middlesister1
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Hi Victoria,
The only “symptom” was a rise in her CA-19. We never thought it was a good indicator for her since it always stayed high 30s to low 50s, but with the recurrence it was up to 71. Although she didn’t have surgery, we thought we had beat the odds. Once thing we did find, was I would push for a PET scan at least once a year. Mom had a lone growth that was lose to the bowel and very hard to differentiate from it. They also at first with CT missed where it had come back at the original site. She had her CA-19 tested again the surgery to remove the abdominal growth and it was down to 51. Since then, she had 15 proton radiation treatments. We go back April 10 for another scan/blood work and will see how it worked. Mom’s only complaint with the radiation was the fatigue.
Best wishes,
Catherine
Hi Malepi,
I will try to respond to the y90 question ( but I am not a doctor). Mom had the one tumor when DX in Oct 2013( I think 3 x 4 cm). They couldn’t remove, so we did 3 cycles GEM/CIS and then y-90. Although Y-90 shrunk it significantly and there was a lot of dead tissue, we opted 9 months later (stable disease) to do the Y90 again but this time took xeloda 2 weeks before and after to make it more effective. We were actually hopeful that Mom had beat this thing even without surgery; we went 3 years with No Evidence of Disease (NED). It is unfortunately back again, but this time none of the doctors are saying things like “12 months”. Instead they say we are in uncharted territory and we will be staring proton radiation treatments in Feb.
Best wishes,
Catherine
Hi Darragh,
I am so sorry that you won the lottery of having such a rare cancer, and one that is even rarer in someone you age. Although I may be looking into Irish citizenship ( my cousin just received it), I am not familiar with treatment options. I’m hoping some of our international members will step in.
I agree that cancer seems to be the “norm”. My mother has 4 condos on her floor and in 3 people are going through cancer treatments. I don’t know, but are blood samples like Guardant360 being used there? My mother went through gem/cis, Y-90 and now we will be starting proton radiation shortly. However, we also were fortunate to have 3 years of treatment-free living. We’re hoping to get it again. You’re correct that the original 3 cycles of chemo bought us time to look into other treatment options. It was also interesting that when we went yesterday to the proton radiation center of Univ of MD, the concierge told me she has many international patients who come over for treatments.
With Mom, we’re waiting for the Foundation one testing to come back- in Ireland, do you have the possibility for your ONC to try keytruda or other options off-label? And, if by any chance you have situation similar to my mother as DX ( one localized inoperable tumor with no mets), the Y90 gave her wonderful results. Please PM me if you’d like to discuss.
Best wishes,
Catherine
We always love to get updates and see members stop in. Although many have gone over to FB or other media, I think the posts like your are something that even if people don’t respond, will be read by so many. There are many times I have used the search function here and find info that helps. With Mom’s recurrence, I’ve started looking for info on how CC patients are doing with the clinical trials.
Fingers are crossed that next time you check in, it will be to share great results from the Keytruda trial. If you do check in, can you give the number of the new trial and location?
Best wishes,
Catherine
So sorry I’m late in replying- we did a quick one-night trip to Ohio to spend New Year’s Eve with my in laws. Fortunately the heater in the car kept up with the freezing outdoor temperatures.
I wish all here health and happiness in the New Year (Wealth would be very nice too).
Catherine
Mark,
Welcome to our site. I’m very sorry to hear you’ve already had to go through cancer treatments, but it sounds like you are now a well-educated patient. Since CC is so rare, it’s very important to get opinions from a multi-disciplinary team who are familiar with CC, and you have that covered. My mother was DX in Nov. 2013 and also had the unsuccessful surgery. If we could do it over, it would have been easier on her to go straight to chemo/radiation, but until they were in, they thought they’d be able to remove it. At that point, her doctor told us that this disease did not go into remission. However, she did 3 cycles of Gem/Cis and then 2 Y-90 radiation treatments which gave her 3 years of treatment-free life with no evidence of disease (NED). We’re hoping her doctors come up with a plan to put it back into remission.
Let us know how your visit goes today.
Best wishes,
Catherine
Good morning,
So far Medicare has been great for Mom ( she has a supplemental too). We have been told they limit how frequently PET scans or CA-19 blood test can be done, but no major problems. We were also told by the radiologist that her would prefer to do the proton beam radiation but if insurance turns it down, they will use the traditional. He seemed to think Medicare would be fine with approval, but guess we will have to see.
Happy New Year!
Catherine
Thanks Gavin. Mom was discharged today. Not sure how, but we managed to still fit in Christmas dinner and gifts since there are 8 year old nieces in the family. Mom was not able to be at the gathering, but we all saw her at some point during day . We knew putting off surgery so she could travel to my daughter’s graduation might change Christmas celebrations, but all ok with us and her. Different, but still many special memories from this Christmas season. Love to all, Catherine
Tilly,so sorry for the late reply. Mom was only discharged today so I was a bit sleep deprived and sleeping in the hospital for past few days What a wonderful way to end my Christmas day- NED for your husband-YEAH!!!!! Much happiness and hugs heading your way. Catherine
Hi, I’m spending Christmas Eve with Mom in the hospital tonight. It’s been a long few days since surgery on Wed but she is recouping well, just taking a bit longer than we hoped to get all plumbing working again. Great nursing staff and private room with semi-comfy sofa for me. My thoughts are with all here wishing you a very merry Christmas and happy holiday season. Love and hugs, Catherine
Randi,
What a great milestone. And I understand about needing to step back. When my father died in Feb of lung cancer, thinking about Mom’s CC was very hard. I am so happy for You! Wishing you a happy and healthy New Year. Catherine
Hi-
It definitely is an individualized choice. Chemo is different for all. We have members who have been able to continue working while having treatments and others that it is harder on. In general, for someone your age compared to my Mom, it should be better tolerated since you are young. For my mother, the first cycle was very hard and she considered stopping. However, they were able to give her more fluids and steroids to help with nausea, and then she was able to tolerate very well. Her thought was that she could always stop the chemo, but she wanted to at least try . And, we were fortunate that between the chemo and radiation, she had 3 years of very good health.
Take care,
Catherine
Dear Aroha,
In Nov 2013, my mother was told 12 months and if she did chemo, it would add another 3 months. However, after she went through 3 months of chemo, they decided to also do Y-90 radiation treatments. Although her cancer is back now, she had 3 years of treatment free life and we hope to do some more treatments and get her back into remission.
It is VERY important that you get opinions/consults from a cancer center that is familiar with CC . Just in the past 4 years, we have seen very may treatment options available. Although still a rare and horrible disease, many who even if not cured, are living with this more as a chronic disease. Please do not give up hope if there are options. Where are you being treated?
Best wishes,
Catherine
Terrence-
What a great way to start my day! I am so appreciative of you checking in ( sending hugs to Jill too) and sharing your success. My mother is having surgery on the 20th to remove a met and very worried that there will be more lesions once they open her up that were not seen on the scans. Being able to share stories like yours that give hope are so important in addition to us being so very happy for you and your family. If you have time, can you remind us of what mutation you have?
Best wishes,
Catherine
