August 2015 Chemo Group
Comments
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Bunny, I'm glad you're on a new regimen & hope you'll be free of SEs!
Bluefrog, I love your photos--you as a cute fuzzy duckling & also your family picture.
Kate, so exciting that you'll be meeting the members of a band you love! My husband and I went to the 20th anniversary Foo Fighters show in D.C. on July 4th right before my surgery, and the event was transformative.
Musosgirl--hugs to you! Re: Paxil conflicting with Tamoxifen, I have similar concerns about having to stop Prozac when I start Femara. I have OCD and depression, both of which have been manageable for the past 20+ years with Prozac. I'm loath to start something new, but I know I'll need to. Please let me know if/when you find out what med you plan on starting next. I'll do the same for you.
RavenSally, I'm laughing so hard at the Linus photo--love it!
gooseberry, I'm sorry about your continued neuropathy. Have you been icing your hands and feet? I'm starting Taxotere next week & am worried about the SEs. I'm also unsure how to keep my hands and feet iced for 90 minutes without becoming unmanageably uncomfortable. I appreciate any advice from those of you who've iced already.
Rosieo, lots of hugs...glad to hear the port placement went well...you've got this!
DeeRatz, sorry about your not-friend. It's completely her, not you, and you deserve better.
Re: the SO question, I am fortunate to have an amazing husband who's been by my side for 27 years. I was 19 when we started dating & I've never failed to thank my lucky stars that I found him. I always felt life was too good & another shoe had to drop. On the one hand, I regularly took the time to be aware & appreciative of everything I had; on the other hand, the other shoe dropped.
My only complaint about my husband is that he makes what I call "cancer eyes" at me. It's a lovesick, sad, tortured expression that oozes love and concern and compassion, and he tries not to let everything show, but he wears his heart on his sleeve & it's all there on his face. Whenever he turns that look on me, I tell him to stop with the cancer eyes already.
Hugs to all of you & wishes for a restful weekend!
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@superius I did just see that. Sorry. As you can see I'm knee deep in the radiation debate.
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Molliefish: no problem. you said "debate", are you deciding on it?
Forgot one point, my MO said for me, the fatigue shouldn't get any worse. She also asked if I noticed any good vs bad days. I noticed that for round 2 but not quite sure round 3. But I think it's after day 4-5 when the side effect from infusion passed, then the fatigue set in... And I was losing weight at round 2, but gained them all back this round -- probably because I couldn't take walk as usual...
Thanks everyone talking about their s/o, I have learnt quite a bit. keep them coming! JenPam, I think I've seen that "cancer eye". Have to pay attention to that...
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Oh my, I slept in until 9:30 AM and missed my walking weather. But, I feel like a teenager again! I think I had chemo induced menopausal hot flashes during the night. My bald head was on fire, I had a headache, and I couldn't sleep. Then, hello 9:30.
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Here's a picture of my son and me (with my new wig). One of our other son's said, "Hey, someone got a new hair cut!" He hadn't seen me since I lost my hair on Day 30, so he was shocked that I was "so far along in my chemo." I was just thrilled they thought my wig looked real!
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@superius yes my husband and I have been discussing it. My tumour was small, margins clear, nodes clear, and due to the grade I am in chemo. Fortunately for me what appears to be the least disruptive of the regimens. But I have questioned from the first round, the benefits of radiation and the benefits of AI/Tamoxifen.
I was taken off guard by the MO who said I would take Tam but I think it's because he didn't know I am already post menopausal, 2 yr 3 month since my last period. All my blood tests indicate I'm well through it. He suggested 2-5 years of estrogen blockers followed by 5 years of AI. I'm not concerned about the SE of either as I already suffer from most of them, (hot flashes, vaginal dryness, lack of libido (my poor honey)) and because osteoporosis runs in my family I've always worked out and tried eat healthy.
I am not saying no to rads because there is such a great risk reduction for those who do not have chemo, but the stats are for those who have the same dx (T1N0, clear margins) the risk of recurrence without rads is 10-15 percent.
To me, that begs for a deeper more in depth look at my particular situation. The MO said that radiation will lower that risk in half so we're looking at 5 to 7.5 percent. But the risk is still there. If I take rads it will be whole breast, 15 +1 boost over three weeks, but I won't be able to have radiation again if I win the lottery again. ( 5 years ago I was dx with a benign brain tumour, odds of 1 in 1,000,000 of getting one, and now this cancer... they say bad things come in threes right?)
My Oncotype was 36 and without chemo I have a 25% chance of recurrence. With Chemo 7-10%. So with Tam alone I still had a 25% chance of recurrence.
