Bone Mets Thread
Comments
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Glad to hear you are doing better roberta37, I was worried about you after your last post. I'm glad they were able to start your treatment again.
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Roberta,
Rough start, hopeful end. Glad you checked in and I wish you the best.
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Kate, I will be praying that your scans confirm that the Aromasin is working great!!! It's tough waiting to hear!
And Roberta, what a miraculous turnaround! It sounds like the two transfusions you got gave you a much-needed boost! And, wow, a 50% drop in your TMs is absolutely wonderful -- an answer to prayer!
theresalwayshope, I'm sorry about your Mum's diagnosis. As far as exercise, it's really best to ask her oncologist, or to get a referral to a specialist for recommendations because we're all so different. In general, things like walking and swimming work for many of us. Obviously, anything that could increase her risk of a fall or fracture should be avoided. But other than that, doctors who know her really need to answer that question. Deanna
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Hi Kiwi, Golden, Bronx and Deanna!
Thank you for your thoughts. I had my first brain zap of 5 today. We all get through! We just keep getting up and we keep showing up. That's all we can do. And I'm guilty of googling stats too, especially now, but truth of the matter is, nobody has an expiration date stamped on their forehead. Just for today, we will get through, and then again tomorrow, when it arrives. xoxo
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Marie and Roberta - great news for you two! Kate - wishing you good luck.
Skylotus - As my husband keeps telling me, there are lies, damn lies, and statistics. I met a woman a few months back who has brain, lung, bone, and liver mets and can't tolerate any of the AIs or chemo. This is her second year since being diagnosed with the brain mets. And she's just ticking along, living life, and was headed to Auckland (we met at the airport) to go to a rock concert and party. I sent you a PM Sky, and may have to send you another one.
Hugs to all,
Terre0 -
Deanna and Birdlady - my appointment is tomorrow at the Spine Clinic. I actually have a brace left over from two years ago - just before I was diagnosed - they thought my pain was from a sports injury - and I have put it on and it does feel good to have my shoulders pulled back into place. It's too big now since I lost an inch in height as well as some weight, but I think the concept is good. I know I have scoliosis from all of the compressions...and I don't want the hunching to become worse, so I am just hoping they can help. I've never had a bone density scan..... hmmmm......I wonder why? I haven't even had a bone scan for about a year; just PET Scans. Anyway - I will let you know what the Spine Clinic says!
Kate1974- good luck with your scan! I get PET scans every six months as well at this point....diagnosed almost two years ago and have been on that schedule since finishing my radiation.
MarieK - congrats on the NED! My PET scans are like yours: they can still see the scarring left over from the tumors, but there is no "uptake" so the scans show no evidence of disease, at least for the time being.
therealways - sorry to hear about your mom. I had stiffness in my back as well, although it has been resolved. I would recommend stretching, yoga if she can do it, swimming, walking..... low impact to begin with.
love to all of you!
Andi
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thank you Andie and deanna for ur replies.:)
Her bone scan at the time of diagnosis showed increased uptake in her right femur and skull and those areas were clear in the follow up petscan after three months...we r hopeful that it is a regression although the doctor suggested that petscan isn't very sensitive sometimes for bone uptake
...I hope that the hormonal treatment is really doing its work despite no biopsy so far...and that biopsy results are consistent with the treatment she has been taking these three months.Prayers for all you strong women and mum!
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hi Kiwi! Got your pm's, thank you, very sweet of you! ;-)
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You're welcome SkyLotus. Nothing like the Toyota "Bugger" ad to brighten the day. They also did one for the Toyota Hilux with bulls (yes, this is horribly off-topic) that his beyond hilarious. If you check Hylux bulls ad on YouTube, you can find it. It was considered a bit risque, but I find it funny.
Hoping your scans go well Kate. Good on you for trusting your intuition and being your own advocate, SkyLotus. Glad they found it early and sending good thoughts for a successful treatment.
Theresalways - sounds like your mother's scans are good; sounds promising that the meds are doing their job.
I'm still waiting to see when my onc appt is..sometime in late August. We're moving mid-August, I have more work than I can handle, and I'm tired and sore all over. Bit of stress here and there which has me in a bit of a funk. So I keep watching the wimpy goat video to cheer myself up.
Just keep reminding myself to give it all I've got! http://www.youtube.com/watch?v=DV_3qx-oBms (you'll need sound - only six seconds, but six seconds of pure joy)0 -
All, sorry I've been MIA and now I'm trying to read back on the comments while working.
Deanna thanks for the positive links and encouragement on life expectancy, etc.
