Starting Chemo in September?? where are you ladies
Comments
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Mary Jo, I know exactly how you feel. I am divorced (for 6 years, after 20 yrs. of marriage) and my ex's family (at least part of them) have shown more concern that any of my extended family. I work w/ my brother so I see him 5 days a week. My parents winter in New Mexico but left town (from here) 2 days before my 1st tx. Sorry if I sound bitter. I have friends (at least I thought they were friends) for 20-25 yrs. and some of them have never acknowledged my cancer. Like you said cancer really does make people uncomfortable and they don't know what to say or do so they chose to do nothing. But it still hurts. My son choose to move away 2 wks. before my 1st tx and that really hurt. I think I cired more about that then I did about the diagnosis. That is one of the reasons I have reached out to all of you. At least we all understand what we are going through, especially all of the ups and downs of emotions. Chemo-pause doesn't help either! Well enough whining from me!
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Hi Mary Jo, I too have the sweaty scalp thing going on. I chocked it up to menopause. I have had some minimal night sweats but the sweaty head is defintiely a problem. I'm not wearing wigs, and had to switch from scarfs to something warmer, fleece hats or stocking hats. I go bald at home too. I thought it was just me. Puts new meaning to being a hot-head! lol!
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My eyes were like that too Cheryll... It seems that as your eyelashes fall even though you may not notice it - your eyeballs do and so they produce tears to WASH out, what those amazing eyelashes usually KEEP out. I was worried about an infection too, cos I wake up with gummy eyes, but apparently according to onc. clinic, tis my tears protecting my eyeballs and overproducing liquid. That is providing of course that the drainage is clear, your whites aren't red and you don't have any greeny ickey stuff included with itching. I just have a tissue and dab eyes now and then, seems to work. (diffferent tissue for each eye) They tell my it is from the C (cyclophosamide) don't remember if that is in your cocktail.!
Karyll
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One taxol down. I actually slept good last night but I'm sure it was from hunting. I didn't get back into treatment mode til bf drove me to the appt, then I cried the whole way. I did manage to stop before I went in. I felt kind of sick during the tx. I think I had hot flashes, too. I kept rolling my pants up and taking my bandana off. The benedryl made me a bit drowsy but I didn't sleep or feel as loopy as some described. And I've got the steroid jitters though not bad. I took advantage of the energy and got the housework under control.
I'm really nervous about the pain they say sets in about day 2. The onc gave me vicodin but I've had panic attacks taking that stuff in the past. I try not to take anything more than tylenol/advil/aleve. I started taking L-glutamine, glucosamine chondritin/msm, and fish oil in hopes to help with the joints.
On a positive note, I've been drinking a lot. I got sick of the power aid and bought some SoBe Life Water. Sometimes I mix water with a splash of juice. I might try that Special K protein water. I had to pee constantly during the tx.
Cheryll: chemo a lot of times dries the eyes, but I have read on other threads of people saying they're eyes were very watery.
Mary Jo: Hope your tx went well. You're such a trooper. I try to have your attitude about not getting sick (hasn't worked so good for me, but glad you got thru AC so well). I too do needle work and other things (like tying my fishing lures) so hope we don't get that neuropathy crap. If I get it, I'm going to talk to onc about doing the every week tx with half dose. If that doesn't work, we're going to have a long talk about options because quality of life is important to me.
K, done blabbering. Happy thoughts everybody
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Hi Cheryl,
My eyes water constantly from chemo -- I asked my onc about it last week and they basically said there is nothing I can do. I actually wake up at night with my eyes sealed shut because of the amount of mucous -- yuck! My combo is cytoxan and taxotere. I also suffer from an eye twitch since my second tx -- I hope that goes away. It is a little embarassing if people think that I am winking at them!
I am finished my chemo -- yippee -- now I have to start thinking about my implant surgery and then about my options for hormonal therapy, i.e. tamoxofen or removal of ovaries or ..... I meet with the oncologist in January and we'll decide then. She asked me to take part in another study ..... I doubt with other cancers there are so many decisions.
Laurie
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Good luck on Taxol gals Pax, Mj , I will have mine on the 29th ( 1 week break between AC and Taxol due to Thanksgiving woohooo !!! ) Let us know how it went.
