Anyone on just Taxotere and Cytoxan?
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Hi Ladies: Been a while since I posted here. Finished my treatments on June 3rd. On the nail topic I have lines on the nails which I was told are because of the treatments. My toe nails on both big toes are barely hanging on now. As it looks I figure I will end up totally loosing possibly half of my total nails on the toes. My finger nails continue to move farther up the nail bed towards the nail wick and are white. I cut all of my nails so I wouldn't snag them on anything and pull them off.
Hair is growing back at a pretty good rate now. Still have patches of slower growing hair...but its real hair.
My memory continues to be poor. The swelling in my feet and legs are still a major problem. I am now able to hit the treadmill for longer periods.
No matter what chemo is done and recovery is slow for me but its recovery and one day at a time.
I hope everyone is doing good...your in my thoughts and prayers.
Hugs,
Nadine
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Hi Friends! So good to read the encouraging posts - happy to tell you that my head is finaly clear again. In more way than one! Hair started falling out two days ago. I know how Charlie Brown's Christmas tree feels. About fingernails - my onc said this can happen. They give me a bag of ice to put my fingertips on during chemo. Only about 16 or so days out, but so far so good. Also, try the nail polish called NAILTIQUES. It's expensive. It's clear polish that goes on about every three days - just keep putting more on top of the old coat. It does help strengthen the nails. I'll report back to all of you - so far, fingers and toes are hanging in there. Sending much love to all of you. Who's getting ready for another round? Keep us posted - we're in there with you! XO, Mary
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Hi Everyone,
I am ready for my Second treatment tomorrow. I have felt pretty normal the past 6 days other than for losing my hair I would say I felt normal again. I haven't had any nail issues so far but I have really strong nails so maybe this will help. No Neulasta shot for me yet. I don't think my doc gives it unless you have really low blood counts.
Hugs to all and hope you are all well.
Take Care,
Yasmin
Christi_in_Texasthanks for the tips on my stomach issues. I will try that if I have the same SEs after my second treatment tomorrow.
MAGOB - I too started to lose my hair on Day 12. By day 17 I had to shave it even though all my hair had not fallen. The hair was falling like crazy and it was leaving messes everywhere. What really pushed me to shave it was my sore head. The morning after I shaved it woke up with a ton of relief. I look a little funny right now because I have scattered fuzz and bald spots. I have been wearing a wig to work all week but thinking of wearing a scarf or hat to work on Friday because wearing a wig 8-9 hours is very uncomfortable for me right now.
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Hello Everyone _
I will be starting T/C X4 on September 9th. Im quite scared as Im sure you all were and are.I am 44 and had a 24 onco dx score so decided to do the chemo and give it my all. I am reading through all your posts and you all seem so close and I am hoping to squeeze in to all your support and confidence of getting through this. I lost a beautiful grandson in 2008 (car accident) and my daughter was seriously injured (she was pregnant w/ him - 6 mos) so I promised myself I would do nothing but fight this terrible disease and be able to hold my future grandchildren and continue to see my daughter get stronger. She is a walking miracle. Im so scared about the finger nails, neuropathy, long term SE's. Most of us are so young... what will this do to us? I guess it doesnt matter when it comes to fighting for our future.
You all have great tips and I cant tell you how much us "newbies" thank you for that.I get my port put in on Friday then start TX on wednesday next week. I wish you all a restful night and gentle ((hugs))
Gma - Toni
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Toni - don't worry. Some people do experience more side effects than other. Some of us were very fortunate to tolerate the chemo very well. Good luck!
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Toni - We're here for you. I will be going in for treatment 2 on the same day you get your first. You can do it. Get lots of things you can snack on, and have them in the house before you go. That way you can relax and nibble when you feel like it. Sorbet is something I'm going to buy this time around - a little less milk, and something nice and cold to treat myself to. Have you cruised the topics about getting ready for the first chemo? There are some good lists on this site.
Yasmin - thinking about you today. Hope round 2 is smooth sailing. Stay in touch. About your wig - have you heard of the gel headband that you can wear under your wig to make it feel a little better? My hair dresser told me about it yesterday. We have ordered two wigs online - hopefully there will be a taker in that box. Doing OK with scarves and baseball caps. Kind of sad thinking about the first time my family sees me without hair. I've got the patchy fuzz, too. It makes me look like a wet cat.
