Starting Chemo in Nov. 2011...anyone else?
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Linda--I struggle because when I hear that someone has been diagnosed, I begin to worry all over again. I get those feelings also and I think this the reason for the depression. A lot of people say we are gone a lot. Well, we are. there are so many festivals going on and the ocean is near. I have highs and lows. I am so thankful to have my husband standing with me.
Phyllis--I may start a support group here. I went to one at a hospital but everyone knew each other and I felt out of place. I have made friends in my exercise classes and in church. I just don't know how much I can trust them.
Bahamamom--I hope to lose the weight like you have. You inspired me to get moving when you talked about joining the Y. Congrats on your retirement. Enjoy each day! We have gone through a lot together!
Hugs, Beth
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Hello everyone, long time no post! 5/22/13 was my 1 yr since my last chemo. Just cking in to say all is good. Finished radiation last year Oct and am under observation every 3-6 months by onc/surgeon. Hope everyone is doing well. Needed to take some time off from here and just enjoy life with friends and family. I never forgot u all though, always in my thoughts and prayers! Bless u all, and hope u all who r mothers had an awesome Mother's Day! I did, my youngest had her First Communion on the day, was so precious and I was so thankful to be here to be part of this special time in her young life!
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So nice to hear from so many that are doing well. I have to tell you, lately I feel great. I'm beginning to feel like myself again. I've lost a few pounds, exercising more and getting stronger every day. My new pcp is helping me. She's arranged for me to come in every month to be weighed and blood pressure check. She gives me ideas on diet and exercise and is a real encouragement. She did research into my supplements I take and had no objection to any of them. My knee is still a little stiff, but has seemed to have healed up well. Some of you may remember yaya5 would post occasionally. She's from Oklahoma City, and let me know she is fine. She had no damage from the tornadoes that struck there last Friday.
Phyllis, I think about you often and hope chemo is not too bad for you.
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GrandmaV - I'm so glad you're feeling good! I remember you had such a hard time in the beginning. I particularly remember the tinnitis was awful.
Thanks for thinking of me! This chemo is awful! The good news is that I think I'm tougher than it is. At least I think that's good news. Hahah. MO has lowered the dose of Xeloda 3 times because my counts keep dropping to the unacceptable level and I had to miss 1 of my 2 weeks of it last round.
Counts were all good today so I had the IXempra and re-started the Xeloda. I am down to 2,000mg in the morning and 1,500 mg in the evening. This stuff better be working!
Even though the SEs are really bad for about 8 days of the 3 week cycle, I think I can make it through the last 3 cycles. Oh sheesh, i'm having one of the nuclear hotflashes as I type. I hope I don't get sweat on your note! I'd better quit bragging about being tough.
Phyllis
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Phyllis, You are tougher than the chemo and that is good news. There won't be any bad cells left over this time. I'm amazed you're keeping your sense of humor and have such a good attitude. I'm not so sure I could do that.
I do still have tinnitis, but I'm getting better at ignoring it. I think the white noise I listen to is helping with that. I don't feel so crazy anymore. Some people have had success with retraining the brain to ignore the sound, which, as I understand it, isn't really a sound. The brain interprets the damage as sound. What I don't understand is why the brain interprets it louder at times than others. Doctors don't really know either. When it gets loud I turn on my "white noise" and turn up the TV.
You're an inspiration to me.
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Phyllis-it's so good to hear from you. I didn't see any sweat on our note so you are good! Keep on laughing when you feel like it. I had to miss one treatment and it was sad because it made the process last longer! I hope your counts go up and stay up!
GrandmaV-it's good to hear from you too. You are always an encouragement to me! I'm sorry to hear about the tinnitis but it's good to hear you are handling it now. I have episodes of vertigo that really stop me until everything gets aligned again.
