Bone Mets Thread
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wendy. April fools day huh. My next pet is also April 1st. I told my mo I would not find ANY April's fool joke about my results funny. I am currently on the Falsodex and Ibrance combo and I have to say it's been fairly easy. My med problems have not been due to the tx as I had the same issues on the 1st tx as well. A month and now gonna be close to 2 months without tx sounds like a long time. What's an off study ?
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Patty - happy to hear you're out and about! Good for you on getting both treats LOL.
Dee - nice to see you, you look great!
Deanna - the CT scan of spine will be without contrast and the x-rays were requested because she wants to limit radiation, which I'm sort of confused about because a scan from neck to pelvis would have done the job with approx the same amount of radiation. But, we do have a baseline with x-rays so we'll see if there's any change. And because contrast is out of the question until allergy testing, I will have an abdominal ultrasound and I had one last year so we also have a baseline. I finally got in touch with the allergy dept to find out the request was lost in the system. Got things straightened out and have to arrange to change my anti-depressants for at least 4 weeks before testing can be done. This all could be done with if they had not lost the request, but won't make a difference in the whole scheme of things. Although I will be happy if I can have another contrast dye, especially when I read all the tests Wendy went through to get in a clinical trial. I have to ride it out until my regular MO comes back, changing docs in Quebec is no small task and next to impossible. Effects of budget costs here have a lot repercussions. We really have to advocate for ourselves and be well informed. Thank you BCO for the wealth of info.
Wendy - I really hope you qualify for the clinical trial this time. It certainly is an excellent way of getting adequate monitoring and meds that are not approved here.
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For those of you that wrote in response to last thread about my 85-year old mother who has mbc, thank you. To those of you who are struggling with terrible problems from mbc and the toll it takes, I hope you find the courage and hope to soldier onward. I have not caught up on all the posts yet but I will as soon as possible. I saw my mother yesterday at the rehabilitation facility and my heart was broken. My mother cannot do anything for herself except eat a soft food diet. She is 100 per cent dependent now on those around her. The rehab facility has done what can be done but my mother has not rallied. We are bringing her home on Monday. After three hours at the rehab hospital meeting with the staff and observing my mother, my brother and I agreed that we need substantial help to care for my mother. I cried and cried. We made the decision to place my mother into home hospice. I did some research through the Joint Commission website and found that we have one nationally accredited home hospice company in our small town. I am meeting with a representative from this company in the morning. It appears doubtful that my mother will recover from the rapid decline she experienced at the acute care hospital. However, the silver lining is that the home hospice group we picked is among 70 hospice organizations now allowed by Medicare to approve aggressive therapies while a patient is in hospice if the therapy is requested by the patient's physician. That means if my mother stages a comeback, which is unlikely but miracles do happen, she could have chemo while being in hospice care. Watching my mother and seeing what has happened to her body since February 4 when her lungs collapsed, I found it hard to visualize that she can cope with the progression of mbc for very long. I am not going to provide any graphic details.
My mother cannot walk. She has to be taken out of bed by a hoyer lift while sitting in a sling and deposited into a wheelchair. She has to be taken to doctor's appointments in a wheelchair van by an ambulance company. Her bedroom is not large enough for a medical bed, a hoyer lift, a wheelchair, and an oxygen machine. So, I made the decision to turn the living room into a place of comfort and love for my mother. I went out today and bought two new matching area rugs on sale to cover a large portion of the living room carpet. I am packing away most of the stuff cluttering up the living room, and then I am renting a carpet cleaner. After I dust everything and clean the carpet, I will put down the new rugs. My mother loves flowers, so we will have fresh flowers at least once a week. That means the living room will in essence serve as a hospital room, and we will have plenty of space to care for my mother. In addition, the hospice medical staff and volunteers will have a comfortable space in which to visit my mother. After I made the decision to place my mother in the living room, I talked with the case manager at the rehab hospital. She told me that when she worked as a hospice nurse that 90 percent of the families she served placed their loved one in the living room.
It has been a long day. I shopped for quite a few items we will need to take care of my mother. I am tired but help is on the way.
I will catch up with the posts as soon as possible. I have much to do as the house is in a state of disastrous disorder due to the long recovery period from my breast cancer surgery. The incisions are still healing so I will have to be careful and avoid too much heavy lifting.
May you all find peace and joy in your hearts this weekend.