Pax your posts are giving me fresh air I feel all cooped up in the city here but love the outdoors. ( except the 'doe' part
.. I am not a vegetarian but still felt bad about it )Cheryl : Tearing, I read somewhere that since we lose some of the eyelashes and have less protection we get more stuff/dust in the eye, thus the tearing.
Urbie My eyes get bloodshot too couple of days after each tx I put some otc Systane eye drops which seems to calm/relieve it ( did not run it by the onco though)
My problem is a skipped period and then the second one came and is going on fooorrreeevvveeerrr ( almost 2 weeks now) it is very light but bothersome. So much for intimacy issues hehe.. how can one feel 'hot' when you are bald, with weird boobs(expanders hard as a road bike tire),bleeding and constantly nauseaus ohh and add the fact that since I seem to be craving all the 'wrong' stuff a steady weight gain..Yesterday had a craving for ham and cheese sandwich, ate a whole baguette with cheese spread and ham. arghhh..
But I finally found out why I always am craving the 'fatty' stuff. If my stomach is empty I get nausea but if I eat hard to digest stuff like fries and cheese it takes a while for it to empty. Hoping that Taxol is easier on my body,.
Oh and for anyone having constipation issues I found a really good remedy. Soak 3 prunes in boiling water at night ( in a large coffee mug or bowl) in the morning drink it and eat the prunes first thing. It seems to have worked like a charm for constip. I take them proactively 1 day before each tx and continue for a couple of days.
Ohh questions my oncologist is making me take 5 decandrons 4 hours before the taxol.. is that what you gals did too ?
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For my tx, I started taking Decadron 24 hours before my tx -- 8 mg in the morning and then 8 mg in the evening. On the day of my tx, they gave it to me in the i.v. and then I took it in the evening. Again, the morning after my tx. I was on taxotere, though. I found it very difficult to sleep with the steroid in my system! Good luck.
Laurie
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CONGRATULATIONS LAURIE!! Must feel awesome to be done with chemo. Good luck planning the implant surgery, the ovary surgery if you have it, and your hormone surgery.
Tri: No one told me to take decadron before tx. When I got there, the nurse did ask me if I took it and I said no. I think she just put it in the IV then. I had the decadron jitters all day (nothing bad though). I felt some nausea during tx and the rest of the day (again nothing bad). They told me I'd feel good the 2nd day and then the bone/muscle pain would start either during the night tonight or tomorrow. I am nervous
I know what you mean about the doe. I used to hold funerals for the deer when my dad went hunting when I was a kid. And I'd feel just horrible when the baby birds would fall out of their nest and land on our air conditioner. Seeing any living thing in pain bothers me to some degree. So, it strange that I hunt. But we supply ourselves with our own meat. I'm into a more sustainable lifestyle. I feel fine about eating an animal that lived a natural life and was killed as humanely as possible verses a raised one sent to a slaughterhouse. But its definately not for everyone.
Mry Jo: How you fairing after tx?
My weight goes up now at every appt (which is a DUH if you see what I'm eating). I'm really trying to tone it down. I bought yogurt to eat in the evening instead of my giant bowl of cereal and brownie. And I'm not going back for seconds or piling on the food at meal time. Hopefully I'll feel better during these tx's and be able to exercise more, too.
Well, happy day everybody!!
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Hey Mary jo: r u doing dd taxol every 2 weeks or the every week for 12 weeks tx? I'm doing dd and will be curious how ur feeling. If the bone pain is unbareable, I'd like to try the every week tx because I've heard it causes less SE.
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Hi Cheryll - I have had LOTS of eye problems that I have been told are from the Taxotere. Chemo apparently clogs your tear ducts so the excess tears don't have anywere to go but down your face. I cannot wear my contacts at all anymore - too much redness, burning and pain, and thus - tearing. I just had TX #3 yesterday and they say it won't cause long term damage.
An eye doctor friend of mine suggested "It should resolve after your treatments and your tear glands recover. They will recover. However during your treatment you need to keep your eyes very well lubricated. When you resume treatment start a tear supplement such as genteal gel every 1-2 hours or optive tears. If this is not helping use refresh pm ointment every 1-2 hrs and use refresh pm at nite always. The ointment is hard to put in. The best way to put it in is to keep it warm in your pocket. Then pull down the lower lid and put 1/4 inch of ointment in. Also start omega 3 at least 1000 mg a day."
