Bone Mets Thread
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After my first Zometa treatment, I was exhausted and slept the rest of the day. The next day, I had a 102.4 fever. The fever lasted for 10 days, decreasing very gradually over time, despite taking ibuprofen. Also experiencing joint pain and back stiffness (although that could just be the metastases in the spine).
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What exactly does it mean to be NED? My ONC doesn't use that term. I know it means No Evidence of Disease but what is meant by that? I have one tumor that was on one of my lower vertebrae which was radiated and is stable (not progressing) but other than that no other tumors or even lesions. One of my antigen numbers is in normal range and the other one is just 2 points above normal. To be NED do you have to have no tumors at all, even if they have been killed (as much as one can tell), and do your markers have to be all in the normal range? My son wants me to get to NED (that's his greatest hope) but I don't even know what that really means. Congrats to all who are NED and I pray that continues.
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Readroan,
You are in the throws of the worst of this chemo I think. I did continue to lose more hair and just shaved my head to be done with it. I couldn't stand the clumps coming out in the shower any longer. My hair didn't grown back till around 6 weeks after my last chemo. It came back white and curly, with gradual color coming back (what there is, its now salt and pepper but I'm 58). I didn't like wigs either so I learned some awesome ways to tie scarves from youtube. I went to thrift stores and found lots of pretty scarves for next to nothing. I made my own earrings and did makeup to make myself feel better. Also took the ACS Feel
Better something like that, my chemo brain can't remember the exact name of it, that gave away free makeup and we got tips on how to draw in eyebrows, etc.Keep posting here, I'm not sure if I answered any of your questions, so hopefully others will be along to answer. Be easy on yourself, take naps, rest, drink lots of fluids, and any other ways to pamper yourself.
Hugs, Linda
You have been through so much lately, just hang in there as I think nearing the end of chemo you will start to feel more stable emotionally and physically.
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Rangermom,
Thank you for your response. I am not sure what is going on with me but way thankful for your input. I am only 49 and my hair had not turned gray yet so I am very worried about what my hair will return like.
I am starting Physical therapy tomorrow in hopes to return to work soon. I have to have income. So that is my plan this week , on Monday, but am so tired I cant think about it, I made bars and bannana bread today and dishes and am pooped . What a puttz I have become. Not happy about this either.
Onc wont say how many treatments, and am waiting for scan on oct 14th, hopefully will know more then. If he dares to share!
Orthopedic surgeons say I can work whenever I feel like well enough too. So helpful they all are.
There I go complaining again, Thankful for the info about you not liking wigs either, I am so hot and they itch me and make me warmer and they just don't look like me.
Had chemo last wednesday was feeling great until today. Slightly nauseated, no vomitting though which is great but I hate that feeling as my first tx was awful, second was good, this one was good until today. So looking forward to tomorrow! On to a new day!
Thanks again. Maybe i will find me again in all of this!
Redroan
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Hi Redroan,
Just wanted to say that I also had to fight for physcial therapy and it has really changed my life. I went from limping around to being able to walk for over a mile again. I admit I am not yet up to my precancer pace (4 miles/hour with two dogs on leashes) as I can only walk one dog at a time now and I can only go about 2-3 miles/hour but I believe that sticking with the PT will get me back there. I have always been on the heavier side although not quite "overweight". The PT has toned up my arms and people are actually making comments and telling me that I look good! (If they only knew -- I have told very few about my cancer diagnosis). Good luck to you. I hope it is as successful for you. They started me in the water (afraid of having me fall and break something since I have such extensive bone deterioration) but now have moved after a month to 2 sessions in the water and one on land each week. I enjoy talking to the other patients (most of whom have back problems) in the pool and I like the PT as well. I know this sounds strange but doing the PT also makes me feel like I am doing something to "fight" the cancer. I get so depressed by the statistics that everyone throws around (average survival after diagnosis) that just knowing that I am doing more than taking pills, doing something that I control has really changed my quality of life. I have even started trying to replicate the water exercises at the local JCC one day on the weekend (it is a challenge since I need to walk in the water at a depth up to my neck and that means dodging the swimmers who are trying to go up and down the lanes). Hang in there - I'm rooting for you!
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20130502,
Thanks for the support.
I am anxoius for PT tomorrow.
Redroan
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20130502, so glad you were able to get PT ordered for you. Redroan, good luck tomorrow.
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Physical Therapy was good, at least it helps to know I may get some improvement. But boy did this day wear me out. I am whipped, not sure if it is just a busy day or chemo! Is everyone so tired on chemo or is it just me? Thanks everyone. Redroan
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Redroan, I'm with you..chemo knocks me on my butt. I don't have too many side effects except that darn fatigue. The constipation has been pretty much resolved with colace and miralax. Plus lots of water! A few bone aches from the monthly Zometa. But otherwise I'm handling the treatments pretty well. I'm on my 12 Taxol treatment and it just exhausts me to no end. So I thing extreme wearing out is normal, but not fun.
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Best to Nicky and Rangermom. Caryn - I'll be in Rotorua (aka RotoVegas) in October. Be prepared for the smell - kind of sulphur/rotten egg smell because it's very geothermically active. Kind of like Yellowstone in that respect. I don't mind the odour, but some people complain. I think it's a prettye city and Tauranga is lovely.
