Bone Mets Thread
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Welcome Annie,
This forum is a great place for support and advice...and hope. Many of the ladies here have many anniversaries with slow to no progression or even having no evidence of disease...and that includes young women who have gone through previous treatments. The bones mets treatment itself has had mild or no SEs for me. It seems that for quite a few, this becomes more of a chronic condition that is manageable. We all hope for that and it does happen! (My onc team at NorthShore in Chicago may know about a similar situation, too. I have an appointment next week and will ask them and let you know.)
This group REALLY helped reduce the fear factor for me in those first few months! It can take a while to establish a treatment protocol anyway and your doctors will be providing you with some good options throughout your pregnancy. You have a wonderful event coming up and we will all be cheering for you!
Kathryn
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Annie, what an awkward situation you are in! What is the earliest they could do a safe cesarean? In the meantime, can you do some alternative therapies or supplements that wouldn't hurt the baby and might slow down the progression? I'm thinking Budwig FOCC, CoQ10, curcumin, indol-3-carbinol, things like that. Some of these elements are even under study by the medical and scientific communities, so it isn't all snake oil.
Oh, and lypospheric vitamin c
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Annie, There is a facebook group that you can join as well. It's very informative. You have to send a message to join. They screen everyone. If you don't want to join, I'd be more than willing to ask if there is someone in your situation. There are over 1,000 members. Let me know. It's called The Closed Metastatic (Advanced) Breast Cancer Support Group"
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Welcome to the group Annie! The ladies here have a wealth of knowledge and a ton of support!
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Annie, welcome and so sorry you have to be here but it is a great place for information, compassion, humor, and understanding. I have sent you a PM with some information I have accumulated over my 15 months with MBC and my 10 years with BC. Hope it helps. Hugs and hope.
Myra, hope you are doing well in the hosp. Resting and testing! Please know everyone here is waiting for your return home and back on the board. So glad your husband was home with you and found you. It must have been frightening. Good to know you were able to post from the hosp bed.
Momall, I'm hoping your daughter's scans indicate no disease progression, that is the first step in getting to decrease in metastatic activity. Glad you will be able to actually review the scans with the rad. I get to look at mine every 3 months. Be sure to ask all the questions you can, don't hold back there are no dumb questions in cancer treatment. It's OK to ask for a second opinion too.
I revel in reading about everyone's good scans and blood work, please keep posting!
On that note, my blood work on Monday was ehhhh. No change in my CBC numbers still pancytopenia but, my hemoglobin only went down one gram since my last transfusion which was 18 days ago, before this month it would have been 2 grams down and we'd be scheduling my transfusion. So, having another CBC next Tues just in case the Xeloda drops it. I head to St Thomas next w/e for some R&R. If need be i'll get a transfusion right before i board that plane. Platelets dropped to 40,000 but I've been way lower so no worries. Just can't be too klutsy and fall.
Wish I had the memory to address everyone individually but I have CRS (can't remember s**t) and I'm old.
Hoping to keep up with this thread a little better. Seems if I take a tylenol my reading headache takes longer to come on.
Best to all. Here's to NED or NAD in 2016.( I'll settle for "stable")
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Annie you are indeed going through a very hard time, i did see on the internet not long ago about someone that gave birth safely in similar situation. If I find it i will post here.
Rnsparki -thank you. What smart thing could I ask the Rad tomorrow, I would love input. My hubby is coming along. Re- infusions, In my latest book that I read by Dr. Laura Lieberman she works in MKCC, and was dx w lymphoma, so when they wanted to give her a transfusion she writes that she asked for DARBAPOETIN. (aranesp)< i don't know if you could have it, but it worked for her, and she feels she beat the system. The book is called "i signed as the doctor"
Just spoke to Onco again, he will start on Ibrance, probably with Letrozole. I told him we feel that maybe we should move on to another tx, but he is the one that really has the knowledge, he is like: don't do this to me, you know her better than I do, and I believe in instincts. So I gotta man up, BE STRONG again, bcs the doc needs me too. Love it. Gd help me!!! I pray he should guide me to the right way.
Any tips on this tx, i'd love to hear. Love you guys.
Hope Lynne is doing well, she hasn't checked in. I AM addicted to this place, you guys are awesome!
