Weekly Taxol group
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Fireheart438: thought I was a sissy about the port placement recovery process. Felt like the procedure was done with a branding iron for like days afterwards. Weirdly enough, after the paclitaxel infusions (have had 2 weekly cycles so far) it sort of reactivates that feeling for a while at the jugular vein incision even though the poison is contained within the catheter. Maybe it's just my imagination - I have a very active one I've been told! Yes, pull down that safety harness and hold tight. Wishing you the best with whatever lies ahead.
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Just to say for any newbies starting Taxol that I have flown through it with little or no side effects. For the first 2 I had a mini crash on the 3rd day but this was due to the steroids and these were reduced after that and I had no bad days for the rest of my infusions. I have just had my 9th infusion and no aches and pains, no neuropathy. I did have a tongue ulcer at one stage due to the fact that I got complacent about the mouth washes but the salt and water rinses cured this in a few days. I have found the Taxol a walk in the park in comparison to the AC which wasn't good for me. So for anyone starting don't expect any serious side effects as you may not get any. Best of luck to the rest of you with managing any you might have.
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keepmoving, I noticed you had neoadjuvant chemo like me. I'm still doing Taxol but like to know how was your tumor responded to the chemo and what opted you to do lumpectomy. Thanks for your inputs.
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reflect, roof cat, fire heart and keep moving: thank you.
I had my ninth taxol this past Friday and my MO lowered the dose a bit bc of neuropathy. I actually cried because I felt like I had failed somehow. Weird. My neuropathy comes and goes. massaging any areas that are tingling and going numb seems to really help. trying to calm down a bit. AC was much harder than taxol, I think I just started to freak out about potential permanence of loss of sensation.
I know it is hard for anyone starting out with chemo to read about others side effects. I can say that glutamine powder was very protective for me starting taxol. My side effects were more pronounced after my first taxol when I was not on the glutamine and completely stopped once I started taking it up until the 7th dose.
On a positive note, I have met so many survivors and incredibly kind people because of my cancer. This is not my journey, this is just a bump in the road in my life. Take care everyone.
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Katjadvm - You are so right. This is NOT our journey and is merely a bump. Did your MO recommend the glutamine?
Meeting with the nurse for chemo counseling on Tuesday. Feel like I don't know what to expect when I read the way that everyone is managing side effects. I hope that I will learn a lot more that day. I am not someone who likes surprises. I'd rather know all the possibilities and prepare myself.
Numb - Thanks for sharing your experience. It is encouraging to know that while the SEs are possible they may not happen. So glad you've been able to get through this so well.
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Fireheart, my MO recommended glutamine, so I started it a week before taxol. I also took B6, a B complex Vitamin and alpha lipoic acid. When I broke out in hives a month later, my dermatologist told me to stop taking everything, but I could continue the glutamine if I wanted. I took 10 grams (not milligrams) 3x a day. I got my first jar at a health food store, then got two for the same price on Amazon. I used the NOW brand.
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Thanks for the info, LoveMyVizsla. I will ask the nurse and MO when I see them this week about those options. Did the hives go away once you stopped the supplements? I would think it's hard to tell what's causing them considering all our bodies go through on a chemo regimen. Praying I don't get any. Once had a 10 month case of hives of unknown etiology. Probably the most miserable I'd ever been physically except for the day after my craniotomy.
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The hives went away because she put me on prednisone for four days. It took 5 days to go away, but once it was gone, it was immediately replaced by a rash that my MO said looked like a classic taxane rash. It doesn't occur very often, I just got lucky, LOL. I can't imagine having hives for ten months! I would go insane
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I am doing the same protocol as Lovemyvisla to keep taxol side effects at bay. Glutamine really helped. I take 10 grams three times daily and get it on Amazon. The Seeking Health brand. I also take turkey tail mushroom for immune support.
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I am going to buy some glutamine on Amazon now so that I have it ready. Feeling a little frustrated because the doc didn't mention this and my next visit with her isn't until 2 days prior to starting treatment. So glad I found this site and you wonderful ladies.
Yeah, 10 months of hives sucked. No other way to put it. We never found a cause. Just started bilaterally on my wrists one night when I came home from work. Thought i had a reaction to something on my shirt sleeves. Went through a ton of meds until we found the one that took care of them. I told my MO about this and have asked that my allergist be involved in my care if this happens again. She's a bit of a hives expert. I would rather go right to the med that works providing it wouldn't interact badly with the chemo regimen.
