Chemo starting in December 2010
Comments
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guess what all? i got my genetic testing back today.... it's NEGATIVE!!! woop woop!!!!!
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That is great news hdangelbaby!!!!! I will find out mine the end of the month.
Round 2 of chemo tomorrow morning. Praying for the snow not to be too bad on Friday because I have to go back down to Hartford for my neulasta shot.
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lindaa: I am looking into being able to get the shot at home. The shot with NO insurance is $8000!!!! CRAZY!!!!! I am hoping my insurance will cover it if I get it at home. Especially with snow coming on Friday when I have to travel 45min to get the shot!!!
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Hello all you beautiful ladies, Just checking in.
hdangelbaby: awesome so glad to here about your test. I meet with the genetic counselor tomorrow after my chemo hope mine comes back the same way. Hoping my insurance pays for most of it. All these different things really add up.
You are all in my prayers and I too cannot wait for Sweet Sweet Summer, when I will be done with all these treatments.
Hugs and Prayers ~Leslie
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Hello everyone,
I don't post very often but do enjoy reading the posts very much. They are informative, and I thank you all for them!
My second TC is tomorrow as well, so I'm in prep mode. I saw the onc today and mentioned a side effect (or two) that I thought I'd pass on. I'm taking Zofran and Compazine as anti-nausea meds. On about day 4, I developed uncontrollable spasms in my mouth, alernating between a weird smile that I couldn't control (kids said I looked like the Joker) and something like sucking on a lemon. I couldn't find anyone talking about that, and the onc said it's a side effect of the Compazine, so I'm cutting back on or eliminating that.
On day 13 I got my shoulder-length hair cut fairly short - longer than a pixie, but the shortest I've had it. I didn't start shedding until day 15. The hairs down below shed first, so I cleaned up the margins (if you know what I mean) but didn't shave it all, and the shedding seems to have stopped there. On the head, I get periods of soreness and my comb, when I do comb it (try to spray and leave alone the rest of the day) I get many strands but no clumps or bald stops. I didn't shave because I'm wondering if I can get by with lots of thinning. The onc says "don't count on it," but I'm waiting to see and glad I haven't shaved yet. It was a good transition; I'm getting used to seeing myself with less hair and now am not sure that I'll bother with a wig (but like someone said earlier, I'll probaby need a refitting/trim of the wig at some point just in case I go that route).
Other SEs- rash/hives on chest to chin line and some extremities. If I can't control it, I'll have to move from Taxotere to the A-class, so I'm trying to manage it with steriod cream and Benedryl.
I also take the second steroid dose by early afternoon to help with sleep. Apparently Zofran contributes to constipation, so I'll be upping the remedies for that as well.
I hope all of this info/rambling is useful. The Compazine bit seemed new to me, and maybe there's some hope for the hair. I'll let you know. I didn't try the cold caps but rinse with cold water and have started Biotin as a supplement and Nioxin for thinning and regrowth.
Take care all. I'll be thinking of you in the chair tomorrow.
Ami.
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Hi All!
Like many others, I don't post often but do visit the boards and appreciate the tidbits shared! I'm going for my 2nd dose of AC tomorrow. I go every 3 weeks. I'm a little anxious but know everything will be alright!
Well wishes to all!
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ebann - I know what you mean about frustrating. I just did #3 of DD A/C and I think i finally feel a little softening. Things were just starting to get bigger again after all of that taxol and avastin I was on. All that, it did improve a lot then started to progress again. So this is try 2 for me and I'm hoping this one works..
msjag - i go to Dana Farber now. Was at Women and Infants. I'm in high risk dept with Beth Overmoyer and her dept head is Dr Winer. I met him when I was in the hospital as it was his week for rounds. They all consult with each so I know I am in good hands now. I am trip neg with IBC floating between stage IIIC and IV - no organs. Dana says I am still 'locally advanced' because of lymph. W&I made me feel guilty for the lymph and not coming in sooner, but now I now that IBC moves fast and goes straight for the lymph so it is not uncommon to already have it in lymph on dx. I live in RI and it is around 1 1/2 hrs but well worth it. Very kind people who want you to call them by first name.
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Damn, the hot flashes have started. I was wondering if I would get my period, it has not arrived since my first round and last week I felt a lot of pelvic twinges. I think it was my ovaries going to sleep! The hot flashes started a few days ago. I seem to get them at night and in the morning. Will we ever get our sleep back?? I am with you ladies, WHEN IS SUMMER???
