August 2010...anyone starting chemo besides me?!
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I wonder where i stand on the whole AI- i read that they try not to do that on women not near menopause age- if i do tamox for 5 years i'll be 33 when done...
Had my herceptin/zometa infustion today. WHAT a difference! I am not sleepy at all.
Oh and have an appointment with the PS for next thursday the 20th! So i am happy to have a date set up! Then see the onco on the 24th! Things are moving forward!
Oh and I signed up for the Susan G Komen 2011 walk for a cure in AZ (nov) so i am gonna go visist with some friends, walk 60 miles for a cure and visist some more! I am gonna try to get my friends to join me inwalking as well!
Rachel- Glad to see the 1st one when without a hitch
Lizzy- I def will be in the AA club as well! TE just arent for me and recon.... Are you feeling better though?
Lady- Looks like a lot of y'all were just dumped on by snow! Did you at least get another appointment scheduled?
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Cal: Sending big hugs your way. Did they say when you should find out?
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Cal--Sending you big hugs and hope you get your results soon. As we know, waiting is the worst--when your mind starts travelling to all sorts of places.
Lizzie--Strange, your story about Canadian healthcare. I haven't come across anyone who has waited for any sort of Cancer treatment. I was about 2 weeks from diagnosis to surgery and that was more because of holiday inbetween. I think that you mentioned the person was in Quebec--unless there was some weird wait time problem and that is why they went across to Maine? Strange. The main problem here is waiting times at emergency rooms--not sure what it is like in the US but it can be really bad here. I was raised in England--which has similar healthcare system and they have same problems with emergency rooms etc but they also have dual system now--we don't really have that here (private and public)--there are some private clinics sprouting up esp. for people who want MRI's etc. For example: a friend of mine wanted an MRI on her knee because it was sore but the Doc said she would wait because it was prioritized--she went to private clinic and paid (nothing was wrong ultimately). Believe me, our system is not without its problems but I'm guessing no system isn't.
I will let you know how my "healing journey" group is--I did attend a breast cancer support group and it was good and I still keep in touch with a few people. We had one person who was really sad all the time but she stopped coming. The healing journey program is pretty popular--you can look it up on net--I'm looking forward to getting some solutions to help with waiting, worrying etc.
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Cal- hate hearing that, do you have an anti anxiety medication? Its easier said then done to relax, we're all here for you.
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ladies- doctor just called. it is apparently soft tissue, which is not good.
she is going to try to get me into the breast surgeon early tomorrow instead of late - for a biopsy, etc.there is def. something there. I can't even think straight. If it is cancer, it will mean restaging, more full body scans and more chemo and rads.
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Sorry that it wasn't unequivocally nothing Calam....hopefully the biopsy reveals it to be benign. Just remember many people have biopsies, most of which are benign. I will be saying an extra couple of prayers for you!!
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Great news on the surgery appt Texas!!! We have one of those walks here. It is a 2-day walk...something like 30 miles or so. I did the "Walk for a Cure" two weeks after finishing chemo but it was only 4 miles. Don't know if I could make 60 miles, good luck!
Question for everyone, totally non-cancer related... Does anyone have Wii Fit and is it any good? I have been trying to up the exercise and lose some more weight. I was walking all through chemo but now with all the snow and cold weather, I really can't walk. I was thinking of joining a gym but it is so expensive I can't really afford it. So, I was thinking about getting Wii Fit just to get me through with exercise until the Spring when I can walk again. We already have a Wii, so it won't be too expensive. Anyone have any opinions on whether it is worth it or not?
Thanks,
Debbi
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sptmm - Wii fit is great - love the skiing! Good yoga, strength and some running. Its fun!0
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Cal - My thoughts are you with in hoping that it is nothing!0
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CALAM Try to breathe. We are all sending positives your way. Think that with all of the chemicals you have in your bod...nothing bad could grow.
BAMA Sadly I missed my post lumpectomy check up with dr. cute today due to the snow. In NC we pretty much shut down the city. I couldn't even get throug on the phone to see if they were open or not.
