Bone Mets Thread
Comments
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And I'd echo what Annie said. All of you amaze me on a daily basis and I am so blessed to be part of this supportive wonderful group. I don't know that I could have made it this far without you all.
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I will be forever grateful for the support, courage, knowledge and genuine concern that I get from all of you wonderful women from every part of this planet. You're the best! Hugs to all. Love Chelle.
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i agree. Love the sisterhood and support. Don't see how I could handle this without y'all. And yes , deanna I think you are the most supportive thanks to all
Hugs
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Of course I'm behind again. Thanks for the pictures of the kittens, Terre, and for the work you do to save them. Patty, I can't believe you are back in the hospital, and it pains me to imagine the suffering you are experiencing. Annie, indeed I was an acupuncturist, and some of what I'm hearing about your acupuncturist does not sound too cool! Wendy, I got a surprise from you today. Thank you. It's an excellent idea!
Well, I'm getting some platelets and the benadryl is kicking in, so I will lay back and let it do it's thing.
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Deanna - I so agree with you! The love, support and compassion we get here is absolutely priceless. A great bunch of resilient, caring women here.
rnmparky - Now I'm pretty sure I misspelled your name but can't go back to check. Darn on that progression. I don't have answers but just want to send hugs and wish you the very best on your next tx.
Dune - let it do its thing and rest well.
Patty - hang in there, just visualize a virtual visit from all of us!
This afternoon is CT scan and tomorrow a bone scan. Results on 21 Dec when I see my Onc. Yes, I know 3 weeks! But it's OK, bad news can wait these days, if any of course. In addition to all your support, I'm lucky to have good friends who live nearby and a loving sister. They are all keeping me on my toes!
Good day to all!
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Linda good luck with your scans!! And Deanna what you wrote was gospel. Love all of you.
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linda e. - yes, a virtual visit sounds great. The rooms here are sure big enough to hold us. We could easily fit 10 beds in here with room to still walk around . hope your ct and bone scan return with some positive news. Do you have to wait 3 weeks for results or thats just your choice ? I got a ct scan last night and am already bugging them for results.
Dune - are you getting platelet at the oncology office or the hospital? How long does that take? Is your mom with you? Hope you two are getting along better.
Hugs all around.
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I agree I can't do it without you ladies and I am so grateful for your feedback and support. I saw my PA yesterday, not even my oncologist, but she agreed to put me back on Celexa, which I had run out of. I will pick it up and start again today. I was taking some Lexapro I had found in the house when I ran out of Celexa a few weeks back but I don't think it's the same thing.
DH is not opposed to moving down South. He will be looking for job opportunities there as well as in NJ. So we'll see what happens. I would be excited to live near my one sister and at least be able to drive 8 hours to see the second sister. I just want to be able to run over at night if need be, you know, if I'm having a bad day, and I can't do that!!
I am having another bad day, emotionally and physically, pain filled, but coming here, just a little, does help boost me even for a few minutes.
Later tonight I am doing an interview for a research study. I think I get paid for it as well. Anyways, that is at 9 pm tonight.
LindaE, good luck w the scan even if it's not for 3 weeks, you are right, bad news can wait! Who needs it!
Dune-I hope those platelets and the benadryl help you in feeling better.
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Good morning ladies,
Time for some laughter here...we went to visit a daughter in Colorado over Thanksgiving...great time with the family but a bit of a disaster with cancelled flights, 15 hour drives each way, icy roads and an unplanned trip to the ER due to a headache that my onc may want to check for brain mets...(I'm ignoring this until after the holidays) so...
When we arrived we were talking about how this old hippie could now, after many many years on the straight and narrow, legally use marijuana. Someone pipes up and says "Gee...did you know we can go get some today because it's Colorado!"
I had been thinking about signing up in my home state, but hate the thought of fingerprints, photo IDs and the state charging excessive registration fees and prices. Plus, the application process adds a little more indignity to life. I'm not a criminal. I just wanted to see if there was something that could take the edge off continual back and hip pain without narcotic side effects or stomach issues from too many OTC drugs.
After some teasing, laughter and further discussion, my two daughters take me to the local dispensary. (At the store my eldest is clearly uncomfortable...a big rule follower her whole life. The youngest is getting a kick out of the whole thing.)
