Anyone on just Taxotere and Cytoxan?
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I've been recommended to purchase a powdered form of something called Glutamine, which tastes awful but supposedly is very helpful in preventing (or helping? not sure about this) neuropathy. The recommended dosage is for days 1 - 4 post chemo (each treatment) dissolving one Tablespoon in water or juice twice a day. It's meant to be flavorless but not according to my tongue! I tell myself it's better than the neuropathy...
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About neem oil: I'm honestly not sure what it is or where it comes from but I bought a very small jar in a health food store and applied it to my scar tissue area with a Q-tip. Has a strong odor and can stain clothing but the massage therapist in my onc's office used it on me during TC #3 and it did seem to help soften the breast area. I'm doing so many "healing" remedies it's hard to tell what is causing what, either beneficially or otherwise. I guess I'm learning to listen to my body and make each decision slowly, if possible. There are so many many sources of information out there!
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ps to ann-idiot: I just posted a couple of replies, hope you see them.
cheers to you... and hope you're feeling better.
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Thank you ladies for the posting on Neuropathy. I did call the clinic. A nurse called me back and told me the doc is probably going to change my chemo drugs. She debated on calling the doc who comes two hours away only on Wednesdays to this clinic. I told her I could wait to days to see him. She did talk to the nurse practitioner and she also told me that the doc will prob change the chemo drugs. I told her since I am half way done and know more or less the SE's I would prefer to stay on the same chemo drugs. I asked what I could do for the swelling and tingling pain in the legs, ankles and feet. I told her I had elevated them but that wasn't working. She told me to do the same thing...elevate as much as possible and rest for the next two days. Darn I have waited for the good days and now with them coming to an end soon I hate to not be up and around. Not that I am doing much anyways just nice to move around the house. She told me this can be serious. She told me to write it down so I remember to tell the doc about it all...my list is already long. There concern is from day one my balance has been bad and I have fell a couple of times and stumbled even more.
I told her I was wearing socks and shoes all day and not going barefoot. And how I just hate shoes and socks all of the time. She told me I could wear sandals. Great idea, except my feet are swollen. My blood pressure medicine has a diuretic in it and its not bringing down the swelling. DH told me last night maybe I was drinking to much...how I wish...no seriously fluids. I told him I will continue to drink tons and pee like a race horse to keep everything doing its thing. DH had bought me a treadmill and my hope was to walk some on it, so now I have to wait and talk to the doc about that also...darn afraid to fall off of it also. So I guess since the nurses had no magical cure I will talk to the doc and see what he says. Myself, Neuropathy or not I want to stay where I am on drugs and just get this crap over with. I guess for me no matter how bad its got at times I made a commitment and want to see this to the end. My fear is if I don't the real end will come sooner than later...just a mental thing I deal with near daily.
Nadine
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Nadine - I so feel for you. I too had the neuropathy(still do) but I was very active and found that working up a sweat and THEN resting and drinking plenty of fluids(not martinis - darn) did the trick with the swelling. Just my experience - depends on your own body and where you started. I like the idea of sandals and the treadmill though - just be careful.
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How many rounds are you supposed to do, Nadine? You said you are due for your 3rd? I started having bad problems with swelling and neuropathy after my 4th . My onc pushed me to finish up 5 and 6 but kept asking me if I could deal with it. I didn't know once I was done with chemo, it would take months to resolve those two SEs or maybe never. It can be a serious thing and permanent. Changing your chemo drugs might set you back time wise. But if he can prevent long lasting or even permanent damage that way, you might want to think about it. Short term inconvenience for potential long term gain. You can see this to the end regardless of the chemo drugs and the time line involved. We all do it because we all have the same mental thing you deal with every day. We just want to survive and we're willing to do most anything to achieve that, but don't focus completely on getting thru treatment. Quality of life after treatment is important too. Have a good long talk with your onc, get your information and make your choices. By the way, I wear flip flops instead of sandals and that seems to work ok with the swelling in my feet. Keeps my toes from getting that burning feeling I get when I wear closed foot wear.
