How are people with liver mets doing?
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Grannax- Have fun tonight, girl. Hugs from here.
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Have big fun at that party tonight, Grannax! You have earned every ounce of Christmas cheer!
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Grannax, Happy for you that you finished your second Y90! And best wishes of course, that your mets will be history. Enjoy that party but don’t hesitate to say goodbye if you’ve had enough!
Rosie
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grannax congratulations! You are a great source of inspiration! Enjoy the party!
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Grannax,
Congratulations on your second Y90 this time around! So happy for you that the SEs seem less, and hope you will soon be feeling 100%.
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Grannax -- Hope you were able to have a wonderful time at your Christmas party! So, glad to hear that the y90 was easier this go round.
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Thanks, ladies. I had a wonderful time at the party. It was filled with laughter and grandchildren. Only SE was altered taste buds and no appetite. I did leave a little early. I'll post a pic.
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These are my grandchildren plus my BFF’s grandchildren I have only two. We have and annual party and always get matching jammies for all the grandkids. We’ve been friends for over forty years.
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These are my two.0 -
Absolutely adorable! Loved the coordinated jammies!
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ADORABLE!!! Love the matching jammies!
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love
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JFL, your story really gave me hope. I also have bone and liver mets, neither or which are under control after 5 other types of chemo. Now on eribulin which hasn¨'t been as bad as some of the others. They pack my hands, feet and head in the ice gloves, socks and cap but my hair is coming out pretty fast. Third time I've lost my hair and grown it back. it was actually comical, I was trying to put up a christmas tree and my hair kept getting caught on the branches so my xmas tree looks like it has human hair instead of tinsel. (yuck and disgusting, but I guess you have to see the humor)
Anyhow I am about 2.5 years in as a "lifer" and thrilled to hear that you are 5 and counting. All the comforts of the season to you and your family!!!!!
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Incredibly heartwarming, Grannax!! Thank you for sharing🥰. So happy to read that you are done with Y90 and feeling ok
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it certainly has been a long time since I’ve posted on this thread. I do read the posts daily but have a very hard time keeping up with all your activity, but it’s nice knowing so many have so much hope, grit and support.
I am nearing the end of available treatments, one’s like y90, they’re not offering to me. I’m 5 hours from that treatment clinic and only now have been told I would need to see if I qualify and probably won’t etc etc. My liver metastasis are extensive now but I am looking for a lot of answers and thought it best to be on the thread with most knowledge about my specific need, liver
Grannax,BevJen, Gumdoctor I have followed your stories, for a long time and all others I know a little as well.
Please forgive me in advance for all the questions I may end up having.
Mauree
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Hello All -
Early morning to leave for chemo/clin trial appt now. Will find out in about 2 hrs if they will be able to treat me today because WBCs are good or not. Also will find out if they have a plan for low WBCs in the future.
If not comfortable with their answers, I will probably withdraw from the study.
Gumdoctor
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Good Luck Gumdoctor! May you receive treatment today! May it be potent and efficacious!
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Praying Gumdoctor. Kayla, ask away. It's important to me to be able to encourage others about y90. I'm so sorry you would have to travel five hours to get a consult. Some IR s will look at your scans and lab work without you being there. Maybe you could call one to see if he would do that.
Anewbreath, thank you. I love any chance to share pics of my grandchildren. They are my happy place..Christmas party #2 tomorrow at my house. I got quite a bit done yesterday, just finish up today and work on food.💞
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Last week I got news of progression - another small lesion in my liver and growth in the existing one. I also have a crack in my sternum, so will be getting a short course of rads for that. MO is going a little aggressive with next tx. Xeloda plus Ixempra, which it seems literally nobody on these boards is on. I told her I'd give it a try but won't hesitate to pull the plug if SE's are too much.
Gumdoctor, holding you in prayer today as you get some answers today.
Maureen, also sending up prayers for you, dear friend, as you navigate through this rocky patch.
Wishing everyone moments of peace and joy during the holidays. Hugs from JL
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Jaylea - So surprised and sorry to hear your progression news...I know you are such a survivor and so resilient...prayers and best wishes for you.
