Taxotere, Carboplatin and Herceptin
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Aw Frosty1, my
goes out to you. You can do this! I am also in HR management and have managed to work full time through the entire process, since it reared it's little ugly head last June. I had one surgery on 7/1 and a second one on 7/31...then started TCH in late August. I finished the 6th tx in earlish December and then started Rads early Feb. I missed just under a week's worth or work (cumulatively) in the process. You can, too! Yes, the steriods do rip through your body...I had more of a problem with steroids, than anything else. My worst days post each treatment were always #'s 2-5... Treatment 4 was the worst "overall" in the feeling "blech" department, but treatment 6 made me the most nauseous (thank goodness for the Kytril samples the Onc gave me, that weren't covered under my plan). Hair loss that started around day 14 was no fun...like you, I wore a wig through the whole thing (grew to hate that darn wig, but, it was necessary for work). I have just gone "topless" in the last week and what an amazing thing it is! Having a supportive boss is very helpful; when your employer sees that you remain dedicated and devoted, you get even more support. It's a tough facade to maintain, but you can do it, and I believe it is helpful in the rebound process. Keep your hands clean (clean clean!) so that you don't catch anything because you don't want anything to delay your treatments (that you can control). My platelets were always borderline and I barely made it each time...I just kept going to bed as early as possible, eating healthy, drinking lots of water and did whatever I could to stay healthy. Hang in there...it seems like an eternity when you are in it, but it does pass.TrishK, thank you so much for your kind wishes (and recollection!!!). I am just a few months behind you and it's so exciting to hear you will be finishing up the big H!!! I have 5 months left of H...WOW! I cannot wait to get the nasty port out. Are you going to ask for it when they remove it so that you can smash and burn it?
I know that may sound gross, but I am going to (thanks to unkleswifeonty's suggestion! That's what she's going to do. LOL). I have never heard of Kangan water...I need to check that out.ccbaby: Cogratulations on your last H this week! Yay!!!!
CaliforniaCloud: Congrats to you, too! Deportation never sounded so good!
Best wishes to the rest of you!!
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sanaisa - I asked for my port. The doc said that he wasn't allowed to give it to me, but it was left in the room when I was changing (wink-wink) so I slipped it into a rubber glove and put it in my pocket. I am going to keep it, along with many other little trinkets from my cancer therapy.
Swampy - take care of yourself. I am sending you healing vibes.
Hearing changes - I would have never realized that my hearing changes were related to the chemo if I hadn't read it here. Thankfully, it seems like my hearing is back in order, but for a while there my husband had to spell out words for me to understand him. I thought it was just old age!
Here's to plenty of rest, laughter, and love.
Cheers!
Cloud
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Cloud - You are so sneaky:) LOL As for your hearing coming back, I am so happy to hear it! One of my Oncs said that hearing loss from chemo was irreversible. I know a couple of people that lost hearing in one ear from chemo and have to wear hearing aides. I am so glad to hear your hearing is coming back. Congratulations on the end of your cancer journey!
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CinCan: Hearing loss from chemo is more problematic for children. They are more prone to have permanent hearing loss, but it can happen with adults.
I am approaching the end of my journey. Originally diagnosed 3/31/09 with first TCH 4/14/09. This time a year ago I was clueless, innocent and a virgin in the cancer world. The gals on this forum have been such a help and offered so much encouragement. I hope the newbies will carry on the tradition.
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Swampy - Thanks for the info and a big HURRAY! on approaching the end of your journey. I hope you will continue to check up on us newbies.
To all you ladies that have "Graduated" from "Cancer School", please keep sharing all your knowledge and wisdom....it is so very much appreciated:)
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Cloud, Are you sure you're not related to my husband??? THat sounds EXACTLY like something he would do. I can't even begin to tell you about all the "trinkets" I find in my bag after hospital visits (especially after giving birth!) LOL! They almost all end up in the trash--I don't understand what he takes the stuff for.
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But you have to keep the little socks with the rubber soles. :-) Greatest invention since sliced bread.
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HA HA ! My Boyfriend took so many supplies from my hospital stay, we have more bath wipes, gloves, socks than i will ever use again in my lifetime! an entire cabinet in my bathroom is filled with the stuff! Our nurses just gave it to us. So funny!
