Taxotere, Carboplatin and Herceptin
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Hey Bethany - loved the videos! I particularly liked the "Hazel laughing at daddy" as the sound just couldn't help but cheer anyone up! How lovely she is - you must be so proud! Glad to hear that Tx3 is going well - I head into that this coming Tuesday. I almost see the light at the end of the tunnel!
Gina
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I am glad so many are doing better as the tx go along. I am hoping this next Wed. will not be as bad as my last one. I know I would rather have diarrhea than the other (I think) but I really do get sick and can't get enough fluids down. I just hope I can do better this next one. I am still drinking a lot of water and juice.eating anything that can be considered fluid related.
I have a correction to make on the low blood pressure. I had called my doc about the blood pressure meds ( my family doc who prescribes these for me) about how I should take these or if I need to take something else where I can take as needed or something. They were going to give me more meds and I was not going to go get them because I read that dehydration makes BP go low and he had said higher. My husband was about to go up there and talk to him about this. He had said talk to the onc about it. the next day Sandy his nurse called me back and she said she had talked to him again and he said he guessed he had not understood what the message was. he said I was correct in thinking that is why my BP was so low was dehydration. he told me to monitor my blood pressure and take the pills as needed. I am still going to talk to the onc this next week since I see him then. I am beginning to swell a lot in my legs again. I have lasix so if I need to I can take that and it will probably keep the blood pressure down some too. I am beginning to wonder about too many docs.I have gained about 3 pounds but I think it is all in my legs.
My grandson moved back to college today. I am really going to miss him. He was ready but wasn't either. I guess he wants to get that special treatment grandma and grandpa give but know he has to move on. he loves his studies but not his job. He is not too far away though so he can come home when he has a long weekend. His roommate and him are trying to furnish an apartment with cheap furniture. this is going to be interesting.
Bethany I could not get the video but i am going to try again. I love little ones they are so cute!
Carolyn
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Carolyn: I was told that when dehydrated your blood pressure is low and your pulse is high (normal is 60 - 100 for the pulse). Your heart is working more because there aren't enough fluids to push through. Also your veins disappear. Before I got my port I started out a couple of blood draws drinking down lots of OJ and ice water before they could get a vein. I learned to drink a bottle of water before I went for a draw.
Terri.
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Terri: Good advice. I learned that when I was a blood donor - it was always so much harder when I hadn't drunk a lot beforehand. Drink before and after, everybody!
Sue
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Sorry I'm so late with this but I just wanted to say thanks everybody for the posts about my panic.
) I'm going to ask the doc about it on Monday when I go for tx #4. I'm not sure how to ever get past the fear and I worry that I'll be having panic attacks about every little thing for years to come. Not fun!Hope you all have a great weekend!
Aly.
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Got a call yesterday that I now have a bacterial infection in my bladder so back on SeptraDS/Bactrim DS. Now what? Will this stop the chemo now scheduled for Tuesday? Will they want to drop my infection properties with trying to battle this infection? Pain is still away and I feel so good just feeling good. Been such a long weary road. Hope all is well with all you camp buddies....
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Brenda, I can't say what your doctor will do (it'll probably depend on your pre-chemo blood counts), but I run with a nearly constant sinus infection and my doctor never stops my chemo. They delayed my first treatment a bit to give it a chance to clear a little because it was really bad at the time but when it comes up again, she just slaps me on antibiotics and sends me to the Lord High Poisoner (to quote Shelby) anyway. They didn't even stop my chemo for the blood clot. I know you worry about getting your chemo on time so I'll keep my fingers crossed that this doesn't hold anything up for you.
)Hugs,
Aly.
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Yeah, Carolyn, isn't that swelling in the legs the pits? I've been on my feet all day, and our family is about to go to the Night Zoo. I feel like someone with 125 pound body on 600 pound legs. If you all start heading west, it's not the second gold rush. It's because my legs now have their own gravitational force! I'm going to a Beatlefest party tomorrow night, and I'm seriously concerned whether or not I'll be able to zip my go-go boots. Oh well, may all of my problems be that small!
