Updated November 18, 2007
The Diagnosis
Between May and July 1994, I repeatedly went to see my doctor about pain in my lower back on one side. I was given pain killers and told to rest more. The pain gradually developed into severe pain on both sides of my lower back and I also started to experience shortness of breath. I assumed this was due to my being "out of shape" from all the rest I was having. My appetite got worse and so did the pain and the shortness of breath. I also noticed that there were traces of blood in anything I coughed up. My chest used to hurt whenever I breathed in deeply. My breathing was so bad that I got breathless just walking across a room and I would have to lie down to catch my breath after climbing a flight of 13 steps.
An X-ray of my back did not reveal anything abnormal. A chest X-ray, however, showed a lot of shadows on my lungs indicating that there was something there that shouldn't be. I was sent to see a chest consultant who looked at my X-rays and admitted me to a hospital for a bronchoscopy. The bronchoscopy revealed that there were tumours in my lungs and a pregnancy test on my urine confirmed it to be choriocarcinoma. It is worth noting that there was no pain or anything out of the ordinary regarding my testicles. I was plugged into an oxygen mask straight after. I was told it was quite amenable to treatment (note - this is not the same thing as "it can be cured" or "You are going to live").
The First Chemotherapy Course
The next day I was shipped off, by ambulance, to an Oncology unit in another city and plugged into a drip. I was told by the doctors there that this type of disease is very curable and by that they mean get rid of it so that it never returns. At this point I needed to hear that. My beta-hCG level was a staggering 1,427,100! I was given 2-3 days of Etoposide (VP-16) and Cisplatin. It didn't make me feel sick but it did make my breathing worse for a while. I was confined to one room and told that I was only allowed to walk as far as the tube on my oxygen mask allowed. The effect of the chemotherapy was incredible.
I started to improve within a couple of days and a week after the chemo finished I felt completely normal. I didn't have any pain in my back and I could breath normally. My consultant told me that I would probably have died within a few days if I hadn't been treated when I was. I was freed from my room at this point. The next stage was to locate all the tumours. An ultrasound scan of my testicles revealed no tumours. A CT scan from head to toe was done. This showed up lumps in my abdomen. A week or so later I continued with chemotherapy every two weeks. My regimen was:
for one session and the following session (two weeks later):
and then they would repeat the whole cycle.
After the first cycle my leg had swollen due to a blood clot in my leg. Apparently the lack of exercise in one room hadn't done me a lot of good. A week's bed rest and 3 month's of warfarin came my way. As the treatment progressed I started to experience hearing difficulties, particularly at the high frequency end. I also needed the occasional blood transfusion during this course of treatment.
The RPLND with Lung Surgery
After about 7 or so sessions of chemotherapy and a baseline CT scan, my consultant appeared with a urology surgeon and suggested that they could speed up my overall recovery period if they operated. I wasn't told much more than that before the surgeon disappeared. I understood this surgery to be just an abdominal operation. Later, my consultant told me, in passing, that the surgeon will probably cut a little higher on my side so that he can cut the tumours out of one of my lungs as well! I didn't see my surgeon after that until the day of the operation. I later discovered that my consultant had wanted it that way because he didn't want to frighten me into not having the surgery which he felt I needed.
A nurse briefed me on the procedures to follow. She told me that I would have a large scar starting from the side of my body that follows the bottom of my rib cage around to the front of my body to the lowest point of my rib cage and then downwards. I was told that the I would not need to go into Intensive Care. An anaesthetist came to see me that evening and suggested that an epidural with local anaesthetic would be best for me as opposed to the traditional morphine based pain control methods. I took the anaesthetist's advice and agreed to this.
The following morning the surgeon came to see me and it seemed as if he had only just decided which side he was going to operate on that very morning. I was first in line for surgery that morning and I was supposed to wake up later that afternoon. I went under and woke up in an Intensive Care Unit in a completely different hospital. Apparently they had problems immediately after the surgery. Due to the angle of my body during the operation the blood supply to my head caused all the veins inside it to swell. They even thought that my windpipe might close. Apparently, I had also lost a lot of blood. I had several tubes coming out of me.
A day or so later I was transferred back to the hospital I initially went to sleep in. Other patients on the ward thought I had died during the surgery when a nurse came to pack my things. It was then that I learned that there were political reasons why nurses on the ward weren't allowed to change epidurals. Owing to this, they had to call an anaesthetist every time my bag of local anaesthetic ran out. The anaesthetist's response time varied from 10 minutes to 6 hours! I was in such pain on one occasion that I couldn't even twitch. I knew that I had chosen the wrong type of pain control.
As time passed I improved and managed to land myself with another deep vein thrombosis in my leg. I didn't have staples to secure the wound. I had a subcutaneous suture that was about half the length of my wound. It had a bead on either end where it protrudes from my body. I had 2 sutures of this kind for the whole wound. When they removed the sutures they just cut the ends of the beads and asked me to breath in and out and they had removed a suture in that time. I didn't feel a thing. They did it again for the other suture too. The scar is barely noticeable.
