Bone Mets Thread
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so Gracie now you can relax a bit and enjoy this world😊 I think for us in these instances life is so much sweeter than for the normal Joe.
So I have a surprise biopsy today , I just hate to go to the hospital anytime. This is a necessary evil as its for the POG study. So off I go. Positive thought positive thought
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Gracie! Excellent news on both fronts, now you can relax a little.
Wendy, sending positive thoughts and energy your way!
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I have bone mets to my spine and skull. MO has not mentioned any radiation. Do they only do the radiation if you are having a lot of pain
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Thanks Wendy. Will be sending good thoughts and prayers your way for the biopsy!
Annie, I don't think I've ever been this paranoid!!! I hope I can relax a little now. Working on that worry thing but man it is hard to control!!!
Diana, so sorry about your mets! Others will chime in but from what I have understood, they only do radiation if you are having a lot of pain, because once they do radiation, they most usually can't use that as a treatment again. Like I said though, others who are much more knowledgeable than me, will probably answer you too! Sending prayers your way
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Congratulation Gracey you have TMJ! This is a weird life. It needs to be said sometimes.
Wendy - I am guessing the surprise biopsy advances your treatment decision in some way, so congrats on the biopsy! I have a serious medical phobia so I know where you are coming from. But I have had 3 biopsies, none were too bad. Lifting you in prayer ...
Dianarose - As a rule, in Stage IV local treatment of mets is only done to reduce pain or keep an organ functioning, stuff like that. The rule is increasingly broken in people with limited metastasis ... there may be some benefit in get rids of mets if you have very few and they can be safely reached. But there may not be and radiation is hard on your body. Ask about it, but you may get a long complicated answer.
>Z<
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Gracie, good news. Paranoia - the new normal. Yeah, just when I stopped being paranoid about every little pain, here I go again! Difficult to get a handle on it for sure.
Funny(?) story. When I was in the hospital having my boobs cut off, I was talking to one of the nurses and said since she worked right there in the cancer center she could have a scan or whatever to check herself out at any time. (Forget how the conversation started). She said NO. She did not want to know and would rather just live her life without all the worry. That's one way to avoid paranoia!!
Got a follow up today with my onc and next week with the new onc that I might switch to permanently depending upon her bedside manner lol. Not sure what he's going to find today. Probably take blood and see where my tumor marker (CA 27 29) is. I am trying hard not to think about whether it will be higher, lower or the same. But I'm thinking about it. Since I have only been on Letrozole for a few weeks I don't know if there would be any change in status.
Kathy
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Gracie what a relief. Relax, remember that?
Wendy, where they are taking biopsy from? Zar is right of course, you'll be able to have a more decisive treatment with this info hopefully.
Dianarose, from my DD's experience, she has extensive mets throughout, they only radiated when she is in pain or was dangerously impeding in the spinal canal etc...The skull things also innumerable, more than 30, radiated only when it was bothering her, and when it penetrated a dangerous area in the brain. Not easy to move on, knowing it's there, but...From what I know, and you could check in in the brain thread also, so you get acquainted with what people say, and MRI is really the best modality for the brain area. Best wishes for this to work asap.
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thanks everyone for the information. I am lucky right now as I am not in a lot of pain. Sometimes my spine hurts but I go to bed and it's better. On occasion I get pain in the side of my head which totally freaks me out
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Hi fellow metsters,
It's been a while since I've posted and it took a while to catch up. You are such a wonderful group of supportive and knowledgeable friends. Thanks for being there for so many.
I want to throw in my tiny two cents. First, I grind my teeth at night and many years ago I got a custom night guard from my dentist. The grinding caused a lot of pain and splintering of my teeth, but I had no idea I was doing it until I started using the night guard. Several months ago I went on Doxil which caused severe mouth sores. They were so bad that I could not wear my night guard, so the jaw pain came back as well as the teeth splintering. Something to think about rather than scary thoughts of further mets.
Second, Lita your daughter's project is wonderful. You are a great inspiration to me and I thank you for your willingness to share every aspect of this sh!t disease.
Also, I started with 'only' DCIS back in 2007. I had a bilateral and was told that no followup was required, as it was considered pre-cancer. Eight years later I was diagnosed stage 4, but I know it had been there a good while. I can no longer think about the 'what ifs'. At this point it is what it is.
I've been undergoing some kind of treatment since Dec '15 and I've seen nothing but progression, especially in my spine and lungs. The spine pain is manageable with narcotics, tho I am very reluctant to take them. I hate the extra cloudy thinking and bowel issues. My 1st step is always ibuprofen, followed by oxy and my MO is perfectly fine with this. On the rare occasions that the pain is crippling, I find applying heat is magical even tho heat isn't often recommended.
Best wishes and happy scans to all.
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Lita, thank you for sharing your journey with us. Your daughter is very talented! Blessings
Diane
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so the biopsy was a breeze , I told the doctor she could have all of it but she only wanted six samples.😏I'm now officially on the POG program and afterwards went to lunch with one of the researchers who I paddle with and she told me five percent of people that do the POG are cured regardless of stage and another five percent are given the correct Jed's and do better.