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Annie, I'm so sorry to read your story. I have no advice for you other than if you have to join this shitty club of ours, this is the absolute best group of women! Please post whenever you feel, good or bad, we're here for you. ((hugs)) Dee
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Hi everyone. I haven't had a chance to check in for 4 days, and I have to catch up on 6 pages of postings. Boy, am I behind. Things have improved for my DH, and he should be going home in 3 to 5 days. We are just waiting for the Coumadin to reach the appropriate level in his blood. Things have been hairy. As you know, he suffered internal bleeding due to excess heparin after his surgery. The bleeding caused damaged to his only remaining (partial) kidney. His creatinine level has been dropping, and we hope it continues to go down since it will mean a lower stage of chronic kidney disease. It has dropped enough to indicate that he will have enough kidney function to lead a normal life under the monitoring of a nephrologist. This is great news. That episode was followed by very rapid heartbeat (167) caused by dehydration. He has been put on a beta blocker and we will have him evaluated by a cardiologist after we return to NH. Once that was taken care of, he turned very yellow. He had an MRI and it showed that his pancreas was inflamed and compressing his bile duct. The inflammation was caused by the bleeding mentioned earlier. He had an endoscopic procedure to place a stent in the bile duct. He will have the stent removed in 3 months. The procedure worked, and his bilirubin fell from 16 to 3 in just one day. Goodbye jaundice! Yesterday he was diagnosed with a UTI, probably from having the catheter for so long. That is easily taken care of by antibiotic. Yesterday he started on solid foods, and he is walking around. The good thing that has come out of all the drama is that neither of us has had time to dwell on the kidney cancer that brought DH to the hospital in the first place. We now appreciate every day we have.
I will check out of the hotel in the morning, spend the day at the hospital, then drive home to NH. I have an onc appointment and Zometa transfusion on Friday. I postponed it last week when DH was in ICU. I will return to Boston in the afternoon and spend the rest of the day and evening at the hospital. I will drive back and forth each day until DH is released. It's hard to believe that he will have spent almost 3 weeks in hospital. It will be so good to get him home.
I have missed you all and will return on a more regular basis soon. I will be a better poster then.
Have a good night everyone.
Lynne
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Hello everyone! I have been absent for a while now. I just finished reading the thread. Feeling very happy for patty and lover !! You girls rock!
Terre- I love your house! It really looks serene! I have always lived in the city, but have longed for the rural lifestyle!
Dee- I love painting! It's a great way to deep clean and change a look very inexpensively! I'll post some pics of some different painting projects.
Mom- keep hanging in there. Dani will have some regression soon! I truly believe that!
Myra- I sure hope that you are ok! Very scary stuff!!!
Lynn- I have had you and Dh on my mind so much! My warmest hugs coming your way!
All of the new members, I haven't been around too long. But can tell you that things get better fast! Once you are on a tx, things just start falling into place. The dust settles and you adjust to your new normal. Cancer sucks! But it really is quite livable. Your going to be ok. These ladies are so full of encouraging stories, wisdom and are truly wonderful people. You will feel better soon, I promise!!
I'm sure that I must have forgotten some, but I do love you all!!
My mom and I are back from our trip. We had so much fun!! We are going again in a few weeks!!!
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Welcome to the thread, Annie. Sorry you have to be here. I don't have any direct experience for your situation, but have fingers crossed for you and the new baby.
Lynne - wowsa. He's been through the wringer. As have you - hard when your partner's going through that!
Dee - I'm looking at pale gray for the walls and super bright white trim. I have a dark gray, a very pale yellow and a slightly darker yellow for accent colours. May add in some other/additional accent colours at some point in time, but the house is so colourful now, that I just want it to be a bit more of a blank canvas.
Chelle - welcome back! Glad you had fun!
Kathryn, rnsparki, mil, txmom, Cristina, Deanna, momall, Rachel....and everyone else (I have CRS too)....sending hugs.
Terre
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Please help. I met with the RO today and she ordered an X-ray. It shows that the area around the tumor of my knee is degenerating and I'm at risk for a fracture. In August there was not a sign of anything wrong. I'm not in much pain at all. Intermittent when walking and definitely does not stop me from doing all the things that I want to or need to. Is this normal? I am going to meet with the ortho oncologist to decide whether surgery to put a pin into the knee is necessary along with radiation. Has anyone had a pin placed in the tibia or any other part of the body for preventative measures. Please share your experiences.
Happy 2016!!!
Karen
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Hi All!
saucychiq, I'm sorry but I don't have any advice for you, but I'm sure there will be some for you in the morning.
