Bone Mets Thread
Comments
-
Awww, Linda, I'm so sorry. I can so relate to everything you said. We just have to keep in mind, as my UCLA onc said, that this is a marathon, not a sprint, and we're all going to have good days and bad, ups and downs. I also seem to cry ridiculously easy these days -- not for myself so much, but just at stuff on FB or sad news stories. Maybe it's our meds or lack of sleep?!?! But I sure hope you get some relief from your additional pain. Do you think it's the Femara?
I also wanted to say, welcome Chattykat. I think I missed welcoming you earlier, and hope I haven't missed anyone else. It sounds like we have similar extensive spine mets, so I know what you mean about trying to go easy on your spine. I just carried a load of laundry maybe 100 feet and swear it felt like I'd moved a refrigerator.
Rachel, glad to hear your NP is on top of things. It sounds like it got pretty bad. Fingers crossed this one will be much easier.
Dune, how did you do after your day at the fair? Hope you aren't suffering from it today. And I got a laugh out of your comment about your peppermint oil order coming with a fine looking man! That sounds like a great idea!
0 -
So sorry about ur pain linda. I hope u are feeling much better very soon. Myra
0 -
hey hope! Thanks for checking in. So sorry you have felt so bad! I pray this is not your new normal. Hopefully random virus #13 and it will go away quickly! Also, remember how good getting extra fluids can make you feel! If your sodium is low or other level etc etc, maybe that will be an easy fix. Fingers crossed
0 -
Not catching up! Need to get to sleep. But just wanted to say I use DoTerra's Deep Blue on my bone met pains and it does help a bit! It has peppermint and wintergreen oil in it.
0 -
I resigned from my job last week and we are now operating on a very reduced income. We will be fine with savings and my husband's salary, but will definitely need to be much more thoughtful with money. So literally, in the four days since I resigned, our furnace/ac has blown and this morning my husband backed into the neighbor's car. I get it, I'm not in control. I think I've learned all the lessons. No more barriers need apply. So we laugh and hug and march on. Life is crazy, but I will fight with all I have for every moment of it.
0 -
Sorry bluefrog. If it makes you feel better, I crashed my car the week I found out I was stage iv. It's tough. Hugs
0 -
Hey Bluefrog... as soon as I got my diagnosis in June my daughter fell off of a swing and crushed her wrist, my husband got rear-ended and my son had a near fatal accident in a crazy intersection the totaled the front end of his car. No, we are not in control but I feel the same as you... message received... enough already!
0 -
Wow bluefrog, txmom and Chatty does the universe get it? Enough already!!
Linda, I am in the same boat as you in terms of pain. Crying and it's getting worse. Lots of breakthrough meds. My onc knows about it as I called today, took extra breakthrough fentanyl and still in pain. Lots of Deep Blue on my neck and back. I really really hope you and I and everyone else feels better. It is hard to be positive in this much pain. Oh and I'm at work to top it off.
Ibrance 100 mg should be coming in the mail tomorrow so I will start again immediately; I feel like I had a psychological good effect from it the last time I started it. I'm hoping at least the Faslodex and Xgeva are doing something, right?
Hope, I'm sorry to hear you are feeling so unwell and NO this cannot be the new normal. Please get yourself back to the doc and please smoke some marijuana if you have it available and are open to it. Peppermint oil inhaled is also good for nausea but won't be enough.
HUGS and LOVE to everyone
0 -
Hello all! I'm so sad to read that so many of you are having pain & things in your life that are out of control. I debated posting pictures of our trip but I hope that it gives some reassurance that things can get better as I was having major problems with pain & gastro intestinal issues only a few weeks ago.
We had a wonderful few days away going up to northern Vancouver Island, only a short drive for us. The wilderness surrounds you & makes you feel so insignificant, but it's great!
Pulling into Alert Bay on the ferry.
The big house, built in 1966
Me in front of the traditional burial ground which has no headstones, only totem poles which are allowed to rot & fall to the ground without any intervention.
This is the world's tallest totem pole. I had to turn the camera sideways to get it all in, except that a 10' section had fallen off in a storm a few years ago. DH is standing beside it on the lower right.
Linda, take care, I hope you get some pain relief & yes, we're fine, the storm really hit Vancouver, but luckily we just got a bit of much needed rain & a bit of wind but surprisingly for us, no power outage.