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DF,
If you are still in need of some items, Soroptimist is a nation-wide organization that offers equipment such as wheelchairs, walkers, beds, canes, shower chairs among other things, for free. They are a wonderful place for compassionate assistance besides the hard goods. Hopefully you can find one nearby for anything you are still in need of.
You are a good daughter -
Hugs
Amy
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Days and pages behind...hoping to catch up tomorrow. Waving hello and sending hugs from Levin - actually home for the weekend! It feels like a prison work/release schedule. Back to Auckland Monday, but get to come home Wed night and have a huge long weekend (we get Good Friday and Easter Monday as holidays and I"m taking Thursday off).
Hugs and love to all.....
Terre
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DF, You have been working very hard, and this continues to be a difficult time for you and your family. Know in your heart that you are doing everything you possibly can to make your mom comfortable and to help her with everything she needs. You are a caring, loving daughter. I pray that you will find some peace through all of this. Although this is a hard period, you will someday look back and realize how precious this time with your mom has been. I am glad you have brought in hospice to help. It will make a world of difference, not only for your mother but for you and your brother, too. They can help in so many ways. Don't be afraid to ask for whatever you need.
Terre, My goodness you are a busy woman. You should enjoy that nice long weekend coming up. Do you know hen you and your DH will be enjoying your prize, the stay in the luxurious hotel?
Wendy, I am keeping fingers crossed that you will get into that clinical trial. At least your onc has a back up plan, just in case.
Dee, I love the picture. It is nice to know that you and your DH got out and had some fun. Sometimes we just have to break away in spite of all the issues in our lives. Having a break is good for the soul and sometimes helps to re-energize us. It is weird that this is the only place that you are having problems with your computer/tablet
Deanna, it is always good to hear from you. We missed your wisdom and support here.
Patty, it is so nice that you got out for a bit. I hope those hospitalization days are behind you.
Amy, ONJ and rheumatologist? I have never made that connection, but it makes sense that a rheumatologist could get involved the the treatment of the condition. Let's hope you never need that treatment and that you find a dentist who helps you avoid the condition.
My tulips have poked through the soil, but we are supposed to get some snow for the first day of spring. I am sure it won't last long. I wish I could say that I will enjoy it, but I am really looking forward to the warm weather and playing in the garden.
Hi to everyone I haven't mentioned by name. Enjoy the weekend.
Lynne
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Dee- such a great picture-thanks for sharing!
DF- you are such an amazing daughter. The fresh flowers is such a lovely touch.
Wendy-I hope you end up in the clinical trial!
Patty-so happy you're getting out and doing things. Hopefully you'll feel better and better every day.
Lynn-Tulips are my all time favorite-I do miss my garden!
Deanna- you are always a great source of knowledge and information-glad to hear from you again.
Wishing everyone a great weekend. I'm usually busy, busy, busy but my DH and I actually have no plans this weekend-to catch up with our own lives!!!! So happy to be restful!
Great weekend one and all,
Babs
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Hello to everyone....I am days, weeks, months behind... and this thread moves so fast anyway. I think I missed a TON. I have been working too much - no excuse - and hope to be better staying engaged going forward as in spite of the topics I really enjoy hearing from everyone and "seeing" your faces.
Deanna - wonderful new picture (I'm sure it's not new at this point... new to me..) Wondering what has been going on with you - I will have to go back and catch up. XGeva: I have been getting Xgeva shots for three years now... always in the arm. I never have any side effects ( that I know of) but it's definitely painful going in. I make them warm it up, and go slowly.... my oncologist has told me over and over that that is the one treatment I CANNOT skip as she feels it is the most beneficial. ( I skip my Herceptin treaments once in a while... they start to build up in my system and really cause aches/pain/fatigue) I am hoping that whatever has been going on, you are on the right track now. As everyone else has said, you are always such a wealth of knowledge, kindness and love. I would love an updated address list. Wondering who we lost in the last few months? I really hate being out of the loop.
KiwiCat - love the pictures of your new home! LOVE! So envious. It was spring here in Denver for a long time.... we have daffodils and tulips in the yard, and then yesterday snowed about 8 inches...I am afraid to go see what it's done to them. We are considering a trip to New Zealand next Christmas with all four kids. Sort of a bucket list trip for me, and easiest to do at Xmas when they are all off of school, even though expensive. I will have to keep you posted as I'd love to somehow meet you!
