|
Mike's Chemotherapy Update Letters
|
Bloodwork |
March 26, 1996 - Week 1 (The Beginning)
Dear Family and Friends, As you are probably aware, Mike has recently been diagnosed with Stage IIB Hodgkin’s Disease. This is after five months of countless blood tests and drugs, four specialists (if you need a recommendation on an Asthma/Allergy Specialist, Pulmonologist, Thoracic Surgeon, or Oncologist, let us know), one surgery/biopsy, and four CT scans. Since we don’t know who knows what, we have decided to write this letter to bring you all up to date on Mike’s condition and to make sure everyone is equally informed as to what is going on. "What is Hodgkin’s Disease?" Hodgkin’s disease is a specific type of Lymphoma (Cancer of the Lymph node system) which afflicts approximately 1% of all Cancer patients. In the United States, this equates to about thirty individuals out of every million people. In addition, it is most common in 25-35 year old males. "What is the treatment?" Hodgkin’s disease can be broken down into four stages (I-IV); Stage I impacts only one lymph node, Stage II affects multiple lymph nodes on the same side of the diaphragm, Stage III impacts nodes above and below the diaphragm, and Stage IV affects organs outside the lymph system (i.e. stomach, bone marrow, etc.). Of course, this is broken down further by symptoms. No symptoms is classified as A, some symptoms (i.e. sweats, fevers, etc.) are classified as B, etc. The treatment protocol for Hodgkin’s Disease is either Radiation Therapy (Stage I and IIA) or Chemotherapy, with or without Radiation Therapy, (Stage IIB and up). Since Mike is Stage IIB, his treatment will be Chemotherapy, with Radiation Therapy to be decided following the completion of Chemotherapy. The specific Chemotherapy regimen Mike is receiving is called Stanford V (you can guess where it was developed) and is a twelve week protocol, with Chemotherapy given once per week. This treatment was developed from the other standard Hodgkin’s Chemotherapy protocols to minimize their side effects (i.e. secondary cancer, etc.) and treat the disease more efficiently and smartly. At this point, Stanford V has a 100% cure rate for Stage II patients; the other protocols are similar at 95% but over a 24 week period and with more potential side affects. "How does Chemotherapy affect the body? The answer we receive ever time we ask this question is, "Chemotherapy affects everyone differently." There are a few givens: (1) Chemotherapy affects the bone marrow which severely impairs the bodies ability to fight disease (hence Mike is taking about six drugs to beef up his immune system); (2) Chemotherapy kills fast growing cells (i.e. hair) so there is a good chance Mike will be bald in the not to distant future! In addition, Chemotherapy may cause numerous other side-effects, many of which are either unlikely or even contradictory! Mike has started Chemotherapy on March 25th, and will be finished on June 10th. From there we will know if he has to do continue on to Radiation Therapy or not. We would like to thank you so much for your thoughts, cards, gift, prayers, and phone calls of support. It is wonderful knowing that you are all thinking of us and that we have so many people to turn to if something comes up.
