Weekly Taxol group
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Today I have had a lot more general pain, all over, which has not happened before its tended to be more painful in one area or another......is this a sign that the Taxol is working? Its day two after chemo 2.......
Are there any reputable articles on what effect chemo has on MBC in bones? Do we make new healthy bone? Or are we left with bones like osteoporosis.....very weak?
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Lily55 - maybe you should ask this question in bone mets thread. Send you a kiss
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I had my #10 taxol today. 2 to go! I can see the final line. 💪
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Hang in there Yndorian!!
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Hey there. I will start weekly Taxol next Thursday. I was hoping if you could tell me if you Iced your hands and feet, and if you think it helped stave off Neuropathy? I really hate being cold, but am willing to endure it if it helps in the long run. Also, what did you use to ice?
Also, I had a conversation with my Dr. on FMLA. The paperwork indicates that I will have less issues on Taxol from my AC treatments, but by reading some of the posts it looks like there is a cumulative impact? Were you all able to work through the whole 12 weeks of treatment?
Sorry for all of the questions. I am bouncing back from the 4th AC, and I have this horrible salty taste in my mouth. It is ruining all my meals. I am guessing taxol will make it worse.
Hope you are all doing good, and have minimal SE.
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Hi Yndorian. We are on the same schedule. I also did 10/12 today. The light at the end of the tunnel is getting brighter! We can do this!
I’m starting to develop a small and intermittent tingle in my fingertips. Fingers crossed it doesn’t get too bad and goes away post chemo.
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Kber, I think your will be fine with neuropathy. Mine seems to be stalled. Mi principal SE at this time is the dyarrhea and my veins vanished. We are in the final of the first part in this 3 parts marathon( chemo/surgery/rads) and it is the worse part I hope so go on! Kisses
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notdefined I did not ice but tried to keep cool in treatment—wore open-toed shoes, didn’t take any of the warming blankets, . . . I got a little bit of neuropathy on the bottom of my feet but that’s it. I worked through tx but did not have AC before.
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Yeaay pleased for you Yndorian and Kber....have you noticed a difference in your symptoms, I mean symptoms of cancer rather than chemo?
Today I have had a LOT of pain, had to take all my additional pain medications which I have not had to do for weeks.......and it has been more intense.....I am not sure if this is a good or a bad sign?
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Thank you Ingerp. Good to know. 12 weeks of icing could be intense for me, but as I said if it reduced the likelihood then I would try it.
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lily - I’ve definitely had weeks where I’ve been really bone sore. I think this is a side effect related to the killing off of blood cells, triggering bone mallow to try to make new cells quickly. For me it led to muscle and bone pain. Aleve and Claritin seemed to help. The oxy based pain meds first gave me did not help. Neither did medical marbut I’ve heard others had better luck there than I did
In my case,I’ve done chemo prior to surgery and my tumor has shrunk from lemon sized to not palpable. That’s the main cancer effect. Chemo sucks, but sometimes it really works.
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Lily55: when I was in AC chemo I had low wbc counts 3 times and I had more bone pain this days. Like kber says, It seems to be our bones working hard trying to made more wbc. During taxol I have being feeling muscle pain all the time. In the other hand I had pain in the tumor several times during chemo and it size is now 1/6 than it was so in my case the pain was a good thing. I don't know how is it in bone mets. Good luck and kisses to you!
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I'm too proof that taxol and Herceptin worked miracles as neo-adjuant. 2 of my tumors were nonexistent at surgery and another one shrunk 200%. Although cancer was found in both of my Left Sentinel nodes it wasn't present in my axillary nodes. So I calling it a success !!
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Nanette- it is a sucess for sure! Did your armpit positive to cancer before neoadyuv? Mine was. My last US shows normal nodes (MO call that total remission) but complete armpit nodes remotion is still the plan.
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Notdefined, I finished my Taxol two weeks ago. I have lost 14 pounds because of the bad salty taste in my mouth. Just about everything tasted awful. Now I’m getting some of my taste back. The excessive salt is finally leaving.
The neuropathy is terrible, causing problems with my feet, making my walking troublesome. I just started taking vitamin B6 for the problem. We shall see if it helps. My hands seem to be getting better than they were.
My tumor has shrunk & the cancer in the other side can’t be seen on the PET scan. So it appears that the chemo has done it’s job. I won’t have to have radiation, so after having the mastectomy I will be finished except for taking Letrozole to kill my hormones. I will be on that for a very long time.
Nanette so glad the Taxol worked for you. I’m hoping my nodes will be clear also.
Dorid
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Hi notdefined,
I took intermittent FMLA for all my chemo days. I didn’t realize intermittent FMLA was an option until the cancer center told me about it. It was great not to have any commitments those days. I finished treatment 11 today.
I worked the whole time, though I have the ability to work from home a few days a week. I feel worst after the steroid crash, about 72 hours after infusion
Initially, I had severe stomach pain (for about 6 weeks) as my only side effect. The steroids they give as premeds often cause a red flushed face and insomnia. I’ve had both each time.
Later, I developed chronic nose bleeds. I have bone pain on days 3-4 post-infusion. Worse at night. The other side effect that appeared after treatment 6 was a rash on my hands and arms up to my elbows. It gets better due to the oral steroids given as premeds and worse once that wears off. The steroid cream they prescribed does little and sun exposure makes it worse. I’m also on Herceptin, which can make rashes worse
After treatment 10 (last week), I developed neuropathy on my left foot, that radiates up my calf and I also have some in the fingers of my left hand. I used Dignicap to save my hair and iced my hands and feet with ice packs from Amazon. I didn’t keep them on the full infusion time. I was just too cold from the cap to tolerate it. Today, the MO cut my Taxol dose by 20% to hope to improve the neuropathy.
