Bone Mets Thread
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Hello to all. I haven't got to catch up on the thread just yet, but I hope you are all doing well. As some of you know I was just diagnosed in March and sometimes I'm still trying to sink it all in. I still have alot to learn and I'm glad you guys are here to talk to. It's only 3 months I'm on Arimidex and monthly Zometa and some days all I want to do is lay on the couch all day and sleep. I'm trying to eat healthy vegetables and fruits and any advise what to add to my diet is appreciated. I talk to my oncologist about how extremely tired I was but he kind of brushed it off and said my tumor markers are going down and all other bloodwork looks good so wants me to try and get out and exercise more. I just don't see that happening not the way I feel right now. Any advice or similar side effects anyone? I know this is just the beginning and I shouldn't be complaining but I went from working the last 26 years,sometimes 7 days a week to just wanting to do nothing lol.
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Hi Tee, I had much the same effects on Arimadex but put up with it for fifteen months before it was found that I had further progression. I was changed to Femara at that time and within a couple of weeks I was feeling 200% better. That was six years ago and I have been NED for five years now.
What I'm trying to say is that if your SE's are so bad or impacting really badly on your QOL then there is no reason why you can't request a change of meds. The docs all tell us that as stage IV it's all about QOL so hold them to it and ask for that change.
I don't post often here as I know a lot of you girls are going through hell and I feel a little guilty that I have responded well for such a long time. I do wish you all the very best in your treatments and responses........just know that I do read.
Love n hugs. Chrissy
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Tee - Doctors don't take these drugs and they hear about fatigue all day long so they don't get it. You have to forgive the way the brush off the side effects. I've been there. But your doctor's advice to exercise is sound and based on many clinical trials.
Exercise when you really don't feel like it is, unfortunately, really helpful to manage side effects and reduce fatigue. The problem with fatigue is that it is a vicious cycle where you do less, the toxicity builds up and your muscles weaken so you do less and so on. There are several basic body functions that require movement. That said, the amount of exercise has to be seriously adjusted to where you are.
A 15 minute walk two to three times a day is where you might start, and stay as long as the fatigue is wearing on you. And once you drag yourself through some (mild, appropriate) exercise, rest is critical. The definition of exercise has changed a lot for me since I got on these drugs. I am not going for my personal best these days. I am going for a consistent, daily, medical dose of exercise.
That said, I would consider the words of the wise ChrissyB. There is a point when the treatment is effecting your overall health so much that it doesn't support healing. That is a little conversation you have to have with your own guardian angels. When they tell you a treatment is doing more harm then good, tell your doctor you need a different medication
>Z<
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Chrissyb I'm so glad to see you here and I wish you wouldn't stay in hiding your opinion on many of these matters would be immensely appreciated. You being an exceptional responder should not make you guilty. Just as its not your fault you got mbc it also wasn't up to you to respond so well. I wish the researchers would study you and others like you to hopefully get a glimps at what makes it different for you and others like you. My plan is to be an outlier right now I'm 3 years out from mets and have great QOL. Can you remind me how many years NED are you
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Hi auroaya, thank you for you kind works.
I'm seven years stage IV with five and a half being NED and still responding very well. QOL is still really good and as soon as I'm on my feet after a hyster last week I will be opening my antique and craft shop.Love n hugs to all! Chrissy
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Hi Tee- Z didn't know that I hired her as my personal trainer. I think of her each day I push myself out the door. I took her up on her suggestion that pushing yourself to exercise could help. I have to do it a couple hours after starting my day I walk as fast I can. MO said I rather you walk 30 minutes and get your heart rate up then to stroll for 2 miles. I do have more energy but you really have to eat healthy along with it. I'm trying to take off a few pounds and really hit a wall at 4pm yesterday. Lesson learned after I had a nice dinner I felt better. It took me how many years to really understand Niki's logo of Just Do It?
Chrissy- nice to hear from you
Lynne and Z- praying for good scan results
MomAtt- I am watching that special "Red" phone to ring!!
Dee- I hope you the antibiotics have kicked in.
Hugs, Carol
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Chrissyb thanks so much for posting don't ever feel bad about your success . It's people like you that give the rest of us hope to continue fighting. I'm so so happy you are NED so happy😊
Wendy
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Chrissy, you were one of the first to greet me on the bone mets thread and your posts were always thoughtful and encouraging. I for one am thrilled at your NED status and I want to be just like you! You have a lot to offer us and we enjoy your presence here. Hope you are recovering well from your hysterectomy.
