Bone Mets Thread
Comments
-
Thanks Wendy!
0 -
Contacted MO about the growing blind spot in vision, dizziness, headaches, etc. which have all returned in the last few wks. (These were the symptoms I was having back in Aug when the brain mets were originally dx'd)
She is scheduling me for a follow up MRI. She's not happy about the turn of events, and neither am I.
L
0 -
Prayers to you, Lita dear, for a comfortable weekend and Thanksgiving week. We all deserve an extra piece of pie!
0 -
Aurora....so sorry to hear your news. Sending hugs and prayers.
Jeenee.....you must be so disappointed not to have started your treatment. I don't know about you but I find Tramadol works better for me than Oxycodone but these are personal choices. Most people seem to dislike Tramadol but it works quickly on me whereas Oxycodone makes me feel spaced out but doesn't relieve the pain. We're all different.
I wouldn't mind a cheer up if anyone has one going. Today is a bad day. I've decided to move out of my home permanently. It's an amicable situation but not what I wanted. It does have advantages though. I can make my own decisions, I can look after myself and be independent (except for driving. I have a horrible feeling I'll never get to do that again). My main plus is being independent again. Friends and my son and, I guess, my husband, will drop shopping in for me but to leave a forty year marriage at this stage of the game is sad. And all because he's putting the welfare of a young, able bodied but needy drama queen before mine. I will be ok financially so I count that as a blessing, also that I have a loving son and a lot of caring friends.
0 -
Wow... Leapfrog
I'm sad to hear that you have upsetting changes going on in your life. It seems as if the timing is lousy, but I wonder if you would have ended up here anyway? I admire your courage and drive toward independence, but I am very concerned about the added stress on you.
Wishing you peace in your heart.
- JeeNee
0 -
Hello to everyone! I have not posted, or been reading the board, in quite a while. I have been extremely busy at work, and extremely stressed in my own personal life as my husband is pushing forward with a divorce (and planning a vacation with his girlfriend), and all of my kids are in counseling as a result of his actions. And, oh yeah, there's my cancer. So, please indulge me as I vent a bit.
Since May, my tumor markers have risen from 37 to 877. When I was first diagnosed with extensive bone mets over a year ago, the number was 88. So, I had just gotten back into the normal range (with faslodex and Ibrance) when they started rising again. I had a couple sets of scans, CT and bone in July and then again in September, But they showed very little new activity. However, I have been having headaches, nausea, hearing loss, and I am excessively fatigued, and just don't have a good feeling about what is going on. My current oncologist has not made me very happy, basically writing off the tumor markers rising and saying there's nothing we can do unless something shows on the scans. I asked about doing different scans, and she wanted to take a wait and see approach.
I sought out a second opinion, and that oncologist suggested another pet scan (Haven't had one since I was originally diagnosed stage iv in summer 2016), and a brain/temporal lobe mri. When my current oncologist received that recommendation, she acted like that was what she planned to do all along and of course we should check out the rising tumor markers. She did ask me what symptoms I told the other doctor about that caused her to recommend these scans, and I responded, “the same ones I've been telling you about for five months."
I'd really like to switch to second opinion oncologist, But she isn't taking new patients right now. I figured I would get the scans done, see what the results are and what my current oncologist recommended and if I am not happy I will call the second oncologist back and see if she will reconsider, or could refer me to one of her colleagues.
In the meantime, I am freaking about my scans on Monday. I do not have high hopes of getting the results before the holiday weekend, but I do have a appointment with current onc to go over the results a week from Monday. I would hope she would call me before then if there is anything bad to report, but I really can't bank on that, as she has been generally very slow to report results me. The last few scans I have resorted to calling the office everyday until someone got back to me. It makes me really mad because I know the radiologist read these reports the same day as the scan is done,
I just got a prescription from my primary for some anti-anxiety meds, as I am feeling really overwhelmed right now. Ugh.
Thanks for listening; thinking of all of you
0 -
Lemondrop- so sorry of all that you're going through now. And I'm hoping the scans are better than what you're expecting.
Leapfrog- they say when it rains it pours- you & lemon drop are dealing with way too much now
Aurora- sending you hugs.
For the first time since I was dx with MBC, I am really having issues. Throughout everything I've been very lucky-no symptoms until the numbness in my rt ankle, back of my rt thigh, and rt buttock. Yesterday I finished rads (10) which I found very hard-exhausting plus now I have really bad pain in my rt lower back, hip and rt shoulder area. I've taken my first pain pill since my radical mastectomy. This is hard!! I am also bloated-probably due to constipation. I am getting some stomach cramps-again I'm assuming from the constipation. This week I had blood tests and my liver numbers are up. ALT went from 33 to 49 and AST went from 27 to 36 Due to rads I've been off all other treatment but before I went off them, my CEA and CA15-3 shot up. I'm getting scans on Tuesday and leaving for my DD bday in Paris the next day. I go back on the GDC 0077 this Monday. I already spoke with my MO in case the scans are not good and if that be the case then I go back on Halaven. Not happy about that but what bothers me most is how I'm feeling.
