Bone Mets Thread
Comments
-
Raven, when I first started Zometa, the general discussion with MO was a year at every 4 weeks, then if things were going well, move to every 3 months. I just hit the one year mark and was hoping to make that move. Unfortunately, while I am still considered stable, a couple of bone mets are what I call "blinking", disappearing and then reappearing on the scans. For that reason my MO is continuing me on the 4 week protocol. From that perspective I'd say your move to every 3 months a good sign.
My heart is broken about Patty. She was such a bright light and today is a little dimmer without her.
0 -
Hi Janine
I had “the talk “ with my oncologist today. After all I’ve been through and all the SEs I have now she feels chemo will do more harm than good. It wasn’t an easy discussion at all but I agree with her. I’m more concerned about QOL for whatever time I have left. So palliative care has been called in for me. BC sucks
Babs
0 -
No, babs. This is not okay! I mean, I respect your decision, but selfishly I’m not ready to watch another sister run out of options..
0 -
Babs, I am sorry for the news you received today. I know that I will hear those same words someday,and I can imagine how you are feeling. You have always taken the time to plan and experience as many joyful special moments possible. You and your family have built wonderful memories. You are part of an amazing family that is filled with love and smiles and hope. It goes without saying that you have had a hand at making that family and each individual member special. I hope that palliative care brings positive things into your life. Please keep us posted. I am lifting you and your family up in prayer.
Yes BC SUCKS BIG TIME! I hate everything about it.
Hugs and prayers from , Lynne
0 -
Janine- I would also recommend trying Xeloda. I find it quite tolerable, and it's working for me right now.
Babs-You are at a juncture that we all will face and I am sending you love and holding you in the light.
Love, MJH
0 -
Oh gosh Babs! I absolutely hate that you had that conversation. I know also that all of us will eventually be in your place! I just want to give you a big hug. I pray palliative care can help you feel better so you can spend as much time as possible with your beautiful family. You are, and will remain in my prayers!!!
0 -
Babs,
You are so brave! I understand how you are feeling. Quality of life means something. But, I hate that this is happening to you. As, I am sure, do you.
Heavy sigh. I think of all our ancestors, who survived plagues, and lived to make our lives possible. We are dealing with our generation's plague. It seems as soon as we banish one, another springs up to bring us sorrow.
If you need anything, holler. We are all here for you.
Jennifer
0 -
Babs. I’m so sorry. I sincerely hopethat palliative care gives you the QOL you need to continue to make special memories with your family during the time you have. My thoughts and prayers are with you.
Pat
0 -
Oh, Babs, how hard. My heart truly aches to hear this. I'm so sorry. Please keep talking to us and let us hold you up anyway we can. Hugs and prayers for comfort and peace.
0 -
Babs, There truly are no words to describe how sad I am to hear that. While I completely understand the QOL issue, my heart is breaking that you are at that point. I have been in awe of your grace and love for your family. Your love just radiated through in every picture of you and your family!
Please keep us informed of how you are doing and I will continue to hold you close to my heart in thought and prayers.
I HATE CANCER, just hate it!
Claudia
0 -
Hugs, Babs, and lots of love as you make decisions
0 -
Thinking of you Babs, believing that there is another treatment option is what keeps me going, so my heart breaks for you!
0 -
Babs I'm so sorry to read about your predicament, but I understand your decision. Hopefully you will benefit greatly from palliative care. I will pray you continue to enjoy your life and family for a very long time regardless of the situation.
Stay strong and positive. Like they say: it’s not over till the fat lady sings....
Big hug....
0 -
THE CT showed sclerotic changes which he says are a sign of meds working and wants to push back now to 3 months on the Zometa. I was a little concerned but we will talkonmonday so he can explain.
