How are people with liver mets doing?
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B-A-P: what Province are you in? Usually a MO can put up a good enough argument for the Provincial plans to cover it. Sometimes it is considered "Off Label" but you still might get it covered under Compassionate Use. I hope you get it!! I shaved off my hair rather than have it fall out in chunks. Or have long hair and bald patches and look like I had been a victim of nuclear bomb fall out. I am sorry to hear of your progression. It sucks.
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Susan, I think it’s Lynparza. She was calling it by another name though. I think it’s chemical name. Anyway , just waiting to see if my blue cross will allow me access. They’re pretty good about making arguments for use.
Elderberry , I’m in Newfoundland -my pharmacy access team is pretty good at getting drugs approved. They got approval through my husbands but with insurance we have to go through the primary , and where I have blue cross , I have to use that first. So I’m not sure if I can still get access Through my husband’s if my insurance rejects it
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b-a-p: I hope you are not near your current wild fire. The rock has been spared such things since 1961. It has become an annual event here. I guess if the drug is not administered in the hospital than it is not coved under the province's coverage. All my treatments thus far have been in a hospital setting. I was supposed to go on a drug that costs something like $1200/mth but then my treatment changed. But there was an organization out of Ottawa that was going to pick up the tab. Can you apply under Pharmacare? Or do you have to be an Old Fart like me?
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Elderberry,
I’m not near the fires no. Thank goodness. My in-laws are closer to the area but they said the smoke wasn’t as bad today. It’s going a little slower than they predicted so hopefully they gather control soon. My sister in lw has a cabin in the area and they aren’t allowed in the area so hopefully all will be spared.
As for pharmacare, I think because I have insurance And I’m very young , I don’t have access to that. I might end up with compassionate care but they said access is hard bc it’s mainly given access to ovarian cancer patients. So I guess we will see. I know they’re trying and that’s all I can ask for. Navigating it on my own would be a nightmare
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Dear BAP, oh my, Olaparib is very effective with BRCA1/2, let's just hope it gets approved sooner for you. Also newer PARP inhibitors are on the way in clinical trials. Fingers crossed!
Saulius
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BAP - come join us in the Lynparza/olaparib thread! We've got myself, Candy, and SeeQ currently on this treatment. The first five to eight weeks can be a tough adjustment period, but its been a far more enjoyable drug for me than Ibrance.
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sondra , I’ll prop over once I find my status. Looking at you guys it gives me hope this treatment can work. Hoping to hear back soo
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Has anyone heard from Kattysmith???
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Kattysmith hasn't been seen on this board since December 4, 2021. I fear the worst.
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Sending everyone Hugs today
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We’ve lost so many valued members recently and others, like Moth, are struggling. As I posted on another thread, I’m feeling the weight of this disease today. Sometimes I’m just tired….
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Sending you hugs sadie. I suspect many of us are struggling, processing, thinking about loss. Yesterday I didn’t do much; I really felt the need to sit with my thoughts about moth. So many of us here on BCO have expressed our love and caring toward her, it felt like it was time for me to be with her, in her pockets. In my mind it kind of feels like we are taking turns sitting with her. She knows we care and love her. I was relieved to see the post on IG from her daughter.
Today feels brighter. I’m trying to really stay present, to focus on here and now. The vertebroplasty procedure in July fixed 3 compression fractures in my back, the pain is gone. I have a month off from medical appointments and the cancer dance. And best of all, my hair is growing back! I know that things can change overnight. And that MBC is relentless. Sigh. Flowers and gardens feed my spirit, this is perennial fuschia at the Van Dusen Botanical garden today.
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Thanks Pots. That it such a lovely way to put it, each taking our turn sitting with Moth. I hope she feels our presence, holding her hand and wishing her peace.
I’m glad that the vertebroplasty has done the trick. My bones have given me lots of trouble, primarily from impingement of the nerves in my spine but I have been fortunate so far with no breaks despite my extensive mets. I find it interesting that so many have bone mets and never have symptoms and I’ve been treated numerous times as things crop up.
A break from appointments sounds lovely. 😊 Fortunately the Xeloda seems to be working well for me, getting the liver mets back under control. My tumour markers keep dropping which is encouraging. I scan at the end of the month so we shall see. I’ll be interested to see what my MO wants to do at that point. Previously he wasn’t comfortable keeping me on Xeloda as it is clearly toxic to my marrow with increasingly wonky RBC numbers. However, when I took a break last summer after Xeloda pretty much wiped out my liver lesions it was no time at all before they were back. After back to back fails on other chemos I wonder what he will suggest. Not sure if it’s better to take a break and then beat it back again or try a low dose of Xeloda to see if my marrow can tolerate it.
Enjoy your time off and your garden. Mine is slightly overgrown but continues to bring me joy. My fuschias are brilliant this year and other plants are thriving as well. Here is a shot I took from my porch showing the montbretia and an underplanting of hostas.
Hope everyone is having a good week.0 -
Susan, I am on Anti-androgen called Enzalutamide (brand name Xtandi). I have been on this on for 2 months and 3 weeks. Having a PET scan tomorrow to check if it is working. If there is no progression, I will continue on this otherwise I may revisit other chemos that I have already had earlier.
S3k5
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Bev, You were such a good friend and a supporter while I was scheduled for liver Mets ablation two years May you RIP.
I'll miss you on these forums.
