How are people with liver mets doing?
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Elderberry yes!!!!! We need to stay in contact. When will you get results? I should have them the 21st....or sooner...but probably 21st because I go in then
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Hello All -
Update...had first images since starting clinical trial. 3 images in last 2 weeks after 4 IMMU-132 study infusions. Next MO appt on Monday. Just read 2 reports that popped into the portal today...
1. Worsening liver metastatic disease with both serial size increase in some existing mets with numerous new mets developing.
2. New minimal perihepatic ascites developing when compared to previous reports.
This is obviously very bad news and not what I expected. Seems nothing is going to work for my liver.
Don't know what it means for continuing in the study either. Seems she casually mentioned at the beginning of the study that if more than 10% size increase in liver mets, I would be pulled from the study.
Will see what she says on Monday.
Thanks for reading and being here for me.
I am at our 2nd house right now so cannot talk with husband about this until tomorrow when I drive to see him. He lives closer to treatment so I usually drive over on Sundays before Monday treatments. Then I stay with him and leave for 2nd house (and 6 kitties) on Thursdays...what a routine...
Gumdoctor
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gumdoctor , those are very scary news. My commiserations, hugs and wishes for something that deals with those lesions to be found.
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gumdoctor I am so sorry. Virtual hugs and tears. I hope your team can offer some news/plan that will offer hope. wish I could be there with you.
Thinking of you.
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Gumdoctor, That's a really disappointing report. I'm sorry you have to deal with that. Is your trial one where some get the drug, some get placebo? (Maybe all are set up that way?). I too hope your MO has some good advice for your next step. Hugs to you. Rosie
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Thinking of you, GD, I just want all of this SHIT to stop (in a good way...) for all of us. Sending you a basket of hope and kitty treats from Texas.
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Gumdoctor,
Thinking of you today. Not the news you wanted, I am certain.
Cannot remember if you pursued Y90 for your stubborn liver mets? Or if you have any interest in looking into CAR T therapy -- the last time I checked, a few months ago, NIH was still recruiting patients (this was the Judy Perkins trial). I know it's not an easy treatment, but you don't seem to shy away from difficult treatments.
You have such strength of character. It just shines through. I hope your appointment goes decently on Monday, and that your oncologist will have great advice for you.
Bev
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Gumdoctor, is it time to rebx your liver mets?
If you have to leave the trial, can you consult with an IR to look at targeted therapy for the liver? Cannot remember if you had ablation or Y90 in the past.
S
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HI All -
I so much appreciate your kind concern and support. I did tell husband over the phone. I need time to process these bad reports, and there have been so many...I decided it better to give him more time to process as well. He is an engineer and his coping mechanism is to just find out the facts and deal with it. He moves on quickly from any emotional discussions about this or anything. Sometimes a very lonely situation. I have 1 close sister to talk to and that's it...
I have had no localized liver treatment. The 2 times I discussed it w/ MO, she indicated because of my blood clots (now dealing with 3 and have to give myself Lovenox injections every day), local tx may not be an option. Eliquis failed early on.
I will certainly bring it up again on Monday.
BevJen, your kind words are so meaningful to me about not shying away from things. I work hard at that. So much of it is connected to my internal female Army Colonel "persona"...a blessing and a curse.
I won't shy away from things if they are hard. But I am very very tired. I don't know how long I can keep trudging forward with all this. I had a very hard heart-to-heart talk with my MO. Explaining how extraordinarily hard things are for me, I whipped my pretty wig off my head and threw it on the floor. I was venting about how people look at my head and they see a part in my hair (expensive wigs look so real) and they say, "But you look SOOOOOO GOOOOOOOD!?!?!?!?" Like they are so confused or don't believe my diagnosis. In my exasperation, venting, I ripped it off my head and said..."Well this is what I REALLY LOOK LIKE!!!!!!!"
She was so sweet and sympathetic, she reached over and quietly picked it up and gently placed it in my lap. She listened. She heard. She gets it. Before she left the room, she told me she loves me...
BTW this picture was a month ago. I received kind of a big military award. This is one of the few medals/awards worn on a lavalier.
Ok...enough venting...I so appreciate you all. I will post an update after appt on Monday. I am supposed to have study treatment but I suspect she will cancel it and make plans to move to Halaven (her plan for when IMMU-132 failed).
Grateful you all are here...
Gumdoctor
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Good morning everyone! Thanks for all your replies. Apologies for a long post!
