Bone Mets Thread
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50' girl Hawaii or Phuket are in our wish list however 7 hours plus layover or 12 hours does put me off as my 28 hours from New York and Paris then home last Aug was painful as I didn't know I had extensive mets in bones at the time . I love travel but as it's been a fairly new diagnosis I am nervous how I will hold up 😀
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Hello to all,
I don't post alot but follow and keep up to date on everyone.
AmyQ, I'm ecstatic to read your excellent scan results! Wow, you made my day! I am so happy Xeloda is working so well for you.
Txmom, yay on stable scan results! Stable is good and we'll take it right?
Momallthetime, I think of you and Dani daily, sending you healing hugs.
Hugs to everyone here, Annie
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Annie you are missed! Thank you for the prayers, always welcoming. Waving back at ya.
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Amy - I'm absolutely thrilled to read your results! It put a big smile on my face.
Txmom - Stable is awesome news! Another smile on my face.
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Thrilled for your news, Amy! And that 11 years on Xeloda story is extremely hopeful and one I will remind myself of every day now as I'm about to embark on that path.
And great news on your scans, txmom! Happy to see both you and Annie! Annie, how are you doing?
Babs, when's the wedding?
Hello to everyone else!
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Amy,
This is great news, thank you for sharing very exciting! I am so very happy for you!
Ronnie
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Yes, GREAT news regarding Xeloda. That's why my MO wants to keep me on it as long as we can.
Z: my shoulder is a little better, still hurts but I can move it a little more now. Still have to baby it. Thank God for my stash of frozen "medical" brownies. I eat a small one 2 hrs before I want to go to bed, and I sleep for about 5 or 6 hours.
Dr. Weil is the best regarding nutrition. With respect to eating meat, try to get free range, organic whenever you can, and I agree eating it a couple times a week won't hurt that much.
Lots of controversy over whether one should drink or not. More and more evidence supporting the link between alcohol and cancer. Then again, millions of Italians and French people aren't coming down with cancer like we are here in the US. I think there's much more to it: pesticides, contaminants in plastics, lack of exercise, drinking too much soda pop which doesn't flush the tissues the way water does, etc.
OK, that's my 2 cents 🤔.
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Amy, such good news you've shared!
Txmom, congrats on your good scans!
Deanna, Sounds like you have decided on Xeloda. Wishing you the best startingit and may you have a long run on it.
Lita so good to hear that your shoulder is better.
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Lita, I'm happy to hear your shoulder is feeling better!
Deanna, I'm doing pretty well, thank you for asking. My bone scan was in February, it had been a year since I had my last one. The results were that everything is stable. All the mets that were radiated are sclerotic. My white blood cell count has also recovered from all of the rads so I'm happy about that. I think of you always and wishing you the best with your next treatment. Have you made a decision? I know you had a couple of options.
Hugs to all, Annie
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Annie, It is good to hear that your latest bone scan results were good and that your white count has improved. I miss your posts when you take breaks from us, but we all need them sometimes.
Txmom, Congratulations on your scan results, too. Stable is always a good finding for us.
WOOHOO to both of you.
Hugs from, Lynne
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Amy, great news!!! So glad to hear it!!!!
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So good to read of the ones that have had good scans!
I'm happy your shoulder is better Lita. I agree with you on the diet! It is terrible that we have to worry about everything like we do!
Wendy I hope your se are not going to be bad. I haven't had much from the letrozole. Mostly from the trial.
The trial makes me feel nauseous the day of and day after. When I get this weekly it just depresses me the days I don't feel good. I had improvement from my bone scan so I'm trying to remember this during the time I feel yucky. My Ct said it looked as though I had progression but my doctor said they go with the bone scan because they are sclerotic. The Ct she said picks up the inflammation. Has this been the case for any of you?
Misty
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Yes, Misty, that's happened to me in the past. Progression was ruled out because of inflammation on two instances if I remember correctly.
Deanna - wishing you a good and long run on Madame X.
