Joshua Tree

The wonders of modern medicine

I cannot believe this. An American mother is on the run because a court has ordered that her son should receive chemotherapy for Hodgkins Lymphoma, and she does not want it for him. I don't know the background to this story, or what her real motivation might be, but regardless: it is time that the medical profession wakes up to the fact that chemotherapy is a blunt instrument that treats cancer as a symptom and ignores the causes. I find it astonishing that so much has been achieved in the field of medicine, and yet cancer patients routinely receive a form of treatment that is intended to go as far as it can in destroying human cells, while stopping just short of killing the patient. This is barbaric.

Joshua's treatment by the hospital haematology department ended because chemo had destroyed the ability of his body to protect and heal itself, and any further treatment would have taken him over the edge. His official cause of death was renal failure, which means that the chemo caused kidney damage so that waste could no longer be filtered out of the blood. The implication, in effect, is that by agreeing to chemotherapy as a strategy to kill cancer cells, we were committed to a path of no return. If the chemo did not work, the body's immune system and vital organs would be so compromised as to prevent recovery from the damage caused by the chemo - and that is exactly what happened to Josh. Our efforts to help him, during and after chemo, were focused on strengthening his immune system, his mind and his spirit so that his body would have as much as possible at its disposal in fighting both the cancer and the collateral damage caused by the chemo. But this was not enough.

It would be pointless to speculate on what might have been if we had known more at the start of this journey; but based on what I know now, I think it is ridiculous to force someone to undergo this kind of treatment when - despite decades of effort in cancer research - the mainstream medical profession still does not acknowledge chemotherapy's poor success rate and does not put more effort into studying the role of complementary treatments.

As we have discovered, there are many theories out there. Some of them are clearly crackpot ideas, but there others that seem logical and look promising. Yet in all the reading we did, it was extremely difficult to find authorative research that either supported or debunked the various treatments. Most documentation comes from those promoting the various products, or from independent people who do not have the resources to undertake extensive research that is on a par with that done by mainstream medicine. So we are led to believe that chemo and radiation therapies are the only scientifically justified courses of action, and are effectively forced - as with the American mother - to accept it as the only viable treatment option, when in fact this "scientifically proven" treatment is probably on a par with the mediaeval practice of bloodletting in its rate of success.

Niggling ailments

Over the past little while the sores on Josh's legs have refused to heal completely, and the problem with his thigh has not gone away. He has a sore on his foot that was making it difficult to walk; his foot is still swollen from the infection, and now the tight hamstring has changed into a swollen mass with a texture that Josh describes as 'putty'. Since last week he has been walking with crutches, and now he can't put any weight on his left leg at all. For a while he has had a red rash in places all over his body. Some of the rash looks similar to what he had when his platelet count was low, but on his foot and a few other places it looks like something else. It may be a reaction to some of the alternative medicine (see post on 21 April), so we have stopped that and there seems to be a slight improvement, but the rash is still there.

This morning during a bath, he suddenly came out with very itchy raised hives over almost his entire body. He first had something similar before he was diagnosed with Lymphoma, which would emerge sometimes when he would go outside at night, but it was never as widespread as this. This morning it was unbearably itchy, so with this and the various other ailments we took him to a doctor today. It's a public holiday in South Africa, so we had to go to an unfamiliar GP at a walk-in clinic.

The doctor suggested antibiotics for the infections, so Josh will start those (Augmentin SR) today. She couldn't say for sure what is causing the swollen thigh, but it could also be an infection. Josh also has a temperature, and his heart is beating unusually fast, which could be a result of the fever.

By this afternoon the itchy rash had settled down, and painkillers are keeping the pain from the swollen lymph nodes in his abdomen under control (he resumed taking Doxyfene last week). The nodes are clearly swollen and pushing on his muscles, but haven't increased in size lately, so that's a good sign. These ongoing challenges are stressful for all of us, and Josh is finding it hard to deal with. None of these things is necessarily serious, but they are incredibly frustrating for Josh who wants to get better, and for us who have to see our big, strong boy having to go through this. Tonight the antibiotics already seem to be helping, and the foot sores are improving. One day at a time.

Update on 28 April:

Some good news. The red rash has dramatically reduced, his foot sores are clearing up, and Dr Brom has prescribed some medication for the thigh and heart issues.

Cancer treatment 101

This post could be subtitled "What your oncologist doesn't tell you."

We had a very useful consultation yesterday with Dr Bernard Brom, who has a medical practice near Stellenbosch and is a consultant, former editor and regular contributor to the SA Journal of Natural Medicine. Dr Brom is of the view that chemotherapy may one day be viewed by the medical profession in much the same way the profession now views the mediaeval practice of bloodletting as a medical practice. It is a "blunt instrument" in that it is not very good at targeting the cells that need to be killed, and the collateral damage is extensive, as we are now seeing with Joshua. But even if it were more precise in removing cancerous cells without damaging healthy cells, he points out that the practice is treating the symptom rather than the cause of disease.