I would say that patients in Sweden definitely have a say in their treatment and in general I find my oncologist very open to talking about new ideas. He works half time in research so he always recognizes what I am talking about. I spoke to a good friend who actually runs one of the US leading breast cancer centers and she says that there is a certain tendency in the US medical system to do more tests and scans than in other countries, particularly if the patient asks for them and has insurance that will pay for them--but that in her honest opinion they aren't always medically motivated. In other words they don't do harm and they do provide income for the treating physicians and all the middlemen. On the other hand now that I am "heavily pretreated" and my list of options is smaller we are getting into the area where drugs may have been approved by the Swedish government but not by the county council paying the bill. I've never been denied yet however.
Hopefully scan results wednesday and then will ask about both Y90 and FOundation One. I read the official national review of Foundation one as a new stanadard and the conclusion was that Sweden already has similar alternatives in place. Or who knows maybe the Halaven is working! In the meantime feeling like I have a bad flu after friday's treatement--not uncommon--so back to bed. Will keep everyone posted!
FYI I seem to be too technically challenged to fill out my profile correctly despite encouragement from the moderators! so in short
diagnosed at stage IIIB ( I guess) 2012, radical mastectomy, lymph removal (right side), 5/5 cancerous
5 years remission, declared "cured"
2017 diagnosed with MBC spread to lymph nodes on left side, lymph removal under left arm
2018 spread to bones (spine, ribs, hip) and later liver
2019 continued spread to bones and liver, liver biopsy shows that I have switched from ER+PR- HER2- to ER-PR-HER2+. HOWEVER I was recently denied for a dutch study that also tested my liver and deemed it to be triple negative. My oncologist is still convinced I am HER2+ at least in some of the tumors so I continue with herceptin.
Have been treated with Taxol, NAB-pax. navelbine, xeloda , Kadcyla and now eribulin (halaven) plus Herceptin (with and without Perjeta). Also biosphenol (sp?) to reduce bone loss (hypercalcemic)
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Gumdoctor, adding my love and support to the circle around you. This is all so scary.
Arolsson, are there any of the newer Her2 drugs available?
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Shetland I was just thinking about you. It's almost time for your y90, correct? Keep us posted.
Gumdoctor my heart dropped when I read your report. Every time I read those words about my stubborn liver mets, I feel the same as you are feeling right now. I wish we didn't have to have livers to live, I get really angry with my liver. Which does no good whatsoever.
Your MO sounds amazing. I'm very interested to hear what she has to say on Monday. If you find yourself looking seriously at y90, ask me anything. I'm the queen of y90s, you know. LOL
Congrats on your award. I'm thinking my next chemo I may have to lose my hair. If so, I want a wig like yours, maybe in white. It's beautiful. 💞
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Gumdoctor...I was overcome this morning with sadness reading your bold posts....I guess when ever someone here posts these things about treatment failing and such I take it personally I feel like I am failing with you.
All I can say is I am feeling this with you and that I am sad with you, and I am fighting with you...and I am hoping and praying...FOR you!Arolsson, are you saying that Herceptin failed for you??
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@nicolerod I've had Herceptin with other chemos Herceptin plus perjeta with other chemos, and TDM1 (Kadcyla) which includes the anti HER2 agent. Did worse on the Kadcyla which could be explained by the fact that I have "striped" tumors--many different tumor types in the same biopsy. So targeted agents don't seem to work for me but they keep me on the Herceptin for the 10% of cells that may be HER2+
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Catching up on posts.
Gumdoctor- No words. Damn this disease. Some good responses posted though. Y90 possibility? Maybe placebo in trial? Re-biopsy possibility? In your pocket on Monday. God bless you.
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Gumdoctor, when I see your name pop up I immediately send up a prayer that your post, please God, be good news. Then I read about your progression, and tears fill my eyes. In those tears, I'm looking for specks of light. Here's what I found. You've got a great MO that listens to every part of you. You've got a supportive hubby and that engineering mind will see you though your next course of action. You've got a wonderful sister to confide in. (I've got one of those and she's a treasure.) And if your next course is Halaven, it's not a terrible treatment.
Of course you have the absolute right to say "Piss off - I'm not having any of that. Today I need to rage and vent. Or be sad." And that's ok too. We're here for all of it. Sending you hugs ~ JL
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Gumdoctor, just popping in here to congratulate you on the military award you received! Since you describe it as kind of a big deal, do you care to elaborate?
