Bone Mets Thread
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Aurora, I am sorry that your tx has stopped working, but I sometimes lurk on the Ibrance threads, and I have read that many people are seeing good results with Faslodex and Ibrance. As you can see, Deanna is a good example. I hope it's exactly what you need.
Amy, I can only imagine how good it feels to have relief from that pain. A friend of mine had both knees replaced last year. I realize that knees are not hips, but he is very happy with the results of his surgery. He wishes he'd done it earlier instead of suffering with so much pain. I hope that you won't need a hip replacement until many years from now, but if you do, it will probably be an improvement. In the meantime, enjoy yourself. Ditching that handicapped tag would be nice, but don't rush things. It would be great if you can go back to horseback riding. I am thinking of trying to ski again next winter. I always enjoyed the freedom of coming down those hills. My DH will probably make me check with onc first, but one of his warnings was "if it hurts, don't do it. " Skiing doesn't usually hurt unless I fall. Haha. Actually, my knees are a bit more sensitive these days, so I will try the bunny slope first. Oh my goodness, spring is just beginning, and I am already dreaming about winter. What is wrong with me? I am looking forward to enjoying the spring and summer.
Lynn
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Amy - good to hear the shot went well and you feel normal again.
Aurora - sorry about TMs. Are you changing tx only based on TMs or will a scan confirm progression? All the best with Fas + Ibrance!
Dee - excellent link.
Babs - congrats on TMs!
Deanna - I noticed I have less pain since I started Xgeva in Oct or Dec. Much less pain in fact than with Aredia. I do have some pain in mets after Xgeva for a few days and I like to think the med is doing its job.
I went for a complete abdominal US this morning and several x-rays, and going back to the hospital later this afternoon for a CT scan of cervical and thoracic spine. But this is Canada, results on 2 May when I see my MO. However, I alerted my nurse navigator and she will try to give me results earlier providing she gets authorization from MO. So much bureaucracy here. Some of you may remember the screw up of a radiologist last year who completely misread my x-rays and subsequently learned that he had made other mistakes on other patients. He's now limited to reading x-rays only, he was supposed to leave but he's still there. So I wrote on the doc's request that I specifically do not want him to read my x-rays with my signature. Techs were a little surprised by my request but understood why. Advocating for myself here and felt good. MO wouldn't ask herself, medical mafia, they don't want to ruffle feathers. I'm OK with ruffling feathers when it concerns my health!
On to reading the other links you gals posted.
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Hi Ladies! Just wanted to say thanks for sharing my blog post about what we with MOs knew... I have not been on this site in a bit, I should update my profile...my MBC upddate
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Amy, we were posting at the same time above... About the hip replacement... while it is major surgery, as long as you have a fabulous ortho surgeon, it's nothing to fear. I was so depressed when I was told that's what I needed one due to pathological fractures, but recovery was actually wasn't all that bad, and probably faster than what my hubby went through w/a knee replacement. Of course the first two or three weeks are a bit rough, and you will need some PT, which wasn't any different than going to a gym for me. But I and a couple of friends -- one who had a bad hiking accident that crushed her hip, and a guy I know w/typical hip degeneration -- were all up and running around within 3 months, and I was cleared by six months to do absolutely any activity, including skiing -- which, by the way, Lynne, my UCLA onc (but not my ortho surgeon) has discouraged due to the risk of a fracture, even though I've taught skiing in the past and would stick to the easy stuff. Plus, I honestly feel that the surgery gave me a jump start on fighting my mbc because my ortho surgeon removed so much of what he said looked diseased in the process. I know it's hard to wrap your head around, but it turned out to be truly a blessing for me.
Editing to add since I just saw your post, EnglishMajor... That was a fabulous blog!!! Thanks to Dee for sharing it. I thought something about the blogger sounded familiar, but couldn't place it or you! Thanks for cluing us in!
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Great news about lower TMs Chelle and Babs! Good to hear from you Chelle and glad you were away for all good news! Live your dream!
Aurora, sorry to hear about your TM increases. Here's to great success on your new tx plan.
Valerie, condolences on the loss of your fur baby. They sure tug at our heart strings.
Anyone else participating in the MBC Project? I got my saliva kit about a week ago. I'm excited to follow what the research finds.
