Bone Mets Thread
Comments
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Yes!! Now, see! I knew it didn't have to be so long & drawn out. Thank you for this!! I think I love you The Divine Mrs. M!!!
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Divine Mrs. M.,
I feel the same way you so eloquently wrote to Firelady. Your words gave me a boost today when not feeling well. I have a great Oncologist who does as your does scans when I need and in the morning and tells me what is going on before actual report. When I needed lung biopsies and surgery she made it happen within a couple days. I have complications and can't have radiation but she was able to put in place treatment to keep things in tact and even though not NED, I'm holding my own. Xeloda today just has me so tired and stomach upset along with pain, hate taking morphine but today was that kind of day. Reading your post got me up and moving so thank you.
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firelady,
Mrs M is right; you have nothing to apologize for. Being made wait like that, and having to jump through hoops to get the scans and tests you need isn't right.
Here in France, when I have a ct, MRI, or X-ray, I see the radiologist directly after and he tells me there and then what he's found. Then his report is printed out and the images, report and the disc of the scan are given directly to ME. Whoever ordered the test is sent a copy, but the originals stay with the patient. The only difference is with a PET scan. There, there's a meeting between the radiologist and the oncology team and the results are given after, usually within 3 days. If they can do that here, there's no way you should have to wait so long!
Nicky
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waiting is the worst! Nothing like it to raise anxiety levels and let the imagination run wild. In the US, wait times and procedures for delivering results vary from practitioner to practitioner, hospital to hospital etc. I belong to an "all inclusive" HMO, so everything from all medical specialties to labs, hospitals, pharmacies and test facilities are connected. Because of this, I usually have my PET results in my secure email (their system) by the next day and a message from my mo explaining it. I usually see her within a week for a more in depth follow up. I wish we had consistent, timely windows for results for everyone because waiting truly is awful.
Caryn
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IF, big "if", I find out tomorrow morning it's just in my bones (see post from Jan 13), how is it treated? Do they do chemo, radiation? What about the node in my collarbone? He biopsied it, but it's still there. Just curious...
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Firelady, I have it only in my sternum and nearby nodes. I am doing radiation then hystorectomy then HT. GL TO YOU TOMORROW!!!!!
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Thank you so much!! I must say it's been the longest days since last Friday! Be glad when the morning is over & I know what I'm dealing with.
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Firelady, if you have mets elsewhere other than bone then your treatment will be changed. Sometimes this change may only mean a different AI or an oral chemo rather than infusion..........at stage IV it's all about control and QOL so the usual method of treatment is the gentler (if you can call them that) treatments first and saving the heavy hitters for later.
Good luck with your results!
Love n hugs. Chrissy
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I wondered if I would do chemo thru a port again. Thanks for the well wishes, I'm scared to death it's in my organs. Never expected the bones, so now can't seem to shake it could be in my organs. My lungs seems to be the worst on my mind. Noticed I'm wheezing A LOT when I sleep, I actually wake myself up. Haven't had any kind of issues that would cause it, so it definitely has my attention.
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I know it's hard to stop thinking "what if" and speculating on possible tx, but try to find a diversion, like silly movie or TV show. Even if mets are limited, you'll find doctors vary in their approach. For instance, I have never had chemo, only an AI and Pamidronate for my single bone met. There are others here with very limited bone mets who have had chemo. We are all different and there is no one way to go, so try to cross that bridge when you come to it. Easier said than done, but try:)
Caryn
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Thank you, Caryn! I took your advice, turned off the computer & actually had a decent evening. Of course, up early this morning, but feel better prepared to handle the day. Thank you!!
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question to my BCO friends: I had my first dose of stereotactic radiation treatment yesterday to my L2 spine that lasted approx 1 hr. By the time I got home, there was nausea then violent vomiting. The first episode was yellow liquid/mucous since I had only liquids after my coffee I had several house earlier. I called my MO ordered Zofran that I took but after 5-6 more episodes of the vomiting that turned into dark red liquid. At that point my mouth felt like I had a ball inside - entire oral tissue was swollen and I could not talk nor swallow. I ended up in the ER where several blood tests and a CT scan was done. I had IV steroids and more zofran. Shocker - no one knows what caused this. The Ct scan show retrolaringeal swelling but was not malignant - soft tissue swelling. By now that swelling with the oral swelling are gone and labs are fine! The RO said the radiation did not cause this. I have the second dose of 3 tomorrow. WTF?! Anyone??