Question for everyone... has anyone found post chemo/etc rehabilitation, something.... that continues to help with healing/maybe even straightening of the spine? OR am I crazy? I have become as active as possible again - running, skiing, hiking, etc.... but my lower back hurts a lot. I had a recent bone scan that showed the scoliolis from my extensive bone mets is severe ( my back looks like a C) and my lower back still has compressions in it. The hospital that I go to has a Spine Center and I am considering going there for advice....I am even wondering if there is some sort of brace they can put me in that will graduatlly straighten it out. Or, yoga maybe? If anyone has any advice or thoughts, I would appreciate it. My oncologist encourages me to do all of the activities I do and reassures me that my bones are strong, but I literally lost an inch in this processs, and would like to stretch/straighten/stabilize even more if possible.
Hugs to everyone else.... I will try to keep up.....
XOXO
Andi
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Babs, Those nice relaxing weekends can be fantastic. I hope you and your DH enjoy every minute of it.
My DH and I are spending the weekend at Brigham and Women's hospital again, so our weekend of togetherness is nice and quiet, too. We have been here for a few days. DH had chills, fever, heart rate of 143, bp of 78/something on Thursday. He has another infection, is on antibiotics again, got another new and bigger gallbladder drain, and is feeling really good now. We hope to be home in a couple days. Surgeons are supposed to come discuss when it will be safe to take out that darn gallbladder. We are doing really well and remain upbeat, mainly because he turned around so quickly this time. Oh, and not that it means much to you, but his creatinine level continues to go down and is lower than it has been since surgery. No one excepted his kidney function to rebound so much after kidney shut down during internal bleeding episode in December. Creatinine is still going down, too. Woohoo! It is amazing what the human body can do. Our bodies can do more than we expect. Remember that.
Lynne
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Lynne- I can't believe your DH is back in the hospital again! I'm so sorry but happy that you are upbeat about it! and that all his levels are going in the right direction!!!! Hope he gets better real fast!!!
Babs
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DF - I'm simply in awe reading your post. Your Mom will be in good hands. You are an amazing and loving daughter. Do take care of yourself as well.
Terre - you certainly deserve that break!
Andie - welcome back and good to hear from you. Sorry, no advice here.
Lynne - bugger on another infection. Amazing how our bodies heal, woohoo indeed.
Aurora - how are you? thinking of you this morning.
Good week-end to all, whether relaxing or busy busy!
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Hi, all. My post about pH was to remind everyone that everything can react with what treatment you are on and we really need to let our treatment team know everything we take. Even what seems to Be innocuous and all natural can hurt us. Grapefruit is off my diet (I love grapefruit) because it increases the concentration of my Xeloda and would be like overdosing if I ate grapefruit even in small amount.
Spent yesterday afternoon in the cancer centers ER. My first time. I was amazed. I called my ONC to report some debilitating side effects of Xeloda - 4 days of intractable nausea most likely caused by terrible runny nose (rhinorrhea) fatigue, all the usual. I was told to go to the Direct Referral Unit at the hospital.
When we arrived I was told to go directly into the unit. they were waiting for me. Escorted to a private treatment room. The nurses and the DRU doc knew my history, why I was there, and already had orders for labs. I did not have to go thru registration or triage! In a matter of 3.5 hours I had blood work, MRI of head, IV fluids, IV meds. Felt 100% better. Discharged with an appointment to see ONC in 1 week, RX for meds sent electronically to my pharmacy. And, instructions that maybe a massage would be good because I was so tense and had cramping from low calcium and potassium. That evening the doc from DRU called to check on me and so did my ONC!
I was so impressed. Everyone deserves care like this.
BTW, MRI of head showed no change just innumerable calvarium mets. Bone mets of skull. ONC was worried that on of the mets pressed through to lining of skull and my constantly draining nose was actually cerebral spinal fluid! Phew! Dodged a big bullet.
Having hot stone massage this afternoon.
Hope everyone has a lovely weekend.
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MSparki-glad you dodged that bullet!!!!!
Babs
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rnsparki, What a wonderful experience under such terrible circumstances! I am sure it helped reduce some of the stress, not to mention thevfact that you didn't have to sit in the waiting room for hours.You are right, we all deserve care like that. I am glad that there was no bad news through all of that. Relax and recover.
