As today is considered the "official" start of Steve's mini allo mud SCT, I am going to begin the journal now.
A little background, Steve was: dx in September 07, stage 4, numerous external nodes, 70% bone marrow involvement, as well as blood involvement. Sept 07-Feb 08 - 1 RHCVAD treatment, then 5 RCHOP, remission in Febuary 08. CT scan in Aug 08 showed relapse. Treated with Rituxan until June 09. July 0's9-Sept 09 - 3 RMINE Oct 09 - MUD mini allo SCT with Zevalin at MD Anderson Houston,TX (part of a clinical trial)
During the Rituxan treatments after relapse, MD Anderson began searching for a possible donor. 3 possible matches were found, all perfect 10/10, (actually, if I understand correctly, better 13/14). The RMINE was given to try and get him as close to remission as possible prior to the SCT. It worked, he had numerous tumors starting RMINE in July measuring 6 to 8 cm and all have shrunk. There are basically 2 tumors left that showed up on the PET/CT scan, both very small. The RCHOP, while no picnic, was fairly easy for him compared to the RMINE. While on RCHOP he was tired, he still worked and was not nauseated. RMINE was completely different, knocked him down totally. Severe gastro-intestenial problems, fevers, felt so bad could not get out of bed for 3-4 days after.
After chemo and prior to today, he has had numerous tests done, ekg, echocardiogram, pulmonary function, etc. He also had a new subclavian cath put into his chest yesterday. While the procedure did not hurt, it is sore today.
Today was day -14. He received Rituxan, 250mg, and the Indium Zevalin "tracer" dose. As he has received Rituxan numerous times, this was basically a non event. The infusion took about 4 hours. Zevalin was a 10 minute injection directly into his picc line. It was about twice the size of a Heparin flush, they push it in very slowly so that there are no reactions. He felt nothing, and had no reactions. So far, so good.
An interesting note is there are 2 other gentleman who are part of the same clinical trial, they will all 3 be on the same schedule, receiving the donor cells on Nov 10. We have met one man, a very nice man from Ohio. His lymphoma condition and experience was so much like Steve's it was amazing. Same symptoms, same spread throughout body, same time to relapse. He then had RICE with no response, and then did a clinical trial with bendamustine and velcade? and it worked. So should be interesting to see how the transplants progress.
Today we had a coordinated care meeting with several members of Steve's transplant team. This was to go over any questions or concerns before he is admitted inpatient next week. 2 nurses from the SCT floor were there, as well as our coordinators and advocate. Steve expressed his concerns and they tried to answer his questions. They gave us an overview of the basic schedule on the 11th floor (transplant floor at Anderson). Boy, are we looking forward to those 3:00am blood draws. Nothing like the EXACT middle of the night. Combine that with vitals every 4 hours, pump beeping, meds, and up to pee, trash changing, floor mopping, and he should be getting about 30 minutes of uninterrupted sleep each night!
He also met with an ophthalmologist for an eye exam. He has great vision, but was quite shaken after hearing all the possible problems that could arise after transplant. I have not read about too many GVHD vision problems on this site, so, we will just hope for the best!
Steve had another round of Rituxan today, and then the full Zevalin dose. Again, the full dose of Zevalin was just a ten minute injection into his line. So far, so good, no reactions or side effects from this at all. The only precautions we were told to take were make sure and wash his hands thoroughly after urinating, and sex must be with a condom for 1 year! It says in the pamphlet we received to avoid deep kissing as well.
He had a break this past weekend, no tests or treatments for 3 days, and got in a round of golf with our son. The weather here in Houston FINALLY cleared up and turned gorgeous! So it was a nice break because tomorrow he checks into the hospital. Fludarabine and cytoxan are up next.
The bag was all packed, but it was a no go. There are no rooms available at MD Anderson. Initially Steve was suppose to go on the 10th floor today, and then get moved to the 11th floor (stem cell transplant floor). But they just called and said it will have to be tomorrow.
The first chemo treatment of fludarabine and cytoxan was suppose to begin tommorow, so I hope we can still keep our schedule. Bummer, we were all psyched to go, but I guess someone needs the room worse today. We met with our stem cell doctor, Dr. Khouri, today. He went over a few "rules" with us regarding post transplant. In addition to the usual infection control and diet precautions, no sun for at least a year and a half. He said it can activate T cells and cause graft vs. host disease. No being around animals, including our dog. This also for a least a year. We had planned on this, but not for a year. No gardening, mowing the lawn, trimming bushes, planting, etc. Also at least a year.