So my husband and I say right now without radiation the odds are 90% that I won't have a recurrence. With rads that raises to 92.5 - 95 % .
BUT if I do have a recurrence there is a 100% chance I won't be able to have a lumptectomy and radiation, and the only option will be mastectomy and chemo again.
We also then consider the effects of the Tam and the AI without radiation. These hormone therapies are targeting the cancer receptors or the production of estrogen to prevent cancer cells from growing. If there were cancer cells left behind in the breast, and the chemo doesn't get them, one would suspect the systemic treatment of the hormone therapies would affect the whole body. The results for women who have been taking them are very good from the number of studies I've read.
I guess my problem is, at the end of it all, is do I sacrifice the 100% ability to use radiation in the future to gain that small percentage of benefit now? Like I said, I've hit the lottery twice. But I also have a couple of dear friends who have come forward to let me know they are cancer free after 20-22 years of lumpectomy, chemo and rads. Tough decisions.
Sorry for the ramble................ must be day two... getting metal mouth already but otherwise feeling pretty ok today.
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Sloan, it looks so good! I would never have known.
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molliefish - Thanks! It's better than my real hair!
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Sloan-your wig looks great!
Molliefish-thanks for sharing your radiation thoughts. I meet my RO on Monday so I am anxious to hear what he has to say. I had BMX so my radiation would be chest wall. I went aggressive with my surgery, hoping I could get away with just surgery and chemo to clean up any rouge cancer cells. I am glad I did go agressive with my surgery as they found 7 different cancer spots in my left breast. Although 3 were larger and the rest very small there were 7 foci. My margins were all clear and no node involvement. I had very dense and small breasts making it hard to detect the lumps. My friend who is a fellow lab tech was the one to do the dissection of my breasts post surgery and she said my case was one of the most complicated cases she has ever done. I want to slay the beast but will avoid rads if I can. Fingers crossed...0 -
@sloan - wig looks great! I am also having major night sweats. I wake up drenched. It seems to be worse around the time of chemo so am wondering if it's the chemo or the steroids or just everything rolled up into one. I am 50 so menopause on the near horizon. Maybe the chemo kicks it into high gear. All is know is I am a ball of sweat and fire. Wish it was in a good way. LOL
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Regarding radiation - there was some different opinions weighing in whether or not I need radiation. I sought several 2nd opinions. In the end, I decided to get radiation and the reasons that were given to me were 1 - my age.....I am fairly young to have breast cancer (50) and many of the studies are over a 10 -15 period time span and done with older patients. And 2 - I had 3/12 positive nodes which is a 25% of the sample. He felt that was high enough to warrant radiation.
A different dr. went straight to the protocol and it said "Mastectomy with lymph node involvement....Radiation strongly recommended".
I will be doing 25 sessions starting in November.
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Rosieo- sounds like you aced the port installation (now you're part Android lol!) You're tougher than you think.
Thankyou ladies for the radiation thoughts... I was worried about that process, but the hormone therapy spooks me more with the various drug's long list of possible SEs. Would having ovaries removed make it not necessary to take years of drugs?
LOVE the family and other nice pics. Having a loving partner by your side must be nice & i love your stories. Wish I had a significant other close by to be comforted and share with. Going through this without someone to lean on or just hug and be held is a VERY lonely sad thing. The one person on the whole friggin' planet who mattered to me is over 100 miles away, all my friends there too- I had to relocate to new home Port for treatments and looks like no moving back to the old port. Gee, thanks alot cancer. Going thru it alone sucks. No one to kiss goodnight:-( Thank goodness for an awesome mom and sister nearby at least...
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Birdsymom hang in there. It is a lonely old journey for sure without a S/O but there's usually someone around on social media. And don't forget sometimes these mood swings are the bl**dy steroids!
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lots of info on radiation! I didn't even need to go see a RO. Before surgery, my friend who works in radiology asked what kind of surgery I was having, I told, the kind that so I don't have to see you at work!" & she said, "Got it" But she said if I ended up needing it, she would have watch over the RO like a hawk.
Seems like the variation of treatments plan is determine by different factors like the kind of surg, margin, lymph mode involvement, ER/PR & HER2 status, or maybe also age & oncotype score?
Birdysmom The side effects my Oncology mentioned at our first appointments were quite different than the ones she mentioned last week, now that I've seen her few times & been going thru 3 sessions of Chemo. For example, at the beginning she mentioned Taxotere might bring on early onset menopause, last week she said my period probably would come back in couple of months. And she said some S/E are more specificic, i.e. if someone smokes or had history of clots etc, that increase the risk of stroke while on hormone therapy. So with my health & how I'm doing with the chemo, she mentioned the S/E I most likely MIGHT experience with hormone therapy.
