Bone Mets Thread
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Hello to all,
Bosco, that must have been scary for you. Thinking of you always and praying for a speedy recovery.
Lynne, how are you feeling? And how is dh? Praying he's on the mend from his last hospital visit and that everything is stabilizing.
Patty, I hope you're feeling stronger every day. Sending you hugs!
Myra, yes we miss you! I hope you can check in soon.
Hello to everyone here and hoping you all had a pain free weekend. Hugs, Annie
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Hi all,
Bosco, I had never heard of Pres before either. Must have been so scary for you. Good to hear the nursing staff is treating you well and that scans are stable. Keeping you lifted in my prayers and I'm so glad you checked in.
I followed up with Patty . She's still weak and exhausted and she had home health care for the first time on Friday which she's happy about.
Myra - if you're reading, know you're in my thoughts and sending you big hugs.
Sending hugs all around.
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Hi Annie, For a change I have good news about my DH. Since his stent was changed on Thursday, he has had a dramatic improvement. He is eating normally, feeling good, and really enjoying being at home. I am feeling good about his health for the first time since December. At my dh's suggestion, we even went out for breakfast this morning. You can't imagine how good it felt to see him sitting across from me in the restaurant and riding next to me in the car. He still has to gain back his strength, but so far so good.
I have an appointment with my bs tomorrow, and I plan to discuss the fact that my onc is leaving the cancer center. I respect my bs and would like her input about how I should move forward. Now that things are settling down with my DH, I am worried about how all the additional stress impacted my bc. In addition to the stress, for the past three months my eating habits were awful, I slept very little, and I didn't exercise at all. It probably made no difference at all, but but I always have to worry about something I guess.
I finished scraping the popcorn ceiling in the bathroom. Oh what a mess. It did come off the ceiling cleanly, but cleanup of the floor and walls was not fun. The wallboard tape along the ceiling was compromised by all the moisture and scraping. I tried to repair it but quickly discovered that I have no talent there. Luckily my son came and took off all the tape and replaced it and applied joint compound and sanded it all down. He did a great job that looks professional. Now I just have to paint.
Hugs to everyone,
Lynne
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Hello everyone!
Bosco, thanks for checking in, I'm praying for you!
Patty, keeping you in my prayers also. Hang in there honey, you'll turn a corner soon. And be back to your old sweet self. ((Hugs))
Lynn, such great news!!!! I'm so relieved! And removing popcorn is a horrible mess! We scraped every bedroom and our living room. The family room and master bedroom will remain popcorn, the ceilings are 18 feet high. But we did paint them the same color as the walls, and you hardly notice the popcorn anymore.
I have decided to follow Terres footsteps and sell my house. Going to move out of the city and buy some horse property. My youngest dd is an equestrian. I will need lots of tips on raising chickens. I have lived just outside the city of Denver almost my whole life. Going to make a lifelong dream come true.
I called my mo the other day, to ask about the popping in all of my joints. He said that it wasn't cancer related, but a virus. Sounds like a shot in the dark to me. I have a regular appointment and an infusion on the 18th. I'm already nervous. I'm such a psycho, even a simple tumor marker blood draw scares the s*^t out of me. I just don't want anymore bad news. Some days my emotional well being is teetering on its last thread. Ugh!!! I hate giving cancer any of my time, but it always finds a way to get me down.
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Lynne, I'm so happy that dh has had such a dramatic improvement. Reading your post brought tears to my eyes. It's the simple things in life that can bring us so much pleasure and we take for granted. Today we had brunch at a beautiful restaurant that my youngest dd works at and I thought to myself it doesn't get any better than this. Just being together and sharing good food, and conversation was so special to me. It's something we always do and it means so much to me. You have dealt with alot these past few months and I'm sorry you're having to deal with your onc leaving on top of everything else. It's time for you to focus some energy on yourself, give some of the love that you give to others back to yourself. You've been amazing through all of this! And to attempt scraping a popcorn ceiling, wow I don't think I'd have the strength for that! Hugs, Annie
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Chelle, wow that sounds exciting to make your lifelong dream come true! I'm so happy for you. My eldest dd loves horses and has always wanted to live on a farm. I imagine one day she will! About the popping of your joints, I have that happen to me in a few areas where I have mets. My L5 and my humerus pop all the time, it freeks me out. It only started happening to me after radiation to those areas. Wishing you the best with your infusion and blood draws. I totally understand the anxiety you experience, I get the same way!
