Taxotere, Carboplatin and Herceptin
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AmyIsStrong - congrats on your five yrs!!!
Ladies, what exactly does gynecologist do? sorry if this is a dump question to you ladies?
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Soriya - I've always gone to my Gyn doc instead of a PCP. She did yearly pap smear before my hysterectomy, now does visual check. She makes sure there are no problems or need for lubrication, etc if you're sexually active. She checks breasts & does scans to check bone density at hip & spine. BTW - she called me several times when I was recovering from BMX and actually showed up at the hospital just to make sure I was doing OK. And I've used her to recommend all my other docs since I trust her. Lovely lady.
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minus - what a nice doc to check on you! I had my last PAP right before exchange and I had a new nurse practitioner. She discussed exchange surgery with me, as she had a BMX and silicone implants, and she ordered physical therapy for me without me having to ask - she said I would need it and she was correct. Then she asked me if I wanted to feel her implants - I paused a second because I felt a smidge of awkwardness since I didn't know her - then I thought what the hell, I am curious! All of us who have been through this really are sisters!
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Minus two, I always go to PCP for pap smear. Good to kno this. Do i need to get a referral from my MO to see Gyn? GYN is not the same as OBGYN right? seems like you have very good n caring GYN Dr.
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Hi again!
Minus, your gyn sounds a lot like mine - she actually called me right after she was notified of my diagnosis to let me know that she was there for me and that if I needed to talk to her about anything, she was all ears :-) I generally go to her instead of to my internist for my annual checkups, because she gives me the PAP, the CBE, checks vitals, and would do any kind of bloodwork we thought I might need. Not to knock my internist (who is also terrific), but I just feel as though my gyn has more of a personal approach. My insurance company has always treated gyns as PCPs, so they were fine with me using her for my annual. Soriya, you might want to check with your insurance company to see if they treat gyns the same as PCPs, too. My gyn also orders things like bone density tests for me.
Amy, I hope you can find a provider who will help you bridge the gap over the year. I'm annoyed for you that your gyn released you for any reason, because it's not as though you stopped being a woman after your hyst, you know? I should also mention that my younger sister was diagnosed with Stage IV bc from the start in January 2011, so I've had a front-row view of what these early days are like. That's made it a lot easier for me to digest my own diagnosis, and my attitude is pretty much that finding your disease is the very first step to getting rid of it. To be honest, I live in constant awe of my baby sister and the way she strives to make every day full of possibilities instead of full of despair or worry. She's totally my hero - I hope I can come close to living up to the standards she's set!
I do have another question for you ladies: I know that the first TCH is a long day due to the loading doses and whatnot, but can any of you share with me how long subsequent visits are? I've met with one MO and will meet with a second next week before making my decision on who will manage my case, but either way, I'm sure I'll be in for 6xTCH, and I want to try to figure out what my infusion days will be like from here on out so I can get coverage for my son if I won't be home on time to get him off the school bus.
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nina - so sorry that your family is dealing with another BC Dx - that has to be very hard. Not every center works the same way but for me each tx was a long day. I had a CBC first and vital signs, so that they could know what my counts looked like and see if they were high enough for treatment. I was also weighed so that the pharmacist (ours was in-house) could make up the drugs. They are done real time, nothing is pre-mixed because the dosing is dependent on BSA (Body Surface Area) so if you gain or lose weight during treatment things are adjusted. While waiting for the CBC to be completed - 10 or 15 minutes - I saw my oncologist. We discussed any side effects and I had a brief physical exam to check for swelling, check mouth, etc. After that I went back to the infusion area and had my port accessed. Pre-meds took about 30 minutes and, for me, were Aloxi, Benadryl, Decadron and Tylenol, but they can be a bit different for each person. I iced my hands and feet during the Taxotere portion to try to protect my nails, so I started icing at the end of pre-meds. I received my drugs in order T, then C, then H. The Taxotere took about an hour to administer, the Carboplatin about 45-60 minutes, and the Herceptin 90 minutes. Then the port was de-accessed and I was done. I usually arrived at about 8:30 a.m. and was done by late afternoon - usually by 4-ish, but sometimes later if there were any delays. This didn't change during the entire 6 treatments - my infusions were never sped up. I received Neulasta 24 hours after each tx so I did go back the next day for that.
