Bone Mets Thread
Comments
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HFC...fatty liver is no problem. It was mentioned on one of my scans (liver mets) and my onc said it was not to worry about. He said it's probably more of what I'd been eating prior to being scanned (I was on vacation..HA!). So, I'll celebrate your stable along with all our sisters!
Trying to catch up on all...prayers for healing & strong days :-)
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How infuriating Linda. Seething for you on this side of the Atlantic.
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Linda...ugh...I'm sorry there was no one who could make the decision to scan the necessary areas. Kinda wishing they'd have suggested they'd postpone until onc could be reached, but maybe there won't be concern about scanning again soon if it's in a different area. I can imagine your being upset...knowing an area of great concern isn't being checked. Hope you get an explanation soon!
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Oh, Linda, how frustrating! No wonder you were in tears. It's bad enough to have to go through scanning... then to feel they're not even addressing an area of concern. I guess that's a lesson we can all put in our play books -- to check pre-scan day to be sure the orders includes what we think is being done.
HFC, so happy for your stable scan! YaY! And I agree with the others. That phrase you don't quite understand sounds like a benign observation -- nothing flagged as a concern or needing to be watched. You might want to Google fatty liver or ask your PCP about it.
Aoibheann, do you ever use a heating pad? I use mine a lot when I'm in pain -- including sleeping with it, and moving it to the most painful area each time it shuts off and I reset it.
Happy new week, everyone! Hope its full of only good news and happy things for everyone! Deanna
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Linda, how frustrating! I just came from a scan and it was terrible since my veins are very thin in order to put the thing and then to put the liquid that I can't remember the name... so I was holding myself from crying. During the exam my arm hurt so much... After the exam finished, I just went into the changing room and started crying. My husband was waiting and he asked how was it and I just said "terrible and I don't want to talk about it" . That´s it. Went home. If I tell him how I felt, I don't want to imagine his answer... probably, hey it is just a couple of minutes for an exam and for your health. I just don't want to hear that. So better off no talking.
HFC, great for a stable scan!
Regarding pain, same here, hard to find a position! Hope that when I start new treatment it will get better!
Take care and have a great week!
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Nurse called back and will check scan results for lung infection, will have blood work request ready for Wed when I have bone scan and will speak with Onc (who will be back next week) to reschedule a scan for the neck. I'm just so tired from coughing and fed up of this MBC crap and errors, it doesn't take much to cry these days. But oh so happy to have this new nurse navigator - don't even want to think if I had to deal with the one I had before. And while I had the nurse on the phone, I told her about the mistake with the infusion last week.
Dune - quite a week ahead of you - will be sending you good vibes.
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Linda, poor you, that was horrible for you. I can empathise with how you feel as the same thing almost happened to me at my last scan. They weren't scaning my head as it hadn't been included in the request. They were adamant it couldn't be done despite all I said and I could feel myself reaching meltdown. Luckily someone was kind enough to contact oncology who said it was an oversight on their part and head was ct'd. It's shocking how difficult it is to rectify an oversight or mistake.
Deanna, I never have used a heating pad. Tks, good idea. Must get one.
Dune, hope you'renot too tired after all your tx.
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Linda just wanted to let you know I went through the exact same thing! Coughed for three weeks non stop to the point of gagging and wheezing. Lucky for me I had an apt with my oncologist .He said I had bronchitis and prescribed an oral inhalation (albuterol sulfate) which did help quite a bit. I wanted to mention that I was on tamoxifen at the time and due to progression he took me off it. Three days later I would say my cough got almost 80% better although I am still wheezing with the occasional cough. Wondering if the tamoxifen was making it worse. I also had a scan of upper chest area - everything was clear! He now wants me to see a pulmonologist! It never ends!!!! Feel better soon!
Deanna so glad to see that you are feeling better!
Hope this is a better week for everyone with a lot less pain and only good news!
