Bone Mets Thread
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It's like playing whack-a-mole according to one dr at a seminar I attended last year. You treat one mutation, and then another one pops up, so you have to treat that mutation, and then another mutation of THAT one pops up. It's endless...whack-a-mole, whack-a-mole, whack-a-mole.
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LOL!! Lita, it appears your funny bone is being enhanced by WBR! Love it
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Cure-ious- thank you, very interesting. Are these mutations being looked for outside of research? As in when deciding which treatment to try in a particular patient?
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Iwrite, I've taken a combination of Boswellia and turmeric for well over a year now. My pharmacist told me it was safe to do so. If Boswellia enhances letrozole and Ibrance does that mean it makes it work better? It has helped me with pain considerably and I know it has anti-cancer benefits. I also use pure frankincense essential oil daily on the areas where my mets have been radiated. I'm also curious what he meant by it raises liver issues.
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Mary, I agree with the others. That is just WRONG! The longer I deal with all of this crap the more assertive I get. Your family wants you, and only you. Allow them to love on you, and love them back as hard as you can. Know we all love you too!
Chris
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Annie - not sure about boswellia but the furanocoumarins and, to some extent, the flavinoids in grapefruit compete with ibrance for a certain metabolic pathway and as a result, the ibrance metabolizes more slowly. The concentration of ibrance is enhanced in the blood plasma for that reason ... the body is not breaking ibrance down as fast because it is spending metabolic resources dealing with the furancoumarins.
the problem i have with avoiding grapefruit or pomegranates or boswellia (i guess) is that furanocoumarins and flavinoids are everywhere. you would have to do days of research to identify all significant sources of furanocoumarins and flavinoids and you would find you had a list good food that we should all be eating... food with proven anti-cancer effects.
i don't worry about it too much. it might be a way to reduce the side effects of these drugs, but so is dropping the dosage.
lwrite - that was a bummer of a meeting with the onc. glad you went for a hike. sorry you are dealing with that.
Z
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Has anyone has mylocytes and metamylocytes looked at on their CBC? My MO added those 2 twos tests this week and I don't really understand what I'm reading about them. It has something to do with the appearance of the nucleus of a white blood cel and may indicate how the bone marrow is doing. Anyone???
I this comb week is my week off Abraxane (except for labs) and I see MO on the 28th. Just curious.
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Gracie GREAT news. So happy for you
Kathryn. Love the picture-so relaxing
Babs
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Kathryn, Helen Hunt Falls is so beautiful. My husband and I used to hike it when we were dating. I don't know why we stopped. Enjoy your time here.
Gracie, Good news! I'm so glad you will have relief soon.
Thank you all for everything. Because of you I have my fight back.
Have a good weekend everyone. I'm grateful to all of you
Mary
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I think she meant that the liver numbers on the blood tests are becoming abnormal. It certainly could be something besides the boswellia. I meet with my original care team in Chicago next week and will see what they say.
Stll feeling comfortable doing research and adding complementary therapies if They help me feel better as that is what it's all about for me. I love the frankincense and have used it for 22 months. The hike was probably the most significant medical activity of the day
So glad to hear about good scans for our gang this week! Wishing you all a pain free and joy filled weekend
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Joy back to you, Iwrite! Hope you're enjoying the crisp, early autumn weather. At least you'll get plenty of fall foliage out there in Illinois. We get a little bit out here, but any significant coloring really doesn't start to kick in until late October/November and well on into December. That's the San Francisco Bay Area for you.
I'm going to make my DH and DD's favorite Japanese curry stew with lots of onions, carrots and potatoes. I figure I've got to EAT while I still can. Going to start Taxol in a couple of weeks to knock my 'running amok' body mets back. I haven't been on ANYTHING for a month now as I deal with the brain radiation. And if it's not too warm this evening, we'll do smores by our fire pit. It's been too warm in recent weeks to really enjoy it.
Let's seize the days we have left, ladies!
L
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Mmmm s'mores!!!! Sounds delicious!
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I am learning so much from all of you. I'm a bit overwhelmed by all you know.
Iwrite beautiful picture. I can smell that lovely fresh air. Lita, your sense of humor is great.
