Update February 1999:  My chest x-ray and blood tests were all normal.

Update August 11, 1999:  My recent follow-up visit with the oncologist showed normal blood counts and blood chemistry, normal physical exam, with the following text from the radiology reports:

CHEST X-RAY PA AND LATERAL
FINDINGS:  Compared to 02/12/1999 there has been no significant change and no evidence for active cardiopulmonary disease and certainly no definitive evidence for lung cancer.

THORACIC SPINE
FINDINGS:  Examination of the thoracic spine demonstrates degenerative changes, but no acute bony abnormalities. (The doctor said that "degenerative changes" refers to normal wear and tear that is seen in all people over about 55 years old.)

Update February 1, 2000:  This update starts with a ski trip to Mammoth in December, 1999. Skiing was great. Clear sky, no wind, good snow, and small crowds. I came in middle of the pack on my Saturday morning race after time for only a few warmup runs. Then it happened...

As I was cruising in for lunch after an exhausting Sunday morning, my left ski caught an edge and was dragged perpendicular to my direction of travel. To avoid a high speed crash I was able to lunge and put all my weight on my right ski. I was successful and continued on skiing to lunch and skied several runs after lunch before we returned to LA. I must have wrenched something in my upper back, because the ride back was uncomfortable and by that night I felt like a 100 year old man as I moved about trying to avoid the back pain.

What concerned me is that in the previous week I had several small warning twinges of pain in the same location of my upper back as I turned my head to check traffic before making a lane change. So the skiing incident probably aggravated a preexisting condition. I feared that there might be new metastases on my spine. Within a few days I noticed a slight loss of strength in my right hand. Surprisingly, cervical spine and thoracic spine x-rays were normal, my first thought was the pain was from the ski injury, and the right hand weakness was probably due to a pinched or strained nerve.

A week later an MRI of the cervical spine (where the hand nerves originate) was normal, but the thoracic spine MRI showed the originally treated damage at the tenth thoracic vertabra (T-10) and also tumor activity at T-1. My oncologist thought this was new activity, and I had to remind him the 4/22/98 bone scan indicated a high level of activity in the upper thoracic spine (T-1).

For several months in summer 1998, I had questioned the status of T-1, but nothing was done. I can only surmise that my oncologist overlooked it on the bone scan report and did not think I knew what I was talking about, or else they decided not to treat it because it was not causing any symptoms and I was a terminal stage IV anyway. I knew it was there after seeing my neck light up like the 4th of July on the monitor during the bone scan. Finally in September 1998, I convinced them to check it out, but cervical and thoracic spine x-rays showed nothing unusual, so I was forced to conclude that whatever was there in May, 1998 had disappeared along with my other tumors.

Since similar x-rays in December 1999 were also normal, even though a serious problem existed, this is a lesson that x-rays alone should not be relied upon for diagnosis of bone metastases.
I urge patients to insist on an MRI or a CT scan when instinct warns something is not right.

In January 2000, I went for a neurology consult to try to determine the cause of my right hand weakness. The neurologist ordered an MRI of the brachial plexus (nerve bundle near right armpit) and also a brain MRI. The brachial plexus was normal, but the brain MRI showed two small tumors, 15 mm in the left parietal and 13 mm in the right posterior frontal lobe.

He did not think these were causing my hand weakness or any symptoms, so perhaps my ski injury was a fortunate incident, allowing an early diagnosis of the brain tumors. My radiologist says it will be a slam dunk to get rid of them using stereotactic radiosurgery (SRS). They put on a headframe to determine exact location of the tumor, and then radiate it with a small beam from many directions, avoiding brain stem, optic nerve, and eloquent areas of the brain. Each tumor gets a full dose of radiation, but surrounding tissue only gets non-lethal doses. It is a one day treatment and I am scheduled for Wednesday Feb 2, 2000. Meanwhile, I am getting 14 daily radiation treatments to T-1.

I'm pretty sure that what happened is that the T-1 was either not affected by the chemo/alts back in 1998, or it was not completely eradicated and has been gobbling up my vertabra ever since. It did not show up in 9/11/98 cervical spine and thoracic spine x-rays nor in the same series of x-rays on 12/21/99, only on the MRI done on 12/28/99. I think that during the ski incident, the eroded T-1 partially collapsed into the T-2 and somehow triggered the hand weakness, or perhaps the hand weakness is entirely due to strained nerves from the ski incident.

