Starting Chemo in Nov. 2011...anyone else?
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Hi everyone. Sorry I've been missing.
Beth, sorry that you're not getting the results you need. I've been thinking about you.
nel - been thinking about you too.
grandma - glad you're doing good
linda - glad your scans were clear!
bahamamom - Hope you've been well
I'm now halfway through the chemo part of the trial. I'm on carboplatin/gemzar. It's easier than last year's Ixempra/Zeloda. Thank heavens! It does cause a lot of nausea though. It also makes me sleep a lot. I am staying in Houston with a girlfriend. She's taking great care of me.
I had CT and PET scans after the second round of chemo. They showed no change to the tumor. To me that means no progression!
My RO who is head of the trial, decided he wants me to finish 6 rounds of chemo before we scan again. I should be finished in mid-December and PET scan is scheduled for January 12. I won't have details of the radiation plan until then. That means that I'll be here until sometime in April. I'm sorta homesick for Nebraska, but I'm happy to trade homesick for a cure!
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I am new here. Really am learning so much from this site! Knowledge surely is power!!
Does anyone know what is the cut-off oncotype number for determinig if chemo is needed or not?
Thanks so much!
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Beth, my heart goes out to you as you continue your treatments. It is so easy to feel alone even in a room full of people, so I am sure your mind really races when you are spending nights by yourself. Hopefully they can get your white counts to stay up so that you can finish the chemo. Take care.
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Phyllis, thanks, I have been good. I am happy to hear from you and that you are having an easier time with the chemo this time. I am babysitting my daughter's 3 month old so she doesn't have to put her in daycare until she gets a little older. She is so precious and easy to take care of, but I leave here at 6:30 every weekday morning and do not get back home until at least 5:30 and often 6:00. So far I am still getting in my 3 days a week at the Y, but I am pretty tired after my long days. I hope the new chemo is doing some big time butt kicking for you. I love your attitude!
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Beechlady, if I remember right it's 17 or under that chemo is not necessary. They will sometimes recommend other treatments though, such as Herceptin, aromatase inhibitors, and radiation.
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Phyllis, I hope this chemo will not only keep you stable, but shrink those tumors. But stable is good. It's so nice of your friend to take care of you, while going through this. I'm glad you're not alone this time.
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Phyllis, can you update me on your last diagnosis? I'm glad the chemo is working. I'm sorry you have those side effects. It sounds like you are managing them well. I'm hoping my counts are up so I can get this under control.
I hope everyone is enjoying each day. Three of my friends are coming down for a few days. I'm praying I feel well enough to be with them. We may just all lay in my bed and watch movies and laugh about everything!
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I hope you do that Beth. Sounds like just what you need. Praying that your counts will go up and you feel well enough to enjoy your friends
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Beth,
In bed watching movies, sounds wonderful. Maybe a glass of wine if you feel like it, and some chocolate
Phyllis,
No progression is good news. That is my onc's philosophy! Hope things continue to move forward in a positive way.
Gentle hugs to both of you
Nel
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After lots of research, and one question to my onc that I should have asked long ago, I have skin metastases. I received my third Navelbine treatment and pray it works. My counts would go low and I couldn't get that last treatment. I have neupogen injections that my husband gave me and my counts stayed high. My plan is three weeks on and one week off. I am in pain on the second and third day after treatment but I have meds to take care of that. I also have a uti. Just what I needed on top of everything else!
I hope everyone is doing well. The weather outside looks gloomy and cold but I walked for a bit and it was wonderful!
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bethu - glad to hear from you and that pain can be managed. And a UTI, enough already. Good for you to get out and walk.
Thoughts and prayers coming your way
Nel0 -
Beth, I had wondered about your bumps, and that it was a skin metastasis makes sense. I think sometimes our doctors forget to tell us the little things that they may think are obvious, but if they never tell us, how can we know? I have read that there is a connection between breast and skin cancer.
Phyllis, I hope you are continuing to manage the side effects of your chemo and that you are not too homesick during the holidays coming up while you are away from home.
