Bone Mets Thread
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Welcome Purple! This a great place for knowledge, support and knowledge. Wishing you the very best.
Amy - Warm prune juice. I heat it up in the micro-wave and it really helps me along with mild laxative and stool softener.
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PurpleMinion, Welcome to the Bone Mets Thread. I think that we already met in another thread when you helped me out by posting some of the items from Bon's deleted lists. It is good to have you here. As others have already told you, there are many wise, wonderfully supportive women here. I was happy to read that you are having your dental work done before you start Xgeva. I am sorry that you have had such a rough time since Jun, no break! Hopefully, your new treatment plan will begin to knock down those nasty cancer cells.
Linda, That crabapple tree is breathtaking. It is perfectly shaped and so full with flowers. The setting is pretty, too. It looks like you have a lovely garden in the background. Oh, and I have to mention that beautiful blue sky. Yesterday was the only day all week that we had any sunshine here. I have no energy without sun, so you can imagine how perky I have been this week. My DH is doing really well. He managed to go through the entire month ogbApril without any hospitalization, yay! I think (and hope) those scary times are over. He is eating very well in fact, he is really enjoying it. Unfortunately, I have joined in his eating craze and am beginning to see a few pounds creeping onto my body - oops! I have to start exercising again.
I noticed that Patty posted to the Patty thread. It sounds like things are still tough for her. Patty, if you are reading this, you remain in my thoughts and prayers. I hope you bounce back soon.
Has anyone heard from Bosco? If you are lurking out there, Bosco, we are all hoping that you are okay. There is no need to post if you are tired or not feeling well, I just want you to know that we are here for you and that you are in our hearts.
I know we are all concerned about Myra. I hope she is okay.
Lynne
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Hello all!
Happy Naked Gardening Day!! Not happening at my house, I like my neighbours!
But on a serious note, if any of the Canadians on this thread got their saliva kit for the MBC project, please see the thread about it. Do not send it in yet, they didn't realize it would cost us $16+ to mail & would have to have identifiers on it (your name & address) and a customs declaration. I emailed them yesterday & they are going to figure this out for us. They don't want it costing us $. I will post the results of this next week as soon as I find out.
Have a good weekend & Happy Mothers Day to all the moms out there. cheers, dee
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Dee,
It is good to know that the MBC project doesn't expect you to pay the return postage. I returned my spit kit yesterday. I hope the research yields some truly great results.
Umm, I can just imagine how quickly people would flee if I were to start gardening naked! It's a bit nippy out there today, too.
Yesterday my 1 1/2 year granddaughter was helping me in the gardens. She decided to sprinkle mulch all over herself as if it were pixie dust. This picture was taken after some of the mulch had fallen off. I couldn't help but wonder if I look like that to her after I have spent a day in the garden. (She was going to sprinkle her 4 month old sister with mulch, too, but she was stopped before she could do it.
Lynne
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Where's the like button for your adorable photo, Lynne?!!!! We all need more pixie dust!!!
I'm in a hurry this a.m. -- leaving to go somewhere w/DH -- but just wanted to share something a friend told me about. It's a website that ranks hospitals. Since medical errors are a BIG deal these days (even bigger than previously recognized per a new study out last week), and something we with mbc can hardly afford, I thought this might interest all of you as well. I haven't had time to check it out yet, but assume it's worth knowing about.
http://www.hospitalsafetyscore.org/Editing to correct an incorrect link!
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Lynne- Lucky you-spending time in the garden with such a cutie pie!!!!!
Babs
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Naked gardening! So many reasons why this won't be happening for me 😜, but I do have my tomatoes planted already. My granddaughter likesto pull weeds and she seems to think my dogs want to eat them. So far,they have been very resistant to weed eating.
I'm glad to hear that the MBC project is being responsible about postage for those outside of the US. I sent my kit back several weeks ago. I hope all of our contributions yield some good data to help us and those who come after us with MBC.
Have a good weekend, all!
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Adorable picture Lynne!!
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I am so grateful to all of the women that share their experience and advice. I am having some serious stress over the upcoming Zometa infusion and learning the results of my bone and CT scans this Wednesday. Trying very hard to be optimistic. Wishing all a Happy Mother's Day
Vicki
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Vicki, it is always difficult to have scans and then wait for the results. I think that the anxiety continues for most of us regardless of how many good scans we have had. Are these the first scans you have had since you began treatment for mets? Sometimes it takes a while to see results of improvement for bone mets. That doesn't mean that healing isn't taking place. It is just hard to identify early healing. I will be there with you in spirit when you receive your results on Wednesday. I hope that the news is really good. Make sure you let us know the results. We are all here for you.