Aly, you'll be in my prayers for that 4th tx. You know, my side effects were much milder that treatment, except for this dang water retention. May they be so for you, also.
Brenda: you're also in my prayers. I pray that things start going much smoother for you. You've had much more than your share of complications.
Have a good weekend, everyone!
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Thanks Shel. My side effects were much milder for tx #3 and I was glad. I only had 2 days when I was really down hard. My doc adjusted my dose since I have lost 15 pounds and I'm betting that had a lot to do with it. Should have probably done that for tx #2 and it wouldn't have been so bad. Anyway, here's to hoping and good luck with those go-go boots!
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Hello out there! I was an oncology nurse for 25 years before my diagonsis. Suddenly I was the one sitting in the chair and my colleagues were treating me! I received my first TCH 10 days ago and yesterday was the first day I felt really good. I had a solid week of nausea, severe taste alterations and constipation. I found switching from oral compazine to zofran helped with the nausea and I am still trying to find the right combination of stool softeners/laxatives. I have not started to lose my hair yet, but I realize that it is inevitable and I dread it more than anything. The wig is ready and waiting. This whole thing still seems like a bad dream to me. I look to all of your for support and hopefully with my background I can be of some support to you. Good luck and lots of love.
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Welcome rak. Sometimes I think it is worse for people who know more of the details, but maybe your experience provides you with that balance of knowing the science and knowing the wide range of individual reactions to the chemo. Hopefully, you will still feel free to call in when you have side effects like the rest of us. I think the constipation/diarrhea is so important to try to control - my first Tx was bad that way, as I waited too long to control it and then it was much more difficult. Tx 2 was MUCH better (for everything) for me, though my dose was reduced by 15% because of a neutropenic fever I had on day 12 of Tx1. I go for Tx3 on Tuesday and plan to use Colace Sunday and Monday nights and Senekot on Monday evening. Hopefully that will counteract the Dexamethasone and Zofran!
Good luck to you for the next 10-11 days. I'm sure we will make good use of your knowledge, and we are here supporting you every step of the journey. One thing about this bad dream - it does end. So many of the participants on this board have proven that we can and do make it through this difficult stage. (PS - a sense of humour helps!)
Gina_M.
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Rak;
Welcome to Camp Chemo, the only camp where EVERYONE is homesick! (And on the bad days, yr home sick, too.) Hope you find lots of good support here. You're in a hard place, too, being the proverbial Oscar Mayer employee at the weenie roast. You know all the nasty crud they put in those plump little frankeroos. Euwww. Please look back through the posts. You'll find lots of ways we have coped with post-treatment bowel lock-down. Next tx, you'll be earning the Golden Latrine badge for superior elimination yourself! You know better than anyone that everyone's body is different. Zofran stopped me up to the point where enemas wouldn't work! But treatment 2, I discovered my Bowelerama 3000 Pretreatment Prophalaxis, the recipe for which I posted earlier, the philosophy behind which is to induce mild diarrhea the day or so BEFORE treatment (because the dexamethasone kinda plugs me slightly) and then titrate back as necessary. Post treatment probiotics help, too, if your doc will let you partake. Here's to mild side effects for you! Also, please check out the Camp Chemo theme song. You'll be the hit of the infusion room if you manage to memorize a few verses!
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RAK, i am sorry you are here but hope you get lots of support from us. My problem is not constipation but diarrhea. Yes, everyone is different and yes the taste smell is a bad part and probably the most constant for all of us. I guess you know to drink lots of water and liquids. I ate Popsicles too because the cold made my mouth sores feel better. Try not to get these because they are terrible. Rinse brush with soft even child's toothbrush often. they gave me a special mouthwash at the chemo chamber and it really helps. It is called Prevention for oncology. I use this last. I rinse with salt,soda water and then brush and then rinse with the Prevention which burns most of the time. If you have a Walgreens they carry it. the only place out here that does. It is white bottle and red and yellow decorations.