Regarding your back, have you tried a good massage therapist who works in several areas, like neuromuscular, medical, etc? I found a great one that has helped with muscles bunching, knotting, etc. She really works the kinks out! I tried PT after I was in a car accident last year and that did nothing for me but make me worse. I'm on Fentanyl patches, 25 mcg and have been since last October, but the medical/neuromuscular massages are a Godsend. You just have to find the right therapist and I went through about 5 before I found "the one".
Skylotus, please know that we care and are pulling for you.
Kiwi, I find watching funny videos and shows on t.v. help me a lot with my stress.
I'm waiting on my PET scan and MRI, it's set for August 18th now. I had to reschedule because my oldest daughter and her hubby were expecting their third child and I didn't want to miss it. Which brings me to some happy news: My daughter went into labor on her own on Sunday July
27 and he was
born at 12:57 a.m. Monday! So he's a July 28 baby but 57 minutes. She
and my grandson are doing well. He was 8 lbs, 12 oz and 21 inches long!!
This is her and her husband's third and last! I'm a GiGi of 3! They are
all 23 months apart! Girl, boy, boy!
I will keep you all in my thoughts and if you don't mind, my prayers as well.Wanda
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Andi, Birdlady, Deanna and Nkuehl, I too have hunching from spinal mets and compression fxs and I've lost nearly 3 inches in height. Just to compare symptoms - when walking or standing I feel like there's pressure forcing my head down and there's a vice like grip on the back of my head. My back feels stiff and tight almost in spasm and I feel there's not enough space for my tummy which is becoming protuberent and I long to be stretched on a rack. Lying down flat feels great initially and after a while becomes uncomfortable. Onc not concerned as it isn't cancer, my pain meds do nothing for this. I think it's a muscular/skelatel reaction to the loss of height but how to deal with it is the question. I would love a massage but Onc says my bones are too fragile. The back brace sounds good. Andi, I am so interested in what advice you will be given today. Take care everyone. Hugs xx
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I've lost at least 1 1/2 inches and that is with my lower back having 16 pins & screws. I have scoliosis and when I had it operated in 2001 (the first time was when I was a teenager) I gained 2 inches. It's kind of sad to loose those hard fought inches. Not to mention there are now things I can't reach. It is nice to know though that it is more common than I thought.
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Oh yeah, shrinkage going on here as well.......I've lost a good inch and a half in the last ten years since BC decided to come and live with me. I used to think I was tall(ish) at 5'4 1/2" with the shrinkage and the fact that all my grandchildren are taller than I, I think I'm beginning to feel like a short ass! I'm okay with that as long as it doesn't continue, my legs are already longer than my body.....can you imagine the ultimate picture if I continue in this vein?
Just thought I'd give you girls a bit of a giggle.........but is all true.....lol
Love n hugs. Chrissy
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Yeah well, I know it's not a competition but loosing inches feels even worse to me when I was 4'11" to begin with. So far I've only lost an inch due to my fx on right femur and subsequent rod in place, plus my leg is kind of crooked so I really can't stand tall. I just started PT again in hopes it will improve. Sigh
Aurora
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Interesting that quite a few of us here are on the petite side. I've always been 5' 4", but now more like 5' 3". I've also always had some scoliosis, which I haven't even thought about in years, but which was noticeably pronounced on the CT I had in December, when I was so sick and weak. I was also just thinking how easy it is jump to false assumptions when you're looking for the cause of anything. If you surveyed only the handful of us who have weighed in on hunching, for example, someone could easily conclude that the problem is more common in shorter women, or even somehow related to being short, which I'm pretty sure it's not!
But the main reason I stopped by is to share is a conversation I had with a friend a couple of days ago. She doesn't have bc but is also concerned about hunched shoulders, and what she does -- in addition to having recently worked with a trainer who gave her a routine that included pull down weights to strengthen her back muscles -- is, she carries a large dowel stick when she walks and wraps her arms over it behind her back. She swears it helps to make her stand straighter, and it does sound like it might help. Anyway, I'm going to try it, and thought the idea was worth passing along. Deanna
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Chrissy - my husband (who is 6'1) says I'm not a short ass, but "vertically challenged."
I'll have to get measured next time I go to the doc. I don't feel any shorter, but I've definitely gained inches around my tummy..and everywhere else. Thanks for the idea, Deanna. I can say that it does work and it reminds you to stand straighter. I joke that I sit like a vulture at the computer (always have), and someone said I have typical "big boob girl posture" which is hunching my shoulders in to make them look a bit smaller. So given that I have a history of hunching, this is thread has been of special interest to me because it sounds like if I don't get my act together, it could get a lot worse in days to come.
