Bone Mets Thread
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Wendy - nose bleeding only a couple of times and very little.
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Lita~. I can understand the sobbing part. Hugs for anyone who needs one today. ~M~
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Lita, Beauty comes from the inside and I think you are one of the most beautiful women I have known audio far in my life. Thank you for being you!
Hugs and prayers,
C
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Lita, Beauty comes from the inside and I think you are one of the most beautiful women I have known audio far in my life. Thank you for being you!
Hugs and prayers,
C
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Hola ladies;
I'm always happy to stop by here and find out that some of us are doing well with good scans.
I'm doing ok but I went through hell and back. Two hospitalizations,fluid in my heart and lungs, I had a drain put in my right lung.
The MO wanted to change treatment asap so after two weeks the drain was taken out because of the risk of an infection.
I've been on abraxane and gemzar, two weeks on and one week off. I finished the first cycle and this is my week off. MO says that it is two early to say if it is working or not and i don't see much improvement in my health. I hope this combo will do wonders .
I miss running and play tennis so much that sometimes it brings tears to my eyes.
Take care everyone
Ziz
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Ziz~ I know how that feels. I do break down in tears. It's a normal way to feel when going through something this awful. I am so sorry that you're having a hard time. I will send my prayers out to you. Gentle hugs ~M~
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Prayers and hugs Ziz.
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so the POG has actually been a benefit still trying to understand this stuff.
The homozygous deletion of BRCA2 and high BRAC mutation signature , together with high mutation burden, high HRD score and low expression HDAC2 all point to the use of PARP inhibitors or platinum therapy. This patient may be a candidate for enrolment in one of several upcoming clinical trials of PARP inhibitors , including a Phase 1 trial of Olaparib + Cediranib.
So this is what I got out of it. Will take awhile till I understand this all and a phase one trial is scary for me. However my onc did say that the other drug used has been used on humans for other issues and is not dangerous it's just the two together that makes it a phase one study. If any of you ladies understand this stuff or have any thoughts I would be grateful.
Love the ladies that do the Ct scans they did my brain this time and I had mentioned to the tech how nervous that makes me going home and sweating about it for a week till I hear anything. Then she said okay a little secret if there was anything in your brain we would make you stay after the scan to rescan and You can go home. Yeah so brain is still good for now.
I swear sometimes I think the stress involved in this disease is the worst part.
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Wendy good to here you don't have to "really" wait to hear of any negative results for your recent brain scan, hopefully her tip has put you a ease a little at least! Prayers to all of you who have recently posted negative results from scans and test. My heart goes out to you and you all are in my daily prayers.
Ronnie
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Wendy, I couldn't agree more about the stress. I was happy to finish my chemo about a month ago and start tamoxifen, but I still tend to stress out about every ache I have. I also developed a bad case of lymphedema in my left leg due to radiation treatments I had in my hip from bone mets. It's been tough trying to adjust to a new normal. Thankfully I have a wonderful husband and son to help me through the hard days
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Linda I just had a call from my oncologist she looked at my ct scan on line and my liver tumours are all dead. No activity at all it's all scar tissue she said. I'm gobsmacked and over the moon. So believe in your treatment it works.
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Wendy!
What is 'the POG"? Is this the first news you have that the cancer has BRCA mutations?
BRCA mutation is required for response to PARP inhibitors, so that category of drugs should be great for you. The BRCA protein is required for DNA repair, so having the mutation would make the cancer more mutagenic, and so one possible good combo would be PARP inhibitor plus immunotherapy.
There seems to be a lot of excitement about the PARP inhibitor Niraparib, which is currently being tested in BRCA mutant ovarian cancers, and they have had great phase 3 results. They are expanding trials to include immunotherapy, and expanding the combo to different cancers, including breast, but it seems to be just for triple negative breast cancer. You might want to call the trials to ask if ER-positive but BRCA mutant breast cancers are specifically excluded, not clear on that.
Here is a press release from March:
http://ir.tesarobio.com/releasedetail.cfm?releasei...
Also, the angiogenesis inhibitor you mention, Cediranib? That combo worked really well in platinum-sensitive ovarian cancers...
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Wendy. Great news!!!! Celebrate
Babs
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Wendy - THAT IS AWESOME. Boo-yeah. Yes. Yes. Yes.
Exhale and get back to taking care the very best care of yourself. With that kind of result you have many months of no worries ahead ... and great next step for treatment ... PARP inhibitors are very interesting. I think you are out of the treatment transition torture zone for the foreseable future.
Yes. Don't worry about phase I trials if they are repurposing a drug already being widely used. It's a common type of Phase I.
Love the news.
>Z<
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Wendy, GREAT news for you! What a good feeling to hear good news! Very happy for you! MBC is certainly a roller coaster ride and not for the faint of heart.
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Ziz, Hoping that the new combo will bring you back to playing tennis and running soon.
Wendy, Such good news! Head for that dragon boat!
Almost had a chance to attend ASCO this week in Chicago. Anxious to hear what is presented as far as Keytruda and Abemaciclib.
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Wendy, WOOHOO! What great news. I am doing the happy dance for you. It is so good to hear such positive news.
Lindalou, It's too bad you couldn't attend the ASCO conference. How did the potential opportunity come up? How are you feeling?
Ziz, I hope your new treatment plan brings good results to you.
Hugs to all, Lynne
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Wendy~ congratulations on some well deserved news. You're a trooper. Big high fives all around! I am so happy for you, enjoy taking a well deserved breath for many months now. Relax!!! ~M~
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Lynne, I'm doing pretty well on cycle 2 of Ibrance. ( hope I didn't just jinx that) My dh has scans coming in a few weeks. Your dh? How are you feeling?