I don't take the Arimedex any more. My joints were hurting so bad. I dreaded getting out of bed because my feet hurt so much! I keep forgetting to ask my new oncologist about taking it again. I remember when she told me to stop taking it that she called it the "devil" drug and thought I should take it every other day. I don't want to start it again because I feel better now. Some days I am on top of the world and feeling so good that I cry with joy. Other days, I feel down. Can't wait to level out!
Hugs My Friends!
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Beth, thank you. You encourage me, too. I noticed on your diagnoses line it says you're ER-. You may have answered this before, but does Arimidex benefit ER-? I get confused sometimes on all this information we've had to sort through, so I may be wrong, but I think it's usually given for ER+. I do seem to remember, though, someone mentioning that some oncologists think it can benefit ER- too. I don't know, I get confused. I'm on Femara and had really bad joint pain at the six month mark, but at 9 months it began to improve and now I have no joint pain, just some stiffness. I can't wait to get more of this weight off. Sometimes I feel like I'm lugging around lead in the thighs and stomach area.
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I was diagnosed as ER positive the first two times until I got the ONCO type test done. It said I was ER- and then my oncologist said I was borderline. I too get confused and especially when I was first diagnosed. I am finally getting a clear head and need to sit down with my path and test results and get some clear answers. I have a stress test scheduled for Wednesday. I had a CT scan on my thyroid and it showed some nodules. Since I had radiation the first time, and I have thyroid issues, they are keeping a close watch on everything. I have had some jaw pain, nothing scary but my pcp wants to make sure.
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Beth, I'm glad to hear that your pcp is on top of things. The tests and scans do cause anxiety, though. I have my second mammo since treatment scheduled for August. I'm trying not to think about it.
We're all coming up on year 2 already of our diagnosis come this fall. It's hard to believe. All of you were very important to me and still are. I hate to think of trying to go through all of this without you. I hope we continue to give each other updates.
Phyllis, I know you're getting a lot of support on other threads, but you're very important to us, too and are here for you as well. You're probably close to the halfway mark with your chemo by now and I know it's been just awful for you, but you're going to make it. You're handling it amazingly well and I know you will continue to do so.
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GrandmaV, you're so nice! Thank you. Yes, I'm about halfway thru. I have to tell myself everyday that I can do this. It's usually accompanied by swear words, but since I live alone nobody hears me. :-) I have labs later today to see if we continue the Xeloda this week.
Beth, I'm glad they're watching out for you.
Phyllis0 -
Hi ladies. I have an appointment with my onc next week, and I was just thinking that I have lost about 18 pounds since I saw her 4 months ago. I had just started the LIVESTRONG program and hadn't lost but maybe a couple of pounds then. She has never fussed at me about my weight, but I am hoping she will notice. I still would like to lose 30 more pounds, but I am content letting them slowly come off (for now). I really have tried to change my eating habits for the better, and I am using this app called fitness pal. It keeps up with my daily calories and even weekly calories, so it I go over one day, I can make it up on another day before the week ends. Both of my daughters are also using it, so we encourage each other through the app.
Beth-Good luck with your scan Wednesday. I know you are anxious about it, but it will be over quickly. I wonder if the arimidex was causing all of your joint pains. I had pretty bad pains for a long time, but eventually they got much better. It is hard to pinpoint also, but towards the end of chemo, then throughout radiation, and onward from there, I had really achy legs. They felt like they weighed an extra 100 pounds a piece, and I was having to drag them around with me everywhere I went. In my case, I am not sure how much of the joint discomfort was a result of the arimidex.
Grandma-So glad you are feeling good and that you have lost some weight. I know that was a big goal for you, and I am glad your pcp is helping you with it. Something a huge as weight loss is so much easier when you have help and support. I am also glad that your tinnitis has become more manageable for you.
Phyllis-Just keep plugging away at those chemo cycles. You should not have had to fight this battle all over again, but since you did, I am glad that you have kept your strength up and your attitude positive, in spite of how terrible the second set of chemo cycles had to have been. I think about that often and am always pulling for you. It can't be too much longer now. Then hopefully, you will begin to heal again.
