Taxotere, Carboplatin and Herceptin
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2nd question Some people get the test the day before. I had my blood tested as soon as I came in for my chemo. It would take 1/2-1 hour to get results. I would then see the onc. If the results were fine then they told the pharmacy to make the chemo. That would take at least an hour. It was a long morning/early afternoon doing it all in one day. I got my herceptin as well.
premeds Zyrtec, Protonix (or Prilosuc if it works for you), Decradron (dexamethasone), Emend. I know there was benadryl in my drip. Not sure what else might have been in there.
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Had bloodwork the day before, and it went fine. I would get the blood test, then see the onc for pre-chemo checkup. He would have the bloodwork right away and know that my counts were acceptable to receive chemo. (I never had neulasta/neupogen shots.) Then the morning of chemo, I would go KNOWING I would receive it, get ready and go. I don't think I would have liked being all ready to go over and get chemo and then have the bloodwork say 'no go' and have to go home again. I liked going the day before.
I know there was decadron and benadryl in my premeds, not sure what else. Maybe zofran? Then they did the T, then the C, then the H. Took most of the day.
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dance - my pre-meds included Tylenol, Bendaryl, Aloxi, and Decadron. The way my center worked was that your first stop was to have blood drawn. They had a quick CBC, less than half an hour. The bloodwork results were usually available while I was seeing my MO (saw him, or the PA, every appt.) because they need to know your counts prior to administering chemo. If counts were satisfactory then their in-house pharmacy prepared the infusion, and they were usually ready by the time my port was set up. I did not take steroids before and after until the 4th tx. I developed a rash after #3 and because they could not accurately attribute it to either chemo or the antibiotic for the UTI, I had to start the before, during and after Decadron. I started to swell after receiving the extra steroids so starting at #5 I was put on a diuretic, it was not Lasix but Triamterene (Dyrenium) to try to det rid of the edema. I think if you are drinking sufficiently (at least a gal. of fluid a day) you will naturally flush the Carboplatin out yourself. If you go down the Lasix road you may then need extra potassium. Believe me, the fewer things that have to be injected, or pills you have to take, the better! They should monitor your kidney function periodically throughout and a downward trend will show up - maybe they can hold off on the Lasix unless and until there is a demonstrated need.
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Lago - why the Zyrtec? Oh, and I already take Prilosec daily. He said we will see how my reflux does and will increase the dosage IF it worsens. I won't be surprised if it does as I've read about your experience and others with increased heartburn.
I'm happy my doc is splitting it into two days. DH won't have to come with me for the Herceptin only, so it will be less of a drain on him.
AmyIsStrong, thank you for sharing your experience and that all went well with the day before bloodwork routine. Oh and you make a very good point about not finding out until the day of that you may not be able to do chemo...I'm doing the cold caps and will be bringing 2 coolers full of dry ice, etc...that would majorly suck to do all that and then not be able to go forward with the treatment. Eeeks! So I guess that is a very good benefit to having to do it the day before!
My onc is also not doing the neulasta/neupogen shots unless my counts drop. The protocol from MD Anderson also says they don't do them unless a patient has an episode of neutropenic fever. It says on their protocol that this is NCCN guidelines. Sure hope I am like you Amy and don't get the fever/drop in counts!
SpecialK, thank you so much for the input on the Lasix. I agree with you...the less meds the fewer confounding factors...I will definitely be discussing this with my onc before my premeds are started!
Interesting that the inhouse pharmacy seems to mix up meds for all of you. I don't think my onc's office has an inhouse pharmacy. I suspect the onc nurse does this, but I am not sure. I am starting to obsess about people punching in the wrong numbers and giving me the wrong dose...so hard for me to trust since so many mistakes have been made in my case! This has only made my OCD over things being done right even worse.
I told myself not to freak over the 1% pneumothorax risk with the port...and then it happens to me. Uggh! 0 -
I am curious if the preparation of the drugs can be done by a nurse because it involves computation of dosing done by body mass, which I don't think nurses are licensed for. You should be weighed before each tx and the dose calculated on current body mass, so the drug prep may have to be done by a pharmacist, or licensed tech. I think that is why it often takes a long time to get the infusible drugs to the location of tx if there is no in-house pharmacist. That is also why they don't mix it until they get an all-clear on your CBC.
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My infusion center has an onsite lab and pharmacy. They had my weight WRONG on my last treatment...it was listed as 50 pounds heavier!!! The nurse caught it but still...at least I think she caught it before my drugs were mixed.
