Weekly Taxol group
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I'm one whose vision definately get worse with Taxol and it has not improved although I didn't have any floaters. New perscription about 6 weeks post Taxol and I am beginning to think I may need them checked again although it hasn't been quite a year yet. Also having lots of dry eye problems. The snog in Phoenix is terrible right now.
Downdoggie, my hair certainly didn't "come back even". I was completely bald for several months but I really hated the growing out phase worse than being totally bald. And did I miss my eyebrows, especially since I have always been a klutz with makeup.
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My eyes have been a bit off since chemo -- it is taking longer for them to come to focus from far to near. I was told it could also be due to the hormone blockers (Lupron).
I did have weird vision issues during last Taxol. My peripheral vision was light little dancing lights. I actually got quite scared, I also felt really drugged and out of it. The nurses took my bp and shrugged it off saying it was likely due to dehydration. I'm not so sure about that.
Good thing the weird lights eventually went away.
One last Taxol on the 11th.
The fatigue is starting to settle in. It might be also because I am just so done with these treatments, mentally, physically. I've been running on adrenaline for the most part. Time to rest and gather up strength for the next round --- radiation in July.
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Amelia--congrats on having the <sort of> finish line in sight! At least one of the finish lines. Do you have an appt to start rads yet? I'm just curious what the typical delay between chemo and rads is.
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Ingerp - three weeks from last day of weekly chemo until rads.
Radiologist was pretty firm on the timing.
I’ve been prescribed 15 sessions of dose dense rads on Tomography machine.
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Thanks, Amelia. I like to get rough schedules in my head. Will you start an AI? If so, when
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Thanks to everyone on the vision input! I feel like my vision is the same, except for the weird floaters. They come and go and sometimes are worse than others. This, too, shall pass!
Amelia01, Enjoy your break between chemo and rads! It was not super fun having them at the same time. Double whammy. I survived and glad to be done with it all now...I know I definitely had a few days of emotional induced fatigue ~ just wanting to be DONE! I know the physical fatigue is VERY real, but the added emotions (I'm 99% strong and positive all the time, but it did get to me sometimes...) certainly don't help the feeling of just being 'over it'.
It's kind of funny because my last Taxol was on the 1st and in my mind I figured, hey, now I'll feel good! I was ignoring the fact that I still have some rough days (or longer?) regaining my energy. Mentally, though, I am feeling so much spunkier now! Every day I'm excited to see new hair growth. It's totally white (grey??), but getting longer. I'm so weird...I'll pull on it to see if it's real! It seems to come out easier than normal hair. I dunno. I'm guessing it will be another 6 months before I have a semi-normal hair do. My hair was super curly (and long) before, so I'm super curious to see what I end up with!
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Hi, I'm new here and I'm not even sure I'm doing this right but I just completed AC and started Taxol today. I wanted to see if there is anyone going through treatment now and how they're doing. After AC, I was very nervous for what this would bring. Just looking to connect, share, and uplift each other through this journey
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Hi JackyR!
We want to welcome you to the community here at BCO. This is a wonderful group who will support you through this next leg of your journey
The Mods
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Hi Jacky, tomorrow is my Taxol #6 and I too had AC before.
For me, taxol has been much easier so far0 -
Hi Moth, 6 down. That's awesome! I've heard that some people react better to Taxol than AC. How did you do with AC, in regards to side effects? Because it was horrible for me. I had really bad nausea, loss of appetite, sensitivity to smells, etc. Also, did you find anything that helped you with any of the side effects?
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Jacky, I ended up in hospital with febrile neutropenia twice while on AC & had bad mouth and throat sores and huge fatigue. I did have loss of appetite & sensitivity to smell, but my nausea was well controlled with the anti-emetic medicine protocol.
I've had no nausea at all on taxol, my appetite is back (I've gained weight since I started taxol), my energy levels are much higher. My sense of taste is still way off, but even with the screwed up taste buds, I'm eating well. It's really been way easier ... & so far, no signs of neuropathy.
I hope it goes easy for you as well.0 -
Checking in from the no-AC-first group. I have a sense that women who have had the heavier duty chemo drugs first have more issues with the Taxol than those for whom it's the first (and only) chemo drug. I'll have #4 tomorrow and really no appreciable SEs to mention. But I do think the newness of it all/adrenaline is gone. For the first time I'm not exactly excited to be heading into this one. It'll be good to be 1/3 done but eight more still sounds like a lot. (Or maybe it's the new dog we got on Sunday--it'll be the first time I've left him that long and I'm a little nervous about it. I'll be out of the house about 4 hours--poor little guy.)
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Ingerp - I hear you on the leaving dogs the first time! Stressful! Fingers crossed it will be ok. The dog we adopted in April has not had lots of experience being left alone and we've been slowly easing her into it (& she's never really alone as my other dog is at home with her). Luckily on my long chemo days, my living at home college girl has no classes so she looks after her.
