willow
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Thanks, Marion . Nice to see this new webinar. I’m very interested to see how well proton therapy works against CC!
That’s wonderful news, Dorien!!!!! Keep on trucking in that direction and you never know how far your husband can go in turning this CC around and keeping it at bay!
WillowA huge congratulations on this oppirtunity for a liver! sending you lots and lots of peace to get through this waiting period. You’ve been so patient for so long, Tiff!
WillowHello All, I just want to add my prayers and support to all of you just starting out with this crazy ride. Thought its horrible at any stage of life, I especially have deep reserves of compassion for you with young children (like my sister). It’s so hard to stay “normal” and upbeat and patient with the kids when you’re in this extremely stressful time. Like many have said in the last on this site, it does get easier to manage (the anxiety I mean) when a plan is in place.
Peace, WillowThat’s great to hear! And to Jason, best to you as you start GTX! I asked my sis to ask her onc about it tomorrow as an alternative to just Xeloda by itself.
Hang in there…Hi Holly!
im keeping you in my thoughts for more energy! and for restorative rest! what chemo are u on now? your treatment path and complications seem similar to my sis in that low platelets tend to block her from getting chemo. And shes had y90. And back on new chemo now. My sister had gem cis last fall, y90 in early Jan and just started back on chemo (Xeloda) 3 weeks ago. The onc nurses kept telling her her platelet counts were too low to the start xeloda (even though she had t had chemo in 5 months and never finished that cycle of gem-cis). Her oncogist overrode the protocol about low platelets and had her start the xeloda anyway. She gets night sweats where her sheet and T-shirt gets soaked and she fatigues easily but i don’t think she is having fevers. Fevers can definitely make you feel tired! Take care, Holly and let us know what your onc says about it. Glad all blood work looks good!
WillowLisa, happy about your blood work and cancer markers but still really puzzled that your hives haven’t resolved! Could it be from the radiation or from the dye they put in your system? Seems whatever it is causing them, you’re still getti v exposed to somehow!
I used to react like that to solvents and bleach fumes. I’m pulling for you and dont mind if i call you names like a “raging itch”!! My husband used to call me his ” little itch” because I LOVE having my back scratched. Now I bribe the kids to scratch it!Crissie,
Your emotions (and your Dads) will run the gamut! It DOES seem so cruel and unfair to get this unpredictable disease! Who will be your Dads primary caregiver? I would recommend spending as much time as possible with him, whether he’s sick or feeling good. Your husband and friends will step up if you need them to. It’s worth it. I’ve been cari g for my elderly Dad (who passed last week from Alzheimer’s ) and many of my 5 my sibs put off coming to see him. I cut back on my job, often had to leave my girls and enlisted support from friends and of course my husband so I could care for Dad. I don’t regret it ( though everybody sacrificed). It’s my sister who has CC and now that our Dad has passed, I’m hoping to get to spend more time with her and her family. She lives 2 hours away. Initially, its helpful for a family member to attend dr appts to take notes and help your dad remember which questions to ask. Also, not sure who your Dad will select to manage but be sure your dad has a power of attorney (both financial and medical), a trust or will and a medical directive (advance directive to physicians or a POLST) set up. If you cant get away, calls, cards and and email him often to simply let him know you are thinking of him. As Lainey often says ” once a treatment an is established , fright turns to fight”!
And several became operable after being told they were not. Sometimes chemo is why tumors shrank/died enough to allow resection . Sometimes lymph nodes will react to chemo differently than the “main” tumors. Also, there are many mutations of CC, so some get their tumor biopsy samples sent out to find out which mutation it is and this can sometimes be used to eliminate specific chemo agents they know DON’T work on that specific mutation. Ok, too much info overload!
Jason,
Im on here almost daily to get info, support and ideas for my sister (who is too afraid to read these blogs for fear of scary stories). it is reassuring to see many many members managing to live very full, wonderful lives even with this horrible disease. it seems to be episodic for many who view and treat it like a chronic condition and get aggressive when it “acts up” but then have long periods of calm/stability or better! read Tiffany’s story! and Cathy’s! No one tx seems to fit all. It certainly can’t hurt to send all your records to different CC specialists in be US, even while you start chemo. If they decided to do rad or surgery for example, they would have you stop the chemo for a couple weeks till its out of your system and then proceed. That’s what they did w my sister (who also has a young son)…. She did gem/Cis then Y-90 radioembolization and now on Xeloda (a pill form of chemo). She is also stage 4 and was diag almost a year ago. She is doing ok but fatigues easily and had trouble keeping platelet counts at a healthy level while on gem-Cis. Anyway, sounds like you are in good hands but definitely send your complete records off for more opinions!
Sincerely, WillowAmazing, Lisa!!! That made my day! You’re a gracious, beautiful soul and I’m glad You can have some peace of mind and body now.
Willow