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Nina W - Mine was a little of a different schedule than SpecialK's. I had my blood work and onc check-in the day PRIOR to my TCH. I liked it a lot that way, as I knew what to expect, and when I showed up for treatment, I just was weighed, bp and temp, and then ready to go. I got the premeds, then T, C, and H (in that order) and was there from probably 9-2 or so. BUT I have read on here, and experienced myself that they can be busy, and you have to wait, either for a chair, or to have a bag changed, or whatever and it CAN take longer. I would have been VERY tense and nervous if I was on a timeline or felt rushed to get a child from the bus. For you and your child's sake, please make other arrangements so that you can relax (and doze off from the benadryl) and not feel rushed or pressed or anxious. Treatment is stressful enough.
Plus if you get benadryl, like I did (and everyone I know did), you are not supposed to drive to/from anyway, so you will need a ride.
Now when you get done the 6 tch, and are on the H-only part, that is MUCH easier and faster. They ran mine at 90 min, and I would say I was there just around 2 hours start-finish. I declined the benadryl at that point (knowing that i was not allergic to it by then) so I could drive myself. I would go in, get it done, and then just go about my day. Compared to TCH, it was awesome. Hope this helps.
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SpecialK - thank you SO much for this comprehensive explanation! Oy, sounds as though every infusion day is a marathon. Time to sweet-talk my friends around here into hosting my child for a few hours that afternoon :-)
Thank you also for your kind words about the challenges my family has been facing. Neither my sister nor I are BRCA-positive, so either there's some genetic link the researchers haven't yet discovered, or we're experiencing a really epic, soap-opera-level run of rotten luck. I often think that I'd happily take a little more cancer if it meant that my sister had a little less, because it's so awful to me that she has to bear the tremendous burden of her diagnosis while I "escape" with a stage that's infinitely easier to treat. Then I remind myself that the cancer game offers no iron-clad guarantees to any of us about ANYTHING, and that there are plenty of late-stagers who go on to live for decades while some early-stagers experience an aggressive recurrence that takes them. Ultimately, the best any of us can do is to remain vigilant and flexible, and to hope that science makes the critical advances just when we need it to. And to make the best use of our time by appreciating the hell out of every minute of it!
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nina - you are so right about the mysteries of cancer - I lost both my dad and brother to stage IV cancer of different kinds within the few years before my diagnosis - my brother just a few years older than me and diagnosed with a rare and untreatable cancer. Between their loss, I also lost my mom to a long and debilitating degenerative neuromuscular illness. Both of my parents were elderly so their passing was to be expected, but my brother's was a shock. I had survivor's guilt to say the least, and struggled early on in my diagnosis to understand why I had seemingly been spared but he was not.
On the topic of the long infusion day - think of it as six mini-marathons, and tackle them individually! It can be a bit overwhelming thinking of it as a whole, but I have learned that you can't plan too far ahead, something always changes!
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Hey Amy! Thanks so much for the rundown on your infusion days. I can't tell you how helpful it is to hear these different accounts of how it goes. The first MO I met with insists on doing his infusions in his office instead of at the (infinitely more convenient to me) spacious, comfy cancer center in the hospital. If I end up going with him, I'm sure I'll be in for loads of delays, because that office is insanely busy and he's one of those doctors who wants his patients right under his nose so he can constantly monitor their reactions. I guess they don't want him parking himself at the hospital cancer center all day and annoying the nurses he doesn't actually pay :-)
Did you take Claritin in addition to the benadryl? I love the idea of doing all the bloods the day before, because it seems nutty to me that you have to wait around for lab reports on infusion day when your bw isn't likely to change that drastically within 24 hours.
