Bone Mets Thread
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Morning Sarah, how long have you been on the Tamoxifin? I found it took awhile to kick in my tumor didn't start changing till two months in. Side effects have been minimal for me as well.
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good morning all! This was the view from my hotel room last night. This particular hotel is beautiful, set on the inner harbour in Victoria BC. Hope everyone has a good day. Cheers de
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Stefajoy, yay to stable and praying your MRI shows the same.
Terre, I'm doing well. Some days are better than others, thank you for asking. How have you been feeling?
Dee, good luck with rads, what a gorgeous view from your hotel!
Sarah, having no side effects doesn't mean tamoxifen isn't working. Please let us know how you make out in 2 weeks.
Aurora, thinking of you today as you undergo surgery, sending positive thoughts and healing hugs!
Hi Deanna, Lindalou, Linda, Chelle, Jobur, Lynnwood, momallthetime and everyone else here.
Hugs to all, Annie
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Linda, it sounds like you did a wonderful job last night! It must have been an extremely difficult topic to speak on and keep your emotions under check given the the situation. Good for you! I know your friend's daughter must have felt incredibly supported by you and the others there.
Dee, love the pix! You live in such a beautiful area. And by the way, I think I've stayed at that hotel, although I can't recall the name of it at the moment. If it's the one I think it is, my hubby was also staying there on 9/11, and had to stay an extra 10 days because he couldn't get back in the US.
Lynwood, glad to hear about your welcome back to work. It sounds like you're very much cared about!
Can't believe another weekend is here. It feels like 2015 has flown by, but that's probably because it seems like with mbc we are always looking ahead on our calendars to the next onc appointment or next scan. Sometimes it's very hard to slow things down and live in the moment, at least for me.
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Hi ladies,
I was in bed all day yesterday! Got the flu shot 2 days ago and I had a NASTY reaction to it. Feeling better today but still headachy, and back to work. Busy at work. I am only caught up to Oct 14th so far. You ladies write a lot but didn't want you to think I forgot about you.
Will write more later.
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Cjanet, I hope you feel better soon. Just when we think nothing else can happen, it does, right? At least the flu shot reaction shouldn't last too long. Take it easy till you recover.
Lynne
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Guys i have this on my Fridge, got it from my kids:
Said Christopher Robin to Pooh: You must remember this: You are braver than you believe and stronger than you seem and smarter than you think" I love to read this all the time.
Cristina so tough to have to deal with ONE more thing. Feel good soon.
Sarah would he consider a biopsy? There are many different kinds, maybe something changed...
Stefajoy at least he is following it up with an MRI and not just letting it slide, good for you.
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CJanet - hope you feel better soon!
Lynwood - glad work is going well. What a nice welcome back for you!
Wow Lindalou - as they say here in New Zealand - good on ya mate! Well done. That sounds like it was really hard and emotionally draining. So proud to know you! I'll post some new kitten pics in a minute.
Beautiful sky Dee. Sending good thoughts for your radiation.
Aurora - sending positive thoughts for your surgery today.
Annie - I'm much the same. Some high pain days, some ok/good days. Did a huge walk around a nature reserve when my cousins were here last weekend. I did pretty well all things considered. And was only a little sore. The arthritic knee gives me the most pain and trouble.
Deanna - time is moving way too fast. I asked one of my team at work how his trip home (to Malaysia) was - and he said "the one I got back from three weeks ago?" Hell...how embarrassing. The only good part of time moving fast is that we'll be moving into our own house in five weeks!
You hanging in there, Dune?
Greetings and hugs to all,
Terre
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Linda, it must have been so satisfying to see such interest after your presentation. It sounds like you did a wonderful job. Thank you for educating people. I wish I had known more about mbc before my dx. I was so naive.
Lynwood, I was tears-eyed when I read your post. What a fantastic welcome back you received. I hope it has helped make your transition back to work a bit easier. Find some time to rest this weekend. I imagine that your first week back took a lot out of you.
