Bone Mets Thread
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ldun, I am new to this and mine is bone mets also. I was diagnosed mets right after my treatment for initial diagnosis was finished. I am on xgeva myself but only 1 month so I have no advice to give you but I want you to know I will be thinking of you and will pray your surgery is easy. I hope someone here can help with your situation. ((hugs))
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Babs, congratulations
A wedding sounds wonderful!!!Idun, I'm so sorry you are dealing with everything. I've only had two shots of xgeva for my bones, and still only in my bones, so I have not had your experience with all of this, but I'm terribly sorry for what you are dealing with.
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Gracie - Wonderful news about the scans and your daughter!! You were due for some good news :-)
Babs - So happy to hear about your daughter's engagement and upcoming wedding!!! It will be such a magical time to have everyone together and see her happy and settled!
Cita - Thinking of you as you've received progression news...there are good options for you and I'm hoping you can get to NEAD very soon.
Idun - Some others on this thread have had to deal with ONJ and been able to address it successfully. Keeping you in my thoughts as you prepare.
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Wendy,
I have read a lot about cannabus oil but have not pursued it. I am currently receiving Herceptin, Perjeta every 3 weeks and Zometa every 4 weeks. I have questions regarding caanabus.....how do you know what ratio to start with? Does someone help you with that or do you just guess?? I still work and am not sure how that would go but am thinkingif I take it at night only it might be ok?? I just want do whatever I can to live a LONG time!!
Coming from a 41 year old mother of a 13, 12 and 8 year old and wife of 17 years:)
Best wishes,
Kathy
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Kthielen...there is a cannabis thread on this website. Go there for dosing info. Usually about 10 mgs at night of a tincture does it for me. I only vape when I have break out pain or severe nausea. Good luck.
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Baby therapy, with a darling 7-month old.
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Patti - What a great pic of both of you! He/she is absolutely stunning! Best therapy! It brought a big smile on my face this morning.
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Hi Cathy
The cannabus dosing and type is a big question out there right now. Z had said on previous posts that there are now MJ doctors that one can ask on line for a small fee. As for me it's been a huge learning curve and it's not stopping. I starting with RSO which is very high in THC don't remember a lot of that time. After doing this for six months I had progression . Then I started reading a lot on CBD so I started a regime of high CBD lower THC and this seems to be helping. I take about 200 mg per day and do the THC at night to sleep. It's not all I do but I think a big part . Good. Luck
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Patti,
Baby therapy is the best! So glad for you happy times:)
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babs, you deserve every joy!!!
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Idun, sending healing thoughts, holding you in the light. Love and hugs, MJH
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Such a cute picture with you and baby, Patti!
idun, I have no direct experience with onj, but I was sent to an onj specialist at UCLA School of Dentistry prior to starting Xgeva. If you have any concerns about the appropriateness of the jaw surgery being recommended to you, I would be happy to give you her contact information for a second opinion. I don't know where you're located, but since onj is her area of specialization, she would probably be interested in knowing about your case, and may either consult by phone or be able to recommend someone of her caliber wherever you are, if needed. Unfortunately, since onj is rare, even many well-qualified oral or maxillofacial surgeons may not have seen that much of it. I'm so sorry about the progression, but hopefully your next line of tx will take care of that quickly.
Here's to a good week for everyone! Deanna
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Patti - OMG, so cute.
Kathy - What you do with cannabis depends on your goals and your diagnosis. Are you trying to sleep, manage pain, manage anxiety or cure your cancer? The sleep dose I take is 10mg of a 3:1 CBD to THC mix, the cure doses are much higher and depend on the specific cancer. They are also expensive (long term, not covered by insurance) and very tricky to tolerate. I don't recommend dabbling in Cannabis or any complementary approach based on Dr. Google.
I am completely convinced that cannabis is one effective complementary treatment. There are several people doing very well on it. However, Cannabis is one tool in the very large toolshed of complementary treatments. My complementary treatment is extensive and doctor supervised. Neither of my specialists have put me on cannabis yet.
