Bone Mets Thread
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cjanet yes I've heard of that book and I follow her on Facebook. Yesterday I was at a seminar put on by inspire health a none profit holistic organization run by doctors here in. Vancouver . They had her book too and went through the various common denominators with people that beat late stage cancer. I think there were nine or so very interesting. I totally believe this to be possible and not fluff. Keep reading we need to fill our lives with positive stuff this will give us strength to keep up the fight
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Wendy, Annie, and Christine, Thanks for the information, I just sent it to my kindle! Before I even read anything I wanted to let you know that when I was diagnosed in Oct I drastically changed my diet. I went Vegan and I shop for as organic as I can. Yoga is next on my list now that pain I have is more SE from drugs rather than mets.
I eat green leafy veg's that I would have never dreamed I would try. i.e.: mustard greens, kale, swiss chard, dandelion- etc. I have to have a ton of beans to get my protein, I do not do soy. I have learned to love hummus grilled sandwiches, pizza with a bean puree, and pasta every way known to man. My glucose was boarder line before my new vegan diet. It is now perfect. I eat a ton of food and have even lost some weight. I have absolutely no processed sugar or anything of the sort. About 6 weeks ago I became very sick with what was either the flu or a bad chest infection. Fever, cough- I was at the end of Ibrance cycle when I became ill. MO had me stop Ibrance for 2-1/2 weeks to recover. During that time I was so weak... I craved a McDonalds fish sandwich. Of all things to eat?? Sent my DH to get me one and devoured it. Strangely enough I didn't want to look up what was in it. After the fact I did. I was happy to learn it was Atlantic Cod (I think) but the roll that makes that fish sandwich so good is that it has high fructose corn syrup in the bun-
Thanks for sharing the book with me, I also joined the FB page--
Carol
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Hi ladies,
First I wanted to send a hug to Mary. I am so sorry you are suffering with grief for your mother. My mom died when I was 23 of lung cancer. I was so heartbroken at the time. I'm much much better nowadays but it's been many years. I still feel anger though on all the things she missed out on, such as meeting my children. I am so glad she wasn't around to see me have breast cancer and metastatic breast cancer. My sister died of a drug overdose in 1998 and my mom died in 2000. I think it was a broken heart that caused her cancer to kill her so quickly. My mom was a heavy smoker so lung cancer wasn't at all surprising to us.
I had left Radical Remission at work so I haven't had a chance to finish reading it. I find I am struggling with increasing positive emotions, one of the nine points. I am not at all happy with my husband and I think leaving him may have a beneficial effect on my mental health. I know that's sad to say, but one of the points was also "trust your instinct" and my instinct is saying to get away from him. He always twists my words and told me I'm toxic. The way I see it right now is this: I asked him over a year ago to get a stable job with health insurance benefits. To date, he has not done that. He continues to do real estate, which does not bring in much of an income plus there's no health insurance. On top of that, he is not emotionally supportive and barely physically supportive. I no longer see any benefit to being married to him. Yes, he's a good father, but what does that have to do with our marriage? I have asked and asked for there simple requests. Today I asked him to get a part time job to supplement the income. He is just not that motivated. That's what is most upsetting. You'd think w this situation, he would fight even harder to work harder and bring in more income. He makes enough to cover the mortgage and that's it. That's no kind of life. If I'm going to struggle financially anyways, what's the point of being married? I just need the strength to MAKE THE RIGHT DECISION FOR ME. I need to make the choice that will extend my life and make me feel HAPPIER. I'd love to take a leave of absence and visit my sister. I've been sacrificing all this time to pay the bills and keep the health insurance, and DH gets to stay home and spend quality time w the kids because "he can't find a job." It really sickens me to no end.
Sorry for the book! Just needed to get that out, and now back to my work!!!
I'll be back!!0 -
Good morning everyone.
Lindalou, Rats! I was hoping your dh's prostate would be 0. Hopefully, they will be when he is retested in 2 months. I also hope for good results from your repeat thyroid scan in 3 months. I know how much anxiety we build up around all those tests and scans, and it is disappointing when we don't get the results we want. At least the changes were small. Do you know how you fractured your thumb? I am glad the splint is helping. We use and move our thumbs all the time, so I imagine that an injury like yours would be quite painful.
Kathryn, The gift from your daughter is very special. I like that quote and will begin to think of it often. It just makes me feel good and empowered to make life better, one day at a time.
