Bone Mets Thread
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My wife's scans (CT + MRI) are scheduled for today. She has no symptoms but TM is creeping up slowly for the last 3 months (stable up to Sep 151 -> then Oct 165 -> Nov 175 -> Dec 200). So we are bit worried. Please pray for her.
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Wendy3,
I went to Florida two weeks ago looking for birds to photograph and every day I cried freaking out about this progression. My husband said to me, enjoy your days that are good and enjoy getting away from being home thinking about this constantly. I tried, but it got me every day! Hope you feel better, Deanna and Z and Kaption always make me feel better too. But do enjoy yourself, I loved the snake you found, that was really beautiful. I'm sure I could capture a lot of beautiful birds down there right now. Send some photos along and enjoy yourself the best you can! ((Hugs))
Anita
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Thanks Wendy, Anita and Gracie.
Anita, are you a professional photographer? I did some amateur photos for a while and sold a few matted prints and photo cards. I have quite a few Florida bird pics since that is our favorite winter spot.
And, your husband sounds very wise!
Hope you are all feeling better
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letmywife...prayers for you and your wife today. Let us know how it goes.
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Kaption,
I'm not a professional photographer, although I have all of the equipment. I started doing underwater photography and traveled all around the world where the good stuff is. My favorite places on land are the countries in Africa, which I have been many times. The wildlife is amazing and the variety of birds is incredible. I hope I can still do this, but for now since we live in Upstate NY, I will be on my quest for Snowy Owls and Rough-legged Hawks. I make calendars and have matted several prints.
Yes, my husband is very wise. Unfortunately he is a Radiologist and happened to be the one who did the x-rays and bone scan and found all of my problems. I felt so bad for him to be the one to diagnose me, but he has now handed it over to other Docs so he can handle the stress of it. He sees so much good and bad, and always is positive about how ladies and men live with these conditions for a long time and is hopeful for new meds to come out every year. So that is always encouraging to me.
I hope you are doing ok, too. We all have to keep hoping and this forum has been more help from so many woman who are dealing with the same issues.
((Hugs))
Anita
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Anita,
Your travels sound amazing!
Yes, hoping for all of us!
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hi all!
hope everyone had a lovely holiday season & I wish all of us the best for 2017!
I finally had some results from my scans & TM's on the 20th, though my chart was nowhere to be found so I don't have any details yet. My bone scan showed what the radiologist thought may be new mets on my rib, however my MO looked at the bone & CT scans & she feels that it is likely damage from my reconstruction. It kind of makes sense as I have had that particular pain ever since then. So at this point she is saying stable because nothing else is coming up. My TM's have always been very accurate for me & they are still in the normal range. So onto cycle #7 for Ibrance.
I'm not caught up on all the pages I missed while away, but I will read them all even if I don't comment. To those who have seen some progression or waiting on those darn scans, I get it, well, I guess we all get it. ((hugs)) cheers, dee
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Dee, that's great news!!! Happy to hear that
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Dee, so happy to hear!!! Happy New Year, indeed!
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Dee, WOOHOO for stable! Onwardand upward to cycle 7. It is always good to hear from you.
Hugs from, Lynne.
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Congrats, Dee!
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Excellent news Dee!
Has anyone heard from Momallthetime? And from Patty? I texted Patty last week but she hasn't responded.
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Dee, doing a happy dance for you! Stable is awesome!
Linda, haven't seen a post from momallthetime or Patty in quite awhile. I hope someone will check in soon.
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thanks everyone, I appreciate all the support! cheers, dee
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Dee - Fantastic News! Onward and upward. So happy you had a good scan.
Wendy - The technician gasped, cringed and put her hand over her mouth reviewing the mammogram that found my cancer last December. My flight to Peru was two days later. That technicians reaction was pretty much all the "data" I had on my condition getting on the plane. I cried and shook the whole trip, my mind racked with confusion and doubts. When I got back, of course, everything I feared became true, maybe worse. But all that stuff is still true now and I am fine. I regret losing time in Peru to a freak out which did nothing to change the outcome.
FWIW, I think you'll come back to good news not bad.
Sending you healing thoughts. Time for mediation and whatever you have in your toolbox that grounds you in the present.
Pura Vida!
>Z<
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Deanna, I have weird neuropathies quite a bit. Sometimes they just pop up out of no where. I especially hate it at night because it interrupts my sleep. It's part of the chemo and even hits on off weeks. B6 helps a little. Hopefully others will chime in.