Thanks for the info
Raven
0 -
I've had scattered bone mets that have resolved with chemo over the past few years, but nothing major. For weeks now, I've been having what I've assumed was sciatica pain (I've had bouts with that for years) and have been doing my usual stretching and ice packs, but nothing seems to help for long except taking NSAIDS which isn't a great idea daily for a number of reasons. I have a PET scan next month, my last one showed no activity in the area of my pain, but the level of inflammation (if that's what it is) has greatly increased since then. I hurt when sitting, standing, and walking. It is disabling me unless I take meds. If this is actually bone mets instead of sciatica, would Ibroprofen be working on the pain and would the pain be 24/7? I'll know more after my scan, but I'm curious about your experiences with bone pain. Would an over the counter NSAID be working if this is bone mets in my hip/sacrum instead of sciatica? Thanks for any input or observations. My MO is aware of what's going on, but it's gotten worse since my last visit.
Something that may be causing the increase in inflammation and pain is that I started on Faslodex injections in August. Those are heavy-load intramuscular injections in the buttocks.
0 -
kathysmith, you might want to try some natural anti inflammatories to see if they can reduce your pain.
I have greatly benefited from soaking in warm baths with 3 cups of Epsom salts. From the daily ingestion of omega 3 fish oils capsules, and a magnesium oil spray I massage into the painful areas when I experience a breakout pain.
A reduction in sugars and simple carbs in my diet works for me every time I experienced additional pain, that's usuallycaused by lactic acid, a byproduct of cancer cells metabolism.
I also use a 25 mg fentanyl patch that has no noticeable SE
I hope you get relief soon.Take good care....
0 -
Babs-I'm so sorry. I'm sure I will get there one day. Quality over quantity. It's been 6 years at stage 4 for me, and I'm on my 7th different treatment. The last one almost did me in, but I did it for over a year with all the nasty side effects. I'm not sure I could do a chemo like that again. Big hugs!
Janine-I was on Xeloda, for 2 1/2 years (my longest treatment yet). The only side effects I had was the foot and hand peeling, but it only lasted the first few treatments and of course the usual fatigue. I took vitamin B6 100mg daily (I still take it) for the foot and hand peeling, and I also used "Udderly Smooth" lotion in the morning on my feet and hands, and Aquafor ointment every night and put on cotton gloves and old socks until it was absorbed. It was an easy treatment for me. You should try it, and you have awful side effects, you can always change or stop. I intend to keep going, unless the side effects are worse than my last treatment (Taxotere). The side effects with that are awful. I stayed on it over a year.
Raven-I got my Zometa, every month for 2 years, then once every 3 months. I'm still on it 6 years later. I'm getting it next week with my chemo.
Kattysmith-I can only take tylenol or tylenol based pain killer, since I'm on an arthritis med. It doesn't do much for pain. I have mets in my hips, pelvis, spine ribs, skull, etc. I tried the medical marijuana, and that doesn't help either. I don't like taking the prescription pain meds, because all they do is space you out and not take away the pain. I just use Lidocaine patches on my lower back, deal with the pain from a compression fracture that is to high to have a kyphoplasty to fix it. I am sick of the pain. I had Faslodex as my first treatment. I hated those shots! I'm a side sleeper, and I couldn't sleep on my sides at all. It worked for 1 1/2 years though. I used to come home and put ice packs on both hips. It could be what is bothering you. I remember it being painful for weeks. Hugs!
I went to have chemo yesterday, and my white cells were too low. It's only happened once before in these 6 years. I now go next Fri. My tumor markers jumped over 300 points from July until last week. They did them again yesterday. They are keeping and I on it. I leave for a 2 week vacation in October, so I won't have my next CMF treatment until November, My oncologist said that they wait until after the 4th treatment of this before the do scans. I have those mid November. We shall see...
Hugs and prayers!
Lynne
0 -
babs, I have no words. Please stay here and let us know how you are and how the palliative care is set up and how it helps you.
0 -
Does sudden elevated Calcium of 10.5 when 10.2 is max indicate progression? Also, my wife's BUN is elevated at 31 when max should be 25.
I would really like some comments. She had a PET scan yesterday, but the results won't be in until Monday or Tuesday. Her latest blood test had those two items elevated, whereas the previous ones were within the correct levels.