He is good and I trust his judgement. He lives about a 1000 miles away from me or I would go see him! So about one and a half more months of sore eyes and then onto the new year! Good luck.
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Good morning everyone!
I thought I'd report in after my first Taxol tx yesterday, and I must say I am feeling just fine! None of the weird queasiness that I had after the A/C, and I am pleasantly surprised! I hope my experience encourages you Taxolers! They gave me steroids and Benadryl along with the Taxol, and Benadryl is not my friend. I went to sleep almost immediately in the treatment chair, which was most embarrassing, since the tx room was full of about 10 patients plus their friends/spouses, with 5-6 nurses bustling around, timers going off, cell phone ringing, bright fluorescent lights and there I lay, just napping away! My husband touched me on the arm several times just to see if I was still alive, because I'm usually wide awake, reading and chattering. I did take Ativan yesterday morning before tx, so that may have enhanced the Benadryl effects. The Ben wore off and the steroids kicked in about 2:30 this morning, so I'll be face down at my keyboard this afternoon about 3 pm.
Paxton, I am doing the 12 weekly taxols. I hope you don't get the bone pain too badly. Not sure when mine will kick in. They told me to take tylenol or aleve for it, so maybe it won't be too bad. And I am in the same weight boat too. As of yesterday, I have gained 15 pounds
but I think my appetite has slacked off now and I am hopeful that I can start losing now with some effort on my part. Your comments about hunting reflect mine exactly. I am a huge softie when it comes to domestic pets and do not like to see any animal in pain. But I feel like you about the purpose in hunting. I would recommend everyone who eats meat to visit a slaughterhouse- it is not a nice place to be. And I respect those who have different views than I about hunting. But hunting is not all in the "kill"- it is getting outdoors, in total peace, in tune with God and nature. I hope everyone is feeling well this morning!
I have a question for you all: has anyone been offered a study on Bisphosphonates as Adjuvant Therapy for BC? I cannot decide whether to say yes or no to this study. It is being done to find out if adding biphosphonates to hormonal therapy or chemo will help prevent cancer from spreading to the bones or other parts of the body. In the booklet they gave me at the cancer center, there are numerous side effects from all the drugs in this "three-arm" study, and I am very hesitant to do it. I just worry if, down the road a few years, will I regret not taking it should the BC return. Does anyone have any input on this? What would you all do? Laurie-- you mentioned a study-- what is yours and are you doing it? Thanks for any help you can give me!
Take care everyone and I will check in again soon!
LOVE AND HUGS,
Mary Jo
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Mary Joe, what Phase is this clinical trial ? I would not consider anything lower than Phase 3.
I googled the Bisphosphanates:
These are drugs that build bone strength. They work by increasing the activity of the cells that make new bone. They are used to treat osteoporosis. They are also being studied for: reducing the risk of bone pain caused by cancer that has spread to the bone; and treating hypercalcemia (when calcium levels in the blood are too high). Examples are Fosamax (chemical name: alendronate sodium) and Actonel (chemical name: risedronate).
Is the following the trial you have been offered ? It seems to be Phase 3 which is good Adjuvant Bisphosphonates for Breast Cancer
There are mentions in several articles on how they are supposed to prevent bone mets. Sounds an interesting/promising clinical trial to me and supports my personal hypothesis that lifting weights will keep our bones strong.
Note: tried to find the possible side effects and ran into this website of a law firm but no other reports like this seem to be around.
http://www.zometalawsuit.com/breast-cancer.htm
Digging around this is all that I found.
These drugs are relatively free of side effects, but may cause bone pain, fever, and conjunctivitis among other minor side effects. These drugs are also known to cause impairment of the kidney function. Your doctor will monitor the kidney function while you are on these drugs and will stop the drug if it is affecting kidney function -
Hi Trigeek,
Yes, the link you include is the very trial I have been offered, a Phase 3. Thank you for all the information you have given me-- I hadn't taken the time yet to google it, so I really appreciate the link about the study and about the lawsuit. I am still very hesitant about enrolling, but thanks to your research, I now have more information about it! My husband and I talked it over during dinner this evening and he pretty much agrees that I should decline the study. It bothers me that I should have the stress of making the decision about this and worrying about the "what ifs" down the road if I don't enroll, along with all the other stress I have right now! And it seems to me that the staff of the cancer center is pushing this pretty hard. It sounds to me like the researchers know that the drugs can stop bone mets, so why don't they prescribe them now?