Greytmom - Nice to see your post. Hope all is well in your world. What can you tell us about life after T/C? Are you having a good fall?
Happy to tell you all that I've been in the pool working out this week and feeling pretty darned well. Still have to take a nap sometimes. We must remember that the body is an amazing thing that renews and restores itself. This WILL pass, sisters! XO, Mary
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Hello All,
Yasmin, I hope that you breezed through your second round today.
I had my second round yesterday. It was quite eventful. Just a few minutes into the taxotere infusion, I got a little bit of belly cramping & then all of the sudden, my head started feeling a lot of pressure and dizzy and my vision had white flashing fireworks all over. I was breathing very heavily, practically gasping. My blood pressure and heart rate skyrocketed and my oxygen level dropped. Within less than a minute, I was surrounded by three oncologists and several nurses. I was given benadryl, more steroids and they put me on oxygen. Most of it went away within a few minutes and all within an hour. It was a very scary experience. I guess I must have looked pretty bad, because the nurses kept coming by over the next few hours telling me how much better I looked. My husband said my face was bright red.
My oncologist said no more taxotere, but I convinced her to let me retry after the nurse told me it usually works if they slow it way down and that I still had the benadryl and extra steroids in just in case. I was scared, but I just couldn't leave there not trying it again. I want to do anything/everything I can to end this cancer. And it worked - no problems the second time in. Hooray!
So...Mary, PLEASE, make sure they give the taxotere to you slowly even though you did fine the first time!
As a side note, I think I am developing a bit of thrush on my tongue back towards my throat. It's white and feels/looks like something growing there. Is there any way to stop this before it gets any further - or do I need yet another prescription?
TONI - Welcome. I'm so sorry to hear about your grandson. I'm glad your daughter is better. It's so tough when these things all fall so closely. Please check into L-Glutamine for preventing/easing neuropathy. It has worked for me so far. Also, you may want to keep your mouth very cold (ice!) during infusion and the rest of the day. I did the first infusion and developed no mouth problems. I slacked off this infusion because I was wiped out after the allergic reaction and believe I have developed thrush already. I suggest you read the chemo shopping list on this site if you haven't already. It gave me great information that I put to use. I agree that we're all so young. I'm 39 and breast cancer was the last thing on my mind pre-diagnosis! I was always a very healthy, active person and it's been hard feeling so vulnerable! I only had 4 lymph nodes removed, but am having lymphedema issues already from the forearm down. In all though, I'm extremely grateful every day to be here for/with my kids and family.
Everyone, feel well and get a good night's sleep. Always so glad to have all of you.
Shay
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I start TC on Sept 10th, sounds like a few of us starting around then. The info shared by all has been so so helpful more than any doctor or internet site. thank you! this may be an odd question but sounds like most of you are confident in the decision to do TC, anyone who has finished that had any regrets about doing it? took awhile for me to come to the decision to go through with it and this board helped with coming to the decision,
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Shay -
I'm relieved to hear your story - I also had a reaction to the taxotere that scared the nursing staff. I got shooting pains in my left arm in addition to the other symptoms you describe. There's nothing like telling nurses that you're having pains in your left arm to cause a frenzy of activity. Slowing down the taxotere did the trick for me as well. No more pains or palpitations. I guess my reaction was not as abnormal as all that.
I'm one treatment down, with my next one the week of 9/14. My first treatment was 8/24. I felt fine the day of the treatment and the next day, but by day 3 I was feeling awful. As many have said, it's like having the flu magnified several times.
What I hated the most was the foggy feeling in my brain. It felt like I was slogging through mud every time I tried to think. Fortunately, that only lasted about a week. I was back at work a week after treatment (albeit working from home), and I feel well enough that I'll be going into the office next week.
The only side effect that has lingered into the second week is the loss of my ability to taste. Anyone else experiencing this? Is there anything that helps? It's hard to motivate myself to eat or drink when nothing has taste. Cranberry juice and tea are tolerable, but water now has this slimy sensation that really bugs me.