Since the alts alone did not prevent the tumor growth in T-1, this whole scenario lends more credence to the possibility that the alts enhanced the chemo back in 1998, or the bone cancer is more resistant to chemo/alts than the lung cancer in my particular case. I have always realized how nasty lung cancer is, so this turn of events does not take me completely by surprise.

I have currently increased my essiac to 4 ounces of double strength, twice a day. Each morning and evening meal I am now taking a packet of the Forward Plus vitamins, 200 mg of CoQ-10, 1000 mg of cats claw bark, 500 mg of grapeseed extract/MSM, an additional 2000 mg of MSM, 25 mg of beta 1,3 glucan, and 2 capsules of Immune Support (from Nutrition for Life). I am considering looking into IP-6 and MGN-3, but have not yet started to use them. The Immune Support contains shark cartilage and a peptide isolated from shark cartilage.

It is interesting to note that when I asked the radiologist if it was alright to continue with Whitaker's vitamins during my treatment, he replied that the 20 to 30 times RDA levels would be fine but he didn't want me on megadoses such as 50 grams of vitamin C. I have recently come upon a great review article about using antioxidants during chemo and radiation. It has discussions on many individual supplements and has journal references. It can be read on the cancercure list at http://www.egroups.com/group/cancercure/5493.html?

Update February 7, 2000:  Treatment to ablate my 2 brain tumors was done Wed, 2/2/00. I arrived at ____________ Medical Center at 6:30 AM to get an IV started. Then at 7:00, the neurosurgeon attached the frame to my head with 4 pins. Very painful for a minute or two during insertion of the pins, but no pain during the day until 6:00 PM when the pins were removed. My 8:00 AM CT scan to calibrate the tumor location didn't get done until 9:00. The whole procedure was expected be finished by 2:30, but they didn't pick me up from the waiting room until 3:45. When I was bolted to treatment table, they realized they had the wrong beam collimator on the machine, so I had to be unbolted and wait another 45 minutes while they switched and calibrated the correct machine attachment!

The treatment machine is behind me in the photo, I am not bolted down on it yet. It only rotates in one plane, but the the table I was on is adjusted with laser beams so that the beams will always focus on the center of the tumor. Once this adjustment has been made, the table can be rotated to any angle and the tumor will always be in the beam. They treated each of my tumors with 4 different arcs of radiation, rotating the table to different angles for each treatmet. The treatment was finished about 6:00 PM. Some Advil helped relieve the mild pain and it had been a long day so I stopped for a steak dinner on the way home!

As I write this on Thursday morning, I feel fine. I'm sure that I'm short a few billion brain cells that were there yesterday, but it is a good feeling to hopefully be rid of the two tumors before they got to an untreatable size. The radiologist assures me that there will be no long term deficits in brain function. (My host essiac-info.org wrote, "Aha, so you have no excuses to get out of learning html!")

Update February 25, 2000: I apologize for not answering any emails in the last week, but I had a catastrophic weekend! A bone scan on 2/17/00 showed the presence of some new small spine mets plus significant activity in the T-9 area just above the T-10 area that was radiated in 1998. Radiation to the T-9 was to have begun on Monday 2/20/00, but on Friday night 2/17/00 I began losing sensation in both legs and by Saturday morning could not walk. I called 911 right away and said, "Help, I've fallen and can't get up!" -- I never thought I'd be someone who had to say those words.

MRIs done immediately at ____________ showed a tumor in T-9 compressing my spinal cord, so Saturday night they cut out the T-9 vertebra and replaced it with a portion of my rib, plus some nuts, bolts, and screws. Since I still have sensation and some motor control of my toes and legs, the doctors think I have a good prognosis, but I will be spending a couple of months in a back brace.

March 17, 2000 Report:  Bob will be coming home from the hospital next week and hopes be online again by March 25 to answer emails.

Update April 9, 2000:  I was scheduled to leave the hospital on March 21, but that was delayed several days when they found a blood clot in my right calf. When I did get home and found over 200 emails waiting, I apologize but I was so overwhelmed I turned off the computer for a week!

There was too much other stuff going on, and even now I still have to find last year's tax forms and file the new forms. I still must wear a brace before I sit up in bed. It runs from my armpits to my thighs and makes it painful to use the computer, so I spend little time online.

