I apologize in advance for breaking this news in an email.
This is a letter, which I honestly thought we would never need to write. On September 15, I had my "routine" two-year follow up Exam for Hodgkin's Disease, it was anything but routine. The CT scan showed a growth in my upper chest which was indicative of a recurrence of Lymphoma (Hodgkin's Disease). On September 22, I underwent a CT assisted Fine Needle Biopsy. (They use a CT scanner to localize the mass and then use a needle to extract cells for evaluation.) For two weeks we didn't have results from this test and were expecting to require a surgical biopsy. On Friday, October 9, Lori and I went to Stanford to meet with a new Oncologist not knowing what to expect, as we had no test results. There I was diagnosed with Recurrent Hodgkin's disease. The cancer has come back.
Unlike last time, we had no symptoms. Not a single warning! We went in for a routine exam and BAM! here comes the nightmare once again. It appears that the recurrence is often found in routine ways with no prior warning. It's good that we caught it early, but the treatment is not pleasant by any means. I do not know all the details of the protocol yet, but I will give you the best information we have. We will be meeting with my first (primary?) oncologist tomorrow to discuss the plan of treatment.
The procedure they want to put me through is called an Autologous Stem Cell Transplant. This is basically a Bone Marrow Transplant using my own cells as the donor cells. (All formed elements of the blood are derived from the stem cell, which is formed in the bone marrow.) The protocol will go something like this:
Despite how awful this sounds, it would be much worse to be dead. The percentages are definitely in our favor. Especially, since I was in remission for 2 years. If you would like to know more, we have found the following web site which pretty much details what I will probably be going through: http://www.flex.com.au/~kaye/
During the next several months we ask for your thought and prayers. At this moment in time, there is not much that needs to be done, just be there for us. If you feel you must do something proactive at this time, I would urge you to donate blood or support your local cancer research center.
We have met with my doctor and started performing the staging tests (to determine how far the disease has progressed) and other tests to determine if my body can handle the treatment.
Yesterday we did a bone marrow test, to verify that the previous rounds of Chemo did not affect the bone marrow and to verify that the cancer has not spread to t bone marrow. Today we did a pulmonary function test, which is basically a breathing test. They verify lung capacity, oxygenation rates of the blood, etc. Basically a piece of cake.
On Monday I will be admitted to Good Samaritan Hospital. While there, I will have a Pick Line (sp?), which is basically a catheter in the arm for giving injections, drawing blood, and administering Chemo and will be used until I go to Stanford. At Stanford, they will install a Hickman Catheter which will be used for the second round of treatment.
While at Good Sam, they will finish my staging with a complete CT scan. Based on the last scan, and the Gallium Scan, we don't expect any surprises and expect the cancer to be confirmed to be localized in the center of my chest. They just want a baseline to compare the results to when they finish. They will also conduct a Mugga (sp?) scan, which basically tests the heart functions.
As of today, this is my current best guess for my treatment schedule. I feel fairly confident with the October / November time frame, December will be firmed up as we get through the first Round.
Preparatory Regimen
Well the ordeal has begun ... sort of. Today we started out by having a PICC (Peripherally Installed Central Catheter) Line installed. Basically this is a long term IV, but it extends into the Superior Vena Cava (a major vein). This will allow the administering of Chemo without requiring a new IV each time. Theoretically, we are supposed to be able to do all IV related activities through it, but ...
Next on the list of things to get done today was to complete our staging with a CT scan. Unfortunately, the PICC line was too small to administer the contrast agent at any flow rate. They tried (unsuccessfully) to start another IV (four times) but in the end, we called it a day.
The PICC line is large enough to begin Chemo, so tomorrow morning (technically) at about 1:00am, they will begin the first round of Chemo. It starts so early because they need to hydrate me for six hours before they start. The first drug to be administered is called Cisplatin. Following the Cisplatin, they will give me a few hours or so to flush out the pipes and then onto the next drug, ARA-C, which I will get twice tomorrow at 12 hour increments.
Throughout the whole process they will be giving me anti nausea medicines. Assuming all goes well, and I feel good, I may be able to check out of the hospital Wednesday night. A more realistic plan is Thursday morning.
Did I forget to mention, tomorrow they are planning on taking out my PICC Line and installing a new, improved, larger one! The new one should be able to support the current and future CT scans. We shall see. Of course, PICC Lines are not real good for being used to draw blood, but we don't seem to need to do this much. We did use it today to get blood after the nurse didn't believe me when told her I had bad veins.
I guess that about covers all the information I have for today. For those of you who have asked, my blood type is O Positive. I will be using the blood from the Stanford Blood Bank. This blood typically comes from long time donors and is considered to be extremely safe. Donor information can be found at http://www-med.stanford.edu/school/bloodcenter/facts/donationprog.html (donor appointments: 650-723-7831).
