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..

Round 6

After Round 4 I had a CT scan.  The results came back pretty good.. The lymphoma has shrunk in half and it's response to the chem is very good.  All my organs are normal.. things inside are great !   I met with y doctor who is recommending we take this out to 8 treatments,  which is what I was planning on anyway.. So today was round 6.. My CBC last week had a WBC of 1.7 which the doctor felt was low.. so we had another one done today and my WBC bounced back to 2.5 which meant I did not need a shot of neulastin.
So I tool my treatment and mom took me to lunch after I was done.. Thanks mom !!  I came home and took a nice nap and am now relaxing, watching The Big Bang Theory..   So six down and two to go, then life should return to normal.. well almost.. We are now looking at 2 weddings this year.. Peter and Holly in June, and Jon got engaged to Sammy this weekend.. They are looking at a late summer wedding.. we are so excited for both couples and I get 2 beautiful daughters in addition to my beautiful Annie..

Pre-round 5 appointment

It's been a while and things have been good.  I've been feeling real good after the last couple of rounds of chemo.  After the first day or so I'm bouncing back better.  Today I went to the doctor for the pre-chemo visit.  My weight is increasing.. I'm at 200 lbs now.. which I may want to hold back a few pounds.. I like the 180-190 range myself.  My white count is normal and my hemoglobin and hematocrit is back up to the 14 and 42 range respectively. That explains my energy.. We got a copy of the CT scan I had last week and the scan reported good news.  The lymphoma has shrunk to about half it's size and reports the chemo is working quite well with all my internal organs normal.  Praise GOD !!!
I've been exploring additional activities this week as I was on vacation.  Andrew and I went to the driving range and hit a bucket of balls.  I helped Jon out today with his "water extravaganza" youth event.. that was fun and boy am I tired.. So round 5 is scheduled for Monday morning.. let's keep shrinking this thing !!

Pre-Round 4 doctors appointment..

I'm recovering from round 3 really well.  It seems like it took a few more days for my digestion track to spring back but once everything evened out I feel great.  Yesterday I felt like getting some exercise so I went out and mowed the lawn.  Boy did that feel good.

Today I had my doctor's appointment prior to my next round of chemo.  The doctor and the nurse practitioner examined me and neither one of them could detect an abdominal mass or any enlarged nodes. The doctor and the NP were very happy with my progress.  Dr. Charlie actually said I was doing fantastic. 
Round 4 is scheduled for this Wednesday.  We are 99% sure that I'll only need a total of 6 treatments.  I'll get scheduled for a CAT scan around the 20th of August.  I am at the top of the hill and can start coming down the other side of the hill.