Bone Mets Thread
Comments
-
KiwiCatMom, Thank you for sharing the uplifting article, and thank you to everyone for welcoming me to the group - sorry I kind of barged in - was in touch with some folks on the Ibrance and Xeloda threads, but I can't really keep up with this one it is so busy. You ladies are so supportive and helpful, thank you so much!
Milaandra, the neck is not crunchy at least yet, but I know what you mean by crunchy since I definitely have had crunchy ribs for a long, long time.
Auroya, praying for some positive news for you!
LindaLou, sorry about the kidney stone, hope you get some relief soon from that and the bone pain! Did you have the lumbar spine radiated? I was unable to walk well with lumbar pain, but radiation relieved it completely for over a year.
0 -
Milaandra yes my daughter says she feels and hears cracking all the time. They are not doing a/t about it yet, I am anxious about that. I sure hope they know what they are doing. I am waiting for the doc to call back today and I wanna make sure he is certain we dont have to do rads to that place. It's that she would need so much to so man places. No, she doesn't do anything special. She takes vit D, what would you suggest??
0 -
Deanna, wishing you a very happy anniversary! ~ Valerie
0 -
Auroya, I'm praying for you. x, Valerie
0 -
Carol, thinking of you. ~ Valerie
0 -
Dearest ladies, you're all in my thoughts, and hoping all our challenges lessen. Warmest wishes to all, Valerie
0 -
Gosh, Linda... A kidney stone on top of more lumbar issues?! That's so unfair! So sorry,0 -
Aurora, I'm praying for a good outcome. Your post was very upsetting and I Hope hope hope there is no amputation! We are all here in spirit praying for you and sending good vibes and just think of us no matter how upset you become. Please keep us posted if you are able to.
Terre- thanks so much for those articles. I need the hope. I really want to do clinical studies that I believe in rather than chemo on the next treatment but the unknown is scary. When the time comes I will be here asking for advice.
I am also on FB and do like it a lot, but this thread seems more intimate somehow to me. I am getting overwhelmed w the number of people on it joining, but I am glad we have a lot of support and I'm glad to give support even though I'm a relative newbie.
Milaandra, I have a very crunchy/grinding neck. I hear sounds all the time. I told my oncologist but then she said her neck crunches too. So now I don't know if it's cancer or just age/degeneration. I was never offered cement/metal rod. Just the Xgeva and a soft and hard neck brace that I HAD to wear.
Stefa- do you have a brace? I would recommend that. I have a soft brace and a hard brace at home. I don't really wear them much anymore but I had to wear the hard brace 24/7 when I was first diagnosed, even to sleep.
0 -
Deanna, Happy Anniversary!
Lindalou- sorry about kidney stones, that really sucks. I've never had any that are painful. I do remember reading on a PET or MRI or some scan recently that there was a kidney stone, but I never heard anything from my doctors about it.
Momallthetime- what is your first name? I am so sorry things are not going well w Dani's treatment. Life is so unfair.
0 -
Lindalou - so sorry about the kidney stones! Ick! Hope you get some relief soon. I think we should make up a list of things were we get a pass: flu, colds, kidney stones, diabetes, skin allergies, hay fever, etc.
3Holly - barge away! You're certainly welcome here! It's a fast moving group and if we forget to mention you, just blame it on Femara (or similar) and menopause brain and don't take it personally. And if you have questions, just holler and someone will answer you at some point!
Need to finish off a work project this morning and then start packing. We move in a week and I've done nothing.
0 -
Well there are a variety of alternative treatments that can be used as support in conjunction with medical and surgical treatment. Cancer is really an immune disease. You just need to find the ones that make sense to you. I mean, as long as the doctors are okay with it, it can't hurt, right? In terms of diet there is macrobiotics, juicing, Budwig, vegan and ketogenic, and combinations of them, and that's just off the top of my head. There is positive thinking and meditation. There is intravenous vitamin C or it's cheaper more convenient cousin, lypospheric vitamin C. There are a whole bunch of other supplements, from indole-3-carbinol to curcumin to modified citrus pectin. Selenium, K7, apricot kernals, essiac tea....the list goes on and on. The reported benefits are almost all antecdotal, although some have actual medical studies with promising results. I don't know if Dani's doctors are like my doctors, but they don't really care what I eat, and are easy-going about the supplements I want to take. Dani being on a chemo, they might want to control her antioxidants. But that still leaves the whole world of food as medicine and mind over health.