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It frustrates me to no end that we write things here, and then if you just touch something the whole thing disappears. I wish BCO would be able to fix it so while we don't press enter our writing does not disappear.
Ok now LindaE first thank you so much for keeping up with Patty for us, home care could be a godsend done right.
Lynne I was writing of all these difficult road you went through. It must have been a blessing in disguise you going for one thing and finding out about the blockage. Good vibes ahead! Agh about having to switch doctors, you are so right, there is so much trust involved and then having to start with someone that does not know your story... Best of luck for you to find someone you like.
Chelle wow, good for you in following your heart. Can't wait to see the pictures of the new place.
DecisionFre so true about UTI, everyone could tell you a story. Why in the world is the medical field not alert to it? My mil was thinking that the people in the newspaper were talking to her, and other things like that, anyways at the ER they did a spinal tap bcs they thought it was something in her head, we told them she was perfectly fine just hours ago, instead of doing a urine test right away, of course it was UTI. Total neglect. Did your family mess with your mom for money reasons? These ppl are dangerous. How are you feeling?
Dee hope you had a nice company.
Terre hope these news will be reality soon.
LovingsL at least you will be able to get targeted treatment for your brother. How is he handling it? It must be very hard.Good luck.
MariaSpain you are welcome.
Good night everyone
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I lose posts all the time, and I am too tired to write them again. I think my mother's sister wanted her out of the way because my Mom knows uncomfortable things about her past and because she and her husband could have trapped my brother to take care of them as they are getting old. They would have forced my brother into getting disability and taken the money. My brother is not eligible for full disability as he has not worked at a job for the past 10 years but he might be able to get SSI due to a limiting medical condition. My mother's sister threatened to go to the bank and take my name off of my mother's bank account. I manage my mother's money. My aunt has always managed to charm her way but she didn't know that no way could she take my name off the bank account unless my mother and I went to the bank together in person, and my mother was trapped in the mental ward. She also told my brother that she was going to come to my house and clean out my mother's room to take her clothing, jewelry, and guitar. The sheriff said maybe she was trying to get my mother to designate her with power of attorney This sent us scrambling for a copy of my brother's financial power of attorney and also to find out what was happening to my mother.
I was in touch yesterday with a well-known, prominent breast surgeon whose husband wants to use something I wrote for a special project. Long story, too off topic. I told this physician about my mother being in the hospital from lung collapse and the DNR and the doctor going on and on about my mother's mbc. This doctor is a kind, caring person and she offered to provide guidance about my mother's situation. She said she was going to call me. I wrote her an email with the background of my mother's case to save her some time but I didn't hear from the doctor. I don't know why she didn't call.
I woke up this morning with a terrible stomach ache. I am worried it might be something serious. I am suddenly not in great shape emotionally or physically. I am fully disabled due to fibromyalgia pain, and I have terrible arthritis pain probably from chronic Lyme disease. Not much the shrink can do to help me. It is as if I am a train that is derailing. My mother's family doctor who holds a high rank at my church would not call me back after my mother's lung collapse. She saw him on February 1 for a skin infection and a cough. He did not detect pneumonia but gave her doxycycline, and her lungs collapsed on February 4. I have texted him a number of times but no reply. I have not blamed him for my mother's lung collapse. Still healing from surgery, my mother has yet to be discharged from the acute care hospital and sent to rehab, and my brother called to say that he had a very bad fall while pumping air in his tires.
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Hello ladies,
Patty and Bosco...sending hugs to you both and wishes for pain free days and the ability to regain strength! Coming up against the inability to keep going when I want to has been a difficult reality to accept. It seems this is something we all are facing more as time goes on. Lynne, so glad your DH is feeling better! Momatt...can't imagine going through this with my daughters...I know she appreciates your advocacy! Decision Freak, so sorry to hear all that you must deal with these days! The hospital horror stories are making me put away the DNR paperwork until it's absolutely time...it's hard to trust healthcare systems and I'm reminded how grateful I am to have a good team. It looks like finding a good doctor for your Mom is a struggle! Going for my monthly check up today...and then it will be time to visit with my older daughter and tuck in the grandkids...
It was great to hear about good test results for many of you! That provides some hope to all of us. Chelle, great news about moving to the country...horses are the best! (Except kitties of course, Terre) And dogs of course!!!