SANASIA- You are local to me i think, i live in sherman oaks and work in woodland hills. I think i saw your profile said Woodland hills before right? Do you go to any support groups out here? PM me if you ever want to meet up!
I dont want my port, but i totally see how it would be nice to blow it up in a little kitchen science experiment, that little thing caused me so much discomfort for 2 months! Im too squemish to take it with me! LOL I am getting mine out when they do my last touch up surgery on my nipple in June. Very happy about that! Just in time for summer and tank tops!
And Yes, HEARTBURN was my constant companion during and for a couple months after chemo. I drink Alkaline water now and it has dissapeared. But during the Zantac helped me at night. Tums was worthless.
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Heartburn - I was so surprised to find out that what I was experiencing was acid reflux. I thought I was just nauseated. I don't really understand probiotics, but the gals that took them seemed to have a much easier time with stomach upset.
I was given a lot of different medications to remedy the acid reflux but it is nearly impossible for me to take a pill before I eat. I am not a planned eating kind of a gal--probably a good thing that I never had children! Anyway, I found, and still do find, relief with apple cider vinegar. Just a couple of teaspoons and I my stomach upset is gone. Purely anecdotal I'm sure because I also used it to make my shingle pain and itching go away. It has become a solution for all that ails me!
Nails - While I am on the subject of vinegar, I had great success with soaking my nails in white vinegar. Toward the end of chemo my nails were a mess. The tips of my nails were separating from the nail bed. My nails were really discolored and it all seemed so germy because I couldn't clean my nails properly--even though I kept them very short. My PA suggested soaking my nails in a mild bleach solution; it bleached the nails but the discoloration came back quickly. Then I tried soaking my nails in white vinegar and I saw an immediate improvement. My nail beds were no longer discolored and they gradually began to heal. Again, purely anecdotal, but it worked for me.
Keeping my port - I put so much trust in that little device that it just didn't feel right to throw it away. Today I took it out and looked at it closely. I was amazed to see the little puncture holes, one for each chemo treatment. My husband wanted to take it apart to check out the valve, but I wouldn't let him.
Cheers!
Cloud
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Hey all, so comforting to follow your paths! Frosty, that waiting/dread thing will probably accompany us the whole time. I was in good shape on day 2 of round 1, then got hit later with intestinal issues, pretty darn horrible But I'm here to report that the plan of action for round 2 has been effective. No appetite days 1-5, and some cramping last night, but not bad at all compared to what I went through before.
I'm not sure which of the following worked, but believe me, I'm doing them all every round from here on out. That means:
-- Healthy, balanced, fiber-rich diet the week before chemo round
-- Hydrating like mad days -1 through 4 (or beyond)
-- 2-3 Benefiber tablets with lots of water morning and night every day
-- Starting chemo day, switch to a bland, fiber-free diet. Eat every few hours even if I don't want to (and I NEVER thought I wouldn't want to eat!). Eat small amounts, and make sure to get protein (scrambled eggs are the perfect post-chemo food). Also eat the foods we normally should avoid, like white bread and white pasta and white rice. No vegetables! No beans! No whole grains! Drink small smoothies made with easily digestible fruit (no berries/seeds), yogurt, and maybe some protein powder. Have some jello or pudding.
-- I also added going to an acupuncturist (who I know and trust), taking his herbs, and taking some probiotics when I remember.
Three weeks ago tonight, I was doubled over in pain all day and night and was living on a few hundred calories a day for almost a week. Today I was tired (as much from lingering bronchitis as from the chemo) but able to work, and tonight I actually had an appetite and had some takeout Chinese noodles with chicken, and even a little bit of Pinot Noir, and watched a movie with my husband and felt pretty normal (except bald and metal-mouthed and tired).
Just sharing for those starting out, or anyone else who's had intestinal issues.
Now I feel like I can get through the rest. Only four to go!