Aurora, I have been thinking about you today and hope that your surgery went well. We are all pulling for you and wish you a quick recovery.
Deanna and Terre, Yes, time is flying by. It is already Friday, and I didn't accomplish half of what I had planned to do this week. Oh well, the weekend is here now, and I will be sitting at grandsons' soccer games tomorrow. It is going to be cold and windy here tomorrow, so I will have on a sweatshirt, jacket, hat, and gloves and will be wrapped in a blanket as I watch. Where did the summer go?
Momallthetime, I do enjoy the wise sayings from Pooh and Christopher Robin. I believe that everyone on this thread has become braver than they believe, stronger than they seem, and smarter than they think. They are also kinder than they feel. Without everyone's support here, I would not be as brave or as strong or as smart as I am becoming.
Stefajoy, congratulations on being stable. I hope the MRI looks good.
I know that I have missed people, but you are all in my thoughts and prayers. I hope everyone has a weekend filled with joy and love.
Lynne
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I've been lurking in this thread for a while, but I now think I'm becoming a bona fide member of the Bone mets club! When I was first diagnosed in January, the post surgical scans found 2 small mets - one at the top of my femur and one on my ischium (pelvis). So the planned chemo was cancelled and i was put on Tamoxifen. The only SE from tamoxifen has been the hot flashes, and I have never felt any pain in my hip, so I've been cruising along reasonably well, considering. (Except for the lymphodema, the new arthritis in my knees and the cough that won't quit).
Last month, I had various twinges in various places, so my Onc sent me for x-rays and scans. My Onc rang me a few days after the X-rays to give me the good news that the x-ray was "all clear". I have not heard from my wonderful (NOT) oncologist since then . Good news, right? WRONG.
Unknown to the onc, I have access to my medical records online through my local Medical Center, and have in fact read the reports on the scans.
The x-ray report said the met in my femur has not changed, but then quoted the wrong location and size, and the ischium one could not be seen.
The bone scan report says there are new mets in my rib and ischium - definite progression.
So, how many mets do I have? Why has the onc not told me? Does this mean the Tamoxifen has failed after only 8 months? Why have I not had the CT or MRI he told me he had ordered last month?
I have an appointment to see him on Wednesday - it will be interesting to see what he tells me. I have a good mind to not let on I already know and wait to see how he gives me the news (if at all).
I am more angry than scared, and I will let you know what happens on Wednesday. I just hope I can keep my cool, and not tell him what I really think of him (which is not a lot). Unfortunately, with the way the medical system works in New Zealand, the only other oncologist I could switch to is this jerk's boss.
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Wow, Suems. I was going to suggest a change in once until I read your last sentence. That really stinks. Is it possible that the jerk's boss would handle your case better than the jerk himself? Would it be worth a try?
I am trying to decide how I would handle your next appointment. There is a certain degree of satisfaction to be found I listening to what he says and then calling him out on it. On the other hand, it might be better to tell him what you already know and ask why he didn't reveal the facts to you himself. Did he not look at the scan or read the report? Does he think the changes are of no consequence? Is he waiting to tell you face-to-face? It will be interesting to hear what he says.
I would be angry, too, by the way. I hope. You get the explanation you need and find out if you need to change tx or stay on current plan a bit longer.
Let us know what happens. Sending good vibes your way.
Lynne
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Suems - that sucks. Is there any way you can spend $450 for a consultation and go to Palmerston North? You're welcome to stay at our place (cats and chaos, but free) as an in between spot. I had similar crap luck with the Wellington oncologist, who had me written off from the beginning, didn't tell me about risks of Zometa, etc. Just a fountain of mis- and non-information. The cancer nurse suggested I book an appointment (which I had to pay for myself) with Dr. Richard Isaacs (http://www.breastcancer.org.nz/Share-your-story/Tr...) for a second opinion and maybe some recommendations. He's amazing. I know he sees women from all over the country, and I know he was working in New Plymouth last week. It's the best $450 I've ever spent. I think he's saved my life - I was so depressed and without hope before I saw him.
