Bone Mets Thread
Comments
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piper is adorable.
Wendy. Wow you don't look like your avatar pic at all. You are ROCKING that red hair. Looks so healthy and just beautiful. You go girl. ! Look good feel good, right ?
Lindae. Damn cancer cells. Time to kill them damn things with taxol. Glad to hear you are at least giving it a try.
Hugs all
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Wendy, The wig looks great good for you! A few weeks back I was browsing at a wig store and came across a mother/daughter who helped me pick out a nice wig. There take was hey you purchase it, its yours just another tool in the makeup bag!
Lita - so happy you were able to make your daughters graduation you all look so happy!
Lulubee, Westie looks like a handful, beautiful furry friend!
Happy Friday everyone!
Ronnie
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Lindalou, I hope that nausea doesn't return with your next rounds of Ibrance. Do you have anti-nausea meds, just in case? How is your DH doing these days? I seem to recall that his lasts tests were good.
Wendy, You do look good as a red head. Four wigs? Wow, you can choose your hair for the day based on your mood, right? Maybe after a while your family will learn to WATCH OUT if you are a CERTAIN WIG! Lol. I am glad that you are beginning to feel better and were able to get in some of the exercise you enjoy so much.
Linda, I am glad that you do not have brain mets and that you now have a definitive reason for your tongue and speech issues. I hope that the planned treatment solves the issue once and for all. I am sorry that you now have liver mets. Those of us who have had that type of progression know that it can be a shock. I am glad that you decided to go ahead with chemo in spite of your previous thoughts about it. I know that I will make that same decision some day. I believe that taxol is a good treatment choice, and it can be very effective. I hope that you will soon be able to tell us that you are NEAD.
Patty, How is your decorating coming? Are you all unpacked? Will you be posting pictures for us?
Hugs and prayers to everyone, Lynne
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Linda, I'm very relieved that your MRI was clear for brain mets. Hopefully a bit of rads zapping and the Taxol will obliterate that met on C1. It's amazing that one tiny met is causing you so much discomfort and worry. And yes, as you touched on earlier, chemo for Stage IV is much more of a maintenance approach to keep things from progressing, vs. the high doses those of us who were early stage endured for that. And don't forget about the option of cold caps if the idea of hair loss worries you, although I have to agree with everyone that Wendy's new look is awesome and literally has given me a new perspective about that eventuality. And Wendy, I see not only Julia Roberts but some Shania Twain resemblance -- both exceptionally beauties -- and you're pulling it off while doing chemo. Amazing!
Lita, congratulations to your daughter. Beautiful photo of such a special event! Your smiles tell it all!
Lulubee, Piper is adorable. How old is she?
JFV, I'm so sorry you're officially joining the Bone Mets group, but happy to see you're also a dog lover with two pretty relaxed looking pooches. As far as initial tx, I had 18 mos. of success on Anastrazole as my first line of tx. I moved to and did well on Faslodex + Ibrance for 19 mos. after that. Many ER+ women these days are being given Letrozole + Ibrance as first line tx for mets, and I'm guessing that might be your onc's choice for you. If so, it's a pretty easy combo for most, with low blood counts, fatigue and maybe some thinning hair being the worst SEs of Ibrance -- but nothing to fear.
Hope everyone has some enjoyable plans this weekend. My sister is visiting from the East after attending a medical conference in Chicago. Always fun to catch up with her, and I know she's working on some immunotherapy trials now, so anxious to find out if any of them involve bc, or what she knows about immunotherapy for bc. Will of course share anything I learn.
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Wendy, you absolutely rock with that red wig! I love it! I would rather not have Taxol buddies with liver mets but hey I'm so glad that we can support each other.
Lulubee - My other Taxol buddy - how are you feeling?
OK you girls are making me jealous with wigs. I initially said I would shave my hair (which I will do instead of seeing it fall) and wear scarves. There are ways to wear scarves that can be very attractive. But, monkey see monkey do, can you girls tell me if the wig is comfortable and not too hot? My head sweats so much that, any recommendations?
I will be starting Taxol on Monday morning. Had some more labs this morning and then met with my nurse. We had an excellent meeting to evaluate my current situation/needs and we now have a plan as things evolve. I will also be part of the palliative group for timely care and/or meds and a social worker will also be part of the picture. A lot of stress relief for someone living alone.