Waving hello to the rest of you. Beautiful, sunny day here. Hope you all have the same.
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Posted on brain met site
so first the good news (per onc scans were tremendous, everything shrinking). Onc gave me results 11/2 hrs after scan when he he was running out to see sick patient so it was quick but great news. Will stick with new combination of treatment- Eribulin, Rituximab and Zometa. Pray it will last a long time. My priest gave me some Holy Water - not had any since I was a small child so feeling blessed
The long version is that the previous 2 month period was ghastly with side effects of aphasia and confusion and loss of consciousness then general weakness. As I said whilst in confusional state my husband told me I pulled my port out but I think he meant the needle? Whatever, it was horrible for him. He thought I was going to die at least twice. I don't remember most of it and don't want to.
I've been home since just before Easter but not yet gone back to work. Still getting tiredness and stomach cramps but I can live with that. Peace to all.
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Greetings and good wishes to all.
Bjsmiller,
Yes, I got my kit from the MBC project. Boy, that was a lot of saliva! Mailed it back right away and hope that something good comes of it
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Bosco, It is good to hear from you. WOOHOO for your scan results. You and your husband will definitely continue to be in my prayers. I am sure that he past two months have been difficult and challenging for both of you. I hope your new treatments give you a long run of good results.
Bjsmiller and Caryn, I have not yet received my saliva kit. I did not send in my response right away, only because things in my life were crazy at that time, so that most likely means that I will receive my "spit kit" later. I share your hope that something good comes from the project, a significant breakthrough.
Lynne
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I also got my saliva kit this week and sent it off. It is a lot of saliva! Hopefully it will help someone in the future, and I feel like we are contributing in a small way to find the cure one day
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Hello everyone, and thank you for the encouragement . I did have a nuclear bone scan done in February 2016 which mostly shows improvement overall. I think the reason my onco is concerned over higher tms is because since my stag 4 dx my tms had stayed in the normal range but since November of last year they have continue to increase and double from one quarter to the next ( she only orders them every three months) so there may be something we are not seeing in the scan. I agree with her and beside I'd rather get two injections a month than three infusions and everything that goes with chemo including hair loss. I've read a lot here about Faslodex / ibrance that I feel encouraged it will work for me.
I'm scheduled for my first Faslodex shots next week and I should hear from the specialty pharmacy soon for the ibrance. I'll keep you poste.
Aurora
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Aurora,
I've been pretty impressed with the Walgreens Specialty Pharmacy I'm supposed to use for Ibrance. They phone on a regular basis to see how I'm doing. They put me in touch with a pharmacist to make sure I know a few things about taking with or after a meal, to avoid grapefruit and grapefruit juice etc. I hope your process is smooth and professional. Good luck -
Amy
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Lynne – we actually had a good laugh, I was riding in the back seat of the car not to stress my back, she was driving. It was supposed to have been the other way around. We had a grand time, we bought knick knacks, was very relaxing. Just to think how fortunate we are these days to have the internet, main reason? So the men could stay busy when they are home 24hrs! J Agh, Can you imagine what they would be doing otherwise? Btw, we did get some great furniture shopped on Costco's site, believe it?
Bosco WOWOWOW that's just excellent news. So happy for you, you went through so much.
Linda so proud of you, it takes guts, that's for sure. What you did was just fantastic. I read all these books written by doctors, and this is the way to go. Medical Mafia it is. I've read in those books how these doctors will literally go out of the way not to step on toes. How about that Dani went to a major Cancer Center, seeing a top guy there, and this doc was "scare" I tell you "scared" to say something different than her then oncologist. He is much older, much higher up in diplomas etc… and the guy would not speak without conferring with her onco. Ridiculous. I wrote a whole letter to him on my head, but I thought better not to send it, because I am always scared in case we ever need to get there again, he would not look at it too favorable. Now back to you, how long do you have to wait for results?
Deanna oh yeah, stress does not help any. But, so it goes. I do try, love a good laugh and a good book.
Aurora so sorry you have these changes. I do see that so many are happy with the Faslodex/Ibr – best of luck for you.