0 -
Milaandra you took the words right out of my mouth. I think I can check most of these off under trying. I would add Chaga tea and tincture and hemp oil. I know the latter is very controversial but I will try everything. However the lyposheric vitamin C will be checking that out. I hope this helps Dani out. She has been in my thoughts for the last few days. Hugs to all you wonderful ladies . Yeah it's Friday again and my husband just walked through the door surprising us all (he is working down in Oregon) so have a lovely weekend all.😉😊☺️
0 -
Oh Wendy how nice!! Enjoy! And thx for the good thoughts.
Milaandra - Wendy thanks for the info. I will print this out and check it carefully, they did mention something about injecting vitamin C ever heard of it?
Terre you are right on, you are being kind, the list should be much longer....
Lindalou - that really sucks, hope you get rid of it real soon. It's too much!
Auroaya - can't wait to hear how you are feeling. Cristina - thx for being there.Now come Monday, they will hike up the dosages so let's hope.
0 -
Momallthetime - sending hope, prayers and good thoughts to Dani and to you.
0 -
Hi everyone and update: thankfully the surgery went off without a hitch and no infection no amputation! Just a Seroma which is basically fluid retention in the tissues of the wound . It was cleaned and a drain tube put in place and I'm on antibiotics. Also they're using my port for lab work and the antibiotics which they didn't last time and for me that's really important since I had an IV infiltration in 2013 in another surgery. Also about an hour after they took me to my room the PT came and had me get off the bed and sit in the chair and said the plan is to have me in inpatient therapy and go home soon! Thank you for all your thoughts and prayers.
A
0 -
Great news Auroaya! So happy that you're on the mend. Praying you get to go home soon!
0 -
Aurora, this is the best news ever. Thank you Lord! I have not been able to stop thinking about you. Prayers for therapy to go well and for you to be back home soon. Extra big hugs to you, Annie
0 -
How often do your doctors scan? I was just dx in May with a pet sca. Had a scan at the end of September (pet/ct) and doctor wants to scan in December. I'm brca2+ and don't like being exposed to all the radiation or whatever it is. Thoughts?
TIA
Rachel
0 -
Aurora, I'm so relieved to hear your good news! Thanks so much for updating us. Wow, things sure can turn around in a hurry, can't they? Just so happy for you. Home soon sounds great!
Terre, I'm really excited for you moving into your own place, now in just a week! It will all get done somehow, and if it doesn't, it must not have been that important, right? Glad you got that "bank error in your favor" (isn't that what the Monopoly card says?)
Annie, Hugs to you and yours always! Did your back ever recover? Somehow I missed the actual post of what happened, but got the gist that it involved a lot of water where it wasn't supposed to be. Hope you are feeling better.
Rachel1, My mo has wanted a PET scan every 3 months. It varies with different mo's and how stable you are. I know what you mean about the radiation exposure. My July scan was good, so I pushed it to 4 months. If I ever made it to NED I think I would go to 6 months. But in the beginning it seemed more important to closely monitor my response to treatment.
0 -
A--such good news! I hope you mend well.
Rachel-my MO has me do MRIs every 4 months about to monitor mets in my spine. He said he was trying to spare me radiation. I think if he felt the pet or ct scan would give better info that was needed he would do it but for me right now MRI is good.
I've noticed many on this thread having "scans" and I wonder what type and then a lot of pets and cts and I don't really understand why one type of scan and not another. I can imagine they all have pros and cons. I sure someone here can explain it to us.
