Anyone on just Taxotere and Cytoxan?
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BIATCH AND MOAN ALERT!!!
Ladies I really need your words of wisdom and encouragement. I am day 8 from TX #1 and I don't know if I can do this anymore. I am usually such a strong person and now I feel like an empty shell. Everyone tells me you look good or you are really holding up and I just want to scream and say you are not in my body. I expected to have some SE's but I swear I have gotten every single one. Every time I call Onc he just adds a new script ARRRGH I am now a walking pharmacy and before this I had to be desperate to take an advil.
HEARTBURN- Pain is so bad I think heart attack. Almost wish so I wouldn't have to do this anymore. Onc prescribes Zantac.
THRUSH- Tongue is so white and sore I can't taste anything. Onc prescribes mouthwash.
DIAPER RASH- Have a lovely fire engine red bum that itches so bad I could scream. Have had diarrheah(sp) and you can imagine how lovely that feels. Onc prescribes Diflucan.
FATIGUE- Think bus ran over me then backed up and ran over me again just for good measure.
THUMBNAIL PAIN- Woke up this morning feels like someone smashed my thumb with a hammer. Maybe Onc will prescribe amputation.
Almost afraid to see what will come next. I have 3 more to go and honestly don't know if I can do it. I love my family (DH,DD,DM) and want to be here for them but at what price. Have heard SE's are cumalitive so what will #'s 2,3,4 be like. Part of me just wants to put all this in Gods hands and roll the dice as to whether or not it will come back. I was DX 2/11/09 had left MX no recon(wanted BX but surgeon said being to rash. Now has agreed to do it in Aug. after chemo) node neg. no vascular invasion, tumor had smooth well defined borders.How has all this happened in less than 2 months??? I just want my life back!!!
I hope I have not offended or scared anyone. That is not my attention. I just need support and you wonderful women are the only ones that understand.
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jax65, I don't know what to tell you. I was in your shoes, and a couple of other's here including webbie were like me and had every SE in the book. The other's didn't have any escalation of symptoms and got through it. Mine escalated until I had a near death experience and we stopped. I'm over 2 months out from the last tx and still have residual problems that my onc says will take months to resolve, (and may never completely resolve) and I'm just now starting to feel a little better. If I had it to do over again I would have pushed harder for a change in regimens or a decrease in dosage. They don't like to do that--with good reason--but it would have been better then almost dying and needing to quit. I would keep working with your onc to get help with the symptoms, keep getting support here, but if it gets worse, and your gut is telling you that something is wrong and you keep thinking like you are in this posting, you may need to push for some changes and not keep putting up with it.
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Thanks ReneeS. Considering making boobie cookies with a cut out (lumpectomy!) Only kidding.
Webwriter - So glad you made it through and can celebrate! So happy for you!
Jax65 - Sorry you had to be one of the ones who had such a bad reaction. This just stinks.
Ladies, you are all such an inspiration. With your advice, loving support and maniac rants!!!
I'm just so happy to have found you. With the good or bad, we're all in this together.Sukiann
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jax65 - I am sorry you are having such a hard time. I finished tx 4 recently. I just want to offer this.... for me... the first one was in some ways the worst because the anxiety of having these SE's for the first time is very high. You don't know what to expect, you freak out a little because these chemicals are doing weird stuff to you that you have never felt before. I get that. Once you experience them and know what might be coming on subsequent rounds, the anxiety is less and you may find that you do handle it better just because of that. AND, for me, and a lot of us... no chemo round is the same... each one offers different SE's... so it is possible and maybe likely that some of those you listed may not resurface on subsequent rounds. For me, I had wicked heartburn on rounds 1 and 3 only, mouth sores only on round 1 only, etc. Try to take one day at a time, manage the SE's one day at a time and don't automatically think that rounds 2, 3, 4 will be worse... because the next one may be better.... hang in there ... there is a lot of support here... we all have felt overwhelmed, many of us have temporarily lost hope and regained it, we all know what you are feeling..... you can do this...0
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Jax65 - Hang in there and don't give up. I'm new at this also with only 1 treatment so far but I'd definately ask the doc to see what can be done. Could it be spread out over 6 sessions to lower the dosage? I haven't written alot but this website has been a blessing! It helps us newbies understand what's happening to us cause I swear during the 1st treatment it seemed like I could feel it running thru my body. Like it was screaming at me and telling me this isn't right! My SE haven't been as bad as yours so far but I know it's coming. So just hang in there and use this group to help you thru it.