I watched the grands yesterday. It's my best day and was feeling good. This morning I could barely walk and it took Advil and aspirin to get me moving. But I'm moving now. MO next Friday . This will be 5th Faslodex and 2nd Xgeva. Don't know what to ask her at this point. I guess that's a good thing. I have lots of family drama and nonsense going on. Sometimes I forget I have stage4 except 3am. Wishing you all peace tonight Mai
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Zarovka, thanks for your input. I am not planning to stop the Boswellia. So many differing opinions on this. I know of a few people who were given the ok to take it. My oncologist approved it as well. I guess we have to do what we feel is right for us.
Iwrite, thanks for the explanation. So will you continue with the Frankincense?
Lita, you are a ray of sunshine! Enjoy the smores! We're having a heatwave here right now, crazy!
Gracie, great news on the MRI!
Hugs to all, Annie
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We had our first dusting of snow last night on the rooftops, but the day ended up being sunny and beautiful. For the first time in a long time, my larkspur actually lasted until the blooms were done. Usually, they get bent over and ruined by an early fall snowstorm while still in bloom.
I use frankincense, too, topically, but I don't think I ever asked my MO about it. Will see her and having scans in early October, so I'll add that to my list of questions. I'm curious what she will think.
Congrats on the MRI, Gracie! Great news.
Enjoy those s'mores, Lita. Yum!!
Hugs for everyone.
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Just finished 10 rads to my spine (T8-10). Now to deal with my femur. Radiation oncologist thought I may need rod to my femur prior to rads. I saw Ortho Oncologist on Friday. He said he would go either way surgery or none. He said that the tumor is in the marrow for the most part. What he said made sense and I am leaning towards rads with no surgery. HOWEVER, as he and the PA were leaving, they said I could not leave the room because they were getting a wheel chair and I had to go no weight baring on the leg. He sent me down to PT to get a walker. Now I pictured using the walker to help me along, balance, take pressure off, etc. No! I have to use the walker to step with the left leg than completely move my body forward using my arms to lift my whole body forward with the walker. I got the walker and am completely unable to do this. I have just finished rads on my spine and still have pain. I also have lifting restrictions. I had carpal tunnel surgery in August and have 2 healing incisions on my right hand. I have had a modified radical mastectomy, suffer from lymphedema among other ailments. Plus, I am 58 years old and have been in cancer treatment for the last 3 years and not in the best shape physically. I am going to call them on Monday to talk, but they really through me giving me this information as they were leaving. Has anyone had a rod placed in a bone? Doswn't seem that is I cannot bear any weight on the leg that it may need surgery? Confused!
Joy
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Rosiesgirl- wow- you have really been through a lot! I hope they can find a drug to start dealing with your bone mets. Somehow you need to keep your muscles strong and be active. Could PT help you ambulate better until all this is figured out?
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Joy I had a rod implanted in my right femur (thigh) it worked well for a year but then the bone uniting the femur to the hip desintegrated due to mets also. So I had to have a hip replacement and I walk with the use of a cane. My hip is fine no pain or anything but now my right knee is bothering me. I think the reason they want you to be non bearing is to avoid a fracture. If I was you I would get me fast into surgery. I've had PT to recover and it's helped tremendously. Good luck.
Aurora
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Joy - I also had a rod inserted in femur in April 2014. It was a question of days before the bone would fracture. The bone was so fragile that I was not given any choice, saw Ortho on a Tuesday and had surgery the next day! Surgery went well and all ortho material is ok 3 + years later.
Gracie - Awesome news on brain MRI!
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Hello,I wanted to share the campaign that Novartis and Eva Longoria are doing to raise awareness and research dollars for metastatic patients.
I had the incredible experience of serving as a face for the campaign and meeting with Eva to give her background on what living with MBC is like. I also attended the public launch. You all were in my heart.
Please visit the link to learn more.
https://www.multivu.com/players/English/8162931-no...
Rachel
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Rachel....THANK YOU ...... for being the face and spokesperson for # KissThis4MBC and research for metastatic breast cancer. You look great by the way!!! Hope you and your family are doing well.
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Joy good luck with your decision.
Kathryn i gotta put my head around it, that people actually live near such beautiful places. Sorry you have to this with the not knowing, well let them find out quick what's doing. I was already working on getting Dani to take Boswellia so now I'm in doubt. She did have edema of the brain post rads but it did get better after a few months. Z you think it's safe because we find so many of the same things in regular food, is that what you were saying?
Cur-ious so like damned if you do and damned if you don't kinda of a thing. And in a way it's not even so gr8 that Dani has so many mutations that they could point to, because if she takes something for one thing it might be making something else grow even more, what you wrote is what happened to her, she took the AI's did nothing for her, one by one, and even the Esr1 things. And now they are only focusing on HER2+ which I don't even think it's such a good idea.
