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Last modified on
Tue Mar 12 2002 21:47:32 PST

Diary

Treatment



Index

June 2-8, 1997 July 7-13, 1997 August 4-10, 1997
June 9-15, 1997 July 14-20, 1997 August 11-17, 1997
June 16-22, 1997 July 21-27, 1997 August 18-24, 1997
June 23-29, 1997 July 28-August 3, 1997 August 25-31, 1997
June 30-July 6, 1997

September 1-7, 1997 October 6-12, 1997 November 3-9, 1997
September 8-14, 1997 October 13-19, 1997 November 10-16, 1997
September 15-21, 1997 October 20-26, 1997 November 17-23, 1997
September 22-28, 1997 Oct. 27-Nov. 2, 1997 November 24-30, 1997
Sep. 29-Oct. 5, 1997

December 1-7, 1997 January 5-11, 1998
December 8-14, 1997 January 12-18, 1998
December 15-21, 1997
December 22-28, 1997
Dec. 29-Jan. 4, 1998

Note: Chemotherapy days and weeks are shown in red above and below.

  • June 2-8, 1997

    • Monday - Had Gallium Delay Scan. This scan showed the spleen involvement although I couldn't get anybody to tell me until I met with the Oncologist again on Wednesday. Received Final Pathology report of Nodular Sclerosing (NS) Hodgkin's. Pathology took eleven days!

    • Tuesday - Checked in for port insertion at 6AM. Did surgery pretesting (chest x-rays, blood counts, blood oxygen saturation, EKG) in the morning before surgery. I liked it because it didn't require another trip. Hospital didn't like it. Surgery was performed with a "light" general anesthetic. Got to go home at 10 AM.

    • Wednesday - Saw Oncologist again. He told me about the spleen. He felt that radiation was no longer indicated due to the larger area involved. Will have a consultation with a Radiation Oncologist later to make final decision about radiation. The treatment plan is somewhere between 6 and 8 cycles (12-16 treatments) of chemotherapy (ABVD). Number of cycles will depend on whether there is any more progress between 4th and 6th cycles. Less cycles would be used if we decide to do radiation.

      Received first chemo (through my new port) as well as training. Got told about the million possible side effects. No side effects on the first day except for the expected orange urine. I started drinking my required 64 oz of fluids each day. Seams like I now spend my entire life either drinking or peeing.

    • Thursday - Stomach a little upset in AM. Nausea pill seemed to do the trick. Very tired for rest of day.

    • Friday - Had a pretty bad day. Lots of Nausea, no energy, vomited some. I think I will be more aggressive with my nausea medicine next time. Was too sick to drink all my fluids today.

    • Saturday - A lot like Friday, but not quite as bad.

    • Sunday - A lot like Saturday, but things are improving.


  • June 9-15, 1997

    • Monday - Had lots of muscle aches (felt like the flu). Shoulders, lower back, and ankles hurt the most. Also had an ache in my right ear. Was very uncomfortable all day.

    • Tuesday - Aches a little better, continued to feel a little better each day. Mary (wife) commented that my voice was back.

    • Wednesday - Went to Oncologist for blood counts. White counts below normal range, Red and Platelets in normal range. Decided to see Doctor because of my ear ache. He said there was redness in the outer ear. Said we should wait and see. Ache gradually went away. He also felt the lymph nodes under my left arm, said the were smaller. Chemo is working!

    • Sunday (Father's Day) - Had a nice day with my two sons!!


  • June 16-22, 1997

    • Tuesday - Noticed a patch of rash on the back of my neck. It doesn't hurt or itch though.