Webwriter - Last treatment, way to go! Celebrate, celebrate! Your idea of cupcakes is great, just may have to do that also. I'm sure the staff will be like family before I'm through with this.
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jax65 ~ I am 6 months post TC, and wanted to offer you and the others here some practical suggestions and encouragement. First, even though your bc had the excellent prognosticators you indicated, the fact that it was 3 cm & Grade 3 is probably sufficient reason for you to need chemo. (I'm also going to PM you a question about your dx & TC.)
As far as your specific SEs, for the heartburn, can you pin it to a certain food? For me, raw onions, even the tiniest amount, set it off. And I'd never had heartburn pre-chemo, so it can be something that's never bothered you before. I didn't have thrush, but I'd made a point of getting a last-minute teeth cleaning just before I started chemo, which may have helped (for anyone who hasn't started yet). I also used Biotene MW and continued to take my nutritional supplements (with onc's ok). On the diaper rash -- a couple of tips I'd picked up on the main chemo board here are to use a squirt bottle of plain water and/or wipes to be sure not to leave any chemo residue from your urine on your skin. I know there can be a fungal component to a severe rash, but being sure you wash the chemo residue off your skin is important. The nail pain and damage has been covered throughout this thread, but don't forget to ice during the T infusion.
As far as fatigue and the cumulative effects of TC, I found #2 easier than #1. The extreme fatigue hit me with #3, and I picked up a cold (don't do that!!!) with #4, which lingered for weeks. The most important thing you can do is pace yourself and preserve your energy. I know as women and mothers we're used to doing it all, and you really have to step back and say, this is totally about me and my health now. Getting well is my #1 priority -- not laundry or cleaning the house or whatever else you would normally do instead of focusing on letting your body heal. And you have to be sure your family is onboard with this new, temporary priority, even if it means having to ask for more support from them.
Lastly, just know that there is life and normalcy after chemo (and rads, if you will need those, too). Like kmmd, I had some residual SEs for 2 or 3 months, and at times I wondered if I would never get beyond the fatigue and muscle & joint pain. But, I can honestly say that it's all behind me now. The weeks and months go by very quickly, and you will soon be looking back at everything you've been through and what you will remember most is the strength you dug deep and found to do exactly what you're doing now.
Hang in there, ladies! Although it doesn't seem like it now, I promise you chemo will all be behind you very soon, and life will feel much more normal again ~ Deanna
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Hi Ladies...
Jax...I am sorry that you are having some difficulties. You are at day 8 and you will start getting better as the days go on...What is your regimen? Every three weeks? If so you will find that you will start to heal and get better. The first one is a test to see how your body can handle chemo...and like most we forget that we have to be careful in what we eat and do.
Heartburn...Think about eating soft foods and mild types of foods. We may forget that our bodies cannot handle anything pungent or spicy. I take Zantac 150's and they help.
Thrush...we all have that..and it does a nasty thing to our taste buds...it does get milder as the days go by..Think of it as if you had a cold and can't taste anything...eat and drink things that you like and smell and can taste. Like lemonade, tea or hot chocolate...
Diaper Rash...use baby wipes or something similar to wipe yourself. Your skin will get softer and feel different with treatment. Try baby powder to keep the area dry.
Diarrhea...This happened to me during the first session and now I get constipated and need to eat prunes after chemo...so be thankful for one or the other...LOL
Fatigue...it is normal and we all suffer from this. We can't seem to get our energy to do anything...and that's okay. I must say it does get worse as your treatment progresses. We are dealing with healing....
Thumbnail pain...some experience this and some don't - not sure why but thinking every body is different. Personally I have acrylic nails and I think it protects them to some degree. My thumbnail moons are darker than normal.