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Most people take Claritin. Claritin and Zyrtec are both antihistamines. I only had Benadryl with infusion. I think my onc wants her patients to experience as few SE as possible. I did get nuelasta from the get go. I was on Zyrtec the entire time.
The reason why they wait to make the drugs is if you are not cleared for chemo then they've wasted your chemo/herceptin. It's not like they know when your white counts will get better. I doubt they have to storage for pre made meds and you don't want mix ups. Chemo/herceptin is too costly to just toss if you don't use them that day.
SpecialK we did have a pharmacy right in the treatment center that specifically dealt with chemo. The pharmacy also gave me my emmend that day. I wouldn't take emmend until my onc cleared me for chemo. Since it took about an hour to make the chemo the timing was perfect.
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lago - that was the way my center did it as well, but they were pretty fast. CBC was done in 15 minutes while I was in with the MO, and my first infusion was Taxotere and it came by the time my pre-meds were finished, less than 30 minutes. The pharmacy was in a non-public area and the person who prepared everything came out to the nurse's station periodically to bring the meds out and chat with the nurses.
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I think the pharmacy is in a secluded area now. I was finished with chemo 2 weeks before the new center opened on a different floor. I got the rest of my herceptin in the new center. Because I went early to get herceptin it was pretty fast because I didn't have to see the onc or get blood tested. So while others waited to see the onc and blood test results their cocktails weren't being mixed. They had nothing else to do but mix the few herceptin only patients.
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SpecialK - I was wondering about that, too - but I just did a bit of googling and discovered that nurses can indeed mix chemo drugs per this document: American Society of Clinical Oncology / Oncology Nursing Society Chemotherapy Administration Safety Standards
Chemotherapy drugs (oral or parenteral) are prepared by a pharmacist, pharmacy technician, or nurse determined to be qualified according to the practice's policies, procedures, and/or guidelines.
I'm not sure that that provides me any additional comfort, though.
Dougieswife...OMG, that is unbelievably SCARY!!! My chemo nurse is gonna have his hands full with me. I told him that I need lots of hand holding. I doubt he fully comprehends what this means when it comes to me. LOL I wish I could just trust and not worry. However, that has not worked out too well for me so far.
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Lago, was your Zyrtec just for the neulesta? I'm thinking perhaps I'm not getting Zyrtec/Claritin b/c no Neulesta will be prescribed unless my counts drop. Oh, and I guess you are saying you took it by mouth, not in your IV premeds, right?
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Dancetrancer - I appreciate your fear, b/c of the mistakes you have been through. I hope I can write this in the right spirit and not be offensive. What I think you should do is carefuly craft your statement about your concerns so that you can express them to the nurses without making them defensive or looking like the dreaded "difficult patient." I KNOW that we are the patients and our care is paramount. (Trust me, I know that.) But they are human beings with their own feelings, and we want to treat them in such a way that we get our needs met even BETTER (if that makes sense). Once you are in the chemo room, you are under the care of the onc nurses. The doc is nowhere to be found. So whatever you said to him about needing hand holding has no bearing (at least that is my experience). So I would probably tell the nurse that you are really scared and hope she (he) understands and will walk you through things a step at a time. That way, they are on your side, rather than if you said you are afraid they will make a mistake with your drugs. I have read about women checking each IV bag of liquid to be sure it is the correct one for them, before it is hung on the pole. I did not do that, but you certainly could. Again, I would say something with a little light heartedness like "You can see I'm a nervous Nellie but I'd like to just take a quick look at that before you hook it up." Again, putting the 'blame' on yourself for being nervous rather than suspicion on them for possibly making an error.
Making friends and bonding with those nurses was, to me, a pivotal element of getting good care, and caring support during chemo. One nurse and I remain close and I stop by there to give her a hug (and bring cookies at Christmas) when I am there for a checkup. They are top level professionals and work very hard for us. Not that they can't make mistakes, and I GET you are scared. I just want to encourage you to prepare yourself to express your concerns the best way to get the results you want.
I hope so much this makes sense and I haven't offended you. I can feel the fear you have in the words you post here, and I want so much for you to have the best/safest/most secure experience possible.
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One more thing I want to say - one time when I was hooked up to the IV, I had to go to the bathroom (after drinking all that water). I walked (with the pole) to the bathroom and went. When I was getting up to wash my hands, I happened to glance at the tube that was connected to my port. It was filled with blood. I ALMOST FAINTED. I wanted to pull the emergency cord (that is in the bathroom) but I waited and opened the door and called for help.