    • Wednesday - Time for a visit to the Oncologist and my second chemo treatment (treatment 2 of cycle 1). Dr. looked at rash and said it might be a boil, but that it was probably shingles. Said shingles doesn't always hurt. That's great news on the pain front!! He put me on a anti-viral (Acyckovir, 800mg, 3 x a day for 7 days). This helps reduce the effect of shingles if it is administered early enough. Now the not so good news. My white count had dropped to 2.2. That's too low to give me my regular dose of chemo. Although I was able to have my full dose of Bleomycin, I only got 1/2 the normal dose of DTIC, 1/4 the normal dose of Adriamycin, and no Vinblastine. I'm not very happy about the reduction, but white blood cells are important too. Starting Friday I will get a shot of Neupogen three times a week to help buildup my white blood count. If the insurance company okays it, I can do the shots at home. I wonder if I want to do that. Last, but not least, some confirmation of my belief that a patient should be as knowledgeable as possible. When they went to give me my Adriamycin today, I commented that they had not given me any Zinecard. The nurse said that Zinecard was not listed in the orders, but she checked with the Dr. on it. Dr. said he had inadvertently left it off, so they gave it to me. Since Zinecard provides cardio-protection for some of the ill effects of Adriamycin, I'm glad I noticed it. P.S. - I'm glad I have the porta-cath. It saved me two arm sticks, they had to draw more than a "finger-stick" worth of blood for testing today.

    • Friday - Got my first Neupogen shot. Cost me a grand total of $10 (office visit co-pay). Looked into giving myself the Neupogen shots, but cost would jump to $26 a shot! Apparently even the generic version of Neupogen is several hundred dollars per shot. Even though I only pay 10% for prescriptions, the cost to me would be $16 per shot higher.

    • Saturday - Aches returned today. I think the pain is centered in my Hip Bones. I had been told that I might have bone pain due to the pressure caused by the manufacture of white blood cells in the bone marrow. I suspect the pain in my Hip Bones is related to the damage done during my earlier Bone Marrow/Chip testing. Am also noticing more hair loss, especially from my beard. Am very tired, no energy, slept most of day.

    • Sunday - Had a nice day today.


  • June 23-29, 1997

    • Monday - Another Neupogen shot. Hip hurt again by evening.

    • Tuesday - Decided to beat the chemo to the rest of my beard. Shaved today.

    • Wednesday - Neupogen shot and counts. White count is way way up. Guess Neupogen works. Doctor says I don't need any more Neupogen until further notice.

    • Sunday - Rest of the week has been real nice. Figured the fourth of July might not be such a good day (two days after chemo), so we had our BBQ today. Kids made ribs, potatoes, corn, onions (from the garden), and beans. It was great!


  • June 30-July 6, 1997

    • Tuesday - Had an early dinner at Golden Corral. Got nausea about six hours latter. Vomited a couple hours after that.

    • Wednesday - Still felling under the weather today, but I am not throwing up any more. Saw Oncologist. Discussed some minor things with him (Old neck rash - gone; New rash on face where I was loosing beard hair - no diagnosis or treatment at this time; Wart like thing on the tip of one of my fingers - looks like a wart or other virus related thing, no treatment at this time). I also discussed the fact that I was still have some Nausea for a couple of days after chemo even when I took the Promethazine. Doctor gave a prescription for a stronger medicine (Zofran). One big drawback with Zofran is cost. Even though you take less Zofran pills, Promethazine costs me only a penny a pill (normal cost about 10 cents a pill). Zofran costs me $1.90 per pill (normal cost about $19.00 a pill). Blood counts are still good, got full dose of chemo again. Will have three or so shots of Neupogen during the next week to keep the white count up. Nothing special happened during the chemo except the nurse told me that "I listen too well" when I asked her a question. My wife has never listed that as one of my faults. I think I will be able to use that new information in the future. Continued to have no energy for the rest of the day. Slept all afternoon and most of the evening.

    • Thursday - Am feeling a little better today. Still don't have much energy. So far the Zofran is keeping the nausea away. Got a Neupogen shot today. Blew out the high pressure hose on the car air conditioning on my way home.


  • July 7-13, 1997

    • Monday - Really didn't feel like getting up and going into town, but had to get a Neupogen shot.

