NHL Cyberfamily

Non-Hodgkin's lymphoma support

 

Nigel Standing's SCT journal

 

In Loving Memory of Nigel Standing May 26, 2000

Thursday, August 05, 1999 5:22 PM Subject: The story so far ...

Well folks I saw my oncologist today, and it seems like we're going for the big one. So next Thursday, I'm going to be checking into the hospital for the first phase of PBSCT AKA induction. Seems like my tumor load isn't as low as they would have liked, but they think that having another round or two of ESHAP or ICE won't really improve things. I'll definitely have to get hold of a laptop for the stay to keep in touch with you all :-) Otherwise, readying myself for 2-3 weeks of hospital food ! Nigel –

Friday, August 06, 1999 3:32 PM Subject: Thanks!!! Folks -

Thanks for all the good wishes I've received it makes me feel a lot better to know there are people who are out there thinking of me. I believe it is inspiring the karma too ... because I have one piece of good news - the company I work for has "found" a spare IBM ThinkPad that I can borrow while I'm in the hospital. Of course it helped that one of the guys in the system admin group happens to be British. When I explained the situation, he gave me a nod and a wink said he'd see what he could come up with - turns out a brand new IBM - I really must be blessed. Also spoke to the guy who co-ordinates medical leaves of absence who said that even if I worked part time from hospital, then it wouldn't be considered a leave of absence, and because "I'm exempt" they'd still have to pay me :-) Good to know that I can save my disability allowance. We'll just have to see how it really turns out, but I must say I'm feeling a bit better about things now. Have a great weekend, Nigel –

Thursday, August 12, 1999 12:50 PM Subject: First communique

Hi Folks - Nothing much to report so far - I am typing to you courtesy of the ThinkPad, having been just installed in my "suite" at Alta Bates. I am in negotiation for a second phone line, but seems unlikely apparently oft requested, but (in Englishese) "more than my jobs worth". Actually, one of the manager types was a little apologetic "I guess we should've done that when we remodeled", IMHO I think the wiring is already there, they just don't want to have to call engineering. Just as well that I brought my cell phone with me! Will report more when I've been "accessed", and they've started the VP-16 and cytoxin, although that won't be for a couple of hours since they like to get a fair amount of hydration going before starting with the "real" stuff. In the mean time I'll finish my lunch. Over and out from the 4th floor at Alta Bates Hospital in Berkeley. Nigel –

Saturday, August 14, 1999 9:13 AM Subject: Second day in the clink

Well folks, I was hoping to be able to report something "interesting" about my stay here but so far everything seems to be pretty much routine, and standard. I think I've settled into the room pretty well. As I mentioned I have a great view from my 4th floor room, north towards the Berkeley Hills, and I can even just see the spire of the Campinelli (?) on the Campus. I asked for an additional table on which I have the laptop, and other stuff set up. My music box is over underneath the TV/VCR combo (which I haven't really used much); I have a great selection of CDs, from home and loaned by friends - currently listening to a divine collection of early English choral music performed by the Oxford Camerata - how can you get 12 people to sing like that unaccompanied, and keep so perfectly in tune, I guess practice, practice, practice ...... Visitors yesterday: 1. Occupational therapist - seemed to be happy that I had plenty to do, and wasn't just "vegging out". She gave me a couple of sheets on "The importance of stree reduction" with various techniques to minimize stress, "discover things to laugh about" one tip :-) 2. Physical therapist - made a brief stop, explained the importance of keeping active. Worked out a program of 20 minutes on the bicycle followed by stretching with the large brightly colored rubber bands she brought me. [ Believe it not I was up at the crack of dawn, well 7:00am and actually did it, although I only managed 10 minutes on the bicycle. ] 3. Nutritionist - went over that I'm now on a low bacteria diet, precautions to take (washing etc etc), also how to be careful even after I leave the hospital. 4. EKG lady - just a base line EKG in case anything goes awry down the road.