Turns out that the IV bag had finished, and, when empty, the blood backfills into the tube from the port. Absolutely normal and no big deal. But it scared me to death. And the nurse that came to help me LAUGHED at me about it. It hurt my feelings terribly (even now, THREE years later as I write this, I can feel the hurt feelings all over again). I made sure in subsequent treatments, that I saw which nurses were working on which side of the room, and sat in an area AWAY from that nurse. And then (happily) she didn't work there very long.So there are some that are nicer/more helpful than others. And if your chemo room is set up like mine, where they work a certain area (like a waitress having her own 'station' of tables), then be sure to pick the side of the room where your 'favorite' one is.
Good luck to you Dancer. I know you are scared. We will be with you ever step of the way.
PS. I took a xanax the morning of the first chemo. Never did it after that, but it SURE DID HELP that first time!
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I have no idea what the Zyrtec was for. I know I once took Claritin for hives so I thought it might be to prevent some reaction like that. You don't need to take Claritin/Zyrtec continuously for Nuelasta.0
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Amy, thank you for that, I totally agree with everything you say! You did not offend me AT ALL! I am very worried about making the nurse think I do not trust him. I know how important it is to not be labeled the difficult patient (uggh). The chemo nurse is indeed the one that I spoke to about needing hand holding. I told him I was really scared. He was very, very nice when I talked with him, and he gave me lots of details and was very patient. I told him I am a worrier, type A, can't change my stripes (oh, how I've tried!), but that I feel more comfortable if everything is explained to me in detail. That is when he sat down with me and gave me all the details about the premeds, even the milligrams and cc's of saline they would be infused with! So I really can't complain, he was great at our first meeting yesterday. I am going to really sit down and think about what I am going to say on chemo day (when yeah...I'll probably check the bags, LOL!) to not make the nurse uncomfortable. Again, thank you for your insight and empathy - very much appreciated!
Maybe I'll bring donuts or something for the staff the first day so that they see I have a nice side that is not always so OCD. This cancer experience/the stress has brought this part of my personality out stronger, and I really don't like it. There is so much more to me than that.
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Amy, OMG, thanks for the heads up on the tube filling up with blood! That would definitely have been a freak-out moment for me, too! That nurse needs to learn a lesson in what it is like to be a scared patient. How insensitive!!!
Again, thank you and everyone else so much for your empathy. It helps me so much to express my fears freely and get it all out. I truly think expressing it all here, even the over-the-top fears that I couldn't share with my friends/family, will help me be calmer on chemo day.
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dance - I was a pain in the derriere patient but nice. I was very nervous every time. I had a little ativan in my premeds and that helped (me as well as the onc nurses - LOL!). I also wrote down the dose every time. My husband did it the first time and then I did it. You could just print out one of those sheets about your treatment and use filling that in as an excuse to check your bags. I think it's a good idea to check the bag and dose since they can get pretty busy in there and I had a nurse start to hang a premed bag for me when I was only getting herceptin. I was watching and asked what it was. I didn't have lasix - just drink a lot to flush it out would be best if possible.
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dance - the Claritin I took prior to Neulasta was by my suggestion to my MO, he ok'ed it. He was aware of the benefits, but did not volunteer the info to me - I learned about it on this site. I took it OTC at home an hour prior to Neulasta, it was not provided or prescribed by my MO. If you are not getting Neulasta preventively, then you should not need it. If your WBC drops and your MO decides you need Neulasta ask if you can take the Claritin on your own. It needs to be taken an hour prior to the injection - most likely you would be at home/work/en route, then at 24-hour intervals for several days afterward.
I was very fortunate that the vast majority of my onc nurses, and office staff, have themselves been cancer patients or had a loved one who was. They were all very sensitive and often got onto the arm of the recliners to snuggle and comfort someone who was having a tough day. They were all wonderful to all of us, encouraged laughter and jokes when it was appropriate, and knew how to calm and comfort when needed.
Forgot to add that Ativan was also available to me in pre-meds - but I had to REQUEST it if I wanted it. I only had it on tx#6 because DD was out of town, her precious doggy escaped 30 minutes before we had to leave for chemo, so DH was chasing the dog around and I had to leave without knowing whether he caught the dog. We have large ponds in my neighborhood and each has a resident alligator (yes, I live in a swamp!) and the dog loves to get in the water when you are trying to catch him. He thinks this is a game, apparently. During pre-meds I said "Ativan, please!" - my BP was a little high, lol! DH caught the naughty dog and showed up an hour later. All was well.
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SpecialK, thank you for the specifics on the timing with the Claritin. My onc did not suggest it either, but is ok with me doing it if I end up needing Neulasta. I have taken the generic version - loratadine - it comes in 5 mg and 10 mg versions. What mg is recommended for this purpose?
