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Joanne Sonnelitter's SCT journal

 

Joanne Sonnelitter's SCT journal

August 10, 2004 Mini Allo Day -10

Today I finally received my PICC line for the treatment. Also, had a horrible migraine and to make matters even better, the ladies will appreciate this, I got my period today! My luck better improve! 

Tomorrow I start with CAMPATH: A major side effect of Campath is an allergic reaction that occurs during the infusion. This can result in chills and fevers, and occasionally difficulty breathing, low blood pressure or high blood pressure. If the reaction is severe the infusion may need to be held off or discontinued. To prevent and limit this reaction I will be treated with medicines such as Tylenol and Benadryl prior to Campath, and may even receive steroids. Campath will also weaken my immune system (an intended side effect) and increase the risk of infections. It will contribute to lowering my blood counts and the need for blood & platelet transfusions. 

Occasionally patients may develop bone or muscle pains (treated with pain medication), heart rate abnormalities (treated with medicines if needed), nausea, vomiting, rashes and itching, or other possible side effects. I will let you know how tomorrow goes. I did find out that on day -3 they will remove me from my room and strip the room down. Sanitize the entire room with bleach, which they say takes 3 hours to do. I will then enter the room which will be tented and take a shower using a special sanitizing soap. On that day they will begin the allo cleansing and I will be isolation. Anyone who wishes to visit me during that period will have to wear a surgical gown, mask, hat and gloves. I am looking forward to that!?!?! That is all for today,

 

Thursday, August 12, 2004 Joanne Mini-Allo Day -9

I was unable to write an email last night, due to the liquid Benadryl, that stuff always makes me sleepy. Before starting the Campath I had and still have problems with my sinuses and nausea. After the migraine the other day I continue to have a headache everyday. I am wondering if it is not stress related. Anyway, I did receive the Campath yesterday and all went fairly well. I received 3 mg over the course of 8 hours. I will receive Campath for a total of 5 days and each day they increase the dosage. As for the side effects I experienced, last night about 5 hours into the infusion I ran a fever of 101.7 and had the chills. Additionally, my blood pressure went to 201/113, they gave me Demerol to lower my blood pressure. Today they are going to repeat the Campath and if the blood pressure goes up they will use the Demerol again. If it gets worse they said they would use steroids to control the blood pressure. These were expected side effects.

 

Friday, August 13, 2004  Mini-Allo Day -8

I am not able to write about my experiences until the next day. They start the infusions at 3pm or 4 pm and end at 12 or 1 AM. I am not going to do emails that late. 

Anyway, yesterday was a fairly good day. While I was detached from the IV pole I was able to walk around the floor, get on the computer and do some exercising. They are very big on exercising here. They gave me a set of three exercises that they want me to do in addition to walking the halls. Also found out that when I go into isolation they are going to bring a bike into the room and expect me to ride it 20 minutes each day. I don't even do that at home. 

Then came 4:00PM, I was hooked up to the Campath, 10 mg, and was on it until 12:30AM. I ran a fever of 102.9 and had the rigors or chills from 8:30PM until 11:30 PM. I had 10 blankets on me and was under a heat lamp. They gave me Demerol to control the rigors as well as my blood pressure. I had no high blood pressure last night, so that is a good thing. As for other side effects I am experiencing, headaches, nausea and stiff neck. The doctors attribute that to the rigors from the Campath. 

On another note, the hospital provided me with a web camera so I can see my kids from my hospital room and they can see me! Amazing, at least I will be able to see my son on his birthday August 18th. They said they would have a little party for him here at the hospital before I go into isolation. They have been very good to me and offer group session, bingo, arts and crafts etc. They want to keep you busy. As for today, Day -7, I am up and about and doing my thing. Running around the floor and doing my exercises so I don't get in trouble. They really do not want you staying in bed. I should be good for the remainder of the day, until I get connect to the Campath this afternoon. I will update the board tomorrow with any reactions I have experienced.

 

Saturday, August 14, 2004  Mini-Allo Day -7

Yesterday went well during the day. I was up and about and roaming the hallways, doing my exercises and working on the computer. Then at 5pm I was connected to the Campath. The side effects last night were fever, headache and the rigors which they give Demerol to stop the chills and regulate your heart rate. Other than that I was fine. I did get to see the opening ceremonies of the Olympics last night. My ANC numbers are started to fall, they are at 1700 and once it gets to 1000 its time to start wearing a mask. I will keep you posted.

I forgot to mention the dosage of Campath I received last night. Last night I received 30mg of Campath over the course of 6 to 8 hours. I will have the Campath 30mg again tonight. Then on Sunday, I will receive Campath 30mg and will also receive Fludarabine.

