Bone Mets Thread
Comments
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I found that I was so drained after my rads, that I started consuming huge quantities of sugar. I'm trying to go ketogenic again, but it's only my second day...and there's homemade chocolate cake! How cruel is that!
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A contrarian POV on the chocolate cake... Have a small piece, savor the taste, enjoy the pleasure it gives you. Life really is too short, particularly at stage IV. Happiness is potent therapy for the soul, and perhaps, for the body too. Just my experience with 4+ years of NED, not to be taken as medical advice 😊
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Good morning all,
Patty - so happy you popped in!
Myra - sorry about your aches but travelling and being busy with a bundle of joy could be the cause that makes it all worth it. Wishing you the very best with your upcoming scans.
Pets and chocolate (in moderation) are good for the soul.
Mommal - Dani inspires me with what she does for others. It gives me ideas to get off my butt and find something to be helpful to others. It will be part of my life reorganisation!
I'm feeling better, not crying anymore. I'm in the anger phase which is good, part of the grieving process.
Wishing all of us a good day.
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Welcome to all the newbies. As others have said, this is a wonderful group of people. I am sorry you have reason to join us, bit you will find a lot of support and helpful information here.
I feel that we have had a big influx of new people lately. I am happy you have all found us, bit it is a sad reminder of the fact that mbc just keeps on spreading.
My DH will have his MRI on Monday, and we will meet with his PCP on Tuesday morning. He will refer my DH to the appropriate specialists for the next steps. DH is taking things well. I am trying to be strong for him.
Jazzy, a dog will be a great addition to your household. I love the excited, warm welcome that a dog gives when I come home. Dogs are so accepting, and stroking them is so calming.
Aurora, How are you doing? I hope you are feeling better. Do you know how soon you will be going home?
Linda, I am glad you are doing better. I think the anger phase might be my favorite part of the grieving process.
I have been trying to eat more healthy foods since my diagnosis, but CHOCOLATE, yum. I do give into that temptation now and then. I don't feel the least bit guilty about it. It is delicious, and I savor every bite.
I will check back in later to catch up with everyone. This is an incredibly busy thread.
Lynne
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Hi everyone and welcome to the newbies. Lynne I'm doing better after the scare last weekend that I had MRSA when it was just a big seroma ( accumulated fluids) it looks like I'll be going home soon but don't know when yet. Keeping up with the posts and sending everyone healing thoughts.
A
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Thank you everyone for the warm welcome to this group on behalf of my mom. And thank you for the recommendations for places I should check out on this site and for resources on BRCA2 gene mutations. For myself, I am definitely contemplating getting both removed and likely everything removed. I don't have children yet but there is way too much cancer in my family - my genes are bad - that I think I am OK with not having my own.
My mom is having a biopsy today but won't know any details until next week. I think that the purpose is to determine if it's the same type of cancer as her original dx. If so, it will alter what treatment she is on. I took her shopping and to get her nails done this past weekend. It's heartbreaking since she doesn't know that I know and it will be a secret until after the holidays. Poor thing can't walk too well (she's not even 60) and I found out it is in multiple bones - hip and spine included. My dad told me that her team is very optimistic that they can contain it in the bones and that she will have many years. Of course, the doctors could be saying this(or my father could be relaying this info to me) since the dx is very recent and trying to keep her positive.
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Hi DaughterLove. From what I hear from my MO and from seeing stories/people here, the doctor's aren't "just saying that". The one thing to hang on to is hope.
Also, after the biopsy, they may give her radiation to help with pain. And it does help. Kudos to you for being proactive on your mother's behalf.I am going to post this elsewhere too, but thought it was worth posting here. I object to being called "brave", but this puts a new perspective on it. So perhaps I am brave.
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I've been home for a couple of days now... intending to catch up on the multiple pages I've missed... but just unable to get to it. So I thought I would at least pop in to welcome DaughterLove and I think there are one or two more newbies (sorry I can't address you by name yet).
Daughter, as scary as your Mom's diagnosis probably sounds, there is much reason for hope. Although they can present major issues such as painful fractures, bone mets alone are seldom life threatening, and many women with bone mets do very well for years. So, no, her doctors aren't just saying this, and it also sounds like they are on top of her situation.
Love the newest photo of darling Mallory! And love the dog pix Txmom shared! That's about the limit of my input for the moment, but you are all in my thoughts & prayers, and hopefully I'll be back up to speed soon. Deanna
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Glad you're back home Deanna. Get some rest and take care of yourself!
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Daughter, I can imagine how difficult it is for you to try not to let your mom know that you are aware of her diagnosis. I understand why she wants to tell you after the holidays. When I was first diagnosed in June, I kept it from my children, too. I wanted to have all the information about the dx as well as a treatment plan in place before I told them. I didn't want them to panic or to ask questions that I could not yet answer. I was in a great deal of pain at first, too. I was weak and had difficulty walking due to pain from all my bone mets. (I was stage iv right out of the gate. I was originally misdiagnosed with polymyalgia rheumatica because the pain was similar.) I am now virtually pain free, and the mets are under control. I am telling you this so you don't lose hope. There are many people who have had this disease for many years. Many have not seen spread beyond the bones. Some have had no evidence of disease for a long time. Each person is different. Your mom is lucky to have you by her side.