The main causes of cancer are well known, but Dr Brom set it out very clearly for us. (If what I say here is incorrect, that is probably an error in my interpretation of what he told us.) He sees four causes:

1. Genetic - a body's predisposition, or potential for becoming diseased. Some people contract diseases or become unhealthy when exposed to the same things as others who manage to stay healthy.

2. Environmental - the things we are exposed to in our physical environment, like pesticides, smoke, radiation, and numerous things that have been identified (and even more that have not been identified) as carcinogens or causes of other diseases.

3. Emotional and mental - our outlook on life, our exposure and responses to stress. People can "will themselves" to be physically sick, either deliberately or indirectly by not taking care of their emotional and mental wellbeing.

4. Psychospiritual - our psychological makeup or condition, and our connection with the spiritual aspects of human life.

As individuals we obviously have no control over our inherited genetic makeup. We have some influence over our environment, although it is increasingly difficult in modern life to control what we are exposed to in the air and the food we eat and water we drink. But we continually make choices about many things over which we do have control. There are growing fields of study in these aspects, and how they control "genetic expression", or whether our potential for becoming diseased is actually realised. Epigenetics is about changes in genes that occur without changes to DNA (including the role of the mind in causing change), and Neutrogenomics is about the role of food.

The bottom line is that if we want to completely remove cancer, we need to address the last three of the four influencing factors. This seems to correlate with most of the anecdotal evidence of people who experience spontaneous remission; and there are certainly many cases - some famous and some people we know - of people who were given a few months to live but "fought back" and won. Dr Brom also pointed out that the evidence is not only anecdotal: there are in fact many hundreds of properly documented and published cases of spontaneous remission, where cancer "miraculously" disappeared (to the apparent amazement of doctors who failed using chemotherapy).

Given the inability of most of the medical profession to either understand or accept or communicate this more holistic way of seeing health issues, it is not surprising that people like us are more or less forced into accepting that chemotherapy and radiation are the only ways to treat cancer. Lorraine was uneasy with the mainstream approach from the beginning (I must say that I had put my faith in chemotherapy), and she has been researching and talking to people continuously about alternative approaches, but there were no doctors or other healing practitioners who were willing to stand up and say "I will help Joshua heal himself without chemotherapy."

What is shocking is that chemotherapy isn't as successful as we are led to believe. A paper on the contribution of cytotoxic chemotherapy to cancer survival rates by G. Morgan et al looks at an "analysis of the results of all the randomized, controlled clinical trials (RCTs) performed in Australia and the US that reported a statistically significant increase in 5-year survival due to the use of chemotherapy in adult malignancies." The study concluded that "overall, chemotherapy contributes just over 2 percent to improved survival in cancer patients," and that "despite the use of new and expensive single and combination drugs to improve response rates... there has been little impact from the use of newer regimens."

What I also find amazing about this is that we are only talking here about the 5-year survival rate - not what happens beyond that period. If that's the medical profession's definition of success, they certainly set the bar low. One can only wonder what the survival rate is after, say, 10 years.

Joshua has been receiving various pills and supplements and other interventions to help counter the negative effects of the chemo and to address the last three factors listed by Dr Brom, but now we are relying on alternatives entirely.

To be sure, alternative medicine does not kill cancer, but what it seems to be able to do is to make it disappear by removing the causes and helping to boost the immune system so that the body is able to fight. Chemotherapy deliberately destroys the immune system without addressing the underlying cause, and I can easily imagine that this is why many people who have cancer have a high likelihood of getting it again: they are genetically predisposed to getting it, and have done nothing to alter the factors that encourage it to emerge.

So, Dr Brom's prescription is this:

• Take Glyconutrients to provide what the body needs to help cells function properly. The theory is that glyconutrient supplements supply what we would be getting in food if we ate only organic, properly ripened fruit and other food. (Fruit that is picked early so that it travels well does not have the fully formed sugars that our bodies need.)

• Eat (or drink) carrots, beets and celery.

• Take Chinese herbs that he believes have shown promising results.

• Place a cloth, soaked in Castor oil and heated, on the abdomen to help reduce the swelling of the lymph nodes.

• Take Tumeric (as obtained from the grocery store) at least four times a day to help boost the immune system.

• Address emotional, mental and spiritual aspects. This is the intention of our planned trip to Brazil, but we are not waiting for that. Joshua has seen various people to help with these things, and this past weekend we were at a spiritual healing centre where we will be returning again shortly.

Dr Brom has an article on cancer prevention in the upcoming May edition of the SA Journal of Natural Medicine.

