Starting Chemo in Nov. 2011...anyone else?
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Hi Everyone! I can't believe I have gone such a long time without posting. i have to say that retirement keeps me busier than work ever did! i won a cruise, so my husband and I did that 2 weeks ago and had a great time. By chance, my girlfriends and I had planned a cruise on the same ship at the end of this month, so, oh darn, another trip! We had always talked about doing something to celebrate our retirement once all of us had retired, and we are very much looking forward to celebrating our freedom. I can't believe it has been 5 years since we all started this journey, and I am thrilled to be alive and happy along with the rest of you. I know some of you have had some issues, but I admire your tenacity and willingness to move on as the journey progresses. I hope that everyone is well and happy. I have loved being able to share my worries, fears, and successes with all of you. I saw my MO in August and had my mammogram which was clear. I know that I will always worry about the "beast" but have learned to live each day and appreciate life so much more. Take care and I hope that we will all continue to keep in touch when we can. Hugs to all!
P.S. Still battling the weight thing!!!! It beats battling the beast! ;-)
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Hi Everyone-- Happy Thanksgiving and hope you all are living life to the fullest! Q
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Thank you Q! Happy Thanksgiving to you too and everyone else as well. Linda, I am glad you got to enjoy 2 cruises, and I agree that retirement can keep us busier than work ever did. I am still trying with the weight, but I have gained back almost 20 pounds and am pretty upset about that. I just love to eat, especially sweets. I had been able to stop taking blood pressure medication after losing weight, but I realized this week that it is sneaking back up there on me. I could kick myself! Grandma, hang in there 3 more months with the arimidex. You've done great so far despite some uncomfortable side effects. My 5 year mammogram was clear-so happy about that!
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Hi Everyone! I can't believe it's already the end of 2016. I hope that all of you are doing well. I am busy every day and enjoying life with my family and friends. I hope that you are all doing the same. As the season of holidays gets closer, I am very grateful to be able to celebrate another Christmas. Whatever holidays you celebrate, or don't, I wish you a happy, peaceful and HEALTHY season filled with joy! Looking forward to checking back and seeing what you have all been up to.
P.S. Bahamamom ~ I am really having a hard time with the weight issue. I guess all we can do is try to avoid the sweets that we love...lol! Take care and enjoy those sweets. Tis the season!!!
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I don't know if anyone is still around our thread, but I thought I would give an update just in case. Had my bone density scan a couple weeks ago and saw my oncologist Friday. My bones have not been affected by the letrozole. I was scheduled to stop April 1, but my onco dropped the 10 year bomb on me. Some of the studies comparing 10 years versus 5 were finished last summer and now 10 years is also the standard, depending on several factors. I was so looking forward to getting off this drug and feeling better, but after talking to him and quite a few tears I've decided to stick with it for now. He said the longer the better. He said there's only a small percentage of women who can continue to take it after 5 years and I fit in that niche. I tolerate it relatively well, it doesn't appear to affect my bones, my tumor was 97% fed with estrogen and I have a high risk for recurrence up to 20 years. I am so disappointed. I wanted to put all this behind me and get my life back on track. I could push through the aches and pains and other side effects, because I could see an end in sight, now I can't. So he left it up to me. I will start seeing him every 6 months now instead of 3 which is good. I did some research into the studies and they have some good info on this site that helps to explain it in simple terms. http://www.breastcancer.org/research-news/10-yrs-of-femara-better-than-5
On the subject of weight, I had lost 40 pounds gained back 10 and re-lost that so 40 pounds down again. I would like to lose another 40, but this drug makes it so hard to loose. I'm in fairly good health otherwise. I see my cardiologist in February. I've had a heart rhythm problem since my mid twenties, and developed high blood pressure later on, so will also continue on those meds. If I can loose some more weight, I might be able to cut back on some of those.
I hope you all are finding 2017 a better year than last year and finding some joy everyday. I hope you will check in from time to time and let us know how you are.