Carol, It is interesting to read your story because I was just thinking about my pathology report yesterday. I was thinking about the fact that I already had sclerotic changes showing, and it made me wonder how long my body had been trying to fight those mets. I believe that it reached the point that my immune system could no longer handle it, things got out of control, and cancer started winning the fight. That is when the horrible pain began. Just my own made up theory, of course. So, McDonald's fish sandwich? Interesting choice. My DH has been making some interesting requests since his appetite started coming back, things we never eat like Chinese food and pizza. I think he is hooked on ice cream. I will tell you that he will never again be able to look at a bowl of chicken broth or a cup of jello without wanting to run away. Those were the foods they gave him on his good days in the hospital. On the bad days he just had IVs. I wish I had your willpower and dedication and could drastically change my diet. I have been able to make the modifications that my doctors have suggested, but I am not ready to give up foods I really enjoy.
Deanna, Thank you for posting those links. I am encouraged by the first one. I just hope we see some breakthroughs.
Aurora, It is always good to hear from you. I hope you see great results from your new treatments. You ned to include yourself as one of the amazing women here. You have been through so much, and you are doing well. You are strong, brave, and thoughtful.
Mary, I am sorry you are having a difficult time. It is not easy to lose a parent or any loved one. My Mom has been gone for 6 years, and my Dad for 2. I still think of them every day, and I have to admit that I still talk to them once in a while. You Mom will always be with you, in your heart, in your mind, in your soul. I am sure she is proud of all you have done and continue to do. She obviously taught you about caring and loving people. It sounds like she had a difficult time towards the end of her life with dementia and cancer. In your heart you know that she is now free from that suffering. I will continue to pray for you. Things will get better. What you are feeling and experiencing is normal. (((Hug))).
Cristina, I have not read Radical Remisdion, but I have read excepts from it. It sounds like an interesting book. Let me know what you think. I don't think you will find that it suggests a cure for everyone. I think it suggests ways that might help. Some life changes are very good, Carol's radical dietary change, for example. Regular exercise also helps. Stress is not good for us for many reasons, so finding ways to decrease stress can help.
Sorry, I have written a book here.
I am leaving soon to take DH to Dana Farber for that "What's Next?" conversation. Have a good day.
Lynn
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Lynn, My MO says sclerotic should have a smily face next to it--
My friends dad now has stage 4 to bone prostrate cancer. He was on hormone blockers because his numbers were up a tad before they knew it was even cancerous, like maybe 5 years ago. As time went on he quit taking the meds because of SE (he's 85) To make a long story short, they were vacationing and he got into a golf cart accident and went crashing down a hill. The did an MRI to make sure his back was ok and low and behold the MRI suggested further bone scan recommended. MRI also mentioned sclerotic, or maybe it was cat scan not sure. Turns out that he has mets to bone and being 85 years old chose to do nothing more than the hormone again proving that his increased numbers were the cancer and the hormone meds were working.
My last cat scan said that the lesions in my thoracic spine are showing sclerotic rings... that is the only area that was not radiated so they are slowing healing where the radiation lesions are all healed over now. They are watching me close.. I feel so much better now, and I agree to one thing. STRESS... I truly believe my diet and STRESS worked against me.
What the mind can conceive and believe it will achieve. We all should repeat those words each day.
Carol
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Thanks so much to Christina, Lynn, Lindalou, Carole, and many others who has sent me hugs and kind thoughts. I do appreciate it.
Hi to all you are in my thoughts wishing Patty and Christina healing bodies and hearts.
Mary
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My DH and I have returned from Dana Farber. The oncologist said that my DH is now CURED of stage 3 kidney cancer. He will need scans every 4 to 6 months for two years since recurrence is not uncommon, but no further treatment now. I can't stop smiling. When we got to the elevator, I gave my DH a big kiss. He looked at me and said that he wantsto hear that I am cured some day. I pray for that for all of us.
Lynne
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lynn. Doing a happy dance for you and your dh.
Cristina. My heart aches for you. So many decisions to make sending you a pm
I am hoping to go home tomorrow. Fingers crossed
Hugs to all
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lindalou. Great news about your dh
Deanna interesting articles. Thanks for posting
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Cristina, I am 11 months out from separating from my husband (and we're now divorced as of February). Happy to talk if you ever want to. On a weekly basis I say to myself or find myself saying to someone else how glad I am that I'm not going through this with him.
Patty, good to see you here. Sending healing thoughts.
Lynne, so happy for you and DH. My dad too was treated for Kidney Cancer and is now 3 years out NED.
Hugs to all
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Lynne that's wonderful news about your DH. Amazing!!!!!! So happy for you. Now it's your turn!!!!
Cristina I'm sorry for the added stress of your hubby. Make whatever decision is best for you at this time. You need to de stress your life. You already have so much on your plate!!! I'm sorry!