0 -
Auroaya, great news about your leg, what a relief! Hope you get to go home soon. Rachael, my onc does ct scans, usually every 3 months but she is very cautious regarding radiation so we have been pushing them off to every 4 months as long as my numbers are good and I have no new symptoms. I also wonder why onc choose the scans they use. I only had a pet scan when first diagnosed with stage 4. Onc says insurance won't pay for another one unless I have an abnormal ct scan. Have only had 1 bone scan also, onc says bone Mets will always show up on scan even if they are resolved, looks like a scar so difficult to tell which are active and which are resolved. I've never had a MRI...don't know why. How can you tell how active the Cancer is
0 -
Auroaya, I was so relieved to see your post this morning and hear your great news!
0 -
Hooray Auroaya!!! Prayers have been answered, on to health! Myra
0 -
Best news ever, Auroya! So thankful it was a seroma.
0 -
Re: Scans. I was diagnosed stage IV right at he start in Jan 2012 Been getting scans every 3 months or occasionally at 4 months if I proscrastinate.. PET scans cost more then CT so my insurance company will only pay for CT scans now, although my onc says she can see more on a PET and if neccesary she would push for a PET. Just got the results of my most recent CT and was told I am still stable.
0 -
Good morning all,
Aurora - I can't tell you how happy I am for you! That's great news! You made my day.
Rachel - My MO does CT & bone scans every 3 to 4 months. The other MO I had when mine was on mat leave did not scan me for a good 9 months. She did however request an US for vital organs during that time. It so happens that my neck mets appeared sometime during those 9 months. I, personally, would rather have radiation than having those kind of surprises. That said, I was dx'd stage 4 from the start so had no previous radiation. I wonder if docs are more careful when pt had the usual aggressive tx prior to receiving a stage 4 dx.
Lindalou - are you feeling better? I hear those kidney stones can be very painful.
Good week-end to all.
0 -
Linda E, Thanks for asking. The stone is still passing but at least it is out of my kidney and out of the bladder and on its way down. I'm having lots of lumbar/flank pain so my onc is fitting me in on Monday for an appt to discuss and see if I need further tests. The CT that showed my stone moving did reveal another lumbar fracture so that may be all that is going on.
Deanna, are you having a fun celebratory week?
NYC, Stable news is great.
Myra, Mallory pictures?
My best to all......
0 -
Aurora, I hope you slept well last night, I know I did after hearing your good news. I'm excited for you to go home and wishing you an easy recovery from here on out.
Rachel, I was scanned every 3 to 4 months, alternating between bone and CT but in August after receiving my CT scan results I was told I wouldn't be scanned for 6 months which will be February. That will make it 9 months from my last bone scan which was in May. That gives me anxiety but that being said onc said if tm's rose or I had any new pain they would scan right away.
Jobur you're so sweet and thank you yes my back finally recovered! After having to take Oxy's and do much of nothing. Never again will I attempt to do that myself, lesson learned, I guess everything happens for a reason. Basically my basement had alot of water coming in and I spent 6 hours sucking it up with a shop vac and throwing every towel in my house on the carpets to try to limit the spread. Then picking up heavy soaked towels, rinsing them in the washer, drying them and repeat, all night long. I should have called for help right away because I really hurt myself.
NYC, so happy to hear your last scan showed you're still stable.
Lindalou, how are you feeling today?
Hydranne, wow I can't even attempt to name us all anymore, you did great!
Wishing all my beautiful friends here a great and pain free weekend. Hugs to all, Annie
0 -
Seromas can be scary but maybe this will raise a small smile. After I had my lumpectomy in 2013, I was walking down street after work to meet my husband for dinner when I was suddenly drenched. I couldn't work out what had happened even looked at sky to see if there was a sudden downpour and got some v strange looks from passers by. I eventually realised the fluid had spurted from my breast and I was standing in my very own puddle - felt like I was in a scene from Alien. Needless to say I did not make it to dinner that evening!
Just out of hospital after a day of blood and platelets transfusions. Happy weekend all
0 -
Bosco, I ended up with a seroma after my lumpectomy in 2012, it sure looked awful and I was worried that I had an infection. Are you feeling better after the transfusions? I know you've had a couple now. Whereabouts in England are you? I have family in Surrey.
0
