Bone Mets Thread
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lulubee have you tried using a high density foam pillow? It's the equivalent of a therapeutic bed mattress material that shapes to your body, instead of typically quickly flattening or feeling too hard and unwielding. Something like this....https://www.tempurpillows.com/?gclid=CjwKCAjw8O7bBRB0EiwAfbrTh4VXyePKeSAuZ2wWVI6UTW7YKPhNUR6mkzaLr6dYMkYlOY_6oILkLRoCV9gQAvD_BwE
Tempur-pedic pillows
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Lulubee,
I haven't any suggestions for an office chair, but at home I do all my work from a Lazyboy Chair. My hips and back feel better with my legs in the recline posture - seems to take pressure off the hip and lower back. I have one upstairs and down.
They aren't the best looking chairs, but can be easily found on Craigs List, so you can try one without making a huge investment.
Jennifer
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Miaomix, the tempuredic pillow is a great idea even if just for the portability. We bone metsters should probably all own one to have handy just in case because we never know when a vertebra is gonna start up shenanigans. I had a pillow or two like that in the early years when bone mets first flared. I had a mesh lumbar support thingy in my car also. I clearly need to clean out a closet and see if I still have those.
Suzy, that sounds awful about your femur! No worries about me needing to get my bones checked out—I'm a research subject so believe me when I say I am constantly under surveillance and scanned “every which way but Tuesday" as they say. I have bone mets literally everywhere. Every dang bone. This pain flare is because of this recent progression, which is “take six" for me on progressions. I will start the next meds next week and hopefully the pain will ease then.
Lazyboy, huh Jennifer? I have a mission style recliner but it throws weight on my lumbar mets. I'll give the Lazyboys a try. I have no idea where I would stick one; something's gotta go. I'll see what I can figure out.
Keep the ideas coming if ya got 'em! Because owwwww.
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lulubee -I just got my best chair ever at at yard sale! It is an electric recliner that can also go forward enough to 'push' you out of the chair if you are unable - it is the best money spent so far!!!
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Shanna-I was first diagnosed, at 43, Stage 1 IDC in 2005 (found on a routine mammogram). I had a lumpectomy, sentinal node biopsy, and 6 weeks of radiation. I skipped chemo after taking the Oncotype DX test. It showed I had an 8% chance of recurrence in 10 years, chemo would have dropped it to 5%. In 2012, I was having upper back pain. I went to my PCP and she put me on predisone. It didn't help. She sent me for an x-ray, and said I had a compression fracture in my spine. I was then sent for an MRI. She called me on the phone crying, saying that my cancer was back. It was in my lymph nodes, right lung, and spine (not the breast though). I had it repaired by kyphoplasty. I've had 3 more since, and one vertebra that is too far up to repair, remains fractured. It's now also in my liver, hips, pelvis, ribs, sternum, collar bone, and skull. I've been on 7 treatments in the 6 years at Stage 4, and I still drive and do most of the things I want. I can't walk or stand for long periods, so I have a wheelchair I use (mostly on vacations). I was on Faslodex for my first treatment. I was on it for 1 1/2 years. I didn't sleep well with them though, because of where they gave the injections. I'm a side sleeper and I would be bruised and achy for a couple weeks. I don't recall any side effects from it. I was on Letrozole alone, for another treatment (3 months, didn't work), and also I took it after having my ovaries removed in 2005, and with Ibrance (for 6 months). I felt achy in my feet and joints, and felt 100 years old. I stopped working after the Faslodex stopped working. I didn't know how much time I had left and wanted to spend it with my family. I know it''s scary to be re-diagnosed, but there are many treatments out there for us. Just remember, we are living with cancer not dying from it! HUGS!
lulubee-I have had a kyphoplasty in the lower lumbar area. I have pain there all the time. I find the cushier the bed, sofa, chair, the better.
SheilaMarie-Good luck on your Pet scan on Thursday. Hugs!
Constantlya-My tumor markers had been going up quite a bit, so my oncologist ordered CTs and bone scan, a month early (I get them every 3 months). It showed growth of a tumor in my lung, and new nodules, so we just changed chemos (had my first new one Thursday). She keeps an I on them, and if it jumps like that she'll scan (it's the first time in 6 years it's jumped 50 or more points from the last one each time). It's funny the last tumor marker she took, before I started the new chemo actually went down.