Nel, how are you doing? Are you having any treatments currently, or are you finished? I can't remember the details, but I know you had, had a recurrence.
I am doing well, just getting ready for the holidays. I can't help remember that my first chemo treatment was the day after Thanksgiving, so this time of year brings back so much to me. Am I just a glutton for punishment, or do any of the rest of you feel like you just have to keep playing the story of your breast cancer journey over in your head all the time? I don't think I obsess over it, but I just feel like I need to remember it, with all the details. I don't know why, it just seems important that I not forget any of it. I try not to talk about it to my family and friends too much because I know they don't want to think of it, but for some very odd reason, it seems to comfort me when I can retell myself the story and refresh my own memory.
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Hi Everyone...Sorry for my long absence, but my husband had knee replacement surgery in October and I have been busy trying to take care of him and work at the same time. I stayed home with him for his first week of recovery, but unfortunately, since I used all of my sick time for BC treatment, I haven't built up a whole lot of hours yet. I do have vacation hours and will use those if I have to, but would like to take some time off for something fun! My DH is doing well and we are now in the physical therapy routine. I know he hates having me drive him everywhere and can't wait to be cleared to drive again...I totally agree...LOL!
To those of you currently in treatment, I will be praying and thinking positive that you will have great results with what your regimen of drugs. I am hoping you will feel great for the holidays. And Bahamamom, yes, I still remember over and over the details of the treatment I had. I wonder if it's to reassure ourselves that we made it through the journey and are indeed, survivors of some very difficult days. I don't obsess over it either, but every once in a while I look at my picture when i was bald and can't believe that it's really me in that picture.
In case my husband keeps me too busy, I want to wish all of you a very Happy Thanksgiving. I feel grateful for every single day and especially for the holidays I get to spend with my family. Take care everyone. Hugs from me to you!
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Hi all, not sure if anyone is still around on our thread, but thought I'd check in. Had my 3 month doctor visit with onco yesterday. My dexa I had a couple weeks earlier showed very little change. I was relieved to know that, since these drugs we're on can cause osteoporosis. I'm still in normal range so I guess I'm doing something right or I'm not having that side effect. Otherwise very uneventful and I'm so glad. I did put 5 pounds back on, so I must do better at my exercise regimen. Been craving sweets lately, too. And it's everywhere. Hope everyone is doing well.
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Hi all, wishing everyone a very merry Christmas. I hope all in our group are enjoying the holidays and those who are in treatment are feeling as good as possible. Grandma, glad to hear that your bones are holding up with the drug therapy. I have had little change in my dexa as well. Hopefully, that will keep up for us.
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Hi Everyone...I want to wish you all a very happy holiday season. I hope that everyone is feeling well and enjoying this time. Let's hope for much health and happiness in 2015. Merry Christmas! Hugs and love...Linda
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Good to hear from folks. Still NED almost a year and a half after spread to my adrenal gland. This makes me very grateful this holiday season. An additional reason to be grateful, I am on a tykerb break for a week or so. So the se's from that are not in evidence this holiday season. I feel like myself! Yipee. The se's are minimal compared to some of what we have all gone thru, but can still become wearing. And with no end, until they stop working and I switch, the break is so much appreciated.
Grandma - glad you are doing well.
Happy holidays to all and a healthy new year
Be well
Nel
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Nel, happy to know you're still NED! Yay! Also that you get a break. I hope tykerb continues to work for you since you have minimal se's on it.
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Happy New Year All--wishing you all much health and happiness in 2015.