Converging on a strategy

Josh has overcome the sinus trouble and is feeling stronger, but is tired from lack of sleep. (He has a sore hamstring that wakes him at night - no obvious cause.) It's still school holidays, so visits with friends continue when he has the strength.

We've been getting lots of advice from a range of sources - all much appreciated - and there are many healing approaches to choose from. Some sources reinforce what we have previously heard or read, with the result that some things rise to the top of the list while others drop to the bottom. What we need now is to converge on a regimen that takes a holistic approach with measures that are mutually reinforcing, and we are talking about that to doctors and other people we know who have gone through similar experiences, or helped others. In addition to taking medication and watching his diet, Joshua is being guided through the emotional and mental aspects that are important to healing in its broadest sense.

A great big thank you to all who have left comments here. It's wonderful to know that so many people are thinking about our family.

Phase two

Friday's CT scan, we learned today, shows that Joshua's lymphoma has spread rapidly to lymph nodes in previously unaffected areas, such as his chest. The focus up to now, and the target of the planned radiation treatment, was on his abdomen. With this spread, radiation treatment is no longer viable, since hitting only the abdomen will not kill the disease, and radiation over the full area where the lymphoma is visible would itself be lethal for Josh. Chemotherapy also is not an option, since the previous doses were very strong, and any further doses would severely damage the bone marrow. (In fact the lack of white cell production since the previous dose suggests that the bone marrow is not recovering as it should.) Without a treatment that can get rid of the cancer, a bone marrow transplant is also ruled out. From our doctor's perspective - but not ours - there are no more treatment options.

Joshua is in some pain now, and he feels aches and itchiness and sensitivity to touch, particularly on his head. He is tired, and has a cold with sore sinuses. The nodes are growing visibly, and he will continue to take steroids to keep growth to a minimum, and pain killers to do their job. The rest is up to Joshua, us his parents, and you his supporters. We believe that we can get through this, and will continue to pursue options.

Changed tack

Monday's blood test shows that white blood cells are down to 1.4, and yesterday Joshua was in hospital for a blood top-up. He has been experiencing increasing pains around his abdomen, and yesterday Dr du Toit said this is the lymphoma enlarging the lymph nodes again, and the fact that blood counts have not improved over the five weeks since the last chemo dose seems to confirm this. The pattern is similar to what happened previously, and indicates that the last high-dose chemo is not adequate. The plan had been to stop chemo and do a bone marrow transplant once the blood counts had improved. The doctor now believes radiation treatment is needed to deal with it, as a bone marrow transplant cannot be done until the cancer is under control, and the chemo dosage can't be increased with white blood cell counts so low.

After finishing the blood transfusion at 2:00, we went to see Dr Davids at 3:00 about the radiology treatment. He was very helpful about explaining how it works and what the side effects could be. The process would be to do a CT scan next week to literally create a map of the lymph nodes that need to be targeted with very precise doses of radiation. They would tattoo tiny dots on his skin to create a 'fix' for permanent reference. During treatment, which takes only a few minutes each time, certain organs are shielded and the doses are calibrated to ensure the correct depth and to avoid reaching places where it is not needed.

This could start the week after next, and continue for a month of daily doses. Then there would be a scan 6-8 weeks after completion to see how successful it was (the radiation continues to work after the patient has stopped receiving treatment). In the meantime he is back on steroids to shrink the nodes to reduce the pain; and until the steroids do their work, painkillers started yesterday are already working.

Update on 4 April: The doctor brought the scan forward, and Josh had it done yesterday - that's just to map out where the radiation will be targeted - and the treatment is scheduled to start on Wednesday next week. (Josh wanted to have a little tattoo done while they were marking his abdomen, but they wouldn't do it.)

Why don't hospital operators care more?

Dr du Toit today says the bone marrow tests show no clear evidence of Lymphoma. He is quick to point out that this doesn't mean it is gone, just that it doesn't show up in the Lymphoma markers. There are certain cells that could be Lymphoma, but at their current stage of development they are indistinguishable from healthy cells. But he is optimistic. The second chemo treatment is now underway, and Josh has been upgraded to a private room this time - at no extra cost - because there are adults in all the other haematology rooms.

When we arrived at the hospital this morning, we were delighted to see that the resident guinea fowl have had another batch of chicks. They look about a week old, and are pottering around the hospital grounds, along with the ducks. But when we went to Joshua's ward, we were appalled to see heavy machinery out the window, busy destroying the area where we used to go for walks on the grounds, and even taking down mature trees. It was a private park with trees and grass and pathways for patients to get some exercise and enjoy the outdoors. The area is to be paved as a parking lot. A PARKING LOT. Apart from the reduced amenity of the hospital grounds, Joshua's doctor pointed out that digging up the soil disturbs spores and other organisms in the soil that patients should not be exposed to if they have a compromised immune system.