Thank you for all your notes, thoughts, and prayers. Lori is relaying them to me here in the hospital, as I don't have direct email access.
Hard to believe that it has been five days since I started Chemo. Well, technically four since I didm't start until 1:00am Tuesday. I have been back home from the hospital for about 24 hours now still feeling sluggish, but not too nauseous. Also, I seem to be noticing some hearing changes, but I have been lead to believe this is temporary.
So, you must be asking, what have they done to you lately? Well, I got three doses of Chemotherapy Tuesday. At 1:00am they started me with five hours of Cisplatin, then at 9:00am and 9:00pm then gave me three hour doses of Ara-C. The Cisplatin is the yucky Chemo and made me extremely nauseous, despite all of the drugs they gave me to fight it. Tuesday was not too bad, but I was pretty much completely out of it all day Wednesday.
They didn't install a larger PICC line as the one they put in originally gave them some difficulty. Instead I was able to have the anesthesiologist put in an IV line. It was either that or a central line. The central line would have needed to be removed prior to my leaving the hospital, so I'm not too upset about missing that experience.
I got my Mugga scan just as I was leaving the hospital yesterday. They machine was down with hardware problems on Wednesday, which didn't bother me too much as I was down all day as well. We started the process yesterday morning when the machine developed software problems which were fixed about 2 minutes before I was going home.
My staging is complete, although not officially so. There is no evidence of Cancer in the Bone Marrow; my abdomen and pelvis are clear as well; they growth in my chest has not shown any growth since last month; and my heart (unofficially) is up to the task in front of me. If I had to generate my own staging, I would guess I-A, but that is just my opinion. I'll be meeting with my oncologist next week so we can go over my treatment.
I'll be returning to Good Samaritan Hospital on November 9th for another four day treatment. Between now and then, I'll mostly be resting and recuperating.
Please keep Lori in your hearts prayers. This is much more difficult on her than me. I have the ability to put myself into "survival mode" where all I need to do is get through this. She doesn't have this luxury and must deal with everything on a day-top-day basis.
Thanks again for your thoughts, hopes, prayers and notes.
We'll be in constant communications.
I don't have much to report at this time, but I figured you would all think no news was not good news. Over the past couple of days my throat has been extremely dry, and my stomach is occasionally upset. It is worst in the morning, probably because I don't eat and drink all night long. But as the day goes by, it seems to get better.
I'll be meeting with my Doctor Thursday afternoon for routine blood tests and starting to prepare for the next round (just a week and a half from now). We'll do a CT scan next week to verify the tumor has shrunk.
We'll probably be talking with Stanford early next week to work out the exact course of treatment.
My taste buds are still shot, my hearing a little off (temporary I'm assured), and it is weird not being able to really feel your teeth when you brush them. All related to the wonderful effects of Chemo. On the plus (?) side I still have all of my hair. On the negative, I really need a hair cut as I expected it to all be falling out. It is really hard to persuade yourself to get a haircut when all the hair is going to disappear soon!
My new job has been wonderful in getting me through this. Working at home sure does have its advantages when I can't really get out much. I am taking the opportunity to learn the product line and tools which should really help me when I return to the field early next year.
I guess that covers it all today.
As always, thanks for all of the thoughts, prayers, cards, emails... We'll be in touch.
We went to the Doctor today for our scheduled follow up. Things went well. Here is the info I have at this time.
Things can't be completely perfect. All of my blood counts were within the normal range, with the exception of platelets. My reading was 55, dangerous is below 20, and normal is 140-150. I just need to be careful of cutting myself and bleeding. I don't recall many "normal" readings at all last time I went through Chemo.
The vein my PICC line was inserted in was irritated. Possible minor infection, but a weeks worth of antibiotics should clear that right up. My doctor doesn't think it is anything to worry about. We had it cleaned and rebandaged. That's when the problem began. When the nurse tried to flush it, she couldn't get any fluid through it. Of course, they didn't want to blow it out, so they had no choice but to remove it. Oh well, easy come, easy go. When it was out, they tried forcing fluid through it. It blew out where the syringe connected to the needle. I feel better knowing the line was so strong. We'll go back to a standard IV for the next round. (I presently use an anesthesiologist to put in my IV's. I've successfully frustrated nurses, oncology nurses, ER doctors, you name it. the way Doctor Presley (my anesthesiologist) puts it, he has to be good. If he can't get the line in, there is no one to backstop him and it may mean life or death. He is the only doctor I know with a soft touch and needles! Most doctors prefer the bull in the china shop approach.)
Here is the plan for the next round.
Of course Doctor Tseng (Oncologist) asked me how I did last week with the nausea. I told him not too bad, just a little minor upset. He then mentioned that most people are EXTREMELY nauseous from the Cisplatin. Makes me look forward to the next round. Keep praying for that to continue!
