Bone Mets Thread
Comments
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Hi Linda,
Yes inhumane wind chills tonight. I keep thinking about all the people who live on the streets and try to survive in this weather. I've often wanted to take some home and let them sleep in our spare bedrooms, but my DH about flipped the first time I mentioned this. Last winter, on a sub-zero day, I saw a very little old man standing on a corner panhandling for money. He looked harmless and very sad and I almost pulled up and invited to take him home. I didn't bc I thought I better ask my DH first. When I mentioned it, he looked at me like I had lobsters crawling out my ears. He truly thought I lost my mind. Don't get me wrong, he's a compassionate man and works in our county hospital with a very poor patient population. He is always doing good deeds, but I guess bringing a stranger into our home was NOT such a safe idea.
Anyway, I really hate this awful weather, but mostly bc of the homeless. I even feel sorry for the animals and birds. I feed bunnies and squirrels in the winter and provide fresh hay for bedding. I guess I am a little crazy. Oh well.
Amy
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Hi ladies,
My onc did call again. She basically said that since April my scan is worse but since June it's about the same. She votes not to change treatment at this time. I asked her then why am I in so much pain and she said the radiographic evidence doesn't support it but she isn't saying that I'm not in pain, there's just nothing she can see that would explain why it's worse. I had to push her to talk about the CAT scan. She said some nodules in the lungs went away and one is larger, from 5 to 7 mm. She said they see hypodense areas in the liver but again they are too small to be able to tell what they are. Basically, she feels the treatment is working very slowly but she also wants to see the rest of my spine, so I scheduled that for Jan 20th (thoracic and lumbar). She said she's going away for the rest of the month (will be back on 25th and 26th for appts) so don't expect her to read the MRI very quickly. I don't know, I'm not feeling very good about things but I'm not feeling awful either. Kind of "meh." I can't get medical marijuana from her as she doesn't have the ability to prescribe. I basically have to create a relationship with one of who can prescribe and then they can vouch for me and I can sign up which has a registration fee as well. Then that doctor can give me a prescription and I can go to the dispensary. It all sounds like so much trouble that I haven't pursued it much. I appreciate you guys keeping me in your thoughts. If I was to pursue some other treatment for my neck, where do I even begin? What kind of doctor might operate on my neck? Thanks for all the support.
Milaandra- I like those diet descriptions. I think I could do your diet. Where do I find "quark"?
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cristina - a neurosurgeon would be your best bet.
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Cristina - I must say I feel you are being such a pro with this mess with your Onco really. They know stuff, why would they put you through so much to get info. It's vile, I really think so. My sister had a MRI for the brain, she was really worried, she could not get any info for 2 full days, bcs it went into the weekend, but the doc knew immediately, (he got a verbal), so once he knew he DID NOT feel it's important to let her know asap. I am a nice person,well sort of, but I love to believe there is such a thing as Karma. This business of worse progression at first and then the June scan, that is what happened to Dani, but it doesn't make me feel gr8 about it. It is something at least to hold onto. She is probably right about keepg the tx, how about doing a PET/CT in 2 mos (prob sooner then planned so you could have an idea of what is going on)
Amy had a good idea about rebiopsy, would that be a possibility?
Holley, she was so incredible. I am really down now, listening to sad songs, and crying for her and for everyone. She was a true heroine. Oh, the pain. I sure hope Dani does not see it. But i know she will.
Linda - warm hugs sweetie.
Hindf - so happy for you. Ahead you go now.
Annie to see that quilt, the colors, how much love. Beyond.
Lovingis..- so sorry about your brother, how do you do it, caring for yourself and thinking of him. Did you have the BRAC test done? I would like to know for myself. Dani had it done, it was negative, but bcs she got BC at such a tender age, just 25 I worry for her sibs. (they are being checked anyway)
Jazzy no navigator, but sil could be persitent, i'll mention to him he will badger the Ins.
Deanna hey about time for you!! great.
Who could tell me if I should insist on Rads for the skull mets, there are 4 large ones, it did get a bit smaller with the last tx, and its "stable", I am so scared it should not get bigger. Her TM's went up again, she did start on the 11th IBR/LETR- Onco wants to see if THIS tx will help that area too, but I did not discuss it with a Rad Onco, maybe we should?? Which part of the body should I worry most? I do wish we could not think about it for one minute. I can't.
