Below are Joanne's journals as posted to the NHL Cyberfamily support group. Not included are the replies from the various support group members.

CHAPTER ONE - TIME FOR AN SCT
Sent: Friday, February 21, 2003 9:04 PM

Yesterday I found out that I had relapsed. PET scan revealed new activity in the abdomen and the CT scan confirmed the growth of @ 1.4cm for each node since December 2002. My oncologist has made the recommendation of ICE Chemotherapy; I don't think I have ever seen that on this board, for 3 or 4 days in the hospital.

An international expert in the treatment of breast cancer, lymphoma and Hodgkin's Disease, John Glick, M.D., believes in a personal touch.

Then come home for @ 2 weeks and then return to the hospital for what they are calling High Level Chemotherapy and transplanting my stem cells that were harvested in December 2002, requiring me to stay in the hospital for 3 to 4 weeks.

I will be searching through the archives this weekend on previous postings regarding the SCT. I am interested in knowing how anyone felt during this period. Also, if anyone has had ICE Chemotherapy I would appreciate any feedback on that as well.

The oncologist is scheduling a full body PET Scan before starting the ICE Chemotherapy. Then will run additional test before the High Level Chemotherapy, such as the gaited heart scan, repeating CT Scan, PET Scan and a few others I forgot since I was shocked at relapsing only 2 months after I had achieved partial remission.

Thanks for listening and I appreciate any information, tips, and suggestions on my upcoming treatment.

Saturday, February 22, 2003 10:55 AM

Greg
You were the first person I thought of when the doctor gave me the news. In fact, I told the doctor about the NHL Group and he was fascinated.

I remember all too well your experience and will be looking into archives for info on SCT and ICE this weekend.
I have one question for you. I know you had your computer in the hospital and were logging in daily, so that tells me you did feel well enough to do that. I am a similar creature, meaning I take my laptop into hospitals and check emails and surf the net. By profession, I am a webmaster/senior programmer and analyst who is obsessive. Now for the question, while in the hospital do you think I will be able to work? I know people out there will be saying why she is considering working while being in the hospital. To be honest, it helps me in dealing with the treatment and I like staying busy.

Keep in mind I worked full-time through my first 6 treatments of CHOP x Rituxan. I was flat on my back for the 1st treatment but by the third I was back to my usual routine. I did take a leave of absence for the last 2 treatments of CHOP x Rituxan. I wanted to spend the summer with the kids. But even then I felt like working.
I just want to prepare myself and my work before treatment begins. I appreciate all the help you and others have given me. I will get through this, I am a strong person. I just have an obsession about organizing things. It's me!

Thanks once again Greg for your pearls of wisdom!

Saturday, February 22, 2003 11:13 AM

Steve,
Thank you for sharing! I am hearing nothing but good things and that is very encouraging. Yes, I have been called back into battle, but I know feel it is a battle worth fighting and will come out the victor!

Saturday, February 22, 2003 10:55 AM

I have one question for you. I know you had your computer in the hospital and were logging in daily, so that tells me you did feel well enough to do that. I am a similar creature, meaning I take my laptop into hospitals and check emails and surf the net. By profession, I am a webmaster/senior programmer and analyst who is obsessive. Now for the question, while in the hospital do you think I will be able to work?

Saturday, February 22, 2003 2:09 PM

Greg,

I appreciate your being so candid. You are the "Guru" of this board and I take your words to heart.

I have printed out several journals that have been written during SCT, including yours and reading through each one to get a sense of what to expect. I know everyone is different and everyone responds differently. But this is new territory for me and I would be a foolish if I didn't admit that I am scared.

A part of me wants to put a list together of all the things I have to do before going into the hospital and getting everything done. Similar to what one does when going on a trip. However, this is not a vacation, it's my life, a life with 3 children, a husband, career, loving mother, sister and countless friends and family that all want to help me. It's very difficult for me to ask for help. I have always been the doer, so to speak, tough and ready to take on the world. Then there is the other side of me that just wants curl up in a ball and cry.