We will probably be talking with Stanford next week about the hard part of the plan. We'll let you know when we have any details.
Until then ...
Lori and I went to Stanford today to talk to Dr. Horning (my Stanford Oncologist). This is quite a feat since she is normally only in the BMT (Bone Marrow Transplant) Clinic on Friday. Anyway, I had an x-ray, which like always didn't show anything; Did some bloodwork (9-vials, 5 sticks - got to love those veins); and discussed schedule. We are working out a schedule that should keep me out of the hospital for Christmas. We have a couple of options depending on how my Chemo goes.
Next week I have a follow up CT to determine if the growth is responsive to Chemo. If it is, the growth should be smaller. If the growth is not smaller, all bets are off. So lets hope for the expected shrinkage. We will also be putting in the Hickman Catheter next week. This will make Chemo and blood drawing much easier. However, there is a lot of maintenance to be done. Stanford is presently working the approvals. Once the Hickman is in, I will go to Good Samaritan Hospital for my next round of Chemo. This will probably be delayed from the projected Monday start until Wednesday or Thursday because we need to get the Hickman in before then.
The following week I will be injecting Neupogen to stimulate cell growth. This is in preparation of Apheresis of the Stem cells. Once the counts begin coming back up, I'll go up to Stanford so they can harvest the stem cells. This is fairly easy and much like dialysis. In order to get enough cells, they will conduct the Apheresis for 1-5 days depending how much they are able to pull off each day.
This is where the schedule gets "soft" and set in mud. Approximately 2 weeks after the next DHAP Chemo session, I will have (another) follow up CT Scan. If the growth continues has not shrunk much, we will probably go into BMT phase. If the growth shows significant shrinkage, we may go one more round of DHAP and then do the BMT in January. The reason for this is that they want the growth to be as absolutely small as possible before starting the truly nasty Chemo.
Hopefully I haven't confused you all TOO much.
In a nutshell:
Week Of Activity
Nov 9 CT Scan, Hickman Catheter (probably) DHAP round 2
Nov 16 Neupogen shots
Nov 23 Apheresis of Stem Cells, CT Scan, Thanksgiving
Nov 30 Meet with Doctors
Dec 7 Massive Chemo OR DHAP Round 3
Dec 14 Stem Cell Transplant, Recovery OR Week Off
Dec 21 Recovery OR CT Scan AND Christmas
(Really Fuzzy...)
Thanks for everything. As always, we'll be in touch.
Not much to report at this time, but as it is the end of the week, I figured I would provide some updates.
In my last email, I appear to have generated some confusion. The listed dates refer to the week of. For example, I'll be having a Hickman Catheter put in sometime next week, but I don't know when. Chemo will follow that sometime later next week, but I'm not sure of the dates. As everything hinges off the next Chemo, the rest of the schedule will adjust accordingly.
I got the first of my blood test results from Stanford - my counts. My Red counts are continuing to decline (No surprise). My platelet count has rebounded to higher than when I started (Surprise). The most interesting is that my White Cell count took a nose-dive. It dropped to 0.8 thousand/micro Liter (uL). Normal is 4.0-11.0. The lowest mine ever dropped on Stanford V was 0.9, and that was towards the end. This means I am highly susceptible to catching a cold, virus, etc. My doctor tells me this is not much of a surprise as we a using both shotguns to treat this.
Yesterday (as a consequence of the white counts) I started taking Neupogen to stimulate white cell growth. For the first time in my life, I gave myself my own shot. It wasn't too bad, but boy the needle sure looks large when you have to inject yourself. I will be on Neupogen for 4 days. The doctor's office is trying to work it out so I can give myself shots at home, as opposed to going into the hospital for the shots over the weekend.
The down side of Neupogen is that it stimulates cell growth, of course that is its upside as well. Tylenol is becoming my new best friend (next to Lori of course). My tailbone and hips ache from the growth. Fun, fun, fun. And I have a double dose to look forward to for the next round of Chemo for the Apheresis!
I am attaching my blood counts for people who are into that sort of thing. I apologize in advance if you are not running Excel 97. If you are having trouble opening this file, Microsoft has several conversion tools.
As always thanks for your continued cards and prayers. We'll let you know when the schedule firms up for next week.
Went in for blood tests today. My white count is up to 44.8. Normal is 4.0 - 11.0. So, no more shots for now and I am no longer super susceptible to catching an illness! The nurses figured this would be the case with as much pain as I was in Thursday and Friday. The pain is caused by the body trying to produce tons of cells in the small bone marrow cavities. All of my other counts have started going up as well. That usually means it is time for Chemo to knock them back down.