Lynne
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Andi ~ Wonderful to see you again! I've often wondered how you were doing and hoped you were just too busy with life and your beautiful family to be here, and I'm so glad to know you have been! I am also very interested in the question you asked. It sounds like we're experiencing the same back issues, and I know at one time my ULCA onc had mentioned PT for it, but until getting on Xgeva, my back hadn't felt strong enough. So I will ask her again about it, and please let us know anything you find out beyond what others can add here, although I don't recall anyone mentioning actually doing PT to improve curvature and the shoulder rounding my hubby is always pointing out when I hurt the most.
DF, I'm so sorry about your Mom's decline. Sadly, I've seen it happen several times to other women her age, sometimes after a fall and hip fracture, or even a mild stroke -- things a younger person would recover from, but for some reason those in their 80s sometimes cannot -- although, as you said, miracles certainly do happen -- as it did w/my 94-year old friend -- so we will certainly keep praying for one, and perhaps getting her home and in hospice care will make her stronger. I certainly hope so. It sounds like you are doing everything in your power to make her comfortable in your home, which is wonderful. Since you are really going into much more of a caregiver phase with her, you might also find advice related to that in the section here for caregivers. Don't know if you've gone there yet, but I would hope they could give you some firsthand support with those sorts of day-to-day struggles and decisions more than we can here.
Lynne, you and your hubby are so fortunate to be near such a great hospital! I'm sorry he's back there, but glad things have turned around quickly this time, and WooHoo to the much improved creatinine levels! Your grace and energy in handling his on-going health episodes never ceases to amaze me. I hope you will find some "you" time to recharge soon. And yes, great reminder about the extraordinary healing capacity of our miraculous bodies!
Question... Does anyone do Tai Chi? A friend invited me to a session today. I'm passing b'cuz my bones are still a bit achy from the Xgeva I had few days ago, but just wondering if anyone has tried it and if it's hard/easy with back issues?
Have a wonderful weekend, ladies. I have a hair appt -- going lighter for the summer; our potluck group meets tonight; and tomorrow we're doing a drive with a group of friends to the Anza Borrego State Park to see the wildflowers that are reportedly so extraordinary this year, thanks to more rain than usual in the desert. Hopefully, I'll get some photos to share.
Big hugs and healing thoughts going out to everyone! Deanna
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rnsparki ~ Missed your post as I started mine then got sidetracked w/a phone call. Wow, what impressive care you got! It must have been so comforting not to have to wait hours in a germ-filled ER, and to have your records already pulled up, etc. I'm so impressed! What hospital did you go to? It seems like many others could benefit from that type of protocol for cancer patients!
And interesting about the grapefruit. That's the same for Ibrance, and others have warned that you have to be careful with many fruit flavored things, like drinks, that may not be grapefruit, but actually do contain enough grapefruit juice or oil to cause a problem.
Enjoy your massage, and hope you continue to recover and feel better! (((Hugs))) Deanna
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Hi All,
Lynne, Sorry to hear yet another hospital trip but good to hear that your dh is turing around quickly. You're right about our bodies. Truly amazing what they endure.
Andi and Deanna, I started QiGong which is very similar to Tai Chi. Annie told me all about it and I ordered a DVD which is really great. There are some postures/poses I can't do but I do most of them and it helps me to breathe deeper and stretch some muscles. Annie is a pro at at and I'm sure she can tell you more. I do wear a brace which helps with my curvature and kyphosis from getting worse. You can get that from a PT or orthopedic person. Deanna told me about a brace she got at Walgreens, and again it helps with my lower back.
So thanks to Annie and Deanna for setting me on a better path.
Msparki, No change in mets is very good news and a hot stone massage should be just the treatment you need right now. i love to see you post as you know so much.
Babs, enjoy your restful weekend and hi to everyone I missed!
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msparki. Great news on the MRI. Great care you got, ism jealous. I have had to go thru the er everytime. Always a 4-8 hour sta in er before admitting me to a room. Hospital blamed it on all the paperwork and new procedures put in place with obamacare.
Deanna. Enjoy your weekend. Sounds fun. So glad to see your posts. You are such an important part of our thread.
Lynne. Sorry to hear y'all are back in the hospital again. Bummer. Glad things are looking up.
Andi. No advice but glad too see you
Lindae hugs
Terre. Hang in there. Wed is coming
Hugs to all I missed. It's just so hard to remember to address each person. Not trying to leave anyone out. Our thread is moving so quickly now it's nearly impossible to respond to all. I hope no one gets their feelings hurt. I never do when its me.
