Anyone on just Taxotere and Cytoxan?
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Catori - sorry you've had such problems but I guess congratulations are now in order since you're done chemo. Regarding 3 vs 4....my oncologist told me to try one treatment and then we'd assess how I did on it. He said we'd take one Tx at a time and that I could stop at any time. He said how ever many I do are better than nothing so please try to look at it that way. You did three...just not four and that's better than one or two. Hope the B vitamins help.
Sherri
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Sweetheart - wow...you've experienced some problems with your eyes. Sorry to hear. I've really only experienced tearing and a lot of twitching, which is driving me up the wall. Other than that, my vision is pretty much the same. Are you sure it's Taxotere and not the steroids? I know they can cause cataracts and other vision problems. I hope things improve for you.
Sherri
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I'm interested in hearing from the ladies who've finished their TC treatment, either 4 or 6 cycles. I'm about 6 weeks out from my last and final chemo. I had lots of allergic reactions to taxotere. Everyone here was so patient and supportive with my litany of nasty side effects. Anyway, I'm really bothered by the fact that I can't seem to get my physical stamina back. Specfically I have bad muscle pain and stiffness in my calves, thighs and hip/butt area. It's the kind of pain you'd have the morning after a strenous workout, but it never goes away. I haven't been exercising in any strenous way. This pain is coming from just walking around, making a point to take the stairs at work and stuff like that. A friend of mine swears this is neuropathy from taxotere but I thought neuropathy was nerve pain and tingling in one's hands and feet -- not stiff and sore muscles. Anyone have any similar experiences? It's really discouraging.
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Lottie - I'm beginning to wonder if the Decadron steroids are the culprit of many of our problems .I have certain spots that sometimes get inflammed but only once and a while -- a spot on my neck and another in my SI joint -- and never both hurt at the same time. Well, when on the steroids, nothing hurts at all but the week after all my potentially sore spots hurt. It's almost like the other extreme from being on the steroids, i.e., nothing is inflammed at all when on them....to more inflammation than normal a week later. This has happened after each Tx. Decedron supresses serum cordisol but I wonder what happens after we stop taking it...does our body end up releasing more cordisol??? Just my "unscientific" theory.
Sherri
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Lottie...the symptoms you describe are EXACTLY what I am having. My muscles feel like they have been overworked but they feel like this all the time...24/7. Night seems to be worse, when I go to bed it is very painful and hard to sleep/difficult trying to get comfortable. I also have the eye twitching which has increased to not just my eyes but my forehead, cheeks, around my lips etc. Just random twitchng. My Onc believes ALL of this is sign of a very bad nerve damage and has scheduled me to see a Nuerologist on March 1st.
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Sugar, thank you for the Congratulations, although I feel like I failed my treatment somehow. I am just worried about having a reoccurrance since I didn't get to do the final tx. But you are right, 3 are better than 1 or 2.
The B100 vitamins are to help repair the nerves according to my Oncologist. Hopefully they will help.
I wish all of you still going through tx the best with no side effects.
Peace and Blesings to you all.
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Thanks Sherri and Catori.
So, Sherri, you're suggesting this is sort of a re-bound effect from being on steroids? That would make sense for me since I had to do lots of extra steroids (prednisone and solumedrol) in addition to the "bag o' decadron" I got with every treatment.
Catori - i had the eye twitching too, but it did go away and all of the tearing from my eyes has improved too ... my right tear duct was scarred over from taxotere and the left one was barely open. The seem to be better now.
If this goes on for another week or so, I'm calling my oncologist. I'm sure he'll love hearing from me (not!).
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Lottie I hope you are right that this eye thing will go away... it is sooo annoying.
I had the bag of decadron with every tx too.
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Hi all,
I just wanted to let you know that according to my ophthalmologist, my cataracts were caused by steroids. I also had arthritis of the eye (the other eye). I was already wearing glasses, but my vision was not that bad, I could see very well far away. I mostly needed reading glasses. Nowadays I have a harder time seeing at night and distinguishing colors at night.
