How are people with liver mets doing?
Comments
-
grannax2 - prayers for a perfect pre-procedure poppyseed prep!
Dee
0 -
Arolsson - Shrinking from 11cm to 5.6cm is amazing… sorry that the awesome news had to come with two growing lesions. I might look into local treatment (microwave ablation) of those lesions if they do not respond. From my reading (from a while ago), the rationale behind combining PARP inhibitors with chemo is strong, but they have some overlapping toxicities in terms of blood counts that can make combining them a challenge. I was on another PARP inhibitor (Talzenna) for about a year with minimal side effects, so I'm very happy to see others having success with PARP inhibitors! I have CHEK2 and FANCA genetic mutations. Do you have a somatic or genetic BRACA1 or BRACA2 mutation?
Lynne (50sgirl) – I'm so sorry about your disappointing scan results, especially after you've had such a great response to Adriamycin and have been tolerating it well. I will be praying that your oncologist will come up with a good treatment plan tomorrow. Hugs!
Grannax – I'm glad your biopsy went well and hope that tomorrow's Lipiodol procedure will be easy too. My IR said that recovery from microwave ablation is much easier than recovery from Y90. Hopefully, you will be able to start Halaven soon and it will work as well for you as it has worked for Nicole!
S3K5 – Are you still waiting on the IMPACT testing? For me, waiting for treatment decisions is tough. I hope that your new treatment plan will be both effective against your cancer and gentle in terms of side effects.
Hugs and best wishes to everyone! Theresa
0 -
moth. Exactly.
0 -
Grannax, all the best with your pre-ablation prep procedure and the microwave ablation procedure on Wednesday.
I am allergic to CT iodine dye so I got some steroids and Benadryl as premeds. I was fine during the procedure.
Please keep us posted about how things go.
0 -
Thinking of you Grannax2.
0 -
theresa45 , I am still waiting for the IMPACT report. You are right, this waiting is the worst!
BevJen, are you still waiting for the genetic profile results?
Lynne, did you find out about the next path forward in terms of your treatment? It is so disappointing when we go through so much during the treatment only to find out that the chemo has stopped working.
I am on Piqray now and it is causing severe UTI. I am on antibiotics since 5 days and hoping these symptoms will get under control. The antibiotic culture report says I am on the right antibiotic but it is taking forever for the symptoms to subside.
0 -
S3K5,
No, I STILL haven't gotten my Tempus report and I am kind of irritated, given that I was told it would take 5-7 days. Plus, my pathology report had some weird stuff in it.
Thanks for the update on piqray, because my doc loves to put people on it, and I have the mutation. I think I'm going to push for keytruda next, potential side effects be damned. I have tumor mutation burden high, which qualifies me for that drug. Better yet, the FDA approved for once every 6 weeks. That would be so wonderful. Over time, these monthly appointments (for all of us) are getting very old.
I will post when I hear about Tempus.
0 -
Bev Gen
Try calling TEMPUS. They sent me my report by email when I called. It was very quick.
Dee
0 -
Dee,
Thank you for that suggestion. They JUST GOT my tumor sample on Nov. 5. Really?
Anyway, they are sending me a document to electronically sign and said that they will send me the report when it's ready. ETA Nov. 14-16.
Really, like we need this baloney? One of the downsides of the large cancer center.
0 -
Bevjen, is Keytruda approved for HR+ve BC? I thought it was approved only for triple negative. I could be wrong. I need to do a better job of keeping up with recent approvals! What treatments are you on now?
I like the term "potential side effects be damned" ! I feel the same way! Just put me on some thing that works!
Piqray didn't do much for my liver mets, most probably because they mutated to triple negative. Will never know. I am still taking 50% of the Piqray dose along with letrozole since my MO didn't want to stop all treatments till the next one is lined up. She said that since it is keeping the bone mets stable, it may be worth continuing this for now.
0 -
S3K5,
I am still on fulvestrant and Ibrance, with dose just reduced to 100 mg bc the 125 mg was really beating me up. Starting new cycle tonight.
Keytruda was approved by the FDA in I think late June for any number of solid tumors, including breast, if there is either MSI instability or tumor mutation burden high. Those are not so common to my knowledge in hormone positive cancers, but the approval was irrelevant to hormonal/HER2 status. My doc said they can give it to me. She is just not nuts about immunotherapy -- or at least as nuts as I am. I also live pretty close to NIH, and they have various immunotherapy clinical trials at work, so there's that.
I think atezolimumab (which was listed on my original F1 report) is only approved for triple negative right now, but I've stopped following that one.