Take care all, I hope everyone is able to get the relief they need. Cheers, Dee
0 -
Carla, it certainly is a roller coaster ride, one we want to get off of. I kinda feel the same way. I know I'm sick of taking pills. I have taken so many supplements every day since 2012, and I finally had it. So, I stopped for a couple of weeks, just took prescription meds. Besides that, I was disappointed (and scared to death) that the Taxol didn't work and that the cancer spread to my liver. Then I was put on the Genzo-Carbo combo, and there were clear signs that it was helping, and I was so happy. Hopefully it is still, and I'll find out Friday, after my PET scan Thursday. However, those nodes are bothering me. I think my liver is giving me some pain. So I'm basically running back down the roller coaster. At least I have an idea of what comes next if this has stopped working. It seems I'm running through treatment options way too fast. Then again, the test may show good things happening. And so the beast keeps me ever vigilant. I apologize for talking about me, but that is really all I know. I just wanted you to know that I think I have an idea of how you are feeling. I am sad with you.
Deanna, thanks for the compliment (that I amaze you), but you know how it is. We have good days and bad days. I did what I could to prepare for the Fair, because my friend was coming from 2 hours away AND bringing her granddaughter. I am her mother's god mother. Anyway, Bobbie has done a lot for me, even coming here just to take me out to lunch. I really wanted to let her know that I appreciate that. Normally, I wouldn't have gone; and certainly I wouldn't have gone with the rough week I had building up to Saturday. God helped pull me through that. Even when sick you have to put out whatever effort you can to maintain good friendships. What I am REALLY saying is that fortune smiled upon me and gave me a good day to be able to meet my friend at the Fair. This week will be a good week. It is my week off chemo. I guess I'm going to have to put together that backdrop for the reunion. Sixty-some tiles. That's what it takes to make a 6-foot backdrop. It was supposed to be 3 feet wide, but I had to print it this way to keep from distorting it. Anybody want to play puzzles with me? LOL. I hope you recovered quickly from your day out with dh and that you get out more.
I was actually doing a sort of skipping through the house yesterday. I felt completely well. Today I had a hard time getting out of bed. In fact I'm still there. However I will soon change the birds' water and hop into the bath.
HopeFaithCourage, my favorite tea(s) is Tazo tea. Vanilla cream is a nice one, especially with honey. There was one I liked even better, but I have forgotten. I'll look it up. Green ginger is good. Oh yeah. There it is: Chai. Tazo Products I sure hope you got good news from your onc today.
Annie, your bridge is breathtaking. I could become mesmerized by that in a hurry. Total relaxation. Also, you mentioned rubbing the oil on your hands. Another good reason for that is to get rid of (or overpower) that odd odor no one else seems to smell. Do any of you olfactory hallucinations from the chemo. It is strongest for me the next day plus three. Then it fades away, but OMG! It's the worst smell. I can't even identify it. I started putting peppermint cream under my nose, like they do when doing autopsies. It does help.
Hope, it really could have been a virus. My girlfriend keeps saying she thinks I had a virus last week. She had had it the week before, but it only took her down about 2 days. I had a mouth full of fever blisters all week, and I only get them when very stressed and when I have a virus. So, it is going around, and it will pass. The new normal may only mean that we don't bounce back as quickly as we used to. Best wishes for a good report from your onc.
Rachel, good for you. They do have very happy faces. I bet you had a wonderful time, even while feeling sluggish. OMG! I just noticed that sluggish is based off the word slug. Well, dang. I'm no slug!!! Hmmmm. Going to have to rethink the use of THAT word. Good luck on your 2nd infusion. Remind us so we can slip into your pockets and keep that D away.
Wendy, yes, I certainly had a crying phase. At the drop of a hat the tears would come. I cried watching a show I like, when this woman died. They made her up to look like she was dying and I had noticed earlier that day that I looked really bad. I looked like this woman who was dying. So I had a little cry. Watchadonnado? You have to feel your emotions. We all have to experience those stages of grief. When we come out of it, we are calmer and more accepting of whatever plans God has for us.
Gaia, where did you go to school for yoga and body building? The way you say things is the same as the way I was taught to look at things when I was in acupuncture school (TAI Sophia). I might have to get my notes out, because I have certainly not been looking at life without attachment and judgment lately. Your post is a reminder to me to get back on track.
Great picture shorty, uh, I mean LindaLou. LOL.
Chattykat, it truly is amazing how quickly cancer can travel! Beyond that, I really don't know what to say. I should be out doing something, but I am still in my PJs and in bed. I don't know what I can do anymore. I worry about my bones, too. So that stops me from doing things I used to do, and that has led to muscle wasting, which then makes everything exhausting. Ugh!
