Weekly Taxol group
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Hadn’t thought to ask the office, but that’s a great idea! Thank you!
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I am done with Taxol, as of last night. I know the AC is likely to be harder, but I am still so happy!
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Congrats yellowb!!
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Congrats yellowb! AC is reportedly harder but not for everyone
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I am 44 and have recently been diagnosed with invasive ductal breast cancer. This is my second primary cancer. I was diagnosed with stage 3 melanoma in 2014 and did chemo for a year as part of that treatment. It was a horrible year and nervous, scared and angry that I am going to have to do chemo again. I had a bilateral mastectomy on August 30th and met with my oncologist yesterday to discuss my treatment plan. The plan is for me to do Taxol weekly for 12 weeks and then Herceptin for a year followed by hormone therapy. I just don't know what to expect and I know that chemo reacts differently for everyone. I have a wonderful oncologist and he took the time to answer questions but now I have more questions since I have had time for it all to sink in. I was wondering how long the infusion time is typically? I am a teacher and would like to continue to work because it is a lot more work to be gone and I had to use so many days for my melanoma treatment plus I am taking 4 weeks for my mastectomy surgery that I will have to start to take days without pay. I'm nervous about not being effective at home and work. I'm really nervous about throwing up? Just plain scared. What should I expect with this chemo regimen? Does anyone have any tips?
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SisterStrong, I had Taxol treatments, once a week for 12 weeks. The first 6 or 7 took between three and four hours each. They'll get a blood sample first and send it to the lab. That's one thing that takes a while. If the bloodwork shows that you proceed, they will ask their pharmacy to prepare your chemo. When it arrives they start the pre-meds including a steroid, something for the stomach, benadryl, and I don't remember if there was anything else. The benadryl is noticeable, and I liked the mild "buzz" and it can make you a bit drowsy. I didn't ever nap, but lots of other ladies did. Then they will start the Taxol. After a few weeks, they started a faster drip, so I got down to about two hours total, or a little more.
If the doctor prescribed anti-nausea pills, fill the prescription and have it with you. My nurse said for me to take the first pill before I left the chemo center that day and to take it as often as prescribed, not to wait until I felt queasy. Well, I never did feel queasy and after the first few treatments I only took the pill right after my appointment and maybe one at bedtime. Eventually I didn't take it at all. I was thankful not to have any nausea. Even so, most food didn't taste like it should. Oddly enough I craved fish filet sandwiches from McDonald's and they tasted good to me.
Do you have a port? I'd recommend it if that's an option for you.
Some folks here iced their hands and feet (?) to help reduce the chances of neuropathy. I didn't know about that so others will give you good advice about that. I do have bad neuropathy in my hand.
Drink extra water the day before, the day of, and a couple of days after. This treatment will make you very tired, especially starting two days after when the steroids wear off. I couldn't have worked during it but we are all different. Wishing you all the best!
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Thank you for your response . I am scheduled to get my port placed in a couple weeks. I am not excited. I had my other removed once I was done with the melanoma treatment. I am dreading the saline taste. I truly hated that.
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Yellowb.. I rereaed my response and realized that it sounded like i was trying to scare you! yikes,, i am so sorry
i didn't mean that. I meant that just because AC's rep can be that its harder doesn't mean it will be harder for you and you might be totally fine with it.
plus I know people who did fine with both.
I am pretty sure that having 12 weeks of any treatment under your belt to get routine in place has made you aware of your body and prepared to react when needed and that will help too.
Again sorry for sounding so negative!
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Dear SisterStrong - of course you have questions after your MO visit - it's just a rapidly moving blur for awhile. So much information to process at once. Inger will be a good one to talk about a work schedule. Unless you have a very unusual chemo center that stays open extra late, you probably will need to take a half day of work off while getting the taxol. My experience says, get it on Thursday or Friday as the second day is usually the hardest. Insomnia the first night but you'll have lots of energy the first day but then sort of crash. I'm guessing your will find the chemo easier than what you had before although you probably will have some fatigue and joint pain. And you will lose your hair and it will do bad things to your nails. I wish I had had permanent eyebrows done. My fingernails stayed fine because I stayed with my usual nail guy and got gel nails regularly. I did lose a toenail on each foot. I learned quickly that I could manage the constipation/diaherra cycle if I was cleaned out before the infusion. I had been taking a probiotic and added mirolax. Took a laxative the day before as necessary. My biggest SE however, was neuropathy which started about infusion 6. My center didn't support icing for hands and feet and no one cold capped but you will find people here who will share their experience with that if you want to consider either of them.