April 1, 1996 - Week 2
Well, having completed Chemotherapy Week #1, we can now safely determine which the first series of side effects are: (1) Major exhaustion, I guess we were just too tired to include this in the last letter. Mike has tended to sleep about 18 hours out of every 24. If you call and we don’t answer the phone, we are probably asleep. (2) Joint pain. Mike complains that he has had his wisdom teeth taken out again. This tends to be able to be cured with large amounts of Vicodin! In talking to people, doctors, nurses, etc. it appears that the worst of the medications will be delivered during the first, fifth, and ninth weeks of the treatment. This is mainly Nitrogen Mustard (something which sounds helpful to be running in the veins!) However, this is only given three times as opposed to as many as twelve in other regimens. For those of you interested in this sort of thing, we have attached the Chemotherapy regimen to this note. The top seven drugs are considered anti-Cancer. The bottom ones are used to help fight infection, make life more bearable, and the like. As you can imagine, just keeping track ofthe drugs is a full time job! It is extremely likely (i.e. 95% plus) that Mike will undergo six weeks of radiation therapy beginning at week 14 to finish off the cure. Also, for those interested, we can provide you with a copy of the research on this protocol. Please note, Mike does not have "Bulky" or "Advanced-Stage" Hodgkin’s disease. These are both considered worse than Mike’s condition. The primary reason for using this protocol is (1) it takes half the amount of time, (2) it minimizes the downsides of other regimens, and (3) its positives are equivalent, if not better than other treatments. Stanford V Chemotherapy Regimen for Hodgkin’s Disease Nitrogen Mustard (Mustragen) 6 mg/m2 IV Weeks 1, 5, 9 Adriamycin (Doxorubicin) 25 mg/m2 IV Weeks 1, 3, 5, 7, 9, 11 Vinblastine (Velban)+ 6 mg/m2 IV Weeks 1, 3, 5, 7, 9, 11 Vincristine (Oncovin)+ 1.4 mg/m2 IV Weeks 2, 4, 6, 8, 10, 12 Bleomycin (Belnoxane) 5 u/m2 IV Weeks 2, 4, 6, 8, 10, 12 VP-16 (Etopside) 60 mg/m2x2 IV Weeks 3, 7, 11 Prednisone* 40 mg/m2 PO QOD (Every other day) Compazine 10 mg PO 4x/day (Anti-Nausea) Ketoconazole 200 mg PO 1x/day (Anti-Fungal) Sulfamet/Trimet 800/160 mg PO 2x/day (Anti-Infection) Acyclovir 200 mg PO 3x/day (Anti-Viral) Docusate Sodium 250 mg PO 1x/day (Stool Softener) Zantac 150 mg PO 2x/day (Antacid) Vicadin (Hydrocodon/APAP) 5/500 mg PO 4x/day as need (Pain reliever) Ambien 10 mg PO 1x/day as needed (Sleep aid)
+ Reduce Vincristine to 1mg/m2 and Vinblastine to 4 mg/m2 weeks 9-12 for patients >= 50 years
* Taper 10 mg QOD weeks 10-12
April 9, 1996 - Week 3
Two weeks down, ten to go! Of course, last week had a different series of side effects than the first. First off, the exhaustion level is down, only sleeping about 6 hours a day instead of the previous 18! However, when exhaustion hits, it sure does knock Mike out. Secondly, the joint pain has moved from the teeth to the hips and then onto the wrists. It’s truly kind of weird not knowing which joints will be sore on any given day. Thirdly, nausea and the first substitution of pills. We have gone from Compazene, a relatively common anti-nausea to Zofran, a drug which is designed exclusively for Chemotherapy and a price tag to match ($20 per pill, thank goodness for insurance). This week Mike got two Chemotherapy treatments instead of the usual one. Basically this is due to the design of the drug and the cell reproduction rate. We want to hit it a couple of times to knock the Cancer back down. Not much else to tell at this point. Mike will be getting his first follow-up x-ray this week so hopefully more information on this next week. At this point his tentative return date is July 1 following the completion of the Chemotherapy and the start of Radiation Therapy. More info to come next week.
April 18, 1996 - Week 4
At this point I am now 1/3 of the way complete with my Chemotherapy treatments and have just completed my first cycle. The entire Chemotherapy protocol consists of three cycles, each four weeks long, for a total of twelve weeks. At the end of the twelve week there is a two week break and then onto Radiation Therapy for four to six weeks (duration TBD) and then the big PARTY! So what have I accomplished over the past several weeks? I have completed a 30 day trial membership to AOL. Not too bad, next onto CompuServe. I have completed the computer game "the Dig", somewhat similar to "Myst" in character, but the graphics aren’t nearly as good. I have read several books. And last, but definitely not least, I have succeeded in continuously spoiling the kitties! (I’m not sure they’ll ever forgive me when I go back to work.) In addition to the accomplishments listed above I have experienced new a different side effects, and have decided that I will probably get completely new ones every week. Wrist pains gave way to swollen and sore hands, exhaustion came and went at will (which is not what happened two weeks ago on the same treatment), and most, but definitely not all, of my hair has fallen out, nothing a bit of restyling can’t cover at the moment! According to my Oncologist, the chest x-ray shows that the tumor is shrinking, although Lori and I had a hard time noticing this. We will do a follow-up CT Scan in about 4-6 weeks which should really show the difference. Even I can read a CT Scan. Next week it is into round 5, which is the same as the first round, definitely not my favorite. We appreciate all of your cards, notes, calls, and prayers. I am enthusiastically looking forward to that day in the near future when I can return to society and a "normal" life. In the meantime, I am navigating that well lighted tunnel and heading towards the light!