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Hey Everyone,
Hi all,
I've been pretty quiet (almost non-existent?) on this page since the beginning. Too much going on I guess, including the fun chemo rollercoaster. I think I'm going to write a book, so sorry!
Just had my 43rd birthday last Wednesday and the biggest birthday present was my 3rd of 4 TC infusions on the same day. Yay! LOL At least hubby and a few friends stopped by to make it a lot more palatable to be there. Started with breakfast in bed from my kids (6yo daughter and almost 3yo son) and ended with barely passable Mexican food in my local suburb of Melbourne (good Mex food is really hard to come by for Americans living in Australia! We are always hunting and giving each other suggestions). All and all, I'm here, I've had a birthday, and hope to have decades more.
This weekend was pretty shit though with SE. My period decided to come back 2 days after my infusion, and is still lingering (was bad enough to need a tampon a few times! TMI?). I also had a pretty swollen neck and sore throat on Sat and Sun, still lingering halfway on Monday. I thought these were because I was laying down most of the time and bedsores, but looks like others have these as side effects. Don't like them! Someone mentioned, what I call, the flashing comic book, basically extremely vivid pictures/movies when you close your eyes, almost immediately. Really freaky! I give myself injections of Nivestim (5 small doses of Neulasta basically) and these give me horrendous bone pain. I mentioned it to my onc, and he just said to drink more water and walk more the days before. Ugh, didn't help. We can't get a lot of drugs OTC here like in the US that I see some of you using, so I have to suffer a bit (thankfully, Tylenol with codeine is OTC!). Do any of you have a massive spike in heartrate though? Mine goes from between 60 and 80 when resting, but then on the weekend after it races to between 95 and 115 at night, when I'm trying to sleep. L ARGH! And don't even get me going on the mood swings. It was bad enough having PMS on steroids, literally, last week and believe me, coming down has not been easy. I've been a blubbering fool today. LOL
I'm part of the fuzzy duckling group.
I have a wig, but have worn it once. I have been wearing Polly's Ponytails instead, which is amazing (look her up, pollysponytails.com--breast cancer sister who sews hair extensions onto headband--brilliant!). I've registered for a Look Good, Feel Better workshop at my treating hospital next week and am SOOO looking forward to going to it. I'm so happy they are international, because there are many orgs in the US we don't have access to (but there are some here in Oz you don't, so I guess it evens out).Oh, that cancer card has come out, sometimes too much. But when you are alone (aside from hubby and 2 little children) and the rest of your family are on two other continents (Europe and NA), it can be difficult dealing with day to day things. I can say thank God I am in Australia for my treatment, no getting insurance approval, no deductibles, no real forms for medical care. The one thing that just pisses me off is freaking American student loans. The $37k borrowed (1990-95) blew up to $85k when working in Poland (97-04 and couldn't pay).. Have been paying off regularly (9% interest) since 2004 and got them down to about $45k. Got bloody BC diagnosis in between jobs and the Student Loan lenders basically told me unless I die in the next 5 years, and an American doctors says I will, I have to keep paying. All because I don't live in the US. Yeah, um, that ain't happening. I went back and forth with them for a month until I gave up. I will never go back to the US to live long term (hubby can't legally live there and not willing to put the effort and pay the exorbitant fees and spend the lengthy time apart we'd have to spend to get him a green card) so decided, they can kiss my behind. They've gotten well over $60k from us, so more than I borrowed plus interest already. I live in Australia, and if we move to another country, it would be hubby's Switzerland or somewhere else in Europe. LOL
Speaking of hubby, he has been my rock. Many of my American friends and family have tried to get me to go "home" (uh, with no money, no healthcare, no husband) because I should stop my "Australian adventure" (as my so-called best friend calls it—who promised to come in August, but ooops, something came up) and go back to the US (been away 18 years). Having a mortgage, car payments, friends, breast cancer, children in school… yeah, that's an exciting adventure! LOL
Okay, I've rambled on WAY too much, but it's been a while, and just wanted to get it ALLLLL out there. LOL
I'm so grateful we are going through this together and get each other.
Peace out everyone.
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Hey AusUSA! My 21-year-old son studied at the University of Melbourne from February-June this year & loved it. At the same time, his twin sister was in New Zealand at Massey University. My husband and I wanted to visit both of them, but the trip out there is taxing (as you well know) and we decided to put it on our bucket list. Now that I have stage IIIC cancer, that bucket list is going to have to start being attended to sooner rather than later. Clearly we should have taken the time to visit Australia & NZ before my diagnosis.
