Bone Mets Thread
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Hydranne, WOOHOO for your remission. Here's hoping you see NED soon.
Lynne
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Valerie - hope you're doing well post-injection.
Hydranne - Congrats and Whoo Hoo indeed! Funny how one's perspective changes - happy about arthritis.
Loves - I have changed twice - once with Stage I and once with Stage IV. The Stage IV one I switched because I didn't feel heard and he had me written off and dead before we even started treatment. He told me I would be here three years, tops, and most likely <2. Well, I'll be 3 years post dx in January (but I know it was active in July three years ago because of the pain I had, so I'm past 3 years from that date). And he was not at all aggressive about treating me - after all, I was as good as gone in his eyes. My new MO is da bomb. He's a fighter, he's proactive, and he takes no crap from no one. He thinks I could "easily" have 10 years or more and by then, this will be a manageable disease and I'll probably die of something else. He's much more inconvenient. My original MO is in Wellington, new one is in Palmerston North. I say this because I live about 1/2 way between Wellington and Palmerston North. I work in Wellington and can take the train to get there. Palmerston North is an hour's drive (one way), no public transport to speak of, and it means I miss a half day of work every time I see my MO. But...my life, mental health, and well being are worth a two hour drive and missing some work. So, if I were you, I'd go interview the doctors at the other place, see if they make you feel like you're going to be heard, etc., and if so, switch. Your life is worth an extra hour of travel. That said, it would be hard to give up a 15 minute drive to the doctor!
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I also wanted to let everyone know that I started a vegan diet today with the exception of maybe having some fish or chicken when we go out to dinner etc. I am not going to make my myself anymore crazy then I am. All this studying of what to do... but it looks pretty easy. no refined sugar in this cancer diet is going to be hard. I think I made up my mind to look at sugar as the enemy. Most of my protein will come from beans and I have to be careful of soy- I think I can have like edamame twice a week, but it has to be non gmo etc. I love mung beans and have found pasta that is asian and made from just mung beans and black beans and actually they have a variety of different ones that taste pretty darn good. Full of protein. I had DH boil me up a pot of navy beans last night (never had them ever) and added them to some rice and veg broth.
I have been really down and not thinking as positive as I should be, but today I decided to pull up the big girl pants and start looking at this as NED REMISSION whatever soon. I only have had two doses of Ibrance and I want to start feeling better. I guess I am not one that has patience! I have all of you to lean on and it is so wonderful to read how great everyone is doing !! If anyone else is doing the vegan let me know. Thanks0 -
Loves - my personal "slogan" is - Give me Patience - RIGHT NOW!
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Terre,
I love your slogan! You were so right to kick that first MO to the curb with such a pessimistic attitude. While I think most of want realism, we don't need to feel hopelessness, especially from our doctors. You deserve better and I'm happy you've found it.
Amy
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LoveMaltes I have been doing the vegan thing since being diagnosed. Nothing can scare a girl into action like a cancer diagnosis. I will be on the look out for those noodles. It's hard to find anything to eat besides salad. I am trying to cut out Omega 6 oils as well. Try and find something that doesn't contain canola or sunflower or safflower oils. I spent a good hour in whole foods and nada. I have the issues as well is I work out each day and get very hungry. Made some raw cookies because I love sweets and they are pretty good. Not for din din though. A long time vegan friend of mine said the biggest mistake new vegans make is trying to make the old recipes they are used to just with vegan ingredients never tastes good.
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I use a cane to take the pressure off of my right hip and thigh, where my pain is. Does anyone use a cane to help assist with walking due to bone pain/ muscle pain? If so has it helped? Please tell me your stories. Feel free to pm me.
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Thanks Terre. It appears I've fallen behind again, so I will respond and encourage at the bottom of each page. Anyway, thanks for the link to where you've seen Blondie and the threat of being obnoxious to make me seem better. Very clever plan. I hope I will find posts about you and your amazing new house!
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Three weeks to the move, Dune. Then pictures, I promise!
