Bone Mets Thread
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Pajim, our fingers still do the walking, they're just texting now! I see you and a couple others have been on Faslodex, is that an aromatase inhibitor like Femara?
Mary LW and ForestDweller, I am going in first thing in the morning for the port and I'm hoping I will have a chance to talk to them about anesthesia. I get SO sick after general anesthesia, and then usually get a migraine to boot. Sounds like you both had good results without it. Twilight sleep sounds good to me...I am turning right around and having the bone biopsy on Wednesday. Too bad I can't just stay asleep for a few days!
One thing I am kind of confused about when it comes to BC spreading is: If our lymph nodes are negative, how does the cancer spread? Is it just negative when they initially check it and then the cancer spreads through the lymph system? Or was it there all along? I had suspicious nodules in my lungs (but no uptake with a pet scan) and my tumor marker number never went all the way down to normal, and yet my lymph nodes were negative. And now here we are, stage IV!
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Sadly, bc spreads through the bloodstream as well. Unlike lymph nodes, it can't be readily detected.
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Lindatwo, I was node negative in 2008 and am Stage IV now. Recently read a statistic that 70 percent of women who had a negative sentinel-node biopsy had cancer return within 5 years, indicating that the biopsy is really not a very useful predictive tool. I was led to believe by doctors that negative nodes were something to be reassured by. I still don't understand the "lymph or blood" explanation of cancer metastases; it seems so peculiar. If it spread through blood, then why was my mets not spread throughout my circulatory system? (Perhaps someone here knows.) Western medicine seems much more knowledgable about blood system than lymph when it comes to disease. The lymph system contains more fluid than our blood system. So many mysteries with cancer yet to be solved.
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Lindatwo and TaheelMichelle, when your tumor is growing it can establish a blood supply and when this happens the cancer cells can travel through your blood stream......what the doc call lymphovascular system and if that has happened it usually says on your path report LVI involvement. Usually when this has happened the docs rely on chemo to clean up those errant cells but sometimes the odd cell escapes.........next step, stage IV.
The time frame for that to happen can be a few months to almost a life time and sometimes never. This is where the anomalies of cancer confound even the researchers.
Love n hugs. Chrissy0 -
http://www.youtube.com/watch?v=rrMq8uA_6iA
This is an interesting animation of how metastasis occurs through the bloodstream. There are probably a hundred other things going on but these are the basics.
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20130501 regarding the side effects of radiation...
I just finished 10 treatments to my upper right femur (at the hip). My RO told me that I might experience some skin issues (reddening, discolouration), pain flare up and in some cases leg swelling caused by lymph damage from the radiation.
So far all I've had is a bit of pain in the area radiated (feels like a hot poker) but nothing that a couple of Advil can't fix.
I can't remember who asked....
My MO referred me to an RO for radiation. It was the decision of the RO after an initial consultation whether to radiate or not.
And the bone biopsy did cause me a bit of walking pain for about 2 days. I had a "cocktail" during the procedure for a conscious sedation.
I had to bare my bum for the biopsy - they went through the butt cheek as it was the easiest entry point to reach the lesion. I was not expecting that!
I had to bare my front "cha-cha" for radiation. I was not expecting this either and after the first treatment I considered getting a wax but then didn't because I didn't want the techs to think I was trying to impress them!
The weather's been nice here so I wore summer dresses that I could just lift up and drop my drawers for each treatment.
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Marie,
My lesion was on the femoral head closer to the front of my hip, so biopsy was done through the front. I think that after all of this bc stuff, I have lost my modesty around medical professionals. I was told that hair loss could be an se of rads. I was hoping for a rads induced waxing, but no such luck!0 -
The anesthesiologist came to talk to me before the port placement and asked whether I wanted general anesthesia or twilight sleep. I definitely wanted twilight sleep, since I've had good results from that and bad, bad ones from general anesthesia. I hope they let you choose, and I can't think why they wouldn't. I think it's a fairly small surgery. I went to work the next day, although I probably shouldn't have!
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CELEBRATE WITH ME!!!!
I got my first check of tumor markers and they are going down! From 1560 to 354 for one of them and from 29 to 11 for the other!!! I also managed to finally get a scrip for PT and we all agreed to postpone radiation and see if pain continues to improve (decrease of course). They found a fracture in my pubic bone that the orthopaedic doctor thought could be contributing to the pain. There are tons of lytic lesions in my hips and pelvis and she was in favor of the radiation but said it was not a must do situation - just be careful not to fall. The medical oncologist said that he doesn't think radiation protects against fractures so if I am OK at current pain levels for now - he is willing to postpone and discuss again at a later date. This is truly a RED LETTER day.