Lynne
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Thanks, Terre. I honestly have to tell you guys that I felt pretty "normal" while we were away. Some aches and pains, but overall I think I did better than I do at home, which was a surprise and makes me wonder what it is about my usual surroundings and schedule that maybe are not helpful and were good to be away from for a week, in spite of hotel beds and early morning commitments I didn't think I'd be able to manage, but did.
Oh, one of the highlights of my trip was meeting a BCO sister I have had an on-line friendship with since 2009. Thankfully, she's not mbc, so isn't on BCO much, if at all, now. But we had a great breakfast together!
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Milaandra - my lymph edema therapist is a licensed physical therapist that specializes in lymph edema care, but that therapy is only about once a month due to insurance limitations.
I wear a compression sleeve that was custom made for ME after my arm was measured at several different points, plus I have a gauntlet for my hand too. The particular sleeve I have
is a beige color close to my own skin tone, but the different companies that make compression garments have colors available too. There is also a special quilted sleeve you can wear at night,
Although the compression sleeve is not that pretty, is sure relieves the swelling and the fabric it is made of is made to help wick off any moisture.
If the excess fluid isn't kept out of the tissues of your arm, you're at a great risk of getting an infection. I was admitted to the hospital last May for a Strep A infection in my arm and spent 3 days
inpatient on I.V. antibiotics, plus another 5 days of going daily to outpatient treatment with I.V. antibiotics. I had a 103.1 temperature and was so miserable until the docs found the antibiotic that
would work for me. Very scary stuff. I hope this info. is helpful to you.
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But other than the sleeve, what does the pt do for you?
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Thank you for the encouragement and nice words Kiwicat, dlb823, and 50s girl. I am happy to see that you are all so optimistic and 50sgirl, that you are almost pain-free after the original dx and good medications.
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Milaandra, I have not had lymphedema but I had a friend who did and I took her to PT all the time. The therapist did very gentle, almost light touching of her arm to keep the lymph system moving. She had a few exercises to do at home. It was remarkable the change she had in swelling in addition to wearing her sleeve. She ended up getting a colorful one. I encourage you to check out the PT and she what she/he has to offer. Did your MO recommend it?
Deanna, What a lovely picture of you and your BCO friend. So glad that you had a good time and felt pretty good!
LindaE, You are right, anger is an emotion that is easier to deal with than tears. Do something special for yourself this week.
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Lindalou, I love that message. We are the storm!
Lynne
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I saw this today and have posted it elsewhere, but thought it fit here too...you share your heart on these boards and get lots in return.
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Daughterlove, I was diagnosed with hip mets in May. Stage iv at the start. I was in so much pain and barely able to walk. I feel perfectly fine now, no limp, no pain. My hip has healed so have the 2 small lesions on L4 and L5. I did not have rads, just Taxotere, Herceptin, Perjeta and Zometa. Deanna, super cute pic. So glad you got to meet your friend. That is really special.
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JazzyJune, I had a cairn terrier for many years and she was the best dog ever. Personality is an understatement! She had all the neighbors charmed and they would sit out on their porches with dog biscuits for her when we'd go for a walk at night. Some people even bought her matching furniture because she didn't like to share. One person bought her a day bed, another an ottoman, and a third a recliner. It was funny to people that she had a recliner of her very own that no one was allowed to sit in. Please share pictures of your dog when you get one.
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Milaandra - My therapist does gentle massage of first my abdomen, then moves to my scapula and arm to get the built up lymphatic fluid moving towards my torso. Doing this reduces the swelling and doesn't allow the fluid to sit in the tissues which increases the risk of infection.
When I ended up in the hospital with the Strep A, I had a hangnail on my left hand and 11 mosquito bites on my body. So any of those could have allowed the bacteria to get into my body. At least that was the Infectious Disease doctors' opinion.
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Orlandoan - I had my last Cairn (Joey) for 14 years. He was quite a character too. I am looking forward to my new puppy. Even though he isn't even conceived yet, I've bought fleece fabric for his first blanket. It has little Gray & Black Scotty/Cairn type dogs all over it. I already know what food I plan feeding him, etc. Even have a name list started. At this moment March/April feel sooooo far away. This dog will be my therapy dog, so we'll have to go to training.
The literature about Cairns says that they are not lap dogs, well my Joey sure never read that.
Have Good night!
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Just popping in to say hello and oh my I'm behind again.
Myra, welcome back home and I can imagine that your time away is tiring but geez Mallory is adorable! Sorry about your aches and pains, praying for good scan results!
Momallthetime, you're so sweet and thank you for all your kind words. Whatever you think might be worthwhile reading for me regarding my MS I'd be happy to check it out. I may have already read it but you never know. Thinking of you and Dani and praying for things to turn around for her.
