Hi Bob,
I will be following your journey and sending lots of prayers and love your way!
Keep your head up and stay strong.
Good Luck and God Bless.
Ginger and Redheads
Forums
Re: My myeloma journey (and experience at Mayo Rochester)
All the best Bob. Keep your eye on the prize. I'll be following your posts.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: My myeloma journey (and experience at Mayo Rochester)
I like this blog thing, should be interesting.
Re: My myeloma journey (and experience at Mayo Rochester)
This morning my sister and I got up and went down to the Mayo and I received my second pair of Neupogen shots. Was in and out in just a few minutes.
So far, about the only possible side effect I have felt from the shots is being a bit tired, which I solved by napping for a couple of hours, after reading a book at the Gift of Life library.
My sister left after my shots this morning and one of high school buddies, Mike Jackson, will be here in about another hour to take her place as care giver for the next week. He flew up from Oklahoma. He is a retired pharmacist and I am sure he will be a wealth of information about what I need to do to remain healthy and strong during my journey with the Mayo. He's already texted me and let me know he's hungry and I'll probably drag him down to Victoria's, which is my favorite dinner spot I have found, so far, in Rochester. I am going to ask them if I can get frequent flyer miles from them, as this will be the third time I have eaten there in just a bit over a week.
Late evening evening entry: Am feeling bone pain and am rather tired, also, and it is only 9:30 PM. Going to try to get some sleep and hopefully feel a bit better, tomorrow.
So far, about the only possible side effect I have felt from the shots is being a bit tired, which I solved by napping for a couple of hours, after reading a book at the Gift of Life library.
My sister left after my shots this morning and one of high school buddies, Mike Jackson, will be here in about another hour to take her place as care giver for the next week. He flew up from Oklahoma. He is a retired pharmacist and I am sure he will be a wealth of information about what I need to do to remain healthy and strong during my journey with the Mayo. He's already texted me and let me know he's hungry and I'll probably drag him down to Victoria's, which is my favorite dinner spot I have found, so far, in Rochester. I am going to ask them if I can get frequent flyer miles from them, as this will be the third time I have eaten there in just a bit over a week.
Late evening evening entry: Am feeling bone pain and am rather tired, also, and it is only 9:30 PM. Going to try to get some sleep and hopefully feel a bit better, tomorrow.
Last edited by tropicdiver on Sun Nov 02, 2014 11:31 pm, edited 1 time in total.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Glad to hear things are going well so far for you, Bob. And thanks again for posting your updates for everyone to read here. I'm sure a lot of people will benefit from it.
In case you haven't seen it already, Beacon columnist Andrew Gordon (aka "goldmine848" here in the forum) wrote a long posting earlier this year called "Stem Cell Harvest - The Complete Guide." You may find it worth reading at some point.
Also, if you start to experience any side effects from the Neupogen injections -- I'm thinking of bone pain, in particular -- you may find the tips in these previous Beacon forum discussions related to Neupogen to be helpful.
Good luck as your journey continues!
In case you haven't seen it already, Beacon columnist Andrew Gordon (aka "goldmine848" here in the forum) wrote a long posting earlier this year called "Stem Cell Harvest - The Complete Guide." You may find it worth reading at some point.
Also, if you start to experience any side effects from the Neupogen injections -- I'm thinking of bone pain, in particular -- you may find the tips in these previous Beacon forum discussions related to Neupogen to be helpful.
Good luck as your journey continues!
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: My myeloma journey (and experience at Mayo Rochester)
Boris, thanks for your input, and I will check out the links you shared with me, probably later tomorrow night, as I have a full day planned tomorrow.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Bob, I'm sorry for your situation, but I'm glad to hear that you are in remission.
I was diagnosed with multiple myeloma in October 2010, and live in western NC. I had a stem cell transplant (SCT) in September 2012, as an out-patient. The SCT did not put my myeloma into remission but it did somehow get rid of my abnormal chromosomes (17p, deletion), which has been a big plus.