OMG about the dog/alligator story. Yeeeahhhhh....definitely would be requesting the Ativan on a day like that!!! Crazy dog!
I think the nurses at my onc's office will be great, too. At least that's my gut feeling that I've received so far upon my interaction with them. My onc is incredibly caring, calming, and patient with me. He always leans in to talk to me in a soft voice, and says "My dear, ..." etc., etc. You wait a long time to talk to him, but once you see him, he lets you ask as many questions as you like, and does not rush you along. He came to see me both mornings on the weekend when I was inpatient at the hospital for the collapsed lung, even though the surgeon was technically responsible for my care post the port insertion (she came to see me as well). He loves to talk in parables. When he encouraged me to stay an extra night in the hospital to be sure that I was progressing safely, he likened it to "not rushing the baking of the bread in the oven". He cracks me up.
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Get ready for a novel....I'll apologize in advance, for both the length and probably a bit of my attitude.
I'm reading all of the worries, freak out momments, the could have gone wrong, did go wrongs, etc...I'm pretty tweaked at the medical community right now. You know, we DO need our hands held...chances are, 1: We have never been through this before 2: Everything happens fast 3: We are scared out of our minds 4: We are just trying to take in all of this information to save our lives....and I could probably go on with this list, but I'll stop....
We are trusting these people to do follow proper protocol, be our advocates, and be on the lookout for mistakes. Now that I am finished with chemo, I'm looking back and feeling quite naive to the whole thing and questioning did someone mess up, was I too trusting, etc...
First...on my 2nd treatment, I had a reaction and my blood pressure shot up and then I freaked out so they gave me BP meds and ativan....Guess what then got put on my pre med list for the next time...BP meds and ativan. I know the next time, I did get the ativan and benadryl because I slept all day. This last time, the nurse wanted to give me the BP meds before...my BP was only like 100/60...I don't think I needed any (insert sarcasm).
When I went in on Monday for my fluids and then blood transfusion, my port started burning and itching...like I wanted to yank it out. My husband went and got the nurse and determined that I might be having a reaction to the tape (NICE)...but then follows it up with it could have been a reaction between the alcohol and the tape. All I know is that I have a nice peeling, scaby, burn where the tape was. Sorry, I always have a day where I get really sad, mad, depressed about a week after treatment, I guess this is it...
I don't know...all of this is just mind boggling to begin with. My whole story began with "just" a dry, cracked nipple. When my plastic surgeon looked at it, he was shocked. He told me..."If my own sister came to me with that, I would tell her to put cream on it" Then to hear from my BS that had I waited even one more month, I would have a very different outcome. Like I said...I'm just venting about all of this and maybe I have been just been holding all of this in for the last 6 months. Not sure if I feel better or worse....not sure if I could have even done anything different...but the fact remains...WE must be our own advocates and keep our eyes and ears open for anything that doesn't sound right, listen to our bodies and don't be afraid to speak up.
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dance - I would take the 10mg dose - more is better, don't think it matters if you use the generic. I used the kind that dissolves on the tongue - that way I didn't have to swallow another pill. Funny you mentioned your MO talking in parables - mine does too! When explaining chemo's effect on the body he said it is like "Someone shot you in the shoulder with a medium caliber handgun. Chemo is the bullet - it made a small hole going in but a large hole going out. It left a lot of internal wreckage along the way that you have to clean up for a while afterward." Another one he used referenced the WWII bombing of Europe. Bombs are chemo, we are the flattened cities! Nice that your MO came to check in on you - how are you feeling now?
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Just found out my mo doesn't start me on tamoxiphen till all the other treatments are finished. That means 6 weks of rads and 10 more herceptin infusions . Isn't that unusual?
There's always another friggin hurdle here....
TW..thx everyone for the calcium suggestions.0 -
SpecialK - I am feeling MUCH better, thank you! Each day I have more and more energy, and fewer "crackly" sounds in my chest when I breathe. I am definitely on the mend, thank God! It was a very scary experience, one which I never hope to repeat!
dougieswife, no need to apologize for anything. Being able to express exactly how we feel is so healing. And you are right...there is absolutely nothing wrong at all with needing our hands held. Thank you!!! I wish I had known more about port placement - that it is safer if done by interventional radiology (under fluoroscopic guidance), and also that the internal jugular is safer than the subclavian, b/c it is not hidden under the clavicle which results in a more blind approach. I am kicking myself now for not investigating it more...hence the reason I am investigating my chemo regimen to the "nth" degree.