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Congratulations on your Good News 20130502, I Love when we get positive news on this site!!!!!!
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May (can I call you that--I'm assuming that's your birth month?), I'm glad you had such a good doctor visit! I'll bet that fracture is contributing to your pain!
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20130502 that is fabulous news!! Happy dancing for you!
Love n hugs. Chrissy
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Great news!!
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Congrats, 2013!
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Finally, a scrip for PT. So glad for you, 20130502! :-D
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A real gold letter day. Congratulations!
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TarheelMichelle, When I was diagnosed in 2008 I was node negative, and my surgeon said because of that she didn't think I would even need chemotherapy. I guess I had almost 5 years of ignorant bliss, but maybe I would've been more pro-active when it came to screenings if I had known that 70% (wow, shocking) of node negative patients have their cancer return within 5 years!
Thanks all of you who helped clear up how the cancer spreads; that makes sense.
Mariek, Yikes! that biopsy sounds really painful! I have mine tomorrow, I'm not sure even where it will be...The doctor said the lesions in my lungs are too small and he doesn't want to risk a pneumothorax, so it'll be either in my spine or my ribs, depending on what the MRI revealed. They did say it would be under twlight sleep. I laughed when I read about you considering getting a wax for your radiation treatments but not wanting them to think you were trying to impress....I'm sure I would think that exact thing.
2013, It's so wonderful to have good news, congratulations! Glad that you will finally be able to get to the physical therapist.
MaryLW, Thanks for the input, I did talk to the anesthesiologist yesterday when I got my port, and the plan was for general anesthesia. I told him my history with nausea, and he said he didn't see why we couldn't do propophol (sp?) instead of general, and it was great! I wasn't aware of a thing and no nausea! I wish I was having the biopsy in the same hospital with the same anesthesiologist, but that didn't work out. Are you still working? I did work through my first diagnosis and chemo, but am retired now. It was really hard, I had a very stressful job and felt like I was in chemo fog most of the time. I admire anyone who is able to continue to work and deal with the pain, etc.
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Linda, I'm so glad your port placement went well. I've been really happy with my port, and much less stressed about all the needles. I'm not working any more, thank heavens! I worked the first time I had cancer and chemo, and it was really tough. When I had a recurrence 11 years later, I finished out the school year, which was only about 6 weeks, and then retired. This time, 5 years later, I really couldn't have worked even if I'd wanted to, which I didn't 😀.
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Lindatwo, I'll be thinking about you Wednesday and hoping your biopsy is easy. Lots of time at doc for you lately, just the visits and the worry can wear you out, not to mention the procedures and pain. (My biopsy was CT-guided lung and it was terrible pain even with a very fine doctor and lots of dope. Dr's first words to me were "This may be the hardest biopsy I've ever done." (Because of location of tumor) Definitely hardest for me .... haha. Hoping you have angelic nurses and brilliant compassionate docs today.
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TarheelMichelle, Thank you for your thoughts, I am so sorry your biopsy was terrible, did they decide to biopsy the lung instead of one of your bones because that was the largest area? I remember my sister having a liver biopsy that was terrible too, so that is what I was fearful of. Mine ended up being CT guided through my left upper/outer butt cheek. I forget which bone he called it, the back of the pelvis. They gave me Versed and something else, and I could feel the whole thing, but there was NO pain! I am so thankful, had lots of people praying for me.
MaryLW, I hope I am as pleased with my port as you are. How long was it after placement before you could use it? The nurse who gave me the meds for my biopsy today wanted to know why they started an IV instead of using my port. I thought it was awfully soon to use it, I haven't even removed the covering yet. Were you a teacher? I was a school secretary, a very stressful job, but I loved the kids, the teachers, and my co-workers. I was thankful to have the job I did, I had health insurance through work and through my husband, so that was amazing. I decided life was too short and so I retired so my husband and I could travel. Well, life doesn't always go the way we plan does it? I certainly do appreciate the fact that I can stay home and nap when I feel like it now though!
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Lindatwo, so happy you did not feel pain! yes to your question of my lung biopsy over bone. My lung was worst looking on initial scan. Biopsy caused extra bleeding (not uncommon) which created more pain. Surgeon was SOO apologetic for hurting me.
When do you get results?