I did my stem cell harvesting at Mayo Jacksonville, but had the actual SCT at Duke, primarily because Duke did it as an "out-patient", and Mayo Jacksonville, at that time, did not.
My questions to you are:
Is it normal to get a SCT when you're in remission?
Since you live in Florida, why did you not go to Mayo Jacksonville, instead of Mayo Minneapolis?
For what it's worth, here's my summary of my September 2012 SCT experience:
At Duke, the process involved a week in the hospital and 3 weeks of staying in the immediate area for daily labs, checkups and treatment as an out-patient. At Mayo Jacksonville, they keep you in the hospital for four weeks and then in the local area for a few weeks. I liked Duke's idea better, and imagine there are some other different ways of doing it around the country.
While in the hospital, I got 14 heavy doses of chemo (divided among 4 different drugs) designed to kill as many cancer cells as possible. It also destroyed almost all of the white cells and platelets and many of the red cells.
My WBC, as planned, bottomed out between 0.0 and 0.1; platelets bottomed out at 4K, and RBC at 9.1. They said the result of destroying so many healthy cells would be death for most people if they weren't able to replenish the body with the stem cells. So, the stem cells don't do anything to treat the cancer; they merely help get the body restarted.
The actual transplant was done as an out-patient, the day after I got out of the hospital. The death rate for people using their own stem cells is 2%, and I used my own. Using donor stem cells is much riskier and the recovery time is 4 to 5 times as long.
They transfuse you if you get below 10K in platelets, and below an RBC of 9. So, I got platelets transfused, but not any whole blood transfusions. And everyone gets Neupogen to help the white cells get regenerated.
I didn't get any mouth sores, which was a biggy; had mild vomiting for a few days and severe diarrhea for a few days. They said I was about a week ahead of the curve and I was one day away from being released from the clinic when I started having low blood pressure problems due to dehydration. They were giving me a liter of IV fluids per day and I was drinking 2 to 3 liters of fluids, but the diarrhea countered all that for a couple of days.
Eventually we beat the diarrhea and I got released from the daily visits about 10 days after the SCT.
Stay hydrated,
E.C.
I was diagnosed with multiple myeloma in October 2010, and live in western NC. I had a stem cell transplant (SCT) in September 2012, as an out-patient. The SCT did not put my myeloma into remission but it did somehow get rid of my abnormal chromosomes (17p, deletion), which has been a big plus.
I did my stem cell harvesting at Mayo Jacksonville, but had the actual SCT at Duke, primarily because Duke did it as an "out-patient", and Mayo Jacksonville, at that time, did not.
My questions to you are:
Is it normal to get a SCT when you're in remission?
Since you live in Florida, why did you not go to Mayo Jacksonville, instead of Mayo Minneapolis?
For what it's worth, here's my summary of my September 2012 SCT experience:
At Duke, the process involved a week in the hospital and 3 weeks of staying in the immediate area for daily labs, checkups and treatment as an out-patient. At Mayo Jacksonville, they keep you in the hospital for four weeks and then in the local area for a few weeks. I liked Duke's idea better, and imagine there are some other different ways of doing it around the country.
While in the hospital, I got 14 heavy doses of chemo (divided among 4 different drugs) designed to kill as many cancer cells as possible. It also destroyed almost all of the white cells and platelets and many of the red cells.
My WBC, as planned, bottomed out between 0.0 and 0.1; platelets bottomed out at 4K, and RBC at 9.1. They said the result of destroying so many healthy cells would be death for most people if they weren't able to replenish the body with the stem cells. So, the stem cells don't do anything to treat the cancer; they merely help get the body restarted.
The actual transplant was done as an out-patient, the day after I got out of the hospital. The death rate for people using their own stem cells is 2%, and I used my own. Using donor stem cells is much riskier and the recovery time is 4 to 5 times as long.
They transfuse you if you get below 10K in platelets, and below an RBC of 9. So, I got platelets transfused, but not any whole blood transfusions. And everyone gets Neupogen to help the white cells get regenerated.
