How are people with liver mets doing?
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Nicole,
Glad that the chemo went well, but very excited that the PET results were not what you thought. Also, great that the IR confirmed that those liver tumors are not growing. I know from my own IR that it's difficult to read the tumors after ablation. In fact, when I remember, I tell the techs to put it in their notes because otherwise some radiologists who are not familiar with ablation procedures can read them incorrectly.
Now fingers crossed that the Doxil crushes those cancer cells!
Bev
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Thank the Lord, Nicole. And good your husband could be with you during treatment. I hear our cancer center is not allowing family with the patients---family must stay in cars. I am not getting IV chemo, so it doesn't apply to me. And I go to my appointments by myself anyway.
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nicolerod- Nothing has never sounded better! Thanks for letting us know! Glad you got to start chemo today. Just love your matching message with your hubby...Praise God.
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thanks hopeandgratitude, JFL, and Shetland Pony for your replies! I much appreciate the information.
Grannax2 --- I loved your pics---so elegant! they made me smile
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Hi all,
While I was on an H+P and Doxetere regimen To treat my wide spread bone and lung mets, the liver became aggressive in both lobes. My MO put me on faslodex and verzenio and we continued with Herceptin only infusion. Three month scans and the liver spread. Stoped all other tx and was put on Doxil, went this Monday. Had a severe reaction and they chose not to rechallenge the drug. So we we-regrouped and I went back today to start Herceptin and Carboplatin. No reaction, thank goodness. Fingers crossed this works. When we were talking about plans, I asked my NP about y90 and chemoblast-whatever after reading several posts on this thread, specifically from Dr Lewandowski. My MO is Crostofanilli, in the same group as Lewandowski at Northwestern. Anyways, the NP, who I question often, said y90 and similar treatments (not sure what all is out there) is for liver contained to one lobe and liver that is easier to get to. She really didn't talk about it at all bc it wasn't relevant. So I'm wondering if anyone can substantiate her comment regarding it being in both lobes and if anyone has had experience with Carbo. I'm not finding a lot about it. TIA!
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Jjonik,
I can't comment on the drugs because I haven't used any of those, but I can comment on the local liver treatments. I had a microwave ablation done by an interventional radiologist at Hopkins. But that IR originally wanted to do another procedure -- chemoembolization. I sent my films to Dr Lewandoski and he said that he thought I should do a microwave ablation of my largest lesion (which was about 2 cm). That's what we ended up doing. But I have liver lesions in both lobes -- the rest are just smaller than the one that my IR took out with the ablation. So that NP is wrong.
I would get a consult with Dr. Lewandoski, especially because you are there already. Also, if you want to read more info about local liver treatments, you should look at this thread:
https://community.breastcancer.org/forum/8/topics/...
There is a ton of info on there about Y90 and other local liver treatments. Good luck!
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Thanks bevjen. I think I’ll reach out to see what he can tell me.also really interested in that thread, this area liver mets) just seems hard for me to understand and I don’t know why! Everything else I’ve been able to research and wrap my brain around it. I’m guessing it’s bc the liver mets have come at times when I’m feeling great and hopefully.
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Thanks so much Bev Candy and Anew!!
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Jjonik,
I think that it's difficult to figure out anything local for liver metastases because it's not so widely used with breast cancer. Plus, I think that many MOs are not so keen on local liver treatments. My MO wanted me to go straight to systemic treatment. We compromised, and I went onto faslodex but not onto Ibrance at that time, and went through with the ablation. After about 3-4 weeks of healing from that, I started Ibrance. But Dr. Lewandoski has written a ton of articles on using local treatment on many kinds of cancer, including breast cancer, so he's the one to talk to. What a team you would have then -- Cristofanilli as your MO and Lewandoski as your IR!
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joinik. You are the luckiest woman in the world to have Dr Cristfanili. He's my favorite doc ever. I was his patient at MD A. I'll send you a PM with my real name but he also called me Zebra. I probably owe my life to him. Give him a hug from me, please.
