TRIPLE POSITIVE GROUP
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Anyone with balance issues since chemo? I'm finished taxol in February of 2013. I'm doing ok with the neuropathy, which was pretty bad in my feet for awhile. I take a mondo-sized B vitamin every night and pee bright yellow in the morning (unused riboflavin), but I think it has helped immensely.
Where I'm struggling is I sometimes feel like the floor is slipping out from under me. I wear flats, no heels or wedges. Anyone else get this?
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Pbrain Didn't you see the picture of my chin when I fell this past April power walking to work on facebook? I was wearing running shoes. Needed 3 stitches. I still wear heels and sometimes feel I am more balanced in them. The have to be a thick heel and not platform, about 2"-2.5" is best. My nueropathy is mostly in my left heel although sometimes a bit more. Feet get sore all the time now.
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My neuropathy was in the front of my feet, the toes and ball of the foot area. I wore flip flops to work yesterday. Haven't worn them since chemo. I had so much trouble walking all day. It was like my feet forgot how to hold the flip flops on plus it itched like crazy between the toes. We have cameras throughout the building. I'm sure I gave someone a good laugh.
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What is this thing you call balance?
Yep. Have actually taken the tumble a couple of times. I quit wearing heels during chemo-neuropathy got too bad. I wear comfy shoes AKA wide and ugly.
I think some of mine is hypotension due to the on-going cardiac drugs from the herceptin induced heart failure. But not all-I am unbalanced. In so many ways.
And, there was pink crap on a food label in a grocery store this week. I guess Pinktober is like Christmas and Halloween--showing up 4-5 months early.
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fingers on right hand are numb, bottoms of feet feel like the are not connected, when barefoot, feels like walking on rocks. Balance issue not to bad. Off main chemo, hope arimadex will not make it worse
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I find the neuropathy can become more noticeable with weather changes (especially rain), humidity and sometimes extreme cold.
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Definitely the cold affects neuropathy. I learned that lesson the other day. I wore sandles, but it turned out to be a cooler day. I went grocery shopping.They had the ac blasting in the store and it was freezing. My feet went so numb I couldn't feel them! Had to cut my trip short
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ok ladies I am 2 chemo treatments away from being done 2 more tchp to go!! I'm trying to get everything lined up for what's next. I plan on getting a double mastectomy no radiation due to no lymph nodes involved I will have another pet scan and a SNB done at time of mastectomy to be absolutely sure.. My question Is which hormone therapy works best for triple positive I am leaning towards arimidex I heard it works 17% better and I want my chances to be as low as possible to have a reoccurance I read her2 doesn't respond well to hormone therapy? I am only 30 so no menapause yet so I will have to take out my ovaries or do Lupron does anyone have any suggestions???
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Lets just say I hate that you are only 30 and having to deal with this crap.
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steph - the AI drug used in the SOFT trial I believe was Aromasin (exemestane). Here is an article:
http://www.ascopost.com/ViewNews.aspx?nid=20664
For info purposes - my onc favors Femara due to its slight statistical edge in recurrence prevention, but often with AI drugs you have to try them out to see how you do on them - people have different experiences with all three and often have to experiment with which offers them the least side effects, and it can be beneficial to try different manufacturers of the same drug, to find the right fit. Glad you are nearing the end of chemo!
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thank you for the info I think I meant aromasin I haven't done much research on this yet because I wanted to get through chemo first.. So I read for taking aromasin instead of tamoxifen reduces reoccurance rate by 34%! That's a big percent to me I am upset about the side effects reduced sex drive and vaginal dryness will not make the hubby very happy but I have 2 young children I absolutely will do anything to stay here for as long as possible. Does anyone know much about Lupron shots and ovary removal neither sound fun but the thought of getting shots injected to my ovaries freaks me out
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Hi Steph!
I'm getting Zoladex shots rather than Lupron to suppress ovulation. My MO put me on Zoladex because she said it would be easier to get my insurance to pay for it (unlike Lupron). Alas, Zoladex is a monthly shot (whereas Lupron can be given less frequently, I believe). Since I live so close to my MO's, I don't mind it that much. I haven't really noticed any side effects such as vaginal dryness. I do get some hot flashes, but I was getting those from chemopause anyway. Aromasin has been OK, too. It did make me moody, but then MO prescribed Celexa and that cleared up. Good luck!