When my eyes were diagnosed in 2006, it caused quite a commotion. I was in a place where there were a lot of ophthalmology students. I asked my doctor why they were all curious about me, and he simply said, "Oh, it's because you have something that an 80 year old would normally develop through many years. You managed to do it in months..."
For some reason, though, it wasn't bad enough for my insurance to warrant paying for surgery.
I need to reiterate something though: You are all unique. Mine was a very special case. And, even with the knowledge that steroids would further cataracts and other visual problems, I was still willing to take it with the TC. I could not risk an allergy attack. I have to stress that steroids are very, very important in warding off allergies to taxotere and taxol.
Lottie: Have you been checked for lymphedema? You can get them in your arms and legs because you have lymph nodes there. I noticed that 2 of your nodes were taken out (though they were negative, which was good.) But every time you have nodes taken out there is always the possibility of lymphedema. I did not get LE after the first Dx., but I may have to consult an LE therapist this time around.
Don't panic, read everything in stride, research well, and take care.
Brenda
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Jumping in to say "HI," ladies. Glad to see some of you are finishing up. For those of you who are having a tough time, hang in there.
About stiff joints and tired muscles - it can be really tough in the months following chemo. I had awful muscle pain all over for a while. Joints were so rusty that I walked like an old man. Sleep was uncomfortable. No way to roll over or lay on on side or another without bone and joint pain. Give yourselves some time. And I mean months. I am 4 1/2 months PFC, and things are only just starting to improve. But it IS getting better. Stay positive. DO NOT give up on yourselves.
Much Love, Mary
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Barbara - I am one year out of TC and just scheduled my oopherectomy for March 9. Onc wanted me to wait until I was feeling healed and energy back before proceeding with more surgery. I am anxious to get this last step over with and hope the recovery is not that bad. I know you are anxious and it depends on your doctor but I was glad mine waited as I really do feel better than I did even a couple of months ago. FYI - I exercise daily and take lots of vitamin supplements and did this all through surgeries and chemo. It really seemed to help with the SE's to "sweat it out". I did not have rads. Hope this helps.
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Sugar77- How are you feeling this week? I'm feeling pretty good so far - although I feel like I might be getting a cold. My DH had a nasty bug last week, so if I manage to fight it off when my WBC is so low I will be amazed. I plan on being a couch potato today and hope I can fight it off. I have a new SE that has just come on in the last couple of days...HOT FLASHES. BLAH! At least being bald helps keep it from being unbearable...I would think it will feel worse with hair.
Barbara - I have been thinking of getting a complete hysterectomy.....I figured I might as well get rid of everything since it sounds like menopause will be just right around the corner for me. I haven't talked to my ONC about it yet. I had a previous ONC mention a trial where ovaries are shut down chemically - I think it is called SOFT trial, my current ONC hasn't mentioned going on it though.
Liz
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Liz - I had hot flashes all last week. It was very strange. I'm feeling pretty well other than I've got a cold. Just heading out shopping for bit now.
Sherri
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Hi Lottie, I am 8 months post TCx6. I too had overwhelming weakness and pain in my body during the last three treatments and for many weeks after. It felt to me like someone had removed all the bone and muscle in my body and replaced it with wet sand. Everything was heavy and hard to move. I could not do stairs or even walk out to my mailbox. I also had tremendous pain in my feet from the neuropathy. It felt like walking on golf balls.
I first noticed some improvement about six weeks out. It was slow going, but once it got started I could see little improvements slowly happening every day. Once I was able to start walking better, I forced myself to do walks and that compounded the positive effects.
I have always been quite active. I have also had quite of few debilitating injuries and horse wrecks, but the thing that I kept hearing myself say to people was how strange and surprising coming back from "weakness" can be. That was new for me and I was shocked at how long it took to get back to some sense of strength. Here I am now, back to yoga 3 times a week, getting out into my garden (missed out on that last summer) and looking at my horse who has gotten really fat while waiting for me to get better LOL!