Lita
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I had CT scans of chest, abdomen and pelvis this week and I "think" it's all good news...there's just quite a bit more mentioned in these reports than in my last set. I think my takeaway is that the bone mets are all healing (although we seem to be finding new healing bone mets with each scan) and I'm seeing some radiation injury to my lung (rads ended in August and no injury was mentioned in last Chest CT). So for now, all of this is still just in my bones, I'm so incredibly grateful and I guess the treatment regime is working. We didn't do a bone scan since I had one 3 months ago and they like to do them only twice a year - do you all weigh CT or bone scan more accurate for tracking bone mets?
The abdomen and pelvis results were:
ONCOLOGIC FINDINGS:
History of metastatic breast cancer with:
- Stable appearance of a left acetabular sclerotic lesion.
- A subcentimeter sclerotic focus in the right femoral neck, unchanged since the prior study, but not definitely identified on PET/CT dated 12/16/15. Stable additional subcentimeter sclerotic foci in the right proximal femur, left superior pubic ramus, right hemisacrum and bilateral iliac bones, nonspecific, may reflect bone islands.
- No evidence of new or progressive disease in the abdomen or pelvis.The chest results were:
History of metastatic breast cancer status post left mastectomy, axillary lymph node dissection and radiation. Interval increase in left breast and axillary fat stranding and skin thickening, likely radiation injury.
Lungs: Interval development of subpleural confluent nodular consolidation, consistent with evolving radiation lung injury in the left upper lobe and lingula, underlying the region of the left breast.
Osseous structures: Stable sclerotic focus in T5 vertebral body.LYMPH NODES: Stable, subcentimeter mediastinal lymph nodes.
OSSEOUS STRUCTURES/CHEST WALL: Status post left axillary lymph node dissection and left mastectomy. Stable left humeral head, left acromion and left clavicular sclerotic bone islands.IMPRESSION:
1. History of metastatic breast cancer status post left mastectomy and axillary node dissection. No definite evidence of new intrathoracic metastatic disease or recurrence. Stable T5 vertebral body sclerotic metastasis.
2. New left chest wall skin thickening and edema, likely representing radiation changes. Correlate with physical exam.
3. New left upper lobe peripheral consolidation, compatible with evolving radiation lung injury.0 -
Sounds like a great scan! They also mention different sites each time in my scan reports, saying widespread extensive bone mets some sites represented are.. I figure they don't list each site all the time, in my case just about every bone in my body.
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Dee that's great news I'm doing THE dance as well for you, you so deserve this . Lynne and Z thank you I know I'm being a big baby and messing up my vacation...so dumb. The next three days I will do for all of you. You are all here with me in my heart. Patty please let us know how you are Momallthetime how are things going?
Found this yesterday great words for us all.0 -
Love the photo Wendy. Yes, continue your vacation with cancer out of your mind as much as you can. It can take a backseat for awhile.
Dee, So happy for your stable news.
Kaption how are rads going?
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Lindalou- I go for treatment #2 of 10 today. Will be done on the 19th. This should be an easy round since it's not near any organs. I'm grateful they are acting quickly to prevent any possible break.
I thought the rads would eliminate me from the possible clinical trial- but they are still interested. I'll have CT and bone scans done next Wednesday in prep for that. So, we'll see. (Two scans and then rads. I should be glowing that night!) The trial is about an alternative dosage for Xeloda.
It is hard for all of us to be "in the moment" when we are doing pretty well. It takes real effort to push away those "what's next" thoughts and not waste the relative good period we are enjoying. Keep trying!!
There is a board for Patty. She has not posted but some on there get texts from her. It's been a difficult period for sure. I also have not seen momallthetime for a long time, but I'm not on many of the boards she's on.
Hope everyone is warm and finds joy today!
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love the photo, Wendy! I hope you can enjoy the rest of your vacation. I know it's easier said than done. It looks gorgeous!
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Dee, so very happy to hear stable! That's the way to start 2017...
Amy
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Great news on your scans, Dee! And you too, Jen! YaY!!!!! And as far as which scan is more accurate -- as my UCLA onc says, they see different things. The CT shows the damage to the bone, which is why it takes experience and knowing your hx to figure out if it's increased damage vs. healing. The bone scan shows cancer cell activity. So you can have little or no uptake or activity (like my last bone scan), but still have a lot of residual damage to the bones.
Wendy, that beach looks so peaceful and lovely. Are you staying in a cottage, or are there some hotels or condos we can't see in the photo? And Happy Anniversary -- which I saw on FB!
Lita, thanks for the tip on B6. I'll definitely take some extra B-Complex and see if it helps. I had another episode and after a bit of research am questioning if it's actually Raynaud's, which is more brought on by cold. Either way, I'm sure the extra nutrition will help.