Lynn - how did your kidney surgery go?
Love all the pics!
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LindaE, My kidney surgery went well. Thank you for asking. The surgeon was able to cut away the stricture and scar tissue causing the blockage. I have a new stent for the next six weeks. After that it should just be monitoring. I have too add that I was very happy to leave the hospital. The nurses were wonderful, and all the staff members were great, but I think hospitals are the WORST places to get rest or sleep. Also, who picks out what goes onto a "clear liquids" tray? Did you ever try Ensure clear apple flavor? Well, DON'T! Yuck, yuck, yuck. And why don't they serve normal flavors of jello? My nurse saved me by giving me Popsicles for my first couple of meals. Hahaha. Now that I am home, my DH is spoiling me and is planning to cook some great meals. He is a good cook.
Lynne
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Hello everyone, it's been a while since I posted but I read this thread every day, it's my life line to all things cancer.!! My news is that after 3 months on Abraxane every other week my TMs are going DOWN and mi new oncologist feels optimistic so he said that as long as I'm tolerating the Abraxane he will now see me every three months.
He also let me know my hemoglobin and iron levels are low so he ordered iron IV. I had not had breakfast this morning before leaving my house and I asked for some crackers and juice at the clinic which I ate at the same time they gave me the zofran on the IV and I felt ill for a while.
I also went Wednesday to see my new pulmonologist and see if we can get rid of this persistent cough. He ordered the records from my previous lung doctor and ordered a Ct of the chest next Tuesday. He also added Albuterol inhaler for emergency wheezing and gave me a 6 day pack of prednisone. All of these symptoms are new for me. Never had problems breathing before bc. I stopped smoking 30 years ago and even then I only smoked one or two cigs a day. So I think it's related to the cancer this cough but will see.
Hope everyone who celebrates has a lovely mothers Day and everyone regardless has a pain free anxiety free weekend.
Aurora
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aurora. Nice to " see " you
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Wendy - it made my day to hear that you are eating ... i agree with your doctor that it is the mets not the taxol ... and obviously that taxol is working. exhale. enjoy the wig. wigs are fun. they just are. you look great.
Lulubee - awesome. I was thinking of you. Glad you are in the park ... does that mean you are doing well?
Hugs all around. Keep going ladies ... some changes in treatments, but that's really just how it goes.
>Z<
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Lynne, That's good news that your kidney procedure went well! My husband is a good cook too and it's so nice to not have to be the main meal maker. You two make a good team!
LindaE, What a relief that it's not brain mets. I hope the Tx resolves the tongue and slurred speech problem quickly and no more headaches. An incredible relief I'm sure...
OMG Lulabee, who wouldn't spoil that little love? I want a little dog soon badly but DH says NO!
Wendy, I think you look like Julia too. LOL! So cute! I love the style of that wig...
Lita, Congrats on your graduated daughter and good job Mom! A testament to a great mother.
Deanna, It's nice to have a great relationship with a sister and would be nice to have someone so close to talk with "medically" speaking.
Photogirl, I love your "baby" pics!
KD, Any news?
Welcome back Aurora!
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Lynne, I'mso glad you are feeling better. I was wondering where you were. I had not seen you lately!
LindaE thank goodness no brain mets!! That's a huge relief off of your shoulders.
Thank you Artistatheart. I love and search for baby animals. I can't resist photographing them. They always make me smile!
Deanna, you are as lucky as I am to have someone with medical knowledge, but my problem is my husband hates looking at my scans as a Radiologist. He passes the buck to another Doc. I think it scares him to see the reality of what's going on.
Wendy. Before I knew I had the liver mets I couldn't eat and felt nauseous just thinking about food. Since I have been on Xeloda I feel much better but on my week off I feel that same feeling. Try some anti nausea pills that's what I do.
I hope everyone can enjoy Mother's Day.
Hugs to all. Anita
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LindaE and all, so that's how it goes now. Bad news is really good news because it isn't the worse news.
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Lita, love the picture of you and your daughter! Congratulations to all of you because that is partly your accomplishment also! I totally understand the getting shorter! The older I get the taller my son gets ha ha ! Surprisingly enough my grandfather suffered terribly from osteoporosis. Almen aren't as prone to it, he lost almost 8 inches of height and had the telltale dowagers hump. As a young man he stood about 6 foot 2, and when he passed away in his 70s he stood about 5 foot 5. So I guess I'm carrying on a family tradition, although an UN wanted one!
