Bone Mets Thread
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Patty, Glad to hear that you are home and beginning to get your strength back. There's nothing quite like being in your own bed in your own house to help recovery but rem to take it easy and not to push yourself.
I'm sorry to read about the pain from your compression fractures. I hope you are able to consult with a pain management or palliative care doc and get some meds to help with the pain. I have a couple of com fractures in my spine also and I'm on fentanyl patches, lyrica and oxynorm for break-through pain. Lidocaine patches might help also? Take care, hugs xx
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I hope you get your answers Sharon.
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Kiwikcatmom, Romansma, dunesleeper, pattypepper, dlb823, myra1211, lindae54, sandilee & anyone else I may have missed, thanks again for sharing your experience with pain & what's working or not working, for you. This is going into my third week dealing with this. Went in today to see what they would prescribe for pain. The Lortab, Lidoderm, Tylenol, etc hasn't been working. Baclofen helps with spasms but still have lots of pain. So, they prescribed valium at night for spasms & Mobic for pain - suppose to be a long acting NSAID. Little concerned about taking an NSAID while on chemo & risk to platelets & bleeding, but will try it. Also scheduled for MRI this week, in addition to my CT. So for my week off chemo, I'm making it up with scans and PT!! The PT is a mild massage to help calm things down. So, time will tell. Get all results on Fri.
Patty - so glad you r home - take it easy!! Don't overdue.
Sandilee - the 23 yr survivor so inspirational, how I would love to be her. Thanks for sharing that story.
dlb823 - hope your pain has calmed down. Valium in same family as the Xanax, so hope it undoes the spasm & works for you, as well!! Problem is, longer I'm in pain, the more tense I am & the more spasm - vicious cycle.
Take care everyone ... thanks again.
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used to take 10mg Valium for TMJ spasms SyrMom. Worked like a charm, hope you have the same success
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hey ladies. Stay tuff. Have a great day.
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Hi people, first post here. Im advocating my my wife, Rachel.
Brief: 36 yrs old, Stage IV at Diagnosis. Primary Tumor left breast, lymph nodes, 5 bone mets.
6 cycles: Docetaxol-Herceptin-Perjeta. Surgery (complicated with skin involvement), 18 nodes out, 35 rads.
PET scan showing clear bones after chemo (6 months ago), but 3 tumors are back last week, three of the originals. Illiac arc, L2 Vert and sternum. Tumors are small.
We have been sent back to chemo, but we are fighting for the SBRT procedure. Rachel's performance is very high, we can do chemo, but why would it finish the job this time when it did not finish the job last time?
We are in Dallas, and rather private, but I would love to hear how you fighters got into the Gamma Knife procedure, it has not been recommended and I feel like it's time to push our own advocacy here.
Warmest regards dear people.
Doug.
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SharonA-- in regard to your situation with the AI's and arthritis, I can share my experiences. With my first dx 9 years ago, I took tamoxifen for 3 years and then my MO recommended Femara. It was the worst 6 months of my life! I have extensive arthritis and the Femara made it much worse, plus caused other problems. I switched to Arimidex and after a few days, my arthritis was again much worse. I went back to tamoxifen for the rest of my 5 years. With my new dx in January, my MO put me on Aromasin and Xgeva injections. I have had no issues with the Aromasin except some mild hot flashes, and the Xgeva actually seems to be helping with arthritis pain. I asked my MO about it and he said Xgeva helps with bone pain so it very well could be what is helping the arthritis. I have bone mets in areas where I have arthritis already, so I'm going to ask him this week if having the arthritis there makes it more likely to have mets there or is it coincidence?
I know they can drain the Baker's cyst, but it often comes right back. It takes time, but it's better to let it resolve itself. I have had both knees replaced, so I know what you're going through with knee problems. So sorry you have to deal with that on top of everything else. I hope you get some relief soon
Sharon
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Hi, Doug ~ I just wanted to say, welcome, although I'm so sorry your wife's mets is the reason you've found us. I don't have specific answers to your questions, but when you say, "... back to chemo," is it the same chemo or a different regimen? Either way, it never hurts to get a second opinion, especially when you have nagging, unanswered questions.