My son is turning 12 in April. He usually has a crazy schedule with either baseball or basketball practices depending on the season, so I'm definitely going to have to spend some time thinking about which day is best for infusions. He can certainly hang out at home by himself if I'll only be an hour or two later than his arrival, but I think you're right and that I'll be much calmer knowing he's got a pair of adult eyes watching him until I can get my own eyes on him!
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nina - I know that my center did my CBC within 10 minutes and I was already in the room with the doc while that was happening so it presented no delay. They may want to do your CBC same day as your platelet levels can fluctuate pretty significantly day to day - if they are too low for chemo this can cause internal bleeding, so it is important to know their current status. Many of us took Claritin to alleviate pain from the Neulasta injection - some start the day before, but I took it an hour prior to the injection and for several days following. The drug is thought to work on the discomfort by helping control the edema in the bone marrow as it produces extra white cells. When deciding on which day to do your infusions keep in mind that days 3-5 are usually the ones you feel the worst so it might be a good idea to track back to when you will be needed most in your son's schedule.
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Hello, I will have my first TCH tomorrow, and from them on every 3 weeks. I am a bit scared, but am now taking Decadron, will get a Neulasta shot the day after tomorrow (with Claritin on the side, starting tomorrow) and have Zofran, Emla cream etc ready to go. It is very helpful to read all your posts, thanks so much. I truly hope for less than terrible side effects- I am 43 and healthy otherwise, not sure if that counts for anything ...
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summer - I would encourage you to ice your hands and feet during your Taxotere, it may prevent SE associated with your nails. I brought 4 bags of frozen peas in a cooler - it was easy and I didn't have discolored nails or ridges or white lines. I did have a nail lift, but it had been injured prior to chemo. The others looked great throughout. Good luck - I am sure you are nervous, but I found that the anticipation was worse than the event!
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Nina: I had my blood drawn on Monday afternoons & saw the MO an hour later for my pre-chemo visit to ask all my questions and discuss SEs. I had chemo on Wednesday. If I'd had to wait for blood draws the morning of chemo, it would have added a full hour before starting. I started right at 7:30am and often was still there at 4pm. I did have Perjeta in addition to the TCH (another hour) and I usually requested an extra liter of fluid since I couldn't seem to drink enough liquid. My order was Herceptin, Perjeta, Kytril, Taxotere, Carboplatin - with Saline at the start and end. Herceptin & Taxotere were each 90 minutes. Perjeta & Carboplatin were each 60 minutes. A full liter of saline takes about 2 hours to run since my center never does over 550 ml/hour.
The infusion nurses added Benedryl & Tylanol only the first time in case of reaction, but they always added Kytril for nausea. I took Decadron pills (steroids) 2 the day before, 2 the day of treatment & 2 the day after treatment. I also went in for a Neulasta shot 24 hours after finishing my last infusion. You do want to take Claretin as Special K suggests. Also it's worth icing your nails during Taxotere. (I used frozen peas - easier than ice cubes)
You didn't say which MO you decided to go with. I liked the hospital/clinic setting for treatment. The nurses had lots of experience and the doc generally just wandered through one time. You could visit with the other folks getting infusions or read or sleep - your choice.
Amyls is right. You need to be focused on you & on relaxing and not worrying about running to meet a bus. Hope you have friends who will watch your son.
Summerwheat: Wishing you the best for your first day. Our thoughts will be with you. It's always hard to face something new for the first time.
Special: So sorry to hear all you went through with your brother, Dad and then your Mother. I can understand the survivor's guilt. That's rough. Count down - one week to surgery!!
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minus - thanks for the kind thoughts - it was definitely a rough time. I felt horrible telling my SIL about my diagnosis, she had often said I was her only link to the childhood memories of my brother - her husband. She was pretty shellshocked, but found her footing after a bit. She had also lost her dad just a few months before the loss of my brother, so she had a lot to handle. On the countdown to surgery front, today I cleanied out drawers and have gone through the hanging stuff in the closet to weed out stuff. I do this every time, it is comical!
