Weekly Taxol group
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MameMe - I think I have decided to wait to shave it. I have enough that I am comfortable around the house or with a ball cap on to run to the store.
The wig was more of a + than a -. I was very worried because I am not even a hat wearer. I use to get headaches when I wore anything tight on my head. I do live in VT and we have had a cool summer so far but on the night that I wore it the weather was warmer. It itched a little because I still have hair underneath and, of course, I thought everyone could tell it was a wig. I tested the look out by going to my DS and DIL house and they took some time to notice the wig. I think I will depend on it more and more.
This wig is the TLC wig that was free. I think I will probably invest in one that is better quality.
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Good idea!
Am starting weekly Taxol on Wednesday. Am going to take L-Glutamine which according to several studies can help lessen side effects for you. Do try googling L-Glutatmine and Taxol to see if you think that cd help any of you.
A question (can't see how to start a new thread). My Consultant recomended sucking on ian ice lolly whilst having the Taxol infusion, have any of you tried this, if so how many icelollies did you get through? How long is the infusion?
bestof wishes and positive thoughts to every one.
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MaMe and Brigadoon: I lost so much hair week 4 that I shaved it and have only worn the wig for more 'formal' occasions, or when I don't want comments/stares/etc, and most recently to work. I find that it is not bad, it's a real hair wig, but it's very hot. I also had never experienced hot flashes, so those don't really help when they do happen.
Overall though, everyone says it looks natural (it's what I have on in the pic), and I appreciate having it. That being said, at home, I'm always bald indoors and generally I prefer my new best friend Buff over everything else for going outside. Luckily I bought a couple. One other note on the hair thing, my hair grows in during weeks 1 and 2 and then generally falls out again during weeks 3 and 4. I find the wig is way more comfy when I to keep it shaved, I just use the electric trimmer and buzz it. Would have never thought I'd be saying to the DH, could you shave my head again? Sinsin: hope you get a break or vacay soon! I'm really really looking forward to mine.
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Thanks Jhodro! Just had Taxol #9 today! Scheduled the rest of them and found out my onc won't be there for my 12th one as she'll be in Belgium. Boy, am I jealous. LOL
As to neuropathy, I get tingles and some numbness every once in a blue moon in a few toes or fingers but nothing too troublesome or that stays. I think the fact that I ice during infusion really helps. I didn't have any of those symptoms this past week. Hope everyone is doing well and having a side effect free day/eve!
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Doobie doobie doo. . . Steroid induced insomnia. LOL Persinally, I love the steroids because they help so much with the fatigue and one night of staying up late and forcing myself to sleep is an even trade off to me. I catch up on some tv or reading and then after Fallon, turn the tv off and relax. Then focus my mind and mediate to sleep. Once asleep good! Hope everyone else is faring well and sleep soundly!
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SinSin: Congrats on #9 I am in the chair for H only today!! #9 for me will be July 8. I woke up with some mouth sores this morning, blisters under my tongue. But my feet are better. The soles are very sensitive. I have a call into the MO. I'm starting to wonder if I will be able to do the last 3 at full dose. He doesn't believe in icing…so we'll see.
Hope everyone is enjoying a SE free day!!
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What?! Your doc won't let you ice? That's crazy! Even if he doesn't agree or believe in it, there is no harm in letting you do it if you choose to! It's not like it will harm you. That's a bit absurd. LOL
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Sinsin...I have a call into him to discuss it. Obviously, I need something to get through the last 3 treatments. I feel like I have totally taken a nose dive this week. Grrrr. I was hanging on my hopes on the idea that SEs would remain consistent throughout, but it definitely seems like SEs are getting worse as I go, which does make sense, it just wasn't my expectation. Were you able to get any sleep?
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I just had taxol #6 of 12 yesterday and so far no neuropathy but based on reading these boards it seems this is the point in the 12 week cycle when things start to go awry! I have a few nails that are "sore" so I know something is probably brewing. These past 6 weeks have been real nice though, especially after coming off a pretty difficult dose dense AC cycle.
jhordo- Sorry about the neuropathy. Hopefully it will go away and stay away for your vacation. My doctor doesn't believe in/won't let me ice either. Same thing with Cold Caps. I've found during this whole process how interesting it is that different doctors have different rules for what they will and won't allow for managing side effects. Since I've joined these boards, there have been many things others have been allowed to do that I haven't and vice versa. Crazy!
