Bone Mets Thread
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Hi Sisters & wow, more men are posting on behalf of their fighting wives! Welcome!
I am woke up this morning with scan anxiety, went in to MO to get results, only to find a different doc was filling in for him. She kept me waiting almost an hour, and then delivered my bone scan and CT results with no real background on me. She was trying to tell me the TM don't matter, when they have always shown trending well. They were down another 25 points (135) but I have significant progression of bone mets to my femurs, front and back, and my right knee, and both pelvic joints. I wasn't too surprised because I was having new pain, pretty severe, to my knees and thighs for the past month now. And so, because my WBC were low (2.46) they cancelled this week's CMF and had me do X-rays of my legs to rule out left hip fracture or any fracture.
Here's my question to the ladies who have had recent hip/knee replacement. Did you have to do this because of the Mets and related fractures? The MO said if I have hip fractures I will need to have an Onc Orthopedic Surgeon put a pin in my hips to prevent "catastrophic hip fractures" from happening. I'm none too pleased with this news. Im ultimately waiting for my regular MO (who is wonderful) before I make any decisions.
The other bad news is my pleural effusion warranted a chest X-ray, and I will find out Monday if they want to start tapping it and draining. So, in spite of all this bad news, I am happy because my husband and I recently got a new 3 month old kitty. He is so loving & playful and makes us both laugh, which is needed right now.
I'm also supposed to go to Bandon, OR for a mini-vacation so please pray I don't have anything that interferes with that trip coming up Nov 14-19.
Please know I'm keeping you all in my prayers. May we have good scan results and no progression! Happy early Halloween!
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Patty so glad you got to do that with your dss. We need to enjoy being with those we love!!!
Kaption good scans are a reason to celebrate!!! TMs really aren't important!!! Happy for you!Babs0 -
akshelley- prayers for clearer information, some good news and your much needed vacation! I hope your regular MO can get with you soon!
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Patty so great to hear that you are doing well. Those good days are the lights we keep striving for eh?
Lovingisliving I'm sorry to hear about the progression this is surprising to me since he is only a grade two . I was off treatment for a month till they figured everything out, no problem. Has he changed his diet at all?i know that might seem of minimal importance but I find its huge. I wish you guys all the best😊.
Hallo everyone else I read but post less lately big hug to you all.
Wendy
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nope haven't heard from her, funny I was thinking about her last night. I'll message her we were supposed to visit with each other on one of her trips over to the mainland. I'll check
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Kaption, that's great news!!! Am so happy for you. Hope you get a really long time on faslodex!!!
The vertigo continues. And now my right hip and left leg are hurting. I'm almost certain it's from picking up and cleaning up puppy messes ten or fifteen times as day as well as trips outside And not eating right. Am thinking the puppy may have to go.. he was part of my bucket list and I really wanted him but it's becoming an impossible situation. The deal was if I got him and anything happened my son would take him. But now my son is saying if he takes the dog is going to have to be outside in a pen. They already have an old dog who is housebroken and they aren' t prepared I don't think to try to Housebreak this puppy. Sigh. This was an expensive mistake
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wendy. Not sure if I complimented you on your new avatar. Pretty
Thanks all. Hugs
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Oh, Gracie, I'm so sorry about the puppy! Dogs are indeed a comfort, but you have to do what is right for you now.
What about adopting an older, potty trained dog? There a lot of pure breed rescue orgs. out there. We got our rescue Bulldog Sofia thru one of them. She was three and a half when we got her. When I look at her and play with her, I don't think about Mr. Cancer.
There's NO WAY I could handle a puppy with all my bone and hip mets right now. It's tough enuf for me just to bend over and put her food dish on the floor at night (DH works nights; he brushes and feeds her in the AM and picks up all her dooties, so I only have to feed her in the evenings....about all I can handle these days).