BT is weekly, she will go to her local lab. For the ladies that are on this tx, how low would your WBC be so they halt tx? Her WBC was 3.0 today. You also get BT weekly? Deanna I know you told me it's the whole with the granulocytes, her neutrophils were not good either. I just wanted to be prepared.
Dee hoping for good scans!
Annie, denial is the best. Go for it. We are cheering for you and to hear good news. Step by step.
Take care my dear ones.
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cristina. Whew. You had me nervous. Sounds not so bad.
Dee. Love the new pic ! Stable is an awesome word. Yes !
Dh bday was today. I ran mny errands , hit the grocery store, and took him to eat at O'Charleys. Full day. I am exhausted ! Hurting too much to sleep. It was worth it
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Dee - congrats on stable and improving! That's awesome news!
Apologies for not addressing anyone else; I'm exhausted and too tired to think...but I do read!
Hugs,
Terre
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Cristina, most North Americans use cottage cheese for the mixture. In fact, the common short form is FOCC - flaxseed oil cottage cheese. There is a YouTube video about how to make it. You need an immersion blender, and I recommend stainless steel, because the oil stained my old plastic ones. You also need a little coffee grinder to freshly grind the flaxseeds. I wish I could get wild blueberries here, because those are a nice addition.
If your onc doesn't think there is need for surgery, have you asked her about oncological acupuncture?
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Amy, some people end up on the street because they have chemical disorders and fall through the cracks in the system. Better to volunteer at a shelter, or drive around with a trunkload of sleeping bags, hats and gloves you can give them on cold nights.
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Dee! So I can come to you for inspiration as I try to get back on the dietary straight and narrow! That's fantastic about your weight loss.
Is it possible that you are getting migraines? Are the headaches associated with any nausea?
Will they do a brain CT to be safe?
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Thanks to everyone for the encouragement about my scan, you have no idea how much I appreciate the support.
Annie & txmom, best thoughts for your scans, I totally get the scan anxiety, but for me the worst is the waiting afterward.
Just seeing all the pics of the quilts reminded me of a quilt that a friend & her friend (whom didn't even know me) made when I was first diagnosed in 2008. I will have to dig it out of the trunk & take a photo. They did such a beautiful job, putting a little victorian house on it, because that's what we lived in then & all the colours were ones I loved.
I too am reading everything, even though I don't name everyone, you are all in my heart. Terre & Patty, you are both going to have to get caught up on your sleep, it's important. Mom, I have no advice for you about the rads ((hugs to both you & Dani))
I'm gone for TM's tomorrow. Fingers crossed for good results as they are very reliable for me. Cheers, Dee
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wow. Very quiet in here today. First time ever I think this thread was on the 2nd page. Hope people are just enjoying life to much to post.
My dh home with a stomach bug. Trying to keep him quarantined in the bedroom .
Hugs all around
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Milaandra, I know you're right about reasons for homelessness. I like the idea of sleeping bags and volunteering at a shelter. I've done something similar to this many years ago and should do it again.
Thanks for the kick in the pants...I needed it.
Amy
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Amy, I've often had the same thoughts you have about wanting to offer a guest room to someone who appears down on their luck. But in a recent discussion about homelessness, a friend of mine shared that someone who lived just 3 blocks away from her was murdered by the homeless woman she'd taken in. As Milaandra said, definitely too much mental illness out there, often not obvious upon casual interaction. Thank goodness we both have sensible hubbies!
Dee, I literally had a wave of relief when I read your "stable or improving" just now! Such great news!!!
Cristina, the news from your onc sounds very promising! Ibrance (if that's what you're still on) does seem to work slower than many other drugs. I know when I first read some of the trials information, I was surprised to note that some women didn't really get much response until 6 or 8 months into it -- and then it was pretty dramatic. One question though... if you still need to do lumbar and thoracic scans, what was the one you just had done? Was it just your neck? And as far as the pain, maybe you're just not on the right pain meds for you???? Maybe you need to switch things up and try something different. Also, your situation made me think of a Doctor Radio program my hubby reported hearing around the time I was first re-dx'd and dealing with all sorts of weird pain, about how bone mets pain can be very difficult to pinpoint because it isn't always coming from where it appears to be -- which was true in my case, with pain shooting up my shin when what I had was a fractured femur.
