Bone Mets Thread
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Susan, back to chemo? Doxil, Navelbine? I'm currently on Doxil and I still have my hair. Not sure what my next step will be either.
Stefanie
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Gumdr I have severe rib pain (my first symptom $ and besides being on Endone and Targin I have acupuncture every 4 weeks in that area to soften i
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Delvzy - Been thinking of you and praying for you continuously. How is the WBR going?
Gumdoctor
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me too Delvzy! How are you holding up? It is good to see you posting here. If you are up to an update, would love to know how you are doing.
I have a neck MRI this Friday. I don’t intuitively feel like there’s any cancer in my cervical spine at this time (was originally at diagnosis).
I was in a pretty bad car accident 2 months before my diagnosis - car was totaled. I was saved by amazing airbags. I had started seeing a chiropractor and getting massages regularly to treat my neck injuries but never had any imaging done...and then received my bone Mets diagnosis and stopped treating with chiropractic work. I still get massages regularly. However I have encountered lots of neck pain still, and both my arms will ache and hurt at night when laying down. And both arms fall asleep pretty much every night.
I’ve gotten an amazing new mattress and amazing new pillow. But still issues. So finally getting an MRI per my MO so we can rule out cancer before I start working with a physiatrist or doing PT. I am excited to finally get all of this going.
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Hi all....praying you are all well and feeling good today. I’m not on here a lot and I have to go back and read from where I left off every time to catch up.
Gumdoctor...one GOOD thing about your new fashion accessory, you only have one!😉 I try really hard to look for the good side in all things. (Not that you don’t.)
I’m beginning to think my right side chin, face numbness and now swelling and feeling “full” might be ONJ. They had seen on a scan in the past few months that it’s started. The problem is, I don’t remember which side it was on in the report. I’ll have to go back through my records and look. Could ONJ possibly pinch off the trigeminal nerve and cause the face and chin numbness? Also, I’ll be having another scan in about 6 weeks to check on the tumor between my inner ear and brain to see if it’s growing. If it is, it comes out. I have probably told that here before. My memory is getting worse. I got out in town one day and couldn’t remember how to get home.
Anyway...to everyone here...it might be a good idea to check on the “Proton Therapy” they have in Knoxville, Tennessee now. It’s been going on a few years and from what I’ve heard, they’re pretty much curing progressive cancers. (I could be wrong by being given the wrong information.) But it would definitely be worth checking into.
I live only about an hour and a half away from Knoxville. So, if any of you would like to get an appointment to check it out, you’re more than welcome to stay in our cabin or apartment to save you some money. I’d even be willing to travel down there with you if you’d like.
Delvzy...I’ve thought a lot about you and have been praying for you. This treatment might be something that would benefit you.
Anyway, love and prayers to all! And big warm hugs today as it is only 19 degrees here. 😩 I hate the cold
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TNMTNGAL - Yes thank you for pointing that out! I had already realized it as I was negotiating going down the stairs, wondering how I would ever be able to do it if it were both feet!
I am learning about ONJ for the article I want to write. It seems there are just so many variables and the literature is so basic and cookie-cutter like. I had intermittent symptoms of pain and numbness in my left jaw and face for more than a year. My previous MO blew it off, like so many other things. I made it to an ENT and he claims I have a huge accessory parotid gland. It swells on and off and compresses 2 nerves in my face and jaw along the way. These symptoms improved on Ibrance but nothing lit up on scans. I have a hard time buying what the ENT said because I have a trust issue with med providers (from Army's failure to dx and recent MO who blew me off for so long). But I will accept it for now and focus on more pressing things.
My point is this is such a tough diagnostic dilemma and so little is known on a large scale. Your kind of jaw pain is diagnosed and treated on a truly case-by-case basis.
I will continue praying for you and learning about this clinically. God is in charge.
Gumdoctor
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Gumdoctor...thank you so much for the prayers and info! Yes!! God is truly in control! I’d love to read your article when you get done! Love and prayers!...and warm hugs!