Starting to get my mojo back after returning from Mexico last Tuesday. We met dd and her husband in Cozumel and then went to a time share on Riviera Maya for five days. DD knew I'd been going there for years, but she and her sister evidently didn't expect mom to have picked out an awesome place. When we went to dinner the first night she looked at me and said, "You've totally undersold this place." Isn't it the best when you surprise your kids like that :-) I was able to find out that I can add their names to the deed and they can keep it when the time comes. (My secret mission while I was there.)
They stayed a week and we were able to get them out snorkeling, took them to a Cirque d' Soliel (SP) show and to the Mayan ruins at Tulum. The food was heavenly...fresh lobster and fish tacos. Picked up some new recipes, too. After they returned home, DH and I went diving. 80' for the first dive and 60' for the second. So beautiful under the water... We waited the required 24 hours before flying, but I think the bone mess made nitrogen uptake a bit worse and there was some serious pain in the joints for about four days. Plus swelling...ladies, I joined the cankles club after the flight! I need to think about how much this sort of travel "costs" physically for the future, but it was sure worth it at this point.
I've been reading more about the ketogenic diet and there has been some medical research that shows some comfort benefit, but no reduction in progression. Did any of your doctors provide a cheat sheet on "miracle cures" to save you time and money on books that purport to have helpful tips to stop progression? It's nice to have hope, but facts are valuable too...
Another question is about HRT for the ladies who were in menopause when the DX happened. I'm wondering how many of us took Prempro or some other treatment and ended up with Stage IV. I'll confess, I took a low low dose for 10 years and felt so good that it seemed worth it. Just wondered if others on this board took it as well.
It's good to be home. DH and I have decided to stay in our house rather than sell and move. I spent a year trying to make that move happen and it just didn't, so, it's time to enjoy this home I love and put in a big garden to satisfy my "hippie/back to the land" needs. There will be canning going on this summer.
Thinking of you all and sending hope to those who are hurting.
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DecisionF WOWOW!!!!!!!!!! what can I add to that? Good luck? I do believe that a lot of docs run for their lives when they don't know how to help instead of just having an honest conversation saying maybe you should seek help somewhere else. By not answering phones they are sending you a message, but it's unprofessional and rude. Maybe you could change the locks in mom's house. And i'd think if you guys have POA auntie can't just go and change it. And so it goes. take care of yourself.
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Momallthetime, I agree with you about doctors running for their lives. I've been in an endless cycle of dentists not wanting to touch me with a ten foot pole. Long story short, I've been to three dentists, endodontists and oral surgeons over the past two months. The dentist identified a tooth needing a root canal. The endodontist said no, the tooth cannot endure a root canal it needs extraction. The oral surgeon said it's a perfectly healthy tooth he will not extract. All responses after learning I'm on Xgeva and am faced with the risk of osteonecrosis.
While I appreciate their cautious approach, I'm left with a painful injured tooth and no one wants to help. I know osteonecrosis is awful and most times cannot be reversed, but I'm afraid to leave the tooth as is for fear of an infection with this end result anyway.
Deanna, did you mention you know of a specialist in your area who treats this type of problem? I'm certainly not going to California for treatment but if there's a specialist in my area, I'd seek him out.
Thanks for any input you might have in this regard.
Amy
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Amy, I'm so sorry about your tooth. It's really frustrating when our meds force us to make hard choices we wouldn't have to make otherwise. The ONJ specialist at UCLA is Dr. Tara Aghaloo. I'll PM you her contact info. If you Google her, you'll see that she's authored many research articles on ONJ. I think if you email her, she may be able to recommend someone closer to you. I think Linda Lou was able to do that. I could be wrong, but I'm guessing an ONJ expert might recommend getting off Xgeva and waiting several months, if at all possible, before doing a root canal or an extraction.
I'll catch up with everyone else later. I've been busy with more quasi-normal activities, but extremely fatigued -- both physically and mentally -- as the result of trying to do more. So for now, I'm reading more than posting. Deanna
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Amy, Sorry you are experiencing problems. I did email Dr. Aghaloo and she suggested University of Chicago, Mayo Clinic or UW Madison oral and maxillofacial surgery. She said teaching hospitals are the best. I do not have specific names, as I am not in need of a surgeon at this point. Good luck, and if I find out more, I'll pm you. Hope you get some relief and answers soon.
