Re: New member -- Wife recently diagnosed with ICC

Jason, I am so terribly sorry to read of Andrea's bumpy ride. I am hoping the Folfiri works and that the side effects lessen for her.  You never know how strong you are until "strong" is the only choice you have! I know how hard it is to watch our loved ones go through this but you are doing all the right things. If the shoulder pain lessened I hope it is a good sign the Chemo is working. Best wishes to you both!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member -- Wife recently diagnosed with ICC

Hi Jason,

Thanks for the update on Andrea and I am real sorry to hear that things are not going so well right now. From what you say, Yes Andrea has been on the down part of the rollercoaster ride fot too long now and I am so hoping that it is time for the ride to move upwards again! My fingers are crossed that the chemo is indeed causing shrinkage and that is why the shoulder pain is lessening for Andrea.

It's a tough spot that you both are in right now but do not give up hope. You know that we are all here for you and are cheering for Andrea too. Loads of positive thoughts heading you guys way from over the pond.

My very best to you and Andrea,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member -- Wife recently diagnosed with ICC

Dear Jason,

You, Andrea and your boys have been in my thoughts and prayers daily. While I do not know what it is like to walk a spouse through cancer treatment, I do understand how difficult it is to keep a brave face and positive attitude going  with devastating new developments like the referred pain, side effects of pain meds and now the malignant ascites.  I can't put into words the PROFOUND  desire to take your beautiful wife's suffering away but I do understand that feeling as I had that kind of love for my sister, Nicole.  You are a beautiful example of a husband and father.  From the beginning, you have provided Andrea with what she needs the most: love,  physical comfort and emotional support (as well as logistical support).  It must have been very difficult to attend my sisters memorial but you and Andrea gave of yourself and came.
This is just another example of your selfless love of Andrea.  Our family sure appreciated your presence as well.
Your sound treatment decisions made together with Andrea and based on extensive, research help not only Andrea but all those in the CC family because you chose to share them here.  Yet, as I understand all too well, the challenge with limited options make it feel sometimes like you are flying by the seat of your pants and managing things literally one day at a time.  I know I am "preaching to the choir" with all this but really just want you to know you are not alone. I'm hoping the current chemo will knock the cc down and with that reduce the ascites. Is Andrea on a diuretic?  (Those can have side effects like dehydration/electrolyte imbalance) but sometimes helpful. Also, I pray the genetic testing  can provide more tx options soon. Are you looking at the PDL immunotherapy trial at UCSF?  Please feel free to call if you want to ask about it or any other questions.

Sara

Willow

Re: New member -- Wife recently diagnosed with ICC

Jason,
So sorry to hear about the recent challenges that Andrea is facing.  Hopefully the folfirinox will help.  My wife Lisa had a robust response to folfirinox after her tumors progressed on gem-cis.  Her response to folfirinox was so great that she was able to have a resection back in January.  The surgical pathology report indicated that her largest mass (originally 15cm) was 70 percent necrotic due to the success of the neoadjuvant chemotherapy.  I just wanted to share our experience to let you know that there is hope.  Folfirinox is a very rough treatment protocol that is not easy to endure, but it also has had a dramatic treatment impact for many ICC patients.

I hope that Andrea gets some relief from the ascites very soon and that the roller coaster can begin to gain some upward momentum.  Your family continues to be in our thoughts and prayers.

-Matt

Re: New member -- Wife recently diagnosed with ICC

Hi Matt and Lisa! Just want to say how good it is to see you again and to hear the wonderful news about Lisa. You are one dynamic duo and keep up the great work. Thanks a ton for giving hope to others!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.