Bone Mets Thread
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GoKale- I haven't told anyone for years and told very few in the past- occasionally I am tempted as it might explain why I am hesitant to do something- but, mostly I find it makes people uncomfortable or diminishes me- it is rarely helpful, I don't want any victim blaming or stupid advice.
I have loved talking to people who have cancer though- it feels like just another detail in my life when I talk to them.
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I visited a friend last weekend whom I haven't seen in two years, and we never reach out and text or anything. But we have known each other almost 30 years so we go way back, have kids about the same age, etc. She made one little comment that prompted me to tell her about my first diagnosis and my second diagnosis. She was upset with me for not telling her. She would have given me valuable advice, and said that she would have told me to get a mastectomy which would have made all the difference. Well, I doubt that. I know exactly where I went wrong so she might have talked me into taking Tamoxifen so that probably would have at least bought me some time or made all the difference. So I felt bad after telling her. All my calmness, peace, positive outlook took a big punch in the stomach. So now that I am home (she lives in another state) I am trying to get back to a better frame of mind. There is still some good that might come from it because she said she would do some research for me. She has people she is close to who have fought cancer and are doing well now. She is very much an extrovert so there is no telling who she knows.
So that's an example of telling people which didn't go very well. I'll be quiet now, haha!
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GoKale, there have been two studies recently showing *better* OS for lumpectomies vs mastectomy. The previous studies were that there was no advantage to either and outcomes were the same.
So right off the bat she does not know what she's taking about. I would be careful with any of her research.
There is a trick to telling everyone like I do. It is to completely impervious and 100% resistant to their cancer treatment commentary. Unless I'm speaking to a world class researcher or an oncologist, I freeze out anyone trying to tell *me* about this disease because if they're not an oncologist, odds are I know more than they do.
You know more than she does.
I'm confident in what I've done and what I'm doing and will allow nobody to shake that serenity. I worry about a lot of stuff, but not my treatment plan & i work really hard to try & not second guess past decisions.
You did what you thought was best in the past, & now you have assembled a team in whom you have confidence. Let that confidence wrap you in comfort.
Friends can help.in so many ways but sometimes you need boundaries around topics..
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Well said MOTH…well said! 👏🏻👏🏻👏🏻
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Moth - thank you for all of your kind words. They are not just kind, but absolutely right. Thank you!
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Moth- totally agree! A therapist friend said it’s a fine balance between telling enough people to feel supported and the privacy and protection you need. Interestingly my friends who are MDs ( not oncologists) never give me any treatment advice- just listen and support- they know I know more about this particular subject than they do.
I just love interacting with people who don’t know and therefore don’t have an agenda re me one way or the other. Lots of advice makes the advisor feel good and not the receiver.
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100% Moth! I was told by my breast surgeon when I was first diagnosed that mastectomy did not have "better" outcomes than lumpectomy. I did a lumpectomy with no regrets. When my mets were discovered one of the first things my MO said to me was that I can't second guess any decisions in the past because there is just no way to know that having done anything different would have changed the outcome. I had a horrible time on Tamoxifen and only took it about 6 months. My cancer came back within a year of finishing my initial treatment so for my own piece of mind I don't dwell on "what if" because I can't go back and change anything anyway. I try to learn from regrets but not to dwell on them.
Like Moth, most people in my familiar social circles know about my diagnosis. I work in healthcare in a smaller town so hiding my treatment from my coworkers would have been futile. It also serves as a support system. I have an active job and I get help when I need it because people know. My nuclear and extended family is also very supportive. My parents are very active in church and it has helped them to have their social groups there pray for me and support them in this also. One of my big learning experiences was just how much my diagnosis affects my family. I think we are all very individual in how we let the outside world know about treatment. I've gotten a lot of support being open about it but that may not necessarily work well for someone else. I think you just have to do you and work with what's comfortable.