Terre, I have pale grey walls with medium grey trim which is a bit different from everyone else & while I like it, I'm usually a big colour person, so I decided to go with a dark charcoal for a feature wall behind our bed. I'll post pics on Friday.
Chelle, do post some pics of your projects. I love to see what others are up to.
Lynne, I sent you a PM, but in case you don't see that... I'm so happy that you got some good news about your DH & hope he improves everyday. Please take care of yourself too.
MomATT, no advice, just best thoughts for you & Dani.
I need good thoughts for my bone scan tomorrow. I hate these bloody things, I'm so claustrophobic that I need 2 ativan just to get in that stupid machine & then I have to wait 2 weeks for the results. I'm very worried this time, I've been having weird headaches with a phantom smoke smell that I can't shake, I'm worried it's gone to my brain. I have my TM's in a week & they are very accurate for me so we shall see.
Hello to everyone else on this thread, cheers, Dee
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Good morning nkafies. Bg
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Lynn, I'm so happy to,hear that Dh is doing well and you can finally go home and move on. I'm sure that there will be more adjustments and things will fall into yet another new normal. You can both spend some quality time with your beautiful little Scarlett.
Dee- good,luck on the scan! Ill try to get some pics posted
I also have an onc appointment and zometa infusion in the morning. I had such horrible se's last time. I'm a little nervous. I love all of the new avatars! Here are some pix from my painting frenzy, as well as a pic of me winning the big bucks last weekend. I love you all!
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chelle. Love the pics. You look great ! Great smule
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Thanks Patty! You look great too! I bet that you have a very cute southern accent to go with your tiny adorable physic. What part of Arkansas? I have visited Texarkana many times. My great grandma was there. I was a Texas girl, before I moved to the high country. Are you up with an aching back? I am. My pain meds are getting switched up tomorrow. Do you take any? Chelle.
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Hi Saucy, I haven't had anything pinned, but I do have four titanium screws in my spine (2 in L3 and 2 in L5) and a couple of bolts connecting them. It was microsurgery...just four little 2 inch scars. They have to move muscle out of the way, so you get some muscle pain after, but it eases off pretty quickly. They don't want you to take ibuprophen right after, so I just took Tylenol 500 mg for a week. They gave me codeine, but it doesn't do anything special for me so it's all just sitting in my pantry. I've never felt anything in the bone. Move around as soon as they tell you it's okay. You recover quicker. They did the rads on week five, and I was completely mobile by then. I think I could have been back at work that week if it wasn't for the rads. I do get some odd creaks, but the orthopaedic surgeon said that's normal.
Now my CT scan technicians refer to me as bionic
See, the radiation can weaken the area before it builds back up again when they kill the cancer, and it's much healthier to avoid a fracture rather than having to heal from one. I wouldn't worry too much...people get knee joints replaced all the time, so knee surgery isn't unusual. And you don't have to worry about radiation going through anything that will make you sick.
You don't have your diagnosis and treatment information listed. What are you on? Are the considering a new treatment?
And what type was your initial lump? I've had some knee problems lately and my onc told me with absolute certainty that it was NOT a met, without any scan, xray or examination. I'm wondering if I should be more insistent. But a woman I know also said that different breast cancers go to different locations.
[edited because I forgot an all-important "not"]
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Morning Patty...we should have a coffee at 3:00 am!
Beth, enjoy your well deserved vacation in St. Thomas.
Lynne, Thanks for checking in and good to hear that your dh has turned the corner. Remember to take care of yourself as much as you can and good luck with Zometa on Friday.
Chelle, Your rooms are so pretty and you look so happy in your photo!
Dee, Good Luck with your scan. Hope the ativan helps you get through more easily.
Milaandra, Ask your onc if the pain in your knee is from Xgeva. When I had my severe reaction, my knee swelled up and I've had pain ever since. We concluded that in my case it was Xgeva, It is listed in SE's that musculoskeletal reactions can occur.
Momall, There is an Ibrance thread that you may want to check out.
Welcome to Annie.
Good day to all. This post is getting too long!
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Lynn, you sure have been through a lot the last few weeks with your husband! Glad to hear he is improving! Chelle, love the colors you picked, the rooms look beautiful! Momallthetime, I have been on Ibrance for 10 cycles now, it has been a very effective treatment for me. Tumor markers have gone from 203 to 44 during this time. Easily tolerated, some drop in blood counts which were tested weekly in the beginning. Some fatigue in the beginning which is improving as time goes on. Wishing Dani the best!