DRAINS You know I read up severely on drain ickiness before my lumpectomy. The nurse that discharged me told me not to worry about pinching and clearing the tube. By Saturday I thought I was "MS. Fly" and would be getting rid of this bad boy soon as it was not producing. No because of not clearing the tube it was clogged and dripping out of my side. Pinched/cleared several times and all is well. Since I am snowbound, made a little pouch to hide Mr. Happy Drain in. If any of you are going to need the drain again let me know if you want the web address for the pattern. I made a belt from a cut down recycled Necktie (funky color) and two d rings. Since its silk it is very soft and nonirritating around my waist. The pouch slides on like a little purse so it can be washed if needed. I like not having it pinned on my clothes. Libray lil
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Cal: Saying a prayer for you that it turns out to be nothing serious.
My onc called me about an hour ago. Bless his heart, apparently he is calling everyone he had an appt with today. We went over how it's been going for me and what we need to decide on for the future in our next appt, which he asked "is it ok to put it off for 2 weeks?" I told him fine and asked if I can go ahead and get with my PS and start planning recon. He said yes, hooray! He also said something interesting, which I'll have to research before I see him. He said we'd talk about possibly taking out my ovaries and using an AI. He's not sold on tamox for me because I have a heart stent. I asked if I had my ovaries out, would I still have to do a medication? But he didn't really answer me, just said we'd discuss it at my next appointment. Any of ya'lll know anything about this as an option? Rachel, you've had your ovaries out, right?
In a little over an hour, my beloved Auburn Tigers will be playing for a National Championship for the first time in my lifetime (college football for those who don't know). I am sooooooooo excited!! JSW, girl, I want you rooting for us! War Eagle everybody!
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Cal - I am hoping that you get only good news tomorrow!
I am doing the ultimate in multi-tasking as I am having a complete hysterectomy tomorrow plus my BS is taking out my gallbladder and port!! Today I had to do a bowel cleanse and am on clear liquids. I am HUNGRY and never noticed before how much people on TV eat! Even though things still don't taste quite right I could go for a slice of pizza right about now! At least with chemo I could eat - well except for about 2 weeks after taxotere when things tasted lousy..... I am hoping for a minimum of pain as both surgeries are laproscopy.
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Lady--Yep, I've had my ovaries out and as I am strongly ER+ and your body still produces about 10% Estrogen through fatty glands (of which I am sure that I have a few!), they still wanted me on hormone therapy. The doc prescribed Tamoxifen because of my age--below 40 at diagnosis---he said that Tamoxifen will help with my bones and I believe that the AI's are more apt to cause osteoporosis. He mentioned Tamoxifen for now and then perhaps in a couple of years to move me to something else. I don't know anything about the AI medicines but am guessing will have to learn about it in a couple of years. Someone from my bc support group was on them and had a hard time with bone/joint pain but not sure if that is more personal reaction than everyone.
Cal--Hoping for the best results for you. Remember--over 80% of lumps are benign (I remember someone telling me that). Easier said than done but hang in there....thinking of you for sure!
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thank you ladies. I'm so scared. But in looking back at the whole scope - the port placement, the mastectomy, even the chemo-- THIS is worse. THIS is the worst part of it- the finding, waiting and not knowing and then being hit with news you did not expect. News is worse than cancer!
Please pray for me if you're a praying person! And for my children. And my husband, and parents. I feel like I'm a tremendous burden to them emotionally! Tonight right after the doctor called, my 14 yr old received a call and was laid off from her Wednesday Bible study babysitting job. That was $20 a week she was making. This truly is a *@&*$*%)(% day for sure.Texas -- I just saw something on the stage IV board that made me think of you. A lady with mets to the lungs, sternum and ribs - she has been stage IV for 10 years and is doing great -everything's been stable for her.
I know for ME that really inspired me. 0 -
Cal--Definitely praying for you and your family. The waiting is really the worst. I remember when I had my bone scan and the tech said something to someone else about my scan while I was laying there--I was terrified that something was wrong and even when I left a frantic call for my MO later that day and they said everything looked "fine"--I wouldn't rest until he showed me the damn scan on the screen himself. Your mind can drive you crazy through this. I know it is hard but stay off the Stage IV board----it will make you jump to conclusions for any ache or pain you have--wait to hear from the Doc. Sending you hugs.
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Cal: I'm saying lots of prayers for you.
Debbi: I'm not fond of the Wii Fit for exercise, but I may be in the minority. It is definitely fun though and since you can't do the gym/outside, I'd say go for it!