Times have changed. Bright lights. Cute marijuana tee shirts on the staff. Display shelves where you can see lotions, edibles, equipment plus blackboards promoting the "Specials". The lingo has changed, too. ("Spirit in the Sky" was still coming out of the speakers so some things remain the same.) Old Hippie was trying to figure it out while the daughters stood together, out of the way, to observe.
Time to place my order with a young man holding an iPad..."one small container of topical cream please, and a joint." I say in my grandmotherly voice." He tells me the price and my eyes bug out. (Of course cigarettes were 36 cents a pack back in the day.) As I walk to the register my daughters say a young man walked past them and said, "I wish my Mom was that cool."
Brown paper bag in hand, we leave and I'm thinking maybe the funny things will help us all get through this. BTW - the lotion is very helpful with no associated "high." Haven't tried the other...saving it for a really really bad day. I did not get a photo in front of the store for my "Cancer" journal, but the memory makes me smile every time. (We went to a knitting shop next...such wild ladies.)
Having my children support me in so many ways while they are struggling with the DX themselves is an unexpected gift. The role reversal makes me sad, but I so appreciate their help.
Oh yeah...they still don't want to stick their hand in the raw Thanksgiving turkey so I get to keep that job until further notice :-) Looks like I need to stick around!
The sun is shining and life is good today. Thank you ladies! Your posts are an enormous encouragement!
Iwrite
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I agree I couldn't get through the days without the words of encouragement and general good-will from all of you, whether you are suffering from pain, side-effects or stable with your current bc status.
Here's a new one for me. My RO insists I get a handicapped tag for my car, especially since winter has hit Minnesota full on with snow and ice. He doesn't want me slipping on ice and breaking something, especially the areas being radiated. So not only do I feel 90, I'll look it too. BC really messes with our dignity doesn't it? Please don't get me wrong, I'm not being vane, it's just discouraging to have normalcy taken away bit by bit.
Amy
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Oh Amy.... I just left my pcp's office with an application to go get the handicapped tag! Icy here today too. Went to the DMV and luckily the lady helping me was fun and got me through. I got in the car and teared up. I didn't think it would hit me, so I know what you mean about the tag. And what did I do but immediately hid it in the glove compartment! My doc has been pushing me too so ok....I did it.
Lynne, Do you have any results from your husband's testing?
Iwrite, I live in WI but MN,IL, and Michigan all have medical marijuana. I need a road trip! Loved your story.0 -
I read back a little more. And though late, I wanted to offer my condolences to Dee for the loss of her friend and to LindaE for the loss of her dog. To both of you, I am so sorry for your losses and am sending virtual hugs, even if a bit late.
I know i go on about myself bc I'm not doing well, but I still DO think about all of you!
Amy and Lindalou((hugs)). I know it feels not normal to have the plates, but your docs just want you to be safe. I looked it up but I don't think my doc will give it to me yet, as I'm not walking w a cane yet.
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Iwrite- I LOVED your story... thanks for sharing!
CJanet- A nice move to the south could be just what you need, I wish I could go where it is warm! It might change things all around for you-
AmyQ- I have the handicap application too. Need to get it- I am ashamed that in my younger days I would call it a "Cripple Pass" - when I would have my parents with me I would say give me your cripple pass so I can hang it up so you can get out here... Not so funny anymore!!
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Amy I would love to have a handicap pass for my car doesn't matter nobody will know why you have it. I'm all for safer parking and shorter distances to walk carrying stuff. Had one for a while when I was pregnant with my twins was awesome.
Iwrite I have been using the medical marajuana products for six months now. I manage to stay fairly level headed meaning not high (at least it's my choice). They have tons of products that help with pain management. For me it helps tremendously with anxiety and depression and with my knee pain. Also I've gained five pounds and couldn't be happier food tastes just better. Not for everyone I suppose but heck if it works...
This is such an important site for me as you woman have all become. We enjoy the ups with each other and help with the lows. I swear when I was first dx I was like so many others lost. I remember I was so fearfull and panicky and sad. I don't remember how I stumbled upon this thread but I am so glad I did. This is for me an example of how woman should always treat each other but sadly don't. We are a global sisterhood and we pay it forward everyday. Love all you guys. I wish all of you everyone a beautiful day.