Dee I printed the article and read and reread it, yep. All true. Dani hates when ppl tell her how skinny she looks, I learned not to even say to ppl anything about their weight loss(one never knows why someone lost the weight), my DH last year had lost some 17Lbs (he did not have 17 lbs to loose), ppl were making comments, happens to be we were going crazy trying to figure out with different doctors what was going on, until one genius doctor figured it was one of his medications. Simple as that. After, colonoscopy, blood tests and much worries. I am learning to use the mantra "silence is gold" ! Thanks in forwarding it.
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Thanks all for your cheers and constant support!
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Was wondering- what saliva kits-what are they for? I guess I missed that!
Babs
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hi all!
Here's the view tonight from our balcony in the Okanagan. We have tomorrow here and the heading to Vancouver for the weekend.
Babe, the "spit kit" is for the MBC project. I'm waiting for my kit cheers, dee
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Babs, the saliva kits are from the Metastatic Breast Cancer project. They are asking patients to complete a questionnaire and then submit saliva samples. You must sign permission and they will also be studying our tissue samples to find out more about MBC. We don't get individual results but a summary of all the information they are learning. I would post a link but I'm computer challenged and don't know how but Google them and join in
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Good Morning all,
Dee, So peaceful and serene. Enjoy your trip
I have not received my kit yet, but have signed up with MBC.
Question.....I've started magnesium per onc's recommendation because I keep getting leg, feet, thigh muscle cramps at night that are pretty nasty. Charley Horse type, every night. I drink tons of water every day. Anyone else get those or have solutions? Thyroid scan today.
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Hello all wow I'm behind. This thread moves so fast if you miss one day your hooped.
Linda good for you girl I know how hard it can be going against the flow but our health is the most important thing we have so never stop.
Aurora welcome to the Faslodex and Ibrance world. I have been doing this trial now for one week no side effects besides increased hot flashes and I'm fifty one so I would have had them anyway. I'm thinking I may be getting the placebo instead of the actual drug because I have no side effects to speak of.
I wish everyone great success on scans and I am thinking of each and everyone of you.
Terra how are you doing haven't heard from you in a while?
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Lindalou, I sometimes get those horrible leg and foot cramps, in spite of adequate magnesium intake. I haven't figured out if it's the Faslodex or the Ibrance, but I do think dehydration is at least a partial factor.
Wendy, not everyone gets immediate SEs on Ibrance, which I'm assuming your trial drug is very much like. I think the telling sign re. whether or not you're getting the drug or a placebo will be where your wbcs are in two or three weeks. But, as I said earlier, either way you should be fine, since Faslodex is very powerful on its own. So try not to worry.
Lovely, relaxing photo, Dee. Hope you've thoroughly enjoyed your getaway. Thanks for sharing it with us!
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Dee. So beautiful and calming. Thanks for sharing
Bab
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Hi Ladies,
I am so excited for my train trip tomorrow - although it's not the quickest way to get to Seattle, I think it's one of the prettiest and relaxing, plus I don't have to suffer the indignities of TSA at the airports. Because my WBC is still low, I'll look like Mr Clean with my Lysol wipes and rubber gloves. First thing I'll do is scrub down all the hard surfaces of my room and bathroom - then cozy into bed with a good book. I'll be thinking of you this weekend.
Btw, I cannot recall if I told you about getting a cortisone shot in my left hip. Wow, what a huge difference it made. I can walk without a limp, I don't ache while turning over in bed and I can walk up stairs like I was 12 years old again. When the shots stop working I'll have a total hip replacement, which I think I can put off until 2017. The good news, I have arthritis in my hip; it's not damaged from bone mets which makes the surgery and the outcome much easier for everyone concerned, namely me.
I wish I dealt with the hip pain 18 months ago when it reared its ugly head, but I have to remember, I was also going through reconstruction problems and radiation, chemo drugs, AL's, etc. I guess other priorities got in the way.
Have a great weekend.
Amy
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Enjoy your relaxing train trip Amy and your family visit. I'd be Mr. Clean too!
Learned something yesterday. My lab came back as very low for magnesium and MO said most likely caused from the Prilosec and Faslodex. So off Prilosec and find something else and on magnesium which should help with my leg cramps. Now I have the big D! TMI....... Anyway, thought I'd pass that on.
Patty how are you doing?
