Starting Chemo in Nov. 2011...anyone else?
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Hi Ladies! It's been very quiet out there. I hope you are all doing well and that someone will check in here soon. Miss you all. Hugs and happy fall!
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Hi Linda, Hope things are going well with you. Let us know how you are. I had my 1 year checkup yesterday, would normally had a mammogram but now it's chest wall exam. I went to a breast cancer survivor/thriver clinic my surgeon recommended. The nurse practitioner specializes in all things related to breast surgery, treatment, and lymphedema. The pains I have under my should blades since surgery she feels would be helped with physical therapy. She's sending me to a physical therapist that specializes in breast surgery and lymphedema patients too. I probably do need it but not looking forward to it. Besides the side effects of letrozole I appear to be doing ok. My knees have been so bad lately. She recommends asking my onco for a 3 week break from the letrozole to see if indeed it is all from side effects and maybe switching to a different aromatase inhibitor. I see him Oct. 16, so we'll see.
Quaatsi, I think about you often and hope you're finding a way to cope with all you have on your plate. I'm still feeling very lost and not quite sure how to move forward. Most days I feel like I'm just going through the motions and it feels somewhat pointless. Then once in a while I'll have a day that I'm very focused on living that day to the full, but it doesn't last and the depression is still there. Are you getting to be with your horses when you want to? Animals can be so comforting. I miss my dog so much, but my daughter and grandson are still here and they have a little dog. He's part dachshund and cairn terrier and a very good cuddler.
I hope we hear from our other buddies soon.
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Hi all. In case anyone's interested my onco has me on a 1 month break from letrozole to see if my knees get better. It's been 2 weeks and I'm not feeling much improvement. He wants to switch me to a different medicine after the month is over. I see a physical therapist November 5. That's all.
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Hi, everybody. There is another Starting chemo in November group, and I just saw this one. My first treatment is Friday Nov 2, and like all of you, I am nervous. I only have 4 treatments, and am hoping not to need a port. I got my hair cut today because it was below the shoulders, and I couldn't stand the idea of it coming out in clumps. Prayers for all of you on this list! We can do this!
EdithMary
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Hi ladies, I'm doing well. I just got back from a 2 week trip to see the national parks out west. My husband and I were part of a tour with other couples about our age. It was great to get away for awhile. I also just had my mammogram-still good-I'm very grateful for that.
Grandma, I'm curious to know if the medicine is causing the knee pain. It's so hard to tell with things like that because those can be very common symptoms for women our age anyway. If it is a side effect though, I hope your doctor can start you on a different one that better suits you and is safe and effective. I also hope that the physical therapy helps.
EdithMary, I saw your post and wanted to let you know that this thread is 7 years old. It looks like you are just starting your chemo and are at the same place in your breast cancer journey that we all were 7 years ago. You will find more support with a current thread. This thread meant a lot to me over the years especially in the beginning. It was a great source of information and comfort. I hope you find the current thread and connect with people who are facing similar situations a you. Good luck to you!
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I start Kadcyla in a week. Q
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Q, I have not heard of kadcycla, except what I googled after seeing your post this morning. Does it have a lot of side effects? I hope you have good results with it.
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Quaatsi - I've read good things about Kadcyla, but didn't know it's brand name. Correct me if I'm wrong, but I think this is the drug that was used in 2012 T-DM1 clinical trials. They were recruiting patients for the trial at my cancer center. I think the trial started in 2013 and they have had more recent trials as well. They were getting good results with a lot less toxicity. Herceptin with chemo attached had the Herceptin target the cancer cells and then the chemo would kill them. Like little missiles that would target and blast them away. It was found to extend life significantly. I hope you have the same results. How have you been?
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Hi everyone, My break from Aromatase inhibiter is over. I've noticed an improvement in my knees in just the last week. I found out more about the pain in joints. The estrogen blockers cause the lining of the sheath of the tendons of the joints to become inflamed and it takes some time for the inflammation to clear up after stopping. I can testify to that. I've been off just a little over a month. Doctors don't really know why they cause this inflammation, but suspect it's the lack of estrogen. Anyway, I have a prescription for anastrozole waiting for me at the pharmacy and I will be starting that this week. So bahamamom any tips?
