Bone Mets Thread
Comments
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That's a good thought, Z. I don't know if there is a stroke prevention pill to carry around, but I should inquire. I am taking a low-dose aspirin for a while, though, and keeping my oximeter handy. Dang thing was my necklace 24/7 all last winter when I was trying to learn to breathe again after the heart surgery.
Was milk thistle one of the ones you skipped over the summer? I decided last week that it is time to pulse that one in again. I am afraid to take much of anything while on Taxol. How I would love to be loading up on curcumin but there is only so much the liver can take and mine has failed more than once so I try to give it a wide berth when it's got hardcore stuff to filter. But I figure milk thistle could only help.
I still have your protocol from a while back and would be curious to know what you're taking now.
The high dose B vitamins for the homocysteine are making me feel so jittery and anxious that I have resorted to Ativan. If you remember how drug-shy I am, that should shock you.
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Maire. Good luck with scans
Lulubee I'm sorry you're going through a rough patch. I hope your scans are good. We all need some good scans
Went for my study on Thursday and my TMs went up. Due to rads on Monday I have to stop the study drug. I'm a bit worried. MO called and said to stay the course for now. My scans are 11/21 as previously planned. Going to Paris on 11:22 to surprise my DD for her 40 th so at least I will be too busy to think about the results over the Thanksgiving weekend. This roller coaster is getting old!
Babs
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Babs-I'm so glad you are getting away to Paris to see DD. It Helps you feel part of life and joyful and she will be thrilled. Sometimes TMs go up when cancer is dying-happened to me.
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I did drop milk thistle and it is still not on back in the pile of pills. I do wonder about that. My current priority is gut health and mushrooms like turkey tail that increase lymphocytes to support the immunotherapy treatment. Beyond that I am still working things out after getting back from Japan ... I have a bunch of diagnostics scheduled this month that will give me a better sense of what I am dealing with.
>Z<
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Nkb I am hoping it's that -cancer breaking down but until scans it's hard to think positively.
Z I'm praying for you and that the treatment helped your condition a lot!!!
Bab
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Babs, I know it is difficult to think positively sometimes, but I do hope that your scans will bring you good news so those terrible thoughts will vanish from your mind. In the meantime, try to concentrate on your upcoming trip to Paris. What a wonderful place for a birthday party. Before you know it, you will be back there yet again for the birth of your grandson. My thoughts and prayers are with you.
Hugs from, Lynne
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Paris! Good for you, babs.
Sounds like several of us have scans before Thanksgiving. Group hugs, group prayers, group strength.
Z... "a bunch of diagnostics scheduled"... I hope you will talk out loud to us through all of that. We are all always listening to you. As for me, I just hit the payment button on 23 & Me (been wanting to do that for years, ever since I got the MTHFR dx) and now that Viome thing you posted earlier will be dancing like sugarplums in my head tonight. Sorely tempted. Yes, indeed. That is useful info right there. Keep talking, I'm listening.
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Z....I will follow your suggestion and thanks for the link. I don't know Patty as I joined just as she started being unwell and didn't get a chance to read many of her posts.
Babs... I hope your scans show a good result, or even a stable one. I'm learning that stable is good. It's wonderful that you're going to Paris. Have a really wonderful time.
NKB and Maire...still thinking of you.
Hugs and love to everyone waiting for results or having scans soon
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Just checking in. I've been reading but not posting. Sending love to all. It was a big week...Halloween Tuesday (and leading both the classroom and neighborhood parties) and gamma knife yesterday. Happy to be on the other side of both.
Scans show no active disease from the neck down, so hope I can get a couple months with no changes.
Headed to Mexico tomorrow for some family relaxation and togetherness.
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Bluefrog76 - great pictures. Your children are beautiful. The picture of your son is stunning. So, is the last picture you in your Halloween costume? If only...
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Babs- Enjoy your time in Paris with DD!
Z- Welcome home. Hope your upcoming tests show the treatment was wildly beneficial!!
Blue frog76- Your boys are really growing up! Wonderful photos:). Good looking woman in costume, too! Glad that is behind you!!
Sending Warm healing weekend wishes to Lulu, Animal crackers, Lita, Leapfrog, Lynne, Lynn, NKB and Dani through MomAtt, along with the rest of the gang!
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Rachel, it is always good to hear from you. Have a wonderful vacation in Mexico. Your children grow more beautiful and handsome with each photo you post. I hope you remain with NEAD from the neck down and the gamma knife procedure gives you positive benefits.
Lynn
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Rachel. Thank you for the pictures. Your kids are adorable. Enjoy Mexico !!! I'm hoping you stay NEAD for a very long time !
Bab
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Rachel love the kid pic they are so cute. It looks like they had a great Halloween ☺️. Your costume doesn't look like so much fun but it's behind you now. Have a great time in Mexico😊
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bullfrog, I haven't seen you in so long! Really cute pics of your kids there. Hope that gamma knife kicked butt!
lulubee, Goodness, you have just had everything thrown at you lately. Hope that gets straightened out fast and let us know how the Viome thing works out. I am tempted to try that too.
babs, Hoping the TM's are just "flares" too. Enjoy every second of Paris with your DD and try not to think about the scan results, not easy.......