Lil: I can't believe that nurse told you not to clear out the drain tubes!
Lady: I'm glad to hear you can get started w/planning recon. Have you decided what you are doing?
Zenith: I hope all goes well tomorrow! I'll be thinking of you.
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cal so sorry that you have to go through this. I will pray for you and your family that you get benign results soon.
Carolyn
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Good evening troops! This is a war after all!
Calamtykel: my stomach is in knots for you. I can't believe what you are going through and the waiting again. That is the whole theme to this process: waiting. I feel for you. We are all getting to the point on this journey where the bumps are all going to be investigated and I am sure most of us, at some point or another, are going to find themselves in the position you are in now. I feel for you, I really do. Well, just remember, they are going to be more aggressive with us relative to biopsying everything they find. I feel for you.
Texas: Yes, I am finally feeling better, a bit more energetic, no more shortness of breath and today I was actually going to get on the treadmill. Of course, I am feeling better now and will have to be immersed back into chemo again at some point soon. That really sucks. Today, for the first time in a long time I feel closest to what I did before chemo started, albeit still a little tired.
I am glad to hear you are feeling good and that you have some appts set up. I wish you the best. It is always nice to get things moving forward.
Good for you on the Komen walk. I am considering signing up for a big walk in New Haven in May. It is at a waterfront park. I just want to know I am finished with chemo and will be up for the walk.
Rachel: there was something about that story today, from the VNA person, that just did not ring true. That is why I asked you. I think it was an illustrious story designed to showcase the Canadian system in an unfavorable light. I was talking about this wound management I am doing at home and she brought up how the Canadian system is not great. All I know is those of you with cancer are having as good a time of it, or better, than those of us in the US. No system is without flaws but I certainly think Canada is doing pretty well by it's people...as far as I can tell anyway.
I will look up the healing journey. It sounds like a group that would attract those wanting to help themselves so perhaps there will be a different vibe than a support group might garner.
As for our bodies still producing estrogen through fatty glands, unbelievable! Can we possibly get away from this?! Gross!
Sptmm: I used Wii Fit at my friend's house and I liked it. I don't have it myself because I have to control myself when it comes to buying "stuff!" I am going to use it a few more times and if I like it, I will get it. I make myself revisit the idea 3xs when it comes to buying tech and, if after the third time I am still into the idea, I will then get it! Actually now I am onto Xbox Connect....this is why I make myself wait!
Libraylil: Be very careful with the drains. That is why I have this miserable infection today. I broke the fall of a small, frail, elderly woman who was walking into a store in front of me and started to fall because of the cracked sidewalk pavement. In any case, I only held her for about 25 seconds before a big guy came running over to assist but, during that experience, somehow one of the drains was incapacitated. Later that night I woke up with fluid having leaked out on my bed and I was in a panic. I tried to put the drain back in which is undoubtedly where the infection began. In any case, 6 months later, 1 TE down and having spent NYE getting surgery and in the hospital, I remind you to be careful! Also Liberator Fashions has several camisoles with built-in drain pouches and they are actually attached with Velcro to a band inside. Most insurance companies pay for the camis. You might want to check them out.
Ladyinbama: congratulations on getting the go-ahead for planning recon! Another step forward....so nice. I hope the Auburn Tigers are winning!
Zenith: you are EMPTYING your container tomorrow! Gadzooks....gallbladder, full hysterectomy and port-removal in 1 day?! That is an awful lot. There will be lots of celebratory pizza in your future! I will be sending good vibes, big hugs and wishes for a quick and easy surgery your way. May you feel good enough to jog home from the hospital!
Well, the Northeast is getting a N'oreaster = another foot of snow starting late tomorrow
I will spend time tomorrow night planning my relocation to a warmer climate...Brazil perhaps seeing as even Florida has gotten snow this year!0 -
thanks all. I was definitely knocked off my feet and got the wind knocked out of me. But I've got my (shakey) feet back on the ground now and I'm ready to move forward with whatever it means. If it means more treatments and more chemo and then rads, then so be it. If it means more scans and the agony (and worry for the radiation!) then so be it.