I have my CT scheduled for tomorrow afternoon, before which I'll go to the Oncologist's office and have them put in an IV. Oncology nurses are used to putting IV's in for people who have no veins. No news on when I'll get the Hickman Catheter (it's being worked between Stanford and the Insurance Company!). After the Hickman, I'll go in for the next round of Chemo, possibly Thursday or so.
Here is the latest Chemo schedule, which is firmly set in Jell-O! We have not yet had the Hickman Catheter installed, due to delays in insurance processing. The treatment protocol is not considered to be trivial, and of course is out of network. Therefore, there is a great deal of additional paperwork to be done by Stanford to get everything lined up and approved. It is a long and convoluted trail, but Stanford has people who work full time on just getting the approvals. They know all the ins and outs of the system and it is just a matter of time. In the meantime we have lost almost one full week. We are confident we will get the approvals soon! We need them before we can do the Apheresis.
Friday 11/13 Check into Good Sam for DHAP Round 2, 4 Days of Chemo
Monday 11/16 Have Hickman Catheter placed at Good Sam
Go Home?
17 - 11/27? Neupgen shots to stimulate cell growth
11/20 - 11/27 Sometime in this window, when cell production is high, we will begin Apheresis
11/27 (?) Follow Up CT Scan (needs to be about 2 weeks from Chemo for valid results)
12/7 Check into Stanford for Massive Chemo
12/14 Stem Cell Transplant
Please keep in mind these dates are firmly set in JELL-O. In other words, don't be any money on them. Based upon the results of the next CT scan, the schedule could easily slip into January. This would occur if the tumor shows continual shrinkage from the one I took two days ago. They want the tumor to be as small as possible before they start the massive Chemo. If it still shows signs of shrinking, they will do another round of DHAP to try and shrink it further.
We should have results from this week's CT scan by Friday afternoon.
As always, thanks for your thoughts, prayers, cards, and love. It really helps us to get through this.
Yeah I am out of the hospital once again. I feel kind of like a bird with only one wing with the amount of time I have been stuck in the right shoulder. So far my blood counts are acceptable and the pain is tolerable. I'll be back a Stanford this afternoon for training on how to maintain the Hickman. If all goes well, Next week we'll siphon off all the Stem Cells so we can get on with the road to recovery.
There is so much "antiseptic" goo all over me, it just a bit difficult to move. Hopefully they'll let me know what stuff I can scour off later today! My approximate medical schedule for the next two weeks is as follows:
November
11/17 Hickman Catheter, Neupogen Shots
11/18 Consent forms for the procedures, Hickman Catheter Training, Neupogen Shots
11/19 Daily Labs at Dr. Tseng, Neupogen Shots
11/20 Daily Labs at Dr. Tseng, Neupogen Shots
11/21 Daily Labs at Stanford, Neupogen Shots (USC at UCLA football)
11/22-11/25 Daily Labs at Stanford, Neupogen Shots - start Aperhesis when WBC >1000
11/23-11/27 Daily Labs at Stanford, Neupogen Shots until Apheresis Completes (1-5 Days)
11/27 CT Scan at Good Sam
December is still too far away. It is dependent on the 11/27CT Scan
Here is my blood work for up to yesterday. Keep in mind Chemo takes a couple of days to begin knocking the count back to down so they can begin to grow back again! If you have problems with the attachment, please let me know, and I'll see if there is anything else I can do with it.
Thank you for your prayers. The nausea was bad, but it could have been so much worse! I do not feel like I am a pill tasting factory!
First let me apologize for slurring my typing. Of course, if the spell checker works out correctly, then you shouldn't even notice. Perhaps some bad grammar, but ...
As you are no doubt aware from my previous notes, I have completed the second round of DHAP Chemo and am waiting to start Apheresis (harvesting of stem cells) at Stanford. My counts are basically declining (but all over the spectrum). My white count is extremely high (44.2), yesterday is was 63. Once this gets back into the "normal" range 4-11, then rebounds, we will begin Apheresis. The reasoning for this is that the Stem Cells seem to closely follow the white counts. Right now, my white counts may be high, but the Stem Cells not. So, until the white counts drop and then come back up, as a result of the Neupogen, I get my daily Neupogen shots, but no Apheresis. Traditionally Apheresis begins about day 11 (next Wednesday).
My red counts are low, but not critical, my platelets are low, but also not critically. We will be watching my counts daily until we complete the Apheresis. During business days, I go to my local Oncologist, during weekends and holidays I go up to Stanford.
So, where do we go from here you ask?
We are tentatively projecting a CT Scan on Nov 27. This will give us our road map. It the tumor has not shown any additional shrinkage, we will start the Bone Marrow Transplant (BMT) procedure on/about December 7 as an inpatient of Stanford Hospital. From this date I will be totally unable to work for at least 3-6 months.
