TRIPLE POSITIVE GROUP
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Today I am thankful for many things.
One, I am alive.
Two, the woman in this forum have given me support, love, and knowledge that only another triple P can understand.
Vicky
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Happy Thanksgiving To All!
Besides being thankful for family and friends, I am now ever so thankful for finding this community of women sharing their experiences. I silently read and learn more and more each day. Thank You.
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Happy Thanksgiving to all my lovely neighbours to the South
. I too am thankful for our community here. Thanks, Mods, for the referral to the Mojo board. I knew of that thread, but recall reading something about a particular product here on our TP forum.
Thanks also to all of you for your responses re: my liver MRI and other. It's next week.
I have the book Forks Over Knives along with a few other books, and will be picking recipes that look appealing!
Welcome to the new ladies here...you are in great company with this criwd
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Good Morning America, and Canada) I hope your Thanksgiving's dinners were delicious. Even if do not not celebrate it here I want to tell you that I am very grateful that I found this forum and got acquainted with all of you, it really did a lot of difference for me.
I have a question: anyone retaining water from Taxol and what did you do?
I gained a lot of weight on Taxol but the weeks after I gained even more even though I started to control what and how much I have been eating, no sugar, minimum carbs. This week I saw that my legs swell towards evening and I am getting bloated so I though I must be retaining water. I saw my nurse today at the clinic and she said that this is a common effect of paklitaxel and that deuretic won't help, it will subside on its own, my kidney values taken on Monday looked good too. I also start EC on Monday so I wonder whether it will contribute to more swelling? I also have pain in my legs and feet, well, and in my back, but according to the nurse these are the common SE from paklitaxel too. If deuretic cannot help is there anything one can do? I really like went up 5 kg in two weeks, it cannot be all weight.
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Hi HapB, no right now I am not, I am starting EC next week.
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I too have edema ( leg,feet swelling) and mine all started 4 weeks past chemo. My heart health is excellent and I have also been told that it is due to chemo and no diuretics will help. It starts ok in tne morning and swells throughout tne day, night being 5ne worst. I was told to excerise and put my feet up and not crossing legs). I bought some magnesium lotion that helps, also mineral salts in tne bath. I was to.d it is an after effect from tne steroid surgery that I was givn during chemo. Compression socks hel my feet but my calves get huge
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LTWJ, you just basically described my symptoms but my worst swelling is around my belly. First I thought it was due to C but now when I got that part under control and my thighs started to swell so I cannot do the exercises my PT prescribed, I understood it must be water retention. I mean I could do these exercises last weekend and now I cannot bent my knees to stretch my thighs, on Monday I was laying down with my leg bent underneath me, yesterday I could not do it.
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Swelling from taxanes is super common, I had this as well, but my MO did prescribe a diuretic that did not leach potsssium and was easier on the kidneys, triamterene. I started it during chemo and I stayed it on it for almost a year, finally tapering off. It worked well to eliminate the fluid retention and caused no ancillary problems
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SpecialK, I remember reading on this thread about many of you who did Taxotere retaining fluid. One year sounds a really long time, but right now I am worried about shorter term consequences, i.e. how would it affect me during my upcoming EC treatment? I feel some discomfort where my kidneys are supposed to be, it could be just my back or paranoia.
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All,
I swell. It started when I first had chemo and continues with Arimidex. There are days I can not get my wedding bands on.
I take a daily diuretic and a potassium pill. Both are a prescription. I have difficulty emptying my bladder without these.
By now you have probably figured what I said when I got the statement that this may or may not help. Really I said. Are you the one trying to pee and get on your rings? I got the prescriptions. My MO renews them like clockwork.
Also, my GYN told me after my hysterectomy and when I started Arimidex that I may need to "retrain my bladder." I asked why. He said with the estrogen blocker I may experience some constriction. Sometimes I think my GYN knows more about side effects than my MO! I hope this is not too much info, but I do find myself sitting differently to empty my bladder. I can easily urinate off 2 pounds in the morning.
Vicky
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coachvicky, I have no problem to pee, in the morning, a couple of times during the night, a number of times during the day. I drink a lot of tea and water, had a coffee today.
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Hi everyone. I have been taking arnica Montana for swelling for the past two weeks. It has helped so much with the tightness and swelling from the reconstruction. I'm not sure if it is ok to take with chemo since I was told I had to avoid all supplements other than a basic multivitamin. I was not aware swelling was another of the evil side effects of anastrozole.