Brigadoon- I had my head shaved not long after I started losing it. I had longish hair (a little below my shoulders) and when I could start pulling it out in clumps with no effort, I knew it was time. Besides, it was getting too messy around the house. Also, I didn't want to take a shower and have it fall out in massive clumps. So, like others have said, you just know when its time. Good luck.
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cmp106: I have now started a B complex vitamin to try to help the neuorpathy. I kind of wonder why I wasn't told to take it sooner, ahead instead of waiting until I have symptoms. Hopefully it helps. I also have a prescription for the multiplying blisters under my tongue, they think it's a yeast infection..so hopefully that also kicks in soon. Three more treatments?
Under the good column, I went to my first cancer survivor gym workout with the same person who did my physical therapy and that was great. I exercised, not just walking, for an hour and felt so much better afterward. They have a few seated machines so I can do cardio without having to walk on a treadmill and a few exercises with weights and the exercise balls. I hope I can keep it up!!
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Jhodro, yep I finally got some sleep. I turned the tv off, turned off my Nook, and turned the light off and forced myself to lie down and relax. And eventually I fell asleep. I've got a system down now to get myself to sleep on infusion nights. Thank goodness! LOL Grats on the workout and glad it helped you! I've been meaning to start doing some workouts but I'm just too darn lazy. LOL I've been wanting to get back into yoga but with 2 kids, I just don't have the motivation. LOL So, I walk around the hood most days. This way my son can ride his bike and my little daughter walks with me.
CMP, I hope you continue to do well with Taxol! I get some tingling now and then sometimes in my fingers and toes but nothing major and nothing constant. It's been 2 weeks since I've felt anything and I just completed Taxol #9. I really believe the icing is what is helping me. I have the lines through my nails and they lift easily and sometimes they're tender but other than that, my nails have been hanging in there! They're just brittle and break easy but I chalk that up to the fact that chemo dries you out period.
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Sinsin: glad to hear it! Sounds like your kids are young! My youngest is 7, then I have a 15 and 17 year old. The older two are girls, youngest is a boy. I have been walking the dog fairly consistently, like you mentioned, so my 7 y/o can ride his bike along too. I was also doing yoga (very sporadically) but the PT banned me from it for a while, she was concerned about over-stretching and she said I definitely should never do hot yoga with the potential for lymphedema. I don't like hot yoga anyway. I'm hoping to get back to a class after vacation or maybe even a class during. So relaxing. I've been fortunate that my nails have been ok so far. Maybe I shouldn't even say that at this point.
I had an H only infusion yesterday (Tue) so I did get some sleep, but for some reason up before the sun today. I'm going to knock some work out, because I have a feeling come 3pm, I'm going to be in dire need of a nap!Hope everyone is feeling well!!
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is anybody else having horrible headaches? Also, what about your nose? Mine is dry and bloody and seems to be full all of the time. I'm sorry, TMI.
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Jhodro, my kids are 5 and 2. My son is the oldest. And I don't even understand hot yoga. LOL I'm from Florida and my sister goes to hot yoga classes and I'm like "Why are you paying for hot yoga when you can just go outside and do it for free?!" LOL
Doughboy, I don't have headaches but the sinus issues, yes. I'm always sniffly and every time I blow my nose there's some blood. It's from the chemo drying us out.
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Jhodro- congrats on the workout! That's great. I've been trying to do walking around the neighborhood or walking on my treadmill or light elliptical trainer work. I find that it helps tire me out so I can sleep better at night. My sleep patterns have been awful. I haven't done anything with weights since I started chemo but definitely need to get back into it! As for the B-complex, my doctor did say that if and when the neuropathy started, we could talk about treatments for it. So, we'll see! I think some docs prefer to prescribe/suggest something once the side effect happens and others are comfortable prescribing/suggesting proactively. I hope the vitamin works for you!
Sinsin- Fingers crossed you can get through the remaining 3 with no neuropathy! So true about chemo drying everything out. My skin is awful! I don't have the lines yet but several of my nails are sore and my thumb nail has a deep ridge in the nail that I can't remember if it was there before or not! haha.
Doughboy- no headaches for me (knock on wood!), but I have a drippy nose all the time (started on AC) and lately (since starting taxol) there has been blood when I dab at it or blow (sorry, TMI). I think its just really dry up there, even those its drippy...that's barely even makes sense! haha. I talked to my Onc's nurse and she said it can happen and just not to blow (if possible) and use a saline rinse to keep it moist (which I have yet to do). Good luck!
