Bone Mets Thread
Comments
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Oh, Patty. I'm glad you're feeling better, but can't believe your onc beat a hasty retreat because he was uncomfortable! At least he didn't pass out as he was talking to you, which sounds entirely possible from your description of things!
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HI, just a thing Purplegurll
When therapy is working at the beggining mets can cause more pain
In Spanish it is callled "flash or flame" effect. Sorry but I don't know the medical English translation of it.
It something related with antagonist effect of therapy. Even the bone reconstruction can cause pain at the first stage.
I have some info about it but it is in Spanish,sorry. So please try not to worry and ask your Doctor who will give you accurate information about it
Hope it helps and keep figthing!!!!
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Maria,
Thank you. I understand exactly what you mean. That makes me feel so much better!
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HI, again Purplegurll
Just one thing If it helps. My mother is on chemotherapy too also bone mets ( with hormonal therapy in her case, so on this side it is different than your case) . The thing is that now she feels much better(far from being perfect but much better). I can't tell you what is working (chemo, hormonal therapy or zometa) but a month ago she could not wake up from bed, and now with some pain she can do it perfectly.
Some weeks after she started chemo I thought therapy was doing nothing becasue she felt worse, with more pain but now I can see something is working: Took some time but she feels better.
Every case is different but please don give up.
You now better than me this is a long road, ups and downs, but you don't have to loose the positive actitude
Kisses from Spain
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Hello dlb823
Thanks so much for reading all the long stories and the warm welcome. Unfortunately my moms neurophaty will come back (she is again on chemotherapy) so I'll take into account your info. She just started again chemo some weeks ago
So glad I found this place to get advice and try to help as fas as we can!!!!
All the best
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good morning ladies
Deanna. Mo passing out , too funny. Uncomfortable or not we will talk about it today. Period.
Still in the hospital. Was just talking to hosoitalist Dr who was shocked at my DNR. First thing i tell them every time I come the chaplain here helped me with it s couple of months ago. Hegsvr me a copy and put a copy on my hosp records. 2nd. I am positive that this time I told her Dr and nurses and then again to charge nurse who got me in a room . Hosp dr said my decision but he strongly urges me to reconsider. Since ubam so young and we have so many more tx options. I explained quality of life is gone. My life is on the couch, bed or recliner. Dr says still alive though and tr are making new discoveries all the time. Alive... Hmm if alive means a heartbeat and pulse yes. alive to me means living not just surviving. So I am not changing my decision. Hosp vdr said he asked 2 more drs to stop by today to try to explain it to me better thatbtere is still alot of hope for me. . Wth? Explain what? It is my choice ! Cancer has taken control over so much of my life but tis is one thing that is totally MY decision grr. Guess I am getting grumpy for being in here so long.
Hugs al around
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Babs I will be trying out that trick today with the bone scan. The waiting is the worst the oncologist said two weeks I'm like no way. This squeaky wheel will not wait two weeks.
Patty yeah you kept some food down , good luck cornering your MO they can be slippery little devils.
Maria your words on being positive are very helpful. It's hard and sometimes I think I have no reserves left.
So yesterday my little sister had to have another mammogram. She has been my rock through this hell and watched first hand how horrible this all is. Now they want to do a biopsy on one of two lumps they found. I don't want her going through this hell too. My sadness knows no bounds at present. Have any of you woman done the gene test? My onc didn't want to do it when I asked but I may push it now. So busy day today . I wish all you ladies a wonderful day. I keep thinking of Terra's snoopy meme " it will not be this day".
Wendy
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Wendy. Will be praying for your sis today really great y'all are there for each other
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off topic but dh found this wasp nest on our shed between the siding and wall. Biggest one I have ever seen glad I am not the man snd don't have to deal with it.
