Bone Mets Thread
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Thanks all. I feel quite welcome here. For the second time this week, my head MRI was cancelled this morning, and it's frustrating. Fifteen years ago I had a coronary stent placed at a local hospital, and when I went for my MRI Monday, I was told they needed to know what kind of stent it was. The hospital has the records on micro-fische (sp.?) and they wouldn't be available for 24-48 hours! What a waste of a perfectly good Ativan, which I'd never had before but gave me my best moments in a while! I was getting ready for my rescheduled MRI today, and I was called and told it was off again because the hospital's micro-fische system was down and wouldn't be repaired for at least 24 hours. This is a major midwest hospital known for its heart care and we can't get this info! Normally it would just be annoying, but you all know how how it is to get these scans and then have to wait for the results. It's more than annoying. But then again, maybe part of this journey is to learn more patience, not always my strong suit. And I love this word journey as we use it here. When I think of a journey, I'm more inclined to imagine a lovely trip somewhere fun and interesting. This is more like a kick to the gut, then being tied to the back of a smelly old truck and dragged down a dirt road for a few miles! Well, at least I didn't waste the other Ativan the doctor had given me. I see him tomorrow to start treatment, so today feels like a day of grace -- no tests or appointments or drugs yet, so I have the day to do whatever I want besides think about cancer. I'm liking that. It's very cold here and many other places today, so stay warm, everyone.
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Hang in there, Sharon! Happy you found this place. Just wanted to comment on the Xgeva and Aromason, as I haven been taking Xgeva injections for about 18 months now. Pretty easy. Best to make sure your getting enough calcium/D. When low, you may feel flu like symptoms for a few days. Otherwise, if calcium and D are good, Xgeva doesn't really give any SE's. I was on Aromason for about 10 months. It can be a powerful drug in keeping your cancer at bay. Be sure to mention what you are feeling to your MO. Don't suffer the SEs in silence. Anti-inflammatories helped me- Celebrex. I also experienced anxiety and a bit of panic when I was diagnosed stage IV. I had never ever had anything like that. THought I was solid, pillar of strength. But this shook me good. I began seeing a psychologist that specializes in oncology. Invaluable. If it gets tough, consider getting help any way you can. I have Ativan for really tough stuff, such as 3 hour MRIs
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Thanks, Romansma, especially for your comments on the Xgeva. The drug warnings make it sound like the SE's are pretty awful, so it's reassuring to know it might not be so bad. I've taken other AI's and had bad SE's, but that was before the current diagnosis. If Aromasin is going to be effective for me, I'll deal with the problems. I do really well with ibuprofen, and I have serious arthritis -- both knees replaced, etc. I'm always amazed at how well ibuprofen still works for me, so I just bought a big new bottle! I know what you mean about feeling solid. I have always been "the strong one", "the rock", and I am totally thrown off that I'm having these little panic attacks. But I've never been given news like this before either, so I cut myself some slack. I'm not into pity parties, but I let myself have my moments and then move on. It's only been a week, so I'm still trying to find my equilibrium. I will not hesitate to see a psychologist if I think I need to. I've done it before and it was so valuable. I have a degree in psychology, and don't have the prejudices some folks have about getting psychological help. I think it's a sign of strength, not weakness.
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Sharon - sounds like you're doing great - only a week into this "journey" and you're pretty level-headed about it all already. I think one's mental state is half the battle.
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Hello everyone. We have the rascally 3 year old here today and I think he must be getting up from his lie down. At least he did lie still for a little while this week.
SyrMom Your quote: "I also find it very difficult to make small talk with others, as I feel so removed from "normal" life. I watch & listen to others living their lives, but feel no part of it." made me feel connected to you. However, this is how I have felt all my life. That is a perfect description of what it feels like to have depression. That's all I remember, except for the occasional moments of intoxication that fixed it.
Shutterbug I often fear feeling too good because it seems to be followed by a crash. I had a really great time at Berkeley Springs, and today I was crying in Panera's because I might not see angels. A good friend of mine told me her father saw angels in the room when he was dying, and he molested her through her young life. I do feel like I need to cry once in a while though. Just not at Panera's for pete's sake!
Romansma retail therapy rocks! 3 hour MRIs! OMG What the bloody you know what!!!!! I'd need more than ativan. I'd need complete sedation! LOL
Sharon. Welcome! Maybe you won't have side effects or at least any that are troublesome. I have none that I know of from Xgeva. I take anastrazole and found that possibly it kept me from sleeping so I take it in the morning. No problem. I take it with calcium. Those 2 pills are in a cup together for me to take each morning. I have been supplementing with vitamin D a long time, so I know I am good there.
Terrestrial Terre, Momallthetime, Linda, Dee, Caryn, annieoakley, PattyPeppermint, Music Lover, and whoever else I missed. TTYL
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Hi Ladies, for those who asked (I'm not on here every day and this thread moves fast), my Doc wants to keep me on the Taxol/Xeloda combo for 6 mos total and scan again. I'm starting the naturopath IV's from the natureworksbest place that I linked in an earlier post. I also work with a nutritionist and do a lot of alternative therapies as well. I'm doing all I can and then some. It really is a game of cat and mouse with the trickster (cancer). And then wait and see. I also "blog" at www.caringbridge.org under the same name, sky lotus, in much more detail, incl. pics of scans for the curious. ;-
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Thanks for the info, Sky. I'll definitely look up your blog.