Once you are on herceptin only, it's a pretty short visit. The first infusion is usually done in 90 minutes but if you do OK, they can shorten it to 30 so you can get a 3:00 appointment (you didn't say how late your had to work) and it will only be every 3 weeks. I had no nausea with the Taxol although I did take nexium for acid reflux. I was VERY glad I had a port. I was also glad I had it placed about 10 days before the first chemo as it was healed and established. I personally had NO SE's from just herceptin although you will need to have an echo every three months as it can be hard on the heart.
If you haven't found it already, please join us in the triple positive group. It's a scary diagnosis but our prognosis is actually quite good. Stay close. We're glad you found us.
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SisterStrong I'm now six weeks PFC and tolerated Taxol/Herceptin pretty well. I had my treatments on Friday mornings because I wanted my weekends—the first few days are easy. I was typically at the infusion center from about 9:30-1:00. Yes first the blood work, then the premeds (an anti-nausea med, a steroid, an antacid, and Benadryl), then the Herceptin (90 minutes the first time, 30 thereafter), then the Taxol (60 minutes). I did not have a port (my MO preferred I try it without—she said it's just one more surgery, one more scar, one more reminder) and I did fine with the IVs. I usually took the anti-nausea meds for a day or two but never felt like I needed them. I got a little neuropathy in my feet toward the end but not bad. I ate a *lot* of protein (red meat 5-6 times a week + a protein shake every day) and my blood counts were good throughout. I didn't miss any work other than a half day on infusion days.
I feel like if you're trying to preserve your work days, you might want to schedule your treatments for Tue or Wed afternoons. You might have heard Taxol referred to as “chemo light"—the SEs are generally not as bad as other regimens. Go into it with a good attitude and I bet you'll do just fine.
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I had my first taxol / herceptin treatment Friday. It went well and I have felt fine just some minor bone pain. Hoping it stays this easy. Thanks for all the tip and ideas.
Ginger
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One down, Ginger—that’s great
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@pcranky, I didn't take it that way! I know the AC is generally tough, especially if it's second. I keep reminding myself to get prepared.
@SisterStrong - my Taxol treatments were an hour. I got them Friday afternoons, thinking I'd be ready for work by Monday -- and I did work -- but Monday and Tuesday turned out to be my tiredest days, not the weekend. So it varies quite a bit from person to person.
Make sure you really drink a lot of water throughout! I aimed at 100 oz a day, usually made it, and I could tell it helps with the neuropathy (gets better right around the 4th bottle of water, every day, whenever that 4th bottle happens.)
I would also suggest having some probiotics and prunes on hand. The taxol can attack your digestive flora and fauna, and I was treating all kinds of results of that (heartburn, constipation, bloat) with OTC drugs until I figured out some Bio-K and an occasional prune could replace them in a much kinder way. Again, side effects really vary. It wasn't until this week, leading up to my 12th and last taxol, that I was still tired when treatment day rolled around. Good luck!
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@pcranky, I didn't take it that way! I know the AC is generally tough, especially if it's after Taxol. I keep reminding myself to get prepared.
@SisterStrong - my Taxol treatments were an hour. I got them Friday afternoons, thinking I'd be ready for work by Monday -- and I did work -- but Monday and Tuesday turned out to be my tiredest days, not the weekend. So it varies quite a bit from person to person.
Make sure you really drink a lot of water throughout! I aimed at 100 oz a day, usually made it, and I could tell it helps with the neuropathy (I didn't get neuropathy til the 10th week, but it gets better right around the 4th bottle of water, every day, whenever that 4th bottle happens.)
I would also suggest having some probiotics and prunes on hand. The taxol can attack your digestive flora and fauna, and I was treating all kinds of results of that (heartburn, constipation, bloat) with OTC drugs until I figured out some Bio-K and the occasional prune could replace them in a much kinder way. Again, side effects really vary. It wasn't until this week, leading up to my 12th and last taxol, that I was still tired when treatment day rolled around.
Best luck!
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question: I’m a couple weeks post chemo (AC&Taxol). Did anyone have any issues with stomach bloating? I gained 20 lbs during treatment but this is different. It’s definitely bloating. It’s uncomfortable and I look 9 months pregnant! (Maybe more like 6 monthsIf anyone else experienced this Idk like to hear about it and when it subsided.
Thank you!!
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I appreciate all the responses. It is so helpful to read how others have handle this treatment. I do understand that everyone will react differently but it is helpful to have information going in. I'm going to contact my MO case manager tomorrow to ask some addition questions after reading these informative and inspiring posts. I believe I have my first treatment on October 13th but my husband didn't get that impression when we met with him on Friday. I am going to have an echocardiogram on September 20th. They were able to schedule it the same day that I already had a CT scan scheduled. It was scheduled for my melanoma diagnosis before I was diagnosed with BC- ironic
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yellowb - congrats on being done! I am right there with you. I finished my last Taxol this past Wednesday and now I"m just riding out the last of the SEs.
