Taxotere, Carboplatin and Herceptin
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Hi Ladies- just checking in- haven't written in awhile. I think last time I might have written on the starting chemo in June forum, but I really need to hear from you guys in the TCH/her2+ club.
Today is day 12 after chemo #1. I did pretty well, I guess. First three days were terrible- in bed the whole time, then started feeling a bit better and getting up and around. Day 8 I noticed a tiny little white spot in the corner of my eye. Called doc on call for antibiotics and eye drops. Day 9 felt a little worse but still went out on the boat with some friends. (Me just sitting in a chair watching everyone) By 1:30 pm I started crashing and by the time I got home, I was shivering uncontrollably and alternately sweating. I had a 102.7 fever and I never get fevers! I don't think I've ever had one that bad. On call doc told me to go to the ER. I couldn't imagine going there when I felt so bad! Finally got my onc on the phone- it was a Sunday so I'm sure he had better things to do , but oh well. He gave me stronger antiBs told me NOT to go to the ER, take naproxen AND tylenol and drink tons of liquids. Sure enough, it came down and was 99 by the next morning. So now I'm starting to feel better again. What a roller coaster! And with no immunity the littlest thing can do you in! I have been washing my hands like a madman, but I guess I touched my eye at some point and that was it. Ugh.
I still have my hair but I know I only have a couple more days... So scary. I know I am going to be so sad when it happens. I have an appt. for a shave and to get my wig put on and styled... I think I'll feel like an imposter wearing a wig but I don't want to get stared at.
There was an older post that scared me about taxotere and permanent hair loss. Can anyone who used taxotere and had their hair come back please let us all know!
I started freaking out and between heart damage and permanent hair loss I felt like I'd rather take my chances with cancer sometimes. It's almost like you need a mathmetician to tell you what to do: you have a 12% chance of cancer recurrence with chemo and a 20% chance without, plus factor in up to 10% risk of heart failure and 6% permanent hair loss, then factor in your quality of life coefficient... you need to do THIS.
Anyone ever think of giving up? Not to be flippant about it. I know I am lucky compared to many- I had no lymph nodes and clear margins so chemo is just to get any sneaky little cells which may be lurking somewhere. But there may not be ANY. And I guess there's' no way to tell unless it gets to be a tumor. If someone could just invent a way to see if someone had any of those shed cancer cells. Imagine how great it would be if you didn't have to take chemo unless and until you really needed it. So much progress has been made, but so much still to be done.
Further info on my fam history, so you know where I'm coming from: mother, father, brother, and uncle all died of different types of cancer. All had mets before they caught it so chemo was a last effort. Definitely needed, but I saw the toll it took. It's a scary place we are all traveling through.
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I finished my chemo back in November of last year and I first really noticed the hair coming back in January. It's growing slowly and only around 1-2 inches (not evenly) but I have full coverage and could go out with it uncovered if I wanted to. I'm still not happy with how it looks so I still am wearing my scarves (or baseball caps). I'm still on Herceptin until the beginning of August and people say that seems to slow the hair regrowth.
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MaureenB - I am so sorry you had all that roller coaster SE stuff. I know it can be so scary. But let's put this in perspective. Your cancer was discovered in early stage, not metastatic. You have an excellent chance of beating this and living a long healthy life. Yes there are risks with Herceptin and chemo. But you have SEEN relatives pass away from cancer, it is definitely something to avoid if possible.
Permanent hair loss is a very rare outcome. I would not worry about it.Heart damage from chemo and/or H are possible, but they will be monitoring your heart function throughout treatment, right? If they see a change, they can delay or stop treatment. Until then - keep going!
I am over 4 years done. My hair, heart, and energy level are all normal. I don't think about cancer anymore (well hardly ever). I live a full live, work out, work, have a wonderful family and just had my first grandchild last week. I held her for the first time and was SO GLAD I had thrown everything at the cancer to enable me to be here now.
The horrors of chemo WILL fade, you WILL heal and recover, life WILL go back to normal. I am here to tell you it IS worth it.
In support & sisterhood,
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Maureen. Been there. Hugs to you. IT GETS BETTER. Unfortunaty, not door a while, but your MO will be watching you closely, especially since you had a fever the first time. They will be watching your heart too. Losing hair is weird, getting the rest shaved is weird, wearing a wig is weird. Bit, it gets less weird after a while! On this cancer "journey" (LOL) we all seem to have taken what I like to call "scenic detours"! LOL the time when things didn't go quite as planned. But that's why we come here, for support, knowledge, and hugs. Hope that's what you will find too. This is not going to be the best time of your life, but it will be one of the most intense, and you will come through it. Remember, NO ONE GETS ALL THE SEs. Most just have a few they claim as their own. Mine was diarrhea, hitting on day 5 and continuing through day 10. So I wore diapers. But I don't any more. I lost hair, but now I have curly mop, I had no energy, But now I have a lot more. May you have few SEs, much love.