Be well everyone!
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Good Morning All,
My second treatment yesterday went well. I was a tiny bit tired yesterday afternoon but I think it had to do with not sleeping well the night before. By evening I started experiencing some stomach cramps and diarrhea. This was expected as I had the same SE's the last treatment. Hopefully it won't be so bad this time. I am at work this morning. I decided not to wear my wig today. I am wearing a nice and comfy pretty scarf. Wearing the wig to work all week has been a bit uncomfortable at time. I have the comfy grip and a soft cap under the wig and I still can't wait to get home and take that thing off.
MAGOB - Thanks for the tip on the Comfy grip gel band. I do have it and have been wearing it and still can't get complete comfort. I think it is just something I will need to give time to get use to. I don't generally wear things on my head so maybe it's just an adjustment I need to make.
Shay - You poor thing. What an ordeal! I am so glad to hear you are OK. I am glad the medical staff acted quickly. I sure hope you are feeling better today.
Lumineax - The most frustrating part for me my first treatment was losing my ability to taste. It was so disappointing to not taste anything and I simply lost my appetite. I started to regain my taste buds about Day 14. I hope you get some taste back soon.
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Hi Gals - Well Im leaving for my port in about 30 mins.
Graymom - Thanks for the hello and scared crapless but we all do take things different. Sounds like you did ok.
Yasmin- Hope you tummy is feeling better. 2 more to go !
Shay- Thanks for the great tips and it sounds like you are a super mama ! No more scares ok?
lumineaux- theres nothin like no taste buds ! I need to loss weight so I could use that ?? LOL
MAGOB - be thinking of you on our same days!
edited to add:
dogsaver- sorry I cant help yet but welcome- good luck!
Dx 6/9/2009, IDC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-0 -
It's been a while since I have checked in so have lots of catching up to do. Hello to all the new members, and hoping you can get through this with minimal SEs. I know a few of us have been very blessed, myself among them. A lot of my success was due to the posts and info from those going thru this ahead of us so keep reading.
Shay, scary episode, especially on 2nd tx. Glad you are ok.
I apologize for forgetting who asked about nail issues. One hint I read was to keep them trimmed close so that if they were to begin to lift, they won't get pulled uff accidentally. A lot of people get gray or black lines on their nails and or ridges. Aside from trimming close, I was religious in using hard as nails since m nails already had peeling issues. The nails slow down in growth so the nails that did peel down more are very short, but they are all there 3 weeks post 4th tx.
My neuropathy was fleeting and just annoying..again I was Blessed.
I did have the no taste issue beginning a few days after treatment and lasting several days. It was SO frustrating! Funny that toast and bacon had no flavor but a grilled cheese did? I could mange an egg, and tried to eat more flavorful foods. Chicken soup was okay, could taste that and it worked not only for filling me but in getting fluids intake up. Oh and the slimy water taste. Try ginger ale as it has a kick, even if you only add a bit to fruity gatorade or cranberry juice.
Rest when you are tired, don't fight it. It WILL come back to bite you.
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dogsaver: no. If you look back to the Feb/March 2009 part of this thread you'll find my story telling of going into renal failure and almost dying. I was not able to finish TC. I'm over 1/2 year out from my last dose and still with significant SE's that are interfering with my ability to do what I used to do. I've seen some women do this stuff for some relatively low oncotype scores and think sometimes people see so many here doing chemo they forget that that 1% this, 5% that, SE can really add up. However, my oncotype score was high and I was PR-. Even knowing how bad things still are, how long it has taken to recover this much, and how sick I got, I'd do it again. I sit here now facing the rest of my life worrying about recurrence, and my only regret is that I wasn't able to finish the TC. (DH on the other hand regrets every day that I did it at all--he doesn't understand why I think it was worth it)
Sorry to be a downer, don't want to scare anyone, but it sounded like you wanted an honest answer. As you can see, if I had been in that group of a lot of women here who did much better with it, I'd really not regret doing it.
