Bone Mets Thread
Comments
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Glad to see you back Terre, we missed you & your kitties.
Thanks Loves, Letmywifelive & Linda (and Lindalou via PM) for your suggestions regarding the bone pain. I haven't done anything out of the ordinary, I pretty active, walking, gardening, I used to run but can't anymore. I had the pain when we were away, so I thought it was just sleeping in strange beds, but we've been home for almost a week & it's not letting up. I had a CT in Feb and am stable, that's why I asked if others still had pain even when stable. I have an appt with my PCP on Wednesday & my infusion is next Friday.
Linda, I know for sure which I prefer, but there are times when you question that!!
Not glad that you have pain, but good to hear that it can last for a while. cheers, dee 0 -
Dee, have them check your thyroid numbers too.
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Hi Loves, they checked my thyroid last month & I'm on the low side of normal range. We'll see what my Doc says on Wednesday and what my blood counts are on Monday. Fingers crossed that I sleep tonight, getting tired of this (pun intended) Good night all, hope everyone has a peaceful painless sleep. cheers, dee
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did you see this amazing hope for MBC patients with liver and lung mets? http://www.telegraph.co.uk/news/health/news/121944...
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Jen, this is great news! Of course success in lab rats doesn't equate to success in humans just yet, but if this continues to show promise, wow the thought of a cure in metastatic disease is amazing! Thanks for sharing
Amy
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Just a quick update: My mother made it through her surgery in 90 minutes with no surprises. The sarcoma is gone and she is back on her feet walking stairs and doing pretty much everything she was doing before her surgery. She didn't even need a walker or a cane. She has two drains because the tumor was the size of a lemon but at least I have experience with those darn things. I'm so proud of my mom. She's really amazing.
I enjoyed my train trip so much from MSP to SEA I've booked a return trip home on the train. I didn't even have to show ID to board - unlike the circus and hoops we jump through at the airport. I look forward to watching the mountains through my window shortly after departure, however the sun sets about two hours into my trip so I will not see a lot until the next morning when I think we are east of Glacier National Park.
I have a lot more time on my hands these days since selling my business so if I have to make another trip to my parents, I think the train it is.
I hope Spring has made it to the tundra of the Midwest. It's pretty chilly here in the San Juan Islands, but it did get to 59 today. Unfortunately it's been in the mid to upper 70's at home.
Enjoy the weekend everyone.
Amy
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Hi all!
Jen, I did see this on the CMBC FB page. It's interesting, I hope it does better transitioning from mice to humans than other studies, I wouldn't want anyone to get their hopes up too high!
Amy, glad your mom is doing so good. I only ever took the train once & it was through Banff & Jasper from Vancouver to Calgary, it was wonderful. The train is such a nice way to travel but the last time I looked it was out of my budget. It supposed to warmer on Monday if you're staying til then.
Hope everyone is enjoying the weekend, it seems pretty quiet here, cheers, dee
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Hi Girls: I'm sorry I couldn't drop by for the last weeks. These days have been quite bad with long hospital days. It is hard to take car of my mum when I'm 600 kms far from her and have to stay with her and cope with work: I'm here and there, mad!. Now fortunately again at home after figthing infections.
Just wanted to drop by to say we are starting to take curcuma pills. I had read some clinical trials about promissing improvment of chemo with curcuma. I asked our doctor and she said curcuma could be a mets blocker or slower and potentially has antitumor propertis.
There are several researchs for curcumin with chemo to figth tumors (mainly for colon cancer I think), you can search the web (e g. http://www.ncbi.nlm.nih.gov/pubmed/21774804).
I don't what you to think Im promoting curcuma for any particular interest, just wanted to share with you my findings
Of course It won't cure cancer but will help to figth it
Before anything please ask your doctors to say if it safe for you
Ours say it is safe for us and could be benefitial so we started last friday
kisses and hughs from Spain
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HI Kiwi!! after long tiem I could read the post It is good to know you are doing great!!!
