Bone Mets Thread
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Hi Dianne,
Welcome but sorry that you're joining us. I also have a single bone met (femur). I never even made it to chemo. Despite being staged IIB after my bmx, an unrelated PET scan accidentally turned up the met. Though I had no pain, I did have rads to render it necrotic. That was a bit more than 3 years ago and so far, do good. You've found a good place for support and info.
Caryn
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Hindsfeet - Condolences to you and your family. So sorry to hear this.Dianne - sorry to welcome you to this Stage 4 club but glad you found us. All these wonderful ladies kept me sane when I was dx 1 year ago. And as PattyPeppermint said it does get easier. Keep us posted.
Deanna - I had a bone scan today - long day. I hope it's still NEP (no evidence of progression - can't remember who named it this way but I like it).
Linda
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I hope it's still NEP too Linda. I am currently experiencing some anxiety about my latest bloodwork. I've never really been anxious about it before. I should have asked them to send me a copy. I'll call and ask them tomorrow. Otherwise I have to wait until 12/4. Hahaha. That will be here in no time.
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Thanks Dunesleeper. Any specific reason for your anxiety? Have your blood results been good lately? I just hate this darn anxiety waiting for results. How is your pain? Hope it's better.Linda
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Welcome Dianne,
I'm sorry you have a reason to be here. Hang in there, it gets better with time. T.
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Thanks for the warm welcome. I'm hoping we are ALL around to support each otherfor years to come!
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Hi Deanna,
I see people mention blood work being done on a regular basis. I thought that my tumor markers and CEA were being done every month but it turns out they only did them initially. The monthly blood work is to check kidney function while I'm on pamidronate. Do you get tumor markers done regularly? What's your MO say about them?
HI Dee,
I saw the MD at the Cancer Centre (covering the MOs while they did a conference) last week and this week I'm getting a Portacath as well. What was your downtime like afterwards? Any issues or advice? They're going to do conscious sedation for it so Thu afternoon should be pretty smmmmooooooth.
Cheers!
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hi Tracey,
If it's any comfort, many mo's do not do tumor markers as they believe they are not accurate for everyone. My mo has never done them because she feels too many other things can make them rise. I am getting PET scans every 6 months, but would have them more often if I had symptoms. Conscious sedation, IMO, is fabulous and having the port put in is pretty easy. I don't have the porta cath brand, rather a Bard Power Port, but my recollection is that healing was easy (it's been 3+ years). I just had it flushed today and it's always worked very well. Wishing you the best.
Caryn
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Hi Tracey, My porta cath is fine, though I'm still very bruised even though it's been 3 weeks. The only problem I had was the incompetence of the receptionist at VGH, but everything else was fine. It doesn't seem to take any less time to do the infusion. One would think that if they don't need to wrap & heat your arm, they just plug you in, that it would take less time, but it's still 1 1/2 hours. Also, don't forget to always take your card that they will give you. The RN was telling me that there are different models & they all have different requirements for flushing & they need to have that card.
The only thing I would mention is the placement. Since I don't wear a bra it doesn't affect me, but if you do, I would say that my port would be exactly where my bra strap would be & I bet that would be extremely irritating.
My onco likes doing Tumor markers, she says that because they are always done at the same lab, it gives her a trend to see how the tumors are responding to treatment. Now that they do the blood work through the port, I'm happy to have it done at the same time as the kidney function tests which they do every 3 months for me.
Cheers to all!! Dee
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Thank you for your thoughts for my family. I am still in Texas with my family. Because I am here, I'm missing another infusion.
I picked up the marshmellow root at the holistic college in Portland, Oregon. You can probably buy it over the Internet. Ask for the powder form. Just put a teaspoon in a glass and let it sit overnight. It doesn't have much of a taste. Add a little juice to it.
I had radiation from neck down to mid back. I also had it in the left spine and femur. I had a 2 C tumor in the left femur along with a few other smaller ones. I also have tumors elsewhere in the bone that they did not radiate. They only radiated the ones in crisis and that would affect my quality of life. I also have tumors in the skull, sternum and arms that probably won't be radiated. At this point they don't see me surviving so they left the tumor in my breast, lungs and liver. My oncologist thinks that Herceptin/Perjeta can stabilize those tumors...hopefully. I also had a Gamma Knife for 4 brain tumors.