    • Tuesday - Finally felt like getting out of bed for more than a couple of minutes at a time. Seems that the chemo is keeping me down longer.

    • Wednesday - Got counts (OK, but WBC still nothing to shout about). Got Neupogen shot. Saw doctor about a couple of rashes/boil like things. He gave me an antibiotic.

    • Friday - Antibiotic looks like it's working. Got one more Neupogen shot today. Leg and hip bones started hurting like a SOB in the afternoon. Finally took Proproxy a couple of times to get through the night.

    • Saturday - Felt better by this morning. Had a good day.


  • July 14-20, 1997

    • Wednesday - Another chemo day (treatment two of cycle two). Counts look good and doctor was happy with progress. Antibiotic has pretty much eliminated my rashes and boil-like thingies. Will start Neupogen on Friday. This is now a standard part of my treatment. I feel great today. Much better to start my chemo experience feeling good!

    • Friday - Chemo aftermath has been pretty good. Was able to pretty much avoid the nausea by taking the right medicines at the right times. Still quite lethargic yesterday and today. Had a Neupogen shot today.

    • Sunday - Feeling pretty good today. Most of the tiredness is behind me.


  • July 21-27, 1997

    • Monday - Got another Neupogen shot. spent the rest of the morning going to two hospitals to pick up all my x-rays and CT scans. Need them for my appointment with a Radiation Oncologist on Thursday.

    • Wednesday - Neupogen and counts day. WBC was high enough that I don't need a fourth shot this time. Finally got my PCP referral for the Radiation Oncologist. Need to read up on radiation for my stage, etc. for tomorrow.

    • Thursday - Had a real interesting discussion with the Radiation Oncologist. He spent a lot of time carefully explaining some things about Hodgkin's in general and my situation explicitly. The key points are as follows:
      • Stage III is not necessarily worse than stage II. Stage III indicates that HD is both above and below the diaphragm. This may indicate a different treatment, but number of sites is a better indicator of the seriousness of the disease. I have four sites (chest, under each arm, and spleen). The spleen makes me stage III. If the fourth site was also above the diaphragm I would be stage II.
      • He spent a good deal of time going over the gallium and CT scans with me. It immediately became obvious that I should have read all of these reports myself. I am going to request copies of all these reports from my Oncologist.
      • The only indication of spleen involvement was my delayed gallium scan. The report indicated that the spleen had a normal uptake of gallium. This is a indication that the spleen is normal. However, the report also indicated that the spleen had a higher uptake than the liver and stated that this may indicate spleen involvement. So I may be stage IIIAS (with spleen involvement) or IIA (without spleen involvement).
      • If I had consulted with him before chemotherapy he would have suggested two different possible course of action:
        • Have a staging laparotomy. This is fairly serious surgery which includes removal and biopsy of the spleen as well as taking tissue samples of several other sites in the abdomen. This would have definitely determined whether the spleen was involved. If any disease was found in the abdomen I would have had ABVD and no radiation (my current therapy). If the spleen was not involved, then I would have had chemotherapy and radiation. I would have had no spleen in any case.
        • Assume the the spleen is involved and do what I am doing now (ABVD only).
      • I don't know what I would have chosen. But I have a much clearer understanding of the different stages and their treatment:
        • Stage II - treat with combined modality (limited chemotherapy and radiation to the known sites). This gives maximum chance of no relapse.
        • Stage III - treat with full course of chemotherapy. This gives maximum systemic treatment. Treats spleen and other possible sites in abdomen. Combining radiation and full chemotherapy is too toxic when there is no known remaining disease.
      • In any case I am pursuing the best treatment for IIIAS and at least a good treatment for II.

    • Friday - Am recovering from the large volume of Thursday's information. Started the seeds for our fall vegetable planting.

    • Sunday - Had a real good weekend!


