Roll Call For UPSC only

TeddyandBears_Mom

libby.sparks said:

the visit at Yale was

the visit at Yale was helpful. I learned about tumor genetic characterization, personalized circulating tumor DNA (ctDNA), whereby a blood test is developed for the individual person based on the DNA shed from the tumor. The rise in ctDNA precedes a rise in CA125 by 6 months; and CT evidence of tumor recurrence by 7 months. Furthermore, personalized treatment plan is constructed based on the individual patient's tumor genetics. The genetic survey looks at every protein encoding segment of 312 known oncogenes for genetic mutations. Each person's tumor has it's own unique "signature". My tumor genetic results are pending. I will go back for a visit with Dr Santin at 3 month intervals for now.  

I was disappointed that we did not discuss diet, fasting, exercise. As I understand from recent reading, maintaining low blood sugar "starves" the cancer and helps keep it in check. Sweating has also been reported as helpful; 30 minutes of moderate exercise daily should be good. I have read that fasting is. The fasting regimen could be flexible, for example 16-18 hours (no food from 6 PM to 8 or 10 AM) or restricting caloric intake every other day to 500 calories. 

There is so much new information to take in and process, eh? I suspect that most of us with USPC would grab onto any strategy that could avoid recurrence. 

Thanks!

Sounds so promising for the future. Hopefully, huge strides forward in our lifetimes!

Thanks for sharing.

 

Deidre297

Delia1969 said:

Hi Deirdre ❤️

Hi Deirdre,

 

ive just read of your recurrence, and I wanted to tell you I'm sorry for what you're going through, and ask how you are doing. Are you still in treatment?

what kind of chemo did they give you this time? Carbotaxil again? 

i took cannabis (edibles & vaping) during my chemo, & never had nausea. Fortunate to be in California. Maybe you can get some where you are?

I hope the treatment has been effective. My heart goes out to you, and I wish you strength and healing.

❤️ 

Delia

 

Thank You!

Thank You Delia for your kind wishes and suggestions. Thanks to everyone for the many ways that you support and encourage others as they go through this new way of living. Two weeks ago, I had the sixth treatment with Carboplatin and Doxil. After experiencing severe back and neck pain on the fifth Neulasta shot, I declined the sixth. Tomorrow, I'll have a CT Scan done. My CA125 had dropped from 83 when I had the PleureX drainage put in  to a low of 12 on the fifth treatment. It had climbed 3 points to 15 as I was tested prior to the sixth treatment. So, it seems the tentative treatment appointment on March 30th. could be the start of a third round of six treatments. I had had the PleureX removed after a month but still experience some discomfort when I sneeze. I was able to control nausea which I experienced for a few days after treatment by sucking on small pieces of ginger. One GasX pill ended the most persistent bout of nausea. I have been fortunate not to require any at-home painkillers but one Tylenol pill before three of the PleureX drainings. I had been given pain medication intravenously when the PleureX was put in. My biggest challenge continues to be controlling fluid retention. Monitoring my diet has helped to keep it to a minimum, but it requires persistent effort. This is so characteristic of every aspect of living after a diagnosis. I am grateful that we can each find ways to keep happily living each new day.

EZLiving66

Deidre297 said:

Thank You!

Thank You Delia for your kind wishes and suggestions. Thanks to everyone for the many ways that you support and encourage others as they go through this new way of living. Two weeks ago, I had the sixth treatment with Carboplatin and Doxil. After experiencing severe back and neck pain on the fifth Neulasta shot, I declined the sixth. Tomorrow, I'll have a CT Scan done. My CA125 had dropped from 83 when I had the PleureX drainage put in  to a low of 12 on the fifth treatment. It had climbed 3 points to 15 as I was tested prior to the sixth treatment. So, it seems the tentative treatment appointment on March 30th. could be the start of a third round of six treatments. I had had the PleureX removed after a month but still experience some discomfort when I sneeze. I was able to control nausea which I experienced for a few days after treatment by sucking on small pieces of ginger. One GasX pill ended the most persistent bout of nausea. I have been fortunate not to require any at-home painkillers but one Tylenol pill before three of the PleureX drainings. I had been given pain medication intravenously when the PleureX was put in. My biggest challenge continues to be controlling fluid retention. Monitoring my diet has helped to keep it to a minimum, but it requires persistent effort. This is so characteristic of every aspect of living after a diagnosis. I am grateful that we can each find ways to keep happily living each new day.

Best of luck on your CT scan

Best of luck on your CT scan tomorrow!!  

Love,

Eldri

libby.sparks

Delia1969 said:

Hi Libby

Hi Libby,

im jus checking in to see how you are doing. Did you finish your treatment? 

Sending strength and fortitude.

love, Delia

Hi Delia. Thank you for

Hi Delia. Thank you for sending the gift of strenth and fortitude! Do tell...how are things going for you these days?

I finished chemo, 6 cycles, on Groundhog's Day. CT 3 weeks later was clear. CA125 is holding steady at 7. Happy to say that I'm feeling very well. I went back to work full time 3/8. Being back at work has helped take my mind off of my illness. I've also resumed running; I'm up to 3 miles.

Worrying about how things are going to play out going forward can be daunting. Work and running have helped a lot. I just want to live my life, as if I had never been told that I have advanced stage cancer.