Bone Mets Thread
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Dianne my tumor marker was normal range but still twice the previous one. After treatment it went right back down to 12. Perhaps it is the rising and falling that says something. Also, to the others, I think this buying of jewelry might be about bringing value into my life and tossing the crap. That's useful information. Thanks.
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I want to thank all of you for your condolences, it means alot. The funeral is tomorrow afternoon so tomorrow will be a long day. Spent some time shopping with my youngest daughter this evening, it was a good distraction for me. I was suppose to leave yesterday for my yearly Black Friday shopping trip to the States but I passed this year. Partly because I felt it may have been too hard on me physically and also because of my friend's passing.
DianneNC, I hope your brother-in-laws treatment kicks merkel cell to the curb! I would love nothing more than to hear his treatment is successful. My prayers are with you.
On the topic of spending that you were all discussing earlier, I no longer deprive myself of anything. If I want it, I buy it. I mean I don't get silly and buy things I do not need but I spent most of my life depriving myself of things always worrying about the future and I will not do that anymore. My favorite thing to do is fine dining, my daughter is a chef at a winery and we just love going to all the wineries and indulging in their tasting menus, I love the experience! I must say we go quite often and it makes me very happy
Hugs to all,
Annie
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Annie, so sorry about your friend. It's close to my heart because of my friend who has stage IV colon cancer & she is not doing well. Good luck tomorrow, it will be a tough day for you.
Happygran, I think that because your friend (relative) is in the UK, it's difficult for us to know what the protocols are there. There is a lot of difference in treatments even within our province as we have different health authorities. My options on Vancouver Island are different than Vancouver. It's not that we don't care, we just don't quite know what to suggest for your friend.
DianneNC, Hoping that your BIL responds to the treatment.
Hope everyone has a painfree weekend! Cheers, Dee
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Happygran, I would concur with GG. I'm in NZ and protocols vary from doctor to doctor. At the end of the day, yes, they probably should have done a scan earlier, but the out come would likely be the same. I had intense hip/leg pain for 8 months before someone finally x-rayed me and my femur was about to shatter. It makes me annoyed as hell; if they had listened and caught it earlier, I might have avoided surgery. However, since they didn't, I had surgery, and life is what it is. Looking backwards and wondering "what if" doesn't change what is, sadly enough. I do hope your friend gets the help she needs. They have social workers and cancer nurses here who are quite helpful. That said, my sister-in-law's partner's mother has Stage IV lung cancer and despite some horrific treatments has managed to keep up her state of blissful denial regarding her prognosis. And it seems to be working - she's still alive 3 years later despite having "weeks to live".
Dune - US recipes don't work well here because the flour and sugar are different. I thought I was just a crap cook (well, I am but..) until I met the Masterchef NZ runner up who explained it all to me. I bought her cookbook (NZ recipes) and they work here! Some of the US recipes work, but a lot of them just flop and//or don't turn out quite right. For example, the sugar here isn't as sweet and it's large grained (if that makes sense). I can use caster sugar, which is a fine grained sugar, and things work better. But the flour is totally different. Was kind of mind-blowing to me. I can buy a fair number of American foods here, so I get my US food fix from time to time.
I was good today. Did spend (waste?) money on antlers for the cats for their Christmas photos. I promise I'll post them! Also bought some plants for the yard. Now I just need to plant them if/when the stinking gale force winds ever stop. They're still predicting snow to 300m. And it's chilly. And windy. The wind has been relentless this spring.
Hugs to all,
Terre
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I so know what you mean its like being on some crazy streak at a craps table
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No snow in spring. Not allowed. I hope you don't get that snow Terre. (The universe doesn't always obey my commands.) Thanks for the info about cooking in NZ. Oh yeah, and I hate, big time hate, wind sometimes. I expect I'd be wearing ear plugs and downing xanax.
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good morning ladies. Hope y'all had a great thanksgiving
Annie so sorry for your loss.
