Getting released later today.

Feeling pretty fatigued. That Isofamide kicked my butt, it has been two days and I am just now coming out of the haze of it.

I saw Dr. Connelly this morning. She is having me have two units of platelets to hold me over the weekend until I see her on Tuesday. I can probably shave this evening, but after that I have to be careful again. My spleen really soaks these platelets up. I don't know why. Very unhelpful spleen!

Despite having to get two units of platelets, I am being released from the hospital today. It takes hours to be released, and I haven't gotten my platelets yet, so it is likely to be pretty late before I walk out the door.

The nurses have been kind enough to turn off the bed alarm (which gets set since I fell yesterday). I am not supposed to move around without them, and am generally following instructions, since the Isofamide still has me a little light headed.

Thursday Doctor Visit

Posted by Becky
I was able to talk with Leif's doctor a bit about how he looked on Monday. The enlarged spleen is a concern, but not necessarily evidence of active disease and doesn't change his treatment plan. The doctors can't tell anything from its appearance while he's getting chemo, especially since he's been getting platelets, because it soaks up cells like crazy.

If the lymphoma breaks through, they will not want to do a stem cell transplant while it's active. So, they will do another PET scan prior to proceeding with the transplant.

They are going to keep Leif in the hospital tonight and check his platelets again tomorrow since they've been going so low. He's been having quite a bit of nasuea, so his appetite's been poor. He just had a tomato sandwich and some black bean soup, which is his first meal since lunch yesterday. The low platelets gave him a nosebleed, and I'm sure you can imagine how nauseating it is when that runs into your stomach.

The doctor thinks his unusual (compared to previous chemo sessions) level of fatigue and "fogginess" is due to the ifosfamide, one of his new chemo drugs. That can have temporary neurological effects, including sedation. They don't worry about it unless the patient goes into a mild coma, and Leif's not that sleepy. 

Today's other drama is that Leif fell in the bathroom. The doctor and nurses think it was probably because his blood pressure's been low, and standing up made it drop lower. So much for his being able to tell when he's lightheaded enough to need an escort. Leif reports that he felt basically fine, then blacked out and discovered himself on the floor. He came to in a good fall position - yay martial arts - butt on floor, head in air. He scraped his back and conked his head on a plastic trash can. I was in his room reading, and the first I knew about it was hearing his IV pole clank and an angry yell. I pulled the remote control out of the wall, which we were told was a quick way to make people come running (it works), and found him in the bathroom on his knees, looking surprised. They did a CT scan on his head (standard procedure for people who hit their heads if they have low platelets) and he doesn't have any bleeding; also, no bruising on his head. Being bald makes that easy to verify. So, no big harm done. Leif now has a red "fall risk" blanket on his footboard. Oh, the ignominy. His nurse mercfully turned off his bed alarm, though, as long as he's good and doesn't try to walk anywhere without company until further notice. It would be extremely dangerous if he fell and really nailed his head on something, with his platelet levels so low.

A question many people have is, if Leif's spleen is acting so crazy and gruesome, why not take it out? Lots of people live fine without a spleen. The answer is that doing so would not affect the course of the disease, and naturally that kind of surgery is very risky for someone in his condition. So, although it soaks up all his platelets, it gets to stay.

Chemo done, but still at Midcoast

Posted by Becky
When Leif checked in for chemo on Monday, his spleen had gotten larger and his white blood cell count was somewhat elevated.

The chemo was fairly uneventful; he got some new drugs this time. The Rituxan was better; he got chilly for about an hour, but otherwise did not react badly. It still makes him feel cruddy, it was a relief not to have any rigors. They dosed it at half-speed. Since typically patients react to Rituxan less with each dose, I am hopeful that future doses will not be too bad for him either.

Leif's platelets are low, so after yesterday's chemo he got a unit of platelets, and he's getting another unit today. It looks like his big spleen is collecting them all rather than letting them circulate like they're supposed to. He also has been extremely fatigued, and is sleeping a lot.

When he gets out of here will depend, I think, on when they can keep his platelets above 10. They were 3 yesterday, and 8 this morning.

Starting "Light" Chemo

Back in the hospital. My room number is 248, and my telephone number here is (207) 406 7248. Feel free to call anytime between 9 am and 6 pm. I will mostly be around. :)

To keep my cancer in remission, I went in today to do a "light" chemo called RICE, after the initials of the chemo drugs that are being given. Although the R stands for Rituxin, which I tend to have a reaction to (I had rigors 2 out of the last 3 times that I had the drug), so it will be given last so that it will not hold up the rest of my treatment. Which means that I am really getting ICER. Too bad. I like rice.

I put "light" in quotations because we were talking to a nurse down at the oncology department.
     she asked, "What therapy are you going in for?"
     "RICE" I said.
     "ooh, that is a tough one. " she said.
      I replied, dismayed, "I heard that it was an easy course."
     She looked at me and asked "What treatment have you been getting?"
     "HyperCVAD." I said.
     "Oh." she said, "you will find that easy then."