As usual the staff are concerned about water retention, so I was put on low dose lasix after I seemed to have gained too much water weight, which seems to have done the trick. In this environment you become dominated by basic physical functions - bowel movements, urinating, mouth care, all take on an unfortunate importance :-) Glad to say that there's still plenty of time for other things, even if they are interwoven around the four hourly "vitals check", and the occasional changes of chemo/hydration bags. Oh yes a couple of small but inconsequential surprises yesterday morning. My daughter (5.5) had a baby tooth pulled (you could see the new tooth already underneath, but it was just being obstinate) so mother and daughter swung by unannounced to show me tooth, and gap - great excitement at home when the tooth fairy had done her stuff :-) Secondly, a friend, and his wife (a transatlantic couple) visiting her parents here in Berkeley, heard about my plight, and dropped in for an hour or so - very pleasant. Anyway, that's about it for now - if you have question, comments, please feel free to post to the list, or e-mail me directly (nigel@idiom.com). Nigel –

Sunday, August 15, 1999 11:50 AM Subject: Third day in the pokey

Folks - Good to see your settled in and getting a routine. My hopes and prayers all goes well for you. Keep us informed when you can and know were thinking of you. I've been totally overwhelmed by all the messages of support I've received so far, it's been a great source of the positive. I feel a bit of a charlatan, really because, believe it or not I don't think much as really happened. I continue to get the infusions of VP-16, and Cytoxan, spaced 12 hours apart, plus hydration and other goodies. I have to confess to feeling a tad tired, but I think that's just as much down to being in a "strange" environment, and not getting a particularly good sleep at nights - you know, when you're away from home, the familiar bed, comforter, pillow are missed. And of course the nurses do have to come in during the night to check vitals, and chemo etc.They are very considerate, and try to minimize the disturbance, but it's there none-the-less. I am still retaining water - but this is considered not unusual because of all the liquids they're pumping into me - I dare say I'll be due for more lasix later on - just keep a clear path to the bathroom :-) First confession of my stay - I didn't do my physical exercises this morning - I woke late, and breakfast was almost immediately there - I'll try for a few minutes on the cycle this afternoon (now if that ain't procrastination, I don't know what is :-) The nurses/caregivers are wonderful, I can't speak too highly of them. Very competent, caring, and because it's a relatively small unit, they arrange (when possible) for you to have the same people on the same shifts, so everyday is like meeting old friends. I'm having a ball - I'm online most of the time, listening to an eclectic mix of music, and am glad to say that I have avoided use of the boob-tube thus far (for some reason they don't have cable here, so there really isn't much of interest). The room does have a VCR, and apparently there is a library of tapes, but so far I don't have the desire. Perhaps in a week or two when I've really got cabin fever, I'll give in :-) I have to confess I splurged a little yesterday, I ordered some CDs online from Amazon, which went remarkably well bearing in mind I didn't have my credit cards with me - I'd ordered stuff from them before, so they new about me "I have an account", the system uses the credit card you used before, and your home mailing address. I was thinking about being a smarty pants, and having them delivered directly to the hospital, but I thought that would invite too much opportunity for screw ups, especially as one of the disks is on back order. Oh well the lunch tray just arrived, so I'd better check out what little surprises are in store for me. More from me later, Nigel -

PS For those confused by the term "clink" I used in yesterday's missive - slang for jail in the UK. By the same token, my wife tells me that the "pokey" is Americaise for jail, or should that be gaol, hum ....

Monday, August 16, 1999 3:55 PM Subject: Re: Third day in the pokey

Are water retention and Lasix common for just about all who go through high dose chemo and PBSCT's? I think it's a problem whenever they pump you full of chemo in conjunction with lots of hydration to keep you flushed out. The lasix is a diuretic, to assist the process of getting rid of all this extra water. Nigel –