My COBRA arrived and is in place now. In the end, I am happy that my ex is now an EX. Now, I do not have to deal with him. Who needs that stress?
The Disney 1/2 marathon is this Saturday, hopefully I am able to finish. I have been drinking tons of water this week. During my last long run I became very dehydrated. I now have to drink 3x the amount of water that I use to due to chemo effects. I am up to almost a gallon a day! I have had major issues with constipation, but this week with the water I have been very regular.
Hair...I buzzed mine after I was able to pull out clumps of it. As of today I still have hair, with lots of little bald spots. At first I was annoyed, I expected it to come out all at once. But every morning I wake up, and there are tiny hairs all over my pillow. I have a feeling it won't all be gone until I am almost done. In the end, I am glad it is gone. I miss it, but I could not deal with long hair every where. I hate wearing my wig. It feels like a torture chamber. I rip it off in the car after leaving work!
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Sunflower I am smiling about your wig and ripping it off in the car! I have had one on and I feel the same way. At a rest stop traveling home from St. Louis I took it off by the trunk of the car, not even caring everyone could see me.(I had worn it constantly for two days being with friends that hadnt seen me in awhile/ let alone without hair) I pulled on a little soft chenille cap and got in to continue my trip-much, better! Mu husband gets a little irritated and scolded me about ripping it off when I get in the door because I bought a wig that cost $100.00. (I should be more careful with it) Smiling.. he should have to wear one!
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Just wondering, is anyone having trouble with their feet? Mine feel like they are burning-the skin around the heels especially.
Today is my bloodwork day and I will ask the nurses I guess. Starting to feel better now after a rough week!
Lindaa-oohh maybe it is the steroids affecting me. I have been very snippy and on and off weepy. I was told the steroids I was being given weren't enough to cause any major changes. hmmm.
Ebann... a bit humbled right now. You are going through this a second time? Oh my. I appreciate your advice. Since the other night my husband has been very helpful to me. I think my son's surgery and the complications have added to my level of frustration and worry.
Wishing everyone a good day today!
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I had my second treatment. Hopefully it will be noneventful! I also found out that I'm HER2 positive (5.0) -- still trying to understand what that means
Hope everyone is doing well.
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does anyone else get an acid like feeling in their throat and esophagus day after neulasta? this is my 3 rd shot and i get it everytime. makes me not want to eat anything.
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Hi everyone:
On my third day of my third AC DD treatment. Relaxing in bed today, tired from some meds to control my heartburn.
Ebann, am I correct in reading 34/36 treatments to go, is that Chemo you are talking about and this is your second chemo round?
Hopefortomorrow, I had the same burning sensation in my feet but it didn't last. It was so bizarre.
Sunflower 71, I had my period still after my first treatment and am not sure if I will get it this time. I don't feel any hotflashes or anything but the onc said this would stop my periods. They are painful so I hope so in one way but not looking forward to hot flashes.
It is pouring rain out where I live so is a great day to be lazy and in bed.
Best wishes to everyone.
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Hope - my big toenail is hurting when I touch it. It doesn't look weird or anything - just hurts, not bad tho.
Not too many mouth sores for me this time tho my lips at the corners keep cracking. Winding down from AC 3 -- AC 4 is next wednesday. Mixed emotions on stopping one and starting another - just when I feel like I can handle these SE's and now I gotta get used to some new ones........ bleh.
Hugs to all.
Lisa
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Hello Ladies - i had my second treatment yesterday at 5pm - i dozed off at 11am and woke up at 1am and have been WIDE AWAKE ever since - i did not get the headache nor stomach issues yet - i hope i have a good day - i guess the reason i am so awake is the steroids right?
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Hi all,
I had round 2 yesterday. Last night I was so so sick. I had the worst nausea with out actually vomiting. After taking a ativan and decadron I felt so much better. We are taking me off the emmend b/c of the cost. My dr and nurse don't like the steroid effects on me either which is why I have to take the ativan 1/2 hr before. It seems to work! Today is better but if I move too much I feel sick so I am laying low until I have to go for my booster. I have been approved to have the booster at home!!!!! Unfortunately it wasn't in time for today's shot so I have to travel for it.
ninap7: Yes the steroids will keep you awake. I hope it settles down for you so you can sleep.
