Starting Chemo in Nov. 2011...anyone else?
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Quaatsi - Do you have the one lesion or are there more? I am in a clinical trial for radiation - people with 1-3 bone mets. Here is a link to a summary of the trial on the M D Anderson website Clinical trials
I hate to say good luck because mets are bad luck but I hope your treatment goes well.
Phyllis
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Hi All, thanks for the words of encouragement. I go through more testing--mostly just to assure the doctor that this isn't a new or different cancer and to confirm what she thinks--gotta get the right target to even try to hit the target I guess.
So, I will be getting radiation--appt next week--maybe one blast, maybe 5 maybe 10. Yes Phyllis it is 1 lesion -on T9--wedged in there and T8 getting some stenosis. Yes, it hurts but no, no unbearable-- except when I ride. Radiation in only palliative-to help with the pain. I hope it works.
I will be doing something systemic--which is what I would have suspected. Herceptin and the new Genentech drug Pertuzamab (that is spelled like this: "lots of money in someone's pocket and out of mine" LOL). No intent to irradicate completely--they think I have been feeling crappy all this time (which I have but didn't want to complain about it on this site since others have it bad or worse) because the cancer never did go away and was looking for a place to show up again.
I will likely be on this combo--if I don't have immunity to Herceptin- until the end--which evidently is sooner rather than later. But I know me-- it will be later. As the words of Monty Python scream in my head: Bring out your dead, bring out your dead --- I am not dead yet!!!
So, I wilt get any replies for a few days cuz guess where I am going? off camping with my horse and my best friend--- watch the sun rise in the desert and then watch it set, all red aglow in fire.
Q
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Quaatsi, I've read good things about pertuzamab. I hope it keeps you stable for many years to come. I was deeply saddened to read that your cancer reared its ugly head again. I hope you can leave all the worries behind and enjoy your camping trip.
Phyllis, that clinical trial sounds interesting. I hope it goes well for you. You've been through so much.
Beth, I read on some of the other threads that you're having a really tough time with your skin mets. It sounds just awful. You had mentioned at one point that you were thinking of getting a second opinion. I think that's a really good idea. Have your doctors considered that you may have shingles along with the skin mets? Please let us know how you're doing.
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bahamamom - I know the stress you're under with your mother. I don't even know the word for that gut wrenching feeling you have when your mom's health is failing. It's a terrible thing to go through. My heart goes out to you.
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Linda, I hope your upcoming tests reveal nothing of consequence. Like you I have that feeling of looking over my shoulder. My onco doesn't do tumor marker tests on early breast cancer patients, I don't really know why. Last time I saw him I mentioned that none of my doctors had done even a blood test for 2 years. His response: I'm not required to.
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Grandma ~ Thanks for your kind words. I haven't had the blood tests yet (my choice to wait until some family events took place) and I am still dreading it. My MO called me last Friday to tell me he would be moving from San Diego to Los Angeles to care for his father. That took me by surprise for sure. I mentioned that I hadn't had the blood tests done yet and he said that if it was causing me too much stress, he would cancel them. So, of course, when he said that I asked him not to cancel because even though half of me doesn't want to know what's going on, the other half does. I believe that only another survivor "gets" this feeling. I will have to decide soon, because my husband is bugging me about it.
Phyllis, Nel & Quaatsi ~ I hope all of you are doing well with your treatments and feeling well. And Quaatsi, I hope you had a wonderful time on your camping trip. There's nothing like getting away from everything familiar and being able to dwell on the beauty around you.
Take care everyone, and as always, thanks for being here to listen!
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Linda, Nel, & Grandma, thank you for the kind words about my mother and her failing health. She did pass a week ago, and I am already missing her a lot.Linda, I would go ahead and get any tests that your doctors offer, more than anything else because they offer so few of them for us. If I have any recurrence, I would want to know at the first sign if at all possible.
Phyllis, Beth, & Nel, you are in my thoughts as you continue your treatments.