The real question is whether you are going to invest in complementary and alternative approaches in general. They are expensive. You need a long term relationship with a practitioner you trust and this can take a while to find and develop. If the $ and relationships are in place, the next question is whether Cannabis is the first thing you try.
I do believe that the treatments that interest you, or seem to make sense, are the ones to go for. That is basically your intuition at work. But if you are trying to kill your cancer, you need a specialist in Cannabis and cancer. Most importantly, cannabis, should you choose to use it, is always a piece of a treatment strategy not the whole thing.
There are a number of doctors doing online consultations. Aunt Zelda has a doctor who focuses only on cannabis treatment, Dr. Lawanda appears to use cannabis as part of a larger complementary strategy. I follow them both but they are not directing my care.
>Z<
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Kathy, since MM has been legal in CA, I've stayed open to using it in the future, but like Z, haven't yet added it to my regimen, which also includes both conventional and complementary stuff. Here's what I thought was a pretty good article about MM that talks about known stats and dosages.
http://www.curetoday.com/publications/cure/2015/su...
Editing to add a chart my son had found for me that shows what might be best suited for various concerns: http://sclabs.com/ailment-guide/
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Deanna - filing that info, thank you.
Mara Gordon is "Aunt Zelda". Here is her youtube talk on treating cancer with cannabis dialed in to the section on Breast Cancer Dosing.
>Z<
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Thanks all for the congratulations!!!!
Patti-loved the picture of you and the baby-there's nothing better than baby therapy.
Babs
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You guys are such incredible Human beings.
Babs again congrats for the great news! Can't wait for those pictures. So much to do ain't got no time for the other nonsense.
Zar you are quite a lady. What you wrote to Patty tore at my heart, what a true friend. If she is uncomfortable with pain her mind will be difficult to focus on something else. Zar interesting what you commented on PR- I am thinking Dani's biopsies, bone and Guardant showed ER+PR- HER2+ but her response to tx is so minimal, could it possibly be a maybe TNG? ER is very strong like 95 HER2 FISH3 so how would that make sense? Just grasping for straws.
She told me she would accompany them skiing, but prob will sit out "like a dummy" her words, at the cabin watching them go. She might do light stuff. Yeah, as Lita mentioned, always when you are having fun, she had to cancel so many fun things to do with the kids, truly ridiculous.
Kathryn re: the idea of you writing a book with all the idiotic things medical professionals say oh, that would be a funny book. I think it's fabulous. The book I recommended was: A series of catastrophes and miracles by Mary Elizabeth Williams.
Letmywifelive so so sorry. It's a tough one, but I am sure they will come up something else from the arsenal. It was devastating to hear the news that it spread to the liver. I know how you feel, I must say it took days to get out of this funk. It's so interesting what you mentioned re: treatment for the bones and liver. I see that some, very few, but some lesions in the bones got less avid that's how they write on the report, but in the liver it's the whole liver, and it didn't really change, although the AST/ALT are lower? First how could that make sense? Also, she is on Xeloda/Herceptin/Ixempra – so many benefited from the Xeloda for liver mets, unless we just need to wait and give it more time. Which we are anyway.
Jen, thanks for sharing the beautiful picture, you go girl, that's what's all about, you and Luke. It's so wonderful you are doing all these things, the gifts the letters. Good for you.
So happy for you about the good scans reports. It's just comical exactly what you are saying, as in the multiple rib fractures the same as last scan, excuse me, no one told us about fractures ribs they saw a few weeks b4, and shouldn't ribs be healing already after 2 mos? Isn't it weird? And many more like this.
Rachel I bookmarked the post, thanks for sharing, they seem to be real nice. Love love your pictures! They really know how to behave for the pictures.
Amy I saw the pictures, it's just stunning. Everyone was radiant. What a gorgeous dress you were wearing.