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Vilma, oh honey, sounds like you have really had a time of it. I have had thoracic, lumbar, sacral, left humerus and shoulder, and each hip all radiated but not at the same time, problem free. Are they thinking allergic reaction? I am praying for you.
Anita
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no one knows.........
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activern it sounds like radiation poisoning to me. When you say your treatment lasted an hour were you being zapped for that long? I have never heard of radiation being given for that long, usually the Zapps last no longer than a few minutes.........I think I would be querying the length of time.
According to the Mayo clinic for you symptoms of nausea and vomiting that was onset after only a short time means that you were severely exposed to radiation..........please, before your next treatment talk to the radio oncologist Re your treatment.
Love n hugs. Chrissy
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Maybe you had an allergic reaction. Another explanation for the swollen throat and redish vomit could be because you were vomiting so much and so hard that you might have rupture some some blood vessels in the throat. I've vomited severely before and after a while it turned from normal color to a brownish red color. This severe vomiting was related to my acid reflux and the stomach acid may have also cause some irritation and resulted in blood too. So it's possible that you didn't tolerate the radiation well, which caused the nausea, and the vomiting caused the swelling and bleeding you experienced. My doctor told me that vomiting up a little blood after intense and constant vomiting isn't unusual and isn't a big concern. They're more concerned when you are coughing up blood without vomiting and it's an ongoing thing.
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thanks aaoaao and Chrissy. I kind of want to point to radiation poisoning. unfortunately the RO does not want to admit radiation was the cause. I look terrible - I am bruised around my chin and my left eye is blood shot. since this is a rare event, no one seems to know the cause. I did a treatment today but only felt weak, no vomiting but then again I am on steroids and zofran.
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Activem,
That must have been one horrific experience. I have nothing to offer as to cause, but I sure want to send you some virtual hugs that I hope make you feel supported.
Scorchy0 -
ty scorchy!0 -
Dear Ativern, I am so sorry to hear that you had such a horrible experience. I am glad to hear that your second treatment was better. Steriotactic is a longer procedure, mine was 45 mins to an hour. They have to do a cat scan before administering the radiation every time. I had very good results from my steriotactic , I hope that after all you've been through your results are positive.
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Hi everyone,
I'm new to the site but not new to BC. I was Dx in 2011 and got the aggressive treatments due to age (39) and stage 3 (tumor size/multifocal) finished treatments early 2012 and had blood work done every appt with onc and ct scan every six mos after.I had bone scan also early last year year and all scans have been cleared. I'm still on Tamoxifen.
I went on the site trying to find similar situation that I have been dealing with the last few months. I injured or thought I did my chest with a box late last year. Since then Ive had chest pains. Went to my GP telling her maybe I broke my bone but she said its chondroathritis and didn't think I needed X-ray. She just told me to take anti inflam and seemed to have worked. Then I had some sort of coug/resp issues and the pain got worst. But i just took motrin and antibiotics for the infection. Infection cleared but not chest pain. Early this year I had bloodwork done for onc follow up and when I met him he said tumor markers are up. It was up last year but its below 20. So he wasn't concerned. I told him about the chest pain and so he sent me for PET scan. Did Pet scan Monday and got results yesterday and scan showed "activity in sternum, t1, t8 and sacrum". So what happens next? Does "activity suggesting mets" really means mets? Sorry I'm having a bit of denial here.... I don't see my onc until early Feb and trying to digest everything...reading your posts helps me feel better. Thank you all and praying for all of us.
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Minne72. Sorry about your progression, and that you have to wait till Febuary, Waiting sucks!
I was on Arimidex for almost a year after bonemets found, I would think they might change you Antiestrogen!
Best of luck to you . Redroan
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Minnie72- I'm so sorry for what you are going through. For my bone mets, they had to biopsy to conclude that it was BC mets. I'm not sure what they will do with your situation. I'll be praying something else could be causing it rather than mets, but if it turns out to be mets, know that you have many treatment options given your HER2 and ER status. For me, I was switched to Zoladex from Tamoxifen and many are also put on an AI. I also plan to get my ovaries out. Additionally, I was put back on targeted therapy for HER2. I can tell you that I felt better once I felt I had a treatment plan. Perhaps you can move up your appointment so that you don't have to wait to get your questions answered and figure out options?