You are through the first treatment and just think...you only have 3 more to go. I have done 5 of 6 and knowing it is almost over is what helps me heal. I know this has happened to you so very fast and your world is not the same and it may never be...but you are not alone.
You are a strong person...you are because you expressed your feelings...YOU CAN DO THIS....and we will be here for you every step of the way....
Please let us know how you are doing...
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Cruise4Life - hi! Did you keep your nails on? I had acrylics, wore them very very short and with polish, but thought they had to go, so I've been growing them out and trying to keep nails short and as flat as possible to minimize the space between new nail growth and the acrylic still on. My cuticles are a mess (the main reason I wore them, to keep them in check). Are you still going for fills? Any problems with them filing your cuticles and stuff?
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chelev...I have PINK and WHITES and have had them for many years. I go in for fills every three weeks and make the appointment a couple of days before chemo. There are no issues and the girl who does them is very gentle and knows to be extra careful with them. I really think they have helped protect my nails..
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That's good to know - I really didn't want to get rid of them, and now I can go for fills and have them looking as great as they usually do!! Thanks.
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jax65: you are in the right place to ask questions and get support. we are all here for each other... here is my 2 cents after 5 round of TC (every three weeks).
Every round has been different....different SEs and different degrees of severity. The one thing you need to keep in mind is after the initial FLS (fell like sh*t) days --- the SEs do lessen over time and each day is a little better.
Make sure you log your SEs every day and tell your onc -- there is a lot that can be done to lessen them. My onc and I joke that by the time I am done, we will have it down pat.
Heartburn: I use prilosec OTC. On rounds 4 and 5 , I had a "sour stomach" / mild nausea - we added compazine -- works like a dream.
itching ---- I have a prescription for triamcinalone cream - it is a steriod cream.
nailbed pain -- had some awareness of tenderness on round 1,2 and 3 --- round 4 I needed tylenol to ease the pain --- so I could open car doors and zip my jackets, etc --- Round 5 - no pain at all.
Neourpathies --- which kind of go along with nailbed pain -- I take l glutamine 500 mg and B vitamins. last round I wrapped my hands in ice packs during the taxotere infusion and I have little to no prob with neuropathy ( numbness and tingling) in my fingertips. I keep my nails short and coat them with OPI Nail Envy -- some here use Hard As Nails.
Fatigue -- accept right now that you have to slow down and let some things go... try to get fresh air and exercise -- even if it is a walk around the block. Take care of yourself and ask for help. Try to eat lean protein help your blood cells regenerate -- i started drinking high protein Boost. Others concoct smoothies with protein powder.
I also find that Ativan 0,5 mg every 6 hours on Days 1-4 , then at bedtime after Day 4 really helps me cope with the stress of this. It also helps with GI upset. I am not one to take alot of pills - except nutritional suppliments, but during this time you really need to take whatever helps you get through it.
You have a wonderful sense of humor --- keep that --- it will help get you through. Someone at work was really frustrated about something today and said, "I'm going to pull my hair out pretty soon." I said, " Been there, done that, not all that it's cracked up to be.' We all had a good laugh about it ---- you have to laugh when you can .... and it sound like you can...
i've had other SEs, but I don't want you to be overwhemed by them -- just know that every one has a remedy that can help --- and they get better between rounds. re cumulative ( a pet peeve word) -- My round 5 has been my best.....round 3 was also good.
We are here for you -- - you will get through this.
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Happy Easter Ladies....and this bunny sends everyone a GET BETTER hug....cause you are all GOOD EGGS....
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Thank you!!! We really are!!!!
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We're good EGG HEADS!! Happy Easter chemo bunnies.
Jax - you're in the right place and all these SE's are new to you. Some will stay, some will go, new ones will show up. Just keep track of everything and I agree with using the baby wipes everytime you go - it helps immensely. Ativan was my friend throughout all the treatments and I no longer even think about taking it so I know it helped me tremendously with the anxiety and insomnia. Just keep checking in here - you will get tips and support all the time. Drink lots of fluids and get some fresh air each day but also realizes you need mucho rest. I still sleep 10-12 hours a night and I've been done for weeks. Take care.