Be selective about activites and don't push it. The strength will come back and before you know it, you'll be answering this same question for someone else and find it hard to believe you were once in the same boat
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echosalvaje -
Thanks so much for the encouragement. And you're describing it perfectly -- my legs feel like they're filled with wet sand! I think I've dodged most of the neuropathy that many of the ladies here suffer. And you're right about how shocking it is to experience this weakness. I'm no athlete but I do lots of walking, ride a motorcycle when the New England weather allows and never really shied away from physical stuff. So, it's been scary and discouraging. I'm about 6 weeks out now and I do feel better than I did, say, 2 weeks ago. Give your horse a scratch between the eyes for me.
Lottie
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Mommaof 2 and Bobcat:
Thanks for your thoughts. I talked to my onc yesterday who agreed given my extensive history with ovarian cysts and now BC that it would make sense to remove my remaining vestige of ovary. She didn't think it was necessary to do a complete hysterectomy because the risk of uterine cancer from my course of Tamoxifen was so statistically small why have the extensive surgery. I spoke briefly with my gynecologist today. He suggested that if I was going to have my ovary out, he would recommend having my uterus removed as well. He told me that he was not pushing for a hysterectomy and that we could monitor with ultrasound. I am leaning toward complete...my paternal grandmother had ovarian cancer and I have taken significant hormones for IVF. It makes me anxious that sometimes you get differing opinions. I think the time has come. Just figuring out when. I want all this crap behind me, but after 3 treatments I am tired and I have yet to start radiation.
Sugar77-
Your thoughts about steroids intrigue me. I too have struggled with some hip and back pain. The first few days after chemo, the pains seemed to have disappeared. Then last week, they were back with a vengeance. Today they have disappeared. Interesting.
I hope everyone has a good weekend without any SEs. I am not looking forward to my crash. Be well.
Barbara
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Barbara - all good thoughts. My grandmother also had ovarian cancer thus another reason I am going for the ovary removal. I had my uterus out 5+ years ago because of adenoma(non-cancerous). I kept my ovaries at the time because I was still pre-menopausal. Now that I'm through menopause and taking Arimidex it's just the right thing to do. One thing to keep in mind -as long as your uterus is normal size you can have the hysterectomy done vaginally saving another large incision and big healing process. BUT - right now you are going through enough. Finish your chemo, do your rads, deal with se's, get lots of rest and then start to heal. You didn't say what surgery you've had but I know you have to get through that healing process also. You'll have time to make big decisions when the all the treatments are complete. Have a good weekend - drink lots of water
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bbd, bobcat is absolutely correct. My hysterectomy in 1983, due to uterine cancer, was done vaginally. No abdominal incisions at all.0
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Hi Lottie: I am also 6 wks post last chemo, I am so impatient to get on with everything! I went to my son's basketball game at 3 wks after chemo, and my husband had to pull me up the bleacher steps. I had huge tears in my eyes immediately because I realized how limited I was. My leg would not step up on it's own. It's amazing the things we take for granted when we're healthy and able-bodied, isn't it? I went to a basketball game last nite and made it all the way to the top bleacher ON MY OWN! Yay! I still feel the heaviness in my legs and my hips feel like they're going to separate from my body. I researched on a neuropathy web-site and believe I remember it saying that neuropathy does affect muscles and strength....I will go back and read it again, my memory ain't what it used to be either!
The neuropathy in my hands/feet is soooo frustrating. I'll have a good day and think it's going to get better and then WHAM back to burning/tingling/pain again. Feet are worse than hands, especially at night. I've been back to work for 2 wks now and have had to take my shoes off my feet would hurt so bad. My shoes that I wore before and during chemo now feel like they're too small. If anyone has any suggestions about dealing with the foot neuropathy I would love to hear them....can vitamin B100 be bought OTC?
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Psalm121 - congratulations on making it up the bleachers! I walked about 1/2 mile from my office to the train station last night and the night before ... a big accomplishment. I was feeling pretty proud of myself until I had to increase my pace a little to get out of a crosswalk ... then that feeling of dead weight in my legs came on again. So, I have a ways to go. I don't have the burning/tingling pain you describe and I'm so thankful. Hang in there. Also, I took alpha lipolic acid and l-glutamine during chemo (I'd skip these 2 days prior through 2 days after each treatment). I read that alpha lipolic acid is good for neuropathy pain.
