willow
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Tiffany,
I am full of joy at your post and how well everything has gone with your transplant. May God continue to bless you!
WillowThat is very very good news! We’re here for you, Tiffany, and praying for a smooth recovery and renewed health.
WillowDear Rena,
I too would like to send comfort and condolences on the loss of your dear father. May God wrap his arms around you and your family to help you through this difficult time.
Sincerely,
WillowHi Lisa,
I am sorry I don’t have any ideas but know I care and can kind of relate as I’ve had huge reactions quite a few times in my life to solvents, bleach, fiberglass insulation and am generally sensitive/allergic to many things, including most sunscreen. Cant imagine whats going on with you! (BTW did you try changing laundry detergents?).I would never give up on you and your goal of good health and physical comfort !
WillowDenise
You are not alone. We are here for you as you navigate unknown territory. Being a nurse can help since you have a good medical knowledge base but can also be scary. You are one of the “lucky” (yeah, right, if having CC can be considered “lucky”) who caught it early and qualifies for resection. Never thought Id be happy for someone to have liver surgery but I happy for you to have that opportunity. On another topic, we are noticing a trend of increasing incidence of CC (Intrahepatic mainly ) and in younger people. I’m determined to find out why by supporting research into this mystery.
Hang in there and know it will get easier once you’re into treatment.
WillowThis is promising. Where are large scale studies? Why isn’t immunotherapy being used more in CC? It certainly worked to “cure” my mothers bladder cancer (though a different type of immunotherapy). Turning on outlet own defense system to destroy cancer and leave healthy cells alone is what all therapies are striving for and this is exciting.
Suz,
That is such a difficult situation… I can relate as my sister was turned away from chemo many times for the same reason. Wondering why onc doesn’t change to a different chemo drug. Something not as hard on the blood cells. Xeloda is what my sister is on now and its easier on the platelets. Many do a bimbo of Xeloda with another chemo drug.
Please let us know what the Dr says and which approach you’re taking. Sincerely, WillowMlayton,
Im from northern CA and my sister, age 50 has ICC diag Aug ’12. She sleo has a you g boy (9). My advice is to go for aggressive tx that can lead to possibility of resection. That window of opportunity is hard to find, though not impossible. Usually the dictirs start with systemic Gem Cis but I like the idea of a combo of regional chemo and systemic. Seems while theyre focusing regionally, microscopic seed cells can be metastasizing, so systemic chemo can help control that. My sister had Gem-Cis chemo, radioembolization with yittrium 90 and now a different chemo (Xeloda). What works for one may not for another person and even different tumors within same person can respond differently to treatments. It sounds like you’re leaving no stone unturned and getting lots of professional opinions, which is great. You’re a very good advocate for your wife and a loving husband. I’m shocked at the younger ages of so many diagnosed since I’ve been on this board. The history on CC reports that its more of a cancer that strikes people over 60, so I’m really frustrated to know that ICC incidence is increasing .what’s causing this?…edpecially in those w no known risk factors. I’m digressing. My heart goes out to you as you navigate this nightmare while raising such young children. Please know you’re not alone and there is hope.
Sincerely, WillowI’m so sorry for you and your Mom. It is difficult to cope when your Mom doesn’t want to discuss her feelings or her condition. Please don’t second guess your decisions. We did that for a while and its a waste of energy and time. Most cases are inoperable by the time of diagnosis and even when scan shows its “borderline”, the surgeons often find its not during surgery. My sisters tumor also had invaded the portal vein and they code to do chemo first , but all doors to surgery were shut quickly due to growth there. Anyhow, we have adjusted our minds to try to take one day at a time and find joy in every day we can. Take care, Willow
My sister had whole liver treated w y90 at Stanford in Jan and did great. Her liver is functioning well. First we thought they were going do do the two halves separately. (Both hemispheres.) Also she had to have to the preliminary surgery to “map” and “coil” (block off alt routes to keep y90 in place). So having only 2 surgeries instead of 3 has its pluses (one being less gen anesthesia). Only one case but thought Id chime in. Willow
Jason,
Very glad to hear your wife is responding to the gem Cis chemo.thats great! My sister (also tx atStanford) started w that, had radioembo and is now on Xeloda (pill form of chemo, easier on platelets and convenient to take at home), 2 weeks on, one off. The radioembo seems to have had an effect on stabilizing or slightly shrinking the tumors it targeted within the liver. without a PET, its hard to tell if theyre dead. she has snother CT next week. Pams dsughter Lauren had radioembo and the couldnt tell till they did surgery that the tumors were completely dead. meanwhile, my sister does niot seem to have any negative effects from the procedure. only problem is that mets had come up in ither places in the time she was either attempting gem cis (bloid counts prevented many infusions) and the months off chemo for clearing it out of system to do the y-90/radioembo.
Who is your wife’s oncologist?
Take care, WillowTiff,
Thanks for the update! Hang in there and I hope things fall into place for both of you very soon.
XO. WillowThanks, Gavin! This really is good news…big $ for ongoing research in figuring out the early stage process of CC (how normal bike duct cell becomes malignant) and the another study to improve palliative care, that one with a focus on communication.
Keep it coming, Gavin. This brings much needed hope and encouragement!