  • July 28-August 3, 1997

    • Tuesday - Another chemo day (cycle 3, treatment 1). My normal Oncologist is taking the week off, so I met with the other Oncologist in his office. He isn't there on Wednesdays, so I'm doing it on Tuesday. Had a chest x-ray. Chest x-ray was normal! Apparently all of my chest tumor that is left is hidden behind my sternum. That means that the tumor is 1/3 or less its original size! Also, someone asked about my weight. Doctor told me at the beginning that I should get lots of calories and protein. I have been obliging with lots of red meat and plenty of ice cream. The result is I have been staying almost exactly my same fat self.

    • Thursday - Neupogen shot.


  • August 4-10, 1997

    • Monday - Neupogen shot. Feeling pretty good again. Seems that each treatment takes a little more out of me than the last one.

    • Wednesday - Neupogen shot and counts. WBC looks pretty good, no more Neupogen this go around.


  • August 11-17, 1997

    • Wednesday - Another chemo day (cycle 3, treatment 2). Continues to look like the chemo is being effective. My counts looked good, but my last kidney "function" test showed a possible problem. Took more blood to run the test again. Also eliminated bleomycin from this chemo as a precaution.

    • Friday - Neupogen day. Talked to nurse about latest blood test results. She said all kidney related items were in normal range.


  • August 18-24, 1997

    • Monday - Neupogen day. Still feel pretty wiped out from last chemo.

    • Tuesday - Finally feel like I have some energy again. It takes longer every chemo. Bent over funny today, now I have a new pain (in the front, on the right side, about the bottom of my ribs).

    • Wednesday - Got counts and Neupogen today. Counts are some of my best for day 8, but nurse says doctor want to continue with more Neupogen shots this series. Doesn't make sense to me, asked her to talk to doctor about what's different this time. Nurse didn't think I should see doctor about the new pain. Said to take Tylenol for pain (don't need it), and see how it goes. She said if it was something serious, the pain would probably be much greater.

    • Friday - Went in today for my fourth Neupogen shot. Saw Doctor first to get a better understanding of why a fourth shot was required. Doctor said that these shots tend to loose effectiveness over time and he thought I should be receiving four shots per treatment. Said that I had been getting off easy only getting three. I still think only three are needed, but I went along and had four. Doctor confirmed that my latest kidney related blood tests were OK.


  • August 25-31, 1997

    • Wednesday - Another chemo day (cycle 4, treatment 1). Talked to Doctor about lack of energy, shortness of breath, and high heart rate after treatments. He seemed to think that this was all probably normal, but is setting me up for a MUGA and PFT just to make sure. Am continuing to have various boil-like skin problems. He wrote a prescription for an antibiotic. Also discussed my lower "rib" pain with doctor. He seemed to think it was arthritis. Said that the chemo drugs exacerbate some kinds of arthritis.

    • Friday - Got a Neupogen shot.


  • September 1-7, 1997

    • Tuesday - Neupogen shot day. Couldn't have it Monday because of the holiday.

    • Wednesday - Another Neupogen shot day. White counts were 15.7 before this third shot, but Doctor is determined to give me four shots each treatment! I think he is shooting for triple digits!?

    • Friday - Fourth Neupogen shot. Bet my bones will hurt tonight. Will be interesting to see what my WBC is on Wednesday. Finally had my PFT (Pulmonary Function Test) and the MUGA that the Doctor asked for a week ago Wednesday. The approval had to go through my Primary Care Physician. Spent all morning in the hospital getting them done. Should be able to see the results on Wednesday when I visit the doctor. Bones hurt quite a bit by the evening. I was right about that.


  • September 8-14, 1997

    • Wednesday - Another chemo day (cycle 4, treatment 2). If all goes well, I am 2/3 of the way through treatment. Have had an upset stomach the previous two treatments. I vomited at the end of this treatment. Nurse gave me some additional medicine IV to combat the nausea. Discussed a number of things with the doctor on this visit:
    • Friday - Neupogen shot day.