Babs
0 -
lemondrop, with headaches and hearing loss, I'd push hard for that brain MRI and timely results, if you do have brain mets, the sooner it's caught, the more options you're likely to have. I reported a migraine lasting 5 days, had the MRI and got the call the following morning, my MO knows I'm anxious and has done well to keep me fully informed, plus I seem to be an interesting case, (the nurse said), so they stay on top of things. Interesting though, with 5 small brain lesions, my TM's were only 12 and have since been treated well with gamma knife. Good luck and please report back
0 -
Babs, I'm so sorry you are not feeling well. It really stinks! Hopefully it will be better in a few days. Try to get some relief from the constipation. When I get desperate I take Milk of Magnesia before bedtime and that always works. It can be a little explosive though, just a heads up.
Leapfrog, Words are failing me. Close your eyes and imagine a big soft hug from me to you.
Lemondrop, Way to much stress going on in your life right now! I will say, you need a new Mo. One who listens to you and had your back. I am blessed, I trust mine implicitly. I get my lab results, same day and my scan results the next day. Every symptom is taken very seriously, and the appropriate follow up tests are done. This is what all of us need and want from a Mo. As for your son to be ex, he will learn that you reap what you sow. Especially and unfortunately, in regards to your children. He doesn't deserve you! You need to take care of you, and your family! Make sure you don't neglect yourself! And please try to not beat yourself up about this. I am sending you soft gentle hugs also.
Hugs and prayers,
Claudia
0 -
Babs-i know nothing about this but wonder if any of this could be referred pain at this point? Also wonder if the positions you were in for the radiation caused some muscle spasm. Do you have a good body worker ( PT, massuse or other) who could help you with this? People have said that the radiation to your bones can be exhausting. I got it for bilateral chest wall and nodes daily years ago and got very tired and your treatment sounds harder. I hope you can relax totally until your trip and someone’s else can do all the last minute stuff. Also meditation can reenergize an exhausted mind and body.
Thinking of you with hugs and hopes for a wonderful trip ( and scan)
0 -
Ladies,
If you suffer like I did with hot flashes and night sweats you might want to check with a Naturalist DR on the below Tincture that my Naturalist prescribed for me. Every day I have been going through hot flashes and night sweats. That is until I started taking this tincture. They stopped immediately.
You might want to give it a try:
Ronnie
0 -
I am so tired of these near crippling hot flashes. They aren’t really flashes. They are constant. I stay sweaty and sticky and yucky. Even if I get a chill, which makes me sooo happy, my forehead still sweats. It’s disgusting, embarrassing and I don’t know what to do about them. I came off of arimedex for over a year because of this crap, but then my cancer came back. So now I’m back on an AI. This time aromasin. I need help
0 -
Babs. I hope you get some relief. Rads can make you tired but hoping it’s working as you travel to see your DD. Bon voyage. Nkb has a point. A gentle massage might help.
Leapfrog. I’m so sorry to hear this but it sounds like you have made this decision carefully. It will be less stressful to be away. Hope you find peace and relief. So glad you have your wonderful son
Maire0 -
Leapfrog, you've cheered us all up at some point or another, so I know that sunny disposition will see you through. Now, especially and exclusively, this is your time. Make decisions based solely on your needs. Those who love you will rally and surround you. If you're so inclined, find a place of faith for solace and support. Wishing you peace and wisdom in the days ahead.
Lemondrop, waiting for scans/results is cruel and unusual punishment. There is no way around it, you just have to go through it. It sounds like you've got a plan with anti-anxiety meds and oncology referrals, and have thought through next steps. You're ready for whatever comes your way.
Babs, wishing you relief as your body recovers from the rads. When I was initially diagnosed, the rads zapped my energy much more than the chemo.
Swess, nothing to offer with the flashes, but I'm sure others have some tips. Hoping your SE's diminish as your body adjusts to the meds.
0 -
Jeez Leapfrog, i am so sorry for the intense hurt you must be feeling along with everything else. You sound like you have the right attitude and I am glad you won't have to stress over money. But still this massive sudden transition after 40 years has got to be tough. We are all thinking of you..
lemondrop, You too, life can just be one big crushing machine sometimes. hang in there, I hope the scans come out well.
babs, I sure hope you are feeling better before you jet off to Paris. One thing that really got my constipation moving again was taking a probiotic. I swear by the third day things were back on track.
