Weekly Taxol group
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YES, bjquilter - tinnitus is new to me as of Taxol #2. However, it usually goes away in a few days, about the time the bone pain hits. Hopefully it's not permanent.
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YES, bjquilter - tinnitus is new to me with Taxol #2. However, it usually goes away in a few days, about the time the bone pain hits. Hopefully it's not permanent.
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ijenks...I will be having Taxol #9 this morning. My only side effects are a bit of achiness a couple days after infusion. My nails are very dry/ridged. My skin is very dry....use CeraVe for that. Other than that...I'm good. Hope you continue to have minimal side effects.
Hope
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ijenks,
Thanks. Yes after tomorrow I will be 2/3 of the way there! My premeds are zofran and something else, then at home I have zofran or ativan, as I had some instances where Zofran wasn't cutting it. I usually only take the ativan at night as it makes me even more tired, unless the zofran really isn't working and I'm feeling desperate.The fatigue is tough, as I work full time too, and have nothing left when I get home. My husband and even my kiddos have helped pick up the slack so to speak. It does make a difference to have that support!
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Neutrophils are holding strong at 1.0 this week with neupogen shots so taxol #12 is still on for tomorrow! I can't wait to be done! So yesterday I felt great and walked around the mall for awhile and I noticed when I got home that my feet were aching really bad and that I was bleeding from one of the toenails. I talked with my doc about that and my memory issues today. He told me I am going to lose that nail and that I can either let it dry out and fall off on its own or go see a podiatrist. I told him I don't like anyone touching my feet so I will do my best to care for it at home. As for the memory/ clumsiness issues, he told me he doesn't think that is taxol related and I am having an MRI done just incase. On the upside-he told me that if I promise to follow neutropenic diet/precautions, that we can skip these last two neupogen shots! I told him that my birthday is monday and that is one of the greatest birthday gifts!
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Sammi2006, congratulations on crossing the finish line with Taxol! Keep on that diet to nourish your body. And happy early birthday!!
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Sammi! Congrats on being done tomorrow 😊. I am too!
I’m definitely feeling the fatigue and more nausea now. Anyone else get puffy legs/hold more fluid during Taxol? It’s not too bad but I think it’s from the steroids or Taxol.
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Congrats and good luck to you too ciw!! I have been ready for sometime! I don't even mind the neutropenic diet. Im more happy to be able to have wine, pizza, and a piece of chocolate cake 😂! I haven't had the puffiness, but it can be a side effect of the steroids, I think.
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Congratulations Sammi2006 on Taxol #12!
I get the first of three neupogen shots tomorrow with saline. Anybody else get this weird itchiness with taxol that just makes you feel like ants are trying to get out of your body through your skin? I'm glad I called my doc - onc nurse said it's a kind of neuropathy and has given me Lyrica.
I've finished Taxol #4 and Carboplatin #2. I'd be glad if anyone's using Lyrica and can share their experience.
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bjquilter...I had tinnitus in my left year. It was so annoying. When I asked my onco about it, he said sometimes there a little fluid buildup. Mine eventually went away, but every now and then it reappears for a couple of days.
Sammi...Good news all around! The best birthday gift ever!! Except for that toenail. I hate people touching my feet...thus, I've never had a pedicure in my lifetime. Everyone tells me I don't know what I'm missing..LOL Diet is very important during this time...I follow it closely with meals from the "Eating Well Through Cancer" cookbook. My neutrophils have ranged between 3 and 7...so, I've never had to have the Neulasta injection.
CIW...Woo Hoo....congrats to you for reaching the end! I haven't had the puffiness...rest assured it will be gone soon!!
Paula...Sorry for the itchiness...that sounds horrible. Hope the Lyrica does wonders. Were you taking Claritin along with your treatments? It's good for itchiness and might have kept yours at bay.
I had Taxol #9 yesterday. I am scheduled for a CT scan with both IV/oral contrast on Feb.9. Then I will see my onco on the 15 to go over results and see what the next course of action is. A bit of a Nervous Nellie, but will just go with the flow.
Have a great weekend...hopefully pain free and few side effects.
Hope
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So taxol #12 is officially DONE!!! I am so happy to be done 😂. I am still riding on a steroid and caffiene high. So I get infusions where I work and today for the first time my work "mamma" came to visit on her break. She texted me a video a little later that the ppl I work with made to celebrate! She told me that they have a lot of people on isolation for influenza and that is why they couldn't come down, so they made this super funny/sweet video instead 😊 I feel really lucky to work on a crazy busy unit with these amazing people.
Ciw-you are FINISHED!!I am so happy for you!!!
Nonahope- I am sending positive vibes your way and hope your CT scan goes well!