    • Sunday - First day I felt like getting out of bed at all. Used to be knocked out Thursday and Friday. Now it's Wednesday through Saturday. Also the chemo does something to the way food and drink tastes. Everything tastes bad for about four days.


  • September 15-21, 1997

    • Monday - Neupogen shot day. Still don't have scans scheduled. Had to talk to several people at my PCP to get the ball rolling.

    • Wednesday - Neupogen shot day three. WBC only 6.5 which is down considerably from where it had been. Will need at least four shots. Finally have scans pre-certified and scheduled.

    • Friday - Neupogen shot day four. Doctor thinks four is enough, hope he's right. Got a new boil starting on my left side. Decided to see doctor about it. Cost me two hours. He was way behind already due to two unscheduled bone marrow biopsies. Gave me an antibiotic for the boil.

    • Sunday - Time to get ready for the CTs. Drank my 15 oz. of Ready-cat. Actually there is good news here. The Ready-cat has almost no flavor, but a pretty disgusting smell. I found it went down a lot easier if I held my nose. No food or drink after midnight.


  • September 22-28, 1997

    • Monday - This is the start of a busy week on the medical front. Started out my day at the hospital. Got to drink the yukki lemonade stuff (two glasses), had my CTs (chest, abdomen, and pelvis) injection and all. After the CTs they gave me the Gallium 67 injection for my Gallium scans. Have to keep some distance from the kids for a couple of days. Will have my first Gallium scan on Wednesday after chemo. I developed a cough over the weekend, so I went to the oncologist's office after the hospital. Oncologist gave me a flu shot (I guess he just got his batch in) and told me to see a pulmonologist about my cough and shortness of breath. He said we should have a chest x-ray for the pulmonologist, so I went back over to the hospital for a set of chest x-rays. Finally ate a late lunch at Denny's (not a good experience) and headed home. Spent the rest of the afternoon getting my referral and appointment for the pulmonologist and talking to the hospital about copies of films and reports to take to my appointment.

    • Tuesday - Picked up all my films and reports and headed to the Pulmonologist. Here are the high points:
      • Hodgkin's is on the run. There may or may not be some residual Hodgkin's. That can't be determined from the tests done.
      • The chest x-ray shows a small amount of fibrosis or something along those lines. This is consistent with the decreased lung volume shown on the PFT. This was not present on the July 29th chest x-rays. This could be caused by the chemo and may or may not be reversible. Doctor put me on Prednisone to see if I respond. Will discuss ongoing chemo implications with Oncologist tomorrow.
      • Discussed the small amount of small passage loss shown on the PFT. Doctor said that this may be caused by chemo. If so, it will probably improve after chemo is terminated. Gave me a Proventil Inhaler to treat the symptoms.

    • Wednesday - Another chemo day (cycle 5, treatment 1). Counts looked good. Discussed scans and pulmonologist's comments with oncologist:
      • CTs show good progress on HD. Mediastinum mass is greatly reduced. Nodes under each arm are now normal size. Spleen looks normal size (still). Hopefully the Gallium Scans will show all these areas cold.
      • Oncologist does not believe that lung fibrosis is being caused by the chemo. As a result we went ahead with the full chemo including bleomycin. Will probably do another PFT and lung x-ray at the end of the fifth cycle.
      I have been asking for pictures of my biopsy slides almost every visit. Today a miracle occurred and I finally got them. Will post them on the site in due time. Still had some nausea during chemo even after the addition of the new anti-nausea drug in my IV. Got yet another one IV as a result. It seemed to help. Had my first Gallium scan latter in the day. It was supposed to start at 3pm, but didn't actually happen until 7pm. My cough is somewhat improved, I think the new drugs are having an effect.

    • Friday - Neupogen shot day. Am feeling much much better than I usually do two days after chemo. I don't know if it's all the extra anti-nausea stuff I got IV on Wednesday or the fact that I can breath again. I like it though. I didn't have to take much anti-nausea medicine at home this time either.