0 -
Thanks everyone. Today is a much better day and, rather than re-type what I just shared on the Ibrance thread, I'll copy it here for you to reassure you I'm ok. Putting aside the situation of the drama queen he's decided to help. That's his problem and, believe me, it will be a problem. Hopefully more so for the drama queen. I'm not being vindictive when I say that, it's just that she's a taker and she's taken a lot from our family; mainly our happiness for a long time, but she hasn't reckoned with the strong bond between my husband and me! Below is what I posted on the Ibrance thread:
Actually, things are looking good from my perspective. My husband and son are still away but, while on a stopover in Frankfurt my husband read an email I'd sent him in which I explained my position ~ that I still love him but I want to be in charge of the direction I take in life now and that I'm enjoying being independent. (They both know what the loss of my independence has done to my state of mind and how important it is to me). That at home I'm a semi-invalid yet here I feel like my old self and have regained my self confidence. My son and I had a chat on Messenger and he told me that they both understood my feelings completely and, rather than try to find a bigger apartment in a very tight market they would help me to make this one more workable and they will make a start on it as soon as they get back, which is tomorrow. I have all sorts of ideas which they agree with implementing. I'm happy about that as I like this building; it has positive vibes and I don't really want to have to pack everything up and move at this stage of my treatment. There's a small supermarket next door and a cafe next to that and a cafe on the other side of the building, the owner of which has an arrangement with me that if I'm not well enough to go and collect a meal on days when I don't want a heated frozen meal, I can text him and he brings it to the lobby for me! I feel at peace with this arrangement but I have a feeling that I'll probably see more of my husband now that I'm living here than I did at home. He's like that...... Thanks everyone for your input. It's been good to talk it out. And, if I change my mind about living here I can always go back home, a bit like a runaway teenager! This is not set in concrete.
0 -
Oh, Lemondrop...I'm so sorry. I meant to include a big hug for you and to let you know I'm thinking of you
Lita....sending you all the love in my heart xxx
0 -
Babs - Sounds like you have a lot going on. Sorry you are in so much pain. I sounds rough! If you need to take pain pills, and it sounds like you do...please remember to take laxatives like colace and senna. The constipation will contribute to your back pain. I have had this often and its miserable. Its such a vicious cycle with the pain pills. So important to keep regular. I take miralax every day and then senna whenever I take oxycodone.
I you need a quick fix, try Smooth Move tea with senna. It will work within a few hours. Just be prepared.
Were the rads for something related to the numbness, or is that a new symptom? If new, please report that right away.
I hope you get some relief. I understand completely what you are going through.
_Jee Nee
0 -
Leapfrog -
Thanks for checking in to let us know you are doing okay. I'm so glad you have worked out a living arrangement that suits you and that you continue to have an amicable relationship with your son and husband. All great news!
-Jee Nee
0 -
Leapfrog - I know you are on the right track. It' still a big change with lots going on in addition to cancer. Thanks for the update. Please keep them coming.
>Z<
0 -
Babs it's always such a timing issue with how it affects our real life. Rads I've heard can be awful at first but very affective for pain after a few days have passed. I believe that's how it will be for you. You will get to Paris and see your beautiful family and feel like a million dollars. So exciting a little baby to cuddle and smell and kiss. You are such a lucky lady I wish you the best on your trip.
Leapfrog I'm sorry you have to deal with this crap too but it sounds like you've thought this through and have a good plan moving forward. I don't know your details but crazy things happy in a relationship when cancer is introduced. Big hug
0 -
"Crazy things happen to relationships when cancer is introduced." One of the big things I learn from this forum is how to keep my marriage together through this and all the support I get here reduces the load on my family ... Allows homelife to be pretty normal.
Thanks all for a marriage saved. ...
>Z<
0 -
Lita,
I've been meaning to tell you this for a long time---- you are amazing! Your courage and strength is beyond any super hero!
I'm usually just a reader (lurker, I guess) trying to keep up with all the latest treatments etc. but I felt the need to add to everyone's comments about just howtotally awesome and inspiring you are.
I hope you find the answers to all your concerns and praying for you all the time.
❤️❤️ Suzy (stllivin)
0 -
JeeNee-thank you for the suggestions. I am taking both Metamucil and solace because I'm on pains pills which is so NOT me. Not much relief as yet. I know it makes the back pain worse soI will add the smooth move tea tonight. The rads were done because of the numbness. The latest symptom is a distended stomach on my rt side-will tell my MO on Monday.
Artistat-I take a probiotic daily because I'm on Keflex daily prophylactically for my former cellulitis issues.