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Z you got me all over the place! I was crying, laughing, worrying reading your post. Yep, this monster came right along in the new year. I still think it's great that you had the reality talk with the kids. I do understand the others. In my daughter's case, her kids are quite innocent, and I do think they know something is not right, they don't know what, but I feel they know, like family pets. I wish she would tell them. Zar would an MRI of the breast maybe show something that you can't see on the Pet/CT
Misty so sorry you are going through this. My daughter is in her early 30's and little ones, it's devastating, but she goes to PTA! Your thoughts are very real. We think about these things too. It will get easier with time, first you have to get a grasp of what's going on, you've got enough time to worry. And then, you could do things like Jen is doing. Which phase is the trial you will be on?\
Lynne happy for you. I totally get that you would want less tumor stuff going on, but we keep telling to each other that stable is good. We can only for the best.
Lita she is just adorable. She is lucky to have you. Lita that picture with DD awww just awesome. It's a feel good moment.Lita I just read about your cousin. I can't imagine what to say. Is there any hope to find who the vermin is? Oh, what your family must be going through! Just a big hug to you.
Dee I really wonder what's with all these people…she probably did not even have to worry about a cavity in her life, that's what I think. That is a lot of snow in your picture, but it sure looks pretty. So so glad for you that things are holding up. Enjoy!
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Kaption you are lucky they got to work on it asap. Hope this will make you feel better really soon. Would your husband consider some anti depressants? The dosage could be adjusted to what his needs may be.Just to give him a kick to go through the day. Also, for me I found sleep is very important. I take something or somethings. I cannot even wake up for a min during the nt, my mind starts wondering. A little good music, some comedy I find works a little.
Deanna hope you are doing better with your ache and pain. THx for the input.
LindaE thanks for sharing your fractures
and the funny thing is how they casually just say yeah like a few weeeks ago, hmm I did not hear about it a few wks ago, and should it not have gotten better after like 3 mos?? Love that you had the time with close family, good for you.Casun, we were told that MRI was the best modality for the brain. My daughter has had mets to the skull for about 3 yrs. Last year, she had issues with vision, so she had Gammaknife (type of specific radiation), of course they try to not radiate anywhere much less the skull area, unless totally necessary. She has more than 30 tumors. They only radiate the trouble zones, and once it actually is by the brain function, which eventually it got to. You could ask they should scan this often, every place is different, in her case it's now done very often 8/10 weeks, but I guess for you would be more like 3 mos or more, until they see a real trend of more
Casun so sorry you have to deal with it and being a mom to such a little one.
Milaandra affair it is!
NicNak I saw you on the brain thread. Happy that you got through the rads, and your body shows nead.
Chelle wow you are busy. Jax is adorable. What color is the granite? That's exciting. Does your daughter live nearby?
Christine sorry you have to be here. So many newcomers, just crazy. You will feel very comfortable here, everyone will try to help you along.
Oh Gracie sweetie, you bet. Hugs and hugs. What's with these people?? One thing i think it's important what Lita mentioned, that your affairs should be in order, it's not a matter of urgency, more for you to be at peace, who will take care of what or get what in paper.
Wendy with your beautiful smile, you went through so much. Glad you are feeling well.
Mary keep the faith! Hope you could feel better soon.
AnnieOakley thanks for checking up.
I for sure am not mentioning someone, so sorry, I had to read up so I could get where everybody is at, now I have to go to the other threads too.
Thank you for all your advice, easy peasy for sure. Not.
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Patty you are going through such a hard time….everyone here understands what you are going through, pain is a showstopper that's for sure. But maybe if you could possible regain your strength and make sure that there are no other alternatives......Hugs and Hugs
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Patti thank you for sharing such intimate moments. It's a corridor that is full of mysteries. Wish you peace.
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Mom - You are amazing and your daughter is a chip of the old block. What I have read is that the estrogen receptor can require a functioning progesterone receptor to work. If that is true in my case, then I am effectively TNBC. That is scary, but it does open the possibility that some of the new treatments for TNBC, which are very cool, will help me. At the moment, I am responding to Letrozole and Ibrance. At least one doctor thinks it is the Ibrance doing the heavy lifting. CDK4 inhibition may work really well against TNBC. In any case, December scans were stable, so I have been pushing the complementary therapies, getting exercise and hoping that something is still working.
>Z<
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momallthetime you are amazing
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I'm with Wendy...AMAZING!!! I love you dearly respect you immensely. You are really something.
My prayers are always with you and Dani!!