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Amy, I
'm going to be at the Kellogg Cancer Center in Evanston, IL today. I'll ask my ONC for names of dental specialists in the area and post later with any info I can get for you.
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Hi, everybody, I took a xanax and fell asleep. My apologies. I need to set the record straight for my own conscience. I was feeling unwell, still am, when I wrote the last post, and I didn't provide adequate context. In the Big Book of Good Works, my Mom's family doctor will have many many entries. He has helped our family with my mother's chemo-related and other conditions for nearly a year. I wrote and told him that I was certain the home health nurse did not document Mom's complaint about her lungs because I know his character and know that he would have checked it out if he had been aware. I think he figured that he felt he had no way to help in my mother's current situation. He is a mere mortal though he has most often returned my calls but there have been times when he is unresponsive. I would have felt better if he had called with a few comforting words, but I don't think he was negligent. My mother did have a family doctor previously that was very negligent and I got rid of him. Being physician to an elderly person especially one on powerful chemo for mbc is challenging as her health status changes quickly.
The doctors do go running most often when there are problems in my opinion. The dental problem is is difficult to manage. I have bone loss in the area above my back teeth, and I don't want to take the bone drugs. My bones are in great shape but I may lose bone on the AI drugs. I am not a dentist but if that tooth has problems, I would personally not take a risk in treating it until I got expert opinion and guidance from a dentist that understands the ONJ medical risk. I would imagine that you will have to go off the Xgeva for a while, then have the surgery, then wait to go back on the Xgeva, but you of course need to hear this opinion from a qualified professional.
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Wow ladies, thank you to all who weighed in - I so appreciate it. Now I've got leads for an ONJ specialist so will pursue those. Fortunately I've been off xgeva since December 4, 2015 and will not have another injection until this tooth is resolved one way or another. From the bottom of my heart, thank you thank you. You all are so kind and caring.
XO
Amy
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Good morning ladies,
Deana you were right again just got off the phone with one of the trial nurses and she mentioned for the third time how I have to stop all supplements and vitamins.. For me that's a big one. I understand for the sake of the trial that they want a clean slate so they know what if anything is actually helping. However not so good for me I am concerned because the drugs on the trial SE are lowering of red and white blood cell count along with a plethora of other fun stuff. Something I will have to mull over a bit.
Patty I hope you are doing better we are all thinking of you. I'm imagining you at home with your family as they get you back where you should be.
Amy I'm sorry to hear about your tooth difficulties. I hate going to the dentist just the sound of the drill is enough to send me running. Something we need to do however myself included. I wish you luck in getting it all sorted.
Wendy
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Amy, I hope you are able to resolve the issue with your tooth. Are you having any pain? I think tooth pain is one of the worst I have experienced. Just the thought makes me wince. My onc and dentist made sure everything was taken care of so that my teeth and gums were in really good shape before I started Zometa treatments. I now have cleanings every three months. Overkill? Maybe, but my teeth feel so good when I leave that office.
Wendy, I can understand why they want all supplements stopped for the trial, but it still stinks. Have they told you how they handle the lower blood counts if they occur? Do they add supplements if needed then? Do they have another course of treatments to counteract the drugs' effects? Do they postpone or reduce the trial's medication until the counts rebound? Maybe if you have more information, you will feel more comfortable.
I have made my decision about oncologists. I had appointments with my urologist and my breast surgeon today. Both recommended that I stay with my current oncologist, so I have decided to follow him to his other practice. Both drs have a great deal of respect for him. My BS went so far as to say that she thinks he is the best onc she knows. She also added that his other office offers more clinical trials than the NCI-accredited cancer center I have been going to. She also said he has been very good with me and is excellent following up on everything. My uro said that his practice is affiliated wit Dana Farber, so that is good, too. I feel good about my decision because I am so comfortable with him and confident in him. I have put things in motion by calling his other office.
It is gray and yucky outside today. As you know, yucky is a technical meteorological term. I feel like I need some sunshine to give me energy.
Hugs to everyone.
Lynne
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Yay, Lynne! I was hoping and praying you'd make that very decision, regarding your onc. You made the best choice. It's meteorologically yucky here, too, today, but prepare yourself for gorgeousness tomorrow and Wednesday.