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Happy New Year to everyone of you special ladies. Grandma, I was also advised to continue the anastrozole for 5 more years because of the one lymph node involved. I have mixed feelings,but I am going to take it as long as I can. I know what you mean about thinking you would have your life back on track again and understand your disappointment. Congratulations on getting the 10 pounds off again! I am working hard on my weight as well.
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Grandma & Bahamamom ~ I'm so glad I checked tonight and found that you had both posted. It sounds like we are all struggling with our weight which is very frustrating for sure. i guess all that we can do is to keep doing the best we can, especially with the AI's effect on our efforts. Like the 2 of you, I am sure I will be taking the AI for another 5 years if my bones can tolerate it. I have decided that while the side effects are a real pain, I would rather put up with them if it gives me a better chance to stick around for awhile. I continue to enjoy my retirement and can't believe it's actually been almost a year and a half since I retired. I have several friends that retired around the same time as I did and we try to plan things and get into some trouble as often as we can! I hope that you both will continue to check in here, and I will do the same. I hope that you are all enjoying the new year and will be happy and healthy in 2017! XO
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Linda and Bahama, looks like we're in the same boat. 5 more years. I may not do the whole 5, but I will stay on it for now. We'll have to see. I'm glad to know you're both sticking with it. When I turn 65 insurance changes may decide it for me. I'm 62 so I'll at least be on it that long.
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Hi everyone, I have some very sad news. I found an obituary today on-line that I'm pretty sure is our Beth Williams, aka Bethu77. Her last post was in July of 2015 and she sounded in very bad shape. I have checked from time to time trying to see what happened and finally found this on legacy.com with a picture and it looks like her. Also the second tribute has comments from loved ones who mention her battle with breast cancer. I gleaned some information from her posts that helped me identify her, She started out in Indiana and later moved to North Carolina. Well the Funeral Home mentioned is in Indiana. Also she was always talking about the babiez, and in the obituary it tells of two granddaughters Zoe and Zabrina. She passed away September 13, 2015 and that explains why we never heard from her. I hesitated to post this information until I was as sure as I could be it was her. I know you wanted to know, too. It's amazing how you can get attached to people you've never met in person and really miss them when they're gone. Here's the info:
http://www.legacy.com/obituaries/name/beth-william-obituary?pid=1000000175837157
http://www.tributes.com/obituary/show/Beth-Ann-Williams-102850484
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Thank you Grandma for sharing this information. I have often wondered about her and knew that her passing was a possibility because she was very sick, even with the cancer invading her remaining skin areas. You are right about this bond that we all share. As each of us experience successes and setbacks, it seems like they are a part of all of us.
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Very sad and yet at the same time, at least she is out of pain. Cancer SUCKS. And Grandma, thanks for doing the footwork and caring enough to find out and sharing with us. You guys are right-- it is amazing how connected we are. This is really the only board I am on --and as you can see, i don't post very often...sorry... but I feel a connection to all of you.
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You said it perfectly bahamamom, when something happens to one of us it's like it happens to all of us. I feel your pain when something goes wrong and I feel your joy when something goes right. I think about you all everyday and wonder how you are with your treatment and everyday matters. Especially those dealing with recurrence or mets and I'm in awe of your attitude and strength. Quaatsi, it's ok when you don't post, sometimes we don't feel like it, but just let us know from time to time how things are. You've been fighting this thing for decades and I just wish there was something I could do about it.
I also wonder about some of the others we haven't heard from in a very long time. I just hope they're not posting because their lives are going well and they've managed to put this behind them.
I felt that Beth was a very gentle soul. I also felt as though she were our little sister for some reason. I know she loved those babiez. Linda, Nel, Phyllis keep letting us know how you are. Any others from our group that read from time to time, please let us know how you are
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Grandma - thank you for the research Yes we all have a connection, I hate to hear this news about anyone on here. Bet was way too young and beautiful grandchildren who should have had many years with their grandmother.