Hugs, Annie
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Yes ChrissyB please do continue to chime in and remind us that NED and a good QOL is possible. I used to feel guilty too (well, I still do) when I posted about my minor annoying SE's because others are dealing with far more painful and complicated issues. But I remind myself of how when I first joined this board I was desperately searching for stories like yours and even like mine. It is so important for us to hear about everyone's experiences; good and bad, major and minor.
Hope you are recovering quickly from your hysterectomy!
Cathy
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Good morning everyone,
Chrissy, I agree with everyone else. It is encouraging to hear about your long-term NED status. We all want to join you. Please post as often as you want to. We enjoy hearing from you.
Tee, I know how hard it is to get up and exercise when you feel exhausted, but as others have said, exercise will increase your energy level, and studies have shown that it can help cancer patients. Start small. Try a ten or fifteen minute walk each day and increase the time a little bit every few days. It will get easier over time. I now feel better when I exercise. I have the same treatment that you have, Arimidex and Zometa. I sometimes feel tired a few days after my Zometa infusion, but otherwise I feel pretty darn good. I would be annoyed if my onc brushed me off. How are your blood tests? No signs of anemia? Any symptoms of depression? It can cause fatigue but can be treated. Eating lots of fruits and vegetable is great. Are you eating enough protein?
Wendy, Did I read on another thread that your team had won a regatta? If you did, congratulations and WOW! I admire you and your team.
Well, instead of waiting to see me in the office this afternoon, my onc called me with my scan results. The bones have no new areas of concern. Yay! As he has always told me, it can take years for the effects of bone mets to completely disappear, but things look good there. The CAT scan picked up some spots on the liver, and he wants more tests to get a clearer picture of what is going on there. His office will schedule a PET scan, my very first. Oddly enough, I am not overly concerned right now. Maybe I am still floating down Aurora's river of denial, but my liver enzymes blood tests have been great, so I am optimistic. I am going for blood tests and Zometa infusion this afternoon.
This is supposed to be the last day of the heat wave here in NH. I am really grateful to the people who invented air conditioning although I must admit that I can sometimes be seen wearing a sweatshirt when I go into a grocery store. Enjoy your day, everyone.
Lynne
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Dee, Are you feeling any better
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Thank you ladies for the encouragement. Chrissy that's awesome Ned for so many years. I have changed my diet and still working on it but so far I have cut out as much sugars as possible, switched to unsweetened coconut and almond milk, lots of fresh fruits and vegetables. Do any of you use flax and chia seeds. I started using them in my morning smoothie but not sure if I'm doing more harm than good. I can't seem to find a thread on here about tips on good food choices. Zarovka I am trying really hard to take the advice about exercise. Some days I wake up feeling great and I go out and about but I pay for it the next day but I'm not giving up on this exercise thing. 50sgirl, Most of the blood test look ok. My ph alkaline has went from 269 to 144 since I started treatment which is only three months. My wbc and rbc is just a tad above normal. I noticed my kidney count dropped alot with the last month but my oncologist doesn't seem concerned. I always loved to camp and fish. My first rib fracture happened from casting out my fishing pole so I've given that up for a while. We plan on going camping for the weekend, it's our first trip since my diagnosis and I plan on doing lots of swimming. Any advice on a cover up being i only have one boobie, can I get my silicone one wet?
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By the way I also wanted to say I'm working really hard on changing my diet and still gained 14 lbs. since I started treatment. I was also diagnosed with hyperthyroidism a month before breast cancer. At that time I was loosing 3 lbs a month for no reason until I started my thyroid medicine. My thyroid levels are now under control but I'm still on the same dose from the start. I'm thinking they have went hypo and it's time to lower my dose. I'm now waiting any day now for the results of this and hoping this has to do with some of my fatigue.
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Tee
I do feel for you. I had a similar response to my first AI. (Exhaustion, weight gain joint pain and moodiness). I was on it at stage II and eventually stopped treatment, and here I am.
My first stage 4 treatment was AI extemestane. I knew I had to do things different to maintain treatment. So for me I accepted the fatigue and worked around it. I take naps most days. The only way I could start exercise was to walk with friends. When friends would ask what can I do, I would say walk with me. At the beginning I had 3 friends and had scheduled 4 walks a week. I still walk two to three times a week with friends but I can also go out on my own now. I do think the walking has improved my energy.
