Bone Mets Thread
Comments
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Awesome news, JustJean! Now your cruise can be a real celebration!
Sorry about the higher TMs, Linda. If it's any comfort to you, when I asked my UCLA onc recently about higher TMs in view of a stable CT, she said she wouldn't worry about TMs unless they double.
I've spent a few days dealing with some sudden rib pain and an almost constant headache. Thank goodness the rib pain seems to be improving some. No idea what could have sparked it, and confusing when my recent CT was all stable. As far as the headache, I'm hoping it's from an inconsistent amount of green tea, which I'd found myself drinking a lot of and now cutting back. Also others in my household have been sick, including headaches, and we had some of those high winds that bring in our summer heat and sometimes I think those air pressure changes are headache-causing. But hard not to let our minds go there...
The only other "excitement" in my life is that I got a whopping speeding ticket a couple of days ago, which had me wondering if I should have played the cancer card, or if it would have even helped. I'm over the annoyance of the whole thing (at least until I have to write the check!), but it's especially frustrating on top of a couple of surprise medical bills, including one from my hip surgery more than a year ago. Just day-to-day frustrations, I know, and I try hard to let them go because they can impact our health if we let them get to us. But sometimes it's hard not to react.
Looks like BCO as a whole is much busier this a.m. (((Hugs))) to all! Deanna
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Hello everyone, glad to see the thread humming again.
JustJean, so happy for your good news and stable scan results! Now you can relax a little and enjoy your cruise.
Linda, nice to hear from you and glad you've got your pain under control. Try not to worry too much about your tm's, I know easier said than done. It's a gorgeous day here today, 20 degrees and I feel better than I have in awhile. Spent the whole day doing leisurely things with my niece who is here from England.
Deanna, sorry about your speeding ticket, but you're so right about letting go of the day to day frustrations, I'm sure it does impact our health. I hope your headaches go away soon as well as your rib pain.
Hugs to all, Annie
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Thank you Deanna and Annie. I'm not really worried about my TMs, we all know they are not always reliable. My last bone scan was 6 months ago and I'm due for another one. I'd rather have a Pet scan this time but oh so hard to have one because of waiting lists. Annie, is it the same in Ontario? I had one in Feb 2014 - I'm really gonna push for one this time.Deanna - go easy on that pedal! lol - Hope you feel better.
Dune - did you have your first Taxol? and how are you?
Linda
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Hi everyone...Basically just saying hi and echoing what the others have said. Deanna - bummer about the ticket, but you're kind of my hero. Girl racer!
JJ - Congrats on stable!
Hugs to all,
Terre
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Hi, I need to go back and read a number of pages.
But Dune, I wanted to check how your sleeping has been? Fatigue is my biggest side effect right now. I need to sleep 10-12 hours a day. And, like you, I am a night owl, so I am sleeping till 10am or noon. I am still working (although from home), so this is a challenge. And I was initially having trouble falling asleep also, so some nights I was up till 3am and sleeping to 3pm! I have tried to get the going to bed part better, no screens (hence why I find it so hard to come on here
) and I starting taking melatonin before bed. I try to be in bed by 11pm, but somehow it seems I'm not turning my light out till midnight. I used to wake at 8:30am and start work at 9:30 (well post dx, pre dx I had to get up at 6:30am), now I am not starting work until noon usually.0 -
Yes Deanna...I think it's ok to play the C card :-) I got out of a speeding ticket when I seriously mistakenly gave the cop my Scca (Seattle cancer care alliance) card in place of ins card! I didn't even realize it til he came back & asked me what kind of cancer I had. I looked surprised and he handed my card back! I was embarrassed..but he said his fiancé was treated there & he hoped I was healed! I cried! I think we deserve any break we can get! Headaches? Do you have allergies? My onc told me just to take Claritin every day...I had miserable headaches that I was sure were brain mets & she wouldn't scan. The Claritun worked wonders...now if it'd just stop my leaky nozzle nose!
Good Lord..earthquakes at two ends of the earth. We had very mild ones in Seattle but living in So Cal brought a whole new fear of what could happen. Glad you're ok GG & Kiwi! Kiwi...we lost a cat in a move. We'd moved from Seattle to Ssn Diego, flown the animals down, moved into a rental while house was built & 2 weeks later, Muffin was gone. We knew there were coyotes in the hills, but she was a seasoned outside gal. Her 2 yr old daughter & dog were fine...but we went months pining & searching for her. I SO hope your baby shows up.