I was so scared for the first few tx but I am calm for the Herceptin now but when it is the full poison I get stressed for what might happen afterward. I have learned not to go anywhere if I feel just a little sick because I will get sicker. I hope you are totally different than me.
the red blood cell shots and the WBC shots are what I hate the most because I don't feel well from them. I was told if my RBC don't stay up i will have to have a transfusion. I don't want too!
Have a good weekend to all.
Carolyn
Brenda, I am hoping and praying for you that they will do what is best for you. Drink that water girl! No soda pop. If I want a bladder problem just drink pop and I get one.
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Hey Shel, can you post the camp chemo song again? It's waaaaaaay back in the thread I think. I can't find it!!
Aly.
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Hey campers! Here it is once again! Just pretend you're sitting around the campfire with a Dixie cup full of bug juice and a s'more. I think you'll like this a lot more than Kum-bay-aaa.
Camp Chemo
Sung to the tune of “Camp Granada” by Allen Sherman
Aunt Begonia, Uncle Nemo,
I’m writing you from Camp Chemo.
I’m on steroids—they think I’m witty.
It’s just too bad they cut off my right titty.
The infusion—it was nasty.
Gave me too much carbo-plasty.
The herceptin makes me snotty,
But I don’t know why I can’t go to the potty.
I’m now losing all my hair-a.
That is thanks to Taxo-tera.
Don’t know which end needs unloading.
After several days, my bowels are now exploding.
Can’t make white cells any fast-a.
This is why I’m on Neulasta.
Lips are one big, ugly blister—
Double dare you to fix this one, Dr. Lister!
(bridge)
Make it end! Dear Uncle, Auntie,
It’s so bad! I’m on a rant-y.
Don’t let them stick me again
In the arm or worse, in my rear end.
Make it end! I promise I will be so good,
A pillar in my neighborhood.
Life used to be so sweet
Before the tumor in my teat.
If this cup could pass from my lips,
I’d give every waitress high tips.
Let it end now, God my Savior,
And I’ll clean up all my horrible behavior.
Wait a minute, looked in the mirr-a.
Face has never looked any clear-a!
I can work out. I feel much stronger.
Guess I’ll put up with this crap a little longer.
Copyright Michele Marzoni 7.4.08
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Shelby, Thank you for re-posting. I think I joined after this ballad had been composed. Love it -- and especially that its ending is on a positive note --- with the idea of "ending" being the operative word for all of this distress.
(And, meanwhile, for a little mild exercise today, please do a Texas Hill Country raindance for me. I've had quite the time keeping the yard from dying in this horrible and relentless heat while Richard has been away -- looks like a "cold" front may be coming down from Colorado tomorrow -- please perk up little plants)
Dear Rak, please let us know specifically any way -- or generally how -- we can support you.
Happy Sunday all., Bethany
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Hey Bethany,
How is it going this time around? I think you had your treatment last Tuesday, didn't you?
Gina
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Hi Gina, Seems like the GI issues have been easier to deal with --- coping a bit better --- that is, moving back and forth more quickly between the two extremes -- GasX has helped me quite a bit with the stomach knottiness -- Have walked 3x this week which I didn't do before during days 1-6 --this time feel more able to walk and also think it helps with "digestion".
Feel kinda breathless at times -- way more tired than previously. RBC is in anemic range. Eating spinach and even had a steak the other night -- it hit my tummy like a rock though and so I don't think I'll do that again.
Really have been looking forward to being able to say that I"m half way through -- but it's funny how your mind plays tricks on you ---- have been kinda blue to think that I still have all of what's behind -- still ahead of me. Right now I'm so sick of trying to figure out what to put on my head that doesn't call attn to the whole issue -- and it's just so hot here.
