Bone Mets Thread
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it does Lita thank you. I did have coffee with a little cream but finished it by 8:30, my scan is at 10:30 tomorrow so hopefully that won't affect it. Am kind of sick to my stomach so have only had two scrambled eggs today and they aren't sitting well. I wonder if chicken or beef broth would be ok
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What did the Onco mean when she says that it's obvious Dani does not respond well to hormonals. I understand because of the constant progression, but my question is, if some part of her cancer is ER+ strong, how is it that it did not respond to Hormonals?
Lita oh my gosh!!! You make me laugh so hard!! You are the best!!! You go girl! So glad you are coming along.
Lynne this sounds like so much fun, shangri la!
Gracie I read up on Dr Google and basically just said to keep it on lowfat dairy. Good luck.
D is also scheduled for a Pet/CT this week. Her Alkaline Phosphate is been going up, so what gives? Who knows to tell me? I am so worried the liver is going crazy. We'll def know more at the end of the week, but...
Deanna hope you are coming along.
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momall, prayers for Dani and you. Hope her pet goes well.
I had plain cream in my coffee. They have changed all of that because the recommendations used to be that you could have hard cheese too. Now they've done away with that.
They used to say Roquefort or blue cheese dressing was ok too because there are no carbs in them. Now we can't have that at all.
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Gracie - The dairy thing is new. Would you get more information on that and report back on the PET Scan Prep thread? So many things effect PET scans ...
>Z<
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I will Z...will see what I can find out
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yes, I've never been given dietary cautious before any PET. JUST A "don't exercise" warning. We did just get a brand new PET machine. Maybe my next scan will have that advisory. Strange.
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Well the dietary restrictions have changed, because they said no dairy at all. But MD Anderson still says hard cheese are ok. I'll see what I can find out...off the top of my head, I'd say it's the lactose in dairy which can turn to sugar in the bloodstream. Let you all know what I find out
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Gracie:
You have a lot of restrictions the night before your PET. I notice you are on Xgeva, how is that going?
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Is the problem that sugar we eat competes with the sugar tracer dye that the test relies on, and so as a result, the scan is less sensitive than it could be?
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I guess that makes sense
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I assume that is the reason, Cure-ious -- the only real glucose the cancer gets should be the radioactive stuff, so they can see the uptake on the scan. My NCCN cancer center prescribes a very limited, high-protein pre-PET diet starting early evening the day before until the 8:00 pm cutoff time for a morning scan (only water after 8:00 pm): Eat only meat, fish, poultry, eggs, nuts, broccoli, green beans, black coffee, diet soda, water. No sugar, bread, cereal, pasta, rice, other vegetables, fruit, dairy, alcohol, mints, chewing gum, vitamins. Earlier in the day I eat lower glycemic things and de-emphasize carbs. Don't exercise, don't get chilled.
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hi girls just a quick question has anyone with extensive bone mets done any long haul flights? Flying from Aust most places are 7-24 hour
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I haven't had anything that long. But, be sure to get up as often as you can. Buy the most comfortable seat you can. Check with your doc about taking lose dose aspirin for blood clotting. Oh, stay hydrated, too!
Enjoy!
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I was in an SUV for about 9 hours driving from Bay Area to Palm Springs. We were able to stop a couple times so I could get up and walk around.
The thing I would worry about the most is getting some cold/flu bug on one of those long-term flights. They re-circulate the same old nasty air. Might be a good idea to wear a mask. I'd wear gloves, too
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thx girls for your imput
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will post in the pet scan thread too...long and short of it... girl who told me a dairy was strictly prohibited was completely wrong!!!! Dang I could've had hard cheese yesterday!!!! I found out it's OK to have cheese it's OK to have cheese slices as long as you do it in moderation the girl that told me that no dairy at all was way off base because that is absolutely not true!!!!!