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Bobcat & Firni: I don't know what my malfunction is but I am just plain pooped all of the time. I feel like I have aged at least a 100 years in the last months. I get things done around the house but it takes for ever. To even vacuum the floors wipes me out. I eat right and do everything the doc says but I just feel old...and I mean way older than I feel I should. I went through one pair of flip flops today and the feet got swollen so fast I could barely get them off...the second was a strap on pair and with in a half an hour I was near ready to scream (never liked those anyways)...the third pair was again another pair of flip flops, the feet just weird...I continued to wear those until I was done with supper. I put my slippers on and took a nap after dinner. Then I got up off of the couch and proceeded to fall (my feet just went out) and right into my husband in his chair, bad luck I stepped right on his bare foot I guess. He was more shocked of my falling at the moment than his foot. As we all know, I didn't know what to expect with the chemo and SE's. I have one heck of a time it seems. Round one was pure hell. Round two has been easier and can tastes foods, now this foot and hand crap.
I am supposed to have only 4 treatments...so I am half way done. I feel this evening like a big baby but I am sick and tired of being sick and tired...seems time drags and its always something. I/we will talk to the Onc on Wed and see what he has to say. I want to do whats best overall...I am just damn scared. Plus I want the o'l me back with energy that doesn't stop...this new me right now sucks. I hate the weight gain also. I would love to jump on the treadmill and go like no tomorrow and can barely do 5 minutes now. And I feel like I am sleeping my life away, popping damn pills and being poked more than I have in my entire life. I just want it all to end. I am hanging in there because I know my life is on the line and I will do what I must do to be a survivor...but I just want an end and the old me back. Plus I am so tired of feeling like a baby all of the time.
Nadine
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Nadine--Wow, I'm so sorry to hear of your side effects. I hope your meeting with your onc results in something that will make this process easier for you. You will return to your old self, it's just going to take awhile. It does for all of us. You're not alone in that. Right now, just try to focus on one day at a time.
I'm sending you thoughts of healing.
Catherine
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Hey Nadine -whats happening to you?you make sure that you get that sorted this time-I suppose we have to have some se's but Im sure that we arent supposed to come out of this disabled. I am shit scared of taxotere which I will start for the 5th one -Im sure I am going to have a reaction -dont know why totally unreasonable. They can change it for abraxane which does the job with less se's.Dont worry about looking and feeling awful -we all do and although it seems too long already time will pass (so I keep telling myself) Im staring to feel like a kid again -need my Mum-how crazy is that? I have my sisters and they listen so thats good. My mouth is like the inside of a wrestlers jock strap-its awful like its burned and have got permanent morning sickness that lasts all day and talk about being a fussy eater-never know what I want to eat.
Now its your birthday tomorrow (time zone) so remember lots havent got that far AND you will be celebrating again and again.Pity Im not near to get you a cake so Im sending you a telepathic huge one and a big hug.
Good luck tomorrow and write when you can
Anna xx
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Nadine, your malfunction is called chemo. I had decided that I was just going to breeze thru chemo and not let it take me down. That was not the case. I was pretty much how you described. It would take me 3 attempts just to empty the dishwasher. My legs were so weak I was afraid to take a shower if DH wasn't in the house. I didn't start feeling able until about week 5 after my last chemo. Patience is soooo hard. The weight we gain with chemo doesn't come off with exercise anyway so don't feel bad about not doing anything. You have to let your body rest as much as possible to heal itself. Now I'm 7 weeks post chemo and I'm dropping weight like a mad woman. It's visibly noticeable. I've lost about 10 lbs in the last week. I've not changed my eating nor have I started exercising coz I'm still on restriction from my exchange surgery. It does sound like shoes are a major problem for you and I don't have any more suggestions for that. You might think about getting a quad cane ( the kind with the 4 feet on it) for your balance. I know you don't want to. Falling and breaking something is worse than using a cane tho. The last 9 months of my life spent in this cancer tunnel has seemed endless. There were times when the light at the end of the tunnel has been no more than a pin prick of light. And I have to say that depression descended on me like a black cloud for a long time. I feel like I'm almost to the end of all of this tho and feeling better every day. Only a couple of issues I'm still dealing with. I figure it takes 9 months to create a life. It took 9 months to save mine. I'm praying that God gives you the strength to make it thru your tunnel as well. Let us know what your onc says tomorrow.