11 down...1 to go
As for its effect on the cancer, I don’t know. I had surgery before chemo. I sometimes worry about that.
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Pommom1809-I've not heard of B6 being a helper of neuropathy. Do you think there is value on starting that now? I have one of the MTFHR mutation which inhibits my body of absorbing several b vitamins, folic acid, as well as makes me prone to blood clots. Great to hear that the cancer responded to the chemo! Congrats on being done with that phase, and I hope your surgery goes well. I will be doing the same as you, mastectomy on left side after treatment and hopefully no radiation needed. I know that is determined by what has been impacted. I have that salty taste from my 4th AC, and it is tainting everything I eat. It is very depressing to not able to at least have the ability to enjoy food.
PennyK-Congrats on almost being done! I have requested intermittent FMLA as well. My dr. only gave me until the 3rd week of taxol on the expected leave, and I asked him to extend it to cover the full 12 weeks. He seemed to infer that I won't need it, which I hope he is right. But I told him I still need to leave work for the weekly treatments. I am having them done on a Thursday, and hope that the weekend will be my time to recover.
Thank you dearly for sharing your experiences. I was feeling like the finish line is so far away, but I will do what has to be done.
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notdefined please continue to push for the FMLA taxol is cumulative meaning SEs will build up. Fatigue gets worse for many of us along with aches and pains
yndorian no my lymph nodes didn't show cancer before taxol .. it showed up at surgery 5 weeks PFC
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will be joining this forum soon. My mom is doing her AC #4 on the 22nd then 12 taxol. Her SEs have been minimal except feeling very fatigued on AC 3
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Pennyk: sorry what is FMLA? I't seems to be a bit late to ask because I am in my #10 taxol but I'm curious
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FMLA = Family Medical Leave act. If you work in a US facility with 50+ employees you may apply for medical leave to addend to the illness of yourself or a family member. It is unpaid. Some employers also offer short term disability to partially offset income loss as well.
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Kber- Thank you! I thought it was some kind of supplement!! Jaja
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I thought the same thing you did. I scheduled infusions on Fridays thinking I’d have the weekend to recover. However, I feel great on the weekends. The steroid crash occurs about 72 hours after treatment. That’s when most people feel the worst.
My MO recommended 100 mg of B6 and L-glutamine supplements for neuropathy. If you me body has issues with B6, you could try the Lglutamine instead.
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Be sure to check with your employers. Mine had a serious illness leave that pairs with FMLA that gave me 8 weeks of paid leave that didn’t deduct from my sick leave. I didn’t even know I had that benefit.
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Penny I scheduled my treatments on Fridays specifically so I’d feel pretty good on the weekends. I didn’t mind not feeling great on a work day. ;-
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Not defined I just started the B6 don’t know if it works or not, but why not try it. My feet are causing me such problems. I can’t hardly walk because of the bumpy feel to the bottoms of my feet. I keep grabbing things to keep myself from falling. I still have intermittent pains in my legs from the Taxol, plus my legs are so weak & tired. It takes so long to get this crap out of our systems. At least my hands aren’t as bad as they were, I still have odd colored nails. They haven’t fallen off yet.
I’d feel pretty good until about the third day after Taxol, then I’d be so tired & my mouth would have several sores inside. The sore mouth has finally subsided.
Doris
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Thanks all for the information.
My job has assistance with fmla too. I only have to cover 4 of the 8 hours I take off. I didn't know about it until recently, but it was a great relief. It will allow my meager vacation time to cover more of my time off.
I will talk to my MO about the B6 or Lglutamine. I am not 100 percent sure that he looks at my record as a whole. He okayed me to fast prior to AC, but I don't think he realized that I had my gallbladder removed. My liver enzymes were through the roof right before AC no 2, and we all believe it was due to the fasting. He said nothing about the SE of taxol, only that I shouldn't need as much leave off. I did push back, and tell him that he needed to extend my fmla till the end of treatment to at least cover the doctor appointments. Thankfully, he extended it with the same amount of leave during AC.
I was planning to take the Friday after treatment off, but if it comes to me needing to take the following Monday off instead I should be able to do that.
Can you tell me about how long does the steroid crash last for? Is it more than one day? Also, my employer is allowing me to work from home, so maybe that will help me?
I've already started to have chemo brain. I had to take my phone in to get it repaired, and I could not remember the pattern to unlock my phone when I got it back. I had only a few attempts left, before my phone threatened to wipe all my data, and I had to call in to a meeting that afternoon! I had to drive to my kids' school, and interrupt my sons' recess to ask him to unlock it for me. It was so embarrassing! It is probably the only time I have been grateful that my kids know my password/pattern.
Pommom1809 sorry you are having such pain with your feet. I hope that in time, you will get some relief. It sounds very uncomfortable.
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Pommom...please get your primary or your MO to look at your mouth.. when on taxol we're very prone to yeast infections of the mouth ((hugs))
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notdefined—I didn’t really have a steroid crash. In fact, it seems about half-way through Taxol my body had adjusted to the steroid and I didn’t even get the energy/hunger from it. My pattern was tx Friday, feel pretty good Sat/Sun. Start to feel droopy late Sun, Mon/Tue were the down days, although I never felt bad enough to take off work. Then pretty good Wed/Thu.
I also never got the sleeplessness some women get following the steroid. I didn’t really need the anti-nausea meds but took the one that can make you drowsy for the first few days—I think that helped with sleeping.
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Hi Ladies!
My mom had her first taxol/carbo today after four DD AC. She is sneezing a lot afterwards and having a runny nose. Can she take Clartin to relieve the symptoms? What do you recommend?
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