  • September 29 - October 5, 1997

    • Monday - Neupogen shot in the morning, delayed Gallium scan in the afternoon. Delayed scan was kind of interesting because I was the first scan on the brand new machine at the hospital (dual head, all automatic with motorized table, big color displays, windows software, remote control, ...)

    • Tuesday - Tuesdays are now pulmonologist days. His exam confirmed better breathing. We are continuing with same treatments for one more week. Will get another chest x-ray and see him in one more week. This should give me the best information concerning lungs and chemo prior to next visit with oncologist.

    • Wednesday - Neupogen and counts. All is well.

    • Friday - Fourth Neupogen shot day. Done until next chemo.


  • October 6 - 12, 1997

    • Tuesday - It's Tuesday, so it must be pulmonologist day. Had a chest x-ray first. X-ray showed improvement which confirmed how I have been feeling. Best guess is that the chemo was causing problems, but that the Prednisone is making it better. Doctor reduced the Prednisone from 40mg per day to 30mg per day. Will continue full chemo and Prednisone for now. This is all great news as it indicates that I will be able to continue the full chemo and that there is no permanent damage! Next pulmonologist visit is in two weeks.

    • Wednesday - Another chemo day (cycle 5, treatment 2). Counts looked good. All the scans are in, oncologist saw things as follows:
      • Lymph nodes under both arms look normal size, there is no sign of active disease.
      • Chest mass is greatly reduced in size. Can't determine yet if it has reached minimum size because this type of HD produces considerable amounts of scar tissue which still shows on CT. There is still some Gallium uptake which may indicate some remaining active disease.
      • Spleen was always normal size, but it looks improved on Gallium scan. It looks like I really was IIIAS.
      • Will have another set of scans at the end of cycle 6. If there is no change, then we are done. Otherwise it's two more cycles for a total of 8. Doctor puts the chances of 6 vs 8 at 50-50.
      • Had diffuse pickup of Gallium in the lungs. Both oncologist and pulmonologist think this is caused by chemo. Neither one is concerned with this development.
      • Also learned that doctor normally does not remove the port for years after treatment, just in case.

    • Friday - Neupogen shot day. Feel pretty good. Being able to breath is helping.


  • October 13 - 19, 1997

    • Monday - Neupogen shot day.

    • Wednesday - Neupogen shot and counts day. Whites are quite high again, but doctor likes four shots.

    • Friday - Neupogen shot day. Last one.


  • October 20 - 26, 1997

    • Tuesday - Saw pulmonologist today. New X-ray showed lungs almost completely cleared up. Still have some sclerosis in very bottom of both lungs. Pulmonologist thinks this will clear too, but says it shouldn't present any problems even if it doesn't. Cut my Prednisone to 20mg per day. See him again in two weeks.

    • Wednesday - Another chemo day (cycle 6, treatment 1). Hopefully this is my penultimate treatment. Doctor is very satisfied with the progress against the HD. I am having more side effects from the chemo than normal though. Counts looked good. In fact, WBC was so high that the doctor volunteered that three Neupogen injections would probably be enough this time. Discussed several miscellaneous items with the oncologist:
      • Have been having cramps at night. Mostly in my legs, but also in the feet and hands. Probably due to the vinblastine. No treatment available.
      • Have been having some additional sweating on my shoulders and up (mostly at night). Probably due to hormonal changes caused by the chemo. Doctor not concerned with no other evidence of continuing HD.
      • Discussed leg bruising. This earlier bruising has been getting darker lately. Also looks like I am developing a similar bruise on the other leg. Doctor remained unconcerned. Nothing to do.

    • Friday - Neupogen shot day. I haven't been using my inhaler since Wednesday. I seem to be able to breath fine. Will call pulmonologist on Monday and see if it's all right to continue without it.