I have read about these precautions on this blog, as well as other blogs, but the time frame seems far longer than anybody elses? If anyone has any insight into this I would appreciate it. This should be quite interesting as we live on 2 acres of land directly across the street from a horse farm. Oh well, something else to work out as this goes on. On a bright note, still no side effects from the Zevalin!
We got a room! Anderson is still packed, they had 50 emergency admits last night alone. It got kind of hairy today around 4:00 when we did not think we were going to get in and Plan B was starting to be discussed. I am not exactly sure what Plan B was, but talk of freezing stem cells started and that is when we starting getting nervous. All along we have been told that they need to be harvested the day before he is to get them. I know "things" can and do happen, but we have taken such care to try and make this "work" in all aspects and to make such a change because their was no room available????? But he is in, and chemo begins tomorrow only 1 day off schedule. The 11th floor staff seem WONDERFUL, very nice and accommodating. Steve is just looking forward to getting on with it at this point.
I know yesterday was -5, but due to the room problem, the transplant has been moved one day forward to November 11. So another day -5? Anyway, Steve began chemo today, Fludarabine and cytoxan. The infusions were fairly quick compared to what we are used to (Rituxan) just 3 hours for both. As of now, there are no major side effects, just a little nausea. After the horrible time he had with RMINE, he is a little freaked out waiting for the shoe to drop. Hopefully it wont, he could use a break. But the dreaded steroids returned, decadron. He has not had them in a while, and all I can say is WOW. It is 10:30 here, and he is just getting geared up, calling everybody, FULL of ideas, and just said he is about to go for a walk or ride the bike. And this is all after a sleeping pill! Steroids stink!
Never a dull moment though. I was at the hospital when I got a call from our alarm company in Florida saying the house alarm was going off. I was talking to my neighbor trying to figure out what was going on, when he noticed the water leak. Then they call from our condo here in Houston to say my son was stuck in the elevator (between floors) and the fire department was trying to get him out. Luckily they did, after an hour. Then, after a hug, I promptly say "what did you do?". Nothing Mom (of course) I was just "dancing". Hmmm, must have been some dance.
Nov 7 day -4 was the second round of 3 cycles of the Flubarabine/Cytoxan. The chemo was ok, but he does not do steroids well. Because Steve was so wigged out from the steroids and was up all night, they adjusted the dose. It has helped considerably. He is much calmer, and feels much better. No side effects, just a little nausea.
Nov 8 day -3 well today the shoe dropped, big time. He had the last round of Fludarabine/Cytoxan. Again, no problems, they again adjusted the steroids. After, he got ATG, or Antithymocyte Globulin (Thymoglobulin). He was pre-treated with benadryl and some type of steroid. The infusion took about 2 hours and on the last drip, he started shaking violently. It was very similar to what happened with Rituxn on the first treatment but seemed worse. They gave him Demerol, and the rigors stopped, but he shook for quite a while after, about 2 hours. When it stopped he was so sore all over. He said it felt like the flu, but worse. Then he spiked a fever, 100-101. This lasted a couple of hours until he finally fell asleep. He woke up about 10:00 throwing up, and spent the night throwing up. Not fun. And two more days of this. Hopefully it wont be as bad on the second dose.
We are back in the game! Round two of ATG went much better than 1. They stretched the infusion over 6 hours and pre-medicated before, and during the infusion. Steve slept through the first 2 hours (as much as you can when they are doing vitals every 15 minutes). But he got through it with only moderate chills which he held off by getting in the hot shower. They had just changed his cath dressing and he soaked it. The nurse was not happy about having to redo it, but hey, you gotta do what you gotta do. Same thing as yesterday, the chills started almost on the last drop. I guess this is common with ATG, our pilot friend from Ohio who is on the same protocol, exact same schedule, got his whole infusion without a single side effect, then got the same rigors and fevers as Steve did but 8 hours later.