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I have the same problem doughboy, very dry nasal passages with bloody nose in the morning. I will have # 5 of 12 weekly Taxol on Friday, also a lot of fatigue
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I have the drippy nose. It had led (in the first round, week 3 or so) to fluid in my ear, so my MO prescribed Claritin D. So even on treatment days I take that + the benedryl. I only drip if I bend over. LOL
This week I added two more pills to my collection: the B complex for neuropathy and then an anti fungal, apparently the mouth sores were caused by a yeast infection. Who knew that could even happen?
Sinsin - I love those ages! So fun before they get all attitude-ly…and hot yoga. Um. No. Never going there. I agree. We can be hot outside. It's why A/C was invented!!
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Jhodro, I am glad to hear about the fluid in your ears. I mean, I am not glad for you, but it explains mine. I will have #8 Taxol tomorrow. I am wondering if some of my lost if taste and nasty taste could be a yeast infection or thrush. I'm sure it's not, just wishful thinking that I could get rid of it that easy.
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Doughboy, I'd go for the Claritin D if it's bugging you. It worked overnight. The stuff for my mouth, not so much overnight. I'm hoping it works by tomorrow or I'm calling again for another solution. I always thought thrush was more on the tongue than under it, but that's what the nurse mentioned. I also have zero taste ability. I am ok - I still can eat bread and cheese. I am usually more of a texture eater than a taster, if you know what I mean, so now it seems even more exaggerated. I will have #9 a week from Tuesday. So it sounds like we are very close together. Do you get a break week?
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No, I go every Thursday. Down to 21days! I have been living off of Mac and cheese and hard boiled eggs. I'm going to try the Claritin. Thanks for the info.
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Good for you!! I have three treatments left. I eat grilled cheese, mac and cheese, grilled cheese, bread, LOL! Best of luck to you!! The light at the end of the tunnel must be starting to shine through!!
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Cheese and bread have very little taste to me now and taste absolutely disgusting so sadly I have been unable to eat it. I've been eating lots of cereal, oatmeal, smoothies, and ice cream. Thankfully my ice cream still tastes somewhat good. What's weird is I noticed some taste coming back this past weekend and then I had my infusion Monday and everything is back to bland. Talk about a tease!
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Ok, so this maybe the weirdest question ever asked but is it possible to get neuropathy of the face? LOL I'm serious too. Lately I've noticed that my face doesn't feel things so well anymore, like my sheets and pillowcase. They feel weird to the skin of my face and my cheeks are somewhat tingling right now. It's like I'm losing the sense of feel in my face. Anyone else experience anything like this??
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Sinsin you can get neuropathy of the face, I have had 37 weekly taxols and have no neuropathy in my hands and feet but a little in my face and mouth. Apparently the bowels are another part of the body that can be affected.
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OMG! Thank God! Sorry that you're experiencing it Shazza but I am so grateful that I'm not going crazy! LOL I swear, I was beginning to worry that I was because I'm not anemic (they do a CBD before every infusion) and I didn't know what else it could be.
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So with that many Taxols you're stage 4, huh? Is the Taxol stabilizing you or kicking mets ass? I hope it's kicking ass! By the way, you look great in your profile pic!!
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Okay you are all inspiring me. I know I walked and climbed at Fort Ticonderoga yesterday so I guess I'll start a walking program tomorrow. Thanks a BUNCH (sarcasm ) no,really - you are encouraging me to increase my odds and I will try. Thank you (sincerity intended).
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yep I'm Stage 4. The taxol certainly reduced my mets initially and has been keeping me stable for the last wee while. I'd love to be NED but I'm not sure that's going to happen. I've found taxol easier to deal with as times gone on. Especially after I changed my antihistamine and got them to greatly reduce my Dex dose.
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That's great news overall! And don't give up on that NED! It may take a harder chemo line though and if you're able to live a better quality of life on the Taxol and be stable, that's good too!
What are you doing to treat your neuropathy? It's not like we can ice our faces (or we could but that wouldn't be very comfortable or fun LOL) so are you taking the supplements?
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Brigadoon, if you just walked and climbed a fort then I think you're doing great!
Jhodro, I hope the meds help with the infection fast! Yikes! Doesn't sound fun.
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