I went to treatment appt and was turned away again. ANC was .4 and 1.0 is required for tx in this study. MO did allow me to get Neupogen to take befoee trying once again next Monday. I am much calmer and emotionally numb than I was last Monday. Moving forward...
Thank you for all the kind thoughts, well wishes and prayers from many.
Gumdoctor
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Gumdoctor, you are in my thoughts. Glad you received Neupogen and hope you receive a green light for treatment on Monday.
Jaylea, sorry to hear about your progression. I have heard of others in this forum doing Ixempra occasionally but have never come across anyone doing the combo of Xeloda and XGeva. Must be frustrating to not have anyone to bounce things off if and share info. My MO also prescribes uncommon combos at times. At one point, there was an Ixempra thread although it didn’t have too much activity. What did your MO say about Ixempra and why he/she prescribed it? It is definitely one I have on my list of possibilities in the future.
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jaylea. Progression is a bummer, I totally get it. Maybe this new combo will work, then the rest of us can try it. Gumdoctor great attitude, we are reluctantly learning how to roll with the punches. Hoping for Monday.
My day four post y90 body wore out at 4:00 yesterday. So, I have more than I wanted on my list for this morning. I better get busy! Merry Christmas.🎄💞
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happy holidays.
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Merry Christmas and Happy 3rd day/4th night of Hanukkah!
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Thank you Katy and to you too.
So yesterday i met with my MO and since I am having no side effects on the Xeloda and my blood work was perfect, aside from AST a little high she decided to raise dose from 2000mg a day to 2500mg /day. Still 1 week on 1 off.
I am going to share with you all that I think there is a chance that the med may not be working for me as I have this itchy skin condition that went away when my Ibrance was working and came back when it wasn't (plus I had it for a year and half prior to stage 4 diagnosis) It usually starts on my elbows and last night it started again....not bad but ..yea. I am trying to stay optimistic though.
We also talked about what will be next if it fails. She seems to think I have a lot of options...I told her "I don't see that but....hey...ok sounds good". She said if it does fail it depends on how much progression there is about what we will do next. If there is a lot we will go to a Taxol or Abraxane...if there is a little progression she is going to try to get me in a immonotherapy trial based on me having PDL1 expression....she will only go for that trial if progression is minimal because she said it can take about 4 to 6 weeks to get in so if progression is a lot then we have to slow things down with chemo.
I welcome any prayers and thoughts.
Love to you all.
Nicole
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Hoping everyone is resting and enjoyed the holidays as much as possble.
In the IMMU - 132 study. Have been denied tx 2 weeks in a row due to low ANC. This Monday it was .4. They agreed to let me have filgrastim (Neupogen) this time and hope for the best next Monday. This meas I am into week 3 of no tx.
If delayed again on Monday, I will probably exit the study.
On top of all that, for the 2nd time in 2 months, I was told I have no insurance.
Realize I am an active duty Army Colonel. This should not be happening to me or any Soldier. But it is.
This is how the Army treats Soldiers. Venting. Beyond being surprised at all the things the Army does to me after their malpractice has killed me. Venting.
Gumdoctor
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Gum...I have never in 14 years had that issue with my TRICARE insurance...ever. That stinks it must be the facility you are going to? And I have always only been treated out in town never on base. Sorry you are dealing with that.
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Has nothing to do with where my treatment gets done.
It is because I am in Warrior Transition Battalion. We are considered throwaways because we have zero value to the Army now.
Gumdoctor
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Gumdoctor. That is just wrong, wrong and wrong. Should we all write letters to the President or who else would you suggest? I'm serious, I'd love to do something, to help you and our soldiers. Give me a name and address, I will tell them exactly what I think.
My 15 hours of sleep on Day four really helped. I got everything done except for my makeup. Whoops, and my SIL's parents came one hour early. 😨 But, that's a minor thing. They wanted to see all my remodeling. anyway. All of it was nice and clean. Mission accomplished. Then on to my son's house. I'm still savoring all the moments from Christmas/Birthday with my family. My appetite came back that day, day six, so I had two helpings of everything. Sooo yummy.
Except for having the post y90 swollen right upper abdomen, I've done great. No pain from left lobe y90.
I hope all of you had a Happy day, hopefully with family or friends.💞
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