Linda, you know I sometimes (couple times a month) get all over pain that my pain meds couldn't fix. I often feel slightly feverish at those times, so I started taking ibuprofen or aleve. Voila! The pain went away. It's an inflammation. I encourage you to try that. It's unbelievable how all these hard core pain meds could never touch the pain. Then I take an anti-inflammatory and feel 100% better. Whatever you choose to do about it, I hope you are successful.0 -
Gorgeous gorgeous photos Linda love it!
Dune, maybe I will take ibuprofen today. I didn't think of it and maybe that will give me a kick I need to feel better. Thanks!
0 -
cjanet, My MO recommended taking an ibuprophen & a tylenol together. I found they worked much better than narcotic drugs, strange but true for me. Dee
0 -
Ibuprophen and Tylenol also works best for me... I always start with Tylenol... wait an hour and if I don't feel better then I take two motrin. If that doesn't work I use the topical Lidocaine patches. I love those... but you can only use them 12 hours on 12 hours off. I try to use them during the day when I need to be up and about more so have to do something different at night. I have my handy dandy heating pad next to my bed.
0 -
Wow...I have a lot to catch up on and I should be working. But wanted to say thanks for the beautiful pictures! Stunning!
Also, I saw a poster type thing on Facebook - "They say what does not kill us makes us strong. Dear Universe: I am strong enough. So you can stop now!"
Feels that way somedays. Glad you can laugh Bluefrog - it's the only way to roll with this disease.
Sending hugs,
Terre
0 -
Hi all,
Thank you all for your good wishes, we certainly understand each other here. Only WE get it.
Deanna - I don't think it's Femara. I suspect my calcium level is high. My next pamidronate infusion is on Wednesday, that will lower it. This overall body pain, severe constipation, nausea and upset stomach happened in the past when my calcium level goes up. The crying bit is not caused by the calcium though LOL. No point in wearing make up these days!
Cristina - glad to hear you had a good trip. Here I am complaining about my pain, when you have so much pain and work on top of that! You have all my admiration girl.
Dee, those pics are awesome and happy you're feeling better.
Dune, I totally agree with anti-inflammatories - I take them daily along with Tylenol and narcotics and it makes quite a difference.
Romansma - Thinking of and praying for you.
Thinking of you all but too tired and doped up to address individually. But you are all in my thoughts and daily prayers.
0 -
was ableThank you for the tea suggestions.
I finally will have health insurance. Some long term stable care! ! I I'm so relieved! It b is effective tomorrow!
0 -
My oncologist said we would wait for a scan to show progression before I start chemo. He said radiation was treatment for mets in sternum. Sounds wrong when I read others treatment. ??
0 -
Hi Gaia, dlb823--you were discussing St John's Wort upthread? If you by chance, take Ibrance:
From breastcancer.org: "You should not take St. John's wort, an herb that is sometimes used to control depression and anxiety, because it can decrease the effects of Ibrance."
0 -
blue frog, try to get Social sec disability. Sometimes it pays fast . Lots of paperwork, but usually good to stage iv peopl
0 -
HFC, it does not sound right to me. My onc gets riight on it. When the Taxol was shown to be ineffective for me, she swapped treatments that day. My next Taxol infusion was due for the following Monday, but she had it changed, so I had Gemzar-Carbo that Monday. As miserable as they make me, I would be very uncomfortable putting off treatment.
0 -
Does bc.org have any information about foods to avoid when the cancer makes itself entirely too comfortable in your liver? If someone can point me in that direction, it would be great. I will look for it in the meantime.
0 -
Hello all you wonderful souls! Not too keen on the virus theory anymore. I've been sick for a full 12 days now and I noticed the fever this past Wednesday. That's 6 days with a low grade fever. It's only 99 tonight, but I feel weak all day. I was at urgent care, but it was for my youngest son. He fell in PE and hurt his ankle. Needed X-rays and crutches, so that took most of my day and all of my energy. I was able to get my labs done while I was there, so that's good. I will email my MO, but I see her on Wednesday.
Hang in there everyone. Wish I could address you all individually, but my energy is so low. I will be thinking of you!
0 -
Wishing you good luck with your MO and hope they get to the bottom of this fever/low energy thing Hope.
Sending hugs to all,
Terre
0 -
oncologist appt rescheduled for wed for when I have insurance coverage. I'm so sorry there is so much pain and sickness. My dear sweet husband believes the pain will stop and I will recover from it and the exhaustion. I'm afraid that I may not. When he talks about the future Ithink to myself I hope his next wife can give him all those dreams. How's that for stinky thinking.
