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Newbie

by johnk on Sun Mar 18, 2012 11:53 am

Hi, I am John Kavanagh from Greensboro,NC. I was hospitalized and had an endoscopy as a result of bleeding ulcers in August,2011. My GI doctor had been following my bloodwork since that procedure. She was mainly watching the hemoglobin because I kept complaining about not having the same energy level when I ran. While I was in the hospital for ulcers, my hemoglobin got down to 7.5 and they gave me a blood transfusion. Since my August event, my hemoglobin has not gotten any higher than about 12.5. I think my normal is around 13.5. My blood work also showed an elevated protein and upon further tests the GI doctor thought it was wise I see a hematologist to just to be safe. I was diagnosed with multiple myeloma on February 2nd,2012. My M spike is 2.6 and I have 22% plasma cells. The Xrays showed multiple lesions and holes in my bones. Most of the bone damage is in the upper body and my doctor does not want me lifting more than 20lbs. My legs are still strong and can still run, bike, and swim. In fact, I did a 5 mile running race yesterday.

I began my chemo treatment on the first of March. I take the Velcade shots 2x per week, Revlimid nightly, and dex 3x per week. My Greensboro doctor originally had me scheduled for Velcade once a week and no initial taking of Revlimid. But in late February, I visited my transplant doctor at Duke, Dr, Gasparetto. She thought I was a good candidate for more agressive treatment so she suggested the Velcade 2x per week and to immediately start the Revlimid. My Greensboro doctor concurred and described the different approaches this way: "He was going to get me to Washington in 6 hours. Dr. G wanted to get me there in 4 hours."

My chemo treatment is supposed to continue through the end of May. I am tentatively scheduled for a bone marrow transplant in June,2012.

johnk
Name: John Kavanagh
Who do you know with myeloma?: myself
When were you/they diagnosed?: February 2nd, 2012
Age at diagnosis: 61

Re: Newbie

by Ritz on Sun Mar 18, 2012 4:41 pm

Hi John,
All the best to you and hope for a great response on your coming sct. I was on chemo for close a year before my sct. The Rev is what brought the counts low enough for the sct.
ritz

Ritz
Name: Ritz
Who do you know with myeloma?: myself
When were you/they diagnosed?: Oct 2010
Age at diagnosis: 62

Re: Newbie

by johnk on Mon May 28, 2012 2:29 pm

Below is my daughter's post on Caring Bridge last week. It gives a good update on where I am in the process. I stopped my chemo on May 10th. My local oncologist was very pleased with my response. The M spike went from 2.6 to .51. The plasma cells went from 22% to 10%. I had very few side effects to the chemo regimen. I had to stop running about 6 weeks ago because of a sacral insufficiency fracture discovered through a MRI. It was quite painful but after about 2 weeks and plenty of pain medicine, it got better. I am still able to swim,bike indoors, and fast walk.

"John is preparing for his battle with multiple myeloma to become much more intense as he will undergo a stem cell transplant that will change his life for the next few years.  He and Elizabeth(my other daughter and caregiver) spent a full day at Duke on Monday for his official transplant workup and schedule details.  His life is going to be quite rigid, hectic, and stressful over the next two months. 

"The transplant process will begin June 6 when he will go to Duke for the catheter (line) placement which will be in his chest area.  He will also have heavy duty chemotherapy at their outpatient clinic followed by a few days of hydration through the line.  The chemo drug, Cytoxan, will cause his blood counts to fall and they will be monitored closely for the following week.  The purpose of Cytoxan is to knock out as MUCH cancer as possible before the stem cell collection.  He will lose his hair about a week after the Cytoxan. 

"He will return home to Greensboro the week of June 10-17 and will monitor blood counts and his temperature.  The number one risk at this point will be infection so he will have to be PARANOID of GERMS.  He must stay home and rest the entire week, so this will be a good week for friends to bring him food!  But if you are sick, please stay away from our Dad during this time!  He will also be taking Neupogen shots to bring blood counts back up and Cipro to fight any infection. 

"Dad returns to Duke for three days on June 18 for the first attempt at stem cell collection, a process called Apheresis.  According to Wikipedia, Apheresis is a medical technology in
which the blood of a patient is passed through an apparatus that separates out one particular
constituent and returns the remainder to the circulation.  There are lots of variables so he may or may not be ready on the 18th or they may or may not get enough stem cells so he doesn’t know yet if he will have to continue Apheresis the next day.  He gets a break June 21-24 so he
should feel better those days!  On June 24 he will move into his temporary apartment at Duke. 

"On June 25 Dad will be admitted to Duke for three days and have 2 more chemotherapy
treatments(carmustine and melphalan).  The actual stem cell transplant is scheduled to take place on June 29 at the outpatient clinic.  Then, Dad will stay in his temporary apartment for 2-3 weeks and will visit the daily clinic every day until they clear him to return to Greensboro.  The
average amount of time in the daily clinic for a transplant is 17 days so it could be more or less."

johnk
Name: John Kavanagh
Who do you know with myeloma?: myself
When were you/they diagnosed?: February 2nd, 2012
Age at diagnosis: 61

Re: Newbie

by johnk on Wed Sep 11, 2013 3:19 pm

Has anyone heard of any multiple myeloma patient being diagnosed with PML or MS? I had a recent MRI of the brain and the neurologist thinks I might have one of these conditions.They are still doing blood work and I am scheduled for a spinal tap for tomorrow.
He said chemo can cause these brain disorders. I had my transplant on 6/29/12 and started Revlimid(10mg) and Zometa in early 2013. Currently not taking either of these drugs. Also, I don't have any M spike.

Thanks.

John

johnk
Name: John Kavanagh
Who do you know with myeloma?: myself
When were you/they diagnosed?: February 2nd, 2012
Age at diagnosis: 61


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