Today is my pin cushion day -- Faslodex, Xgeva, labs. Hoping I get one of the better lab techs. Sometimes I ask if I see my favorite one. Otherwise, I hope for the best!
Hope everyone has a good weekend!
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DLB,
I got chummy with the front desk team so I could ask for more senior phlebs. I also ask for "baby needles" with is a higher gauge/smaller head so less painful prick for blood draws. Not so easy on the infusion as some of the meds need the roto rotor needle to accommodate the thicker viscosity.
Myself, am in a bureaucratic Merry-go-round regarding who will prescribe myend of life meds. I have to see the hospice medical director, who will refer me BACK to my med group head, who will refer me back to my MO. Oh vey....also found out through a nurse friend at a competitive med health group that the process takes 6-8 weeks. When I'm have a low energy/otherwise bad day, that seems a long way off. When I'm having a good day, like today, I'm fine with it. And it'll be the way it is no matter how I feel about it, so may as be fine with it all the time.
The hospice chaplain, nurse, and MSW all visiting today. Then off to lunch with a couple who are really good friends one of whom was recently diagnosed with ALS. And I think I have problems…
Love,
Patti
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Patti - I am glad you are filling your days (mostly) with support and good friends.
Jen - Thanks for sharing your scan results. Helps me learn to read mine. I see lots of healing injuries but all stable. Congratulations.
>Z<
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hi all!
Wendy, do enjoy the rest of your trip. If only you knew what the weather was doing back home!! It's ugly out there! Here's our friends place when we showed up on Tuesday, with DH shoveling the driveway before they got home from work. For those who don't realize, Vancouver rarely if ever gets any snow and this has been here for 3 weeks now.
Jen, so happy for your news, like Amy says, it's a good way to start 2017! Hope we end it the same way.
Deanna, good luck today with all your pincushion activity. Kaption, good luck with your continuing zaps.
hope everyone else is having a good day. I'm staying home by the fire, it's started snowing again, ugh!
cheers, dee
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Wendy - That warm beach scene looks marvelous. Costa Rica can be your happy place!
Deanna - I was taking 2-4 200 mg ibuprofen a day. The dose wasn't that high, but I took it for 13 months.
Dee - Great news on the scans! That snow looks SOOO cold!
Jen - So good to see your scans went well, too!
Patti - Getting together with friends is a great way to take your mind off other things! QOL is the most important thing I think.
Evidently, getting a cold isn't a simple as in the olden days...three days in and still feeling crummy. I do think we should all get a "pass" on other illnesses while dealing with MBC. I'm going to follow Dee's lead and turn on the fireplace and maybe do something completely non-productive like watch a Hallmark movie.
Concerned about Patty, Steelrose and Momallthetime. Rose valley is also having a rough time. Wish there was something we could do for these friends.
Hope you all have a warm and pain free weekend!
Kathryn
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Patti,
Yes indeed, it does take about two months to get the pills lined up, which is what I've read. Others have told me that at SOON as you get linked up with hospice, get the end-of-life pill order going. As you know, paper work has to be filed, you have to see TWO other drs to verify your situation and get your psych evaluation.
When I'm put on hospice, I plan to ask for the pills straight away because of the time it takes. There have been people who passed weeks before they got their pills, sadly.
Thank God we live in a state that allows us to end our suffering with dignity and peace. No one should have to go thru what coopdizzle (another thread) and her family went thru in late November. Her husband documented what they went thru on her facebook page. It was brutal, and it was hard for me to keep reading after a while. Sadly, Texas (where she lived) is not going to pass any "Death w/Dignity" legislation any time soon. Coop did not want to uproot her family and move to another state that has DWD because of her husband's job and the closeness of family/friends that would provide stability for her sons after her passing.
That really makes me sick. Those of us with severe mets KNOW it's going to be agonizingly miserable at the end. Unmitigated suffering isn't going to "purify our souls" or make us better individuals in the eyes of God as we go thru our dying process. He already loves each and every one of us. Our decision should be left up to us. I applaud the doctor who wants to change the name from "Physician Assisted Suicide" to "Physician Aid in Dying" because we are NOT committing suicide, we're ALREADY dying!!! We're just speeding up the process.
Okay, time to step down from my soap box.
Lita
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My wife's prelim results came back. The bone mets are stable but there are some spots in the liver. Final results are still not out. She is totally devastated. Will talk to doctor next week about options. I am feeling very very low today.
Ibrance worked for no more than 6 - 9 months then.
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