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Eadsla: I guess I am impatient. I had more patience early on but they are starting to run thin. I just get pissed off sometimes at this cancer stuff and why it is not only effecting me but so many wonderful people. I pray each day for a cure!
Annadou: Good memory on my B-day tomorrow. I also wish you could be here. We have to be at the clinic at 8 in the morning. Means leaving by 7...no hair to fix and now shaving so a quick shower and dress. Not going to have a cup of coffee this time. Not going to take my blood pressure medicine since it has a diuretic in it. Going to chug a lug water all the way to the clinic which is about 45 minutes drive away. Hope those veins pop right out there this time. When I talked to the nurses yesterday the plan is skip the lab and they will do the blood draw. We have my list of questions ready for the doc. Was thinking of putting on make-up tomorrow but shake to much for mascara so going to do the eye brow pencil (brows are way light and thin), blush to look alive, lipstick and call that part good. If its warm going to wear shorts...could care less that my legs are white...if its cooler dress jeans. For a top I will wear a tank top...cooler a fancy top with lots of lace. Figure its my birthday and I am going to look the very best that I can since all of this started in February. I never sleep good the night before treatment even with the pills to help. But I am going to march in there like the fighter I am, but in a ladies way. So tomorrow I turn 55 and cancer or no cancer this is going to be a good day!!!
Been having problems with little energy. Last night I fell asleep on the couch around 8, woke up at 10, checked emails...told hubby to give me my night meds...fell asleep until 2. DH always has a hard time getting me off of the couch and to bed. Anyways slept until 6 this morning and went back to the couch and woke up at 8. Sure felt good! Will send you Annadou an email later tomorrow as to how the day went. Will post here for everyone what the doc says on the feet and hands.
Going to try and do 5 minutes of sweating on the treadmill today...got to try and feel like I can do something...if nothing else a short nap will perk me back up.
Many many thanks to everyone...you are the best group of ladies I have ever had the privilege of knowing and talking with. I hope everyone is doing good...and sending happy thoughts and hugs to everyone.
Nadine
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Nadine - hang in there girl, we will get through this. I'm inpatient also, I so want to get this over with but I'm half way thru and will probably have radiation which I don't want to think about yet. Hopefully, your onc can help make it a little easier for you. HAPPY BIRTHDAY!
Had 3rd treatment yesterday and so far so good! Just waiting to see what this one brings. Thrush, constipation, feel like crap, aches and pains. I'm just ready to be done with this but still have possible radiation, reconstructive surgery, remove port and hysterectomy to go thru. I've never wanted a year to pass so quickly - sorry got on my pity party!
But we deal with it to get thru this and come out the other side a new person without that nasty word CANCER hanging over our head. We will WIN!!!!!!
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Firni: I love hearing about the weight loss...sure gave me a boost of hope. With warmer weather coming I sure would prefer not to look like a beached whale...just a middle age (ouch that hurt) woman. Can't wait to join you on the other side!!!!
Cat1:Good luck on your SE's hope they are mild. How many treatments are you scheduled to have? I have only 4 and hope none is added. I had my hysterectomy when I was in my 20's, years ago...best thing I did even though it had to be done at the time. I decided early on that I wouldn't go with reconstruction....I figure enough surgeries and at my age I will do the prosthesis instead. My understanding is no radiation but guess I should add that to the list of questions for tomorrow...I think a month after I am done with chemo then I go on the 5 year drug therapy.
Well my dear ladies, nerves always set in the day before treatment. Got a long list for the doc. Ready to pull up the sleeve and let the vampires take the blood and go from there. Thanks to sleeping pills and my blessed anxiety pill I hope to sleep good and get tomorrow going when it comes. I generally feel good day of chemo, so already told DH I want a special day after we are done with my treatment. Don't want to over do to much because the "shot from hell" comes the next day. So going to fill the medicine's and make sure we are stocked up on things. Will let you all know what the doc says tomorrow. Keeping my fingers crossed and trying to give up my pity party and have my last good evening for a few days.
Hope everyone who has or is having treatment this week has mild SE's. Will be thinking of everyone. Sending smiles and hugs to everyone.
Nadine
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Good luck tomorrow Nadine.
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Hello Ladies...just wanted to Pop in and say hello....