Meanwhile - wii fit (plus) - I love it! I've been running for a half hour a day again, in the snow and then I come in and do an 18 minute routine on wii fit. The only thing is, that I haven't found it to be really great for aerobics. I mean, you can do running on it - run in place, but you won't get the workout that you would doing an aerobics video like RIchard Simmons or something. Lots of balance exercises- -I do the yoga and strength training --you can customize your routine - adding exercises, etc., and that way you just do one after another and you can come back to the same routine every day.
I got our balance board and Wii Fit plus on a lightening deal on amazon for only $67 w/free shipping. I don't think it's that cheap anymore -but they still run sales on them! Be sure to get wii fit plus, as it's actually cheaper and the newer version!
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Dear All,
I mentioned before that I used the Penguin Cold Caps to keep my hair during chemo. The Washington Post has written a story about the cold caps and chemo (and me). The story will appear in tomorrow's Post (on Tuesday, Jan 11) but it's available on-line now. I'd seen the written story before (a friend wrote it), but not the video, so I was mighty nervous to watch the video, but I think it's excellent too.
Here's the link to the story and video:
http://www.washingtonpost.com/wp-dyn/content/article/2011/01/10/AR2011011006036.html
Please do let people know that, in many, many cases, it is possible to safely keep one's hair during chemo. Keeping my hair has made my cancer journey more tolerable than it would otherwise have been. I wish you all -- and me too -- good luck, resilience, and good health during this tough and continuing journey.
Thanks and best wishes,
Katherine
PS. By the way, I was chewing ice during chemo too -- to prevent mouth sores and other side-effects to my mouth. That's why my voice sounds funny when I was speaking on video during chemo.)
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Has anyone heard from Wherria?0
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Lizzy, thanks for the drain tips. Aren't they lovely little accessories? I'm being very careful. My little craft project seems to be really comfortable and since the little envelope is moveable I can slide it to the front, side , etc.
Rachel I tell my Dr./Nurses all the time that "C patients are very suspicious". Pretty much anything they ask me I want to know why and is something wrong.
Calamytykel I'm thinking bout you. You know with all the surgeries/port placement etc. maybe this is just some tissue that is saying "I'm pi$$ed off". Just a plain old knot.... However, I know you won't feel relaxed until you get the official word. As the old people from out in the country used to say "Its probably just a pone". Which means a thing. Or a place. Not C. libray lil
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Joykk-that is awesome! I asked my onc. about cold cap prior to chemo and she totally blew me off, I just figured we must not have been available in my area, IDK why she would not make sure we could use something like this, being a woman herself you'd think she would have a lot more compassion in this area. This lady onc. has 300 bc patients. Kind of frustrating.
I had to stay home from work today. I think I have pink eye. Going to to Dr. in 15 min.
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Cal Big hugs to you. I hope you are off getting your biopsy right now and hopefully they will have results quickly. I can't imagine that more cancer could have grown during the chemo so I am hopeful that it will turn out to be benign. My thoughts are with you and your family.
Texas That is so awesome that you signed up for the 60 mile walk! My aunt lives in AZ and she did the one there this past fall to commemorate 10 years of BC survivorship. Walking 60 miles sounds miserable to me but I am hoping that this fall I can go visit her and do the shorter Komen walk with her (it is a 5K or something?).
Lady War Eagle! Congrats on the win, I stayed up late to watch the game and then had a hard time getting out of bed this morning! But I had to get my last fix of college football to last me until September!
Wii Fit I actually just did my Wii Fit last night for the first time in ages. It is not an intense workout by any means but I do think it is fun and it gets me moving. Like Cal said you can do running in place and then I also like the step routine and the boxing routine for aerobic exercise. My sister does the EA Sports Active for Wii and she says it is a better workout than the Wii Fit but I haven't tried that one yet. I have the original Wii Fit and I want to get the Plus disc because I think I read that it has a few more games and it also allows you to set up a routine in advance instead of having to stop in between exercises to pick the next one.
Zenith Hope your surgery goes well today!
Lil That drain pocket you made sounds cute and I agree that it is so strange that your nurse told you not to clear the tube. They told me about that multiple times before I left the hospital after my lumpectomy. In the end my tube got blocked in the part that was under my skin so it leaked anyway and there was nothing I could do to fix it. So they took it out after about 7 days and I was fine after that. To me, having the drain in was the worst part, it just made me feel so gross and icky, probably partly because it kept leaking.