Monday, August 16, 1999 9:09 PM Subject: Day four in the brig

Well folks I don't know where the time goes, another day here under my belt, and I'm having a ball. I actually managed to get up by 7:30am and was on the exercise bike with a suitably boppy CD playing, after about 15 minutes hard biking, I did a selection of exercises with, and without the colored rubber bands, and before I knew it breakfast had arrived. Well I usually order scrambled eggs, but the way they cook it, and by the time it gets here, it's not at its best, so I'd ordered some extra tomato and onion (which got by the "low bacteria police"), and I proceeded to make a sort of impromptu salsa to spice up the rather dead eggs :-) When the oncologist caught me halfway through eating this strange Mexican style egg concoction on her morning round, I think she was quite impressed :-) Highlights today - a long chat with the one the chaplains, Father John, who (of course) is Irish - must have spent an hour or two over lunch - it was great. We decided we're going to put in an entry for the California lottery this Wednesday which is supposed to be a big jackpot (now what could I do with $65million hmmm), and of course we're going to win :-) Then my wife and kid came for a good long visit - photos for the the peg board, more CDs, new cheapo-cheap slippers, and a big box of non-hospital tissues - ah. Emma had made me what I took to be a wand (out of an old paper towel tube) which she'd painted an interesting number of colors, and decorated with sticky red hearts all over, topped off with silver strips at one end, but she announced that it was really a "load speaker", and proceeded to convey wise messages through it. Well I'm still having water/weight problems, so they've up'ed the lasix dose, but I don't think that it's going to make much difference. Still this problem I'm told is only likely to persist while I'm on the chemo, which by reckoning should be over by the end of tomorrow. I have noticed that I'm getting more tired in the evenings now, I wonder whether that's a cumulative effect of the chemo ??? Oh yes just as a little project I've started putting my daily CBC results in a spread sheet, and have been fritzing around with Excels "graph wizard" to see how I can plot them - if I get really bored I can waste hours on this :-) Still I only have three days worth of data, so nothing too spectacular, other than my aggregate WBC actually went up by a tad ! Go figure. I guess the real fun with the CBC will start a few days after the chemo stops, then we'll see some dramatic graphs. Good night everyone, Nigel -

Tuesday, August 17, 1999 8:41 PM Subject: All excitement here day five

Folks - Up until 6:00pm today this had been "just another day" in the hospital. Rather boring actually, no visitors today, but I did manage to get the much sought after second phone line, so I can work/stay logged in, and make calls :-) Anyway, I was working with a colleague in San Jose, about 40 miles away (I'm in Berkeley), and said that I thought we were having an earthquake, she thought I was joking, but about 10 seconds later, she reported that she too was experiencing the quake. Seems like we had a "five" based on the San Andreas fault, near Bolinas - glad to report, no damage or injury. Otherwise - I've actually finished the five days worth of "high dose" induction chemo, and now all I'm waiting for is my counts to go all the way down, and then all the way back up - about 2 weeks give or take - then off for apheresis (stem cell collection) after that. I have developed a slight rash on my chest, and back - but since I'm not taking any of the "usual suspects", they think it might be the allopurinol (they have seen that before). Other little successes today - got the list of tapes in the VCR library, ditto a new list of CDs they have, and also found out how to get a daily paper delivered. On the exercise front I managed to complete the target 20mins on the bike, although I have to confess it got tough towards the end, and by the time I'd finished with the colored, rubber bands, stuff. In came the breakfast - got my extra tomatoes and onions, but (my new idea) Tabasco sauce failed to materialize ehm. Still I have been rather busy work-wise so apart from fairly frequent "lasix moments", the time has whizzed by. Have to get myself ready for a conference call at 10:00am tomorrow, and, as I sit here looking at the screen (logged in to my company's e-mail, a well as my private ISP) plenty of (company) e-mail keeps popping up with new issues and problems - no peace for the wicked :-) BTW the charge nurse came in to say hi, and noticed my copy of Lorraine's book on my table. Before I knew it, she was flicking through it making complementary noises. Apparently, they have another lymphoma patient here (she didn't know the detailed diagnosis) who is suffering from itching all over - we didn't find anything in the book, but I did say that it had come up on the support group,so I'd ask for any pointers. Bye from fairly stable Berkeley, Nigel –

Wednesday, August 18, 1999 8:04 PM Subject: Where's my soup?

