Weekly Taxol group
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frozentoes! Hello my fellow Minnesota BC butt kicker. Rant away, my friend! Sure you haven't had life threatening side effects but it doesn't mean it hasn't been hard. We all need to vent sometimes. You're going through chemo. that’s a big deal and a big challenge. The side effects are hard and exhausting after months of them! Ps I have the same nasal issues as you. Number 12 is next Friday for me. We are so close! Keep us updated if you have to do AC. I did AC first. Like Taxol how your body responds is so hard to predict. It was really hard for me but it’s a breeze for other people. I hope if you get it, you’re on the “breeze” end of things!
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Frozentoes- Thanks for sharing your rant as I just finished #5 and it is so helpful to hear what other people have been experiencing further down the treatment cycle. I feel you for just being sick of being sick and the treatment to make you better! I'm having almost all of the same SE as you are albeit not as advanced and it helps me to be better mentally prepared for what may come. Up till last week, I never experienced nausea after treatment and had been only taking anti-nausea meds the day afterwards, but now I'm feeling something akin to motion sickness every day and my NP told me to start taking my meds any time it came on. I'm also watching my finger nails lift off the nail beds and it is so frustrating when the only thing I can do is keep them short and watch the .... oh, and I'm breaking out in weird rashes on my sides, right next to my bra...sigh....I'm happy for both you and CIW for being at the end of the treatment and that you have had your tumor shrink! I'm in the same treatment plan, chemo first then surgery, and I know that both my breast and node tumors have shrunk from chemo, and it makes me feel good to know that what has been making me ill is killing the bastard tumors!
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Frozentoes, I have very similar SEs than you. I'll have #10 on Wednesday. I'm torn between feeling relieved to nearly have Taxol over with and petrified that once I get off chemo, my cancer will spread. I'm very surprised that none of the chemo sites mention the nose issues as being one of the SEs of Taxol. I've had a runny/bloody nose with nose sores for months. And lately my eyes have gotten really dry, too, so I'm having to use Artificial tears.
Ah well, the joys of chemo! Good luck with the remaining treatments.
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hi everyone, has anyone here had to deal with sporadic chills around day 2 or day 3 after infusion? No fever but just feeling cold randomly throughout the day... on top of a sweating bald head (which i think are hot flushes from chemopause) and mild tingling of fingers and toes (neuropathy.maybe it's the steroids?
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mkn, for Doses 1 to 3, I experienced chills on Days 2 and 3. On Days 4 and 5 I ran a low grade fever. My numbers all came back good and I was never derailed from my treatment plan, however when I reported that my fingers felt as if they'd been smashed in a car door, my MO reduced the Taxol by 25%.
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mkn86–sure do! I get chills and then hot flashes intermixed. I swear I’m either too cold or way too hot, but yes that’s common for me days 3-4. No fevers though.
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okay thanks lisa and CIW... first time i ever got the chills from taxol so i started wondering if it was something inshould worry abot
) hot flashes don’t help either. I’ve had to switch the fan off and on several times it’s crazy. but.. all things considered, least of our worries. Going for my last taxol this week.
then on to surgery and radiation.0 -
Hello ladies
I found the magic mouthwash great for the nose sores. Just use a q-tip couple times a day. Obviously doesn't do a thing for dryness or running, but it did heal the crusty sores. Hope this helps someone.
Vickki
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Good morning...
Sorry to hear all the nasal issues. Another side effect that I've managed to escape somehow. No chills, but I do tend to bundle up around the house more than usual. Some of you will soon be finished with your Taxol and hopefully all the side effects will disappear quickly. I have Taxol #9 on Thursday. Then will have scans the following week. Nervous about those!
Hope
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mkn86-I get the hotflashes and chills too, but I used to be one of those people that is always cold before chemo so I just figured it was my body trying to return to normal after each hot flash lol!
Vslush- I will have to try the magic mouthwash for the nares.