It's my day to be depressed. My dear friend, Bob Curiale, passed away following a fall and traumatic head injury. This is especially hard for me because Bob is someone I've always referenced in my "hanging on to hope" mental place. Bob worked for me in the early 1990s. He had AIDS. Not HIV positive, full-on AIDS. In 1995, he checked into hospice with "weeks" to live. He was approached about a clinical trial and agreed to it. He became one of the early AIDS patients to use protease inhibitors to treat the disease. In 2007, he was best man at my wedding. So Bob has always been a hero to me - he was willing to help advance science (he was a scientist) and it helped him along with many others. Initially, he was doing 2 IVs and about 30 pills a day. They kept tweaking his meds and basically experimenting on him and he was down to just a few pills a day and doing very well and teaching high school chemistry. He also had an amazing sense of humour and after my family died, Bob always made sure I had somewhere to go for the holidays and didn't just sit home and mope. He helped me learn to laugh and love again and to overcome a lot of fear and anger. He was there for me when I had Stage I cancer as well.
I'm not posting this to get sympathy, but I just needed to write about it someplace where maybe others would understand. In the end, he didn't die of AIDS or anything related to AIDS, just from a freak accident. So that keeps me hanging on to hope that we'll have a near-cure (or a cure even) like Bob did.
Hugs to all.
Terre
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Terre - what an amazing story, truly an inspiration for me. I'm so sorry for your loss - my condolences to you and his family and friends. We just never know what the future holds for us. Big virtual hugs to you.Linda
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My apologies for the intrusion on your thread, but KiwiCatMom, I just read your post about your friend Bob. Truly an inspiration. Please accept my condolences for the loss of such a good man and friend. I am so sorry but also so happy to know you had such a special friend in your life. How lucky you were to have such a great man as a friend.
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Thanks Leggo and Linda. Bob was really funny and made me laugh on days when I didn't want to be happy. I did give back to him though.
He lived in Long Beach and I went to visit. We had a late lunch at a seafood place on the beach (it was winter) and the sun was starting to go down. I had an incredibly good martini (Bob was driving) and some amazing oysters. Bob told me that every time he needed to smile, he pictured the pure bliss and joy on my face while slurping down oysters and good vodka, watching the sun go down. He once invited me to Thanksgiving dinner, informing me that it would be me and 15 gay guys. I hope this little story doesn't offend anyone....Bob and I had this back and forth banter. Anyway, I said I'd come if he promised not to call me a fag hag (I was being a smart ass per usual). He cracked up and said, "well, if the ruby slippers fit honey, wear them!" I wore red shoes to the dinner. For years after, he routinely asked me about my "ruby slippers" and if they still fit. Always gave us both a big laugh.
After the last of my family died (it occurred over six weeks, so I was a mess!), Bob "kidnapped" me and took me to a wine and chocolate tasting event. He told me he knew I couldn't remain depressed forever and it was time to "snap out of the pity party". He also said he knew I couldn't be depressed if I had good wine and chocolate. Now, that's a friend!.
Another friend has also been an inspiration with regard to cancer. In the 1980s, my mom's friend Butch was diagnosed with leukemia. He was in his late 30s and had "weeks" to live. He got into a trial at MD Anderson for a "new cancer cure" drug - Interferon. It was pretty awful treatment at the time, and Interferon turned out not to be the wonder drug everyone thought it was at the time. However, it does work on hairy cell leukemia, which is what Butch had. He's still alive and well (and retired) today, enjoying his grandchildren, golf, and being involved in state politics. So...there is hope. And that's what I hang on to every day.
Hugs to all, and I hope my Bob stories haven't offended anyone.
Terre
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PS - Leggo - Don't apologise for "intruding" - all Stage IV people are welcome here, bone mets or not!
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Terre, You sound blessed to have Bob as your friend and thank you for the encouraging stories.
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Terre, I am so sorry that you've lost such an amazing friend. I'm gay and watched a lot of male friends die of AIDS over the years, so it is inspiring to know your friend did so well for so long. And the irony of his death is profound. Maybe some of us will die prematurely, but no one ever knows . These inspiring stories give us all hope that this diagnosis doesn't mean something else won't happen along the way that changes everything. I can't imagine anyone being offended by your stories. I think they're great! Cancer is a great leveler. We're all in the same boat with no room for judgments about how anyone else lives or loves. The point is to live and to love. There is no other reason to be alive.
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Thanks Sharon.
And on the good news front and same theme: http://finance.yahoo.com/news/analysts-pfizers-typ...
Fast track meds for Stage IV BC! My MO has been tracking this and says he thinks it would be perfect for me. Fingers crossed.