Dec 7 Day -7 Fluids, High dose BCNU (2 hours), fluids, anti-nausea, anti-pain, etc.
Dec 8 Day -6 Fluids, etc. NO CHEMO
Dec 9 Day -5 High does VP-16 (4 hours), fluids, anti-nausea, anti-pain, etc.
Dec 10 Day -4 Fluids, etc. NO CHEMO
Dec 11 Day -3 High does Cytoxan (1-2 hours) , fluids, anti-nausea, anti-pain, etc.
Dec 12 Day -2 High does Cytoxan (1-2 hours) , fluids, anti-nausea, anti-pain, etc.
Dec 13 Day -1 Fluids, etc. NO CHEMO
Dec 14 DAY 0 STEM Cell Transplant
Day 0 becomes the new date by which all other dates are measured. In talking with Stanford, the normal prognosis from day 0 goes approximately like this. 0 - 3 months, unable to complete a day without significant rest periods. 3- 6 months, able to complete a day, but completely drained by the end. 6-12 months, stamina returns to near full pre-BMT. Additionally, it is not uncommon for mental fatigue to occur for the first 3-4 months of recovery.
For the first 30 days, my system will be critically suppressed. Most counts will go to zero (regardless of scale). I will be especially prone to infection, disease, etc. Lori will probably go bonkers (understandably) with worry. For this first 30 days I will require 24-hour observation in case anything comes up. The most critical milestone (out of them all) will occur in the first 14 days, or so. My white count will start to come up. Once this happens, we can breathe a sigh of relief, it is the indication that my body has accepted my stem cells. I don't expect Lori to eat, drink, breath, or sleep until this count registers on the scale again!
It's hard to tell exactly how my body is going to behave this far in the future.
In the off chance, my tumor is still shrinking from the Nov 27 CT scan, this whole schedule will be pushed to the right one-month or so. That way we can do one more complete round of Chemo before starting
I'm sure I've forgotten lots of a thing you may be interested in, but that's just life. How about Hickman Catheter maintenance the peanut gallery asks? Basically, Lori and I (it's a shared effort) change the dressing every Mon, Wed, and Fri and any other time it happens to get wet. The new style of bandage allows me to shower with out getting it wet, with a little caution. Every day, I need to flush out the lines with Heparin, which keeps the blood from clotting. There are two line (lumens) which need to be maintained. When it was installed, it had blue factory caps. We replaced those with blue (new) caps, and every day when it is flushed out, we replace it with red (replacement) caps. So much for the training. During the day I tie it around my neck with Sunglass Strings (good suggestion Ken). During the night, I tape it to the chest for a little more security. The strings keep it out of the way, but do not irritate the skin. Now you are all certified to come and help!
As always, thanks for your thoughts and prayers. We made it through the worst of the nausea (a little worse off than last time, but still not too bad considering.)
All,
White Blood Count 12.2 (Down from 42.2)
Red Blood Count 3.27 (Up)
Hematocrit 29.4% (Up - No transfusion required yet!)
Hemoglobin 10.1 (Down)
Platelet 44 (Down)
UCLA 34
u$c 17
Streak 8 Years
More blood work today. My white counts are still going down (4.5). Once they start the trek back up, then we can do the Apheresis, until then, we watch and wait! My Hematocrit (Red Blood) went down again today. Since it is now below 29, tomorrow I get two units of red blood cells. It should take about 4 hours and go pretty easy. Of course, we'll do counts again tomorrow.
Other than that, not much else to report. I have more energy today, which is surprising given my decreasing counts. I finally got my haircut. Lori tells me I now look like a marine. If anyone needs a short haircut, Lori can give it to them! It will definitely take some getting used to ... not having a long mane!
As always, we'll be in touch. Thanks for the thoughts and prayers.
I am presently sitting here receiving my second unit of blood at Stanford. One already in one in progress. Then I can be disconnected and released. They are talking about possibly giving me a unit of platelets, but they aren't sure yet. Just have to wait for the word from the doctor. My white counts are still dropping, it looks like we are nearing the cusp, but haven't found it yet. I would imagine we will bottom out tomorrow (Tue) or Wed at the latest. The white counts seem to be about a day behind the platelets, which are still falling. Of course, if I get a platelet transfusion, this will really mess up all of the trends and results.
What this means, is that I expect to spend Thanksgiving morning with my wonderful wife at Stanford. At least 4 or 5 hours or so. Sounds like fun, doesn't it. After that, a big turkey dinner. My taste buds sure are ready for that.
Just got the word. They don't want to transfuse platelets today. They would rather see what my counts do by themselves tomorrow. So, today I'll just get the 2 unit of Red Blood cells. Tomorrow, they will do my counts, I'll wait, and depending upon how they come out, they may (or may not) transfuse platelets. Isn't the exact art of medicine exciting!?!