I'm glad you don't have to work. Don't know how these gals with young children and/or full-time jobs do it all, (like you did, MaryLW) but I admire them. I miss working, feel like a terribly dull person without it. I used to be a journalist and kept up with all the the local news and gossip. MaryLW, I was once a reporter for the St. Pete Times, and am vacationing in your lovely city this week.0 -
Lindatwo....the port can be used immediately. Only RNs can access your port, LPNs and technicians can't .
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Hi, Linda. I don't remember how soon I used my port, but I COULD have used it the next day. I had it placed one day, went to work the next, just planning to stay for half a day because I had a thyroid biopsy that afternoon. Actually, I started crying at about 10:00 and couldn't stop, so my supervisor called my husband to come get me! Anyway, I was planning to use the port for the IV during the biopsy, but the doctor preferred using an arm vein. I was disappointed, but a little relieved because the port was still sore. I'm sure I was using it soon after that, though.
Yes, I was a teacher. My supervisors and co-workers were really good to me both times I had cancer treatments while I was still working. In fact, the whole school system was wonderful. The kids (middle and high school) were really supportive and encouraging, too. ☺0 -
Ronda, how great that you used to be a journalist--and with the St. Pete Times. It's the Tampa Bay Times now, but I haven't gotten used to the new name yet. I hope you have a good time here this week. My daughter just moved to NC, so we'll be visiting there a lot!
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Ronda, I have an appointment with my MO on tuesday, so don't know if he will call me or wait until then to give me the results.
Your job sounds like it was probably challenging and fun. It is hard to go from being in the thick of things to suddenly just trying to keep track of appointments and paying medical bills! I'm glad to see you are able to do some vacationing, I have wondered if I will ever be able to do that again, so that is encouraging to me.
MaryLW, I'm sure I will feel better about using the port when it is a little less sore. I notice that neither you nor Ronda are having chemo this time. My doctor talked to me about the different treatment choices, and my husband and I decided on chemo, but sometimes I wonder if I want to do it again. It will be once a week, so less strong than the T/C I received before. Any thoughts from either of you?
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Lindatwo, I had chemo the first time without a port, and that was just miserable. When I had a recurrence 11 years later, I got a port. My chemo and blood tests were so much easier. I decided to keep the port for the rest of my life, and now with mets, I'm really glad I did. My MO said that since I'm ER+, I can do hormone therapy. One of these days, all of the various hormone therapy meds will probably stop working, and then I'll do chemo again. From what the other women here doing chemo have said, I don't think it's as bad as when you're doing adjuvant treatment. Do you know what drugs you'll be taking?
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Hi all. Don't know if you can stand another Zometa question, but here goes! I'm getting a monthly infusion. The first one in February was right after surgery and I was really sick from it, but figured it could be partly because of surgery. The subsequent ones have been better up until the one yesterday. I am just feeling yuck - queasy, tired, spacey, freezing cold, etc. Is there anything that anyone has found that one can do in advance of the infusion to make it easier on the body? For example, I've heard that hydrating in a big way makes chemo a bit easier. Is there anything analogous for Zometa? I don't want to stop the treatment; just looking for any tips to make it a little less onerous.
Thanks!
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Lindatwo, my doctors have told me there are plenty of options for hormone positive Stage IV women like me without resorting to chemo. Why IS your doctor recommending chemo? You said you are doing it again in your last post, but you were node negative, right? Chemo doesn't have a stellar success rate. There are plenty of Stage IV women with many years of stability using only hormonal treatment. You've already tried chemo once and the cancer is back. Did the doctor discuss hormonal therapies? You DO have options that could be less toxic on your system. Please don't take offense at my questions. I'm just curious, not judgmental. Plus, you can get to vacationing a little faster without chemo to tie you down!
MaryLW, I hope your daughter loves my home state of NC as much as I do. I had a wonderful time in Florida this week. Sunny and breezy. Perfect weather!0 -
Kiwicatmom,
I had exactly the same problem with zometa in the beginning - the spacey, sick feeling lasted a week! When I mentioned this to the nurse, she said she'd slow down the infusion to see if that helped, and it did. Instead of running for half an hour, I got my zometa over 1 and half hours and it made all the difference. Never had any more problems with it.
Hope this helps!
Nicky0 -
Kiwicatmom,
I have Aredia rather than Zometa but they have similar se's. I agree with Nicky about slowing down the infusion. I only had a bad time when I was infused quickly. Drinking lots of water is very helpful too!
Caryn0