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thanks momallthetime for the thoughtful responses to everyone! I hope everything is going well for you and your daughter.
I had my first PET/Ct scan today...so far I have only had CT and MRI's. Now I am trying to stay busy and not think about the results. DH and I are going to take our 2 year daughter to the snow this weekend. Hopefully that should be enough distraction
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Hang in there Casun, waiting is terrible. Good job distracting yourself. Be prepared for the PET scan to find things you the CT did not find. It's not necessarily progression. PET scans are both more sensitive and more prone to error.
>Z<
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thanks Z I will keep that in mind! I will be back with updates when I have the results.
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Casun: I'm having my first PET scan on Monday, Feb. 13. No alcohol for 2 days, no carbs, only proteins day b4 and fast for at least 6 hrs prior. Is that what you had to do?
The nurse did say I could also have cauliflower, broccoli, onions, mushrooms, and green beans....no fruit, fruit juice, or even gum!
L
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Lita - yes I had to follow a low carb high protein diet for the entire day before, which included NO coffee! And no gum, mints, etc. I was lost without my morning coffee. Also, if possible skip the over the counter meds/supplements that contain sugar the day before. no strenuous activities 24hours before test and fast 6hrs before test.
They gave me a list of foods to eat / stay away from Which was helpful but miserable all at the same time.
Good luck on your scan. It will be here before you know it.
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Idun, I'm the other one waiting for surgery for MRONJ. Since I haven't had my surgery yet, I'm in the same boat...everything I know is from online research and that isn't much because even the doctors don't really know.
But...have you had a cone CT scan of the area? Is there a sequestrum? Is the jaw in danger of breaking or is there a danger of a fistula? Do you get constant infection and do they have you on antibiotics?
I wouldn't let them touch me surgically unless they could give me a darned good argument as to why it's necessary and they have cone CT scan results in hand. Most medical professionals go with a conservative approach. Long, long term antibiotics (which is where my health care dropped the ball, leading to a big-time worsening of the problem), the use of antibacterial mouthwash (usually chlorhexadine)...there has been some experimentation with ozone, hyperbolic chambers, etc. At most, if the bone is too rough for the gum to heal over it, they will debride the area.
However, additional trauma can create further problems, and surgery is additional trauma. And sometimes it just spontaneously heals, and they don't know why.
In my case, I had almost two years of infection that was treated with five days or a week of antibiotics only when it made my cheek puffy enough to prove I had an infection. This went on so long because I had to go through specialists and was misdiagnosed several times. About six months or so back, they decided I had an infected molar, and cleared me to have a root canal, which the dentist did over several appointments. Whether it happened during those four or five appointments or whether it happened from prolonged untreated infection, I ended up with a sequestrum...a big chunk of the diseased bone has separated from the rest of the jaw, and they say it's being held up with one tooth root and some soft tissue. There may be a sinus fistula (mine is in the upper jaw). Once a chunk has separated, it never heals...not in an open environment, and because of normal bacterial, the mouth is considered an open environment. So...that's why they recommended surgery. Take out the loose bit, take out two molars (one will show when I smile), fix the sinus fistula if there is one (by removing a pad of flesh from the inside of my cheek, and using it to stopper the hole) and sew up the gum over the newly exposed areas. The surgeon candidly told me "hopefully we won't make it worse". He also told me that if it just caused problems with infection a couple of times a year, they wouldn't do surgery, it's only because mine was pretty much always infected.
I picked up that nasty cold/flu over the holidays, and was home sick when I got a call from the office asking if I could get the surgery in two days...um...no! LOL! I just called them to say I'm over the worst of it, and asked if I can get another cone CT, in the hopes of determining if there really *is* a sinus fistula...I've been on antibiotics for a couple of months now. So I'm seeing the surgeon in his office in a couple of weeks to discuss. I'm also going to tell him I don't want a feeding tube (I could stand to skip a few meals...just keep me on IV for a day or two)., and that I want oral antibiotics after...he said it was IV antibiotics and since their home-care position was empty, it would be six weeks in the hospital! I don't want that! And I don't want a picc line if I can avoid it. I don't get chemo...just hormonals.
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