Bone Mets Thread
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LindaE, Did you begin you rads today? How are you feeling?
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Thanks Z and Linda! Yes, my Dad used to tell her all the time to look at him just so he could see her eyes. They are kind of startling! She didn't get that from me lol! I have plain old brown eyes with almost no eyelashes!
Linda, maybe yours won't completely come out...I knew a woman whose hair thinned but she never lost it all.
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Gracie, how special that you could be there for your daughter's pageant! She's absolutely stunning! And kudos to her for competing!
Oh, Dee, that vertigo episode sounds incredibly scary and just like one I had the night after I'd had the IV antibiotic (Invanz), and then took a dose before bed of the oral antibiotic Levofloxacin. Like you, I woke up during the night, sat up, and the room literally did a fast 180 on me. It was the scariest thing ever. I was absolutely convinced it was brain mets and I was terrified. Just sharing this because my heart goes out to you, knowing how scary that can be, and because we all need to be aware that our meds can do this! And I'm going to look up the epley maneuver next. Thank you for the tip! And you are such a trooper to do a trial in view of where you live! Praying scan results will be good beyond your wildest expectations!
Daughter, so glad to hear how well your Mom is doing. Hopefully, some sunshine and BRCA group support will be give her a boost of energy. And prayers for negative biopsy results!
Lita, I'm curious... Do you wear gloves to shield your hands from the sun, or for hygienic reasons or ??? I re-started X today (after 2-1/2 weeks off) and I swear after just one dose the sun damage on my hands is a lot more prominent! It's crazy how it affects it. I just don't get it.
Z, you mentioned probiotics. Is there one you or anyone else here recommends? I've never noticed a difference with the few I've tried in the past, so pretty much stick to natural probiotics, like yogurt and sauerkraut. But I'm open to recommendations.
IntoLight, what a sweetheart your granddaughter is! Like some others here, I daydream about that chapter, but my 35 year old son and his girlfriend, who is like a DIL, just don't seem to be in any hurry. Sigh...
Lynne, wishing you many more milestones -- 5 years, 10 years... until the day mbc can truly be considered a chronic condition that we can all continue to live with for many years.
I'm sure I've missed things I meant to acknowledge, but will wrap this up for now by sending a big hug and caring thoughts to all! Deanna
PS ~ Lita, thank you for reminding me about adding cucumber, mint, etc. to water! For some reason, water tastes weird to me when I'm on Xeloda. I've been drinking mostly mineral water, but I did buy a few things today specifically to add to water to try to make it more appealing. (This has never been a problem for me in the past. I usually love and drink tons of water. Just a strange SE of X!)
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Deanna, thanks so much! It was great spending time with her...she only gets home about once a year and I try to get up there at least once.
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Deanna, I wear the cotton gloves because my hands tingle and burn from HFS, and it hurts to grip certain things, even the steering wheel. I also wear them for hygiene reasons. You wouldn't believe how filthy they get after just a couple of days. Lastly, to ward off the sun.
If I could get away with putting a paper bag over my head, I'd probably do that too. A wide brim hat only helps so much when it comes to keeping new freckles at bay. You also have to worry about REFLECTION bouncing up from the sidewalk, etc.
Your welcome regarding water tips. Yes, I've noticed a change of taste in certain foods and beverages, too. Sometimes tea tastes weird. It didn't start for me until I'd gone thru several cycles tho. I just started cycle 16. 😃
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Gracie,
Your daughter is lovely! Daughters are such a wonder...Every visit is precious and it was worth the trip!
Met my new Onc in Colorado Springsat UC Health today and Had a good first impression. I'll send you more info Z, as I learn more. I'm here till November 4 so you have a place to stay if you decide to make the trip.
Has anyone heard from Chelle recently? Haven't seen her on the board and hope she is doing well!
Hugs all around! Love hearing about good scans and stability!!
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Thanks lwrite! Very interested in how you feel about your Onc over time. I meet with my onc tomorrow and it will be disappointing. I have to keep my eye on the prize ... I have very specific tests I want to get and need to convince her to order so that insurance covers. She will be clueless. Oy. I learn more here than I do from her.