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Good discussion. I also had a lumpectomy and have no regrets. In fact, I have no doubt that a mastectomy would have made zero difference. I had almost 16 years between original diagnosis and MBC. It was the little cells that escaped before treatment that got me!
Like Moth, I have also been completely open with people about my diagnosis. It's just so much easier than trying to worry about "not looking like a cancer patient" as I've continued to work. I hate wigs so they've seen me bald and for quite awhile I was getting pamidronate infusions so they've seen my packing around my little bottle while it slowly infused over a two hour period. Now, port installed, it's going to be pretty obvious that it's no my chest as I don't have much flesh there. Ultimately, I find that folks just move on once they realize you are not going to drop dead at any moment...
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It's been a hectic couple of weeks between medical appointments and the visit of 7 childhood friends who had learned last summer about my diagnosis. So all this discussion about the pros and cons of telling folks has been really helpful and resonant for me. On the whole I felt bathed in love and concern. But also had to let a certain amount of advice roll of my back. It is why I've been a bit more reluctant to let everyone in my everyday life know....these women all live hundreds of miles away and don't know the people I work and socialize with regularly in my current life. I so far have found it most comfortable to keep my condition to a few choice folks, partly because some rather uncomfortable developments in the climate at work, and because I want some places where cancer isn't the focus. However I've wondered sometimes as I find myself struggling a bit to get things done whether it wouldn't be easier to just have it out there so people would realize that I'm not being a jerk, I'm just doing the best I can. So I'm still kind of monitoring and considering whom to tell.
Thanks, Star, for remembering my scan, which zipped by in the midst of a busy week. It was mixed--mostly the areas of active cancer are less active, except in two places where they are more active (though at the same places as before). MO said he couldn't really explain this, and is running some tests for the other things for which there had been trace indications in my diagnostic process (multiple myeloma and lymphoma). This is good as I had asked when we focused on MBC that if in the future there were ambiguous results we not forget about these other possibilities....still, hoping that the tests show nothing new has turned up with them. For the present oncologist wanted to stay the course, and thinks on the whole the scan indicated a good partial response which might get better with more time (he's warned me from the start that this treatment--CDK4/6 inhibitor and AI--works, but slowly). Further good news was oddly ANC was much better this week (over 1.0), though other wbc numbers were a little worse.....staying on Verzenio 150 anyway.
Hoping the pain gets better, Beth, the surgery heals for postive2strong, and new meds are effective for KBL.....and glad you are feeling better, star.
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Hi everyone just wondering if anyone’s skull and neck became numb after top spine / neck radiation. Unless this came from my treatment meds faslodex and kisqali. Can’t see it being the meds. Over half of one side of my skull is numb side head , neck bit of face.
Feeling pretty strange doctor is not sure says we keep eye on it. I am thinking ya we definately keep an eye on it. Scary feeling
Radiation did help otherwise I am able to get up with walker that part is doing goo
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Beth1965 - I recently completed 15 rounds to C1-5. I do not have any numbness but I did lose my tastebuds which my RO was not expecting. Twice she told me that she didn’t expect this SE given the angle of my rads. And when I had t11-l2 radiated by a different RO at a different facility, he expected diarrhea (I had none) and did not expect the esophogitis I got. 🤷♀️ All this to say…side effects seem to be a crap shoot. At least for me that’s the case. I’m no doctor but inyour case, it sounds like they may have damaged a nerve. If that’s true, I’m hoping it heals but nerves are notoriously slow healers.
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RK2020 thanks for the reply. So strange you ended up with unexpected SE and odd too losing tastebuds. I guess your right it does go to show you just never know what you’ll get. I think your right mine skull maybe nerve it would make sense I think it’s the strangest feeling but is not painful.