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Magob - So far I'm steadily getting back to normal. My energy level is fine, but I'm tired because I am a teacher and just went back to work 3 weeks ago. I'm not any more tired than the usual beginning of the year though. My last treatment was 5 days before I went back to work. My hair is growing back, so far no problems with nails or any new side effects. I mostly had fatigue on days 2 & 3 after treatment, funny taste for about 4 or 5 days, then could eat whatever I wanted. The anti nausea meds caused some mild constipation, but I handled that by taking a stool softener the day after treatment and that helped. I'm holding off on having my nails done again for about another month, just to make sure their aren't problems. I'm cleared for my implant exchange in 3 weeks. I never had low blood counts, and I think that's why I'm bouncing back so fast. I also continued to work out during treatment as much as I felt like it, so I think that helped maintain my strength and stamina.
Please know, as you can see from reading other posts, I was very fortunate. Even my onco and his nurse said they couldn't believe how remarkably well I did through treatment. I wish everyone the luck I had! I'm happy to answer any questions about after treatment if you have them.
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Way to go, Ladies - we're knocking these treatments out. Shay - so glad you are up, alert, and writing after your wild tx #2. Hope you are feeling just as fine as frog hair soon. Take care of yourself, 'kay? Yasmin, sounds like you are getting the hang of things. Glad you went to work without your wig. Not all that bad, is it? I've gotten used to my looks - this is just the way it is for a while. Two of my dear pals came over for dinner and a movie last night. - They brought dinner. I came to the door without anything on my head, and they convinced me to forget the scarf for the evening. They even told me I looked cute! So that's that. This is doable. Beach - good tips, girlfriend. Duly noted. Going shopping tomorrow. I would also add that a little lemon squeeze in the water can help the taste/texture issue. Toni - you're going to do just fine. If we can do it, you can too. Has anyone told you to start drinking lots of water the day or two before treatment? I think it helps. And for heavens sake, don't let up after treatment. Load up on the fluids. Dogsaver, I know the decision was tough and this whole thing IS tough. But hang in there. Try to wait until the wave of anxiety passes - for me, prayers help to chase the willys away. When you have a quiet moment, then ask yourself about this decision. You will know what to do. Hang on tight and have faith. Greytmom - as usual, your post is so uplifting. Thanks.
Alright sisters. Let's get started on our walk over to the sunny side of the street. Praying that each and every one of you will have pep in your step along the way. XO, Mary
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thanks to all for the wonderful information and encouragement and honesty. It is very appreciated!
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Hello to all! I finished chemo about 4 weeks ago but my feet continue to swell just like they did during the 3rd and 4th chemo. I have been back to work full time for 2 weeks and I spend most of the day on my feet ( I am a teacher). Anyone else experienced something like this? I hope everyone is having a great weekend!
Diana 0 -
I just found this web site and wanted to say how much info I have already gained, and how much better I feel just by reading it! I didn't know what normal was supposed to be, and have been trying to read everything I can to figure it out! I had my first round of 4 TC treatments on Sept 1st. I had the neulasta shot on the Sept 2nd. I had horrible bone aches for 2 days. They said it could happen, but I didn't think it would be so bad. It put me down for a couple days! I'm tired and weepy and don't know if I have a sinus cold or if it's just the treatment. I can say I started feeling better Saturday and have felt better everyday since. My big question is about the hair loss. It seems like maybe 14 - 20 days into it is when it happens? I'm nervous and scared, but getting used to the idea I guess. I wanted to say Thanks to everyone who has posted, it is nice to hear from people who have been where I am.
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Jenw - I started shedding on day 18 and had hubby shave my head...I just couldn't stand the hair everywhere...I have been going commando ever since because I cannot stand anything on my head (wigs, scarves or hats)...
I have been taking Claritin (or generic form) the day before, of and after Neulasta and haven't had any bone pain...I read about it on half a dozen threads and it seems to work...
I have TX #3 on Wednesday so will be 3/4 of the way done...I am so glad you found this site, it has kept me sane on this 'journey'...
Best wishes and hugs!!
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Hi JenW - Hope you adjust to the hair thing. Once you have some time to get used to it, it's not so bad. My hair started coming out slowly around day 14, but in chunks on day 15 and 16. Went ahead and shaved it on day 16. Do you have some caps or a scarf or a wig ready? You'll still be your same pretty self - just you wait and see. And clean up is a snap!
