Anyone starting Chemo in August 07?
Comments
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June--hope you have a wonderful visit with your son!
Lori--thanks for sharing the quote. I feel that way a lot of the time!
Harley--wow, what a bummer that your dh wasn't allowed in the treatment room. Is the room very small or is it run by Chemo Nazis? I think I'd panic all by myself. I'm lucky in that our infusion room is huge, which is good b/c the family and I travel in a small herd. The room also has snacks. I don't go places where there are no snacks.
Oh, and speaking of incompetent health care--one time the nurse gave my mom's Herceptin to some poor unsuspecting male chemo patient. Yipes.
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Nash,
Oh my gosh! A nurse gave your Mom's Herceptin to another patient?No, the room isn't small, they just never have allowed me to have anyone in there with me... I have noticed that from time to time, family members or friends will come in and bring lunch or something to patients who are getting chemo.
My dh was not here for my 1st two txs, but he was here for the last 2 txs. I told him to go in to the treatment room with me because he has gone into my exam room and all the other waiting areas with me... but, a nurse came by and said that he had to leave. So, another woman came in and sat down, and her SO stood next to her... NO ONE told HIM to leave!! I was so mad, so under my breath, I said "MY HUSBAND couldn't stay! They made him leave!" So, maybe they heard me, because he left soon after...They DO have snacks, but I never saw them or was even offered them until my last 2 txs!
Harley
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Hiya Girls,
I'm a human being again now. I woke up at 2:55am with a migraine and nausea, someone's cat box in my mouth (Haaaarleeeeeey....?!), and a "back-end Fire". Deep breath. I'd read that a se of the Nystatin was nausea and vomiting, but I was so disoriented at the hour that i sat on the couch and wondered if i should treat the nausea, or the migraine...so after nearly 30 minutes with the nausea threatening to make the decision for me, I took both the Zofran and Relpax. They worked...thank God. So I'm still taking the Nystatin and it seems to be working, and hasn't made me nauseated again...but we'll see about the morning. Maybe it pools up in your stomach? I"m sorry it's not working well for you, June. It's sure not FAST, but after the 2nd time I saw progress. And I think I can taste a thing or two.
Harley - the feet peeling is really interesting - i haven't heard that one yet from anybody. (Actually, my son had it when he was on Accutane, but that's another story.) The LE treatment sounds like a good thing. I'm glad you're getting that taken care of. I've been watching my arm...I won't go so far as to say it's swollen, but i have noticed it looks like it's retaining fluid. Could be just the hydration i've been pumping into myself. My whole body looks like that...and my ankles swelled during that last treatment. My ankles have never swelled in my life. I thought it was just the extra fluid, and sitting in jeans that are now a TEENY bit too TIGHT. (For a HIPPOPOTOMUS.)
The infusion room thing is interesting too. At the local hospital where I eventually chose not to have my treatments, there was a big "sun room" they called it. With 10 to 15 reclining chairs, on the third floor overlooking the beautiful desert mountains. When I went to my Cancer Treatment Center, they had individual rooms - about 15 of them - with beds and reclining chairs. The first two tx's i had were in the rooms, and the 3rd tx was in what looked like a big broom closet where they had 4 reclining chairs,(two would have been fine) curtains between each chair, and they said that was the way it was going to be done from now on. They had plans to open up a wing where everyone would have their infusion at the same place. One big room that would hold about 25 - 30 people at a time. Their patient numbers had tripled so quickly, they couldn't keep up. I didn't mind it so much, but if they're going to go that route, they should have a LITTLE space between each chair for family. (tx#4 was back in a private room...really nice, I gotta say.)
There are a whole bunch of people we haven't heard from for a while - how are you girls doing? Carol? Angie? Everyone else?...Hope everyone is ok.
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Hi All,
So, I guess it's true...the fatigue is cumulative. I'm just wiped out. Had my 3rd tx Monday and am so tired. I did get out for a walk this morning and did a few things around the house, but that's it. Oh, and the twitching is back. I know I've had it better than most, but I am so ready to get this over. Last one is on the 29th!! I wonder when I'll feel normal again??? Hang in there everybody.