Hi folks - A special on the menu today "lental soup" didn't show up this evening - there was a cover on the tray, but underneath, there was nothing :-) What a disappointment !! The nurse was on her cordless phone immediately, and it was re-ordered (along with extra ice cream as a compensation), but it still ain't here, if it don't get here soon, then I'll be having it for breakfast :-) Well you can tell what starts to be important, when you're stuck in a room for a long time - I wonder how, astronauts, or submariners handle it for months and months, after all I'm just looking at 2-3 weeks, and I do have a lot of my familiar things, and land marks around me. What's happened to day ? Well my counts are starting to drop, as expected, platelets down to 80k, WBC 3.4, and HGB 10.5 and generally, am starting to feel a bit fatigued, well less chipper than I was a day or so back - this is "all par for the course" or so I have been told. The mobile X-Ray person came to take the weekly chest X-Ray (Ididn't know this was "part of the protocol"), apparently they like to steal a lead on any lung problems, OK with me. Otherwise I'm sitting tight, and negotiating about how much lasix they give me. Thanks for all the e-mail of support, and jokes, and everything else, I will attempt to respond to all individually, but if I don't quite manage it please forgive me - anyway, I do have another couple of weeks to get caught up ! Nigel -

Thursday, August 19, 1999 8:00 PM Subject: Day 7?

Folks - I guess you really know you've been in the hospital a long time when you can't remember how long you've been there :-) Anyway, today marked my one week anniversary, so amongst other things they had to change the port needle, and the dressing. My counts this morning, "heading south", platelets 0.59, WBC 0.7, and HGB 11.1 The big news is, I have broken out in rash which covers the top of my chest, top of my back, my face, and bald head. Glad to say it isn't itchy, but my face does look pretty ugly (lots of yellow pimples) - was thinking about hiring myself out for teenage acne commercials, well I would do if my WBC wasn't so low. Wife and daughter swung by this morning to drop supplies off, but didn't come into "the room" on account of the low counts (that was tough). Haven't been feeling too bad energy-wise, and have been able to keep myself occupied. I worked most of the day, but took time off this afternoon to read the editorials. Particularly enjoyed, the one on Kansas's "evolution decision", and another big grin (of course) was the one on George W. - ooops I just realized I got a tad political, sorrriiiieee. Well the '9ers are stinking up Candlestick, so I guess I better quite before Scott throws me off the list :-) Help another lasix moment ...... Nigel –

Saturday, August 21, 1999 9:21 PM Subject: Saturday - Day 10

Hi there folks ! Just realized that I missed a day yesterday - sorry to those who were wondering what happened - still here alive and kicking :-) (I guess I was laughing too much at Leo's chauvinistic e-mail, that I forgot). Life seems to have settled down into pretty much the same routine; get up sometime after 7:00am exercise a little (if I feel like it); breakfast 7:45-8:00am. Then doctor's rounds and other medical stuff; somewhere in there I manage to get a shower, and before long it's lunch time. Each day you've got to select menu items for the following day, so some time during the morning, I find myself "programming" my way around the menu, writing stuff in, and generally trying to make the food side of things interesting - great disappointment today; the Cream of Asparagus soup, failed to show (both lunch and evening). I was told that they "ran out" but there is the promise that it might be available tomorrow. I still have a rash on my upper chest and back, also my entire face and head - I've decide that I look like Darth Maul (?) the villain from the recent Star Wars movie. The hydrocortisone cream they have me apply 3 times a day doesn't seem to be making much of a difference. A colleague, who is "coincidentally", also a leukemia patient, came to visit today - I'm trying to encourage him to get in to the telecommuting program since he's been "off" for several months, and has been told by his oncologist that he may be off through March of next year. I think he needs to have something other than the disease in his life, and perhaps working (say) 50% might be just the ticket; for a lot of the time he's OK - he just needs to go to the cancer center 2-3 days a week for treatment. I ordered a couple of CDs last weekend, and my wife called to say that they've arrived, so she will bring them in tomorrow, along with the Sunday papers, and other supplies - yipee. My counts are all rock bottom, which is to be expected, I got my first Nupogen shot today, but thankfully NO lasix. Key figures WBC < 0.5, HGB 9.9, Platelets 29. I have to confess to feeling somewhat fatigued, certainly not as bouncy as I was last week, so I'm just trying to take things easy; work, when I can, and rest, or "recreate" when I can't. Believe it or not I have actually got quite a lot done (for those of you who are interested, I'm re-writing a device driver interface :-) Still got some architectural issues to deal with, especially since "they" now want it to run on several different, semi-compatible, platforms. Oops I just realized I'm rambling on, and what do you care about my nerdy old job ! Bye for now from the 4th floor of Alta Bates Hospital, here in sunny Berkeley CA. Nigel -

Thursday, August 26, 1999 6:42 PM Subject: Re: Where's Nigel?