Colleen
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I think the dread never goes away even if nothing changes or gets worse with each chemo. Everyone is so different and yet there are so many things that are the same. I have known some that breezed through chemo and in the years after nothing ever made them afraid they would get it again and then others who had problems with chemo and then got better after and nothing came back yet here I am after chemo which almost killed me and now I have to go to the surgeon again just over a year past my last TC and a few months past H to see if the lump that has been thought to be a fatty mass and nothing has started to change. It may be nothing and I hope I am not making any one worry about yourselves but just to say keep on top of things and don't just think it is over and you will go on with nothing ever coming back. It may never come back but you must keep on top of things yourself and not your doc. You know your body better than anyone else so be aware of your body and your blood counts and anything else. I know we have jobs and family etc to keep us busy but it only takes a minute to check for odd things while showering. Don't be afraid to ask questions and if you don't feel right about the answer keep asking.
have a good day and week everyone.
Carolyn
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yes the NAILS were a big issue. I am now about 7 months post tx and i still have just the tips of mine to grow out. when i read it takes about 8 months for your nails to grow out after chemo i didnt belive it but its just about right! I soaked mine in ice water during treatment but i didnt start that until the 4th treatment and i noticed it was a little too late. I almost lost one nail and the rest turned horrible colors and started to lift. now i have some tenderness with a few that are growing out and the tips are digging into the sides of my nail bed. OUCH! but they look like in a couple more weeks they will look totally normal again. Amazing how the body heals itself isnt it?0
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Wondering if anyone else is going through this. I have terrible chills ALL the time. Not shivering but just cold, like cold on the inside. If that makes any sense. I don't have a fever and I'm not running a temp. But I am cold!! I typically get the chills on the evening of my Herceptin and then again the next day. But for some reason following my last chemo 2/23, I became chilled and can't seem to get over it. Last week I had Herceptin and I am going in for another herceptin infusion tomorrow, so I can ask my chemo nurse about it. But truthfully wanted to know if anyone else is going through this?
Thanks for any info!
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I know that when I get the herceptin, after about 20 minutes of the drip, I feel cold and start to shake a bit. The first few times it happened, I got really scared and that made me shake even more. But now I just ignore it and it goes away.
That being said, I feel like I am colder than I have ever been! This winter was brutal for me. I feel like I wasn't warm for MONTHS. Even with the hot flashes, I would have one, get sweaty, then feel cold, clammy and chilled right afterwards. I say "I am cold even when I am hot." I don't know if it is the herceptin, or hormonal changes or what. But I am SOOO ready for spring.
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LAST MUGA SCAN this morning.
So today was my last MUGA scan - one of the most hated parts of treatment for me. From the very first one, they had trouble finding the vein, getting the tracer reinjected, etc etc. Always stressful and painful, and usually tears involved. (They won't use the port.)
So I don't know if I'm just saturated from the whole year of treatment or what, but today I just walked in and stuck my arm out and just let them do it. No fear, no prep, no reaction. I still didn't like it (!!!) but I jjust tolerated it without the 'fear factor' that I've always had. The tech that always takes care of me said I did "exponentially better" this time.So if I do the Neratinib trial (which I am hoping to), I will need MUGAs for another year. At least I have gotten used to them for the most part. Progress, I guess.
So next Thurs is my next-to-last Herceptin and then I finish up on 4/8. Can't believe it!
Going for another trim/shaping of my hair on Wednesday. I look like I have a bushy 'fro. But I hate to cut it because it seems like going in the wrong direction. I'll try to post a pic soon.
Love you all! Keep strong.
Amy
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Amy, I am like you not wanting to trim my hair but with all this wet weather my hair gets out of control. I have used conditioner but I hate to put too much product on my hair. I still have a problem with smells at times and I can smell the stuff all day.
I am always cold too but it has been a cold winter. I am also anemic so I figured that is why I am cold but then I realized a lot of women are cold natured. In fact I work with one that needs it warmer than I do. I then sweat and get chilled again. No happy medium. I think our bodies are still traumatized too from the poison we got so maybe it will relax and let us get back to normal?
My fingernails did good all through chemo but now they are dry and breaking. I think part of it is the cold weather and always washing to stay away from germs. I use stuff on my fingers to keep them in good shape but still have some problems. You finger nails are protein so I guess we must process protein to get hair and nails that look like they used to.