Eve
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Hey Eve - you WALKED? I'm impressed!
And just FYI, for me, Day 7 post final tx, Official Record: "not normal yet." Better than 3 days ago, but normal is not yet. I'll let you know when it happens. I'm expecting a huge change for the better after day 10...
In the meantime, I think maybe I can think about walking a little bit. Thanks for inspiring me!
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June, regarding the Nystatin, my dh said the pharmacist said not to eat or drink anything 30 minutes after swallowing it. That's not listed on the patient info sheet, so I wonder if it's not working for you because maybe you didn't know that?
It's working. It's just like poison.
The patient info sheet also says to "complete the course"... are we supposed to have to drink the whole stinkin' bottle? One teaspoon at a time will take me through the New Year. I'll have surgically removed my own tongue by then.
(That'll show 'em.)
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Jackie, how'd yesterday go?
Nash - How did you find out the the nurse gave your mom's shot to the male patient? Certainly she wouldn't have said outloud "oh, sorry, my bad." Maybe it was:"Now where is that shot, I must have misplaced it..." Yeah. In someone else's BODY. I find it increasingly hard to believe that stuff like that is even possible. Mistakes will happen, but the nurses at my center ask my name, and birthdate just prior to doing anything on me. Even if they leave the room for a moment, they ask again. That is in addition to the wrist band they examine in the same way, and they ask me to confirm who I am and my birthdate again AFTER seeing the wrist band.(it's all printed on there.) At first i thought it was amusing. I'm not laughing anymore.
Did they tell you when they wanted do do another liver panel? How are you feeling today? (Please give your mom a hug from me.)
Hang in there girls.
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Hi, ladies. Hope all is going well today for everyone. Eve, I'm right there with you with the cumulative fatigue. Ugh.
The thing with my mom's Herceptin was a major medical boo-boo. The Herceptin comes in an IV bag, and has to be transfused. The error started in the mixing room, where the chemo mixing person put together my mom's IV bag, then proceeded to put another patient's name on it. Then the nurse just checked the name, and didn't clue in on the medication. Now, it is possible for a man to have BC and therefore be getting Herceptin, but it's pretty rare, and that should've been a tip off. So they actually transfused this poor man with my mom's Herceptin, and then yes, were essentially like, "my bad". Everyone in the room knew.
Fortunately, the man didn't come to any harm from one dose of Herceptin, but can you say "potential lawsuit"? The mixing person and the nurse disappeared from the center soon after, but I don't know if they were fired or what. This was a couple of years ago.
So I guess the moral of this is, make sure the nurses articulate which drug they are hooking up as they do it.
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And thanks for the hugs, Kaye. I feel pretty much the same level of crappy, I think, but I'm functional, so it's all good.
The liver panels are every three weeks, but last round the onc pulled an extra one three days before chemo. I figure that's what she's do this time again. I see her a week from today (next Thursday).
The problem is, although the onc is good about pulling counts, she doesn't follow up on things. She's a bit scatter brained. Very pleasant, probably nice to go out to lunch with, but she's a ding bat. She'll suggest ordering tests, not do it, then waltz in at the next appointment and announce that the test results (of the test that never occurred) are fine. She also keeps forgetting what stage my cancer is. So, I don't feel entirely confident about the health of my liver in her care, you know?
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Hey ladies. Sorry i have been mute for a bit. i had a total meltdown Monday when my Bilateral Mast was confirmed for 10/25. Like, i knew it was supposed to be on 10/25, but the "confirmation" just was too much for me. I spent the day in the fetal position. Since then, I have been trying to get over fatigue, sore throat, a cold, laryngitis. Simple stuff that is just hanging on & not going away. But i am very lucky not to be suffering with the thrush and everything so many of you have been dealing with. But this last tx really did throttle me a bit. More than the others did, for sure.
