Starting Chemo in Nov. 2011...anyone else?
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Grandma ~ I know you will make the decision that is right for you, but I totally get it that the path to your decision is a very unnerving one. I have never heard the definition of worry for BC survivors...but Quaatsi hit the nail on the head...the worry is like a form of cancer and in some way always seems to be in our minds ready to spoil our happiness. I guess that as survivors, we have to try and stay strong, but know that we can always rely on each other for comfort during the hard times, and laughs in the good times.
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I haven't been on in forever and was glad to see lots of the names I remember. All is well with my Oncologist appointments. I am almost a 4 year survivor! Glad to see everyone doing great! Will be more involved in these boards. You are a great group of ladies
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Linda - Thanks for the encouragement. I'm waiting until I see the breast surgeon September 16. I think I can wait that long.
Bonseye - It's good to see you're doing well. You had such a long recovery in the beginning with infections and I think I remember a blood clot from tamoxifen. You had a rough time. So glad you checked in with us.
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Hi ladies! I've been off the boards for a long time.
Q and Beth - I'm sorry to read that you're having hard times.
I finished rads on March 31 and had gallbladder surgery on April 2. I had 3 month scans on July 1. The PET showed that there are still active tumor cells but fewer than before. RO seemed to be happy. Me, not so much! He did say that he expects the tumor cells to continue dying off. I have more scans in early October.
I'm starting to feel pretty good on a more regular basis. I'm about 6 months out of this third treatment. The first time I only made it 5 months so this is better, right? ?
I'm having Zometa treatments monthly and they kick my behind for a day or so but they're so much better than chemo!
Phyllis
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Phyllis, It's good to hear from you. Hope your RO is right and the tumor cells continue to die off. Happiness is relative. If it were their tumor cells still active I wonder how happy they'd be. And gall bladder surgery, too? I'm glad you're feeling better, hope that continues.
I saw my BS today and they did a sonogram of the 2 complicated cysts that were found last month. They concur with RO to watch and wait. Redo 3D mammo and sono in 6 months and if no change wait another 6 months and so on and on. I think I'm ok with it. They're the specialists. PA thought a biopsy might be in order, but BS did not, so it's in my court now to continue breast exams and report any change. I'm feeling really good, though. I took a break from dieting and gained back 5 pounds, but have that off again to make it 40 pounds off. Would like to loose another 40. I'm continuing belly dancing, started lifting weights, hula hooping (terrible at it) but it's fun. Bought a jump rope and found out the knees can't take the pounding, so am giving that up. I get a lot of encouragement from my 17 year old granddaughter. Even just seeing her sweet smile is better than all the medicine in the world. Tinnitus comes and goes now. So I'm hopeful it will finally go for good. I'm taking so many supplements, it's crazy. Most of them doctors put me on for various side effects from femara. Hot flashes are very few and far between now, seem to be worse when I'm dehydrated. So I have to get at least 3 quarts of water a day. So that's my story. Hope everyone finds joy in each day.
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Hi everyone. I am glad to hear that you are still cancer-free Bonseye. Phyllis, I agree with Grandma that happiness is relative, and I certainly understand your hoping for greater success with the active cancer cells, but I am glad that your doctor is happy with the results and expecting them to continue to improve. I am also glad that the meds you are taking are not too bad and I hope your toleration of it continues. Grandma, it sounds like it should be safe enough to watch and wait on the cysts. Wow, 40 pounds! That is great! I am so proud of you. I know you were really struggling with the weight, so that is a huge accomplishment. How are your treatments going Quaatsi and Beth? Linda, how is your new school year going?
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Hi All! Grandma, I am glad that the BS didn't feel that you needed to rush and have a biopsy. They are pretty good and pushing the panic button when it's needed, so I will continue with positive thoughts for you that there will be no changes when you go back for your 6 month tests.
Bahamamom ~ Thanks for the good wishes for a new school year, but I actually retired at the end of August. It was a hard decision to make because I had been the office manager at a school I loved for 29 years! One of my best friends worked with me all of that time and she retired in June, which did make a difference in my decision. While I was torturing myself with the pros and cons, one night my husband said, "You have had cancer, you should just go and enjoy life and not have the stress of working any more." I finally realized he was right, and even though I was afraid I might be bored after working all of my life (never had kids, so never stayed home), everyone is right when they say you wonder how you had time to work. It's been a month and I have not been bored for one minute! After 36 years with the school district, I have finally realized that it's someone else's turn to deal with the stress! It's kind of weird to do whatever I want every day and get paid for it! However, it definitely works for me!