You know I have spoken to many cancer patients who have warned me of the "why me?" question. I never really had that period, for me it has been a "why not me?" I saw Sharon Osbourne on MTV say something that made a great deal of sense. She stated that, "When things are going so good you know something has to happen." She referred to her colon cancer as another bump in the road that she would have to overcome. I feel the same about this blasted NHL.

Saturday, February 22, 2003 4:59 PM

Mark,
An international expert in the treatment of breast cancer, lymphoma and Hodgkin's Disease, John Glick, M.D., believes in a personal touch.

I live in Buckingham, PA and now have Dr. John H. Glick of the University of Pennsylvania as my primary oncologist. I have inserted a brief bio on him; it's in html, so some may not see it if your email does not allow for html. I apologize for the html; it's the computer geek in me.

I like how direct and to the point you are about lymphoma. You are correct in saying the second time destroys the denial. I had 2 glorious months of nothing cancer related, no scans, injections, treatments, blood work etc. Then bam, like Emeril would say, I find out I have relapsed. There is no denying it now.

By the way, I did have my HIV test and checked out ok. I thought that was for my benefit too. :~)

Once I go in I will post the address. I, like others, would like to receive cards during my stay. How did you all deal with being in the hospital for so long???? And with children. I have seen posts of some of the members and am astonished by your strength and support you have received from family, friends and even members of this board.

Life does throw you some curve balls every now and again but it also gives you some precious gifts.

Sunday, February 23, 2003 12:18 PM

Mark,
You have touched so many bases in your email. I have to now absorb everything you have written. I appreciate your sharing your experience with me. Giving up control is one hurdle I will have to get over.

On another note, hey maybe I will have sex in the hospital too. You will have to look at my journal during the SCT to find out.

Thanks again!!

Monday, February 24, 2003 8:18 PM

Greg,
What is the difference between autologous vs allogeneic? I am using my own stem cells that were harvested back in December. As for my age, I am 39.

During my CHOP x Rituxan I did very well. I continued to work during those treatments and had no infections. Also did not experience any nausea only fatigue.

Wednesday, February 26, 2003 5:46 PM

I had my full body PET Scan today and check into the hospital on Monday for my first ICE Chemotherapy. They said I should be in there for 3 to 4 days for that treatment. They are not quite sure how many I will need before the high level chemotherapy and SCT. It all depends on the shrinkage of the nodes. It looks like the high level chemotherapy and SCT will happen in late April or early May. I will keep you posted.

Thanks for listening!

Thursday, February 27, 2003 8:59 PM

Subject: Your not going to believe this one! Please give me your feedback on this one!

Just wanted to bring you up to date with what is happening with me. As you know I was to begin my ICE Chemotherapy on Monday, March 3rd with 2 to 3 more cycles of ICE Chemotherapy followed by the high level chemotherapy & stem cell replacement. Well this evening I received a call from Dr. Glick's office stating that he was canceling the treatment, which was going to begin this Monday.

Apparently, Dr. Glick and his assistant Dr. Maillard met with the board of oncologists at Penn and discussed my case and treatments that were used in similar cases and the outcome of the treatments. It appears that there are other options to consider and they want to present them to me this upcoming Thursday. One of the options I believe will be the use of Zevalin. I will keep you informed of my meeting and which path of treatment they recommend

Thursday, March 06, 2003 7:26 PM

Zevalin is the treatment. My oncologist just called since I need to get Zevalin pre-approved by my insurance company. He stated that I will receive a low does of Rituxan and indium, tracer dose and have images taken 1 week prior to the full treatment. Then return 2 to 3 days after to see that I have a good uptake and return on the following Tuesday to have the full treatment.

Thursday, March 06, 2003 7:53 PM

Zevalin is not an experimental therapy. It's an approved therapy treatment and the doctors don't think I will have a problem with the insurance company. The pre-approval is need because Zevalin is so expensive. I had to have my peripheral stem-cell harvest pre-approved before having that procedure done. It my insurance company Aetna US Healthcare and the type I have is called QPOS. I call it the glorified HMO. I have a primary doctor, who happens to be a very good friend of mine, who provides referrals for me. I don't have to necessarily get referrals and can choose to go outside the network without a referral; however I will have to pay a significant amount of the medical bill.