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The Easter Bunny...has been spotted...hopping throughout the area...be on the lookout for a fuzzy PINK Bunny that is sprinkling...GOOD CELLS to heal all of the GOOD EGGS that read this..... 0
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Hi Ladies,
I finally was released this afternoon, blood count still low, probally related to chemo is what was explained, I am still very sore and tired but this too shall pass.
I went right to the hospital to see Malcolm upon my release and he looks so much better, face is even feeling out already, he should transfer to a regular room tomorrow. The new liver is working like a charm, he was so excited to show me how he could use his arms and legs again, of course I was ecstatic because a few days ago he was too weak to even turn his head or form words. They were concerned if he would have any deficient since he was so ill going into surgery but mentally and physically he is progressing better than expected in a short time.
Thank you all for your support and prayers, a community combined is what made this miracle happen.
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Misty - it is so GREAT to hear that Malcolm is doing well ... that is terrific news.. I can imagine the relief that that brings to you... you both will heal together and have long happy lives to look forward to ... that is just the best news I've heard for a long time.... !!!! woohoo!!! 0
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Good morning, ladies. Spent yesterday afternoon in the ER, as I was having problems getting a deep breath, coughing because of it, and rapid breaths - started on Saturday, but I thought I'd wait a day to see if they went away, and they didn't. Onc on call advised me to go in and have some tests to make sure there were no blood clots or heart issues, and thankfully there were not! This started since I'd had my Neulasta shot on Thursday. Anyone else have any weird SEs from this shot? I'm to follow up with my regular onc this week to try and rule things out. I was breathing fine while on oxygyen, but's its still a little hard to get a deep breath (although some very spicy chinese food last night once we were able to leave seemed to open me right up!).
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I posted wiht my January group, but wanted to ask here too:
Anyone have any advice for neuropathy? I'm out from the chemo so the ice during infusion thing won't work. Starting to get real bothersome (from what I've read the side effects peak 3-5 mos. post chemo so I guess I'm on that upswing). I've picked up on the gluatmine, vit B complex, massage and supportive shoes thing. Anyone else have any gems of advice for what worked for them?
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Hi Kmmd,
I'm now 3 weeks past my final T/C tx. I was hoping that some of these SEs would be going away by now.
I'm still suffering from neuropathy. Some days I can barely walk and my finger tips are very painful. I heard about Alpha Lipoic Acid and started taking it a week ago. Here is a website that tells about it. http://altmedicine.about.com/od/alphalipoicacid/a/alphalipoicacid.htm I really haven't noticed a change yet but the web site said something about 6 weeks to notice a change.
Thinking that I could be suffering from this for another 3-5 months or forever is very discouraging. I'm also suffering from edema in my feet, hands and ankles. That doesn't seem to be getting better either.
My eye lashes finished falling out over the weekend. Now they are watering more than ever. I think The lashes keep out the dust and stuff. My nose is constantly running as well. Food is still tasting bad. And my muscles are still weak. I'm just sooo tired of all of this. I could deal with it while I was getting chemo, but now that I'm 3 weeks out I want to at least start to feel better.
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Hi Ladies.....
Chelev..I replied to you on the other thread....hope your doc has more information for you tomorrow.
Misty...good news for you and Malcolm...continued good health for you both!
kmmd...luckily I have had little nueopathy...just tingling occasionally. What I don't like is the peeling of my feet and little tiny itchy bubbles which happens about 5 days post chemo. It won't be good if it comes out in full force 3 months post last chemo....
Firni...hang in there...from what I am hearing it takes a couple of months before you start to feel any better...
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Misty and Malcom - love and hugs to you both.. Take care and heal each other.