Sending my love and hugs to everyone.
xox,
Valerie
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ChelleG-You know that chicken are a gateway to other barnyard animals! But maybe that's what you want. I had chickens when I lived in the boonies and I loved the fresh eggs. I got mine as chicks and they were raised together and were friends. One turned out to be a rooster and he would attack me with his feet when I entered the coop to get eggs. I had to take a metal trash can lid in with me to fend him off using the lid like a shield. It was funny but tiresome. I gave him away. Finally before we moved back to the city, my husband decided to let them be free range. Uh, well, the coyotes were really happy about that. I couldn't get them back in the coop and they would roost in the trees at night. Eventually they were all gone. Get a chicken tractor maybe.
Very funny video about raising chickens but there are other serious videos about how to raise chickens too. Have fun!
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I've been reading your posts since my bone met diagnosis on Feb 17 and think I posted once to introduce myself. Frankly, I haven't been active as it's been a slow and hard process getting used to this new normal. But I'm coming around and look forward to getting to know you better. You're really a wonderful source of support for one another and so knowledgeable about the treatment options.
I wanted to ask for your input if you don't mind helping a newbie out. I meet with my MO on Wednesday, March 9 during my next chemo infusion and it'll be the first time I've seen him since he let me know about the mets. I've come up with a list of questions and would appreciate any suggestions for what else I should be asking or hearing if any of my questions are ridiculous. Thanks in advance for anything you can offer.
A little background: We started chemo (taxotere and cytoxan) before we had confirmation of the bone mets and I'm about to go in for round 4 of 6. Overall, I've been tolerating it extremely well. I had a breast MRI last week and will learn how well the cancer in that area is responding to the chemo. He said we'd continue on the plan to do a bilateral mastectomy and radiation, then the hormone therapy. The bone mets were confirmed through a hip biopsy, but unfortunately they didn't get enough sample to confirm the receptor status (I'm still peeved about that). He said he would treat it the same as what's in my breast because apparently only 1% of mets change receptor status.
My questions:
1. I've seen studies for Ogliometastatic patients that talk of curative effect. "Metastatic breast cancer carries a poor prognosis, and most systemic treatments for metastatic disease aim to slow its progression rather than to cure it. In a select group of patients, however, systemic treatment combined with definitive local treatment of the metastatic tumors can offer long-term progression-free survival—and perhaps a cure." Eric Strom - https://www.mdanderson.org/publications/oncolog/au...
- Question for this group: do you have experience with doing rads to the bones in the early stage of treatment vs. holding off on this course for use to manage pain?
2. Receptor info for bone met: Are we making a big mistake not getting the receptor info on the bone lesions? Should we be doing a bone scan or PET SCAN? Timing?
3. What should I be doing if anything to strengthen my bones?
4. When will we start hormonal therapy? What will it be? Any concern that I'm still menstruating (even during chemo)?
- Question for this group: any ideas what the first line of therapy is likely to be? Tamoxifan?
Any other advice you have as I start out on this would be deeply appreciated. Thanks so much.
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Hi Jennifer,
I don't post on this thread much because I live a mostly normal, pain free life (save for Femara se's, which are manegeable for me), but I can answer some of your questions. Do remember that both patients and doctors may have variations in their disease as doctors have variations prescribed in treatment.
1. I've seen studies for Ogliometastatic patients that talk of curative effect. "Metastatic breast cancer carries a poor prognosis, and most systemic treatments for metastatic disease aim to slow its progression rather than to cure it. In a select group of patients, however, systemic treatment combined with definitive local treatment of the metastatic tumors can offer long-term progression-free survival—and perhaps a cure." Eric Strom - https://www.mdanderson.org/publications/oncolog/au...
- Question for this group: do you have experience with doing rads to the bones in the early stage of treatment vs. holding off on this course for use to manage pain
I had a 2 cm met to my upper femur but had no pain/symptoms. I had radiation to the met with curative intent, shortly after it's discovery. Sole intent was to render the met necrotic and it did!
2. Receptor info for bone met: Are we making a big mistake not getting the receptor info on the bone lesions? Should we be doing a bone scan or PET SCAN? Timing?
My bone biopsy did yield hormone receptor status, thus my treatment was based on that. The met was discovered via PET scan. I continue to have PET scans at regular intervals.
3. What should I be doing if anything to strengthen my bones?
Have you been offered any of the bone strengtheners such as Zometa or Xgeva? I was on an older variation of these drugs for two years. I watch my calcium intake take Vitamin D3 and lead an active life. I hope it helps!
