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bassfamily
@bassfamily

Posts: 2
Joined: Dec 03, 2018

Leukemia and Lymphoma

Posted by @bassfamily, Mon, Dec 3 3:19pm

For treatment what Mayo hospital would you recommend for treatment, Rochester Mn. or Phoenix Ariz.?

REPLY

Hi @bassfamily and welcome to Mayo Clinic Connect. You'll notice that I moved your message to the Blood Cancers group https://connect.mayoclinic.org/group/blood-cancers-disorders/

You ask which Mayo Clinic is best for leukemia and lymphoma treatment: MN or AZ. The thing about Mayo Clinic is that all experts work together as teams regardless of location. This means that you have the expertise of all specialists at all campuses regardless of where you seek treatment. I'm tagging @1nan @travelgirl and @loli to share their experiences with you.

@bassfamily, we look forward to getting to know you. Are you seeking information for yourself or a family member? Is one location closer or more convenient for you over the other?

Last year I was diagnosed with 3 types of cancer after experiencing real pain in my stomach area. I had leukemia, large B CELL and Follicular lymphoma all at once. Needless to say, our initial reaction was devastating. We went to Rochester and saw Dr. Parikh. After test after tests, we started a series of all day chemo treatments at Rochester that lasted 4 months. I love Mayo and the people. They along with much prayer and great medicine helped save my life. I used what I teach leaders and the "Power of 3" gave me a path to walk through this incredibly tough time. Today, all cancer is gone. I love the Lord and Mayo Clinic. Dr. Parikh is the best!

@bassfamily I am a patient at Mayo in Jacksonville. Like @collenyoung said you treatment plan is decided by the entire Mayo Clinic staff. So no matter where you go the treatment will be the same. My first suggestion would be to go to the closest Mayo Clinic facility to your home.
I originally contacted the Rochester facility, and they suggested I call their Jacksonville location. It makes it much easier for me to get to my appointments being only 4 hours away versus taking 2 airplanes.
I wish you the best and keep us posted how it all goes for you?
Jackie

@robbhiller

Last year I was diagnosed with 3 types of cancer after experiencing real pain in my stomach area. I had leukemia, large B CELL and Follicular lymphoma all at once. Needless to say, our initial reaction was devastating. We went to Rochester and saw Dr. Parikh. After test after tests, we started a series of all day chemo treatments at Rochester that lasted 4 months. I love Mayo and the people. They along with much prayer and great medicine helped save my life. I used what I teach leaders and the "Power of 3" gave me a path to walk through this incredibly tough time. Today, all cancer is gone. I love the Lord and Mayo Clinic. Dr. Parikh is the best!

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Hello @robbhiller, welcome to Connect. Facing a diagnosis of all three of those cancers must have been overwhelming, but it is great to hear that you were able to conquer all three. Here are a few discussions that you may also find worth your time to read through:

https://connect.mayoclinic.org/discussion/lymphoma-1/, many members discuss having follicular lymphoma
https://connect.mayoclinic.org/discussion/b-pll/

@robbiller, if you are comfortable sharing, would you mind talking about how receiving chemotherapy went for you?

First of all, Mayo knows how to do this as well as well as anyone. Having said that it is not easy and I had to start at 7:00 am and finished at 5:00 PM. The first chemo was the hardest but they knew how to handle my initial reaction. The next two were ok and the last 3 were somewhat harder after the fact. I am now writing a book on how I handled the 5 month journey with a New York publisher and how I made it through. The book will be called the Power of 3 and this kept me alive and making the best out of a tough situation. Blessings to you.

@colleenyoung

Hi @bassfamily and welcome to Mayo Clinic Connect. You'll notice that I moved your message to the Blood Cancers group https://connect.mayoclinic.org/group/blood-cancers-disorders/

You ask which Mayo Clinic is best for leukemia and lymphoma treatment: MN or AZ. The thing about Mayo Clinic is that all experts work together as teams regardless of location. This means that you have the expertise of all specialists at all campuses regardless of where you seek treatment. I'm tagging @1nan @travelgirl and @loli to share their experiences with you.

@bassfamily, we look forward to getting to know you. Are you seeking information for yourself or a family member? Is one location closer or more convenient for you over the other?

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We are seeking information for our great granddaughters mother. Do you know if Medicaid will cover experimental therapy? She was considering Arizona as would be easier to get around and be able to have more family support.

@bassfamily

We are seeking information for our great granddaughters mother. Do you know if Medicaid will cover experimental therapy? She was considering Arizona as would be easier to get around and be able to have more family support.

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Hi @bassfamily, I'm afraid I do not know all the guidelines and criteria for Medicaid. However, the people in the Appointments department do. I suggest that you call Mayo Clinic AZ and ask all the questions you have. Here are the contact numbers for all 3 campuses, including AZ http://mayocl.in/1mtmR63

Hi. Two months ago, my primary doc saw weird numbers on a routine blood test and referred me to a nephrologist, who ordered an ultrasound that showed an atrophied kidney, so she then sent me to the urologist, who ordered a CT scan that showed a retroperitoneal mass, so she sent me to a surgeon, who sent me to the interventional radiologist for a biopsy (WHEW!). I just got the phone call with the diagnosis of small B cell lymphoma and will see the oncologist next (in a couple of weeks).

I am freaking out! I’m not that great at being patient, and I don’t yet know the stage or any treatment options/plan, so my questions are pretty amorphous at this point, but I would appreciate any advice. The mass took out my right kidney so I also have Stage 3 CKD, but my nephrologist reassured me that the two won’t really impact how either is treated.