Sending prayers....hopefully the potty training will go quickly so you might be able to keep the pup
).Lita
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LindaE, Thank you for the update about Dee. I am glad that she is doing well and is stable. Stable is always good. I hope you get those scan results soon. I think each med student should spend a few months as a patient just to see what it feels like to wait for results, sit in a waiting room for way too long, hear a doctor give ambiguous answers to questions, be rushed through go an appointment, etc.
Gracie, I am sorry to hear about your increased pain. I hope it resolves itself. The puppy problem is a sad one. Hopefully, he will be house broken soon, and you will be able to keep him. It would be sad to think of him spending all day alone outside in a pen. Maybe you could find someone other than your son who would like to take him if things don't work out. If you cannot keep him, do you think that an adult dog from a shelter would be a good fit for you? You could make sure it is housebroken and has a good temperament.
Akshelley, I have come to depend on my MO and have a sense of calm and comfort with him. It can be disturbing or disruptive when we have to see someone who is not familiar with us or our history. I think the worst possible scenario for that is the one you just went through - getting scan results from someone different and then having treatment plan developed by that person. When will your MO return? Are you comfortable enough with him to call to ask questions when he is back? On a different note, are you going to post pictures of your new kitten? I guarantee that you will put smiles on our faces if you do. I will say a prayer For you, and I hope that you will be able to take that trip you are planning.
Enjoy the rest of your day, Lynne
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Thank you Wendy, Z, Lita, and Linda and everyone else for your support. He actually had to go back to the ER last night. My other brother called an ambulance because there was no way he could get him in the car on his own. He was in just as much pain if not more than before. We're still waiting on what the plan is to control his pain.
Those stats on the bottom are actually mine, not my brother's. I actually have no idea what grade his cancer is, but I do know that it's hormone positive and HER2 negative like most male breast cancers. He is BRCA2 positive, and I am not. But still I was diagnosed 6 months after he was.
He's tried to change his diet in the past but he doesn't stick with it. I have changed mine completely (no dairy and less animal protein in general). He also has diabetes so it complicates everything even more. His first treatment Taxol gave him really bad neuropathy that he's still dealing with 1.5 years later, and that also limits the chemos he can get. I'm hopeful about the second opinion. I really feel like they can help him more than his current doctor.
Hugs to all.
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Goodness, Lovingisliving- my heart goes out to your whole family!
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Patty, are you feeling any better?
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kaption hey. Yes having a good day
Lynne. I 2nd that ! Med residents should shadow as a patient.
I've been up and about all day. I made supper this morning at 9am. Spaghetti, side salad, fruit salad, and banana cream pie. Often I run out of energy or the pain is worse in the evening and I don't wanna cook. Now all I gotta do it warm it up and dish it out with some heated garlic bread. I say I am going to do this all the time or use the Crock-Pot but somehow I don't. Many nights I am scouring fridge for leftovers or sandwiches or frozen pizza. Ugh. Sick of that food.
Hugs to all
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Patty, May I join you for dinner? It sounds delicious! I think that many of us run out of energy by the end of the day. I think you are a superstar. You have faced many serious health issues during the past several months, and look at you. You are hiking, cooking, enjoying your family. You might only notice the fatigue, but the rest of us see the big steps forward you have taken since all those days spent in the hospital. I am not surprised that you are tired by the end of the day.
Hugs, Lynne
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hi all!
Figured I'd better check in after getting some emails. thanks for thinking of me. Hope's passing really hurt me badly & I needed to take a break from BCO & cancer for a while (ya right, a break from cancer, yes I'm delusional as well as MIA) I'm fine, but tired from all the traveling for this trial. We're spending 3 days a week in Vancouver with 12 hours of travel. But finally after 2 cycles with no problems, I only need to go every 2 weeks.
I had scans & tm's 2 weeks ago & was told stable. I don't have any numbers, the trial dr was running really late, so I didn't ask for details, just happy for stable. Had my mid cycle labs done today & they are low, so we'll see if I get bumped down to 75mg next cycle, hope not. I was hoping to stay on this drug for a long time.