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Rachel, it is so nice to hear from you! I think of you often and pray for you always!! The kids are growing so fast! I love watching you experience so many things with them! And now,Mexico! More pics to come???
I hope the gamma knife gets you back to NEAD!
Babs- I’m praying away those bigger numbers in the tm’s!!! I can’t wait to see baby pictures! When is your DD’s due date? All of my girls are December babies. 10th, 14th, 28th. It’s crazy,but that’s how it worked out for us.
Hope everyone has a great,pain free, giving cancer the middle finger type week!
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Haha! Good one Chelle! I can't believe all of your girls birthdays are in Dec! That's crazy....
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Cbelle. great one. I need to share it with my family and friends. DD gives birth on 12:18 by C section. Can't believe all your girls are in December. My 2 granddaughters are 2/3 and 2/15. DH is 2/10 and my twin nephews are 2/9 so that's our crazy month!
Bab
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Babs - Congrats on your new grandchild!!!!!!
>Z<
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I'm having Foundation One testing done. For those of you have had it done, did you find the results helpful in your treatment?
Chelle, love the picture
Rachel, A well deserved vacation for you and your family. Lynne....how was Hawaii?
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Linda. I had impact assay testing which is similar to foundation one. Based upon that, I qualified for the study I'm currently in. So yes it was helpful!
I had my first of 10 rads to my spine tonight. We'll see how it goes!
Babs.
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My F1 has been referenced for every decision since I had it done. Knowledge is power. If it keeps me from wasting time on even one chemo that is not right for me, it was worth it.
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I had Foundation One done on my last biopsy. The results are helping interpret the cause of my recent progression and that path forward. However, I would have gotten the same information and more from Caris Molecular Intelligence. It is a more comprehensive and valuable test that includes immunohistochemistry. I lack key pieces of information to make treatment decisions as I navigate a treatment transition. Caris would have provided those. Contemplating a second biopsy to get CMI data.
>Z<
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I am contemplating getting a biopsy of my sternum where I have a stubborn met that doesn't behave like other mets. Not even sure it is a met. Anyone have a biopsy of their sternum? What was that like?
>Z<
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I thought I'd check in on a few things that have been going on with me.This may be long so please excuse my lengthy post! First of all I talked to my oncologist about the MRI report that basically shared for the first time that a prior MRI (3/16) that I had for unrelated issues had already shown mets even though the report was "normal". I felt better after talking to her because she said that my prognosis and outlook is not different even though they could have caught the mets 18 months earlier. She said it's not unheard of that a subtle met on a scan is not discovered until later once they know it's there and where to look. I'm now on my 4th round of Faslodex/Xgeva, and started my 2nd round of iBrance Sunday. I had to wait 3 days to start my iBrance due to low WBC. I continue to have back pain, which I have had since my vertebral fracture in June. I've had a vertebroplasty (which as a side note my insurance company has denied to cover. Now in a fight with them....). I've also had radiation to T5-T11. And still moderately painful back aches. I am having an MRI on Sunday to explore whether there are new fractures in my back or if it's "only" muscle pain. I find it's very stressful to never know if something I'm feeling is an actual cancer-related problem or simply normal life. I've had back pain (muscular) on and off for years and while this "feels" different I just don't know how to tell what's going on. I also get very achy and tired on my treatment, but still very thankful that it's so much more tolerable than other treatments I've had in the past, including A/C and Taxol. A friend gave me a fabulous cookbook for healthy food designed to support our immune systems and treat side effects from treatment. I've included the picture here if anyone is interested. in particular I've been enjoying the bone broth daily which is supposed to be terrific to boost the immune system. Hugs to all of you on this thread. I wish I could meet you all in person as you seem like such an incredible, strong, resilient, and interesting group of women.
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Hi LA894,
I totally understand the issue of not knowing if it is normal wear and tear or if it is cancer related. I have had back trouble for years but have been dealing with sciatica for the last two weeks which they attribute to a tumour at L5. I'm now scheduled for radiation next week. The RO ran through all of the possible SEs but, holding my breath a bit to see how it impacts me. We're all so different in terms of our experiences with these treatments. But with luck it will get rid of the issues.
This is a great group. I don't know where I would be without the support.
Take care of yourself.
Pat
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I've seen that cookbook and plan to pick it up today. Could use some new healthy recipes around here! I think we all wonder at each ache and pain and pray it's not cancer related.
babs, Hope the rads kick in fast and knock that pain to the curb.
Z, Is the Caris test something your insurance would cover or would you have to pay OOP?
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It would be great to just have old lady pains with no worry. I had an inward growing pimple on my neck last week and thought for sure I had progression to the lymph nodes in my neck. I would love to not be on the crazy train every day.0 -
Thanks Mary Lark. The "crazy train" is a perfect description. I want off
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Hi,
Thank you for your post! I found out today that I have metastatic disease in my pelvis. After talking to Jesus and my husband, I logged onto this community and found your thread. How could I join your fitbit community, it sounds awesome. And thank you for all the good info you took the time to post.
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