Carolyn
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I am always freezing one moment and cannot do anything to get warm. then the next i am stripping off layers because i am having a hot flash that last about 5 min only to go right back to freezing again. i do notice i get cold after or during H. always asking for a warm blanket.
I just figured it is the tamoxifen that i am taking. but the chemo-pause hot flashes really were brutal during the summer! ugh!
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JustSher--I had those episodes of coldness during my TCH treatments! I could not warm up no matter what I did! I felt just like you described-cold from the inside! Usually, when I took my temp during one of these episodes, it was low, like around 96 degrees. I never did figure out what caused them, but sometimes they would last 6-8 hours at a time. Now that chemo is over, the episodes are no longer coming and going. Now I'm back to being on the cold side like usual ( but not that weird inside cold feeling) but I've always been a person who gets cold when eveyrone else is comfortable. I'm back to being cold until the next hot flash hits--then it's back to cold again. But like I said, being on the cold side is more my usual.
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TrishK I am like that too about the cold one minute and hot the next, mostly at night when I'm sleeping. The covers go on and off every few minutes it seems.
I went into PS today for my expander fills and it seems as though I have a leak in one of them. He has put way more saline in that side and it never stays. So looks like I'm off to surgery # 6 to get it replaced....... Its ALWAYS something!!!!!!!
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Oh no Cakelady! I hate to hear about that! When is your surgery?
I still am having those chemo pause hot flashes and have not had a period for almost a year now. I am not able to take Tamoxifen since I am ER- PR-, so I can't blame it on that.
I am in NOLA right now and will have my stage 2 reconstruction surgery tomorrow. Hopefully this will be my last surgery FOREVER!
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WooHoo, ccbaby!!! You Go girl!! Good luck for tomorrow!
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ccbaby I am happy for you and I do hope you never have any kind of surgery again.
cakelady, I am sorry but I was wondering if it is your right side and maybe you are right handed? Anyway just a thought but I do notice being right handed I tend to hurt that side most of the time. I had surgery on the left side and it is giving me fits today but I think the weather and arthritis is the reason for that. I don't think the weather has anything to do with your problem
I blame the weather for a lot of things.Carolyn
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Awwwh....Cakelady, I am sooo... sorry you are off to another surgery:-( Do you look at your PMs...I sent you a PM over a week ago? Hang in there like you always have.... my thoughts and prayers are with you.
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So sorry about more complications, Cakelady. I know the feeling well of "it never seems to end."
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Well - the fun on TCH never seems to end for me.
Just finishing up 48 hours of wearing a Holter heart monitor. Seems sometime after TCH # 2 I starting hearing my pulse in my left ear. Most noticable at night when I am trying to sleep. Some nights it was really loud. It went away about 2 days before # 3, but shortly after # 3 it came right back. Given the Hercerptin, and the heart issue I already have, cardio doc is having my wear this monitor just to make sure everything is ok. Not really a big deal except no showering for 48 hours. I have like 5 leads on various part of my body, and count clock around my shoulder.
Did anyone else every experience this weird pulse in the ear thing? It is only my left ear. Ialso have the ear ringing on top of that. Wonder what else will happen after # 4 next week.
Also - for those on Herceptin only now with a Port. Can you travel - like fly on an airplane? I mean are you well enough in between H only to do this? My DH is trying to plan a trip for later this year when I am on only the H, and I haven't had a chance to ask my Dr's yet.
Also - what type of pre and post meds do you get for Herceptin only? I assume still the benedrly, but what about all the wonder anti-nausea stuff since this isn't Chemo anymore.
Thanks
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Christy, GOOD LUCK GIRL, you are almost done! Finally! i know it has been a loooooong road for you with all the complications. Stage 2 is a piece of cake!
Wendy- sorry to hear about your added surgery. I had to have an extra surgery as well. My nipple recon was supposed to be it for me but i need ONE more because it is too big compared to my real nipple. I look like a cyclopse! So in June he will fix it and take my port out at once!
ST CARDS FAN- YES you can travel when only on Herceptin. I just went to Idaho and my port didnt even trigger the scanners in security! I have no issues with herceptin and travel. My doc told me to travel to my hearts content. Its good for us to get back to as much "normal" life as we can.