I am still getting physical therapy and have had 5 weekly chemo treatments which I fear may be slowing down the therapy or damaging the new nerve growth. I had one treatment of Navelbine only, two of Navelbine plus Gemzar, and two of Navelbine plus Camptosar. The Gemzar was stopped because my oncologist just learned that it might cause radiation recall, which would cause increased spinal cord damage.

I can walk with a walker and get in and out of a car, I even drove my own car, but most of my time is spent in a wheelchair or in bed. They will probably do a CT scan of my spine to see if the healing has progressed enough to toss the brace, and a chest CT to follow the progress of a newly discovered tumor in my upper left lung. The CT's should happen in 2 or 3 weeks. I sure regret not being forceful enough in requesting a spine CT or MRI in 1998. I feel that most of my current problems could have been avoided by appropriate diagnosis in 1998 or mid 1999...

I am currently taking my original regimen of essiac, CoQ-10, grapeseed/MSM, cats claw, and Whitaker's vitamins. I am also taking 3 grams a day of MGN-3 which seems to be effective in boosting killer T-cell activity. I stop the vitmins, CoQ-10, and grapeseed on chemo day.

Thank you all for your cards and emails. I apologize for not being able to respond at this time.

Update May 2, 2000:  I had CT's and a spine MRI on Thursday, April 28. The CT reports were sent to me on Saturday and say that the left lung pleural effusion is less than it was in February after the surgery -- there is no mention of an upper left lobe lung tumor! Maybe it has dissappeared or was not a tumor to begin with? There are no enlarged lymph nodes, but they do see a 1x1.5 mass in my right lobe where the original primary was in 1998. Maybe it is scar tissue? The spine CT shows several bony metastases along the spine in addition to a bag full of titanium screws and rods!

I haven't talked to any doctors yet and can't see the orthopedic surgeon until May 10, so I guess I am stuck with the brace for at least another a week and a half. It's been a struggle to type just this much because of the brace...

Update May 18, 2000:  I saw the orthopedic surgeon on May 10th. He took x-rays and said everything looked fine, then told me to keep the brace on and come back in another month! I asked if the surgical area was not healed, and he said it was fine but he was concerned about "possible damage" since there are mets on my spine. I told him these will probably kill me in a year or so if they are not reversed, but they are small now and not yet invasive. When I explained that the fleece lined torso brace also was a portable steam bath during hot weather, he gave permission to remove the brace, but asked me to wait until I got home, which sounded to me like CYA (Cover Your A--) !

With the brace off I feel like I have a tight belt around my belly and lead weights on the back of the belt, so I got some improvement in comfort level, but sitting is still not as comfortable as I had hoped for, so I am still doing minimal time on computer. Hopefully my back muscles will get stronger.

I got the following email this morning. Kind of makes life worthwhile for me right now...

> Just wanted to say thank you and best "well" wishes... an amazing site
> and sooooooooo verrrrrrry helpful! Yes, I too have been diagnosed with
> lung cancer but will spend much time now on your web site for HELP
> AND HOPE! THANK YOU for taking the hours of work to give hope!

Update May 24, 2000:  Because I have had increasing pain in my left leg, my physical therapist suggested that I see my doctor to make sure that I don't have a new blood clot. I saw my oncologist yesterday and asked him if the radiologist had taken a second look at my 2/25/00 and 4/27/00 chest CT scans (he had overlooked the left lung tumor on both initial reports.) On rereading the scans, he saw the pancoast type tumor on top of the left lung on 2/25/00. This tumor was pressing on the brachial plexus nerve bundle and was the cause of some weakness in my left shoulder. On rereading the 4/27/00 CT scan, he noted that the pancoast tumor had almost completely disappeared !

That accounts for regaining full strength and mobility in my left shoulder within a few weeks of leaving the hospital. My oncologist is sure that these results are due to his chemotherapy, but I suspect that they may be due to my latest regimen including 3g/day of MGN-3 plus 6 ounces a day of double or triple strength essiac tea. I am refusing chemo for a two month period to see if the alternatives alone can decrease the tumors. If I see tumor growth on top of the left lung, I will restart chemo (Navelbine/Camptosar). The two month CT's will be in the end of June, and I see the oncologist on 6/27/00 to go over scan results. Meanwhile my back is very uncomfortable, even with the brace off.

