Weekly Taxol group
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Zoziana, yay swimming, you go girl! I am so happy for you, (my hubby says props to the 90 yr old guy, but yay you for passing him!!)
I had 3rd taxol today. 1/4 done!! I am taking zantac, it does help. I have tums when it gets really bad, but have to be careful cause that contributes to the constipation. I also have found that the aloe vera juice, while horrid to taste, is really helping with the burning insides with just a couple swigs. gonna get some more tomorrow at whole foods. I had a subway salad at lunch and lots of fruit and it was easier to go. If I can manage it with what I do or don't eat I think it will be better.
AS far as the museum, it sounds fun! maybe you can rent one of those electric wheelchairs and leave everyone in the dust! I had a really nice visit today with a college friend who drove up to spend the day. it was great to chat and play scrabble and pick oranges. The simple joys in life go a LONG way when you can forget for a while that you are a cancer patient. I will have to ask my friend if I can use her pool to swim. It sounds like it would help. I iced my feet today along with my hands, hoping that helps. I am so glad to hear from you, my husband and I have been praying for you and will continue to do so.
You are strong and brave, you can do this!!
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I am going in to have my 8th Taxol treatment later today (4 left after today! WooHoo!). Although I heard from many people (my onc, nurse, etc) that Taxol would be much easier than AC, and although it is in some ways, I am really suffering with Taxol. AC was tough in terms of nausea, acid reflux and fatigue, but I had at least one good week between treatments. With Taxol, I have two good days, Monday and Tuesday, before the next treatment. Also, since the side effects are cumulative, after each treatment, the bone and muscle pain is worse, and the fatigue is much worse; as well, my left heel hurts all the time and makes me limp, I now have a fever on days 4 and 5 (a rare side effect of the Taxol), my red blood count is low and I may need a transfusion, and I am exhausted! To top it all off, I have gained weight (thank you, steroids!) and I feel like shit. My doctor is telling me not to worry cuz I'll lose the weight after my treatments, and the side effects will also go away, but I am really struggling.
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Citrineff: So sorry to hear you are having a such a sucky, bummer time with taxol. I finished round 3 yesterday. Had a lot of foot pain last week, but iced my feet as well as my hands this time and today is better so far. MY Hgb dropped last week too, and same, they are monitoring it, but I am a lot more tired, out of breath and brain blasted since after my second round. I feel ok, and then it creeps up on me. Be strong, do fun things that you enjoy, be good to yourself and let folks help you! I don't like my not brave days, I hope that you get thru this one. God loves you and has a good plan for your life! He can take all these shattered broken pieces, even from cancer, and make something beautiful from them. He is my faithful foundation in this broken crazy world. When I am not brave, I can stand on his promises. Crank up life affirming music and it helps drive the dark places away. Blessings to you, i will be praying for you, and have been keeping everyone here going thru this stupid necessary fight with me!
A
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OH! viktoryak I just saw this!! I am so sorry!! Yes - you must get a fresh pair after 45 minutes!! That new cold SUCKS but it's just bad for like 3 minutes. I hope you're doing well and not having trouble!!!
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Citrinetiff, you don't have to take the steroids!! Just say no! I only had that and the Benadryl for my first taxol. When I didn't have a reaction, they dropped them for my second infusion. Why be more miserable than you have to?
I'm going for #7 tomorrow.
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labscientistmom thank you so much for your support and prayers. It was exactly what I needed to hear as I waited for my treatment to begin.
LoveMyVizsla Thank you for the suggestion. I will speak to my doctor about it.
I now have 4 treatments left! I am so looking forward to the end of chemo.
On a happier note, my hair is growing back. You can barely see my scalp! I have read that this happens sometimes with Taxol, but I am not sure if I'll lose it again. Does anyone have experience with this?
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Citrinetiff you are so welcome. We gotta support each other. Talking to friends today, and was struck by the fact we gotta keep our eyes on the end of the race. We are intrepid turtles, one day at a time, slow and steady wins the race. Happy news about your hair!! Being week 3, I know that mine is doomed, agonizing waiting for it to fall out. its texture is different, but no dropping yet. I am enjoying one more day with hair even tho I don't feel too good today.