Steve is up and about walking around and eating. Walking the floor is HUGE here, they drag you out of your room to do laps, to keep your lungs clear. The 11th floor at Anderson is all stem cell, and 5 laps around the entire 11th floor is 1 mile. Today he managed a mile when I left, and was going out walking again. Yesterday he could barely make it one lap. Steve is in pretty good shape, for comparison he ran 5 miles easily on the treadmill the day he checked into the hospital. So these meds are kicking his butt. He also started Tacrolimus today. That is a constant infusion. The third and last ATG round is tomorrow and transplant is Wednesday.
Today was another tough day. Steve had fevers overnight and developed a bad case of diarrhea. The fever stopped mid morning, but everything is just going right through. They believe it is just the medications, but are testing him for infections, c-diff, etc. He had the 3rd and final (yea) ATG infusion. Again, it was given over 6 hours, with pre-meds and then the same pre-meds again halfway through. No immediate fever or chills, but he seems to get them overnight. The second dose was better than the first, and this 3rd one seems better than the 2nd. His body must be adjusting.
He is still trying to eat and did get in a couple of miles today. It is a weird ride this roller coaster. He will be up and about, and then hit with pre-meds which just knock him out, literally within a few minutes. Then, they seem to wear off just as fast, a couple hours later and he is up and about again. I don't remember any chemo treatments that had such dramatic ups and downs.
He also started on prophylatic meds today, 2 antibiotics and Valtrex. The antibiotics could account for the diarrhea, but at this point he has had so many different medications, who knows. His counts are still hanging in, wbc 3.7. Although he is having a mini, they said they expect it to go to 0. I have to give a HUGE shout out to all the amazing nurses on the 11th floor! I don't know how they can be so compassionate, supportive and caring ALL the time. After cleaning up 2 days of vomiting and diarrhea, roid rages, collecting bodily fluids, changing bedding, dressings, and they still take so much time to try and calm your fears and anxiety about what's going on, and coming up. Angels on earth. Tomorrow is the big day.
hallo, moi, bonjour, Guten Tag, shalom, hello?
Well today was the BIG day, and ..... as of now Steve is still speaking English. THANKFULLY, it was very uneventful and we spent our day speculating on which traits he may get from his donor. Of course we were joking around, but our nurse told us stories of past patients who actually had changes that did resemble their donors (one who previously had jet black hair grew back red, and their donor did have red hair!). Even though you could just taste the seriousness of the situation (my heart was pounding out of my chest) all the staff were very calm, upbeat, the doctor even cracked a joke.
The cells were in a large bag, it looked like syrupy blood. They were not frozen when they brought them in, and it said on the bag that they were collected on 11-9-09 at 6:10. The infusion took about 3 hours, and vitals were monitored every 5 minutes or so at first, and then in larger increments. Our doctor delivered and checked the cells, and then the nurse stayed with Steve for the first hour and half. He was given a large dose of Benadryl and more steroids. He slept through most of it. He got VERY cranky after and then when the steroids wore off felt much better. He was starving, so I brought in take out from one of his favourite places and we celebrated a great day! His counts are going down, wbc 1.7 today. The nurse said the toughest is yet to come, so it was nice to have an uneventful, restful day.
Steve has been feeling really well post transplant. Other than being more tired than normal, in all other aspects he is feeling pretty "normal". He is just climbing the walls to go home. But this is good I keep telling him. Easy for you to say, he says, your not the one locked in a hospital, connected to a machine 24/7. No, I am not, and wont even pretend to know how he is feeling, but from a wife and caregivers position I am very happy. I am a little surprised though. We were told by several nurses that week 2 was worse than week 1, and halfway through, not even close. His transplant doctor said that he is doing very well, but "hanging by a thread". My fingers, toes, and everything else that is crossable is crossed hoping this keeps up and that thread holds.
He is on tacrolimus, 2 antibiotics, valtrex, and a hydration solution with magnesium and some other things. He got 2 doses of Methotrexate on day +1 and day +2. The nurse said it was a very small dose and he had no side effects. They also said prepare for transfusions as almost everyone needs them by about day +5. His blood counts are still hanging in there, wbc 1.2 and platelets low but ok. He wanted me to say thank you to everyone for their thoughts, prayers, and well wishes
Steve is feeling really well. I almost hate to put this down on paper for fear of jinxing it, but so far, no side effects or complications from the transplant. He is eating well, everything tastes normal, no nausea, no gastro problems, no headaches, nothing. He is tired though, but not so bad that he does not feel like moving around. He is up and about, walking the halls, bothering the nurses, climbing the walls. Today, Dr. Khouri said that he could leave the 11th floor and go downstairs to see our daughter.