Folks - The last couple of days have been pretty tough, and I haven't been really able to do too much (or have the enthusiasm to get out of bed). Anyway thanks _very_ much for asking after me, and now the least I can do is to give you an update. Today (Thursday, August 26) marks the two week anniversary of when I checked into the hospital - on one level the time really seems to have shot by. So first order of business was the replace the portacath needle and dressing (you are only allowed a max of seven days with one setup).. As my counts have tanked, I have started to feel rather fatigued and lethargic, this coupled with developing mouth sores, in spite of the baking soda/peridex mouth care protocol, has meant that eating got to be such a chore that they decided to put me on TPN, which I started last night. I'm also on a low dose morphine drip which has meant my sore throat, and mouth don't hurt anymore, and (I guess I feel pretty happy :-) So far I've had one bag of platelets (a bag is 8 units), and a unit of red blood cells - the nurse just informed that because my platelet count was 17 today, I'm in line for another bad bag of platelets. During the last few days I have been running a temperature, nothing high enough for the nurses to freak out (last night's high was 100.6), but this morning my oncologist decided that it was just a matter of time before I crossed the magical 101, so they decide to start me on Amphotericin (the nurses call it Amphoterrible, because of the possible side effects, which include "rigors" :-) In spite of pre-med I did get terrible shivers (I felt like a human earthquake), but they were brought quickly under control by a shot of IV Demerol, and some toasty blankets out of the blanket heater. Oh yes, something new, well new for me, last night's Neupogen shot produced an egg size hematoma which has bruised up nicely. It didn't hurt or anything, but after about five minutes following the shot, I had this large, hard bump on my belly. Has anyone else experienced anything like this? The rash which was on my upper back, upper chest, and head has pretty much cleared up, although I still have residual "pox" on my face - they never did decide what the cause was. Tuesday evening one of my colleagues from work came to visit, which I very much enjoyed - his kids had made cards for me which I thought was very cute - the youngest can't write yet so her wishes were dictated :-) The nurses here are great; one has brought in a pile of videos for me to watch, so when I feel too tired to do anything "serious" I watch a movie. It's a pretty eclectic collection (this morning I watched Moonraker). Well that's about it for now, I hope that I'll be able to give more frequent up dates from now on - the big question for me at the moment is when will my WBC start going up ? My WBC has been <0.5 for the last seven days, so I'm hoping that anyday now I'll see some movement. BFN, Nigel -

Thursday, August 26, 1999 7:29 PM Subject: Re: Where's Nigel?

As one who has not followed this closely, what chemo regime are you on? >And for what dx? I am currently "enjoying" a 3 week stay in the hospital as part of a stem cell transplant. This is the first phase, sometimes known as the induction phase, where the objective at he end of it, is to harvest my own stem cells. Chemo I received: high dose VP-16 and Cytoxan. Diagnosis: relapsed large b-cell NHL Nigel

Friday, August 27, 1999 2:50 PM Subject: Re: How are you

Wondering where you are and how your doing? > Is everything going well? Well I'm just into my third week in the hospital; "they" say I'm doing very well, and actually I do think that is true, but patient paranoia dictates that I question what "they" say. Would "they" tell the blunt truth to someone who isn't doing well, like "frankly we think you're doing terribly, perhaps the worst we've ever seen", I think not. Wow that last jolt of Demerol, which they just gave me, is really slowing me down ... am feeling rather spacey, and my typing seems to be going to pot. BFN, Nigel - PS by "they" I mean the doctors, nurses, and nursing assistants.

Monday, August 30, 1999 11:44 PM Subject: Body functions, body functions ...