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Wendy, my mother died of cancer in her mid 60's 25 years ago. When it was diagnosed it was a cancer that had spread to the bones with an unknown primary. At the time breast or lung were suspect. Cancer can stay microscopic where it originated and spread which was her situation. My youngest sister had a bmx 4 years ago. Stage 2. I was diagnosed this year most likely stage 4 out of the gate. I had the Brcatest as did my stage 2 sister. Both negative. When I went for the genetic counseling they explained there are most likely unknown genes that have not been identified that put you at risk. They felt my family was a good example of that. 3 cases Brca negative. Another sister had a prophylactic mastectomy this year when oncologist told her she had a 65% chance of breast cancer with the family history. You just never know I guess.
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Wendy,
I agree with mab60 on as yet unknown genes. At the very least, you might want to see a genetic counselor who can thoroughly go over family history to determine if BRCA and a few newer gene tests would be appropriate for you. I have some family history of bc and am an Ashkenazi Jew, so I was definitely in line for gene testing, but everything was negative.
Patty, you sound quite miserable. I hope things level off soon and that your discussions with doctors become more productive.
Regards to all.
Caryn
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Patty: I wish all of these doctors would channel their energy against the DNR to getting to the root of why you keep getting so sick, thus so gravely limiting your quality of life. I'm so frustrated for you.
Babs, Wendy, Deanna: thinking of all of you with scans or waiting for results. I will be scanned next week. My tumor markers are 20 and 20, so we are hoping the scans correlate. I was re-reading my October bone scan and it was very sobering. It pretty much says everything but my left pinkie toe is affected.
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Wendy, I'm so sorry you and your sister have to go through this.
Patty, I have had DNR for quite some time. I am behind you for what ever decision you make. Hoping you are able to talk candidly with your MO today without him bailing on you. Oh the wasp nest looks nasty. Glad you can eat something.
I too am negative for BRCA 1&2 and also negative for PALB. My mother, sister, grandmother, great Aunt, and 3 men on my mother's side all had breast cancer. My mother and sister had metastasis. My niece called me crying last night as she too is heading for a biopsy tomorrow. I'm driving down to be with her. The last genetic counselor I spoke to said clearly we all have some genetic mutation. My dh has prostate cancer and I often fear what my son will face with all the cancer in my family.
Thinking of all who are waiting for scans and results.
I have a question.... how many of you get to review and see your scans? I'm very fortunate that my MO and RO always view them with me. I get to ask lots of questions and have them zero in on places that I want more clarification. In fact my MO asks me what area I need to view more specifically. I also get results the same day. However, the radiologist report isn't always available that day and then of course I have more questions...
Best to all of you.
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Patty, I am so worried about you that I couldn't sleep last night. I don't want you to feel this way when there are so many options left. I know you would not be saying this if you didn't feel so poorly right now. I know that feeling, so I sympathize with you.
Once all your test results are in maybe they can figure out exactly why you are getting sick and are so weak. I don't know what state you live in or where your MO is from, but I am a big advocate to getting to a MO that specializes in only BC. With that being said, I got screwed after being in remission for 18 years because my local onco dropped the ball and let me go from July -Oct with a confirmed scan of a lytic lesion in my ilium stalling for a biopsy of it. I packed up ditched her and went to a different MO until I could get my insurance changed to cover me at Dana Farber at the first of this year. I had a second opinion from Dana in Oct. after the bone biopsy finally was done. The difference between Dana Farber and local onc is treatment plan. Local didn't even suggest Ibrance/letrozole because my bone biopsy was er pr neg but my first cancer was positive. Dana said it would be unusual that it was negative giving the properties of the biopsy result so they are treating as if it is. My Dec. scans were stable and I will find out more in April. They also do not use pet scans at all. They follow me only with Bone scan and CT scans. The jury is still out if it is even working for me.
Just know I am praying for you and care.
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Lindalou I have not seen one scan. It would be a dream for me to have a doctor actually explaining it to me like with some of you ladies. So I spent yesterday morning battling the admin side of cancer. Went to five different offices now it will all be mailed to me on a disc. So I can sit on my computer trying to figure it out on my own. Yeah free health care?