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oh .... day 4... starting to come out of the fog a bit. thank god! I swear for me day 3 is the absolute worst! it's also day after neulasta. but today i woke up inhaling food, well just about! still have a thumping headache but can live with that, as long as the nausea and body aches are gone!!! hope all has a wonderful day, or at least one with minimal SE's!
(((HUGS)))
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Karebear.. just a thought...does your Dr's office have a gal that handles the financial things for patients in the office- as in arranging for bill payment, etc? The reason I ask is that they have totally helped me obtain emmend for less money. I at first was approved and got my first two packets free. I guess they investigated (the patient advocacy group that covered the emmend for me), and found out my insurance can actually get it for me for $23.00, so I do have to pay them back the $23.00 per pack, but originally I was told by my pharmacist $149.00! I would have not known about any of this, except for the fact I went in and asked a question about my insurance and payments. Suddenly help became available I never would have known about, and I expressed concerns about the cost.I did not expect any help because we make a fairly decent income.
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So how many days are most of you on the steriods? I know they gave me some in the drip, then I took them only day two and three.... how long do they stay in your system? Today is day 9 of my two week cycle, and the first day I am not ravenously hungry, my skin is really broken out, and the emotional crash on days 5-7 were not a lot of fun..... after three days of feeling like I could rule the world, spent the next three days miserable and in tears much of the time. Am I the only one having that kind of reaction? I have to think it's the steriods.......
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lisamomoffour, not sure, i get AC right now, and i know i get them in my drip. i don't need them after that. im up and about for a few hours after treatments, but then i kinda crash and burn right there. i know on taxol the steroids are used alot more, so maybe the gals on taxol would know more. i do have them for anti nausea, but the other meds help so i don't need to use them
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It's funny we all get such different protocol. My onc's office is adamant that you can't easily control the nausea once it starts, so it's decadron and zofran twice a day for the 2-3 days following treatment, regardless of symptoms. They give Emend in the drip, but also something that started with an "L", which is supposed to stay in your system for five days. I would have to say, while I'm not crazy about the steroids, I experience no nausea whatsoever, luck of the draw maybe, but I was relieved.
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Hi everyone! I am hanging in there and my side effects have been minimal so far. Slept a lot today. Had steriods with my chemo and was wired last night. So nipap7 yes steriods can do that to you.
hdangelbaby: Yay!! for negative!
Karenbear76: Did your insurance approve the shot?
Ami: How is that rash doing?
lindaa: How did your 2nd try work out for you?
hopefortomorrow: I am glad your husbby has been helpful. It makes a difference. I can see how your son's surgery would cause all kinds of emotions. I would be the same way.
Rachel2: your are correct 33 treatments left now. It was my 2nd chemo treatment was suppose to have 3. Do it every wednesday with one week off. Was not able to complete round 3 cause of my wbc being so low. So they made some changes that I am praying will work out for me.
LisaMomOfFour: Glad you are not experiencing nausea. I have not had the reaction you are having. How is your skin doing? Is it still broke out? Have you spoke to the Dr. about it yet? Wishing you well.
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lisamomoffour, i forgot to tell you, i am also on ovarian suppression shots, and i broke out terribly 2 weeks after my first one, my doc gave me erythromicin topical cream for it. it's better than taking another pill!! and it worked pretty good. also, i have or well, had, oily skin pre chemo, now it's all dry. onc said do not use anything with salycilic acid or peroxide on the face. just makes things for inflamed. i found a wonderful hydrating gel that works miracles for me, and it was less than 10 bucks!
it's garnier , moisture rescue refreshing gel-cream
it's got grapeseed in it. does not make you oily at all, and it's very soothing!
hope that helps!
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Hello all you tough brave ladies....
I am so glad to hear that most everyone is doing well and learning how to deal with the side effects. Had 3rd dose of DD AC yesterday and Neulasta today. Hit the tired wall about 7 last night then up at 11:30 last night for the rest of the night...Yep steroids are a bummer. I totally go through the day 5-7 tears and am fine the rest of the time so I know it has to be the steroids. I get steroids in my drip then take a full tablet for 2 days and a 1/2 tablet the next 2 days.
As far as the Emend I was charged 300.00 the first time I picked it up at the pharmacy. They are giving it to me at my tx's now and I believe it is being charged through my major medical (I hope to heck it does not get rejected)_ I know that they were also trying to get it for free through the drug company also but do not know if that went through.