As far as gamma knife, it seems you hear about that mostly for liver, brain mets, and other soft tissue cancers. Not sure about its use for bone mets, but I'm sure others here will have more input. (((Hugs))) to you and your wife. She's fortunate to have you. Deanna
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Thanks db,
This new chemo is single agent - Paclitaxol, weekly for three weeks, one week off..... repeat for three cycles. Re-scan.
We have a Caris and Foundation One that validates the strong response to the first treatment, the details reveal the it was the Docetaxol that did the good work. Paclitaxol is very similar, we expect positive results, but exceeding the initial round? we are not so sure.
Mayo Clinic - http://www.practicalradonc.org/article/S1879-8500(13)00212-9/abstract
Curative theory: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC399537...
MD Anderson treats Bone Metastasis: http://www.mdanderson.org/publications/oncolog/pre...
I'm reminded of the story with the man in a flood who climbed on top of his house as the water rose....and he prayed that God would save him..... a boat shows up and says "get on board we'll save you" the guy says... "I asked God to save me, I'll wait".... Then higher water and another boat, same thing, then higher water and a helicopter..... same questions same answers. When the flood takes the man on the rooftop away, in heaven he meets the Lord and says.... " I asked for you to save me, why did you not answer?" God says,..... " I sent two boats and a helicopter for you."
At this point I feel like we are dealing with the really nice people that built a house that can hold back the flood while the water rises, I'm looking for the guy with a boat.
regards to all,
Doug
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Hi Doug. I'm in Maryland and have had 2 different once. Neither mentioned gamma knife. Best of luck to you.
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Welcome to BCO dfwDM, We are so sorry that your wife is dealing with bone mets but glad that you found us. Let us know how she does and how you are as her support. The Mods
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Doug - it is my understanding that bone mets are treated sparingly with radiation to preserve the bone marrow. Your wife is going to need all the blood cell generating abilities her marrow can muster in this game. Now, if there is limited volume, and/or your wife is in pain, then gamma knife or radiation seems to be more likely.
I had some rads to my hip to preserve mobility. I had some radiation enteritis (nausea/bowel troubles), but the pain did resolve quickly and I never had to quit my daily walks.
In Stage 4, there's really no "finishing the job". It's more like cancer whack-a-mole. And, different chemos can have different effects. I did Taxol for a year, and am still benefiting from the good job it did at putting out the fire.
Believe me, we are all looking for the boat. I hope your and your wife find yours.
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Welcome Doug. As the others said, sorry you're dealing with this but glad you found us. You'll find a boatload of support and knowledge here.
Didn't Annie have the gamma knife procedure? Doug - someone will pop up who's had it done.
Blaine - cancer whack a mole! Love the visual that gives me! You're so right.
SharonA & Sharon - Arthritis R Us. I'm on Femara and have arthritis. I take generic Celebrex and it helps a lot. I ran out a few days ago and there was a mess-up with my prescription, and boy do I miss it. Thought it helped, but didn't realise how much until I stopped taking it. Almost fell down getting out of bed this morning because my horribly arthritic knee wouldn't work.
IBC - no liver mets. Hooray!!! Will be interested to see what treatment's next.
Patty - hope today is an even better day for you. Glad you're on the mend.
SryMom - hope you get some relief from the meds.
Dune - Hope the rads are continuing to go well.
Hugs to all,
Terre
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Sharon and Terre, thanks for sharing your experiences. I take Xgeva shots every 3 months and Anastrozole daily. I see oncologist on the 23rd, I will ask him about the association of arthritis and bone mets. I can't take Celebrex, Ibuprofen, any of the anti-inflammatories, they really challenge my stomach and GERD, yup, I have that and Barrett's esophagus too. I have seen some people post about using Curcumin, I may see if my stomach can tolerate it. Blaine, I love the whack-a-mole analogy, it seems that's what we all do to some extent. Doug, welcome and hugs to your wife Rachael. I too had an initial diagnosis of stage IV breast cancer (I just found out there is a "term" for it: denovo MBC). I had lymphoma and beat that and my old oncologist missed (or ignored) my complaints about increased fatigue and back pain. I have infiltrating lobular carcinoma, the sneaky one. I'm am now going to a breast center which is the best move I ever made. I understand you want to do something, my husband and I felt that way too. It seems that in my case (ER+/PR+, post menopause due to early onset menopause from the RCHOP chemo for lymphoma) the best treatment at the moment is a little pill that blocks all estrogen production. I had a 8 cm tumor and extensive mets to cervical, thoracic and lumbar spine as well as my sternum. After 3 months, breast tumor was 1 cm. After 6 months, all tumors were dormant. After 1 year's PET scan, I got 1 new met in a site that previously had arthritis, everything else clear. To me, the most important thing I can do is to be my own advocate, lean on these wonderful women on this site and go to an oncologist I believe in. I hope you and your wife are getting that kind of care and are in the place you need to be.