Hugs to all,
Terre
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Bob sounds like a wonderful and inspirational friend, Terre. I'm so sorry for your loss.
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Thanks, Shutterbug.
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What a lovely friend you had Terre, sorry for your loss! I keep hoping that the same type of trial happens for all of us stage IV's.
Your friend reminds of a story from years ago. I worked with many gay men in my office, this long before is was as accepted as it is now. Two of them were getting "married" One of the churches in Vancouver "married" anyone who wanted a non binding union. Anyway, I was the only woman at this wedding which was "way over the top" I wore a fabulous red dress with red high heels & dripping with rhinestones. Although none of the boys were interested in me, they all wore my rhinestone jewellery that night.
Keep your wonderful memories of Bob, he wouldn't want it any other way!! Raise a glass of wine & a piece of chocolate to your friend & keep his memory close to your heart. Cheers, Dee
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Terre - VERY good article on Pfizer med! Yes, let's keep our fingers crossed. There is hope.Linda
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Kiwi, The wine and chocolate sound like a wonderful way to remember your friend and thank you for posting that article.
I always get confused on palbociclib, it falls into the class of cdk-4 cdk-6 drugs, is that correct? Does Ibrance also?
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Great article on new drug! It's about time they started to put some effort into treating advanced breast cancer. It seems all the efforts are about BC awareness, as if getting a mammogram is the whole answer. I never liked pink much, and October really annoys me!
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Thanks Dee. That does sound fabulous. Wish I had been there too!
As I mentioned, Bob was our best man and as such, had temporary possession of my wedding rings. When Elvis (yes...we had the Vegas Elvis wedding) asked for the ring, Bob started to hand it to Mike (my hubby) and then said, "it's really pretty, maybe I'll just keep it!" Musiclover - I think Ibrance is the brand name for palociclib and that yes they are that class of drugs. This might make you laugh a bit - I originally typo'd "musicliver" instead of "musiclover." Reminded me of the little old lady that goes to her minister and asks if he will ask the congregation to pray for her kidneys. He says that he can, but that he finds this a strange request. And she says, "I don't know why you think it's strange when you ask us to pray for those loose livers every Sunday!"
Hugs to all,
Terre
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Kiwi, You are too funny. You can call me anything just don't call me late to dinner (or sh&% head, Steve Martin cracks me up too.)
(I almost always find a typo in my posts...)
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Great posts today! Thanks for the laughs, I needed them, it's a grey, foggy day here on the west coast. Cheers, Dee
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Terre, my condolences on the loss of your friend. His passing will leave a gap in your life, but it sounds like he'd say, "Fill the gap with chocolate and wine".
Leah
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Thanks Leah!
Glad your day is brighter, Dee.
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Sharon, welcome, as everyone said, this is a great place.
Shutterbug - well said. I am trying to live more in the moment also and do more things that make me happy. No doubt we all have to grieve for the life we thought we would have and no longer have. personally, I think some denial every day is needed to deal with this disease. As another women noted on another thread, if I knew I was going to live this long (3.5 years), I wouldn't have spent so much time worrying. Don't let the disease rob you of your life before it robs you of your life.
Romansma - love the shades!
Terre - Sorry on the loss of your good friend. Wonderful memories to remember him by though and funny stories!
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"Don't let the disease rob you of your life before it robs you of your life."
Well said, readingmama! This is how I stay happy and enjoy life even in the face of bc
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Hi Sharon, A thought re your heart stent. Medical Records should have a detailed record of the procedure with stent placement to include mfg name and Id numbers. They naturally will need all logistic info ...date, name of surgeon plus your pt Id stuff and hospital...gosh another "journey. BTW many yrs ago we lived in Wauwatosa WI. If I remember there was a Bayside.....our winter here reminds me of those wicked cold Jans In WI with lots of days -29 degrees. I had "cabin" fever until March. Good results with the MRI...will be thinking about you.
Tere , Thanks for sharing your good friend, Bob with us. a very special guy. I am so sorry for your loss...his bright-light will always be there. Peggy
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Hello everyone,
I am a little behind and had alot of reading to catch up on. I was just spending the day with a friend and we had a great visit. Lots of wine and a little chocolate but a lot of good laughs. It's way past my bed time.
Terre, so sorry for your loss, sounds like Bob was a wonderful man to have as a friend and I'm sure you will miss him but it sounds like you will have great memories. I can feel the energy of your friendship with him through your writing, it seems you both brought alot to each other's lives.
Romansma, Shutterbug73, Dunesleeper, Linda, MusicLover, Dee, Sharon, Leah, Leggo, ReadingMama, Caryn, Skylotus and everyone on this forum, thinking of you all and wishing you the best.
Tomorrow is my 5th infusion. I have an early appt. blood work too and seeing my MO. Thinking I will be getting my bone scan results. Feeling a little nervous but kept myself distracted all day. Please say a prayer for me.
I need to get some sleep. Morning will be here before I know it. The weather has been blustery here, snowy, windy and -25 with the windchill!!!
Hugs to all, Annie
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