Happy Birthday to your hubby, Patty! Maybe it's good he's under the weather today. No doubt he's under stress and a day or rest might be good for him in the long run. Just hoping you don't get what he has!
Just figured out I'd lost this thread from my favorites, so need to go back and see what I missed since yesterday...
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hello deanna. Hugs
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Hi all
I have been reading more than posting lately.I have struggled with some nasty long migraines. Today is a good day. No head ache and just finished a quilt top for my niece.
So sad to hear about Holley Kitchen it has kicked me in the gut.
Thinking of everyone and wishing you peace
mary
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I wanted to chime in on helping the homeless. A young woman from my town takes her husband and children (and friends) down to Love Park in Philly a couple times a year to drop off donations. We collect warm clothes, toiletries, blankets, towels, etc. People also donate food to hand out. It's always very peaceful and organized and during these below zero nights, it's very much needed.
Here's a link to her event, if anyone wants to take a look and do something similar. It's rather incredible.
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cant imagine how cold it is to the homeless in PA. Brrr. How sad.
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This is what I love about this thread.... here's a group of women who have MBC with all it's ups & downs, who are worried about what to do about the homeless in their communities. Wow, Love you all. Cheers, Dee
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just figure out how to add a photo. quilt top for my niece. My favorite quilter retired so i will have to find a new one.
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Good morning all, back from my break. Missed you all. How is everyone?
Myra - thinking of you and wondering how your appt went on Monday.
Congrats on the good results for Wendy, Chelle, Dee and I may be missing some...
Patty - how are you today?
Aurora - thinking of you as well. How are you doing? I hope the infection is a thing of the past.
Deanna - good luck with Xgeva.
Sending hugs all around
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Good morning,
That is a beautiful quilt top! Hope you can find someone who can help get it finished for you.
So glad to hear that there are some good test results coming to the ladies in this group! Dee, you are so right. This group is inspirational. We have a 4 degree day coming up on Sunday. It would be a good day to deliver some jackets and blankets.
As far as dietary changes go, my daughter wondered about using essential oils...so I'm drinking lemon water in the morning for liver cleansing and applying frankincense to mets locations. Also including hemp oil in my smoothies...it has no CBD or THC and is sold in health food stores. I do have a concern about substituting soy granules for meat due to the estrogen issue. I found some that are non-gmo, but will ask a nutritionist to make sure. I also found yogurt made from non-gmo fed or treated cows. Food appears to be a mine field. Sugar is very unappealing when I think of it in terms of my mets liking it!
Monthly doctor visit tomorrow and hoping for "steady" news. The 100mg Ibrance is having fewer noticeable SEs than the 125 mg did, but I do want it to work.
Grandkids are coming for the long weekend! I'll probably pass on the ice skating, but will be in charge of hot chocolate when they are done. Three days of hugs from children and not thinking about cancer sounds like heaven :-) Sending healing thoughts to you all!
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Hi ladies,
Just trying to make sure my pain meds make it until Jan 19th, when I get more. Let's hope I can make it. Eeee! I've been taking more than prescribed bc my oncologist told me to make myself comfortable and I did communicate this repeatedly to my pain management. They promptly sent in an Rx, but my insurance said it can't be refilled until January 18th!! ooh, the 17th and 18th are going to be tough days
Anyways, I hope everyone is doing ok. I felt a little inspired and cooked last night. Unfortunately, the food tasted really salty to me, even though I followed directions exactly. I think too much liquid evaporated. I also make a green smoothie last night and made my daughter drink some. My son, who is 3, took some too and drank a spinach/apple/ginger/celery smoothie with a straw and seemed to like it! I made my daughter a spinach/banana/almond milk smoothie. I heard ginger is really good for cancer so I put it in the smoothie. I guess it can't hurt.
Going to try taking some ibuprofen now, maybe that will help w the pain.
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Hi everyone, I hope you're all doing well. The oncologist called my brother to tell him that she might hold off on switching him to Doxil right away. She wants him to do 1-2 more cycles of Gemzar, because the scan actually showed improvement in some areas and worsening in other areas. Overall his tumor markers have gone up since September, from 42 to 62. I'm guessing she wants to follow the markers a couple more times before changing treatment. Is it normal to switch treatments in between scans?
