Bone Mets Thread
Comments
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Virginia - I so appreciate your very honest posts! I giggled about calling the MO because of a sty on your eye - not because it's funny that you have anxiety, but because I can so relate! My right hip has been sore for a few days and I'm being calm while totally freaking out, trying to remember the pain in the left (cancer) hip and if this feels the same. Had a high pain day yesterday - cancer or strange sleep position. On an intellectual level, I know I'm being silly. On an emotional level, I freak out a bit. So seeing that someone else has the same mini-freak outs really helps me feel more "normal". So...thank you!
CJRT - I'd echo what Virginia said and also what Chrissy said - a slight increase isn't likely cause for concern. Chrissy - I didn't realise that allergies could raise tumour markers, so thanks for sharing that.
Speaking of anxiety, I have to speak at a pink ribbon breakfast in 2.5 hours and haven't quite finished writing my speech. Thanks again to all who gave me ideas about what to share. I'll let you know how it goes!
Terre
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Thanks, Virginia, for normalizing the anxiety and sharing your experience. It is so great to have a board like this with people that truly "get" it.
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Well I've got some not good news. In April my tumor markers were up 30
points. I had them done again last week (mid May). They are up 30 MORE
points. I had a low of 130's in February, that was as low as I got. Then
166 in April, now 196 in May! What to do? Arimidex seems to be failing.
My dr is of course very busy, yesterday was a holiday here, now he's
playing catchup! All I know is he will call me "soon" after he thinks it
over, determines my next plan of action and writes "new orders". I have
been on Arimidex since June 28 2013 (when I was first diagnosed with
"it's back and it's stage IV) and Xgeva to strengthen my bones since
October 2013. You can see by my profile what I have but I'm ER pos, PR
neg, Her 2
neg. No organ involvement per the PET scan in Feb (and it looked better
than ever). But I did have a lot of lesions from the beginning (that
were not lighting up in Feb) in
my skull, spine,ribs, sternum, pelvis, hips, upper left arm, upper left
femur (thigh). Lymph nodes in chest went from pos to negative after
Arimidex. Still
have sight pleural effusion (no change since drain last July) and
pericardial effusion (that I didn't know about till May). Now the tumor
markers are rising, 30 points in 1 month, last time it was 30 points in 2
months!! I guess I'm about to change meds. But now what???
HELP!!!0 -
wanderingspirit,
I hope your mo comes up with a plan soon. I have no medical expertise, and you may have done this already, but have you had a second opinion? If nothing else, it can be comforting if another doc concurs. Interesting about your pericardial effusion. They discovered that I had one after an echocardiogram.My mo ordered a PET after that and that's how my bone met was accidentally discovered. The pericardial effusion is still there but is considered idiopathic. So had it not been for the pericardial effusion, I would still be thinking I was IIB. Take good care and I hope you have a new tx plan soon that knocks those mets back down.
Caryn
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wanderingspirit your onc may just change your AI as mine did after a progression. I started on Arimadex and was changed to Femara which got me to and so far us keeping me at NED.
Heres hoping whatever is decided upon knocks the cancer back quickly.
Love n hugs. Chrissy
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Wanderingspirit, I'm sorry about your bad news! If I'm reading your tx lines right you were one it for almost a year this time and also with your earlier stage dx, right? I'm obviously not an expert, but, from what I understand, if you do pretty well on one hormonal therapy then you're more likely to do well on another. I hope that's true in your case and the next thing is successful and easy to tolerate. ((hugs))
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Thank you Roses. I'm still waiting on my dr. I know they are busy.
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WanderingSpirit, no matter how busy he is, you are as much a priority as any other patient, and I'm even starting to feel stressed waiting for him to get back to you! Has he always been this hard to reach and slow to respond? Deanna
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WanderingSpirit - so sorry to hear of your not great news. But from what I've read and been told by my oncologist, if one AI fails, the switch to another. And if one worked (at least for a while), then another one should also work. It just varies from person to person as to which one is best for the individual
Hoping you get a treatment plan soon!
Hugs,
Terre0 -
If you have faith in your doctor, I would believe him/her when they say they are weighing options. Increase in tumor marker does not necessarily mean a treatment is failing. If it was that clear cut, tumor markers would be the bread and butter of oncologists and their job would be so much easier. Tumor markers were never mentioned, not even one time, in a whole year of visits,by the breast cancer oncologist at Fox Chase in Philadelphia - a dedicated cancer hospital. Even supposed flare ups on a bone scan may actually be signs of healing versus disease. So it takes the expert discernment of a highly experienced oncologist to read these results. It is good to keep the arsenal full of options, so they always want to have another treatment "in their pocket" - so abandoning a treatment is done after careful consideration. Sometimes things appear to be working and they aren't. and sometimes it is the other way around. So other metrics aside from markers will help your doctor decide if the change in number is really meaningful. From research I have read, the use of markers is very controversial and complex. A lot more data is needed. Good to keep track of but not necessarily to panic unless there is a stunning change.
