How are people with liver mets doing?
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jaylea. I'm wondering about Doxil for me. They told me I had my lifetime maximum of A back in 93. I am 71. I don't have any heart issues except typical age related ones. My PCP keeps lipids under control w meds, BP under control w meds. I do have two heart murmurs. I've had a heart work up less that year that was OK. I hope I can take Doxil.
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Hey all. I started a new topic yesterday. I am posting the link to several threads. Any responses would be appreciated. Thanks.
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Grannax, my only symptom with the vocal cord issue was the change in voice. It was during fire season in CA so I attributed it to the smoky air. The ENT said it paralyzed in a good place (I guess there is such a thing) to not obstruct swallowing or air. Otherwise I believe they can do injections to move it. The tumor never was that big, I'd say maybe 6mm at most. It was just an unfortunate confluence of where and how it healed. Hope you get a good resolution on yours.
Wishing everyone a good Sunday ~ JL
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jaylea I think mine is 9mms. Sounds like yours was era around mine is not. I still haven't heard from my MO about TX. Maybe tonight.💞
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Well...the verdict is in. Just got home from MRI labs and consult with ONC.
There are now over 10 liver tumors. Largest one grew frkm 4 to 9 cm in 1 week of no tx.
Plan is to get port put in and start IV Carboplatin/Abraxane this week.
They are working on the scheduling and insurance issues already.
This is becoming a near emergency...have to contain it or I will not be around much longer.
Gumdoctor
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Gumdoctor, your plan sounds good. I was in a similar position five years ago. A good chemo can turn things around. What a shock. Can you do your first infusion even without a port? I did that with Taxol but I do not know about carboplatin. How are your liver enzymes?
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Shetland - She said we have to do the port to start. I am hoping for the turnaround you and others have experienced.
Scared beyond my skin...
Gumdoctor
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Gumdoctor (((((hugs))))) to you. I feel so bad that you are scared I would be too. You were brave even coming here to post. More ((((hugs)))) and especially prayers for you that the chemo knocks this out!!!
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Gumdoctor, I am sorry to hear the news. I am thinking of you and hoping chemo turns things around. It sounds like Carboplatin may be an issue but perhaps you could start Abraxane if the port placement sets you back timing-wise and you need to start something. I took Abraxane for 7 months with no port.
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Dear Gumdoctor-Thinking of you and praying that the chemo will knock those tumors out. May the peace the passeth all understanding be with you this week as you get your port and begin chemo.
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Gumdoctor. We're in the same boat again. My verdict came with a call at 9PM last night from my MO. She wants me to take Gemzar/ Carboplatin. She picked two drugs I've never been on before. My schedule will be Day 1, 8 and 15. I go in today or tomorow to have the nurse educate/ consent me. I don't know what day I start. I already have a port.
Saying goodbye to my white ponytail. 😢 And hopefully goodbye to my ten new liver tumors and my mediastinal monster, I want to keep my voice.
Here we go Gumdoctor, holding hands as we jump into the unknown.💞
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.Wow Grannax...you sound so positive. AMEN I pray I can be so upbeat if /when I find myself in your position.
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Gumdoctor and Grannax, I find myself without words but will sit with you, hold your hand, and worry alongside you for a while. Then, as we always do, we'll stand up and say, "Well, let's get after it." Today may not be one of them, but there are good days out there yet to be had. Sending you love and support always.
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Thanks Jaylea and Nicole. I'm just so ready to do something, anything that will make a difference. Give me more time with my family and friends, especially my sweet grandchildren. They are only 12 and 7.
Gumdoctor. All that in ten days. Unbelievable. Cancer is cruel.. 💞
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jaylea what was gemzar like. SE etc?
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Grannax - First - Thankfully they called you!!!
2nd - Yes we are jumping into the deep end and together!!! My port is going in tomorrow morning. Report time 0700. Will find out when chemo starts soon. Insurance is taking their time...
3rd - You and I are going on similar tx - Carbo/Abraxane for me, Carbo/Gemzar for you. We will lose our hair together - Woo Hoo!!!
4th - Thank you for visiting and commenting on my daily Facebook posts. These posts are becoming inceasingly important as I continue to process all that is happening in my body...and so quickly...I am assuring myself I have at least one positive thing to look forward to every day...after yesterday's news...today's post was extremely difficult...but I pulled the rabbit out of the hat and did it. Yay!!!
Gumdoctor
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Thank you to everyone for your amazing support. I am still scared because this thing has turned into a liver monster...it MUST be contained and quickly.
I am not ready to let go of this life...
For those that pray...prayers are appreciated...
Gumdoctor
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Gumdoctor- Prayers for you now and in the days to come.
Grannax- Prayers for you now and in the days to come.
Why is this happening to such lovely ladies. I HATE CANCER
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Thinking of you Gumdoctor and Grannax2. In your pockets for port and chemo. Picture all your BCO friends holding your hands!