Long ago now I adopted an adult dog and had to leave her at home for over 8h right on the next day! I left her loose & I was so nervous to see what I'd find when I got home but I think she just explored a bit and slept. She was pretty stressed from being in the shelter that I think the quiet of the house was a relief for her. But this new youngster gets bored and then finds stuff to chew. Lately she's been going after pens & it turns out we leave tons of pens lying around all over. She's training us to clean up better :P0 -
JackyR,
Congrats on completing AC. It should be a huge relieve. To me taxol x12 is nothing compared to AC. So much tolerable, even though the SEs probably last longer. I'm 2weeks PFC and the numbness and tingling are still here.
The first few might be bothersome but trust me the last few will just be done without you noticing.
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moth--I just got back from being out about two hours and all was well. I do think they mostly sleep when we're not home, and we have two other dogs to keep him company. (They probably don't know what the heck is going on--they used to be outside or have the run of the house, but now everybody is being shut in the kitchen.) And the new pup is training us pretty well. I learned today that keeping that extra roll of TP on the floor in my bathroom was pretty stupid. And we're slowly putting things we care about up higher than they have been (shoes, purses, power cords, . . . .)
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Hi, everyone,
I finished my last AC last Friday and start paclitaxel on 6/14. I am really happy to read everyone's posts about how they are tolerating taxol.
I have a lot of trepidation going into paclitaxel, and I know a lot of it is unfounded. I have done really pretty well with the AC SE's. So there's no reason to be as anxious as I am. I guess part of it is that my MO told me that 80% of the AC-T benefit is from the AC, and the paclitaxel only accounts for 20%. He also said that if I can get through 8 of the 12 infusions, he would be happy. All that makes it hard to get my head around 12 more infusions, and weekly at that! It sounds so daunting.
The emotional part of chemo is such a struggle....
Thanks,
Linda
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Isn't it interesting all the different views of the MO's? It goes to show, there isn't really a consensus about treatment. They are all just doing their best with what they have. (And we are all doing our best to handle it!)
I think Ill ask my MO about carboplatin.
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Moth, thank you for your feedback. Yeah, I didn't have the troubles you had but my nausea was the worst! I'm glad you did better with the taxol. My first taxol treatment went really well and I'm kinda wondering if they build off of each other and get worse bc I was told that happens. I also did really well with AC the first time and then got worse each week. I guess I'll take what I can get for now. I just got my appetite back too so that made me happy. Small victories!
Hariry, thank you for the words of encouragement. I'm so pleased to hear that people did better with Taxol and it makes me hopeful. Hope! Finally. Also, congrats on being done with chemo! Woo Hoo
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Linda2119,
Thanks for posting about the 80/20 rule for AC-T. I really hope that's the case. As for me, I just started my first taxol treatment this past Wednesday and did really well. No side effects so far. However, with AC I also had a good first treatment and then nausea got worse with each treatment after. So I understand being nervous about 12 weekly infusions. I'm with ya girl. On this emotional roller coaster. Let us know how your first treatment goes
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Hi everyone, I finished my last AC a few weeks ago and I was sooooo happy because SE's from #3and 4 were really rough and I felt like I absolutely couldn't have handled going through that one more time. However the first two taxols were not that easy for me either and they switched me to abraxane for the third which was today. I seemed to have an extreme inflammatory response to the taxol and pretty severe bone/muscle/joint pain that started on day 3 (spent all day in bed severe generalized pain, even hurt to take deep breaths) but then continued throughout the week(though not as bad) so that by the early afternoon each day my generalized pain was so bad that I had to take narcotic pain killers and rest. It was much worse than what I experienced with the neulasta injections. I also had much more fatigue. In fact, the best day of the week for me was the day after infusion, probably cause of steroids. My MO thought it was an abnormal amount of pain and that some people react to the solvent the paclitaxol is in(its usually what causes the allergic reactions) and since the abraxane doesn't have that ( albumin bound paclitaxol) people tolerate it much better. However insurance doesn't like to pay for since it is a newer version and apparently ridiculously expensive. Thankfully it was approved and so far no noticeable side effects. Also they don't have to give steroids with it--the only premed I had was Zofran and then abraxane was only a 30 min infusion. I expect I will have some muscle and bone pain since that is a side effect of paclitaxol, just not as extreme as what I experienced before---I felt like I was going to have to spend the next 10 weeks on the couch on pain meds. I also started some supplements to prevent neuropathy and help with the myalgia: L-glutamin, L-carnitene, B6, and B12, doing epson salt baths. I'm hoping for the best and at least it sounds like most people are doing well on the weekly taxol. Into the single digit countdown now, only 9 left!
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I finished Dose dense AC and will go in for the third Taxol on monday. Till now Taxol has been better than AC. However, Taxol effects are cumulative. So I do not know how I will fare in the coming weeks.
No premeds for the third Taxol, do not know what to think about that. My nurse seemed very upbeat that my body has tolerated it well. Me not so much. Apart from no taste and some aches I am kind of okay. Oh the pains can get really bad at times. My nurse said to take your temp and make sure you do not have a fever before taking any painkillers so that you are not masking an infection. Hot water bags help. Keeping busy helps. Staying off google helps a lot too.