Folks - I realize that it must be a couple of days since I sent an official report from the 4th floor of Alta Bates Hospital (in the peoples republic of) Berkeley. Four days ago it it was decided that I should start on Amphotericin (the nurses call it Amphoterrible, because of the possible side effects, which include "rigors" :-) They also sometimes refer to it as "shake and bake", so you get the drift. In spite of pre-meds I did get terrible shivers (I felt like a human earthquake), but they were brought quickly under control by a shot of IV Demerol, and some toasty blankets out of the blanket heater. My second treatment ended in a similar way, but I'm glad to report that for treatments 3 and 4, they seem to have gotten the pre, and intra meds just right so I haven't had the shakes anymore, however do I seem to spend half the day in a medicated, zoned out state (I slept to 3:00pm today). The hematoma from the botch nupogen shot of few nights ago is still there, only more heavily bruised. I seem to have gained a certain notoriety, and nurse and Drs want to come in to take a look. Perhaps I should start charging them :-) How do you think "Can you spare some change for a poor patient" would go down? Somehow lasix has made an unwelcome return to the rules of engagement; my weight has mysterious broken the 179 barrier, so I've been the lucky recipient of lasix both last night and today, which apart from the sheer inconvenience of having to leep from bed at odd times, also actually seems to hurt to pee under these circumstances. My final malady involves "Preparation H" so I don't think I need to elaborate on that front. Now the good news - got a great card from my mother who was spending a week in Oxford; it features and artist's rendering of the Encaenia; apparently she enjoyed herself a great deal, however found Lady Margaret Hall a little bit further out of town that she'd expected, "so there was quite a bit of walking". A friend brought in all four episodes of the A&E Horatio Hornblower mini-series which I greatly enjoyed, my only gripe is/was when are they going to continue the series (the current series only covers the first couple of books - still plenty of film worthy material)? I dare say I'll watch them all again before returning them. My counts don't really seem to be shifting at all (WBC: <0.5 Platelets: 35 HGB: 9.1) - I must say it's a bit frustrating having to sit here and just wait for things to happen. It's been 11 days now since my WBC went below 0.5 ! Still I'm in good spirits, I seem to have been having a fair share of visitors which always brightens up the day - my friend Geoff is back from his months camping holiday, so he pops in, in the morning with a copy of the NY Times, and of course I have all my e-mail correspondance to catch up on too. BFN, Nigel -

Saturday, September 04, 1999 2:33 PM Subject: Last weekend in the hospital !

The time really does seem to have flown by rather quickly; tentative discharge date is tomorrow (Sunday). My WBC count is now over 4.0 so I guess I'm ready for the big outside world. As my counts have come back up they've taken me off the various antibiotics, and other stuff they've been giving me eg. TPN. So when I woke up this morning, I felt incredibly tired, and had no desire to get out of bed. It might seem strange but I'm feeling quite sad to be leaving all the nurses, and other staff I've got to know during the last three weeks. I have an appointment on Tuesday morning at the cancer center to start the apheresis, I hope I can manage to get it done in one session - thought I'm not sure what the average (number of sessions) is. Looking around the room I seem to have accumulated a lot of stuff, I wonder how I'll manage to get it all home, well at least down to the car, I guess I can throw out/recycle the newspapers, and magazines, so that will reduce much of the stuff. BFN, Nigel -

Sunday, September 05, 1999 1:25 PM Subject:Re: Last weekend in the hospital !

Have you been in the hospital for conditioning chemo to prepare you for apheresis prior to autograft? Yep - they call it "induction" here.  If so, what drugs were you given? "High dose" VP-16 and Cytoxan Nigel -

Sunday, September 05, 1999 2:54 PM Subject: Re: Last weekend in the hospital !