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Ashla, it's not uncommon to not do tamoxifen while on rads. From my reading, the jury is still out, but, some feel that the incidence of fibrosis with rads (can't remember if is soft tissue fibrosis or lung fibrosis) is higher when tamoxifen is being taken concurrently. I was more comfortable not doing Tamox while on rads.
However, most oncs do start you on Tamox once you are past rads and chemo and on Herceptin only, so you may want to question your onc more on the why's of waiting regarding that.
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dancetracer...yeah, I had issues with my port, too. The surgeon couldn't get the juggular so they had to hit the subclavian.
I guess it just hit me at how little I do know, even when I feel like I did a lot of my own reading and research. I guess I just did it on the wrong stuff.
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dougie, it's like trying to get an advanced degree learning all of this crap! I'm in the medical field and thus understand the terms more quickly, yet I still feel overwhelmed trying to learn everything I feel I need to know to be an advocate for myself. I wish I could be one of those patients who doesn't worry and completely trusts the medical system, but that is not my personality and never will be. I think perhaps being in the medical field actually makes me question things more. I've seen mistakes made and covered up. It's a sad truth. At the same time, though, I've seen FANTASTIC medical professionals do an amazing job with their patients, going above and beyond. In general, I feel that the majority of medical professionals truly do care and are well-trained. Still, we are all human and humans make mistakes.0
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I think everything just kinda hit me all at once today...and like I said...this is my "upset" day. 7 days of not being able to take care of yourself wears on you. I hope tomorrow is better.
Truth be told..I am harboring a lot of anger towards "friends" right now, too. I have friends that would call, FB, or text me all the time before cancer and now nothing. One person, in particular, would call for photography/camera advice all the time and now nothing. The bad part about it...I KNOW she is a good person and I am sooo hurt by this. We live 8 hours apart and met on line while we were pg. with our little ones. I even drove 8 hours to meet up with her. Another friend always apologizes about how busy she is and how she hopes that if she were in my situation that she would have better friends than she has been to me. WHATEVER!!!!!
Man...I'm glad I have my therapy appointment next week!!!! I thought I was doing good...I guess not, LOL!!! Okay, I'm really done now!!!
Happy Thoughts....ready...GO......
The sun is shining, it's warm, and I have 3 sessions this weekend in the studio!!!!
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LoriI - I know what you mean, I had my upset days, too. I only have a few good friends and they all but vanished too. My very best friend finally made an appearance tx#5 after I semi-complained on my caringbridge site. I know it must be hard for them too...they don't know what to say, but seriously, we are the ones who are sick! I hope you start feeling better every day!
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Johns Hopkins has an Ask the Experts forum on breast cancer..
I asked my question about timing of tamoxiphen and here is the answer...
Asked Publicly Submitted Question 4/4/2012 I completed neo adjuvant TCH chemo in February for ER+PR- Her2 pos node neg IDC and had my lumpectomy 2 weeks ago. I am fortunate to have had a pCR to treatment and will starts rads as soon as my BS gives the go ahead. MY MO olans on prescribing tamoxiphen for me but only after all other treatments..radiation and 10 more herceptin ( every 3 weeks) infusions.
Is that standard treatment? I have read that many px take tamoxiphen during both rads and herceptin.Replied JHU's Breast Center Reply 4/4/2012 there hasn't been an exact and precise recommendation made as standard of care regarding the timing of tamoxifen other than it should happen post chemo if chemo is needed and post surgery unless being used as neoadjuvant treatment. some doctors will prescribe it during radiation but most do as you are describing and after all other treatments are done then give the patient the prescription for hormonal therapy. congrats on having your chemo work very very well for you! 0 -
Johns Hopkins has an Ask the Experts forum on breast cancer..
I asked my question about timing of tamoxiphen and here is the answer...
I completed neo adjuvant TCH chemo in February for ER+PR- Her2 pos node neg IDC and had my lumpectomy 2 weeks ago. I am fortunate to have had a pCR to treatment and will starts rads as soon as my BS gives the go ahead. MY MO olans on prescribing tamoxiphen for me but only after all other treatments..radiation and 10 more herceptin ( every 3 weeks) infusions.
Is that standard treatment? I have read that many px take tamoxiphen during both rads and herceptin.JHU's Breast Center Reply
there hasn't been an exact and precise recommendation made as standard of care regarding the timing of tamoxifen other than it should happen post chemo if chemo is needed and post surgery unless being used as neoadjuvant treatment. some doctors will prescribe it during radiation but most do as you are describing and after all other treatments are done then give the patient the prescription for hormonal therapy. congrats on having your chemo work very very well for you!
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