However, I feel as if I don't have cancer. I am feeling strong and fine. My niece was dx with cervical cancer last April about the same time I was dx with breast cancer in the good breast. She just lost her battle. She lives in Texas as well. She was only 24 with a 3 year old daughter. Having two deaths so close together was tough.
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Tracey, I alternate seeing my local onc and UCLA onc every other month. My local onc always does tumor markers (CA27-29). So far for me they seem to be very accurate, although as Caryn said, they may not be accurate for everyone. Plus I don't think either of my oncs would go solely by TMs, but along with scans and pain level, they can help give a more complete picture of how things are going.
Hindsfeet, you and your family must be just reeling from the double blow you've all had. 24 is way too young to have to deal with cancer, no less lose the battle. I'm so sorry.
Linda, here's hoping for continued NEP!!!
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Oh Hindsfeet. That is way beyond tough! But you keep on feeling strong and focusing on living. I wish I could give you a hug.
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Linda, I can't really pinpoint why I'm anxious about the bloodwork results. I think my pain level increased since I saw the MO last. The last time I saw her I didn't need to take the pills every day. Of course, for a while I had those special cookies to help me. I seem to need to nap a lot, but that could be the depression I have always had. I think I should be doing life, not napping. I get some unexplained shortness of breath, so you know where my mind is going with that. LOL
I just need to be well through May ...................... for now. LOL again.
Charlene
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Hello everyone,
Dianne, welcome but sorry you have reason to be here. I am fairly new here as well, diagnosed Stage IV in September of this year. The women on these boards are extremely helpful with their shared pool of knowledge and experiences. Wishing you all the best!
Linda, praying for NEP for you as well!
Hindsfeet, your family has been through so much and your niece losing her battle with cancer at such a young age is heart wrenching, especially leaving behind a 3 year old child. So sorry for your losses
. Thanks for all the info on your rads, I got the call yesterday and they are starting Monday December 1st. I am concerned of side effects, especially worried about the rads to the sternum. The tip about the marshmallow root is very helpful.Dunesleeper, I can understand your anxiety, it's just the unpredictability of this disease. Sending positive thoughts your way. I still have my special cookies and they do help me.
Well I've developed that nasty cold that's going around and feel dreadful. I need some chicken soup but have no energy to make it. I hope this doesn't hang on for very long.
Hugs to all, Annie
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Hi Tracey, had my port implanted last April and it was a pretty easy procedure. I had someone else drive me home afterwards. The port was used the next day for an infusion and everything went well. I agree with the others on discussing placement of the port before implantation. My main concern at the time was it not being visible along the neckline of my mother of the bride dress as my daughter's wedding was this past summer.The port makes things lot easier for me. the worse part was the chemo talk and the fact that I will be on some sort of chemo for the rest of my life. I am still struggling with that fact. Charlotte
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Oh Annie I'm so jealous. I'm too afraid to get it myself. I don't know anyone except my friend who decided it was too risky. Oh well. I was reading an article about bone broth and it occurs to me that regular consumption of it could be helpful for us. Just have to find organic bones. I'm going to try it.
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organic bones? Perhaps they have them at a Whole Foods, since they have real butchers there who are usually happy to accommodate requests.
Caryn
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Good thinking Caryn. The article suggested using a crackpot and letting it cook 12-24 hours. When it cools it should congeal and be wiggly like jello. That tells you that you got all the good nutrients from the bones.
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I know you meant crockpot, but I love typos, so I got a good chuckle out of it. Yes, the marrow creates that gelatinous substance. I bet Whole Foods has a lot of bones that they just get rid of so you might luck out and get them cheaply or even free. I usually get my lamb shank bone for Passover from them. Charge has been minimal and once free!
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Hi all,
Crackpot indeed - love it!
Annie - sorry you have a cold; that sucks!
Dune - I'm always a stressed puppy before getting results. I'd say it's normal, but I'm not sure I'm normal.
Linda - Here's to staying NEP!