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Hi All,
Just checking in , it has been awhile.
Beth, I had alot of joint pain duirng chemo/rads. Toward the end getting out of bed or off the couch, just moving was soooo uncomfortable. It all went away after a bit. In the interim, advil, advil...
Grandma, glad to hear things are getting better
Phyllis - Hang in there, hopefully it will beover soon.
I have my first follow up and scan on June 28th. Want to get there, get it over and be done. In the interim work is very busy, so that is good. Keeps my mind off of all else. So between , work, my kids and soon to b ex (who is he , this is not the man I married, I can keep my mind on lots of other things. This is good cuz every ache, headache, itch( a symptom with IBC) makes me crazy
Wish all a peaceful evening and be well
Nel
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Bahamamom, 18 pounds, wow! That is incredible! Hope you're enjoying retirement.
Nel, How was Bermuda? I think I heard you and your kids rumblin'.
Phyllis, you can do this!
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Bahamamom--Exercise and diet changes and a loss of 18 pounds! Way to go and congratulations! You are inspiring me to do more. I have given up sweet tea except once a month when I treat myself. I have lost 8 lbs so far.
My stress test turned out fine. I'll have to wait for the ultrasound results. We are going back to Indiana for the weekend for Father's Day. My husband hasn't seen the babies since January!
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Grandma,
Yep some rumblin in Bermuda. The night before we left , some yelling and screaming. I just stayed in the shower until the yelling stopped. Eventually we got to dinner and I only looked a little wrinkled!
Be well
Nel
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Just wanted to let everyone know that I got a good report from my oncologist this week. She has been doing a breast exam when I see her, blood work, and vitals. That is about all, but I always like it when she tells me that she doesn't feel anything except some scar tissue on the lumpectomy side and that all else looks good. As we all head into the end of our 2nd year since our diagnoses, I hope we continue to hear only good reports. I hope everyone is having a good summer so far.
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bahamama
Yeah for the good news. I have my first and it sounds like only scan, unless I have symptoms, next Friday. Difficulty believing it has been almost two years for all of us. A round of good news for everyone
Be well
Nel
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Hi All,
I had my first follow up on Friday since finishing treatment in February.. Day prior my 19 year old son totaled his car less than 1/2 mile from home. He is bumped and bruised,but otherwise OK.No one else in the car and he hit a pole not another car. So the best possible outcome. He was out the night before with friends, did n't sleep well, partying and fell asleep coming home. Issues with poor choices are long standing, but he is OK. So I go to my CT Scan and follow up a bit distracted. After almost 2 years of going to the same hospital weekly, I couldn't remember what driection to go in when leaving my house. Not playing my A game. CT results - 3 areas of concern rib, spine and adrenal gland. Plus I pointed out a lump about half inch below my scar. My onc wasn't there apppt was with his NP who is very good but not my onc! I did have 2 friends with me thank goodness. Both nurses.
The lump set off a chain reaction of tests, ultrasound, mammogram (REALLY) the most painful experience I have ever had. There is nothing to mammo but surgeon insisted, and a needle aspiration. So instead of spending 2 hours at the hospital, it was 8. The lump they have determined is a cyst and they are not concerned (YEAH) Surgeon took one look at it and said nothing. Should have seen her before all the tests, but I get they need to make sure.
Onc called me last night, was it the crying with his NP when she said he would call me on Monday - yes I think so and told her if he waited, he would be calling me in a detox unit. He said areas of concern but they are "not damming" (interesting medical term) and he would tell me if they were. He is a very straight shooter. All can be explained by other things. Even so he is scheduling me for a PET Scan next week (YEAH). I get that as well and glad he is. So like all of us I wanted a free and clear, but got wait a minute, probably free and clear but we need to be sure. I am frustrated that this may occur many more times over my life time cuz once you have cancer - everything becomes significant. Or so it seems. Plan - wait for PET Scan to be scheduled for next week, wait for results and live my life in the interim.