Dianne. - my mo didn't do tumor markers for 12. Years after my first dx. When I was dx with mets to spine, hips , and some ribs mo dud a tumor marker test and it was 73 I think. No said would not have worried about that number even if we had been doing them on my yearly appt. they have went slightly up but scans show no New growth. Last month back down again. My mo said the actual number didn't mean so much it just mattered if if went up we would scan. But we do bone scan and cat scans every 3 months regardless what the tumor markers say.
Gg27. Sorry about your friend.
Happy gran. I agree I see where people have responded to you in the past. I don't know anything about treatment in uk. You might want to check out the caregivers topics. They may be much more help to you. Bco has been a tremendous help to me but I just had to first find the people who are going they what I am and I avoid the topics that don't relate to my situation.
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Good morning all!
We had our first dusting of snow on our little island, none at our end but just 20km (14miles??, not sure) down the road at the south end, they had about 3-4"!!
But it's going to be a beautiful sunny, but chilly day with a high temp of 2c or 35f, so we're taking our little sports car, top down, heater blasting out to the "big city" of Nanaimo. You've gotta live, so we're going to live in style!!
Good weekend everyone! Dee
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GG27,
Here's a good laugh for you. I live in the San Francisco Bay Area. Last night a news anchor mentioned that it was going to be freezing in San Francisco, 54 degrees F! I grew up on the east coast so I thought it was quite funny. Northern Californians don't know from freezing, except for weekend ski trips to Tahoe.
Caryn
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Oh gawd 54???? Wow, I would be giddy! There was a thread on a Victoria board that I was reading last night. They were talking about the extreme cold that the south island would be experiencing. It was going down to, wait for it..... 0c or 32F or maybe even -1c or 30F!!
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I have lived in northern CA for well over 20 years and love it but most folks here do not understand what cold weather really means.
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I lived in San Fran after growing up in Rapid City, South Dakota, then living in Vegas. And I remember people in Marin whining about 90 degrees F being "beyond hot" and 50 being "freezing".
Dune - thanks for the command to the universe! We're only about 20m (60 feet) above sea level, so we don't typically get snow. I have seen it snow at the beach, but not this year (thankfully). It's just been a really windy chilly spring this year - with chilly being about 50 to 60F. Not cold, but not warm with the wind blowing. I shouldn't complain as we had an incredibly mild winter. But we usually get a bit of relief from the wind - at least a day or two without it. This year, it's just wind wind and more wind. It's also been cloudy a lot, so that doesn't help. That said, I am grateful to be living in such a beautiful place.
GG - good on you with the top down! Used to do that in my MGB back in the day and it was fun as fun can be!
Hope your Thanksgiving was good, Patty!
Hugs to all,
Terre
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Annie, I'm so sorry about your friend. You have been uppermost on my mind and in my heart today. Several years ago, when our boys were still in jr. high and high school, I lost my next door neighbor-dear friend to colon cancer -- dx'd out of the blue @ Stage IV. She refused chemo because she feared it and didn't want it to ruin what she rightfully believed would be her last Christmas with her family. She was only 49. I still think of her a lot -- especially during the holiday season she so loved.
So while we're comparing cold stories... I once lived in Steamboat Springs, Colorado for 5 years, and during that time I remember one particularly brutal winter cold spell when temps of -50 were reported by those living right on the Yampa River. I was fortunate to live several miles away on the warmer side of town, at the base of the ski mountain, where it was only -30 those mornings, but definitely too cold to ski! Deanna
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dunesleeper - thank you for the info. If MO still wants another biopsy I will be prepared with a list of questions. I am just not sure about biopsying a lymph node.
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Hi Dee,
DH and I decided the same thing!😆 No sense saving it up for when I'm in too much pain to enjoy it. We splurged on a trip to Punta Cana in October, we're going to a comedy night in Toronto for New Year's Eve, planning an extra week in S Maarten in Feb and now three weeks in Turkey next June.