Mary I know how hard it is to lose your mom. I was 19 when my mom died of BC. It gets better with time. But you'll always have her in your heart.
Patty my fingers are crossed for you too. Hoping they kick you out tomorrow!
Lindalou happy for the good news about your DH
Nite all
Bab
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Oh, Lynne, that's wonderful news! Nothing more beautiful than the word "cured!" But what an ordeal it's been for you both.
Cristina, the thing that struck me most about your post is that you haven't been happy in your marriage since we've known you -- in spite of what sounds like your hubby doing better in real estate than he was initially -- and that just can't make for a happy home for any of the four of you. I'm not sure anyone is right or wrong (just my take on it from afar), and life is seldom perfect for anyone. But as others have said, what's most concerning is the stress aspect of it. Have you considered a trial separation? Maybe you could think more clearly about what's most important to you if you were apart for awhile? Is there anyone you and your kids or he could move in with while you get a clearer perspective on things?
(((Mary))), I'm glad you didn't burn down the house too! I'm sure you must miss your Mom terribly. Please talk to us here as much as you need to. Or PM if you'd rather talk off the boards. I'm also going to PM you my phone number if you ever want to talk.
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This link doesn't work.
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Hi all!
Lynne, what wonderful news. And such a wonderful word "cured" I hope that we can hear that word in our lifetime.
Cristina, hugs, you're going to need them. I have no words of advice for you, but know that we're here for you.
Mary, I'm sorry I that I somehow missed the post about your mom passing or burning down the house? It does get easier (mom) eventually. I lost my mom 8 years ago to alzheimers, though she didn't pass until 3 years ago.
Patty, hope you get out of there tomorrow!
I told Lindalou that I would show her pics of my tulips this year, I hope no one minds. I forgot this bag of bulbs in the shed & discovered them about a month ago & thought I'd throw them in the ground & see what happened. Spring is coming!!
Take care to all of you, cheers, dee
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Dee, The tulips are beautiful. Tulips are one of my favorite flowers. It is unfortunate that the flowers don't last longer, but they are a wonderful welcome to spring. Mine are still a few weeks from flowering. How lucky you are that the bulbs grew and flowered so soon after you planted them. Don't let the deer come and gobble up those flowers.
Patty, I am keeping my fingers crossed hoping that you go home today!
Lynne
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Dee- When I see tulips it reminds me of the beautiful tulips I had when my girls were growing up. One year they picked them all an inch from the tulip flower with very little stem as a gift for mommy.
Lynne, so happy about DH news yesterday. That news is the best high anyone can feel. Congrats!!
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Good morning all,
Nice to wake up and see such nice tulips first thing in the morning.
Lynn - I'm thrilled to read your post! What a sigh of relief for you both.
Cristina - my heart breaks for you. I like Deanna's suggestion of a trial separation. Will be here for you whatever you decide.
Mary - Both my dad and mom passed years ago. It's hard, loosing a parent is like loosing a part of ourselves. It does get better with time. Take the time you need to grieve, it's important. And talk about it as much as you need to. You can pm me anytime.
Patty - I was amazed to read your Mom lived with MBC for 20 years! Hope you're strong enough to head home soon.
Good day and hugs to all.
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Dee- those tulips are simply beautiful. Any photos of flowers or nature brings me peace and joy. The real thing is even better.
Thank you all for the support. I do know a separation would be good but I don't know where to go or where my DH could go. We don't really have the finances to afford a separate place to live right now, but sometimes that has to come second. I am going to try my best to find peace in any way shape or form.
Lynne- so glad to hear the "cure" word for your husband! How thrilling and what a weight off! Now to find all of US a cure, hmmmmm.
Patty- please please be coming home soon. I responded to your pm.
You ladies are amazingly supportive and I so appreciate it.
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I just got off the phone with my nurse with partial results. CT of spine shows small or no changes. Lungs OK, pelvis mets stable and abdominal US results not in yet.
This is not so good news. A non-dislocated fracture appeared on my femur, the one that had a femoral insertion 2 years ago. Nurse could not say if it was a hairline fracture. Can't wait to see doc. Wasn't there in Dec when I had rads for pain relief.
My question: any of you had a femoral fracture after rod insertion, and if yes, what was done?
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newslady, what link doesn't work?
Dee, gorgeous tulips! Your garden photos are always so pretty and inspiring!
Patty, how are you today? Going home, I hope!!! And woohoo to the plans to get to the UofA. Good for you!!!
