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Sun, Jul 28 12:40pm · Stem Cell Treatment For CKD? in Kidney & Bladder

I began this topic several weeks ago. Since then I reached out to the Transplant Consultant group. They are incredible. The consultant took all of my information and said she would check with her neph doctors and get back. She got back in a few days. The neph doctors indicted that stem cell kidney treatment is not being done except in the labs. It is not in the clinic. She gave me a couple of other places to check but I struck out there as well. I'm not giving up, though! I'll post back here if I find something. In the meantime, the consulting service at Mayo Transplant Center is first class. They are very professional and know the issues very well (no surprise there).

Sat, Jul 27 8:08pm · Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD) in Kidney & Bladder

I mostly agree. I suggest going vegan but certainly stay away from red meat and processed foods and get your protein from plant-based sources. Phosphorous and potassium intake should be guided by what your labs tell you. I am stage IV and my phosphorous and potassium are normal. In fact, while I was on dialysis they were never out of range. So, I'm hot sure blanket statements apply for everyone. Regarding coffee, we just disagree. Here is what NKF says about coffee — http://bit.ly/2Yx6H2M. I drink about four cups a day with nothing added. In fact, this renal site suggests it can be helpful. http://bit.ly/2YrVmkM

Thu, Jul 25 9:45am · Mantle Cell Lymphoma in Blood Cancers & Disorders

I guess it depends on how involved you want to be in your treatment. The p53 mutation affects some MCL patients and it makes the disease more difficult to treat. It usually requires a non-chemo treatment. My experience is that not many general onc docs look for this and usually it is something that a doc who has a very high MCL patient load (which is not many) is aware of and will treat correctly. If you are interested I can post a link about the mutation or you can Google it.

Sun, Jul 21 8:46am · Mantle Cell Lymphoma in Blood Cancers & Disorders

By the way, there are several Facebook private groups for MCL and a listserv site that is excellent. I'm not a fan of FB even though I monitor what they talk about. The absolute best site for MCL information is acor.org. You will need to register for the Mantle Cell category when you get there. You will learn from many that have been dealing with MCL for years, most very successfully, and they are there to exchange medical information — not necessarily whine and complain (FB). I believe you will find it to be helpful. Of course, you need the best doctor and center you can find but you also probably want to learn all that you can about the disease so that you can become your own advocate. No one will advocate for you like YOU. Good luck.

Sun, Jul 21 8:37am · Mantle Cell Lymphoma in Blood Cancers & Disorders

From what I have read (and I spend a good bit of time at it), that is a good center. The protocol is a standard protocol for someone your age. I would suggest at your next relapse that you go to a national center for a good second opinion. MCL is pretty rare and there are very few national experts (probably less than 10) and there is no one single "standard" protocol. Much is based on your diagnostics. Do you know if you have the p53 mutation?

Sat, Jul 20 8:18pm · Mantle Cell Lymphoma in Blood Cancers & Disorders

Where are you treated? From your description, your treatment is called R-HYPER CVAD. The protocol is pretty much the same for all centers. The treatment is pretty aggressive and my guess is that by the end you will feel the effects. There are many new "immunothereapy" drugs. Do you know why your doctor chose this?

Thu, Jul 18 10:53am · Stage 3 Kidney Disease and Diet: What can I eat? in Kidney & Bladder

JK if your kidney function is compromised (high creatinine and high BUN), I would sure rethink. my food routine. While I understand everyone lives to eat, when it comes down to making a choice of eating what you like and kidney failure that was quite an easy decision for me. That is especially true after living on dialysis for several years. So far, vegan and calorie restriction has worked out great for my kidneys and my overall health, too. So, too, has being off dialysis!

Thu, Jul 18 9:02am · Stage 3 Kidney Disease and Diet: What can I eat? in Kidney & Bladder

High BP will sure do it. I also agree smoking probably does not help. Regarding visiting an expert at Mayo, I have never been. But, I did make plans to go about a year ago and had to cancel. I found it to be very easy and quick. I am working on that again, but this time with a different purpose. It's good you will be seen in a few weeks. Sometimes kidney issues can move very quickly and most often they are not reversible. So, you do want to have it looked at. Regarding your food list, I'm not sure where you are getting your information. Often times renal diets are for those who are on dialysis and have little to no renal function. That does not apply to those who have renal function and just want to keep it. Regarding calories and nutrition, I use an app called "Lose It." It does an excellent job of tracking your nutrition intake with a very extensive database of foods. It makes it very easy to stay on plan. Peanut butter is very high in protein — but it is not animal-based. As you probably know, your body needs protein. It is a double-edged sword, though — you just don't need to exceed your target if you are working on helping your kidneys. As for english muffin, I don't know why that would be on the list you are reading. Maybe sodium. But, if your labs show your sodium to be in range, then I'm not sure I would worry about that. Regarding calories, as I mentioned, I have been on a 1000 calorie a day diet for well over two years. Except for my kidney issues, my labs are perfect. So, I'm not putting myself into malnutrition and I do believe the lightened load has helped my kidneys. I do eat lots of nuts and salads. Good luck.