Now most HMOs capitates you to certain specialist and hospitals, well my very good friend gives me referrals to any doctor or hospital I may need to go to. He so nice to me and I let him know it often!

CHAPTER TWO - ON WITH THE ZEVALIN
Wed Mar 12, 2003 2:32 pm

I spent last night in the emergency room, yet again. Seems the nodes in my stomach wanted to make sure I knew they are there. I was in excruciating pain and was given morphine and sent home with a prescription. However I did find out that my bone marrow involvement is 5% and we are a go for Zevalin. Now all I have to do is manage the pain until the treatment which should be within 1 to 2 weeks.
Sunday, March 16, 2003 9:33 AM

On Tuesday, March 18th I go down to the hospital of U of P, I will go in the hospital, as an outpatient, and they will administer Rituxan, a targeted drug, along with a tracer drug (radioactive isotope). They will use a gamma camera to ensure the medication is going to the nodes and attacking them. I will repeat the gamma scan 2 to 3 days later to see if it is still working. Then if everything is doing what it's suppose to do then I will go to U of P and receive a large dose of Rituxan followed by the Zevalin. It's a 1 day procedure and that's it. In about 3 months they will repeat the CT & PET Scans to see where I am at. The doctor feels strongly that this could but me into partial/complete remission.

The side effects of this procedure is nothing like chemo. I will not loose my hair and I only need to worry about my blood counts dropping and may require blood transfusions.

Tuesday, March 18, 2003 6:16 PM

Today I received 488mg of Rituxan and was injected with a small dose of Zevalin (Greg the Zevalin was delivered today from Canada) with the tracing element and not the therapeutic element. On Thursday, I will have images taken by a Gamma Camera to see if the Zevalin is working and attacking the nodes. Apparently Zevalin attaches to the Rituxan and that is why they use a low does of the Zevalin with tracing element but not the therapeutic element. If for some reason the Zevalin does not work, the doctors believe the Zevalin will work, then in that case they will then inject me with another drug mostly like Bexxar with a tracing element since it is iodine based and then repeat the Gamma Scan. Zevalin and Bexxar work the same way, the only difference is their bases..

I will keep you posted! Thanks to all of you who have sent me wonderful messages. I appreciate every single one!

March 20, 2003

I had my gamma scan today and it showed an excellent uptake with the Rituxan with Zevalin, meaning the Rituxan and Zevalin tracer is attacking my nodes. So this Tuesday, March 25th I will be receiving a full dose of Rituxan followed by the Zevalin. Reactions/side effects such as drops in blood counts do not show until 3 to 4 weeks after the Zevalin...
I will keep you all posted and thanks to all of you for your words of encouragement.

Tuesday, March 25, 2003 7:09 PM

The gamma showed significant uptake in the test performed last week and since the uptake was so good he feels I should not have a problem achieving remission. So after a quick check up I was sent over to receive Rituxan 487mg and then went to Nuclear Medicine to receive the Zevalin.

Greg you are going to like this one. The nuclear medicine doctor comes in and I notice a large group outside the room I am in to receive my Zevalin. The doctor asks me if I would mind having the students observed my case than just read about it in a text book, so agreed to let all 20 medical students come in to observe. The medical doctor went over the specifics of my case and asked a few questions directed to me. Most of the students looked bored, only 2 asked anything meaningful. However, my mother & I fired off questions left and right and he was beginning wonder who we were and how much information we knew about monoclonal antibodies etc. etc.

In the end I confessed and told the Nuclear Medicine doctor that my knowledge came from being a member of the NHL board on yahoo.

I feel fine; the only thing bothering me is my allergies and asthmas. So my oncologist put me on Augmentin and a med. Dose pact to be safe. I don't see him until April 3rd and no CT or PET Scans until 3 months.

Wed Mar 26, 2003 2:40 pm

Subject: RE: [NHL] Zevalin similarities to BEXXAR?
Posted to the NHL list by the Webmaster

I hate to be picky but I am a stickler for the finer details.
Many people think that Zevalin is just Rituxan with the Yttrium added. That isn't quite true though.
Rituxan is a chimeric antibody. (Chimeric=made up of parts of different origins) It is made by taking a mouse antibody, chopping part of it off and replacing it with a human antibody. The reason for this is that if you inject a human being with mouse antibodies, your human immune system will react and eliminate it from your body since it is foreign. Rituxan wouldn't be much good if your body just eliminated it all in your urine after infusion. The human portion fools your immune system into thinking this is a normal part of your body so it does not get eliminated.