Day 3 after 3rd round taxol, I feel headachy, body aches today. Making a point to eat lots of protein, it does seem to help. For the low blood count, you can ask about epogen, which is the RBC bone marrow stimulant like neupogen. The down side is it takes a while to boost your Hgb, so for your heart and brain, its better for transfusion to keep you healthy. You need that oxygen to your system NOW. Hope they stay on top of it, mine dropped 1 gram in one week last week, which seems like a lot to me. It will be interesting to see what tomorrow's labs bring.
Blessings, A
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Hi all!
I'm new here and feel kinda crazy after reading these.. Taxol is kicking my butt! I feel like it's hitting me harder than AC.. I go to my fourth taxol treatment tomorrow and this last round I started having severe shortness of breath! Anyone else experience this? I'm at a loss and don't know what to do. It's really affecting my day to day life.
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Hi Amanda and welcome! I know how you feel because it was the same for me, taxol was much harder than AC, I thought I would never make it to the end. My recommendation, make sure you talk to your MO tomorrow and tell them everything you're experiencing. When I got shortness of breath and palpitations my MO was there within minutes and I got a week's break while I had it checked out by cardiologist. Then after the 6th round I just couldn't hack it anymore and she switched me to dose dense: higher dose of Taxol which was really a killer, but only once every 3 weeks, so instead of 6 final infusions I only had 2. As long as you tell them, there's usually something they can do to make it easier.
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Hi Amanda,
I agree with Maya, tell your MO about shortness of breath. I've had the same and had an ECHO to check my heart (AC can cause heart damage, lovely, right?) My heart is OK (great!) but shortness of breath continues. I just had Taxol #4 (after AC). I may be "deconditioned" from lack of exercise through the chemo. I'm working so I do walk around a fair bit (teaching) but not enough. So I'm going to make myself do more (not hikes, no energy!!). We'll see if it helps.
Taxol is easier for me than AC but not exactly "easy". I'm started having some tingling in toes and fingers, have you? This is my big fear with Taxol. I think good communication with nurses and MO is very important.
Good luck, we should finish at the same time!
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Amanda: yes I have asthma and have noticed more shortness of breath my second and this third week after the steroids wore off. did you tell them what happened? I have been reading a lot about taxol, it has a LOT of hypersensativity side effects. That's why the weekly doses are easier to take relatively, and why they so aggressively premedicate. Allergies can develop over time, and usually get worse with exposure.
reflect: consider some ice packs or double ziplock bags of ice in/on your hands during the taxol infusion. I had a lot of finger pain the first week, but used ice packs the last two rounds and it has been much more minimal. I had a lot of pain,& numbness in my feet last week, but used ice during this weeks infusion and they are much, much better. Thanks for the suggestion about heart echo, I need to talk to my MO about my symptoms too, probly wouldn't hurt to get echo as well.
blessings to all, A
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I had my last Taxol 2 weeks ago today, but this last round seems to have gone out with a bang. I was doing really well through all 12 but the last time I became nauseous, had horrible diarrhea, my skin has been breaking out, and I had extreme fatigue. All of that did begin to fade with time, however, as of a few days ago I'm a mess again. I developed a staph infection on my inner thigh, diarrhea is back, and last night I was so dizzy it actually woke me up. The dizziness has continued through this morning and I'm having trouble walking.
So, this morning hubs and I are off to urgent care to see if anything can be done for the staph infection and if the dizziness is enough of a problem to warrant concern.
The fun never stops!
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OH, MissBee, hope that you are better soon! I will be praying for you. Love your smile! and I am impressed with how lovely look! (I know, I know looking lovely is stupid when you feel like chit! Hang in there, sounds like you are almost done!!
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Just found this site! Sorry for the long post below.
My treatment plan is 12 weekly Taxol fusions and then 8 weeks (every other week for a total of 4 AC fusions). Which after reading some other posts, I'm really freaky out about :-{ Then 5-6 weeks of daily radiation and then reconstruction surgery. The fun never stops...basically two years of this.
I'm using the cold caps (Elasto-Gel). I have three caps that my husband rolls in with a cooler full of dry ice. I put them on 15 minutes before the chemo fusion (during the premeds), swap them out every 30 minutes. The chemo usually last an hour. I keep them on for 15 minute after the chemo is done. I compare these caps to having an ice cream headache for about 10-15 minutes every time I swap (They are chilled to -20F to -30F!). Very painful. The things we do to keep our hair!! BTW, still have hair on my head but the rest seems like it's thinning :-( Not sure it's worth the extra pain. I may embrace going bald.