LovefromPhi-I have an oil for my medical marijuana. I too, like Lita, had never smoked anything before, and intended to be that way until the end. I put drops under my tongue. The first one they had me try had the smallest amount of THC in it. They started me at 4 drops, I was higher than a kite. Slurring, dizzy, etc. I got off it after a week of it, and started one drop at a time. That was better, but sitll didn't like that feeling. Now I have one that is just CBD, no high. I don't mind the high at bedtime, but I still drive and want to be able to function during the day. It helps a little bit for the pain.
Raven-I hope your liver biopsy went well yesterday. My first treatment of CMF (Cyclophosphamide Methotrexate Flourouracil are the 3 drugs) went well. The first one is in an iv bag, the other 2 are injections they push into the iv line. I was given dexamethadone (steroid) and an anti nausea med injection before the chemo,. I was there a half hour longer than my last chemo. On the ride to Vt afterwards, I got extremely sweaty (even with the a/c going). I never get that sweaty. I was soaked through my clothes. I took a cool shower after we got to the hotel, and put on my "moisture wicking" nightgown, and sweatted all night long too. The next day I was fine. I looked up to see if this was a side effect, and didn't see anything. My appetite has been off since (I barely ate anything at the wedding), and my best friend, diarrhea reared it's head and is still going, but not as bad as the last chemo. I just have to remember to drink and eat. Hopefully, I won't have any other side effects, and maybe even my hair will grow back! LOL
Gracie-Congrats on 2 years!! Yes 18 more years would be great, for ALL of us!!
Hugs to all!
Lynne
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Hi Lynne,
My biopsy went very well, I have some result mainly that it is Breast cancer in the liver not a new cant and most likely er pr pos. But they are doing the die test should have the results on friday or monday.
So I am supposed to do round 2 tomorrow of the same med your taking and Eirubucin called EC ( Epirupicin/ Cyclophosphamide) my liver function test go up every week sky high now. My question is..that normal when switching over to new meds. She want to do 6 rounds after 3 rounds do a new CT scan. Should I continue and take 2 more rounds or stop now and find something else. The Cyclophophamide or both messed up my stomach and I had loose diarrhea for 6 day s after. But had 2 good weeks except foe severe neutropenia in week 2. went down to 1.7 ANC 0.3 neutrophils. 2 shots of ZARZA shot me up to 26,000 in WBC, it has come down now to 22,000. One shot would have been plenty good. They hurt alot like Zometa, feel the bone pain.
Any suggestions for me??
Raven
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Raven-Did they give you a prescription for the diarrhea? I have 2. One is 2 pills after each episode, up to 4 times a day. The other I haven't tried yet (it's stronger and to be used if the pills don't work). It's a powder you mix with water or juice. I'm having diarrhea after my first treatment on Thursday. Not as bad as the Taxotere was though (hopefully, it stays that way). How often are you having treatments (I have mine once every 3 weeks)? It sounds like your doctor wants to give it time to work, 3 rounds and then scans, seems like the norm. My doctor always does it after 3 treatments (which is around 3 months with the past chemo and this chemo). I would take the next 2 rounds at least, and see what the scans say. I hope the side effects get better for you!
Lynne
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Hi Lulubee ... another question about TM's and pain. My TM's have been creeping up slightly the last few months, so I am having scan next week. I have some pain here and there for a day or two, then it disappears or may move to another area a few days later for a short period of time, then disappear. Does anyone else see this? Do you normally report pain if it hangs around for some significant period of time?
Kathy
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hi everyone! I had extensive bone mets in my spine, pelvis, and shoulder blades without any pain I was aware of when I was diagnosed. I have been on Ibrance/letrazole for about 1.5 years now and all tumors have shrunk.
When I lie down, my arms shoulders elbows and neck ache terribly and make sleeping challenging. My arms also fall asleep every night. It’s really hard to get comfortable.
Has anyone experienced this? Is this bone mets pain or something else?
