Bone Mets Thread
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Sending positive thoughts to all of you - hope the blood work went better and the scans are good for you Terri. And Dee - hoping for good results and that Patty is recovering from the flu. And that all are getting your pain meds.
Health care here in NZ is generally free. You get better care if you have insurance (I don't) and you have fewer choices without insurance. I'm on two unfunded medications; arthritis and anti-depressants. The arthritis is $70 a month and the anti-depressant is $17 a month. Not expensive at all. Doctor's visits (GP) are $17.50 and oncologist, radiation, scans, etc. are free so long as you're willing to wait. If you want to pay yourself, a CT scan is on the order of $800 and you can get it done faster. However, I have no complaints with the speed of my scans - they get me in quickly.
The poor wee pheasant died last night. I feel awful about it. Poor little thing. We did our best, but it wasn't enough.
I've basically told my clients that they need to back off a bit. It's insane like this every Christmas in NZ..everyone complains about it. People are generally off work until mid-January, but want stuff before the break. This too shall pass. As for my husband's surgery, he's fine. It was an almost voluntary thing; nothing serious. And the meds have taken care of it. I'll spare you details, but will tell you that his surgeon's license plate is Poo Dr.
Now you know why I'm omitting details.Hugs to all,
Terrre
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KCM - Sorry to hear about the pheasant. You did try and at least it was comfortable for a while. I'm in Auckland (North Shore) and my doctor's office charges $59 a visit (for 15 minutes max) and quick to charge extra for referral letters etc. I'm trying out Melatonin at the moment (only available on prescription in NZ) and it costs $54-$60 (exact same product/manufacturer in the US is $6.99!!!) Really gets up my nose when I know how cheap it is in the US. I'm still working full time and hanging on to my health insurance for as long as I can. The premium is going up every year, but so far it is still worth it even though its over $300 per month. Hope you manage to catch a breather before Christmas :-)
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Your self pay scans are a bargain. I believe a PET in the US starts at $3,000.Sorry about the little pheasant.
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KCM, Sorry about the pheasant, I somehow missed that story... but that's ok. Glad the DH is doing well, I had to laugh at the license plate!
I was a bit surprised at the costs involved for care from NZ. The only thing I pay for here is some prescriptions & they are less than $400 per year, after that amount the gov't pays & my anastrozole is provided free by the Cancer Agency.
I had my first CT contrast & blood work through my power port today, hurt like he!! because I forgot to put emla cream on, but I shall remember next time. Wednesday is my bone scan & then we drive down to Victoria for onco appt on Thursday morning. DH & I are staying in a fancy hotel on the water in the inner harbour, they have a special cancer rate called the "Courage" rate, a bit hokey, but if they're willing to give it, I will take it. There has to be some benefit to all this!!
A bit scared to go online & check out my TM's, but I guess I'd better run & do that. Wish me luck! Dee
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Dune, A good solution for those of us (one that is used by hospice)for pain control is to obtain "patch"medication prescription. For predictable medication delivery some docs suggest this. As an added benefit it is a deterrent to the "street seekeers" who prefer oral or injectables. I hope that our MOs can help with this.
Wishing "best results" to all those who are the CT and etc folks this week. Peg
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Hope everyone is doing well. Just reporting in, after 4 1/2 days on X, I'm still here! Nausea is building, and I suspect the big D might be being. Rumbling tummy and looser today. Sorry, TMI. I have Zofran, but haven't wanted to take it since I take pain meds that already give me probs with slow intestines. What is everyone else doing about nausea? So far, I've been eating every time I feel a wave. But, if I keep that up, I'll be a whale in the wave
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Romansma - glad to see you post. The whole pain pills constipation and then the nausea and big d ride sucks ! Don't you live in a state where mj is legal ? Have you tried that ? Seems like we talked about it before but don't remember what you said. My state is unfortunately will probably be one of the last to allow it. My county doesn't even allow liquor sales. Anyway hope you feel better. You Can do this!
So yesterday I was admitted to hospital for sepsis in my blood. Er dr said organs were beginning to shut down. I am feeling a lot better. Ready to go home. Dr laughed at that. Hoping and praying I get home soon. My ds's have been they enough they need me alive and home for Christmas. Friday is their last school day and it looks like I'll miss yet another party at school for them. Thankfully dh is wonderful!!! He will go to the parties. Not sure how dh is handling the load put on him over the last year and half. But praise God for him. He is awesome.
Sorry can't really remember what every one else has going on but I hope everyone is sleeping pain free at home with people who love us.