0 -
BevGen
Sorry they did not have it ready. Waiting is hard. Hope it comes sooner than expected.
FYI- My TEMPUS did not give me much but the RNA did have some new things. Dr Hamilton said this,
“she has copy number gain in a lot of pathways, but difficult to tell what may be a driver vs. just a passenger. She had no copy number changes (amplifications in HER-2), just overexpression in ERBB4 on RNA. That would not qualify her for any HER-2 trials but could always consider something like neratinib as a pan-HER inhibitor if insurance would approve. With just having some RNA overexpression without amplication or mutation etc. not sure whether HER-4 or EGFR would be very meaningful.“
I stopped looking for what is next for a little while. Now that I have the TEMPUS, I am researching again. I have 4 weeks until I know “if I stay or if I go” on the trial. So in my mind I have 4 weeks to look for next step possibilities besides Gem/Carb.Good news is my CA15-3 keeps going down. 35 in sept and 28.5 last week.
Dee
0 -
BevJen – I can't believe that Tempus just received your tumor sample when you had the biopsy 8 weeks ago! How high is your TMB? Did you get your TMB number from a circulating tumor DNA test or a tissue biopsy?
SK35 – I hope that you will have your IMPACT results soon! It's nice that you can continue on Piqray/letrozole while waiting.
Dee – It's a great sign that your CA 15-3 continues to drop by a significant amount! I hope that your scan in 4 weeks will show that you are benefiting from the CDK2/4/6 trial! Thanks for sharing Dr Hamilton's interpretation of your Tempus report. I wish that I understood it better and had some insight to offer…
0 -
Theresa45,
It's not as bad as you thought -- I had my biopsy on October 19th -- so it was 3 weeks ago. But still -- kind of irritating.
My F1 report (tissue biopsy) from May 2019 showed a TMB of 25 -- that's a lot of mutations for breast cancer. From my casual reading on it, that applies to only about 3% of all BC cases.
0 -
BevJen,
That's a much more reasonable timeframe! I thought you had the biopsy during the microwave ablation in August. Was your Oct 19th biopsy a liver biopsy? I hope that your Tempus report will be very helpful. I did not have a biopsy during either of my microwave ablations because my MO did not want one. I had a June 2019 liver biopsy that was analyzed by Foundation1.
Wow... a TMB of 25 is really high for hormone positive breast cancer! My TMB from a tissue biopsy was TMB-intermediate at 8. Does your MO have any theories for why you have such a high TMB? I have genetic DNA repair mutations (FANCA and CHEK2) which may be the reason for my somewhat elevated TMB. I understand your interest in immunotherapies.
Theresa
0 -
Hi, again, Theresa,
My two ablations were July 2019 and then this most recent one, Oct. 19th. I had a liver biopsy during each of those. The first gave me my F1 tissue report and the second gave me the Tempus report that I'm waiting for. I did have a liquid biopsy in August -- maybe that's what you're thinking of. That was a bit of a weird report too -- they couldn't pick up the ERBB2 mutations that showed up in my tissue report, and they couldn't pick up my ER+ stuff, plus it was a two parter -- one part by F1, and one part by BioCept which showed circulating tumor cells. My MO and my consulting MO both looked at the circulating tumor cell report and basically said -- well, you don't have a lot of cells circulating (only 2 showed up). So that was less than informative.
No one has any idea why my TMB is so high. It's actually really weird, too, because my understanding is that the cancer mutates with each treatment. I was on only one treatment from 2006 until 2019 -- letrozole. (I was also on tamoxifen from 2004-2006). I guess I just have weird cancer. Not all of the mutations, of course, are actionable, but there are several that are (ERBB2 x 2 different ones: PIK3). But I've got a whole list of others, most of which I don't understand and haven't researched. It just becomes overwhelming.
0 -
BevJen – I knew that you, SK35 and I had microwave ablations the same week, but it seems like such a long time ago that I thought it was during my first ablation (8/21), not my second (10/21).
You cancer does sound quite unusual! It's interesting that you presumably developed all those mutations without exposure to a lot of different treatments. It is definitely overwhelming researching tumor mutations. Even for a given mutation category, there are many different mutations. For instance, I have a PIK3CA mutation, but it's not one of the 10 or so specific mutations that were tested for in the companion test for alpelisib. So a breast research oncologist told me that he is less enthusiastic about alpelisib working for me. They just don't know much about all these mutations…yet.
0 -
Grannax, How did he Lipiodol procedure go? Are you feeling okay?