I can't tell if it is neuropathy related or not, but I am having a harder time gripping things. Has anyone noticed that before? I couldn't open the little package that benadryl comes in the past two days. It feels better today though. I mentioned this to my MO and he asked "Does it hurt?" I told him no, just feels weak, just like my feet and he said that as long as it doesn't hurt that we can continue chemo.
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Checking in from Atlanta after Taxol #3, Carbo #2, with a whole lotta pain. I had to take the mild narcotic my MO prescribed (just one) last night and the night before. I hope it's the Carbo. I had to skip last week - neutropenic, so I got saline today. I'm supposed to get Taxol #4 in two days and follow up with neupogen shots and more saline.
SE:
1. I can no longer open my iPhone with my finger. I don't have any prints!
2. Dry, dry, dry. Skin, nostrils, throat, feet, hands, toes, fingers. But I am wearing cold socks/mittens . . . and I've only finished Taxol #3.
3. Bone pain that is not neupogen. Sharper than what Neulasta gave me with AC. Gotta figure it's carbo. No mets, Stage IIIa.
<sigh>
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Nonahope- Prayers and positive thoughts coming your way for your upcoming scans
. Sammi-I have had a little bit of issues with gripping things lately from taxol, but that's a symptom I am actually super familiar with with Lyme disease. I have late stage neurological Lyme disease. Anyway, I share this because that can be a normal symptom of anything affecting your nervous symptom, and obviously taxol is one of those things. My oncologist did mention to me though to tell her if I start dropping things. I think it's something they might want to generally monitor, so you don't lose functionality. For whatever reason I've lucked out in the neuropathy department with taxol. It's very mild for me and it's only now that my nails have been slightly affected, but not bad. Not sure how I managed to be sick the ENTIRE time with AC, but taxol comparatively has been a breeze. Everyone's different.
For my sisters post-chemo--how do you manage the anxiety? It's like everyone expects chemo to be done and me just to be back to "normal." But there is no normal. I've spent this time in survival mode doing what I have to do, but part of this is terrifying. It's a lot to process having gone through from the mastectomy to the chemo. I want to get to be a wife, mother, nurse, grandmother and I am scared this will come back and I won't be able to do any of those things. Anyway, sorry for the long post. I just am still very scared that this is not actually over. Then again maybe that's just how cancer is...does it ever really end for us? Idk.
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CIW...Thank you! When I was post-chemo with my initial diagnosis, I never got to the point of being without anxiety. However, with each follow-up visit with you BS and onco team, you will be able to ease up a bit when the visits are over and all is good. I got more anxious when my visits spread out to a year, rather than the 3 month/6 month visits. After my 5 years post-chemo, I only had to be seen once a year. That created more anxiety for me than the more frequent visits. Eventually, you just get to the point that this is your new way of life. Best advice is to "stay positive" throughout this journey....although, it's not easy.
Hope
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Nonahope, I'm praying for good scans for you. I know it must be nerve racking.
CIW, I just sent an update out to my friends and relatives, and I mentioned that my biggest challenge is not giving into fear. It's especially difficult when you search the internet for good information on such things as a good diet or exercise program to help prevent recurrence, and you end up with a panic attack because most of the articles are gloom and doom. My husband often says, "Positive information doesn't sell newspapers." Just ONCE I'd like to see an article on TNBC mention that a vast majority (~80%) of women survive it. Yes, our numbers are lower than other BCs but would it kill journalists to not be so sensationalistic?
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how much your tumor shrink after one chemo ?
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frozentoes - I'm in FL and have many of the same SE issues as you. Full, congested nose for the last five months - even the ENT doc can't fix it so blames it on chemo which it probably is. Neuropathy in fingers and toes which may not go away. Have had chills and sweats, etc. I had my last DD Taxol on Friday and started taking Claritin before bed and so far have not had the bone and muscle pain I had last time which was something awful. This week started having some sporadic urine leakage which I don't know whether to chalk up to side effects or old age. Guess I will have to wait and see. Anyway, you will come to the last of it as I did. Now a bit of a wait until surgery which will not be too big as this tx has shrunk the tumor by at least half and the nodes. So, good news. Next week will fly off to the west coast with my new hubby for two weeks of no thoughts of cancer. I will see the BS tomorrow and hopefully have a date certain to get that part over with. Hang in there, girl.