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Good morning, dear ones. Have been reading every day, and hope to write one-to-one soon. I had quite a shock last week, when I went to my preferred lab (NOT the cancer center lab my onc is now associated with)...my attendant was a new person and he surprised the heck out of me when he handed me a faxed printout stating my insurance company will not pay for my CA 27 test!! This is my blood test prior to my monthly Xgeva injection. If I had done the test at the hospital, my onc could have taken care of that...however, the delightful young person giving me my blood tests said he was not going to let me suffer any aggrevation or grief and he wrote back to them that he checked with my doctor and she said I must have the test. He was delightful, a great big diamond earring in BOTH ears, and eyelashes we could all envy (okay, it's beside the point whether he was wearing mascara or not. It worked!)
Yesterday, later on in the day, I noticed pain in the heel of my right foot. I had done nothing differently than ever before. I just went with it, kind of slightly limping when I walked, and even walking on my toes to keep off the heel, pretty sure all would be well after a good night's sleep. But, it's just as bad or maybe even worse this morning. Does anyone have any ideas on this? I don't know, should I get worried? I've never had any reaction from Arimidex to date, but I believe I may have read about some women's foot pain. Or, possibly something else? I will be at my primary care's office in a few days for Xgeva, and could certainly mention it then but I seriously hope it gets better today--it will be in mid-seventies and I want to go to campus and walk gloriously in the sun. I really, really want to.
Sending my love to each lovely flower here in our sisterly garden.
xo,
Valerie
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Valerie - I had bad foot pain while on Tamoxifen, mostly in front of the foot that made walking very painful for several weeks. Had x-rays which showed nothing and had a second set of x-rays about 2 weeks after as hairline fractures can take a while before they show up on imaging. Nothing appeared on x-ray the time around. Ended up having a cortisone shot which helped tremendously. If this pain lasts for more than 2-3 weeks, better have it checked.
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Valerie-Read: http://www.mayoclinic.org/diseases-conditions/plan...
It's a huge drag but at least it's not cancer. I've had it twice about 8 years apart. Feels you are stepping on a knife into your heel--esp first thing in the morning. Or after sitting for awhile and you start to walk--ouch! Then it will subside.
If you think that's what it might be, I can tell you a few things that helped me.
Ellen
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Hello to all,
Amy, glad to hear your Mom made it through surgery ok, she sounds like an amazing woman! I guess that's where you got it from.
Maria_Spain, glad you checked in with us, but so sorry your Mom has been fighting infections. Praying she is on the road to recovery.
Kendrasue, so good to hear from you, I hope the pain in your heel is feeling better. I have suffered the same thing before and it was related to the link Ellelou posted.
Terre, thinking of you, hope your painting is coming along nicely. Thanks for checking in and letting us know all is well.
Hugs to all, Annie
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This medical journal abstract really surprised me because it is counter-intuitive:
CONCLUSION: Evidence to support an analgesic role for bisphosphonates and
denosumab is weak. Bisphosphonates and denosumab appear to be beneficial in
preventing pain by delaying the onset of bone pain rather than by producing an
analgesic effect per se.
Palliat Med. 2016 Mar 22. pii: 0269216316639793. [Epub ahead of print]
Evidence on the analgesic role of bisphosphonates and denosumab in the treatment
of pain due to bone metastases: A systematic review within the European
Association for Palliative Care guidelines project.
Porta-Sales J(1), Garzón-Rodríguez C(2), Llorens-Torromé S(2), Brunelli C(3),
Pigni A(4), Caraceni A(3).
Author information:
(1)Palliative Care Service, Institut Català d'Oncologia, Bellvitge Biomedical
Research Institute (IDIBELL), WeCare Chair: End of Life Care, Universitat
Internacional de Catalunya, Barcelona, Spain jporta@iconcologia.net.
(2)Palliative Care Service, Institut Català d'Oncologia, Bellvitge Biomedical
Research Institute (IDIBELL), WeCare Chair: End of Life Care, Universitat
Internacional de Catalunya, Barcelona, Spain. (3)Palliative Care, Pain Therapy
and Rehabilitation Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan,
Italy European Palliative Care Research Center, Department of Cancer Research and
Molecular Biology, Norwegian University of Science and Technology, Trondheim,
Norway. (4)Palliative Care, Pain Therapy and Rehabilitation Unit, Fondazione
IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
BACKGROUND: Bisphosphonates and denosumab are well-established therapies to
reduce the frequency and severity of skeletal-related events in patients with
bone metastasis. However, the analgesic effect of these medications on bone pain
is uncertain.