And I am happy to put you up for a night or two - that's quite sincere.
Sending hugs.
Terre
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Dear seems, I would probably let the Dr have it, I am a retired nurse and don't have a problem telling the docs what I think, a lot of times it helps. My toms are stable and my breast tumor is smaller and softer on ibrance but I'm still having a lot of back pain. I will be starting 15 treatments of radiation on the 26th. The possible side effects sound a bit scary. Hope all have a good weekend.
Marilyn
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In fact Richard Isaacs is Malcolm Anderson (the jerk)'s boss. They both come up every month from Palmy, so thank you so much Terre for your offer, but hopefully I can see Richard when he's here on Wednesday. I think for an independent opinion I would have to go to Waikato - I can stay with my MIL in Hamilton.
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Lynwood, thank you for posting the picture. Your coworkers obviously know how special you are.
Lynne
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Thanks Lynne! Couldn't figure out how to post a picture and write in the same post! Very technically challenged!
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Hi Wendy. I have been on Tamoxifen for 10 weeks now, will be twelve weeks when I see my onc. How long have you been on it
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Lynwood - great picture! How fantastic to get such a great welcome back!
Suems - tell Richard that Terre Maize (that's me) suggested you talk to him because you're disappointed in the lack of information from jerk-face. I've found Richard to be fantastic and he likes that I "have spunk and an F-You attitude" to the cancer. He also likes that I'm well informed and ask questions. So, I would tell Dr Jerk that you want to see Richard, that you are disappointed in the lack of information, and that you'd like to work with him and Richard to assure that you are better informed in the future. If I were in Richard's shoes, I'd want to know what kind of care people were getting from someone who works for me (you can tell him I said that too). Also tell him that if he'll get the jerk straightened out, that you'll send him (Richard) a holiday card every year that says "still here thanks to you".
Sending hugs to all,
Terre
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what kind of biopsy
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hi ladies, finally caught up but I've forgotten what happened. My brain is total mush. Lynne, love that photo. I'm trying to focus more and more on people who give me good energy rather than those who drag me down. But what do I do when it's my husband dragging me down. Sometimes I fantasize about being on my own which might be easier than all this negativity. So tired, need to get to sleep
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Cristina - hope you get some rest. Is there any way you could get away for an overnighter somewhere? Just get a break from everyday life? I know when I travel for work, sometimes I don't tell anyone I'm going to be in town and just veg at the hotel, watch tv programmes I want to watch, have a glass of wine, etc. And it does help to just have that escape from reality, even for one day and night. Sending you hugs.
Terre
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Terre what good advice. Cjanet not much wisdom for you but thinking of you and sending peaceful thoughts your way. Sometimes with my dh I just repeat to myself mantra like "those are his feelings not mine." Sometimes it helps good luck.
lynwood thank you for the beautiful picture to go with the beautiful story.
Sorry to everyone dealing with progression and treatment changes. Going through radiation myself for first progression since met dx. It is disheartening but this sight. continues to bribg me hope. Sending peaceful hopefull thoughts to all of you.
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Hi All! Finally made it home late tonight. They ended up radiating only my rib, but she told me they were doing a different kind of radiation because they wanted to do the entire rib not just the met. They spent quite a lot of time setting everything up, doing it with a wire. I had rads laying on my tummy which I've never had before & was under the machine for a long time, in 2 positions.
It is very itchy tonight & I can already feel the tumor flare, but I'll take pain meds & am heading to bed. I'll get caught up tomorrow.
Take call all, hugs to those who need them, Cheers, Dee
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3-16 - sorry you're going through rads and progression. Hang on to hope - it's all we have some days. Love the mantra. Great advice.
Dee - glad you got the rads done and got home. Sending good thoughts.
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Sitting here drinking my coffee and catching up.
Mary, One week done! It took me awhile to feel the pain relief from rads, but it will come.