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Gumdoctor, I believe in the power of prayer, and I will continue to pray for you and also for Grannax. I pray that your new treatments will be effective. I pray that neither of you will suffer from harsh or prolonged SEs. I pray that your inner strength overshadows your fear and doubts so you can focus on the beauty around you.
Gumdoctor and Grannax, God’s arms are wrapped around you as he watches over you. Your friends and supporters here are available if you want to complain or vent or share news. You are not alone
Hugs and prayers from, Lynne
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I found out that my MO had some sort of family emergency and may have taken some days off, which would explain her calling later than expected. Actually, it was my son who overheard the nurse say something, he just forget to tell me. UGH. But it's all history now, moving forward.💞
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Grannax and Gumdoctor,
I don't post here often, but wanted to share my story in the hopes it might be encouraging to you. Last August, a CT revealed an over 13+ cm liver lesion plus multiple lesions everywhere, taking over nearly 70% of my liver. I was shocked and had never been so scared in my life. I started dose dense Taxol and Gemzar. Slowly but surely, the lesions are shrinking. The largest lesion has shrank down 65%. After 8 months, I was able to drop the Gemzar, and am now continuing on weekly Taxol. Chemo has been tough at times, but we are tougher!!! I deal with the side effects, but overall I'm able to live a pretty active life.
Sounds like you both have a good plan moving forward. I'm am praying for you both.
PB
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Grannax2 and Gumdoctor, I sense the urgency and so glad you both will be starting the IV chemo to kill those pieces of shit cancer lesions. Systemic chemo will kill, kill, kill and you will soon be captains of your ships again.
It works. AC killed mine and got me stable.
Thank you for taking time to keep us posted on this very personal part of your life.
Shetlandpony..thinking of you, too.
S
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Grannax... I saw you asking Jaylea about the Gemzar. Both of us did post on a Gemzar thread earlier this spring, so look for it and you'll get some good info from there. My treatment schedule was that I got Taxol/Gemar on week 1 of the cycle, Gemzar only on week 2 of the cycle, and week 3 I had off. On my Gemzar only week, my only side effect was a little bit of nausea every now and then, but nothing so bad I took anything for it. Gemzar is known to be tough on the labs, raising liver enzymes, and especially lowering platelets.
PB
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Pboi..will you eventually stop weekly Taxol and start AI or SERD with a CK4,6 inhibitor. Just curious.
S
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grannax - I was on gem/carbo for ~18 months. It knocked the cancer back and I was NED for much of the time I was on it. and I kept all my hair! I saw your referenced your ponytail, so not sure if you are expecting to lose your hair, but perhaps you won't!
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SandiBeach...honestly I don't know what to do. At my mets diagnosis, I was supposed to start Faslodex/Ibrance, until it was discovered how extensive my liver mets were, and at that point we went straight to IV chemo to gain control. I'm stable now on weekly Taxol and my MO would like me to stay on it until I progress. I scan next Wednesday, so I guess we'll see where we are then.
My MO is open to me trying the hormonals if I'm still stable after my next scans this fall. My liver biopsy at mets diagnosis did show I have the FGFR1 amplification which may make it more likely that the hormonals might not work for me. I'm scared at taking a leap to try something new that might not work for me, especially when Taxol is working. So hard to know how to best proceed ...
PB
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Pboi - Your story is VERY encouraging.
We are leaving now (0545) for port surgery this morning. Probably starting chemo tomorrow...pending insurance...
Thank you for blazing the trail,
Gumdoctor
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Granny and Gumdoctor- I started weekly IV 1-carbo/3/taxol/xgeva for extensive liver, bone and small lung Mets -1/18. Tumors Markers were 1500 starting. Lots of right side liver and shoulder pain. After 6 months of weekly IV they had dropped to 191. My 6 month CT scan showed a 35% reduction which didn’t correlate with my TM but MO felt that the TM were possibly ahead of the scan. My bloodlabs were all back to normal and TM were consistent during this time. I needed several breaks for low blood counts during this time on carbo/taxol. I then asked to switch to ibrance to try get on something that allowed less time away from life/work ect. I started ibrance/femera-June/18. Thankfully TM have dropped 10% each month and labs show nothing alarming. MO feels that TM are realizable at this point and will scan on symptoms and rise in TM.
Anyway, Weekly IV chemo definitely kicked back the cancer growth for me. I was able to maintain relatively normal lifestyle on weekly treatments. I’m very hopeful you gals will see the same regression of tumor 🙏
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Thriving Mama. You didn't lose your hair? That's great. I was going to do the cold cap, a friend offered to pay for it. But if I don't need to that would be so much better.
Pbol did you lose your hair? Anewbreath?
Thanks for these very encouraging words. Mostly I want regression of tumors and all of you got that. I'm so happy for you. Thanks 💞
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