Have a lovely weekend ladies.
mLghtn, hugs, I hope you are feeling better now
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I only had Taxol but my reading of these threads for almost 18 months, it is my impression that those who do AC first, generally find Taxol easier. In fact, I have heard taxol called "chemo lite." While I lost all of my hair, many who do AC first report hair beginning to return on taxol and other SE's are easier to handle. I took, and continue to take, generic claritin for the joint pains. I wasn't nauseated but did have bad heart burn and took nexium all the way through taxol (my daughter told me just tonight that there is now a generic nexium). My biggest problem early on was the constipation/diaherra cycle(spell check isn't making sense of this so hope you can). I continued my probiotic and took miralax daily and if I hadn't had a BM 24 hours before taxol, I took a laxative too. Hydrate, hydrate, hydrate. If you can't do quarts of water, try green tea, diet lemonade, or flavored seltzer. Try to get a little exercise, even if it's only a short walk.
I did have painful neuropathy by week 5. I stopped at 8 infusions and it went away fairly quickly. (My MO said her recommendations about continuing or stopping is related to lymph node involvement). My biggest long term SE was a significant change in vision. I gained about 5 pounds from the steroids which I have managed to lose but seem to be stuck there. I don't think my hair is any curlier or grayer than before but it seemed to take a very long time to grow in. I missed my eyebrows more than my hair.
My experience is that a cancer diagnosis is more of a slog than a sprint. The finish line is farther away than we want to acknowledge in the beginning. I didn't realize how relieved I would be when my port came out after my last herceptin in January. I have now logged 13 months of AI's but that still leaves me a lot of months to go.
If you are new here, hang on. Come back often. Talk to your MO about the SEs you are experiencing but don't get ahead of yourself in anticipating the worse. Just like our diagnoses are the same but different, the reaction to various phases of treatment are too.
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Hi All,
I'm a week out from my final Taxol. I headed to the coast to celebrate and get a break before radiation starts. In terms of residual SE's, my feet are still numb and tingly; I had a hideous teenage acne breakout all over my face; my stomach continues to be queasy; my fingernail beds hurt every day. I polished them to give some protection, but should have months ago. The good news is that I have some energy! I was able to do quite a bit of walking and each day more than the last. That makes me hopeful
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Hi taxol 'graduates' - thanks for checking in and letting us know how you're doing now!
I had my 6th today and it was a breeze. My neutrophils are still normal so the best part was eating tons of salads the last couple days (when I'm neutropenic I stop eating raw veg - steamed or roasted only; I was missing salads a lot during AC!)
A bit wired from steroids so did an extra long walk with the dogs in the evening, then ran around the garden with the pup, then did a 30 min Zumba dance party in my kitchen to youtube vids from my favourite choreographers. I'm going to end with over 12k steps on my fitbit for today. Now a quick epsom bath & reading in bed before hopefully getting some sleep.0 -
For Ingerp and all....
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Congrats to those finished and those close!!
Egads--I love that you remember me every week. #4 today--I'd say yesterday I felt what I'd call fatigue for the first time, but it sort of came and went through the day. (Might be a combination of the chemo and the new dog. ;-) ) In a way I'm looking forward to the pre-med steroids today--should give me some pep! Other than that I can't say I've had much in the way of SEs so far. *Except* I decided last night that I'm going to track down the longest buzzer attachment we have, have hubs buzz me after work today, and then immediately go out to dinner. I still have quite a bit of hair left, but am just tired of the long strands coming out.
Who else is doing Fridays? That ice cream cone is big enough to share.
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Checking in after #3 yesterday. I was very tired immediately after - had to delay a nap because I'm coldcapping so had to wait three more hours. I got a little sleep, and then the steroid hangover hit for the first time! It was strange to go from being so tired to not being able to sleep in a matter of an hour! It took me a while to remember that I had a prescription sitting in my medicine chest for just this situation. Popped an Ativan and got a good night's sleep!
My most annoying side effect continues to be the weekly migraines, but I am familiar with them and know how to manage them, so I'm not messing with anything yet.
25% of the way through these treatments - cheers to everyone who is on the same road!
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#4 was uneventful, as they all have been. Had a check in with an NP—everything looks good. I asked her how common it is for people to get sent home for low WBC counts and she said not common at all. I’d really like to keep on schedule. (I think she also said they tend to drop initially but then level off?)
I’ve been taking a picture each week. Below is from today. I wonder when I’ll ever have hair this long again??
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Hey gorgeous! Rockin #4 like a pro. I wouldn’t buzz all that hair yet! You look splendiferous....and yes, you will see long hair again!
Give cancer just one of those fingers...you know the one of which I speak.
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I really am tired of the long hairs coming off everywhere. I think it’s time. (Egads you would love the bajillion pics of my kids in which at least one of them is flipping me off. It’s kind of our family thing.
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