I talked to my onc about biotin & he said 2000 mg a day was fine. At this point my nails are worse than my hair...except sparse eyelashes. I also judge my mental state on my hair. I got it cut Fri, it was uneven so I was a biotch to my poor DH. She fixed it Sat & life was great! I feel so stupid sometimes.
Freebird...excellent suggestions from sisters...hope there is help for you. I know you have a good group of friends...can you really express your needs to them? I'm thinking they'd be there for you.
cjanet...I thought femara was to blame too! As it turns out...bring her2...not much was going to stop the critters from growing, aside from biologics. Such good words here...I pray we're all here, sharing tales years from now!!!
Patty...take care & post when you feel good...soon, I hope!!! Glad for stable news JustJean. Dune...I'm so hoping all goes well w/your port...and that chemo knocks the socks off an critter cells lurking about!
My onc still says no scan, my rib pain is muscular & since my TM's are hardly measurable, .7 cea & less than 5 on 2729, he shared the R word...which I thought was obsolete in cancer lingo. Herceptin/perj & letrozole seem to be what my body was craving. In the meantime, you've all helped me so much, in so many ways. I agree Dune...this is the place we can be ourselves. Love you all.
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Hi all, Could anyone who is on Femara advise me on whether it is best to take it in the morning or the evening, on a full or empty tummy? I'll prob be adding Afinator to the mix in three weeks time so if anyone has any advice on that too I'd much appreciate it. thanks xx
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Aoibheann - My pharmacist told me to take Femara at supper time - so every day at 6:00 p.m. But, it can be taken with or without food - but at the same time every day. If you look at A/A combo thread, some take the Afinitor it with marshmallow to avoid mouth sores.Linda
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Oh, ReadingMama, I find it to be a miserable situation when I can't get to sleep. I had it under control pretty well, then the doctor screwed with the xanax again. In the name of God, why????? So there were bad nights and then a major flare in my inner thighs from pubic bones to knees. The pain was excruciating and I couldn't walk. So, that interfered with sleep. I still have some pain from that, plus a bunch in my right rib cage. I assume the thighs were a flare and the rib cage is a result of the tension from the thigh pain. I had to do a stress test this morning to complete my workup for the port implantation that happens Wednesday morning. Then Taxol on Monday. So I haven't been able to keep in touch here. I had a bunch of notes about stuff going on with all of you, but then all this stuff started throwing me for loops. In light of not being able to take my full dose of xanax to sleep, I have been taking 3 OTC sleep pills. 3 do help a little.
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Linda, it's not that it's hard to get a pet scan in Ontario but for some reason they do not like to use them as much. My onc brought it up to me last May when they saw the first met on my sternum but then mumbled something about its accuracy and dismissed it. So we only use bone and ct scans.
RonnieKay, I had a cat that we lost during a move and her name was Muffin too ☺. It turned out she went back to our old house. After trying to bring her back to our new home she escaped first chance she got and went back to the old one, guess she liked it better there.
Aoibheann, I take Femara at 6 pm as well and was told it didn't matter whether you had a full or empty stomach.
Dune, good luck with your port implantation. Praying taxol is a gentle treatment for you.
ReadingMama, I hope you can get a more restful sleep pattern, it must be hard on you. The fatigue is so hard to deal with!
Hugs to all, Annie
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That sounds really good RonnieKay. Really good! Prayers for all of you.
Linda, I love that you are renewing your mortgage today for 5 years. Why the heck not?!?! There are more treatments all the time. I'll be honest with you, though. That's not the kind of thinking that is going on in my head about myself. It will be better, though. I've had a lot of pain, way too much, and I dread some things that are coming up. I'm getting disgusted with myself for not eating healthy and doing exercise. I keep saying I will, but good intentions never really got me anywhere. I need discipline.
JustJean I am SO glad there is no progression. Those are the kind of reports we all deserve.
Deanna, there's no guarantee the cancer card would work; and then I'd have to get mad. I had echo cardiogram and EKG this morning. The tech starts slapping those round things with connectors. She's not really looking and she plops it right ontop of one of my awful, sore swollen lymph nodes. Afterwards, she pulled each of those circles off hard and fast. But shereally hurt that lymph node. So, like, she needed to be slapped. lol. I was in no shape to slap her, but she needed it. If using the cancer card didn't work, that cop might have needed to be slapped. Not a good idea.0 -
Dune, good luck tomorrow, my thoughts and prayers are with you. This thread certainly woke up....LOL.