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Susan,
I can attest that you can certainly fracture your sternum as I have a fractured manubrium (the top bone of the sternum's three) right now from a car accident in November. Might be that you pulled some cartilage that attaches the ribs to the sternum when you sneezed. I have extensive mets to my ribs and every once in awhile I'll pull something there and it's hurts a lot. Hang in there...this too shall pass!
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Gumdoctor, have you been offered Kisqali? Worked great for me as firstline treatment for bone mets. I am also on monthly infusions of zometo which have really been helpful whenI was diagnosed metastatic . You can read more on the combo on kisqali/femara thread. Keep us posted. Jo
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JoE - no on Kisqali. I just finished cycle 13 of Ibrance/Faslodex. If MRIs show progression, new MO will be discussing options soon. Hoping for longer with I/F. If not, we will see what she recommends.
Gumdoctor
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Hi Girls just checking in, We are in the middle of one of the worst heatwaves ever in Australia 🇦🇺 and I am just hating it. Tomorrow is going to be 46 which is 124 degrees in your country !!!!
I have finished WBR which wasn't pleasant but better than I thought .
I am no
managing to walk about 3km before it gets too hot and that is helping with depression which set in at this diagnosis,
The Onc after initially telling me that chemo was optional has encouraged me to try Enrubis )sorry about spelling) which is a 30 minute infusion 2 weeks on 1 off as it may reduce the tumour cells in the brain lining and bones and liver,
Thanks for all your prayers I believe I am doing better because of them xx
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Does anyone else suffer depression and what helps ?
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Delvzy...I’m sure everyone here has dealt with depression at some point. I know I have. Getting outside helps a lot, but with that kind of heat...wowwww! I find that painting, sketching, coloring books, just anything being creative helps a lot. Do you have any hobbies? Also, they can give you meds for it. I’m on Wellbutrin and a few others, lol. But the combination of everything has helped the most. Try treating yourself to a massage. That always works for me if I have a really bad day. Lots of love and hugs to you!!! And still praying for you!
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hi delvzy,
I definitely realized I was depressed about 1.5 years out from my diagnosis.
I have started Lexapro 10mg and it is working incredibly well for me.
Many people with a stage 4 diagnosis do take antidepressants and find them incredibly helpful.
I also see a psychologist either weekly or every other week, meditate, sleep as much as I need to, exercise as much as I am able (a huge spirit lifter!) and cry as much as I need to.
I started this thread about antidepressants because I was nervous about starting them, maybe you will find it helpful:
https://community.breastcancer.org/forum/8/topics/867583?page=1#idx_27
It is perfectly normal to struggle with depression with this disease. We are human not made of steel.
Sending you love and hugs and cold weather breezesfrom Philly.
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Delvzy,
I am so grateful to hear from you and know you made it through your WBR. Continuing to pray for your strength to get through this and for peace of mind.
Gumdoctor
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124 degrees F!
Bendigo, my wife is triple negative (had been ER/PR+ but it changed). Xeloda (Capecitabine) failed her so she was put on Halaven (Eribulin). Within three infusion cycles all traces of her extensive mets to spine and hips were gone. Her Dr. kept her on Eribulin for the full eight cycles. So far she's had 2 clean PET scans at 3 months apart. Right now she's off all chemo and is NED. I don't know what might or might not work for you but was just relating what seems to have worked for my wife.
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Delvzy, I have been dealing with clinical depression off and on for over 40ys. This runs in my family, mom, aunts, nieces my son. etc. My depression has to do with a chemical imbalance in my brain. Yours, IMO, is situational stemming from cancer diagnosis. That's much easier to tackle. Definitely see a psychologist who deals with cancer patients. You need someone to talk with who understands your feelings. Meanwhile, tools which help are no negativity, don't read the news if it depresses you, drop all negative-toxic friends. And most important control your thought life. Refuse to sit around thinking how bad your situation is because it feeds your fears. Find enjoyment in the small things. Live in today, in the minute. Don't think about what the future my bring because you don't know. Try not to be along too much. Get out of the house as much as possible. Focus on what you can do, not what you can't.