Take care everyone,
SharonA
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Doug, I took a look at those articles, and the first one, from the Mayo Clinic, concludes: Stereotactic body radiation therapy is a feasible and tolerable treatment for non-spine bony metastases. (By the way, not sure I'm reading the same research article now I saw earlier when you first posted the links. For some reason, that one isn't working for me now.)
I don't believe either of the other two articles mentions gamma knife (which is not the same as SBRST) pe se, so not sure if you are specifically asking about gamma knife. The institutions that have invested $4 to $5 million in gamma knife units are no doubt trying very hard to expand what they're used for, so I would proceed with caution if gamma knife vs. other targeted RT is what you mean.
Blaine, thanks for the very humorous whack-a-mole analogy!
SharonA, I've noticed with curcumin that there's a wide range of quality. Some brands cause tummy issues, some do not. My favorite (after not being able to tolerate some) is by Life Extension. Taking it at bedtime also seems to help prevent indigestion issues. Deanna
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So...I am just going to whine. Not health related really, but mental well being. We were told a week ago that our rental house is on the market. So we've started sorting and going through things because we know we're going to have to move with relatively short notice. I can tap into my KiwiSaver (like a 401K) on 15 May and use it as a deposit on a house to buy, which we're hopeful for. But I can't touch it a day in advance of 15 May. Once the house is sold, we'll have 42 days to move, but the realtor selling the place said he thought we'd have several months and could negotiate something with anyone buying the place. So, I haven't been in a total panic.
However, the rental property manager came over for her inspection today and said that the realtor has complained to the owner (who's in the UK) that we've been "less than helpful" in getting the place sold, that we have boxes all over and the house doesn't present well because of us. He also said our cats have destroyed the carpet. Which isn't true; there's a heavily damaged area of carpet that was like that when we moved in, which the property manager concurs with and which we have pictures of prior to move-in.
Anyway, the rental property manager got a letter from the owner giving us 90 days to get out. Which ends up being on my 60th birthday. So I'm feeling really shattered about this whole thing. I've never been asked to leave a rental place. Ever. And while we're leaving anyway, this is just absolute rubbish.
So, please send us good thoughts in getting financing and finding a place to live.
I know compared to the stuff everyone else is dealing with, this isn't a big deal and I'm being a bit of a two year old. But I'm just having a bit of a pity party...I feel like I deal with so much stuff already and I really don't need this.
Hugs to all,
Terre
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I sure will send you good thoughts, and you know what? The perfect place will be waiting for you. You'll see.
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Terre, so sorry to read about your housing troubles. The fact that you are allowing people to walk thru your space is being very cooperative in my opinion. Are you supposed to be packing without boxes? In my experience that is pretty difficult. Good luck, hope you find someplace even better to live
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Oh Terre that's awful! I don't know what your tenant/landlord laws are there, but here you can dispute an eviction for another 90 days. Not that you would necessarily want to, but it may help you with a closing date for a house. Can you talk to your residential tenancy board & find out what your rights are?
Hope everyone else is doing ok.... I'm still sick as a dog, haven't been on the boards much. Another Dr appt on Thursday. Some folks have told me that they know people who have had this horrible thing I have, for 2 months. ack, I can't handle 2 months. GG
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I'm sorry you are still sick GG. The idea of this bug hanging around for a couple of months is, in itself, enough to make me feel sick.
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Oh Terre, I'm sorry you're going through this. Finding a new place and moving is a already a stressful event - you don't need that rubbish. I don't know the rules in NZ, but can the owner legally request that you leave within 90 days? Do you feel comfortable with that window period?I truly hope you find a place of your own that you'll love (with your named plants LOL). You'll be in my thoughts and prayers for sure.
Hugs - Linda
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The thought of another $60 bottle of narcotic cough syrup is enough to make me throw up! Tho it does make me sleep!
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GG...Sending healing thoughts your way. So sorry you're still so sick!