I continue to do well on tykerb and Herceptin. I consider myself very fortunate to be stage 4, but NED 3 and a half years out.I am beginning retirement planning for late spring/ early summer this year. Lots to do as I begin this next phase. Sell condo, get kids settled, figure out $ etc. It is earlier than I might have if not for cancer. But I want to go while I still feel well enough to enjoy
Hope all continue well as we roll along.
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Grandma ~ Thanks so very much for sharing your news about Beth. Like the others, I feel sad to know that she will no longer be able to hold those Babeez. Cancer robs us of so much and even when we are NED, it's always lurking in the back of our minds. I plan on returning to this page and posting at least semi-regularly, and I hope the rest of you will as well. I hate hearing about anyone's setbacks, but love hearing about all of your joys and triumphs.
Nel ~ I am so happy to read that you are doing well on your maintenance drugs. May you have many, many, many more years of NED.
Bahamamom & Quaatsi ~ I agree that we all have a bond that will never be broken. Going through the difficult journey we have all been on together is something that helped me during the hardest fight of my life, and I'm sure that's true for all of us.
To all ~ Hugs and best wishes for many healthy years ahead. I hope, as Grandma posted, that we will continue to keep in touch as we live our lives. Love all of you for the hope, help and compassion you have always shown me.
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Anyone out there? Hope you are all doing well. Hugs to everyone!
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I'm here. Nothing new. I see my cardiologist Friday for annual check up. I'm increasing my exercise to try to loose some more weight. This plateau is frustrating. I did finally loose 1 more pound so 41 pounds off. Took 4 weeks to loose that 1 pound. How are you Linda?
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Hi, ladies. I am doing well, still struggling with my weight, but feeling fine. One day this week my husband and I are going to French Lick, Indiana to have a fun day. I love the casino there. I could get addicted to gambling if I hadn't worked too hard over the years to have what I have now. Ha! Ha! I decided I should get my arm checked again to see if I needed anything for my lymphedema. I had to have it wrapped and manual therapy for a while right after chemo and radiation, and since then, I have not worn my sleeve very much unless flying or exercising. I got a little worried when I got cellulitis in that arm in August, so I made an appointment with the lymphedema clinic just to see what my current level of disease is and how to better handle it from here. I am pretty disappointed with the results. The therapist said my arm was swollen some but not enough to warrant the full out therapy again. Of course, I am glad for that, but she sent me to get fitted for a special bra because she said I had a lot of scar tissue built up where the nodes had been taken out and that I needed some compression there to help out. I also went to get fitted for a new compression sleeve. I am so short (4 ft 10 in) and heavier than a child, so I have to get the sleeves custom made. So I went, got fitted, and the bra lady told me I needed a prosthesis. I told her that I didn't need to be any bigger. The surgery side is already larger than the other breast because it has some extra fluid in it. It weighs more too. I can feel it when I lift my breast with my hand, and I can tell it when I look in the mirror and see how my bra fits and how that side droops down more than the other side. But she gave me a bunch of double talk about how it would provide more support and wound up selling me a heavy prosthetic piece that fits into the special bra she said I needed. I didn't really know how to talk to her. She is supposed to know all about that, so I went along with it. But now I think she just wanted my money. The insurance didn't cover any of it anyway because it is $1250 deductible. I am happy with the new sleeve, but I wore the prosthesis home and promptly returned it to its box and don't plan to wear it. I could see how much it was weighing me down on that side. That couldn't be what the therapist wanted for me. I am going back to the therapist on Wednesday and she will check all of the things, so I will ask her if there is any kind of way that heavy thing can help me. Now that all the bills have come in though, it is costing $1,000, and I am not sure I even needed any of this. Okay, enough of my rant. I hope everyone is enjoying their families and whatever fun activities you do. Happy Valentine's Day!