Seeing my MO tomorrow so will be more persistent about asking about this. All input very appreciated! Thanks!!!!! Love!!0 -
love, I’m not sure about the nature of your pain, but what works for me is to rub some magnesium oil spray on the sore areas. Magnesium relaxes the muscles and the pains goes away immediately. I hope it works for you as well.
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Kathy, those are good questions. This may vary from one patient to another, but I can tell you that in my case, active mets usually hurt steadily. That being said, my lesions often ache more when there are shifts in the weather, particularly rain, and others here have said they experience this also. But that's not a "it comes and goes", but rather more like "it's there and now it's more there".
To your next question: YES, if a spot hurts steadily for a while, I definitely report it. A radiologist writing a scan report cannot comment on every bone met for patients who have more than a few, so they will typically pick 2-3 to highlight and describe as examples. If I have spots I am noticing more, I will ask both the radiologist and my onc to take a particularly thorough look in those areas when reading my images. As an example, on my latest PET, the radiologist did not comment on anything in my lumbar or right ischium/ilium, but that is where my pain is currently at its worst. So I asked my oncologist to go back over the images herself and tell me if I have particularly high SUV in those areas-- and she said yes.
One more pro tip: I now request to have a certain radiologist read my images and write my reports. He has done lots of my reports over the years and I just think he is more thorough and clear in his comments than the others at that center, and also I like to have that continuity of viewpoint and style of description. Sometimes a different radiologist at the center has written my reports and they phrase things so differently and emphasize different kinds of things, so in the end I don't feel like I have a real sense of how that report compares to the previous reports. For example, a few months ago, I got a particularly brief (lazy) reading where the radiologist didn't bother mentioning any particular bones... umm, what am I having this scan for, again??... but at the same time she went out of her way to note that I have two functioning kidneys. Seriously? What the actual heck??
So I suggest that if you find a radiologist you like in a diagnostic center that has more than one, always request that one.
Hope this helps, Kathy, and I wish you all the best news on your upcoming scan!
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LovefromPhilly, just Femara alone can do all of that! I took it for about 18 months and it locked me up like an old crone during the night every single night, and also if I sat for a prolonged period, I could barely get up and stand up straight.
You didn't mention in your bio whether you've had breast surgery. I had lat flap surgery 11 years ago, and at times I've had trouble with fingers/hands going numb in the night. I have a neuromasseuse who restores circulation in my surgery areas and releases the nerve snags in my shoulders and elbows, and that usually stops the hands going numb in the night. It's a bother, isn't it?
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Hi Lynne,
I take Immodium over the counter here n Europe. I got to see my onc this morning before my second dose of chemo and we discussed the rise in liver markers and wants to go on with this treatment. I will come back next week for the Zometa and have a CBC to see if I´m neutropenic. Watch for neutropenia with the cyclophosphamid day 8-14 might need a shot to get it up. No symptoms as you may know.
Good luck to you,
Hugs
Raven
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baywitch and LovefromPhilly: I experience both things that you are describing: pain that comes and goes avery few days and my arms falling asleep during nights. I believe that both issues come from the Letrozole.
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thanks everyone! That helps! I’ll definitely talk with my MO team this morning at my appointment.
Lulubee - I have suspected Letrazole. It does seem to zero in on all the joints that previously were simply sore spots now and again in the past and really cause a humdinger! Oh the joys! I have not had any surgeries because I was de novo stage 4 at time of diagnosis and surgery is typically not recommended unless there’s a serious wound at that stage. I do however get some nerve pain down my right arm which I believe comes from scar tissue that has formed where swollen lymph node in my armpit was? It twangs every now and again. I love the idea of a neuromassage! I haven’t heard of that!
NettaGer: looks like we both share similar stage 4 de novo diagnosis status. Wondering for you how your process was about discovering the breast tumor and bone mets? I was shocked that tumor was so large - I had thought (and been told by previous radiologist after mammogram and ultrasound) that I had a fibroadenoma. I figured it had simply grown a little bit and that is what I was feeling. But turned out I developed cancer. I still beat myself up mentally for not being more proactive about having it checked out by someone else.0 -
So taxotere gives you diareah too? My Onc told me it was the Projeta. That's kinda good news actually, I only have one more round with the taxotere so maybe that side effect will get better.
