debnorcal
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Julie, No, I have not heard of this. I’ll be thinking of you tomorrow and sending tons of positive thoughts that the test comes back negative for the bad things.
Debbie
Julie,
Wonderful news about success in treating your isolated recurrence. I also hope this bone marrow issue proves to be minor as well. Hang in there, keep taking things one step at a time.
Debbie
Patricia,
Welcome to our board. I’m so glad you joined, as we collectively have much experience to share and can be a great source of support and encouragement. I’m also so glad you connected with Lainy and are close enough to visit. It’s such a special experience to meet someone that has traveled this road. Plus, Lainy is just wonderful!
Regarding your earlier comment about doing the research and wondering how much to share with your hubby, that was how it was with my husband and I as well. Despite Mike being a very capable analyzer of information in his pre-cancer life, I took on the role of chief information officer
. I researched the disease, providers, options for second opinions, treatment modalities. My husband was very stoic and didn’t want to know all the details. He trusted me to find the best options and guide him in that direction. I ignored all the grim statistics and pushed ahead with the next step. I guess my advice is that there is a big difference between worrying and being well informed. Of course I worried, but my primary focus each day was to find the best treatment for my husband and make it happen. Plus providing loving care while he was feeling awful. I also had three teenagers at home and had to remain calm and positive. It wasn’t easy but we got through it. We ultimately found an amazing medical team, at which point we were able to hand the reigns over to them and they found a way to save my husband with a successful resection.It sounds like you are doing a great job as caregiver for your husband. Congratulations on his resection. Please keep us posted on his progress.
Debbie
Jaime,
I am so glad you were able to find a way to get your wife treated at Princess Margaret Hospital. I am in the states, so no experience with the Canadian socialized medicine system, but others on this board have spoken very highly about PM. I am so sorry that, in addition to your wife having this awful disease, she has had to endure such poor medical care. However, as you know, it’s so important to get patients seen by the CC experts, and thankfully, you have made that happen. The PM doctors should be able to guide your wife to the most appropriate treatment. I’m hoping things start looking up for you and your wife.
Debbie
Gavin, I generally agree with your point. Once in a while there is a well informed, researched piece, though.
There was an article titled ” Patient gives back to Doctor” that was printed in WSJ 10/18/16 that I found very inspirational. The patient, perhaps a member of this board (?), is using her talents and connections to raise funds for CC research. I think it also perhaps divides some public awareness.
Debbie
Matt,
Your post brought a tear of happiness to my eyes. I am so very thrilled that you continue to be on a positive trajectory – may it continue indefinitely!
Thanks for taking the time to post updates of your success. You are such an inspiration to so many of us. You sound and look great!
Mike and I are hoping to make it to SLC in February. If so, we’ll see you there.
Debbie
The recovery from ERCP/Spyglass procedure is usually rather minimal. I suggest you contact your doctor and bring this to their attention.
Dear Alicia,
I am so very sorry to read that your mom has passed. My thoughts and prayers are with you at this difficult time.
Debbie
Rick, I would also like to welcome you. I’m sorry you needed to seek us out, but so glad you did. I’m so glad this board has been helpful to you. CC is notoriously difficult to diagnose, and I know how very frustrating tHat can be. Hopefully, your appointment at Princess Margaret and your spyglass procedure will provide more answers.
I’m so glad you’re feeling well and enjoying your usual activities. (You sound like a fairly active guy!). Please continue to keep us updated on your progress. Wishing you all the best.
Debbie
Hi Dennis,
I am so sorry that you have a recurrence. I know how very disappointing that can be. We have several members that have utilized the targeted therapy Keytruda – with excellent results and I hope they chime in and share their experience with you. The good news is that doctors have tools now (like the Keytruda, targeted radiation, etc.) that allow them to treat recurrence as a chronic disease that is managed as issues arise.
Sending healing thoughts to you,
Debbie
Rebecca,
I am sorry that you are dealing with this horrible cancer, but very glad you found us. This discussion board is filled with knowledgeable, compassionate people that can help guide and support you. I agree completely with the advice given above by Marion and Lainy, and I agree with Joe that you are very brave.
I hope you will return to our site for advice, and please keep us posted on your progress.
Debbie
Nancy, I am sorry the trials didn’t have good results for your mom. If Dr. Javie thinks Keytruda may work for your mom, I hope you can find a way to get it for her.
Sending positive thoughts to your mom.
Debbie
Dear NTe and SM, congratulations on your marriage. It sounds like the chapel ceremony was just lovely and very touching for all that were present! So glad to hear that SM is now feeling better. Crossing my fingers for good results from the biopsies!
Debbie
Ben,
Welcome to our special group of caring and knowledgeable members who are brought together by this horrible disease. I hope this forum is of great help to you. I was so glad to read that your mom had a second opinion from UCSF. I live in the Bay Area and know firsthand that UCSF is the best place to be treated in our area. I agree that the chemo can be administered anywhere, but that an expert center is needed to determine whether or not a patient might actually be resectable, as well as best current treatment options.
I wish your mom all the best.
Debbie
