Taxotere, Carboplatin and Herceptin
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My worst one was #5. Then I got terrified that the final one would be worse so I had my mom come down for a week to take care of me. And then....nothing happened. #6 went fine. Barely any SEs at all. We spent the week shopping and just being together. I think this whole process is just totally unpredictable. I really encourage you ladies in treatment not to obsess about #4. It can sap your energy which you need for other things. We truly never know how our body is going to react. Just get your rest, drink lots of water, and try to stay flexible. (God knows that is something I have learned through this experience!)
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Well, got the port out this morning...
Not as bad as I had feared. There were 6 people in the room and I asked why so many and they said they were having a port deplacement party. Then they turned on the radio and 2 nurses went arm in arm and started dancing!!!
Took the edge off my apprehension to say the least.
I am a bit sore and they did give me Vicodin if I need it.
Thanks.
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Ang7 - That's great! What a funny story!0
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Happy port displacement to youuuuu!! Will be nice when I'm all done with this too but I'm still in the beginning!
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ibliv....ouch! I thought 5 days was bad...I am so sorry to read this...hope you are able to get back into treatment as soon as you are well enough....Tend to your spirit sister....imo being in the hospital sucks all the hope right out of a body....and the longer you're there...well, I'm lifting you up right now.
Much love.
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Ok ... I just keep having questions....
So since my initial TCH treatment on the 7th, I went a week with no real side effects, and then a week in the hospital, but during that time experienced minor ones like tingling fingers, numb tongue, bloody nose, fingernails hurt, and hair loss.
So my question is, do you experience these same side effects each time? And do they get worse? Seems like they should get worse. The skin on the back of my hands is splitting too...very dry.
I also took my 3rd Herceptin today...and I discovered it is the Herceptin that makes my stomach loose. (Not complaining, keeps things moving along when all the other meds try to stop things up tight. But it's almost like they fight in my gut for dominance because I was in a lot of abdominal pain after my first TCH.) It also causes taste cessation and gives me a headache.
Also, I discovered greek yogurt. (Yeah I know, late to the party.) It has 100 calories (plain) per cup and 20 grams of protein!!!! Since my taste buds are off, it doesn't taste like anything to me so I can scarf it down....so glad I found it!!! That 60-80 gms of protein a day thing will be much easier to do, especially since I can mix it with a piece of fruit or vanilla, whatever, ice, and make a smoothie.
Made Christmas fudge and cookies today. It would be fair to say I consumed nothing but fat and sugar today....not good...but I'm so behind!! lol
Oh, I think I might take a page from Lago's book and not shave my head. I am starting to feel that if cancer wants my hair, it should have to fight me for every strand. (Of course this may all change in the next few days...)
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TonLee:
tingling fingers- yes I had that along with numb left heel after 1st tx. After the second tx I started taking 500 mg of Acetyl-l-carnitine (vitamin shoppe). My left heel is still a little numb but I never experienced any other neuropathy SE after that. Typically they do get worse with each treatment.
numb tongue- my tongue gets sore. Last time they had me suck on ice during the taxotere infusion. It still got sore but not as bad.
bloody nose- typical SE from herceptin (my onc confirmed this). Starts day 7 for me and gets better in about a week. I do put a little Vaseline up the nose and it helps.
fingernails hurt-mine started about 1 week after 3rd tx. It's been 2 weeks since my 4th tx and they kill even more and are starting to turn black. I have heard that icing fingers during Taxotere infusion can help. I think I'm going to ask to do this next time because it's getting to the point that zipping my pants up and buttoning shirts is hell.
hair loss- I lost quite a bit after 1st & 2nd tx then it stopped. Then this past tx (4th) it started again… not that I have that much more to lose. I still have my eye brows but my lashes did start to thin after 3rd tx. Still have them though but not sure for how long.
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Hope that helps. Now you know why they call it Taxoterrible.0 -
TonLee - I also have numb tongue that lasts for a while. I can still taste around the edges but not so much in the middle. L-glutamine is also good for numbness. I am 4 weeks from treatment 5 (my last one because of nerve troubles) and my eyebrows are mostly gone. That happened after 5 pretty quick. Its a powerful medication! Glad you are home. Next time will you have neulasta?0
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Thanks Lago!! That was the most useful information I've gotten yet.
