How are people with liver mets doing?
Comments
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Hi Louis, the flowers in the arrangement are Sanguna Salmon Petunias a fairly new variety and the small purple flowers with the yellow star are a new variety of Calibrachoa. They are nicknamed Million Bells. I live in Upstate NY so they are only an annual but in some warmer climates they will act as a perennial. Tomorrow I will send you and KD another variety that is as beautiful as both of you. I hope today was manageable for you and your family.
Thinking of all of you,
Anita
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Louis how cute are these kidos!!!! Oh you must be so proud. You are doing everything so perfect. A real heart brake!!! KD is giving you an offering of peace. What a special lady!!
Peace be with you.
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Stagefree,
Thank you for all of the information. I am doing exactly what you said. Everything makes sense. Thank you for taking the time for me. Sometimes the MO doesn't tell you all of this. I am hoping this works. I really don't feel sick from the Xeloda but just a little sleepy. I hope I get a good run like you. Thank you again Ebru. That is a nice name BTW.
Hugs to you and many thanks again,
Anita
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Louis and KD, I'm sending you some fresh virtual flowers. Hope today is a good day for all of you! Warm wishes to all of you!!! I took these pictures to make this card for you yesterday. I'm so lucky to be around the beauty of nature everyday, it keeps my mind off of the bad things always lurking in the back of my mind. Have a good day.
Warm wishes to you and your family!
Anita
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Hi ladies and gentlemen, I'm happy to see that some of you are doing well, with some improvements and I'm also broken to see that others are not so well unfortunately.
I don't write a lot but sure I check in everyday and I send good vibes to everyone in need.
Forgive me but since I have met in my lungs, liver and bones I will I'll be repeating in the other threads.
In April we went to Denver and we had a good time, my kids got to ski. I didn't do much just hanging around and watch Tv, eat and we went to basketball game, baseball game, etc.
In the ski resort things didn't go so well as a I have mets in my lung and couldn't real walk a normal pace, we went to dinner and I threw up right there at the table.
When we got back to Costa Rica, it was time for another CTscan. When the RO and MO looked at the images they were really scared. I had fluid not only in my right lung but l also had in my heart. I hade to be admitted and have all the fluid drained. They left a drain in my hurt and in my lung. The drain in my lung had to be drained every day but the one in heart drained itself and once it was dried they removed.
I was sent back home and put on a new treatment (Gemzar combined with Abraxane). I've had only one infusion and was not so bad but the next day I started feeling pain alll over my lungs as if someone was punching me.
Now the MO wants me to have oxygen in the house but I'm so keen because I don't want to scare my kids.
On Friday I was admitted again as I had cough and and I was very tired. I've been in oxygen for the past 3 days that I have been here in the hospital. I feel better but I go home today and I'm scared. The MO thinks that I get panic attacks.
My only hope is that this new combo works wonders.
Take care everyone and let's all hand in there.
Aziza
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Wishing you all a good Sunday!
KD - you continue to be on my mind of course. Sending prayers, love and strength.
Aziza - I'm just so sorry for all you're going through. I hope you get home safe and sound and feel comfortable there while your tx works wonders.
I'm feeling better after my first Taxol last week. Last couple of days were good in terms of energy so I guess it just takes some getting used to for me.
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Aziz - It's aweseome that you got on the plane and had a family holiday. Hugs and prayers as you figure out what is going on and how to control it.
>Z<
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Ziz that's very scary. Go for the oxygen, it's better for you to be safe at home, it's more scary maybe for the kids to see you hyperventilate.
Waiting on the plan to start, biopsies, trial doctors appointemnts, rads, onco, we cannot make any plans, it's all around where we gonna be when. And so it goes.
Onco is really banking on this AR business, it won't be the first time we banked, D is not impressed, I hope there is something to it.
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Mom - It's sufficiently different so it is a reasonable but any chemo choice done without chemo sensitivity testingevery is a low odds bet at this point. I see it as reasonable choice while we work on ways to improve Dani's odds for the NEXT treatment.
>Z<
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Thx Z, i sent info to Onco, now I have to wait to organize the biopsy with what they want to do.