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Thanks, Lottie, I will try your suggestion. I'm taking Multivitamin, Calcium w/vitamin D, and Vitamin E (onc recommended this for hot flashes)....and my Vitamin T (my way of psyching myself up for taking Tamoxifen!!) so one more couldn't hurt!!
Ooohh, I had the hurry-up experience, too! I can only imagine what I must have looked like trying to hurry in my hobble/waddle way of walking!! If there was a WD-40 for my joints....I'd have to sign up for that too!!
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Barbara - It is frustrating getting different opinions, I guess I would go with the advice of the specialist doc....seems like they would know best. I guess my thinking was if I was going to get ovaries removed, I might as well just get rid of it all. Of course, I haven't talked to ANY docs yet to get an opinion from them and don't have any information about recovery time, etc. which would influence my decision. I also went through IVF - just one round, but I had A LOT of eggs retrieved. I always wonder if there is some connection between that and my getting BC, even though my ONC say there isn't a connection, I still wonder. I have an adorable 5-year old boy from my IVF, so I would definitely go through it again. I hope you are feeling well and have a good weekend!
Liz
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Psalm121, regarding something that can be done for the neuropathy pain in the feet, when I was overcome with it years ago, one of the things I used was a lotion or cream that contained Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation that this cream creates. Pain relief usually doesn't occur until after you get used to the heat. Doctors may suggest you use this cream in combination with other treatments.
I would strongly urge you, however, to double check with your doctor that there are not contraindications with capsaicin use during or after chemo.
It WILL get better, and neurotin DOES help, so don't be afraid to ask for it. It's an oral medication and is safer than Topomax (I do NOT recommend topomax to anyone with temporary neuropathy issues. I was taking it for a short while and one of the side effects is an interruption in one's ability to communicate verbally. It's a type of mild aphasia called anomia. I could not get simple words out like "radio" and "shower curtain." It was so frustrating, especially since I made my living as an executive speech writer. I could WRITE with no problem at all, but what executive is going to trust a speech writer who can't form the simple questions during the speech interview?!?)
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I'm day 3 out of my first chemo and only feeling slightly tired. Nothing major. I had a tiny bit of trouble sleeping last night, but that was because of the steroids still whizzing through me. I will admit that the "feel good" meds wore off and I woke up sobbing in my bed, somewhat overcome emotionally with all that is going on.
I had a MILD patch of nausea, probably closer to just queasiness, but took a Zofran anyway. REALLY want to stay ahead of that.
I'm so sorry to hear above the women having problems with nausea. That is one of the things I dread (next to the hair loss).
I did some computer work (updated some pics for my husband, did some administrative stuff for the upcoming annual meeting our HOA is having, email some of my blanket-making volunteers to coordinate some stuff), so that was fun.
I took a shower, finger combed my chemo-cut hair, then went out to drop the meeting announcements in the mail and get the car washed. Felt sort of normal!
Had egg foo yung and rice for lunch.
Waiting for the "other shoe" to drop! LOL
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Ezscriiibe, good to hear that your first round is not kicking your butt. What you said about Topomax was scary, but I am happy to know that there are prescriptions out there that might control neuropathy. Mine is getting worse, 12 days after my 6th and last round.
Liz, I am so happy to hear that your IVF attempt was successful. I have a friend who tried it 3 times and failed. Very devastating. I am pretty sure there is no connection betting attempting IVF and bc, but, there are a lot of women with bc who have never had children. Like nuns and women who never married.
Psalm 121: Vitamin T - very funny! I may have to take vitamin AI. I can so relate to the heavy legs and fatigue. I’m glad to know that this is all temporary. I hope that whoever said that is right.
bobcat: How long have you been taking Arimidex? What are your S/E’s, if any?