Nash- I wish I had posted to you sooner. i am so glad you come to us when you need to vent. The strength you show in dealing with your own situation and also helping your mother is unbelieveable. Like so many of the ladies on this site, you and your mom are an inspiration. "Fighting the fight." And it is so Ok to get sad and/or pissed off. It's hard and it is NOT fair. You are so entitled! Vent on. And good vibes will be coming your way from NY.
And as for family & friends not being allowed in a treatment room, i am shocked. How can they expect you to sit there alone for hours? I guess I am lucky to have a place that allows visitors (we travel in "herds" too!) and offers snacks and lunch to patients and their guests.
Well, I had better get going. i need to pick my boys up from school & daycare. Duty calls.... take care everyone. Angie
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Kaye,
So sorry!... I thought there was something missing here, and now I know what it is... my cats' litter boxes!!!You are TOO funny! lol
My feet... well, after several of my walks/runs, I noticed that I seemed to have these blisters on the bottom of my feet... My dh said that is normal when you start exercising again... I just kept watching them, and one night, I got tired of it, so I cut the old dried skin off... I really don't think it was from walking, since it's not like I walked 50 miles or anything!! It must have been from the Taxotere, I think... Strange! They seem to be getting better, since I clipped off the dried skin with my fingernail clippers... I know, Gross! TMI!!!
Feel better soon!
Harley
P.S. As to the lymphedema issue, it really may be very mild lymphedema. Mine is very mild, and the therapist suggested some exercises to try. She will also be pumping out some of the excess fluid, so that my arm, which is hardly swollen, it was only noticeable when the therapist measured it, and hand will get 'small' again. Then, I will go and be fitted for a sleeve and a glove... I am thinking that is the best way to go... It is better safe than sorry...
Hugs,
Harley
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Thank you, Angie! Hope you feel better soon. Ugh. Hang in there with the surgery coming up.
Harley--I noticed I was developing blisters when in the past I never have. Weird, huh? Has to be from the chemo.
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nash,
Thanks for confirming that weird foot blister - skin thing... it was really strange!I'm thinking about you and your Mom, and praying for you both...
Hugs
Harley
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Hi, yall. Im new and battling breast cancer for the secong time. Im 39 and have 3 children, all girls 19 -7 - 4. This time the cancer is a real demon. Its triple negative AND inflammatory AND is in both breast!! I need a little help with my chemo regimin. I have already had 4 cycles and have 2 more to go. Then Im having a double masectomy then radiation. I ask my oncologist if they are planning any chemo after surgery and her responce was " it would be out of the box".The inflammatory cancer is in my rt breast which is the same breast I had cancer in the first time. Because of this I cant have it radiated again. If the only chemo I have is before surgery and I cant have the right side radiated, how can I be fairly sure the right side is cancer free?
Any suggestions would help.
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Hi chemo mom, Im having a double masectomy in December. So far I havent melted down but I think its because Its not real yet. Or maybe its just to scary to think about so I keep blocking it out of my mind. Ill be thinking of you on 10/25 . Stay in touch.
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Angie - HUGE hug to you.
There really is nothing else I can say, other than you young'uns are true warriers. I really admire you. Dispite my verbose complaining, this is easy (for me.) Easier than dealing with all this AND trying to raise little ones too.
My kids are 21 and 25. I've done all the damage I can do to them at this point...and they pick themselves up. Or drive me where I need to go.(...now, mind I didn't say "pick up after themselves...")
And Nash, you've got each generation covered...It's unbelievable. You are a wonder.
I'll keep praying for you girls...i know you're doing a great job.
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Welcome, Kimmie. Wow--you've got busy boobs. I wish I knew more about IBC in order to help you. There's a section on the boards here for IBC, and the gals there might know more about the radiation issue. There's also a section for second/third primaries, and some girls there may know about the radiation, too. And maybe someone from our group here will know. If nothing else, we're good at giving cyber hugs.