Sue, I like your suggestion for Cristina. My only followup thought is, might a leave -- especially if they associate it w/her health -- jeopardize her job security? Of course, that would be illegal, but nonetheless, it happens.
Ugh, Linda, I can't believe you now have a fracture! I hope your doc can show you the actual imaging, so that you can see how big or hopefully small it is, where it is, etc. If small enough, maybe just staying off it as much as possible will allow it to heal? I'm so sorry you have to deal with one more worry, but grateful to hear that your spine mets are stable.
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Dee - Just went back and saw the flowers. They are so beautiful!
Lynne- Great news about your husband's report! Wow!
Cristina - If you choose to make this change, there is life on the other side. I've been there. Got through it. My kids turned out great and I liked my (so called) life and myself again. It brought me some peace. That said, it's tough and I wouldn't wish it on anyone. You'll know the best thing for your family.
Oh no Linda!
Wanted to give you all the entire poem from the other day:
Kiss Your Life.
Accept it, just as it is.
Today. Now.
So that those
Moments of happiness
You're waiting for
Don't pass you by.
Hoping everyone feels decent or even better than that this weekend. Enjoy the sunshine if it happens to come to your neighborhood.
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I just posted and it disappeared so I will try again.
Dee, Thank you for the photos of your tulips. So pretty. Love love photos of flowers.
Linda, I've had a non-displaced fracture in my rib but not sure that is the same thing. For me it meant the bone remained aligned. When do you see the doctor and are you in a lot of pain?
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Linda, does your leg hurt at all? I also have the rod insertion. They note with each scan and reference the amount of fluid that is beside the rod.. it seems to have gotten less. I had the rod put in Nov 2015- and I still ache there.
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Linda/Loves/Deanna - the odd thing is I had so much pain after surgery for a long time, then had rads to femur in Dec and since then, very occasional pain. Right now I'm scheduled to see my Onc on 2 May, but nurse will bring it to my Onc's attention next Tuesday, she's on vacation off and on these days but will be there on Tuesday. One of her colleagues reviewed my results and wants my MO to see them asap. Nurse said I could walk on leg since rod is in there, no problem. In fact, this leg hasn't felt this good in a while, ironic isn't it? I remember Ortho telling me bone would never break after surgery?!
Of course my head is spinning and right now I have 2 theories. First, the met progressed, second, it could be an SE of Xgeva/Aredia. There is a risk of femoral fracture after long use of bone stregtheners.
Loves - I never saw anything about fluids on any results. Is that from post-op inflammation?
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Linda, I think you are right they were referring to probably fluid from surgery. I did not break my femur but I was in such pain from the mets I could not walk for long on it. No pain meds helped. We were all set for rads until the RO determined that the cat scan showed the cancer was almost though the cortisol bone and rads would fracture it for sure. Now after rod was inserted it stabilized it so I could walk immediately and was given permission to stand on it without support. The rod stabilization helped the pain immediately. With that being said, I do notice that I have pain there, but this is more like arthritic pain compared to what I experienced before. Doesn't hurt to walk but when I first get up etc it will bother me. You are absolutely correct where xgeva can cause fractures to the femur. I remember reading that.0
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Hi all!
Thanks for the replies about the tulips, I love how they make the garden seem so happy!
Linda, I'm hoping that it's just the xgeva. It's ironic how when we're feeling our best that these problems seem to show up. Yay for the rest!!
Nice poem Kathryn.
Patty, did you get out of the hospital? ;-)
I have a question, in the last few days my lower back (really lower), hips have been so sore, waking me in the night. I sleep for about 4 hours & then I'm in pain the rest of the night. I get up & take tylenol/acetamenaphen combo but it's not doing much. I try going to sleep on the other side or back but the pain wakes me up. I've never been able to get an answer about whether bone mets pain comes & goes? If I say anything to my MO she will just want to change drugs on me, so I need a bit of advice. Your thoughts?
Thanks, cheers, Dee
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Hi all. I am alive and well and 10 pages behind. Have a week off work so am painting the dining room, fostering kittens and avoiding the computer. Will be back soon. Hugs to all
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MO from Dana Farber has me follow what she calls the three week rule. She likes to evaluate after 3 weeks of pain that is persistent. Hope it goes away!!!! Did you do lift or climb stairs etc that you normally do not do?
Edited to add: Try taking liquid Advil with the tylenol every 6 hours around the clock.
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GG27, my wife's bone mets pain used to come and go often for weeks. Can you get a CT done and be sure what it is ?
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Dee, my mets pain comes and goes all the time, even if stable. Hmm, not sure which I prefer, SE or progression. Can't stop bone strengthener because of occasional hypercalcemia.
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