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Steph,
Both my MOs in LA and SF recommended arimidex as they felt it had fewer side effects. So far I've found that to be true. I was just a bit older than you the first time this happened 25 yrs ago, and chemo put me into instant menopause. I was Triple negative then do no hormones. Then. My mo did an estrogen test on me before starting Arimidex and yes there was. Nothing coming from my ovaries but Estrogen. Is also made in all sorts of places stored as as estrone and released as estriadol aka estrogen. ( the bad stuff)
Most of that happens in belly fat, but I don't seem to be doing that either she said since I'vd been functioning on such low hormones for the last 25 yrs I probably wouldn't notice much change on arimidex, which so far has proved to be correct fingers crossed it stays the san
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Steph,
Both my MOs in LA and SF recommended arimidex as they felt it had fewer side effects. So far I've found that to be true. I was just a bit older than you the first time this happened 25 yrs ago, and chemo put me into instant menopause. I was Triple negative then do no hormones. Then. My mo did an estrogen test on me before starting Arimidex and yes there was. Nothing coming from my ovaries but Estrogen. Is also made in all sorts of places stored as as estrone and released as estriadol aka estrogen. ( the bad stuff)
Most of that happens in belly fat, but I don't seem to be doing that either she said since I'vd been functioning on such low hormones for the last 25 yrs I probably wouldn't notice much change on arimidex, which so far has proved to be correct fingers crossed it stays the same
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Ok have no idea why all that came out underlined!
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Steph, I get Zoladex shots every 28 days. I decided that there was no way I could do them for another 7-10 years so I'm getting my ovaries and tubes removed Sept/Oct. I'm older than you so it makes my decision a little easier. Just make sure you do lots of research. I'm currently on Anastrozole (generic Arimidex). My side effects so far have been a little stiffness and occasional hot flashes. I do experience a little vaginal dryness but that is probably a combination of OS and Anastrozole. AstroGlide has been good for that (thanks Lago!).
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I just had my first TCHP infusion on June 3rd and today is the first day I actually feel like myself again! I wish my MO or the nurses would have explained that I was receiving loading doses of some of the agents that would cause wicked side effects and that they would be reducing the dose going forward. I started with diarrhea on day three and by day 6 I was running a fever and was dehydrated. I went to the ER on day 7 with a temp of 101 and was found to have a white count of 1 and I was severely dehydrated and my potassium was low. I was admitted for three days and had IV Levaquin and Vancomycin. Turns out I developed shingles which did not help! I was on IV hydration for the diarrhea the entire time I was hospitalized and the diarrhea only relented yesterday. I can only eat toast, rice, applesauce and tea.
I guess I got the worst part over with first, since the next doses of the Herceptin and Perjeta will be lower. I don't know if they lower the Taxotere or Carboplatin though. My white count is back to normal and my platelets are 144, which I guess is high enough to have my next infusion on wednesday. I have had some really bad days, especially since a month ago I was perfectly healthy and my cancer was found on routine mammogram. Everyone keeps telling me that TCHP is cutting edge and that my doctors at Mayo are the best of the best, but they are not that great on communiction. They gave me a whole folder of handouts on the drugs and breast cancer in general and did warn me that the side effects hit on day 3-5, but I was not at all prepared for what happened.
Please tell me that this gets easier....I am trying to be brave and keep a good outlook, but I am also a bit overwhelmed.
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Welcome creativevintage and sorry you now belong to the club. I hope you find time to peruse the boards and mark your favoirites.
Hydrate, hydrate, hydrate seems to have kept the side effects to a minimum. To keep the electrolyes in balance I do something like Figi water or Powerade zero as one of my liters of 3 daily. I ended up in the ER on day 6 with palpitations, tachycardia and high blood sugar along with sodium being low. But a liter of saline normalized things. I am now limiting the caffeine and sugar due to the steroids. The H infusion was slowed down some due to pounding heart. The TC will continue at the same dose and it may be reduced based on blood work and is also weight based. The H was a loading dose as you found out and should be lowered for the remainder of the doses given with TC but to finish out the year will be increased. The P someone else will have to fill in.
So sorry the commuication is lacking but your infusion nurses are a wealth of information, but at the start it is hard to know what questions to ask let alone sift through all the papers. May I suggest you type in search starting chemo and what to expect or what topic you have the desire to know more about. And continue like you have and ask questions here the folks are a wealth of knowledge and experience. My issues were with constipation. For diarrhea your MO should have suggested Immodium (loperamide) adding a probiotic will help replace the good bacteria in the gut that was wiped ou by the chemo and antibiotic.… sounds like you my have had c-diff.
On your profile under the targeted therapy you can add the Herceptin and Perjeta.
I am doing TC every 3 weeks x 6 and H every week for 18 wks then every 3 wks at the higher dose for the remainder of the 52 weeks. Try to stay away from Dr. Google. BCO is a font of knowledge. Visiting some of the chemo boards that start a month or two prior can give you an idea of what is to come in regards to s/e. There are june, may, april/may 2015 boards which can be found under active topics or search.
It does get better… .
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get several opinions, sounds like right course, watch soy products they are estrogen based, anything that could produce estrogen, body mass needs to be lean, my breast surgeon, female, says your body can make hormones at will, so keep that in mind, whatever kills hercepton the best go with, just keep an eye out for side effects, hopefully none ever.