I moved to a paleo diet for a while, at the advice of a naturapath, and that helped me move away from eating too many carbs. Now I just try to eat mostly fruits and vegtables but will have occassional, pasta and organic meat or chicken.
I am thinking of you and wishing you luck. Feel free to PM me if you have any questions.
Chrissy you bring me hope keep posting.
Lynn great news about bone mets and I hope pet scan has more good news for you.
Momatt, you and Dani continue to be in my thoughts. You are a very courageous mom.
Peace to all
Mary
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good morning all,
Feeling like I'm finally climbing out of a hole, but still have a ways to go. I went back on Femera as per my MO's request.... I hate this drug! I read someone else said they went on it from anastrozole & felt 200% (It was Chrissy, I just went back & looked, congrats for so many years ned!!) I feel exactly the opposite, I felt great on anastrozole & feel like crap on Femera.
I'm not sure what I'm going to do at this point. three weeks ago I felt great, now I feel terrible.... dee
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Dee, I wish I had the power to make you feel better and to cure this cruel disease that we all have. Instead, I send you my sincere hope that you feel better soon and that the SEs or complications that you are experiencing are temporary. Maybe once the effects of your low counts subside, you will begin to feel stronger and healthier. We are all here for you. You remain in my thoughts and prayers.
Big (((HUGS)) for you.
Lynne
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aawww, thanks Lynne ((hugs)) back at ya! dee
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Animal C- Don't you ever feel guilty about posting how well you are doing, that is what gives us hope. Thank you for doing so!
Tee- When I was diagnosed stage 4 I immediately did Vegan. Well, it is hard and just recently I noticed that my glucose is on the high end of normal after a fast so I have modified and added in fresh fish that is not farm raise and cut out the bean pasta etc. I eat a boat load of fresh veggie and fruit..do as much organic as I can and try and mix it up. Walking has helped me-- I hate it but I do it.
Mary- I thought of you today as I am making a sauce for family that is coming for the weekend and wish I had some Basil! I also wanted to ask you how you are feeling- You went through such a sad time- It takes so long to not feel sad. I hope you are doing better in that area.
Dee- I am so sorry this has been such a bad experience. With your numbers down it does take a bit to rebound and I know the achy feeling you are having. I am hoping the next post has Dee with true blue CHEERS.
Lynne- That was great news on your bone scan. I hope the pet scan gives the results we will pray for. I have my Massachusetts family all visiting this weekend and next weekend as well. They will come in and go out in waves- At least I am not doing the traveling but I am cooking up a storm. Hoping the weather is great this weekend in upstate NY.
Hugs to all,
Carol
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I need help reading my PET scan report although the little I understand it seems good news but I would welcome your opinions. Here's the impression:
IMPRESSION: 1. Interval response to therapy with improved hypermetabolism in multifocal osseous metastatic disease. 2. No evidence of new FDG avid metastatic disease.
3. There are large nonhypermetabolic fluid collections, one within the deep subcutaneous tissues of the lateral right thigh adjacent to right total hip arthroplasty and the other surrounding the femoral component, which are new in the interim. These are likely on the basis of postoperative seromas from right femoral rod replacement. 4. There is patchy groundglass seen throughout the lungs bilaterally with mild patchy hypermetabolism. This is felt to be secondary to edema or inflammation.I understand 1) there's improvement in the bone mets. And no evidence of new mets.
2) there are seromas on my right hip due to hip replacement
3) this is the one I'm not sure I understand: "mild patchy hypermetabolism" means something is seen in both lungs?
I won't see my doctor until next week I want to have any questions answered then but for that I need to know if what I'm reading is correct.
I appreciate it.
Aurora
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Hi - just heard today that I am stage IV - mets to bone. I was initially diagnosed stage 2b in June of 2016 and then it went to stage 3 after lymph node dissection.
Everyone's stories are a tremendous help for me. Just scared right now. I told my husband and my youngest son - my oldest son is on his way over right now (I only have 2 kids).