Paula-I have that crawly feeling in my legs, but luckily I haven't needed anything for pain. I hope the lyrica will give you relief! I have never taken it before, but have administered it many times. It can cause dry mouth and constipation so remember to continue drinking plenty of fluids. Also it can cause some drowsiness as well.
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Sammi—yay!! We are done! If you wana be facebook friends or anything just pm me and I’ll give you my info! It’s a great day to be done, but I also have so much anxiety towards the future. Such a strange journey this is. I hope this next chapter continues to bring growth and healing. Ps how exciting we get to get some good old hair again haha. Sammi are you also a nurse?
Nonahope-still praying for, and thinking about you. Your attitude and encouragement is so inspiring and if you wana me Facebook friends or anything just let me know.
Frozentoes—hi minnesota friend. Are you done with treatment now too?
I have a friend who was 12 days overdue to give birth to her first child and was induced tonight. It was this weird symbolic thing that as we all live and die and heal and don’t heal and whatever, the cycle of life still continues.
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Ciw-i it is so amazing to be able to close this chapter on our lives! And I can't wait for some hair that stays! I have about half an inch of patchy hair! It was holding strong for a while and then for the past month after each infusion some would fall out!! It needs to make up its mind! At least the armpit hair completely fell out again though lol! And yes, I am a nurse. 😊
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Hi, all,
Lyrica has taken care of the strange but awful itching that came from inside me. At least for now. Taxol #5 is Wednesday, but I have to say that I have never felt this exhausted, this flattened out, before. I got two saline IVs between Taxol 4 and 5, and they usually help more. I know it's a common SE, but I worry a bit that four Taxols have nearly wiped me out; will I get to #11?
Nonahope - I have taken Claritin daily since before diagnosis. Thanks for suggesting.
Sammi - Thanks for suggesting that Lyrica itself might be adding to this total exhaustion feeling.
My husband and I designed shirts for my next Carboplatin (#3) and Taxol (#6). It happens to hit on Valentine's Day, and they say, "Kicking Cancer for 30 More Valentine's Days!" You should know we are 63 and 67
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Hello. I am so envious of those of you who are done. Grateful that you are. I have three more of Taxol left. Everything hit me all at once. The extreme fatigue of all of that chemo got me at work. I thought I was having a stroke. Not able to think, focus. The neuropathy gets steadily worse (still not that bad), but it makes typing extremely slow. I do all my composing on the keyboard, so I'm not able to keep up. I am finally on medical leave for the next five weeks. It helps that I don't have to go into work and perform at the same level, because that is not going to happen. I just don't want to delay treatment. This neuropathy is worrying. I can't stay focused enough to get through a recipe. This message is going to take me an hour to compose and edit. Now is the time to rest, so that's what I'll do.
I broke up with my boyfriend three days before Christmas. Some people aren't good in a crisis. He admitted he could not handle my illness and treatments. I'm over it. I can't care for him right now. I have more important things to focus on. Prayers for all of you. Light at the end of the tunnel. And then on to radiation. Whatever that entails.The best thing that's happened is that I got a henna crown on my bald scalp, and it is gorgeous to me. Beats a wig any day.
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Hi, all,
Lyrica has taken care of the strange but awful itching that came from inside me. At least for now. Taxol #5 is Wednesday, but I have to say that I have never felt this exhausted, this flattened out, before. I got two saline IVs between Taxol 4 and 5, and they usually help more. I know it's a common SE, but I worry a bit that four Taxols have nearly wiped me out; will I get to #11?
Nonahope - I have taken Claritin daily since before diagnosis. Thanks for suggesting.
Sammi - Thanks for suggesting that Lyrica itself might be adding to this total exhaustion feeling.
My husband and I designed shirts for my next Carboplatin (#3) and Taxol (#6). It happens to hit on Valentine's Day, and they say, "Kicking Cancer for 30 More Valentine's Days!" You should know we are 63 and 67
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CIW - I’m not quite finished. After last week’s delay, I’m hoping tomorrows blood work will allow me to get the last Taxol. But I’ve still got AC headed my way.
I am really not looking forward to that. By the way, are you in the Twin Cities area? All of my appointment reminders last week kept warning me about the Super Bowl traffic but I didn’t see much of difference than normal. I am a bit happy that it was as cold as it was so that the out of towners got to experience some real Minnesota cold. Paula - I was told that there is a usual dip in energy around weeks 4 and 5. I had a lot of fatigue around then but then it let up for a couple of weeks and then came back. Don’t worry, you’ll make it to the end! It is hard though so remember to rest when you need it. And I’m glad the itching is under control. Mine came with a nice rash that wasn’t very pleasant.