I've heard great things about Lewinsky, too. Even from my friends here in Dallas ..Definitely set up a consultation with him. Of course you can have y90 on both lobes. I did twice. I had a liver full of tumors, especially recently when I had my second set of y90s. There is a lifetime maximum of yittrum but you haven't even had any yet. Also it can be done while you have active tumors in other places. I have it in my lung, chest and liver. There is certain criteria the IR will look at. Only take a no from him. I hope it will be a yes. There are many systematic TX you can stay on while you are having y90. It's usually three procedures. Mapping, first lobe and a month later second lobe.
Gumdoctor is home on Hospice. She got to go home on Tuesday. Her husband said she is much more relaxed and comfortable there. She's still unable to speak but she responds to him. Her sisters and sister's in law are taking turns staying at their home in Chicago. That's helping her husband a lot. He said we can send cards/ notes etc. If you want the address PM me. 💞
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Granmax- Just saw the news about Gumdoctor...thank you for letting us know.
Glad she’s home with DH at her side. What a bright light she has been here! She had to fight to get decent care which was so unfair.
Wishing you peace at last Gumdoctor.0 -
NicoleRod - Glad to hear that there are no new growths. I am sure you must have been so anxious....I know how I feel every time I am waiting for results. Sounds like some good news and hopefully the doxil will work for you. Happy the chemo went well. Praying rest of results come in well. Even if it sometimes doesn't feel like it, God is with you so hold on to that! He may not take away the pain, but he goes there with you.
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HOPE...AMEN!!! The struggle is real but so is Yeshua!!!
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can every one give measurments of there tumors in liver . my mother's biggest liver tumor is 16cm almost the whole of left lobe and some discrete lesions in right lobe.. she is on ibrance and aramidex started a month ago .. all her liver tests are fine except AST its 44(normal 35).
worried daughter
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Jjonik, the NP you spoke to is not informed about Y90. He/she sounds clueless or confused. Most MOs and IRs are not informed about Y90 in BC (even good ones) so not surprising he/she is not either. However, you have a great MO and are in the right practice group if you are looking into local treatments. May be best to go straight to the MO on local therapy questions. The way to get to tumors in Y90 is through the blood supply. It has nothing to do with where the tumors are located (whether they are close to the surface or in an easily accessible area). What can have an impact is if the tumors are not very vascular and do not rely heavily on the blood supply to grow. Most liver tumors do heavily rely on blood supply. That is what makes the liver such a rich micorenvironment for tumors. The NP must be confusing Y90 with another local procedure for single or oligometastatic mets. I have a liver full of tumors and had Y90 on both sides. They do one at a time and space them apart. If fact, I don't recall hearing from anyone who only had Y90 in one lobe. Most people have Y90 on both as Y90 is one of the few local therapies that is indicated for extensive liver mets. The types of people who get Y90 tend to have widespread liver mets.
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Can anyone help....... After months of being constipation free....Doxil is now constipating me I was bleeding pretty bad this morning trying to go. The only thing that actually made me go is because I used a glycerine suppositories... Yes I am taking miralax and magnesium... I just want to know if anyone has tried Castor Oil for constipation? It's probably the ONLY things I have not ever tried.... I just can't seem to find anything on line if it interferes with Doxil... (I will cross post).
Thanks friends....
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JFL- thank you for explaining Y90 with both lobes etc.... Information I want to have in my pocket for the future. I know we have to stay informed with local treatment options. My MO tend to stay along the lines of standard treatments. I doubt my MO would ever recommend Y90....when in reality it could feasibly be used as a line of treatment for those liver mets to keep things stable. But, it feels like you have to be in the right practice place for MO to be informed, recommended or support Y90.
Faripari- glad to read your mom’s liver functions are mostly good. Ibrance slowly but surely worked away at my tumor markers and my liver functions also respond accordingly.
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nicolerod- rejoicing with you! So good to see your beautiful photo
Grannax-please let gumdoctor know she is special and we are praying for her
Jjonik- I had y-90 to 2 tumors about 4cm each in the right lobe that showed barely visible on a recent scan! I had only bland embolization in the left lobe 4cm because the IR said the vascular mapping showed it would be too dangerous to put the radiation beads on that side( they would leak out to other organs) I had it all done in between doxil treatments. (Which did not work for me) so I'm really glad my MO was all for local treatment to reduce the tumor burden in my liver.
