Boston stem cell 3/3/13

Well after getting a late start out of Albany yesterday (3/12) and traveling yet again through the rain, dark and road spray, we arrived in Boston around 8pm.
We rose this morning to meet a 7:00am appointment with the BWH radiology department who were so kind to place my Hickman. I cannot say enough about the staff of these facilities. Everyone is just wonderful.
The Hickman went in without a hitch. I am a little sore but its like a slight muscle strain.
After that we shot over to the doctors office and I had some blood work done and a neupogen shot.
We then went for a nice walk, had lunch and relaxed for the afternoon. The nurse called and said the CD 32 level which measures the concentration of stem cells was at 5.5.. that's good.. it has to be above 5.0 to have a pheresis done.. but the nurse wants to give me a mozipil shot to bump the CD32 level even more.
So we are going over tonight at 7pm to get the shot and will be reporting at 7am for my first pheresis. The pheresis will be done through the Hickman.. so no needle sticks.. its just going to be a long boring day.

more tomorrow...

The Schedule has arrived !!

As some may know I have been getting treated for a lymphoma that was diagnosed last year.  Progress is good and my doctors have recommended that I undergo a stem cell transplant.  Much like what my brother had… for the family… who remembers the French maid party ?? boy did we zing him..  anywho.. I digress..

Cathy and I have received or plan and here are the dates..

Basically the transplant process will begin on March 10 with daily white cell booster shots to stimulate stem cell growth.

Tuesday 3/12 we head to Boston, Dana Farber where Joe was..…. Jim.. I won’t be at practice that night..

Stem cells are collected on the 14^th and 15.. and I’ll probably head home for a day or so..

3/19 I get admitted between 4-7pm..

3/20-23 high dose chemo is given to kill off the white cells..

Sunday 3/24.. a day of rest.. To my OSL family.. please keep lift me in prayer that day !!

3/25.. Stem cells are re-infused.

From here on in I get supportive care.. which may include antibiotics, blood or platelets..

week of 3/31 – still hospitalized..

week of 7/7 is scheduled as a tentative discharge week.. which will be great because I’m hoping to be home before Jon’s Birthday on the 13^th.

Once I return it’s expected that I will have limitations on exposure to crowds as my immune system recovers.  I have been working from home and my supervisor has indicated that I can continue to do that.  I have moved my “office” out of the basement upstairs to a more appropriate area for when I come home.

I’m going to be on Skype, and the blogger page is still updated.. I’m also looking at a publishing a web site to, just to keep me busy..

So that’s about it.. Lets pray this chapter of my life is finishing up and a new chapter will start with the two weddings we have this year..

Rice round 3 under my belt..

Well I have completed three rounds of the rice protocol and the biggest problem I dealt with in the hospital was the boredom.. I had my neulastin shot yesterday.. Thanks to AJ who stayed and waited for me around 4:30 ish.
I also found out this week that I have to have a tooth extracted. This tooth is referred to as #29...right side. It had a root canal done many years ago, was capped with a post. And the cap began to fall off I had a root extension done, which basically retract the gum down so more root will show and will have a better surface for the cement to adhere to.. Well over the years the crown has come out at least 3 times and it was replaced.. This last time I figure that's it.. And left it out.. Then I started treatments. Dana Farber wanted a dental exam and my dentist recommended the tooth finally be yanked as to remove a possible source of infection. So I saw the oral surgeon who worked on my first tooth implant and he said the root was actually split and that is why the posted crown kept coming out. So this is scheduled for the 12th. We are also going to insert bone graft material into the root void to assist healing, plug the hole to prevent infection, and prep the spot for a future implant.

Today I am feeling good.. A little tired but nothing I can't deal with. One thing to do today.. Going to BJs to get soda for the Super Bowl party tomorrow..

Dana Farber visit

Happy Friday folks..

Well yesterday’s visit to Boston was very interesting..
We discovered a simple path to the hospital.. which was real fast.. .and once we parked and got into Dana Farber (DF) we were actually a little early. So we hit the cafeteria and had some coffee .,..
The registration was the usual insurance information exchange and I did consent to a having any extra blood specimens be allowed to be used in research there at DF.
We then went to the doctor’s office and after vitals were taken actually saw the doctor at the appointment time of 3pm..
We met with a Dr. Fisher whom we liked right off the bat. He basically discussed my case and lymphomas in general. We did tell him that Cathy and I are both Med. Techs so he did not have to dumb it down too much. His discussions were right in line with what we are hearing.. and he feels that the stem cell transplant is an excellent move to possible cure.. He looked at the most recent PET scan (1/22) and said it looked “real good”.. so I’m thinking I may be in remission right now..