O2Bhealthy - We will be in treaatment on the same day. Toni will be there for her first, I'll be there for my second, and you for number 3. Let's go, girls - power in numbers. We can do it.
Been debating whether to tell you all about this - it's been hard to deal with, and maybe sharing will help. At my request, my sister met with a doctor to do a risk assesment. I went along, and she did get some good advice. The goal is to determine what percent chance she has of getting breast cancer compared to the general population. Well, the conversation turned to me and of course we talked about my cancer. I tested negataive for BRCA mutations. The doctor asked me if I was releived because of those test results. Yes - I AM relieved. His response was that I should not be. My family tree indicates there may be some kind of mutation happening. Bottom line: he wants to continue testing for other mutations. I have gone through surgery two times, plus a port. Have agonized over the decision on whether to do chemo or not. I decided to do it. Now I am faced with this - I could not hold back the tears. I was asked if I would get a double mastectomy if the results were positive. I thought I was beyond this - had a plan and victory in sight. Hard to describe - this really knocked me down. Suddenly they are trying to make ethe cancer bigger than me. IT IS NOT. They sent me straight to genetic counseling - AGAIN. I have not decided whether to do any more testing. Would my treatment be any different? I'm already doing as much as I can. The only thing left would be bilateral MX. Don't know if I would do it. Doggone it, this has all but taken the fight out of me. I'll get it back. Wish me well girls - need your prayers and encouragement.
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Magob- Oh Girl, I am thinking of you. Look ahead. If you wouldnt do the B/L MX then dont do the testing . You may change your mind. One thing at a time though. We thought we were done and then wham - chemo. Big enough. I will pray lots and lots of answers to come to you.
I loved how you mentioned the three of us girls doing our tx together on wednesday. AAhhh... I took my port out and decided not to go..........OK so I like to dream.
BTW... Hi Michelle ! Glad you found us jenw !
((HUGS))
Toni
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Magob & Toni - I'll be thinking of you both on Wednesday!!!
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Michelle and Magob - yes, be thinking of you tomorrow. I thought maybe if I didnt show up they may not notice ? I could pretend I had the tx and still get the benefits? Yes? ...... OK, I know. Just a little shaky today.
I am thinking of you all today and everyday since we met. I can not stress enough the tips and caring atmosphere you ladies give. I did get ahold of Laurie at francelux.com. Beautiful "its a wrap" coming. They are $72 or more dollars. 100% silk. I am so excited. Still need to look at a few more sites.
Wanted to let you know I suffer from chronic pn and have 2 herniated discs in my neck. Sometimes it is very difficult to post (arm and neck pn) but I do my best. It really comes and goes. I will do great for a week and then cant post for another. I am in your corner everyday and listen so well.
Anyone need to PM me or anything - I am here.
Wishing everyone a good day
Toni
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I went to the doctor today just for a follow up. They checked my blood count and all is good, yippee! Good thing considering the pain the darn Neulasta caused! I think I almost had him convinced to skip the Neulasta next time, but no go at the last minute! I will be better prepared next time tho- thanks O2Bhealthy for the Claritin tip, I saw that on several posts as well and will give it a try. I also have some left over pain killers from surgery, so that should help too.
MAGOB - thanks for the encouragement, I kinda feel silly worrying so much about dumb hair when there are far worse consequences! I'm not usually so vain! I did go get a wig that looks a lot like my current "do", mainly because I have a 9 year old who is not handling the whole thing too well. I plan to do the "hair" in public then hats and scarves at home. I'm sure we will all get used to it after it happens, it's just the darn unknown that kills me! I'm planning a big' Make Mommy Bald Party' with my Hubby and kids! Should be great fun!