For those of you enrolled in the MBC project, Corrie and Dr. Wagle will be presenting a poster on Sunday, June 4th and will live stream that I believe. I could only attend as a patient advocate through an organization that will be represented at the conference, but their 2 spots were filled quickly.
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Yay Wendy!!!! Happy to hear the good news. Also, saline nasal spray everyday will minimize the nose bleeds.
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Wonderful news, Wendy!
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Wendy - I cannot even begin to tell you how happy I am for you!!! You must be so relieved. It sure gives me hope. How many cycles of Taxol did you do before scanning? You have to celebrate this girl!
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WWWEEENNNDDDYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
(insert an imaginary emoji of Snoopy doing his inimitable Happy Dance!)
Tipping my wig to you today! LOLOL
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Wendy thrilled for you!!! What a moment.
Lindalou you are so sweet, thanks so much, yep I know it's designed for prostate cancer, but her ARis 70% and with that it SHOULD work just fine, hmm yeah. Anyway, i truly appreciate your input. I'll pm you.
My sil wrote an email to a bunch of CEO's from the Ins, telling them that he really hopes his wife does not get worse during the phase that they did not bother helping out, well in no time he got a call back that they were working on it. In the meantime, Dani sent quite an email to Onco's office, kinda saying that it was obscene the amount of time they were taking in getting it together. And cc'd me so they know that other ppl know.
Anyway after all this drama, D called the new Onco we are ging later today to ck for clinical trials.
Deanna sweetie hope you feel better quick.
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Linda that was after six infusions first scan this is all very preliminary the radiologist hast looked at the scan yet this is just my oncologists evaluation sure hope she is right. Anyway I'm not going to dwell on that I'm going to enjoy this news for the weekend.
I just wanted all of you ladies to get some good news it always cheers me up to no end when anyone gets a break from this hell. Even for awhile 😊
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Good morning, ladies. Just a really quick note, as I'm several pages behind here, but figured I'd at least try to jump in and hope to get caught up later.
First, Wendy, I am so happy for you!!! Such an unbelievable response! I'm sure you're still pinching yourself today.
MomATT, your son-in-law made a very wise move in writing to the insurance companies about their actions (or lack of action) being detrimental. I've heard in the past that's the one thing they fear and will respond to -- an accusation that their delays or denials are to blame for a serious decline.
LindaE, your grand nephew is the cutest thing! Just want to kiss those rosy cheeks. What a heart throb he's going to be in the future!
Ziz, good to see you. I hope your new tx plan is as successful for you as Wendy's has been for her.
Z, excellent reminder about depression and needing to stay in the game! I have never been a fan of terms like warrior or fighter, as they've always seemed totally contrary to healing. But I think when it comes to depression and negative thoughts, we truly need to fight to stay out of the fear and darkness.
So I found out yesterday that the cause of my sudden illness was neither mbc nor Xeloda related, as I'd at first feared, but a raging E.coli infection exacerbated by severe hydration. Just finished up my last oral antibiotic. Thank goodness, because it makes me dizzy and ridiculously weepy. Still off Xeloda (going into my third week) until I regain some strength... but thankfully back to the land of the living. So drink up -- no matter how difficult it is -- b'cuz our meds can be severely dehydrating. In the meantime, thank you for the posts, PMs and concern. It meant a lot to me not to be forgotten by my tribe here.
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Wow Wendy! I am so happy for you! Enjoy! I hope this works for a very long time!
dlb823 sorry to hear what you have been going through, I hope you feel better soon! Good reminder for us all about how vulnerable we are when we don't keep hydrated.
Ziz, I sure do hope this works for you.
Lindae huge is adorable!
Momall,I think that was a great move by sil. I went through this trying to get on Ibrance. It took six weeks. I was terrified about the spread of the disease. I have been saying extra prayers for you and Dani.
Hugs and prayers!
C
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Wow Wendy! I am so happy for you! Enjoy! I hope this works for a very long time!
dlb823 sorry to hear what you have been going through, I hope you feel better soon! Good reminder for us all about how vulnerable we are when we don't keep hydrated.
Ziz, I sure do hope this works for you.
Lindae huge is adorable!
Momall,I think that was a great move by sil. I went through this trying to get on Ibrance. It took six weeks. I was terrified about the spread of the disease. I have been saying extra prayers for you and Dani.
Hugs and prayers!
C
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Polemonium, I was dxd with stage IV and also am on letrozole/Ibrance. (There is an Ibrance topic chat thread like this one you might want to check out if you haven't already.) Every insurance company is different. I received a PET scan every 3 months until this cycle...I am stable so my MO changed to 6 months. I am on my 13th cycle of the drug regimen, and after 1 year I am doing well. It is possible your cancer is slow growing so 6 months may be fine. They can tell a lot by your monthly lab tests with tumor markers. I don't know your situation, but you might also want to email (or call) your ONC and make sure he/she knows it was denied. Sometimes they just need to call.
But I agree with everyone--cancer sucks! My DH is very supportive and is considering retiring a year early so we can spend more time together. I am mixed about this because sometimes I don't want to dress, or shower, or do anything because I feel so ugly. But I am thankful he wants to be with me and it makes me get up and get going. And yes, our sexual life is non-existent right now. My daughter and 2-year-old granddaughter live with us so they also keep me going. Next week I will have my granddaughter for 4 days while her mommy is away for her job. This will be the first time they have been separated at night so this might be tough! I pray I have enough energy for this very feisty little girl. I am lining up a backup sitter just in case...
Thought I would add a picture of my granddaughter so you can all see what keeps me going!
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So adorable! She is precious! My 2 grandsons are my heart!
Hugs and prayers,
C
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