I must say, your wig, sweater and scarf selection along with your huge smile all combine to make you look gorgeous! Isn’t it amazing how a few cosmetic additions can conceal the true realities of a disease that pushes us to the limits of what we feel we can tolerate? I’m glad you gave your MO a better viewpoint of what you’re actually going through, dramatizing it by removing your wig. I, too, had the type wig so realistic that the majority of people were fooled, so I know what a difference they make in appearance. I bet you stayed on your MO’s mind for quite awhile after you spoke with her.
All my best to you. Many hugs for you.
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Divine Mrs M -
Thank you for your kind words and support. The award signifies I was accepted into the Order of Military Medical Merit. It's kind of a big deal in the military medical community because you had to make significant contributions to the entire medical department in ones military branch. It is hard to get in. I was nominated in 2011 and was denied.
My "enterprise contribution" was 13 years serving in the area of dental patient safety. Among many patient safety things I was blessed to be involved with, I was the only dental officer in the Army who trained master trainers in all 6 Army Dental Regions across the world in TeamSTEPPS. I also wrote and presented patient safety training materials presented to more than 5,000 military and civilian dental personnel.
TeamSTEPPS has crossed over into the civilian medical comminity also. It is a communication system to significantly reduce preventable patient safey errors like taking out the wrong tooth and working on the wrong patient...
I did all this and more while holding down my "regular" positions like treating periodontal patients, running perio departments to teach dental and oral surgery residents, being in charge of large dental clinics, working as Deputy Commander of dental activities (DENTACs) and overall senior dental leader.
I miss it all...so much...
Gumdoctor
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I'm praying grace and strength for you Gumdoctor.
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Gumdoctor, my goodness, what a wonderfully busy career you had in the military medical community! That's quite an extensive and impressive list of contributions you made in your field of expertise in addition to going about getting your regular work done. No wonder you miss it. I hate how this disease robs us as individuals and also robs the world at large of wonderful contributors like you who add to the greater good. I have to say, tho, I'm glad that all your efforts, thoroughness and hard work were recognized and awarded!
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Wow, Gumdoctor, that sounds like quite an accomplishment. You should be proud of all that you have accomplished.
It is hard to walk away from such a high level post, I'm sure. But now you need to worry about you.
Good luck with your MO tomorrow.
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Dear GumDoctor, as NIcole said, I also feel like I fail when someone from this community suffers but... let's not put guns on the ground - immunotherapy might fail but it can make tumors more "visible" to other therapies. We know you are tired, how could you not be? I wish with all my heart your MO has a plan. If you feel that plan is weak, go for another opinion. There should be something to reverse things. Lot's of warmest hugs (although I have never met you), Saulius
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Gumdoctor congratulations for your award! It is so important to be reminded that our identity is not just "terminal patient". KUDOS!!!
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Update All -
Surprisingly...ONC and research team do not think changes are bad enough to take me off the study yet. The level of progression does not meet the removal criteria for the study. And ONC wants to monitor ascites more before doing anything. So I am hooked up to chemo right now. Almost done.
Thank you all for your incredible support. And for your very kind words about the award. You all mean alot to me.
Gumdoctor
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Awesome Gummy!!!!!!! Praying it works!!!!!
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I am a mystery to my doctors and cancer sucks!!
In just 2 months on doxil, My left lobe tumor doubled in size to 4cm and the 2 tumors in the right lobe only increased by .5 cm. Good thing I got my Y-90 and bland embolization last week for the big tumors because the doxil isn’t working. I now have lymph node involvement, more mini liver mets and suspect lung mets. They found an artery to the spleen “engorged” and an angiomyolipoma in the kidney.
next step is trying to get in a clinical trial in Nashville for the ESR1 mutation that I found. If not I will go on Afinitor and Faslodex.
Frustrating that I have not had any meds give me stable tumors or shrinkage.
Dee
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alabamadee- sounds like you are unique.
One tumor has mutated and others have not.
I am hoping you get access to the trial meds you need.
Good luc
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Nicolerod: My MO said he would have the results of my scan before I go on a quickie getaway Feb 24-27. I told him I didn't want to know until I got back. I could be celebrating while away but I could be bummed out. So I can wait. I think .........
Cheers
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Gumdoctor! Yeah for continuing the clinical trial. Never thought that I would be congratulating someone for having chemo. But so good to hear they are proceeding and you and your liver still meet the criteria.
And by the way, you looked great in that photo.
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Yay, Gumdoctor! Glad that you can stay the course for now.
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