Kind regards,
Terre
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I was 5'7 1/2'' tall now I'm around 5'4''. DH says he can't recognise me when we're out as he's looking for someone taller with dark hair! My DSs call me 'little Mum' and pat me on the head...
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Hi !!! I got call from my dr today with my pet scan results. Great news and not so great news. I have no tumors in any bones or organs. (First scan 6 months ago was sternum and lymph nodes, had rads on sternum) . He is very happy about that, however three new nodes so he want to see me about additional treatment. I have been on Aromasin for four months. He said he gas to think about it. Poss Herceptin. Has anyone had nodes that are being a bitch?? Lol. Thanks guys!!!
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Hi Kate, Glad it was mostly good news! Last scan for me I had NED in bones but had an active lymph node that "we're watching". No advice to offer as I am waiting for my follow up appt.
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Thanks ladies for answering the questions a few pages back. I went to Los Angeles to the Bicher Clinic for the low radiation/hyperthermia heat treatment. My oncologist wanted to do a few more scans, and a biopsy on the hyler lymph nodes to make sure it was breast cancer. I asked my husband to tell Bicher I wasn't coming and they promised him I would be cured and they could reach the deep inoperative tumors that my mo said could not be helped. They convinced my husband I had to drop everything and come there NOW...SO in a day I was tossed to Los Angeles by myself. I thought I was tough and could manage on my own. The first week the so called low radiation took a lot out of me and I felt my spine cave in. Not sure which vertebrate, but the one just below the neck felt compressed to where I could hardly walk, and when I did I felt like passing out, especially if I carried anything, even my purse. I ended up at the UCLA Santa Monica hospital, which ended up being a blessing. My case was seen by the tumor board and put ahead of the line to see the recommended oncologist, who said for me to get back home to my oncologist before I was hurt by the clinic...if not already. I was pulled by patients from the clinic and her opinion. I decided a week later to quit their treatment as they seem disorganized and not professional. My daughter came mid way to stay with me and after she saw what was going on and how I went from strong to a weaken state thought I had better be home.
I'm home, and had my first Herceptin infusion this week, and back on track. I am nervous about the bone xera (sp) bone shot after reading side effects. I seem to fall in the small percentages who get negative side effects. I will also in a few weeks have Perjeta infusions...and a estrogen blocker. This is all very scary...really scary.
I had two MRI exams today...45 minutes each on my back...I think it was all upper back and neck. It is so hard to believe I have cancer throughout my spine, hips and femur. I feel broken. I am 5'8" and so far stand tall. I have lost about 14 pounds that I'm now working on putting back at least 5 pounds. I saw the lung doctor and will have a needle biopsy on the hlyer lymph nodes that are deep so for that I will be put under. My oncologist wants to stabilize me before any surgery.
I am seeing a massage therapist on a regular basis...without her help, I would be a wreck...mostly works on the muscles. I'm trying to stay positive, and not let the cancer define me. It is hard cause the treatment does affect your energy level. I don't want people to see me as dysfunctional or sick. I really don't know how to do all this or know the medical terms for all the medicine, and protocol for stage iv cancer. I want to keep working full time...just have to be creative how I do it and see doctors/treatments.
Thanks for your post. I am trying to read, although behind, the bone mets threads as I need to learn from you as bone mets is the source of my pain. I don't want broken bones so I have to be pro-active to how it is treated.
Questions is radiation to bones. I read there is a cyber knife that can go to the bone cancer. I wonder if it is a one time or if you have several treatments. I will soon be seeing a radiation oncologist. I was told radiation will resolve bone pain. I also read the bone will heal itself and be like new. What do you think?
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Good morning Hindsfeet, sorry to hear about your experiences. I had radiation to my painful areas (hip and lower back) this past fall. Radiologist at first prescribed 10 treatments, no relief so she had me do 5 more. Relief took a while about 4 - 6 weeks but it did work. As with any treatment there were side effects. Rads to the pelvis area does interfer with your digestion system my reaction was diarrehea and of course fatigue.
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hindsfeet,
So good to hear from you. I am sorry that you are still in pain. Rads to the bone is very helpful to many in terms of alleviating pain and sometimes rendering the mets necrotic. I had rads x15 to my upper femur. Although still visible on scans , it is not longer active. I took very good care of my skin, so no damage but had some short lived diarrhea and fatigue. You also mention bone cancer toward the end of your post, but you have to be clear. You do not have bone cancer, rather breast cancer that has spread to the bone and will always be treated as breast cancer. As to being seen as dysfunctional or sick? Well, that may be true at times during tx and is nothing to be ashamed of. I was on medical leave for a bit over three months from my job and had ups and downs and clearly couldn't work. I was sick and could not function normally during that time but had no reason to pretend otherwise. Eventually, I recovered and did go back to work. I'm still stage IV, but doing well for now.