April 24, 1996 - Week 5
Time to mark another week off the calendar! Only seven more weeks of Chemotherapy to go. The great news is that next week is the halfway point in the Chemotherapy regimen. Additional good news was received this week. The official reading of my chest x-ray came out "Normal". Hip Hip Hooray. (Of course it looked normal in December too.) This at least means that the growth is now small enough not to show up on x-ray. When we do the next CT scan, we’ll have a much better idea. The other pieces of good news is that my red blood cell count is holding steady (I’m still slightly anemic, but I have been since this began) and my white blood cell count more than doubled last week (from 2900 to 7700). Of course last week’s Chemo wasn’t supposed to attack the white blood cells. OK, now onto the standard side effects paragraph. Let’s see, my left hand swelled up like a balloon, so much in fact that my knuckles were dimples. It turns out that my veins are very sensitive, much more so than most people, to the Chemotherapy. My left wrist is just about normal (i.e. no pain) again. It seems that first I get swelling in the hands/fingers and then it moves into the wrist. A little exhaustion hit towards the end of the week and bam it knocked me out, but after a good nap, I felt a lot better. Stir craziness has continued to set in, but I am finding things to occupy my time. A little work, definitely metered so as to not impact my recovery, a little exploring the internet, some computer games and hard drive cleanup, and very little TV. Trust me, there’s absolutely nothing on during the day except for talk shows and soap operas! Thanks again for your thoughts, prayers, calls, cards, gifts, words of encouragement, etc.
May 2, 1996 - Week 6
Well, we have reached the midpoint of the Chemotherapy sessions... Week 6 out of 12! It must be all downhill from here. For the most part, last week wasn’t nearly as bad as expected. Last time I had this same regimen (Week 1) I was out of it all week. This time I was pretty good up till about Thursday, and then I got really tired through the weekend. But at least there were no real serious side effects. My white blood count plummeted, as expected, to its lowest low (2400), but this week it should rebound. My red blood cell count is about a pint lower than when I started. The good news is that I still have about another pint to go before it impacts my therapy. The most interesting side effect experienced to date is numbness on the bottom of my feet (due to the Vincristine). It is really kind of strange. When I told my Oncologist, he asked my if I’m "ripping over my feet yet?" Not yet! This week at my Chemotherapy session, I was so tired I almost slept through the whole session. They don’t let me sleep while they are doing the injections, but they don’t seem to mind once they are running in the saline to clean out the veins. Lori found a new friend to talk to while I was just zoning out. I am continuing to find ways to keep myself busy when I’m not sleeping. Thanks to all for the books and games.