I haven't posted here since my last chemo session. I wanted to check on Nadine and I see she has been having some crazy SEs...well I am post last chemo Day 17 and I have feet swelling all of a sudden too. It started after my port was taken out last Friday and then on Saturday I had my PETSCAN and when I got home I could hardly get my shoes on. Weird...puttin them up helps a little but not much..
I begin my radiation on Thursday...and I am hearing more SEs are coming...with fatigue and boob sunburn...I know most of you ladies are still in chemo hell and it will be short lived...and you will be on to Rads before you know it.
Good luck everyone.....
Hi Nadine...GOOD LUCK tomorrow!!!
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Nadine - I've got 6 treatments - so 3 more to go! Yeah, I'm not looking forward to more surgery but I want to get back to looking normal again. Doing the hysterectomy for all the normal reasons - don't have to worry about those cancers, no more babies, and was told it would cut down on the 5 year drugs. At age 51, pre-menopause is here anyway (plus chemo brings it on) so why not - to many advantages to not do it. Hope all goes well today!
Cruise - let us know how your rad goes - I may have that to look forward too and curious as to how it goes.
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Lemonjello.....I know exactly what you are saying about the smell!!! I could smell it on m skin...in my room and in my bathroom. I cold even smell it in my pee. YUCK!!!! I'm 7 weeks out anf finally don't smell it anymore. I hated that part.
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Hi Ladies: Got #3 done today. Blood work looked good. Gained more darn weight. Doc put me on medicine for depression...I was crying something terrible all morning...so I am glad for this new med, hope it works. He told me I won't feel doped up but it will help. I will be on this for at least 3 months. I had my questions to ask. No radiation at all...lucked out there. The 5 year drug therapy is to counteract the hormones that the body produces naturally...and as far as side effects he tells me my hot-flashes will be worse. Oh well I can deal with that. My blood draw turned out to be okay. The veins are going down hill fast. The nurse used a smaller needle and the only vein she could get was once again in the hand...so blood draw and chemo was done there. Every suggestion was used but they are pooping out fast. First time I have had little bruising. As far as my feel the doc feels it is a result of the steroids. Since I am already allergic to steroids this isn't helping. He felt it is in part to water retention. I continue to have the tingly pain so will keep track of that and for sure call him if it gets worse.
So drinking tons of water and ready to jump in and see what the SE's bring this time. Well better load up on the handful of meds and get some sleep...been a long day and don't want to start this round off being to tired. Will let you know how this goes this time. No matter what I only have one more chemo to go and will be on the other side soon. Going to try and not fight this so much this time and see how it goes. Doesn't do any good trying to fight the SE's because they will do what they will do.
Hope everyone who had chemo this week is going good. Hugs to everyone.
Nadine
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Bravo Nadine
Only one more to go-your are nearly there
Anna
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Good Morning ladies. Hope you all have a good day
Nadine, hope the new med works fast for you. You need a break! Like Anna said, only one more treatment to go!
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Thank you ladies for your encouraging words...You are all the best!
Does anyone ever really sit down and read the inserts they give you with your medicines? I was reading this morning the insert for my new depression medicine the doc prescribed yesterday. You have an increased chance of suicide and it tells the family to watch you for signs of suicide. Give me a break if a person was suicidal would the doctor actually prescribe such a medicine for a person??? Sure glad those are not my thoughts just don't want to be on the emotional roller coaster. Sure glad suicide isn't on my list of to do's. I am just wanting to fight this cancer crap and be done with it and be a survivor.
Was up and down all night in the bathroom. DH gave me my night time meds and I went to bed...great sleep even with being up every two hours. Woke up at 5 this morning thirsty as can be. So chugging water...flush this crap out quick! I have noticed that when I am on the steroids the hot flashes seem to come more often and harder. DH didn't give me my nausea medicine last night and wanted to wait and see if I could handle it without them. I broke down and took one first thing this morning, the stomach was doing flip flops...could be nerves of here we go again or just that feeling of the porcelain god waiting for me to bed over it. I decided take the pill and prevent both ends from doing its job at once. So far so good actually. Going for the shot this morning and know I will have some body aches but prepared to fight that. Spirits are actually pretty good this morning.
Hope every one has a great day. Keep your chins up...we are getting through this even if its in baby steps. Sending happy thoughts and hugs to everyone.
