middlesister1
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Dear Carla,
Welcome! Very happy you decided to come out of the shadows and join the conversation. The results of the scan had to make you happy- we like tumors getting smaller.
I look forward to hearing more from you- I think the first post is the hardest.
Best wishes,
CatherineDear Tracy,
I’m very sorry to hear your sister’s diagnosis, but very glad you found us. I have two sisters and am so fortunate to have them in my life. I agree with your opinion of the doctors and diagnosis. My mother was told a year in Oct 2013 and she is still with us and feeling great. Last week she had a mammogram. Normally, not a source of celebration but early on her ONC told her not to bother since CC would kill her first. They also put her back on routine vitamins. And, she is not the only one you will hear of on this board who are having good success. It’s a lousy disease, but there is hope.
I wish you sister good results from the chemo.
Take care,
CatherineI’ll have to mark the calendar as a day which will make wonderful things happen- a successful surgery and clean scans.
Maribel- best wishes to you and your husband.
Julie- fingers will be crossed. Hopefully scanxiety won’t set in until at least April 1.
Catherine
Dear Elizabeth,
I am so sorry that you lost Peter to this horrible disease and at such a young age. All losses are heartbreaking, but when I see people around my daughter’s age diagnosed, it seems even more unfair.
Thank you for taking the time to share the good and bad of what you went through together. It is a tribute to Peter, and will help many more in the future.
I wish you peace and comfort as time goes by.
Take care of yourself,
CatherinePaul,
Welcome to our group. I’m glad to hear you are getting the second opinion. Although I would like to see less people affected, it is still rare enough that most hospitals are not familiar with it.
Best wishes to you and your wife.
Catherine
Sharon,
I hope they find a new treatment path. Some here have had wonderful results on the Keytruda,
Best wishes hopes that they find a way forward soon.
CatherineDear daughter,
I am sorry your dear father has this diagnosis. My thoughts are with you and Dad-
Take care of yourself,
CatherineHi Kathy,
She was diagnosed at Upper Chesapeake ( Bel Air), then had unsuccessful surgery attempt at UMD. If it was just the ONC, we probably would have gone to Hopkins for a second, but we have been thrilled with the radiologist- I have no doubt Mom is alive today because of him. With all she has going on with Dad now, he said we could wait until August to come back for next scan. He said to consider he cancer dealt with for now. We never envisioned a treatment-free survival for Mom, but we’ll take it for as long as it lasts (I’m still hoping for the cured like surgery results- or fine if not cured but doesn’t grow for 20 years)
Although UMD is huge and has the tumor board, after spending time at Hopkins with Dad for the lung cancer, I did feel like I stepped into a hospital like no other. There were doctors doing rounds at 5am and MRIs at midnight (not a sleeping hospital).
I love when you have time to check in- yours is a story of so much hope too and I love hearing how things are going. I can’t wait for the day when seeing the 5+ year survivors here is the norm.
Take care,
CatherineMelinda,
Thank you for being our shining voice (but I know that does not get us off the hook; we still have to do our part)xoxo
CatherineHi-
Welcome to our group. We were fortunate with Mom in that the local hospital knew they were out of their league and surgery for ICC was scheduled at UMD within 4 weeks of diagnosis (but they are partners with county hospital).
Although a different cancer,Dad was admitted Dec 29 at local hospital,and after a week of testing at local hospital, I reached out to Johns Hopkins. Since the surgeon agreed to take him on, within a day he was transferred by ambulance, with all records,and was having scans the same day (at midnight- Hopkins does not sleep). We did not start over. However, I think it is easier to be transferred if already admitted vs as an out patient.
So sorry you are going through this and thought and prayers are with you,
CatherineDear MMG,
I want to welcome you to our group. I’m so sorry it returned.
Best wishes to you and your husband-
CatherineHi- since this came to the top again for new posts, thought I’d share something I did a few weeks back- hope it’s ok that I shared this topic with “another cancer” (my Dad’s lung cancer), I was correct in that it gave other cancer patients a release as well. Although I didn’t use names or mention CC, I hope Hans doesn’t mind that I spread Kri’s’ love and spirit a little bit wider. For any who want to see how Lung cancer members responded, thread is below.
Catherine
Thanks everyone. It would have been difficult if it came back now; Dad starts his 2nd chemo cycle for lung cancer on Tuesday, so Mom is in the caregiver role. She’s even been driving again so she can take him to the chemo and some of the doctor visits.
We’re still are driving down to Baltimore to see the ONC today (really not sure why- blood work all looked good). I’m not sure if she’ll try and push us off to 6-month scan cycle. She tried that last time, but she said she thought it had been 2 years (it was 1 since SIRT at that time ). SInce Mom never had surgery, I’m not sure if we’ll ever feel comfortable going more than 3 months, but we’ll see what she recommends.
Best to all,
Catherineyeah!!!!
Response from Mom’s IR after reviewing her CT/PET; we meet with ONC tomorrow, but didn’t know if we would need his talents again:
“Actually there’s no reason to see me. I don’t see anything to treat. The liver remains in remission and I do not see anything outside of the liver that is hot.”
Very happy and relieved. And. very nice that we get the good news a day early- he is our hero.
Catherine
