Bone Mets Thread
Comments
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Amen to that, Mary!
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Mary - thank you, thank you, thank you!
You are so right - I just was caught off guard to hear an actual number of years twice in one week.
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Kiwicatmom,
Oh, I wish we were stopping in Wellington just so we could meet, however we will be in Auckland, Tauranga, Akaroa and Dunedin before heading on to Australia. I getting very excited because I thought I'd never see that part of the world.
Caryn0 -
Well, when I first met my onc he hoped to treat me with hormonals and said that I could live for many years. He considered that the disease, while not curable, was treatable, and compared it to living with diabetes or HIV, with chemo being the last defence much further down the road. Then, after three months, scans showed progression and he decided to start treatment with taxol. I asked him what my prognosis was now and he said 5 years though he had known people to survive for up to 10 years. So, it would seem to me that as long as the cancer responds to hormonal treatment the longer one can hope to live. I guess that the toxins from chemo that attack the cancer ultimately kill us slowly. Oh it's all so depressing {{sigh}}....
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Caryn what part of Australia are you visiting?
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Thanks all. MarieK - I didn't mean to scare anyone! My radiation oncologist is a bit old school and doesn't keep up with what he refers to as "trends". I met a six year survivor on a flight recently and she looks fantastic and feels pretty good! At any rate, the reason I'm going to seek a second opinion is that my radiation oncologist, while giving me decent treatment, has basically written me off due to his belief system (i.e., I'll only last five years). I do not intend to buy into that belief, and I fully intend to prove him wrong. And I'm known for my determination. My husband keeps repeating the quote that there are lies, damn lies, and statistics, and telling me not to buy into statistics that mean nothing for me as an individual. And he's right.
I had my six month follow up with my orthopedic surgeon today and he said that it looks like the bone may be regenerating a bit in my femur around the pin. He was quite happy with my progress, which was great news.
All the best,
Terre0 -
Hi Latte, that solves that mystery for me! I saw Israel, but also Wellington. If you get back this way, I'll buy you a cuppa!
Terre
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It was an unexpected pleasure to read about KiwiCatMom and Latte being from New Zealand! My husband was from Wellington (Porirua, actually). He passed away a dozen years ago (after a year and a half of marriage) and I miss him terribly. I was able to visit NZ with my family after he passed away. What an incredible country!
As to our expiration dates, my onc has always refused to give me one, because he says it is entirely dependent on my response to the treatments. The averages they give include ALL patients, and I am not ALL patients. As he put it, you could have identical twins with identical cancers, and one would respond to treatment and one would not. (Which is one reason I could never be an oncologist - that would drive me crazy!!) I know we sometimes just want the dr. to tell us the "bottom line: How much time do I have?" but nobody knows. Which, I suppose, is no different from people without cancer!
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Hi Chrissy,
Our ship calls on Hobart (Taste Festival!), Melbourne and ends in Sydney. Other than family visiting, I haven't had a proper vacation in the two years since my dx. To say that I'm excited is an understatement!
Caryn0 -
Caryn, you will find such a difference with all three cities but each beautiful in their own way. I know how excited you must be as I remember what my excitement level was like when I visited the USA in 2011.
I asked where you would be just in case I was close enough to catch up for a coffee but alas I am in South Australia and a long way from where you will be.
On the question of life expectancy I was told by all my docs two years........well, I've proven them all wrong as it is four and a half years and still going strong! I think a lot depends on how well we respond to the treatments and how long they work for us and they bottom line for that one is we are all different and all respond differently.
Just goes to prove how individual we really are.
Love n hugs all. Chrissy0 -
I was given a timeline of 2-5 years with several bone mets in 2006. That info was given to me by an oncoligist who knew I had chosen a different doctor. She had the results of a PET scan she ordered and called me ON THE PHONE to tell me. Never did I ask. When I reached five years, I sent her a letter and told her to never do that to another person. I am now at 7.5 years. No doctor knows how long we have as we all react differently to meds. I was on different hormone meds for several years. Then was on Afinitor for 3 months and had to quit because of what it was doing to my lungs. Next treatment is Xeloda, but my doctor now has me on a complete break from any meds and will have a PET in Nov. My CAT scan a few weeks ago showed that the two they checked out of several mets had not grown in 3 months. She can only say when I ask that it is the biology of my bone mets.
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Wow, thanks SueColo2 for your post. Its encouraging to know. My hope, wish and prayer is to live longer than the statistics too! Its hard for me though to try to prepare everything for end of life while keeping my mind positive that I'll be around for a long, long time. It seems hard for me to plan for the future, or make long-term decisions when I have such a big "unknown" to live with? How do others cope with that?
Thanks
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Thanks everyone for reminding us that statistics are not for individuals! I have never asked my onc because I am scared of what she might say. I prefer to just keep on going without knowing where the finish line is.
Raro, so very sorry to hear about your husband passing away after such a short marriage. I'm glad you managed to get out to see NZ though!
When I was 28 I decided it was silly that tourists I knew kept telling me how amazing the south island is and I had never been there. So I spent 6 weeks traveling round it. (I knew the north island very well, but had never been further south than picton).