Wendy- I hope you are right- that once I see my kids in Paris all will be aok! I can't wait to see the look on my DDs face when she sees us there! She just better not go into instant labor!
Babs
0 -
Babs- thinking of you and hoping those pain pills kick in very soon. Tiny suggestion is to keep any pain pills in their original bottle and keep a copy of your rx in your purse when in airports.
0 -
Babs, I hope you are feeling better today and I hope you have a great time with Dd! Just relax and enjoy the visit if you can! Sending you gentle hugs as you wing your way across the Atlantic!
Lemondrop, Stay strong... ther are others on these threads who have weathered the divorce storm, hopefully they will pop up with some good advice. Glad to know you have your health needs organized. That always makes me feel better! I love a good plan!
Z, What you said about this place saving your marriage...I fell the same way. Here, I can let it all hang out and discuss treatments, emotions and pain. That way I hope I am keeping some of the angst away from Dh who has enough to deal with.
Lita, You are such a rock here, with all your wisdom, and your fierce determination to enjoy each and every moment! You have given so much to many of us. I am praying for a miracle for you! Please keep us informed re your treatments. I am sending you gentle hugs and prayers.
I'm sure I have forgotten many, but I want to wish everyone a Happy Thanksgiving! I have found much to be thanful for this year and one of the biggest, are you friends here. You have kept me well informed and sane during this past year and I am very grateful! I keep each of you in my thoughs and prayers everyday. We are leaving tomorrow am to be with grands and wont be home until late Sunday night. I will try to keep up with reading, but doubt I will have time to post. Have a wonderful week!
Hugs and prayers.
Claudia
0 -
Nkb. Thanks for that tip!
I am seeing my MO tomorrow. I really don’t feel right!
Babs
0 -
Holding you in prayer Babs!!!!
0 -
Gratitude straight back at ya Claudia and everyone.
Babs I applaud you for heading straight to the oncologist. I usually go into denial for a while before i deal... We're all with you...
>Z<
0 -
My scans and labs are in, and I have a conundrum. Maybe you all can shed some light on what I should do.
For context: I'm in a Phase II trial, in the Taxol-only arm; have been stable on Taxol since January. Before that, I was on oral treatments for years for bone-only mets. My 18-month run on Xeloda (that one got me "extreme responder" status) began to fail near the end of 2016, right before I had a month-long discontinuation of therapy due to infuriating insurance company incompetence, and during that break in treatment the mets moved into my pericardium with gusto. Enter emergency heart surgery, a week in the cardiac wing with a drain tube in my chest, then Taxol because we had to get that bronco back in the barn.
Today we went over my November scans and labs from last week. Mixed signals. My CA 27-29 has been dead-on accurate for ten years now. For the past five months it has been slowly graphing up. One point, then two, then three (nothing major), then a seven point jump in October and 4 points more since then. So whereas last spring I was in the upper 20's, I'm now at 48. For me that means something is brewing. The question is where?
-- All liver & kidney numbers are really good. Alk Phos is actually 9 points lower than October.
-- Echocardiogram last week came up totally clear of pericardial effusion. WHEW.
-- The CT (with and w/o contrast) says bone mets are unchanged from previous CT in September and there are no new ones. Bones remain stable. (I have extensive mets in pretty much every bone.)
-- "No other areas noted." Lungs and lymph nodes are clear. My common bile duct, where lobular mets bloomed in 2013, is "unremarkable."
So what the heck? Bones stable, lungs clear, heart clear, liver looks fine. The only thing I have come up with is that I have not had a scan that included the head since last December's PET. That's the only uncharted territory, you might say. So I told the trial research liaison nurse that I want a year-end PET. She said, "But you don't have any typical symptoms for brain mets, right? So we can't get it covered, probably." I mentioned that I thought some people here with brain mets were asymptomatic--? Is this true or did I imagine it? She is going to push for the PET on the basis of rising markers and she also mentioned doing a bone scan- last one was in January.
For anyone interested in MTHFR, I am homozygous C677T and have been symptomatic since childhood. I asked for a homocysteine check in early November; came back at a whopping 35 (normal range 4-11). I did some digging and learned that my premeds (Pepcid, Benadryl, Dexamethasone) and paclitaxel ALL raise homocysteine-- grrrreatttt. So no wonder. It's been such a three-ring circus trying to balance MTHFR treatment with MBC treatment. What's good for one is bad for the other!!! But I got on the wagon and today (the end of my week-four Taxol break) my homocysteine was 17-- dropped by half in two weeks. Still high, but not terrifyingly so. Naturally now I'm wondering if high homocysteine can elevate tumor markers, but I have not yet been able to find anything on that.
Any thoughts?
0
