Bone Mets Thread

dlb823

Speaking of outliers, I heard on FB today about someone who has been metastatic for 30 years! Don't have any details about her situation, but it's a true story and should help us all reset our expectations. If I find out more, Ii'll be sure to share.

PattyPeppermint

good night all

Kjones13

night patty

jobur

Xavo,

I think lots of people start on Zometa. I was only given Xgeva after asking about it. Same with Ibrance. I was on Faslodex and brought up the subject of Ibrance as soon as I read about it this summer. My mo has been accommodating, but I wonder if I would have gotten either tx had I not brought the subject up.

A lot of insurance companies refuse PET scan requests, but then it seems different mo's have different opinions on which type of scans are needed.

Bottom line is, if you don't feel you are getting adequate care, you must be your own advocate and bring these issues up with your mo. If they are not open to at least discussing the pros and cons of different txs and monitoring strategies, maybe it's time for a different onc. I sometimes feel I may be getting more monitoring than I need (monthly mo visit and blood work including 2 TMs, scans every 3 months), but for this first year and a half I feel better about too much than I would not enough. I am not and have never been NED.

Best wishes!

jobur

PattyP It's so good to have you back on the boards! Big hugs to your little self. Sleep tight!

You too Kjones!

GG27

My family Dr has a personal friend who is 20 years MBC.

ChelleG

good night everyone, 30 years sounds great! I'll sleep good knowing that

KiwiCatMom

Ok..in the contest of most "cheap" patient - I will be 3 years out from dx in January. I have had 3 bone scans, 2 CT scans, was seeing my MO every 4 months, now we're at 6 months. I see my orthopedic surgeon once a year (but can call if I have problems). I get tumour markers done every four to six months. I've requested another bone scan because I have some new pains in my hip, rib, and spine; still waiting for it. I have no clue what it would take to get a PET scan here. Probably have to go to Auckland and pay for it myself. That said, my care is free, and most of my meds are $5 for 3 months. So I can't complain too much. And my MO does listen to me and if I ask for a scan, he gets me one. It just takes a couple of months from when you get on the list unless there's a compelling reason to speed things up. My MO feels that since I'm NED, I don't need frequent scans unless something changes. The only problem is that we don't know if my tumour markers are accurate since I had no baseline ones done before I started Femara.

Oh well...30 years does sound great. Even twenty!

Good to see Patty and kjones back. Dune - hope you're not wheezing today.

I just posted something in Tips for Fighting the Dark Clouds thread about a friend of mine with mesothelioma who is NED. Yup..you read that right. One year out and NED. So, you might want to cruise over to that thread if you're interested.

Hugs to all,

Terre

50sgirl

Good morning, everyone. I am a cheap patient, too. I was seeing onc monthly but am now down to every three months. I take Arimidex and have monthly blood tests andinfusions of Zometa (but frequency of Zometa will be cut back eventually). My onc does tumor markers every three months. I have never had a PET scan. I also see the breast surgeon every three months. I am not sure how long that will go on since I haven't had surgery and none is planned. When I was diagnosed, I was in a great deal of pain, was very anemic, and felt terrible. Now I feel great and my primary tumor continues to shrink, so I guess the cheap treatment is working for me, at least for now.

Well, I am well-hydrated and have taken Tylenol and am off to get my blood tests and Zometa. Have a good day.

Lynne

Anonymous

Good Morning!

I am getting my port today and tomorrow is PT/CT scan. I have no veins not even for simple blood work, so this is the best option for me. GOOD news! IBRANCE arrives today!! I will be taking it tonight right after dinner. Is that what most of you do? I will go ask in the Ibrance thread as well.

Dana Farber oncologist wrote back to me regarding Xgena vs Zometa and I wanted to share with you what I was told.

"Regarding the choice of Xgena or Zometa for you, either would be fine. Xgena is a little better at preserving bone density and preventing fracture in patients with osteoporosis compared to zometa. However, in patients with cancer, the current data indicates that Xgena (denosumab) is equivalent to zometa. Xgena is more expensive so we prefer to use zometa. However if your insurance covers Xgena that would be fine. Zometa does take longer to get as it is an IV while Xgena is a quick shot."

Myra1211

Thank you all for the lovely compliments about my Mallory. We will be I siting up there in 2 weeks. Myra

annieoakley

LovesMaltese, best of luck with your port insertion and sending positive vibes for tomorrow's CT scan. 

Myra, good to hear you'll be seeing your beautiful granddaughter again soon. I hope we get more pictures.

Deanna, wow 30 years metastatic,  I would love to know more about that! Makes me feel so hopeful. 

Dee, you're story is encouraging too, 20 years brings me to 70 and that is by no means old but I would feel so blessed to be able to reach that age. 