Happy days to all. Linda, I love you renewed your mtg for 5 years, we all need to visualize years ahead. Myra.
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I don't know how you all remember what has been said in previous posts... even after 5 years post-chemo my brain is still really lacking in short term memory. Maybe once I get to know the women in this group?
YES, I like being stable. Much better than some other things that could happen. Thanks to all for your kind words.
My cruise is to Alaska. I've pulled out all the stops for this one and am not only taking the cruise but doing an awesome excursion in Juneau - my partner and I will board a helicopter, get a tour of four glaciers, and then land on one of them and get out of the copter and walk around. I'm so psyched about this that I can hardly stand it. We're also going with two friends, so it will be a good time. I plan on eating all the fresh salmon I want to, visiting the quilt shop in every port, and only wish I were strong enough to try zip lining. At this point, being only about a month out from radiation pneumonitis, pneumonia and a pulmonary embolism (all at the same time, requiring a hospitalization) followed by the nasty cold virus going around last week.. well... let's just say that to go zip lining in this condition would not be a healthy decision.
In the meantime I am trying to learn how to use my son's dSLR camera so i can take some really awesome pics up there. It's mostly been a fail so far (due to the aforementioned short term memory thing) but I'm not giving up. I have 14 days to master this complicated electronic gadget!
Hope everyone is as well as they can be...
JJ
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justjean,
Sounds great! I'll be cruising Alaska in mid June and will be doing the helicopter glacier excursion as well. I have never been in a helicopter nor walked a glacier. In Skagway, we're doing a hiking/canoeing trip and just walking around in Ketchican.Please come back and tell us all about it!
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I just booked my Alaska excursions too. Soooooo wanted to do the helicopter/glacier/dog sled excursion in Juneau but at $500 per person for 3 of us, I had to book something a little less expensive. Really looking forward to this trip!
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We did that cruise to Alaska several years ago when we visited British Columbia. DH did the excursion to the Mendenhall Glacier. LOVED IT. Rest of the time did just what you did JustJean, sightsee, eat and enjoy. Here's hoping you have the great weather and time we had! Myra.
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Romansma,
So glad you booked your excursions. Yikes, that is pricey. We're just doing the helicopter/glacier landing, without sled dogs, so it's cheaper. Booked it on our own many months ago, which made it affordable. Regardless, I know we'll both have wonderful cruises.
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I just love this thread!Annie - thanks for your response. Although I'm a bit puzzled by these tests. I got a PET scan last year only because I went for a second opinion with the top Onc in a breast clinic in Montreal. The PET revealed a big met on the femur which required emergency surgery whereas NOTHING showed up on the femur on the bone scan. And CT scans were not done below pubic bone. So I'm always scared they are missing something. I'm even thinking of going to a private clinic and pay out of my pocket for the PET. All input, suggestions are welcome. Please help me in this decision as it is very costly.
Hugs to all - Linda
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Linda, don't know if I am much help, I have only had PET scans. My insurance has covered them. I like you get a whole picture from base of skull to knees. I was dx'dby MRI for a back problem which showed facet syndrome with abnormality. When they did the Pet it showed diffuse met disease through my spine and large lytic tumor on hip which was handled by rad tx. Myra.
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Hi all!
Linda, About your PET scan dilemma, I've never had one. If you have the $ & feel that something is wrong & your onco won't test for it then do it, if nothing else it will give you peace of mind knowing one way or the other.
As for everyone taking cruises up to Alaska, good for you! It's a beautiful part of the world. If your ship stops in the Port of Nanaimo, do PM me & I will meet up with you! (There are only 3 ships stopping here this year so it's unlikely but you never know!)
I have an appt with my family Dr, so we will be going through my whole file & seeing what the onco "forgot" to tell me.
Hope everyone has a good day, cheers, Dee
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Dee, not stopping there but will wave in your general direction, lol. We are going to Juneau and Skagway and Ketchikan. An excursion booked for each port but the helicopter ride with stopping on the glacier is my favorite.
Linda, I had a bone scan and a CT scan and neither showed the mets. The PET scan did. I don't know what I would do if insurance didn't pay for it - I work two jobs to make ends meet (the only reason I can do the cruise is because my three friends paid for my ship and airline ticket too! I'm so blessed with friends! ). But given what I know of my own history, I would somehow come up with the money and get the PET If my insurance refused to pay for it.