 

Sunday, August 15, 2004  Mini-Allo Day -6

Yesterday I received 30mg of Campath at 5pm and was infused over the course of 8 hours. I really had no reaction during the transfusion. About an hour after the infusion I ran a fever of 102 and was given Demerol to control the rigors.

Prior to receiving the Campath, I was fine and was able to walk around the hospital floor, play some games on the computer and do some reading.

 

Sunday, August 15, 2004  Mini-Allo Day -5

I woke up this morning with a terrible migraine and nausea. I had no desire to eat breakfast or lunch. (The food here is awful). Today they started my treatments early. I received: Fludarabine & Campath, my last day for Campath. Fludarabine side effects include: lowering of the blood counts, infections, nausea and vomiting. Other side effects include fatigue, loss of appetite, and weakness. Serious infections can occur. Neurologic impairment, including confusion and disorientation, has occurred in higher doses. In addition to my headaches, nausea and loss of appetite, I am experiencing something new. I have bad sinusitis and post nasal drip. Well now that my platelets are low my post nasal drip is bloody. The nurse says that it is due to the low platelets and will be giving me a saline nasal spray to help with the dryness. The Fludarabine infusion went well. Nothing earth shattering happened and I am connected to the Campath as I write. I don't expect anything different in terms of a reaction than what I have already experienced.

 

Monday, August 16, 2004  Mini-Allo Day -4

Last night I had no reaction to the 30mg of Campath I received. No fever, rigors etc. I also received Fludarabine, with no reaction. Today should have been an easy day. I only received Fludarabine, but had a migraine headache the entire day. The nurses keep saying its from the Zofran but I never recalled getting a headache from Zofran before. I noticed Sandra told you about her beautiful view of a Japanese Garden. The view I have outside my window is the dormitories of the University of Pennsylvania. The building was built back in the late 1700's. Its a beautiful building. To bad I don't have binoculars! Just kidding. That's all for today,

 

Wednesday, August 18, 2004  Day -3 for Mini-MUD

Joanne asked me to update her progress. On day 3 they gave her 30 MG of Fludarabine and began Cyclosporine (250 MG for 24 hours). The cyclosporine is used for anti-rejection and to prevent GVHD. Fludarabine is pretty well known to most of you. It is used to further suppress the immune system prior to the SCT.

I am updating you as Joanne has had a tough day with nausea and vomiting. They gave her Zofran and Ativan (sp.?) to combat this side effect but she is still feeling under the weather (to be expected). Additionally she has no appetite but her headaches have moderated. All of this is to be expected as the chemo "cocktail" continues to have an increasing effect.

If Joanne has not done so, I want to thank all of you for sending cards and other messages of encouragement. They are important for her in helping her fight the good fight. I will probably post for her over the next few days. As such if you have any questions about her condition or treatment I will be happy to answer them as best I can. Regards to you all.

 

Dan Sonnelitter (Husband)

 

Thursday, August 19, 2004  Mini-MUD Day -2

Joanne went through another nausea/vomit filled day. These episodes tend to come in waves and she has periods of feeling ok but there is no food appetite. (I noticed that this is similar to Sandra's experience.) The dug therapy for the day was 30 mg of Fludarabine, 250 mg of Cyclosporine and 30 mg of Cytoxan (they also give her saline solution for hydration). The Cytoxan suppresses and weakens the immune system and helps prevent rejection of the donor cells. The side effects are nausea, vomiting and low blood counts (really just more of the same). This should be the last day for all of the chemo drugs and the only thing she will get on day -1 is the Cyclosporine.

However, the major event of today did not involve any drug taking or side effect management. It was getting kicked out of her room for 5 hours while they sanitized it to begin isolation. She is now in isolation in the room and we must wear gloves and gowns in the room. Everything had to be wiped down with alcohol wipes. She will be in isolation until her transplant has grafted and her blood counts are up. Regards to all.

 

Thursday, August 19, 2004  Mini MUD Day -1

Joanne received no chemo today as detailed by her protocol. Her nausea has eased up a bit. She did develop a fever of 101.6 F. They took blood cultures and believe she may be getting pneumonia but not conclusive. They put her on Metpron (sp?) which is an anti-biotic. Her liver enzymes have also become elevated but this is expected and due to the drugs she has already received. They have kept her on cyclosporine and I believe they will do so for the next week or so.

Unfortunately as the nausea has passed a new side effect has become prominent....diarrhea. This is too is an expected event. There has also been a noticeable increase in fatigue but with blood counts falling this is not a surprise.