I AM SO MAD, i need to be nailed down to calm down. D called Sloan to set up appointment with docs that have ideas for trials she could maybe segway when it will be needed. The secretary told her that being that she saw someone there, yes, she did for consultation, HE has to kinda release her, give permission that she could see someone else.
KID YOU NOT!!!! last i checked this was the USA, not North Korea. The doc she saw does not do these trials, Her present Onco looked and looked to find the most appropriate docs for her type of trial, each one of them have a different expertise. She called them, they are waiting for D's call. WHAT'S the matter with these people?? Secr, said yes it's very political..And it want's even a matter of conflict, he knew we were seeing someone else, he even deferred opinion BECAUSE she was with someone else in a different center!! Don't even get me started on THAT!!!> it's another set of horror stories.
Of course we could call and of course he's gonna say it's ok, he does not do these trials, BUT the idea, that you cannot choose the doctor you want to see because another doctor saw you in a 2000 doctor place? You have to click with first doctor? Or and all other reasons you would see a doctor in the same Center. We are not even talking of small rural community center, it's too much.
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Louis,
My heart breaks for you as I read your post. As someone who just lost her wife on 4/28/17, I have no words of wisdom but rather words of experience. I understand all too well how our lives become so much about cancer, especially when we are the caretaker. Try, as best you can, to not focus on the cancer, but rather on your wife's life and the life you two made together. Cherish each moment, talk with her when she is coherent and hold her hand when she cannot speak. Tell her how much you love her every chance you can, even when she is sleeping. Sit quietly when she is sleeping and reflect on the beautiful memories you have together. Hold her as long as you want to and kiss her to let her know that you are there. Prayers to you, your princess and your children that you find the strength to continue your fight and the ability to find comfort in each other.
Much love...
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Thinking about you and your family today Louis.
Amy
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wifeofwarrior - you brought tears to my eyes. lovely advice for Louis.
Louis - you and KD (and your boys) are in my thoughts. You are a Prince. Don't every think otherwise.
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Mom - I would probably setup that policy in my office if I were an oncologist. It gets too confusing to coordinate care for someone when there is more than one calling the shots. Wastes time which effects everyone. Sounds like you are not getting a second opinion, you are actually switching the decisionmaker on her care. There should only be one, at the end of the day, and if the new doctor's policy is to be 100% sure that is clear I am not sure it is a bad idea.
This is coming from some who is actively consulting about 4 different docs a this time... getting advice is one thing ... writing prescriptions and orders for diagnostics is another.
hugs and peace. it is crazy.
Thinking of you Louis ...
>Z<
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He is not D's doctor. He knows that. In essence he told us to stick to our Onco. Actually he was suppose to give an opinion but he said he was gonna contact us but was not available.
Maybe I did not explain well.
She is under care at a different center with her current ONco, this Onco was in touch with two young researchers at the other center, Sloan, and when we called to set up an appointment,due to medical records, which feels quite invasive I must tell you, they could see that she "visited" a doc there two years ago, (not even a tylenol was prescribed), therefore she has to get that consulting doctor to ok release of her.
Visiting a doctor for a consultation does not make him your owner. Just saying.
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Mom - Then I agree, that is beyond ridiculous ... from the response she gave you I assumed you were switching lead oncologists ...
>Z<
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I sent an email to NIH we shall see if they will answer. And I called Wiesenthal. Now, for every chemo they try they charge $2500.00 it could go up to 8800.00, they will need to share tissue with the biopsy that will be hopefully done to check on PDL1 for the immunotherapy in the future.I asked her to give me concrete numbers of success, she said she cannot, because doctors don't cooperate with them, and therefore they don't get much feedback. Hmmm that was a little shocking, because they have been around a while. So that's gonna be quite a call. Some of the problem is that even if it works on a certain cell in the petri dish it may not necessarily work on the person.
Z thanks, let's see how we gonna iron this out. We sent Onco an email to let her know, we'll see what she comes back with. She knows him by first name, so...
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Louise, My heart aches for you, KD and your adorable boys. I am still holding out for a rebound..... but if not you are one amazing DH, you are what made this nightmare bearable for KD. wifeofwarrior had some wonderful words to live by. Wife of warrior, I am so very sorry for your loss. Thank you for taking the time to give comfort during your own grieving.