SisterStrong - I am so sorry you have to go through chemo again. I can understand the fear. I was diagnosed with BC at 36 and the future scares me a bit. However, I will say that - like most here have - everyone is different with the SEs they get. And if you're going to make this journey again, weekly Taxol hasn't been that scary to most on this thread. I got a little of everything with Taxol so I'll repost what I wrote a few days ago and add some info I've learned recently (I hope it helps you!):
Fatigue: I took naps but I know you plan on working so I would say that towards the end of tx, that's when I got tired most. I'd run one errand and want to lay down. Just prepare yourself for the possibility of that.
For neuropathy: Drink lots of water! I did about 70 oz. day before, of, and after treatment day (and one nurse said to make sure it's room temp, as cold water constricts the blood vessels and can contribute to neuropathy 🤷). I also took a B-complex vitamin, which was recommended by another nurse.
Muscle aches and pains: Claritin helps. Though, as I reached 9-12, muscle pain increased. It never got so bad for me that I needed Tylenol but if it helps, why not?
Muscle/teeth tension: muscle relaxers help with this and I took Klonopin specifically but that's because I had bad anxiety with AC (my prior treatment) and later made the connection that it helped. Then my MO confirmed it. This is what bothered me the most and the anti-anxiety med I took helped a ton but also made me sleepy so be aware of that.
Dizziness: I found later that this was due to dehydration. Even though I drank a lot of water, it seemed tx was very dehydrating and contributed to my dizzy spells.
Sinus/ear pressure: for some reason, a nurse told me tx causes more fluid buildup in the sinuses. Ultimately, this led to me having ear pressure/pain and I've been on daily Flonase and Zyrtec. Occasionally, I would take Benadryl too. But that's only if it got bad and wanted some sleep.
Chest pressure/heart burn: I had never had heart burn before so the chest pressure was something new for me. I later found that it was heart burn and took daily Prilosec to help with the pressure.
Of course, I took A LOT of pills and I figured, while on chemo, I would try and survive and do my best to treat anything that was ailing me. Overall, I did very well with Taxol and felt the SEs were not too bad but it seems that because of the steroid you take on chemo day, once it wears off, that's when the SEs surface more.
Always, always let your doctor know if something is bothering you; especially if it's neuropathy. They can help if any of the "management medications" aren't.
We are all with you on this journey.
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I have just been promoted to Taxol, so here I am 😀 After AC, I really really hope this will be easier.
I had my first dose 1/12 yesterday, with Herceptin.
Today, I feel normal. Unbelievable. No fatigue, no nausea, nothing. I guess the SEs will creep in, but I allow myself to stay hopefull.
I am doing feet+hands icing, but I was thinking yesterday - can't my cancer-side hand be damaged? I already had my operation, so I am thinking about lymphedema possibility...
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JaBoo, I'm on week 12 of Taxol and the SEs -- well, I do complain, but they are pretty light in the scheme of things, and I didn't have any until week 4 or so.
My docs did not recommend icing for me, btw, so I wouldn't feel compelled to do it. I do have a little bit of neuropathy in the mornings, but it doesn't get in the way of anything -- it just feels like my fingers are feeling through thin gloves. I am told it might take a couple months to entirely go away.
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JaBoo and Ginger, I'm so glad to hear that your first treatment went well and yellowb CONGRATS on being on week 12.
I have my first treatment on Friday, October 12th, i finally got my drains taken out on Monday and I feel so much better. I go tomorrow for an echo cardiogram and CT scan and I am getting my port on September 27th.
Thanks again for all the responses and tips. It helps tremendously.
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thanks for the post. I will start Taxol and Herceptin on Friday. I was told to ice my hands and feet and I will try it. I already have neuropathy in my hands due to MS. So I don’t need anymore. I plan to work through Chemotherapy. I have to if I want to keep my health insurance. I also take an immune suppression drug for MS which has it’s own side effects. Which leaves me worried. Both the oncologist and neurologist says it ok to take chemo and the MS drug but company that make the drug say it shouldn’t be used with other drugs that affects your immune system but asked your health care provider. Sometimes I feel like a test subject. Well we will see what happens
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asknomore2, that sounds kinda nerve-wracking. Fingers crossed for you! I've worked through Taxol, though without Herceptin -- not undoable so far.