Hugs to all you beautiful ladies. Have a great day, Annie

LindaE54

Good morning all,

Myra - Mallory is absolutely beautiful and so happy you will see her soon.

Ditto on what has been said about Zometa/Xgeva/Areda. My Onc said one or the other is good. One thing I will add is if calcium levels are through the roof, requiring a medical emergency, Aredia would be used because of its speed to lower the calcium. I am switching to Xgeva tomorrow (only because I asked and my insurance approves it), but since I have a tendency to have high calcium from mets, Aredia would be used should calcium levels misbehave badly.

Wishing us all a beautiful day and sending hugs all around.

Xavo

Thanks folks for comparing notes on how our cares are carried out. Thanks jobur for the advice! As for our "cheap patient" contest, I concede. In case no one would claim being even "cheaper", it seemed that Lynne got the third place, Terre is in the second, and the gold medal goes to Caryn. Apparently, it looks the "cheaper", the better!

Have a nice Tuesday my ladies!

GG27

I feel so bad that I'm not a cheap patient. Every time I have to go for blood work, the sheer number of things the RN's have to take out just for these tests makes me feel bad. Plus the Gov't pays my ferry fare everytime I need to go off island for a medical need. CT's, bone scans, radiation, infusions, MO's, RO's.... ugh!

Until BC though, I had one Dr's appt per year, no tests, nothing.... but I'm sure making up for it now. But I'm hoping it will slow down a bit now.

If I could get 20 years MBC, I too would be a happy camper. That would put me in my mid seventies, while not old, certainly better than mid fifties.

I have no choice here to use anything other than Aredia, it's what the provincial health care covers. If I wanted anything else, I would have to pay. However if it wasn't working or I had a reaction to it, my Onc could write & get something else covered for me. It goes on a case by case basis. I have no problem with my coverage here. My anastrozole is dosed from the hospital so I don't have a pharmacy charge for it.

Lovesmaltese, I have a love/hate thing with my port. I love that I can have everything done through it, but mine sticks out quite a bit so I have to be a bit careful on what I wear on top.

Another beautiful day here, last one til the rains come, so I'm heading back out to the garden for one more day. Take care everyone, Cheers, Dee

dlb823

Well, I know I'm not a cheap patient with Ibrance costing what it does, not to mention the hip & femur surgery. But I like to think of it as a bionic woman analogy.

But Xavo, your rankings reminded me a little story my local onc told me the last time I saw him. A 90-something year old patient w/multiple myeloma who had not been doing well the last time he saw her 6+ months earlier had been in the same morning I was there. Having not seen her for several months, and because she was doing so poorly the last time he saw her, he hadn't expected to see her again. But she had shown up that morning all chipper and looking great, after driving down a very long, steep and winding mountain road by herself to see him. Since she hadn't been in for 6+ months, and was doing so well that she had in that time ditched the caregiver-driver-friend who used to bring her, his wry conclusion -- said with just the right amount of irony was, that seeing your oncologist too often actually may not be good for your health.

Just some food for thought...

Lindalou

LindaE, Good luck with Xgeva tomorrow. I had mine yesterday and I feel a LOT better than I did on Zometa already. Keeping fingers crossed. Just a bit upset stomach and migraine but I always get migraines. So far bone ache is tolerable. Nothing to the shot...just a little burn. I'm getting Faslodex next week to see if spacing the 2 drugs out instead of together helps with SE's. I'll let you all know. Heading out for a walk. Going for 2 miles today if my back behaves.

Xavo

Cute story, Deanna! Also so comforting!

cjanet

Love that story Deanna! Feeling a little down today. Woke up w a burning sensation in my back. It's gone away, but just having some conflict w my 7 year old, DH spoils her, I try to discipline and it's just not working out well. She's always screaming, misbehaving and yet she still gets almost whatever she wants. I know daddies spoil their daughters so should I let it go? Not sure.

dlb823

Cristina, sorry you're feeling down. It's hard to comment about your daughter based on the little you've told us, but no one likes a screaming, misbehaving 7 year old. (It's bad enough at 2.) What does your hubby do to contribute to her behavior? Letting her get away with screaming, misbehaving and manipulating you both to get her way isn't spoiling her, it's being a lazy parent (IMO) and doing her real harm in the long run. You really need to get on the same page w/yhour hubby re. discipline. Besides, you don't need the stress it's causing you. Have you talked to him about it?

txmom

Cristina one of the best parenting books I ever read is called Love and Logic by Foster Cline and Jim Fay. They also have a FB page. I was an adolescent therapist for many years. Therapists have a saying....little child, little problem, big child, big problem. Take care of the problems while your child is little. Hope everyone has a great day today!

exbrnxgrl

Deanna,

Love the story, as I'm a less is more person when it comes to medical care. Not that I'd hesitate if I needed it, but given the current state of my bc, I'm good with the minimalist approach. I did rack up the big bucks early on. I needed 3 days in hospital after my bmx and one step recon. This was closely followed by an ER visit for a complete pneumothorax, a one week hospitalization, three chest tube insertions and a month of a portable chest tube at home with every other day nurses visits. So I was costly up front 😉

Caryn

dunesleeper

Hi everyone. I stopped panicking about the lungs and the wheezing. I had a regular doctor appointment and showed him my inhaler from years ago. He said he thought I could use that if I felt the need and I felt relieved.