Once again I am attaching the blood work file for those of you interested I that sort of thing.
Thanks as always for your thoughts and prayers. If we don't communicate before then, have a great Thanksgiving.
My white count is up! We start Apheresis tomorrow!!!!! I figured as much given how much my lower back was hurting (due to the production of white cells).
The plan for tomorrow is
As always here is the attached spreadsheet. (FYI, yesterdays results were pre-blood transfusion.)
Just a quick clarification.
The Apheresis process typically takes from 2-5 consecutive days. They can only get so many stem cells out in each 4-hour process. There is a specific number of cells they need to collect, based on body size (height and weight). At the end of each day they count up the cells. Once you have enough cells they are done.
From talking to people, it seems you get the most cells the first day. Each day thereafter, you get about the same number of cells (which is each less than day 1). After the second day (Thanksgiving) we should be able project the completion date.
Hopefully this clears things up. We expect to be done with Apheresis by Sunday. Then we rest.
At this exact moment in time I am sitting in a chair, 51 minutes into my first stem cell collection. Each collection cycle is 210 minutes long. You do the math as to how much longer I need to stay sitting in this chair! This morning I got a transfusion of platelets, since less than 20 is considered to be critically low. Of course, we got the results back from this mornings cell counts and my platelets were 28, thus indicating I didn't really need a transfusion. Oh well. It only took 30 minutes. No harm, no foul. We'll see what the counts turn out to be tomorrow.
The target goal for stem cells in my case is 208.2 (million). This is three times my body weight in Kilograms. We won't know how much we collect today until about 2-3 hours after we finish collecting. So, by tonight we should have some idea of today's counts. I will need to keep collecting until we exceed 208.2. So keep praying for this number. (I have also added this progress to the Blood Count charts.
My white count continues to climb as it is still being stimulated by the Neupogen. I can tell that it is working based upon the bone pain. Think of your bones as a pressure cooker. Think of bone marrow as the water inside the pressure cooker. Think of the cells being produced as the steam generated inside the cooker. Now think of the small hole on the top where all the steam has to escape. This is the path to the bloodstream. As the heat builds up, so does the pressure, but only so much steam can escape. The rest is transferred to increased pressure. To complete the analogy, cells are produced inside the bones and must escape to the bloodstream. The surplus of cells, which cannot escape, builds up as bone pain. The areas I tend to feel this most is first, the lower back followed by the hip sockets. It may also go to the knee and elbow sockets, although I have rarely felt discomfort there.
In tomorrow's note, I'll let you know how today's stem cell collection went. Of course, most of you won't get the email until later in the week, as tomorrow is Turkey Day! So, enjoy yourself and have a great Thanksgiving.
Well,
I said I would mail the results tomorrow, but as I just got them today, I figured I would send them now.
Stem Cells Required: 208.2
Stem Cells Collected: 1100
Yes, that is correct 1100, 5 times what was required. So, no more Neupogen.
No more daily blood tests, and no more Apheresis!
All,
I know you are looking for your Chemo Update Fix since you haven't got one in a while and are probably in withdrawal.
I'm feeling fine.
I'll drop you another line later in the week as we firm up the schedule.
Reader's Digest Condensed Version: I'm fine.
Since it's been a while since I wrote a long-winded letter, I figured I should do so again. First let me describe the conditions at this moment in time ... It's so California in the 90's. I am writing this from my laptop by candlelight as the power has been off for the whole night. Go figure. Lori and I had a firelight dinner and had a great time. Now onto the Chemo stuff.
I met with my local Oncologist today. We are all agreed that we will start the massive Chemo in January. The earliest we could coordinate schedules to start was December 14. That would lead to the transplant on December 21, followed by a rough 10-14 days. This was just not the way we wanted to spend the holidays. (If you remember the original schedule, I was supposed to be just about complete with the Stanford Chemo about now, with the transplant occurring on Monday.) We lost one week due to the Hickman and the insurance company, and a second due to the fact Dr. Horning is so well known. She is attending a Conference this week and I won't be able to see her until the 11th.
Next week, I will probably have Chemo of some sort. Until Dr. Tseng and Dr. Horning can discuss it, the exact nature of the Chemo is in limbo. We are hoping (expecting?) to do some sort of minor hold-over Chemo, Dr. Tseng was going to put me through another round of DHAP ... which Lori and I definitely are not ready to go through again, especially if we don't have to. So, until sometime next week...
We went through the CT scans. If you look at the last one, November 10th, you wouldn't know that there was a tumor. It has shrunk that significantly since the previous CT scan, October 10th. No wonder Dr. Horning is ready to go ahead with the transplant treatment. When we do the next CT is also under discussion. At this point it looks like it will be done two weeks following the next Chemo, or maybe next week. As I said lots of things are under discussion.
