Weekly Taxol group
Comments
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thank you for your response. You’re right about taking quality of life into consideration.
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Quality of life is a great way to look at it. I have my last Taxol this week and I just can't wait to get some energy back. The last few have made me so tired.
Looking back, I'd like to share what has worked for me and what I've learned during tx treatment:
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.
Muscle/teeth tension: muscle relaxers help with this and I took Klonopin specifically but that's because I had bad anxiety with AC and later made the connection. Then my MO confirmed it.
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.
I wish you all the strength you can manage and hope you find your tiny triumphs through this excruciating way towards better health. ^_^
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thank you JackyR!!!!
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No problem, cccmc2! It looks as though we got some of these things in common. I sure hope all goes well with you, as it did me. I’ll say, overall, this was way better than AC for me. I had a dreadful time with that one
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JackyR - thank you for sharing your tips! That's so nice from you and I really appreciate that. I have been following this thread for some time, as I'm starting weekly Taxol this week, together with H
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Okay I might be delusional but I think I have some peach fuzz. I've had a few pretty long hairs and even more hairs that are maybe 1/4" long but they've been there all along and didn't seem to be growing. But I could swear I saw/felt what seems to be more all-over peach fuzz this morning. Guess I'll know for sure in a few days/week or two?
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Ingerp, that's great! From peach fuzz to cute pixie to long flowing locks!!
JackyR, thanks for sharing your tips! I've done 6 of 12 weekly Taxol (did AC before Taxol and it was awful) and the SE's have not yet been too bad. Just a little tingling in my feet the day of tx, a little heartburn and a little bone pain/achiness. I did much better hydrating during AC, just because it was so awful and I needed to really up my protein intake too. I have not heard about room temp vs cold water. Is that just during tx or all the time? My taste buds were really messed up by AC, were okay for the first few taxol and now are a little wonky again and I struggle with room temp water.
cccmc2, quality of life is so important! Good luck as you move to the next phase of treatment, radiation?
Good luck to everyone else with tx this week! 6 down and 6 to go for me!
Kim
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kdrake congrats on being on the downhill slide!! May the remaining six weeks go smoothly for you. :-)
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kdrake I'm just getting started on the Taxol (2nd week tomorrow), and first week was not too bad. -- manageable. My place (NYU, NY) does taxol first and then AC so I'm pretty much spending the next 12 weeks being afraid of what AC is going to be like... they have reasons they think this is a better order, but the anticipatory anxiety is going to be a bit much, I think.
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pcranky, I'm doing the 12th Taxol this friday at NYU, and then onto AC ... I find it really is best not to think ahead too much!
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yellowb - Im' doing my best not to think forward, and also to just keep repeating that whatever it is, I can handle it, sometimes I even believe it!
Congrats on making it through round one.. do you go straight into AC or take a week off? Will wave in the general direction of floor 5 next time i'm there, even though its a different day
For what its worth for all the bad I read the three people I know personally who had AC managed it ok, I'm trying to focus on them.
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I get two weeks off before the AC -- I cannot wait. I don't even have to go in for blood tests. I feel like a kid about to go on summer vacation.
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kdrake
I couldn’t do water very well during chemo, nurse suggested Vitamin water(I liked the lemonade flavor) and Gatorade. I’m 9 weeks done from chemo and just getting where water tastes good again. Good luck..you can do this!!!
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yellowb & pcranky - AC, particularly the A part, earned the Red Devil nickname as far as I'm concerned. But, it's survivable, just not very fun. Hydrate lots and eating lots more protein really helped me, as did Zantac for the heartburn and Claritin for the bone pain from the Neulasta. I'm cold capping and just learned that Taxol before AC has a much better success rate than the AC before Taxol. Wish I had known to ask if that was an option for me! You can do it!
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jaboo,
I found Taxol to be way better than AC so I hope the same is for you. I was so nervous starting Taxol after AC too but it really has been a lot better.
Ingerp,
Way to go on the fuzz! It sure brought hope to see my hair grow in during Taxol (even though it was thin). I can't wait for it to really start growing).
Kdrake,
I've had several nurses who all seemed to have tidbits of information that helped me through. Apparently, ice cold water can cause blood vessels to constrict or tighten. That's why room temp was recommended. However, I completely understand about your taste buds so just do the best you can and survive! I was also told that the wonky tastebuds is why I craved salty and sweet stuff so much. My body just wanted to taste something! Goodness, this hasn't been a ride.
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kdrake1007, my doc actually said that it was reasonable to disagree about whether Taxol should go first, and if I went to Sloan Kettering they'd do it the other way -- that there were studies that could reasonably support either order. In case it puts your mind at ease!
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I was diagnosed on August 7th and had lumpectomy on my right breast on 8/23. I just had a telephone consult with my doctor and she told me my 3 chemo options and wants me to research and decide during our appointment on 9/13.
My histologic grade is intermediate (score 6 of 9), tubule formation 3 of 3, nuclear grade, 2 of 3, and mitotic rate 1 of 3. I'm triple positive (ER+ PR+ and HER2 +), my margins were clear and 0/4 nodes, tumor size 1.5x1x0.8
Before my conversations with my oncologist today, I had read through the boards and thought TCH would be the standard treatment. I also met with my cancer naturopath (she is associated with the cancer center) and she had thought it would be TCH and talked me through supplements and advice for this.