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Romansma, how about ginger tea? If that doesn't work, your onc should be able to prescribe something stronger.
PattyP, I'm sorry to hear about the sepsis. I'm glad you are feeling better, and you are getting the attention you need. Hope you can be home to spend Christmas with your family.
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Shoot Patty, you can't get a break! So, here's the plan. Pretend you are at a spa being pampered. Order up some magazines and lavendar hand cream and just relax! Feel better soon!
Woke up very nauseated! Yes, MJ is legal and it helps. It just wipes me out. I just sleep all the time. Not awful, but my brain still wants to do all these things! I did think of the ginger tea too, but then forgot about it yesterday. Took my son and his buddies to a pre-screening of The Hobbit last night and was too tired to do anything when I got home last night. Ok, today, I will try some of these remedies to see if I feel better.
Freebirds, it's a small world! Love it here. Hope you are feeling better
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OMG Patty - hope you're home now and taking it easy. That was quite sudden?Romansma - hope you find the right remedies to get rid of those SEs.
Dune - did you manage to get your pain meds?
I started jaw pain about 1 week ago off and on. Seeing the dentist tomorrow and hoping it's not ONJ.
Wishing you all ladies a good, pain free and SE free day.
Linda
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Hope it's not, too, Linda
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WoW, Patty! I'm so glad they caught the sepsis when they did! So what happened between your doc appt and getting the heavy duty antibotics that sent you to the ER? Whatever it was, thank goodness you are where you are and getting the care you need! Very scary!
Romansma, I'm so sorry about the tummy issues. Hopefully some ginger tea will help. If you have or can pick up a jar of the grated ginger, you can make really good tea with it -- stronger than tea bags and less hassle than grating it yourself.
Great idea about the pain patch, Momonana. Dune, did you get your pain med? Hope so!
Linda, I sure hope your jaw pain isn't ONJ. Are you on a bisphosphonate or Xgeva? I'm under the impression from what my dentist recently told me that even if you have the early start of ONJ, getting off the med will reverse it as long as you catch it early. Hopefully, he's right, but more hopefully, it's not what's going on with you anyway.
Prayers for comfort and only good updates from you all! Deanna
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hi
i did have bone mets to the spine. my mo arranged to get mw quickly to radiation. by the third radiation appointment I was pain free. I have bone mets in other places as well and pain comes and goes. I am starting zometta today. Good luck to you
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Linda - hope your dentist appt goes well and it's not onj
Romansma - did your son like the screening of the hobbit ? How are you feeling this afternoon ? Loved Deanna's make your own ginger tea idea. Hope something works for you.
Thanks for the well wishes all. So yesterday am I woke up at 2am with vomiting and the big d. Never vomited like that before was nonstop literally. Could hardly catch a breath inbetween. Than my chest started hurting terribly, can't catch my breath and my left arm went numb. So my dh rushede to the hospital. I really thought I was going to die on the way. Very scary indeed. Er dr first said it was from dehydration. Then after test said was sepsis and organs were beginning to fail. Wow that happened so quick. Anyway feeling much much better today.
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Deanna - yes on bisphosphonates (Aredia) every 4 weeks since Dec. 2013Linda
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Deanna - forgot to ask you. How did your blood work go yesterday - take 2?Linda
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Oh, (((Patty))). How scary!!! I'm so glad you went to the ER, but how horrible for you and your DH and sons to go through that! They must have been terrified.
3-16-2011, so glad the rads worked so quickly for you! And glad you've found us and joined the conversation!
Linda, take 2 was surprisingly quick and easy. The lab supervisor who did it was a real pro, and I was very grateful. I'm also very aware that it was really nothing compared to the other issues here, but since having the problem much worse in the past (especially with IVs), I tend to freak out when it happens.
On the ONJ... Does anyone know how they even dx that? Hoping this is just a theoretical question, Linda, and all will be fine with you, but I am wondering if they can tell from an x-ray or ????
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patty,
What an ordeal! Glad you are on the mend.
Deanna,
I have no personal experience with ONJ, but I understand that it really, really hurts and that's the tip off. In some cases, the jaw bone comes through the gum. It is not a subtle disease!
Caryn
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Deanna, yes, it can be diagnosed through an x-ray in its earlier stages. If the x-ray shows dead bone, a culture follows checking for a certain bacteria (sorry, can't remember its name), which when positive, will be followed by a scan with tracer dye to view blood flow to the area. If it's already progressed, those tests are unnecessary as bone will already have made its way through the gums. ONJ is the only cause for this, confirmed with an x-ray. This info is based on my discussions with my dentist and experience. Others may differ.