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Hi Tartie Pants,
I was single when I was diagnosed 12 years ago and have never had kids. I had feelings like yours too. In my case it was called depression and I learned that cancer causes it and it can be treated. It sounds like you're really in the dumps about your diagnosis and future. Don't think for a minute that you can just shake it off, pull up your socks and carry on. Get in to see your family doctor - cancer and other serious illnesses assault our bodies and the emotional side effects of the disease and treatment shouldn't be minimized. Ask for assistance - you deserve to feel energetic and happy. Big hugs from over this way!!
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Thanks Tracey! I am on effexor for depression and to help with hot flashes as well as xanax for anxiety but i think the doeses need to be upped and I also need more talk therapy so I did reach out to my old therapist. He was awesome and he told me the real mental work started after treatment i just didnt listen.
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We had a wonderful day out, top down all day until we got on the ferry at 5pm. It's too cold to sit for 20 minutes with no heater. I forgot to take my camera to get a shot to post here. But we had fun, strange looks from lots of folks, but we don't care what people think!
KCM, We sold our MGB last year to buy a "practical" Honda S2000 sports car!!
Loved our MG, but we wanted to be able to go out in it all year round & the poor old thing just wasn't up to the task.Tracey, Good for you, booking a cruise & all those other treats! That's exactly how we feel, we're going to enjoy ourselves while we can. We've watched too many people who were "always going to...." and never did. I don't want any regrets. Although we did our cross Canada trip last year, we are thinking about going again to see all the places that we missed, and we're planning on doing it in the sports car.
Tartie, I hope you are able to get some help. Having depression isn't something you can cure yourself, I hope you talk to your Dr. This is a great place to come to, but it's only part of the equation.
Deanna, Oh my, -50, I grew up in the interior where it gets really bloody cold & I don't remember it getting that cold. Wow!
Lorlyn, Please let us know how the biopsy (if they can do one) goes. The radiologist said one of my nodes looked a bit suspicious on the last CT, they are going to take another look at it next scan.
Sorry if I missed anyone. Hope Dune is feeling ok & Annie, I hope today wasn't too overwhelming for you. Best to all, Dee
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Hi Dee. I'm doing fine and got out with some ex-co-workers we had a good time. Now that they realize I'm not decrepit our next meet will be Mexican for Steve.
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- Hi Dee. I'm doing fine and got out with some ex-co-workers we had a good time. Now that they realize I'm not decrepit our next meet will be Mexican for Steve
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Good to hear that you're feeling good Dune! Enjoy! Best, Dee
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Hello to all and thank you for your kind words and condolences. Yesterday was extremely hard for me but the service was beautiful and it really was a celebration of her life. She touched so many people with her positivity and zest for life. Even in her final days she was the one comforting all of those around her, a rare gift, keeping everyone smiling and not wanting them to be sad or to cry. She was an incredible human being and the people that showed up to pay their respects were a testament to that, they had to open up another room to seat everyone and close the doors because people were lined up down the street.
Deanna, you're words really touched me yesterday because I'm pretty sure my friend never thought that last Christmas would be her last one. Just feel so sad for her husband and son who will be without her this Christmas.
Well my radiation starts tomorrow. They told me the Cyberknife treatments are 3 hours, I don't understand how it can take that long. I'm so nervous I can't even tell you. And this damn cold that doesn't want to leave me, I hope I don't have to cough or sneeze while I'm laying there cuz I'm pretty sure I have to lay still!
Hugs to all,
Annie
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Good luck with radiation tomorrow, Annie. Hope it is gentle for you!!
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Annie,It will be a long day for you tomorrow but a step in the right direction! Will be thinking of you.
Linda
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Many thanks for those who responded to my post.............
I suppose my question was 'do you really need a biopsy?' or is it safe to assume that it is the same?
I'm sorry if I've upset anyone........that wasn't my intention...........I just wanted some information for my friend/relative.
She's seeing a surgeon (one of 3 in the UK) on Tuesday who will hopefully be able to operate.