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Lita congratulations to you and your family wonderful pic you look beautiful.
Gracie I've been thinking of you and your sleep issues. I take every night a little dab of Rick Simpson oil ( it's a concentrated cannibus oil) looks like molasses and tastes terrible but I sleep like a baby every night no dreams that I can remember and straight through till morning. It's expensive but last a long time because you only need a rice size grain of it and rub it on your gums and I guarantee you will sleep. Costs here 70 dollars for a vial and it lasts about a month. I've been taking it for two years now just at night . Just something to maybe consider.
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Mara, I can't here in Kansas it's illegal.
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Good luck to everyone currently tackling the taxol treatments!!
I want to thank Jensgotthis, yet again (!!), for pulling out that very interesting clinical trial. As cancers progress and become resistant to different treatments, mutations of all kinds, and especially mutations in the p53 tumor suppressor accumulate and the cancer becomes more aggressive.
In this phase 2 trial, taxol was tested on MBC in combination with an oncolytic (cancer-killing) virus vaccine, which was designed to target and kill cells that express mutant p53 (normal cells do not have the mutant p53). The results were unusual- they did not see much of any benefit in terms of time to progression on the treatment, however the patients who got the oncolytic virus together with taxol saw a doubling of overall survival,! In this study, it went from 10.4 to 20.9 months. So, the first promising results I've seen using an oncolytic virus, and something to keep an eye on as it presumably goes into phase 3 trials- thanks!
Here is Jen's link again: https://breastcancer-news.com/2017/04/07/metastati...
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Also, the virus is called Reolysin, and the FDA accepted it for fast-track for metastatic breast cancer in May
From the company website:
"Fast Track designation represents an important step for our clinical development plan, which is squarely focused on a registration pathway in metastatic breast cancer and advancing REOLYSIN to regulatory review as quickly as possible," said Dr. Matt Coffey, President and CEO of Oncolytics Biotech. "Our goal is to conduct an End-of-Phase 2 meeting with the FDA as soon as is practical and obtain scientific guidance. We are eager to leverage this designation and use the opportunity for more frequent dialogue with the FDA, as well as the potential for an expedited review process, to support the future development of REOLYSIN."
In April 2017, data from an open-label, randomized, phase 2 study assessing the therapeutic combination of intravenously-administered REOLYSIN given in combination with the chemotherapy agent paclitaxel versus paclitaxel alone, in patients with advanced or metastatic breast cancer (IND 213) was presented at the American Association of Cancer Research Annual Meeting. The combined treatment demonstrated a statistically significant increase in median overall survival. Based on Oncolytics' evolving understanding of REOLYSIN's mechanism of action, along with the positive overall survival data generated to date, the Company is pursuing metastatic breast cancer as its primary focus for late-stage clinical testing.
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Wow. I have been watching Reolysin since I was diagnosed. One of my complementary doctors thinks it is the cure for cancer but it has really struggled in trials. And the result of that trial you reference ... are odd. But i am glad because they will be able to raise money keep studying viral therapy. There is a tool in there somewhere, I am sure.
>Z<
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Z, thanks for thinking of me. The picture of Piper in the park was taken a couple of years ago, actually. We got her right after I was diagnosed Stage IV in 2010, and gave her to our son before I told him about the recurrence. He was 10 at the time and I knew he would be devastated that the cancer had come back after three years of thinking mama was gonna be okay. Getting him that little fur baby was one of the smartest moves I've ever made as a mom. She's been a ray of sunshine for all of us!
I am doing pretty well right now, except for the usual scanxiety (CT on Tuesday morning). Just had my 11th Taxol infusion, which took off the last of my eyebrows and now I feel like ET!
We just got home from our week in Florida for my son's baseball nationals tournament. Had an absolutely grand time. My onc gave me the week off Taxol so I had some energy and felt good enough to cheer my fool head off like a good baseball mama. :-D My only hiccup was a 7-hour gallbladder attack from hell midweek. I have a mesh metal stent in my common bile duct (thanks to lobular mets sneaking in there in 2013) and I really should have known better than to eat barbecue and fried okra while I was so far away from home. So for the remainder of our time there, I ate only fruit, yogurt, and graham crackers and did fine. No problems since then. I am not telling my onc about that episode because I am just not in the mood for gallbladder surgery this summer.