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Hi I've been reading the thread for a month now and finally reached the bottom! Whew! But it was well worthy since I learned a lot and now I can start posting a little bit since I don't have much to contribute. I was initially dx in 2009 iia with lymphnodes involvment. bmx in may 2010 right breast and 16 nodes 14 which were active. Last year I started feeling pains and immobility in my hip but couldn't get seen by a doctor bc my ins. did not start until a few months later by then it was too late and I had a broken femur. when they went in the surgery they found bc had spread to bones, ct and pet showed bone mets in several places ( I don't know the details since I was too loopy from pain meds and my daughter did not write it down). I spent 3 and a half months in the hospital due to a surgery related injury (for which I'm suing the hospital). I've taking arimidex since July 2013 and on zometa monthly infusions. The only major se's are hot flashes from the arimidex and nightsweats. Hip and groin pain but not taking pain meds its quite tolerable. Still walking with cane. I feel optimistic most of the time specially after reading about Ned and stable in some of you. My last scans in february of this year the onc, said the original areas showed no activity and no new areas. I don't know if this is Ned or stable but I'll take it either way. I will continue reading your suggestions and ideas and sharing from time to time. Great place!
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Hi Auroaya,
Welcome to the group! Sorry your surgery went wrong; that's awful! I had a pin put in my femur;it was cracked, but not fully broken and was how they found my bone mets (hip pain that went on and on but no one would listen). No new areas and activity is great news! Mine was much the same in Feb. I go back to the oncologist in July but I feel like I'm probably stable. Just arthritis pain and fatigue, but otherwise feel fine.
Hugs to all,
Terre0 -
My bone mets were discovered with serious hip pain, too. I have read on this board that many of us have that hip pain, and end up with surgery to repair bone damage. I was in the hospital nine weeks. During that time I had hip surgery, started chemo, and had lots of PT. I no longer need to use my cane.
I am on arimidex, and then monthly Faslodex shots and Zometa infusion. So far, this combo has worked for me.
Auroaya, I'm sorry you had such a bad time. I hope you will get stronger soon.
Kiwi, I hope your femur is healing well.
Hugs and comfort wishes to all.
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Hi all, thanks for your encouragement. I had a PET scan the other week and the nurse called to tell me the doctor says it's "great news" because nothing is lighting up still! He will see me for my normal appointment on Monday June 16 at 4:20 and I'll ask him then why the tm's are going up not down, and have never been within the normal range. I think he's going by the scans though.
Thanks again!
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That's great news on your scan! Good luck on Monday!
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Birdlady sounds like you have definitely found the right combination of meds for you.......fabulous! I admire your ability to stay in hospital for nine weeks....wow!.....I hear you on how good it is to not have to use your stick, I had a total knee replacement two weeks ago and I'm hoping to graduate from walker to stick this week....lol....I'm working hard to get rid of everything and just stand on my own two feet......it feels good doesn't it?
Hi Auroaya lovely to meet you. You have had a bit of a rough into to stage IV but glad you have found this forum.....there are some really lovely ladies here and I'm sure you will feel at home in no time at all. From your last scans reading no activity and no new spread, that is what we call NED or NEAD No evidence of active disease. YAY you!!!!! congrats!!!
Wanderingsprirt Congrats!! Your scan results are great! Some doc only go by scan result as the markers for most people are unreliable. He would have been watching what they are doing in conjunction with your scans.
Teri hope your femur id healing well and you are getting on to your feet once again.
Love n hugs. Chrissy
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Terre,
You may have already posted this but I missed it -- how did the pink ribbon breakfast go?
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Wanderingspirit - I am very impressed that the nurse called you before the weekend so that you wouldn't have to wait. That was a real gift. Thoughtful Doctor.
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Hi 201 - the breakfast was great. Sadly, it wasn't as well attended as had been hoped as there was another community event happening, but we raised over $800 from a very small crowd. All the men being auctioned off showed up. Highest auction prices were for Adrian (who I had met the week before and who offered to be auctioned) to cook a dinner for four at the winner's home ($180 was the winning bid) and $175 for Wayne to do odd jobs around the house. I got my windows washed inside and out by a retired window washer for $50.
Lots of lovely food (donated) and the venue (also donated) was great. We had a musician performing, a silent auction, and three speakers. One speaker was from the Sweet Louise program, which provides Stage IV BC people with $500 in vouchers each year. We can use the vouchers for everything from house cleaning to yard work to massages to reiki healing. The NZ breast cancer foundation helps support Sweet Louise, so some of the money raised will go to them. The items that weren't sold at the silent auction were taken to another event and auctioned off there, raising another few hundred dollars. All in all, a great success. 0 -
KiwiCatMom - I think that sounds like loads of fun!
