Wednesday, December 14, 2005

Not The Christmas Present I Was Looking For

I saw my hematologist/oncologist today. I got the news I didn’t want to hear but what I was expecting after reviewing my blood work from last week. I will begin chemo treatments sometime after the first of the year. I have to get a referral from my primary care doctor and approval from my insurance company to see a surgeon to have a portacath put in. This is put into my chest underneath my skin so they can use that for the chemo without having to use the veins all the time. This device can stay in there for a year or more and in the months I am not doing chemo, it just has to be flushed out once a month with saline solution.

Dr. Netaji based his recommendation not only on the blood work that showed a doubling of the lymphocytes in six months, but also on my fatigue, night sweats (but doc! I only had one bad soaking one, one night!), and the fact that the CT scan I had last week showed major growth in all the lymph nodes in my neck, stomach and groin. Concerning my neck, which bothers me the most, the CT scan report says, “There is prominent general adenopathy in every major nodual chain of the neck.” The conclusion of the two page report says, “This patient has mild splenomegaly and widespread pathological lymphadenopathy…” Basically, spleen not too badly involved, but naughty swollen lymph nodes everywhere. Using a term I have heard, I guess this makes me a lymphomaniac.

I will get more blood work on January 4th, to make sure last week's hadn’t worsened for other reasons and then I will see Dr. Nataji on January 9th to set up my chemo schedule. I did ask him about using only Rituxan as I posted yesterday. He said we could do that if I really wanted, but he prefers to “hit it with the big guns” right from the beginning. He said he has one patient in a four year remission right now. As we talked I told him that I had read a lot. Basically he said I could read anything but you can’t believe everything you read. He said he was going to email me some articles on treatment. He agreed that if I really wanted, I could try the single agent Rituxan for a month. Obviously what he left unsaid was that when that didn’t work, we would go with his recommendation.

When I got home from work tonight, his email was waiting. There were two articles from the recent Hematology magazine. I had just read the one article on line this weekend! What that author said at the end of that article was one of the reasons I want to try the less toxic Rituxan by itself. Funny, same article and he is using it to convince me to go with the big guns and I am using it to convince him to go with something less toxic first. Obviously I have given it a lot of thought lately and especially this afternoon. Why not try it “for a month?” Rituxan is one ingredient of the triple combination he wants to do anyway. If it doesn’t work, fine, at least I gave it a shot, right?

I also told him I was a little concerned with my memory. He said that once you are over 50 you need to carry a little notebook around as he does. I said, "But doctor, I forgot that Cheryl had major surgery this year! I can't recall any of it and she made me work real hard and I finally remembered the attacks that led up to the surgery, but never could remember the surgery." He just stopped his notebook speech, thought for a minute, and then said, "I think you should see a Neurologist." (Probably was thinking psychiatrist, too.) I told him I already had an appointment for the 22nd of this month because of the pain in my legs (which, by the way, he didn't think is being caused by the swollen lymph nodes).

Well, that is about it for now. I started this blog to primarily keep my extended family and friends up-to-date and I really don’t know who is reading it. I have set it up so that anonymous comments can be added without having to actually sign in and join Blogger. I have had a couple of people at church, several from my ACOR list, and one person from work tell me they are reading it. But that is it. Do me a favor? Click on the "comments" at the end of today’s post; if you are not a member of Blogger, under “choose an identity” just click the “other” button then put in your name; or choose the “anonymous” button; type inside the text block, maybe type in your first name at the end of your comments so I can guess who left the comment; then hit “publish your comment.” That is all there is to it. If you really don’t want it here for the world to see, send me an email either to my work or at home to let me know you are reading this. (For home email first type jtw890 then type – I broke that up so automatic scanners didn’t get my email and then send lots of junk) Thanks.

Trials keep You Strong,
Sorrows keep You Human,
Failures keeps You Humble,
Success keeps You Glowing,
But Only God keeps You Going!


Steve Madden said...

It may not be the best Christmas present but I hope you get better ones in the future.

All the very best for you and yours and a hope for goodwill to all men and peace on earth.

Anonymous said...

Hi, Yes, I have also read your page, it is a pity you have to start treatment, let's hope you will be in remission for a long time!!!!

Greetings Trudy in Melbourne Australia

Jim and Barb said...

Hi - we will continue to pray for you.

elyse said...

thanks for the blog, elyse

Paula and Earl said...

John: We are so sorry for your report not being what we all had been hoping for. We will just keep on praying for you, Cheryl, the girls and your doctors and nurses. We believe that God can do far more than we may expect, and we are asking him to bless you.
You know that we care. Paula and Earl

Gay Lynn Auld said...

John, you crack me up with the lymphomaniac comment. I really appreciate the detailed update without having to bother you or Cheryl when we're at church. I admire your intense involvement with your own treatment. See you Saturday at the party. Gay Lynn

stu said...

hi john, i've been reading your blog. i'm a fellow CLL'er. new to the club. my DX was in 8/05. now i'm in the watch and wait stage. i really wish you nothing but the best results in your upcoming treatments. many have done great with RFC.

Bob & Priscilla said...


I know this is not something you had wanted to start so soon, but it sounds like the right thing to do. Keep strong and keep positive. The mind is the strongest muscle in our body and you've got a great one.

We love you and are thinking of you daily. Let us know if you need anything at all.

David Arenson said...


I have been reading your excellent blog and certainly empathize with the dilemna you are facing. One never knows what will happen with treatment until the rubber hits the road; trying Rituxan alone for four weeks certainly seems like a reasonable option.

Whatever you choose, all my best to you and yours.


Diane said...

Just want you to know we are with you and your family with our prayers and our thoughts. We admire your spirit and your good humor. I know your love of family and your faith will bring you through this. We are praying for you that the Lord helps you make the right decisions. Our best to you for a Merry Christmas and our love to all. Bill and Diane

Anonymous said...

John - My husband and I pray for you and your family - we say that like it is the last hope, in reality it is the greatest hope. You are such a quiet inspiration. James & Madelin Walls

Anonymous said...
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grayday101 said...

Thanks for this BLOG. I am reading it in order. Just DXed with CLL myself, and would like to know what to expect.

Anonymous said...

Thank you John for your blog. I was diagnosed in 2006 and they are saying treatment to start in the very near future for me...Wishing you all the best..Jill

ps I went to the very start of your blog so hope you are doing fine...Hugs