My husband just piped in and wants me to tell you to go to www.emend.com as there is a link on there to get help with your copay. I have not done it as I think I am handled but it might be an option. Also try Northdrugstore.com out of Canada it looks like the generic that I talked about a few weeks ago has come out and is available for 75.00. I know the patent ran out the end of Decemeber and the generic was supposed to follow the first of the year but sometimes they get postponed. Looks like this one may have gone through. Does anyone know if we stay on the Emend when we start Taxol?
Had an energy boost this afternoon....the steroids no doubt and so continued on my cooking of meals to freeze in preparation for her knee surgery on the 18th. I think I have about 35 meals frozen and ready to microwave. It makes you feel good that even through this we can contribute and help others through their struggles.
Well preparing for the down hill slide that will no doubt hit tomorrow or Sunday. Trying to visualize good right through the whole thing but not quite as big a believer in the universe and visualizing to buy that it will work. But I am trying.
Have a great night and pray that we all sleep!!!
Leiigh
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lawleigh, i asked the exact same question about the emend while on taxol when i was in on tuesday. onc said emend is not given through taxol cause the nausea is not a problem or main side effect from taxol. now this is if your just on the taxol, not the taxol and cytoxan combo.
i went from taking the emend, to getting it in my drip the day of treatment , then following it up with kytril and compazine and ativan at night. it's a bit less expensive this way. docs here say the younger you are the more prone to having aggressive nausea. i think he is right. i usually only get nauseous the night of treatment, but day after neulasta i don't want to eat either. i don't want to say it's nausea exactly, but lack of appetite cause everything hurts is more what i think is going on there!
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Morining all. Does anyone have any issues with their legs feeling so "heavy"? From my knees down, it feels like they weigh a ton. I don't appear to have any fluid retention, they just feel tight. This hasn't happened before this week, having my t 3rd x on thurs.
Also, had my head shaved two weeks ago, and the "stubble" is driving me crazy. Does that fall out soon? Did any of you who shaved your head already, shave it completely bald,or just buzz cut? I'm thinking I may need it completely shaved so it doesn't itch under the wig I wear to work.
Last question of the morning, does anyone juice? I got a juicer for x-mas and was wondering if anyone had any special recipes? I have to ask onc if I can even use it while on chemo, When I first started chemo, she didn't want me eating fresh/raw foods.
Snowy day in MA, but very pretty! Have a good day everyone.
JoAnn
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hdangelbaby -- thanks for the skin care tips.... some of this I'm sure is because of hormonal craziness..... I preempted chemopause all on my own by losing 40 pounds between October and December due to stress, which threw me into menopause entirely. (Found that out when I had an abnormal period, endometrial biopsy and then my GYN ran the menopause panel and lo and behold.... completely IN menopause at 47, no longer perimenopause...).
Oh well, off to the salon in a few minutes.... I expect my hair to start falling out in the next few days, and I'm preempting it and letting the salon do all the cleanup! 5 more days until treatment #2.
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Good Saturday Morning All!
1st chemo was Dec. 30. Thursday and Friday I felt great...even went into work on Friday for 2 hours to finish up month/year end stuff. Saturday thru Wednesday felt queasy/indigestion....Thursday felt great! Only had achy legs on Sat and Sun.
Did you know about Gailafund.org or Franceluxe websites? They will send you free (beautiful) scarves. The ladies at Gaila sent me an amazing note and the softest black velvet headwrap. I also won a PaulaYoung Wig from "breast cancer, but dr I hate pink" Thanks, Ann! No hair loss yet...
Have any of you taken advantage of "cleaning for a reason?" A company that enlists local cleaning services to clean for you during your chemo! What an awesome idea! I don't think there is a service close enough to me, but go to the website and give it a try!
LisaMomofFour...
wow! congrats on the weight loss! I only dropped 5lbs. before surgery, still trying to lose! Doc said my chemo would most likely send me into menopause.
Have a great weekend!
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I'm not proud of the weight loss... it wasn't done through self control, it was done through stress! When I'm mildly stressed out I eat like a pig, lol. I was so stressed out over everything I was going through, well, I had to be reminded to eat every day, and could barely choke down half a cup of soup at lunch.... Now I did need to take off this weight so that's good. But now I will have to watch it as the steroids have re-ignited my appetite.
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Hi ladies.
My shot was APPROVED!!!! I didn't get it in time for yesterday's dose but the next 2 will be delivered to the house so I just have to have a nurse friend come over and give me the shot!! I am so excited to not have to travel 45 each way for a shot!!
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