Lulubee - thinking about you. Are you doing better I hope?
Good to see you Annie and congrats on good results!
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Misty, that's exactly what happened to me on my last scans, so this week I had a pet to see what's up. Won't know until next week
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Deanna. The wedding is 4/2. So exciting!!!!!
I hope x brings you to stable or NED. I was on X for 10 months my longest treatment since becoming stage 4. It brought me to NED for 3 mos.
Annie so happy for your good results!
Bab
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Thanks, Gracie and Linda. My mo and clinical trial mo both agreed it was improved. It is just hard to see that word progression on the CT.
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Linda, thanks for asking, it's sweet to be remembered.
I think I am finally turning a corner, thank God! My oncologist must be some kind of wizard or prophet or something. When I was in the hospital in January with the severe pericardial effusion and just beginning to reckon with all the lung damage from that, she told me that it would take about five Taxol infusions to heal my lungs of the pleural effusions (fluid build up) and atelectasis (scattered areas of collapse).
Well, I have been on oxygen 24/7 for six weeks, really struggling with my lungs every which way... and then this past Monday I had Taxol #5... and voila', I haven't needed oxygen since then. I mean, it was literally like a magic wand fluttered by. In fact, I feel like I can really breathe for the first time in a few years. (I have had some fluid and atelectasis in my lungs for years, I suspect going back to my time on Afinitor.)
I am still very weak from the whole, prolonged mess and being inactive for so long, and my heart rate is still touchy and too high. But I did manage to make it all the way around the block today without someone dragging the O2 tank along beside me, which felt like a miracle. Baby steps.
My bone mets pain is easing up also. Oh, and my tumor markers have taken a big dive: back down to 28 now! :-D
Taxol is no picnic, and I'm bald as a plucked chicken-- but hallelujah, it looks like it might be doing something good.
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Poking my nose in on the bone mets thread again. I just sent you a PM, lulubee. Hallelujah! It's great to hear how things are improving for you. Rather, how you have improved things for you. And the low tumor marker! Honestly, I think you need a superhero cape and a big L with stars on your shirt.
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lulubee you made my day I'm so happy you are turning a corner I've heard very good things about Taxol😊
Katharine you have with your words again calmed the Wendy monkey brain. You know how you sit and talk yourself into all kinds of horrors till you're a basket case (especially if you have been indulging in a little green therapy) well you are a blast of reality and I can't tell you how much I appreciate it. Sometimes it only takes one word and our little bonds of understanding and caring and love help each other through this nightmare. I think if I was alone I would go crazy. Love you guys all of your sufferings break my heart and all of your joys and successes build me up. I hope I can reciprocate to all of you but mostly I wish I wouldn't need too😌
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Lynne, thank you for your kind words. I do keep up to date here, I read daily I just don't post much. I find it overwhelming at times and I get so emotionally attached to everyone. I find this to be an amazing group and I pray for each and every one of you everyday.
Babs, thankyou! I'm so excited your planning your daughter's wedding, it will be here before you know it! I'm so looking forward to seeing some pictures.
LindaE, nice to see you too!
Lulubee, honestly you amaze me. I'm with Shetland, you need a superhero cape. And you never lose your sense of humor, that is truly a gift! So happy to hear things are improving!
Apg, it was the opposite for me. At one point they thought I had progression on a bone scan, it was shortly after rads. The radiation oncologist compared it to the CT and said it was healing and the lesions were sclerotic, the bone scan was picking up the inflammation. I remember a couple of other girls having the same thing happen. My MO explained it to me saying that sometimes when the bone is healing it can look like progression. My RO said that sometimes as the bone fills in it can appear to be larger on a scan. It's all so confusing, I hope I've made things a little clearer and not confused you more.
Hugs, Annie
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Hi everyone, I don't post often but read all posts and rejoice with the good news and pray for relief on the not so good ones.
I had my second Abraxane infusion Friday and my hair started falling dramatically so I had my son in law shave my head Monday. What a relief! No more itching scalp.