My platelets have rebounded greatly since the last time. My white cells have dropped back into the normal range, as expected since I am no longer taking Neupogen. And my red blood cells are starting to climb. I am attaching the graph for those of you who are interested.
We'll write to you later when we know more.
Thanks again for your thoughts and prayers. We know they are working.
Just wanted to drop you a line as I have new information to share. I will be going in for Chemo tomorrow (Thursday) for my interim or holdover Chemo. Since my Oncologist is off on Wednesdays, I got the information second hand, so I am not sure of all the details but it sounds like they will be putting me through two sessions of MOPP. One this week and one next week. I am basing this on the standard MOPP treatment, but could be wrong.
This Chemotherapy regimen shouldn’t be too bad. It looks like one sort of bad drug, although I don’t remember feeling too bad after taking it last time, called Nitrogen Mustard. For those of you who weren’t around then, Nitrogen Mustard was developed during WWII as a chemical weapon. Who says good things don’t come out of military research. The second drug shouldn’t be to bad. I received it during the even weeks of my Stanford V regimen 3 years ago. The drug is called Vincristine. As I said, I am taking an educated guess about the drugs, so may be incorrect.
I also want to let you know that our Web page is barely online, but it is there. At present there isn’t much content, but I do have all of the old Chemo Updates, the blood count graph, and the Excel spreadsheet of blood counts (for those of you who have trouble receiving it elsewhere). The URL is http://www.mljanz.com We’ll be adding more content as time allows.
I should have more information by the end of the week as I am going in for Chemo tomorrow, and meeting Dr. Horning at Stanford Friday afternoon.
I started my "Hold-Over" chemo today. I was close in my guestimates from yesterday, but not exact. I will be going through on full cycle of MOPP/ABV. This is a hybrid of the two standard Hodgkin’s Disease treatments MOPP and ABVD (Yes, the "D" is intentional). The first week I am taking MOPP without the Prednisone and the second week I take ABVD without Dacarbazine (the D). For those of you who aren’t completely fluent in these protocols, I’ll summarize below.
MOPP/ABV
| Drug | Days | Dosage | Taken | Heritage |
| Mechlorethamine (Nitrogen Mustard) | 1 | 6 mg/m2 | IV | MOPP |
| Vincristine | 1 | 1.4 mg/m2 | IV | MOPP |
| Procarbazine | 1-7 | 100 mg/m2 | PO (x2) | MOPP |
| Doxorubicin (Adriamyacin) | 8 | 35 mg/m2 | IV | ABVD |
| Bleomycin | 8 | 10 mg/m2 | IV | ABVD |
| Vinblastine (Velban) | 8 | 6 mg/m2 | IV | ABVD |
My doctor is giving me slightly lighter doses than those recommended above as we are only trying to maintain the status quo and not shrink the tumor much more.
I have taken all of the drugs before (except Procarbazine). From my previous experience (now available on the Web page), I don’t recall too many problems the first couple of weeks on Stanford V. The worst expected side effect is Fatigure, but hopefully the minor dose will minimize this. I am also taking anti-nausea drugs as a precaution. The worst thing (not a side effect) is that I can’t drink any alcohol while on the Procarbazine. This is because this drug contains the same stuff that they use to get people to stop being alcoholics. (It causes you to throw up when you drink!)
The basic expected side effects are:
I’ll let you know as the symptons, side effects, and information change!
Well, here is the info you have all been waiting for. THE PLAN
Here is the plan as of today. It is always subject to revision based upon how well my cells rebound from the current Chemo I am on, etc.
We are planning on starting the Chemo about four weeks after the start of the current round. So here are the dates.
| Jan 5/6 | CT Scan |
| Jan 8 | Meet with Dr. Horning for Final Go-Ahead |
| Jan 12 | Check into Stanford (Day -6), Receive BCNU |
| Jan 14 | Receive VP-16 (Day -4) |
| Jan 16 | Receive Cytoxan (Day -2) |
| Jan 18 | RECEIVE STEM CELLS (all 1.1 billion of them)
DAY 0 - Beginning of my new life) |
| Jan 19? | Go Home? Depends on how I'm feeling as to when I'll go home |
| Jan 19-Feb 2 | Wait and watch for Stem Cells to take root and grow white Cells |
| Jan 19-Feb 19 | First 30 Days of recovery.
Travel to Stanford every day. Home care nurse every night. |
As to my current Chemo regimen, I’m a little tired, but not too much. Nausea is under control. So in other words, not much to report!
Here it is again the Chemo Update and other assorted sundry asides. I guess we should start with the Chemo stuff since that is what you are all (not) paying for.