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Hi all. I've been away from the thread having my 4th TCHP plus consulting with an oral surgeon, but thank you for all for the welcomes and advice! This thread is so active I'm having a hard time catching up with all the new posts! So my dentist is young, but at least she did refer me to this great oral surgeon for a consultation; I loved him (mostly because he agreed with my position I'll bet, ha!). He and his colleagues agreed I didn't need the wisdom teeth removed, even the one my dentist was especially concerned about. He thinks my body no longer recognizes the "tooth" as a tooth and is in the process of reabsorbing it thus the dark shadow on the xray. He said most likely it is already fusing to the bone and an extraction would be awfully hard on me not to mention the minimum six weeks recovery! I've generally had good teeth, never had root canals or any extractions, and since it's not bothering me at all, he felt it unlikely that this tooth will cause me problems, so am going forward with Zometa on 10/1/15. He thought it more important that I go ahead with the treatment plan.
Oh also, my MO said she prefers Zometa because she has seen it work against cancer cells in the bone as well, even though the literature and manufacturer all say it is not for cancer treatment, she thinks it has "off label" properties that others don't. Best to you all this week.
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Interest info about Zometa.
How is Zometa given? Vein right? How long? I am just wondering coz I will start with that and I am wondering if my veins will cope.
thanks!
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Terre, forgot to say earlier that your comment about putting out of line men in place gave me a good laugh! Why is it I have no doubt that you're speaking the truth?!! I would love to hear some of your best come back lines or stories!
Bjs, so glad you don't need those wisdom teeth out! Boy, that's a relief!
Aoibheann, when you buy a heating pad, look for one that's extra long, so that it covers larger areas, like both sides of your hips or shoulders or ribs at the same time. And they may all have them now, but a one-hour shut off feature is good, so that you can fall asleep with it on.
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Cuculi- Zometa is given IV and the wise ladies here suggest it be given in 30 or 45 minutes. Some cancer centers do it in 15 min. Ask for the longer time, it really makes a difference.
LindaE - I can feel your frustration. Hoping that on Wednesday you will get it all resolved. Aren't nurse navigators the best?
Dune, Hope the week goes well for you. You have a lot going on.
Aiobheann- I use heat too,and have found a lap size corn bean bag with a soft flannel covering that I warm up in the microwave for 2 minutes. I use that a lot, but I think Deanna's suggestion might cover more space where my usage is more for spot areas. Hope you get some relief.
Well....I saw my orthotics girl today and I got my brace. I had dh take photos of front and back. I'm supposed to wear it 1-2 hours a day to start out with. I'm sending the pictures so you get an idea if it would work for you. It is called Horizon by Aspen Medical Products. It helps keep my spine straighter and makes it more stable. I can really feel the difference just wearing it a little today. I've had some modifications to it, because it is too tight on my upper ribs that have been radiated. I'd say it weighs 2 lbs. You would need a RX from your MO or surgeon to get one.
Best to all.....
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That brace looks really interesting, Linda. Is it weighted to pull your shoulders back? Be sure to let us know how it works for you. I am still using the copper one my hubby bought me, and it really helps with the aching when it feels like my spine can't adequately support my torso. But yours looks like it's corrective as well.
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Thanks Lindalou for the answer!
I am so not in the mood of starting this ordeal again. I was so positive and so full of enthusiasm during 2013 when I was diagnosed. Now, not even my 5 year old son makes me be enthusiastic... I just look at him as if I were watching a movie. I am sure it will pass away soon and get my feelings back... Although I do feel sad for my mom, sister, husband and son.
Anyways, I am planning to redo my son´s room, although I am hiring someone to do it... but it is still a project.
Well, now gotta do some work at the office in order to delegate certain things.
Take care and thanks for your posts!
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I think my MO was planning a 15-minute Zometa infusion, but I'm going to be sure and tell them I want at least 30 as I've read on this thread. One thing I didn't think to ask is how long or often I will be getting infusions? Forever or until it stops working? I think I've read once a month and if all goes well, the infusions are spaced out much less frequently like every 3 to 6 months? Thanks for all the good advice. I love reading all your posts and really feel more informed and empowered by this thread.
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Deanna, Yes it is weighted to pull my shoulders back. Surgeon told me that this of course won't stop the rounding of my shoulders, but will help relieve some pain and will also help my back muscles not do so much work. I'm glad your brace is helping you and good to hear that it is helping with back fatigue at the end of the day. Love the lotions by the way!
Bjsmiller, the number of times for the infusions really depends on what your MO decides. I got it every 3 months, others get it more often. It sometimes depends on how many bone mets you have. Good Luck and drink lots of water.