Update June 6, 2000:  The MGN-3 is expensive at Lane Labs, but I was pointed to a slightly less expensive source. Elena, who works for Dr. Ghoneum at 1-818-509-0274, has 0.5g (500mg) tablets, 60 per bottle for $85.00. At 3g (3000mg) per day this is only a ten day supply for about $255.00 per month. Maintenance doses of 1g (1000mg) per day would then be $85.00 per month.

It is my understanding that this is the same source as used by Dr. Ghoneum in his research studies. It was suggested to me to use 3g per day to jump-start killer T-cell activity against active disease for two months, then drop to about 1g per day to maintain T-cell activity. The MGN-3 Article by Mamdooh Ghoneum is now posted in my Articles Directory.

I'm not certain how effective the MGN-3 is, but something caused a rapid reversal of my recent pancoast tumor. Maybe I will know more after my CT scans in late June?

Update June 26, 2000:  On Monday 6/19 as I was getting into my car to go to Physical Therapy, I felt an intense pain in my upper left thigh. I carefully lifted my left leg into the car and 10 minutes later the pain was gone, but the therapists decided to cancel my appointment since my leg was still weak. I got back in and out of the car carefully with no problem but had intense pain again when I tried to slide my left leg into bed that night, and again in the morning.

I called my oncologist and he wanted to have me admitted in case I had a fractured hip. My scheduled spine MRI and chest/abdomen CTs will probably be done while I am in the hospital. My upper left arm is much stronger, so that may have been due to a muscle pull and not a regrowth of the pancoast tumor? The scans should clarify things! Meanwhile, the increasing "tightness" around the waist is very uncomfortable. I just wanted to keep you up to date in case I am offline for a while.

Later:  Bob is out of surgery and back in a room. On a constant morphine drip, he can give himself a booster if needed. Bob said he woke up from surgery FIRING all his doctors and nurses! Finally one of the doctors got him calmed down so Bob hired them back again. Anesthesia can do strange things to you and typical of Bob's sense of humor, he wanted you to hear this funny little incident.

June 28, 2000 Report by Los Angeles friend of Bob:  Bob got his drain out today from his leg, but there is still quite a bit of drainage. He is getting 2 units of blood today because his hemoglobin is down below where the doctor likes it. He already received one unit of blood during surgery. The doctors left part of the tumor in his femur because it would have made the surgery more extensive, a greater risk, and harder recovery for Bob.

The plan now is to do radiation on that tumor and Bob is considering the oncologist's advice about following up with chemotherapy. The pain in his leg he has had since January can now be directly tied to the femoral tumor. He said at least now he knows the pain is not coming from a spinal tumor. His doctor brought him 43 pages of reports from April 2000 at Bob's request and he plans to look them all over, making a chart to see if the numerous tumors in his lumbar spine have increased in number/size or decreased. Then he will make his decision regarding further chemotherapy.

Bob will probably stay in the hospital for a couple of weeks to receive the radiation treatments, as traveling back and forth for them would be very difficult for him with the leg decreased movement. Bob reviewed the scans on the pancoast tumor in his upper left lung and conferred with his doctors. One doctor said it may have been over-diagnosed in February while his oncologist said that the tumor was as bad as the February scans showed. The April 27 scan shows the tumor almost gone and with the latest scan, there is NO tumor in his lung!

His oncologist is adamant that Bob start another course of chemo, but Bob is opting to wait and see what his own review of reports show, receive his 2 weeks of radiation treatments to the femur and then reassess. Chemo only has a possible 40% chance of doing something for this latest tumor, while the radiation should give him 99% results. He is still suffering from pain around his waist and has dry mouth, possibly from the meds. He has been up and about some, but is tired from what he thinks might be his low blood count.

About firing the doctors and nurses, he said when they were trying to wake him up he thought they were trying to suffocate him with the oxygen mask. His anesthesiologist talked to him and Bob remembered where he was, so he hired everyone back! His spirits sounded up and he will start taking his alts again while in the hospital. Bob is on the opposite end of the hall from last time so he is happy he gets his meals earlier than before. He has plenty of snacks, doesn't have room for cards, flowers and didn't want any books. People are sending caring thoughts and prayers to him!

July 4, 2000 Report by Los Angeles friend of Bob:  Bob called this morning, his fever is almost gone and his spirits are much improved. He has physical therapy twice a day and now occupational therapy has been included. Tomorrow he is scheduled for his first radiation treatment. Most of all, he wishes everyone who reads his webpage has a Happy 4th of July! He cares about them so much.