I still don't know why the onc has stopped the zolodex. My GP faxed him and asked if the onc was aware that he wouldn't see me until Nov. Haven't heard anything back, so I guess it's all good.
Redroan - what a time you're having! Not fun at all. Don't know if you've seen this: http://news.yahoo.com/cancer-survivor-posts-time-lapse-video-of-treatment-204001044.html
The woman in the video took pics of herself daily through treatment, and you can see the changes. And yes, her hair is back at the end of the video! It's scary and heartwarming to watch.
I had a pin put into my femur from hip to knee, so I totally relate to the crutches thing. Of course, I overdid it and ended up in agony. The orthopedic surgeon had a good laugh at my expense. And then, when I was down to zero crutches, I did it again! Ended up sore as. And terrified that I was sore because it was cancer instead of muscles. So I'm sure you're right about your left leg pain. I was up and full weight bearing (but with crutches) the day after surgery, but was amazed at how much muscles atrophy in a very short time and how long it takes them to come back. Glad PT is helping you! It really helped me.
Take good care, all. Good thoughts to all of you!
Terre
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Thank you!Thank you! Thank you to all of you for your help. I am so glad i am not just going crazy!
I have another question, I know its not related to the mets but its related to the chemo for the mets. Has anyone else had a strange smell in there nose? I do not have any funny tastes just a funny smell all the time, can't figure out what it is , so blaming it on chemo,
Well off to do my exercises and enjoy the day
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Hi Redroan. I am not on chemo currently, but when I took TAC, and later Abraxane, I would smell something that reminded me of cigarette smoke. There was no one smoking anywhere near........strange!
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Redroan, chemo does effect both taste buds and the sense of smell and can sometimes take a while to return to normal after chemo is done. Glad you are getting some PT as it will definitely help you.
Love n hugs. Chrissy
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Hi Team!
Does anyone have bone mets to the skull?
--Sandy
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Evening my dear sisters. It looks like there is suspicious lesions in my liver and one lymph node in my lung on the CT scan results I got today, more tests are needed to confirm the radiologist said. So not the good news I was hoping for but still could be fine. I will talk to my onc tomorrow to find out the next step, MRI I think it will be or maybe now CIGNA will approve a PET. Thanks for thinking of me during my scanxiety week. As someone else said, "the fun never ends."
Linda
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Rangermom, so sorry to hear about the possible progression. I'll pray that they're wrong and that you get PET that you need.
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Rangermom, Hope you get your PET scan, I hate insurance and how they can decide what the Dr should do for testing. I hope al comes back ok for you.
I had another dumb day. Decided I am a more anxious person then I thought, I think I had an anxiety attacke today, Short of breath with activity, saw Medical physician , labs and cxr ok, so I guess I am just crazy. Slept rest of afternoon, Still don't feel normal but I am trying to get it myself put back together. Had chemo last wednesday so was trying to blame it on that but I have now decided, I am just crazy!
Thanks for letting me vent. Redroan
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RangerMom, I'm very sorry to hear that it wasn't more positive news. I'm hoping your insurance carrier agrees to the PET scan, and that you receive better news. Thinking of you!
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So, the radiation to my spine messed me up more than I expected. My small intestine is inflamed and the stomach pain and loose stools kept getting worse, so now I'm in the hospital. I've been here 2 nights already, getting pain meds, fluids and potassium.
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Praying for you Rangermom and Beth.
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Rangermom and Beth, thinking of you both, hoping for treatment that works and fast recovery from harsh side effects
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Thank you! so beautiful. I'm waiting to hear from the onc on what test we are doing next. I'm trying to be patient, you know how that is.
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I do know. I hope you can get a PET soon.
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Ranger mom, so sorry for your news. I'm thinking of you.
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You are bnoth in my prayers.
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Hi Rangermom,
I'm sorry to hear about your scan results. I hope your insurance company approves the PET scan this time, and that you get good news from that or from whatever test they end up doing. You'll be in my thoughts and prayers - keep us posted.
I'm going in tomorrow afternoon for the results of my scans that I had on Monday. These are the first scans since I started treatment for Stage IV, so I'm anxious to find out what things look like. When they checked the tumor markers in August, they were down quite a bit, so I'm hoping things will look good on my scans too. I've been having a lot of pain in my left knee lately though and wondering if anything will show up in that area - I'm hoping it's from the Arimidex or Zometa, not progression.
Beth, you are in my thoughts and prayers also. I hope you're feeling better and home again soon.
Amy
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Keeping my fingers crosed for you Amy. Beth, hope each day you are feeling better and home resting.
Linda
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Linda, hopefully you will get that scan quickly and on with treatment. Everyone here is wonderful and I know it would be much more difficult to get through this without you all. God Bless, Kathy0 -
If CIGNA approves it, I have a PET scan scheduled for next Wed and an MRI of liver for next Friday with a onc office visit scheduled between the two tests. Whew! I'll be busy next week. Thanks for your kind thoughts.
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Hopes it all works out, Linda. Love your new pic, you look pretty and healthy.0