  • October 27 - November 2, 1997

    • Monday - Neupogen shot day. Tried to reach pulmonologist, he is out all this week.

    • Wednesday - Got counts and a miracle today. Doctor said I didn't need any more Neupogen shots! A two shot treatment!! I think he is planning on the next treatment being the last!!! I hope he is right!!!!


  • November 3-9, 1997

    • Tuesday - Had appointment with pulmonologist. He was happy with progress and didn't mind that I was not taking my Proventil. I discussed the fact that I have been having a little shortness of breath. He said that is normal when cutting back on Prednisone. Said I should use the Proventil as needed. He cut my Prednisone back to 10mg per day.

    • Wednesday - Another chemo day (cycle 6, treatment 2). Hopefully this is my last treatment. Although he has not said so, the doctor is acting like this will probably be my last. Won't know for sure until I get the scans done. Discussed a few miscellaneous items with him:
      • I felt more run down than usual today (before chemo). Also I have been having headaches the last two weeks or so. I suspect these symptoms are associated with the Prednisone dosage reductions. Doctor agreed.
      • I got a new boil about a week ago. It hasn't been doing much since, but the doctor thought I should take an antibiotic anyway. So I get to take Augmentin for a week.
      • Discussed Neupogen. Doctor thinks I will probably only have two shots after this treatment. Will decide based on new Wednesday's counts.

    • Friday - Neupogen shot day. Feeling short of energy, but not bad.

    • Saturday - Got injection for Monday's gallium scan. Energy a little better today, but stomach has been upset.

    • Sunday - Drank my Readi-Cat for Monday's CT scans. It hasn't gotten any tastier.


  • November 10-16, 1997

    • Monday - Busy day on the HD front. Since my CT scans are in the afternoon, I was able to eat a light breakfast. Then no food or drink allowed until late afternoon. Had my gallium scan first. Only took a little over an hour on the new machine. Then went to the oncologist's office for my Neupogen shot. Back to the hospital in the afternoon for chest x-rays and CT scans (chest, abdomen, and pelvis). Didn't think much of the vein puncture the CT guy did for the "contrast" fluid. It was fairly painful and it left a bruise that I will probably have for a good while. By the way I still have my upset stomach.

    • Wednesday - Went in for my counts. They were good enough that I didn't need a third Neupogen shot. Another twofer! Also had a short discussion with the oncologist. Said he had skimmed the written reports of the scans and they looked good so far. So I am hopeful that I don't have two more cycles of chemo left. Still have the delayed gallium scan on monday though. Stomach is feeling a little better. Also my taste is returning to normal (taste has really been off after each of my recent chemos). It's really a bummer when you are hungry all the time (Prednisone) and nothing tastes good!


  • November 17-23, 1997

    • Monday - Another scan day. First I had my delayed gallium scan. This took extra long because the technician hung the computer controlling the machine and lost one of the scans. So, after rebooting and searching in vain for my scan, we had a redo. Then I had a MUGA scan. The oncologist added this scan on Friday. This is another indication that he thinks I am done with chemo! I will know for sure in two days.

    • Tuesday - Visit with pulmonologist. Things continue to improve (at a slow rate). Decreased Prednisone to 5 mg per day (I have to split the 10 mg tablets). Will stop taking Prednisone in two weeks. See pulmonologist again in four weeks.