Kamalo - I’d love to do a henna tattoo on my head but I’m too nervous about a skin reaction. Had you done henna before? I told my 7yr old that I’d buy some washable markers and let her draw on my head. Maybe that’ll give me a pick me up.
Has anyone experienced nail lifting? What did you do besides keeping your nail cut short? My nails are still fairly strong, just lifting from the nail bed. I really wish that SE had skipped me
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frozentoes—I forgot you still had AC coming. It's so hard to predict how any chemo will go bc we all respond so differently. I hope it's not too bad for you. It really varies, but you will get through it then be DONE :-). Now that chemo is done I'm looking into more support stuff. Do you know of any good support groups around here? Ps totally agree—glad it was chilly. Also I'm in Eden Prairie and the traffic around the metro area really wasn't bad. As for what I did for my nails I also iced them during Taxol. (Ps I iced my mouth during adriamycin infusions and never got mouth sores). PM me literally anytime you want a Minnesota friend or if you wana talk more one on one! Or if you have questions about AC or anything. Fingers crossed your counts are good this next time.
paula and kamalokitty- I am praying for you both and sending love and strength your way.
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frozentoes, I have nail lifting. Aside from icing during Taxol infusions, cutting the nails short, slathering moisturizing cream on them all day, and not submersing them in water for too long, there's little you can do. I also have numbness (neuropathy) in my toes that gets worse at night. I manage with Aleve.
As far as AC goes, I had a very easy time with 1,2 and 3. I never came close to getting nauseous. I was pretty active the entire time and could get daily walks in with no problem. Moving around is essential for metabolizing the chemo and getting it out of your system. The worst part of AC for me was the insomnia on the day and day after chemo, due to steroids. Melatonin helped, as did taking the 2nd steroid pill before 2pm each day. The next worst thing was getting enough hydration and nutrition on the days after chemo, when my taste buds were altered. My advice is to keep a wide variety of food on hand, and don't buy too much of any one food, even foods you think you'll love. With AC, your mind and stomach are at odds with each other. Soups, cereal, PB&J and rice pudding ended up being staples for me.
As far as drinking goes, I also added lemon or lime juice to my water so that it didn't taste metallic. I tried tea for the first time and liked it. It's important to drink TONS, so before your infusion, buy a variety of drinks and soups on hand so that you can eat.
Keep in mind that this only lasted until Saturday afternoon (chemo day was Wednesday). By Saturday night, things were beginning to taste normal again. Then I had 10 or 11 good days to enjoy before the next infusion.
That being said, #4 was bad for me, in that I had very low energy for almost a week. Part of that was the cumulative effects, but part was definitely psychological. I had finished my first round of "hard" chemo, and was depressed to realize that I still had 3 more months of weekly treatments to go. I didn't think I'd ever get through it (and now I'm down to 8 days!). And after 7 weeks, I think it finally hit me that I had cancer. I know that you know what I mean.
Anyway, your #4 will be the end of chemo for you, so I have a feeling you'll do much better than me!
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kamalokitty - I'm sorry your boyfriend didn't work out. I honestly feel that people WILL come, those who aren't afraid of dealing with this serious health issue. You are going to come out the other side, you are going to beat this, and some wonderful man will be there, I truly believe.
Sammi - I've asked that my Lyrica prescription be changed to 50 in the AM and 100 in the PM. That gives me the 150 I need, but this 75 in the AM makes me so groggy. I know the SE will probably wear off, but that would be about the time I finish Taxol/Carboplatin. I'd like more liveliness before then. So, again, thanks for suggesting that at least some of my exhaustion might be due to Lyrica.
ALL - thank you for thoughts and prayers as I get Taxol #5 infusion tomorrow. It won't be not as bad as what's coming next week: Taxol #6 with Carbo#3, so I'm going to try to keep moving!
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My liver surprised me and my oncologist today but going back to normal levels! Last week was 355 and this week was 57 (normal range is to 55). So I finished the Taxol!! Woot! I’m still riding the steroid wave for at least the next 3-4 weeks but at least it’s working. I’m so excited to be done with at least 1 part of this journey.
CIW - Actually, you’ve got good timing asking about support services. I’ve been on a research kick lately so here are a couple of options:
Gilda’s Club: http://www.gildasclubtwincities.org/ I went to a new member meeting last week and it seems like a really great place. Their support groups are a little different because they want people to attend regularly and not just drop in. The rest of their programs are more just sign up so they can make sure they have enough people. They have a session this Thursday at 5pm called “Mental Health: Finding Balance during the Complexity of Cancer” that I’m signed up to attend.