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Grandma, I don't really have any tips on the anestrozole. I've been taking it for almost 7 years now (February), and I have had some problems with my hands mostly. Probably it started after about 6 months, definitely during the first year. I got trigger thumb on one hand, then a few months later the other thumb was the same. That got so bad I couldn't open doors or do anything like that, that requires thumb use. After several months when I was thinking I was going to have to have surgery to fix at least one side so I could do simple tasks it just suddenly got better. Now recently I am having trouble with some neuropathy in my wrists and a hand surgeon has diagnosed me with radial something. She says the tendons are encased in a sheath that protects them and mine are swollen and inflamed. Shots or surgery are options but I dont want either. I'm also now taking BonIva. I guess I'll just take it til I can't stand side effects anymore. Good luck and let me know how you do on it.
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bahamamom - Thanks for letting me know the side effects you've been experiencing. Have you had knee pain? I took my first anastrozole last night. I've been feeling better each day this week and am nervous about taking another aromatase inhibitor. I wonder if that's what caused my pulmonary hypertension. Onco says not likely. But breathing problems are listed as possible side effects. So we'll see what happens.
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Hoping everyone had a great Thanksgiving holiday. We’re still eating leftovers. Grandma, I don’t think I can blame the pills for any knee pain. I have had some knee pain for more years than I’ve been taking the AI. It isn’t that bad and seems to be worse when I’m heavier. Climbing stairs aggravates them more than anything else, and since I retired, I don’t often go up and down stairs anymore. So really I’d say just my hands are the side effects of the pills. It seems to me like one AI would have about the same effects as another in terms of estrogen blocking.
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Hi everyone, I hope things are going well for you. I've been on anastrozole for a little over 2 weeks and so far so good. My knees are continuing to improve so maybe this is going to be better. I have physical therapy for my surgery site twice a week now for, I think six weeks. Started last Tuesday. Mostly she's concentrating on moving lymph and trying to break up some scar tissue. I guess I'm holding myself different and that's the cause of the pain under my shoulder blades, but she really got my muscles to relax. I think it's going to help. I'm really struggling to loose that 20 pounds I regained. I want to get it off before April when I have my echocardiogram to see if there's any improvement on the pulmonary hypertension.
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Healthy New Year to All,
Continue on hercpetin and perjeta for the present. Scan sometime in February. Last scan was NED - but that was after 3 treatments with Navelbine. The navelbine made me so sick - 6 weeks on the couch that my onc and I agreed to discontinue. So we will see what the next scan holds.
My son , 25, is back home for a few months. Although my house looks like a frat house, I am embracing the moments as it is not likely I will have this time with him again. Going tot he Azores for a week in February. Laid back vacation with a friend I see much red wine in my future and many laughs
Wishes for only good things for all of us in 2019
Nel
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Hi everyone, have you seen this article?
https://www.breastcancer.org/research-news/5-more-years-of-ais-no-better-than-2-more
I'm thinking of stopping Ai after 7 years. I am so miserable on anastrozole. I think it's affecting me worse than the letrozole. I just had my primary doc checkup and my triglycerides were elevated, cholesterol slightly, my legs and back hurt all the time, and now my shoulders and hands. I see both my oncologist and cardiologist in April. I think the risk now outweighs the benefits. I'm just so tired of being miserable.
Hope you all are doing well. Quaatsi, how are you doing on kadcyla? Nel how did your scans turn out?
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Grandma, so sorry you are not doing well on the anastrozole. I know I have read that some people do better on one type of AI than another, so I was hoping the new one would suit you better. It is hard to imagine continuing to treat something that may be a problem if it interferes with other serious conditions that you know already are a problem, so I can see why you would want to stop taking it. I don't think the oncologists do a great job of telling you all the side effects that can possibly happen. I really do like my oncologist, but I was very surprised when only on my own when googling my trigger thumbs did I find any suggestion that they were caused by the AI. I read the article you sent. Thank you for letting us know about it. I just have some reservations about it for myself because it was a single study that 3/4's of the participants had no lymph node involvement. Since I had the one lymph node, I am a little more leary of a recurrence anyway, and then I also can't really rationalize why 7 years would be better than 5, but no better than 10. So for me, barring any new symptoms or worsening of the symptoms I already have, I am going to try to keep taking them as long as I can.
Hope everyone else is doing well, staying warm, enjoying family and friends. Nel, I know it is good for you to have your son nearby even though it is probably tiring and stressful in another way as well. How were your scans? Q, how is the new treatment going for you? I hope you are doing better. Linda, I'm afraid I have gained almost all of what I lost back again. It is so hard to keep it off, almost harder than it is to lose it in the first place. I hope you are being more successful than I am.