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bjs - Onc told me a minimum of 2 years on a monthly basis. The frequency depends on individual circumstances. As long as my blood calcium levels are high - it stays monthly.
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Hi all,
Feeling blue. I'm waiting at the hospital to get discharged from the femur fracture. The wonderful orthopedist came in to check. He mentioned that he sent out tissue samples to check the cancer. Yippee and that I should have an orthopedist monitor the other hip as there are lesions there(they also radiated those in July). I know he's trying to be helpful and give me the best care possible, but it makes me feel like crap. That everything is about the cancer, which I know it is, but I want to be a normal patient with a normal freak cracked bone. I'm sorry. I know this is silly and things could be much worse. But I spend so much time thinking, breathing, living this fear. I'm scared to pieces about the pathology and what it will show. I'm suppose to have a pet scan coming up next week. I'm just always scared.
I want to change my thinking. How hard is it yo project a good outcome? For me, little glass is half empty girl, so very hard.
Thanks for letting me rant.
Rachel
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Rachel - You will be much more comfortable at home. Your orthopedist is a wise man. Tissue sample is also a good thing to confirm the pathology which will likely be the same as original biopsy. Not fun, it sucks in fact but you are getting good care. An ortho on our medical team is very important. I love mine. Your thinking will change once you get home and recover. It will take time and slowly but surely you will be able to walk without being worried. Don't overdo it, take pain meds if necessary and let yourself be pampered. Ask or accept help. When I came out of the hospital after this surgery, my social worker arranged for temporary care at home (blood work and infusion, partly subsidized home cleaning). Sending you zen thoughts and healing vibes. And don't forget, we are here to support you.
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Hi all!
My onc appt was a bit disappointing. She told me that my mets were more prominent, when I asked what that meant, she just repeated herself. I don't think they really know. My TMs are good so I'm going with stable for right now. Though she wants to put me on A/A combo. That scares me, all those horrible SE's.
She also talked about faslodex and a trial that includes faslodex and a new drug which could be Ibrance but has not yet been approved in Canada, her words not mine. But the trial starts in the fall.
Take care everyone. I won't be here much, DH and I are taking a driving holiday to jasper and the Okanagan. I'm going to go drink a whole lotta wine and drown my sorrows!
Cheers, Dee
Edited for crappy predictive spelling
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Hello to all,
Rachel1, I'm so sorry you're feeling blue but as Linda said you will be much more comfortable at home and once the healing begins you will feel better. I wish I could take your fear away, sending you healing hugs and positive energy.
Linda, what an ordeal for you today, I would have been reduced to tears too. When I had to have an MRI to see if I had MS the neurologist said it would take an hour and a half in the machine, so when it was completed in less than an hour I questioned it but they said they had done all they were suppose to do. It was a 4 hour drive to this hospital in a snow storm and I end up finding out they neglected to image my cervical spine!!! Yes we had to go back a week later and have it redone. Not quite the same as your situation but I can understand how you would have wanted to have that area scanned since you were already there. Praying for good results and hoping your cough has settled down.
Dee, could you possibly speak to the rad onc? I just really feel strongly that the mets that look more prominent are the ones that you just had radiated, you were scanned so soon after you finished radiation. This happened to me and I had argued with my original onc that I should not have had a scan so soon after rads. He made me go and the results showed progression! BUT the rad onc was a step ahead and emailed my onc saying this was highly unlikely as there was still inflammation from the radiation and that this scan should not have been done (as I told him) but because he was so arrogant he would not listen to me. Anyway the subsequent scans showed the mets were actually regressing and healing. I was very upset about the whole situation because there was always that question of was this really progression? It just added to my stress. Praying this is what has happened in your situation. Enjoy your holiday and drink all the wine you need but don't be sad, sending positive energy and healing hugs.
Hugs to all, Annie
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My blood counts (white cells I think) prevented my getting chemo today. Bummer. Oh well. Hopefully I can rebuild my numbers. How do you keep your numbers up?