 I'm so happy that your home among the one's you love, I'm a big believer that one recuperates faster when at home with our loved one's. Not home yet, I'm afraid to say ! The doctor on call hasn't decided whether he wants to "risk" me going home today, with the Cancer Center being closed tomorrow (Labor Day). Currently my counts are looking good WBC 8.0, HGB 11.1, Platelet 43, but apparently he is concerned that if anything should happen tomorrow, and I need (say) a bag of platelets, then would I end up in the ER ????? Then there's the issue of the nupogen shots .... > Enjoyed reading about your stay at the hospital and hope everything remains the way >it should! Positive!!! Looking forward to seeing your input on the list. The time has actually whizzed by; having the laptop has been a real godsend, I've been able to pretty much keep working, and keep in contact with friends and family around the world. My biggest problem is that I think I've fallen in love with one of my nurses, yeh, yeh, I know I should be old enough, and too stupid, but there you have it - fortunately (or otherwise depending on how you think) she's just left for a three week European holiday (ooops that should be vacation), so hopefully I will get some perspective on this by the time I come back in for the transplant. Anyway it'll sure make life interesting, for the coming weeks. Currently, this last day seems to be getting to me the worst, just hanging around (not hooked up to anything) just waiting for the doctor to make the decision. Personally I think I'm ready to roll, but ..... More from the 4th floor of Alta Bates in sunny Berkeley as it happens, (I think I'll go for a walk now, before taking a shower :-). Nigel - PS I'm not into _cold_ showers if that's what you're thinking :-)

Sunday, September 05, 1999 8:50 PM Subject: Re: Last weekend in the hospital !

Daniel will be on VP-16, ifosfamide, and rituxan, conditioning for 2-3 weeks, watching counts and strategically performing apheresis, as I understand it. In my case, I had the VP-16 and Cytoxan for the the first five days I was in the hospital. (The actual dose was 10 doses of each spaced 12 hours apart, VP-16 @ 400mg, Cytoxan @ 1200mg). When my counts "bottomed out", bench marks used for transfusion were less than 10 for HGB, and less than 20k for platelets. If I recall correctly, I had two units of red blood cells, and 2 or 3 bags (each bag is 8 units) of platelets (I've got all the data in an Excel spreadsheet on the laptop if anyone's interested). > I assume some nupogen will be added to this regimen. On the second or third day, when my WBC count was basically zero, I started getting nupogen shots; on the last 2-3 days the nupogen dose was increased. Current figures WBC 8.8, HGB 11.1, and platelets 43k. > Were you in-patient the whole time? Yes. > Side effects? Fatigue, loss of appetite (was put on TPN for a few days), a little diarrhea, loss of most/all body hair. > What are the side effects of VP-16? What is VP-16? Well according to Lorraine's book VP-16 is also known as Etoposide, Toposar, and VePesid. It is a Topoisomerase inhibitor. The side effects for most of these chemos amount to pretty much the same, and effect different people in different ways, but the usual hair loss, mouth, and intestinal disorders. I was fortunate because I came through it relatively unscathed, that apart from the mild diarrhea, and the hair loss. > Was GCS-F used to bring your counts up? GCS-F == nupogen > Best of luck to you. You are in my prayers. Keep in touch Thanks - still early days yet, Nigel –

Wednesday, September 08, 1999 2:19 AM Subject: Back in the real world ?

Folks - My attention was drawn to the NHL web site where my daily reports are now logged, and apart from being somewhat flattered that Mary's idea had taken off, I realized that if the whole thing was going to be recorded for posterity, then I guess I need to let you know what's going on between the induction, and transplant phases. So if it's OK with you I'll give a quick retro report on the last couple of days since I got out.

Sunday 5, September

Finally got discharged today. It took until after lunch before it had been agreed by the doctor on call, and the nurses that I could in fact go home. The stumbling block was "who was going to check my counts, and administer the nupogen shots on Labor Day" ? The Cancer Center was closed, so they resorted to writing orders that it would be done in the ER (I've had this done before, so it wasn't such a big surprise). So eventually around 3:00pm my wife, daughter, mother-in-law, and a niece arrived at the hospital. I needed a cart to get all my stuff down to the van, it was quite a sight. I joked that next time I'd need a shopping cart (British: shopping basket). It was really strange being in the outside world again, everything seemed rather bright, and weird, and the car ride home seemed almost in slow motion. [ BTW I can't imagine how a convict copes after having been locked up for years ! I guess that's why so many end up back in jail ]. Anyway, I decided to take it really easy the first night, not do anything too stressful or tiring, and tried to remember all the "do's and don'ts" concerning mouth care, and what I'm allowed to eat, I am still supposed to observe a "low bacteria" diet. Had problems sleeping, and regulating my body temperature, I was either too hot or too cold, just couldn't seem to get it right. BTW it seems this temperature thing isn't restricted to just sleeping (see below).

