Bone Mets Thread
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Letmywifelive
First off you are a wonderful husband that needs to be said. I know of so many woman whose husbands just left after diagnosis. For the ones that stick around and even support and help their wives they need a tshirt or a trophy or something. I don't think we make it easy on them and they are in great pain as well. So big hug to you.
As far as TMs my onc doesn't give them that much power either, says they are very often misleading. So enjoy the great news ,have a wonderful Christmas you both deserve it so much
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Letmywifelive- I agree with the others here...TMs are just one measure and their dependability is somethimes questionable. Go and enjoy life if she is feeling good and her onc thinks things are stable.
Hats off to the guys who stick around and love us even when we are falling apart! That includes husbands, brothers, dads, sons and boyfriends...a hug does wonders!
Tylenol with codeine had interesting SEs! Wildebeests and water buffalo coming up to my front door to get the sleigh bell decorations? Perhaps the problem is Nat Geo Wild + codeine.
Interesting comments from the surgeon to my DH yesterday...Dr. was surprised that I had been proactive in researching and suggesting an approach to my treatment and surprised that I had a positive attitude with MBC. He seems qualified and sincere so I was surprised that he felt this approach was weird.
So, what about a book where we tell the doctors what would be most helpful to us? I think the goal ion the book would be to encourage Drs to think of us as partners rather than patients who just nod, accept and have things done to us. Plus, it could encourage our MBC group be a bit more empowered.
There may be something already out that addresses this, but I haven't heard about it and I have heard many of us remarking on the "WTH factor" when we ask questions.
I could set up a survey and send out the link to get input from you all so we can collect information to let them know what we need. And do the same survey for doctors. You all can suggest which doctors to survey.
What do you think?
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Letmywifelive (we're going to have to change your name to "My Wife is Doing Great")
Fantastic results! My oncologists never did TM testing because they said it was unreliable.
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regarding TMs: my onc says he only pays attention to them if they majorly jump up. Mine have tripled since Feb, still under 2000, and he's not concerned. Most of that increase is due to the new liver and lymph glands mets, all are small.
Enjoy each day, each moment.
On a sadder note, one of my friends from church died this morning. She, another and I were all diagnosed at the same time, with different cancers. She was a single mom with 2 teens, one had just started college. The other one of the 3 of us died within 7 months of diagnosis, over 3 years ago. We called ourselves the Sister Warrior Queens. RIP, dear Diane
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Iwrite,
First of all-lol on the codeine + National Geographic combo!
Yes to the book! I do occasionally read a blog written by an oncologist who has bc. She had a great post to the radiologists pleading with them to remember that there a real person behind that image.
One thing I have found with my doctors (other than my oncologists) is they sometimes seem afraid to treat me. I went to urgent care once with a UTI and the np meeting with me used the phrase "you're above my pay grade." My mbc plus all my antibiotic allergies had him too scared to treat me. He wanted me to go to the ER! I've had other times I think the doctor has been less aggressive in treating something because of the mbc dx. I think they want my oncs to make the calls.
Then I had the urologist who assumed my bladder had been damaged by radiation and, thus, she could not help me. Very wrong!
They could use some tips.
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I write, yes to the book for me, too.
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Sattipearl, my condolences to you as you mourn the passing of your friend. It's so difficult I know.
Kathryn, Book is a good idea. When you used the word partner, I hadn't really thought about my MO as that until you mentioned it. I'm very fortunate to have a MO who not only partners with me but encourages it.
Amy.....do you have wedding photos of your daughter's wedding? Bet it was beautiful!
edited to add......Kaption....any results yet?
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So, I saw my doctor today. The scan I had Friday shows that I am not responding to the anastrozole at all and the bone mets are progressing. Next week I will start my new treatment - the one that starts with an F daily and the Ibrance for 3 weeks on and 1 week off. We'll give it 3 months then scan again to see if it's working. He is also going to do an MRI on my head, I seem to have developed what I thought was a lazy eye. It's weird - if I look up, one eye doesn't move as much as the other and I get double vision. Meanwhile, I'm flying to Kansas to surprise my kids for Christmas
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BonnieMen, so sorry to hear about your progression. Prayers for the next treatment working for a long time!!
If you're coming up to KS- be ready for really cold! But, enjoy your kids!!
My brain and neck MRI results from Monday: good news is- no brain lesions, no new cancer visible at all. They did see skull and cervical mets already known. The bad news is we don't know why my right chin and right temple are numb. There is evidence of ischemia in the right temple which can mean I've had a mild stroke. But, they can't be sure if it's associated with my current symptoms and it does not explain the chin numbness. So, next step is a neurologist. So, good news on the cancer side. Thank for asking.
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Thanks to all you ladies for your kind words. My wife's next set of scans are scheduled for late January. Keeping fingers crossed.
BonnieMen : Hoping you are just having a regular vision problem and nothing more.
Milaandra : Yeah that will be a cool name :-). We need people to have their quality of life as well, not only just live.