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Delvzy, I have flown from NH to Hawaii and back with my extensive bone mets. (I tried to leave them home, but they refused.) My MO told me to get up and walk the aisles every 1 1/2 to 2 hours. This not only helps with the stiffness that most of us are prone to, it also increases circulation. He also said to stay well-hydrated as others here others have already suggested. To cut down on germ exposure, I wiped down all the surfaces such as the snack tray, arms rests, seat belt buckle, etc. with antiseptic wipes. If you have rewards/points that you can use to upgrade to first class, do it since that will give you a lot more room to change positions and stretch out. If you have a layover between flights, don't sit the entire time. Get up and move while you have the opportunity. Just remember, move, stretch, hydrate, and you will be okay on a long flight. Have fun. When are you planning to go?
Lynne
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thank you Gracie!
Z
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Hi everyone, I am a newbie to this very informative thread. I've just been diagnosed with three mets to skull, rib and sacrum. The largest is 11mm in the skull, and the others are very tiny (millimetres). The report describes them as 'low volume metastatic disease'. I have no pain whatsoever, and they were seen only after routine scans. I plan to inquire about SBRT, as I may be eligible for this.
Up until now, I have been on Aromasin, Faslodex and Zoladex. In the past I took Tamoxifen and then Arimidex/Zoladex after my first recurrence. Unfortunately I have not had much success with the AIs, as estrogen has always featured very strongly in my pathologies.
My oncologist plans to put me on Xgeva coupled with Tamoxifen. I am wondering how well others have done on this particular treatment. I'm sure I will find a lot of relevant information as I scour this thread; just need time! So my apologies for any repetitiveness. I'd also love to hear from anyone who is her2+++, though I don't know for sure if my mets are her2+. There's no plan to perform a biopsy at this stage, and I will continue taking Herceptin/Perjeta. I suppose it's all about finding the right combination of meds that will work for our particular bodies.
It goes without saying, I will do whatever it takes to remain stable for a very long time with a good QOL. But I admit that I'm feeling down as I enter into stage 4 territory, knowing that most likely my life will be cut short by this disease. I know it's not all bad, and I do look at the positives too. Reading your many stories gives me a lot of hope.
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Calcon - you've presented with minimal bone mets. stage IV a royal pain, but your prognosis is very good. it looks like your doctor is assuming you are HER2+ if you are being treated with perjeta/herceptin.
welcome.
>Z<
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Hi excuse me, sorry for being here, I don't even remember how i really ended up here, I was looking for something late last night I guess. But i wanted to let you know something about the limited diet and no exercise before a pt scan question, I know this because i had a pet scan where the lady tha took me to the scan was supposed to wheel me across campus, but she didn't. I was huffing and puffing ten feet behind her, for ever it seemed. When we got there, the tech was not happy, he could hear my breathing, and see my flushed and slightly perspiring face. He made me lay down for about a half hour. Because he told me, exercise and sugar can both make things light up, and also cause background enhancement. The background enhancement makes things harder for them to see,thats all, and as it is an expensive test, they don't want to blow it! Thanks and hi lita
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Thanks tomboy - any fan of Bowie is welcome here. One issue is brown fat. It's a kind of active fat that absorbs sugar when you exercise or if you are cold. Looks like cancer but it is not. If anything I hope this discussion helps people understand the potential for error in scans. I know we will all take it easy and stay warm for our PET scans ...
>Z<
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calcon, I am her2+ w/a single bone met. I started perjeta and herceptin every 3 weeks on 1/2/17, so far I've had minimal SE's (mainly just dry skin) and I felt the tumor shrinking within a couple weeks. Added Abraxane later after bad reactions to taxotere and taxol. I am half way through chemo and mammo/ultrasound confirm tumors/nodes are about 1/3 smaller w/a couple of nodes no longer seen. I've decided to go with the recommend lumpectomy and axillary node removal in May or June then radiation in the summer. I'm told I'll be on tamoxifen for the next 10 years but I won't start it for a few months.
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Hallo Ladies ,
So I have finally internet again had to move house and living without internet for a few days was a nice thing at least a break from the Trump crap. So I have been on letrozole for three weeks now and I have to say bone pain I don't have but I feel really crappy. Short of breath( does that mean lung mets now😫) and stomach a bit weird. So always lots to keep the mind active with.