So we moved onto the specifics and here is how it’s looking as we move ahead..

- RICE round 3 will proceed in Albany.. This is on my calendar for next week Monday – Wednesday. (1/28-30).
- Rest 3 weeks
- Dr. Fisher wants a 4th round of RICE in Albany.. (target date 2/18 – 20)
- Rest 3 weeks..
- The dates on the next items are up in the air but I will need to go back to DF for prelim. testing.. Blood work, PFT, Echocardiogram .. but that might be just one day.. That schedule is being worked on..
- The next event would be to begin boosting the stem cell production. I believe these shots can be given in Albany and may begin mid March.
- Right now we are looking at the stem cell harvest to be the first week of April.. with the admission and transplant to occur the following week. That date looks to be getting booked..
- Hospital admission they tell me is 18-21 days.. I told them they have 2 weeks… ANC count of only 1500 is needed for D/C. I can do that is 12 days I told them… The nurses eye brows raised..
- Post follow up can be done in Albany.
- Doctor says I should be healthy for the Peter’s wedding in June..

We got loads of reading material.. and once I get home I will have some restrictions.. basically to become a Sheldon..

So that’s the info as I got it..

Watch out stem cells

Cathy and I met with the Director of the AMC stem cell program yesterday. He has researched my case and agreed with Dr. W about moving forwarded with the stem cell transplant. He also indicated that the AMC staff have a closes consultative relationship with Dana Farber in Boston. There is on fly in the ointment though.. AMC does not have a contract with my insurance company but Dana Farber is in contract with my insurance provider.

The doctor looked at my most recent PET scan and he could not tell if the small amount of activity was due to disease, inflammation, or some other activity.. He actually thought it might be possible that I am already in remission because that scan was done before the RICE treatments began.

So I am working this morning and the phone rings with AMC on the caller ID.. So I grab it and it's the doctor from the stem cell program. The doctor said that he had already called Boston to discuss my case and Boston want to see me. They feel I'm an excellent candidate for a stem cell transplant. So the referral process to Dana Farber has begun... I will have my PET scan next week and see Dr. Charlie on Thursday. The last round of RICE treatment will be don on the week of the 28th and then we will see how the schedule gels together.

I can't say anything else but Praise God !

More work to do..

Happy New Year. I hope your holidays were as restful and enjoyable as mine were..

Let me fill you in..

After the last treatment back in October I had a PET scan done as a normal follow up to the chemo. Dr. Charlie liked to results but there is some residual lymphoma but a decreased metabolic activity in the lymphoma was also very good news.

So Dr. Charlie recommended that we go through 3 sessions of a RICE protocol. This protocol takes 3 days to infuse. One day in the NYOH office and then I get admitted overnight to St. Mary's hospital for the rest of the infusion.

My first infusion was accompanied by a rather nasty cold. It was not fun.. Coughing and being tired.. Was the worst. This treatment did have a couple of other side effects I've not had the opportunity to enjoy.. Luckily they only lasted one day. One effect was the result of the neulastin shot that is included in this protocol.

Well my second treatment 3weeks later went much better. This treatment concluded this week and with the cold finally gone, all I seem to be dealing with is some general weakness.

I have one more treatment scheduled for January 28th. Before that I have a PET scan on the 21st.

Dr. Charlie is now recommending a stem cell transplant as the next step to really treat as much as possible and go for a cure. We are on board with this.. And February could be a busy month.

Will try to stay up on the blogs as best I can..

Thank you and God Bless.

finishingup

I know it has been a while since my last post but that is actually a good thing.  To catch you up.. after treatment #6 my doctor took me off the adriamycin.  A nurse call it "the red devil".. and she was right.  Doc substituted another med in it's place and and ordered an echo-cardiogram.. The echo was normal.. thank God.. because the adriamycin has a side effect on the heart.

Round 7 was given 3 weeks ago with the substituted med and I tolerated it so much better..  It's the third week and I feel like my old self.  Still dealing with numbness in the hands and feet.  My weight is 206 which is a little more that what I want, but I'll deal with that later.  My last treatment is Wednesday 10/31.. Halloween.  I'm hoping the nurses dress up.. I have a PET scan scheduled for December 3rd and a doctor's appointment on 12/7.
I'm still working from home as my white counts are below 3.0 consistently.. I have not been sick like with a cold or fever.. which is great and even though at times my WBC is low, and my neutrophil count were low before my treatments, my counts have come back to a point where I can take my treatment without getting a Neurlasta shot..

So I'm looking forward to being done.. getting my hair back, and the feelings in my fingers too..

Thanks you all for your prayers and thoughts.. God Bless you all as we begin to enter into the holiday season..