Nadine
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Hey Nadine, Glad to hear you're doing ok this morning. That suicide stuff with the anti depressants seems to be more prominent in teen agers. None of when thru all this just to commit suicide. I'm glad you're taking whatever meds you need to get thru. Hope your day goes well.
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I"m also on the TC - 4 sessions. Had session #2 last week. Lots of fatigue, strange taste in my mouth so I'm eating less healthy - lots of simple carbs that go down easy and trying to keep up my fluids. I was told to keep mobile and get exercise but there were some days that I couldn't move. I took claritin this cycle and so far have avoided the nasty bone pain that I had last cycle - just twinges. I did have flu like symptoms for a couple of days - aches and pains but no fever. From reading the posts, it sounds like round 3 is harder than round 2. I'm having a little bit of peripheral neuropathy but not bad. Will this get worse?
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Nadine - sending good thoughts your way.
Bobbi
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My onc reccommended vitamin B6 for the neuropathy. My rounds did get worse, I think its cumulative. I got Emend from the onc and it really helped. They warned me it was expensive but my insurance covered it and it only cost me $20 for each month. It worked great. Also the steroids can keep you awake so I got a presription for ambien.
The antidepressants they give for hot flashes ( Effexor) are a FAR less dose than they give for depression so the side effects should not be the same.
Lynne
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Hi everyone
I am also taking T/C 4rounds. I just got done with round 3 and the side effects are definitely getting worse. I get very achy and tired on day 3 and that lasts thru day 5. Then I am very fatigued and just have to move very slow. Then I have one week of feeling pretty good. No nausea which is good but I have constipation that moves into diarrhea. Now I have very red checks and neck. Anyone have a good vitamin, lotion for that. Pain on my pad of my foot, water retention, blurred vision etc. I am also going to be starting radiation in June and need to have my ovaries removed. I was wondering if anyone knows if I can have them removed at the same time as radiation. It would be nice to have some normal time when this is all done. I have lost all my hair but still have eye brows and eye lashes. Well please respond if you have any suggestions for my problems. You all sound very nice. I am glad that I found this thread
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I've got a very similar treatment scenario ahead, with oopharectomy (what a word!) and radiation, so I'm looking into advice about the timing and sequence of it all. My onc said it's important to wait at least a month after chemo ends (5/27 is last T/C for me) before doing other things like surgery in particular, so I'm imagining that all of June will be a resting period for me. As for the redness on the face, I've found that calendula lotion/cream works really well, especially if it's a good brand like Jurlique (health food stores carry it) or maybe even something for babies.
I'd love to hear from others who are beyond the final T/C and looking at both radiation and ovary surgery.
One other question: I keep searching to see if there is anyone else who has had so many lymph nodes removed with only one positive node? I feel so devastated by the aftermath of this in terms of nerve pain and slooooow healing in range of motion, not to mention my absolute terror of lymphedema. It seems as though everyone else's lymph node numbers are so much lower than mine (27 total removed.) It's a done deal, of course, and I keep telling myself to simply accept it and move on, but I feel extremely damaged.
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Yes, elizrosner, I've other women talk of more nodes removed, some of them almost twice as many. Have you seen anyone regarding lymphedema massage, sleeve etc? It might relieve your mind to get some teaching and to be able to be proactive. (sure helped me)
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elirozner
While I did not have quite as many nodes removed as you did, I had 17 taken out, 15 of which were positive for cancer. I had my lumpectomy at the end of February, and my range of motion is just now improving with physical therapy. I am told that I do not have lymphedema, but I do have axillary web syndrome, which basically means a lot of scar tissue has developed under my arm where things were removed, making range of motion challenging.
But good news is, it can be fixed
I have only been doing 2 simple exercises that the PT showed me, for a few weeks, and already, I see improvement. I used to have severe tugging pain all down my arm right to my fingers, barely able to move my arm or hand. It is so much better already.Talk with your surgeon about a referral to a PT...it is well worth it. We have to keep those arms moving, break up any scar tissue (not sure if you have any, my guess is maybe as you've described your ROM), and get the lymph redirected to the nodes we have left. The body will readjust eventually, I am told.
I hope this helps
Nadine L.
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My last time, I had 5 weeks of rads following chemo and about 4 weeks after that I had the bso.
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