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Hi Lindalou, I never thought of it being from Xgeva. I assumed it was from the Tamoxifen. It would do much good to ask the onc, though. The chemo onc blames everything on Tamoxifen, including side effects that even the makers of Xgeva admit to, like my eczema patches! LOL!
My main onc agreed to reduce my shot to once every three months, so maybe that will help. They say this stuff stays in your system for a couple of years, though, so I don't know if a reduced schedule will reduce the stupid little side effects I have from it.
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Lynn this must have been a very difficult time for you I'm so happy your guy is stable and the treatment is working. Getting him home will be fabulous.
Dee good luck on your scan I will be keeping everything crossed for you that all turns out well. We all need some good news and I'm sure it will come from you. The waiting is the worst thing two weeks is an eternity.
Annie I'm sorry you find yourself here but you will find this group really cares and helps. I think the idea of starting a new thread is a good one. Sending virtual hugs to you from Canada.
Have my bi monthly oncologist appointment today . Wonder what bits of enlightening info she will have for me today. Been six months since any pictures were taken of this old body so I think that will be my main concern. Hopefully she dials down the negativity somewhat my hubby is here so I have some backup today.
I always have you ladies in the back of my mind ( and gentlemen) and in my heart. I'm saddened that we are so many but we are strong together and that's something.
Wendy
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Hi all! Just wondering whether or not any of you have experienced GI issues when your bone mets are progressing? I'm asking on behalf of my mom. It seems that even before the scans pick up her bone mets progression her body experiences symptoms. The onc actually finds her symptoms more reliable than CT/MRIs (they don't do PET here) these days for her bone mets. She begins to feel pain in various bones and as the progression worsens she also becomes anemic and loses her appetite and can only eat a very small amount before she feels full.
Has anyone else had this?
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Thank yo all so much for the wonderful welcome. I am so glad I joined this group - I can already tell it is full of strong, beautiful women! Reading all of your comments, stories, hope - today already is much better than yesterday.
For those who asked, I get all of my care at the U of Minnesota. It is a wonderful academic center and the breast center is fantastic. I am in good hands. We don't have family in the area (we moved here in 2012, when I was 8 months pregnant with my first, for my job and basically since we've been here I had a baby, got cancer, worked for a while, became pregnant again and now have cancer again). It's been a "productive" 3 1/2 years! Having said that, we have made some great friends and have a big family/friend support network who come here all the time so we are never alone.
I am meeting with the oncologist and MFM tomorrow so fingers crossed - should have a plan then and start treatment next week.
Thank you again for welcoming me to this group - I look forward to getting to know you and wish everyone great health and happiness in the New Year!
Annie
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lindalou. - well I don't drink coffee or any hot liquids really. How bout u have coffee and I'll have sweet tea at 3am. ?
Lynne - so glad to hear your dh on mend. Sure your hands have been very full.
Wendy- hope you don't get negativety from mo today or any other day. Boo. Is there someone else you might go see ? Is it in your bones only still? Yes we are stronger together. Read some comments from some stage IV threads to your dh on the trip there and back. Surely to encourage him and you.
Maybe someone can post a link or two for Wendy for some inspiring threads. I don't know how.
Chelle. - lol. Yes on southern drawl. I am from northeast Arkansas. About 4 hours from texarkana. So how did a Texas girl get to Colorado? Brrr. Quite a climate change and probably culture too ? Hope your change in pain med is just what you need. Mo and I have tried many pain meds at many different doses but still haven't found that perfect medium. I either still hurt or am not hurting but sleeping then nauseated . can't find an in between. Still working on it because it is important for my daily life.
Hugs to all I missed?
BTW. : anyone heard from Mra ? Hope she is healing well and simply has no internet access at the hospital. Mra , if u are lurking. , know I am thinking of you. Wishing you a speedy return home sweet home. Everyone knows there is no rest in a hospital.
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Lynne, so glad to hear that your DH has turned the corner and is improving rapidly. That's great news! As I read your account of his recovery, I couldn't help but again marvel at the tremendous capacity our bodies have to heal and rebuild. Plus, it sounds like, thankfully, he has had top-notch medical care. I hope the drive home to see your onc today isn't too far and the roads and skies are clear for you.