Was she just saying that after the fact because I was clearly dismayed by the idea that I was going in for another tough treatment, or is RICE indeed much easier to handle than HyperCVAD. Who knows. I guess I will find out.

In other news, Dr. Kelly, my surgeon, took a look at my abscess and said that it was healing up very well. I can sit in a regular chair again and it does not really hurt during the usual course of things, which is great. I am also glad to be off the antibiotics which were giving me some digestive problems and generally making me feel crappy. 

We have a plan

Posted by Becky
Leif had a meeting with his main oncologist today, and we now have a plan for the next steps of his treatment.

Next week, Leif will be getting "light" inpatient chemotherapy at Midcoast from Tuesday through Thursday. The regimen he's getting is nicknamed RICE, for the four chemo drugs he'll be getting; his old friend rituximab, plus ifosfamide, carboplatin, and etoposide. They are planning to give Leif the rituximab last, so they can give it as slowly as necessary and not interfere with dosing the other three drugs. The regimen is intended to be gentler than the regimens he's received so far; its goal is to keep the lymphoma in remission while his abscess heals and he recovers fully from the pneumonia.

Depending on how well he heals up and how he's looking, 3 weeks later (October 9) he will either get one more course of RICE, to give him additional time to get strong, or the doctors will decide that he's in shape enough to move forward with the high dose, aggressive chemotherapy regimen, called High Ara-C, that begins the "chemo mobilization" process (prior to stem cell collection) described in my Dartmouth Visit post. At that point, he'll have re-entered the standard treatment flowchart for autologous stem cell transplantation.

As far as how Leif's doing now - he's been out and about all day today, except for a nap, and did some work installing light fixtures in the house. He's sore in the backside, but otherwise seems to be feeling okay. He's back up to 170 lbs and is continuing to put on weight, under the theory that it won't hurt to have a few extra pounds stored up before he gets more chemotherapy. His moustache is growing back in rather thickly, and is quite noticeably gray! Not a lot of hair or beard to speak of, so he's heading for a Monopoly Guy look. Quite distinguished.


Leif does not ordinarily wear a top hat or bow tie, but if he did, he'd look rather like this.

Our plans for the fall are, roughly, as follows:

1. RICE chemo regimen in Midcoast next week
2. Recovery period at home in Brooks
3. October 9: either another session of RICE chemo at Midcoast and then a High-Ara-C chemo session 3 weeks later, or immediate High Ara-C (whether at Midcoast or Dartmouth, I'm not completely sure yet; I've gotten mixed messages about this)
4. Move temporarily to Dartmouth for stem cell transplant (approximately 4-9 weeks total?)
5. When Leif is well enough, return home and move into an in-town apartment.

We're planning to rent a place in Belfast for the winter. There are a number of reasons for this; Leif should not be handling wood due to risk of fungal spore exposure (our house has wood heat), be around construction (our house is under construction) or be around barnyard animals (our land recently housed chickens) until his immune system is strong again. Also, I don't want to find myself frantically digging out to the road after a snowstorm or driving through 12 miles of wintry mix if Leif needs to get to the hospital.

So, Belfast friends, please keep your ears out for a winter rental, in an in-town place that is dry (not damp/moldy, no basement apartments), easy to clean, no wood heat, warm, and otherwise seems suitable for an immune-compromised person. Leif thinks that an upstairs apartment would be fine, as long as the bathroom is on the same floor as the bedroom. Currently I estimate we'll be ready to move in sometime in November at the earliest, or more likely around the first of December. We'll be renting for at least 6 months, maybe more depending on the state of Leif's health next spring.

Sunday, 9/9/12

I did not go into the hospital because of the drug reaction, but because I had an abscess.  Becky has been delicate about talking about it in her posts because it was on my butt. This turns out to be a terrible place for an abscess. Of course I was unable to sit, but you also use your gluteal muscles to stand, and do pretty much everything. Additionally, that area is loaded with nerve endings, so my pain scale rating on a scale of 1-10 was "Too bad for numbers".

Waldo County Hospital shipped me down to Midcoast (which seems to be their default solution). I was somewhat surprised that they did not feel like they could lance an abscess. It makes me wonder what they do there. Mostly outpatient stuff I guess. So they gave me an antibiotic that gave me a unpleasant reaction - swelling in the face, rash, and chills - and sent me on my way. I arrived at Midcoast in MUCH worse shape than I arrived at Waldo County Hospital, but to be fair, no-one knew at the time that was the antibiotic that I reacted to.