I am going to get some Acetyl-l-carnitine tomorrow if I'm out. (Which I plan to be.)
I met a woman today who is exactly one week behind me in treatment, taking TCH, and had exact same diagnosis right down to triple positive 4/4 lymphs. I want you to know Lago, you're not just helping me, you're helping her as well. I pass on all your (and other) tips I find here....
Thanks so much.
t
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Omaz-
Yes. Next time I will have Neulasta. lol. My Onc. was flabbergasted because he was sure I wouldn't need it.
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Omaz-
That is exactly what my tongue does...just a little taste on the outside...in fact, I haven't had taste since my first treatment....makes it easier to eat things I don't like but that my body needs....everything just tastes like ash....
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TonLee...
I was noticing the taste thing just last night for the very first time. Popsicles sounded soooo good so my husband got me a box of them. I had 2 of them. One cherry and one grape. I had him try the grape one because it didn't taste like grape to me at all (and the cherry didn't taste like cherry either) they were just sort of "blah"
He informed me nothing was wrong with them.
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Pay attention to when you get the taste changes. The first time I decided to make chili. I had to wait till my husband came home to see if it tasted good. Yes it's really tough to cook if you can't taste what you're doing ;-)
Yes the chili did come out great but very spicy. I froze some so I could eat it 2 weeks later after my taste came back and my tongue was no longer sore. (Do not eat spicy or highly acidic foods if your tongue is sore).
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Good Morning Lago,
So does the taste issues come back and leave based off chemo schedule? If so when during your chemo cyles did you notice the issues?
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It does with me. My infusions are on Tuesday. The taste starts to change a little by Friday/Saturday. This last time It was back to normal the following Friday… so for about a week but every round it has increased a little bit. Thing is this time, although a little longer it wasn't as bad, not that it's real bad for me. I think it's because sucked on ice chips during the taxotere infusion.
I think I read it typically changes 7-14 days after infusion so I'm right on schedule.
But for me bitter things just taste more bitter. It's not that awful at all. Sweet taste is fine. Pepper, walnuts and bitter stuff like that not so much. I usually stay away from hot stuff during that time because my tongue is sore.
The icing also helped with the sore tongue.
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Nora,
I made Christmas fudge for the neighbors like I do every year. My youngest son delivered it. He's not much a fudge eater but my oldest son is...he came home and grabbed some, then went to his room to try and think of a tactful way to tell me the fudge was burned!! lol
OMgoodness...I gave out burnt fudge for Christmas!!!
I just couldn't taste it.
@Lago, I'm going to try ice, or maybe a Coke Icee for the Tax. next time. I get it first I think, then Herceptin, then Carboplatin...or I may have that backward....I hope its first because my cancer center doesn't have fancy things like ice...lol. Last time we didn't even have water....(but I generally bring my own anyway).
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TonLee - I iced my fingers and toes, wore elastogel cold cap and sucked on ice during taxotere infusions. My husband dragged in a big cooler with the supplies and a bag of ice from Safeway. Noone seemed to care about our big cooler.0
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Omaz, how are the caps working out... how long after the treatment do you keep them on?
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starella - I put on the cap 15 min before, then have to change at least once during the infusion of taxotere, then leave on 15 min after. On the first tx we were not able to keep my head cold the whole time with only 2 caps. I did lose a lot of my hair but it was slowly and just came out in little bits, no clumps at all. Now I am 4 weeks past last treatment and my hair is coming in. I would suggest using the Penguin cold caps or if you use the Elastogel caps the company said to wrap an ace bandage around to bring the top part of the cap in closer contact with the crown of the head. The caps don't fit real well on top ( I contacted them about that). I will say that where the caps came in tight contact with my head it seems like I lost less hair there. Feel free to PM me, good luck.0
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ANG7 - congrats on being Deported! It is a great feeling isn't it!.
Mine came out on Monday when I had the exchange done. I am sore, but it is mainly from the exchange surgery. I got good drugs, so that helps too.
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hi all, my wife is almost 2 weeks out from her first TCH and is breaking out with acne on her face fairly badly. I've read this can be a SE from the dexamethasone she took the day before, day of, and day after her infusion. Is there anything she can do about it?