    • Wednesday - Saw oncologist today. He did NOT tell me what I wanted to hear:
      • He is still satisfied with the progress fighting the HD, but
      • there was tumor size reduction in the last two cycles (mediastinum mass is smaller). Although this could just be scar tissue shrinkage, it could also be shrinkage of active HD. So
      • I need to get two more cycles of chemo. However, the MUGA scan showed some reduction in heart "ejection fraction". In other words, there appears to be some damage to the heart muscle. Therefor, he doesn't want to continue with Adriamycin or Bleomycin since both these drugs can cause heart damage. So
      • he is switching to MOP (MOPP minus P). This chemo is given in 28 day cycles and consists of the following chemicals:
        • Mechlorethamine - this is a alkylating agent and is related to the mustard gas used in World War II. This is given IV on days one and eight.
        • Oncovin (Vincristine) - This is an antineoplastic agent and is related to the Vinblastine in ABVD. This is given IV on days one and eight.
        • Procarbazine - Another alkylating agent. This is taken orally on days one through fourteen.
        • The last P is Prednisone. However, since I have taken quite of bit of Prednisone to treat my lung problem, he is leaving it out of my chemo.

      So, even though I wasn't mentally prepared for chemo today, I went ahead and had my first treatment. Three to go! Onward and upward!!


  • November 24-30, 1997

    • Wednesday - Counts and chemo day. Actually every day has been a chemo day since I am taking the Procarbazine. Seems like I have felt yucky most every day. I always have a bad taste in my mouth. The Procarbazine has diet restrictions. The list of things I can't have include cheese, sausage, coke, coffee, and chocolate.


  • December 1-7, 1997

    • Wednesday - Counts and oncologist day. Doctor was happy with my counts. Will have counts in a week, but barring a surprise he doesn't think I will need Neupogen. Am now off Prednisone.

    • Thursday - Now off Procarbazine. Good!, I REALLY don't like that stuff.


  • December 8-14, 1997

    • Wednesday - Count day. Didn't wait around to see if the doctor wanted to do anything as a result of the counts. Whites are a little lower, but that was expected. Platelets are lowest ever, but still in normal range.


  • December 15-21, 1997

    • Tuesday - Went to the pulmonologist. He was happy and doesn't want to see me for three more months. My breathing has been improving without medication.

    • Wednesday - Saw the oncologist today. Not much new news. Blood counts were good, had chemo. Not looking forward to another 14 days of procarbazine.


  • December 22-28, 1997

    • Wednesday - Counts and chemo. Counts looked pretty good, hopefully I can finish up without any more Neupogen or similar drugs. 7 more days of procarbazine. Am really hoping that I will be done with chemo after this.


  • December 29-January 4, 1998

    • Wednesday - Counts and oncologist. Counts were good enough. Should not have to have Neupogen, etc. Took last procarbazine pill today! See oncologist in two weeks with results of the x-rays, CTs, and Gallium scans I will be having over same. Am really hoping that I will be done with chemo after this.

    • Saturday - Started the scan routine. Got my Gallium shot and picked up my Readi-cat. Radiologist has decided that one bottle of Readi-cat is not enough anymore. Now have to drink two 15 oz bottles. Great!


  • January 5-11, 1998

    • Monday - Had my Gallium scan today. They are getting easier. I am spending more time sleeping "on the table".

    • Wednesday - Had my chest x-ray and CT scans today. Two 15-oz bottles of Readi-cat and two glasses of yukki lemon-aid are too much! At least I didn't get a big bruise from my contrast shot this time. I had him use my right arm instead. For the first time I noticed my body warm up when the contrast was injected. I understand that it's normal to get different reactions when the contrast is injected into a different arm. Has to do with different paths to the heart. My taste buds are returning to normal.


  • January 12-18, 1998

    • Monday - Had delayed Gallium scan. Not much interesting to report.

    • Wednesday - Saw oncologist. Scans showed no evidence of active disease. Also the scans were essentially the same as the ones from two months ago. Hopefully all that remains is some scar tissue. I AM OFFICIALLY IN REMISSION! Dr. described it as a "complete response". He normally leaves ports in for three years. Most remissions occur within three years. Had my port flushed. Will have to have it flushed every month. Will see oncologist every month for now anyway. Things are returning to normal. Food is starting to taste OK again and both kids each bought me a big bag of chocolate cookies since I can eat chocolate again. Have some rashes (normal before Hodgkin's). Also have some skin flaking on face and head.

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