I quickly scanned the thread, looks like there are lots of new gals, sorry you're here, but it's a good group. I will try to check in more often. Hi to everyone else. hugs to all, cheers, dee
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Dee - so happy to hear you are in the second cycle and stable! as i recall you had a rough start. thanks for checking in. hope's passing knocked me for a loop as well. one would like to just turn to another channel sometimes ...
>Z<
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Dee- so happy to hear the word "stable" for you-music to all of our ears!
Babs
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50'sgirl: Yes, I'd love to share a picture or two of the new kitty--"Odin". He is turning out to be a perfect fit for our family, but he's full of energy!
I decided to just tell my son the basics until my MO comes back. He is due back Monday, but I probably won't be able to see him until mid-week. I am going to ask for radiation to the right femur, and then to go back on CMF for at least another month.
Happy Halloween!
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Shelley - that cute kitten is the best therapy. Hope you get all your answers next week. Nothing like having our own MO who knows all our history. I didn't have hip/knee replacement but I had to have a rod inserted in femur. Bone was so badly damaged from met and was told by Ortho it could fracture simply by turning in my bed.
Dee - good to "see" you and congrats on stable!
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*cross posting*
Hi everyone, I got my Xeloda delivered this morning and I just finished talking to the specialty pharmacy. I'm supposed to take 1-150mg and 4-500 mg 30 min. after breakfast and same after dinner.
Another 10 pills a day! I already take 10 so that's 20! 
and he said to start using the udderly smooth cream now BEFORE the symptoms appear! I'm sorry for all the exclamation points but after being in such an easy treatment as Ibrance+faslodex I'm in shock! Please I can use words of encouragement and support.aurora
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I am very humbled by all your support and good wishes. Thank you. Thank you.
Mary I think it's great that they are addressing the issues. I do think they were so scared to do anything for Dani, and it kinda got (it is) out of control.
Dee wow, I really missed you. Very tough, the traveling really takes a toll. So glad you got company. Wish you the best!
Annie so nice to see you around.
Lindalou yes, Dani had it done from a bone Biopsy. It did give some specifics, but unfortunately these tx that it's supposed to target it's not doing anything.
Girlwithacu good for you. The thing about the rules is funny, children do worry about their day to day most, exactly what you said, who is gonna take me to the zoo.Oh, my "the specialty pharmacy" is a trip. But it's the only pathway. Maybe you could have your go to person, that could make things a bit easier.
Aurora hey sure take their time. Does the onco's office help with the Insurance, to hep get through faster?
Babs hope for the best with your biopsy. Is your DD still here?
Bjsmiller thanks so much for your thoughts.
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Amy, that is wonderful news. So nice to be able to do things for yourself.
Kaption, yeah for the good news. So happy for you.
Lovingsli it's a tough question, sometimes I wish I would have waited for a certain time, doctor but at the time we don't know. I do know that Dani's doc did not want her to be w/o therapy in her case
Patty that sounds like a lot of fun. Yea you right.
Lynne welcome back! What a beautiful trip. And so glad for your hubby also. Thanks for sharing.
Oh Gracie so sorry you are feeling so bad. Puppy in a pen? That's sad. Kudos to you for knowing how much you could give of yourself, you certainly tried and if you are giving him away, maybe the next person will be like you that actually wants good company.
Akshelley it's very reasonable for you discuss this major surgery with someone that knows and respects you. Hey, that little one is a keeper.
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Aurora, they generally start you on a higher dosage to try and knock it back quickly. They started me on 8 pills a day; now I'm on 6 a day. Good that they want you to start the hand Cream NOW. Be sure to slather your feet, too.
Lita
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Having lots of hip pain...I do have hip Mets, so I'll find out if there's progression in 2 weeks. Getting Zometa on Monday. Hope it helps with pain.
Lita
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I have a pain in my rib cage, right under my left breast. It radiates back around to my spine. I am hoping it is a small fracture or maybe something fantastic like a muscle strain. There is a word for weird pains in your rib cage with no known cause: costochondritis!. They say it may be caused by new activities and I have been mountain biking a lot. Hoping that is it.