The surgeon, Dr. Kelly, came in today and lanced my abscess at about 2pm, and I immediately felt better. Just having the pressure relieved on those tender nerves made all the difference. I slept for a couple hours, and now I am up and about. My pain level is "I think I just need a bandaid". I can sit as long as I use a cushion, so that makes life a lot easier. Despite all those paintings of the Romans, it is hard to eat when you are laying down. 

The abscess, is stuffed with an antibiotic ribbon that pokes out of my skin, so that the skin will not heal first. You want the abscess to heal from the bottom up. Tomorrow, they are going to take that out and repack it with a more long-term ribbon, and I will have to be careful of it for about two weeks while it heals completely. I don't want to go through this again. I hope to be released tomorrow, but it might be Tuesday. It just depends on how that area is healing up.

Allergic reaction - culprit identified

Posted by Becky
Leif is doing okay this morning. The fever and low blood pressure appear to have been an allergic reaction to the Amox (a penicillin-related antibiotic) he took Friday night and Saturday morning. (edit 9/11/12 - see later post for details of Leif's drug reaction adventures. I posted without full information, trying to get information at a distance and pass it along quickly!)

A surgeon is going to treat the abscess sometime this morning or early this afternoon. The CT scan they did last night showed that this is the same infection Leif had last time he was in the hospital; it never quite healed up, and only now that his white blood cell level has recovered has it formed an abscess. Now that his body is dealing with it, the doctors expect it to heal completely. He's pretty drugged up on painkillers at the moment, and he can't sit because it hurts too much, so he's been dozing and listening to a book on his iPod.

I'm still home - feeling better, if not 100%. We are hoping Leif can come home tomorrow; in the meantime, I'm planning to get some household chores done in preparation for the work-week ahead.

Dartmouth Visit

Posted by Becky
Leif had an appointment September 6th with the transplant specialist, Dr. Meehan, at Dartmouth. He wanted to see Leif again before determining his treatment path from here. So Leif, my brother Doug, and I drove up to New Hampshire on Thursday, after seeing Leif's cardiologist in Brunswick (not much to report there) and staying with Rhonda on Wednesday night. Thursday night we had a fun dinner with my aunt Prue in Hanover, and she gave us a quick tour of the Lebanon/Hanover/Norwich area. I appreciated getting a feel for where we will be staying while Leif has his stem cell transplant. I was glad to see that the area is chock-full of food co-ops.

Dr. Meehan has been talking with Leif's primary oncologist, Dr. Connelly, several times a month, so he's up to date on how Leif has been doing. The PET scan results look good enough that they've decided an autologous (using Leif's own cells) stem cell transplant is the way to go, as opposed to using cells from a donor. Only if he relapses after transplant, which could potentially happen 6 months or more down the road, would he need a transplant of stem cells from a donor. This is good news, because donor transplants bring another level of risk with them.

The reason they do a donor transplant is if they can't get the lymphoma into remission (aka resistant disease). This is what they were worried about at Leif's last Dartmouth meeting, but it looks like his disease has responded well enough to the chemotherapy he's gotten so far, that they are more confident an autologous transplant will be successful.

They are still keeping an eye on his spleen; they were hoping it would be smaller than it is by now, but spleens don't have a mechanism for shrinking fast. The concern is that mantle lymphoma cells could still be hiding in there.

We discussed Dartmouth-Hitchcock's experience treating mantle cell lymphoma patients. As we've mentioned before, MCL is not a common diagnosis, especially in people as young as Leif. Dr. Meehan oversaw the first stem cell transplant in an MCL patient in the nineties, back before they had a specific name for MCL or were 100% sure what it was; they thought it was a type of leukemia. In the last decade or so, Dr. Meehan has overseen transplants in about 30 patients with MCL. Transplants are pretty effective if done during the first remission; if the lymphoma comes back prior to transplant, the results are generally poor.

Leif's form of MCL is the most aggressive type. Normal white blood cell counts are around 90, and when Leif was diagnosed, his were around 9000. So they have been treating the cancer very aggressively as well.

The standard treatment from here would be to put Leif back into the hospital (Midcoast) for another 5 days of an aggressive chemotherapy regimen using the chemo drugs Cytarabine and Etoposide. After that, patients' blood counts (the number of red and white blood cells and platelets present in his body) are low for about 3 weeks; during that time they give shots of Neupogen, a drug which causes the marrow to produce extra blood stem cells. Neupogen combined with low blood counts induce the body to release stem cells into the bloodstream - that entire process is called "chemo mobilization" (that is, mobilization of the stem cells). When counts come back up, they collect stem cells from the blood and freeze them. After 2-4 weeks, when the patient has recovered from chemo, they do the transplant.

However, because Leif got so sick after his last chemo treatment, they don't think he's ready to get such an aggressive regimen. They still aren't sure why he got so sick, so there's no way to know he won't get even sicker if his blood counts are low for 3 weeks straight. However, since Leif's cancer is so aggressive, they have to do some kind of chemo to keep it in remission until they harvest stem cells and do the transplant, because as I mentioned above, transplant after relapse has poor outcomes.