As for the ear thing, i remember my pulse in my ear too. I was so worried about my heart i had another ekg as well as a MUGA and i was fine. Just rapid heart rate from fatigue. Felt like my heart was going to explode! Hang in there it will go away in a few weeks. mine took 6 weeks after treatment to finally start to go back to a normal heart rate. My resting rate was about 105 after chemo and now it is back to 65. My last MUGA was last week and came back normal. Thank the lord!!!
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Hi stlcardsfan-
I have Herceptin weekly right now. Once I am done with chemo, I will have it every 3 weeks. As far as meds to prepare for the Herceptin, they don't have me on anything. No steriods, benadryl, anti-nausea, nothing and I have come through it just fine.
The side effects that I deal with are super bad chills on the night and day after Herceptin. I have also had a constant runny nose.
When I am receiving the Herceptin I get a nasty taste in my mouth, but have found that drinking cranberry juice with ice, lessens the bad taste.
The herceptin infusion goes quick right now. Not sure if it will be longer once I am going in every three weeks instead of weekly. When I get in they flush my port for about 10 minutes, then hook up the herceptin bag (about 30 minutes), 10 more minutes of flushing and then a heparin dose in my port and I am good to go!
Usually feel good enough to run errands, or head into work or something active.
Let me know how it goes for you!
friscosmom- still sending positive thoughts your way!
Paxton - sending you positive thoughts too!
Hang in there ladies -
Remember, we can almost see the light at the end of the tunnel and its NOT an oncoming train!!
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Trish K and Just-Sher
thanks for the feedback.
TrishK - I feel the same way - rapid or should say loud heart beat etc right after chemo. I mean more rapid that it was before all this started. I used to be a runner in high school, long distance, and have always been very active. I have a home heart pulse checker and was amazed at how high it went the few days following chemo. But is goes right back down a few days later. Thanks also for the travel tip.
Just-Sher - stil have 3 more TCH's before I go to just Hercerptin. Surgery sometime after Chemo is done too. Think they were going to give my 4 weeks to get the Chemo out of my body, before surgery.
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Stlcardsfan- I did mine just the opposite. Surgery first and then chemo. They originally thought that I had DCIS, but once they got in there they realized that it went invasive - thus the chemo! I also started recon at the same time. I should be having my exchange surgery sometime May or June. I am thinking that I am going to wait until June, so that I can get back some volunteering or teacher-aide subbing at my kids school.
Don't you have JUST herceptin on your non-chemo weeks? My schedule has been a TCH week then a herceptin week, another herceptin week and then back to TCH. So I have been having infusion of some sort every week since January 12th. My bilat mast was Dec 2.
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Christy----- I go in next week to make sure the expander has leaked out all the way again, which I'm sure it has, then he will schedule me for sometime in april, because I have a trip planned the first week of April, so he doesnt want to do it before my trip in case of complications afterward. I'm flying to Seattle to see my hubby, who is working there. (long story). Do expanders set off the sensors at the airport? anyone know? I'm on Tamoxifen now, and do have the same type of hot flashes I had in chemopause, but no other effects. Ahh, but no period . I had gone since last April with now period, then had one in January, then went on Tamoxifen, and have not has another one. Wierd.
Gramma--- thanks gramma, yes I am right handed, and it is the right expander, but I didn't hurt it. I am pretty sure the doctor did it when I went in once for the fills, only my 2nd fill, he could not find the port and he poked 3 times and missed, so he must have put holes in it.. He even admitted it may have been him that did it.
CinCan---- yes sorry I don't ever see the PM's, cause I never think anyone will PM me! ha ha but I did get yours just now before I started reading to catch up for the day. thanks. we will figure out a time to meet up.
Weety, thanks ya it never seems to go totally easy without a hitch!
TrishK--Thats an idea, I wonder if my PS can take out my port when he does my surgery. I will be done with Herceptin by then. But I'm always afraid if I take it out too soon that I will need it again. There I go with that negative thinking.
Stlcardsfan-- Yes you can travel, and H only doesnt seem to make anyone sick. I feel fine after, and I don't get any premeds.
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