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Silviah the same thing happened to me initially I was stage two then after some bone scans it got bumped to four. I went through nine months of ugly crying and when I look back on it now I think what a waste of time. Everyone takes what time they need to adjust to the new normal I think I went a little over board. Information is huge at this stage and things aren't as bleak as they seem right now. I was told I had two years to live. One year is up and I feel better than ever and am as active or more so now than before. So keep good people and family close they will be your rock and get rid of the negative ones. Eat well and excerise everyday if you can. We can go for twenty years like this at least, that's my hope anyway. Your life will change but it's not all bad some of the changes are awesome. Get your immune system on board and bobs your uncle. Yes I'm Canadian😉
Wendy
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Aurora I'm always staring at my cat scan results and thinking really couldn't they write some of this in normal English. Yeah on no new mets that's great news I also had a reference of a lung issue but they told me it wasn't cancer just left over damage from pneumonia I had a few years back. They also said it could be just how I breathed at the time of the scan and that I shouldn't worry😊
Most likely it's the same for you. The hardest part is waiting for the doctor to tell you this. I always wonder how much time we sit at home in the grip of fear thinking the worst only to be told that it's all okay two weeks later. All that time wasted in fear. Hate that I'm trying to train myself with meditation and deep breathing excerises to not be afraid. Still working on it
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Wendy, it's all a work in progress, we are all still adjusting to our new normal regardless of how long we've been at it. For example, I'm on my 3rd year since mets dx and just now was the first time I got to see my PET scan on the patient's portal, so it's the first time I didn't have to wait until seeing the doctor. All this time I didn't question the doctor's assessment of the results and even though I read about "scanxiety" I really couldn't tell you I had experienced it until now. Maybe ignorance is blessed. I don't think your time of crying was wasted, it was the time you needed to accept and adjust. Sending you (((hugs))) and keep trying the meditation and deep breathing exercises.
Aurora
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Aurora, my scan also noted ground glass nodules in my lungs. My onc and the doctor I work with both said that these are usually from a past pneumonia or bad or chronic bronchitis. I think that's what the hyper metabolism is referring to, especially since it said secondary to inflammation. Scan results sound great to me
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Thanks girls, you make me feel so humbled by your love.
Hi Silviah hearing those words 'stage IV' do have a tendency to knock the stuffing out of us and of course the fear of our death sets in. Deep breath lovely.......it's not a death sentence for today nor tomorrow nor the next day.........it's possibly not going to happen for years yet but I know you will need time to get your head around it all the same.
We have all had the 'two year' talk but those talks are based on out of date statistics. Since those numbers were compiled things have changed a whole lot.......there are new meds and regimes that can and do extend our lives while making sure we have the best quality of live possible. Try to get through one day at a time, do what you need to do and enjoy every second of every day........very soon you will find your life will return to something more familiar and that fear will dissipate somewhat.
Auroaya, yes you are correct with your reading of the report but the bit about the lungs is just saying that they are seeing what is left of something possibly from a build up of fluid or inflammation. Have you recently had a cold or an allergy? Both of these can leave the impression that is seen so I wouldn't really be too concerned about it. Over all a really great report!
Love n hugs. Chirssy
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I read my scan reports today. I chuckled when I read this in the bone scan. "There is abnormal increased tracer amount in essentially every osseous structure." I guess this would be considered extensive bone mets. It makes me wonder why I can still move. Lol. Most of my bone mets are now sclerotic. Last year they were a mixed bag of lytic and sclerotic. The CAT scan report is a little bit scary, but I am still hoping for the best. I am scheduled to have a PET scan on Monday.
Silviah, Welcome to the bone mets thread. I am sorry that you have reason to be here. As you have already discovered, there are many helpful, caring women and men here. We have all been scared. I know it is hard for you to believe right now, but things will get better. I felt much more in control once I had a treatment plan in place. Lean on us whenever you need to. You can vent, ask questions, make comments, have a pity party, whatever you want to do. We are here for you. ((Hugs)) to you
Lynne
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Sil- I remembered the first time I posted I was hysterical with fear. It has been almost a year for me already, and the support is truly amazing in this group and throughout BCO- Feel free to ask questions, cry, laugh, as we all hold hands in believing that we have a chronic disease that a cure for is just around the corner.
Hugs, Carol
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Carol, from your lips to Gods ears! I also strongly feel that a cure is just around the corner
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Aurora, I have ground glass opacity in my lungs as a result of radiation.
Lynne, Let us know how your PET compares to your CT scan. Sounds like you have some healing going on as well.
Sil, We are all here for you as you start your tx plan and grab a hold of life. As many have said the stats have changed and we are for the most part living longer with new treatment. Just remember that there are lots of options now for you and your MO to talk about.
Tomorrow marks my 7th year with mets. I still can't quite believe it! A friend surprised me with tickets to go see Diana Ross last night to celebrate. Diana was fantastic and her voice was strong. I'll post a fuzzy picture. Mighty painful back today with all the traveling etc but soooooo worth it!
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