Richard just called from Anchorage -- just got off the plane from having been totally out of touch since 8/8 (fly fishing with the Grizzly Bears ;-}.......and I think his returning will definitely bring some relief - and perk me back up. Just feelin' pretty blue today and tired of all of this -- as we all are..... All normal -- to be expected -- feelings and complaints. Thank you so much for asking. B
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Okay--here's a weird one for you. You know how some of us have eye twitches? Does anyone have twitches in their LOWER ABDOMINAL MUSCLES? Lord have mercy! I had to down myself out with barbiturates last night to go to sleep, because my lower abs were bouncing all over the room while I was trying to sleep!
Bethany: What tx are you on? Number 3? Yes, the breathlessness on exertion will hit more around 2-3 than the first. It's the anemia. My nurse said diet wouldn't help anyway. It's at the bone marrow level. You can always do the painting thing:) If we had an N of more than 1, we could do a controlled study of The Effect of Red Corpuscle Painting and Ideation on Chemo-Induced Anemia in Breast Cancer Patients. I'll do that rain dance AFTER I've had my legs up the wall for 30 minutes or so. Between church, lunch, the Verizon store and Costco, my legs are about the size of beer kegs. And that's WITH Lasix.
I have become increasingly sensitive to people staring at me in public places. I'm more paranoid than Cheech and Chong holding a kilo at a police convention. You know, if I could just be invisible, it would solve most of my problems. (It would be a lot of fun, too.) What do you all do when people are just openly and rudely staring at you?
Have a great week, you all.
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Shel, I hate that too. Most of the time I just stare back as if to say "what are you looking at exactly?" and they usually stop staring but every once in a while I'm tempted to yell "DON'T WORRY, IT'S NOT CONTAGIOUS!!".
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Are you guys experiencing stares b/c you're going "commando"?
I'm not brave enough to invite attention to my bald head, but I do still feel self-conscious when I'm out -- wearing a scarf - no matter "how cute" b/c it's 104 degrees outside. I know people are looking and wondering.
-- plus I don't feel like I look like Bethany right now. If not vainly self-conscious, I am at least uncomfortable. I guess I wonder if people might be staring at my puffy face? my slick skin? my bloated belly? at me, an outsider who represents the face of what could happen to them... someone who is out of control....whose eye is twitching.....whose nose is bleeding....a person who will never ever be the same person she was before this diagnosis.
I pray that whatever good comes out of this clings to my soul -- and hoping that this distress will fall away -- leaving only compassion and understanding for others we see a year or so from now.
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Are you guys experiencing stares b/c you're going "commando"?
I'm not brave enough to invite attention to my bald head, but I do still feel self-conscious when I'm out -- wearing a scarf - no matter "how cute" b/c it's 104 degrees outside. I know people are looking and wondering.
-- plus I don't feel like I look like Bethany right now. If not vainly self-conscious, I am at least uncomfortable. I guess I wonder if people might be staring at my puffy face? my slick skin? my bloated belly? at me, an outsider who represents the face of what could happen to them... someone who is out of control....whose eye is twitching.....whose nose is bleeding....a person who will never ever be the same person she was before this diagnosis.
I pray that whatever good comes out of this clings to my soul -- and hoping that this distress will fall away -- leaving only compassion and understanding for others we see a year or so from now.
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Bethany;
No. I haven't gone commando "in public" other than Comic Con; but the hats and do-rags I wear are definitely those that say "there's no hair under here", especially since I'm one of those people who can't stand my ears covered up, so my ears are usually sticking out. I find that mostly who stares at me are women. Probably worried that they're next. Maybe that's a good thing, because if they see me and it inspires them to check out their own breasts or go get a mammogram, my freakish presence has been an agent of social change. However, in the meantime, when I think about looking like this or close to it for over a year, it becomes quite depressing. Makes me wonder, what is it about hair that's so blasted important. Like they cut off my right boob. I'm almost alright with that, but I lose my hair for a couple years, and I'm pooping my pants about it. I guess it all comes down to carrying a visual deformity that marks you as a "sick person". I just can't wait until I have enough hair to pass as a "normal"--so that I can be viewed as myself rather than as a "cancer patient".