0 -
Oh my Kattysmith, you sound like me in February. I went from pain in the lower back to not being able to walk in a matter of days. I had high inflammation-anti inflammatorys were useless- and an array of fast onset of symptoms. I wouldn't wait but call your doctor and complain like hell. If it's not mets you have nothing to lose but if it is you can lose bowel and bladder control. My pain was in the lower back(sacrum, iliac, tailbone and hip-5 tumors along sacrum/iliac joint) I don't mean to scare you but after what I went through I can't stand the thought of someoneelse waiting like I did. Take care and post how you are , please. J
0 -
Mike, calcium extremely high when my bone mets were diagnosed. Immediately put on steroids for inflammation, and zometo to clean up the calcium. Please let us know her results. J
0 -
NED! Wife's PET/CT scan results. NO METS, OMG! And today was her birthday. She is (was) TNBC with extensive spinal and hip mets. Tried Xeloda and it failed after 18 months. She's been on erublin (Halaven) for last 4 months with two push infusions for two weeks then a week off. She'll probably have to stay on it for a while to get rid nasty lingering buggers.
0 -
Babs, I’m hope the palliative care decision gives you many pain free days ahead. Sending you hugs and prayers.
Kattysmith, I have had a bad time with sciatic pain. I thought it was mets but none showed up on scans.All Mersin the other side. Finally got to orthopedistand / therapy. My L4-5 are a mess. Lots of inflammation. I could barely walk. It has occurred to me that I was getting Faslodex shots on that side for 6 months. The last one was cold and the nurse was very tentative. I’m wondering if that didn’t start the inflammation. Up until then I had very little pain with the shots. Who knows. Hoping you get relief soon.0 -
Katty...I'd get a hold of you MO. I lost full bowel control b'cuz of progression in the sacrum earlier this year, and it was NOT fun. I waited too long to tell my MO, and I wish I hadn't. Losing bowel and bladder control can happen in a matter of a couple of days.
I still have to wear depends even tho it's improving just a little bit...so I'd take this seriously if I were you.
Lita
0 -
Katty, my bone mets definitely are helped by ibuprofen and the pain is worse sometimes than others. One thing that always made it a more definite on being mets is my onc says if it keeps you up at night. Always best to check. That being said of course not all pains I’ve had have been due to mets. I just know that if I had been louder to my dr at the time I could have avoided a major surgery with my hip/femur. It wouldn’t have changed my cancer outcome but catching it before it got so bad would have been much better.
Worrying won’t help a thing, I know that’s easier said than done but try not to and worry the drs instead;)0 -
Hi Katty, I just had a big increase in right hip joint pain, which I have always thoughtwas arthritis. In the last two weeks or so, its increased dramatically, such that, as you said, getting up or sitting down, and episodically when walking, I have major pain. Turning over in bed is even getting painful.
As to Faslodex, I had my first injections yesterday, so the hip pain is independent of the fulvestrant. I would call asap, as Lita and others said. I am going for a hip mri next week. You have been a hiker, I recall, so even more important to preserve mobility. Thinking of you, Mame
0 -
Thanks all! I am having a PET in October (had my last one in July) and am hoping this pain is *just* a perfect storm of sciatica, resistance to PT exercises (ordered for a knee injury & sciatica...) , and Faslodex! The Faslodex injections don't hurt me, but I do get a knot in my gluts and that may be additional pressure on the sciatic nerve.
Miowmix - I do take turmeric and might get my hands on some CBD oil. I don't want the Ibuprofen to wreck my stomach lining or stress my liver (I have liver mets).
Chef47 - so far, I don't have pain when I am sleeping or it is so minimal that it isn't waking me up
Best,
Katty
0 -
MIKE! Wonderful news! Celebrating with you and your wife today!
Mary
0 -
So sad to come on the boards today and read about Patty's passing. My heart goes out to her family and friends. Thank you, Madelyn, for cross posting. I hadn't gotten over to Patty's thread yet this morning.
Babs, I'm also sorry to hear your news, but keeping you in my thoughts and hoping the palliative care works wonders for you to allow lots more quality time with your beautiful family. Please keep us posted on how you're doing. Hugs.
Mike, hooray for your wife's excellent PET results!
0 -
Babs,
Once all the poison from chemo leaves your body, you'll feel so much better. No more damn SEs!
May you have MONTHS of the very best QOL to enjoy your family.
Love and hugs,
Lita
0