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Fireheart, the pharmacist at your cancer center should be able to tell you if your hives med is compatible with your chemo meds. I've been through months of itchy rash, so I know how it feels. You just want to scratch your skin off. Thank goodness for meds/prednisone.
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I don't know how to question this. I do self breast exam after each shower. My left underarm has the lymph node so it's little puffy. My right underarm has been flat but couple days ago it seemed to be slightly puffy. I freaked out thinking BC is on the other breast. Could it be while I'm getting Taxol every week? I don't feel any tumor on the right breast though. Does anyone have similar experiences? Thanks.
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Hi Houston,
From what I've read about IDC it would be very unusual for it to appear in the opposite breast, but you should ask your MO for sure.
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Houston: I had a similar freak out situation and even went in for an ultrasound. It turns out that since I have lost weight on chemo, the density of my breasts have changed. So my noncancerous side now has more prominent fat lobules. I took a deep breath and stopped palpating my breasts all of the time. Very stressful. Speak to your MO about getting an exam and quick ultrasound. Thinking of you.
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I had pains in my left breast (right one was the effected one) to the extent I reported it and I was told that because I had a lumpectomy on my right breast the left one was heavier and would be painful while my body adjusted to the fact that the left one was heavier. Best to have this checked out though.
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My heart doctor just called and said they had the results of my echocardiogram and I have some fluid around my heart. I have to go back and do another one. Has anyone else had this before?
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Saw a nurse for chemo counseling today. She answered many questions and gave me more info than I think I can ever digest. She wasn't familiar with using the glutamine, so I am definitely going to bring it up with the MO tomorrow. Also will be asking about a B complex supplement. May also inquire about supplementing with zinc - one of my go to winter immune support supplements.
LoveMyVizsla - Will be seeing my allergist Friday right before my first infusion. Between her and my MO I am counting on them to determine if the Dapsone would work should I develop a rash or hives. Definitely hoping that is not even an issue for me, but I'd rather prepare for the worst and be pleasantly surprised than to be blindsided.
cris8325 - Sorry I don't have any wisdom to offer about the echo. Had mine done on Monday and haven't heard anything from them. Will be thinking of you and hope someone who's been there can share their story.
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Taxol #12 done! Got my bell rung!
Peripheral neuropathy in my feet that appeared intermittently between Taxol #9 and #11 is gone. I think Reactine and sublingual B12 with more diligent icing helped. I will continue B12 until I run out (90 tablets). I'll take Reactine for another few days. My Taxol dosage was never reduced or delayed.
Weight - I gained about 6 pounds during Taxol. At 4'11", I don't have many places to hide them. I'd like to drop about 10 pounds starting next week once the cravings for carbs wear off. They do, don't they?
Hair - Taxol took almost all remaining hair from AC by the middle of treatment. I do have peach fuzz and patches of new growth. Will probably buzz in a week to get rid of scraggly growth. Eyebrows are sparse. Lashes - stopped looking for them. I will start the B complex vitamin. I use a mix of aloe gel and rosehip oil on my scalp daily for the past few weeks. During a weekly salt bath, I use a seaweed and aloe mask with rosemary and peppermint oil. In the past week, I can feel bare patches have filled in with peach fuzz from the day before.
I have rads starting sometime in September. I was hoping to get a real break from the hospital, but I have a small amount of swelling in my left arm. I was measured for a custom sleeve and glove and scheduled for 3 appointments with kinesiology this month.
Highly recommend black polish, icing, and B12 to minimize nail problems and neuropathy. And magnesium.
Good luck everyone!
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cris8325 - I'm sorry to hear about your echo results. Would you care to share why the echo was done? I've only had a MUGA scan before AC to check that I was able to handle adriamycin.
fireheart - It's a good idea to run supplements with your MO. In general, antioxidant supplements are restricted during chemo. Even green tea is restricted to a degree (between 0 and 1 cup depending on who you ask). During Taxol, I supplemented vitamin D, magnesium, melatonin, and at the end, vitamin B12. Getting antioxidants through real food is OK. I prefer foods that naturally contain the vitamin or mineral versus being fortified.
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SerenitySTAT - I don't know why cris8325 had her echo, but mine was done because the Herceptin I'll be on can cause heart issues. Had a baseline and they will be monitoring with follow ups every few months throughout the year of the drug. Totally concur that it's better to get our nutrition through food rather than supplementing. Just thinking ahead for the possibility of having to change up my normally veggie-based diet to more bland foods. Want to be prepared for all possibilities.