You believe in God, so talk to him. Every morning write him a letter. Tell him what's hurting, whats bothering you. Tell that you cannot handle it and are laying it at the cross. Then take a rest from worrying as Our Lord will handle these issues for you. All you have to do is ask. And trust HIM. He will do it.
Depression is rubbing you of your daily joy. You're alive today. Celebrate it. And pray honey, our Holy Father is just standing there waiting to help you. I pray that God shows his grace and mercy on you today, and give you peace which only He can give. You'll get through this, one day at a time.
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Ah Snooky,
I sent Delvzy a PM and said similar things in my own words. I ask God to give each of us the strength and peace of mind we need to get through this journey.
Gumdoctor
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Gumdoctor
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Cervical and thoracic spine MRI results are finally in. Had to wait over a week and had to nudge new nurse coordinator to get results into the portal...
Not surprisingly, results show much more involvement than was previously seen with CTs. One area specifically lines up with the new scary pain I started having a couple months ago. What MRIs do not really show is whether something is stable or not. Since previous MO was not imaging this, we have no frame of reference to compare to.
Next appt with new MO is on the 4th of Feb. Will be interesting to see what approach she will take. I predict she will take the watch, wait and re-image in 3 months approach.
Also we will be discussing adding Xgeva or Zometa. Someone (not me) needed to do their job to make Tricare commit to covering either and that finally happened. Yay. So I do have options.
Have been soaking up the glorious sunshine in my sunroom this morning. Even though very cold in the midwest, there are moments of beauty and joy.
Gumdoctor
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Gosh, I feel bad sharring my good news.
My PET scan is back and the mets in my clavicals and shoulders are completely gone, as for the rest, they are all still there but it says "there is a marked difference" in all of them. My MO was excited and said the radiologist told him it was a fantastic difference. I needed this good news so bad right now.
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Big Peaches, Congratulations!!!
Never feel bad sharing good news!!!!!!! We all celebrate with you and makes us ALL feel better.
Yay!!!
Gumdoctor
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Woo hoo got good news!!' Mike thsnks you for sharing your wife's story with the chemo
Judy xx
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Delvzy...yayyyy on the good news!!🎈🎊💐
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Big Peaches, Very Happy for you. Congratulations.
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Gumdoctor
Cold in Midwest is putting it mildly. We're going below zero tempts and up to 25 winchills. Makes you cold thinking about it
Feb 4th is my big day too. After three months on Ibrance my breast tumor shrank and a lymph node shrank but my bone and lungs mets are increasing.. So tues. we did a biopsy to see if tumor is still positive with Her- .She also is running tests to see which targeted therapy's would work for me. And to send sample off to Foundation One,, whatever that is. This has been a long month. I'll be thinking and prayin for guidance for your doctors on the 4th. Wishing you all the best.
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Thank you Snooky. I will be thinking of you too.
Gumdoctor
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I'm thankful for everyone that shares their experiences here- good bad and otherwise! It helps me so much to know I'm not alone on this journey! For me, I don't have any family members or friends that have been down this road so these boards have gotten me off the ledge many times!
It sounds like February 4 is a big day for a lot of us. I am having my first set of scans since this Dx and since starting my current tx plan. I'm hoping things are working and I might get a little peace of mind!
Cheers
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Gumdoctor, perhaps you will be a candidate for vertebroplasty. I had that outpatient procedure under general anesthesia performed by an interventional radiologist in two spots with tumor ablation in another area. The technology available to us is amazing. That was last November, a few months after my big surgery - a five level lumbar fusion just prior to Labor Day.
Like you, I had new pain (between my shoulder blades) which correlated with a scan. Once I read the narrative report and saw where the upper spine was involved, it was a relief to have a consult and get it fixed.
Nice job on the PET results Peaches! Snooky, hope you don’t have a copyright on your advice for fighting depression because I’m tempted to cut and paste it - maybe in a private message to myself...
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Wonderful news Peaches. It gives us all a lift to learn of good news. Wishing all you Feb 4th girls good luck.
Meds sure can help depression. Therapy too. I go to a mets group. It’s wonderful because everyone there seems to get it. It’s sad sometimes but I am honored to be part of this true support group. Maire0