I hope everyone in the path of this big storm is doing well! It is cold here but we didn't get much precipitation, just some rain yesterday so overall no big deal. Plus I have my hot flashes to help keep me warm!
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Oh and with regard to workout stuff, Target has a bunch of stuff on sale this week - workout clothes and also some exercise DVDs. You can see their weekly ad online at www.target.com, the first few pages have all of the exercise stuff that is on sale. The Wii Fit Plus is on sale but Amazon.com has a better price on that. I'm thinking about getting a couple of workout DVDs though.
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Calam: Hope everything went well this morning! Sending positive vibes your way and will keep praying!
Libralil: I can so tell you are a teacher, with that crafty little drain pouch you came up with!! Very impressive. I asked the surgeon not to put in a drain unless he absolutely had to and I am very glad he didn't because it sounds gross. I did however develop a seroma, which is still there and bothers me a little, so maybe I would have been better off with the drain.
Zenith: Hope you are feeling okay!
Ladyinbama: Congrats on the victory. I bet you were jumping around the house with that last minute victory!!
Lizzy: Here comes the snow. I have the shovel ready!!
Thanks everyone for the advice on the Wii Fit. I am not an exerciser like so many of you who run religiously. In fact before BC I didn't do any exercise. Like I said I did start walking with chemo because the nurses said it would help with the weakness and the fatigue, and it did. Between working two jobs and my kids each playing multiple sports each, my schedule is pretty insane on a daily basis. Anyway, I am looking to start out easy and work my way up, and Wii Fit sounds like it just might fit the bill. Also it seems convenient since it will be right in the living room so I don't have to go anywhere, just carve out 20 or 30 minutes and turn it on. I will think a little bit more on it, but thanks for the insight.
Debbi
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sptmm - If you do netflix you can also watch instant play features using the wii if you have wireless in your home. It's nice.0
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War Eagle! Auburn won the national championship, woo hoo! Yes, Debbi, I was doing my fair share of jumping and screaming. JSW, I think I watched every single bowl game no matter how bad the teams to get my fill of football until next season.
Recon: I had a BMX with TEs, so my next surgery will be the exchange for implants. I think the only decision I have to make is silicone v saline. I think I remember my PS saying he prefers silicone, but not sure. I need to start on some research before I see him. I also need to start researching AIs and ovary removal surgery. It will be nice when I can quit playing doctor.
Still snowing here. They are saying we should be able to get out on the roads sometime tomorrow. I hope so, I don't do much, but I'm starting to get cabin fever.
Cal, have you heard anything yet?
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Good day troops-
I went to the PS who said the wound looks good and seems to be recovering well. It is going to be a slow process, about 3 months, but we will get there. I totally forgot to ask when I can have my last chemo. I will call tomorrow. Then I had to go to the grocery store with all the "snowbound" fear mongers! Then our new Gov announces, on the 5PM news, that everyone should go get bread and milk!!! Ah..yes...let's add to the pandemonium. I cannot believe he made that announcement. They are already going crazy without his encouragement.
Calamtykel: Any news? Thinking of you.
Wherria: where have you gone?
Zenith: hope your surgery is going well today. Looking forward to hearing good news from you.
JoyKK: I am a believer in the cold caps but because preliminary scans etc... indicated my bc may have spread to my brain/skull, it was not recommended for me to use something that would slow circulation of chemo in my head. They are widely used and many people swear by them. It would have been nice not to lose my hair but alas that train has left the station!
Libraylil: I totally forgot to remark on you being told NOT to clear the drains. It was drilled into me when I left the hospital. I have no idea why they told you not to.
Sptmm: SHOVEL!? I just rolled the snowblower closer to the door of the shed and that is just to do clean up AFTER the plow people come! We are getting hammered this year. I am only across the sound from you. This is unbelievable...they are saying 2'....ugh.
Ladyinbama: Congratulations on the Auburn win! I actually watched a little of the game last night. It was an exciting game at that.
Texas: Hoping you are doing well today. Thinking of you.
Well, I did a lot today so, and I am sure you all guessed it, it is nap time!!!!! Have a good night all-
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Lumpectomy/Rads My surgeon told me after the lumpy that the shape/perkiness of the breast may change after rads. Any of you experienced this?0