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Lisa...Thank you...yes, it's nerve wracking prior to these scans. But, we have to do it. I have to agree with your husband...I find it very depressing searching for "positive" info...it doesn't exist anymore. I get most of my information from Cure magazine....it's free for cancer patients and I highly recommend. Some very good "positive" articles from long-term survivors and current treatments etc. There are some good books out there, as well.
Yanio...I had my surgery prior to chemo, so can't help you. But, I'm sure others will be able to answer your question.
Hope
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Gussy...Hip, hip, hooray! So happy to hear your treatment is over. Enjoy your next two weeks with your DH...I'm so happy for you!!
Hope
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So I'm two weeks past my last taxol treatment and everyone acts like it's over but side effects are still there. I still have radiation and herceptin to complete as well as starting a 5 year drug maintenance program. I have tried all through chemo to be strong so really everyone keeps telling how well I'm doing. Only my husband see how much a toll this has taken on me. I have to say I'm floored by the lack of concern from some family and friends as I have been going trough my treatments. So I know they will be even less concerned when you say you are done with chemo. I guess I'm sad to think that people I thought would be most concerned weren't but on the other hand I discovered how much others really care. Well now I'll just wait and see what's next.
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Hi ladies, thank you for letting me vent.
Looks like I didn’t get to end my taxol journey this week. They had to delay my treatment because my liver is in a bit of a tizzy. My ALT skyrocketed to 333 so now treatment is delayed, I’m on a high dose of steroids, and am no longer on the clinical trial drug. Hopefully the steroids help the inflammation and bring my levels back down so we can continue with the last taxol next week. But that also means the next phase is definitely AC so I need to start getting ready for that too. But the silver lining is that I get a week off from the muscle and joint aches! Kat - Congrats on the last week! Yay!
Gussy - Have fun in CA! And congrats on the shrinkage. That’s awesome news.
Bjquilter - I’m sending you lots of positive thoughts. I feel very similar in that I’ve had some people step up and be supportive and caring beyond what I thought they would and others that have kind have just fallen to the side lines. And others who seem to think everything is just like it used to be or will go back to that. I wish I had advice for you, just hugs
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bjquilter...Hang in there. Often times, people shy away because they don't know how to cope with someone with a cancer diagnosis. If they see that you always "seem" ok...I'm sure they don't feel it necessary to always be there for you. I can understand how you feel, though.
Frozentoes...Oh no! I've been there with the elevated liver enzymes...but not that high. I've never had to skip an infusion. I'm sure the week off will help a lot!
Hope
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yanio9- every person is different. I had AC before taxol and we couldn't feel my tumor after the first AC. I had surgery after my AC and before taxol and there was no sign of my tumor what so ever!
CIW- I am kinda nervous to be finishing too! I mean, no one likes having to get treatments and go to dr appointments. but they have been our guardians so to speak lol. Are you having rads?
Gussy- Congrats on finishing!!
Paula- I'm sorry you are having bone pain
. The one good thing about neutropenia is the occasional "vacation" from an infusion 
. Hopefully your counts improve and you can get your next infusion.Frozentoes- I'm sorry to hear about your liver enzymes. Mine were elevated too, my MO ordered an ultrasound which showed the liver was fine. Wierdly, they stabilized on thier own after a few weeks.
bjquilter- that sucks and I understand. My sister has gone so far as to say that I am a downer and that my cancer is an inconvience to her! I have tried to be patient and know that alot of people just wont understand unless they go through it themselves. It makes me appreciate my husband, mother in law, and my bff who have been my rocks.
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Hi, I am new to this forum. I had 4 AC that ended on 12/29. They had me nauseous almost the entire time. Now I am on to 12 weekly doses of taxol.