So I'm looking at this as a lottery ticket and trying not to think to much about it.
Lita give your daughter a big hug from me.
Wendy
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Glad it was easy, but take care of the biopsy location for several days. It's not over until that is fully healed.
Very interested in the POG program. Please report.
>Z<
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Takes three months for the results and in order to participate you have to have at least six samples if He tumour is to small it's a no go. Of course I will keep all of you posted what they do and say we are in this soup together😊
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We are in quite a soup indeed.
>Z<
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Wendy, I am so excited for you. I hope you are one of the 5% that is cured, but even if you are not, this is a great opportunity for you. The success of such programs in Canada, the US, and other countries would certainly be a first step in a new tool for finding the right of care for people with cancer. There is a lot of talk about personalized medicine, but let's be honest here, it just hasn't happened yet for most of us. Instead we are offered treatments based on standards of care. As we all know, those treatments work for some of us and not for others. In my mind, the POD program could be an important piece of the puzzle for personalized medicine.You are helping to pave the way for all of us. WOOHOO! Three months must seem like a long time for you to wait, but you are a busy woman, and the time will fly by. I have to say it again.....I AM SO EXCITED FOR YOU!
Great big hug for you.
Lynne
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Noni,
I'm another DCIS starter. First 2005 (lumpectomy and rads and Tamoxifen) then again, on the other breast in 2012- got a bilateral mastectomy then. The pain that ended up being mbc started in 2013. I had good care between bc 1 & 2. Just happened. There is debate on which one metastasized, but it doesn't really matter. I think it's really similar to those who get it de novo- just there's a delay.
I hope you find help for the pain. I know it's a balance with all the se.
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Wendy you're so giving, it's a pity they did not take you up on it. How long till they let you know? And then how long till you could get started.
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Dianarose, I can't speak to skull mets (there may be a different protocol), but I have limited mets to the spine and iliac and had no pain. My onc recommended radiating those spots and I went through 15 txs that weren't too bad at all. That was over a year ago, and so far, so good. Just my two cents.
Wendy, congrats on making the trial, and look forward to your reports of good news. Babs, you must be getting so excited for the wedding! MomATT, hugs to you and Dani as you figure out the next treatment. As always, my best wishes to you both. You are always in my thoughts. Big Hugs. Welcome to all the newbies!
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Momallthetime. I was told it would take three months for the results so I will try and not think about it to much till I know more. Then we see what medication is best for me. till then it's same old letrozole and ct scans😔.0
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Wendy, I am so happy you made the POG program. I pray you are in the 5% that are healed. The three months will go by quickly. We all look forward to hearing your experiences as the program progresses. Blessings!
Diane
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Interesting day yesterday.
My wife, KD, has had two surgeries in the past 6 months on her Cervicle/Thoracic spine because of a severe compression fracture. I have been watching a spot at the top of her surgery site because it stayed irritated. We thought the "hardware" from the fusion surgery was wearing on her skin from the inside.
Well, the night before last, I noticed a small hole at that site. We went to her plastic surgeon and he opened it up to reveal that it was actually the jagged end of her C-7 "spinous process" (the protrusion that sticks straight out of the back of the vertebrae) that was wearing on her. He said, "This is great!", and took a surgical tool and cut the bone back about 50%, stitched her up and sent us on our way. What a relief.
KD's last scan showed a slight increase in the tumors on her liver, however, her MO attributes that to breaks in her chemo before and after the two surgeries. She has a couple of more rounds the next two weeks, then he will scan her again. Hoping for a better report then.
Louis
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Louis, praying for great scans next time
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Louis - Goodness what a doctors visit. Praying for awesome scans.
>Z<
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Louis, you are the man!! Wow, she didn't fell that thing protruding? How scary? You think surgeon could have filed it more during surgeries? Not that it changes anything now, but I wonder if they could be more thorough.
Sorry for the increase in mets, all I could say that Dani's #s were screwed up during February, and her chemo schedule was getting so messed up, I really think that certainly did not help with the progression. If we could have a crystal ball, and know oh, let's just try with lower dosage, maybe the numbers could keep straight etc...would be great to have more time with that treatment, but things move so fast everywhere with her, no one could take that chance. It could very well be the breaks KD had to have that messed with her also so hopefully it will get better now and straightened out.
Wendy i know it's hard, but POG is just a fantastic opportunity, we'll help you past the time!
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Reading along. What does POG mean other than pineapple-orange-guava?
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I am curious as to what POG is to0
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It the Personalized Oncogenomics Program of British Columbia. Gotta live in BC. It's not wildly different from the MATCH but the match trial only looks for activity in a small subset of the drugs that the POG program looks at.
It's also not wildly different from what Foundation One tries to do but, again, the POG looks at a larger set of possible treatment.s
Alas all we Americans can do is say GO Wendy!!!! and hope they publish their results.
>Z<
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So happy. Having my last Taxol for 2 weeks in a few minutes. MO is giving me an extra week off for my dadwedding!!!! Hopefully I'll be able to dance my tootsies off at the wedding on 4/2!!!!!
Babs
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Babs fantastic, only the wedding to think about now.
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Yes Babs, just ENJOY!
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