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Firni, I hear you about the neuropathy. 3 weeks--remember it well. The only thing I can say is that about week 6 I thought I might live through this, and now about week 8 I'm much more cheerful, I can taste and smell things. Actually, drove my husband crazy about week 7 when I kept sniffing the refrigerator and going "what smells", and he'd answer food, you just haven't been able to smell it for a long time. Anyone on this thread knows I've not been the "think positive" one of the group. Put, seriously, hang in there. I had that hospitalization and bad episode week 1, so hopefully my numbers are off and you'll feel better sooner then I said. But, I sloooowwwwwlllly improved for weeks 4-6, so slow I didnt' even think it was worth it, then all of a sudden the fog started clearing. The progress is still slow, but at least now I can measure it. Yes, the neuropathy and myopathy are really bad, but I feel so much better I'll take it. One of the biggest let downs after treatment was how long they started telling me it would take to feel better. I thought if we go in every 3 weeks, then I'd feel better after 3 weeks. I hated it when people told me this advice, but seriously hang in there a little longer, it will get better.
(re: eyelashes. Today someone asked me if I had new glasses, I said no, that's just how my glasses look when I have no eyelashes or eyebrows)
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Oh - had carotid artery and thyroid screening today - all clear!! Yeah. My mom just had carotid surgery and one TIA episode since in the past few weeks and was told is was hereditary. Doc ordered screening for me - thankfully.
Trying to get BRCA gene testing before insurance runs out for my sisters and nieces.
Firni - lost my lashes through the weekend and this am - all gone. Trying to let my hair grow this week to see what is there. But nothing under arms and shaved legs once. Brows are a fright. SO just called me to dinner - l LOVE him!!
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Thanks ladies for the encouragement. I have something going on now for the next few weeks to take my mind off things. I have my port removed on Thurs this week. Next week I have all the pre-surgery appts for my exchange. On the 29th I have my exchange surgery. Yea, no more expanders. May 6th a friend is having eye surgery so I'll be there with her. Then May 13th I'm supposed to have jury duty. So, hopefully I'll be feeling better by then. If not, I'll have my Onc excuse me.
Maybe I need to get some fake glasses so people don't notice the lack of lashes. bobcat, so far I haven't noticed any hair growth anywhere. Glad that your carotid artery and thyroid are ok. My MIL had that carotid surgery a year ago and hasn't been herself since. She thought she was having little TIAs but we aren't really sure. She lives alone about 8 hours from us. Makes it hard to help her out or really know what's going on with her. I don't think she always tells us everything. She likes it that way.
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Chelev--You might have experienced respiratory distress syndrome (I think I have that right, but I can't trust my thought process as well anymore). I had that with neupogen, but oddly, did not have it with the neulasta last time.
I have spotty lashes-a block here, a block gone there, almost looks like I did it intentionally. Maybe I should say that, as if I am creating a new look. Sorry, bad humor--just trying to keep the sense of humor working.
I seem to have the nueropathy intermittently and sometimes aching in my wrists so intense that I can hardly use them. Then, before you know it, it's gone. I also have very tender lymph nodes in multiple areas--groin, throat, underarm area; that seems to come and go, too.
I am gearing up for TC #3 on Thursday. I think I have my medication kit all ready now. Geez, I hate to even look at all the meds I take to manage side effects!
Thinking of you all and hoping for the best as we all face this challenge together!
