Bone Mets Thread
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I have major calcification in rotator cuff and major tendinitis. Oxycodone does NOTHING for the constant throbbing pain. No sleep for 2 nights even with a bump of MMJ.
So bummed. Keep praying.
I have so much to do, but can't because of severely limited range of motion. I've been crying because of pain, and I'm usually pretty tough.
time to ice again.
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Momatt,neutrophils of 1800 can also be expressed as 1.8. After one week mine are usually .7 or .8 although once they were .4 (that was cycle one so they dropped me to 100 mg.). DH will be having a hepaticojejeunostomy to bypass his common bile duct. All those complications following his kidney cancer surgery last year, especially the pancreatitis and bile duct blockages followed by bile duct stents and infections, have caused a stricture and afistula in the duct. We were unaware until a couple of weeks ago when he suffered from nausea, vomiting, jaundice, and weakness. They tried to put in another stent, but the stricture is too severe. He spent a couple days at Brigham and Women's. The surgery will solve the problem and prevent future recurrent infections, liver damage, and other problems. I told him that he is only allowed to stay in the hospital for 5 to 7 days this time, not 3 months like last year.
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MomATT, Z has given excellent advice, as always... but I wanted to toss something else into the ring... I saw on another thread that Dani just started back on Xeloda, is that right? If so, she should not do any sort of water exercise, because of HFS risk. Water is a big no-no, and the friction from the bottom of the pool makes it exponentially riskier. Always bummed me out when I was on X because the pool felt absolutely divine with my extensive bone mets! If the treadmill starts burning her feet while on X, she could maybe consider trying a recumbent bike instead.
It's super challenging to find a way to move with extensive bone mets plus HFS risk!
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Mom - sono is a good idea if I don't get better. But I seem to improve each day, so I will roll with it for now. I was traveling last week. Travelling is hard on me now that I am no longer superwoman. Part of me thinks that stress and changes in food and water were what put me over the edge. I kept trying order something light in restaurants and instead getting food drowning in oil.
Now that I am back home with my own food, bed, exercise options and pets everything is falling back in place. One big change for me is how difficult it is for me when I get out of my home based routine. Used to be able to thrive on chaos. Even if I stay well, life will never be the same but it pretty good at the moment.
Wishing a sane and easy routine for you and Dany.
>Z<
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Lita,
I lived through rotator cuff hell too. You have to keep the ice going for the initial inflammatory phase of the pain. After a couple of days, switch to heat to increase blood flow to the area.
I had one of the percussive heated massagers that really helped.
Be very careful during this initial injury phase not to over extend the shoulder. It's boring to be sure, but treat your shoulder like it is made of glass. My doc had me sling the arm to rest the shoulder.
A week from now, start increasing your range of motion.
So sorry the pain meds aren't touching it. Sounds awful!!
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I haven't checked in for a bit; it's been a horrific month, spent mostly in my bedroom feeling super lousy while trying to recover from the cardiac tamponade that hit me 5-6 weeks ago (wow, scary stuff) and the pericardiocentesis. What is lingering on now is the blasted lung impairment that came with all of that. Recovery from this stuff is SO SLOW, but I just started to turn a corner about a week ago. The constant chest pain and coughing finally stopped and I can go off the oxygen for about 4 hours at a time now which is HUGE progress. Now if I could just get past the mysterious, drenching night sweats. BRRRRR.
Even after almost a decade with BC and all the crazy crises I have had, it's been a sobering shock to me how quickly I went from being active, traveling, chasing the grand baby, etc to being socked in bed on oxygen, unable to even go pee without triggering a coughing spasm that made me vomit, and all the while my ridiculously thick hair falling out all over the place. Then my husband got sick with a virus, and then our the adult daughter (who was coming over daily to help with food and light housework) got sick as well. They are mending now, thankfully.
I told my husband it's a good thing we didn't have flocks and herds because they surely would have perished from some epic plague by now.
Just got home from Taxol #4 and I believe I will try to nap while there's still some Benadryl in my system. All the best to everyone.
PS. If you ever start feeling like there's a heavy stone in your chest and you can't get a deep breath and the exhaustion just keeps building over days, GO TO ER. And be sure to call your oncologist and your PCP en route. Once in ER, keep on nicely asking for an echocardiogram until they do one if only just to make you shut up. And if they come back from the echo telling you it's pericardial effusion, don't stop talking about MBC mets in that pericardial fluid (making it a *malignant* pericardial effusion), even if the doctor and the ER cardiologist chide you for thinking such a horrible thing. And if those docs have a whopper Ativan brought to you because they think you just need to calm down and stop broadcasting your very ugly cancer thoughts, helpfully explain that BC patients know the difference between anxiety and self-advocacy, and tell them you will consider the Ativan only after they have conferred with your oncologist about the pericardial fluid. Boom.
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Lita what about medical MJ for pain have you tried that? I'm so sorry to hear you are having such a time damn damn. I'm hoping it will be resolved soon for you.
I hate to ask but has anyone heard from Patty?