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Annie......Here's a hug to bring along with you for your treatment tomorrow. Perhaps the radiologist could give you something to calm and lessen the fear of the unknown. All a normal feeling but I would mention how your "cold symptoms" are bothering you. Blessings. Peg
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Annie, I will be thinking about you and sending you positive vibes for your tx tomorrow. I had no idea cyberknife txs are that long. What time will you be there, so that we can all be there in spirit with you?
happygran, I think that question is really one for your friend/relative's oncologist. Perhaps he can quote you some stats or explain why a biopsy isn't feasible or a good idea in this case. And if you/she are not satisfied, you might encourage her to get a second opinion, if that's as easy to do in the UK as it is here.
Lori, good luck with your PETScan tomorrow! And about the node biopsy, yes, it will be the same stats as your bone mets, and I would think they would take out a "pad" of tissue containing the bad node, the same as when they do an ALND -- not go after the node more closely, which I agree, does sound like it would spill bc cells if it was cut into. But if you have any doubts or fears, I would absolutely discuss them with your doc(s). Perhaps there are other options?
Once again, I hope I don't appear to ignore anyone. We are such a big group, I find it a bit hard once I've started typing to go back and figure out for who else I have any input worth sharing. And I sometimes feel bad not responding to everyone and just want to point out that in those cases, I'm not ignoring posts, but many times don't have any experience or input (yet) on the topic, such as rads for mets.
Hugs to all as we head into a new week ~ Deanna
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Last Tuesday's visit....Well MRI reveals inflammation from radiation...OC concerned about hip seeing ortho Dr...for cosult..and OC doc is bringing my case to Tumor Board to see what other methods of treatment.can be used on me...IV is just keeping cancer stable..OC wants to have NO EVIDENCE OF DISEASE...
Wednesday Eve....Well I'm in my little 5th wheeler...starting on my dishes to take over to my daughter's and son in law's for Thanksgiving...Wow...it makes me feel alive again...can't wait to feast with my family Love to all my PEEPS....!!!! Peace Out!!!!!
Thursday Happy Thanksgiving!!!.....Ok...I'm done with all my side dishes to take over to my daughter's...Now I get to rest for a little ...and then get my groove on...(get dressed up)..hehehe!! let the Festivities begin!! See you soon Rylin & Brody...and Family....HAPPY THANKSGIVING TO ALL...HAVE A AWESOME DAY...I FEEL GOOD TODAY...Thank You God...for allowing me to feel good to share this day with the most important people in my life...My family!!!..
This day has been so amazing for me...To share with ..My FABULOUS family...My life as of today is so amazing...Thank you God!!!
Friday & Saturday, Sunday....Just saying...Thanksgiving was amazing...I looked and felt amazing...Now that's it's over...because of one day of fun...my body...and mind are suffering...I am in so much pain for last 3 days...and so very sad and lonely...Thank God the Packer's game today we won.....Yippee...Is that how this disease has taken my life....It SUCKS!!!!
My Thanksgiving !
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Hello everyone,
Dianne, Linda, Peg and Deanna thank you so much for wishing me well tomorrow, it means so much to me to have support from all of you. Peg I'm just worried I'll have to sneeze or something and I still have so much post nasal drip I'm thinking I may feel the need to cough if I'm laying there so long. I pray I wake up tomorrow morning with clear sinuses.
Deanna my appt is early, I have to be there for 9 a.m. I made sure to get as much done as I could today as far as laundry, cleaning and preparing a few meals for the week. I will be so tired going everyday that I know the rest of this week I won't be able to get much done.
Lori, good luck tomorrow, I'll be thinking of you and sending positive vibes your way!
I hope everyone had a good weekend.
Hugs, Annie
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happygran,
Biopsies are good, if theycan be done. Some areas are not feasible to biopsy. If they can be done, they yield info on hormone receptor status and, of course, confirm that it's a bc met. So, if the areas can be biopsied, great, but it's not always possible.
Hope everyone else has a good week.
Caryn
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