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I Love your post...Ah I love people like you who disprove them all....I know that many many people fight cancer with all their might and still lose the game...But there are enough people like you to give us all hope that we do not necessarily have to "throw in the towel" based on tests or what might happen...I wish for you a long long life to keep screwing up the doctors statistics. Carolyn
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Thanks Brigadoon! The pink ribbon breakfast was fun. My birthday was today and we had friends over for dinner. I'm from the US, living in New Zealand, so we had an American theme for food - Tex Mex extravaganza - build your own taco/burrito/whatever. And angel food cake for dessert. The NZ and UK people we had over hadn't had angel food cake before, so it was a treat for them, especially as Adrian (high priced auction boy - see post above) brought passionfruit syllabub, blackberry compote, fresh blueberries rolled in sugar, and preserved lemon peel. Yummmmy! Lots of good food, good wine, good company, and laughter. Just keep on keeping on. Ironic that I kind of hate being 59 but am really glad to be 59 and still here. Awkward age, I reckon. I'm sure 60 will feel fantastic!
take care and hugs to all,
Terre
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Teri so glad your event went as well as it did for you.......good work!
Happy Birthday for today! Believe me, every birthday is a bonus regardless of age........I used to hate mine but since the BC dx I just love them!!.......lol.
Love n hugs. Chrissy
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KimiCatMom - Wow two of my favorites. Was the angel food cake from scratch? My grandmother was a master at that. The toppings make my mouth water. Inability to eat is not one of my SE's.
What foods are unique to NZ?
I will be 70 in August. It's funny but I love watching how my body ages. I can see my mother in my hands, my grandmother in my shoulders and arms, etc. I am a celebration of all who came before me! I have certainly not faced as much hardship as they but my laugh lines are a result of their ability to enjoy life even when it isn't all sugar.
HaPpY BirThDaY!!!
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Terre,
Happy birthday! Your feast sounds delicious. 59 will be a good year and better than not seeing 59:)
Caryn
PS: I'm just about a year behind you. Growing old has never seemed so good as it does from the stage IV POV.
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Ditto what Caryn said about growing old from our POV.
I too am just behind you- 58 in Dec. Remember that nonsense, "You can never be too thin or too rich" or was it too young, Whatever. How about "You can never be too old and too active."
Happy Birthday, Terre!
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Happy Birthday Terre!
Leah
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Happy Birthday! Hope you have a lovely day, Terre.
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Thanks for the wonderful wishes! I am seriously grateful to be here and still in relatively good shape. Happy to be 59 and looking forward to 60. And even more so to 62 when I can start collecting social security if I want to.
I've traditionally had more of an "age crisis" thing before the milestone birthdays - 29 was more traumatic than 30, etc., so I'm not surprised I'm having a bit of an OMG I'm OLD thing going on. I still have the maturity of a 14 year old and am very aware that being 59 is much better than not being here for the event.The angel food cake was made from a mix - Betty Crocker to be exact. Ingredients here are different than they are in the US, so most US recipes, especially for baking, are flops. I got the mix from the American food store. My mom used to do a great one from scratch with seven minute frosting. Standards are way too high for me.
New Zealand unique foods: probably meat pies (kind of like a US pot pie, but hold in your hand size and you can buy them at the petrol station or quick mart places), custard squares (pastry base, firm custard, and sweet frosting-like topping), paua (relative of abalone), cray (lobster sized from the ocean), Marmite (which is made here). Pavlova, although the Australians claim it as their invention. Totmato sauce, which is like ketchup, only sweeter. Putting a slice of beetroot and an egg on your hamburger is also big here. Seems like everyone returning to NZ mentions that you can't buy a decent meat pie anywhere else, so that's probably the biggest one.
I have mentioned before that we have office dogs in our Auckland office. Oscar is my buddy; it's true love between us. And he sent me a birthday wish!
Hugs to all and thanks again!
Terre
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Terre,
Oscar seems like a lovely dog! Hope you thank him with a bit of a meat pie.
I laughed when you mentioned the beets on hamburger. As we were puttering around Auckland, my SIL's brother had to check out McDonald's to see what menu items were different than those in the US.He proudly came out with the aforementioned hamburger with beets! Now, beets are one of the very few things in the world I won't eat, so I didn't taste it but, but others like it. It was called a Mc Kiwi or something like that. As for meat pies, we had hangi pie in Rotorua. The filling had been cooked in a geothermal "oven". I also loved kiwi juice and golden kiwis, which I've never seen in the US. It was good. In Hobart (AUS), I had a very delicious curried scallop pie.I think I've already told my Marmite story, but let's just say that my SIL's sister slathered it all over her breakfast croissant mistakenly thinking it was chocolate..
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