Lynne
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So, brand new to the bone mets club and have questions.
1. How did you first find your bone mets? I recently had a CT scan and they didn't show up, it was the PET scan that found them about a week later.
2. How fast and how many did you have? I had a bone scan in January that was clear and now in May I have mets to pelvis, spine, femurs and scapula.
3. How soon after your mets were discovered did you start a drug like zometa or xgeva (I will be getting xgeva but am waiting a few weeks so I can get some dental work done first).
Thanks!
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Purple,
I was stage IV right out of the gate. I had been seeing a hematologist/oncologist because I had become severely anemic and had severe pain throughout my body. ( A rheumatologist had misdiagnosed these as polymyalgia rheumatica.) The hem/onc did additional blood tests including alkaline phosphatase. That level was elevated and he did another test that showed that the elevated count was originating from bone activity, not liver. He was planning to do a bone marrow biopsy because the anemia was getting worse. A day before my follow up appointment with him, I learned that I had breast cancer. When I told him the news, his plan changed. He called my breast surgeon (I never did have surgery, btw) and ordered a CT Scan and bone scan. Because of the high elevated alk phos count, he suspected bone mets. (Surgeon also ordered breast MRI.) The bone scan showed mets to sternum, manubrium, both humerus, several vertabrae, several ribs, both femurs, both tibias. The CT scan identified only a few of the mets. The bone scan is much better for identifying bone mets. The CT scan was done to find out if I had mets in organs such as liver or lungs. I have never had a PET scan. I have no way of knowing how long I had bone mets before dx since I had never before had any kind of scan.
My onc delayed the start of Zometa until after my dentist was satisfied that my teeth and gums were in the best possible shape. My onc and dentist are both proponents of delaying Zometa or Xgeva , if necessary. My first Zometa treatment was two months after my mbc dx.
Lynne
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Thank you Lynne, that is all very good info, and reassures me that the dental stuff is priority and that waiting a few weeks is OK. You and I were diagnosed around the same time, although I am triple negative so have a totally different treatment plan, I am now wondering, how are you feeling? Have you discussed radiation as an option for any of your bone issues (or are you doing so well that isn't even a conversation right now)? I also have had no surgery and my onc says "unlikely" although I will probably push for it when it is safe because IBC gets in the skin and is VERY itchy and annoying so it would be nice to have that gone...
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Purple, I am feeling surprising well. My pain is gone although lately I have felt some morning stiffness. It is nothing major, and as soon as I get moving, I am fine. Since I don't have any pain, we have not considered radiation. I still see a breast surgeon every three months. She has talked to me about surgery to remove what remains of the tumor in my breast. She said surgery for stage IV is controversial, and it is. I did talk to her about it at length, but because my DH had serious health issues of his own all winter, I did not give surgery serious consideration at that time. We will discuss it again when I see her next month. My onc feels surgery would not be of any benefit and would temporarily upset my great QOL. Time is precious to me. On the other hand, my bs feels that now that the tumor is smaller and is no longer invading the chest wall, it would be easier to remove and, in her opinion, could possibly prolong my life. Of course, I have no idea what would be best for me.
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Purple,
1) I was dx'd stage V right out of the gate. Pain was my first symptom. Bone mets were found mostly on CT and bone scans, however the femur met didn't light up on bone scan. A PET scan discovered it. CT scan would have showed it, but it was from neck to pelvis only. Had only one PET scan when I went for a second opinion.
2) One axillary node met. Bone mets at dx were: femur, pubic bone, sacrum, iliac and rib. Then cervical and thoracic spine mets were found about 1 1/2 year after original dx. All spine mets can be seen on CT scan but some don't light up on bone scan. Have had rads for pain relief to femur, pubic bone and pelvis. Although progression in spine, we stayed the course with same tx as some other mets were improving. Note that bone scan picked up some lesions that turned out to be arthritis on CT.
3) I started Aredia right away. Doc told me about dental work but everything was fine. 2 years later I was switched to Xgeva and continue to have it monthly.
No breast surgery. In fact the primary tumor in breast is so small, it didn't show up on mammo, US, CT or PET scan. Only an MRI picked it up.