Has your onc taken your case to tumor board? I'd definately get several opinions from various radiation oncs just to make sure there aren't any other options on the right side. On the chemo, the onc is probably right that the 6 rounds should be sufficient at this point. What are you on right now?
How old were you when you had the first primary? Have you been BRCA tested?
Sorry you're having to deal with all this. But we're here for ya'!
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Wow - Hi Kimmie.
Nash is right - there is a much broader base for answers on this board than this little thread. If you posted it as a new thread in one of the places she mentioned I know you'll get the info you need. I'll be looking for you...come back.
(Thanks Nash. I'd just read that and was trying to craft a response, and you did it better, quicker and perfectly.)
Kimmie, here's the link to the inflammatory bc board:
http://community.breastcancer.org/topic/81
and here's the link to the 2nd/3rd primary bc board:
http://community.breastcancer.org/topic/88 -
Hello All.
June - Thanks for posting about your Taxol experience. I start next Thursday and it's good to know what to expect.
Kidsmom, DeAnn and Jackie how's it going for you?
My 4th a/c was horrible...so much vomiting for so many days. I think the nurse forgot to give me my anti-nausea meds. I just got to read everyone's posts for the last week last night and was too shocked and upset about Stacey to post. Let's all have a group hug.
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Jackie,
How did your last chemo go? We are getting worried about you. You have not posted for awhile...How are you doing, hon?
Harley
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Hey Ladies,
Welcome, Kimmie. I know a friend of a friend who was diagnosed with IBC in September of 06 and she is now cancer free, so I know it can be beat! She didn't have the prior issues, but I know she did chemo, surgery, then more chemo, then rads. I hope the IBC board can give you some good advice, but we're here for moral support! I've only been on this board for a couple weeks, but I learned quickly that these are a bunch of wonderful women!
To all the Taxol ladies (good luck with your first round, Tami!), I go in for my 2nd Taxol/Herceptin tomorrow, but this week was the best I've felt in a long time. The fuzziness and general malaise and fatigue I felt on AC was pretty much gone. I was able to really get back into exercising again, and everything I eat tastes good again. Hallelujah! I was so tired of the metal mouth. I didn't get Nuelasta, but so far the immune system seems to be kicking along OK. My four-year-old son had a fever of 102 for three days straight, but I, mercifully, have stayed in the clear. I'm sure that the effects will start to accumulate over time, but so far, Taxol is WAY easier.
Oh, and I had blisters on my feet too for awhile too. I've been trying to walk 30 minutes at least 5 times a week and was doing great with it until my 4th round of AC. Then my feet just started to hurt when I walked and it was like my calluses all of a sudden turned into blisters. It finally went away after about ten days of me babying my feet with aloe and tea tree oil. I wondered if it might have been an effect from the chemo, and now after hearing all of your stories, I'm pretty sure it must have been.
I better get off to bed so I'm well rested for tx tomorrow. Of course, I'll probably sleep through treatment from the Benadryl, so I could just as well stay up! (By the way, that seems so strange that some treatment centers don't let you have visitors. Even if I sleep, its awfully nice to have by dh there.)
Hugs to all.
DeAnn
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Hi Girls,
Kimmie - how is it going? Are you finding your way around the board? It is somewhat confusing because some subjects tend to "overlap". My dh went back later to edit my post and put the actual link in there for you. You can just click on that. Hope you find it, and hope it helps.
Eve - I just want you to know that you and Harley inspired me yesterday so much that I walked! It was pretty big for my brain, even though it was only 15 minutes. But it was 15 minutes and a few small steps better than sitting on the couch. And a giant leap toward normalcy. Harley, I can't believe you RUN.
June - How's your mouth (Thrush?)
Angie - just want you to know I prayed for you today, sister. Colds, and all that stuff...try to take it easy.