Phyllis ~ it's wonderful to hear that those tumor cells are dying off, and yes, 6 months is definitely better than 5! it's especially wonderful to hear that you are feeling better. Praying that your October scans will show even more improvement. Keeping you in my prayers!
Hugs to all!
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Linda-Oh, yes, I remember now that you did retire this year. My memory is not what it used to be. I understand your thinking on deciding to retire when you did. I was in pretty much the same situation. I will never forget when my youngest daughter told me that her dad was upset that he hadn't gone on and retired the end of September, when he was first eligible to retire, so that he could take care of me. I think he was really worried, and since he worked nights, he hated leaving me at home alone, especially the first week after chemo treatments. I remember thinking that was very sweet of him, but really, I kept right on working myself right through the treatments. Anyway, after having the whole BC experience, I began to think of retiring too. I finished the year and worked one more school year, then retired 2 years ago. I thought of all the pros and cons, but the one thing I kept coming back to was what if I only had a few more years and I spent them doing a job I no longer found enjoyable. I certainly didn't hate being a teacher, but so much has changed over the years, not for the better, in the education field, and the stress was wearing me down. Now I help both of my daughters who are also teachers anytime I want to feel needed or useful, and the rest of the time, I do mostly whatever I want.
I have my yearly mammogram on Monday. I am a little more apprehensive than usual (and that is more than a little) because I saw my onc last week, who said she felt something in the other breast. She felt around for a good little bit, then said she was sure it was fat and wasn't even going to get it sonogrammed. But, of course, you know it is easy enough for our minds to go 'there' without any help. I will be glad that the mammogram will be done on Monday. Plus, the doctor there always does a physical exam too, so I will be more confident after that is over.
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Bahamamom ~ I guess i had forgotten that you were a retired teacher. I am not surprised that your daughters are teachers as well. In my MANY years at the school, we would see the kids of teachers who had retired come back to teach themselves. It';s kind of the same thing as being a cop or a fireman is a tradition the family keeps going. You are certainly right about changes in the educational field. Although it seems as if it has become a "what goes around, comes around again" thing. I was hearing some of the same buzz words now as I had a couple of decades ago!
I know my husband felt bad leaving me the first week of chemo, too. He would always take a day off the second or third day after the chemo session to make sure I didn't collapse like I almost did the first session of chemo. I have read many times that the caregiver has a hard time with their mate having chemo and I believe that is very true. He can't retire for another year and a half or two years, but I know he will be the best retired person ever. He had a total of 7 months off in the past year because he had both knees replaced (at different times). Once he was mobile he found stuff to do all the time that didn't require too much walking or bending. He was busy every day and I am sure that will be the case when he does retire. Of course, I will have to monitor his Amazon use since there were lots of packages that arrived while he was home!
I hope your mammogram comes out perfect. I know exactly how you feel about waiting for results. I am glad your doctor doesn't think you need a sonogram, but if you really feel uneasy about it, will the doctor let you have it done? I see a nurse practioner, who is a breast care specialist, every 6 months. She does a very, very thorough breast exam and I am happy that I don't have to go through a whole year without someone besides me check my breasts. Please let us know the results and believe me, I will be thinking positive thoughts and praying that all is well!
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Wow! It's been a long time. I hope you are all doing great and are just too busy to post! Missing all of you!
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hi LinnyHopp--nope--my life has been a roller coaster--likely the weirdest and hardest time of my life. My son realed out of controlled last February when the cancer returned and he has not dealt with it well. Husband is his normal shut down so I have a great friend who take me to chemo very 3 weeks. Lots of SEs and tumor markers going up but test inconsclusive. Nothing has been "easy" but I am still here and still riding a little bit.
Hope others holidays are considerably better-- I am not in the mood for celebration much, nor have energy.
hugs to all. Q
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Thanks for posting Linda. I do miss hearing from all of our friends on this discussion board. I had a clear mammogram in October and am feeling fine. I am spending my time playing with my 2 grandchildren, visiting with my own siblings and their families, watching The Walking Dead, and all the things that retired people do. It is good to not be having to think about BC all the time. I saw recently where the American Cancer Society is lowering their recommendations on screening mammograms to every 2 years. I just want to say that for me, that could have made a big difference in my prognosis. I had, had one every year since age 40. And when they saw it on the mammogram before even the surgeon could feel it, it had already travelled to my lymph nodes. I wish a very Merry Christmas and good health to all
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Good News Bahamamam-- by the way how did you choose that screen name--I love it! Q
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Q, so sorry that you continue to have to fight this horrible battle with your breast cancer and its side effects. That is way beyond more than anyone should have to deal with, even with lots of support. In your case, I know it is even harder with your worry over your son and lack of support from your husband. I wonder if you have a nurse navigator who may be able to get help for your son, which, in turn, would help you. You are in my prayers, and I am wishing you the gift of peace for this holiday season.