Forgot to mention, Listerine helps kill that bacteria that I can't remember the name of. The goldy-brown version only. None of the other Listerines have an effect.
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Deanna - glad take 2 went smoothly
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Ladies, I just saw on FB that Hindsfeet is in an emergecy situation and needs to have her port removed STAT. I'm sure she won't mind me sharing this here, specifically to ask for prayers and positive thoughts for her this afternoon as she gets to the ER and into surgery to correct what sounds like a pretty serious problem.
Praying for you, Hindsfeet!
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Thinking of you Patti!! Such a scary situation! Wishing you strong healing!!
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Deanna,
Thanks for letting us know about hindsfeet. She seems to have adverse reactions to so many tx and tx related issues. I had a complete pneumothorax two weeks after my port was installed and was rushed to ER, so I can completely sympathize with her.I will certainly keep her in my thoughts.
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Hi everyone, first of all wishes of hope and better news for all here. It's sad to see the monster just get to so many, and so many in the prime of their lives. I posted my question somewhere and i can't find it. I came across this section, and u guys seem to have a lot of experience, so here it goes.
My daughter is 31yrs old, mets to almost everywhere in her bones, when the Pet-Ct results came back, what worries me a lot is also mets in the skull, before she has been on one or other Hormonal treatment for 3 yrs, this time, the onc put her on Halaven, Xgeva and after 3 wks, and shes is not feelg any relief, so they decided that it's time to do a bone biopsy and some BT in the molecule level, to find out really what kind of C it is. Maybe it's not regular mets? I'm not sure, did any one here ever hear of this? What now? Any input, would be greatly appreciated. Thx
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Hi mom,
I am so sorry to hear about your daughter. Are you saying that they are not sure her mets are from breast cancer? Or are they checking to see if the mets have a different hormonal profile than her original bc? Not sure what you're asking when you ask if these are not "regular mets". Can you clarify that question? Mets to the skull do sound scary, but remember that the skull is a bony structure and having mets there is not the same as brain mets. Still, understandably scary. Take care.
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Sending positive and healing thoughts to you Hindsfet
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Hi exbrnxgrl, yes to your questions. I think they are not sure, because they thought it would have helped somewhat, and bcs it was soo extensive i think they r freaked out, to b perfectly honest. She's been w the same onc since this whole mess started and the onc is very invested in it, which is a good thing, but i also don't feel comfortable in checking with others bcs i know she really cares. The biopsy is either gonna be done thursd or mond, they have to call her. She had BT done, and is being sent someplace, i'll try to find out. My daughter tells me bt the issues, but she can't stand talkg details, she doesnt wanna b reminded bt it all day, she has 2 young girls, and we all just make blieve. She is very good w appointments, meds, but she wishes to swoosh(is that a word?) it all..., so if i have to call the onc sometimes (she says i could call or get info anytime, she just doesn't wanna know bt all bits), i do, but i try to leave it really when i need to. Did you ever hear of what they could find in the biopsies? Thx for replying, and how have you been doing?
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mom, As exbrnxgrl states they are probably doing a biopsy to determine the pathology (I think that is what it is referred to as) of the bone mets. This way they will be able to determine if the treatment your daughter is on is the proper one or not. Not easily done but try to relax until the biopsy results are in.
We all have our ways of dealing with our diagnosis and it sounds like your daughter's approach is to let the doctors do their job, while your daughter can concentrate on her daughters.
Best wishes to you.
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Hey, MusicLover, yes, that's the word i was looking for, pathology. Right, they started for now abraxane, to change from the other one, at least till the biopsy. Yes, my daughter is tryg to concentrate on the little ones, they are a true blessing, bcs otherwise i don't even know. The only thing is, I know she knows or thinks she could rely on me to be watching her back, i've gotten her all the doctors, the radiologist, she had a oncogyno(hysterectomy), and so i feel very responsible and scared i should not miss a/t. Simple. I truly praise the Lord when i could sleep for a few hrs, bcs sleep is scary. That's the truth. She is a fighter for sure, so i'll wait a few days, see what magic comes thru. Thx for being there, it's very sweet of you.
I've written in the past on these boards, but somehow i get lost when i get back in, if i close it, how do i get back here, if nice people like yourself write something i should see?
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Momallthetime,
The biopsies are essentially looking for two things. The first being a confirmation that what has been found is a breast cancer metastasis and the second the hormone profile. This can sometimes change from the original cancer.
If you want to "mark" a particular thread so that it's easy to find, click on "add to my favorite topics" which I believe appears near the top and the bottom of the thread.
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