Things are fairly good here. Busy and a bit stressful-- in my characteristic style I took on too much all at once. When will I learn? Evidently, never! But we decided to stay in our home-- I just don't have the energy to rebuild another home elsewhere and make new friends and neighbors. Being reasonably close to a hospital is essential and everywhere we looked they were too far away. So in the past few months we painted the outside of the house in Tucson Barrio colors, we meaning my husband somewhat and the royal WE (me) started painting the inside-- I has to take it slowly--like wall by wall--still don't have my mojo totally (tis a new me, I guess). Then we we loved the looks of the outside-- we decided to stay here which took a lot of pressure off of both of us plus we LOVE our home. Then we started thinking of retirement plans for hubby and I want to partially retire now...lol... so THEN, we inquired about a small remodel.... see where things are going??? lol.. and next week we are demolishing a few walls and rebuilding. Meanwhile, I have been training to do endurance competitions and in 3 weeks I do 50 miles (yes one day).... I feel physically weak but my 19 year old assures me that if ONLY I would do planks, in just one week I would be stronger--easy to say for a 19 year old!! I need more time ... so now I am seriously considering letting go of one of my jobs-- a job that i have loved but am not enjoying it as much lately---and go out completely on my own. My confidence in being a success is increasing so that is certainly a possibility...
well, enough to bore you all but that is my 2015 story and I am sticking to it!!! LOL
Happy New Year!! Q
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Somgood to hear things are well with you Q.
I am switching to carboplatin/taxol on Tuesday. Hair will be gone again. Maybe this time, I'll get some curl! I'm also going to see about a 2nd opinion. Can't hurt right? How many of you had 2nd opinions?
My youngest daughter and her husband spent two weeks with for the holidays. My daughter, her husband and the Babiez will be here a week from Friday. I cannot wait to see them! Seeing them on FaceTime makes my days better.
I hope all of you are well
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Happy New Year to all of my November 2011 buddies!
Quaatsi ~ It's great to hear that you are feeling so confident. Maybe a (very) hidden blessing of this whole mess is that we let go of things that had been holding us back. I find that things at work, as well as at home, don't bug me nearly as much as they did before, and I am grateful for the fact that I can keep myself so much less stressed out. You have certainly gotten yourself into a project with your house, but it's fantastic that you and your husband both realize that you want to be there. Love that "small remodel" thing...that never happens, but I am sure the outcome will be wonderful. I have a close friend who is thinking of moving to Texas to be near her daughter (she has 3 other kids here in California), but she is having the struggle of leaving everything that she loves and is familiar with and not having to basically start over in a new place. As I am getting even older, I think I would have a hard time moving somewhere new as well. Holey moley on that 50 mile endurance event. I think I could make it if the distance were .50!
Beth ~ Sorry that you will have to lose your hair again to those crazy chemo drugs. I guess you at least know what to expect, not that it makes it any better, but it won't be as much of a shock this time. At least I hope not. Glad that you will be seeing the Babiez soon...I know you will enjoy them tremendously. To answer your question, no I have not gotten a second opinion, but I did feel better knowing that I was getting the "standard of care." If I had to deal with what you are again, I would seek out a second opinion, even though I would have to pay for it myself. I hope you have few side effects with the drugs this time. I will be keeping you in my prayers each day.
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Hi All, well, remodel done and last week was my last week at my job so I am semi-retired!! Nice, right? the very first day of semi-retirement.. I have plans...had plans to go camping more... I got a call from my Onc.... tumor marker slightly elevated. Petscan and MRI later.... all in my first so called free week... they found something on my vertebrae (T9). am awaiting full diagnosis but it looks like bone metastasis ...
I don't have enough information yet so lots going through my head about what I want to do. So this morning I am getting on my favorite love bucket and ride....
Q
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Hi, all. I am doing well physically. My mother is in the hospital with congestive heart failure and renal failure, not expected to recover, so emotionally is a different story.
Q-so sorry for your news about your back. That news is hard enough when the timing isn't so bad. Please keep us posted as to diagnosis and treatment. You are so strong! Anyone who can go 50 miles in one day can kick butt!
Beth-how is your treatment going? I hope you are improving and not feeling too bad with the meds. On the second opinion, I think we would all probably know do much more now that we have been through initial diagnoses, treatments, etc,, but at the time, it was do overwhelming going to all the doctors and hearing all they had to say. I couldn't have imagined wanting to know more then.