Tami - TELL me they gave you the anti-emetic and it didn't WORK. Don't tell me they FORGOT - I can't take that. Unbelievable! I, for one, have learned a HUGE lesson from that story of Nash's (about the male patient getting her mom's infusion)...I'd never questioned that they knew who I was, but I guess what we need to ASK also, is "are they giving us what we're supposed to have!" Did they give you the steroid the day before? Is'nt that pretty standard? They always asked me if I'd taken my Decadron that morning. If I hadn't they would have put up a bag for me. That is supposed to help with the nausea, too. ALONG WITH SOMETHING ELSE at the time of the infusion. They ran a bag of Zofran 30 minutes before they gave me anything else. What a nightmare. I'm glad you posted, I was wondering about how you were doing.
DeAnn - Let us know how today goes...(2 down, 10 to go...!!)
And finally - day 9 post final tx for me. I'm sleeping well, I'm feeling more and more like it really is going to be over, tongue still a little white, but 85% better. Hindquarters will be taken in to see my local gyn on Monday..."could be a yeast infection" (ya think?) Bloated/gassy but I'm going to try the probiotics again (and stop eating Brie Cheese and crackers.
) I'm finally letting myself think about trying normal things again...There is hope. There is ALWAYS HOPE.Have a good day girls. Carol, post. You're making me nervous again.
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WOW, its so nice to hear from all of you and I'm going to try the links!
I appreciate all the help, I'm totally confused in here but I'm determined to figure it out, I need the companionship and I know I have knowledge that will help others.
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Thanks a mil.
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Nash - your busy boob comment made me LOL!! and I havent done that for daYS. what is a tumor board?
Taxol and carboplatuim.
I was 27 the first time, havent had any genetic work yet but its something we will do at some point.
Thanks
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Kimmie--Tumor board is when the oncs, rad oncs, surgeons, etc., all get together and discuss your case. Not all places have one--mine is through the university hospital here.
Glad I made ya laugh!
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Kaye,
Well, my running is a very SLOW run... but it is faster than walking. I have been out walking about 2 times since my final tx... and NOW I am JUST TOO TIRED to even walk!
dh and I walked through the Mall today, but that is about all I had the energy for ... I had to get a blue topaz bracelet repaired, because one of the stones fell out. They had to order a new one, and it was $expen$ive !! When we picked it up today, one of the TINY diamonds was missing from the bracelet, so I told the mgr. and he said they would replace it while we shopped...Now, for a nap, I think... Maybe I can force myself to go on a short walk... I wonder if that will make me feel better?
All you women inspire me...
Harley
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Hey Everyone,
Well I've had quite a week. As you know from my earlier post I had Taxol #1 a week ago today. Felt so much better that I worked on Monday, Tuesday, and Wednesday. While at work Wednesday I had a real dizzy spell in the middle of an event I was running. I sat down and it passed in a few minutes. Got up Thur. am and went to work feeling a little weaker but okay. About 9am on Thursday I got deathly ill and felt very faint. I went into the main office at work and proceeded to promptly pass out. Because I work in a large rehab center there were mulltiple nurses in the office. When I came to they told me my blood pressure was 68/36!!!! They started throwing fluids down my throat and called my dh for me despite the fact that they wanted to call the EMT's (which I refused). My dh got me home and into bed and I was drinking like a 'lost man in the desert' and took my B/P after an hour or so. It was 100/70. Then I called the cancer center. While I was waiting for them to be so kind as to return my call a handful of brain cells kicked in and I figured out "all by my little self" what happened to me. I have been on anti-hypertensives for 12 years, one of which is a diuretic. I've been well controlled but certainly since I started on the A/C my B/P has been lower than it has been in years (but still in very good range). Long story short the meds were peaking about 9 am Thursday morning and it just dropped my pressure down to a critical point. Of course the center wanted me to come in for fluids and would not in any way acknowledge that the antihypertensives could have possibly affected me when I pointed out that NO ONE said ANYTHING ABOUT TAXOL AND B/P DROPS!!!!! Now, you all know how I've raved and raved about advocating for ourselves but this is ridiculous when it is plastered all over my medical records that I'm on antihypertensives. Back to center today for weekly labs and discover that they forget to order a chem panel last Friday so also didn't realize that my sodium and chloride have probably been very low for 3 weeks. I was really groggy after the last chemo and forgot to ask for my copy of the labs or I would have caught it myself. So.....I got to see a strange NP, not the one I've always seen and didn't see 'hide nor hair' of my nurse or oncologist....though I know they were both there. I had all labs done and then got a liter of fluids. OBTW, I DID NOT take my meds this morning and I probably won't for a l....o....n....g time. After much prodding of the NP, she finally said,'yea, it's probably a good idea to monitor your blood pressure and only take it if it climbs back up to 150/90 and is consistent. Duh......ya think so honey???? Anyway, I'm home and do feel so much better and am anxiously awaiting the arrival of my son at 7:30p tonight. The whole family is going out to a Japenese Hibachi restaurant and I'm just so grateful that I can go (figured I could always eat rice if nothing else, right Kaye?