SpecialK, I hope you are feeling better and that you are getting your hearing back.0 -
Suburbs, you are right, no supplements while on chemo, I will try certain foods butthe chemo will affect even my taste, I do not know, no other suggestions from my clinic but to wait and see, I guess I just have to endure.
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Hi Cherry-sw. One additional idea for swelling is water infused with cucumbers, lemon and parsley. I am not sure if 1.) infused water helped or 2. ) that the act of preparing infused water forced me to drink it and increase overall water intake helped. Either way, it can't hurt. Hope you get some relief
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Suburbs, thank you, I am really good in drinking water, I have my tea with lemon by my side and then I just pour some more water into this 800 ml mugg and drink, drink, drink. I a few hours I brew a new cup and so on. What is happening right now has never happened to me before, by the evening I have a pregnant belly. I will prepare cucumber water before EC, everybody says that things start to taste funky, even water
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Cherry-sw,
I'm a big tea drinker, too! But, remember that caffeinated tea is a diuretic. I limit myself to two cups of tea a day and drink lots of flavored water.
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cherry, with your swelling you may be drinking too much. It's important to drink to flush the chemo and its breakdown out, but if you drink too much water you can dilute you bodies salt levels and so your kidneys will try and adjust. 2 - 2 1/2 litres of fluid per day is a good amount. So talk to your mo about how much to have. Hope you get some relief!
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ElaineTherese, I delute my tea with so much water so eventually it turns into flavoured water, if it is diuretic then I shouldn't retain water, right? But I do.
HapB, my nurse says it is typical for Taxol weeks after treatment and that diuretic won't help.
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Binniebin, I always drunk a lot of fluid especially tea, but never had any problems. I will count how much I drink per day starting from tomorrow. MO office says to hydrate yourself, they never said that drinking too much fluid can cause swelling
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Cherry, it might be a good idea to check with your doctor about limiting fluids. Sometimes it's necessary to limit it, but it depends on the cause of the edema
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lita19901, I will talk to the doctor before treatment tomorrow but since my creatinine values are fine my MO office said there was nothing to worry about if it does not get worse. I took measurements around my belly, things and ankles in the morning and in the evening as they said and have been laying down with my feet upagainst the wall for several hours yesterday, it is mostly my stomachthat swells, feet are no that much anymore.
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HapB. I agree with you. I knew about this, and it does make statistics not as truthful when we are looking at our numbers. It happened with my aunt. She had BC in the 80's, mastectomy and rads, 9 positive nodes....9...tamoxifen was her only drug. This oncologist must have not done well in college! Early 90's mets. She had such harsh chemo, was never with any quality of life, passed away, death certificate said nothing related to breast cancer. Same thing happened with my father, as far as death certificate having no mention of cancer.
I am not big on stats because I have fallen into the small end twice. I feel the big numbers in stats are not realistic and that is why so many of us are shocked when we do not fit inside the good, big numbers. Just my opinion
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What goes on your death certificate is dependent on who fills out the paperwork - this is not necessarily the fault of oncologists. Which physician attends your death and has the authority to list cause of death, what information is given at that time, and how much detail is provided on the certificate itself all factor into how the following statistics are reported. The different geographic entities that issue death certificates all have a number of lines for reporting cause of death - some are pretty short. How cause of death statistics are compiled is the responsibility of the National Center for Health Statistics and SEER collects information from a number of sources, on both living patients and those who have passed away. It is important to note the distinction that if you die as a result of cancer treatment, the treatment is what killed you, not the cancer. The death is not a natural development of the cancer itself. You may have received the treatment because of the cancer but the cancer is ancillary.
hap - the video you linked is interesting but I am always careful to consider the source - this gentleman is an anti-chemotherapy crusader who sells his own products. He claims he cured his cancer with nutrition but he really cured it with surgery.
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I haven't posted in a while so I'm jumping into it with an unrelated topic, but I've had 5/12 Taxol + Herceptin treatments, and the side effects are getting worse, but still tolerable. The hair loss caused a minor meltdown, even though I thought I was prepared, but the side effect that bothers me most now is that nothing tastes good. Yesterday I ate fried eggs and 2 English muffins and slept most of the day. Then I was really hungry at dinner and ate brisket and fries. When we got home, I became ill...my first time doing that since I started chemo. I then craved an orange (highly unusual for me), but it stayed down.