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LovefromPhilly: My mbc was discovered rather accidentally. After having dealt with some stronger but not very severe back pain in my lower thoriac region for over a month, my orthopedist sent me for an mri to rule out a disc prolapse. Thank goodness, I had a very good radiologist who did not only check the discs (that is what they did merely 2 months before at an mri of my lower spine) but observed the inhomogenities in the spine which were actually the mets. And he saw the enlarged axillary nodes in the first pics which they do for orientation purposes. This is how everything began, the rest was the usual procedure (breast ultrasound, mammography, ct thorax and abdomen, bone scan, biopsy). My primary tumour was 8 x 2.5 x 2 cm. It was not palpable, because of its position in the inner lower quadrant and being partially hidden by the nipple plus me having very large boobs. I had been at my regular check-up at the gynecologist only 3 months before dx. Since I was only 40 at time of dx, I was not yet in the biannually mammography screening. My mum had breast cancer at 52 (and is a 20 year survivor now), but since she had hormone replacement therapy, it was not considered to be heritary (I did the genetic testing now, but there was no finding ... maybe it is a gene they do not know yet, because my mom was also er/pr+, her2- just like me).
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LovefromPhilly, I was also diagnosed as de novo Stage IV. I had breast and armpit pain since about April 2017, but because I couldn't feel any lumps and I had a clean mammogram in July I thought/hoped it was just pre-menopause changes, especially since the pain always tracked with my cycle. The pain went away sometime in October 2017 and I thought all was good. Come December 2017, I felt what appeared to be a small lump below my nipple and at my husband's insistence I went to get it checked by my OB. The doctor sent me for a diagnostic mammogram with ultrasound, noting that the lump was "only 1.5 cm" and the "clear mammogram in July is reassuring". The diagnostic 3D mammogram and the ultrasound couldn't find the tumor either, but the radiologist saw some suspicious lymph nodes and decided to do a biopsy on the spot. Cancer was confirmed, and follow up by MRI and PET/CT showed an 8 cm "tumor area" with multiple lumps linked together by LCIS and a nice scattering of bone mets (several vertebrae, sacrum and both hips).
At the first appointment with the MO, he said he could feel a 5.5 cm tumor, but only because he knew what to look for. I am still amazed that something that size could grow in my B/C cup breasts without being felt or seen until so late in the game.
The bone mets never hurt, so if it hadn't been for the lump growing closer to the skin who knows how much longer I would have gone without knowing, with the cancer quietly spreading....
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This is by far the most I’ve seen posted about the armpit pain and lymph node mets. I’ve felt alone for so long! Until the last couple of weeks my lymph node mets have caused me waaay more trouble than the met in my spine. Now I’ve got severe pain in my back, but not sure if it’s the mets or what. And of course I still have the pain from the lymph nodes and in the armpit.
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Oh my goodness, I am in the same boat with you. I am 51 with clean mammograms for years. Felt a lump in May and it's been a nightmare ever since. I was initially told I was stage II grade 1 but had lymph nodes removed during mastectomy and 4/10 were positive, mass removed was larger than imaging noted it to be and pathology report gave it a grade 2. The baseline CT showed probable mets in right pelvis. That came after a 'clean' bone scan -ugh! Just waiting on bone biopsy to confirm the mets. I haven't started treatments yet because of all the twists and turns in the staging game - ugh! I feel so defeated and everything I read on Dr. Google basically says I'll most likely be dead in just a few years. I'll never understand how mammograms missed a 4 cm mass!! Any advice would be greatly appreciated. I'm freaking out as a stage IV newby!
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Welcome Piscean! The folks In this forum have been the best support!
Dr Google is not our friend. His info is out of date. I was Dx with stage IV mets to bones (lots) 33 months ago and am doing well. I feel good and have recovered strength and emotional balance. (At first I cried a lot.)
The first few months are hard!! Having a treatment plan in place helps. I took lorazepam for a few months to get adjusted to this new reality. It’s completely ok to do that!! Many here consult with palliative care docs to manage pain if it is an issue. Second opinions are also good.