Zevalin on the other hand is 100% mouse (murine) antibody. It is the same one used for Rituxan but without the human part added. This is necessary because they WANT your body to eliminate it. Otherwise the radioactive part would hang around too long and do too much collateral damage.
Finding just the right mouse antibody was probably the biggest obstacle they had to overcome in developing Rituxan and Zevalin. They had to find one that wouldn't be eliminated too fast or too slow.

Now if I am going to be extra extra picky (well why not...lol) I should correct myself and say that the antibodies used aren't really mouse antibodies. They are antibodies taken from the ovaries of Chinese hamsters. I wouldn't want anyone to get that detail wrong :-)

Fri Apr 18, 2003 11:02 am

I had my treatment with Rituxan & Zevalin on March 25th. Both of these drugs are targeted, meaning they attack monoclonal antibodies and Zevalin has a radioactive isotope that attaches to the Rituxan to radiate the cancer cells and hopefully kill them all. I am in week 4 1/2 of the treatment and the drugs stay in your system for 3 to 4 months and work slowly, which is beneficial to me since I have indolent (slow growing cancer) Non-Hodgkin's lymphoma. So as the cancer cells mature the Rituxan and Zevalin will recognized them and zap them.

I am getting close to what the doctors consider the "danger zone" which is between weeks 6 to 9. That is usually when all blood counts drop and I may require a transfusion. My platelets have already started to tumble as well as my white cell counts. Yesterday my platelets were at 88 and I believe 150 is considered the norm. The doctors have put me on Bactrim as a precautionary measure..

Greg please feel free to correct anything I have written since you are the Guru of the board.

Thanks again I will continue to keep you posted on my adventures with Zevalin.

Sunday, April 06, 2003 8:25 PM

I went and saw the oncologist for the first time since receiving the Zevalin. So far things are going well. The only problem so far has been my abdominal pain, since most to the nodes are in my stomach, fatigue and some nausea. They did run blood counts on me and my lymphocytes were low so they prescribed a low does of Bactrium. I was told that the worse is yet to come. He believes all of my blood counts will drop and most likely during my 5th or 6th week after the initial treatment.

It is strange to feel bad when you outwardly look well to other people. Thanks for listening to my complaining.

Sunday, April 06, 2003 8:25 PM

I went and saw the oncologist for the first time since receiving the Zevalin. So far things are going well. The only problem so far has been my abdominal pain, since most to the nodes are in my stomach, fatigue and some nausea. They did run blood counts on me and my lymphocytes were low so they prescribed a low does of Bactrium. I was told that the worse is yet to come. He believes all of my blood counts will drop and most likely during my 5th or 6th week after the initial treatment.

It is strange to feel bad when you outwardly look well to other people. Thanks for listening to my complaining.

Sunday, April 13, 2003 4:40 PM

I am going into my 4th week post Zevalin. Last week when I met with the oncologist and my lymphocytes low so he prescribed Bactrim to avoid pneumonia. Well, the antibiotics did keep that particular strain of pneumonia away however, I ended up spending this past week in the hospital with another strain of pneumonia. Now I am taking both Levaquin and Bactrim to fight this thing and my white cell count was 2.9 two days ago and are continuing to tumble. I oncologist did warn me that in the 4th week my counts would start to fall and may require a transfusion. I see him this Thursday and will let you know what the outcome is on my visit.

Thanks for listening to my complaining. You are the best group of people on this board!

Mon Apr 14, 2003 9:45 am

The reason I got the pneumonia was due to low lymphocytes. The Zevalin caused the lymphocytes to drop and in addition to that my white blood cells, red blood cells and platelets counts are all dropping. I will may need blood transfusions or Nulasta or Procrit. Just this week my white cell count went from 3.8 to 2.7 and is continuing to drop. I will see my oncologist this Thursday and he will decide whether I will need a transfusion or shots. Nuopogen etc.