During my first Taxol, my face flushed all red and they had to stop the drip, gave me steroid and slow down the Taxol drip. That seemed to help. My Rx - Antivin (nausea and anxiety) and Compazine (nausea) and Narco (pain, prescribed after surgery), which I took right away. Unfortunately, I had the worst case of constipation the next day from the nausea meds. Had to resort to birthing breaths, Milk of Magnesium and Aleve to relieve the symptoms. Horrible!! I now drink soluble fiber and take a stool softener everyday, which has helped.
I just completed my 5th Taxol. I have started taking Benedryl orally which has helped with the fidgeting I get when taking it. I haven't really had many SE except a little nausea and restlessness. I can't sleep for the next 2 days. Usually crash on the 3rd day. I try to walk 3-5 miles a day which definitely helps with the fatigue.
I've been going to physical therapy weekly which helps with range of motion for my right arm where they took out the lymph nodes and surgery. Definitely recommend going!!! Now have a touch of lymphedma swelling so I'm getting a compression sleeve. It's always something.
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Hi Sparty!
Welcome to BCO! We hope you find these boards to be a source of support and inspiration when you need it most as you continue your treatment. Thanlks for jumping in and sharing your story! You might want to check out our Cold Caps forum, you might find some info there that could be helpful in managing some of the issues you're experiencing with them.
The Mods
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Amanda, Definitely report the shortness of breath to MO. I was very out of shape and developed tarchicardia, higher then normal heart rate, during Taxol. No one directly said it was a side effect but that is what I had. I guess it could have been from the other meds or a combination of Taxol and meds. Anyway, it went away eventually after chemo was done. Good luck, MJS
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MissBee- I am sorry to hear about your staph infection and dizziness...I hope the trip to Urgent Care helpful. You and I are on the same schedule and experiencing similar things. I ended 2 weeks ago and that last one was hard for me also. These past 10 days some of the most difficult post Taxol with nausea. ..bowel issues...muscle/bone pain and the fatigue quite prominent compared to the 12 weeks of Taxol tteatment. I guess this will take time and patience to get to "new normal". Hope you got some medical relief
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Labscientist: Thank you for your support. I swam again another day, and would have liked to have gone today before my 7th Taxol/Herceptin, but didn't--had a slight earache last night and decided not to risk a swim today in case swimmer's ear was brewing. Good suggestion on the Aloe Vera juice-I'm going to get some.
Citrinefiff: Sorry it has been tough for you; it has been for me too. Agree: ask about not taking the steroids. They caused me so much trouble with heartburn and GERD and major facial flushing on the first round, that we discontinued them after that and went with Benadryl only. I have it infused, and actually need to take it more and more each round. At first, only the day or two after chemo. Now, it i up to every day, or my Taxol rash that began on my knuckles and hand tops and started up my forearm spreads. When I missed a day this week, the rash appear on my upper arms, in a big patch about 4 inches by 4 inches, on each arm.
I simply try to keep my focus on the chemo drugs getting the job done--attacking and eradication any free floating cancer cells anywhere in my body. It's not easy to have life so "reduced". But I have found blessings along the way, with deeper and better relationships with family in particular, and a new way of appreciating even the simplest things in life, things I used to consider "chores", like the ability to do a light daily vacuuming in the kitchen and family room (I have a Siberian Husky...her sheddings make a new carpet daily in the summer here in California.) My husband has suddenly morphed into the man of my dreams (well...), in that he is actually cooking now (and doing all the shopping and all the clean up, as I can't be on my feet for long at all. And, not only is he cooking, but he is making food I like and searching out new recipes...and he even went to Whole Foods and bought several spices I have never bought, such as sumac, to make an unusual and amazing middle eastern tomato salad. So, there are lovely things occurring through the ravages of chemo. I hope you can find some similar things in your life right now. I just try to stay focused on them, and what I can do, and not what I can't.
AmandaPD14: Agree with May and Reflect, and hope you did mention the shortness of breath to your MO. It can be caused by many things but I would definitely send an email or call and let them know.