4. When will we start hormonal therapy? What will it be? Any concern that I'm still menstruating (even during chemo)?
I have never had chemo, only hormonal therapy. I was post-menopausal when dx'ed so went straight to the aromatase inhibitors. Currently on Femara.
- Question for this group: any ideas what the first line of therapy is likely to be? Tamoxifen
Tamoxifen is certainly possible. Some go for ovarian suppression and then go on an AI. Some even have surgery to render them menopausal.
The beginning is tough and we all seem to have a different course to run. I am fast closing in on 5 years with no progression and only minor effects on my regular life. How? Why? I don't think anyone really knows as I do no stringent diets or anything too extreme. I lead a healthy lifestyle prior to dx and haven't changed much. I do know that my met, like my breast tumor, is a lazy grade 1. That's the closest I can guess as to why I've done so well or maybe it's plain old luck. Take care
Caryn
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Jennifer:
I'm sorry to hear of your diagnosis. I'm 7 months in and still mostly reeling from the news. My MO is amazing and her personality has made this so much easier. I haven't had surgery or radiation. My mets are so significant that targeting them with curative intent through radiation isn't feasible. They have, however, stopped growing in number and are now sclerotic. I did 6 rounds of Taxotere with Herceptin and Perjeta. My tumor markers dropped significantly (to 40) so my MO stopped the Taxotere and started me on Tamoxifen. I continued to have a good response and now my tumor markers are holding at 20. I have no pain, even though my mets are in pretty much every bone and I do have several fractures. I was started on Xgeva right away and it seems to be helping. My period stopped with chemo but returned after stopping taxotere, so I started Lupron last week. I haven't had a breast biopsy. I had a bone marrow biopsy from a fractured vertebrae that was found to be triple positive breast cancer cells. All of my treatment is based on that. My MO did say that if it had been anything but triple positive they would have done a breast biopsy.
I feel like I'm in a really good place physically, but have pushed most of the emotional stuff out of the way and am only just starting to deal with it.
Please reach out if there's anything more specific you'd like to know. I'm still learning about this disease day by day. These women are a tremendous support.
Rachel
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welcome Jen
You have a good set of questions. I would just wonder if they have talked about removing ovaries to reduce estrogen. There are also some chemical options to turning off ovaries. Sorry if I risked overwhelming you with this.
Lynn so happy for your good news and description of you and st enjoying breakfast.
Katharyn I would love to see pics of your wonderful trip.
Bosco what a frightening experience. I am sending you thoughts of healing.
I continue to really struggle with energy and think it partially due to worring about my mom. I am feeling overwhelmed and feel like I get to a place where I take my husband for granted any advice?
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Mary, I have no advice for you, but I can understand why your energy level is low. You have a lot of stress in your life right now, and it is emotionally exhausting. It is normal to worry about your mom when she is in hospice. I am sure you are full of sadness and feel a bit helpless because there is nothing you can do to fix things. In addition, if I remember correctly, you are worried about your son as well as your cousin's husband (?). Add to that your own MBC dx and symptoms, and it is amazing that you are doing as well as you are. We are only human, and we cope as well as we can, but we have our limits. If you are taking your husband for granted, you are not alone. It is easy for us to take people we love most for granted. I think we know that they will always be there even when we don't treat them as well as we should. The good news is that you are aware of what you are doing. What if you plan a special evening for just the two of you.? You could have a special dinner together, watch a movie, just sit and talk, anything special will do. Give him a big hug and tell him how you feel. Explain why you are preoccupied and exhausted. He just might understand and want to help in any way he can.
I hope things are better for you soon. You will be in my prayers. (((Hugs))).
Lynne
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Mary oh it hurts so much to hear your pain. As Lynne said you are Human. You are not Tin Man. So much stress filled with worry. So you had a close relationship to mom? Are you able to speak with her. For me, I was extremely close to my mom. She really was a ray of sun to everyone. I sat with her a lot, just spending time together, sometimes watching Youtube videos together (she had no patient at the end to watch full movies), and just making her comfortable. Of course, we made sure the nurses from Hospice treated her with the respect she deserved, and they did, making sure she is pain free as possible. Hugged her a lot. I was in peace when she passed. Sometimes if you could just be there and not do anything. Lynne gave you very good advice re- your hubby. He knows what you are going through anyway. If you let him know your fears and hope it will become a sharing experience, he might need it too. My husband was so close to mom, he needed to be consoled as well. We do try to keep her memories with smiles, I know it's sound corny but it's so.Oh please accept my warm hugs, and do let us know how we could be of help to you.