Wendy
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Oh, Amy, I totally get that. But as I told someone else here recently (maybe in a PM -- if not, forgive me for the repetition)... but my UCLA onc who is always extremely upbeat and positive turned very serious when we were talking about renewing normal activities after my hip replacement and I asked about skiing. That was the one activity she asked me not to do -- because (in her words) -- "At this point, a fall could kill you." That really got my attention, and I and my hubby have never forgotten it -- the image that perhaps another fracture would not turn out nearly as well as my pathological fractures and surgery did. So don't grieve losing that part of your normalcy. Be grateful your onc is on top of this, because no doubt he's seen some bad outcomes with your MN winters. And if there's no ice, you don't have to use it.
Cristina, I think it's wonderful that you're thinking about and maybe pursuing a move to be closer to your sisters. The one concern I would have is your medical insurance. What will you do if you leave the coverage you currently have and have to wait to get on a new employer's policy? I'm sure it can all be figured out, but in our situation, it certainly needs to be a top priority.
Iwrite, thanks for the laughs. You write so well, and it's a great story! And here's hoping and praying the headache was just travel stress, precipitated by the change in altitude. (I lived in Colorado for many years, and headaches are very common when you're not use to the altitude. I get them now when we go back.)
Happy December, everyone! Deanna
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Iwrite - thanks for sharing and giving me a good laugh.
I think it's yet another little grieving process to have the handicapped tag but we can't take chances. A fall happens so quickly. I dread winter with icy patches and freezing rain is in the forecast this afternoon. I even have melting salt in the car with me should I need it.
Patty - no it's not my choice, it usually takes a good 2 weeks to have results around here. Good luck with your results and I pray you get good news.
Thank you Cristina. I hope your wishes can materialize.
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Good morning all!
Linda, hoping for good results from your CT & bone scan (though waiting 3 weeks sucks!) Patty, hoping you get out of the hospital soon.
Cristina, glad to see you here, I hope life is getting a bit better for you. Perhaps a move is just the ticket.
I am so grateful for this thread, I don't know how I would manage otherwise. Especially now that Susan is gone, I feel like I have no one to bounce things off of. Don't get me wrong, DH is a rock, but I don't like to be talking about this or that & get him worried. I can come here, someone has usually had the same concern that I'm having & I can get an answer.
Speaking of Susan, her funeral is on Saturday & I just won't be up to traveling over to Vancouver for it after having my infusion on Friday. I hope her family understands, but I don't know that they will. Her ex-husband says he understands, but I doubt he'll explain it to her siblings.
I'm still trying to get the allergic reaction dealt with. My PCP wrote a new prescription for the original brand of anastrozole, but the BC Cancer pharmacy is unable to get that brand, so I'm basically back to square one again. It's my mission this week to try to get it straightened out.
Take care everyone. Love you all!! cheers, Dee
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Ladies, I have had a handicapped tag from the beginning and it never snows in So Florida! I use it when I can't find a spot near to where I am going. At the beginning, I used the tag when we were out with my son. He got so angry with me, but when I told him why I just used it, a look on his .face finally understood my condition.
I love this site too, no one else is able to understand the sadness and pain and fear we live with everyday. Like I said before, I'm going as natural as possible. I wish I could pot easily as walking into a store instead of making big Pharma rich.
Good luck with scans, tests, pain, moves etc, etc, etc. so many of you are wishing for a normal life. Seems pretty normal to me! Myra.
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cjanet, I don't use a cane or any walking aid - he did it for prevention from falling on ice or snow. He insisted I take it, which I did and will at some point probably submit to DMV, it's just going to take some getting used to. I guess he wouldn't look to kindly on me horseback riding right now.
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Hi everyone. Welcome to December. we haven't yet had any snowstorms here, but I have read about bad weather in other areas. Everyone stay safe and warm and use those handicapped plates when you need them. They are just a form of preventative treatment and will keep us from further injury.