Anderson has a ban on children under 12 in the hospital right now due to swine flu. Since she is 8 they would not let her in, but he got to go outside and see her. They were both so excited! His blood counts are WBC .4, and platelets, 43. So far no transfusions either. Today, he received another small dose of Methotrexate, along with the tacrolimus, magnesium, antibiotics, valtrex, and he has started an antifungal. The valtrex and antifungal are pills, all others are iv infusions.
I forgot to mention something prior to transplant. He has almost always had a swollen lymph node under his arm that he can feel easily since diagnosis. While he has numerous others throughout his body, this was his "gauge", he could feel it, and a lot of the time see it. This thing would swell and shrink based on treatments, but never disappeared so that he could not feel it anymore. 2 days after Zevalin, he said he could no longer feel the lymph node at all.
Steve had another pretty good day. Two problems have come up, still luckily pretty minor. He had an awful headache last night, it lasted about 4 hours, said his head felt like it was splitting in half. But it stopped and has not reoccurred. He is also (and he is going to be very mad at me for posting this) constipated. His buddy from Ohio (on same protocol, who is also doing very well, in fact everything is playing out with his transplant basically the same as Steve (both of their blood counts were even 0.4 yesterday) said that it is a sorry day indeed when two grown men get together not to discuss football or cars but bowel movements. Hopefully this will be resolved without complications, I will be sure and get a full report for those interested:)
His wbc is .3 today still going down slightly. The nurse said this is probably getting close to bottom. He started Neupogen today, so hopefully he will see some engraftment soon? All other meds are the same. Physically he is doing good, but I think it is starting to wear on him mentally. He is fighting a lot with his pole buddy. He is just tired of being constantly connected to it via 4 dangling tubes. Push it, pull it, in the bathroom, out of the bathroom, it just wont reach across his room, dont get it wet, wake up at 4:00am to go pee for the 9th time, half asleep, and careful, dont step on your tubes! BEEP BEEP BEEP.
I know, it could be A LOT worse, and he knows it too. He's just blowing off a little steam I think. If this is the worst to complain about, life is good. But I think I am going to have to come up with a mental-pick-me-up soon.
Steve has had great days since I last posted, each day feeling better and better. He is up pretty much all day now, rarely laying down during the day. His appetite is great, no taste issues, nausea, or stomach / digestive problems. He spends the day working, I brought him his hard drive which he connected to his laptop and is going to town. It keeps him busy, and he is happy.
His wbc bottomed at 0.3, then yesterday made the turn to 0.9. Today it was 1.7. His platelets have not gone up much, but have not gone done either (today 29). So no transfusions so far.
He is still on the same medications, the only difference being he received another small dose of methotextrate today. I think this is the last one. The previous one made him nauseous, so hopefully this one will not be too bad. He is still getting neupogen shots, today was the 4th. He said he had horrible back and head (bone) pain last night, but even that could not damper his spirits. He said today that he cannot believe how well this whole procedure has been. He said that parts of RCHOP (1st HCVAD round) and all of the RMINE was much worse than this has been so far. How I hope things continue this way for him. I believe he expected so much worse. What an amazing program Dr. Khouri and MD Anderson have run so far.
Dr. Khouri said today that Steve will probably be discharged by Wednesday. Home for Thanksgiving! The other 2 guys (on same protocol and same schedule) whom I mentioned previously are also doing very well and are slated to be discharged next week as well. It seems that all 3 have had about the same experience with the transplant. Amazing!!
And did I mention how AWESOME and INCREDIBLE the staff is on the 11th floor? I believe I did, but I have to say it again, angels on earth!
Steve was released from the hospital today! YEA! As today is our 20th wedding anniversary, what could be better! His wbc is 4.8, and his platelets are 53. He has to go into MD Anderson ambulatory treatment center everyday for at least the next two weeks. He has restaging scans and bm biopsy scheduled for mid Dec.