Amy, it's so touching how everyone here rallies to help asap. In no time, you had Deanna willing to give you her Onco info to help you. And lwrite willing to shake the barn for you, Lindalou keeping the door open if you need more help. You can't be that. Best of luck,
Ellelou oh my gosh, you know how much people pay for this type of therapy?? Loved it!! Thank you so much. So apropos also.
Valerie, hi !
Lynne such a relief for you to have made the decision. If you could make the trip it seems very smart to be with someone that cares. Good for you.
Wendy so what's gonna be, give up the xtras and go for it? Or… How are you doing?
Jensgothis it's so overwhelming this stage. I will let the ladies help you here, but i could say that def shutting down the estrogen I w ould htink should be some type of priority. My daughter was only in her 20's she had oophorectomy, it helped her a lot to choose treatments also, if you would be ready for it of course. But they should be recommending Lupron or something to you. Regarding PET or bone scan, I am still trying to figure it out. But she is been having PET/CT. (In her case being that her mets are so extensive she has them quite often) The best thing as everyone here will tell you is trusting your Oncologist. But even so, remember you could still have your opinion or and ask questions.,
Tomorrow we'll see the blood count again for Dani, she is having some se's from Ibrance, I hope she is able to handle it.
Kisses and warm hugs
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Kathryn
According to my levels I was in menopause and had bio identicle hormone pellets 10 months prior to DX. I am also ER +PR+ Her2-. Ibrance/ letrozole/Lupron. Estrogen still high and last scans show progression. Onc suggested Tamoxifen or Genom trial. Need bone biopsy and off therapy for 5 weeks if I do trial. We shall see if the risk is worth it
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Hi, everybody, it is very uplifting to see how you help each other. I have written quite a few threads addressing specific people and lost what I wrote. BCO doesn't seem able to stop whatever happens when we lose a post.
We finally sprung my mother from jail (the acute care hospital) where the doctor got stuck on my Mom's mbc when he was supposed to be treating her for lung collapse. My Mom is now at a very good rehabilitation hospital where they will treat her like a woman who is living, not dying. I bought her exercise clothes and shoes last week along with new little night gowns. I hope the doctor in charge can figure out a way to get rid of the 50 pounds of water weight my mother is carrying.
I am in a state of extreme stress and exhaustion and unable to do much at all except watch television and seek to bolster my faith in a dark time. I am worried about my Mom and the road that lies ahead. I hope the doctor at the rehab facility does not take my Mom off letrazole as it is the only therapy right now that stands between her and the mbc. And, as I have said, we don't know if the oncologist will want to give my Mom chemo again.
I have to give my mother credit for her amazing strength. When the doctors said she most likely had pneumonia, my friends started trying to prepare me for the last days of my mother's life. Instead, my Mom pulled through lung collapse and was weaned from a large oxygen machine. Now, she is on a small oxygen machine that she may need for the rest of her life but I am not sure. I hope the rehabilitation staff can rouse my mother to life again.
I guess we are supposed to talk about ourselves on another thread. I am dealing with another scary reproductive problem that has not been resolved, and I am scared. That is all I will say. I hope I can pull myself together to be strong for my Mom. It is not optional to break down!
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DecisionFreak,
You sound like an amazingly strong woman yourself but I hear you when you worry about your own health. Worrying about your mother only adds stress to what you've got on your shoulders. I'm happy to know your brother is there for your mom. Perhaps you can shift some of your moms needs to him for now so you can take care of you.
You'll be of no use to your mom if you end up with a catastrophic illness so please do whatever r you need to to get better.
Just know that you've got a world of women here lifting you up in thoughts, prayers and virtual hugs.
Amy
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Hi Amy,
There is a dedicated oncology dental office at Northshore in Evanston Illinois at Kellogg Cancer Center. One of their dentists started her own practice in Evanston. The note I received from my onc is below:
We often send patients that are having lots of issues with mouth sores or need a lot of dental work done while on treatment to Dr. Leslie Reeder, who used to be located here at Evanston hospital, but now has a private practice in downtown Evanston. Her contact info is:
Dr. Leslie Reeder
636 Church St, Evanston
847-475-7754, call for appointment. Initial visit will be approximately 2 hours long.Hope this helps!
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