Q, I am hopeful that your doctors are choosing the very best treatments for you. I hope that you really enjoyed your "getaway" with your horse.
I see my oncologist next week for a 6 month check up. I am not sure what blood tests she does, but every other time she does just a finger prick for blood counts and then the next time she does a full panel of tests. She has done those for the last 3 years now, every since I finished chemo.
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bahamama- I am so sorry to hear about your Mom. There is no easy way through this - but gradually it dies ease, tho you will always miss her. Almost 9 years out and I still have days whenI forget she is gone and think Oh I have to pick up the phone and tell her about...Love my onc and continue to do well
Hope everyone else is fairing well these end days of winter
Nel
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I am sorry to hear about the loss of your mother Bahamama. i do understand, I think. My mother is dying as well. She is totally incoherent and I cannot even call her on the phone. I went to DC last month to visit her thinking it would be the last time I saw her. She barely recognized me. It was sad and I have prayed (in my style) that she be released from this horrible condition.
A week later, I found out about my recurrence and advanced stage and I saw how different my mother and I are. I have been very pensive the last week and have not posted but I do read everyone's posts (I guess that makes me a lurker, oh my!!!). Death is an odd concept. I am not afraid of it but my mother seems to be. I think I am more afraid of the pain that I am already experiencing with bone mets so I have decided that I need to discipline my thinking so I don't go crazy with something that is in the future, not the present. I try to take each day and each step one at a time. I am finding that each oncologist has a slightly different idea of how this will go and if I count on what one says, another will have a different plan--radiation went from maybe 1 day or 5 days to now a minimum of 3 weeks-- what next? Not going there.... So I am thinking that I shall wait until whatever happens does. I guess this is my coping strategy.
Linda, I hope your tests come out clean--but do get them. Push for your care.
Phyllis thanks for the link. I would like to get in on a trial here where they are basically injecting cement into the area where the lesions removed by radiation. The doc is going on maternity leave in 2 weeks so I willed to hope on that soon.
best to all--Q
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I'm sorry to hear about mothers that are ill. My heart goes out to you. I lost my mother about 7 years ago to lymphoma and then dementia. It's horrible for everyone involved. She and I didn't have the best relationship, but I still miss her.
Q - I hope you can get in!
Phyllis
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bahamamom- I'm so sorry your mother passed away. That's such a big loss. I too lost my mother in 2008 and still miss her. She was always "Mama" to us girls and I learned early on that when I'm alone, if I say "Mama" out loud every day, it's very comforting to me. It takes a long time to learn to live with this loss, but it does get a bit easier as Nel said.
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Thanks to everyone for your comforting posts on the loss of my mother. We will always cherish our "Mama" memories.
Q, I hope that your mother doesn't suffer and that you are comforted by knowing that you went to see her even though she barely recognized you. I spent 4 of the last 9 days of my mother's life with her around the clock, and even though she didn't always know who everyone was (including me), she didn't complain of pain nearly as much when her children and grandchildren visited her in the hospital. Like you, I had accepted that it was her time, knew that there was no chance of recovery, and was prepared to let her go to spare her anymore tests, procedures, and pain. You are in my thoughts!
Nel, I am glad that you are continuing to do well!
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Bahamamom ~ I was so sad to hear of your mom's passing. Even though we know in our head that it's inevitable, our hearts have a hard time accepting the loss. My Mom passed away 15 years ago, and I still wish I could talk to her and hug her one more time. I will keep you in my thoughts and prayers.
I just wanted to let you all know that I have FINALLY scheduled the blood tests. I go next Wednesday, March 18th and am very nervous about hearing the results. I keep telling myself that it's better to know what's going on and keep reminding myself to breathe in and breathe out!
I hope everyone has a great weekend. It's going to be in the 90's here...yuck! Why doesn't this weather thing get that it's only March and not July...lol!