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Special - I used get ready by cooking things & freezing in smaller portions for future use. Not doing that anymore since I recently threw most out the stuff I froze a year ago due to taste bud defects. I need to clean my closets but have put that on hold. Who knows what size I'll be in 6 months.
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minus - I am going to have to cook ahead - actually my DD will be home that weekend (surgery on Fri) and is bringing a few people who are fishing a tournament with her, so I will have some guests Thurs and Fri morning only. The stuff I got rid of out of the closet is stuff that my chest will never fit into again regardless of how much I weigh!
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Thank you for the advice, neither the MO not the infusion nurse to whom I talked today mentioned the ice- I will ask if that's okay with them, too late for tomorrow, perhaps for the second time. A friend suggested to apply Sally Hansen Tough as Nails as well, I am doing that now. The decadron is making me feel a bit weird ... Hope I can sleep.
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summrrwheat. You'll do fine. You may be up during the steroid phase. It's easier to handle if you go with the flow. There's an insomnia thread if you need company!
My infusion day started usually at 10:45. I would get my port accessed and full blood work. Then I'd see my MO. Then go to infusion. Wait for results of the blood test. While waiting the onco nurse would ask the list of questions about eating drinking problems etc. Of course I'd tell her about the D that hit on day 5 etc. Then infusions would start. I always asked for an extra bag of fluid as the D made me not able to keep up. I was usually done around 4:30 - 5:00 . One of the other reasons (besides weight etc) they don't mix up your chemo till you get there is the cost. It's like 10,000$ each time so they want to be sure you use it.
Also those who iced had to start right away to get all the benefits. But better late than never. I just kept breaking my nails for months after. I did not ice.
SpecialK keep cleaning. It's good to know it's done.y DH is the ocd person. So he would bring down the closet contents. I would say keep give away or toss. He did that for almost every closet in the house. Not at the same time though. But it does feel good to have it done.
Nina, I think with all the uncertainty you should have someone cover for your infusion days. Sometimes they get backed up. Our MO is AT the cancer center so that made it easier.
Much love to all.
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You ladies are awesome - thank you SO much for all of this feedback and insight! I'm insanely lucky in that I have lots of offers from people to help out with my son, so I'll make sure he's occupied on infusion days and I'll have people on standby for the week thereafter in case I'm just not up to doing much due to SE. I will say that my initial knee-jerk instinct was to tell as few people about my diagnosis as possible, because nobody wants that "pity stare" and the constant "how are you?" questions. While that's a drag, the flip side is that telling people means you can cash in all of those karma chips you've earned over the years, and you have all the extra hands you could possibly use.
Minus, I haven't made a final decision on which MO I'm going to work with. I have a meeting with one at MSKCC this coming Thursday, and then I'll pick one and join Camp Chemo. I really, really liked the first MO, but most confess that the thought of getting treatment in his office as opposed to the big, comfy cancer center is disappointing. I have to keep reminding myself that while it's nice to be comfy, the most important thing is to go with whomever inspires my trust and confidence the most, and that really none of this is very comfy at all in the final analysis :-) The only real concern I have is that if I have an extreme reaction to something, the cancer center is attached to the hospital, while the MO's office is in an office building, so I'd need to be transported somewhere if something happens when I'm with him.
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Nina, first off, I have to say that if you are even 1/4 as together as you sound in your posts, you are doing awesome at handling this. I found the stage you are in - making decisions re chemo- so hard!
On nails: I am only 2/3 through TCH, so take this FWIW. I have been using something called "Complete Care" from Sally Hansen on my hands. I went looking for Hard as Nails, and bought "Complete Care" since it was the most expensive, so I figured the best. Anyway, my nails are in really good shape. MO comments every time I see her. I have also been religiously moisturizing both hands and feet and using cuticle massage cream on finger and toenails. I have not been icing during T.