S3k
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I decided to skip chemo today. I was in the hosptial on Saturday with post ablation syndrome and I still have pain (oddly enough my pain is NOT in the liver) but rather in the upper stomach area...and I have waves of nausea bad (which I had before the ablation and I think its related to stomach acid). I went to get chemo bc I wanted to see if my numbers have improved since the hosptial on Saturday and they have they were all perfect. The CT in the hosptial showed some acites which I have NEVER had. (my MO feels its just from the ablation I have no dissention in my abdomen). After I decided to cancel we went down to see my MO (she had just gotten in it was like 8am, I just love her!!!! She saw without an appt just walking in and she sat with us for 20 min talking. I will be getting a CT scan next Wednesday to check that new lung met and see if it has grown..if it has we are switching treatments she would like me to go to a trial...I am debating Gem/Carbo though bc I want to get NED so that the new TM drug I am about to start that did amazing for TNBC in trial (65% had NO recurrence) (if you want to know about the drug google dr. Linda Vahdat and Tetrathiomolbdate). Anyway in the trial the TNBC women all were NED from chemo then this drug kept 65% recureence free..it does not kill cancer. cells but rather targets CSC;s. So I feel like the gem/carbo could get me NED since my burden of disease is considered low. Mostly some bone mets and now 1 lung met (all my liver mets have been ablated or Y90'd).... So if I can get NED with the Gem/carbo then the TM can do its job even better....However my MO is leaning towards a trial that targets CHEK2 mutation bc that is what my last biopsy (from a year ago in the liver) showed....she feels like trial now is the way to go while disease burden is low bc those chemos ...gem/carbo. ...taxol... navelbine will always be there....
Any thoughts? Husband, BSandra, Cure, anyone??
PS: After losing Sam (Raggas Rabbit) on here it was so so hard for me, but BEV...was really hard as she was like one of my first friends in the stage 4 forum... I almost feel alone now
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How long is the TM trial recruiting for? What exclusion criteria might there be? Is there any chance you can do the CHEK2 mutation trial first, bail if it isn't working. Then reverse any progression that occurs if with Gem/carbo and go into the TM trial?
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Husband the TM trial is over. It is not recruiting. Dr. Vahdat will be doing another one in the future but there is no set date.Im getting the TM from an intergrative doctor that worked closely with Dr. V. She refers people to him now. He is NOT an ocologist and everything is pay out of pocket.
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Nicole, then it sounds like the TM therapy would be available at any time. How long of remissions are the NED patients getting on it?
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Husband:
"After a median follow-up of 4.5 years, progression-free survival (PFS) was estimated at 84 percent. There were no differences in PFS between nodal status or molecular subtypes, and no relapses occurred after 10 months for those who achieved PFS. Importantly, PFS was seen in about two-thirds of triple-negative patients classified as with stage 4 no evidence of disease (NED). The estimated overall survival was 90.6 percent after a median follow-up of 4.5 years. Two patients who were not copper-depleted had a disease recurrence—one patient at cycle 2 and the other at cycle 10. "
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Nicole,
What is the CHEK2 trial she wants you to join? Gem/Carbo didn't work at all for me, the only chemo I've been on that didn't work. But I'm a very different oncotype than you. Might work better for TNBC.
I agree with Husband's call. Try the CHEK2 trial first. That being said, you know your body best and you've made the right calls so far.
Hugs, Susan
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The CHEK2 trial is in DC. Georgetown I believe. If the tumor is big enough to biopsy I may apply again for the NIH CART trial in Bethesda MD...
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That copper depleting therapy sounds really good. Is there a trial that is expected to be published? Or if that was published, can you steer me towards it so I can find it and read it? Thanks!
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I don't know where it is husband sorry...I do have articles...but if you google it youmight be able to find it.
PM me if you want me to email the documents I have.
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Nicole, By CHEK2 trial do you mean a trial using PARPinhibitors on cancers with DNA repair gene mutations, like CHEK2? Used to be just for BRCA mutants but now they are expanding the eligibility to other genes in the same pathway as BRCA1. If PARPi, like talazoparib, some are combo trials that also have immuno or chemo- put a link to the trial?! and definitely let us know if you learn more about what NIH/Rosenberg is doing with their adoptive cell transfer trial....
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Dear Nicole, TM, I think, does not interfere with any used therapy but if you are in the trial, you'll be not allowed to use it?
Saulius
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Curious... Dr. Rosenberg is the doctor for the TM (which I have currently and already met with him) I am going to start in a week or 2.
NIH TIL I will find out about after I scan this coming Wed
The trial for the CHEK2 is https://clinicaltrials.gov/ct2/show/NCT03209401 its that plus carbo.
Saulius..I know a trial will not let me in with the TM so I may have to delay the TM till I see if the trial is working..we will have to see.... My MO prefers the trial but I don't bc that CHEK2 mutation was "new" my bone mets have been there since I was ER+ I don't believe they even have that mutation which would mean that the trial wouldn't work on them..though the carbo could..... I do know some people in a trial who are taking the TM and not telling the trial bc the TM does NOT kill cancer cells (as I believe you know) this drug is designed to inhibit angiogenesis (formation of new blood vessels) therefore, this drug assists with stopping the progression and or reoccurrence of cancer.
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I am sorry to let you all know that Moth passed away on Friday Aug 12th. I just read a post by her daughter on IG. She was in her home.
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RIP Moth. You made a difference in so many lives.
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Fly away, moth.
Thank you for letting us know this sad news, nicolerod.
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