Lottie: It’s encouraging to me that, 6 weeks out, you feel better than you did after 2 weeks. I do have the wet sand in my feet feeling, and it seems to be getting worse, not better!
echosalvaje: Thanks for your story and words of encouragement!
Sherri: I also am having hot flashes now and then, and I’m post menopausal.
Mary, thank you for updating us. I’m glad that it keeps getting better, though the wait could be longer than we thought. Please keep us posted on your progress.
Take care, ladies!
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Brenda - I have been on arimidex since March 09 - well, I guess that is one year almost down. My SE's are joint pain in hands, wrists and knees. My BP also went through the roof but doc won't attribute that to arimidex. Well then, what is it from? I exercise and eat right and have always been completely normal BP and now on medication for high BP. Coincidence? I just don't know. I'm also having trouble losing any weight at all and it keeps inching higher no matter what I do. I realize some of this may be age(53) but it's just too coincidental to me and depriving your body of estrogen throws everything out of whack. Has anyone else been struggling with the weight? Regarding the joint pain: I did an 8 week acupunture study back in the Fall and was pain free for 2 months following but now it's all back again. Hot flashes!!! I've lost my lashes and brows again for the third time(my chemo was over last Feb) and the onc said this WAS from the arimidex - lovely. But I am an expert at drawing on the brows and wearing dark brown shadow all around the eye. 0
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Ezscriiibe/Michele:
Thanks so much for the info, I will definitely be looking for that capsaicin. My husband keeps asking me if I would try Aspercreme (sp?), so now I have to tell him he has great instincts!! Also, my sister suggested Neurontin, which I had heard of but I guess I'm stubborn and hopeful at the same time. I'll try the Capsaicin first and see what happens and I for sure will be contacting Onc if I don't improve soon. Also, thanks for the heads-up on the Topomax...I already have trouble finding words, so that would probably have the same effect on me. I've noticed people "helping" me with words, kinda like you would a child....sigh.
I so pray that your SE's stay minimal. It's a good idea to always stay ahead of the nausea like you're doing. I too would feel more queasy than nausea and tried very hard to not let it progress. If you haven't already noticed it, be on the look-out for chemo-mouth. Just having that bad taste in my mouth would make me sick to my stomach....and honest, dill pickles seemed to help. They were sour enough to over-come the metallic taste and in a weird unexpected way, helped settle my stomach. I've only recently stopped using the plastic utensils and started using silverware again. Biotene mouth rinse is also very helpful (Rite-Aid, Wal-Mart) I would use it everytime I brushed my teeth and it would help to minimize the bad taste so that I could eat something and tolerate it a little better. Chemo can be extremely harsh on teeth/gums/mouth, and the Biotene helps add just a little bit of protection.
Yesterday I went to have an echocardiogram done and went to some furniture stores afterwards and also ran my car thru the car-wash. One pretty day and I've already gotten the spring-cleaning spruce-up-the-house urge!!
Best wishes and thanks again for the advice
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Adnerb/Brenda:
Yeah, vitamin T! I basically have a positive attitude and have found that laughter (even at my own expense) is very therapeutic! I've even tried the "but I'm sick" (said with a southern drawl) as I batted my two eyelashes, and my husband thought that was hilarious! He tells friends he's impressed with how quickly I get ready to go somewhere now....I'm even faster than him...cause I don't have to SHAVE!!
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Neulasta and weakness- Would neulasta be a cause of any of the weakness, aches and pains that many of you are describing post completion of treatments?? The drug helps manufacture white cells that come from our bones and I have been reading your posts of weakness and that is exactly how I felt after the shot for a short period of time, climbing the stairs took my breath away! Perhaps this added drug could be some of the reason, for longer term problems?? Thoughts???
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Hi Leta:
You pose a very valid question, but I didn't have Neulasta with my chemo regimen. But it does seem like I have seen/heard somewhere that the body creating new white blood cells could create weakness and fatigue. I constantly had low RBC count during chemo and my WBC count was always high? So many questions, so few reassuring answers!!
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