Dee, Loved your photo. Beautiful and serene. I forgot about the itching until you mentioned it. You probably have already been told, but Aquaphor and Biafine help with the itching and burning too. My rib itched too. I remember wanting to rub against a tree like a bear!
Suems, Welcome. Terre's advice sounds like a good idea. Hopefully you will find and get the care you deserve.
Chistina, are you feeling better after your flu shot? Can you plan a day away with a girlfriend? Sometimes physically getting out helps and doing something you enjoy helps. I've done that myself.
Lynnwood or (may we call you Deb?) Thanks for posting your picture. How great is it that you were so welcomed back?
Best to all....
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Good morning to all,
Terre, good for you doing that huge walk around the nature reserve. Sorry about your high pain days but glad you're having some good days too. Much the same for me so I run with the good days when I get them. You'll be in your new house soon, I'm so excited for you!
Lynnwood, thanks for sharing the picture, how nice to have such a special welcome back. You look great!
Cristina, I love my husband to pieces but let me tell you sometimes I need my space. Especially now that he is laid off going on 6 weeks and can get very grumpy, drives me crazy! So I just plan little getaways for myself and it really helps both of us I think. I hope things turn around for you soon.
Suems, good luck with the other oncologist, it sounds like Terre gave you some really good advice. I had a jerk onc too and I dropped him like a hot potato although I do suspect he's still overlooking things because he is head of oncology at our Cancer Center. Best of luck to you.
Dee, you have me curious as to what type of rads they used on your rib. I never had any itching, strange. I went every day for 2 weeks straight lying on that table for almost 2 hours at a time, it was grueling! Hoping your tumor flare pain settles quickly. Sending you hugs!
3-16-2011, sorry you're dealing with your first progression but praying the radiation helps and you return to being stable for a very long time.
Lindalou, must get my morning coffee!
Wishing everyone a great and pain free weekend. Hugs to all of you, Annie
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Suems I think many of us have had issues with an oncologist at one time or another. I changed mine fairly quickly now I'm very happy. The boss may be somewhat better ? The advice from Terre is good I had to bite the bullet in order to see a orthopaedic surgeon here in Canada for a botched knee operation. New Zealand's healthcare sounds like it runs similarly to Canada. Once I had paid my $450 I was in. Here's hoping you get the care you need and gets some answers about treatment options.
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Who here gets a flu shot? I've never had them, even when I was going through chemo but I'm starting to think this might be the year...
Hope you are enjoying the weekend.
Amy
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Amy, I get a flu shot every year, I have for about 12 years now. DH has also gotten them since I got BC 6 years ago. Our family Dr suggested it. We've never had the flu & even a seasonal cold only lasts a couple of days. I do get a nasty reaction to it, bad headache & very painful at the injection site, so they now give it to me in my butt.
Annie, I didn't ask what type of rads, RO only mentioned to me that it was a different type & it involved wires but I wouldn't know the difference. 2 hours in there, wow, that's a long time! The itching for me is almost immediate, they said it's very common with this very targeted therapy. It's good this morning. The pain at the end of my rib is gone this morning, I don't know if it's just a good night's rest or?
Suems, I really wanted to change Onc but didn't and it's really too late in the game for me to do it, so if you can manage it, I would. Take Terre's lead!
Oh yes, and welcome!!Deb, good pic! Obviously you are well loved.
3-16, so sorry for the progression, hopefully some rads will put you right again.
Cristina, I love my DH very much, but there are times when I need to get away for a few days, it does us both good. He gets out of his head and I get a bit of freedom to do my own thing. We don't realize how much our diagnosis affects our partner and no one ever asks how they are. They are as scared, or more so and men are fixers, they can't fix this. Can the 2 of you get away for a few days of fun, perhaps this would help? Sorry you're feeling this way, hope it's only temporary.
Hello to everyone else on the thread. It's a busy day here today, I have to go to sign up for the Christmas show this morning, I can't believe I even said that word!
Take care, hugs to those in pain, cheers, Dee
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