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Has she contacted her onc. I do believe there is something but it's a percription.
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My face only broke out after the 1st tx.
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I had two really hard red spots appear on my face...I don't think it was acne because it was just hard and knotty.....
I'm hoping I respond like IowaSue and they don't come back...
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Ok another question.
I've had the big #1 TCH, and 2 subsequent Herceptin treatments.
I've noticed a few SE with the Herceptin, but one I find no fun is the day after I take it, sometimes two, I can't seem to reach my peak performance level while working out (and I've dropped it since starting chemo to 3/4s of what I used to do.)
My Onc says Herceptin is chemo, but its not "Really" chemo...as if there should be no complaints. If course he deals with powerful chemos so I get it's all about perspective...
I don't want to complain since Herceptin is the reason so many HER2 + women are still around....I'm thankful for it....but does anyone else have Herceptin SEs when you do single dose (I do it every week).
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I notice it with my dose. I get it every three weeks. Yes my chest seems a bit tight for a lack of a better word. It gets better in a week. Since you do it weekly I gues you don't get the chance to come down from it.
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TonLee - When i was on Herceptin-only (after TCH was done), I swore I didn't have and SE's and felt great. BUT a few months after I was finished with it (I finished H in April), I started to feel REALLY good and realized that, while the Herceptin SEs were minimal for me (and somewhat intangible), it really did affect me in ways I wasn't aware of. Now that I am 7 months out of it, I am doing really well, feel strong and full of life. Am working with a trainer and increasing the strength of my workouts each time. Am back to where I was before (well, maybe not quite, but close) in my cardio workouts. I'm very pleased.
So my advice is this - and I KNOW it is hard - because we don't want to give cancer or treatment one inch in terms of robbing from us - ....but.....try to see this as temporary and be patient with yourself. Herceptin is not exactly chemo but it is a strong medicine and affects our body greatly - that is why it works! So keep working out, but scale back as needed (sounds like you have done that already) and give yourself permission to operate on a lower level 'for now.' There will be plenty of time to push yourself later - and it feels great to do it! In some ways, in retrospect, I wish I had babied myself a little bit more, but I was SO determined not to lose any ground. I don't think I was willing to consider what i was going through, and carrying on as normal was my way of reassuring myself that I was ok. But the fact is, we are going through strong treatment, and things DO change, and accepting that, and being flexible is one way of being good to ourselves during. (Not that I have any right to talk, since I wasn't very good at doing that, but maybe you can learn from my stubbornness.)
Love to you TonLee - I celebrate your determination.Amy
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imatthew
I had breakouts pretty bad as well and in weird places like my eyebrow, around lips, nose and really painful ones in my nose! Doc said it was from the steroids and to just ride it out.
I use Clean & Clear acne medicine and it works fairly well. I also found a wonderful concealer that has acne medication in it. Murad acne treatment concealer. It's been a miracle worker for me. Helps clear them up and hides them as much as a concealer can in the meantime. I bought it at Sephora.
I'm in my last breakout I hope! One is forming in the corner of my lip and in my nose as I type.
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@ Lago, I will go to once every 3 weeks after the TCH is done. I'm kinda dreading it.
@ Amy, thank you so much for that. I don't want to become one of those women who make excuses for failing in life because "I'm sick" or "have cancer." It helps when I am reminded that chemo is a big deal, it is toxic, it does change our physiology. And reading you are back to your previous training standards and rebuilding...whoa, that really just made my day..makes it much easier to forgive the less than stellar workouts.
I keep forgetting that muscle lost can be regained, bones can be strengthened. All I see is the loss and somehow it seems like that's the way it'll always be....kinda like losing a finger.
I'm having hot flashes pretty heavy and only after ONE treatment!! By the last one I'll be a flame...lol. I wonder if we burn more calories during hot flashes? Seems like it....heh.
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TonLee I too will be every 3 weeks even after chemo for Herceptin. I too want this to be over with but then we have the 5 years of hormone therapy.
And I wish I was shedding water gain with night sweats but I just don't get sweaty enough. Seriously it's just my head and neck that get sweaty. My tee shirt isn't even damp when I get them. The only last for maybe 60-30 seconds it seems.
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