Deanna - fermented foods is great. What you want going on in your gut is a variety of good bacteria so a variety of fermented food will do the trick. Cancer patients want to be sure to get Bifido bacterium, in addition to all the other stuff. There is Bulgarian yogurt starter that uses these strains and I expect that is right up your alley. So tasty. I do take a probiotic supplement with bifido strains as well as the usual suspects ... lacto bacteria. That product delivers 100billion colonies. You also want to make sure you are getting the fiber and knarly veggies that the bacterial like to live on ...
If you get into it you can research pre-biotics and then eating becomes like feeding these pets living in your gut. Hmm.
How are you feeling?
>KNC<
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Lynne - thanks for checking on me, you're such a peach. Rads went very well, no way can I be the flying nun with that mask bolted on the table lol! Remember that show? No headache or nausea so far - taking Dex and Zofran as prescribed.
Deanna - good to hear from you. Water has a metallic taste with well almost everything. I alternate water between flat or bubbled, lemon and lime. Have to try cucumber.
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LindaE, I remember the Flying Nun very well. How could I ever forget that headpiece! I am glad that your first round of rads went well. Four more rounds, right? I hope you are in that small minority who see improvement with the treatment, but of course preventing further neurological damage is even more important. I will be thinking of you all week and I am lifting you up in prayer. I hope your SEs continue to be non-existent or minimal. (((Hugs)))
Lynne
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Hi all, just left my MO's office, CT & MRI all good, stable/healing. Lumpectomy is a go for 6/27. I'm only 6 months out from diagnosis but hopefully progression stays away as long as possible. I am a realist though, I know they are not all good days.
I hope you all are doing well.
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Ahhh the head and chest mask. Remember being bolted down to the table well. At one of my rad sessions they played music for me. The first song was Que Sera Sera by Doris Day!!! Too funny.
lllimae, Great news on being stable.
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Lindalou, Seriously? Que Sera Sera? I don't know if I would have laughed or cried. I probably would have laughed uncontrollably, and everyone would have thought I had lost my mind.
Illimae, Congratulations on the CT and MRI results. Stable and healing are good words to hear for bone mets. WOOHOO! Soon your lumpectomy will be behind you, and you can begin to enjoy the summer. It sounds like you are doing well after just 6 months. I hope your good days far outweigh your bad ones, and you continue to see good results for many, many years.
Lynne
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illimae - so very happy for you!
Lynne - second was done this morning, 3 more to go! Still feeling good.
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Lllimae,
Glad to see you got some good news on your recent results! Hurray I am happy for you!
Ronnie
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Great news, lillimae!
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illemae, that's great news!!! Woohoo! I had my Ct done today, my bone scan last week and I see the doctor on Friday. I'm hoping for good news like you got! I am 10 months out from diagnosis!
Linda, so glad you're doing OK with your rads! I know there are some people who don't have the bad se's . Hopefully you're one of those!
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Linda I would say half way through the second cycle handfuls came out and I just shaved it. Totally bald now but I still have my eyebrows and lashes thank goodness. Though I did hear they could still come out.
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Gracie~ sending gentle hugs and prayers for good results Friday! Hope your arm is feeling better, have you gotten your pump yet? ~M~
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M, yes the pump arrived!!! Yea!!! Have a call into the company, hoping she'll call me tomorrow. Thanks for your prayers and hugs for Friday! It seems I get more and more nervous with every appointment it feels like I'm just sitting and waiting for the next shoe to drop I know you know exactly what I'm talking about !!!
Hoping you are feeling a little better!
Hugs back atcha!
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Illiemae - you are rockin the dianostics. Great scan. Time to enjoy the summer.
Gracie - I do no what you are talking about. For me drains me whether the news is good or bad. Take care of yourself this week. That pump is the place to start. Let us know how it goes.