0 -
50's. It was a breeze. PTL. They gave me propofol which is wonderful. Don't remember a thing. My IR did say I snored a lot. Embarrassing but I know he's heard it before. At least I didn't talk the whole time like I did for the BX last week. They only gave me versed and fyntenal for that one. Tomorrow for the MW I will be under general and will spend the night. My daughter gets to spend the night. We were worried about that because of COVID rules.
Beg Jen. Now I'm wondering when my Tempus stuff will get there. UGH. I'm glad you called them. I was going to suggest that but Dee beat me to it. When it is done they have really informed people you can call to get easier to understand info. on what it all means. I remember talking to the F1 people. It was great. The MO I had at that time did not explain anything. Garr. She got fired.
I'm getting my bag packed for tomorrow. I probably won't post until Thursday. It takes me a long time to wake up from general anesthesia. I'm in good hands so I'm sure I'll be fine. 💞
0 -
Grannax- Pocket duty for you. Hugs.
0 -
I will be thinking of you granne
0 -
Grannax-pullimg for you!
I am trying to find out more about microwave ablation. I really like my MO but he just doesn't know much about anything thats not a systemic solution.
Theresa- I actually have a PALB2 mutation. It's defined as somatic because F1 had a tumor biopsy to work with, but could be germline as well. BRCA 1 and 2 do NOT have mutations, but apparently they are discovering more and more about how PALB2 is connected to BRCA2. I also have BAP1 which might be relevant in the future..
I actually joined that facebook group for folks with PALB2 mutations. It's mostly "previvors" and a good support for those doing prophylactic double mastectomies. Lots of messages saying "remember, you are eliminating your risk of breast cancer" When I gently reminded them that this major surgery is definitely risk reducing but not eliminating I got a storm of hate mail. Nobody wanted to hear that risk reduction is not the same as prevention, nor that a double mastectomy is not some outpatient afternoon boob job. "we are warriors" one wrote, which I understood to mean that I was not I guess. Anyhow the whole experience really freaked me out so no more facebook groups for me. I'll stick to the incredible wealth of wisdom, knowledge and compassion I find here!
0 -
aroisson. Where do you live? It seems like MOs in certain areas are more informed than others. If you want to look online my IR has videos and explanations on how he does it. You can find him at MTVIR. He's in Dallas but I'm sure he knows other IR s he could recommend.
Thanks for thinking of me today. I'm feeling good about it but I sure do want some coffee. 💞
0 -
grannax2, best wishes today. Ugh, the fasting prep* is so often the worst. Soon it will.be over and you'll be telling us all about it!
*I argue about it all the time too because hospitals keep giving outdated Info like "npo after midnight" which is not what the anesthesia evidence based guidelines are
0 -
Grannax – Praying for you right now!
Arolsson – Your PALB2 mutation may be germline. My FANCA genetic mutation was first reported by a Foundation1 tumor biopsy as a somatic mutation. The Myriad genetics blood test identified my CHEK2 germline mutation, but did not look for FANCA mutations at the time. When I responded to Talzenna, my MO ran an Invitae genetic test which reported that my FANCA is a germline mutation. In the study of Olaparib for BRACA-like mutations, 82% of patients with PALB2 mutations responded to Olparib! In case you haven't seen this:
https://www.practiceupdate.com/c/179c22ee-4e11-4ce...
I'm sorry that your PALB2 facebook group responded so poorly to your input. My CHEK2 facebook page is very supportive. Previvors are scared, but that does not justify attacking the messenger who is just providing the truth.
Theresa
0 -
50'sgirl- How was MO visit? I haven't seen an update from you.
0 -
Grannax hope all is well...
0 -
Praying for you Grannax!
0 -
Grannax, hope you are doing well today after your procedure yesterday.
0 -
Candy, Thank you for checking on me. My MO visit went really well. After reading the results, my MO had studied the scans and compared them with the August scan and felt that although there was progression, it was minimal. We discussed options, and he asked if I would consider staying on my current treatment. I was happy to hear the suggestion. He said that since my liver enzymes are now staying low, my TMs have continued to fall, and I feel so much better than I did in February, it makes sense to keep going with Adriamycin and dexrazoxane. He will continue to monitor closely. He will also keep an eye on the dilated common bile duct by monitoring the bilirubin count. I feel good about the decision. I have few options left, and there is no guarantee that the next chemo would keep things under control as much as the current one. I feel that the longer I say on this plan, the better off I will be.
Grannax, I hope you are feeling okay and that your recovery goes smoothly.
Hugs and prayers from, Lynne
0
![[Deleted User]](https://us.v-cdn.net/6037276/uploads/defaultavatar/nF0ALO3I3QJM7.jpg)