There are other chemo treatments they can give him, or they could possibly just hit him with Neupogen and collect stem cells without prior chemotherapy. (That's what they do with healthy stem cell donors.) They could give him another set of the A and B cycles he's gotten heretofore. There are many options.

The doctor is still mulling over the pros and cons of different regimens; once he's made up his mind, he'll contact us and Dr. Connelly and we'll go from there.

Dr. Meehan told us who will be on Leif's team at Dartmouth, and we met with the transplant coordinator, who gave us a tour of the stem cell collection unit and and bone marrow transplant unit. She's from Maine, which of course makes Leif happy. The Dartmouth-Hitchcock Medical Center is huge! It has a bank and a food court. While visiting Leif there, I will need a pocketful of bread crumbs. Sanitized, mold-free bread crumbs. The bone marrow transplant unit has 7 rooms, and is staffed at 2-3 patients per nurse. Patients are encouraged to bring pictures and stuff from home to make their rooms comfortable.

Patients in the bone marrow transplant unit can get visitors, but visitors need to self-screen for being sick with anything. No fresh fruit or flowers are allowed in the unit due to the potential for mold spores. We can bring food in from outside as long as it meets certain guidelines, which the hospital will provide to us beforehand. We're hoping to use Skype for virtual visits while Leif is in the unit.

Leif got his veins checked for the stem cell collection procedure - they can't use his port for that. The collection procedure is similar to the procedure for donating platelets - they put needles in both arms, draw the blood out of one arm, pass it through a machine that collects the stem cells, then put the rest of the blood back in the other arm. The process can take one to several days of 4-5 collection hours per day; they need a certain volume of stem cells, and will just keep collecting until they get enough. He will need to hydrate beforehand and wear comfortable clothing.

The pre-transplant workup will consist of an echocardiogram, pulmonary function test, and a chest xray. These can all be done near home. They also do viral tests; Leif got blood drawn for those tests at Dartmouth on Friday morning.

A general overview of the transplant process is:

1. Pre-transplant workup, chemotherapy of some sort, at Midcoast - time frame unknown
2. Stem cell collection at Dartmouth, as outpatient visits - 1 week or so
3. Admit to the hospital on transplant day minus 6; administer chemotherapy to kill off all Leif's bone marrow (several days) 
4. Infuse the previously-collected stem cells, in a process that looks like a blood transfusion and takes several hours (day 0, transplant day)
5. Keep Leif away from potential sources of infection, give transfusions as needed, and treat any infections that arise, until Leif's blood counts come back (1-2 weeks, usually).
6. Send Leif home. He will still have a weakened immune system for the following 6-12 months or possibly longer, and will need frequent check-ups. Most patients experience road bumps during this period, but the majority of MCL patients who receive stem cell transplants make it through this recovery period okay.  

About Stem Cell Transplants

Posted by Becky
A stem cell transplant is basically the same thing as a bone marrow transplant. In Leif's case, the cells will be harvested from circulating blood, rather than pulled from bone marrow. This is a more comfortable procedure for all involved.

Several years ago there was a lot of discussion about embryonic stem cells, but adults also have stem cells in their bodies. Blood stem cells live in everybody's bone marrow, and generate all the different types of blood cells - red blood cells, white blood cells, and platelets. During a transplant, healthy stem cells are collected, either from the patient or from an adult volunteer donor, and frozen. All the cells in a patient's bone marrow are then killed by chemotherapy and, sometimes, radiation, in order to kill off the cancer cells. Then the healthy stem cells are transfused into the patient's blood stream. They naturally migrate to the bone marrow and get back to business making blood.

Back to Midcoast Hospital

Posted by Becky
During the drive to Dartmouth and back -- there's no delicate way to put this -- sitting in the car bruised Leif's bony butt. Last night it was quite painful; we called the doctor, who recommended he take Amox (Augmentin), an antibiotic we had on hand, and go to the hospital if he got any worse. This morning Leif had a fever above 102, so we went to the Waldo County emergency room, where everybody knows our name.

After checking Leif out, they didn't find anything super worrisome - blood cultures came back negative for any kind of sepsis and there are no signs of pneumonia - but the poor guy has an abscess where the sun don't shine. To be safe, the oncologist recommended they transfer him to Midcoast Hospital. His blood pressure was low, and he was flushed and is still running a fever.

Meanwhile, I'm a bit under the weather myself, so I'm staying home in Brooks until I feel better. There is no sense exposing Leif to anything else, if I haven't given him my bug already. His neutrophil count is in the normal range at the moment, which means that he's not super-susceptible to infection. But there's no point taking chances. I know the nurses and staff at Midcoast will take good care of Leif, and Rhonda was able to go see him today. His phone number there is 207-406-7251 if you would like to call.