>Z<
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hi everyone...wendy congrats on the great scans!!!..i know it was a few pages back but were you going to go on a parp inhibitor also....my scans all showed progression so my doc is starting me back on iv chemo this friday.(i have had a great run off chemo since Nov 2015)..it will be Halaven and he also wants me on a parp inhibitor called Lynparza....the problem is the fda has only approved this parp inhibitor for ovarian cancer and i cant get in the trials because of my brain cancer...they are doing all they can to get me funded....so...does any one have any info at all on this combo?...should i fight harder for this parp inhibitor?...my doc said he wanted it for me back in 2015 but it would never happen for first line tx i guess....any and all input is most welcome...im feeling lost and like my tx "up in the air " right now...thanks in advance for expanding my knowledge , it means the world to me right now....
btw...lita i thought of you in my garden yesterday when my roses (Lucille Ball, Mr Lincoln,Peace and Tropicana) broke out in a riot of color and fragrance, my garden has almost caught up to Cali and it makes me so happy to be out here....keep shining bright
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Nan - I think the reason why your doctor is interested in this PARP inhibitors is that they just presented the results of the olympiad trial at ASCO, possibly last week. It is a Phase III trial of 300 HER2- breast cancer patients. Patients taking Lynparza had a significant 42% reduced risk of progression, with seven months of progression-free survival compared with 4.2 months for patients treated with chemotherapy. Pretty awesome result on patients who had already completed two rounds of chemotherapy PLUS all the hormone therapy options, if they were ER+. I am going to go post this separately because this is good news.
I think you can reasonably argue for insurance coverage based on the results of that trial alone, or you can approach Astrazenica for compassionate use until it gets approved, or you can do something else until it is approved. You will certainly be eligible at some point.
If your oncologist is really out of options, other than lynparza, find another onc or retain a doctor who just consults on treatment options. I agree, after reading that trial result, that it could be a good choice now, but certainly not the only choice, especially when you look at trials.
I don't know where you are, but I like the Tumor Infiltrating Lymphocyte Trial which I am pretty sure takes people with Bone Mets. You contact the NIH contacts listed on that link directly, today, to start getting evaluated for immunotherapy trials at the NIH. You are looking at 1-2 months away from home, mostly in a hospital, and a few trips with that trial.
I also like trials of chemo that has been bound with antigens specific for your cancer, like IMMU-132 or DS 8201A. These are easy trials relative to the NIH immunotherapy trials and they are getting great results. There a quite a few smart informed people on these forums that will have other ideas. There is no reason to worry about running out of options, however the number of treatment options is a bit overwhelming. There are services that will help you vet trials for you, although this forum is not a bad place to start.
Hang in there.
>Z<
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Thanks Z! Yes I know all of us get that feeling! It kind of sucks! How did your appointment go? Was hoping it would go well for you. Will let y'all know what I find out on Friday
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Gracie, Good luck with your scans on Friday. I hope you will have good news to share with us.
LindaE, I hope you still feel good after today's rads. Three down, two to go!
Lynne
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I have been wondering about Celle also. Has anyone heard from her lately?
Hugs and prayers
C
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hi Z.... thanks for all the info...your're the best!!!...i really have a lot of faith in my team and my doc always tells me he doesn't worry bout me...not sure why but im gonna ask next time lol....so he tells me that he has 8 more combos he likes for me before we have to start looking for trials, so i guess thats good....i think there are quite a few parp inhibitors out there....im still going to try to stay strong in the education dept so thanks so much for all the help with that...thanks to everyone for sharing so freely and openly....just reading here has calmed me , motivated me, educated me, entertained me, and most of all made me feel like im not walking this road all by myself...it is such a lonely road even with great support no one but one of us really knows all these highs and lows and how deeply every thing is felt now.....thanks for shining so bright!!
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Yep Lynne, still feeling good!
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Bigbhome
Chelle had a bit of a scare and was admitted to the hospital with severe nausea. She is good now though back home and doing better. I'm sure she will be along with a comment I'll let her know you asked
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Thanks Wendy! I have been really worried . Tell her she is in my thoughts and prayers.
C
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Hello to all!!! I have been feeling very sick lately. Lots of vomiting and d. I was in the hospital for a few days to determine the cause. After an MRI of the brain, I was told that no mets were found!!!!! It is only viral. I have never felt quite so awful before. Cancer makes these viruses go crazy!!! I am on the mend now and feeling better everyday. Still very tired and weak. It may take me some time to bounce back,but I most certainly WILL BOUNCE BACK!!!!! Big b and I write- thank you so much for inquiring. I will be better soon and will be in touch!!!! ❤️Love and hugs to everyone!!❤️
Hubby is healing slowly. The surgeries will begin this month!!!
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