I didn't get any mouth sores, which was a biggy; had mild vomiting for a few days and severe diarrhea for a few days. They said I was about a week ahead of the curve and I was one day away from being released from the clinic when I started having low blood pressure problems due to dehydration. They were giving me a liter of IV fluids per day and I was drinking 2 to 3 liters of fluids, but the diarrhea countered all that for a couple of days.
Eventually we beat the diarrhea and I got released from the daily visits about 10 days after the SCT.
Stay hydrated,
E.C.
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Banrelk4 - Name: E.C.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 73
Re: My myeloma journey (and experience at Mayo Rochester)
Today started out rather well. Received my two Neupogen shots and attended an educational class on how to keep my central venous catheter properly clean along with the area around my chest where it comes out. Seems rather simple and cut and dried, plus the folks at Mayo gave me lots of information, including a DVD, in case our memory fails us (between my caregiver and myself).
Around 3:00 pm, I started getting nauseated and my bone pain increased, which I have a feeling is from the Neupogen shots. I have felt rather crappy the rest of the day, and it is now 8:30 pm. It is not the end of the world, just don't feel so hot.
I just called the Mayo Surgical Phone Line, and I am to report at 10:30 am tomorrow at the Rochester Methodist Hospital for the insertion of the above referenced catheter into my body.
That's all for this evening. I'm going to try to get some sleep and shake this not so hot feeling that I currently have.
Around 3:00 pm, I started getting nauseated and my bone pain increased, which I have a feeling is from the Neupogen shots. I have felt rather crappy the rest of the day, and it is now 8:30 pm. It is not the end of the world, just don't feel so hot.
I just called the Mayo Surgical Phone Line, and I am to report at 10:30 am tomorrow at the Rochester Methodist Hospital for the insertion of the above referenced catheter into my body.
That's all for this evening. I'm going to try to get some sleep and shake this not so hot feeling that I currently have.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
EC, I can't tell you if it is normal or not to have a SCT when one is in complete remission. I think it is a great question and I'll ask the folks at Mayo and let you know what they say. I was told it would help me stay off chemo (hopefully) longer and give me some better quality of life. I only found out I was in complete remission during my last meeting with Dr. Rajkumar in Rochester. He is a brilliant doctor, IMHO, and helped me to screw up my courage to proceed with my SCT, which took me three months to do, BTW.
Why did I pick Rochester over Jacksonville? Pardon my French, but I have found the medical team at the Mayo in Rochester a bunch of bad @sses. They have taken so much time with me and have been very detailed with me in every step of the way, and I am sure there are many other medical teams that are as good, but I have 100% faith in the team of doctors and nurses that are going to take care of me.
Why did I pick Rochester over Jacksonville? Pardon my French, but I have found the medical team at the Mayo in Rochester a bunch of bad @sses. They have taken so much time with me and have been very detailed with me in every step of the way, and I am sure there are many other medical teams that are as good, but I have 100% faith in the team of doctors and nurses that are going to take care of me.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Bob,
First of all good luck, and God bless you.
Right now my mom, who I love so much, is right about at the same spot as you. We live in Rochester, NY, and she is going to a strong hospital.
She had her harvest last week and final testing yesterday. She is 72 and was diagnosed this year. Her 3-drug treatment worked wonderful, and she is in complete remission.
I am looking forward to your answer on having the stem cell transplant when in complete remission. Is that common? I have followed your doctor and feel he is really experienced.
Do you know what your drug plan is for the actual stem cell transplant? Is it melphalan, and if so, how much?
Thank you for all your posts!
God bless,
D
First of all good luck, and God bless you.
Right now my mom, who I love so much, is right about at the same spot as you. We live in Rochester, NY, and she is going to a strong hospital.
She had her harvest last week and final testing yesterday. She is 72 and was diagnosed this year. Her 3-drug treatment worked wonderful, and she is in complete remission.
I am looking forward to your answer on having the stem cell transplant when in complete remission. Is that common? I have followed your doctor and feel he is really experienced.
Do you know what your drug plan is for the actual stem cell transplant? Is it melphalan, and if so, how much?
Thank you for all your posts!
God bless,
D
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