I think you can still get this type of reaction from Chemo as well. I do not think it is isolated only to Zevalin.

Hope I answered your question.

Fri Apr 25, 2003 11:13 am

Greetings to all! This message is for all the people who have asked me to keep them posted on my experience with Zevalin.

Yesterday, I had my meeting with my oncologist. My platelets were at 11 so a transfusion of platelets was on the agenda yesterday. My white cells were at around 2.3 which is not too bad and my red cells were down as well, so I received Procrit to help build red cells and Nulasta to help build the white cells. My lymphocytes are still low so they have me taking 3 Bactrim pills a day but only on Monday, Wednesday & Thursday. I cannot figure that one out, maybe someone on the board has used Bactrim this way and can explain why the dosing is this way.

In all honesty, I did feel quite fine yesterday only a bit fatigued. I drove myself with my daughter Chelsea, who is 10, down to the hospital for my checkup since it was "take your daughter to work" day here in the states. I fully expected to run in to see the oncologist and have my counts checked and be on my merry way. NOT! I have learned my lesson. The treatments and I come first!

On a good note, all of my abdominal pain is gone. The oncologist gave me 2 thumbs up on that one since it's a good indicator that the Zevalin is working. Its quite unlike him to give any patient 2 thumbs up, its not his character at all so I was very excited by his reaction.

And for those of you, who are curious, yes I did go to work. I know I am crazy, you don't have to tell me. But after spending 6 hours down at the University of Pennsylvania, I had to do something, so I ran in answered a few emails and returned a few phone calls then left and finished working at home. Even though I did go into work, I did put myself first by leaving after being at work for 45 minutes. The old me would have stayed working well into the night. I am making progress on this issue.

The critical period is weeks 6 through week 9 when all counts drop significantly. In the meantime, I have been told by the doctor to avoid certain foods and public places, such as movie theaters, sporting events etc. As for the food restrictions the oncologist stated that if I cannot cook it or peel it then I cannot eat it. Additionally, I am to go to the emergency room for any fever that is above 100 and report to the emergency room should I start to bleed, for example nose bleed or bleeding in the mouth. This was new to me! I did not know that if your platelets are low you can actually bleed out in your mouth.

Now I have a question for the group and would like your feedback on this one since I am having a hard time deciding what to do. On May 11, my husband is graduating from a local university with an MBA. I will be in week 7 of my Zevalin treatment. Do I go to the graduation or not? If the day is nice it will be held outside in the football stadium and if it rains it will be held indoors. I will also ask the doctor his thoughts as the date gets closer. But how do you not go to your husband's graduation? I am torn yet again.

Thank you for listening and I hope you enjoy these updates. If you want me to stop the updates I can if you do not want to see them, just let me know which you prefer.

You are a wonderful group!

Fri Apr 25, 2003 11:33 am

Judy,
Now your making me nervous. I had my first platelet transfusion yesterday. My platelet count was at 11.
Stupid me decides to shave her legs the night before seeing the oncologist. Cut myself and was bleeding all over the place and wrote it off as a side affect of the Motrin I am taking. Its a learning curve for sure!

Now I will be more aware of what is going on and keep observing myself for anything unusual.

Thanks again,

Sun 4/27/2003 4:44 PM

Judy,
Thank you for shouting at me! You know the doctor may have said something and it probably went in one ear and out the other. When ever I go to my oncologist so many things are going on that I really should take notes since I don't always remember everything that was said to me.
I appreciate your being so candid and I will be seeing my doctor on Thursday and this time I will be taking notes.
Tomorrow I have to go to have my counts checked. He checks them twice a week now that I have entered the "Danger Zone" which is weeks 6 through week 9.
Thank you again for your message.

Monday 4/28/2003

Never a dull moment around me lately. Had a nice relaxing weekend and went to work feeling pretty good but a little light headed. On Monday's, during my lunchbreak, I go to a local lab for my blood work and they fax the counts down to my oncologist in Center City Philadelphia, PA (University of Penn). Then I repeat all labs on Thursdays and see my oncologist everyweek on Thursdays.