I am a bit scarce here on the boards right now until I get past my son's graduation and all the festivities and hoopla for that, plus three May birthdays in the household, and the birth of grandbaby #2 who is due any time now. (!!!!!!!!!) I will be taking care of our 2 year old granddaughter (baby's big sister) the week of the birth. LOTS going on this month and I am dancing as fast as I can! But I'm reading all the posts here in the meantime and I promise I'll be back!!
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Wow, Lulubee, you Rock!!!
I'm lying here thinking "I wish I had her energy, and I'm just a caretaker. It's my wife that has cancer." What a great example of how we can continue to live life to the fullest even with MBC. Thank you.
Happy Mother's Day to all the Bone Mets Moms!!! Praying for a restful night and a wonderful day for y'all tomorrow.
Louis
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Lulubee how amazing you are you just keep going at it a great role model for me for sure.
Heard some very sad news tonight Carol Ryder passed away. I am heart broken we became good friends on Facebook and the last thing she said to me was if you ever need to talk I'm always here for you. My heart goes out to her family so awful , I will miss her humour and kindness as long as I'm around. I'm hoping she is somewhere wonderful where there is no cancer.
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Hi everyone my last bloods girls were awesome last week my tumour markers were 160 then on Femara they went to 80 then 68, 37 and now 25. My calcium and hemoglobin were low now normal . 6 monthly CT scanner in June plus 3 monthly bone scan so another hurdle to jump overIs it more likely that lesions are healing with tumour markers going down so rapidly? I am taking Chinese herbal teas under a very good practitioner and acupuncture and last weekend I did 19km up a mountain so I am definitely getting stronger.
This site is very busy I miss a few days and there are pages and pages of entries. I used to be very afraid to read the stage 4 sites there are so many girls having ups and downs . I have noticed there aren't many Aussies on the bone mets thread. San Francisco looks amazing is it a cold foggy place or usually warm? We have had Mother's Day here in Australia you guys are probably just starting yours so relax and enjoy whether you are a mother sister Aunt daughter or grandmother ❤️❤️❤️
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To all my bc sisters!Enjoy today always
Bab
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Wendy, such sad news to hear of Carol's passing. I hope and pray she went peacefully surrounded by her loved ones. RIP dear Carol. Thank you for letting us know Wendy, Carol has been on mind so much lately.
Louis, oh my you are not just the caretaker! I was in your shoes years ago, we are so much more than caretakers and try to assume all roles at once and it wipes out all our energy. Allow yourself to take time for yourself and recharge your batteries. We always do the best we can as things evolve and occur and that's all we can do. Your presence in itself is a blessing.
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Wendy, Thank you for letting us know about Carol. I will miss her and I too hope she passed peacefully. I will always remember her one post where she outlined what many of us were doing in spite of cancer.
Louis, You must be exhausted and it's good to hear that you have some support and help. How are the boys doing?
LindaE, You know I'm with you tomorrow as you start Taxol. I'll be the one giving you a hug and holding you close.
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Such sadness to hear of Carol. I pray her family may find comfort in the fact that she put up one heck of a fight and is no longer needing any treatments or have anymore limitations. She's an angel. May god bless her and her entire family. May she have everlasting calm and freedom from ever hearing the word cancer again. ~M~
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Thank you so much Lindalou!
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Thank you for letting us know our much loved Carol is no longer in any pain. Such a good heart and soul
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hi all!
so sorry to read about so many progressions lately, hope everyone does better on their new regimes. And I'm heart broken about Carol, thank you Linda for letting me know. I had sent her several PM's & didn't hear, I was worried that she was in trouble.
Wishing all the moms here a lovely, pain-free Mother's Day.
It is 3 years since that horrible day when my phone went crazy with 3 Dr's calling about my re-diagnosis, I thought I wasn't going to survive the year.
hugs to all, cheers, dee
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Oh my gosh!!!! Carol, I sent her an email last week, that's crazy, I know she was in pain, but they did not even know from where. WTH!!! So fast, just a few months ago, she was gonna walk me to another Onco for Dani, that's just crazy.
I am in mourning. What a wonderful soul. Carol. I can't wrap my head around it. Deanna you ok? Carol thank you, thank you my friend, for being so giving. May peace be with you.
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