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bahamamom- I'm glad you're doing well. I hope you get the situation with the prosthesis straightened out. It sounds so frustrating. I wonder if the sales lady works on commission. Let us know what you find out Wednesday.
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Thanks, Grandma. The lymphedema therapist was just as puzzled as I was about the prosthesis. She agreed with me that making the surgery side even heavier would not help. She said I should try to return it. She did like the bra and new sleeve though.
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As I look back almost 6 and a half years This is amazing This group is always my first touchstone My first connections
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Hi all, Just checking in to let you know the latest. I'm still on letrozole, still struggling with the idea of 5 more years. I have been having a sore left side around the ribs area for several months off and on. It's not a bad pain just like a sore muscle or a mild bruise. Only have it when I move a certain way so thought I must have hurt myself and keep reinjuring. For the last month it's been more frequent, but I have been working in the yard, so don't know if it's anything. Finally told my pcp, and asked for an x-ray, but she doesn't think it's bone related so is sending me for a sonogram of the area. I personally think that's a waste of time, but at least someone is going to pay attention. My appointment is May 4. She didn't think it necessary to call onco, or cardiologist, so will just go along for now. I'd like to go to a chiropractor but insurance doesn't pay for that, so will wait to see what sono. does. I've lost a total of 47 pounds and still working on that. Aches and pains from letrozole seem worse, but that might be because I really don't want to be on it anymore. I looked at the studies that onco is basing his decision on and am not sure the benefit is that much better for 10 years as opposed to 5. But I know I can do this better than going through chemo again.
I hope everyone else is doing well.
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Hi, Grandma, thanks for letting us know how you are doing/feeling. Losing 47 pounds is so awesome! I had lost about 40, but I have gained some of that back and work on it most every day, sometimes succeeding and sometimes not so much. I wish I knew the answer on the 10 years of letrozole. I am taking it also, but my hands continue to ache, my private area is dry as a bone, and I feel like it may be responsible for putting a dent in weight loss efforts. Of course, I choose those side effects over a recurrence, but I wish I knew if it was necessary. I hope you get answers on your painful area and that it is something easy to treat-definitely not C
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Hi everyone, Had my sonogram on upper left abdomen. Sono revealed nothing, so will wait to see what doc wants to do next. X-ray, I hope. Sono tech thought maybe a ct scan. bahamamom, I feel your pain, literally. I'm thinking of taking a short break from letrozole. I have a 3 day convention coming up in two weeks. Lots and Lots of walking, climbing stairs and sitting, would like to know if I'd feel better without it.
Hope all you are doing well.
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Hello Ladies ~ I can't believe I have been away from these boards for so long. I apologize for being a delinquent poster. I am still love being retirement, especially on Sunday nights! The days seem to go buy so quickly and I am grateful for every single one of them. My husband and I have been on a couple of cruises this year, and I am probably going to fly to Chicago for my best friend's granddaughter's wedding next month. We have been friends for our entire lives, as we lived on the same block from the time we were born, so it's really more like a sister than a friend. I wish I would have lost weight, but don't think 50 pounds will come off in the next 5 weeks! Congratulations to those of you who are doing so well with that issue. It's almost time for the dreaded mammogram. I hate having them done, especially since my diagnosis, but know that having regular mammograms probably saved my life, so I will grin and bear it! I continue to take the anastrazole. When I saw my MO she said that staying on it for another 5 years is best in my case. Not looking forward to more aches and pains, dryness in the nether regions and difficultly losing weight, but I am going to do my best to make the 10 year mark. I I hope all of you are doing well, feeling good, and enjoying every single day. I promise to check back much sooner this time. Hugs and love to all of you who will always be the bravest women I know!
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Hi All,
Difficult it has been 6 years since we all connected. I had progression in Aug 2013, and had a 3.5 year run of NED with Herceptin and tykerb. Fatigue but doable Recent progression this April, small and again in and around my adrenal gland. Now taking xeloda and continuing with Herceptin. Feel better than when we all began this trip. Will have scans in the fall fingers crossed.