You may want to ask for Bestbird’s Guide. (Scroll up in the topics above to find it.). She updates it regularly and does a great job. We have options and time!
You have much more life to enjoy and new treatments are becoming available all the time.
This group welcomes all questionsand you’ll meet some wonderful folks here. Cursing is also okay...there are moments when it is appropriate
All the best,
Kathryn
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It is comforting to know that my symptoms are not mine alone!
NettaGer and Piggy and everyone who shared their diagnosis stories, thank you for sharing! I remember when I found the fibroadenoma back in 2011 and the hugest wave of fear came over me as I thought for sure it was BC. Then the relief to find out it was benign. Then in 2015 I was scheduled for a follow-up mammogram and I didn't go because I was finishing medical school and so exhausted and incredibly anxious (prob because it was BC!) and couldn't muster up the emotional energy to go. I kept telling myself that I would get there as soon as I was mentally ready to make it and was confused about the lump - it was painful when I had my periods and then would calm down when I wasn't PMS'ing. Makes sense now because of the ER+/PR+ stuff - although I do not totally understand how it all works or cannot quite wrap my brain around it. I need a class with a brilliant teacher to explain all of this to me. It is still mysterious in so many ways!
Anyway - I saw my MO today and asked about my arm/neck/shoulder/elbow pains and they definitely agreed it is the AI causing it and said it can be quite debilitating, especially in already prone-to-arthritis joints. I am going to start alternating Advil and Extra Strength Tylenol at night to see which works better for me.
In other big news, the hospital where I see my MO is the first in the country to have a Medical Marijuana clinic and my MO referred me to them. Going to see how it goes. I will report back!
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Love, just to add to everyone's stories...I had clear mammos for years, but 2 years ago the radiologist saw a suspicious shadow under my arm. I went right in for an ultrasound which showed a lump in my lymph and an immediate biopsy confirmed cancer. I had a MRI and PET/CT the next week which confirmed Stage IV with extensive bone and liver mets. They have never found a tumor in either breast but all my markers confirmed breast cancer. I started Ibrance/Letrozole immediately and am now NEAD with no surgeries.
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Piscean, welcome to the club nobody wants to join. But you'll find unwavering support and guidance here. It sounds weird to say, but this is the hardest time. So many unknowns and uncertainty about every aspect of your life. Not to mention that every time you have to tell a friend or family member the news you're emotionally drained all over again. Please trust that it does get better. Surround yourself with a trusted medical and support team, and once you settle on a treatment plan things will settle down. Come to us with any questions, concerns, or just to vent.
Wow, Love, please update us on the MM clinic! I live in CA, hopefully our state will be next.
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Hi everyone, I am getting super scared/confused/discouraged about how things are going and really need some encouragement please? I started the stage 4 saga this past January with extensive widespread bone mets and small liver and lung Mets. I started off with tamoxifen but had progression so my onc put me on taxol. I had 9 weekly infusions and then started having nightly low grade fevers/chills/sweats with excruciating pain in my leg, started radiation and had huge improvement on pain! After going thru lots of blood work they could find no reason for the fever and diagnosed it as tumor fever?? Screech!! What? Dr google paints that as end of life stuff??!?!? So I’m sure somebody out there can put a lid on that one for me:) ok next problem, because of this tumor fever my onc wants to switch me to Doxil because he says the tumor fever means that taxol is not working on some of the cancer so it ultimately is another failed treatment. I was supposed to start next Wednesday but the radiation onc put a stop to that because Doxil and radiation don’t mix well. Now I’m going to be going maybe 10 weeks without chemo? I’m 45 with 5 wonderful kids and a loving husband and I want to fight with everything in me! How scared should I be? I read so many of our stories and it seems like I’m starting off with the stuff they save for last resources and now I’m wondering if I can come back from this? My oncs haven’t said anything except for that they are concerned but they haven’t given me any timeline or anything like that. Please pull me out of this sinkhole. This sight is absolutely the best with the best people! Thank you so much for always being there. I am sorry if none of this makes sense, I pull out my c card for an excuse;)0
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Chef,
I had the same fever profile with Taxol, and never heard about tumor fever. When the chemo is killing cancer, it can hurt like the dickens. I did 13 months of weekly Taxol. I'm not a medical professional, but in Cancer Land, we want a darn good reason for discontinuing a treatment that could be working. Most MOs need a scan or scary Tumor Markers before they move on to another therapy.