I go to the MO today, random routine appointment. I think I have a sinus infection, which isn't fun. I'm absolutely exhausted all the time and I'm really sick of this chronic fatigue. It's like there's not enough sleep in the world for me. At least I got to sleep in a bit today; working from home and no meetings until 10 am. Then off to the MO this afternoon. Part of my fatigue may be the crap weather we've had; constant wind, frequent rain, clouds, etc. I need sunshine and warmth!
Hugs to all,
Terre
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Terre,
Good luck with your appointment . On my October PET, my clogged swollen sinuses were noted and called chronic. I do use a neti pot regularly, but I'm allergic to my dogs (have fallen in love, so getting rid of them is not an option).
Caryn
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Hi all.
I have a question about biopsies. My MO wants to do a lymph node biopsy. I have two nodes peeking out of my clavicle area. The reason he wants to do the nodes is because they think there is not enough tumor left from original biopsy from January of this year to do some testing. I am afraid to do it. Won't the node leak back in my body and create more problems? Has anyone had a node biopsy? Will it produce the same results as if it came from my bone tumors? My nodes are effected by the Cancer. He never mentioned why a node biopsy compared to a regular biopsy. My first biopsy was involved. Had to use the CT scanner and it was on an outpatient basis.
Deanna - no scans this week but following Monday I have a PET scan. Tuesday I fave an MRI on my C Spine. Wednesday I have an echo for my heart. Thursday I have appt with MO to go over results and see if the chemo is working! I hope so! I had a really bad time last infusion. I just wanted to stop all chemo and be normal for awhile. Hard times for sure.
So we will see what the scans say.
Hugs to all and have a wonderful Thanksgiving.
Lorri
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Crackpot. teeehehehehe.
Terre, your sunshine is coming isn't it? We moving into winter. Brown leaves all over. Getting snow-blowers prepared. Expecting snow tomorrow. Please God. Don't give us a dose of Buffalo!!!
Lorlyn, I had a node biopsy because they wanted to determine if it was still ER+. I had the same fears as you do, and I don't have any answers for you. My swollen nodes were my first real inkling that the cancer was back, so I just let them do whatever they wanted.
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Dune - it's theoretically coming onto summer, but we're still experiencing "unsettled seasonal spring weather" and "fresh" winds. Here, "fresh" when used in the context with "wind" means just below gale force. It's warmer than it was, but they still had snow on the mountains last week. I'm over it. Of course, I was over it in July (winter that is), and so now I'm REALLY over it. I'm a sunshine person and tend to get grumpy and depressed after multiple cloudy/rainy days in a row. That said, it's still windy, but at least the sun is out now!
I'm the only crackpot at our house.
The "crackpot" thing reminded me of an incident several years ago in the US, when my (then) boss was dashing out of the office to catch his flight and we still hadn't discussed something. He held up his Blackberry and said, "blackmail me". From then on, it was known as the blackmail device. Hugs to all,
Terre
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Caryn, Your post gave me a chuckle....on a CT of abdomen a few months ago the radiologist noted two large contusions bilaterally in gluteal muscle. He was making note of contusions caused by the Faslodex injections 2 weeks prior. LOL Peg
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To all my wonderful "sisters" here. You have been sooo helpful since I wandered on this past year. All your different experiences and helpful strategies dealing with all that goes into our dx and tx is golden. Thank you, thank you. Thanksgiving blessings, Peg
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To all my wonderful "sisters" here. You have been sooo helpful since I wandered on this past year. All your different experiences and helpful strategies dealing with all that goes into our dx and tx is golden. Thank you, thank you. Thanksgiving blessings, Peg
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Kiwi. Your weather sounds good. Eat better than here.
Is everyone getting a jump start on tomorrow's thanksgiving meal ?
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I went to the grocery stores yesterday. You'd think they were giving stuff away. It was insane.
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Hey, I have a question about PET scan results. When my doctor gets them, can he tell how big the tumors are from the scan? I never asked about that on my first scan. I only know how big my primary tumor was estimated to be, and they had that number from the mammography and ultrasound.
Does it make any difference how big the tumors are initially, or is the main thing just finding out that they are shrinking (or growing)?
When do tumors start to affect quality of life?
(sorry about all the questions...)
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