All this in 2 months. I’m 70 and until about 6 months ago I was quite active (walking, hiking, doing Zumba). Now my exercise is mostly walking and I am just looking for suggestions on how best to approach this whole thing for maximum sanity, and any questions I should ask, things you think are good to know or do when first diagnosed, etc. Thank you in advance, I am grateful for this group!

@stephaniet

Hi. Two months ago, my primary doc saw weird numbers on a routine blood test and referred me to a nephrologist, who ordered an ultrasound that showed an atrophied kidney, so she then sent me to the urologist, who ordered a CT scan that showed a retroperitoneal mass, so she sent me to a surgeon, who sent me to the interventional radiologist for a biopsy (WHEW!). I just got the phone call with the diagnosis of small B cell lymphoma and will see the oncologist next (in a couple of weeks).

I am freaking out! I’m not that great at being patient, and I don’t yet know the stage or any treatment options/plan, so my questions are pretty amorphous at this point, but I would appreciate any advice. The mass took out my right kidney so I also have Stage 3 CKD, but my nephrologist reassured me that the two won’t really impact how either is treated.

All this in 2 months. I’m 70 and until about 6 months ago I was quite active (walking, hiking, doing Zumba). Now my exercise is mostly walking and I am just looking for suggestions on how best to approach this whole thing for maximum sanity, and any questions I should ask, things you think are good to know or do when first diagnosed, etc. Thank you in advance, I am grateful for this group!

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Hi, @stephaniet, and welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Leukemia and Lymphoma." I did this so that you can connect with other members talking about lymphoma.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @bassfmily @robbhiller @travelgirl and others. I'd also like to introduce you to @1nan.

A brand new diagnosis of diagnosis of small B cell lymphoma is stressful and challenging. I'm guessing you will have questions about the diagnosis, treatment options and what will happen next. I'm confident these members will be helpful to you as you process this new information and the feeling of freaking out, seek what questions you should ask and things that are good to know or do when first diagnosed, and await more information on the stage or any treatment options/plan.

Here is some Mayo Clinic information on lymphoma you may be interested in https://www.mayoclinic.org/diseases-conditions/lymphoma/symptoms-causes/syc-20352638.

As you think about this diagnosis today, @stephaniet, what would you say is your greatest concern right now?

@lisalucier

Hi, @stephaniet, and welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Leukemia and Lymphoma." I did this so that you can connect with other members talking about lymphoma.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @bassfmily @robbhiller @travelgirl and others. I'd also like to introduce you to @1nan.

A brand new diagnosis of diagnosis of small B cell lymphoma is stressful and challenging. I'm guessing you will have questions about the diagnosis, treatment options and what will happen next. I'm confident these members will be helpful to you as you process this new information and the feeling of freaking out, seek what questions you should ask and things that are good to know or do when first diagnosed, and await more information on the stage or any treatment options/plan.

Here is some Mayo Clinic information on lymphoma you may be interested in https://www.mayoclinic.org/diseases-conditions/lymphoma/symptoms-causes/syc-20352638.

As you think about this diagnosis today, @stephaniet, what would you say is your greatest concern right now?

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Stephanie, I know the feeling of discovering cancer especially your kind. Mayo found 3 different ones for me. Today, with prayers, great medicine and how I dealt with the tough 5 months of chemo, I am healed. There is no cancer. As a result of this, I am writing a book for a New York publisher that is all about how we can go through adversity and come out whole.
"The Power of 3" is what I discovered. Ask the right questions, find support with friends, an advocate and your faith, and activate your God given gifts. In doing so, you will be so much more successful dealing with a tough disease. May the Lord be your healer along with the great Mayo team. Robb

@lisalucier

Hi, @stephaniet, and welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Leukemia and Lymphoma." I did this so that you can connect with other members talking about lymphoma.

Click VIEW & REPLY in the email notification and you will be able to read through the past messages by members like @bassfmily @robbhiller @travelgirl and others. I'd also like to introduce you to @1nan.

A brand new diagnosis of diagnosis of small B cell lymphoma is stressful and challenging. I'm guessing you will have questions about the diagnosis, treatment options and what will happen next. I'm confident these members will be helpful to you as you process this new information and the feeling of freaking out, seek what questions you should ask and things that are good to know or do when first diagnosed, and await more information on the stage or any treatment options/plan.

Here is some Mayo Clinic information on lymphoma you may be interested in https://www.mayoclinic.org/diseases-conditions/lymphoma/symptoms-causes/syc-20352638.

As you think about this diagnosis today, @stephaniet, what would you say is your greatest concern right now?

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Hard to pinpoint my greatest concern…possibly being a burden, or an object of faux pity maybe…not being able to be physically active is perhaps the biggest one. Thought provoking!

@robbhiller

Stephanie, I know the feeling of discovering cancer especially your kind. Mayo found 3 different ones for me. Today, with prayers, great medicine and how I dealt with the tough 5 months of chemo, I am healed. There is no cancer. As a result of this, I am writing a book for a New York publisher that is all about how we can go through adversity and come out whole.
"The Power of 3" is what I discovered. Ask the right questions, find support with friends, an advocate and your faith, and activate your God given gifts. In doing so, you will be so much more successful dealing with a tough disease. May the Lord be your healer along with the great Mayo team. Robb

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@robbhiller thank you for your feedback. I review books for publishers, so I especially applaud your writing efforts!

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