Bone Mets Thread
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teejay92 - I am so very very sorry for your loss. I will pray that God is holding her closely and with Him she will no longer be suffering in any way. I know during these times we may feel deserted, but it is exactly during these times that He is closest, guiding us through, there by our side. I am sorry you had to say good-bye to your mother, and I wish you comfort doing this time. She will live on in your heart and you will see her again one day. I hope in time the tears of grief will be turned into tears of joy when you remember her. Thank you for sharing the news and for loving her so much.
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Interesting story, Jen- they show that serial analysis of the cancer of a HER2 exceptional responder revaled that she had lost a PI3K mutation, so they will now track the responses of others to see if the long-lived responses correlate with the loss of PI3K signaling
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teejay92 I am so sorry about the loss of your mother. She was blessed to have such a great daughter to be by her side through all of this. May you always hear her voice in your heart.
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Teejay, I’m so sorry that you’ve said goodbye to your mother but celebrate with you that the cancer can not cause her any more pain. Many hugs to yo
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Teejay, I am so sorry for your loss but know she is rejoicing in Heaven pain free.
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Hi,
I don't know where else to turn. My CT and Bone Scan 7 months ago were completely find. I asked my MO for another CT for "peace of mind" and they found lesions on my ribs and sternum and elsewhere - 5 total. My MO said this isn't not 100% cancer until we biopsy and have a bone scan, but she knows it was not there 7 months ago and she is concerned.
I just finished radiation and think maybe that could be the cause of the rib/sternum lesions, but they don't know for sure and are worried. She also mentioned it could be metabolic changes from chemo/lupon and treatment. Again, we don't know until we biopsy, but she is concerned.
Until then, I'll live in this purgatory assuming I am stage 4 as all signs are pointing to it. Please keep me in your thoughts and prayers. I am not even 4 months out of chemo yet and have already potentially progressed. Something just doesn't add up. Either chemo didn't work or I have the worst luck.
I am so sad and afraid of dying and leaving my sweet husband to care for himself. We are only 35 and just started to plan out our lives together and when we would use our frozen embryos. This is so unfair. I know you all understand that deeply.
x
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berries,
I would go ahead and have the nuclear bone scan -- I believe that that is the standard of care imaging for possible bone mets. Until then, I would try to just breathe until you get the results from that scan. Good luck with this. Thinking of you.
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berries - there really is nothing for it but to wait for the next step to be completed. Instead of assuming you have bone mets, you should be assuming the other way - none until confirmed - which is how your MO is approaching it. If it does turn out to be mets, there are therapies that help women live, and some with very good QOL, for many years yet. Based on your posts it looks like you have no pain otherwise, which is far more than a lot of us can say, so even if its mets once you are put on the hormone and targeted therapies your life still won't look much different from today.
Sunshine - how are you doing after your rads? 45 minutes is a long time on that crappy table. That thing is so hard, and the gowns so flimsy, I felt like i was being offered up as some sort of sacrifice to the gods in a bad B movie!
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berries, I agree with Bev and Sondra. I'm sure that the following advice isn't needed, but do stay on top of this. I have found how important it is to be your own best advocate. Good luck, and hoping that this isn't bone mets, but if it is, there are solid treatments available which should give you good quality of life while the researchers find a solution for us all!
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Quick question,
Was a anyone here told the cancer is “throughout” whole sapinal cord? I Haven’t had pain. Few aches and sneeze or cough hard and throw my back out. I’ve always had back issues though, issues w lower back discs. Thanks in advance all
:-)
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Sorry one more question. After treatment for bone mets, had my session yesterday do any of you feel some aches more sore where cancer is? But then it goes away? I notice it more when I’m active treatment. Thank you again all:-)
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Hi Dliittkemann
Yes, I have extensive mets throughout my spine and more. This includes thoracic, lumbar and cervical spine (my MO says cervical is not typical so they usually don’t scan there). I also have mets in ribs, the sternum, the scapula, my hips and the base of my skull. I think my toes and fingers are still clear. 😉
I’m not sure I understand the second part of your question.
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Thanks for reply. Sorry what I was asking is after my infusion w chemo and immunotherapy, I actually feel aches where my bone mets are located. It’s odd. Wondered if means treatment working or means spread :-/
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thanks so much everyone. i have a bone scan tomorrow. i would appreciate any prayers and positive thoughts for me and my husband. i just want to live a long life with him and we don't deserve this in our mid 30s... none of us do. </3
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Ah... I understand. I've often had aches and pains after various treatments but can't say if they lined up with my bone mets. However, I've had limited chemo since my stage IV diagnosis as I'm estrogen positive. We're saving the big guns for later.