Okay now thanks again to you all I can enjoy my day and stop thinking about my stupid head. Off to the gym screw cancer
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Hi Everybody,
I used to post on this thread but haven't been doing so lately. I have moderate mets to cervical spine, thoracic and now lumbar spine. I was on Ibrance and Faslodex shots but there was extensive progression. Now I am waiting for the oncologist to switch treatment plans to some other targeted therapy.
My main problem is pain, since I cannot take narcotics. Anybody found pain relief with non-narcotic medicines? I have tried Tramadol, mobic, Voltran, with little relief. Any experience with medical marijuana? I am working full time and would like to continue to do so, if only I can manage my pain!
Thanks a lot your support! I have been a member of this forum since 2008.
S3K5.
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Deanna,
Praying for good scans! Keep us posted.
Amy
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Lita, Just to be clear, did you already have rotator cuff surgery and this is now frozen shoulder? After I had rotator cuff I developed frozen shoulder and had to go through very intensive PT for 3 months. It was grueling as the PT had to break down tissue but I now have almost full range of motion. Or is yours calcification not due to surgery? Have you seen an Orthopedic surgeon? They are good at managing pain. I had a steroid injection in the joint which helped some, but I know what kind of pain you are in.
Lulubee, You have certainly been through hell. Thank you for enlightening us on the perils of pericardial effusion and giving us that heads up. Sorry you are dealing with this and I hope your recovery begins to speed up now.
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Lulubee - We've chatted by PM so you know I am very concerned. I am also laughing till I cry from your post. I really don't know how you do that. Thank you for checking in. Lungs are really tricky to heal and I can't believe you have to keep pushing through taxol treatments on top of this. I am afraid things will not be easy or normal for a while. Hugs and healing and keep us posted.
S3K5 - Medical marijuana works and NJ has a highly dysfunctional, but legal MMJ system. It's worth a try. The trick is managing the high. There are types of oil and strains of MMJ that are calming without leaving you stoned, but it is very individual and it can take a while to figure out.
>Z<
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Lynn - I'll take all good news! Enjoy your trip!
Vevs - So happy to hear you're NED!
S3K5 - Have you tried Advil or Naproxen combined with Tylenol? Sometimes 600 mg of Advil with 2 Tylenols every 6 hours will do the trick.
Lulubee - I hope you continue to improve, a bit better every day.
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Hi - I'm jumping into this thread after confirmation today of my bone mets. So far we know of two rib mets, one of the left side, one on the right. My MO wants us to start with radiation and see if we can zap these guys away. I have a chest CT tomorrow and brain MRI next week for staging purposes. Not sure how I'm feeling at this moment; I made it one year and four days from my recurrent diagnosis before moving to Stage IV. My mother died suddenly on Saturday morning, so I was already feeling a little lost. Anyway, I just wanted to say hello. :-)
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NancyHB,
I'm so sorry for all you are dealing with right now- especially the sudden loss of your mother. Big hugs here.
Sorry you have to join us, but you will wonderful information and support here. Come often.
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Wow Nancy, you are really dealing with a lot right now! So sorry for the loss of your mother. Welcome, I always say that you will learn more here then any doctor could ever tell you. Hang in there and jump in when you're ready.
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Nancy, welcome to the thread. I'm so sorry you're dealing with so much especially the sudden passing of your mother. that's rough. I have two bone mets that were radiated over a year ago, and so far they are still inactive, and that's what I'm wishing for you. Fingers crossed for good results on the CT and brain MRI. Big hugs.
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Linda, did not have surgery, but have had this shoulder deal b4, in left shoulder 10 years ago and right shoulder 12 years ago. When u get it again, its usually worse. This time is worst ever. Was able 2 work last with this. Ortho needs to consult with mo b4 we do shots. They usually don't want to do steroid shots when ur on cheMo because of compromised immunity.
Pain is worse than bone mets pain. Constant throbbing. When I move it even in the sling...oh God, just take me home now.
Vaping and edibles. Feel sort of high but still can't sleep, and that's the worst.
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All good news girls on last Thursdays blood tests and bone scans cancer markers gone from hundreds down to 37 bone scan showing healing mets and very stable to some areas showing little cancer mets at all . Signed off from oncologist for the time being and just going to his nurse in 8-9 weeks Under 35 forCA 15 markers is considered normal 😀I am seeing a Chinese herbalist atm and having acupuncture and herbs which are relieving my pain and fatigue
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Hello, Vevs
Great news!!!!!
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Lita, my heart goes out to you. You are right, you are tough ad an inspiration to all of us, but especially me. I admire your courage. Take care, be patient, this too shall pass. Blessings and prayers!
Diane
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Nancy, I'm so sorry for the loss of your mother. That's very hard no matter how old we are! I was older when I lost my Mom and it was still just the hardest thing to go through. Will be saying prayers for you. Also, hoping those two spots get taken out and no others for you!
Lita, I don't have any shoulder problems so don't know what you are going through, but can just imagine...because it seems we use our shoulders for almost all movement!!! Hoping and praying it gets better and you get some rest!
To the girls with good news, woohoo!!!! Am so excited to hear good news!