Aurora so good to see you!
Rachel nice picture and gr8 work. How did Eva Longoria get so involved with stage IV issues?
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Hi all. I thought I'd chime in with an update of my own. I've had 3 injections of Faslodex so far. The first one was terribly painful but thanks to the fabulous advice on this thread I started taking daily Claritan and the other shots have been much more tolerable. I was only able to have 1 Xgeva so far because my calcium levels are now too low for another. AND I have a full bottle of iBrance waiting for me in my cupboard but have not been able to start yet because my radiation side effects (esophogitis, fatigue). And after 10x rads still have pain in my ribs which was supposed to go away with the radiation. I feel bad complaining because I know so many have it so much worse. But I am feeling very dejected that already the plan is not on track - only 2 months since MBC diagnosis. My next appt is 10/5 - hoping for good blood work that allows things to get back on track.
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Rachel, great picture! This campaign is really spreading the word about MBC! I have posted my picture and encourage others to do the same!
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Mom - Really I think if you want to dig into drug interactions with food and supplements you need a specialist who does nothing but these interactions... it is so complicated. But there are very few such experts. Oncs are not experts. Particularly the grapefruit thing is like swatting at mosquitos in a swamp, you get one and there are 1000 more behind it.
Had grapefruit today. Theoretically increases my effective ibrance dose. If my hair is burning tonight, I'll dial back the grapefruit. That's my approach. Go by how I feel. It's not going to do me any harm to get a higher dose unless the side effects become an issue.
>Z<
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LA894- The faslodex is helping your cancer also while you are waiting to start ) the Ibrance. My suggestion is a very slow injection for the faslodex and room temperature. I got my last two times over 1.5-2 minutes each side which is a lot of standing, but, no pain or lumps-better for the nurse as well. The one pushed time (over only 30 seconds), I got lumps and a red area- the lumps are still there from 3 months ago.
Hope your labs get better soon
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Hi All,
I'm with you Z! Going with how I feel. There is no concern with using frankincense and it smells lovely
. I'm continuing the boswellia for another week despite the CO onc comments. I don't think my liver will give out in seven days. This CO doctor also dismisses cannabis or any complementary stuff. I'll check with the Chicago team that see what they say.It is unnnerving (as others have said) to have no treatment plan updatewhen we know something new is cooking.
I spent a wonderful day today with DD2. When we were at lunch the C topic came up again. My tears started when she said that of course she and DDI would be there to help when I needed it. We had a good laugh over the fact that one of her memories of my time in Colorado will be all the times she said something nice and made me cry at restaurants.
Had to tell her that next step is probably wait and watch brain things get worse, radiation or chemo. I think she is starting to see why I'm trying to stuff all these get togetherswith her, wonderful hikes and memories in while I can. Thinking of you all as you experience these more challenging treatments...joining you soon I suspect!
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Thank you NKB! My oncologist has also emphasize that Faslodex is a good treatment - even if it's all by itself. It's good to be reminded of that. I was just so excited to be a candidate for iBrance that it's hard to wait. Thanks also for the recommendations on making Faslodex more tolerable. I will ask the nurses next month to extend the injection time. Thanks again!
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Joy- You sound a lot like me when my mets were first discovered, following a scan for a kidney stone that had formed because of the high calcium in my blood from the bone mets. A large area of my femur above the knee was really eaten up, and the concern at the beginning was that leg may need a rod. They put me in a walker and told me to keep all weight off of it, as the bone could snap at any time. When all the scans were done, they said I could just do RADS instead, which is what happened (5 sessions of double-dose rads, rather than ten single-dose because they didn't have to be careful of hitting any nearby internal organs). That was great, although about 6-8 months later it started swelling up, and I had to go through lymphema therapy. I recently took a bad fall going down the garage stairs in the dark holding airplane luggage, fell hard on concrete, fractured part of my foot, and slammed down onto the hard concrete right on that knee right above the damaged femur bone.. Am still nursing the foot a bit, but everything has held together, so I guess the femur bone healed OK following the RADs and XGEVA treatments.
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Cure-ious - I am concerned to hear about your fall, your lymphedemia and your rads ... you don't talk much about what you have been through. I am glad that you are healing so quickly from the fall.
>Z<
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