Again, thanks so much for your info. I'll let you know what I decide...
Mary Jo
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Its tough enough just learning your path report when u get dx'd and then onto the tx. I've been really frustrated with the lack of information or overinformation. Its difficult to pin the doctors down on what's out there and what's really going on.
I talked in length to my onc about my concerns with the neuropathy from taxol. She said there are other new tx's that have less SE, but she said they haven't been studied enough and she felt taxol was the best option as things stand now.
It just all feels like a Catch-22.
I didn't feel nearly as queasy yesterday as I did on tx day. The joint pain/body aches are starting. Nothing Advil isn't taking care of, but its early yet. I keep doing stretching exercises to stay loose.
I got my appointment set up for genetic counseling for January. Now I have to grill my family about anyone who's had cancer. My biological grandma had bc. That's the only one I know.
Mary Jo: sounds like you've made your decision. Its not right they're being so pushy. Makes it that much harder on you and like you say, we don't need that right now. We're all already freaked out about whether we're doing enough and doing the right things, you don't need this too yet. Stay strong!!
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Cheryll-- My eyes are tearing alot too...I think someone here said it has to do with losing eyelashes... the eye makes up to clean it out because you have less lashes to catch the dirt and dust particles.
Paxton -- Glad to hear you had a great time hunting. Hoping your taxol tx are okay for you too
Mary Jo -- Happy Veterans day to you and your family...and hope all goes well for you to with you taxol tx.
For all the others hoping all is good with you
ttyl
Janice
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Hi!
I'm still reading over the information that Trigeek sent me-- I just want to feel totally confident of my decision and quit going back and forth about it. I still hope some folks post more information about their experience with it.
Paxton, I'm glad you're feeling better. And yes it is all a Catch-22! Do you get lots of heartburn with your Taxol? I have been belching frequently
and feel like I have a bubble in my chest at times, just like when I have a GERD flare up. Still taking the Zantac they prescribed at the cancer center. But I have no nausea or queasiness at all, in fact I feel really energetic, finally! I have to drive three hours today for an overnight job-related trip, so I hope I do ok-- I dread being away from home and my dr. (and hubby!) that long. No body aches yet, but I've got the Advil ready. So, Paxton, do you think movement helps the aches? Hi Janice, I don't get the tearing much but my nose is just pouring water-- is that part of the Taxol SEs? My face was blood red and puffy yesterday so I got a little panicky and called the cancer center and they told me it was a steroid side effect and it would go away in a couple or three days. It's much better today and I don't look like I've been slapped and sunburned!
I hope everyone has a lovely fall day!
Mary Jo
The NP at the cancer center recommended 50 mg of Vitamin B, three times a day, for the neuropathy, but I can't find just Vitamin B. Or maybe I'm just dense-- is there just a Vitamin B without B3, B6, B12, etc?
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The aches are definately setting in. So far Advil is helping enough. I do believe movement helps, kind of like people with arthritis. I'm sure the night will be a little tougher just because I won't be moving. But so far this is tolerable.
Mary Jo: My face turned red, too. I read about it on another thread so I wasn't worried. A friend shot a weird 16 pt buck yesterday so we had to go look at it. When I got home and looked in the mirror, I noticed the red face looked like I'd been popped in one eye and a cheek. Hope nobody thinks bf hits me.
I've never heard of vitamin B without the numbers. You can get a Vitamin B complex supplement. Let me know if you figure that one out.
And my nose runs, too. Haven't had the teary eyes yet.
I've been making some progress with the diet. I bought a bunch of those yogurt packs. I eat one whenever I want a snack (instead of ice cream, brownies, and cake) and it helps with the stomach problems from tx. I also make an afternoon snack out of my metamucil cookies (how crafty is that?). And no seconds at meal time.
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Hi Paxton,
I just wanted you to know how much your postings make me smile! I needed to laugh a little. I can just picture you with your red face eating your metamucil cookies!