Sorry to hear your SEs have been bad. Re: heart rate, I don't know what my rate is most of the time, but I get a racing heart feeling when I'm on Decadron. Other than that, things feel normal, so I'm assuming I'm fine and putting my head in the sand about it. Voila! All better.
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@AusUSA, thank you for telling your story! Vicarious enjoyment on two levels ... Not having to deal with insurance companies ... And having the delicious pleasure of telling the student loan vultures to go take a hike!
It's super late (3AM, sigh) but I just needed to check in and see how everyone's doing. It helps so much to know that I'm not alone, especially after this weekend where I told almost no one about my situation because I didn't want to be the "cancer person" at this event. As it turned out, the weekend was amazing. One of the only people there I knew, I only knew through a mutual friend, and we've now made a direct connection and will be seeing each other next week. She was one of the two people I told about the BC. The other was a woman who revealed in conversation that she's just been through chemotherapy, so I felt like she would understand.
Funny thing, I'd be just focused on the writing, or enjoying whatever event I was participating in or attending, and then I'd absentmindedly run my hand through my hair and a burst of itwould pop off my head and surprise me, and I'd think "Oh yeah, that ..." I tried to be surreptitious about sweeping it away if it was really obvious, like the one night after a nice dinner, listening to a reading, all white tablecloths and low lighting ... Then the lights came up, and it dawned on me, as I glanced down at the table, that it appeared as if I'd brought a German shepherd with me and let him shed hair all over the tablecloth! Oops.
Oh and I have a jury duty story too ... Only it was my Dad who got called for jury duty, a few weeks ago, and of course I spent the time to fill out the paperwork to get him excused, but then I forgot all about it (I'm just gonna blame chemo-brain for that one). As it turned out, he had never come up on the actual jury selection list, so he didn't exactly fail in his civic duty anyway, even though he wasn't there to wait around and see if he got selected. Phew. And I didn't even have to play the cancer card. Miracles!
Okay speaking of, I need to give a shout out to my hubby, who has been miraculously supportive through this whole thing and cheerfully bore all the responsibility for our son all weekend, while I got to do nothing but write, eat, sleep, and make friends. Here he is with our kiddo, from a few years ago:
Handsome fellers.
I love this picture, especially because it's from when we were traveling in Spain, where we hope to return after all my treatments and surgeries are over with. @Rosieo, I'm so glad your port surgery was smooth and easy. I hope that your chemo will go just as smoothly.
Time to try and sleep! Have a great week everyone!
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Mom2ABoy, glad you enjoyed your weekend, German Shepherd shedding and all! Love the photo of your guys.
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The mood swings.
I wonder if anyone can possibly explain why so many of us have anxiety (beyond the obvious fact that we're fighting cancer, here) at different times in our chemo cycles. For me, it's horrible on days 3-7, and then it pretty much goes away. I'm talking full-blown anxiety: crying, panicky feelings, chest pains. . . I swear it's one of the worst SEs I've experienced!
Anyway, sorry to check in just to say something relatively negative. So I'll add that, overall, I feel pretty okay in spite of Thursday's blast (3/6). The fatigue is catching up with me this time around, but the other SEs are more manageable.
Hope everyone had a great weekend!
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Hi everyone. Just crawled out of the funk of AC #3. It's funny how I thought I was so prepared (having gone through 2 cycles) but #3 hit me hard. I only started feeling better last night and I was able to do stories and bedtime for both my little ones. I had been sleeping (restful and non restful sleep) for days. I think they can tell I'm out of action as they both are super cuddly. My four year old has been very tentative and coming home and saying "hi mommy - did you have a good sleep?" "Hi mommy - are you feeling better? I'm glad you feel better".
AC#3 itself was fine. Another patient had a terrible reaction and it was one of the most horrendous things I have heard. I couldn't see him but all we could hear were screams. Poor guy. They were able to settle him down after a few minutes but it was scary to hear.
I scrolled as much as I could though the last few pages. Hope everyone is doing well. Loving the pics and memes. I have an urge to clean house but I think I'm going to take it easy for another day. Some kid crumbs ain't gonna hurt anybody for another day!
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I'm sick. It started a couple days ago. My temp has been hanging out in the 99.s. so I haven't called my MO. I have a sore throat but they gave me a rinse for that last week. I am supposed to be feeling better at this point in the cycle and instead I feel flu-ish. So frustrating! I am resting and pushing fluids and alternating Advil and Tylenol. I am supposed to have a Mom's Night Out tomorrow night but think I will have to miss.