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Quaatsi ~ I am so sad to hear that you may have metastasis. How was it determined that your vertabrea is involved? Did you have a bone scan? My tumor markers were high last August and a PET scan was done and was clear. My MO has ordered more blood tests for me to check it out again and I am so nervous about it. He said if they are still high (they were slightly elevated last August), he would order a CAT scan and a bone scan. Hate this for all of us so very much. I understand how unsettled you must feel at this point. I hope you can still get in some camping and riding so you will have diversions that give you some sort of relaxation. I am sending positive thoughts your way.
Bahamamom ~ So sorry to hear that your mom isn't doing well. Having been through that situation, I know how hard it is to accept. I wish you strength as you deal with this situation.
I hope that some of our other friends will be visiting us soon. Take care and know that I think about all of you so often and i am thankful that there is a place to share our feelings and situations. xo
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Well diagnosis confirmed today. Bone metastasis-- lesion in T9. Will find out Tuesday options. No cure but management possible. I am trying to stay centered. Quality of life is the key!
Not afraid to die just not ready -- I just retired and the next day this happens.
Take care all... I am in shock still so I am not being terribly coherent...sorry. Q
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Quaatsi - I am so sorry to hear of the spread. You will be in shock for awhile. Like the intital dx, you will be in shock for a bit, but then once you have a plan and are moving toward that - things will even out. You are no where near dying. There are MANY of us here living with stage 4. I was dx in Aug 2013 with a spread and have been back in treatment. I have taken a few trips with my kids, work, live my live - albeit a bit more slowly. Keeps us posted and know you are in my thoughts.
Bethu -how is your treatment going? Second opinion? and how was the visit from the babes
Bahamama - thinking of you. An aging parent is so difficult. You are in my thoughts as well
And everyone else??
Nel
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Quaats ~ I am so very sad to hear of your metastasis. Cancer sucks and it doesn't fight fairly. I can only imagine how much of a shock it must be to get a stage IV diagnosis. I am sure that Nel and others will be a huge help to you. I will be thinking positive thoughts for you as you move forward. I wish I had something profound to say that would comfort you, and I know how you feel about not being ready to die. Hopefully, the treatment plan you will follow will keep things at bay and allow you to live in a way that will give you satisfaction. I was happy to read that Nel has been able to deal with the shock and I hope that you, like she, will be able to have a good quality of life as you move forward.
Nel ~ I am amazed at how positive you are in dealing with another detour in your journey. I am having blood tests to recheck my tumor markers as they were slightly elevated. A PET scan was done and it didn't show progression, but in many ways I feel like a ticking time bomb and HATE having to find out what's going on now. Did I say that I think cancer sucks? I hate what it puts us through.
Beth & Grandma ~ Hope you are doing well and will be in touch soon. I think of our November 2011 group often and am sending hugs your way.
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Hi everyone - sorry I've been missing.
miss Q, so sorry that this stupid disease is back on your plate.
grandma V, linny, bahamamom, nel - I hope your'e all doing well
Beth, how are you feeling?
I finished carboplatin/gemzar on Dec 16. The tumor in my sternum never did shrink. I had my 10th of 35 rads today so I'm getting closer. RO still says he will cure me with this treatment. He better!
Phyllis
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linnyhopp, Yes cancer sucks and I have the bracelet that I wear every day.I am positive (most days) but it has been a year and half. My initial treatment continues to work and I continue with NED. Aug of 2013 I was NOT positive, much crying and sadness. I have se's I deal with and am working on a plan with my onc for treatment breaks,so it id far easier for me to be positive. That being said I can have bad days and bad weeks. It SUCKS!!!!!!! I live partially in denial and partially in reality. Friends and family do not fully grasp, but I am finding networks that do. I cherish the great moments with my kids and the challenging ones as well. I hope they are able to take these memories on their journey when I am no longer here.As my onc has told me , I am not dying in the near future,but value every day it could all change tomorrow.
For all along this journey = be well
Nel
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Nel - " I live partially in denial and partially in reality" explains it perfectly. I'm so glad that you are still NED
Phyllis
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