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Hi Minnie72. The Pet is suggesting mets, along with the increasing tumor markers. However, usually they will need to be confirmed with a biopsy. Is there any way you can speak with your Onc earlier? Be good to yourself, waiting is so tough!
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Minnie,
Hopefully, the "suggestion of mets" turns out to be just that. If possible, a biopsy may be performed to confirm mets and check hormone receptor status. There are instances where biopsies are not possible. Waiting is the worst! Is there any possible way to see your mo soner?
Caryn
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Hi Minnie and welcome although I know you would rather not be here as would we all. Your PET is suggesting mets but your MO may want to do a bone scan and or MRI to confirm as well as a biopsy to make sure. If it is mets, your treatment will change from Tamoxifen to maybe an AI but you would need to be put into menopause first with either Lupron or an oopharectomy as the AI's cannot be given to anyone not in menopause.
Can you call and try to get an earlier appointment?
All this is hard to get your head around and I know Oh so scary but it is still possible to have a long almost normal life with bone mets. Hoping you will do well and get an earlier appointment to help relieve the sress.
Love n hugs. Chrissy
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I had pet scan for elevated liver counts and 3 times they found something on t6 maybe t5 and first called it a hymengioma early 2013. Petscan in May was still too small to biopsy but needed an MRI. MRI said maybe and maybe not still too small but tumour markers had not changed. Sent MRI to be read elsewhere and they felt it was positive. In July Petscan and MRI showed positive but still too small to biopsy. I left to mdanderson where they confirmed t6 positive t5 hemangioma with mri and full bonescan Biopsy confirmed metastic bc on t6 only. Because there is only one lesion doctors plan was aggressive treatment with exempra 40mg/3weeks X 6 and xeloda 3000mg/day (7 days on 7 days off) followed by radiation X 35 mon-fri. To be done at mdanderson (I had chemo at home) They are calling it curative treatment with aggressive treatment. I was taken off tomoxafin immediatly (took it for 15 months). Oh and my tumour markers did not ever change. After radiation I will be on some harmonal treatment. Difference is my doctor here said no to chemo and standard radiation followed by harmonal therapy. So I guess it depends on who your doctor is. I finish chemo this week and am waiting for the results of the MRI and bone scan. I hope the chemo worked so I can move on to radiation. Both doctors feel the outcome will be positive. But this stinky cancer is so unpredictable and so different for everyone I sit and wait and be happy for today (that is until happy for today takes over with what if's for tomorrow).
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After an absolutely exhausting week of emotions, news, appts,
suggestions, concerns, facts, my head finally stopped spinning last
night. I NEVER felt this out of control & freaked out during my
first journey with BC. I had days when the emotions would take over,
but since Jan 11th I've been an absolute nut case, bouncing like a ping
pong ball from one wall to another. To feel somewhat grounded again is
such a blessing. Thank you to those who have responded on this &
the "Metastasis to Bones, so scared" thread. Like I mentioned before, these boards were a
tremendous source of encouragement, strength, information,
understanding, etc., during my first trip, I'm staying tuned for more
now that my trip is for a lifetime!!0 -
Happy to find this thread. Looks like I have 83 pages of catching up to do. Scattered lytic lesions consistent with bone mets dx'd from a CTScan 3 wks ago after I had a horrible bout of illness over the holidays -- the sickest I've ever been in my life, including excrutiating rib pain -- that sent me to my onc to see if something besides the already-dx'd bronchitis+pleurisy was going on. My CA27-29 was sky high, so the CT was ordered. Arimidex started yesterday. Xgave in the near future. My onc had tried to get a PetScan approved, but my ins. co. totally denied it. So we're going with the CTScan results, and I also have a second opinion in the works.
Glad to see some women here I already know, and looking forward to getting to know those I don't yet know, although I wish it was over something other than bone mets. Deanna
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Hi Deanna so sorry to see you here but glad you found the thread. Hoping Arimidex is kind to you but if not there are other AI's that you can change to.
There's loads of good info here so take your time to plough through the pages.
Love n hugs. Chrissy
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