And TCH is one of my options, but my oncologist said it would be her last choice because she said my cancer is slow growing (I think, she was talking fast and it was hard to understand) and that TCH would definitely give me neuropathy.
The other 2 choices are AC followed by paclitaxel (taxol) and herceptin OR Paclitaxel + herceptin
She recommends the Paclitaxel + herceptin because she said it would be less likely to cause neuropathy, but reading through this taxol board, it seems many people are still getting neuropathy.
Also, of course I don't want chemo side effects, but I also really want to survive cancer free. My oncologist said I will also get radiation after chemo and then hormone targeted therapy for 10 years since I am ER/PR+. Does anyone have any data or statistics on survival rates for triple positives who do the paclitaxel (taxol) + herceptin and followed by hormone therapy?
Is anyone else triple positive and getting taxol+herceptin followed by hormone therapy? It seems most people on this board are doing AC also
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Yellowb - that sounds glorious! I'm only barely in and i'm already tired of doctors offices.
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kdrake
I couldn't do water very well during chemo, nurse suggested Vitamin water(I liked the lemonade flavor) and Gatorade. I'm 9 weeks done from chemo and just getting where water tastes good again. Good luck..you can do this!!!
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carotomp I did a lot of research here as well and knew before I met my MO that she would recommend Taxol and Herceptin, which she did. It’s the standard for women with my tumor type. It sounds like you and I are very close.
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Carotop I had a very aggressive very fast growing ER PR positive tumor and we were waiting on the Her2 results from the FISH. My MO told me because it was so aggressive he recommended the AC + T and he would add in the Herceptin if her2 was positive. I know this is sometimes unfavorable combo because both Adriamycin and Herceptin can affect the heart, therefore I was relieved I was Her2-. It was presented to me in a way like I had to do it for the best chance with a very aggressive tumor, if yours is not so fast growing then its nice that they are giving you other options.
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Pcranky, yellowb - I just finished dose dense AC and it is definitelly doable. I had side effects, which were stronger after each round, but they were always gone before the next round. now I feel totally OK, like nothing happened. well, apart from the hair. I had to shave my legs yesterday, ugh! I think my hair is growing back - but only from the knees down! 😀 I'm starting weekly Taxol tommorrow.
Carotomp, I am also tripple positive, but my stats were different, so AC was neccessary and I knew that. I just wanted to say there is a wonderfull "tripple positive group" where you can ask. there are some very knowledgeable ladies always willing to help.
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JaBoo - thank you!
And figures about the leg hair. I remember my brother having chemo years ago and lost the hair on his head but not the hair on his back. so unreasonable!
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Thank you for the responses--I will also post on the triple positive board as suggested.
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Hello everyone,
I have been reading this thread and is helping me to go through my cancer journey. I have done 4 AC before and now i am on 12 weekly Taxol. I have 4 more to go, cannot wait to complete the Chemo. So far the nephropathy hasn't kicked in yet, thanks god. Other SEs are bone pain because of the neutrophil .Only Taxol was not working so the OC added the carboplatin along with Taxol. Because of Carboplatin, my WBC count was low so they decided to give Neutrophil every day. Neutrophil is helping so far to increase the WBC count and preventing me from infection
I have appointment next week to discuss on the surgery and reconstruction. We met with the Radiation doctor and was recommending not to do the tissue expander before radiation because it might block the radiation to reach the cancer cells in my left breast and lymph node. So me and my husband are little confused which path to follow.
I cannot wait for my chemo to be complete and get the hair back. Currently I have seen very tiny flurry hair growth which is something to look forward.
I wanted to ask you ladies how strictly are you following the food intake. I haven't restricted myself to any kind of food yet but i try to eat more plant based food. I still go out to restaurants, theater and parks but sometimes i question myself am i not being enough careful on what I am eating and places i am going. I have heard that Infection is very bad.
Do you have any suggestions?
-Thank you
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The conventional wisdom is to eat what tastes good to you while on chemo. I increased my protein significantly (red meat and protein shakes), which I believe is why my bloodwork was so good through treatment. I also craved sweets (which is common) and ate a lot of ice cream, which I didn’t do before or after chemo. I think it’s more important to focus on what you’ll eat going forward, after you’re finished.
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Does anyone else have really bad muscle aches? My shoulders feel like they have been tense for so long they have turned to stone! They hurt
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Gracie - I was going to massage therapy pretty much weekly throughout taxol and it was wonderful.
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Moth, I’ll have to check into that. I live in a very small town so don’t know who here might be qualified
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Gracie, maybe your cancer center will know a registered massage therapist? I started going because there are indications massage therapy could help with peripheral neuropathy as well and that's such a big issue with Taxol https://www.cancertherapyadvisor.com/side-effect-m...
And it felt really nice to get all that tension out of my back and arms. I had 1 hour long massages and my RMT always found at least one knot in my back that he had to work out.
good luck!
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