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maureenB I know how you are feeling. I was a huge BABY and did ALOT of crying.... I went into the hospital for 10 days after my first chemo. I was very scared of the heart damage but just had a scan and my heart held up great during chemo after all. My hair is not coming back yet but I did NOT shave it. I cut it really short like 2 inches all over my head and didnt end up losing it all. Dont get me wrong I still need a hat or wig as I have bald spots but I also have a few inchs of hair all over my head so I am not shiny bald. My nails held up nice and never lost my eyebrows or lashes. Believe me I was weak. TERRIBLE fatigue to the point I had to take a leave of absent from work. I am still off as I had exchange surgery yesterday but you will make it if I did!!!
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Hi everyone and thank you all for your support and encouragement.
Tangles- that is so cool that you at least kept some hair! You have really pretty hair from your pic. Great news about the eyebrows and lashes, too. I hope that I get that result. Somehow losing brows and lashes seems almost worse than head hair to me.
AmylsStrong- congratulations on your new grandbaby! I hope we all get to meet our grandchildren someday.
Moonflower- we have almost an identical dx! Glad you got hair back too. It is all weird... We never even felt sick, right? Everything was fine till we went to the doctor.
Hugs to everyone!
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Maureen your dx is almost identical except my tumor is grade 3. I just had my 2nd treatment and I'm already bald. I shaved my head last Monday and cried everyday before it. But I have yet to wear a wig because I don't like it. I wear a scarf everyday and I don't get any states. If I do then it's the, "I'm so sorry" sympathy smile. My side effects kick in around day 5 and it is mostly the big D. I can't keep it under control and I'm on Lomotil for it. I hope it gets better for you but whatever you do DON'T GIVE UP!! I have a blog if you want to read for encouragement. It is tmadrigal.wordpress.com if you care to read. Hang in there it will get better!!!!!
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Maureen, prof, our dx is very similar, yes. And prof, if you have the big D, I know exactly what that's like. Sucks. Drink, drink. Drink. I ended up hospitalized because of it, so please try harder to hydrate. It was so hard to keep it up, by day 6 or 7, I practically threw up just thinking about getting more water down. wanna a funny story about D? LOL, I accidrntly took two AMBIEN, instead of the Lomodil...... Fell onto the couch and slept for 8 hours Now guess the reason I took the Lomotil? LOL. I realized later that, thank god, AMBIEN puts EVERYTHING to sleep, or.I wouldn't have been able to laugh if I woke up in a sea of stuff! So, um, check your pill bottle before swallowing..... Lol. Just one of the fun stories about the big D.......
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Hi ladies !!! Had my first haircut today !!! December was last chemo, so it took, let's see, 6 months to get to this point. There really wasn't much to cut, just needed a trim with a few renegade hairs here and there, and my little ducktail in the back. I had resorted to using Albert VO5 hairdressing ointment (flashback !!!) to tame them.
I am looking for a suggestion for multi-vitamins. I was taking Centrum Silver until my throat started to protest. The're just too big for me, and I just couldn't swallow them anymore. I then got some gummie kind, but the flavoring gives me reflux. Is there anything out there that's small and workable? When I go to the pharmacy, I shake the different bottles to try to get a feel for how big they are.....and they all sound big.
maureenB-thinking of you with hugs !!! I, too, had no lymph node involvement, etc., and my onc said she was doing chemo as a preventative measure. I don't know if it will make you feel any better, but I came out fine, and my onc told me she wasn't worried about me AT ALL. I asked her if that was for the next 5 years (I think that's how long they will monitor me) and she said "no, for the rest of your life !" I was so thrilled. I also had a run-in with the nurse practitioner over something she said that scared the hell out of me, so I followed up with the doc. Again, she told me my CA was so low on the totem pole, that that's why she gave me "the atomic bomb" of chemo........to keep it that way. I decided when this first started not to get bogged down in all the numbers, and percentages and this & that. Right or wrong, it has made this a lot easier for me. I love my onc, I trust her completely. Initially, I read so much it made my head spin that I just decided...no more. If I have questions, I write them down and ask when I see her, and she pretty much seems to know where I'm going, so she elborates on any answers she give. We've got your back here. These ladies on here have helped me so much, and I just hope they know that. THEY got me through alot of this !! HUGS !!
