, my MO declined the use of Adriamycin with me 'cause he felt "it would just be too hard for me to handle right now, given my family history of cardiac disease and all." I insisted but he persisted. It's exactly as you stated...given my case, the nodes, the stage and grade of my cancer, my Oncotype Score, etc...he strongly believed that "we would start with T&C...deal with Adriamycin if there is a recurrence in the future, etc." He simply would not do Adriamycin...felt T&C was the way to go for now. I am happy for you that your GI symptoms with Taxotere are few...sorry about the other symptoms...hoping they are manageable for you.
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here is a pic that I wear just practice wearing it. I found that because my head is sensitive I couldn't wear it long. I look like I'm stoned lol
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tonite......I agree the t is horrified.....my tummy. ..oh my tummy.....one more.....ekkkkkkks I think im gonna birth the alien!!!!!
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I lost my mind!!!!!! and I HAD HAIR!!! ITS TOTALLY GONE NOW!!! LOL!!!
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Phebe, I should have DH take a picture of me in my wig -- it's so demure and unlike my own messy pixie cut that it makes me look like the church lady on SLN (is she still there?) So I only wear it to church, mostly because my preferred soft caps look even weirder then the wig with my choir robe
I just love all the pictures -- happy or sad, they are a testament to our shared journey and friendships.
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I wish these tax tears would stop! I am making my EVERYTHING wet! lol! gotta laugh!!!! or ill really cry!
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phebe...I LIKE your photo of you wearing your wig! I think it looks GREAT on you...it looks so natural.
bluegrass...thank you for your kind supportive words...the photos are great, I love seeing them, too..."happy or sad, they are a testament to our shared journey and friendships"...so true...thank you. And I like your soft cap...the color of the one you are wearing in your profile picture is very pretty...and it looks great on you!
paulette...feel better tonite!
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this is my granddaughter and I. This was before I lost all my hair. I still have little bit of hair. I look like a baby duckling lol. Maybe one of these days I will go bald. My granddaughter decided to try on a scarf my daughter made
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this is my granddaughter and I. This was before I lost all my hair. I still have little bit of hair. I look like a baby duckling lol. Maybe one of these days I will go bald. My granddaughter decided to try on a scarf my daughter made
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ok here is my partly bald head. I don't like showing it to other people but you will be the first to see it.
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goodness.....tis àa bit chilly in Florida. ....high of 46.. its 42 now....not helping my headache cause sudden drop......burrrrr..I feel for you up north!....windy and chilly here! my head is gonna pop! ouch......
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pheobe love ur pic!!!!!
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good morning my WONDERFUL ladies!: huggs to all treatments this week! hoping to get some sleep on my side soon......tis very windy and chilly for floida today.32 low 48 high... I mwould like a hint of snow....unlikely here....just wind and chilly rain...i wish this headache will go soon and ill be able to eat between the tam tears....I love the snow pics. we have GREEN but chilly winds!!!!!
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