My screen name is a very good story. Many years ago, my 2 favorite sisters and I went to Las Vegas together for 3 days. All of us had children, husbands, jobs and none of us had ever been away from our families for more than a few hours at a time. It was so great to be free from all responsibility and with my sisters who live a long ways away from me. Anyway, we went to one of those places where they take pictures of your face and then place them onto a different body. As they completed the pictures, you would see them up on a big screen inside the store. The guy who ran the place would make comments about them, trying to get the passersby to sign up to have the pictures done. One of my pictures (well, my face anyway) was placed on a tall (I am 4 feet 11 inches) voluptuous woman wearing a bikini in a beach scene background. The guy yelled out into his microphone, "Bahamamama", and my sisters and I saw the picture (as did everyone else walking by) and we just cackled out loud. After that, I was bahamamom.
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Quaatsi ~ Sorry to hear that things haven't been going well for you. It's bad enough to have to deal with all the sh** that goes with stinking cancer once, let alone what you have been going through. i feel so bad that your husband isn't there for you emotionally during this time. I can't even imagine what that must feel like. I find it amazing that people can shut themselves down like that. I had/have people like that in my family and don't like them very much...dumb asses! As for your son, Bahamamom's idea sounds like it might help, but then again, you have probably tried many resources already. If not, the nurse navigator might be a great idea. I hate that you are having bad SE's, but hope and pray that your tumor markers will level off. I hate to even have my follow up tests...I feel like I am playing Russian Roulette when they take the blood for the tumor marker test. I am sad that you don't have the energy for the holidays, but I totally understand. The main focus of your life right now is YOU...everything else can wait. I, too, hope that you will find peace as the season progresses. You are in my prayers and on my heart.
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Bahamamom ~ Love how you got your screen name. My friend from childhood (from the time we were born) and I meet in Vegas every year or so. One year we passed by the Chippendale guys who managed to pull us over for some pictures. Talk about ridiculous, especially the fact that she talked herself and me to buy one of the pictures. A couple of drinks were involved in that adventure!
OK...now for the serious part...I am so upset that the American Cancer Society has changed the recommendations for mammograms as well. I was always very careful to make sure I had one yearly. Like you, when my cancer was found, it had already spread to one of my nodes. To think that women may not have the opportunity to be tested each year is horrible in my opinion. Before I had the MRI to see exactly what was going on, my tumor could not be felt. I was told that I was probably stage 1...we know how correct that information wasn't!
I know what you mean about retirement. I am so glad my husband was able to convince me to retire even though I was kicking and screaming (figuratively) all the way to do my paperwork. There have been so many personnel changes in the office, I know I would have been very unhappy and it would have been sad to leave my job on a downhill feeling because I loved every single day I was there. I have learned that sometimes you have to listen to your inner soul really closely to find out what is best for your life. By the way, it's only been 3 months since I retired, and I truly don't know how I had time to work...that saying really has been true for me.
I hope that the holidays bring everyone, even those still fighting the battle, peace and love. We have shared a lot through the years and I consider every one of you a hero and a friend. Blessings to all...Linda
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not much being posted but here I am reaching out-- I think I am going to quit. I am so tired of everything. I spent a week in the hospital with a 104 fever and long story short they did nothing to help me and even told me that they were busy with someone "sicker than me" so that is why they didn't put in orders or meds or tests. And this--at a teaching university hospital. I came home sicker and with absolutely no diagnosis of what was going on. They could have done tests and had they--they would have found lesions of something on my pancreas and my liver--maybe not cancer but still something that is affecting the quality of my life--but of course, i wasn't sick enough to be worthy.
My tumor marker keeps going up and they don't know why. My son is a constant struggle and i hurt from head to toe and don't even WANT to go outside to see my horses--yes, I am depressed but nothing helps that either--certainly not drugs.
Most "friends" are gone--cutting their losses I suppose--they don't want to feel emotional pain when I die I guess but gone except for a few.
Not only alone but worn out from too much struggle. it is almost exactly 29 years to the day this all started. I am tired of this non life.