Karen, I'm a bit surprised that your RO is basing a recommendation for surgery on an x-ray. Besides, although she is probably very experienced, I'm thinking that should be the call of an ortho surgeon. Have you had an MRI and seen an ortho doc? That would be my next step, and based on those results, I think you'd be much clearer on any need for surgery. And I am also highly in favor of second opinions before doing anything invasive, unless it's an emergency situation. In other words, if you can see two ortho docs -- unless you're at a major medical center where they do this type of thing all the time for patients with bone mets, or you have a ortho doc you know is top notch and experienced with that type of surgery -- then a second ortho opinion wouldn't hurt either -- just to be sure you know all of your options. But as Milaandra said -- it's far better to address it preventatively than wait until it fractures. And once fixed, you should be better than new.
Good luck tomorrow, Dee! I hate that you have to wait 2 weeks for results! That's unnecessary torture! And what's with that phantom smoke smell? I've never heard of that. Have you tried researching it?
Chelle, love all the photos! Was the casino pix in St. Thomas? What fun! Are you usually lucky? I think some ppl just are when it comes to gambling. I think it's a mental thing. And I love the chandelier in your bedroom, as well as your choice of paint colors.
Good luck today, Wendy! I'll be looking for an update!
Golden, yes, I would think if the progression was active enough, many people would feel lousy and not need a scan to verify that something is going on. I also have a personal belief -- probably totally unscientific and unproven -- that IF something is going on, a scan can exacerbate it, which is one reason I'm not a fan of constant scanning.
Have a good day, everyone! The rain has finally stopped here, but boy, I sure notice a difference in my hip when it's humid vs. our usually extremely dry weather. Hugs to all ~ Deanna
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Hi ladies,
I had my MRI yesterday and it turns out onc wanted my cervical, thoracic and lumbar spines with and without contrast. That's an incredibly long exam and I knew I couldn't do it. I declined the thoracic and lumbar and only did the cervical with and without contrast. It wasn't very long but I was in so much burning pain in my lower neck. It was awful. I called my onc's office today and spoke to my nurse about what we should do. The pain is definitely increasing. I don't think I can tolerate the 2 other MRIs and I asked if there's another shorter scan. I had no problem with the CAT scan, even w the nasty drink and contrast. The pain is not well controlled, Patty, I totally get you. I am completely overdoing it with my subsys pain med, short acting. I take the oxycontin exactly as prescribed but still get tons of breakthrough burning pain. The only relief I get is with the subsys but I am now running out bc I've been taking way more than prescribed bc my oncologist told me to make sure I'm comfortable and not in pain. I did leave a message with pain management about what I'm doing and I also made an appointment with them on Jan 25th. I also had copies of my CAT and MRI sent to my pain management doctor as well so I have a backup if the scan is indeed worse. I could use some support and prayers, which you ladies always provide. The good news is my sister will try to visit me Jan 30th which is my birthday.
Annie- welcome to this thread! I was diagnosed initially when I was 35 weeks pregnant and was induced at 37.5 weeks and started chemo a few weeks later (basically about 1 month after diagnosis). I had had a lump for a very long time so it's probably my own negligence which has led to my mets diagnosis. My mets were diagnosed end of April 2015. I am glad you found this thread as there are some very knowledgeable and supportive women here.
Lynne-finally glad to hear from you and that your DH is improving. I'm sending vibes of healing to both of you and please take care of yourself! That is a lot of driving back and forth!
Chelle- beautiful rooms and paint jobs-love those colors, especially the sheets in the 2nd bedroom. And I love the shape of the ceiling and the chandelier in the first bedroom.
Dee-good luck with your scans. I too hate you have to wait that long, seems archaic. I will wait probably until Friday or Monday, we'll see.
Wendy-KUP about today's appointment!
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Sweet ladies. I am home and have been reading. Doing my best to straighten my MEDS and Tx out. Hospital did more than oded me. Will get in touch when I can. I apprecise u all so much for all u care. THANK YOU. Much love, Myra.
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Myra, so glad you are home and hope you are feeling better.
I'm feeling gutted over Holley Kitchen's FB post.
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Myra,
So glad you're home. I went back to school this week, so am running at warp speed, as is usual when school is in session. My best wishes to all and hope everyone is as well as can be.
Must read that Holly Kitchen post, but not exactly looking forward to it.
Caryn
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Oh my... I just read Holley's post when after seeing your comment, txmom. I certainly didn't see that coming -- not this quickly. Damn!
So glad you're home, Myra! Is your son there with Mallory (aka the BEST medicine)? Hope so!
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