Eve: Yes, I'm so sorry that you're feeling the accumulation of the 'dreadful drag butt syndrome'. What are you taking? But I'm astonished that you can exercise....I couldn't get up or down my own staircase. You be strong and drink...drink....drink.
ChemoMom: Who wouldn't be freaked? The whole thing is too frightening for description.....and no one really knows except those of us walking this road. You allow yourself please to be normal enough to be frightened and I know you will find the strength to have yourself as ready as possible for your surgery. You do know that all of us on this board pray for each other don't you? Well, WE DO!
Please take care.
Tami: Was the 4th. tx of A/C your last one on that drug? As my sweet chemo sisters can attest to I've called that drug every vile name known to man. But it will pass and you will get through it.....I was down to crossing each day off the calendar to try to psych myself into thinking the time was going quicker. You gotta do what you gotta do and right now find anything that helps even the slightest bit on an HOUR to HOUR basis and you will come through honey.
DeAnn: So wonderful to hear that you're feeling so much better...we all take hope from each other and we need to hear it all....the good/the bad/ and sometimes just the ridiculous. Are you experiencing any of the bone pain associated with Taxol?
And last but certainly NOT least,
Dear Kaye: I knew you were going to pull right through this and you are. And you're back to making jokes......I've missed them! I had to laugh though regarding your comment, something about being the 'ole broad' on this board. Well, sweetie, let me MAKE your day.......I'm over a decade older than you.....so child you're far from an 'ole broad' and I suspect you never will be. It's just your wisdom and empathy and 'sometimes' (LOL) your humor that seem to make you much much wiser than your years.
I didn't mean to leave anyone out but my fingers are beginning to throb (damn damn bone pain).
I hope everyone has a blessed and well weekend.
June
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I love you, June. Not because you're older, but because you talk more than me! (there ain't many of them!
)Serious note: Phew, girl. Stay on top of those meds. Scairy!
Nash...you are priceless. She's right, Busy boob indeed was a classic.
(I'll be stealing it.)
Kimmie - Great determination. Keep pluggin'. Btw, my National Cancer Center (that is pretty well known) doesn't have a tumor board, but the local hospital here does. I thought that odd.
Tami - are you better today? I sure hope so.
Ok. I hear the distant drum roll of a celebration. I've been waiting for day 10, and it's day 9 post final tx, AND: I can blow my nose without a nosebleed...I walked 35 minutes today...I remembered where my muscles to hold my stomach in were located...my tongue is pink(ish)...my bottom is allowing me to ignore it...and i THINK, MAYBE, a tiny taste bud has escaped and is hiding in exile in my mouth. It's not working properly yet, but when I raised the water bottle to my lips today not every cell in my body screamed out POISON, POISON, RUN AWAY. (It's hiding out with the last remaining brain cell, and i'm sure they're planning to create little Tasty Thought Things.)
However, every pubic hair i ever had just fell out 2 days ago. Nice timing.
Life is good, ladies. Chemo is eventually finished, and it's all good!
Have a great weekend!
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Hey, while we are on the subject of hair. ALL my nose hair fell out, HaHaHa
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