I'm excited because my mom is coming to visit in April! She's 84 and in good shape for her age but you never know what might happen and we both feel this could be one of the last times we might see each other. She lives in Mexico.
Hope everyone has a nice relaxing night .
Aurora
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Auroaya hope you manage the Abraxane well.
Lulubee yeeh for you,this is just terrific. I could feel the relief with you.
So not the news we wanted to hear, everything is more FDG avid, larger lesions, AND new ones.
The liver is bilobar hypermetabolic numerous, increased lesions size, the works. ASCITES, i hate this word, it was not there SIX WEEKS ago, yeah, I am kinda screaming, quietly, BUT...it's insane. This thing was holding Jan. and then it just exploded. I guess the ALP does mean something. I don't know today's BT results, but i'll see it at the end of the week.
A new Lung nodule. Osseous active with multiple increase in degree of FDG and size!
Email with Onco, she needs to discuss it - but :
She's gotta think it through - BUT is considering IMMU132 - she said they just opened a cohort for ER+. FDA approved for TNBC. Being that she had a high level of AR she said D could be considered for it. Still working through.
I emailed back how about radiating the lung nodule, and I just thought - how about biopsy of it! What could it show?
How crazy is that????
If the ascites are there, they better get a move on it fast, time seems different for them. So I think, they see this all day long, because she could have these results by 4sh, i got it 430, why didn't she brainstorm already??So here we go again. NO freaking break for her. She doesn't know yet, I could not bring myself to tell her at night, first she was busy with the kids, and then later i think gets too late. She knows something is up, I usually call her the same day, she knows I will get the report, but she knows something is being cooked, she doesn't know how bad it is. Something is gotta give.
Open for ideas.
Take good care everyone,
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Momall, I'm so sorry you got those results!! Grrr..cancer is awful!!! Will be holding you and your daughter in prayer!!! Praying they get her on a treatment that really does the job of kicking the cancer to the curb!!!!! Big hugs for you both!!!
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Praying for Dani and your family, momall. Her treatment is way more complicated than anything I've ever been through. But, I will say I experienced my MO as she is " thinking through/ brainstorming " my new path with the new brain met. So, yes, sometimes they have to take a step back, review what's been done, and what the options are. Some docs are probably more open about the thinking process they are taking.
Hugs and prayers to you all and your docs!!
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Lulubee - I was happy to see your message this morning! There's progress girl! Baby steps go a long way.
Mommal - I'm so sorry. We want things to move fast but MO needs a bit of time to brainstorm and most probably consult with her colleagues. Nodule biopsy will depend on the size. It must be so hard for you to update Dani with the latest results. Sending you and Dani love and hugs.
Kaption - Am I reading correctly that you now have a brain met? I may have missed something. Did you have a change of tx?
Aurora - Nice to see you pop in. Enjoy the time with your Mom!
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LindaE,
Yes, I am officially not just bone mets anymore. One brain met has been seen in the fluid in my right temple. I was already switched to Xeloda the first of February and will stay on it. I was doing a 7/7 trial, but after the brain met was found I was dropped from the trial and put on the standard 14/7. I'm in the middle of my 14 days. On the 20th I take a Xeloda break to get 10 rads on that spot. It seems it was found very early and Xeloda has been shown to help brain mets. The worst news is that it's in the fluid.
The brain mets discussion board has been very helpful and supportive. Definitely been a roller coaster couple of months.
Aurora, nice to hear from you.
Hugs to all.
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Momall...I'm devastated for you and Dani. Prayers coming your way!
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MomATT, this is so hard. You are amazing to me, the way you manage all of this with Dani with such thoughtful care and love. I just want you to know that I am thinking of you today as you navigate these rough waters. Bless you for being such a wonderful mother (friend, cheerleader, advocate...). I am praying, both for you and for Dani, and all the family.
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Kaption, please know that you are in my thoughts and prayers. Hugs
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Thank you, Gracie!
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