Rush - I use a cane sometimes, when I know I'm going to be doing a lot of walking - beyond the range of my pain threshold. And it does help. Are you able to get physiotherapy at all? It may help, and they can give you pointers on cane use.
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Rush- I am walking with a cane as well but not doing so great with it.
Wendy- So excited! I got a vegan buddy. I will post the noodles I got after I get the link to where I got them. They are so so so good!!
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Here you go Wendy- http://www.explore-asian.com
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Hi 50sgirl thanks for the encouraging words and advice. I am just getting used to the idea of having bone mets. I've decided to keep my job and work the 10 hours a week for now. I am getting used to the meds sometimes the pain is more than others. I can definitely say that the pain in my hip has decreased. I do feel good overall most of the time.
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KiwiCatMom, I am not in physiotherapy at the moment but I will look into it. I use the cane if I'm going to be walking more than 10 minutes at a time. I'm looking into doing gentle yoga.
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Hello Hydranne. Sorry to hear that you had to go into a walker, but it is great that you came out of it. I also had IBC. I did chemo, surgery,radiation and reconstruction. So far I'm pretty much dependent on the cane. It seems to work for me.
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I finished rads around the middle of August. I had a hairline femur fracture and they put a rod in 6 weeks ago. Every once in a while my hip where I had mets and rads gives me a zing. It feels like it did when I had mets. Is this normal or could mets be back? My scan three weeks ago didn't show anything. TIA rachel
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hi LoveMaltese,
I am also doing vegan. I tried macrobiotic but it's not working for me. Too many grains and I missed juicing and a variety if veg and fruit. I had issues with anemia and had a blood transfusion last week. My nutritionist begged me to eat some organic, grassed beef to get my red blood cells up. I did. I loved it. But now I'm throttling back to vegan with occasional fish. It's challenging for me. I'm not much of a bean lover, but I need the protein so I'm bucking up. If you find any good recipes, please share.
Rachel
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Rachel - it's normal. What meds are you on? The AIs can also cause bone pain that sure feels like mets. I'm almost 3 years out from my rod implant and my hip still grumbles at me from time to time.
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Thank you so much, dear sweet ladies, who sent me the most beautiful and encouraging thoughts this morning--LovesMaltese, Linda, Dee, Ellen, Lynne, Annie, Terre...you should know that every single syllable was embraced. I want to share something with you, because it may be very helpful for those of you who are or will soon be taking Xgeva...my oncology nurse sprayed my arm with something called "Ethyl Chloride" just before the injection (I asked her to write the name down so I could tell you) and guess what? I felt Nothing! Nothing like the last time at all. If your Xgeva shot hurts, or you don't want to do the tummy thing, you can ask for this. I drank one and half water bottles full before the injection, too. Today was my last appointment, after 11 years, at my oncologist's medical center. As of November 9, she will have moved to the new state of the art Mass General Cancer Center at my local hospital. There will soon be a tour for the general public, and I will attend. From what I hear, the new center is glamorous and cutting edge. Even so, I will miss the grassy lawns in front of my oncologist's old office, where people play frisbee on their lunch hours, and where I would sit at one of the picnic benches and knit in the sun. My oncologist said something interesting today--that interpreting a scan was difficult because healing of mets by building bone tissue looks the same as scar tissue formed when mets are active. This was in response to my asking her if it was time to give me a CAT scan because it's almost 3 months since I began Arimidex. Some of you told me you get scans after 3 or 4 months. But, she asked me many questions which revealed that my massive initial pain has practically completely receded, and she mentioned a certain substance the body has (forget what it was) that records the level of mets activity went from over 200 to around 100 and something, and she said that was excellent. (It wasn't tumor markers, because that blood test didn't get back to her in time for today's appointment.) So, she said she could extrapolate from all this info that the Arimidex is working, and that so far I'm doing "excellently"!
x,
Valerie
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LoveMaltes
Thanks I will check it out.😉😉😉
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Valerie, so glad to hear you're doing so well and thanks for the tip on the Xgeva injection as I may be starting it soon too. Could it have been the alkaline phosphotase she was talking about? I think my onc just had the same conversation with me, saying that if this level went up they could tell it was mets activity.