MissBee and DFWFLYGIRL: I am so happy you finished, and so sorry about both of your hard post-12 two weeks. But thank you for sharing that the cumulative effects make for almost 2 weeks of feeling not-so-hot post final chemo. This is helpful to life planning! MissBee, hope your infection has cleared. Keep us posted. Did it start from a noticeable scratch or cut, or do you have no idea? I know staph is everywhere on our bodies. And how is that gorgeous shaved head of yours? Is it growing yet? Did you use a Number 2 when you cut it?
Sparty 15: Welcome! I also have been going to physical therapy to prevent lymphodemy in my node-surgery arm. It has also been really helpful with post- mastectomy scar tissue.
Grateful today that my dear friend returned from 3 weeks of visiting family and was able to come to chemo with me today. It was a lovely time to catch up, and it helped to have her there as nurses kept coming by to show other nurses my hand/foot syndrome red feet....I guess even some of them didn't believe it was possible on Taxol until they saw it for themselves! Anything more than 200 steps a day, and the feet still turn bright red on soles, swell, and become very painful. I'm just trying to stay off of them to avoid the ulcer and blisters....but it is very hard, even just around the house....
Also grateful my daughter is home from college for a visit between quarters. So, so nice; I cherish our time together. Enjoy your weekends everyone!
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Last week I posted that I had high temps, but not high enough to need to go to ED.
This week, high temps again, but today spiked over the magic 38 degrees, and I was feeling rotten, so I got hubby to take me up to the hospital. They've done a barrage of tests and so far can't find any source of infection, so sticking me on antibiotics just to be on the safe side.
I'm thinking I'm probably going to be dealing with high temps every week till I finish treatment, even though at treatment on Monday everyone said high temperatures doesn't sound like a side effect. Argh!0 -
Hello Ladies, I will start the weekly Taxol next Wednesday. My OC said Taxol is lighter and I won't need Neulasta and steroid like with AC. I had chest problems with the Neulasta and also fear of heart damage with Adriamycin. So I'm feel relief that I won't need to be concerned with Taxol. From all your ladies posts seemed to point to neuropathy so I definitely ask my infusion nurse for ice bags for hands and feet. I lost my hair with AC four weeks so it's nice to hear that they will come back sometimes during Taxol. I never completely lost my eyebrows or eyelashes. The side effects that I dreaded with AC are chest related pressure, joint bone and nerves. Through it all I tried to walk either outside or on the treadmill. I heard there are some heal pains related with Taxol. Does it mean I can't walk as much? Thanks all ladies for sharing your useful information and experience.
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I forgot to add that I read taking Turmeric with curcunin can enhance the effects of Taxol. Had anyone thought about or taking any supplements with Taxol? My OC let me take only vitamin D and nothing else with AC due to high liver enzymes. (interaction with chemo) but I think with Taxol it should be different. I'm all about alternative treatments if possible when all this BC started. I changed my diet to include plant based no meat just tofu and fish for protein. I also use only sea salt, no refined sugar. I hope that helps with SE overall. So I like to add supplements as needed with chemo treatment. Thank you ladies for your valuable inputs.
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Hi Houston. My oncologist was OK with my taking vitamin D during taxol/herceptin but preferred that I take no other supplements. The list of foods to avoid that I was given before chemo included fish oils, tumeric, green tea and grapefruit.
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Houston: Agree with Pipandor: I was told by oncologist--there are signs posted over the entire large oncology division at my med center about this--not to take any antioxidants. This is because there is evidence that shows they reduce the effects of chemo, in that they protect the cells --all cells, including cancer cells, in your body. And that defeats the point: the chemo is supposed to get to those cancer cells and wreck havoc on them. So, I stopped taking fish oil, green tea, tumeric. I was told to take a certain level of Vit D, calcium (I'm osteopenic), B vitamins are okay, and a general multi vitamin is okay.
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I just completed my 11th Taxol treatment. I've gain over 20 pounds and was told that it had nothing to do with Taxol and that it may be caused by the steroid pre medication. I take a Furosemide tablet each day but with it doesn't seem to rid me of all the excess fluid. My nephrologist exam said I was ok. I was wondering what anyone is taking naturally to get rid of the excess water. With the weight gain, I'm thinking I may have to visit Omar the tent maker!!!
