middlesister1
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Thank you all my dear CC friends and advocates for your condolences. We know that so much good has been many accomplishments have been completed over the past 6 years, but there is still so much more to do, Although Facebook is now much more popular, this discussion board was so critical in giving me information to be an advocate for my mother.Being able to reach out to Marion, Lainey, Melinda, Matt, Mary, and Gavin ( and countless others) gave us strength. I was also able to search out those who survived w/o surgery and see how they achieved it. I’m sorry that when Dad died close to 3 years back, I had to fall back om communicating and focus on trying to support Mom and I wasn’t emotionally strong enough to follow the board.
My love and hugs are with all.
Catherine
Hi Jonathan,
I just wanted to share that my mother had the y-90 treatment in Feb 2014. After it’s done, they still may say the tumor is still “there”, but hopefully the radiation will do the trick and what is there is no longer active. For my mother, although the Y-90 shrunk her tumor significantly, we had the procedure done a second time in Nov 2014. The thought was to attack it again while it was down. And, the second time around, she took xeloda before and after to help with the effectiveness. After those 2 y-90 treatments, we had 3 years of treatment-free living. I hope the Y-90 gives you as much or more success.
Best wishes,
catherine
Hi Ken-
I’m still getting used to the newer board format- but I loved having it come up at 2011 and then seeing your 2018 post. My mother is a few weeks shy of her 5 year DX, so there are long-term survivors. Her surgery was unsuccessful in 2013 ( just closed her back up), but chemo and 2 Y-90 treatments gave her 2.5 years of treatment-free living. We thought we might have had a “cure” without surgery, but it did return in July 2017. This time, she did proton radiation- she finished up with that in Feb, and now we’re back to the scans and bloodwork every 4 months. If we can’t sure it, we’re just hoping for lengthy treatment-free periods so she can enjoy life. Earlier this summer she went with us for 2 weeks to Ireland- this is not something we envisioned possible back in 2013 when they closed her back up.
I wish you the continued success- in addition to the 7.5 years, the quality of life is so important too. I am happy you are treatment-free and continue to be so long into the future-
Catherine
Hi Pooh,
If you are with a doctor who is experienced with CC and they are able to operate, I would also feel ok with not getting a second opinion. As Mary said, over the years we have seen many getting multiple opinions in the hope of surgery or alternative treatments, who are alive today because they found a skilled surgeon who could perform the surgery. Yourre already there.
Best wishes for a successful surgery-
Catherine
Good morning,
What great news. Thank you for sharing- it gives hope to others. And, we love sharing in your happiness. You went through so much to get here, and we look forward to hearing the positive reports in the future-
Take care,
Catherine
Dear Kim,
I am very sorry. My condolences are with you and your son. When Dad died a year ago, the last few days were very rough, and I still have days that I wish we could have done more to make him comfortable. I heard something yesterday which gave me a bit of comfort now over a year later, and in the future I hope it will for you too- “remember how he lived, not how he died “.
Take care of yourself,
Catherine
Dear Kim,
I’m very sorry to hear your updates and hope they get him home soon. One thing you mentioned in a recent post that I’m sure Rich knows is not the case- by there being no treatment options or deciding that it’s time to go for quality of life, does not mean you are giving up on or don’t want him. There is nothing you could have done differently. It’s because you love and care so deeply, that we doubt ourselves. My thoughts and prayers are with you and your family.
Catherine
Dear Kellykanapaux,
I’m very sorry to hear of your wife’s diagnosis. It is scary and takes a while to feel that you can get a grip on how to proceed. It sounds like you’ve covered the important things ( making sure you see a doctor/center who are knowledgeable about CC). Getting to surgery is the goal, but please know that just over the past few years we are seeing improvements in treatment options and survival even if surgery is not possible. My mother was given a prognosis of one year in 2013 and she will be coming on vacation to Ireland with us in July.
For quite a few patients, steroids and getting extra IV fluids helpstremendously with the nausea. Mom went from not being able to eat and wanting to give up to not even needing the nausea meds during her second cycle. If not already part of her plan, ask about dexamethasone.
Best wishes,
Catherine
Dear Victoria,
I’m so very sorry it’s back. I know it’s hard to think of anything good at this point, but I was encouraged to read that his recurrence is localized in the liver and the rest of the scan was clear. I hope the Foundation One ( or a targeted treatment) gives you a path ahead to get it back into remission.
Take care,
Catherine
Dear Jeff and Jennifer,
I am so sorry for the losses your families have suffered. Although strides are being made for this lousy disease, they are too slow and not enough to help those who are fighting today. We lost Dad to cancer on 2017 and what still helps me on bad days is realizing that our grief is so hard because we loved him so much.
My heartfelt condolences are with you,
Catherine
Dear Redbearny,
I’m sorry for the late welcome- I haven’t been on the board much lately. It sounds like you have a good treatment plan moving forward- and ideally surgery will be in you future. As we learn with this disease since it is so rare, we have to at times be our own advocates and learn as much as we can. Going to a general oncologist vs one who is familiar with CC can affect survival. And, like you, my Mom’s CC was caught by her GP being very thorough and following up on liver number which were slightly elevated.
Since my mother was diagnosed in 2013 there are many more treatment options. She was given 12 months to live in Nov 2013 and we just returned from a resort in FL where we all went for what we thought was her “last hurrah” in spring of 2014. She had chemo, Y-90- went into remission for a coupe of years, and recently finished up proton radiation. Although surgery is the hope, targeted treatment can give great results too if the cancer is localized.
Best wishes,
Catherine
Hi-
Very happy to hear that the bone pain was not a symptom of spreading ( but hope they get all pain under control). I hope with spring here, it is the start of not only great weather ( keep 90 degrees away for a bit), but that Rich responds well to treatments and you can savor the season.
Take care,
Catherine
Dear Caryall,
Please accept my condolences on the loss of your husband John. Although he far surpassed the original prognosis, and you had more time than at first told, it still doesn’t diminish your loss. I am so very sorry that your family has been touched by this disease, but hearing how courageously he fought and how much living you filled into your time together speaks to the relationship you had . The camping sounds amazing. I hope in time, those precious memories will give you comfort.
Love and hugs,
Catherine
Dear Shellsbell,
I am s very sorry that your family has been faced with this disease. It seems so unfair when someone so young gets DX, but your son’s age should make the treatments more tolerable than if he was older. My mother was given a prognosis of 12 months, and that was in 2013 when they told us she was inoperable. Since then, we have been through so much and we want to have her with us for many more years. There is hope.
Hugs to you and your family,
Catherine
Dear Katherine,
Happy surgiversary! Milestones can mean so much. One thing very different from when Mom was first DX in 2013 and her recurrence, is that the doctors are not giving her a dire prognosis. Our hope is to put it back into remission and enjoy living. Ideally, it stays under control long enough to give treatments options time to improve even more.
Best of luck- keep the good news coming,
Catherine