Thanks for the kind words Dune & GG. Just needed to whine. I know it will all work out for the best. We can't extend things here; our rental property manager is up to date on our rights and negotiated for as long as possible (the 90 days). The 42 days after sale is apparently NZ law. I think I'm mostly upset that someone could be so mean, deceitful, and nasty. He was super nice to our faces then went behind our backs and is basically getting us tossed out. It's apparently not an eviction (which involves the courts, etc), just a termination of our rental agreement. So we're basically getting tossed out, but not evicted if that makes sense.
Anyway, I will stop bitching and get on with things.
Hugs to all,
Terre
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Hello to all,
Wow I really feel out of the loop here, been away for a couple days. Patty, so happy you're home after that long hospital stay, hope you're feeling much better.
Terri, when a ct scan for my ovaries in June of 2013 showed a spot on my liver everyone was in a panic thinking liver mets, however I already knew it was a hemangioma from an unrelated scan 5 years earlier. Boy were they relieved and when they compared it to the previous scan it was evident it was the same size and same location.
Doug, sorry to hear about your wife's bone mets. Terre is right and I had radiation to all of my bone mets, although it was Cyberknife not gamma knife to my rib and L5 in addition to Stereotactic body radiation therapy (SBRT) to my sternum and humerus. 5 treatments in total to each met. My ct scan in February showed all mets healing and bone filling in. My rad onc proposed this procedure to me as I had less than 5 small bone mets and wanted to treat them with 'curative intent' as is stated in the article you posted. I hope this helps, if you have any other questions I'm here to answer them. Best wishes to you and your wife.
Terre, bugger about you having to move in 90 days and to boot on your birthday! You have every right to have a pity party but I'm having a good feeling things are going to work out great for you and dh and this move may be a breath of fresh air for both of you. All my good thoughts are going your way.
To everyone else here, hoping for pain free days and successful treatments, hugs, Annie
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Terre,
Many years ago we had to move out of a rental house because the owner wanted to sell it. We rushed around to find a place we could afford in a reasonable location, and then the rental stayed on the market for months! I still remember what a pain it was to uproot so suddenly, and that was when I was young and healthy. I wish you luck with your house hunting and hope you find another great view. A little whining is called for, the way you're being treated, but it's hardly like a two-year-old, or you'd be having a full tantrum.
The countdown is on for our trip to Australia and New Zealand and I hope we can meet in Wellington on April 2. I'll PM with details.
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This thread is moving so fast tonight by the time I posted my novel we're on to another page 😀
Dee, really hoping this nasty bug leaves you real soon. 2 months would be too long so praying you get much needed relief.
Carpe_diem I'm a little jealous you might get to meet Terre, wish it was me but so happy for you! Have an awesome time!
Hey Dune, how are the rads going?
Hugs to all, Annie
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Annie, thanks that's what I wanted to hear. We just have these three small (about 1 cm) mets, they are much smaller now than when they were found before the first chemo. I did manage to get an appointment with the head of this department with Texas Oncology. For us, performance has been very high, WBC's have stayed high, physical activity in place, diet and lot's of prayers.
I did not know how the SBRT/gamma knife group would respond to my direct call to them, they did in fact respond. I'll know more soon and might need more advice on getting the system to move and get us this treatment.
We fight on.
Doug
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I'm definitely having less pain in the areas receiving radiation. I have a few more treatments to do, and the radiation onc wants a spot bloodwork check this week. I look forward to learning the actual results.
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Dune so glad you're feeling some relief from rads, I found as more time passed the pain decreased even more. Best of luck to you!
Doug whatever else you need to know just ask. The SBRT was very powerful, I had tumor flare pain in my humerus and it caused some esophageal issues from the rads to my sternum but that has all since improved. I pray everyday that it knocked those mets into oblivion. The Cyberknife to my L5 and rib was a long procedure. 2 hours laying motionless on the table where a robotic arm came around and delivered very precise zaps to each of the mets. At the end of the 2 weeks I felt quite exhausted and aside from the tumor flare pain and esophageal issues I have healed nicely. I am quite pleased with my last scan and so is my rad onc and mo. Best of luck in getting the treatment you need for your wife.
Hugs, Annie
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Moving is a stressful thing, in my book. When the circumstances are a bit contentious, that makes it even more so. Whine away and I will thing positive thoughts for you.
Caryn
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