May 9, 1996 - Week 7
Well, this marks the start if the second half of Chemotherapy. Of course, if you look at it in terms of IV’s it’s nine down, six to go. Currently there is a race going on between my veins and the number of IV’s left to go. This is due to the fact that my veins have not behaved that well (they appear to be extremely sensitive to the Chemotherapy drugs), but we are getting better at preserving them. Monday was definitely not the high point of my Chemotherapy regimen. First off, the lab didn’t process my blood work STAT, they shipped it off to the main plan instead. Therefore, I got to give more blood at the doctor’s office to verify I still have enough blood to continue. Then my veins didn’t want to cooperate with the nurses (this is a first) which resulted in three more pricks until we got a good vein to work with. So, instead of my usual two stabs, I got five instead. I hope this isn’t a trend! My oncologist has informed me that we won’t be taking any more x-rays until we are done as they won’t reveal anything as the last one was normal. We will also not be doing the CT scan until completion of the Chemotherapy. At that point, he will do a completed set of x-rays and CT scans to document the case. He will then present the information up at Stanford to determine if Radiation therapy is necessary. (The odds are good as all the other cases under the study he gave me underwent this!) The other good my doctor gave me is that my blood counts are looking very good for completion of the Chemotherapy in the standard twelve weeks. He informed me that most patients blood counts drop too low and blood cell production needs to be stimulated prior to continuing. My counts look good and are not dropping fast enough to merit much concern for the future. Let’s see, side effects. Pretty much the standard series of side effects. One day of cramps, lots of tired days, and I think my hair is starting to fall out, again. I should know much more in the next couple of days. Thank goodness for my new hat collection!
May 16, 1996 - Week 8
I have now completed my second trimester of Chemotherapy. As you recall, I receive three cycles of the four week Chemotherapy regimen. I have completed two of those and will start the third and final four weeks (five injections) next week. It feels so good to be so close to being done. he only apparent medical/physiological challenge left is my veins. Early on in the therapy, we managed to "destroy" most of my large veins with the Chemotherapy. This has become a critical issue as many of the IVs must be injected into a good vein to prevent any possible leakage, which could require skin grafts, etc. to fix. With only two really nasty IVs and three not so bad IV's to go, we are pushing forward, but every week is a sigh of relief. Monday, prior to Chemo, was probably the best day I have had in a long time. Probably as good as any prior to the start of my whole cough. Then I went to chemotherapy where they doped me up with Benedryl and Decodran which just about knocked me out! This weeks side effects haven't been too sever. Moderate stomach/intestines cramps, sore wrists, dry mouth/throat (although less than last week), and it turns out I haven't lost any more hair!
May 28, 1996 - Week 9
On the ninth week I slept. . . . . Well, last week I started the last cycle of chemotherapy. This week I took off! Actually, it wasn’t a voluntary vacation (I thought I would only get one extra day due to the holiday), but due to low blood counts we have had our first setback. It could have been worse, they really expected something like this a few weeks ago. So where do we go from here? For starters, my chemotherapy has been delayed for one week. I should now have my last IV on June 17 (as opposed to June 10). Second, this week I get shots every day to stimulate my white (Neupogen) and red (Procrit) blood cell production. Third, next week will be week 10 of my treatment. Finally, radiation therapy will probably not start until after the fourth of July weekend, but we’ll see the exact date. Other than this what has been happening? Last week was extremely tiring, probably in part to being so low on blood, and in part to the odd week chemotherapy. I spent most of the week asleep! The numbness in my feet is about the same, but my fingers are becoming more numb. (My right thumb and 1st and 2nd fingers are numb up to the first knuckle) and my left 1st finger is numb on the bottom. This is a "normal" side effect and should go away after some indeterminate period of time following the completion of chemotherapy. I have a few (about five or six) new stripes on my right arm due to the last chemotherapy session. I’m not sure I have any good veins left there! Of course, I only need one real strong vein (for week 11), the other two weeks they can use smaller veins. The following is my blood count chart for those of you who are interested. You will notice my blood counts tend to rebound following even week treatments and plunge following the odd weeks!