Lindalou, Thank you for asking about my DH. I hesitate to talk about it since it really isn't relevant to our mbc or bone mets. I don't like to bring people down with my issues. The news wasn't good. It looks like he probably has stage 3 kidney cancer. It has spread to two renal veins and he has a tumor thrombus in his inferior vena cava. (PCP said it was blood clot rather than tumor thrombus but MRI says tumor thrombus). Conventional surgery cannot be done due to fact DH has horseshoe kidney. PCP said it is very complicated case and recommended two specialists, one at Leahy Clinic and one at Brigham & Women's/Dana Farber. We will meet with one on 12/10 and the other on 12/14. You all know the feeling, we want to have a treatment plan in place. I am trying to stay strong for DH. He has been my rock for the past 6 months, and now it is my turn to support him. There is some good news. It has not spread to other organs, he feels perfectly healthy, and all his blood tests are normal.
Patty, I am sorry you are back in the hospital. I hope they get to the root of your problem once and for all and you start to feel better soon.
Cristina, I am glad you had some time with your sisters. I hope all the pieces fall into place, and you can move closer to them.
Dee, I think everyone will understand why you cannot attend Susan's funeral. They know that your heart will be there. They should all know how cancer impacts each of us, and there are times we cannot do what we really want to do or travel to where we want to be. You were a good friend to Susan when it counted, when she was alive. That is what really matters.
I write - Your story made me smile. I can't imagine any of my adult sons entertaining the thought of taking what they think of as their old, up-tight, straight-laced mother to buy marijuana. Oh my goodness, I am picturing the looks that would appear on their faces. I can't help laughing.
Oops, my grandson wants me to quiz him on state capitals. Hi to everyone.
Lynne
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Lynn - so sorry to hear about your dh. Please don't hesitate to talk about it. We want to support you in all ways. Is your grandson in 7th grade ? My ds1 is and we've been studying states and capitals forva big test tomorrow. I have been quizing him over the phone. Dh has no patience for homework snd just ends up frustrating both of them. Funny how many I had forgotten.
Dee - I too missed the death of your friend. My condolences.
Amy & lundalou. - I don't use a cane but mo insisted I get a handicap tag last year. I was embarrassed to use it. I am 45 and people look at me like iam crazy when they see me get out after parking in a handicap spot ( well at least I feel like they do ). I finally said who gives a rip what people think. Either I use the tag and get to go some without being in bed in pain for 2 days or I stay home and miss out on my families life. No shame in it.
Dune. - hope you are home and feeling better
Cristina - where at in the south ? Cold makes my bones hurt even more so yes to warmer weather. We also don't have family close by. If I could move closer to my sis I would do it in s heartbeat. But dh is self-employed and too scared to move and start a new business fresh in this economy. Sorry you are having such a hard day. Hugs.
Mo gave me the results of my ct from last night : STABLE. !!! Even a few tumors have shrunk. Doing a happy dance.
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Patty I am happy dancing with you. Walker and all
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Lynn we are here for you no matter what. Glad he is going to the best for more opinions. Hugs.
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Hello!
I received my second opinions and despite having had the same oncologist for the past 8 years I've decided to switch. My oncologist wanted me to go on chemo right off the bat while the other two oncs that I met with want to put me on hormone therapy. The regiment that they are both suggesting is Zoladex(ovarian suppression), letrozole and ibrance. Any advice, experience or tips with this regiment?
Is anyone on this thread currently on a clinical trial?
Love to all,
Karen
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Hello to all,
I've gotten a little behind but trying to catch up. Lynne, so sorry to here about dh but that is good news there is no spread to organs. We are here to support you in any way you need.
Iwrite, I really loved your story, thanks for sharing it!
AmyQ, after having MS for 16 years and not getting a handicap permit I finally did it when I was diagnosed with MBC. An elderly friend of mine encouraged me to do it because she said even if you only need it once and it saves you it's worth it. I'm so glad I listened to her! Especially after the horrible winter we had last year.
Linda, sending positive thoughts for good results on your bone and ct scan.
Patty, what can I say, doing a big happy dance for you!!! Woo hoo, so happy for your good news!
Hugs to all, Annie
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Patty so so happy for your wonderful news. Is the other stuff stabilized? I came across a newish antibiotic Xifaxam that was prescribed to someone I know, he had rads years ago and now his BM's are all messed up, doc says it's from the rads back when, so he put him on this tx, it goes straight to the intestines.
Deanna - you wrote so beautiful, we all agree.
