middlesister1

Dear Alex,
I am so sorry for your loss. I wish I had a way to ease your hearts, but you do have my heartfelt condolences.

More love and hugs,
Catherine

Interesting. Mom had Gem/Cis and a few months later the Y90. The second time Mom had the Y90, they put her on Xeloda two weeks before and after to help make the tumor take up more of the radiation (not a great medical description). At first he ONC wasn’t on board, but her radiologist convinced the ONC that the risks should be low and the gains potentially much better. The first time shrunk the tumor, but after the second Y-90 we had a negative PET and no viable tumor visible ( made us a big fan of her radiologist.) Another scan next week- the CA-19 has us a bit apprehensive, so the scanxiety has set in until we find out results on Aug 7.

I’m not sure how Mom would have done with having both the Gem/Cis and the Y90 at the same time. However, many seem to tolerate the chemo better, so it may be a easier for some. And, Mom also can not take most pain meds, so that is an added challenge. The many treatment-free months has been such a gift. Trip to Mexico booked the end of October, so hoping the great results keep coming. I’m very happy to see this trial and hope many can benefit.

Dear Anne,

Welcome to our group. As Lainy said, please never worry about posts being too long. In the years on this board, I have posted many long posts and even followed up with long emails to various members. We may not have the answers, but we are always here to listen. My mother also had to be closed up when they couldn’t remove the cancer, but so far, she is doing really well (almost two years). She also went through Gem/CIS after the unsuccessful surgery and then had radioactive seed treatment. This week she is at the beach with her grand kids.

If you read the stories of our members, you’ll find many who were diagnosed at different stages and also many going through different treatment courses. Lainy gave you a great starting place on the homepage to find information. It is overwhelming, but we all wish you and your husband the best.

Please let us know how the scan and follow up goes.

Catherine

Hi,

Welcome! Thank you for introducing yourself and sharing your story. Long-term stable although not perfect, is very good to hear. More importantly, I’m glad you’re able to enjoy life. This disease can be a wake up call to many that we should be living and loving more.

Take care and keep in touch,
Catherine

Dear Steve,

Welcome to our group. My mother opted for chemo, and we had great results which then led us to radiation, but the chemo was not easy on her. She was feeling well when she started the chemo, so we did not alleviate symptoms. However, I have read others’ stories here who once on the chemo, start feeling better as the tumors shrink.

It is a personal choice. And, keep in mind you can stop chemo at anytime. Mom’s almost 2 years after DX. so we are very thankful she gave it a try. The first round was the worst and she almost stopped, but then they adjusted her meds and we kept up with the fluids.

We’re here to dump on anytime. I hope things turn around soon and you get to Ireland.

Best wishes,
Catherine

Dear Hope,

I’m sorry to read of your father’s fight with CC.

It is good that you reached out for second (and even third opinions) from some of the best treatment centers around. I understand your worry on having Dad take the long trip without at least an indication that it will not just be to hear in person that there is nothing they could do.

I know with my Mom the doctors always approached chem from a point of looking at could it do more harm or good. This is a very tough cancer and the although the treatment options are improving, there is still so much more that needs to be done. Some of the new drugs are showing promise, but it’s moving too slowly for those who have this disease now.

I’m not a doctor or a patient, so I hope others will chime in. I would not put my parent through the long trip without at least an indication that they had a plan.

I hope some who are being treated at Cleveland can chime in.

Best wishes,
Catherine

Michael,

Welcome to our group! My mother has had Y90 twic (Fen and Nov 2014), and so far the results have been wonderful. I hope when you have your scan, the results are just as great or better.

Keep in touch and let us know.

Catherine

Dear Andy,

When Mom had a hard time with pain and couldn’t take morphine (she gets nausea), they put her on fentanyl patches. Before going on it, I asked colleagues and had a few share that the Fentanyl not only controlled the pain in late-stage cancer for their loved ones (other types of cancer), but also made the patients less drowsy and allowed them to have more quality time.

I agree that you should let the ONC know.

Thoughts are with you and the family,

Catherine