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Hi all -
I'm off to my blood test and onc. appointment in preparation for Tx3 scheduled for tomorrow. I hope it goes well, as I don't think I could bear a change in schedule. So far I have not had any stares that I know of (maybe I'm so in my own world I don't see them?), but I also have a couple of wigs that are so comfortable that I can wear them all day and even forget they are wigs. I have one that looks just like my hair did, and my DH forgets it's a wig! Look good feel better gave me tons of makeup and I find that I take the bit of extra time to put some on when I go out. And I've always had a few sizes of clothes in the closet (I'm short and 5-10 pounds make a difference in sizes for me) so I try to cover up any weight fluctuations. I'm also lucky because I don't have to go out on the days I'm really feeling sick (and probably look green).
I think that one thing we have to keep in mind is they we are MUCH more critical of ourselves right now - seeing every flaw, every side effect that I'm sure most people don't see at all.
Cross your fingers for me as I head off to get the verdict for tomorrow!
Gina
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Gina;
You brought up makeup. I wish I could WEAR makeup! My eyes tear so much and I nose runs so voluminously, that any makeup I put on would run off before 10 a.m.! Hey--here's a blessing of good blood tests today! By all means, let's stay on schedule and get this thing done!
Shelby
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Makeup!! Ugh! I have a complete set of new eyes. I woke up this morning to double eyelids! they're so puffy that the top part comes down to meet my 3 eyelashes. Then to top that off (literally) the eyebrows are hardly there anymore. I keep try to use eyebrow powder to color some in but I'm seriously thinking I need paint now! Pretty much going for the drag queen look!
Shel ,
My stomach hasn't started to twitch yet but different parts of my face has along with both eyes. I was talking to someone yesterday, I blinked and my eyes got stuck together! It was a little awkward. hahahahaha. And I just love it when my lips start twitching!!!
Donalee
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Donalee;
Last night, my eyelid, abdomen and right calf were all twitching at once. What's left? Grande mal seisures? And I've even given up being a drag queen. No self-respecting transvestite would claim me as a sister. I think I'll go for the Uncle Fester look for Halloween. That might be good for you, too,with your eye problems. Just black it all out underneath:)
Shelby
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Hey, Ladies!
I thought I would just check in and see how everyone is doing. Some of you must be close to getting done with the TC part...the Herceptin alone will seem like a dream as far as side effects go. The worst is just about behind you!
I finished Herceptin on July 17th and last Friday, my good friends gathered and took me out to dinner at a Mexican restaurant. The pina colda was good...the chimichangas even better - but the best had to be the Boob Cake that my friend made and had them bring out. She had used two mixing bowls to recreate breasts, iced them in a lovely shade of tan and topped them off with two Hershey Kisses! I think I might ask her to do my wedding cake!
Maybe it is all in my head, but I have noticed that my hair seems to have grown a little faster in the last month. It looks totally on-purpose now, albeit still waaay shorter than I would ever have cut it. I still wear my wi, but I go to the gym and sometimes grocery shopping with a lime green paisely bandana. My mom hates the look - she thinks I look like a hobo! Great support, huh?
Hang in there, Ladies - I can't wait til you all have Boob Cakes of your own!
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Nan! I've missed you soooo much! I'm delighted you're doing so well. May I be so fortunate! I am done with my TC, but it's not done with me yet. I can't wait to get rid of these side effects. I guess part of me is scared that they won't go away and I won't ever feel healthy and strong again. I know it's silly--but it's real. Good to hear about the hair. I've been obsessing about hair lately.
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Hey Shel - you will be fortunate. The side effects become such a consistent part of our life, then one morning you wake up a realize you feel a little less crappy...a little less bloated and puffy. They just sort of melt away until you almost forget what they felt like to begin with. It is a beautiful thing!
I obsessed about hair before I was even diagnosed. It is such a part of our identites, and we don't realize how important it is until we lose it. I hate my short hair - although I am grateful to have hair. I just so want it grow for the wedding. I think that is another reason why the hair thing is so hard - it takes forever to get it back to where it was...and unlike a scarred or missing boob, it is harder to hide!
What is next for you - do you need rads?
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