Lynne so sorry you are going thru such hardship. I just read a book The cost of Hope, by Amanda Bennett, about her hubby getting kidney cancer, how it was misdiagnosed at first, he was treated at Cleveland Clinic, was an interesting and learning read. You are so good, following up e/t right away. Take care
Lwrite - oh that was funny. wonderful
Amy so sorry you have to face this. But for sure safety first, my mom was 95 she used to say that canes were for old ppl, she fought us all, she would only use an umbrella, rain or shine. But she almost always had someone right by her side. So we humored her, and preayed!
Lindalou, the road trip is great! yeah.
Karen it's good that you feel comfortable with your decision. Good luck
Dee - what with the Insurances, they just wanna kill everyone. It's so so frustrating. On top of it all you have to speak to these ppl that have no idea of where you are at. What are they gonna say, yes ma'm but... WHAT!!!!! my heart is with you.
Linda agh, can't believe they put ppl such anxiety. Sorry. I am holding your hand.
Cristina - like everyone else here, it would be really great if you could pull this off. Your sisters are a source of comfort for you, and that is what you need.
TM's did NOT go lower! Spoke to PA she says they gonna just continue. Left msg for Onco, i just need to hear it from him, that he has seen this situation before. I read on an old thread, that TM's could be high because of dead cells also? Hmm, that is interesting. CEA, Ca27.29, CA15.3 did not budge. The tingling is from carboplatin, so she will grin and bare it.
Annie how r u feeling?
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The overwhelming support here is nice. I feel bad I haven't been able to connect with you all yet and hope your MBC isnt taking too much of a toll.
Elle lou, family is definitely key. I'm happy to hear you aren't in pain and enjoying life.
Hydranne, great advice. I'm glad you are out of the,Walker now and I don't think my mom would be opposed to one at 57. She's trying so hard to stay positive. Unfortunately she still hasn't started specific treatment, not until the final marker tests come back.
I'm sad and angry it's been over a month without real treatment as she had to go get a mri today to rule out the cancer spreading to her muscles or nerves. I'm praying that the pain is only due to it being in bones but seems like this is spreading rapidly. 6 months ago she was totally clear. Her sister passed within 9 months of her MBC diagnosis and I'm just trying not to think the worst.
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lewrite,
Thanks you for the story. Laughter is the only for me to get through bc. I hope to go to my grave, laughing all the way. Your story sounded like something that could easily have happened with my two daughters. It was reminiscent of my younger dd accompanying,me to get my first tattoo, all the while texting my older dd. Lots of laughs and irreverent comments and the comfort of knowing how close we are and how we will be there for each other, come what may.
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Momallthetime, sorry Dani's tm's didn't go any lower but did they stay the same or was there an increase? Alot of the chemo drugs can cause horrible neuropathy, I'm so sorry she's going through that. Alot of those chemo drugs would be off the table for me because of my MS, they said it would be really bad for me, especially the taxanes. I pray to the good Lord to let the anti-hormonals work for me for a very long time because it terrifies me what treatment choices I would be left with. I'm only just starting to feel a little normal after 5 days from my acupuncture treatment. Something went wrong and I'm pretty upset about it. I was trying to do something to help myself and I made things worse. Thank you for your concern, so sweet of you! Big hugs to you and Dani, I pray for you always.
DaughterLove, thinking of you and your mom. Praying for some answers so that she can start treatment and feel better.
Hugs to everyone here, Annie
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I have recently returned from Thanksgiving. trip to Montana. Lots here to catch up on. I agree this is a wonderful place for support and information. I am constantly in awe of you who are caring for loved ones with cancer including momallthetime, daughterslove and 50s girl.
Linda and one other (sorry I forgot the name). I do not have disability pass now but have thought about it when in more pain. I too put some kind of negative meaning to it. I hope to learn from you wise women.
My thanksgiving was lovely. I was able to visit with cousins I hardly get to see. I had one interaction I am trying to figure out. One really lovely cousin could not stop hugging me and crying when I left. She knows of my dx. She is a very open person and I admire her ability to share. her emotions but I am still uncomfortable with it. I am unsure if that. means I am in denial. I would love to reach out to her but dont know where to start.
Even though I dont post daily. I hold you all in my heart daily and wish for comfort and peace to all.
Mary
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