I didn’t know what esophagitis was until I read about yours I do think I have that I am having such a hard time swallowing almost anything without pain now including water. I guess I won’t be gaining any weight anytime soon which is good since I’m a bit chubby
How long did yours esophagitis last any helpful hints for dealing with not would be appreciated Did you need medicine to clear it up or did it just go away on it’s own or do you still have it. Thanks so much for the info
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Thank you, prairiesea. Going well so far. I’m glad your ANC was up. It’s odd how sometimes that happens. We want to bottle whatever we did that month to make it go up. I hope the active spots start to settle down for you.
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Beth1965 - I had an issue where my esophagus would cramp and constrict and the cramping would work it’s way up my throat. That’s the wrong direction! I think it was 2 weeks before I could start to swallow normally but it still happens to me from time to time. I took nothing for it. I also had a sore throat from my cervical rads. My RO had Walgreens make up a special mixture of lidocaine, maalox and a third ingredient that I don’t remember. I swallowed it and it helped but honestly, I don’t like to take any meds (not that great of a trait when you’re a cancer patient lol) so I took it only when my throat was at its worst. My biggest radiation complaint was the awful taste in my mouth and no taste buds. Way worse then what I experienced with chemo. I finished radiation 3 weeks ago and still can’t taste food but the bitter, soapy, metallic taste is gone. Phew
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Hi Beth, I can't remember where you had radiation but the numbness could be due to inflammation if it's in the neck/head region. There is a lot going on in our necks with very narrow pathways for our nerves to run through. Any swelling and it impacts us which is why I was having horrendous headaches prior to rads.
RK2020, I hear you on the loss of taste. It took six weeks for my sense of taste to return to normal. My RO indicated it can take up to three months! That would have been nasty as I really enjoy food and find it difficult to get myself to eat when everything tastes like cardboard. Proteins were the worst!
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When I had radiation to my C6-T1, I experienced loss of taste and esophagitis. The esophagitis lasted a couple weeks but it was milder than I have heard it could be. I didn’t take anything for the pain (I didn’t want to pay for the liquid they prescribed or swallow it). I found that if I took small bites, chewed really well and leaned forward slightlywhen I swallowed, the discomfort was tolerable. During the last couple days of radiation (I had 5 days in total over a 7 day period), everything started tasting blah. Then some tastes just became off. I never lost my taste completely but many foods tasted like cardboard. I think this lasted 2-3 months. Needless to say, it was a great weight loss plan because I had no interest in eating seconds or snacking throughout the day.
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RK2020. The constricting of the throat sounds painful mines not doing that. I am very much like you someone whom prefers less meds it seems there’s always something I need to take so I hate adding on. I remember getting the horrible taste in mouth when I got chemo and rad treatment before definately not pleasant to go through I feel for you hope it gets back to normal soon for you
Sadie -seems like it probably is nerve thing as yes I was back of neck top of spine area so it sounds likely for me . Did the rads take away the horrendous headaches or you I hope so that sounds bad
ilowen-I have started squirrel bites tuny chews it’s weird how leaning forward helps I guess its just the positioning if body. I am pretty sure I definately won’t be gaining any weight any time soon so that is good. Did you find the rads helped for everything you needed them for
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Hi Beth, yes, the rads got rid of the headaches. Thank goodness! The steroids that my MO prescribed before radiation also helped but then I didn’t sleep for weeks! The steroids also knocked out my taste buds.
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Sadie good to know rads worked and steroids helped. Too bad steroids make it so hard to sleep they can help with so many things I seem to never sleep a wink on those either. Sucks they effected your tastebuds seems like the tastebud thing is something effected more than realized.
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Beth - Yes, the rads definitely helped relieve the pain but it did take awhile to see full results. The rads to my C6-T1 followed surgery to stabilize my C7 which was basically falling apart due to mets. Between the rads and the surgery, I now have no pain in this area.
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Hello everyone. My burning question, if you've had bone mets respond to chemo, did you experience pain while lesions healed?