I'm working on rag dolls for Christmas. I'm a beginner sewer and it's fun. I needed a hobby.
Love and hugs and peace to us all
0 -
Anyone know of a cure for rude sarcastic teenage sons?
0 -
Romansma, I am so sorry about how you have been feeling. I'm wondering if it is the Xtandi causing this for you, I don't know if that is a possibility but these drugs can do terrible things to us. I'm glad you were able to get your labs done and hopefully that will give you some answers. Is your son ok? I hope it wasn't anything too serious. Sending you big hugs and healing energy.
HopeFaithCourage, I'm so relieved that you'll have insurance coverage and see the oncologist on Wednesday. Once you start treatment I'm sure it will help with your pain, I totally understand your thinking though, I'm sure we all have these stinky thoughts. Sorry I don't know of a cure for rude sarcastic teenage sons, I can only pray he sees the err of his ways. Wishing you the best!
Hello to everyone else here, I can't address everyone individually as I am not feeling well. I had an infusion on Friday and for some reason this time it has affected me very badly. It was my pamidronate and I talked to my onc yesterday and she is putting a call into the pharmacy to see if something may have been changed in the preparation of it. Maybe it's because I am only getting them every 8 weeks now instead of monthly, we don't know. She said if it happens again we may have to switch to Xgeva. Day 4 and I'm still not feeling the greatest.
Hugs to all, Annie
0 -
HFC, I'm afraid not. Certainly my mother was never intimidated or impressed by his antics. Whooped him with a belt she did -- and whooped me for good measure.
Post a picture of some of your ragdolls. I have a needlepoint I abandoned years ago. Maybe I will start that again.Hope, it wouldn't hurt to email your MO to give them a heads up. I do hope you feel better soon.
My mother made an appointment at Advanced Radiology. When I asked why, she just said that her doctor ordered it (MRI,CAT, PET - she acts like she doesn't know. I'm guessing it is to check out her lungs. We both cough too much these days. I figure mine is from the cancer in my lungs. I figure the same for her. Ugh! I know I'm getting ahead of myself, but 2 cancer patients in one house is going to be tough. Besides, I cannot imagine her leaving me. Sucks! However, all I really know is she has a cough and frequent basal cell carcinomas and she is trying to schedule her scan to be on a treatment day for me. There is an Advanced Radiology across the parking lot.
For me today it is acupuncture at 11, followed by a visit to Office Depot Copy and Print. I'm going to pay them to print that backdrop for the reunion. It takes 63 tiles (8,5x11) to make a 6' by 4' backdrop. My printer isn't cooperating and my stack of tiles looks awful, especially toward the end. I ran completely out of a brand new ink cartridge. That's my project for today.
0 -
Hope, so sorry you are feeling so crummy. I hope you get to the bottom of this and your son is better soon.
Annie, sorry you are feeling crummy too. I know I have to hydrate a lot before my xgeva shot. Did you drink enough this time?
HFC, I tried knitting as a hobby for a while, failed miserably. Made me more anxious then relaxed. I need a hobby too.
Dune, I hope your mother is ok. I know she is your main support system right now. Fingers crossed.
Terre, any word on your house yet? Sending good wishes.
Well, have a good day all and good wishes for everyone with scans and onc appts. Coming up. Myra.
0 -
Hope- Could it be the Xtandi giving you fever, nausea? Hope your MO appt goes well and that you get an explanation/plan.
Annie- Hope your pain is better today. Hug to you.
HFC- Many of us have had radiation to bones before chemo. Will you be seeing a RO as well? He/she may be able to address that for you. That has been my first line of treatment since I was first diagnosed with mets. Teenage boys are tough. I remember my son at that age, he wanted to move to Alaska! I say send your son to school where he can be snarky with his friends. I taught junior high and high school for many years so I got to see a different side of teenagers at school.
Dee- your photos are so pretty!! Is that a Miata you have? I had a 1996 one that I loved so much. Keep traveling! I keep forgetting the Ibuprophen/Tylenol combo. I will try that today.
LindaE- how is your pain today?
Dune- You've got a lot on your plate right now. Relax at your acupuncture appt. ( as much as you can)
My nurse just called and my MO wants to see me nest Tuesday after my Faslodex shots.....trying not to read more into that. I get 2 shots every 4 weeks. Anybody else get 2? I always get such bad migraines so we may go back to 1 shot.
Hi to all I've missed......
0 -
Happy Birthday LindaE! Wishing you a wonderful day today and many more!!
0