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I love you from afar, ladies. Rest easy tonight - all is well. You are in my thoughts and prayers. XO, Mary
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Hi Everyone,
I am new to this thread, but I am starting T/C tomorrow. Hi Toni! I have a question for you ladies that have been through a few of these treatments. My family is having a hard time supporting me right now. They were great through surgery, but now it is clear that they are through. My husband is kind of giving me the side effects are for wimps thing, and I am not sure how to handle it. Any way that is just a bit of back story, here is my question:
My oldest daughter has just started college, she is in the marching band, and Saturday is the first home football game. They are having a big friends and family party before, during and after the game. Her school is about 50 miles away from our home. Two days after my first treatment will I be okay to go? My husband thinks I will be fine, and of course I want to go. I feel like I should push myself, but I am also worried. I need some of you wonderful folks to respond and help me know what to do.
I know my husband and kids are probably as stressed out as I am, but I am just not sure how to support them while getting my needs met too.
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Hi DenverDiva,
I can relate to your situation. I have 13 friends that I have known since elementary school and we get together EVERY summer. Everyone wanted to see me and wanted me to be there. I tols everyone that it all depends on how I feel. My oncologist ordered me to go for the week end and have fun. My husband had Kidney Cancer and had it removed as I was going through radiation.
It was important for my friends to see that I was OK. We had lost a friend to luekemia a few years ago. I made sure that I had pain pills (vicadine) for the 4 hour ride, my daughter helped me drive and was ok. Usually on the 3 - 7th day I feel achy and more tired. After returning home from my girls week end, my husband & I had to drive to Baltimore ( 12 hour drive) because his mother had back surgery and we stayed with her for a week.
Everyone has different reactions to these meds and has different tollerances to them as well. The first one is very scarry and you will know after this first dose how the rest will be on the most part. If you decide to go, I would ask the Dr. for some pain pills and adjust the day to how you are feeling. Maybe just go to part of the events?
Hope this helps.
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Hi everyone -- Haven't posted for awhile, was in summer mode.
Dogsaver -- I do not regret doing T/C. I did 6 rounds. I was in same boat as GreytMom -- very fortunate on the se's. I had them but not to the extent many do. It seemed so insurmountable at the outset but then I've reached the end of the summer and I'm done. If I can do it, you can too.
MAGOB -- Im sorry the onc. alarmed you and you are facing more decisions. That is a very hard part of this process. It's interesting to me because we have no history in our family and my onc. hasn't recommended genetic testing, per se. I know you are reeling but give yourself some time to think about it. I'm going to send you a private message.
Denver Diva -- My worst day was Mon. after a Fri. treatment. I think you should go and you can participate but not stay out all night. You can sleep in the car to and fro. My dr.'s ofc. offered my husband counseling w/ a social worker on staff so he could raise issues w/ her. Maybe your husband would benefit from talking to someone on staff about your se's, if he doesn't believe you, maybe he'd believe them. I have heard husbands are in denial sometimes.
As for all the newbies here, ladies, you can do it. Stay strong and take care of yourselves and you will get through it. I read some funny books and that helped. I must admit being bald has been humbling. But I hope to have some hair perhaps by Christmas!
Hang in there all.
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Dear DenverDiva, I started TC on Aug. 12 and have 2 more to go. Everyone is different, but I get my chemo on Wednesdays. Thursday I am great, Friday and Saturday, I am not. I think it has more to do with the neulasta shot that I get the day after chemo than the chemo itself. I take the claritin, but still get a pretty severe headache/neckache & I am absolutely exhausted/useless to anyone on day 3 especially. This is a very tough choice for you. I understand as I have 5 kids myself and we want to be there for them in everything.
If you are getting the neulasta, it should help for your wbc count, but keep in mind that some of the Universities have a lot of swine flu going around. I would definitely check with your oncologist and get his/her opinion about being around large crowds.
I hope that your family can regain an understanding of how difficult and hard all of this is on our bodies. I just decided to take some time off of work as an elementary school teacher because I am fearful of getting sick and want to get through all of this and put it behind me as quickly as possible. This was difficult for me as I have never been one to take any time off from work, but if ever there was a time that we need to take care of ourselves - this is it!
I wish you the best in your treatment tomorrow. Drink lots of water today and get a good nights rest if you can.
Shay
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Denver Diva -- Shay T is right about crowds. I totally avoided them; a nurse said, now's the time not to go to the theatre, etc. But -- you could participate just in the party at her house; it's a hard call, but if you really want to go, I would go and limit your participation. I don't know why this is in bold, sorry!
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