Well about an hour after having the lab work done I got a call and find out that my platelets are 11, white cell counts 1.6, red cells at 2.71 and hemaglobin at .83. I was told to get to the hospital for a platelet transfusion.

I get to the University of Pennsylvania and the platelets are there ready and waiting for me. Before they begin any transfusion they take your vital signs and I find out I have a fever, a mild fever of 100.5 but to the doctor it is a big deal. He now has me on Bactrim and Cipro and some tablet to dissolve in my mouth since I have what appears to be the beginning of Thrush. While the transfusion was happening I had to have blood cultures which filled two bottles (the size of wine bottles you get on an airplane) to check for any infections. They also took another tube of blood for cross typing since this Thursday I will not only receive more platelets but also blood

Today was a hectic day and it was the first time in a long time that I actually broke down and cried and I didn't know why. Perhaps it's the lost of control I have over my body, or not knowing what is going to happen next or just overwhelmed by the need for blood products so close together. Anyway I had my crying jag in the car on my way home from the hospital and shared my crying with my mother who has been my best friend in getting through this ordeal.

I will let you know what happens with my meeting with my oncologist this Thursday. I just have to keep telling myself that you only have to get through weeks 6 through 9 and then I should be in the clear.
Thanks for listening and I appreciate all the wonderful responses I have received from members of this board.
Greg I cannot that you enough for putting my journal together on the website. I hope it helps someone one day!

Friday May 2, 2003

Yesterday, I had my appointment with my oncologist and all my blood counts had dropped. White Cell Count 1.3 Platelets 13 Hemoglobin 7.9 HCT 23 I needed 2 bags of red blood cells and 1 bag of platelets transfused. Additionally, they gave me more Procrit, to build red blood cells. I am scheduled to have 2 more transfusions next week. Now that my immunity system is down, Dr. Glick has restricted me to my house for 1 week, meaning I cannot go to work and he will evaluate this weekly. Additionally, I have to watch what I eat and stay away from any germs or sick kids. If anyone gets sick here, they either have to go to a hotel or I have to get into a bubble! Kidding but I do have to avoid anyone who is sick. I am working from home during this time since I do feel well. Just have to be isolated for this short period, which is normal. The drug Zevalin is doing what it has to do in killing the cancer cells but taking some of the good cells with it. The reaction was expected to happen between weeks 6 to 9 and I am in week 6. I had the Zevalin administered on March 25. My reaction was expected but, my counts dropped lower than the average, so I was told. The only reactions I have had in addition to my counts dropping is some fatigue, lightheaded, nausea and now Thrush. The doctor gave me Mycelex 10mg Troche (can someone tell me what that means) tablets to dissolve in my mouth to help with the Thrush. He also gave me Compazine & Zofran for the nausea. The Zofran is to be used if the nausea is really bad. Also, the doctor noted how depressed I was yesterday and on the verge of tears, so he sent in a therapist to talk to me. The therapist consulted with my doctor and decided I should try Klonopin .5mg 3 times a day to help with my anxiety. They said it will also help the nausea. Does anyone know anything about Klonopin? On Monday, I have another transfusion and then on Thursday I see the doctor again and have another transfusion. I will let you know how that appointment goes.

Day 46, May 8, 2003

I had my weekly checkup with the oncologist. Yesterday my white cells were 3.0 and today they dropped to 1.3. My hemoglobin, red cells and platelets were all borderline, so no transfusions today. The doctor said during this period he fully expects my counts to go up and down for the next 2 weeks. I am still taking Cipro and Bactrim as a precaution and was given a shot of Procrit.

As for my husband's graduation, the doctor told me not to go. He said have a relative tape it for me. He said if I went I risk getting an infection, so I will be staying home.
Also, next week I go my 1st CT Scan since the Zevalin injection. Everyone keep me in your prayers and cross your fingers for me. Then the following week I will have a PET Scan.

I feel much better than I did last week. For some reason, I was extremely emotional about the transfusions and the chemo like feeling I had last week. I was fatigued, stomach was queasy and I was lightheaded. I hated how I felt and only wanted to get the Zevalin out of my body. It was horrible but it has past. Like I said, "I am feeling much better now that I can see the end of the tunnel!" One week of hell is worth it, if it puts me into remission!
Monday May 12, 2003
On Saturday, I was hospitalized for with a fever of 103.3. They are not sure if it is pneuomonia again or something else,so they are running all kinds of texts. I have had 2 bags or hemoglobin and to two bags of platelets transfused. I a hoping they figure it out soon so I can be home by Tuesday or Wednesay.