Terre, sadly I don't think I will get back to NZ again. I used to go back every 1-2 years to visit family and friends, but since my dx I can barely get out of bed and definitely can't fly. Family and friends are flying to visit me instead now.0 -
Hi Latte, I live in Christchurch. Glad you managed to visit it before the earthquakes!
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Sue, what a jerk that oncologist was! I'm glad you sent her a letter. There are so many instances of people living longer than their oncologists predict. I think, in general, that oncologists are surprised every time they see us. 😉
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Why do they even attempt a prediction?
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Many patients want a prediction. When you were first diagnosed didn't you ask? Even in an indirect way? I certainly did.
And I wouldn't have been happy with "I don't know", even if it is the truth. The answer I got was "we should be able to get you to your 50th birthday in good shape" which was a good enough evasion that it satisfied both of us.
Six months later I realize that it's totally individual and that the docs really don't know. So now I'm no longer interested in the answer.
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Well, I have always been slightly different
After having explained everything to me, in terms of the bone met, my big question was, " What do we do now to fight it?" I'm not naive enough to believe I can keep it at bay indefinitely, but, for me, the end was not near.0 -
I agree exbrnxgrl. I have never asked my mo, but one day she said you have at least 10 to 15 years. That was before my last Pet scan, which showed no cancer in my body. So I wonder does that mean still 10 to 15 years or does that change the outcome.
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The first time I met with my onc (Stage III at the time) I didn't ask about prognosis but at one point he said, "I'm a great doctor but I'm a terrible prophet".
A week after I found out I was Stage IV one of my granddaughters was born. The day she was born I was holding her and praying very hard that I would dance at her wedding. I told this to my onc and said that his job was to make sure I did. He said, "Then learn to dance".
Leah
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Leah, what a great story! My goal used to be to live until my oldest granddaughter is 19, because she has always said she would come live with us when she's 18. She just turned 12. When I was diagnosed stage 4, I thought that goal was out of reach, but maybe not.
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Hello everyone. I was diagnosed stage III at 32 last june and then stage IV in February with mets to T12. Last week my ct showed a compression fracture at T12 and a possible new lesion at L5. I was just wondering if anyone has any advice about compression fractures. Right now my pain is manageable with vicodin I just don't want to do anything to make it worse. I have an almost four year old boy and a 15 month old girl and I'm terrified that this is moving too fast. Right now I'm on Ixempra every three weeks and they've had me on a break from Xeloda but I'll probably be starting that one up again. I have an MRI this Sunday to get a better picture of whats going on. Thank you in advance for all of your advice.
Deyla0 -
I don't know about compression fractures, but I assume one of the important things (hard with little children I know - I have a five year old) is probably not to lift things, and also to avoid sudden movements (those are the things my orthopedic specialist told me to be careful of with spine mets). Is the compression fracture something that can be helped with surgery?
Thinking of you and hoping you get answers soon. (((Hugs)))0 -
Deyla- I don't know about compression fractures but I can empathize with having young children and having to restrict lifting (I had a femur met and partial hip replacement. (Mine are 5 and 2 now...were 3.5 and 7 weeks when initially diagnosed with stage 2). Hang in there... Hopefully some people in here will have advice. This is an extremely helpful and knowledgable group. You can also post a question to Johns Hopkins breast cancer ask an expert site. They won't give specific treatment recs, but they can offer general advice. Best of luck...
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Deyla, I haven't had a compression fx yet, but I'm at an extremely high risk. My T10 is fully engulfed and have spinal mets all the way down. Lifting is a big one to avoid. I'm on a bone strengthener, Xgeva, injection once a month. Was on Zometa, that's once a month IV. Guessing that might be something your onc might want you to have. Have to make sure you have real good dental care while on it. The MRI will tell them the extent of the fx and if there's spinal cord involvement, etc. My guess is they will then decide on the best course to tx according to the results. I've heard compression fx often treated with radiation, but while on radiation can't have the chemo; so maybe they will keep you on the chemo to see if it positively effects the cancer. You can only radiate the spine once, that's it.
Hang in there, I know this stuff is frightening.
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Just to clarify what syrmom said - as far as i know you CAN have rads more than once to your spine, but only once to each specific location. So you can have rads to specific vertebrae now, and if other vertebrae are problematic in the future you can get rads there in future.
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That's right, my RO said there is a way for him to radiation my spine mets again if needed. Unfortunately, they actually grew after radiation and I'm at risk of impinging on the spinal cord.
You beautiful women with young children, I say extra prayers each day for you. Please keep us posted on your MRI Deyla.
Linda
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Well, what I was told (thank you for clarifying, Latte) was you can only radiate the spine once in a specific area (should have been more specific earlier about the specific area, so sorry) because the "spinal cord is unforgiving" if it's done more than once. So, for instance, if you have T1 through T4 radiated, there's still a lot of spine left that CAN be radiated, if needed. I don't what Rangermom's RO is referring to. However, I've heard that cyberknife is sometimes a possibility, but don't know any more than that. As far as I know cyberknife and radiation are two different things, but I don't know any more than that. If the information I was given was incorrect, I apologize. I welcome any new information as I try and keep educated on this.
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He didn't go into detail, just said it was something new. Sorry I don't have details
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Thank you ladies for all the info and kind words. I have the mri in the morning after work. I will keep you posted.
Deyla0