My consultant told me that they managed to remove all the tumours from my abdomen and all but one small one in my right lung. He said that all the tumours in my right lung were necrotic indicating a good response to chemotherapy. He therefore believes that the remaining masses in my left lung are also probably necrotic so for all intents and purposes I was "cured". I was discharged from hospital about 2 weeks later. My hCG was 12 then. It returned to less than 2 (undetectable) within about 10 days or so.
The Stem Cell Harvest
I had to have my hCG levels monitored every 2 weeks and come into hospital for a check-up every month. Everything was normal during the first check-up. The next one was just over a month later and my consultant told me that my hCG level was going up. At that time, my hCG level was 138, and 48 a week before and 7 a couple of weeks before that. The usual ultrasound scans, CT scans and X-rays were called for and showed nothing new. They assumed the growth was still too small to show up anywhere or the remaining tumours in my left lung were not as dead as they thought. My consultant explained that the next procedure he had in mind was a kind of Bone Marrow Transplant involving high dose chemotherapy followed by a stem cell rescue procedure but he wanted to bring my hCG level down before he did that. More chemotherapy was therefore called for.
In a nutshell the whole thing involves collecting some stem cells (progenitor cells) from me and then attacking the disease with really high dose chemotherapy. A side effect of this chemotherapy is that it will kill the bone marrow. To recover from this they re-infuse my stem cells and my bone marrow regenerates. As it takes time for my bone marrow to recover, I will have no immune system and will have to remain in isolation for a few weeks. I had a Vascular Catheter inserted into my shoulder and then given some high dose Etoposide (VP-16) to mobilise my stem cells. I had a course of 10 injections (1 each day) of a growth factor (Neupogen a.k.a. Filgrastim or G-CSF) that should stimulate production of stem cells. The stem cells are then filtered from my blood in a painless procedure that lasted a couple of hours or so. The Vascular Catheter was needed for this. The very next day I started on the promised chemotherapy.
The Second Chemotherapy Course
This time the regime consisted of:
This was supposed to last about 5 days but the schedule had about 26 hours worth of "drip time" every day so it ran over into another day. They couldn't re-use a previous cocktail of drugs because the disease changes its make-up and becomes more resistant to it. The Vascular Catheter was removed and I was sent home. I returned for another round of this chemotherapy about 3 weeks later. After this, I had to go for further scans and investigations to ensure I was ready for the high dose therapy that was to follow. These investigations included an echocardiogram, ECG, dental assessment, CT scan, kidney clearance and lung function tests.
The High Dose Chemotherapy and Stem Cell Transplant
I would need a another central catheter inserted through my chest which was done a week or so before I was admitted to my isolation suite and plugged into my high dose chemotherapy. This time the regimen was:
This was very unpleasant stuff but I managed to live through it. A day or so after the chemotherapy they re-infused my stem cells. Apparently they had managed to collect a lot of stem cells so they didn't need to use all of them. The isolation began from this point onwards. My dietary requirements changed too in order to reduce the possibility of infection. My blood counts dropped as expected and I caught an infection, as everybody does. They had trouble getting rid of the infection so in the end they decided to give me some more Neupogen injections to try and encourage my bone marrow to recover quicker and therefore bring my immune system back earlier than expected. My bone marrow did recover quickly and I was out of isolation after a total of 10 days. A couple of days later I was allowed to go home.
The Second Relapse
Once again they thought they had beaten it. I was skeptical. A few weeks later my hCG level started to go up again but very slowly. Further scans did not show any new growth. A CT scan of my lungs actually showed improvement. My consultant pointed out two courses of action. The first and most preferable was to try harder to locate the growth and cut it out. The second was further chemotherapy using Taxol.
Locating the growth would be done by doing an anti-body scan. This involves injecting me with a radioactive anti-body that clings to hCG. This would find the growth that is producing the hCG. I would then be scanned from head to toe and from several angles using a Gamma camera. The radioactivity detected would be where the suspected growth is. Before this scan can be done my hCG level has to be at least 50 or so. Several weeks went by as my hCG level climbed slowly and the scan was performed. It showed a "hot spot" in my left lung and a possibility in my lower back.
Why they didn't do this scan in the first place puzzles me somewhat. Apparently, an anti-body scan isn't so effective where there is a rich blood pool such as the para-aortic, in this case. Owing to this uncertainty surgery was ruled out and the chemotherapy option was approved.
The Third Chemotherapy Course - Taxol Therapy
My consultant said that he had cured a similar case to mine with Taxol therapy. This involved a rather expensive drug Paclitaxel (commonly referred to as Taxol). The regimen this time was:
The Cisplatin and Etoposide were rotated with each cycle. This cycle was repeated every 2 weeks. I was supposed to lose every strand of hair with Taxol but in my case the hair loss was hardly noticeable. At first the Oncology department weren't sure whether or not the treatment was working as my hCG level shot up after the first cycle from 205 to 854 but came down again to 185 shortly after. That's how it was for each session of chemotherapy. My hCG level went up immediately after and came down again. Overall, the trend was improving but my consultant thought otherwise.