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I would agree with B that these oncologists don’t really tell you what you are in for in terms of side effects. As for me, I realized that I had false assumptions with my new Onc. i really like her and she is good but I have been in a research facility for most of my 32 years of having cancer and when i switched to this place, it was not a resea ch hospital but i did not realize the whole business aspect of it would be that different. It is.
I was told Kadcyla would be “easy” and it was about as hard as anything I have done and certainly NOT palliative. i refused it after two sessions with it. I am not a complainer but my Onc said I was the only person who ever complained about fatigue....hmmmm....
so now I see I need a different approach and won’t give my side effects symptoms until absolutely asked. I am on Tykerb/Xeloda and it is much better. skinfallling apart and get occasional very high fevers but certainly better than the Kadcyla...for me.
Once the tumor marker goes down and the cancer is at least under control better I am going to request or tell them to do a reduced dose. everything for me lasts only a year anyway and there is nothing in the works left for me. so i just want to enjoy the time I have.
and all that said, i am getting ready now to go camping for a week...hope everyone has better weather coming up and enjoys the budding spring.
Q
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Quaatsi, I agree. I want to feel as well as possible with time remaining. I mean I got a second ER + cancer while on an Ai so that made me doubt how well it was working and I've read pulmonary hypertension can be brought on by medication. I looked back through my file and found that my baseline echocardiogram was normal and it wasn't until after I'd been on Ai for about 6 months that I had the pressure go up in my lungs. I know that doesn't mean it was the Ai but what if it is affecting it. Also I know loosing weight and exercising can cut risk of the cancer coming back and could certainly help extend my life from the other problem, and the Ai makes both of those things hard to do. As my onco put it "hard but not impossible". I'm so sorry the kadcyla was so awful. I hope the cancer gets more under control real soon. I hope you enjoy your camping trip. We just had about 3 inches of snow last night and tonight the low is suppose to be 0. So not really thinking spring, yet.
Bahamamom, thanks for your input. It's hard to know what to do. We each know our own situation and have to make decisions accordingly. I was curious, do you happen to know how many studies there were to show 10 years better than 5? I can only find one and it was just with about 1800 women.
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Just thought I would post the latest if anyone is still out there. I saw my Onco. last week. He is offering me tamoxifen now. He said not as effective but I would not have as much pain. But it has it's own side effects. I'm not really interested in taking something not as effective but still side effects. I saw my cardiologist a few days ago. He said aromatase inhibitors not too likely to contribute to pulmonary hypertension and said you have to take a risk to receive benefit. So I'm still stuck in limbo. I found more studies suggesting 10 years better than 5, so I'll continue to take the anastrozole for now and wait and see as more studies conclude. I'm really tired of dealing with all this. I've again lost 12 pounds of the 20 that I had regained. Doing low carb makes me feel better and I don't have as much swelling. My bone density test reveals I do not have osteoporosis. My numbers have not really changed all that much in the 7 years of aromatase inhibitors. Insurance is changing in July, Medicare and a supplement plus drug plan. So that may have a bearing on medications. Not sure. Blood work all good. No outward sign of why I'm so fatigued all the time. Just really, really tired of this. I want to quit.
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Q, I hope you had a great camping trip last month and got some much needed rest and relaxation. The new treatment doesn’t sound very pleasant, but if it is less harsh than the alternative, that is a plus at least. I hope you have more good days than bad ones as you move forward.
Grandma, thanks for keeping us posted on the AI decision. It’s hard to know which is the best path to take. I think the best we can do is be happy with the choices we make regarding our treatment.
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Thanks bahamamom, You're right. We should be happy with the choices we make. Well, I've spent most of the weekend reading studies on extended AI treatment and the newest guide from American Society of Clinical Oncology, discussed these with my daughter and my husband, and have a better understanding of the recommendation for extended treatment so I feel I can now make the best decision for me. I'm stopping treatment at the end of June, unless something big comes along before then. I would stop now, but the cancer center has me starting letrozole in June of 2012, instead of April 1, 2012. So I'm not going to quibble. Now I feel very happy about this decision. If anyone would like the information I've been researching PM me. It will be so good to be free of this. My plan is to concentrate on being healthy and increase the supplements I know to have science behind them that helps to increase the immune system and the bodies own cancer fighting abilities. I won't hesitate to do conventional medicine again, should that become necessary, and I feel that it probably will in the future. But I think I will probably have to deal with cancer again, since I had a new cancer while on letrozole anyway. So I look forward to concentrating on getting well from all this torture we have had to endure since 2011 and concentrating on ways to extend my life with pulmonary hypertension. I will check in from time to time to see how you all are doing and let you know how I am. Thank you all for all the support and kindness you've given me over the years and a safe place to rant. I really care about you, even though we have never met. I think a lot about Beth and Julie and miss them very much and wonder how Julie's kids are and Beth's grandbabies.