I love seeing everyone's updates. Cheered me up this morning. I keep just staring at the screen so I think I will go take a nap...0 -
Mom2ABoy -- German shepherd, indeed. I told my friends it looked like a yellow lab had been wearing my hat. This was before the big buzz.
Michelle88 - AC #3 was harder on me, too: more fatigue and the awful vomiting and diarrhea. That must have been awful hearing the other patient suffering. That would have freaked me out.
Mososgirl -- I hope you start feeling better.
I have my last AC this week. I am happy to be reaching the end of this part of chemo, nervous about getting sick again this time, and a little anxious about starting over with Taxol (12 treatments).
Oops! I forgot to add that I have noticed that I am getting sensitive to smells, particularly "chemically" smells. I walked into Home Depot yesterday and almost gagged! Does anyone else have this?
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Going in for treatment #3 today. So many of you are having bad SE. Yikes. We're in a slump (and our bodies are tired!) Hang in there!!
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Morning Ladies, I had #3 on Friday and today is usually my worst day. I think my foul plan has worked so far. I spent half of yesterday in bed, the other half hanging about. I took two gravol before bed last night and slept til noon today. Thankfully my husband took today off work to take care of the kids as we know this I usually the worst day. And it's not. Now it's not great mind you, but it's not too bad, and not as bad emotionally and psychologically as last day 4. Keep the Faith!
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Michelle
Put the cleaning aside. I learned the hard way. I went to have my port put in on Friday and like I posted no pain, no nothing so Saturday I decided I would like to house clean my bathroom. I took out the windows and took the venetian blind down, put it in the tub and leaned over the tub to wash the blind. Then my husband said "you should not be doing that" and I thought, maybe I shouldn't so I finished up and left the rest for my daughter to finish. Well!! Sunday morning I woke, my throat felt like it was all swollen and my chest was so tight. All day yesterday I felt awful. So much for clean windows and blinds.!
So best to just take care of you and the rest will take care of itself :-)
I am onmy way to the oncologist to get my instructions for tomorrow. (1st day for chemo)
Rosieo
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Hello mostly-lurking AusUSA, thanks for your story. So sorry to hear about the bills. And happy birthday for last week.
HEY the long-term outlook for most of us is pretty good. We're being good girls, taking our chemo, looking after ourselves. In the other forums there are women popping back after ten years to say they're fine! I know some people are unlucky but breast cancer survival rates are now massively better than they were even 10 years ago. We should all be hopeful.
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MsBrompton, that is Truth. Thanks for the reminder.
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Hope your treatment went well today Sloan!
I am one week away from my LAST chemo. This week is when I feel my best - the week before. I am so eager to be done with chemo that I actually wish I could have it tomorrow just to cross it off my "to do" list forever! I want to crumple chemo up in a ball and toss it in the garbage.
I should just enjoy this feel good week.....which I will. Metal taste has faded away. Energy back.
Hang in there everyone! I hope all your S.E.s pass quickly and you are all feeling good soon.
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AusUSA hello! I just had my last TC. & my Dr told me last week that my period will probably be back in couple of months (I'm 6 month behind you on birthday). Guess I'll need to be prepared. About Birthday, that's what I told my friend. He had a birthday gathering couple weeks ago in a restaurant, which I had to skip. I told him I'm skipping this one, but I intended to be there for the next 50 parties if we are still alive (he would be 93, me 92).
LOLI graduated from Chemo today, summa cum laude I supposed -- my white blood count were always good, My side effects are minimum & manageable. I'm just going to rest after this & continue the positive thought.
The nurse announced to the Chemo Suite there's a "graduate" & gave me the "diploma". Going out with a bang literally -- they even have a desk-size Gong that I hit with rounds of applauses (should have my mom take pic...) Today went really fast only took 2 hours total for TC. Since I reacted well with the infusion, it only took 30min for the "C" in TC (first time it took an hour). I even took a pic of that - the very last chemo bag!
Bye-Bye
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michelle, AC #3 hit me hard as well. I'd also thought I was prepared, but nope.
musos, hope you feel better soon!
Vicki, I haven't noticed a sensitivity to smells, but I'm much more particular about taste (whatever I can taste, that is). Simply thinking of certain foods turns my stomach. Chemo is much like pregnancy--the fatigue, the altered senses of taste and smell, the occasional nausea and vomiting--only you don't get a bouncing baby at the end of the ride.
Rosieo, good luck with your first treatment tomorrow!
Suzanne, great update--happy you'll be finished.
superius...WOOHOOOO!!!!
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