Your RO is right. Doxil and radiation don't mix.
But, I am confused. Why isn't your MO trying Faslodex, or another anti-hormonal therapy? Like you, tamoxifen didn't help me at all, but I had a great run on Faslodex. Doxil is a good drug (did a year on it), but it is cardio-toxic, and there are a bunch of drugs I am used to MOs trying before Doxil (like Halaven or Xeloda). I have heard that some of the older MOs like Doxil because the patient doesn't lose their hair, so they don't look sick.
Cancer is scary, so your fear is appropriate, but you have many miles to go before things get weird. Many. Years. As someone once told me, six years ago, this a marathon, not a sprint.
Hugs from afar.
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thank you Blainejennifer! This is good info, I will ask? You are on to something because my scans were labeled stable, my onc was pleased, my tumor markers are stable, the only thing going on is this nightly fever and the severe pain. I guess they didn’t blame taxol for it because I haven’t had taxol in 4 weeks or so and it still keeps happening? He said that sometimes things look good on tests but these fevers indicate tumor activity that he says obviously mean taxol isn’t working on them, he called them clone cells??? I see that I’ve got to speak up more and knowledge is power so thank you again and a huge thank you for the many years talk, that never gets old!!! I receive and match your hugs;) and I will undoubtedly be back with more questions after I talk to my drs:)0
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Chef47 did your doctor maybe call it tumor flare, not tumor fever? Tumor flare is normal in the first couple months and can cause intense bone pain, swelling, skin redness, rapid enlargement of the tumor, tenderness, low-grade fever, etc. I ran a low-grade fever several times on taxol with no worries. As my doctor directed, I took tylenol and put an ice bag on my head and back of my neck, fever always came down soon after. If it didn't come down, or climbed to 103 I would've headed to the ER. And I agree that the pain from healing can be intense. I don't know if all chemos cause that kind of pain, but the pain in my primary tumor during taxol was brutal. I would want a scan to confirm that the taxol isn't working before moving on to another treatment.
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After a year of having very good response to treatment and my lab work always within line even through chemo, this week a few of my numbers shot above normal range. My MO does the basic stuff in house and we noted that my WBC was high, but since I have no fever or cough I was told to just keep a close watch on things. The rest of it came back from the lab today and was posted to my portal, and first thing I noticed was that my ALP was above range. I researched that it could mean either liver or bones and I have mets in both. Bilirubin is fine so I think my liver is stable (phew!) but sure enough my blood calcium is also high now and has been steadily climbing since June. Other than some rib pain that we've chalked up to healing, and knee/lower leg/foot pain due to neuropathy and herceptin, I don't really have bone pain despite extensive (healing) mets, or any other reason to believe that the treatment is failing.
Has anyone had ALP and calcium shoot up because of healing or is there reason to think it's due to progression again? I won't see my MO again for another 3 weeks, and since the numbers aren't scary-high, they are just above normal, I don't want to call & bug him just yet (I try to save that for the urgent stuff). I noticed that some women have said that AIs can make ALP climb, but I'm not on any AIs. I had started doing light strength training again a couple months ago with my doctor's blessing but if there's reason to suspect my bone mets are active again I probably should stick to exercises that don't put so much stress on the bones.
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BigPeaches-Yes diarrhea for the week after. I had my last treatment of Taxotere, 7/5, after more than a year on it. It stopped working for me. I started CMF last Thursday. Guess what? More of the same. Just not as many times each day. I guess this will be my every 3 week thing once again.
Lynne
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LoriCA, I too have mets in my brachial plexus and this is now the second time. First time RO shrunk tumour and I got 98% use back. He is reluctant to do it for a 3rd time because of nerve damage but having no use of my arm is driving me crazy. How did you get your arm moving again?
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