Sorry so long - thanks for listening
Be well
Nel
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Nel, I'm so glad your son wasn't seriously injured. I raised two kids so I know what you mean about the poor choices.
I'm also glad your onco didn't wait til Monday to call. I hate the waiting game. So stressful. Of course we're going to worry if they tell us there are areas of concern. Did he elaborate on what "other things" it could be? I hope, for your sake, they get you in early in the week. I don't think they realize, if they haven't been through it, how much stress they cause us by a poor choice of words. Your onco sounds more understanding, though. Let us know how things turn out.
My mammo is coming up in August and I dread it. No talk of any other tests, yet.
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Nel-Sorry you had such an exhausting day at the hospital and for the uncertainty. Unfortunately, now I think we always think the worst possible outcome whenever there is an uncertainty. Funny, I always thought the opposite of that before. That was the old me, the BC one. Anyway, I am glad that most of the things your doctors noted turned out to be okay and hope that is the case again with the PET scan. Do try to live your life, though, in the interim. That is more like the new me, the ABC one. I really do try to do the things I enjoy more every day. With my retiring recently, it is easier to do now than it was.
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Nel-I hate it that you have to go through a waiting game again. I always tend to think the worst. I am hoping you get good news.
GrandmaV-I hope you get good news too.
My tests have come back good. I have a small lump on my thyroid but it hasn't grown in 6 months so YAY for that good news! I feel so much better when the test results are good. I worry about cancer returning and since I cannot have mammograms, it is scary to think where it would return. I just don't dwell on it.
Enjoy the fireworks this year and be safe!
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Thanks all. Had PET Scan Tuesday afternoon. I was told 2-3 days before I would hear results from Onc. But tech told me in reality onc would have access to results last night/this AM. So maybe I hear from him today, if not hopefully Friday. I am giving him until about noon on Friday and then I call him. Trying not to worry, but easier said than done. And very caring friends and family keep calling, love them and their concern, but seems to just keep bringing it all home, Message to friends - when I hear , you will hear.
In the interim, a very strong reminder to live our lives fully each day.
Hope everyone has a great 4th.
Be well
Nel
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hi, everyone! i recently heard from grandmaV, and it was so good to connect with a november sister! i need to check in here more. had my 2-year (after diagnosis) mammo and it was clear. they want me to do an MRI, but i'm not sure i should. i see my onc on monday so i'll ask him. started arimidex 3 months ago and haven't had any side effects to speak of. it's a good excuse for being tired, though! i'm still dealing with chemo brain. i can't multi-task and have to really concentrate when i'm doing things. if i get ahead of myself, i make mistakes and feel really dumb. like grandmaV has said, i'm starting to feel almost myself now. i have more energy and just feel a lot happier. i hope everyone is doing well, too. miss you guys!!
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Hi All,
The CT scan is connected to the PET Scan, the PET Scan is connected to the blood work , the blood work is conected to I am not sure what next. The song like that just keeps going thru my head! On the CT scan several issues, on the PET follow up , only hot spot was my adrenal gland. Hence the blood work. They avoid adrenal biopsys cuz if cancer, the biopsy could make it worse. Some of the blood work is back, all is within normal range. Some won't be back until the 18th. The tumor markers are good, so they don't beleive the bc has spread to my adrenal, but something is wrong with my adrenal gland. It might be some sort of adrenal gland dysfunction or cancer of the adrenal ( fingers crossed NO) I am of the firm belief-IT IS NOTHING. Can't even entertain anything else. Ithink my adrenal gland is just tired from the raising of teenagers, frequent bouts of adrenal rush with their antics.
In the interim - work is busy, I have an interview for a great job on Monday, I feel well and the humidity is gone for at least today.
Bewell
Nel
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Nel, YaYa, Beth, bahamamom, GrandmaV, everyone! Good morning!
Nel - sorry you're going through this again! It sucks.