I kind of had a grumpy day today -- just am getting over feeling sick from my last tx and I feel like people forget that I am going through chemo. I just wanted to scream at the people at work today -- In June, I started a new job and found out about my cancer three days later. So, have been dealing with learning a new job and handling the mastectomy, reconstruction, and chemo without missing very many work days. Maybe people just forget that chemo is a toxin?
Anyway, I wanted to let you know that you make me laugh!
Laurie
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Laurie: glad I could make u laugh. I know what you mean about people sort of forgetting we're having chemo.
I think even my bf is hitting that point. Most of the time I'm glad he kind of keeps things going because I think its good for me. But sometimes it'd be nice to have a little tlc.
This morning he asked if I was able to carry in wood for the wood stove today. I can barely walk across the room from the joint pain from my taxol tx. I just had to laugh to myself how funny people can be. He never did carry any wood in either and I sure as hell aint gonna.
My joint pain was at its worst at bedtime but advil still made it quite tolerable. I expected to be locked up this morning but it seems a bit better so I'm very hopeful this won't be so bad. If my labs look good, I won't have to have the neulasta shot either so maybe that will lessen the bone pain even more.
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I start the Taxotere on the 29th November. I am nervous about this one because I cannot be laid up for any length of time. I will be popping the pain pills I guess to get through. Thank heavens for my job or I would like around and wallow (especially if I am having pain, I am a wimp). Half way through for me. Three more treatments before radiation (which I am still undecided about) and in the New Year hopefully I will have some more control over things.
WOW 2008 will be a better year right? I met a gal at look good feel good today who is actually on her third diagnosis and third treatment which I found discouraging but she is UP. The other lady ther was a 17 year survivor. SO ya just never know. I painted on weird eyebrows and it is a good thing I am not meant to go anywhere today I tell ya... lol....
Blue day, allowed blue day I guess and feeling a bit sorry for myself and my moonie face. Got lotsa hugs though.
See you soon. Taxotere experience stories welcome.....along with hints.
Karyll
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Hi Karyll,
I just completed four rounds of taxotere/cytoxan. For me, I suffered from wierd side effects -- rash, nails turning black and sore (they haven't fallen off), muscle pain, swelling in my hands/feet. All in all, though, it was much easier for me to get through than I thought it would be. My tx's were on Thursdays, so I would take that day off, go to work on Friday, be a little yucky over the weekend, take Monday off and sometimes Tuesday off. Then back to work as usual. If you have any specific questions, let me know.
Laurie
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Hi everyone and Happy Friday!
I hope you all are doing well this morning. I am having some ouchy Taxol pains since last night-- at least I think that's what it is. I'd like to know what causes the pains-- does anyone know? Someone described it as growing pains, and that's what it feels like to me, just stabbing pains that jump around? Paxton, is that what yours feels like? You made me laugh too, especially about the wood-- maybe you oughta give bf a red eye and cheek of his own for asking you to carry in wood
! Laurie, it's ok to feel grumpy-- I have those days too, especially when someone starts whining about something really petty, I want to jerk off my scarf and say "hey, be glad you have hair!", but I have done well to contain myself so far... And Karyll, it's ok to have the blue days too-- I've had those too, as well as days that I cry for no apparent reason. And yes, 2008 is going to be BETTER, for sure!! We just have to focus on those long-term survivors and get our inspiration from them, and I've met lots of them so far!I made it back from my trip just fine, had a great time, and even got to spend the night with my daughter instead of in a hotel room, which made the drive to the meeting a little longer, but everything went great. When I arrived down east Thursday, the temperature was 78 and sunny, then yesterday coming back to the mountains, I ran into heavy snow flurries, fierce wind and 25 degrees. That's our great North Carolina weather for ya!
Have a great weekend everyone!
Mary Jo
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MJ: glad your trip went well. Sounds like some fun driving weather though. A lot of the time my bone pain does feel like growing pains. It started with my hips being kind of achey. I'm doing dose dense so I'm wondering if mine isn't worse. Ive been hobbling like a 90 year old since Wed. My knees were the worst at first but now that got a little better but the ankles are acting up.