Friday May 16 2003

My visit went fairly well with my oncologist yesterday. It appears that I am on the back end of the "danger zone" and my counts are starting to come back on their own, so no transfusions yesterday only 1 shot or Procrit. My white cell count was at 2.5 so I am still taking Bactrium 1 tablet Monday, Wednesday, Friday and Amoxicillin due to the pneumonia.

I had my 1st CT scan post Zevalin yesterday and it showed moderate decrease in the lymph nodes in the abdomen. On Monday, I will be going for my 1st PET Scan post Zevalin and that should be more revealing than the CT Scan. They said they will repeat both the CT & PET in 2 months when I should have achieved the maximum benefit from the drug, so I am keeping my focus on only good things in 2 months from now. If not, I am sure the doctor has some more tricks up his sleeve.

Wednesday May 21,2003

 had my PET Scan on Monday and today I recieved the results. Unfortunately, it appears that I am not responding to the Zevalin. My oncologist called me with the news and wants to meet tomorrow to discuss everything, including repeating the CT & PET Scan in a few weeks to see if there is any change. But my gut feeling is he will be suggesting a Stem Cell Transplnt.

I knew something was up because within the past few days my abdominal pain returned. I will keep you posted on the outcome of my meeting tomorrow.

Joanne M. Sonnelitter

Friday May 22, 2003

I met with my oncologist today and the PET Scan shows no evidence of the Zevalin working so he has come up with another approach. Chemotherapy followed by a vaccine- it is a clinical trial and is labled

UPCC 05402 A FEASIBILITY/PHASE 1 STUDY OF FLUDARABINE-CYCLOPHOSPHAMIDE WITH IMMUNE SYSTEM SUPPORT USING CD25 DEPLETED AND CD3/CD25 EX VIVO COSTIMULATED AUTOLOGOUS T-CELLS IN PATIENTS WITH PREVIOUSLY TREATED RELAPSED/REFRACTORY FOLLICULAR NON-HODGKIN'S LYMPHOMA

HERE ARE THE STEPS.

• 1. LYMPH NODE PATHOLOGY6 REVIEW SEVERAL BLOOD TESTS - INCLUDING HIV AGAIN CT SCANS BONE MARROW BIOPSY PREGNANCY TEST LUNG FUNCTION TEST SKIN TESTING TO MEASURE IMMUNE SYSTEM RESPONSIVENESS.
• 2. Prior to receiving the chemotherapy, I will undergo a single outpatient leukapheresis procedure (the process of collecting white blood cells from the circulating blood. The cells collected from this procedure will be used to isolate and grow my T-cells in the laboratory. T-cells grown in the laboratory may be reinfused (put back into my system) 28 to 42 days after completion of the chemotherapy.
• 3. I will recieve chemotherapy for 3 days every 28 to 42 days for 4 cycles. The drugs include Cyclophsphamide (Cytoxan) and Fludarabine (Fludara). I had Cytoxan when I had my CHOP x Rituxan. I don't know much about the 2nd drug so if anyone has any information on it I would appreciate your sending it my way.

I will receive antibiotics to prevent infections from damage to the immune system caused by chemo. I will also received meds for nausea, fluids by IV to help eliminate waste products of lypmhoma cell destruction, and blood cell growth stimulators to help with low blood counts from the chemo.
I will have CT scans between cycles 2 & 3 & 4. Two months after the T- cell infusion is completed, I will have skin testing to measure immune system responsiveness. Also another CT scan and bone marrow biopsy. I will be tested every 3 months and then every 6 months for 4 years if all goes well.

My opinion is to go for it since I had my stem cells harvested and are in the deep freeze. Had I not collected my stem cells this would not be an option for me.

I will keep you posted on this treatment if you would like. I would like to hear some feed back on this new procedure.
Thanks for listening and I am praying that this one will work for me. A break would be nice!