The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.
another anniversary
Comments
-
Glad to hear your hanging in
Glad to hear your hanging in there Ron, I hope the aches and pains go easy on you. This blog needs you to represent the hope of long-term survival. It allows us to say we know a guy who survived late stage colorectal cancer for 20 years ongoing. That's a big thing for those that think their life is over after diagnosis. I know it's not easy, but I/we are glad your there....................................Dave
-
-
-
-
-
Actually I have an
Actually I have an update on my health. Five years ago my kidney problems reached a high point with my protein loss reaching nearly 8 grams a day. That put me borderline between stage 2 and 3 kidney failure. I have auto immune nephrotic syndrome of the kidneys. Three kidney biopsies have shed no light on it's cause.The baseline for protein urea (protein loss thru the urine) is .150 g a day. I was put on cyclosporine which is a powerful immuno suppressant normally used to stop rejection in transplant patients. It has stabalised my protein loss at just over a gram a day. I saw my nephrologist last wednesday. My protein is now normal. I appear to be in full remission from nephrotic syndrome. I asked how that was possible . My neph said that it was rare but sometimes the dampening action of cyclosporine allows the immune system to reset. He will see me again in a month to check the results again and if they are the same he intends to taper me off the cyclosporine under close monitoring. It appears I may be NED x 2. Ron.
-
Wow! Double great news :-)ron50 said:Actually I have an
Actually I have an update on my health. Five years ago my kidney problems reached a high point with my protein loss reaching nearly 8 grams a day. That put me borderline between stage 2 and 3 kidney failure. I have auto immune nephrotic syndrome of the kidneys. Three kidney biopsies have shed no light on it's cause.The baseline for protein urea (protein loss thru the urine) is .150 g a day. I was put on cyclosporine which is a powerful immuno suppressant normally used to stop rejection in transplant patients. It has stabalised my protein loss at just over a gram a day. I saw my nephrologist last wednesday. My protein is now normal. I appear to be in full remission from nephrotic syndrome. I asked how that was possible . My neph said that it was rare but sometimes the dampening action of cyclosporine allows the immune system to reset. He will see me again in a month to check the results again and if they are the same he intends to taper me off the cyclosporine under close monitoring. It appears I may be NED x 2. Ron.
So glad to hear that you're NED x 2. I hope the good news continues for you for a long time.
Grace (lizard44)
-
Super duper news, Ronron50 said:Actually I have an
Actually I have an update on my health. Five years ago my kidney problems reached a high point with my protein loss reaching nearly 8 grams a day. That put me borderline between stage 2 and 3 kidney failure. I have auto immune nephrotic syndrome of the kidneys. Three kidney biopsies have shed no light on it's cause.The baseline for protein urea (protein loss thru the urine) is .150 g a day. I was put on cyclosporine which is a powerful immuno suppressant normally used to stop rejection in transplant patients. It has stabalised my protein loss at just over a gram a day. I saw my nephrologist last wednesday. My protein is now normal. I appear to be in full remission from nephrotic syndrome. I asked how that was possible . My neph said that it was rare but sometimes the dampening action of cyclosporine allows the immune system to reset. He will see me again in a month to check the results again and if they are the same he intends to taper me off the cyclosporine under close monitoring. It appears I may be NED x 2. Ron.
May it continue for many years.
TRU
-
-
-
Great news !ron50 said:Actually I have an
Actually I have an update on my health. Five years ago my kidney problems reached a high point with my protein loss reaching nearly 8 grams a day. That put me borderline between stage 2 and 3 kidney failure. I have auto immune nephrotic syndrome of the kidneys. Three kidney biopsies have shed no light on it's cause.The baseline for protein urea (protein loss thru the urine) is .150 g a day. I was put on cyclosporine which is a powerful immuno suppressant normally used to stop rejection in transplant patients. It has stabalised my protein loss at just over a gram a day. I saw my nephrologist last wednesday. My protein is now normal. I appear to be in full remission from nephrotic syndrome. I asked how that was possible . My neph said that it was rare but sometimes the dampening action of cyclosporine allows the immune system to reset. He will see me again in a month to check the results again and if they are the same he intends to taper me off the cyclosporine under close monitoring. It appears I may be NED x 2. Ron.
The swelling in your legs must be improving ? do you feel a lot lighter ?
Steve
-
Hi SteeveGSP2 said:Great news !
The swelling in your legs must be improving ? do you feel a lot lighter ?
Steve
Unfortunately I am still juggling oedeema problems. The middle of last year the cyclosporine was holding my protein loss at around 1.5 grams. From out of nowhere my legs started to swell and I had trouble breathing from fluid half filling my lungs. My neph confirmed that it was not the nephrotic syndrome causing the problem. He did ultrasounds of my liver ,heart , pancreas, kidneys and bladder. Although there was nothing conclusive he believes that I am suffering congestive heart failure possibly another long term gift of 5Fu. I have to keep a close check on my weight and if I gain a couple of kilos in a few days I have to restrict my fluid intake to a litre a day and double my diuretics. Unfortunately we have had over a year of hot dry weather on the mid east coast of Australia. When he gave me my results a couple of weeks back he did say that some of my kidney functions were not too good. I appear to have been suffering dehydration (hard not to with weeks of temps in the mid 30 c's) My urea was up around 11 point something. He will monitor that when I see him next month . The forecast is for continued heatwave conditions. I am not taking any diuretics for the time being and keeping a close eye on my feet and legs. I don't feel much change in my legs because of severe neuropathy. Life remains a game of stay on the tightrope, never a dull moment. Ron.
-
-
Woohooo
Woohoo Ron that is wonderful. You have had an amazing and not very pleasant recovery and still continue to stay on this board and support those people that need to hear your story - for that I'm so thankful. You were here when in the beginning for me so I'm thrilled you are still posting. You've been through a lot, but I'm wishing the best health for you.
Thanks for being such a great part of this community.
Kim
Discussion Boards
- All Discussion Boards
- 6 Cancer Survivors Network Information
- 6 Welcome to CSN
- 122.6K Cancer specific
- 2.8K Anal Cancer
- 456 Bladder Cancer
- 312 Bone Cancers
- 1.7K Brain Cancer
- 28.6K Breast Cancer
- 408 Childhood Cancers
- 28K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13.1K Head and Neck Cancer
- 6.4K Kidney Cancer
- 681 Leukemia
- 803 Liver Cancer
- 4.2K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 242 Multiple Myeloma
- 7.2K Ovarian Cancer
- 70 Pancreatic Cancer
- 493 Peritoneal Cancer
- 5.6K Prostate Cancer
- 1.2K Rare and Other Cancers
- 544 Sarcoma
- 743 Skin Cancer
- 659 Stomach Cancer
- 192 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.4K Lifestyle Discussion Boards