In the meantime my son, 23, has moved into Boston, loving it and doing well again fingers crossed. My daughter, almost 19, graduated from high school and is trying to figure out her future in only the way a dramatic 19 year old can LOL We are going to Spain together in September - that should be a kick!! I manage a non-profit and told my board a year ago I wanted to leave at the end of this month. I have agreed to remain on very part time until the end of August - with no weekends!! They have been verrrrry slow in the hiring process. Have sold my condo and moving to my house on Cape Cod in August and will then need to figure out what the next stage of my life will look like.
linny - glad you are doing well ah yes the side effects from all this treatment
Grandma - how are you doing???
Hope everyone is enjoying life
Be well
Nel
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Hi everyone, It's good to hear from you Linda and Nel. I saw my onco Friday. Told him about the pain in the side and he said it sounded muscular. Wants to watch and wait, since it's not getting worse. I asked for an x-ray but, he said he didn't think it was ribs. I may go to chiropractor and pay for my own x-ray. He told me about a new test they can do on the original cancer tumor that can more accurately predict your risk of recurrence. If my risk is low, he may recommend I stop letrozole. Some insurance pays for it, some don't. I said if insurance pays then go ahead and order the test. I forgot to ask what the test is called, which is not like me at all. They told me back 6 years ago my risk of recurrence was 24% after surgery and before all the treatment. Herceptin was suppose to cut that risk in half, radiation by 30%, chemo was 30%, but he could never give me a percentage on letrozole, only that it was significant. So if the numbers have any meaning at all my risk should be down to 5.2% not counting letrozole. But of course a test on the original tumor would be without any treatment and it will be interesting to see what it says. Otherwise he doesn't want to see me for 6 months. Mammogram next month. Hope some others check in from time to time.
edited to add: found this on this site about the different genomic tests they can do:
http://www.breastcancer.org/symptoms/diagnosis/genomic_assays
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Here's another interesting site from the people who discovered the Breast Cancer index test:
https://www.answersbeyond5.com/
They are saying that only 3 to 5% of women with ER+ breast cancer benefit from an additional 5 years. That's only 3 to 5 out of 100 that benefit from the additional 5 years.
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In case anyone is interested or still reading. I just received a call from my oncologist about the genetic test he ordered. (Breast Cancer Index). Results show I have a 27% risk of recurrence without the next 5 years of aromatase inhibitor and a 10% risk if I continue on it for 5 more years. So he recommends 5 more years.
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Thanks for that update and other information, Grandma, thatyou've sent on the extra years of letrozole. I take anestrozole, pretty much same thing. It sounds smart to continue taking it with that much difference in the risks. I have been meaning to post on here, but I have been so busy. I just had a new grandbaby a couple of months ago, and I am helping my daughter as much as I can. She is her 3rd, and as I remember from my own 3, test one was a game changer. Plus, my youngest daughter is 18 weeks pregnant today. It is her first after 2 years of trying. She's so happy! I also just got back from visiting with my 4 sisters and 2 of my 3 brothers. Life is great! I am so thankful for all l have. I hope all of you ladies are enjoying as well.
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Had my 3D mammogram last Friday. They called today and want me back for more images tomorrow. The doctor saw more changes in the left breast (cancer was in the right breast). It's the side that had the complicated cysts in 2015 with a little blood from the nipple and they watched for a year and a half and the cysts got smaller. Now it's been a whole year. So you know how I feel tonight.
Enjoyed watching the eclipse today with my husband, son and granddaughter (10). My son found a lady on craigslist with an extra eclipse glasses so we all shared those. We didn't have totality, about 90%, but it was still amazing. We felt the temperature drop and the light dimmed and the shadows from the leaves of the trees put on a beautiful show. It was great.
Hope you all enjoyed the eclipse, too.
Bahamamom - grandbabies are the best.
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