I feel very sad that she has to go through all this. She is really young (just 41) and what a nightmare she goes through. We also have a 10 yr old daughter who has no clue. Hats off to all of you in the way you keep your nerve and move on with life. I can not even imagine how hard it is. I would have been probably in hospital due to just panic attacks. It is incredible and sad that today humans can go to the edges of the solar system and smash atoms but not defeat a disease that has been around long before humans even existed.
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Letmywifelive: I'm about the same age as your wife and my kids are the same age as your daughter. If she ever wants to talk please feel free to share my information. And if you ever want to talk to someone, I will happily offer up my amazing husband!
With regard to being a partner in our own care I would totally participate in and buy the book! I just participated in a project with my MO and NP. It's about HER2 and treatment, but I'm really proud of the fact that the patient voice (mine) was treated as valid and important.
http://www.advancedpractitioner.com/narratives/her...
There's a companion journal article and I'm quoted often, which is a strange out of body experience.I think they did a good job of demonstrating how life-altering this disease is, and how practitioners need to understand that they are literally our lifeline.
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hi all, I am new to the board. Been lurking for about a week
. I am 36 and was first dx stage ii in April 2016, I had surgery and chemo but was restaged to stage iv in November. It's pretty much in all my bones. Pelvis, ribs, skull, spine, etc. I had a question about bone mets to the skull. In general Do they bother you? My scalp is pretty tender however my hair is also just starting to grow back from chemo.... so, not sure if anyone can relate?
Also, Just had a MRI for my brain and now I am terrified it's in my brain too....
Basically all the newbie freak outs!
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Bluefrog, what an amazing project to be involved in! Good for you, your doctor and np!
Cason, I have 2 skull mets, but they do not bother me and don't seem to worry my MO any more than other mets. The sore scalp can certainly be a hair issue, but it's worth mentioning.
Was there a specific reason for the brain MRI or just a baseline precaution? I've had 2, and they can be scary. But, so far all is ok in that area.
It's so normal to be scared. You've been through a lot in a short amount of time.
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Casun--I too have mets in pretty much every bone, including my skull. I do feel twinges of pain in my skull from the Xgeva. I attribute it to healing. It's hard to know when so much happens in such a short period of time and so many side effects accumulate.
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thanks!
Kaption - they ordered the MRI as a baseline I think because of the new new diagnosis of bone mets. (And my insurance denied the pet scan.....)
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Hi Bluefrog76,
It will be great to speak to you folks and will give me someone to share my thoughts and concerns with. My wife wants to stay away from any mention of this dreaded disease and I do not blame her. I will send you my number.
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Casun, so sorry you are here. There's a live stage IV group that meets in Palo Alto 2x per month in the evenings. PM me if you'd like details. This disease can be so isolating. It's good to have people you can share with. You must be so scared, but we're here for you anytime.
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I've been very lucky to find a PCP that specializes in geriatrics, palliative care, and hospice. She coordinates with my MO and although I'm not ready for hospice at this point, when the time comes I'll already have an advocate.
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Rachel- Great job on these interviews! I hope doctors are seeing this and using it in their practices. So glad life is at 95% for you!! You do look wonderful and happy.
(It's funny how this feels normal after awhile.)
I will pull the survey together and get it out there.
Thanks!
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hi all!
As usual I am far behind on posting, but there's a couple of things I wanted to add,
LMWL, my MO takes the whole picture into consideration when looking at results. There are lots of things which can cause one TM to jump, but in the whole picture, stable is good. Enjoy the holiday season!
Kaption, good news! hope they figure out the numbness. If it is an ischemic incident, it's scary but a warning sign, I'm sure your Dr's will give you some good advice.
Bonniemen, sorry about progression, hoping the new treatment will kick some butt!
Satti, sorry about your friend. ((hugs))
Kathryn, I always call all my care providers "my team" we are all in this together, whether they like it or not!! Good luck with the survey, I will be very interested to see what you come up with.
I know I missed a bunch here, sorry.... heading off to PCP today, tomorrow is infusion day & Tuesday is CT, bone scan & TM's in Vancouver and it's supposed to snow again, arrgghhh! I hate snow, that's why I live on the south coast, because it doesn't get cold or snowy here.... hugs to all, cheers, dee
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Dee - good luck with scans. Let us know how it goes. Fingers crossed for awesome results.
>Z<
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Dee, hoping for some wonderful scan results from you. Best of luck.
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Lindalou,
I posted photos on the Life Does Not End thread - here's a link: https://community.breastcancer.org/forum/8/topics/...
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Dee I'm hoping for some positive results for you try not to worry your new treatment will take care of those mets😊
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hey girls!
Today is my birthday. I'm 40 now. And I never thought that my next birthday celebrate to be on cancer's forum....
Love you all!
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HAPPY BIRTHDAY, BEATRIX!!! And many, many more.
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Lita, thank you - I always read your posts (comments?), you're lovely and wise woman.
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Happy birthday, Beatrix. Yes, many many more!
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Kaption, you were one of the first I started to follow.
Omg, you girls are my example to support my cancer friends in Poland and you don't even know, how much you are helpful for us. Really.
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Happy Birthday Beatrix!
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