Her primary oncologist confirmed that tomorrow she will get her infusion of donor stem cells (Day 0....let's get it on!). We expect this infusion to be done around 4 PM EDT. As they say "all systems are go" and really Joanne has done very well to this point. There are no unusual events to report and let's just hope it stays that way! Regards.

Dan

 

Saturday, August 21, 2004  Mini MUD Day 0

Joanne received her donor stem cells at around 4:20 PM (of course we all sang Happy Birthday). They infused 2 bags of cells over a 2-1/2 hour period. She was watched by 3 nurses and the floor oncologist for the first 30 minutes of the infusion to make sure she did not show any signs of an allergic reaction. They did give her benadryl before the infusion so she was rather drowsy during this procedure. As an interesting note to the procedure the donor cells were collected over a 2 day period just prior to her infusion. In fact the second bag was taken from the donor at only 11:30 AM the day of the infusion (nice and fresh!). Also of interest was that they have a check system to verify that the donor cells are for the right patient. All the nurses had to confirm to the oncologist that each bag match the patient. A good idea since those stem cells are on a one way trip!

As far as meds, Joanne started MENSA (which helps protect her bladder from the Cytoxin) and continues on Cyclosporine. An x-ray has confirmed that she has developed pneumonia. It is not a severe case as it is only in the upper area of the lungs. They have had her on anti-biotics and her fever has been jumping up to 102 F but Tylenol has pretty much kept this in check though. Also some of the fever issue could be coming from the chemo treatments.

Some additional notes to the procedure that I picked up from the nurses/oncologists attending Joanne:

 

  1.  Her donor is a perfect 10 out of 10 match for antigens. This is as good as it gets for a matched unrelated donor and in this case does not significantly increase the risk of the procedure.
  2.  Joanne's counts have not yet had a dramatic "crash". This is the hallmark of a "mini" in that it takes longer for this to occur since they use less chemo.
  3.  On an order of magnitude basis a "mini" will use about 1/2 the amount of chemo as a conventional SCT.
  4.  Joanne should begin producing her won blood again around day +14.

I will keep you updated and again thank you for the cards and well-wishes.

 

Sunday, August 22, 2004 2:33 PM Mini-MUD Day +1

Joanne has been up and down with fevers today. She spiked at 103 F which was somewhat impressive. They give her Tylenol and the fevers drop to normal so the staff is not too concerned (this could be coming from treatment or slight case of pneumonia). She has also shown some elevated liver enzymes. They brought in a liver specialist (another doctor and a whole new set of jargon...Oh Boy!) that said so far this is normal but if she shows significant symptoms (rapid weight gain, stomach pain) they will treat accordingly. Their concern would be hepatitis. They did send her for a CT scan as a precaution but results will not be known until tomorrow.

Other than that everything has been as expected. Her counts continue to drop and they gave her 1 bag of RBC's. She has also been getting some strong headaches but the fringe benefit is that they treat them by giving her morphine. They do not want to give her aspirin as it might mask the fevers. When I found this out I told the nurse that I also was having a headache and perhaps I could also get some morphine. She said that was possible but I needed to be admitted first. I thought about it but let it drop for now.....I think I'll just have a drink.

Finally, Joanne wanted me to tell you that she will try to get back on line soon as she like to give the updates and hear from all of you. However, right now between the benadryl, morphine and low counts sleeping has been the order of the day. That is probably not a bad thing.

 

Monday, August 23, 2004  Mini-MUD Day +2

Joanne had a fairly calm day. Fever again jumped to 103 F but the Tylenol kept it in check. Fatigue has been increasing and she slept most of the day. Her blood counts continued to fall and they gave her 2 bags of RBC's.

 

Tuesday, August 24, 2004  Joanne M. Sonnelitter Has Died

I regret to inform you that Joanne M. Sonnelitter died at 11:08 AM on 8/24/04 of complication from pneumonia at the Hospital of the University of Pennsylvania. She had developed severe symptoms at around 1 PM on 8/23/04 and had been admitted to their ICU. The doctors there tried very hard to get her through it but her immune system was far too compromised from chemo therapy relating to her Mini-MUD.

Joanne fought until the end but her heart slowly gave out as her blood pressure dropped to extremely low levels. Joanne also fought a very courageous 28 month battle against follicular non-Hodgkin's Lymphoma. She had many treatments for the disease but never really achieved remission. She was currently undergoing a Mini-MUD SCT in an attempt to achieve a long term remission.

Joanne was only 41 years old and she leaves behind a husband and 3 children (14, 12 and 6) as well as her very devoted mother. She was a great wife, mother and daughter. I will try to link her obit if I can when it is published. She belongs now to the ages. God bless her soul, god bless our family and god bless all of you who are fighting this dreaded disease.

 

Daniel T. Sonnelitter (Husband)

 


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