Mom, that is a pretty scary scenario. I get Z's point also, but sometimes it seems like we get stripped of any ounce of privacy, dignity or choice. Outrageous.
ziz, what an awful moment at dinner....Nothing worse than suddenly feeling nauseous in a public place especially a restaurant. It happened too me this weekend in Vegas. Last day there I woke up not feeling so great. We went to an outdoor cafe by the pool. I ate some oatmeal and it just escalated until I finally had to excuse myself and just made it to the restroom. I have no idea what caused it, vitamins and antibiotics on an empty stomach? Too much weekend? It was scary. You are going through hell and I will have you on my mind as you start the new meds and oxygen. Hoping you feel 100% better very soon . The flowers are in an old western wagon on the downtown street in my previous town.
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MY PRINCESS IS CANCER FREE!!!!
At 8:00 pm this evening, my Princess departed from her cancer-ridden body and entered into the arms of our Savior. Heaven has a New Angel indeed.
By Gods grace, she spent the last week of her life completely pain free. After beginning Hospice around noon on Friday, then having "the talk" with our boys that afternoon, she allowed herself to gracefully slip gently from this life into eternity. We spent the weekend having tons of family and beloved friends stop by to tell her "Goodbye". There were plenty of tears, but five times as much laughter as story after story was shared. Our only regret was that she was not conscious to share some of her favorites and laugh at the rest. We are already planning a grand life celebration for the Saturday after next. It is nice to have the extra time to fully plan for it. I was so proud of my two young men this weekend. They are sad for themselves, but happy that their mom is finally cured of cancer and at home in heaven where she will be watching over them. O death, where is your victory? O death, where is your sting?
My sincere thanks to all of you for your thoughts and prayers for us throughout my time here. I have learned so much from you amazing women. Y'all helped to give me the strength to face each new day, each new challenge every step of the day. My prayers continue for each and every one of you and your families. This I promise. Here is a favorite prayer that KD loved called "The Gift of Life":Lord, teach me not to hold on to life too tightly. Teach me to take it as a gift. To enjoy it, to cherish it while I have it, but to let go gracefully and thankfully when the time comes. The gift is great, but the Giver is greater still. You are the Giver and in You is a life that never ends.
Peaceful rest to each of you,Louis0 -
I'm so sorry, Louis. I have no great words to soften such an enourmous loss. May Princess KDs memory always be a blessing to you and to your children.
Stefanie
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Louis, My heart goes out to you and your family. No more suffering just hold on to the wonderful memories you all shared. We are all here for you. I am so sorry. You made KD's life much easier with all the love you gave her. I am sure she lived and laughed and loved and now she has left free from pain and suffering. RIP KD.
Love,
Anita
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Louis, here is a flower I took, I was going to send it to you and KD. Another virtual flower in memory of KD. God bless you and your family. Anita
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Sorry for your loss Louis.
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Louis, I'm so sorry for your loss. Praying for you and your boys
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Louis, you worked hard and heroic to give it all to KD. She is one lucky lady to be so loved. So sorry for your loss. I was constantly checking to see if you checked in, I didn't want to interfere in your private moments. I am sure you with the boys will make a celebration of her life. Keep that warm spirit.
Thanks for being there for us.
Peace be with you.
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Louis~ No words could express, she is loved and definitely a new beautiful angel. Your family is in my prayers and thoughts. You have been her rock, and your family and boys are her soul. She dances pain free now in a place where cancer has no power. The power may you always feel is love. God bless you and your special sweet boys. May you find the strength you need in those special sons, every time you look at them. You're a strong man and father.... and of course husband. ~M~
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Louis,
thinking of you and your boys right now, love and prayers being sent.
Alissa
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Louis, I am so very sorry to hear of your wife's passing. You both fought valiantly against some very bad luck. Your love for her was the best comfort!
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No words, Louis. Just hugs.
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Louis, I am sorry for you loss. You have so many loving, joyful memories of your dear Princess. KD is at peace now, and cancer cannot reach out to touch her. I am glad that you and your family had those last precious days together. Your love and devotion to KD touched me deeply. You and your beautiful boys remain in my prayers. I wish you peace and comfort.
Lynne.
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