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Creativevintage-
We just wanted to welcome you to our community here at BCO! We're sorry for the circumstances that bring you here, but we're very glad you've found us, and hope you find the support and encouragement you need, when you need it most!
You'll get lots of feedback and support here on the boards, but if you ever need assistance in any way, please don't hesitate to reach out to us. We'll be thinking of you!
The Mods
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Creativevintage Sometimes they do give you too much. Chemo is given based on skin area calculated by height and weight. It's not always 100% accurate. They should reduce you a little bit. There are other things like giving you weekly Taxol instead that may not be as hard on your body. If this continues to be an issue with the taxanes (taxotere or taxol) they will switch you to another chemo. I do think reducing your dose should make a huge difference. Discuss all of this with your oncologist.
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minivan - it's probably the TCH. That's exactly how I felt after chemo. I couldn't walk from one room to another without extreme weakness in my legs and debilitating fatigue. I tried a few things, but nothing really helped but time. It was 8 to 10 weeks post chemo before I really began feeling better. ((((Hugs)))) to you, I know how hard it is.
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The muscle fatigue is most likely a function of low hemoglobin. The further out you get from chemo the higher your hemoglobin should go, until it resumes a normal level. Hemoglobin is what oxygenates your muscles - so low Hgb = tired muscles. I would encourage you to eat protein and iron rich foods to try to increase RBC production and increased Hgb.
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I heard that its the T that causes the leg aches - I had them terribly. I can remember walking with my son one day 6 months after chemo just praying that I could keep walking with him and that he would not notice how much pain I was in and how scared I was. I am over 5 years out from that but my blood work never fully recovered. I stay on the low side, but I do not have the leg pain any longer!! Woohooo!! So know that it is a healing process, and you will get better.
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I'm glad to know I'm not the only one with wonky blood counts. My WBCs steadily declined after chemo, to finally settle in on the low end of "normal." MO said I was anemic after chemo, so I took iron, then had to have two iron infusions, was low, but "normal" for a bit, but then was anemic again last week, plus my B12 was so low he said it barely registered on the test. My B12 had been tested at 6 month intervals, varying only slightly, and always in the normal range. Anybody have any ideas as to why it might have suddenly fallen off a cliff?
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I met with my MO prior to chemo today. He was very concerned about the severity of the side effects and ther duration. He feels the chemo brought on a return of the it's I had as a young adult. He prescribed new meds to help with that. He also halved the herceptin and perjeta and reduced the taxotere and the carboplatin to 75% of the standard dose. He cannot palpate either tumor, just some fibrous tissue where they were located. Yippee! I put some weight back on and in all lost only 3 pounds. He has also scheduled labs in one week to see how low my white count goes with the new dose. He did recommend the ice chips when trying the taxotere and carbo and it helped so far. Because of all the premed I sleep through the whole thing. They are going to reduce the Benadryl next time because I had restless legs and it was very annoying. I will be going back tomorrow for my neulasta and extra I've fluids to conteract any dehydration. All in all iwas much happier this time. So ar they are leaving my schedule for four I fusions and will add the final two after my next echo. My initial ejection fraction was 71
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Keep in mind that when you look at the values for a lab test they are actually for an adult male. Women generally test out on the low end of the value even when things are normal.
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I lived on sugar free jolly ranchers. They really get you saliva glands going.
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I was just so surprised that all my blood counts returned to pre treatment levels and some were actually better! I do not have that burnt tongue sensation today, which I experienced last time by the I had returned home from chemo. I know I will feel crummy tomorrow, but I will definitely enjoy my free day today! I have the physical therapist coming today to work on building my strength and stamina destroyed by all the chemo and bad side effects from last I infusion, plus the hospitalization and being stuck in bed for most 14 days! Next round I will figure out a way to ice my fingers and toes to prevent any problems with my nails. They reduced my steroid dose too, because of insomnia and I will ask them to
Back off the Ativan/ benedryl pre chemo cocktail a bit to reduce the restless legs and sleepiness. I am dizzy and uncoordinated from it and I have found that I have to urinate a lot during the session from all the saline they use to administer the drugs.. I don't feel comfortable lugging around an I've pole when I am so off balance!
I felt just a tinge of nausea when I woke up this morning, but took my zofran right away with my morning tea. I am also going to look for psyllium capsules at the drugstore today as I have been reading that taking them can help with both the constipation and diarrhea caused by chemo. Then it's off for my nebulas to and some extra fluids. I was a bit concerned that my blood sugar was 261 yesterday, as I am not diabetic, but the doctor explained that the steroids can cause that and a rise in blood pressure, hence the dose reduction.
This forum is a godsend!
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