I have treatments of taxol every Friday. So far I have had 3 treatments and have had no side effects other than extreme fatigue. I've read about so many side effects that I keep waiting for the bone pain, neuropathy, nail issues etc. Do those come later in the treatment or is it a good sign that 3 in I have not had any issues yet? I am being proactive by taking Claritin for the pain and using nail envy and tea tree oil for my nails. Any other suggestions would be greatly appreciated.
Thanks
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Hello ijenks,
I never did AC, but I know people have commented that weekly taxol is less intense then AC. I finished taxol #7 and will have taxol #8 on Friday. I have been constantly checking my nails, but really have not noted any changes. I use nail strengthener and Biotin. I have had little to no neuropathy- I feel feel tingling sometimes, but then it will be gone just as fast. I had 2 days of bone pain way back in the beginning, nothing since. I think my only complaint is fatigue and I'm nauseous for the 2 days after my infusion. I bought a lot of things to counteract the SE's but really haven't needed most of them. I'm just hoping it continues and I don't start getting slammed with them towards the end. Anyone have SE's that didn't kick in until the end of chemo?
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Jjenks—Taxol seems to be so varied for everyone. I had AC and was extremely sick. Taxol has been a breeze comparatively. My 12th Taxol is this Friday and it's still way easier than AC ever was. As for what developed second half: my neuropathy started second half (but it's mild) and so did my bone pain. My nail changes started a few weeks ago. They are slightly darker but overall still doing pretty well and I don’t think I will lose them. You can’t really tell they look different unless you look close.
Best of luck to you! How your journey goes will be unique to you. But if you’re feeling good (comparatively) ride that wave and maybe it will last! Taxol really hasn’t been too bad for me.
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CIW
congrats on being on treatment 12. I hope the rest of mine go fast and uneventful. I will just keep up on the Claritin, nail envy and tea tree oil and hope of the best. I'll take feeling well for as long as possible and "ride that wave"
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Shay76
good luck on treatment 8. You are so close to the finish line. I take zofran right after treatment to avoid nausea. Have you tried taking anything right away to avoid getting sick?
I guess I will continue doing what I have been with tea tree oil and nail envy and hope for the best with my nails. Losing them scares me.
The fatigue for me has been way worse than I thought. I hope that doesn't get worse as my treatments continue. I work and go home and barely have energy to do anything at night. I am lucky to have a great support system with my husband and kids.
Best to you as you finish your taxol treatments
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jjenks, you might experience a cumulative effect with Taxol, but I just finished #10 and I'm tolerating the SEs quite well. I immediately got neuropathy in my fingers, as well as chills and fever, and then reduced my dosage 25% after #3. I still have mild neuropathy in my fingers (I can still pick up objects, but they are pretty numb most of the time). I didn't get neuropathy in my toes until around #6 but it hasn't gotten any worse and can be managed with Aleve.
That being said, please don't fret and think that it's not working because you're not getting SEs. I had a really easy time on AC (more so than Taxol #1 to 6), but a mammogram and US showed that my tumor had disappeared. So no correlation for how badly you feel and how well the chemo is doing its job. Everyone is different, including how they metabolize these drugs.
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Well I'm done with taxol but the neuropathy hit at treatment 11as well as mild buzzing in my ears. Now 2 weeks after my last taxol the ringing is much worse. Has anyone else has this happen? Is there anything I can do about it?
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bjquilter - yes, I have tinnitus, which I had before but it's worse now. Also some sort of metallic reverb in my right ear. Hope it goes away just like everything else I've got going on i.e atrial fib,neuropathy, fatigue. I don't know that there's anything that can be done about it except wait and see if time takes care of it.
Saw the BS today and March 5 is surgery day if A fib is unter control. Having third cardio version tomorrow and meds seem to be doing some of the work. I sure hope this doesn't screw up the works for surgery as I need to get this crap over with. I promised my DH a normal wife and a normal life asap.
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