Monday 6, September (Labor Day here in the USA)

Well got up bright and early and took myself off to the ER. This time they insisted in full registration, including wristband. Fortunately they had all my details on the computer, so I didn't have to go through all that. Eventually got my shots, and CBC done, but had to wait the mandatory 20 minutes after getting a shot, so eventually emerged from the ER around 10:15am with a belly full of nupogen. Got home in time for an early lunch and then off to the pool, to make suitable proud parent type noises as my daughter went through her paces. Again I just couldn't seem to get the temperature thing right; I ended up lying on one of those chaise-longe things, in the shade, with a blanket wrapped around me (I didn't go in the water, of course). In the evening, my wife made (home made) pasta, and a salad carefully washed, which made a nice change from the hospital fare I'd been used to. One thing which has taken me quite by surprise is that I seem to have become hyper-emotional, quite often the simplest thing will cause me to tear up, it's kinda getting embarrassing. Sometimes I'm not even sure why I have this/a reaction. The only thing I can think of is that it's some sort of pent up emotion which built up while I was in the hospital - any ideas ? Another thing I've noticed is that I smell. I observe all the usual washing and hygiene, taking my usual shower in the morning, fresh undies every day (whether needed or not :-) but is it the nupogen or what ? After a while I start to exude a sort of chemically oder, I mention it only to find out whether others have noticed this.

Tuesday 7, September

Today I went to the Cancer Center for "stem cell collection" (AKA apheresis) but I was in for a big disappointment. My blood counts weren't high enough for apheresis, you typically need a WBC count in the 30's, mine was flagged as being abnormally high at 12.5 :-) so they gave me more nupogen shots, 1400mg I think, well it was three shots worth, and I was sent on my way, to return tomorrow for a second attempt. Needless to say I was really down hearted, and I later heard that it looks like my counts aren't going to be good enough for tomorrow either (CD34 <0.1), so we're now looking at possibly Thursday or Friday. Tomorrow (Wednesday) it's just more nupogen, Thursday they'll give me a CBC, and I guess more "G", so I'm currently scheduled on Friday for apheresis if all the counts look good. Oh yes my daughter started school today - for some reason they call it "kindergarten" here (she will be six in December) elsewhere kindergarten is what you do _before_ you start school, anyway it was all very exciting, although I couldn't really share in the excitement, because I was expected "bright eyed, and bushy tailed" at the Cancer Center by 8:00am. Following my early arrival home, I actually worked, believe it or not enjoying the luxury of telecommuting with a 384kbps DSL connection :-) Otherwise still feeling fatigued, and getting these teary moments, I tried to have a conversation with one of my wife's friends when I picked up the phone, and nearly lost it several times. But anyway I'm trying to hang in there, and make it through the next few days, which seem to be being tougher than being in the hospital. That's it for now from Oakland, Nigel -

Friday, September 17, 1999 2:08 PM Subject: Not such good news

Hi folks - I have resisted the temptation to continue my daily stem cell transplant journal, because so little was happening that I thought it wasn't worth reporting, and take up valuable list bandwidth. Anyway saw my oncologist on Wednesday, which went pretty much as I had expected; they will try to collect my stem cells some time down the road, but she is concerned that I have had some "re-growth" since the high dose chemo I had in the hospital, ie. it didn't put me into remission, so there wouldn't be any point in actually doing the transplant (at the moment) anyway :-( I get fresh CAT scans on Monday, and have another visit with her on Wednesday of next week when we'll discuss future treatment options. Looks like she might put me on Retuxan (?). She's also talking about TBI (total body irradiation) again, which had provisionally been ruled out because of my earlier "just to make sure" radiation treatment, which brought up issues of possible spinal damage. To be honest, things ain't looking so good, and (currently) I don't feel particularly good in myself, I tire easily, and seem to have developed a back ache, and abdominal discomfort which gets progressively worse during the day. One piece of good news is that my mother and sister have booked to fly here from the UK for a week in October, so I'm looking forward to multiple motherings :-) That's about it from me, Nigel - PS Glad to hear that there are so many list members who are actually getting good news, that's great !


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