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When all of our treatments are done, does anyone know if we will be feeling more normal? Like not having to nap all of the time and such. Or are we going to have lingering effects of the treatments for a while? For some reason today it hit me on these questions. I sure would like to really enjoy some summer months without all of this. And I was thinking that after the initial yuk feeling of my first treatment I would have more energy and feel better. I do really feel so much better than that week of hell. But I am pooped all of the time and it seems emotional or should I say mad for no apparent reason. I thought the down time would be way better...guess when they load us up with chemo and the handfuls of drugs at home it knocks everything out of us. I can deal with that as long as I know this is the new "normal" for now. About the time all of this is done guess we will be pro's at it. Never knew how creative I had become...sure like the creativity in other things but right now just doing it our way is fine with me. Never thought I would welcome the hot flashes over the full body melt down of the week of chemo and steroids. Since the buzz on my head it sure has helped with the hot flashes. And crazy not to have to have the armpits and legs...now that I can live with forever. I did find my hands were of course being washed so much I had massive dry skin and lotion wasn't doing it. Finally got smart and figured out it was the washing dishes so went to rubber gloves and now they are back being soft. Had toe cramps and wear socks all of the time or slippers in the house. Figured out for now if I wear shoes and socks I don't have those darn cramps. I hate shoes and would love nothing more than no socks or shoes but don't dare risk it. I am a smoker and found that I am smoking less which is a good thing. Memory really is poor so I never smoke or try to when laying down of course. I sure am enjoying doing little things right now around the house. My "normal" routine is shot and thats cool I don't have the energy to even worry about it. Told DH that right now I will do what I can and if I can't then I will tell him. So as I am gearing the body up for round two its giving him a break from being the nurse. When the time comes we keep a chart on what medicines at what times I take...actually he gives them to me and keeps the chart...my mind got pretty messed up after round one, so we figure its safer so I don't over medicate if he just plays nurse. We are doing pretty darn good really right now...keeping our spirits high, enjoying this better time and acting more like kids. Does anyone have chemo on April 22nd? My routine is every 3 weeks..had the first April 1st.
Hope you all are doing good. We have a wonderful group here and we are going to continue getting through this together. Keep your spirits high and laugh every chance you get.
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Nadine, a lot depends on which SE's you pick up. However, in general from talking to my Onc and other ladies and my own experience. You'll start feeling a little better about 6 weeks out, start feeling a lot better 6 months out, but my Onc said to not expect to feel pre-chemo normal for a year. Myopathy takes at least 6 months. In some people the neuropathy can linger and never completely go away, in most it improves slowly as the nerves repair themselves. The myopathy happens to about 5-7%, so in most it isn't an issue. However, remember, those of us who had a harder time and picked up SE's tend to post more often. There are some who feel better, work through chemo, and tend not to post as often here. I remember one woman like that who said she felt great starting 3 weeks out when it was the time she normally would have been going in for her next cycle. So please try not to let that get you down right now when you're starting out. Hopefully you'll be in the later group.
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Nadine, I"m there with you - I have #2 on the 23rd, so am fully prepared for another weekend from hell. I'm feeling really good this week, and am going to restart our long dog walks around a local lake/walking path tonight. I want to drag out my yoga tapes too, maybe this weekend. Last week I was tired easily by 3 pm, needed to just stop and lay down. I am only working until 3 each day, unless I have an appt., like today, and it helps - I'm home, have the dogs out and can sit down and rest by 4 pm. I think I'm like kmmd, I feel great now, and probably will right up until my next tx, and then crash, slowly recover and onward and upward. Biggest curiosity right now is when the hair will fall out. I'm 12 days out from 1st tx and nothing. One of my co-workers actually made a bet with me that mine won't fall out. I keep assuring him it will. My husband is ready with the clippers, I said let's not rush things! Let me at least get my wigs cut and styled tomorrow, so I'll have a full variety of choices. He's worried about my eyelashes, they are really long and thick. I said I can buy more if I need to!
Good luck to everyone getting their treatments or ports done this week -you will get through it - be strong! We're here for you.
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Nadine & Chelve - I have #2 of 6 on the 20th, so we're right there together.
My hair started coming out on day 12 just a little and now on day 15, I'm getting tons. I've got thick hair, so it's not real obvious yet but it's not fun picking hair off everything. It's the worst when you wash & dry it - it just comes out in chunks and it rains hair when you dry. I'll probably go ahead and shave it within the next day or so. Got my wig ready! Hair on my legs and underarms has almost quit growing - that's one thing I'm looking forward to - won't have to shave anymore. Woo Hoo! Got to look at the bright spots!
Guys hate to tell you but my SE (so far) have been real mild. I had double mass on 2/19 and #1 on 3/30 and started feeling so much better I went back to work last week. Figured I'd work while I could. I had around 4 days of feeling like crap and then started feeling better. I know it's coming and I have to keep telling myself that it's not going to last. First time I've feel normal since the surgery, so I'll take it.
Keep on posting! It's great to share and hear how everyone is doing. Hope your next treatment is better!
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