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i started this regimen yesterday. i noticed last night my thighs were achy and i couldnt sleep to save my life, took at sleeping pill at 10:30 then at 2:30 when i was still wide awake i took another one. i had a horrible headache too and woke up with the same headache at 5:30. my stomach burns, no neausea. is this all normal? does it get worse and on which days?
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Hi chickaroo44 - I had some achiness on my legs, but it was of the sort that it would hurt for a few minutes and then go away when I shifted position. I also had trouble sleeping, but I think that was my own fault. I have lots going on besides this, and if I awaken in the middle of the night, my mind starts going a mile a minute. I really haven't had a good nights sleep in 3 years. That being said, I can tell you that after my first chemo, I was o.k. for a few days, then I felt just awful. I likened it to the hangover from hell times 1000. I cried and felt awful for 6 days AND I couldn't sleep. My onc took me off the steroids I was taking. (I threw them in the trash as fast as I could) I don't even remember the name of them, but I was supposed to take 2 the day before chemo, 2 the day of chemo, and 2 the day after. It made all the difference in the world !!! I never had a problem again. Of course, there were other SE's, but they were nothing compared to this first go 'round. Are you taking the steroids? If so, ask about it. Maybe that's what's causing your sleeping problems and headaches. I hope this helps !!
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Chickroo, I'd say the steroids are the sleeping problems, and you can probably blame the Herceptin for the headache. Hang in there. My worst days were days 5 through 10 with diarrhea. I was usually just really tired the day of chemo. Day after would feel queasy. Took my compazine, got my Nuelasta shot, felt tired and just wrong. Took my claritan after the second nuelasta shot because the bone aches were horrible. Then I had two not awful days. And the the big D. Taste went the third day til the week before my next tx. So I always ate something I loved the day before tx. Good luck.
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HELP WITH MOUTH SORES!!
This time around I've gotten mouth sores. I've been trying Biotene and got a prescription wash that numbs my mouth but only for a short bit. I've swished water with baking soda too. I've also tried Vitamin E oil on them. Nothing seems to help. I'm hoping to find something that will help with the pain and to help cure them.
Anyone out there have this problem and do you have a solution?
Thanks!!!
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mcgis: Sorry about the mouth sores. I think my "magic mouthwash" is different than what most of you have. Equal portions of Nystatin, Benedryl and Lidocaine - swish & spit 15 ml before meals & at bedtime.
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Chicaroo: You didn't say what your chemo cocktail is.
I mostly had the same SEs as moonflower except for the timing. BAD bone pain day 3 &4 - probably Neulasta. Diarrhea days 6-13. Neuropathy - toes, feet, fingers, lips, tongue. I still have a hard time getting down enough liquids and will go in for extra saline/glucose infusion again this time. But I couldn't make it w/o the steroids - 2 before, 2 day of, 2 day after. Once those are done I totally crash. A couple of nigits w/o sleep is well worth it to me. Most annoying SE this time (tx#4) is fatigue. I have to lie down & rest for 30 minutes even after just taking a shower. Exhausted walking out to get the mail. This part's cumulative for sure. But hey - I'm half way to #5 and mostly thanks to the info of these boards - we're all making it.
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Chickaroo - sorry for the chemo moment. Since you're on this thread, you're likely TCH. Just checking if you have additions - like I have Perjeta w/the infusions & then Neulasta the day after.
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mcgis - my MO gave me a prescription med called Caphosol for mouth sores - it worked great. Are you icing your mouth during Taxotere and staying away from acidic food/drink?
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Chickaroo, do not hesitate to tell your onc about your side effects, this might be your supportive drugs and not chemo causing this. When I did ACT I was on compazine that made me very agitated and umcomfortable. I was in it 2 days before I said something and turns out there was something else I could be on that did not make me feel that way and there was no need for me to suffer. Compazine is now on my allergy list. It is an antipsychotic drug, but it made me psychotic.
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Sorry I've been MIA. Busy at work.
maureenb I sent you a PM. The hair loss 6% might be a bit high. They don't know yet. I've seen numbers from 3%-6%. To be honest 6% seems a bit high in my experience just on these boards alone. Also as far as chemo and cancer. Not all people have a tough time with chemo. Don't compare what your family had. Different diseases and you are being treated at a different time. Just be sure if you are having issues you tell your onc so it doesn't become a problem. Are you getting nuelasta? I would ask your onc about that.