I am concerned because I had a sternum met which looked like it was healing in the last scan. I also had liver mets, which had resolved in the last scan. hoping they are not back. I did have a doctor palpitate my abdomen and didn't find anything. I suppose mets to the sternum and ribs hurt if they cause a fracture ... Curious if anyone has had any experience with this.
Worrying about every pain because I've got stage IV cancer ...
>Z<
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Me, too, Z. I have a few rib fractures as well. This disease does make you question every twinge.
Lita
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Aurora. Yes slather up both your hands and feet now. As Lita said they usually start you at the max number of pills and then lower it. For me X was the treatment that worked the best and lasted the longest(10 months). I hope it works as well for you but for much longer!!!
Had my second CMF chemo treatment yesterday. I am concerned because my TMs went up a lot in 3 weeks and my red and white counts tanked as did my neutrophils. MO may put me on Neulasta but she already moved up my scan to next month in case.
Momall yes my dd is here. She came over last night after my chemo treatment to be with me. She's just so wonderful I'll truly miss her when she moves!!!
Babs
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Hi Z,
I've recently had two different pains that turned out NOT to be mets progression; one was osteocondritis, sharp pain and bumpiness in the sternum area, which felt like mets but was caused by excessive coughing from a cold I had recently gotten over, and the other was a sharp pain in the bottom ribs on my right side in the back; this turned out to be a torn or pulled muscle that felt for the world like a fractured rib. It took 3-4 months to slowly resolve. Although I worried plenty about them, I didn't even bring them up to my MO because I didn't want to risk a big trip I had planned with my daughter to europe last summer. When I got back, I had a PET/CT scan that was all clear-, so none of it was anything- so that's the problem, this cancer is such a mind game. How to toughen up mentally is the challenge> Maybe decide that until you know for certain of any problem, you should assume it's nothing and keep on having fun? I want to be Jimmy Carter, and get some kind of immunotherapy combination that induces my immune system to consume the cancer 24/7 and be able to ignore all of this!!
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I'm hoping some of you would be willing to share your experience with me. My last scan showed a good response in the known mets, both liver and lung. But one new met in my spine (t8). After re-reviews of previous scans, radiologists could find absolutely no evidence that it was there before, so progression.
So disappointing since we fought hard to get me on an immunotherapy trial, I'm tolerating treatments well and it's working on the mets were most concerned about.
I know my onc consulted everyone and anyone, tumor board, trial board, trial docs, etc. In the end the recommendation was to stick with the trial for two more cycles. Basically wait and see for a few more weeks. I know a lot of weight was put on the fact that I'm not experiencing any pain.
So scans next Tuesday and I'm trying to get my thoughts together in anticipation of mixed news again.
1. Is pain a good indicator of activity in bone mets? It's approx 1cm. T8
2. Would it be a distinct sharp pain, or more generalized ache (because who doesn't have a generalized ache in the middle of their back by the end of the day)
3. One option is to use radiation on just the bone met to keep it in check, any thoughts on doing this early, before I'm experiencing any pain?
If I can hold out two more cycles, eight weeks, I will have completed the minimum considered a full course of the immunotherapy drug. There are indications that the benefits of this will last well into my next treatment. Of course I am especially worried about more bone mets getting a foot hold while we wait.
Sorry for the long post! Thanks!0 -
Sherri,
I only have bone mets and many are in my spine. All the lumbar and thoracic areas.
First, my RO says they cannot gauge pain by just looking at the scans. Most of my spinal pain is achy, although sometimes sharp from the lumbar areas. It also sometimes refers around to the ribs. I'm not positive, but my experience has been that spine mets are only radiated for pain. But, given you in a trial- that maybe a different set of guidelines.
Hope that was somewhat helpful.
I was just told yesterday that the femoral necks and upper arms are radiated before pain (when significant mets show up) because they are weight bearing and can break before there is pain.
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