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I'm really getting concerned about Beth. She was posting on the skin mets threads in January and then stopped and hasn't posted since. I hope she's getting the help she needs.
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GrandmaV - I agree about Beth
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Hello to all...I am worried about Beth along with the rest of you. I hope she posts soon. I am keeping positive thoughts that she is just busy with life and will let us know what is going on very soon. Hugs to all of you.
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I am with you, Linda, hoping Beth is just busy these days. I often think of some of the ladies from our group who stopped posting and wonder how they are doing now. But Beth was posting recently, so I agree we should keep her in our thoughts and hopefully we will hear from her soon.
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Bahamamom ~ I also wonder how the rest of our "group" is doing these days. I wish they would visit just so we would know they are OK. We all went through so much together and helped each other so much. For now, I am hoping Beth posts soon and lets us know how she is doing. Happy St. Patrick's Day and hope you find that pot of gold at the end of the rainbow!
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I totally understand those who do not post for awhile. I think we all need "breathers" from the pain of living with cancer. Maybe Beth is just in that place. Plus the truth is we are always connected--no matter what.
Q
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Quaatsi ~ I totally understand what you are saying about not posting for awhile. I went months without posting, but felt drawn back to see how the women (that helped me get through the hardest time in my life) were doing. I, too, believe we are connected in a way that is impossible to explain. I hope you are doing well these days and I am wondering if you got into the trial you mentioned? Take care and keep us posted.
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Some days are just really awful-- today is one of those.
I don't have to deal with the fear of recurrence nor the fear of treatment nor any of it-- its all here-- in my face. I am so tired of all of this-- it is almost exactly 28 years of dealing with cancer-- almost half of my life. I am just tired of the machines and the blood draws and the visits to this doc and that doc and the sitting in the waiting room watching peoples faces, wondering what my son is going to do without me for the rest of his life, what will happen to him with all his disabilities and an emotionally absent father and what will happen to the horse love of my life whose bond is deeply to me? I am just tired of watching the chemo drip inside and the knowing I will spend many days not able to do much of anything but move from one chair to the next. there are some days when I really do just want it over. There is no hope--it is just a matter of time. how do you just live in that? never been much for being someone who just "exists" or "survives"--doesn't feel like much of a good option.
I surely hope tomorrow is not like today....Q
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Q- I can feel the desperation in your latest post. I am so sorry that you are experiencing such hopeless thoughts. As awful as it is to have to worry about the possibility of a recurrence, I am sure it is much worse to know that a recurrence is already here. I wish I had some great advice or encouraging words for you, but I think that only those people who are actually living with distant metastases can truly understand your feelings. At least once a day I think about what I would do if my cancer returns, how I would deal with more treatments, whether or not those treatments would work, what my husband and children would do without me, but for me they are still what ifs. All I can do is listen and let you know that I am here for you. So please feel free to vent anytime. I hope tomorrow brings you peace and strength to cope.
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Quaatsi, Your post was very touching. You have a way with words that convey the feelings that inspire them. Like Bahamamom I don't know what it's like for you, except what you tell us. Your signature line says what kind of person you are. You do "live" everyday of your life. More so than most people. It doesn't seem like it right now to you, but you have a unique perspective that enables you to help others with similar circumstances. Once you find your footing again I believe you will put your skills to work again, to be able to reach out to others who are facing something similar. 28 years is a very long time to be battling this disease and I can see why you're tired of it all. May you find your strength that has served you so well and with that I believe you will find peace. I feel blessed to know you.
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Quaatsi ~ I have no words to ease the pain or understanding of what you have been through. However, I think of the "what ifs" on a daily basis, and I know how brave you have been to deal with all of the mental and physical pain this disease causes. Like the others, I hope you find the inner peace you so deserve. We are all here for you when you need us.