The close link with the outdoors is one reason I like this hospital, but this destruction has brought it down in my estimation. And while I am in a complaining mood, here are a few other shortcomings:

• The food is not prepared to suit the dietary requirements of patients with different conditions. Not only that, but it isn't even particularly healthy food. Standard lasagne, cottage pie, vegetables - but with sugar added, and cooked to death to remove any goodness. Josh has complained it tastes terrible every time he is asked to rate the food.

• The building is not designed for minimising the need for air conditioning, and air conditioners can harbour micro-organisms. Though not all architects seem to recognise it, there are clear strategies to minimise heat gain from the sun. And fresh air could be brought in through vents with filters, but the only source of fresh air in this building is through open windows.

• The hospital makes no effort to control air quality in other ways. I have seen them install carpeting and use furniture made from chipboard that gives off formaldehyde and other unhealthy gases. Considering that building assessment tools like Green Star, LEED and BREAAM give credit for improving air quality in buildings for healthy individuals (offices, shops, schools and so on), you would think that hospitals would take even greater care. But no, it's just a business.

 

chemo tomorrow

Initial results from the bone marrow biopsy indicate that the cancer markers (see below) have gone down. That's good news, since it means that the chemo is doing its job. There are further tests being done, and we should get the results of those tomorrow.

Josh will start his next course of chemo tomorrow, continuing for three or four days in the hospital. So he should be home again by Saturday.

...

Note for the technically-inclined: A biological marker, or biomarker, is defined by the NIH as "a characteristic that is objectively measured and evaluated as an indicator of normal biologic processes, pathogenic processes, or pharmacologic responses to a therapeutic intervention." What this means, as I understand it, is that there are molecular characteristics that can be used to indicate whether a person is healthy or has a particular medical condition, and whether the person is responding to treatment.

Generally, each medical condition has markers that are identified by comparing how the markers' characteristics differ in people with or without the condition. In other words, studies are needed for each condition in order to determine how reliably its markers can be used to indicate that the condition exists in a patient, and to show how the markers change when treatment is successful. For certain conditions, no clear markers have been identified, or there is some ambiguity, which makes them hard to diagnose.

Within the general category of Lymphomas, there are certain types that do not have reliable markers. I suspect that this may be why the doctors have had trouble pinning down Joshua's condition. The condition he is being treated for is Diffuse Large B Cell Lymphoma (DLBCL), which is the most common form of Lymphoma in adults, but the choice of treatment depends on a more detailed identification within this category. I don't have info on how this was done in Joshua's case, or what the sub-type is.

Change of plan

When we last saw Josh's doctor, he suggested he might increase the chemotherapy dose, as the Lymphoma seemed particularly aggressive. Josh was to begin the second course with a one-week hospital stay beginning today, but the doctor has confirmed that Josh's cancer is not responding as hoped, and he wants to change the plan. The new medication may begin tomorrow or the day after. The plan now is to administer the strongest possible dose over three days, and do this three times. If this works, he will also harvest stem cells "just in case" a bone marrow transplant is needed. Meantime, Josh is at home and today feels a bit less pain than earlier in the week.

Recovery week that isn't

This week was supposed to be one of recovery for Joshua before starting his second course of chemo in this second cycle of treatment, but it's not working out that way.

Following his first course on the drip from 15 to 20 December, he was in hospital for a full two weeks (unplanned) from 23 Dec to 5 Jan. He was discharged after his temperature had stabilized below 37 degrees Celsius for two days. He had a small infection, and the doctor threw a number of different antibiotics at it in the hope that one of them would work. If that hadn't been successful, he would have stopped all of them to see if it was the antibiotics themselves keeping his temperature up - but that wasn't necessary.

For much of those two weeks, Joshua felt ok, other than the frustration at having to be there. But on the day he was discharged, his back was sore, so yesterday (Tuesday) he saw the chiropractor. (He had been inactive for three weeks, so we thought maybe the sudden increase in activity was the cause.) That provided short-term relief, but by nightfall he was in severe pain, displaying the same symptoms that had betrayed the return of the Lymphoma. He hardly slept last night, and today saw his haematologist, who said he was concerned that the white blood cell count was as low as it is, and that the cancer in the lymph nodes is responding very aggressively and causing pain in the liver and spleen.

Joshua is now on stronger pain killers and steroids to shrink the lymph nodes. Tonight he is already feeling much better, but this is just to buy time until the next course of chemo. In light of the aggressive response, the doctor will be reassessing the chemo treatment, but the next course is still scheduled to begin next Monday, 12 Jan. The treatment is already one of the strongest, but it may need to be stronger. The doctor says the first cycle of chemo often seems more effective than subsequent cycles, because the cancer rebounds more aggressively if it does come back a second or third time.