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Lindalou- I am Braca neg too, but we did a panel in 2009 and MO just had me do another one 2 weeks ago. More things to look for since 2009 other than Braca. I have 3 daughters that all have had the latest testing. Once my new panel comes back the GC at Dana is going to sit down with us. So far my daughters results show nothing alarming except they carry a variance for a colon cancer that is prominent in the Jewish decent. We are not of Jewish decent and the variance was weak.
My maternal Grandmother died in 1960 from bone cancer. At that time they did not have a primary but looking back it had to be breast. My mom is 85 and no cancer for her or my sister. On my dad's side there is no breast cancer. My cancer is lobular and I never had a mastectomy and when it came back after 18 years it came back only in my bones not my breast. Lobular is famous for going to the bones.
I will keep everyone posted on the genetic testing results soon. I should hear in a couple more weeks.
Carol
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Lindalou, it's mostly my Ortho that shows me imaging and he is patient with me! MO will sometimes if there are changes. I hope your niece's results are B9.
Wendy, I know what you mean about bureaucracy. The images and reports can come in handy if you get a second opinion at some point. Hoping your sister's biopsy is B9 as well. I didn't have genetic testing and it was never brought up with docs. Other than myself, only my father's sister had BC.
I often wonder about the DNR. My mother had given explicit instructions for a DNR and yet the hospital did not respect it and proceeded to resuscitate her at 90 years and in bad shape. Recently, a woman at my hospital was in palliative/hospice care and choked on her food really badly and the docs did not respect her request for DNR. Judgment call by the docs?! Do I have to have DNR tattooed on my chest when I make my decision!
Patty - I hope your discussion with the docs today is conclusive.
Bosco, thinking of you. How are you today?
Sending hugs all around.
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Patty, I am not in your shoes. None of us are. However, I just have to say that hearing the complete difference in your tone when you are out of the hospital and doing relatively well vs. when you have these horrible, horrible bouts of severe gastro distress is like night and day. So I don't agree with the DNR stuff either, although God knows any of us would probably feel that way if we had vomited as much as you have.
The way I see it is -- unless they've found something mbc related that you haven't shared with us that is causing these bouts, then the vomiting and your QOL issue is NOT due to mbc. Yes, you may be weaker and unable to fight off whatever this other thing is, but your docs (IMO) are responsible for not figuring out what the heck is going on, and quite frankly, I'm surprised they haven't transferred you to a bigger, better equipped facility, rather than believing and letting you believe that what you're going through is normal for mbc. As I've said before, but now especially knowing you are struggling to the point of wanting a DNR, is that what you are experiencing is nothing like any of the typical mbc declines we sadly see in on BCO or in real life, which are most often due to organ failure either from the disease or chemo that do not suddenly get better with long periods in between episodes. I just don't believe mbc acts like that, which is why I have a very hard time with a DNR at this point.
Okay, I've put it out there and I promise not to bring it up ever again. But if you give up -- unless someone can prove to me it was due to mbc -- I will never ever believe it was anything other than docs not getting to the bottom of this intermittent intestinal illness, which I still believe is something that can be treated.
I hope you won't be upset with me for stating my beliefs, but it upsets me to think that what you are going through has not been resolved when I think it can be, and that you are at the point where a DNR seems reasonable when these bouts have never actually been given a dx and assumed to be due to your mbc. Yes, I see the relationship due to a weakened immune system, but I don't believe they're doing enough to figure out what keeps attacking you.
JMO, offered with abundant love and concern for you.
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I have had DNR now for 12 years, way before MBC. I won't go into the personal reasons here, but is was life changing for me and I now have a DNR in place.
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Patty,
I don't want to upset you, but I hope you will consider what Deanna wrote. Ultimately, all decisions are yours, of course, and I only wish you the best
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Good morning all!
Patty, I have to agree with Deanna that this thing that you have doesn't appear to have anything to do with MBC, there has to be something else going on... and I hope they find it soon. The difference in your postings when you are feeling pretty good & then when you are in the hospital is night & day. ((hugs to you)) and that wasps' nest, wow!