I progressed on Ibrance and did not respond to Faslodex, so have moved to Xeloda. At the start of Xeloda, CA153 was 458, and I had lesions throughout my thoracic spine, several ribs, and pelvis. Within a week, I had far fewer painful spots and was sure things were going my way. But mid-way into my third week, I began having sharp 10/10 pain in my left chest wall and ribs that lasted about 72 hours, then dissipated. I then developed the same around T6 and my right scapula for about 36 hours. And today, the pain is back in a rib. After the complete first cycle, CA153 had jumped to 749, but MO indicated that the increased CA153 could possibly be attributed to dead cancer cells releasing the marker.
My next bloodwork isn't until 11/8. Of course, I'm desperate to believe that Xeloda is kicking a**, but I don't know if it's even possible. Have any of you had a painful experience with dying cancer cells?
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I can say yes, I did have sharp shooting pains in my bones and in my breast when I started Taxol. Sometimes right in the chair but also,later at home.
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I am having an awful day…. I almost made it to the hospital for my appointment this morning and realized I left my wallet at home. After going back to get it and then driving back to the hospital, I waited 45 min for a 5 min EKG. And now I am in a lot of pain in my right rib cage. Reaching, twisting, turning, and most other movements hurt. Breathing deeply hurts. No grinding and discoloration, but man does it hurt! And of course the doctors office is closed and I don’t want to go to the emergency room. Tylenol has done nothing for the pain. Thankfully tomorrow I talk to palliative care, so maybe I can get some in-case-of-emergency pain pills, cause I definitely need one now. And the pain stresses me out because I’m wondering if it’s more mets. I hurt
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Katyblu,
This is only my opinion, but I would be heading to the ER. This sounds like more than just a little twist the wrong way. I wouldn't wait until tomorrow.
Alternatively, does your doctor's office have an after office phone line? I am assuming that they do. There will be a doctor on call, most likely. You could call that number and describe the pain and ask what they suggest that you do.
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Saw my MO today. During the discussion, we mentioned the Xgeva. She verified I have been on it for 4 years. She said we need to consider changing to every 6 months from every 3 months. She said she does that with those on it 4-5 years.
I thought I heard on a webinar that with Xgeva you cannot go past 3 month dosing. Anyone have any thoughts on this? Should I change to Zometa? I don't want to question my MO, but....
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Candy, I’m not sure about the 3 month dosing but I was on Xgeva every 6 weeks (timed with every other Herceptin infusion), which lasted over 2 years. After that, I was told that I had reached a point of max benefit (years of stable with a single bone met) and it was stopped. About a year 1/2 after that, the bone met woke up. It was radiated as part of a trial and I was back on Xgeva at the same 6 week schedule.
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Candy - my treatment is similar to Mae's. I have been on Xgeva not quite two years. I was told at my two year mark that my MO will likely stop it because it will have reached max benefit. I don't know if dose spacing is individualized or not. It seems like maybe it should be as all of our cancers seem to vary wildly in symptoms and growth patterns even for those of us with the same type.
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katyblu, I'm so sorry you're in pain. I also forgot my purse with my wallet and my cell phone when I went in for my last infusion. I was afraid they wouldn't let me in, but I was able to "confirm" my identity. I asked the infusion nurse to call my husband when I was finished. He waits somewhere else and then waits for my call to pick him up. Kind of a hassle, but it worked.
I hope they give you a better solution to managing your pain. Again, I'm so sorry...
Carol
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candy, it is prolia (denosumab), most MOs do this change after few years bexgeva and/or being stable. Ciaci has recently switched to prolia.There is a thread “prolia shot for increasing osteopenia" not active though..
Edited to add: https://community.breastcancer.org/forum/78/topics/827380?page=19#idx_541
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Well this morning is much better! The pain isn’t anywhere near as bad as yesterday. BevJen, I appreciate your concern. I’m calling my MO first thing this morning to discuss it and to find out who I can call after hours. Sunshine, thanks! I thought about trying to go but it’s a military hospital and even though I was in uniform, they most likely wouldn’t have let me in without my ID. I’m going to have to institute a checklist before I leave the house
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