My theory is that the more I can do proactively, the more I will feel like I have some control in the midst of this out-of-control time in my life.
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I have to have an echo done every three months throughout chemo. I did ac for four treatments and i have done two weekly taxol/herceptin out of twelve. Number three is today. Will see what the oncologist wants to do...
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fireheart - I'm with you on being pro-active. I had minimal side effects from Taxol. For food, I found homemade jello as my first food after chemo helped. Gelatin is supposed to help heal your gut. Resistant starch is also good. I kept a container of either cooked rice or cooked potatoes in the fridge. The process of cooking/cooling/reheating increases the amount of RS. Usually ate them with eggs. Probiotics is good, but I got tired of it during AC.
cris8325 - I didn't realize Herceptin required the scans. I won't have any other scans unless I show symptoms, so I wondered if you had any. Hope they can correct it.
Recently I've been reading about the medications that we take during chemo and their effects on the levels of vitamins and minerals in our bodies. Based on what I've found, I've added B12 to the vit D and magnesium that I already take. I just searched on the words "herceptin depletes" and found this:
http://www.blockmd.com/blog/protecting-your-heart-...
I would ask your MO about the supplements in the link. I will ask my MO, too. There's no history of cancer in my family. Most of my relatives die from heart disease.
Something new I started to eat is black garlic. I figured it's real food, and I love garlic already. It's supposed to have more antioxidants than white garlic due to aging. It's really good with the rice and potatoes.Hope it helps the heart.
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After more reading, I will need to find the right CoQ10 supplement for long term cardiac health. Apparently, it's difficult to get enough through food. Any suggestions?
In the meantime, sardines will have to do. Fisherman's Eggs for lunch today!
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My ONC does echos every 3 months from dose-dense AC all the way thru Herceptin. The guy performing the scan though, said that she is the only ONC that is that diligent, and most do only one for baseline and then only another if there are symptoms.
On another note, just completed my 9th weekly Taxol, and everything was fine until I woke up this morning (day 3) and stood up to stabbing tingling pains in my feet. Eke! I thought everything was going so well since my facial neuropathy resolved after reducing does at 3rd treatment.
I know we've talked a lot about it on this post before but anyone care to update on their neuropathy? When it developed and is there a difference based on when it develops and whether it's intermittent? Now I'm nervous about finishing again. Maybe it's no big deal though? I just thought it would start with numbness and then only get to tingling or stabbing as it progressed.
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RubySlips - look above for my neuropathy story. Post starts with "Taxol #12 done". Did have the stabbing tingling pains. Reactine and sublingual B12 helped me. Hope yours improves.
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my MO had me add lipoic acid, vitamin B6 and frequent foot massage to help with my neuropathy. Worked thus far..
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#11 done. Soooo tired. And I just want to eat all the time, preferably junk food. Anything salty or sweet. Which is crazy, because I don't normally eat junk food!
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Fireheart, I think I posted the sheet they gave me on glutamine, but I can dig it out and post it again if that will help you. I showed up for my re-excision surgery yesterday and they gave me my wristband listing my allergies and paclitaxel was on it! They never reduced my dosage, but I skipped it once when I had the hives.
I think my neuropathy developed around week 9. Never had stabbing pains, just some slight pain and numbness. It is slowly getting better now that I'm a month out. But, 8 of my fingernails and one toenail are lifting from the nail bed. That didn't start until after chemo was finished.
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Hi, I followed up with my OC she felt the right breast said she doesn't feel anything. My left breast tumor is Alot smaller though. Have like 3, more Taxol to go and will have a full breast ultrasound in two more weeks to see status of tumor. For me I changed my eating to plant based as much as I can. I was never into sweet so it was an easy transition to healthy eating. For me Taxol is great it gives me energy almost normal, unlike AC😖, Except for the first three weeks of body aches, I feel great and was right back to work on fourth week. I don't have neuropathy may be just sore toes and fingers during the third David the first week. That's it. My OC now said I have to be without chemo for three weeks awaiting surgery. That kinda scare me a little wishing I can be longer on Taxol.
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Sorry there was a typo. I only experienced body aches during the third or fourth day after chemo of the second and third week. So Taxol is great never thought I would say that about chemo. Lol.
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