AIM: To identify, critically appraise and synthesize existing evidence to answer
the following questions: 'In adult patients with metastatic bone pain, what is
the evidence that bisphosphonates and denosumab are effective and safe in
controlling pain?' and 'What is the most appropriate schedule of
bisphosphonate/denosumab administration to control bone pain?'. This review also
updates the 2002 Cochrane review 'Bisphosphonates for the relief of pain
secondary to bone metastases'.
DESIGN: Standard systematic review and narrative synthesis.
DATA SOURCES: MEDLINE, EMBASE and Cochrane CENTRAL databases were searched for
relevant articles published through 31 January 2014. A manual search was also
performed. Study inclusion criteria were: a) conducted in adult patients; b)
randomized controlled trial or meta-analisys; c) reported efficacy of
bisphosphonates or denosumab on pain and/or decribed side effects versus placebo
or other bisphosphonate; and d) English language.
RESULTS: The database search yielded 1585 studies, of which 43 (enrolling 8595
and 7590 patients, respectively, in bisphosphonate and denosumab trials) met the
inclusion criteria. Twenty-two (79%) of the 28 placebo-controlled trials found no
analgesic benefit for bisphosphonates. None of the denosumab studies assessed
direct pain relief.
CONCLUSION: Evidence to support an analgesic role for bisphosphonates and
denosumab is weak. Bisphosphonates and denosumab appear to be beneficial in
preventing pain by delaying the onset of bone pain rather than by producing an
analgesic effect per se.
© The Author(s) 2016.
PMID: 27006430 [PubMed - as supplied by publisher]
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That research really surprises me too, Stephanie -- but maybe not for the same reason it surprises you. It never crossed my mind that bisphosphonates and denosumab (Xgeva) were thought to have an analgesic effect. I thought the huge reduction in pain I've personally experienced since starting Xgeva was due to bone healing -- not an elimination of the pain sensation. Delaying the onset of pain is a bit more easy to grasp, but only in the context that these drugs are actually healing the bone or preventing it from breaking down further -- not merely delaying the onset of pain, which is the role of pain meds. Hmmmm... very strange research indeed, except that it's from a perspective of the benefit of these drugs in palliative care.
Amy, so glad your Mom sailed through surgery! Enjoy the spectacular train ride home.
Valerie, without reading the link, my first thought re. your heel pain is that it has nothing to do with mbc. It sounds very much like something many of us had had on occasion -- that stabbing pain in your heel that comes on without warning, and thankfully usually goes away fairly quickly, although it's most annoying until it does, and of course worrisome when we already have bone issues. Hope yours passes quickly!
Maria, good to see you and to know your Mother is doing better. I'm a big believer in curcumin for joint pain, and everyone I've recommended it to (like my hair stylist whose legs and hands hurt from his work) sing its praises. I've not only taken curcumin for several years, I've recently added an Irwin Naturals product aimed at inflammation, and it also contains Turmeric, which is what curcumin is from. Between the two of them, I am virtually pain-free until I over do things, and even then it's not my joints but my ribs and back that ache or burn. Oh, and while there's no research that totally proves its benefit for cancer prevention, my onc even said at one time that what research there is looks very promising.
Patty, are you home from the hospital??? Hope so!
MomATT, what did Dani's onc decide to add to her regimen? And are you going to Dana Farber or UPenn or somewhere for another opinion???
Big hugs to everyone else going into this new week!
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For those who are being treated at Dana Farber, can you recommend a MO there? I'm thinking about getting a second opinion there on my treatment plan. Also, any thoughts about going through their Online Specialty Practice which will provide the second opinion without me having to travel there vs. taking a trip to Boston to be seen in person?
Many thanks!
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Jen I will inbox you with all the information you need
Carol
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Jen, I see Erica Mayer. http://doctors.dana-farber.org/directory/profile.asp?pict_id=9519159
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So sorry I could not post here much, but missed you guys a lot. Dealing with the results of the scan, that are still uncertain and dealing with changes or addition to treatment, so it's been really tough to use the comp longer than I had to. We are deciding most probably on Herceptin/Perjeta and Ibr/Letrozole.