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I start weekly Taxol and Herceptin next week, aka Chemo Lite. Because I'm also a type 1 diabetic they are not going to pre-medicate with prednisone unless I develop allergic reactions since the prednisone side effects for me can be awful/dangerous. Nervous about the potential of neuropathy, I think I'm going to try to use ice therapy on hands and feet. I'm also getting conflicting info about hair loss on this course. Med Onc said my hair would thin, but made it sound minimal. Then the pharmacist said I may not go completely bald but hair will be so thin you will be able to see my scalp. More than anything else, I do best when I know what to expect. Can anyone tell me how their hair did on this course? How bad was the fatigue? Anyone else also a type 1 diabetic? Thanks
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Hi, Erin110400 - I'm not a diabetic; hopefully there is at least one in our group for more specific answers. But I'm just finished with my 12-week Taxol, and that was my first course. I do still have hair, but it's very thin and you can definitely see my scalp -- I'm guessing there's maybe a sixth of it left, evenly distributed. Some people on here have said their hair started to grow back before the 12th week, I believe. My oncologist had advised against cold-capping because I'm so likely to lose it all on the AC, which is up next.
I'm also just now, after the end of the 12th week, having significant nail pain and neuropathy - I think hints of it started around week 10. It's worst in the morning, and then improves by afternoon.
Editing to add: I had some real fatigue the fifth week, when my blood counts were down; and after that, some lesser fatigue on the 3rd or 4th day out from the infusion. I think I missed three days of work in total (I worked 6 hours in the morning on the chemo days).
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Erin--I decided not to mess with cold capping or icing, but I figured if the point of icing was to keep the hands/feet cold to minimize chemo to those areas, I did purposely wear sandals to every tx and also turned down the offers of blankets/what-not to keep my body as cool as I could. I didn't develop any neuropathy at all until the last 3-4 weeks, and it only showed up a little on the bottoms of my feet. None at all in my hands.
Re: hair, what I read is that despite Taxol being referred to as "chemo lite," it is one of the tougher ones when it comes to hair loss. Allegedly 96% of patients lose their hair, which I certainly did. I did have some that survived the process, but I cut it so short (1/8"), it was kind of hard to tell how much was left. My nails have some discoloring but they're more than half-way grown out and I expect them to be back to normal soon.
Re: fatigue, I got more tired through treatment but it was never awful. I didn't miss any work other than half days for treatment, although I didn't have much energy in the evenings--my husband pretty much took over shopping and cooking.
Best of luck--it should be pretty non-eventful early on. In fact, I think most of us had more SEs from the premeds, especially the steroid, so you'll probably feel fine for a while at least.
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I finish 4 cycles of AC and now 10 of 12 Taxol. I am worn out. I am dizzy and tired all the time I have neuropathy on hands and feet. My potassium has bottom out. I see the onco Tues. and at this point I don't know if I can continue with this constant pain. The AC was not a problem. My onco is leaving and I am getting a new one hopefully she will be better. On the bright side I see I see the surgeon on Friday to start scheduling the surgery. The MRI said I no longer have a tumor. So the the chemo has work . Thank God.
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Chemotherapy was postponed again. I now have a cellulitis of the breast they stitched closed this past Monday. In addition my incision is opening up again. My surgeon was beside himself. He wants me off from work for 4 weeks. My Neurologist cancel my MS treatments to allow me to healed.
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Oh gosh, asknomore. Here’s to speedy healing and a quick return to treatment.
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Thank you. One good thing is I made it to my grandson football game.Next week if I am to start treatment I won’t make it to his game. But he understands
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Erin- yesterday I completed 6 of 12 Taxol and Herceptin weekly infusions. So far no neuropathy at all and I didn't try the cold capping because so many reported that it really did not help much. I have lost about 85-90% of my hair. It started to come out 13 days after the first treatment. Within about 7 days the majority of the loss was over. As soon as it started my DH broke out his hair clippers and we cut of all off to about half an inch. It made the fall-out easier to deal with and minimized the mess. My scalp is still really tender and I am colder than I used to be- this is a good thing living in Florida! I wear caps and scarves while in public and at work and nothing on my head while at home.
Other than the expected hair loss, my biggest issue is Fatigue. I am still working about 30 hours a week (including the drive time) down from the usual 50 hours. It's had to describe how tired I feel and impossible to positively- think my way out of it. So, I am learning to listen to my body, save energy for the things that matter to me and let the rest of it go. I have tons of support at work and home so am very fortunate, to be sure.
I hope these experiences are helpful to you. I know that all of the sharing that goes on here has been so helpful to me. We are most fortunate to have this as a resource. Best wishes to you!
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