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Hello to all,
Mary, the quilt top is beautiful. I have a new found love of quilts ever since I received mine. Something about them is just so comforting.
Linda, welcome back and you were missed! You bring such beautiful energy to the thread, it's nice to have you back.
Iwrite, I've been using essential oils for about a year now. Frankincense is my absolute favorite, and I too apply it to my mets sites every night. I jokingly say I can't sleep without "Frank". I also use peppermint oil for pain, it's amazing and has anti-inflammatory properties. I diffuse a bunch of different ones too, lemongrass which is said to be very beneficial for breast cancer and also myrhh and helichrysum. They just make me feel good so it's an added benefit.
Cristina, the smoothies sound yummy. And yes ginger is really good for cancer as well as aiding in digestion. I find Ibuprofen taken with Tylenol works extremely well for pain and even used them for all of my surgeries. For me they worked better than narcotic drugs.
Lovingisliving, I'm glad your brother's oncologist is staying the course with Gemzar. Treatments may be switched in between scans, it really just depends on the oncologist. Praying your brother's next scan shows much improvement and that his tumor markers begin to fall.
Hugs to all, Annie
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CJanet,
If your Onc writes the prescription for a different dosage, the insurance company will pay for it. This has happened to me several times when I needed to go up or down in meds strength. So, pester your pain management folk and tell them you need more.
And, if the insurance is still obstinate, ask for the cheapest possible formulation, and self pay. I did that once, and each pill was about 25 cents.
There is no ethical reason for you to be in pain, and you have every right to demand relief.
In addition to your rightful pain meds, have you tried ice packs? They really help me for spot break-thru pain.
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Dee fingers crossed!!!!!!
Mary i know you were asked already, but would you try migraine meds? I get migraines all the time, there is no amount of advil that will help only when I take Imitrex( or you could have many different ones), if I just take advil thinking it's a headache i always regret it. Because it takes time for the Imitrex to work, but if it's not, i would say you should really have it checked out. there is no reason for you to be in such pain and discomfort.
Patty I never used to pray that I should have strength but now I do, bcs if I collapse...so with you, now you have to feel good with hubby down, agh, praying for you girl
Milaandra Milaandra, but you know yesterday with very cold and windy in NY,(nothing like in MN..)i was driving in my cozy car, passed bus stops I really really wanted to stop to pick up ppl, but it could be a bad idea. Unfortunately. Yep, donations, it's a gr8 idea, we just gave 3 bags of gorgeous stuff from the girls,supposedly it goes directly to those that need it.
Holey, gosh I miss her. I think it was great that showed she was angry and no it's not ok not to be up with the research being that money is not going much that way. But i must say I was pleasantly surprised when I saw and advertisement in the magazines for Mets. It was not there a yr ago.
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Moma and Mary, I use Imitrex too but have also used Maxalt which comes in a dissolvable tablet ( great when you are nauseated) and Relpax. These all work for a limited time and then there is the danger of rebound migraine. I have also tried acupuncture with limited success. My migraines sometime come with an aura which can be disturbing the first time you get one. I thought I was having a stroke! Now I take a RX the minute I feel one coming on and have actually reduced them to only about 15 days a month which is good for me. Hope you find something that knocks them out for you.
Wishing all a good night and peaceful sleep.
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momallthetime and Lindalou.
Last visit to mo was diring my awful migraine and he wrote a script for imitrex so I will try it next time. This last migraine just lasted too long.
Just found a new quilter today and should have my niece's quilt back in about 3 weeks.
momallthetime you sure show strength. often. I wish you all the strength u need for you and dani and your grandchildren.
peace to all
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Hi friends! I haven't updated in a bit. Was given confirmation that Mom is her 2 positive. Though I guess I figured with the extensive mets. She now has Arimidex and Faslodex and will start Herceptin and Projeta on Monday. Her oncologist wants to save Taxotere for later because of her healing fractures and immobility. She was able to stand for a couple second the last few days. Her spirits are good, mine are not. Ugg.
Thinking of you all. Love and hugs, Nikki
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GG27
Can you tell me how much tylenol you took together with how much ibupropen.
I had read that someone else said that this worked better than narcotics. I don't want to take
narcotics because of the constipation issue.
I really appreciate your help
Rosieo
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