Quaatsi, I'm glad you're on a treatment that you can tolerate better and I hope it gives you many years of good quality of life.
Nel - I hope you are still NED. Let us know how you are.
Linda - Hope to hear from you soon. Miss You
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Has anyone had any news about Phyllis?
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I just heard from someone on this site that knew Phyllis. She passed away last December after being in hospice. Her cancer quit responding to treatment. It's just not fair. I've just been sitting here crying not only for Phyllis but for all of us who have to face this horrible disease and loose friends to it. It just never stops. It's too much.
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Grandma, Thanks for letting us know about Phyllis. I just went back through our thread to read some of her posts. My memory is not so good anymore, and it was hard to remember all the things we’ve talked about over the years since our journeys began. So sad every time we hear of one of us passing.
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Phyllis and I often pm'd. I am very sad to hear this. But it does have a weird effect on me--expect I will see her soon. I hope she passed peacefully and with love around her. She was a lovely woman. Q
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Quaatsi - I didn't know her as well as you, just through her posts and she was always upbeat and funny. She was well known on the insomniacs thread. I have never posted there but they seem to be a very encouraging group. The page I found about Phyllis is:
https://community.breastcancer.org/forum/102/topics/767259?page=1495
It's about the 13th post on that page if you want to read about when she went into hospice
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Good evening all,
I have read the thread off and on, but have not posted in sometime. We are almost 8 years out which is amazing and so sad for those we have lost. This disease just stinks all the way around I am glad to be here, but like Grandma and others the continuous treatment has a toll on our bodies. I am continually exhausted, tho I continue to move forward. Travel a bit, working part time, still parenting my young adult children After 6+ years of being diagnosed with metastatic breast cancer, it has been detected someplace other than my adrenal gland It is now in the lymph nodes of my peritoneal cavity. This frightens me, but not much I can do but continue in treatment. I am going to do my will tomorrow. I am finally divorced and can do a will, leaving everything (if anything is left,) to my kids. Their dad will not be able to challenge as we are now divorced. So on I move.
Only good things for all of us. This is a tough road, but on we go I am so grateful for knowing all of you and traveling this road with thsie who get it I will try to stay more active
Nel
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Nel, I am so sorry to hear that the cancer has spread even more. With all the research being done worldwide, why can't they find something to rid us of this horrible disease. It's just so unfair.
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Hi Nel, sounds like we are in similar places. Mine went metastatic 4 years ago. Thought I would be almost gone by now but I am not. Living each day as best I can--some days easier than others. Been through a variety of chemos, cannot handle Herceptin so that is very limiting for me and will be the ultimate demise. Currently on Tykerb/Xeloda and the cancer is spreading albeit slowly and it is a chemo I seem to be able to live with so if it slows it down I accept that.
I stopped working a few years back and now, I just turned 62 last week and will start early Social security--not much but that is ok.
My son has been much of a heartache for years and a month ago, with all his severe disabilities-- he just flew the coop. I cry most night since one love's despite. And I do not know where things will go but he cannot come home-- not a long term viable option for him--maybe a group home where they monitor him taking his medications to control seizures and a few other things. I feel like a limb has been removed from my body. I hope this feeling goes away--I can handle cancer anyway compared to this.
Meanwhile I am still riding and am eager to spend a week on the South Rim of the Grand Canyon riding in June.
I guess this is the most I have shared in ages--hope all are well. Miss Phyl-- she is in a better place I hope.
q
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Quaatsi, You certainly are dealing with heartache. When it comes to our kids, they can really sock it to us. I can only imagine, since I have not dealt with the issues you have with your son. As far as the cancer you and nel are my inspiration and one of the reasons I stayed with the aromatase inhibitors for 2 more years than originally planned. I hope your trip will give you some peace.
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