Patty, so nice to see you pop in! Do you have any idea how much you are missed? Your absence is noticed and we always think of you. Glad you're feeling better!
Deanna, what a beautiful picture and I'm so happy to hear that you felt normal while you were away. How nice you got to meet a BCO sister, sounds like you had a nice time.
Aurora, glad you're doing better and I hope you get to go home soon.
Terre and Lindalou, loved the posts.
Linda, thinking of you and sending big hugs. The anger phase is good, let yourself feel whatever you need to.
Hugs to everyone here, Annie
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Deanna - hey we missed you. How wonderful to have good true friends. Good for you. Could it possible be that when you are out with others you force yourself even if you are not feeling just so, and when you are home you let your guard down?
DaughterL - my daughter has mets a few yrs already, yes now it's very spread, but she still manages her life, some better days some harder days. It's great that they did the biopsy, of course they could target the tx better this way. If you are really contemplating doing a hysterectomy/oophorectomy, make sure you get all your options first, get tested as you say in a class A place, discuss it, have a gyno-oncology do the procedure if possible(that's who did it for my daughter), but maybe you also wanna consider about egg freezing, I am just putting it out there for you to know that you being so young, you may think one way now, but in a few years things could change and you don't wanna have any regrets. Are you in a big city? That would make things easier.
Linda - How shall we put it, you are a warrior, as Lindalou's post says. And I am so happy that you would try what Dani does, she is smart cookie that one, I tell you, she knows she cannot spend too much time thinking, she literally tries to keep busy all the time. (smarter than mom, I am drowning in my thinking).
Do you guys know that just for one Gamma Rad, they got paid something like two hundred thousand dollars. Yep, true true.
Mary what can you do for your pain? Did you ever use Dilaudid, it helped Dani a lot. You should not be uncomfortable.
Patty Patty - what's up babe?? How can we help you??
Au - your spirits are so uplifting, please keep it up, and yes it's gr8 it wasn't the scary one, but they better watch now. Counting down the days.
Terre,you know I printed that ONE TOO! I think I may give it to SIL too. Oh those demons!! So true.
Jazzy really too bad you have to deal with that, as if you would not have enough on your plate.
TM's came back, a trickle better, so I bit my tongue, and we are counting down the days again till the new scans, 5 wks. Dosage was upped, prayers checked, and NOW WE WAIT. Day by day...
Night, night everyone
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Hi Momal, thank you for your response. Freezing eggs is an option. I'm in Boston and plenty of great hospitals to choose from should I go that route. I'm sorry about it spreading with your daughter but it's good she and you are staying positive and I hope she doesn't have a lot of pain.
TXmom, thank you for sharing your story. I don't know exactly how many bones it's spread to yet but hopeful it can be contained for many years. I don't like the odds of 2-3 years you read everywhere. I'm glad you are virtually pain free from original dx. I'm hoping my mom qualifies for the best treatment (she has a team at a Dana farber institute)
My mom's sister had a similar diagnosis at 36 (my mom was 54, now 57) for the initial breast cancer. By 41, it moved to her lungs and she passed. Of course this was in 1997 and I know meds have come a long way since then. She also left behind a daughter (she's now in early 30s) so we'll be going through genetic testing and our options together.
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annie - hugs right back to you
Lindae- hugs. Thinking of you. Hoping you are staying busy. Time is the best medicine. Wish I could come pick you up and we would go hit the town. Laugh and dance til we fallasleep from exhaustion.
Dlb - where did you go ? Nice pic. You look amazing ! How exciting that you got to meet a bco sis. Is this the 1st timne y'all met even though you been friends since 2009?
Kiwi - pic too funny. Thanks for sharing
So many new people I don't know. Take a couplke weeks off and our bone mets family has like tripled in size. Can't wait to get to know you each better
Hugs to all I know and missed.
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Hello all!!
To the new ladies here, welcome! I am sorry that you are here, but it's a good place for support, for good times & bad.
Patty, so good to see you & hear that you're feeling better. I hope this is the new direction for you.
I just wanted to check in. Good night. Cheers, Dee
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good night dee
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Hello all,
Mommal - TMs going down! Keeping my fingers and crossed for you and Dani.
Jazzy - that puppy will certainly be a happy one! They are so cute and bring so much joy.
Patty - hitting the town virtually together OK? I'm going out for lunch with girlfriends today. A good meal with good company is one of the best medicine for me.
Deanna - thanks for the pic. Wow you look good!
Daughter - Stats are outdated and yes as you say there are many other meds now. Those stats do not take the new meds into account. Your Mom is lucky to have you.
Dee, good to see you and hope those allergic reactions are a thing of the past.
Cristina - haven't seen you in a few days. How are you?
Had rads on Monday to femur, seems to be working already!
Sending hugs all around.
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Linda. I like the idea of us virtually hanging out. I hope you enjoy your lunch today with your girlfriends. Good friends good food good times. Are you taking radiation everyday for a period of weeks?
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