Medical terms, tx protocol ? We learned as we went along, just as you likely will. I know you were a proponent of alternative tx and you educated yourself about that. This is no different. It does seem like a foreign language at first but this is your life and your body, so the motivation to learn is pretty great.
Lastly, are you done with the Bicher Clinic (I was unclear) ? What are your thoughts on their tx? Would you recommend them to others?
ETA: Sorry, I just re-read your post and see you are no longer being treated at Bicher. I guess I would have been leery of any institution that said I had to get there NOW and that they could cure me. You have always been so sweet and trusting. I am so sorry you had to go through this.
Thinking of you and hoping you see relief and improvement very soon.
Caryn
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Kate- great news on the bones and organs! I have had a "bitch" lymph node that was stable for about a year, then decreased in size and uptake but still remained, and has remained stable for another four months as of my last scan. So as of January 2013, this thing has decreased somewhat but has otherwise remained stable. No other areas have been noted since march of 2013. I even went for 3 additional opinions to explore surgery because I wanted it gone, but thus far have decided against it because of what would be involved and because no one can say if there would be a benefit systemically. No one has recommended changing my systemic treatment.
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I have lost 2 and a 1/2 inches. Spinal Mets.0 -
Dear Kate--I had my inframammary chain all lit up. Three cycles of Abraxane, and there is nothing there at all.
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hey everyone!
just came back from the orthopedic surgeon who would be involved with bone biopsy! i have looked everywhre on the net about bone biopsy but i feel a little insecure about it. did any of the doctors mention potential cancel cells spillage during or aftr biopsy? especially if the verterbra are used for the purpose? it would be really helpful if i cud know some of the bone biopsy details.
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Caryn, ok...I am learning. I am doing both alternative and conventional. I've declined chemo. I will be treated with Herceptin/Perjeta and an estrogen blocker...maybe bone hardening shot. I am also doing essiac tea, and a few other alternative treatments...plus essiental oils. I have a whole arsenal of immune supplements given to me by my holistic friends. I am also a part of a holistic bc group of women who are very balanced. I plan to at least twice a month get vitamin C infusions plus juicing. I know it is going to take more than alternative medicine to stabilize the cancer throughout my bones, lungs, lymphatic system, and a spot in my liver. They haven't checked my brain yet. I don't know if I can even emotionally deal with that right now. Right now it is all surreal.I'm grateful to have a fantastic oncologist, who cares and is willing to work with someone like me. I love it that she is willing to customize my treatment to something I'm comfortable with. She just says lets take one step at a time.
Bicher is good for spot treatment not for stage iv cancer patients. They build themselves up to be more than they are. There are patients who come there who have been helped. I've met them. They are a little on the old school and not up with present protocol or newer breast cancer information. I felt like I was in a little clinic inside Mexico...nothing against it...just not what you expect from a place that calls them an "institute". They do not have a medical oncologist (act like they are medical oncologist) and treat patients who need one. I suggested to a few they find a medical oncologist as they get rid of one spot only to have another tumor pop up.
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I wanted to add that my treatment plan is on the lines of targeted therapy. I had the choice to choose between the typical treatment plan for my type of cancer or targeted therapy, where I am getting both Herceptin & Perjeta, plus a bone hardening shot, and estrogen blocker. They said it is equally as effective.
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Wow to everyone on these threads....All of us Stage 4 ladies have different diagnoses and other particulars. I stay amazed at how everyone handles their cancer pretty well all things considered....I had extensive medical education and professional experience until diagnosis 8 months ago and yet I had never heard of half of the things that others speak about with great authority on...UNTIL I was diagnosed with stage 4 from the get go. What a learning curve it has been. I have been humbled and now grateful to have the information that comes my way both from just lurking and also from participating. Reading other posts has given me courage and strength to press on as I realize that there is no clear timeline for any of us.. I joyfully read of one of us having 12 years of stage 4 and I sorrowfully read this week of a wonderful gal ending her journey on this earth and becoming a BC angel. My awe and thanks to all of you contributors. All contributions add to the education that helps us make it through the valley of breast cancer. Carolyn from Music City
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Carolyn, I was dx with stage IV from the get go, too. We have so much to learn so fast! I am so very thankful for this site, and the wonderful ladies here who share their stories. They have taught me about treatments, side effects, and the emotional stuff that goes with this horrible disease. I am very blessed with a strong and loving family, great friends, and a wonderful onco medical team. I agree that all contributions add to our education, and help us.Thank you all! Wishing you comfort! Birdlady
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