So I read a study yesterday from MIT where some researchers were looking at what feeds cancer. I was under the impression it was glucose and apparently it is a source of fuel but they found out that the amino acid glutamine also plays a key role. So I googled where amino acid glutamine is found and right after stuffing my face with chicken I found it was in there along with dairy products and red meat and pork. So now I'm cutting this all from my diet as well. What's left besides kale I wonder.....
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I had a PET scan yesterday and thought I'd have to wait until Wednesday to get the results, which is my next appointment with my oncologist. Well she was so excited, she called me on her way home. She was almost giddy...the two ugly liver buggers are gone and all my bone mets, of which there were dozens, are sclerotic. I haven't had this great of scan since July, 2013 after my last IV chemo.
I posted this news in the Xeloda thread and Liver thread as well but because this thread is much more active, I wanted to reach out and let those of us with bone mets know how well Xeloda worked for me.
I was speaking to my pharmacy rep a few weeks ago and he told me the story of one of his patients who has been on Xeloda for 11 years. THAT is exciting. So just wanted to share the hope.
Take care,
Amy
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Amy so happy for you. And thanks for sharing.
Wendy, you bet. Kale and....meanwhile Onco freaks out if Dani so much as says she wants to watch what she eats, because she must eat, and eat stuff to gain some weight. So...hmmm(I don't know this is very unfamiliar territory for me
) But, one day they say toothpaste is dangerous for you, then they say oh no butter is great, then this milk is not good, next thing you know your salary is paying for organic stuff, it's a quandary. 0 -
Just stopping by to say hi! Wendy, I think I read something similar on a FB site. I tried to find the article but can't remember where I saw it. Mom, I agree, it's hard to know, what's good and not good. I do know that when I go to get my scans, I have to have a prescreening from the nurse and they always ask if I'm diabetic. She said more than half the patients they see have diabetes. So I do try to maintain a healthy weight, exercise everyday and watch the refined white food group. Speaking of scans, I had mine a couple of weeks ago and remain stable. My tumor markers rose though from 25 to 37 from last May...it makes me a little nervous. She moved me from every 3 months to every 4 months so next scans are in the summer. Hope everyone is doing well. I think of you all the time. I mostly lurk and pray. XO
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Wendy, for years I was a part time vegetarian, pescatarian. Never ate cold cuts and bacon (they have nitrates and nitrites), refused to drink soda pop....for what? I still got frickin' cancer! Who knows, I may have gotten it a decade sooner if I ate and drank whatever I wanted, but the fact remains there are plenty of women in their 70s and 80s who don't have cancer after decades of eating and drinking pretty much what they wanted within reason.
No, I'm not going to run out and eat BBQ pork and prime rib by the pound, but we are encouraged by our cancer dietitians to eat adequate protein. Beans and legumes are a good source, but they tear me up because of my diverticulosis. Poultry and dairy are a couple of things I can still eat without pain and other delightful digestive issues.
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Amy- best news!!!! Thank you for sharing!!!!
Babs
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Amy - so glad Xeloda is working. Many people on it, and many people will be. It's great to see your results!
txmom - also awesome scans! congratulations!
Lita - how are you? is the shoulder issue resolving or getting worse?
Wendy - I remember shortness of breathe early on with Letrozol. The joint pain came later. ;-)
I don't find the eating guidelines confusing or changing. Every anti cancer diet is an anti inflammation diet. The last word on anti-inflammation diets is Dr. Weil. There are minor variations and some specific foods that seem bad or good, but the Dr. Weil anti-inflammation food pyramid weathers the sands of time. He has meat, but not a lot. You want a diet high in plant products ... at least 3 cups of veggies a day. All the colors of the rainbow. Organic, if you can afford it, because they really do have a higher nutrition value. But we adapt to what we can do.
I don't think a bit of chicken hurts, nor occasional chicken glutony, but he is talking about lean meat 1-2 times a week.
Your posts are still hilarious which I take as a good sign. Thanks for checking in. I think about you. Congratulations on a successful move. If the internet is up, you must be settled in.
>Z<
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