JJ
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Aoibeann...I take my letrozole at night. I started that w/first dx, thinking if there were ses, they'd be slept off. I also take 2 citracal 2 times a day & since you can't mix AIs w/calcium, I take the cal w/meals & if we eat out and I forget a cal, it's not a big deal. I'm always home for bedtime, so I don't forget it.
Thinking of you Dune! No more arm pricks! I was so happy to get my first port out...this one, that I know I'll have forever, is my lifesaver!!! Hope all goes well & taxol treats you kindly.
Guess I need to go to Alaska...even though I'm not a big boat (or small boat) person...hope you all post pix!
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Thank you Myra, GG and Justjean.Justjean - You've got good friends. You go girl, enjoy and you deserve it!
I saved up and it was either lowering my mortgage or something else. So I will invest on myself and pay for the PET unless our socialized health system comes up with an appt within a reasonable amount of time. My gut feeling tells me to do it. Other than higher TMs, there are physical symptoms that I can no longer ignore: increased and new pain, sweating bullets at night literally soaking exactly like before my dx. If the Pet is good then I will have put my mind at ease, and if not, I'll move on to something else.
Dune - good luck!
Again thank you. - Linda
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RonnieKay, thanks so much for suggesting allergies & Claritin (re. headaches). Never thought of that, but I have cut back on a supplement I've taken for years that supposedly helps prevent allergies, so I think I will pick up some Claritin and see if it helps. I also was thinking maybe eye strain because I've been at the computer a lot more lately, but allergies make sense.
For you Alaska-bound girls (three of you, right?), please take lots of photos for us of the glacier trips, canoeing, and that breathtaking scenery!
Oddball question... Has anyone else noticed a decrease in taste since being on Anastrazole or other A/I? I noticed it recently when I was making a pot of soup and then realized that I seem to be adding more salt to everything. So I looked up SEs from Anastrazole, and sure enough, there it was in black & white! What a stupid SE.
Prayers that your port placement went smoothly, Dune!
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RonnieKay, I didn't know about the not taking ALs with calcium. I do know I can't take my Strontium Citrate within 2 hours either side of calcium, but not Letrozole! Where would I find this info? I definitely can't take Letrozole any time near green vegetables - it really upsets my digestive tract! Thx
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It's been a long time since I've posted but I always read the comments. Just as a reminder I was dx stage IV in 2013 after I broke my right femur due to the cancer spreading. I was put on Arimidex but in February this year I was switched to Exemastane due to the tumor markers rising. I've been getting new pain in the right leg, right hip and right shoulder leg. Scared cancer has reactivated. Today I had my first PET scan in a year after fighting Medicaid they wouldn't pay for it so I bought new insurance and this insurance approved it and I went in today. Next week Wednesday I have my onco appointment and zometa infusion and will know the results for the PET. Please keep your fingers crossed.
Aurora
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Aurora - fingers crossed and wishing you good results.Deanna - did not experience any change on Femara.
Linda
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Aurora fingers crossed for a good PET.
I had an MRI in which I could see myself my own bone mets. I have not seen the PET scan image yet but would like to, maybe next week at my onc's office or I will go to the imaging library. I'm just very curious about seeing it myself.
My husband wants us to do some sort of vacation after we found out I'm stage 4. I think I'm looking into something kid friendly all inclusive in the Carribean. Been to St. Lucia so want something different. Any ideas? I think we may just pull out of our savings for this, I want to enjoy life.
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I am Alaska bound too. Boarding on May 8 from Seattle. Will I meet with any BCO sisters on board?
I had 3 PET scans over 5 years, none of it picked my diffused bone mets, even CT scan raised questions before each PET or bone scan, it was all negated by the following scan. My bone mets was finally confirmed by MD Anderson after two previously negative biopsies were re-tested by MD Aderson last June. The last 3 local CTs showed stable or grossly unchanged, but my tumor marker continues to rise. I don't know because I have a strange case, or the local diagnosis is incompetent, so, I am going back to MD Anderson in June to check out again.
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Ronnie, I was not told I shouldn't take my calcium with my AI (Aromasin). I've been taking them together since my dx in January. What's the problem with taking them together? Has anyone had problems sleeping while taking Aromasin? I'm having a hard time sleeping, and I'm thinking it's that. Maddening!
Cruisers, I can't wait to hear about your Alaskan adventures. That's the only kind of cruise I'd ever consider.
Terre, any Kitty news? I hope she comes home soon. I would be devastated to lose one of my dogs. They're our babies.
Sending hugs and healing energy to all of you tonight. Sleep well and feel good in the morning.
Sharon
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