June 6, 1996 - Week 10
It seems that I now have blood again in my system and have been able to continue on with my Chemotherapy regimen. There are only three more injections left to go until I am complete. Yahoo! I have two injections left for next week, which will finish off the nastiest of the drugs, and then one the following. In addition, this week we began to taper off the Prednisone. From there it is on to Radiation Therapy for about four weeks. Then all of the follow up visits for the next five years. At least it’s a cure! Back to the side effects. It turns out that one of the side effects I was attributing to even week Chemo (severe cramps) was actually a delayed odd week side effect. I found this out last week when I didn’t even have Chemo but had side effects instead. It was really strange. Do you know how difficult it is to type with numb fingers? I am really finding this out this week! Thank goodness for spell checkers or you would never be able to read this. I am still sleeping a lot in the morning, but am generally up in the afternoon, albeit I may not be too energetic. I am trying to do a few things around the house, mainly to avoid soap operas and talk shows, but it is on a day by day basis. Some days I feel pretty good and some are not so good. This hot, smoggy weather also plays a part in this as well. I don’t seems to tolerate heat as well as I did prior to having Hodgkin’s Since I have gotten such positive feedback on my graphs (why do people just love charts?) I am including the update here. I’m sorry I don’t have the exact units which go with each measurement, but I do have the "normal" ranges for those who are interested. White Blood Count 4.0-10.8, HCT (Red Blood Count) 40-56, Hemoglobin 13.5-18, and Platelets 140-450. Please keep in mind that these are for a normal male. I don’t have the equivalent female numbers (nor do I know if they are different, actually).
June 12, 1996 - Week 11, Day 80
Yes I have been going through Chemotherapy now for 80 Days. (Eighty!) Time sure flies when your not having fun. Only five days to go until my next and final Chemo session. As of this week we have completed all of the worst drugs: Nitrogen Mustard (5/20), Vinblastine (6/10), Adriamycin (6/10). and VP-16 (6/11). In addition, I have been tapering off the Prednisone now for just over a week and will be off of it as well next week! That just leaves my last two even week drugs and I will be done with this stage of treatment. Then on to radiation therapy. This week I will be getting another chest x-ray, and next week I will be getting a CT Scan. This will allow the radiation therapist to determine the exact field, dosage, coverage, and number of treatments of radiation to best finish off my recovery. I have heard from some people that RT (Radiation Therapy) makes them tired, and others that it doesn’t. So just like everything else we will be playing this by ear! Last week wasn’t too bad, I can’t recall any significant side-effects (other than the usual numbness, a few cramps, etc.) so I will call last week a goo week. To date this week appears to be going well for an even week, but I am only two days into it, so there is still plenty of time for that to change. I have been a little less tired, which is probably due to stabilizing my blood. As you can tell I am still extremely anemic 26.6 (normal is 40-46) but at least it isn’t dropping. It does take Procrit about 2-3 weeks to take effect, and I’ve been taking it for just over two weeks now. I will continue taking this until my blood counts are back up to normal, although I’m getting tired of weekly blood tests! We will also start Nupogen again for the rest of this week to insure my white counts don’t drop too low to finish next week. As you can see they fell to normal levels this week. I really don’t want another delay at this point.
June 17, 1996 No Chemo This Week
No Chemo this week. Blood transfusion instead!!! More info to come later. The best laid plans …
June 20, 1996 - Week 11 (again), Day 88
You know what they say about the best laid plans. . . . This was supposed to be the final week of Chemotherapy. Last week we looked at the numbers, determined things were going to be close, and took all of the preventative measures possible (e.g. took shots to stimulate the white and red cell growth). I felt good on Monday, but my blood tests showed I was at the lowest counts during my Chemo. We all believe it was adrenaline keeping me going. So, no Chemo last Monday. I did continue the shots however. Tuesday I got a blood transfusion (3 pints). This was not the most fun exercise I have ever been through. Mainly because my veins are not nearly as good as they used to be! It took approximately twelve hours (yes: 12!) for the infusions to occur. We actually had to force the blood into my system by placing the new blood in a pressure bag to force the flow. Although it was not the most fun procedure, it is now done, and everyone has told me I’ve given up my pasty white complexion. In addition, many of the bruises I have had have disappeared or faded I’ll tempt fate and say that next week I may complete Chemotherapy. I’ve stopped expecting it to occur on schedule as it is very disappointing when it doesn’t happen. (In fact, the nurses commented that they don’t think they’ve ever seen anyone more disappointed to not receive Chemotherapy!) If I don’t complete next week, it will be the following week, or the week after, etc. But let’s aim for next week. I had another normal chest x-ray last week which is encouraging as it shows the growth (if it is still there) is too small to see on the x-ray. I will have a CT scan after we complete the next round of Chemotherapy and then we’ll know for sure. I will have Radiation Therapy once Chemo is complete. After we get the CT Scan back, I’ll meet with the new doctor and discuss the actual course of treatment. I was looking forward to returning to work in early July, but with the latest setbacks, this will not happen. May Doctor (Oncologist) is recommending I stay away (due to possible side effects) until I have completed my Radiation Therapy. Potentially, this could be through August, but we’ll play it by ear! Despite this, we are still planning for the Post Chemotherapy PARTY on Saturday, July 13 from 4:00pm till whenever. More details will follow in a flyer. Everyone is invited and RSVPs are especially appreciated so we can make sure there is enough food and beverages!