I've been kind of MIA. This chemo is still hard. I've done 4 rounds of the Ixempra and only one full round of the Xeloda. This round (#4) we're doing a little different. I took one week of Xeloda the same week as the Ixempra and of course my counts tanked again. Got one neupogen shot and the next week my counts were back up enough to restart the Xeloda! That hasn't happened before. So, I am doing 2 weeks of Xeloda and pushing back the #5 Ixempra a week. We'll see if it works better.
I had scans on 6/27 and I think everything is good but it's hard to tell because the radiologist hosed up the report...twice! He lost my gallbladder and a few other pertinent organs so I called and mentioned the discrepancies. Hopefully I won't have to make a big stink and they will have another radiologist reread from the start with comparison to the correct previous scans.
You ladies have a wonderful weekend!
Phyllis
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Phillis, my heart goes out to you. I wish there was some way we could lighten your load for you. And your radiologist messing up the reports. It just adds to your stress. Sometimes I don't think they realize that peoples lives are effected when they don't do their job right. We depend so much on them. I bet if it was his mothers report it would have been right the first time. I hope you get some relief soon.
Nel, I hope you have good news soon on your adrenal gland and I hope your job interview goes well tomorrow.
I have nothing new to report. I see my oncologist tomorrow for my 3 month check. I don't anticipate anything bad. The clinical trial I'm on ends tomorrow so I have to see the study nurse and have labs. I'm so glad I won't have to take so many pills anymore, it will be 6 pills less a day. I don't think I want to do anymore trials (this was my second). I'm through being a guinea pig for now.
Hi to everyone else. Hope all is well.
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Saw my onco today, waited 2 hours and 45 minutes, for 3 minutes with him. "Everything looks good" he said, "Come back in 3 months". Everyone in the waiting room were making jokes about being the last one for the day. One of the receptionists yelled out "Don't forget to turn off the lights when you leave". One of the other patients said "yea, and take out the trash". It made the time a little less frustrating.
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phyllis - wish this to be done for you and to begin the healing and a pox on the radiologist. REALLY!
Grandma - Great News
All blood work back and within normal ranges - but still an issue with adrenal gland. My onc has made an appoitnment with an endocrinologist for next week. Need me to see someone who specializes in adrenal - still maybe some adrenal issue or as they said, some specialized tumor that endo guy can rule in or out. Concerned that they made an appointment with a rush on it and had this doc squeeze me in - I take great heart in the laid back approach - beleiving there is less to worry about. So on to next Tuesday Job interview rescheduled for Thursday!
Stay cool and be well
Nel
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grandma - so glad you had a good appointment. Now they just need to work on their scheduling issue!
nel - here's hoping that what they're seeing is just a piece of bubble gum left over from your childhood. I bet you swallowed at least one back then. My mom used to tell me it would get stuck in there. Well, that's my story! I hope yours is as easy as that!
Found out yesterday that I do not have truncal lymphedema but I do have truncal edema left from the mastectomy. So glad I can stop wearing the compression tops.
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Hello Everyone! I see my oncologist next month for a checkup but I am not having any issues. They will be checking my thyroid every six months but I am okay with it. I have burning sensations in my legs and my ankles hurt. I haven't been taking the Arimidex. I keep forgetting to ask my onc about it. I don't have the horrible joint pain without it.
I went to Indiana for a visit for 2 weeks and my youngest daughter and her husband brought me home and stayed with us for two weeks. My oldest daughter came down with her husband 2 days later and brought the babiez. I have cried all day today because they left at 4 this morning. I didn't have empty nest when our children left home. This time with the twins has been so rough on me. I love living here and want my children to move here with me. Not going to happen they say.
I was sitting here wishing I had someone to talk to and remembered my November sisters. Thanks to all of you for getting me through chemo. It meant so much to me to talk to you and have you go through that tough time together. For those of you still having treatments, I pray you have many symptom free days!
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