Firefly Sisterhood: http://www.fireflysisterhood.org/ This group offers a more one on one support network. Worth checking out.
Fairview Health has a couple of support groups for Breast Cancer. I’ve not gone to them yet but here is the information: https://www.mhealth.org/care/overarching-care/cancer-care-adult/support-groups
Young Survival Coalition: https://www.facebook.com/youngsurvivalcoalition/ They have a pretty active Facebook page and there is a local group that meets too but I haven’t had an opportunity to go yet.
Sorry, I have a tendency to go overboard when researching.
And I’m in the Richfield/Bloomington area so we’re practically neighbors!Lisa - Thank you for sharing your experience! I am going to go find a plastic water bottle to use before next week. Maybe I’ll get fancy and get one with a fruit infuser. I’m pretty good about drinking water but I have been using a metal cup and I don’t think that will help if I get the metallic taste. And yes, I completely understand that feeling about realizing you have cancer and it’s real. There is a really big psychological aspect to cancer. Which is partly why i’ve been researching support groups. Sometimes, you just need a little insight from others.
Paula - You’re going to do great tomorrow! I’ll be sending out positive thoughts for you
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frozentoes—I signed up for a new member meeting on a whim today and went to that this evening (at Gilda’s club). I’m totally gona do stuff there! I’ll probably go to the valentines dinner next Tuesday. I am gona try to do a young adult support group, but i warned them with my nursing job I won’t always be able to attend. I also actually signed up for firefly sisterhood earlier this week and am waiting for my match. Looks like we are on a similar page! I know the YSC meets at Gilda’s club and I’ll probably try to do that. Also, CONGRATS on finishing Taxol! Another step complete!!
Paula—I hope you get the lyrica adjustment and it works for you
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Congrats Sammi2006, CIW and frozentoes on completing your Taxol! I feel like there should be a bell rung for everyone who completes a treatment cycle! I will say that at #3 I felt pretty depressed about the vast number of treatments still ahead of me, but when I hit #5 it seemed like they were speeding up and instead of it feeling like I was never going to finish it suddenly felt like the end was just around the corner! I have treatment #8 on Friday, so I'm looking forward to saying I'm 3/4ths done!
Kamalokitty- I'm sorry to hear that things are so challenging for you, but you are right...rest and treating yourself extra special is what you need right now. I love the idea of a henna crown and I give you props for doing it!
As someone who also did AC first, I echo all of the things that LisaRX recommends to deal with the SE. I also had to take 5-7 days of Zarxio shots (due to my low WBC counts) after each AC and it took me two treatments to realize that they were the cause of my terrible muscle pain. I will also say that about day 7 after treatment I was feeling pretty close to normal, so I appreciated the longer breaks between side-effects. I exercised more during that treatment cycle than I do now - mostly because I knew less about what to expect than I do now- but I do feel that it helped with mitigating the SE. I have a stationary bike and tried to do 30 minutes at least 3-4 times a week and also tried to get out and take long walks when I was still feeling good.
I also have nail lifting, but haven't been doing anything other than keeping them short, and they seem to be holding steady at about 1/8 of the way down from the tip. I've been getting pins and needles in the bottoms of my feet, but it doesn't last very long, so I'm hopeful that it is a good sign. I already had minor tinnitus and hearing loss in my right ear prior to treatment, but it has been flaring up over the last week or two. Once again I'm thankful that others have mentioned their side-effects as it helps me to feel more "normal" and keeps me from stressing out about things!
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I met with my oncologist yesterday, and she wanted to take me off of Taxol because the neuropathy is getting more pronounced. I told her I wanted to muscle through it as I have only three left. She said that I could finish, but I had to tell her if, after this next one, my symptoms increase. She recommended icing hands and feet during chemo and acupuncture for the neuropathy. I am doing both. The neuropathy is starting to feel more painful (still mild) instead of just numb, so I need to do something. Going to get more gel packs to free before my next Taxol tomorrow afternoon. So close and yet so far. I hope we can all hang in there together.
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Hello, Friends,
I'm frustrated and disappointed that I couldn't get Taxol again today. Neutrophils too low (got shot) and red blood cell count too low (getting second transfusion tomorrow.)
Questions: How many of you have had blood transfusions, and how many did you have?
How many of you had low neutrophils that interrupted your Taxol.
I spent five hours at the hospital since my MO is out of town, and that with no chemo.
It will get better, and I meet with my MO next week, Valentine's Day, when I'll get both Taxol and Carboplatin. Or not.