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Thank you Linda, super interesting! I also have a bunch or arthritis and degenerative disk disease and degenerative joint disease so this doesn't seem THAT scary (well, it is scary, but I mean I think I know what pain is)... I am just hoping that we can keep my progression confined to the places it is already and not have additional organs involved.
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PurpleM, my bone mets only showed when looking at digestive issues & I happened to mention that a pain in my sacrum was bad & surgeon suggested a bone scan. I get pamidronate & like others here, because it's a bisphosphonate you should get your dental situation squared away. I can't say how long it took, but I know that the met in my arm was there for at least a year before as I was getting xrays of the shoulder etc which found nothing.
I can't remember how long before I started on infusions, but I must have started in maybe June, finding the mets in May. I had my dental appt right away & no problems so I went with the first appt MO had booked. Sounds like you have a plan & a good frame of mind, I'm sure you'll do good. cheers, dee
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Hi all!
I'm sure I've asked this already but I can't remember everyone's answers. I am having a lot more all over pain & being tired. I don't have a bone scan until the 16th & TM's til the 24th. I am worried that I'm at the end of my treatment with arimidex & will have to go to the next one which has horrible SE's. I know I've been doing lots of gardening & painting the house etc, but feel like it's getting worse... thoughts? Does this happen to you? I guess I'm scared that I'm progressing & don't want a new med to screw up our fall trip plans. I know that's a stupid reason to not change meds, but we've been looking forward to this trip & I don't want to be the reason not to go. thanks for any insight, cheers, dee
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Dear Dee,
I'm sorry you're having such difficulties. While I cannot relate to what you are going through, exactly, I can say "don't give up hope" - these were the words my mother said to me when I was so despondent over progression last fall and subsequent treatment. Tearfully she said, if you give up hope then why bother with the rest. This was exactly what I needed to hear. I hope you continue be hopeful that you'll be taking that trip but in the meantime, one day at a time, one step at a time.
Prayers and hope dear one.
Amy
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Lynne,
Your granddaughter is adorable! How wonderful she gets to spend time with you and that sprinkling fairy dust will be a precious memory for you both. Happy Mothers Day!
Amy
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thanks Amy, I appreciate yours & your mothers words.
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Dee, I know how you feel. Every time I begin to feel aches and pains, I fear that they are from progression. I hope that the pain you are feeling now is from all the increased activity. I, like you, am happy with Arimidex and do not look forward to the day that I will have to change to another treatment. Do you know what your next treatment will be when the time comes? I have not yet discussed next steps with my onc because I hope that Arimidex continues to work for many more years. I wish you didn't have to wait so long for the bone scan. Of course there could be other reasons for your symptoms. Have you reported your symptoms to your PCP? Maybe she can do an exam and blood tests. Are there ticks in your area? Is the pain in your joints? Is it worse at certain times of the day? Could it be pain that is SE of Arimidex or Xgeva? I am sure there are many possibilities other than progression, and I hope the the pain is caused by one of them. Even if you do have to change treatments, your SEs could be minimal. You could be fully adjusted to it by October. I think you will go on that trip and have a wonderful time. My DH and I are also planning a trip for October. He made the reservations last week. You and I will both go on those vacations, post photos to this thread, and tell each other about the great times we have. We have to look forward to good things in our futures.
Lynne
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Dee, sorry you have more pain. How long has this new pain been going on? I know you're always a busy gal, but do you feel better if you give your body a break for a couple of days? Has the generic changed recently? Mine has and I can tell you I have more stiffness and aches. Are you talking about the A/A combo? If, and I insist on if there is progression, how about Fas which seems very tolerable with good results? I certainly have a personal interest on you taking that trip LOL! I would hate to miss your visit down here. Praline and I are anxious to meet you! I hope you feel better soon and that the bone scan shows stable results. I get bouts of pain once in a while with no progression. Crazy mets.
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Hi PurpleMinion,
1.) My bone mets were discovered by the radiologist reading the results of my breast MRI. He/she identified an abnormality on my sternum and I was sent for a bone scan. Lesions were found on my sternum, spine, pelvis and rib. After the bone scan I had a biopsy of my hip bone and that confirmed the metastases. I was also sent for CT scans of chest, pelvis and abdomen and some of the bone mets showed up on the ct scans as well. I was pretty much asymptomatic with regard to the bone mets. I hadn't had any pain that I would have attributed to anything other than my age at the time. I was only 52 but I was experiencing typical aches and pains of just getting older.