June 25, 1996 Session 12, Week 14, Day 92
DONE with chemo Well, we have finally done it! As you can probably guess, as of yesterday, we have completed all of the Stanford V Chemotherapy regimen for Hodgkin’s disease. This time has been difficult on my veins, and I have been informed that some will probably recover over time, but that others may not. We did, importantly, win the race with the veins. In other words, we got all of the chemo in, before all of the veins collapsed! There were a few occasions, however, we found veins on prayers! (i.e. we knew they were there, but just couldn’t see them!) As you can see from the (obligatory) graph below, the combination of whole blood transfusion (minus the white cells) and Procrit has really help my red blood cell count. I am still considered to be anemic, but not dangerously so, unlike last week. The Neupogen finally kicked in once we stopped killing it off with the Chemotherapy and my white count exploded to more than double the normal count! Everything else is doing its own sweet thing. So what’s next? Well first off, I need to have a CT-Scan of the chest. This will give us an extremely clear picture of exactly where we stand today. Hopefully the entire mass will be gone, but it may not be. Next, regardless of the CT-Scan, I need to meet with my new Doctor, a Radiation Therapist. Following that, I will begin my Radiation Therapy. This will be five days per week for approximately four to six weeks at Mission Oaks hospital. (I won’t know the exact duration until I meet with the Doctor. Long term, for the first two years I will continue to meet with my Oncologist on a monthly basis with x-rays every month a CT-Scans every six months. Post Chemotherapy PARTY on Saturday, July 13 from 4:00pm till whenever. Everyone is invited and RSVPs are especially appreciated so we can make sure there is enough food and beverages! I guess that about covers it for this week. Oh yeah, last week I slept.
July 2, 1996 - Week 15, Day 100
As you are all aware, I competed Chemotherapy last week. So no Chemo this week! Yay! Anyway, onto the good stuff. CT Scan. I had a CT Scan on Friday. (It was supposed to be Thursday, but the Scanner went down! I had already drunk my Barium Martini. Those of you who haven’t had one really should try one some time!) I guess you want the results. The scan came out as nearly normal. By "nearly", I mean that the large mass was gone. There were some strands on the CT Scan, but these could either be scar tissue or residual Hodgkin’s. How do we tell the difference? Well, we can’t. This is why we follow up with radiation. The purpose of radiation therapy is to turn any (if there is any) remaining Hodgkin’s into scar tissue. Basically we fry the area where I had Hodgkin’s before and toast the Hodgkin’s/Scar tissue. In the end it is all scar tissue. This will always be on the CT Scan, but since we will know what it is, it won’t cause too much worry. The only time we will need to worry is if it gets bigger. What does radiation involve? I will have 20 sessions, five per week, of radiation therapy. They will cover my central chest area (above the heart) and upper left shoulder, will last approximately one minute, and I will receive 36 cGy of radiation each. This is less than I would have received under other protocols and no major side effects are expected. Exhaustion is expected, as well as potentially a sore throat. I should recover from each week by the beginning of the next. At the end this will be followed up with another CT Scan. No blood test results this week so no graph. Sorry :-(