I'm 2.5 years PFC (post final chemo). My hair is just like before, doing the same exercise routine I was doing before chemo etc. Life is good.
Yay Rickysgirl
mcgis I started to get mouth sores too. My onc had me suck on ice chips just before/during and 10 minutes after taxotere infusion. Never got another mouth sore. It doesn't work for everyone but worth a try. You need to keep your mouth very cold so be sure to have ice in your mouth the entire time.
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http://www.dana-farber.org/Health-Library/Help-for-Mouth-Sores.aspx
glutamine powder can help with mouth sores. Also aloe to sip and swish (George's aloe has no taste.)
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Day 12 after my 2nd treatment and I'm barely starting to feel somewhat normal. This second one really hit me hard. I'm still battling the big d and I can't get my nausea under control.
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Prof, call your onc about the nausea and diarrhea. If you lose too much liquid, you leave yourself open to problems. You can't replace the fluids fast enough by drinking, and if you can't keep it down, you can't replace it at all. I always got all the iv solution, never left before the bag was empty. Also sometimes had to get an extra bag, besides extra magnesium and potassium. They checked my magnesium and potassium every chemo tx. good luck. Also, I never felt like eating, but white foods were the best, mashed potato, rice, baked potato. ( and I am a diabetic, but you gotta eat SOMETHING! LOL) MUCH LOVE.
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ProfMagic Also demand you onc give you some different drugs for nausea. There are other meds but some doctors are reluctant to prescribe because they are much more expensive. Very rarely have I seen someone not able to manage this SE. I think I know about 2 on these boards and I've been on here for 3 years now.
Also ask about what diet would be best for you since you have the big D. I can tell you this, stay away from dried fruit, beans, whole grain or the typical stuff that will make you go.
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Prof I thought this Chemo hit me much harder then others I had talked with and I never had the Nausea or D that long. I took Imodium and that took care of the D. I also had to ask for stronger nausea drugs and that also took care of the nausea. I would only have the nausea for up to about day 6 or maybe 7. I think it helped me to keep something in my stomach at all times. Call the dr and they Will for sure call something in for you. Don't wait until your next visit....
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Mcgis- sucking on ice chips during chemo made all the difference for me. I got mouth sores the first chemo and started the ice the second chemo onwards.
I had my last chemo on June 11 and two weeks later my nails began to split so i had them all cut down and am just keeping them filed down as the grow out to avoid more splittlng. Toenails seem to be fine.
Maureen- my hair is starting to grow back. My scalp is looking a bit darker and bumpy where the follicles are pushing up. I too saw the permanent hair loss side effect of Taxotere and was scared. But it is coming back.
I had my first Herceptin only infusion yesterday. I was skeptical about feeling okay after but I went to work and was fine.
My exchange surgery is scheduled for July 24!! YAY!0 -
Adavisart, I am jealous you have hair coming back. I look everyday with a magnifying glass and not a stubble of hair coming back. I Will be 6 weeks PFC tomorrow:-( Im sooo bummed......
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Had to delay my second Herceptin-only infusion yesterday. Still having some wicked heartburn / nausea post-op. So we moved it to next week. I don't think the nurses were too sad to have one less person to work in during the holiday week.
I think I found my happy med point with just Valium (for the TE) and Tylenol - hoping that nasty heartburn /reflux is behind me.0 -
Adavisart - Wow your hair is coming back quick! I am 16 weeks PFC and only have a 1/2" of hair. It is growing much slower than I thought too, which means I am going to be wearing the wig a lot longer than I expected
My nails keep splitting, even though I have them really short. They never turned color or got funky, they are just really brittle. I am hoping once the chemo affected part finally grows out they will be a little stronger.
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McKatherine - I had unrelenting heartburn throughout my TCH, despite being on multiple meds for it: Nexium double dose, maalox 4 to 5 times/day, pepcid 2x a day, Carafate 4 times a day, and then this nasty Green Cocktail the GI doc gave me for breakthrough symptoms I was still having despite being on all those other meds. It was absolutely the worst symptom for me! Most do not have it this bad, but I know Lago's was pretty wicked as well, and Carafate really helped her.
I'm glad yours went away, but I would recommend ounce of prevention since you've had it once already - you may want to see if your doc will get you on a proton pump inhibitor like Nexium, Prevacid, etc.
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I was on Carafate and Protonix… then when the new insurance wouldn't cover Protonix I was on Carafate & Nexium. I was never 100% heartburn free but at least I didn't wake up in the middle of the night having to sit up-right. I had a few nights like that.
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