I guess I really am a quitter. I have to decide to continue chemo--if I don'tdo anymore, the end will be within the year--otherwise I have to live like this for another 3 years maybe. I am feeling like it is better to get it over with.
I feel like I don't matter anymore. I am just here taking up the worlds resources that should be put to people whom they can actually be a success with and save them. Me? there is no hope anyway.
I don't know if I have the courage to make a decision. I need courage to just stop and accept my fate.
Life without purpose is no life at all.
Q
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I wish I could do more than just try to be here for you. First of all I am so mad that your caregivers treated you as if you were not important enough to treat. All doctors and nurses worth anything should give every single patient their very best attention and care. There is no excuse for them! As for your friends, that is sad but I have to say that is a pretty common complaint. I know having friends desert you when you most need them hurts but it seems like it is their loss. You really are a great woman who has inspired me and others on this board. You are exhausted, I know, and I am so sorry for all your pain. Twenty-nine years is a very long time, but I know some of those years have been wonderful. I pray that you feel better soon and regain some strength so that you can find some enjoyment in your life. Wishing you a peaceful week and sending you a big hug
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Quaatsi ~ My heart is with you in your struggle. As Bahamam said, the "care" you experienced in the hospital is inexcusable. A week in the hospital with a 104 degree fever and poor care would definitely make me feel some of the things you are talking about, including not wanting to fight anymore. I know you must be feeling overwhelmed, but I hope you can get past the things that make you feel so defeated. You have been an inspiration to so many people, including me, and being so honest in sharing what you are feeling makes me feel so proud of you and the courage you have had through a situation that no one ever needs or wants. Only you can decide what feels right for you, but please know that you continue to give me courage with your strength of character to have made it through 29 years. As for friends, I totally understand how you feel. My self-proclaimed "best" friend of over 30 years barely acknowledged my bc and never contacted me again for reasons I will never understand. However, I have come to know who truly matters in my life during this journey and I learned that a few people who really care will always be there for me, and a few people who truly care are better than dozens that are pretenders. As for family difficulties, I hope that the situation will change. I, too, wish that I could do more for you. I will be here to listen to you and support you. I pray that you will start to feel better and maybe even well enough to spend time with your horses. It's amazing how our animals can heal our spirit and I hope that will happen for you. Please let us know how you are doing and know that we care about you. Sending you a cyber hug...Linda
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Had Chemo wednesday. ache and hurt all night. I am going for a second opinion at MD Anderson which will be a 4 hour drive but things are not adding up. My oncologist, whom i like, encouraged another set of eyes. Tumor marker keeps rising and my GI system is a mess. I have all the symptoms that only 2% get from this supposedly "easy" chemo. I am tired of hearing it so I am sure what friends I have are tired of it as well. Family really does not get it-- i think they just close themselves down. but then the lonliness sets in. oh well...
I give up much hope that hospital doctors care so maybe that will help to stay away--after all all these hospital borne illnesses...lol
thanks for your support. Q
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Quaatsi, I think a second opinion is a good idea. What is the "easy" chemo you're on? You may have already been given this, but I've heard a lot of good things about TDM1. Also the combination of two targeted therapies, Herceptin and pertuzumab along with docetaxel. I know you're tired of treatment but there is hope that something might help. The latest one I heard about is the vaccine, but I think it's still in clinical trials, which you might be able to join. The way I understand it, is they take out some of your white blood cells, reprogram them and put them back in. That's probably an oversimplified explanation, but it's how I can understand it. MDAnderson will definitely be the place to go to find out.
You're the only one that can decide when you've had enough. And it doesn't mean you're a quitter. Quality of life matters most definitely. Friends who've never had cancer are incapable of understanding. It's beyond them. It reminds them of their own mortality and they don't want that reminder. Others are just insensitive. I think you have and are doing remarkably well and will make the right decision for you.
I know you're in the natural medical field and an expert in natural treatments, so I don't presume to tell you what might help you, but there are some natural products being studied by researchers that are proving to be effective. One of those researchers is at MDAnderson, Bharat Aggarwal. He is head of the cytokine department and one of the scientists that helped discover herceptin when he worked for genetech and is conducting clinical trials of at least one natural product and researching many others. I'm not in the habit of promoting products, but if you would like the links to some of this information please private message me. Anyone else that would like more info about these things can private message me too.
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Quaatsi,
29 years - amazing, what strength that has taken. I am not sure any treatment is "easy" Everything has some se's and I believe over time the se's just seem to pile on. So what has been easy initially, is no longer. This is all up to you. You will know when you can no longer continue and if you think you have a bit more in you.