I know you've probably all shared a thread like this before, but what do you crave and what works for your diet? I've been craving salty and sweet. Also carbs, but bread tends to taste dry and rough. Disappointed that favorites like coffee don't taste good. I also seem to be constantly craving chicken broth.
Thanks for the tips. Xoxo
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Dannajae, I finished my last Taxol three weeks ago, my taste was not affected, olive oil tasted little more bitter, otherwise it stayed the same. I also craved chicken soup almost all the time until probably 8th Taxol, then my hemoglobin value did not recovered as it used to and I craved red meat, liver, some products that contain blood like Swedish blood pudding, I never ate it before, tried once when I was very young. Now I eat a package a week, just fry it in the pan. In the beginning it was more carbs and sugar but now it is more protein, sugar too actually, this is how I gain myself 10 extra kg. Now I do not have any idea how to stop gaining and start kosing instead, but I suspect I retain water. The hair loss was hard, I agree, if I knew it would be so traumatic I would have done cold caps.Cherry
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I haven't posted for awhile but now after 4th taxol I'm experiencing really bad acne and this morning my hair is really falling out. I haven't shaved my head yet because everyone keeps saying to wait until it looks bad. I've heard that my head will get more sensitive if I wait. is this true? I have also been gaining weight and craving everything. I don't know how to eat healthy anymore and feel so guilty for getting out of control.
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bjquilter...sorry to hear, but glad I am not alone. Unfortunately, I just had my 5th Taxol and am eating everything in site and a lot of junk. I loved junk before but this is so much worse. Last week after Taxol 4 my hair really started shedding a lot, so much so that I had it buzzed to 1 inch long. Previously on taxotere, I was completely bald, this time with Taxol, not yet at all. Wearing my wig, but do not need to wear a cap at home or to sleep. Hoping some remains on my head for the next 7 but not so sure.
My head did not hurt this time, but it is very itchy. Hope this helps to know you are not alone.
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Dannajae. I ate many cans of baked bean soup, I was able to tolerate this throughout chemo. I ate alot of peaches and enjoyed peanutbutter sandwiches. Anything salty I couldn't deal with. I was unable to drink tea as it tasted terrible. When my platelets were low, I craved red meat and I am not usually a big meat eater.
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hap - I get it, but it is possible to attribute a death to cancer caused by treatment if it is spelled out on the DC - if this is a concern for you as an individual, I would specify that this be recorded as cause of death. Tell every doc who treats you and get it in your medical records that this is your request, and tell your family members. What is recorded on the DC is actually very suggestible to what the attending doc is told by family. In many cases there are several lines, so causes of death can be multiple. Also, FWIW, you can spin stats any way you want - that is why I specifically pointed out his bias. Predict 2.0 was built on more recent stats, and I feel it is pretty reliable. Did you MO at DF run Adjuvent Online for you? Does Predict run consistently with any other info you have been given by your docs? Hearing loss is not better, but the ENT says this can take a while. I am not particularly hopeful and am now focused on finding ways to cope and move forward. It is what it is.
dannajae & bjquilter - I ate mostly bland foods and also craved salty - mainly because I could taste it. I would just try to eat what agrees and doesn't cause GI issues, and worry about eating healthy and/or losing weight after chemo is done. In the week before the next infusion (I was every 21 days with TCH) I ate a lot of red meat, even though it seemed carboard-ish, to try to keep my hemoglobin up. With weekly Taxol that is harder, but things like fortified cereal and Greek yogurt have protein and are pretty easy to tolerate. Melon tasted good to me and I also had smoothies. My one remaining vice is coffee and I found that instant Taster's Choice was tolerable - so weird. I ate potatoes in any form, but mostly loaded mashed potatoes, lol! That way I got some protein and the potatoes were mild. The weight you are gaining is most likely fluid retention. You have to eat about 3,500 calories and not burn it off to gain a pound - I definitely did not eat enough to do that yet I gained 15 pounds by the time chemo was done.
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KimCee, Thanks for the feed back. I think I just have to go with the flow. Maybe get a little more exercise. Not knowing how much worse it may get is difficult but I'll enjoy the good days or moments and pray my way through the bad ones.
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