Toms History

[TeriTom]

Tom was dx. 1989 [age 48] I met him in 1994 so I'm not sure what initial treatment he had. I'll find out. I do know that he has follicular [i think small cell]B-cell stage 4. They were prepping him for a BMT when suddenly his system turned on [or the chemo worked]! He stayed in remission until 1997. He had treatment [interferon] for one node on his neck [no B symptoms] remission until Sept 2001 [shingles clued us in] Treated with 4 rounds of Leukeran and Prednisone. Very temporary and when the tumors would start to grow again it seemed much more aggresive. Started Rituxan [by itself] May 2002-this is where it gets confusing but interesting-

By now I'm into full time investigator mode! Thank you Robert Miller and this community! We had a 50 Acre ranch and another 27 acre parcel-Tom lived with roundup and 24-D! So he agreed that he wouldn't spray anymore, The neighbor said that he would spray the pastures [he had all the right equip. mask and all, but do you think I could keep Tom out of the way!!!?]

Sprayed the pastures after 1st rituxan round, 2nd rituxan 1st part of June. Fathers day we layed the motorcycle down! Tom just went to sleep! Found out that allpurinol could do that. 3rd treatment tumors still growing so I ask the onc if the stress from the wreck could be causing them to grow? No- it's not working and Tom decides that he wants to quit everything and get all the drugs out of his system.
August- Tumors begin to shrink!
Sold the ranch [finally] in Oct.
Moved to Utah and new onc. in Feb.
One Tumor growing huge from under his arm clear around to breatbone when he goes in to meet the new internist [whos married to the onc.] The internist tells his wife the onc that she must see him right away! Went in the following week and the Tumor was almost gone! The onc. tells us the rituxan probably had a delayed reaction?

This is probably more information than you cared to know but this NHL makes you crazy trying to figure it out!

The last 3 weeks he has had B symptoms and some tumors [7mm] on one side of his neck. The fatique and anemmia have caused some depression.. He's also had some irratic heartbeats that were explained that he doesn't have enough blood-He made the decision to have a blood transfusion in hopes that it will bring up his energy for the summer [my hopes that it will help the depression as well] and possibly start treatment [rituxan] next fall if needed.

Well, that brings you all current as he had the transfusion today. I'll find out more about his initial treatment. We are going to leave Tues. to go North for the summer, God willing- Thanks again, Teri

[Jen Moreno]

Thanks for sharing Tom's history - it's amazing how much we can learn from reading about the history of the disease!

My hubby is a Vietnam vet and was sprayed with Agent Orange - it took almost 30 years for NHL to develop, but here we are!

He also has had heart palpitations (a few epidodes each month) but tests haven't shown anything serious so they most likely are benign. Probably a residule from CHOP he received in 1999 (since that's when they began!)

When "up north" are you going?

[TeriTom]

We're leaving Tues. for Idaho, Montana and Canada! Looking for that perfect spot on a lake somewhere. I'm not to concerned about being away from Toms doctors here because the Doctor that treated him the entire time is in Boise. Hopefully I'll be able to have acsess to a computer somewhere along the line! I'll be thinking of you all.

[pickle]

Hi Teri,
That must be pretty convenient to have your internest and the oncologist in the same family! It sounds like Tom's lymphoma does a lot of waxing and waning all on it's own, but I have heard that Rituxan does keep on working like that little energizer bunny!
Glad you joined our group, but sorry for the reason.
Pickle

[Cathryn Osborn]

Hi! Teri,

Welcome to the board, but sorry that you had to join us! Boy! Tom sure has been through a lot! But sounds like he had good care along the way, though. Lymphoma is a fickle beast, isn't it? We learn as we go. This board is a wonderful source of information, encouragement, solace and friendship! You have found the right place!

Keep us up to speed on Tom, and I wish him the best!

Live well, laugh often, love much!
CathyO

[Sandy-02]

Welcome to the board.We are here for you

[salli]

The tougher Allan's nhl symptoms got (sweating, fatique etc.) the more erractic his heart beats became. This last time just before the rituxan tx we had to run back and forth to the cadiologist as well so he could straighten out that stuff as well. It did work well but I wouldn't let Allan go so long again without seeking tx.

[swimmindolphin]

Welcome to the board...this place is full of warmth and support. We've all been through it one way or another and if you have and questions or need any help-i may not be the one to answer it-but the ladies and gentlemen in the support group are amazing.
Please keep us posted-our prayers are with you and your family!

[anjou]

Welcome!! NHL sure is a strange disease-- thanks for sharing Tom's history.

Nice to have an internist with a direct line to the onc!!