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Thank you all-- It is a bit different to know there is a quickly approaching endpoint-- kinda like you have to clean out the garage of all that stuff you have been saving...for what?... I don't have girls to give a lot of my family heirlooms so they will likely just go to Goodwill. But then there are those memory things--whose memories ? mine...who wants them??? no one. I did tell my son I was going to gather all his childhood pictures so he could keep them or discard them as he wished.
I have huge boxes of my college students' papers that I will discard--law or students cannot come after me once I am gone, right <winkwink> and I am using the things Iike more than the things that are everyday--since everyday is a special day--if I live 2 years or 5-- Of course, there isn't much--kinda did most of this all time anyway--but it does know put a damper on decorating and doing things now for a future that is unlikely. Although I really don't want to leave Michael in a sad, lonely home--it will be bad enough when it is just him and his emotionally absent dad (my emotionally absent husband....should I say anymore??? at least his body is around part of the time). lonely... much more fun to be out with friends and my happy horses, happy son, in the gorgeous desert...speaking of which-- I will take some pain killers and get ready to ride.
thanks for listening-- cannot wait until radiaition is done--hope it eases the pain and make sit worth while.
Q
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Quaatsi ~ It makes me sad to know that you are feeling the way you are, but I understand that these thoughts are perfectly normal for anyone who is facing their mortality. I am hopeful that with ongoing treatment, you can live a long time without a lot of physical pain.
I totally know how you feel about not having a daughter to gift with your cherished heirlooms. I have no children, but I do have nieces that I hope will appreciate the things I leave them when the time comes. If you do not have any relatives that will appreciate your things, do you have friends who would be honored to have the things that have been so important to you? One of my good friends has given me some items from both her mother and her mother-in-law and I have done the same. I feel it is an honor to be entrusted with things that my friend treasured, but wanted to share with me.
I am sad that your husband is not able to be there for you emotionally. From things that you have shared here, I know it is his loss. Finally, I hope that you continue to enjoy what makes you happy. You are so right...we should all live in the now and enjoy who and what we have in our lives each and every day.
Remember that all of us have a bond that has kept us together for almost 4 years, so one of us is here to listen whenever you need to "talk." I will keep positive thoughts that the radiation does it's job and that the time for it to be finished will come quickly. In the meantime, please take care of yourself and I hope you will find something to smile about each and every day.
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Hello Everyone. I am doing well. I had to stay off these boards for a while. I was reading some really depressing things. I was already gone in my eyes anyway and couldn't take anymore.
On February 9, I was admitted to the hospital with sepsis. My body was full of infection. I changed doctors and she got me on the right track. My skin was being treated with medi honey. I was in management mode. Well, the skin around my left implant just started disappearing. It fell out and I had to have surgery for debridement. It has been painful. I see a wound doctor once a week and home health comes to our home three times per week to change the bandages. Right now, I feel really good. I am still on taxol/carboplatin and it seems to still be working.
I'm sorry I didn't get back with anyone but I just couldn't read about skin mets anymore. I know what they are now. No cure but can be managed. I am angry with my first team because they could have been stopped in the beginning with correct treatment but we never know what that is. I am enjoying each day and don't read the boards anymore.
I will try to update with our group more. I miss each of you! We have been through so much together! Hang in there and Blessings to each!
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Beth, it is good to hear from you. It sounds like you have been through so much with the skin mets, and I know that the sores and wounds must be very painful. I understand your need to stay off the boards for awhile. I go through periods where I want information about a particular topic, and then I am glad the boards are there. But I remember being diagnosed in September and then with October being breast cancer awareness month, I could not escape hearing about it no matter where I went, including on a plane-commercials and a flight attendant collecting donations. Sometimes escape is good. But please know that we are here for you when you need to talk or vent. Have a peaceful week.
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Good to hear from you Beth and sad to hear what you have been going through. What an ordeal. I understand that need to just stay away for awhile-- We are here whenever you want. Q
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bethu - so good to hear from you and know you are on the right track. Do what you need to care for yourself and keep us posted as you want. Know we are all here for you as needed .Be well
Nel
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