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Amy glad the cortisone worked so well
Babs
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Good morning,
Amy, Have a good trip. There are so many germs on trains and planes, that everyone should be wiping down surfaces. I am glad the cortisone shot is working so well. This was probably the best time to have it since, as you said, you had a lot of other things going on 18 months ago.
Lindalou, Sorry about the big D. That is never fun. I hope the magnesium makes those cramps disappear. How did the thyroid scan go?
Dee, That is a beautiful picture that you posted.
We are heading to Boston today. My DH has his post op visit and will have staples removed from his last surgery. He is much stronger than he was during our last trip to Brigham and Women's. He is improving daily.
I got myresults of latest TMs, CA27.29. They didn't exactly go into double digits as I had hoped. They are 166.6 (love numbers with 666 in them ugh). That is back to where they were in September. In January they were 141, so this time they increased by 25. At least they aren't in the 900s like they were in July, but I am bummed. I can't help thinking that stress, poor eating habits, and lack of exercise during the past few months contributed somehow. I haven't talked to MO yet, and he isn't in the office on Fridays. Other blood tests were good, and I feel great, so I don't know if he will want scans or wait to see if this is a trend or just a one off. I haven't yet told DH. He will be more upset than I am. I'm dealing with it okay. So as of today I will return to eating right and exercising regularly. Anyway, today we celebrate dh's step forward towards recovery. YAY!!
Have a good day.
Lynne
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So after a real crazy and anxious day at 11pm last night I got the Pet/Ct report, haven't gotten the MRI of the brain yet.
I had a quick talk at that hour with Onco, and we will continue this morning. So would be great if I could get your input before I speak to him, really appreciate what you think.
First yes, there is stability, but there is progression. The Medical Director the way he wrote the report in my eyes, it looks like I should be on also on whatever he is on. (joke). Well right off the bat, first he writes there is evidence of widespread multifocal mets skeletal disease. Then he writes there is stability… Then… the extent of disease throughout the axial skeleton is without significant change although there is suggestive increased activitiy in the spinous processes in the cervical and thoracic region.Stuff in the skull is "reidentified" (did not give me sizes with I hate) the pelvis are "relatively"stable, and sternum is increased.
I kid you not!What say you???
So sorry for the long story above, BUT really?? Doc told me well…its stable with some progession, can you faint?? In the Impressions: again overall stability, and then.. Multifocal hypermetabolic mets skeletal disease with evidence of progressive changes in the right and left ribs(more than before), and the thoracic and parietal bones..agh
So we started talking about changing something in the combo – Ibr/Letr, he started saying something about Xtandi – did anyone hear about it, it's primarily for prostate cancer mets. He is thinking in doing something with Ibrance...I don't know yet.Lindalou I heard a banana before bed might help. They used to give Quinine, pretty good stuff. If you could get someone to prescribe it, that would be great.
Amy have a good trip.
Lynne first I don't adhere to the fact "that you brought it on", I've read a lot about it, and am no so sure we have that kind of control over this horrendous monster, it's more complicated than this, i think. How about maybe adding something to what you are taking now? How long ago were your last scans? 3 months should be an acceptable time to redo it.
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Amy have a great trip I love travelling by train. When we were living in Oregon I wanted to take the same trip as you are about to embark on but never made it. I'm going to enjoy hearing how it was. The train goes quit a bit a long the ocean I believe eh? Enjoy the view you have the perfect weather for it.
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Momall, there is a thread that Romansma started a while ago called "Androgen Receptor Testing & Treatment". I'm trying to paste it but doesn't work. If you search it, you'll see a few gals tried Xtandi.
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Mom- I sometimes wonder that when there is healing with progression that maybe it is similar to prostrate cancer where some are hormone pos and some are not. Mentioning a drug that's used for prostrate ca flagged MO is thinking along those lines. Also they sometimes will radiate the areas not responding. All in all Dani is always in my prayers. Hugs. Xxxx0
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AMY have a great trip! Good ole cortisone!!
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Lynne thinking of you as always! TM make me crazy. I just got a great report with the biggest jump up ever. Scares me. Glad staples are coming out. Have a safe trip into Boston! So cold again. The weather here is like our TM makes no sense and is unpredictable!!!
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