On chemo experience: I had my first 3 infusions (chemo plus first 2 H-only) in the hospital, and all the rest since then at my MO office. I found that the hospital was slower - you have to register, it was more bureaucratic. The first chemo took longer anyway (because they give you the H more slowly to watch your reaction) but even with that it was a longer day in the hospital. It was more comfortable since I got a private room with chair/couch for your DH or friends and TV. My experience with chemo in my MO's office is that it goes much quicker than it has for others. I typically go in at 10, and am out by 2:30 - and I have a Dr consult, get a CBC, and chemo all during that timeframe. The MO office is one open infusion room, and sometimes feels kind of crowded. But, I find it's okay, and the nurses in my MO office are great. (I was actually not so impressed with the hospital nurses - I still have a healing wound from where the nurse pulled off my port dressing to give me chemo - it was a bleeding mess for days - worse than the port scar! - and is still very visible 2 months later).
summerwheat, hope that it is going as okay as possible so far . . .
I am on Day 9 of chemo #4. This has been a hard one. Mouth issues back with a vengeance this time. MO had given me samples of something called GelClair to try - they actually worked pretty well (I cannot tolerate the Magic Mouthwash) and I had MO call in a prescription. Only to discover that it's apparently impossible to get it filled! I've tried 2 pharmacies and no doing. So, I'm back to salt/soda water rinse and waiting for it clear. My tongue feels furry and swollen and it's a total mystery what to eat. Still drinking peach nectar. That still tastes & feels good! Last time I turned the corner on Day 11 - I'm prepared for it to take longer this time. Boy am I impatient though. Ready to feel better!
Oh, and to add insult to injury, my eyelashes have started to fall out. I had hoped to keep them, especially since I still have peach fuzz hair on my head.
On the plus side, I got more great news from MO yesterday. She says (from clinical exam) that she does not think there is a mass anymore, and that she think BS estimate of tumor size (which was 50% smaller than from start of chemo) is too large. She thinks that the mass has broken up (this is one additional chemo & 2 H later) and that I am going to have an "excellent" result. woo hoo
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oranje - can you try just straight Nystatin mouthwash? For mouth sores I used a Rx called Caphosol.
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specialK, yes, I am going to try that. Actually my dr called in a prescription for the Magic Mouthwash minus the lidocaine. I just can't stand the lidocaine - made me gag and feel like my throat was swelling/closing. we'll see how this substitute does.
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Second round of THC last Friday. How long did it take to be able to taste again. It seems the only things I can taste are ketchup, onions and chocolate.
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It took me about three weeks after the last chemo to get my taste back.
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Orange I hope you get something go help pretty soon.
DD I usually got my taste buds back about a week before I had to get my next tx. And I could not stand vinegar so ketchup was yuck. But a bit of citrus was ok. Lemon or orange.
SDB how rads going- I hope you are doing ok.
Much love to all.
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Moon, thanks for asking. I skipped today due to weather. Our freeways were a mess today. I've completed four this week. So far, so good. A little sore and fatigued, but not too bad.
orange, good luck with the mouth sores. That's one SE I didn't get. I used biotene toothpaste, gently flossed three times a day, and kept a bottle of water with me at all times, keeping my mouth moist. I had a prescription for mouthwash, but never had to use it.
summer, I also used Sally Hansen Hard as Nails and didn't have nail problems. I kept my finger nails really short. After chemo I developed a slight difference in color when the new growth came in, but only I could notice the difference.
Hang in there, it will be over before you know it!
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For those of you who have finished treatment, how long did it take for your hair to start growing back and make a noticable difference? My last TCH treatment was 5 weeks ago.
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Flowergirl - Seems like everyone is different. There's a BCO thread with lots of responses and pictures that you may want to check out - Hair, hair, hair. The link is below.
http://community.breastcancer.org/forum/69/topic/7...
Ddgm - I never got my taste buds back between chemo treatments. Now I'm 11 weeks PFC and still have lot of taste issues. I'm not expecting too much improvement since I'll be on Herceptin for a year.
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Flowergirl - I forgot that Lago has posted a wonderful link with pictures of hair growth all along the way on this thread too. Unfortunately I'm not computer literate enough to know how to find the link. I'm sure she'll come along and post it again for you.
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