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kamalokitty, I used l-glutamine (30 grams per day, day of chemo plus 3 subsequent days) and vitamin B6 (100 mg per day) to ward off neuropathy. There are some studies indicating a benefit from using l-glutamine for chemo-induced neuropathy. My chemo nurses recommended it and actually gave me some sample 30 gram packets to try. You divide the 30 grams into 2 or 3 "servings", and mix it in the liquid of your choice. It doesn't dissolve, it just suspends in your liquid. 15 grams is about a heaping tablespoon. You can get l-glutamine powder at GNC, or Amazon. Worth a try. The B6 is available everywhere. It seemed to work for me - but then, I might be one of the people who wouldn't have had a neuropathy problem anyway.
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I had DD Taxol #3 today. No reactions to the infusion. So thus far, only DD #1 had the reaction (the burning throat). And the Benadryl still did not put me to sleep - but I am not complaining, as I prefer to be awake and see what is going on
As for DD Taxol #2, I did not have any SEs except some minor aches in my legs - nothing at all like DD #1 leg pain. So I am hoping #3 will be just as easy as #2.
For me I have one more Taxol treatment - DD Taxol #4 in 2 weeks. Then on to radiation.
Oh, I have not had any neuropathy issues at all. I have been on daily doses of B6 (one 100mg tablet) and B12 (one 100mcg) since I met my oncologist the first day at my initial consulation. This was the dosage he put me on, I did not come up with this myself. I bought the B6 and B12 at my local pharmacy, but you can buy just about anywhere. This treatment plan was supposed to prevent neuropathy. I don't know if it actually is the B6/B12 combo that did it, or if I just got blessed and didn't have it, but I am glad. If you are having it, maybe ask your oncologist about this and see what he/she says.
The other thing I'm thankful for is the Emla Cream! Been using it since infusions began with AC and have had no pain at all when they accessed my port. I will share what I was told, in case someone might be interested - The trick I used is what I was told by my ON at patient education: First, cut yourself a small piece of saran wrap that is about the size of the port that you see under your skin. It doesn't have to be exact or perfect, just small enough to cover the area. Get out a bandaid and have it ready to use. Then squeeze the emla tube to put a thick coat over the port area. It should be a layer that completely covers the top of the skin where the port protrudes under the skin, which is where they will access. Do not rub it in (it's not lotion). Make sure you can't even see the skin due to the layer. Then place the saran wrap piece on top of this cream layer. Then put your bandaid over the sarah wrap. The bandaid is to hold the saran wrap on the emla cream layer. I have read some people try to rub this cream over the port (you shouldn't rub it in) and others put a layer on and then put a bandaid directly over that. If you put the bandaid on directly over the cream, the gauze pad on the bandaid will soak up the cream and the cream will then be useless. Anyway, just wanted to pass this along - in case someone is wondering about this cream. But some of my chemo buddies let the ON use a numbing spray that is at the clinic. That seems to work too, but I didn't want to even try. I prefer the cream.
Hope everyone is doing well. Be positive, be strong, you can do this! Prayers for everyone.
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Paula, sorry that you didn't get your Taxol again. How are your eating habits? If you're eating mostly vegetarian, you may not be giving your body what it needs to rebuild those cells. I started getting low RBCs and switched to eating a lot of fortified cereals (some have as much as 60% of the RDA for iron), salmon, tuna, clams, baked potatoes, red meat, beans, raisins, walnuts, and spinach. Oh, and dark chocolate! If you haven't already, maybe try doubling up on those.
Disclaimer: My RBC is still low, but not enough to delay infusions.
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Paula...So sorry you are having such difficulty with the Taxol infusions. I have never had a transfusion -- I had #9 last Thursday. My neutrophils are usually in the 3-4 range. I chalk those numbers up to my diet.
Marleigh...I used the exact method as you, with the cream, when I was initially diagnosed with BC. I would wait and put it on right before I left the house, as I usually had a long wait with labs and onco visit prior to chemo. Sometimes, I would wait until I got there. The effectiveness wears off after awhile. This time around (since diagnosed with metastatic breast cancer) I don't use anything other than what the nurse uses to numb the area. I find it works just as well.
Lisa...Good food ideas for Paula. I've read where raw fruits/vegetables are a definite no-no when counts are low.
No chemo this week, as it's my "off" week. My 3-month scans are tomorrow. This makes me more nervous than the Taxol. I will see my onco next Thursday to see what's next in my journey.
Wishing all a good day!
Hope
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Hope, I didn't know that raw fruits and veggies were a no-no. If so, that makes sense while my counts have been lower because I've really increased the amount of fruits/veggies I eat. Most of the fruit is raw, and I occasionally eat raw veggies, too. Guess I'll have to stop that until my numbers rise. Thanks for the tip.
Praying for good scans for you!
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