I know many have reported what they call a tumor "flare" after treatment which seems to be associated with a positive response. Let's hope that's the case for you too!
Berries, sending positive thoughts for your scan. The others have provided good advice - don't panic just yet!
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Berries, the very best of luck with your scan. Please let us know how it goes. Hugs to you and your precious husband.
Delittkeman, what treatments are you currently undergoing?
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berries...my thoughts and prayers are with both you and your husband.
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SondraF - thanks for the laugh with the image of the sacrifice to the gods in a bad b movie. The machines made me feel like I was in a futuristic aliens movie. Fortunately only the first three sessions were the long ones. Now I've started on rads to my femur, and they're quicker and I don't have to have my arms extended over my head.
I had a bit of a rough night last night with nausea, I think related to the Zometa infusion. I had picked up a script of Compazine yesterday, not thinking I would need it, but I'm glad I did. Took one about 4:00 AM and that helped. Got up, took a shower, and then slept on the couch for a few hours. I'm hoping this is only going to happen on this first infusion of the Zometa. It looks like these are common side effects, especially with the first dose.
I'll start the Ibrance on June 10 - after I've finished radiation and have seen my MO again. Here's hoping for few SE from that one.
It looks like a nice day here. I think I'll take myself for a walk and mail a couple of cards.
Cheers!
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I am on Abraxane and Tercenteiq.
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Berries - I will keep you in my prayers for your scan/biopsy. The waiting is the hardest part for sure. I'm 42 and prior to breast cancer would have said that my 40's didn't feel any different than my 30s. Like you I progressed from stage 2 to stage 4 within a year. and that's hard at any age. I'm sorry you are dealing with this so young.
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Sunshine, I have been on Zometa every three months for four years. I find if I take a Claritin the day before, the morning of, and the day after that I have fewer aches and pains and less nausea. It is worth a try. Where are you in San Diego and where do you get your treatment? i am with Kaiser and have been very pleased with my care so far. I live in PB.
Berries, I am praying things settle down for you and they find a good treatment quickly. You and your husband deserve more quality of life full of many blessings.
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IntoLight, thank you for that recommendation. I will try the Claritin next time. I did have some other mild flu like symptoms, but they weren't really bad. We live in Mission Hills and I've been going to Scripps in Torrey Pines. I, too, am very happy with the care I've received there. Both my PCP and MO from 12 years ago when I had my first cancer have retired, but I'm very happy with my new PCP and MO. Plus they're both young enough that I don't think they're going to retire anytime soon!
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Hi, I am new to this thread. I have mets to my spine and hip but mostly the oncs focus on my liver mets.
For over a year I have had hypercalcemia and recently (since starting Doxil) they have shot up to an almost severe level. I am on a daily IV drip and drink at least 4 liters of water a day, which keeps it just above the upper limit for normal, but who wants to be on an IV constantly?
I have been on Bisphosphonates, first every 9 weeks, then every 6 weeks. They don't seem to have an effect anymore.
Would radiation bring my calcium levels down? am a little worried about the strain on my kidneys.
They tested my parathyroids which produce almost nothing, but that's a sign that they are responding to the hypercalcemia from the malignancy.
would radiation help?
greetings from stockholm! AMY
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Hi all
My first cat scan since I found out I have bone mets is tmrw. I am beyond scared. I have had so much bad news, praying for something positive for once. I had scanxiety before at stage 3 but this is a whole new ballgame. I’m on Abraxane and Tecentriq.
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dlittkeman, we'll all be thinking of you and saying a prayer. Good luck for the best possible news!
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Thank you so so much. I appreciate it. I’ve been extra scared since this last week I’ve had some lower back pain and other aches. Scares me even more.
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I'll be thinking good thoughts for you too, dlittkeman.
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Thank you so much. I will take all the positive thoughts I can get. Does this part ever get easier? It’s my first scan since found out bone mets so this one is very scary for some reason.
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dlittkemann— sending you positive thoughts for your scans tomorrow.
You asked the anxiety gets easier with time. I am fairly new to MBC myself. I would suspect anxiety with each scan but expect to develop tools to use as coping mechanisms as time goes by.
There are many others on this thread who can answer your scanxiety question better than I did.
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Arolsson— sorry you are going through all of this. I don’t have experience with liver mets or hypercalcemia so don’t have much I can help you with.
I know others at BCO have had hypercalcemia. Hope they find your post/question.
Sending you gentle hugs.
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