I'm very disappointed I've also got some numbness in my fingertips today. And I am so tired. So far, I'm not impressed with how much easier this is suppose to be. But the only part that really bothers me is the risk of permanent neurapathy.
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Karyll - I have finished 3 of 4 Taxotere/Cytoxan and the eye issues have been the worst side effect for me. In hind sight, I would use the natural tears eye drops 4 to 6 times per day and the Refresh PM eye ointment at night before the burning eyes happens. And, if you wear contact lenses, I would avoid wearing them during taxotere txs. Although, I seem to one of the few to have this problem...
AND, I am hungry, but I cannot taste anything!
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Tanx ladies - so much fun ain't it? So, eyes, fingers, toes, joints... hmmmm... and blechhhh I was hoping food would taste okay on that one.. *sigh*... OHHHH WELLL.... got two weeks to chow down...lol
Karyll
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I'm trying hard to have a good weekend. Some relatives of my bf are staying with us for the weekend to duck hunt. I'm tired and emotional and just don't have the energy to sit around and bs with everybody. Tonight a friend is having everybody over to grill some moose. I don't know if I want to go. They'll be sitting around drinking beer and talking. I find it difficult to adjust back to normal life after I've been a sick hermit all week.
And I know I'm still gaining weight. I'm trying not to be hard on myself but its hard not to feel crappy when you feel weak and see yourself consistantly gaining and gaining. And what a time of year to watch what you eat.
My best friend since the 10th grade is coming home for Thanksgiving so I'm going to spend it with her. I'm excited about that at least.
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Hi Paxton,
I hope your weekend turns out ok anyway. I don't blame you for not wanting to go and bs with everybody. I just came back from my daughter's baby shower and I didn't feel really great before I went, in fact thought I was getting a fever, but after I got there and the party started, I felt good and had fun, but boy was glad when it was over and I could come home and get into my pj's and on the couch.
I'm right now at the 15 lb mark with my weight gain and it makes me so mad! But, like you said, what a time of year to watch what we eat. I've still not made much progress in exercising, but we're supposed to go scout some in the morning so maybe I'll burn off a half a pound or so. Try not to worry so much and don't beat yourself up about it-- you're not alone, if that helps.
Have fun with your friend at Thanksgiving, and have a great one!
Mary Jo
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Hi again,
This is a question for those of you taking Taxol:
Are any of you having any really weird stomach/gastrointestinal problems? If so, what remedies have you tried? My stomach is making very loud grumbling noises, am having diarrhea
(not the constipation that was predicted by my chemo nurse), sharp stomach pains, and discomfort in my colon. I have also had some problems with hemorrhoids, something I've never had until now. All this has been going on for about 3 days, about the time the Taxol pains and aches began. It just seems that the Taxol has hit me in the gut, but at least I'm not nauseated...Thanks,
MJ
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Hi everybody!! Hoping you all had a great weekend
I seen my rads doc last Thursday and he said they are going to change the amount of tx. I will get 16 only and no double doses! yeah! I got mapped for when I start them... it didn't hurt just little pin pricks. Oh yes...the best news...tomorrow is my last chemo....yeah!! I just can't wait to get this all over with and get back on track.
Hope everyones tx's are going good
take care Janice
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Hi Janice,
Sounds like you are in a great place! I'm so glad you for you.
MaryJO, your taxol SE sound so much like my taxotere SE (I only had the diarhea once though)...Nexium really calmed my stomach, but the hemorrhoids are truly the pits.
It's funny, my little baby toenail fell off a month ago and was black underneath and I kept thinking...I don't remember dropping something on my toe and bruising it...well duh, I just realized it was from the taxotere! I had to laugh at myself at how I forget.(must be chemo brain) I also went to starbucks the day after my last tx and ordered a coffee and sent it back because it didn't taste right...They made me a new coffee and I left...about an hour later I realized it wasn't the coffee, it was me! My yucky tastebuds had kicked in and I felt so badly... That coffee lady probably thinks I'm nuts...oh well!
I'm so sad, my husband's mother (who lives in Germany) is having some heart issues and is in the hospital. He may have to leave to go see her. Which I fully support, but he may miss Thanksgiving and my next chemo if he goes. I pray she's ok, she is wonderful lady.
I hope everyone's Thanksgiving prep is going well. Have a great day!
Marietta
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