Today is the fifth day following the start of MOPP. Things could have gone a lot worse, but of course they could have been better. I have been only mildly fatigued. Last time following the first round of Chemo I was sleeping 18 hours a day. This time around I am sleeping only about 10-11, mostly at night. Only a couple of times has my body shut down and I’ve needed an afternoon nap. For those of you not familiar with the experience, "shutting down" is exactly the right term. It is like a switch, one moment you feel fine, the next you are exhausted, with no transition period whatsoever.
The other side effects I have had are mild nausea, which seems to have dissipated and hasn’t bothered me in the last two days. My throat is also extremely sore. This is probably the worst side effect. It is like it has been rubbed raw. But starting today it has gotten better. I have also had some extremely sore wisdom teeth. However, these were removed when I was 20! But they are still sore. That’s basically it in terms of side effects.
I am still taking my twice a day, no alcohol, pill. I think it is the doctor’s way of making sure I’m not drinking! I’ll be seeing him again on Thursday for my next dose of Chemo … AVP. I am hoping that it too will be a light dose and will only slow me down, and not floor me.
I’ll be feeding you more information after Thursday. I should also have updated blood counts as they are required for Chemo.
Yesterday I started/completed my final round of Chemo before the High Dose Chemo ordeal we will undergo January 12 (assuming all looks according to plan). My blood counts actually rose across the board last week, with the exception of platelets which are still normalizing from the transfusion. They are "technically" low, but not anywhere close to dangerous levels.
All three drugs I took yesterday, I have taken before, albeit in slightly lower doses and in a different combination. Just like last week, two of the three drugs are expected to cause hair loss. The theoretical date of loss is 18-21 days from administration of the drug, so, we’ll see if my hair survives till Christmas. It’s going to be close! I experienced some, controllable, nausea yesterday, and this morning it is much better. No pains, in fact my throat is much better and my wisdom teeth don’t hurt!
As usual following a Doctor's office visite, I have updated the blood counts.
For those of you going on vacation and not checking for email, have a happy holidays. I probably won’t be writing as much over the next couple of weeks as there will (hopefully) be not much to report. Thanks again for your thoughts and prayers.
Since I haven’t written in quite a while, I figured it was time to send out a quick note.
I am feeling fine. Most of my fatigue has disappeared, although Christmas looked touch and go for a while. I have been feeling fairly good since Christmas day (Yay!) We are still on target for the January 12th start of the Massive Chemo. No tests are scheduled until January 5, nor is any Chemo, nor anything else! We won’t know for sure if we are going to start on the 12th until January 5 (Friday) when we meet with Dr. Horning for the final go-ahead.
We went to Stanford today and met with Doctor Horning. Based on the CT scans we took on Tuesday, which showed no real change in the mass and the bloodwork we took today, which is all in the acceptable range, we are on schedule to start next Tuesday, so the clock is running. Ten days from now, I will be welcoming back my long, lost (prodigal) stem cells.
From what I understand, the next couple of weeks will be the worst, but while I am in the hospital, I will have the advantage of IV fluids and drugs to control the side effects. We would appreciate those of you who are praying for us would keep up the good work. What we are looking for now is blessings on the team of doctors who will be working on me and for mild symptoms.
While I am in the hospital, I will try to keep up with the distribution, via my wonderfully supportive spouse, but she may need to take up the reins. She will also be bringing me my emails, as I don’t expect to have any direct email access. Please do not send flowers to the hospital as I will not be allowed to have them.
Having said that much, you are probably asking, "Mike, how long will you be in the hospital?" The answer is still relative. I will be in a minimum of one week and a probable maximum of one month. It all depends on how well I handle the Chemo. Here is the projected schedule.
| Date | Day | Event |
| 1/12/99 | -6 | 9:00am Check into Stanford Hospital
High Dose Chemo Round One (BCNU) |
| 1/14/99 | -4 | High Dose Chemo Round Two (VP-16) |
| 1/16/99 | -2 | High Dose Chemo Round Three (Cytoxan) |
| 1/18/99 | 0 | Stem Cell Transplant |
| 1/19/99 | 1 | Earliest Discharge Date |
| 1/29/99 - 2/2/99 | 10 - 14 | Typical time for white Blood Count to start coming up. |
Any dates beyond this are pure speculation at this time. So, I choose not to speculate!
One other thing I forgot to mention, while I am in the hospital, I will not be able to have many visitors outside of Lori. This is to protect me from catching any colds, diseases, etc. while my immune system is compromised.
Thanks for all of your hopes and prayers. Don’t forget to plan on attending the BIG Post Stem Cell Transplant Party we are going to have in June or July. You are all invited. We’ll let you know the dates a little closer to the actual date!
Next week we will be starting a new blood count spreadsheet and link.