I am feeling the pull away of friends and some I am stepping away from. Lonliness is significant. I wish there was a place where we could all go and hang out together, hours of ice cream, laughter, wine and tears. It would be wonderful.
I wish you peace and comfort
Nel
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THANKS Nel, i am trying my best to keep moving forward. I think one of my worst enemies might be just getting caught up in the physical state I am in, in the pain and forgetting that there is still some times of no pain and lots of joy. I think there is a certain discipline to just not allow myself that kind of leeway to go "there"-- At least that is what I am going to work on.
i find myself pulling away from many people and you know what? maybe they are just the people I should be pulling away from!! Maybe there is some excitement in making new kinds of friends--new types of people -- that alone might be purpose to be here-- to see what I can learn ... I don't know but I am going camping for a retreat for the next two weeks. out of cell range and with my best buddy, My Heart who i think feels quite neglected these days. I expect he will be happy to be going camping too
thanks for the support and what a hoot it would be to all get together and eat ice cream.. and maybe some cake too? Q
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Good for you Quaatsi, Sounds like just what you need.
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Quaatsi ~ I am so glad some of our other "November 2011" buddies have stopped by to give you encouragement and knowledge. I am so glad you are going to be enjoying some time with your best buddy. Have a wonderful time and I hope the two week break gives you renewed strength. I'm glad you are going to get a second opinion, and very happy that your current doctor encouraged you to do that. Take care and let us know how you are doing when you return. By the way, I am also for the wine, cake, laughter, and friendship. Wouldn't it be wonderful if that really happened?
Nel ~ You didn't say how you are doing, I hope you are doing well. I think many of us have found out who are the true blue people in our lives. And I totally agree with Quaatsi that the people we have distanced ourselves from are the ones that are probably not good for us to be around anyway. I have pretty much always felt like that, but this journey has given me the ability to let go of a lot of things that really weren't positive for me. The silver lining maybe? I would much rather not have found out this way, but can appreciate feeling free of people who weren't truly meant to be in my life.
Grandma ~ It sounds like you have been involved in a lot of research. I would love the links and will PM you.
Mostly, I would like to tell you all that you are all amazing women whose knowledge, strength and courage continue to be a blessing in my life.
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I continue to do well, NED for almost 2.5 years. I am so very grateful . I struggle with fatigue, some days just overwhelming. I express, very often, my frustration to my oncologist. I used to be someone who could do 6 things at a time, now 1 and rest. I get breaks from the tykerb and I feel like myself - love those weeks. Would like to have them more often and for longer, but onc is concerned that the nasty cancer cells hiding would come roaring back. So for no I continue to adjust to my new normal!
I am still working, my kids are not quite launched, 17 and 22, but I am seeing the light (LOL) Planning the next stage of retirement -but a year or 2 off.
Hope all are well
Nel
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Hi Nel ~ So glad to hear that you are doing well. Fatigue is something I have dealt with since chemo. I'm thinking maybe it's mosty age...63 and counting...I find that most of my friends who are the same age feel the same way, so I'm hoping I am (possibly) normal for a change! Like you wrote, I think what we feel is our new normal. Sorry that you have to continue to take the tykerb, but since it's working, I'm sure that gives you the incentive to continue. I just had my 6 month visit to the MO, so it's on to the nail biting while waiting for blood test results. I happily retired last August and am enjoying not having to wake up every morning at the crack of dawn! Take care and hopefully some of our buddies will post soon.
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Hi everyone, update on breast that had the bloody discharge last spring, mammo and sonogram in July showed complicated cysts 7mm and 4 mm, which were benign. Radiologist recommended watch and wait. Had 6 month sonogram last week cysts had shrunk now estimated to be 6mm and 3mm. Going to watch and wait another 6 months and then if no growth back to once a year. yay! Also had my 1 year cardiologist appointment monitoring me for 5 years after Herceptin, heart still strong. Pulmonary hypertension has resolved, he said probably the weight loss. He just kept saying amazing, amazing. I guess most people with that usually get worse with time. I'm back to normal now. If I could have done a cartwheel down the hall, I would have. I see my onco next month. Still trying to loose more weight, I've been at this plateau and can't seem to get past it.
I hope everyone is finding joy in each day.
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GRANDMA V that is such wonderful news! I am so happy things are going so well--You got some very well deserved news. I hope the weight loss continues-- so important when we are triple positive since estrogen is in those crazy fat cells!!
Congrats--Q
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Thanks Quaatsi, hope you enjoyed camping.
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