Terre, thanks for the link to the article, very interesting indeed!
Hugs to all, Annie
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Terre, Thank you for the link to the article. I am always happy and encouraged to hear about new findings in research.
Valerie, The information about ethyl chloride is interesting. I wonder why it isn't used more widely, especially for people who have frequent injections. The new state of the art facility sounds great. Was the substance in your blood that has decreased alkaline phosphatase? I ask only because I know my level has decreased significantly and is now 117. My MO told me it is a sign that cancer activity in my bones has decreased. He also told me that it was difficult to differentiate between bone healing and active mets early on. It sounds like you are responding well to your treatment. Woohoo and congratulations. Let's raise our tea cups to Arimidex.
Gotta run. My DH and I are going to two of my grandchildren's last soccer games of the season.
Happy Halloween, everyone
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Val- That is great news! I just wrote down what you said! I have been to Mass General before and I am so happy you have a nice new state of the art place to go to!! I am in the process of new insurance at the first of the year that will allow me to go where I want. It was pricy, but my family is all from Northshore and are relentless with me to get my care where they are. I will eventually be moving there as well, but not for a year or so. I have my faith in Dana Farber as they gave me the second opinion and I am following what they wanted me to do. With that being said, the Onco at Dana doesn't put much thought into Pet Scans for my cancer, but MO home does. Anyone else get an opinion on Pet Scans? I get the shot soon too so I just wrote down the tip you gave us! TY~
Lynne, I cannot wait till I can get up and get to a soccer game! Have fun!!!
Rachel, I will be adding in some protein that is grass fed etc as soon as I feel the need. Especially to see what my levels are. The beans are really working for me the way I have been cooking them. I especially like navy beans in almost anything. I am not a fan of white northern beans and they are the worst for gas. I was afraid I gained some weight but the scale smiled at me this morning!!
Question for all- What exactly does your met pain feel like? In my hip area it never hurts when I am laying down. When I walk it feels like I am trying to walk on a sprained ankle. It isn't zings or like electrical shocks, it feels like I am trying to walk on an inflamed sprained ankle only in the hip area. I wonder if the met in that area has caused me some bursitis? Anyone have that happen? Where the scan described the lesion and you google that area, all that comes up is hip bursitis. Of course, I want to think they got the met wrong there and all it is inflammation from a bursa thing and that is what the pet scan picked up... lol... I love to think it could be something else.
To all my new friends... Have a fun weekend.. and blessing to all...0 -
Rachel - I echo what Terre said. I still have pain once in a while even though surgery was April 2014. Same with AIs. Weather changes seem to have an impact on pain as well.
Terre - thanks for the link.
Valerie - glad all went well. I knew you could do it and Yay for the good news!
Count me in as a cane user.
Happy Halloween all!
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Loves, I can answer your hip question as I have the same thing. In March, 2013 during a bone scan a dx of mets found an 8 cm lesion on my left hip (I cannot recall exactly where) but after 5 rounds of Cytoxen and Taxotere, it had healed and was considered NED as were the others. Almost 1 year ago I started getting pain in my left hip that hurt even while sleeping. Only heavy duty pain meds would relieve the pain but it doesn't help to fix the pain. The pain feels very deep and achy, definitely not sharp nor does it come and go; it's constant. The only exercise that's helped is warm water aerobics at the local Y. I go every day 5 days a week for the full 45 minute class.
Earlier this month an MRI showed sclerotic healing with osteoarthritis. So I guess you could add arthritis to what your pain might be. I often thought of getting a cane but never did. I'm certain it would have been helpful.
Lastly, until I found Advil liquid gels, I couldn't take an anti-inflammatory as they hurt my stomach, even with food. So over the past 8 weeks, I've found a great deal of relief with a combination of exercise, and drugs. Good luck to you - I hope you find some relief, even if it's temporary.
Amy
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Happy Halloween!
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That's me, all rolled into one!
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Me too Ellelou and Amy
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Happy Halloween to the witches! Or as my grandma would say, Witch with a capital B.
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Love it!
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