Faripari- the whole left lobe sounds scary. But her numbers are good and we can live on 20% of our liver as long as it is working. Hoping the treatment works, its hard to wait and see. Has she had a genomic study to see if there are mutations? I have ESR1 so I take faslodex shots instead of the AI pill.
Leftfootforward- hope you are feeling ok.
Arolson- hand foot sucks. I had it with Xeloda and doxil. My heart goes out to you. I put gel inserts into crocs just to be able to walk around. I iced, used lotions, peeled the dead skin off carefully and had my husband do chopping and dishes. I’m glad I’m off those but would have suffered through if either had worked.
One year metastatic and doing pretty well!!!
But I am already having scanxiety. Next set is May 5, results on May 6. I am hopeful that my current systemic treatment is working because none of the others have. Some of my liver numbers are not the best and my blood sugar and cholesterol are climbing on Afinitor. WBC,ANC and platelets are low so I get bloodwork almost every week then give myself the filgrastin shots. Trying to avoid thinking what if’s.
Getting scans and results at home due to corona. Don’t want to fly to Houston just yet. Will send cd to MDACC to consult results over video with MO sometime later.
Cancer sucks and isolation sucks but glad to be alive!!
Dee
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Anewbreath, it took my MO 6 months to come around. I started floating the issue well in advance of when I figured I would need to take it. His first response was to be shocked and he gave me a hard "no". However, a few months later, he talked to another MO at our facility who had a few BC patients who did Y90 and read some research and finally came around. Now he is a big supporter of it and has suggested I get a second round. I am fortunate in that he doesn't have an ego - he has no problem learning and changing his mind based on new information. My MO before that would have never done that for ego alone.
Nicole, I think I may have had constipation the first 5 or so days of Doxil. I found it helped to stop taking the anti-nausea premed they gave me as I realized it causes constipation although that medication wasn't the only contributing factor. Also, you may want to take a stool softener preventatively for a few days if you can pinpoint a time when you have the constipation. I didn't have major problems on Doxil but when I had a major issue on a trial medication, the only product that worked was milk of magnesia when NOTHING else worked. That stuff is a miracle.
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Thank you AlabamaDee!! AlabamaDee....praying you have no progression at upcoming scans!!
JFL...yes I believe you are right and its the Zofran. I already messaged my MO and told her if its ok I don't want any at next infusion.
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JFL- I love how your MO had a change of heart and that you played a big roll in that! This is good for me to hear as I’ll likely have to push the envelope if I want to explore local treatment option that are not palliative. Than
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grannax , can you mention my username as someone thinking of her to gumdoctor please ?
Nice of you to have us informed
My best wishes to all of you.
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anotherone. Sure. I may text him today to see how things are going. I'll let all of you know what I find out.
I don't think my MO was really convinced about y90. I see her in June. She's been on leave since before covid. I don't think she knows about my excellent PET result yet. I hope I get to tell her the good news. I know she'll be happy and I think a little surprised. She has no ego problems either, PTL💞
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I just tested with Prince Charming. He said the Hospice nurse this morning was surprised at how strong she is. We're not surprised, right? She's still fighting.
I told him about each of you responding to the news. Used our BCO names, no real names. He was so appreciative to know how many of us care for her.💞
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Grannax, yes, our Gumdoctor is strong. Thank you so much for the continued updates on Gumdoctor and for passing along her address to me. I’m on my way to walk a card and note for her down to the post office to mail.
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I mailed my card, too! I am hoping her DH can read it to her and she can hear my words.
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Our strong friend Gumdoctor passed away last night at 10:30. Her husband just texted. He said he and one of her sisters were with her when she passed. As far as I know, they did not have any children. I think she had two sisters and two SIL.
Fly Away Home, Gumdoctor💞
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Gumdoctor, may she rest in peace.
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Very sorry to hear this news. May Gumdoctor rest in peace. She will be sorely missed.
Sending love to you all during this sad time.
--Your Mods
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Grannax,
Thanks for letting us know. She is at peace now, and I hope she is smiling down on us. So very sad.
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