Today has been a good day because I have not been in pain. I am sleepy though. Oncologist upped the Oxycontin to 60mg. Oh well.

LindaE54

Thank you Lindalou. I will let you know how it goes.

Dee - wow I'm surprised that even travelling costs are reimbursed in BC. I will add that the Canadian gov is cheap with regards to some meds such as Ibrance or Faslodex (in some provinces for the latter) not available here. Some targeted meds for HER2 were approved in Canada years later than in the US or elsewhere. Other meds for other cancers are still not approved in Canada. I guess I'm not a cheap patient because MO, RO, rads, scans/exams, surgery are all free. But I pay my co-insurance share for all meds, including Aredia and Xgeva here in Quebec.

KiwiCatMom

Dee - no need to feel guilty - that's what the funding is there for! I am sure my day(s) will come when I'll be more expensive. I did have the rod in the femur thing too...I'm sure that wasn't cheap, but it was free for me. And with similar health care system to Canada and a shortage of oncologists, the frequent care is given to those who need it, and I don't at this point in time.

Good luck with the port, Loves.

Dune - so glad you're doing better!

Love the stories!

Best get my rear in gear...lots of deadlines today. Ick.

Hugs to all,

Terre

cjanet

Dune how often do you take the Oxy? I'm on Oxy 40 mg three times per day plus Subsys (400 mcg) as needed for pain, usually 2-3 times per day. Makes me sleepy for sure, hard when I'm working. I think I'm on my 3rd or 4th cup of coffee.

jobur

Dee,

I feel very guilty about the cost of my medical care too. Like you, I barely went to the doctor in the 30+ years pre mbc. It makes me almost physically ill when I get the EOBs (explanation of benefits) from my insurance company showing how much everything costs. Never mind that I pay my max out of pocket every year and a hefty premium every month. I sometimes think it's really not worth that kind of $$ just to keep me alive. But then I think about all the CEOs and CFOs and CIOs and just plain old VPs and how much they are paid. I figure they probably aren't worth it either and it makes me feel a little better.

So happy you have that one more beautiful day to spend in the garden. I'm pretty sure those days are done here for this year. Hope you enjoyed every minute!

LindaE54

And let's not forget we paid and continue to pay high income taxes in Canada (Quebec is one of the highest income tax rates in the world plus a yearly "health premium"). It free but not free.

Bluefrog76

I have a big day of scans tomorrow, the first since chemo:skull/Brain MRI, mammogram, breast ultrasounds, full body bone scan, and echocardiogram Friday. I feel so normal most days that it's been easy to forget that I have stage IV cancer. I'm nervous, especially about the 6 cm. skull lesion that was found last time. I decided to have the scans and not get the results until after vacation next week. I think I will cry for days if anything has progressed. And I figure I will be just as happy to hear good news after vacation.

50sgirl

I had my Zometa infusion, and so far I feel great. While I was having blood drawn for blood tests, I asked for the results of last month's TM testing. I hadn't called to get them after last month's visit due to dh's health issue. Anyway, in June my CA 27.29 was 947 yes 947. Last month it was down to....drumroll please...167!!!. I realize that this is still a far cry from 38, but I am VERY happy. During last month's visit, my onc said he would be shocked if the TMs weren't down significantly, and he was right.

Bluefrog, Good luck with your scans tomorrow. Are you having all of them except the echo tomorrow? That is a heck of a lot of scans in one day. You will be exhausted. Take it easy. I understand why you don't want to have the results until after vacation. Just try not to worry about them all next week. Try to relax and have fun. I know what you mean abou feeling normal. I am the same way. Enjoy your vacation. When you return, let us know about the realty of the scans.

Dee and Jobur, Don't ever feel guilty about the cost of your care. We are all worth the price of treatment. I could go on a tirade complaining about the ridiculously high cost of healthcare, but I know I would be preaching to the choir. It is outrageous that treatments, tests, and medications are so expensive. Unfortunately, we have no choice. We need to be treated, and we deserve the best possible care for our situations.

Deanna, I love your story. It made me smile.

I will catch up with everyone else later. Have a good evening.

Lynne