P.S. My onc is only concerned about neuropathy. When I said I had some numbness in the last 3 toes on my right foot. It was dismissed with a remark that I wasn't diabetic. Doctors just focus on certain factors and sometimes can't see the forest from the trees.
Highhopes .
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highhopes: here is an article that might help you from a doctor about steroids. https://www.hss.edu/conditions_steroid-side-effect...
you could always go my route yesterday and get terrible unrelenting stomach cramps and diarrhea, but that is NOT suggested as a solution. I am glad to say that it's better today, but wouldn't wish it on my worst enemy. I do think from reading other doctor discussion posts on this and other sites that adding more protein and excercise when you can does help. I got a couple good protein shakes with less than 200 calories (or boost or ensure) that don't have soy or gluten that I really like. Vega One and the other I got from Target, but can't think of brand now (waiting for shipment). You can find it on their website, it was cheaper than the VegaOne from Amazon. Sounds like you are almost done!!! Do you have another regimen or rads after the taxol? I go for #4 tomorrow!
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You don't have to have the steroids!! I haven't had them since my first weekly taxol. I've lost five pounds.
The bad news is, my dermatologist thinks my current rash is an allergic reaction to neupogen. I give myself four shots a week of it. She took two skin biopsies and we should have exults Wednesday or Thursday.
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LovemyVizsla bummer about the allergy to neupogen. Hope they can come up with a solution for it. I get bad heat rash on my neck at night, been using CVS ezcema lotion, and it helps a lot.
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I just had my second round of weekly Taxol last friday. I have noted that my lymph nodes in both breasts extending into the underarm are not enlarged. Has anyone developed lymph node swelling while on Taxol?
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Hi All,
I had my first of 12 weekly Taxol today, with herceptin drip lasting 90 minutes. I have the feeling I will be up all night (forget the name of the steriod)
I don't seem to be going to a very open minded ONC center but from I have read here I would like to have Herceptin over 90 minutes. Have found out my MO and the nurse are only in office two days a week so I don't know what I can reach them with questions, this a bit of a problem. I didn't even get a chemo class until just before the first infusion because the MO and nurse were away and then I couldn't reach the nurse the week before when she got back. This caused undue anxiety- I am the type that needs to know EVERTHING - I will NOT will popularity contests in the medical field !!!! . Thinking I might need a more available MO. The nurses at my center didn't know or share anything about SEs, like icing toes, etc I got all that info here on this board. One nurse told me flat out and in a rather annoyed way that if I wanted to put frozen iced peas, and ice cubes on my toes and fingers I was on my own. She said nurses there don't do extra stuff like that. Another nurse was fine about moving the bags, etc... My friend reported the unkind nurse as also refused to go ahead and get my Ativan that the mO had ordered. I had mild chest pain, I was sure due to anxiety (i get sometimes anyway) and she just stopped the infusion. She refused to get up and get the Ativan saying she had to watch me, but refused also to ask another nurse to go get it! My MOS nurses had just told me she ordered it, but then it wasn't there. I feel like I am talking to air. I just told her that I wanted another nurse working with me - I don't accept this kind of nastiness from folks now that I'm getting older and I need to advocate for myself with this BC. !!!!
I got another nurse. Sigh. I might need to change centers. This disease is stressfull enough.... Maybe it really is just my expectation but I have been truly saddened by the level of care, and very $$$ care. Maybe I'll just never get my expectations in check, thinking others have the most wonderful, available MOS and nurses. What ever happend ot a little TLC in a setting for "care" Yeah I know, stupid question. ELLIE
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I hear you, Ellie! The nurses at my clinic are amazing. They are all so lovely, all so gentle, all happy to let you talk or will chat to you. They ask about any side effects and discuss anything that's likely to come up.
But when I went into the hospital on the weekend the nurses who were on duty when I got in there were almost nasty, and not believing me! They were having trouble bleeding my port, and wouldn't believe me that I'd never had a problem before, then we're really rough. They wouldn't believe me that I have no mouth ulcers and even inspected my mouth to make sure. One was less than impressed when she asked my weight, but I couldn't remember when I'd last weighed myself (it could have been that morning but I couldn't remember!) so she made me stand on the scales and I was heavier than I told her.
I just wanted to be out of there!0