Wendy, I had genetic testing because I was under 50 with bilateral BC, but showed negative. It did take quite a while as they have to send it to the US. I don't get copies of the scans, but have seen some of them with my PCP. Honestly I wouldn't really know what I was looking at, so I'm just as happy to have them explained to me. My MO does an appallingly bad job of explaining, but RO & PCP are both great at it. Best wishes for good results for your sister.
About DNR's, when I was going thru chemo & had to be rushed to emerg, the hospitalist urged me to sign a DNR & I did because I was so sick at the time & wondered what she knew that I didn't. At some point I would probably sign one, but now is not the right time.
So on that lovely note, I will bid you all a lovely day. As Lindalou says, I'm heading out to the garden for some "dirt therapy" It's a lovely sunny day & the crocuses,daffodils & hellebores are up. cheers, Dee
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Patty, I know you don't know me but my heart aches and breaks for you. Is there someone that could arrange for your transfer to a teaching hospital that is connected with an NCI Comprehensive Cancer Care Treatment Center? In many cases, you can be transported by air or by ground ambulance. I would do this transfer now while you are still in the hospital.
I am reading about the awful care, neglect, and medical indifference many of you face. You have a potent weapon, and that is the Patient Bill of Rights. Read it. Print it out and carry it with you everywhere. It is an official document that carries weight. I recently tried to get my Mother's NP on the phone. When the oncology practice made an effort to force me to talk to the chemo nurse instead, I said she (the chemo nurse) was violating my mother's Patient Bill of Rights. I was forwarded immediately to the NP.
My mother was vomiting with a body temp of 101.6. Usually, we give my Mom Tylenol and the temp goes down. I was out of town on post ops, and I told my brother to take my Mom to the ER. Now, the doctor is saying that whatever made her longs collapse was not the chemo. Her blood counts were always great while she was on KADCYLA. The doctor is saying my mother's lung collapsed due to an opportunistic infection. It seems obvious to me that opportunistic infections thrive when the immune system is compromised. KADCYLA compromises the immune system. I want to see my mother's medical records and look at the white blood cell counts. I don't know if the doctor is correct or not.
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I know I promised not to comment again, but I have to say that DecisionFreak's suggestions are absolute genius, Patty, and I hope you will take them to heart.
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patty, I post so infrequently that you don't know me but I am on these threads daily and feel I know all of y'all well. Your recent posts worry me. I know you are feeling badly so it is understandable. Have they review d the results of your recent brain mri with you yet? Have you had a gi scope recently?
Mary Anne
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I'm at work so can't read all that's been written but jumping in for a minute
Got the scan results this AM. Yes I'm a pest so I get them sooner
Better than stable. Bone mets stable. Liver and thoracic all decreased significantly in size. Finally a good result! Xelodais working!!!
Babs
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Oh, Babs, wonderful, wonderful news!!!!!!!! I literally felt a tingle of relief reading your post. So happy for you!
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Babs: I am so happy for you. Thanks for sharing right away!
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Babs - I am just so very happy to read your results. The exception to the rule... Awesome!
Decisionfreak - You made a very good point regarding Patty being transferred to another facility.
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Babs woot woot!! Ty for sharing I have been praying for you.
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Maybe there are exceptions, but the posts I have read show evidence those who participate on this thread are inspired by the spirit of pure love for each other. You humble me, and I weep for your suffering. My own breast cancer diagnosis turned me rapidly from being a patient into a breast cancer warrior and advocate. I emerged from collaboration with my medical team cancer free with a negative path report and no rads, but it required changing doctors; moving my care from local physicians to highly qualified experts at an NCI designated cancer care treatment center; and getting a famous breast surgeon involved in my case. I have and will continue to advocate for my 85-year old mother who has mbc in her liver and her bones until she says she is ready to go. I am not a doctor nor do I have deep or wide knowledge of any aspect of breast cancer. I am a former health writer and p.r. professional, disabled at this time, who is an expert writer and researcher in the health and medical literature. Please PM me if I can provide assistance or provide moral support. If I have the energy and time, I will try to help.
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