I did argue that this response in my hCG was to be expected after each cycle of chemotherapy (tumour lysis) but they didn't seem to believe me at the time. After 6 cycles they decided that the treatment wasn't sufficiently effective to continue despite the fact that the course had brought my hCG level down from 205 to 37. My consultant's next proposal was to do another CT scan and see if he can locate the growth with a view to cutting it out. He said that he wasn't hopeful of finding anything this time.
The Fourth Chemotherapy Course
The CT scan showed lots of tumours in both of my lungs and also a dilated left kidney. This could be due to a tumour pressing down against the ureter. An ultrasound scan could not reveal any sign of disease in that area and my consultant thought that surgical removal of my lung mets was too much to ask of a surgeon.
My hCG level continued to drop down to 7 of its own accord. A Hematology consultant suggested that they might want to consider another high dose chemotherapy session with a stem cell transplant again since they already have some stem cells left over from the first time. My consultant came up with new plan of attack. This was to bring my markers down with a high dose of a drug that the disease would still be sensitive to and then to have this high dose therapy with a stem cell transplant and then maybe some surgery to remove my lung mets.
I was no longer a text book case(!) and they examined my previous results and decided that I was still fairly responsive to Etoposide (VP-16). The regime I was to have was:
The Etoposide (VP-16) was at a much higher dose. This would be repeated every 2 weeks or so. My hCG level had started to rise again just prior to this course of treatment. A year and a half had now passed since I was first diagnosed. I had decided now that the only way I could beat this disease was to devalue my body and to be aggressive with my treatment. The chemotherapy brought my hCG level down to undetectable and continued for a while after. After 6 cycles they did a CT scan. The Hematology department had decided that they weren't going to touch me (for another high dose chemotherapy session and stem cell transplant) until I had been "de-bulked". I suggested that they try harder to locate any disease in my abdomen. They did a an MRI scan of my abdomen which showed no signs of disease.
The Lung Surgery
I was referred to a Thoracic surgeon at another hospital. He said that they may not be able to operate on both lungs in one session depending on how much work was needed. They would open me up by splitting my sternum and holding my rib cage open with expanders. I started to come around after the surgery and the surgeon said that they had managed to operate on both lungs. I had 4 chest drains to play with for the next few days.
The surgeon later told me that he didn't think I needed any further chemotherapy as he managed to remove all the tumours in my lungs. The histology reported that all but one of the nodes removed were dead and one had a cluster of cells in it that were "viable". The sutures at the site of the wound would gradually be absorbed. The scar left behind is hardly visible! My hCG level was still undetectable.
I was then sent home for 2-3 weeks to recover and brought back to the hospital where I had my previous chemotherapy. I had another central line inserted in my chest and given another cycle of chemotherapy (the same regimen). I had one more cycle of chemotherapy 2 weeks later. This time they discovered an MRSA infection at the site of my surgery. Naturally they treated this and I was put forward for the usual tests they do before a stem cell transplant and then I was sent home.
The Second High Dose Chemotherapy Session and Stem Cell Transplant
I was referred to a Bone Marrow Unit in yet another hospital for this procedure. The drugs they had in mind for me this time were:
I found this procedure devastating as before. I caught a rare fungal infection that they had difficulty eradicating. The chemotherapy and antibiotics seem to have damaged my hearing further. As before they have had to give me further Neupogen injections to speed up my overall recovery. Eventually I was released, at the end of June 1996. Owing to a lack of exercise, I was unable to walk for a while but that passed. My hCG level was still undetectable at that time. A baseline CT scan of my chest and subsequent chest X-rays show no signs of disease and my hCG level is still, thankfully, undetectable.
I came from being acutely ill and close to dying to, what we believe to be, this disease free state and in remission for the longest period yet. I have experienced the resilience of this disease and although I believe in hope, I am still skeptical of my condition. I do not feel comfortable using the word "cure" anymore; "Long term remission", perhaps... but not "cure".
Dinesh. November 1996.
Epilogue: It's August 2000, and Dinesh is still alive and well with no sign of cancer. "Cure" is becoming a much more familiar word...
Another Epilogue: OK... I'm still going strong. My hCG is still undetectable. I don't think about the disease very often now so I guess not having it in the forefront of my mind does in fact mean that I am "cured" now. I still have check-ups with my consultant (yearly now) and I am welcomed by the department when I visit. Sometimes I'm asked to call other patients that are undergoing treatment. It's good to know that some good has come from my history if it helps or inspires someone else. I have to admit, I never thought growing old would feel this good.
Dinesh. November 2007