2.) I don't know exactly how many lesions there were but I would estimate at least 10. Since I was diagnosed Stage IV out of the gate I have no clue how long it took for the mets to develop:(
3.) As has been mentioned by the others responding to your questions, dental issues need to be addressed before starting bisphosphonate therapy like zometa. I had a lot of dental work to take care of so I didn't start the zometa infusions for 4 or 5 months after diagnosis. Then I had the infusions every month for 6 months and then it was reduced to once every 3 months.
Hope this information helps.
Cathy
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Hi Lynne & Linda,
My next treatment I've been told would be A/A combo which I'm not looking forward to. The bone scan is only a week away, it's booked for every 3 months so I'm not sure even if I could get it moved up how much good that would do. I don't have an appt with my PCP until the 20th, but I may have to change that. That's another thing, I'm stressed out chasing my MO trying to get my labs & pamidronate set up. It's supposed to be on the 20th, but she hasn't sent her orders yet. I'm sick of calling her office & medical daycare only to find out she still hasn't done it.
Maybe my feeling like I'm tired is just frustration. I PM'd with Lindalou & she wonders too if I've been doing too much & need to take a break.
Linda, I've had more pain for about 2 weeks now & feel tired & unmotivated. But I really just needed some confirmation that you still get bone pain, enough to have to take pain meds once in a while. I'm probably just fine, doing too much, but just needed to know that increased pain isn't necessarily progression. I'll take a bit of a break & see if my pain & fatigue let up a bit. And yes, I am taking that trip even if I have progression, so look out Linda & Praline, we're heading your way.
And LInda, I do believe you will take that trip. Thanks for your help. cheers, dee
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Dee - I hear your frustration with your MO. I have a standing order for Xgeva and labs every month, so much easier. Good idea giving your body a break to see how you'll react. I have a regular schedule for pain meds (extended release every 12 hours) and use breakthrough dilaudid as required. I tried reducing the pain meds, it doesn't work for me. I'd rather be ahead of it instead of chasing it. I know it will be a long wait for you and lots of time for scanxiety. We're here for you!
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Dee- I'd be so frustrated too if I had your MO! I know you were thinking of switching doctors, is that still happening? In the meantime, can't her nurse set all this up? I mostly communicate w my MO's nurse, not the MO. I'm sorry about the pain, I also would suggest taking it easier. I take pain meds every day, but I am questioning if I really need it that much and I'm going to cut down a bit. I'm more used to taking it than really needing it. I'm so afraid of pain that I take a little too much I think. I think my next treatment would be A/A too, but I actually want to try Xeloda, so I'll probably do that next, as I think it will be faster acting.
Welcome Purple Minion! I was diagnosed with bone mets in 4/2015 after complaining since 11/2014 of neck pain and doing acupuncture, chiropractor, pain meds, urgent care, etc. I've taken Arimidex which failed immediately and now Ibrance, Falsodex, Xgeva and Lupron since August 2015. I get scans tomorrow and the results Friday.
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GG I too understand your frustration with pain and worry. It is something I havent figured out yet. I have been on the A/A combo for 6 months and it has really been tolerable. I liked the idea of streching out the usefulness of arimidex. Good luck to you.
Linda thank you for your thoughts on mother's day. My day was bitter sweet. My husband and son helped me put the garden in. My mother taught me to garden and shared my passion for basil every summer. I did overdo and will have to lay low for a few days but so worth it.
Below is the beautiful lupin blooming in the woods by my house. These are one of my favorite signs of spring.
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hello friends. I've been out awhile. Just struggling to survive and wanting to survive. I've finally had an emotional change. Back to wanting to live. The last couple days have been better then the last couple years. Not sure if the pain is less and I have more energy because the tx is working or because my emotional attitude change maybe both. Either way. I am loving it !!!!
So many of you have become like family and I've certainly still had y'all on my mind and prayers. So glad to catch up and see no deaths. Yea!!!! And no major progressions for any. That's amazing.
Deanna. I checked out our local hospitals on the website you posted. One hospital had a D grade and the other one - which is the one I use - is not listed at all. That's odd because it's huge and they also have locations in Memphis and several states. Not sure if that's good or bad but what an interesting website. Thanks for posting.
Too tired to respond to each for now
Hugs all around
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Yeah Patty you just made my day!
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