So far we are not going away, but def have one foot out one foot in.
Lynne so happy for your news with Hubby, tulips it is! Enjoy!
LindaE crazy that you have to deal with the uncertainty for so long. Let's hope they could fix it quick and it's not progression. They would not send you the copy of the report earlier, so you could read it and be prepared to spk with the doc? Some places do.
Aurora best of luck on your new tx.
Mary listen she was your mom, you are going through a rough time yourself, these issues don't just disappear. My Dear Mom was super Human, with what she went through in life!, She is now gone not 2 yrs yet, I still go to the phone wanting to call her, it's extremely hard. I have older sisters, we behave like teenagers when we start talking about her, emotional. It's ok I think, I prefer to feel, then not have these memories.
Linda top off, sounds marvelous!
LovesM it does make sense your reasoning, long time it is.
Patty what you wrote was so touchy. Hope to see you soon again.
Dee the way we know it, yes the pain is there and then it's gone. The lower back could be the sacrum area. Just have it checked k. Gorgeous flowers.
Kathryn your support is much appreciated, there are no choices. Sometimes I don't wanna bother a doctor or nurse, but I push myself, because it's someone else life that I am dealing with,and she put her trust in me. She is so so special, what I do is nothing.
Valerie, oh a little distraction, love it. And he did go the xtra mile, good for you. Feel better soon.
Cristina it's hard to advise you, please accept warm hugs!
For those here on Xgeva? How often are you taking it? TIA
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Mommal - very rigid here in terms of getting results other than with MO. But I managed to get an appt with my Ortho this morning at 7:30. I get Xgeva monthly. Best wishes to Dany with Herceptin/Perjeta.
Stephanie - thanks for the info about Xgeva. Weird but I for one have much less pain since I started Xgeva back in Oct. Will know this morning (I hope) if it's a spontaneous femur fracture caused by Xgeva. Will also ask that other femur be checked as these spontaneous fractures can be bi-lateral. Oh joy!
Patty - thinking of you and hoping you are home and better.
Amy - healing vibes to your mom.
Terre - happy to hear from you. Have fun painting your dining room.
Good day and hugs to all.
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Mom, I also get Xgeva every 4 weeks. I have also had a huge decrease in pain since starting Xgeva a year ago
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Miles is here! Born 4/18, weighing 6 lbs, 14 oz. Everyone is doing well and filled with great joy. Off to write sub plans, catch up on sleep and spend more time with my sweet baby.
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Miles! How fantastic. What a gorgeous baby. Congrats!
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Caryn, Congrats, what a bundle of joy! He's perfect! Enjoy every minute! Hugs
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Thank you Lynwood yeah i thought I am crazy, but I know that's what she used to be on. Someone is messing with my head.
LindaE- i am holding a rabbit foot for you!
and thx for the Xgeva input.0 -
He is beautiful Caryn. What a joy for you and your family.
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Caryn,
Congratulations. Miles is beautiful. What a sweet face! Enjoy your time with family. I look forward to seeing more pictures.
Lynne
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I get xgeva every 4 weeks too.
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Sharing in your joy, Caryn! Miles is such a beautiful baby. I'm envisioning so many happy times for the two of you. Such a blessing.
MomATT, I also get Xgeva monthly (every 28 days). However, I'm just on my 3rd dose, and I think there may be some research/justification for lowering a patient's dose as time goes on. You may want to look that up, or ask Dani's onc. Our shared experiences and input, while extremely informative, don't always give the full picture, and he may well have a sound reason for recommending the dose reduction.
Linda, good luck! Prayers for good news this morning! I'll be watching for an update.
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MomATT: I've been getting Xgeva every 6 weeks since my diagnosis. It works out to get it every other time I get H&P.
I'm far behind but will catch up and do want to share my experience with the metastatic conference. It was overall both uplifting and sobering. Uplifting because of so many treatments coming down the pike and the camaraderie of the women there. Sobering because I've been somewhat in denial and haven't mourned what I've lost. But no time for that today! My niece is visiting on a college tour trip.
Here's a photo from this past weekend. I took my Girl Scout troop camping. It was freezing at night but a good affirmation of all that I can still do.
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