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today dss start spring break. The weather has been great but today and tomorrow a cold front is here. The high for today and tomorrow is like 50. Brr def not spring break weather. Now we ot to find something to do inside somewhere hmmm.0
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Hello everyone I've been reading all your posts and as I read I pause to pray for and/or thank God for each one of you. I am still getting my Abraxane chemo infusion although my onco is thinking of switching me to Faslodex due to my CA26-29 doubled during the last 3 months but she said the raise could be due to the break in treatment in October and November due to the hip replacement. I'm feeling miserable due to a cold that was brought to me thanks to my 4 year old grandson pre-K germs. Like someone has said Stage IV people should get a pass on other things such as lousy colds! Hope everyone is having a pain free se free weekend.
Aurora
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hi aurora. Hope you feel better soon. I agree a pass dhould be given.
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So, everybody, I have met with home hospice and they will make all the arrangements for equipment and many supplies for my mother's care. I will probably join the caregivers thread at some point, as one of you suggested. The equipment will arrive on Monday morning and my mother will be carried home that day in an ambulance. I am still decluttering the living room which will serve as my mother's place of care and comfort. The high priest at our church is my mother's doctor, and we have asked him to serve as the primary physician on the interdisciplinary hospice team responsible for my Mom's care. He called me the night before last and told me that the church will provide help to our family during this time. The next day I purchased two new rugs to place over the living room carpet as the other rugs were old and pose a tripping hazard, and then called one of our members and asked if he could pick up the rugs at the store. When I got home, the rugs were already in the house.
You are such a wonderful group of people. I will keep you in my heart as examples of how we should all treat each other.
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Hi all. Not very springy this first day of spring at my house, but it is a sunny, bluebird day. This snow picture is looking up my street. No flowers in my garden for a while, but I just had to buy some daffodils at the grocery store to bring me a little spring!
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Patty ahh it's so nice to see you around. Enjoy dss
Lynne you were just getting your strength back, but it's great to know your Dh is improving. Best of luck.
LindaE waiting with you for your results.
Deanna hope your pain has gone away. Regarding grapefruits, yes, for Ibrance and also for blood thinners, my hubby is on them and used to have everyday grapefruit, not such a good idea. You know doctors don't tell us about that, we find out through the grapevine.Deanna have fun!
It's so funny that just yesterday, Dani started Yoga, and was talking about getting massages. She is so tight in many areas, the muscles are like chunks. I was afraid of people touching all those areas, given the fact that she had (or has) tumor all over her bones, front, back, waiting to speak with Onco tomorrow if they agree that she could have the massages.
Dee thanks for sharing such a nice picture. Enjoy!
Babs "quiet" is the new having fun! I love the normal boring day!!!
Msparki wow, it sounds like a dream the care you had. We all would like to experience it. I was with my aunt a couple of months at the ER, 2 1/2 days IN the ER. She was just one among too many others also waiting. NOT acceptable. My daughter has the same type of lesions, in the calvarium also, it's been pushing into the dura, so always some worry. She did have Gamma to the area, it's gotten better, but it's there! So glad they checked it out, it means your Onco is on top of things.
DF you are in the right path. You will see when you will take her home and hospice will visit, it will calm you down. It's more at your pace. And you could work out when it's best for them to come, it does not have to be the other way around.
Wendy wow patience!! It's getting real close, hope the days go by fast for you.
Aurora thinking of you. You certainly deserve a break!
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Not springlike, but beautiful, none the less!
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DF. What a wonderful group from your church. I'm so happy you have them physically there to support you and us emotionally!
BHSMiller. Loved the contrast of snow and daffodils!!! Me I had to have tulips this weekend to make me think of Spring!
Babs
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Momallthetime, I get massages from woman who is a certified oncology masseuse. It feels really good and it's not a hard massage but very relaxing. My muscles really hurt from taxotere. I feel very stiff. The massage helps. Hope your daughter likes it.
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Hey txmom so nice to hear from you, it's been awhile!! How are you doing? And thx for the heads up!
I came across this link re-teas, it may help someone here.
http://www.foxnews.com/health/2016/03/19/best-teas...
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bjs. I only thought it was cold here. Brr. No more complaining from me about ourcool temps
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Hi, I am feeling good. I am now on H&P and tamoxifen. So far so good. I have my first scans on this combo, in April. This thread moves so fast I can't keep up. I just pop in now and then. Hope everyone is feeling well and pain free. XO
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