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Hi ladies, a bit of a better day today. I got a new iPhone six so it's much easier to log onto bco which is cool. I didn't have a lot of pain today but I didn't work as well. I'm feeling a little better than yesterday also I got a call from my nurse and my white blood cells are coming up and I'm allowed to continue my Ibrance 75 mg right now and I don't have another blood test until maybe October 2. I spent a lot of time with my daughter today which was wonderful and we also even took a walk and then later in the day a friend came over and helped me with the two kids which was really good and gave me some time to relax.
I can't answer each individual response I'm much too tired to do that right now. I'm wishing everybody a really good week ahead and healing vibes for those who need it.
I'm using the little microphone on the iPhone six to just talk my response into the phone so if my responses seem a little strange that's why. I'm just giving this a shot-does anybody else use this feature?
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I will ask for a 45 minute infusion as well!
From most of the posts, or all of them, pain is a common theme, a "common denominator". I would like to know if there is someone out there with no pain or if pain was reduced with the treatment used.
On the other hand...monthly for I don't know much long with Zometa and without pain reduction is not my ideal quality life. I will have to talk with my doctor soon without my husband. I friend of a friend used morphine patches or something like that. However I am not sure what cancer she had.
Hope you all sleep well.
Take care
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I was in so much pain when first diagnosed. I have mets in my hip/pelvis. I limped, couldn't put weight on it and had difficulty walking up the stairs. It hurt so bad i would cry. I have had 4 treatments of THP and zometa. My hip is healing and I no longer have any pain. I use no pain meds. I walk 5 miles a day, well I try to and tonight I played soccer. I get zometa once every 6 weeks.
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Thanks txmom for your reply! It brings some hope for tonight.
I have a 5 year old son and I am feeling that I simply can't do so many things with him. Last night he said that Jesus can come to my room and heal me. This morning the first thing he said when he entered my room was " did Jesus come last night?" I am not that religious but I always pray and have taught him to pray.
So what you tell me helps. Thanks.
BTW, what is THP?
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Rachel, I hope you're home and resting tonight. It's important that your ortho doc gets a pathology on the tissue samples from your surgery. Mine did, and it was actually a relief to find out there wasn't nearly as much bc as I had been imagining, and to learn (in my case) that he possibly got it all (in that area) with the surgery. So what I'm saying is, it will hopefully turn out to be positive news for you too. In the mean time... for what it's worth... I think your anger is probably a healthy thing... maybe something you need to go through to get to a better place emotionally. And just a head ups on the pathology... if there is bone involved, it can takes weeks to get the path report back due to the process they go through to degrade the bone to test it. And I think Linda gave you some excellent advice about not being reluctant to ask for help. It will make things so much easier. One day at a time... rest & heal...
GG, have a wonderful holiday! I've always wanted to see Jasper. I hope you'll wow us with some spectacular photos! And I agree with Linda that perhaps some ongoing healing from your rads has been mistaken for more prominent mets. From what was explained to me, inflammation and progression look very much the same on imaging.
txmom, I can't believe you played soccer! That's living a bit dangerously!
cristina, that voice activation feature sounds very cool! And so glad you had a better day today!
Dune, pearlady has lots of supplement tips for increasing blood counts. She recently posted them on the Ibrance 2015 thread, but maybe PM her for her list. A few things I've been eating for WBCs & RBCs are pumpkin seeds, chia seeds, and molasses. But she has quite a few more suggestions if you're interested -- thinks like Astragalus, Maitake drops, and Shark Liver Oil. She can give you her complete protocol.
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This is definitely a busy thread... took me a while to catch up! Someone mentioned getting comfortable while you sleep. I use a heating pad but I also bought me one of those long body pillows. It bothers me to lay on either side for too long and I can't lay directly on my back for too long either. I find that propping myself onto the body pillow in different positions helps take some of the pressure off of my spine. Sometimes when I'm lying on my side I put it behind me to help take some of the pressure off of my rib cage. Anyway, there are lots of ways to use pillows to help angle your body in more comfortable positions. The body pillow has helped me a lot. The only downside is that I'm currently doing the hot flash mambo with the hormonal therapy... and hugging onto that big body pillow makes me even hotter. But, I just toss the covers off. There is always something...
I wish I had time to reply to everyone but I must get to bed... hope everyone has a pain free night!
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Please careful with heating pads. About 6 months ago I used on on my chest because it felt so good and I put it right on my skin. It felt so good! I woke up blistered!
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