Ok I'm doing all right, hanging in here...I have a PET scheduled fir next Monday and will see the onc later so will have a chance to talk to him about palliative care.
Am trying to get in some movement, but wondering about resting heart rate...mine seems really low at 48...considering I'm older and overweight am wondering if that could be something to be concerned about? Will be talking to onc about that too.
Z....sending you big hugs and hoping you feel lots better very soon!!!!
Momall...how I wish my husband were still here...he took such good care of me last time I had cancer! My son is trying but I just can't burden him with everything as he has four kids and is already kind of over burdened! And daughter is so far away...no help there. So it is what it is...I'm just kind of on my own. Not what I ever envisioned for this chapter of my life but it is what it is
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Nancy - welcome to this thread but sorry for the reasons that bring you here. My condolences to you and your family. Losing your Mom plus this new dx is a lot to handle right now. We are here to support you.
Delvzy - Your good news put a smile on my face. Awesome!
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Lita that's just unbearable, so what's the plan?? So sorry that will keep you from doing what you like.
Deanna hoping you getting good news.
Hey Lynne you tell him! Wow it seems so sophisticated? How is that gonna affect his eating etc…Best wishes for you both! Yes now I understand about the Neutr it's ANC, Neutrophils Absolute right? Yes, that was 0.0 for Dani. I still don't know how they let her walk out of the office. The numbers were all crazy. But hope it's on the way up now.
Lulubee got it. Thx a lot. I can't believe that you while you are going through hell you are giving me advice. You didn't change. How did you get the tamponade, can they radiate a/t there to make thinkgs easier? Taxol is hard, that's for sure.Thank you for such good advice. I copied and pasted, I should have it. Wishing you a quick recovery.
Zar I understand very well what you say about the routine. I see for Dani it's very important also. We try to keep stress at a minimum. She doesn't waste time with conversations that don't matter, she goes to family events she wants, which is not many, e/o thinks she is such a snob, I don't care anymore. Her children, her small business and her cooking those are her priorities.
Nancy that's just crazy. So sorry about your Mom. And to have to deal with this now? But it's very good that you are having the scans done. Let us know.
Delvzy that's a bid deal, great. So no treatment at all in the meantime?
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Linda yes I stay on Femara atm and lots of continued prayer and Chinese medicine and acupuncture. The Chinese medicine after 9days of that and acupuncture most of my aches and pains have halved. You know that feeling girls when you wake up and feel 90 well that is going.
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Nancy - So sorry to hear about your Mom. No one can replace her. Also sorry to hear about your dx. As others have said it isn't a club we want to join. You are so welcomed here. Great ladies and the best information I've found on this thread from people who are living it. I hope you will find it helpful! Post any questions you may have...someone will know the answers!
Delvzy - Good to know the acupuncture, Chinese medicine and prayer are helping you feel better! Good news is always welcome :-)
Mom and Dani - Hang in there! You are right, it has become necessary to focus on what is important and to let the rest of it go. Living each day, managing the medical stuff and staying ahead of pain takes up a lot of time.
Lita, Linda, Deanna, Granny and Gracie - sending hugs ((( )))
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Avascular necrosis in both hips.
Doctor says it is caused by the anti estrogen therapy that I have been on in one form or another for years, plus the Xgeva. Also the radiation to the hip did not help.
On the other hand, the cancer was in the sacro iliac and apparently there are spots in the hip and femur. So the cancer does not help either.
Can you say damned if you do and damned if you don't?
Does anyone have a solution to this? What did you do? Does anything improve it? Anything at all?
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I'm allergic to morphine, dilaudid, and now oxycodone.
My doctor suggested medical marijuana (it's legal in my state with a license).
Has anyone tried pot? Has it helped with the pain?
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Congratulations on the great scan and markers, Delvzy! And interesting and encouraging that your onc is stepping back some from your care based on your TMs.
Nancy, what a crappy double whammy for you! I am so very sorry about the sudden loss of your Mother. And sorry you need to be here, but glad you've found us to lean on.
My bone scan didn't show any significant change (although I did learn it was never NEAD in the past), but abdominal CT picked up some yet indistinguishable things in my liver -- possibly the source of my sharply rising TMs over the past few months. So it's onto a new tx. for me, as soon as I decide which one from those suggested. I'm not surprised, especially after Amy, Wendy, Linda and others recently got similar news. I"m just mad and frustrated that we are all dealing with this!
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So sorry for the necessary change, Deanna. I hope a clear new plan comes quickly!
Yes, it seems like many of us are in a new chapter. Ugh
Hugs!
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Hugs Deanna. Not what I wanted to hear. Interested in hearing what your options are and what you plan to do.
Gracie - good to hear from you. Way to push for treatment. A resting heart rate in the 40's seems low, but I am not sure if it is good or bad. Interested in what you learn.
Delvzy - great news.
Mom - I am so glad to hear Dani is beyond caring what other think.
Lita - thank you so much for thinking of us when you are in so much pain. I am glad to hear from you, sorry the news is not good.
Thinking of everyone on this thread. Especially those in pain and dealing with scans.
>Z<
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