Status. State of the Art.

STATUS

In May, 2018 my oncologist, Dr. Weckstein, fired me.

I had been seeing him once a year. During my visit I mentioned that I was nine years post-diagnosis. We discussed whether it was time to call it a day. He said, “You’re a bright guy. You know all the questions I ask. Night sweats, belly or back pain, etc. Call me if you need me.” I thanked him for looking after me all these years, and we parted ways.

As of now, July 2020, I continue to be cancer free.

STATE OF THE ART

The treatment described in this blog took place eleven years ago. That’s an eternity in medical research. The question arises: are better treatments available now? Is the treatment described in this blog now obsolete?

A brief review of current NHL literature shows that R-CHOP is still the most common treatment for Diffuse Large B Cell Lymphoma (DLBCL). To that extent, this blog is still relevant. However, diagnostic methods have improved, especially the use of genetic testing. In some cases protocols other than R-CHOP are prescribed.

When I was treated systemic methotrexate was administered as central nervous system prophylaxis. Methotrexate is still administered, but through the spine (intrathecally) rather than systemically.

Finally, radiation therapy on the contra-lateral testis is still an important part of the treatment, as it was in 2009.

So, if you are on R-CHOP this blog might be useful to you. But be sure to search on the Internet for current information. http://www.uptodate.com is a site that has information from top experts in the field. Access to the patient side of the site is free. It is well worth paying for a subscription that gives you access to all the articles. When I was being treated, uptodate was indispensable.

Checkup. Prostate cancer.

Today (November 4, 2013) I saw Dr. Weckstein for a checkup. Everything looks good. The only change in my health is that I have developed lactose intolerance. Many things can cause this, including old age and chemotherapy.

In my March, 2013, checkup Dr. Weckstein remarked that this was the fourth anniversary since my diagnosis. I have always counted the years starting from the time I finished treatment. This makes we wonder: when I read about “five year progression free survival” (PFS) is this measured from diagnosis or from treatment’s end?

I checked on the Internet. It seems that PFS is measured from when treatment starts. This makes sense, as the cancer can’t progress while you are being pumped full of chemo drugs, or when it’s being bombarded with radiation.

So in March, 2013 I will have 5 years progression free survival. This means I am cured of non-Hodgkin lymphoma. Or as close to cured as a cancer survivor ever gets. Nevertheless, it will be a good excuse to buy a bottle of champagne and to raise our glasses in a toast.

When I was originally diagnosed with non-Hodgkin lymphoma, the doctors wanted to check for prostate cancer too. They did a biopsy and took seven cores. The diagnosis was that I did indeed have prostate cancer, but it was a mild version. I had a Gleason score of 3/3 and there was only 5% involvement of the prostate.

So in May of next year, Dr. Weckstein wants to do a repeat biopsy. I am ambivalent about this.

There is no doubt that I have prostate cancer. Finding out its current status could be instrumental in saving my life.

But a prostate biopsy is not a benign procedure. The risk of infection is high, so I will have to take strong antibiotics. The procedure can lead to incontinence. There is also a chance that I will become impotent, at least temporarily.

Add to this the fact that my PSA was 4.1 and the digital rectal exam (DRE) found no lumps on the prostate.

Also, a study has been done examining the effects of lifestyle on cancer progression. The results were that a low fat diet, coupled with a lot of exercise, markedly slows the progression of the disease. Since 1998 this has been my lifestyle. If you want to see the study you can find it here

Finally, prostate cancer is slow growing. I’m 75 so the chances are I’ll die with it, not because of it.

So I am in a quandary as to what to do. I will spend the next six months researching the new diagnostic tests that are becoming available for prostate cancer. Then I’ll have to do battle with Dr. Weckstein. Dr. Weckstein, a trained oncologist, versus a layman. I know who I’d bet on.

Adriamycin, Mt. Washington and my heart

Chemotherapy drugs sometimes have vicious side-effects. Adriamycin (also called doxorubicin) can cause heart damage. Adriamycin is part of the R-CHOP treatment that all non-Hodgkin lymphoma patients get. A characteristic of Adriamycin is that the heart damage can manifest months or years after the end of treatment. I have to stay vigilant to identify any problems with my heart.

What are the chances that my heart will become damaged? Happily, they are not very high. I’m almost three years post treatment and my heart is ticking along fine.

There is another reason why I am optimistic. The dose of Adriamycin that I received was less than most non-Hodgkin lymphoma patients get. Here’s why:

I was set to get six courses of R-CHOP. After the fourth course I was in a bad way. I collapsed one day and my red blood cells were so low that the doctors were considering a transfusion. I found some studies that concluded three courses of treatment were sufficient for patients like me. I discussed these with Dr. Fisher and he said we could terminate the R-CHOP. If you want to see a complete discussion of this sequence go here Babysitter. Collapse. Aftermath. Computer. Visits. Card. then here Milestone; Going forward; Visits; Beard.

So I got less Adriamycin than other patients, but how much less? And how close was I to getting a dangerous dose? To get a full understanding of this, it’s necessary to run the numbers.

Doses of many drugs are prescribed on the basis of milligrams per square meter of skin surface (mg/sm). Based on my height and weight I have 1.77 sm of skin. The formula is: skin surface in meters squared is

the square root of (height x weight / 3131)

where height and weight are inches and pounds respectively.

If you look in my R-CHOP drug logs (here, here, and here) you will see that I had 87 mg of doxorubicin (Adriamycin) each time. Dividing this by my skin area (1.77 sm) shows that I had 49 mg/sm each time, or 196 mg/sm over the four courses.

According to Wikipedia, “When the cumulative dose of doxorubicin reaches 550 mg/sm, the risks of developing cardiac side effects, including CHF, dilated cardiomyopathy, and death, dramatically increase.” Thus, at 196 mg/sm, I am well below the level of maximum danger.

So mathematical analysis says that my risk of heart problems is low. But what about the real world? How is my heart function when I exert myself?

In 2010 I entered the Mt. Washington Road Race. You can read about it in the epilogue to my e-mails. On June 16, 2012 I participated in the race again. I had spent five months training for it. I was up to three hours on the treadmill at 2.8 mph and 12% elevation.

The training is brutal and the race even more so. The elevation gain is 4,650′ in a distance of 7.6 miles. During the race my heart beat at 75% or 80% of its maximal rate for almost three hours. If my heart can do that, I have to conclude that it is healthy.

So my health seems to be good. This was confirmed on 8/14/12 when I saw Dr. Weckstein for my scheduled checkup.

But it was not all joy and celebration. I still have prostate cancer and Dr. Weckstein wants to do a prostate biopsy next year. Cancer is the house guest you just can’t get rid of.

Postscript:

The acronym “CHOP” can be confusing. It stands for four drugs used to treat non-Hodgkin lymphoma. Yet Adriamycin and doxorubicin don’t seem to be in the list. The problem is that the same drug can have multiple names. Here’s a Wikipedia entry (slightly modified) that resolves this confusion:

Cyclophosphamide (Cytoxan), an alkylating agent which damages DNA by binding to it and causing cross-links.

Hydroxydaunorubicin (also called doxorubicin or Adriamycin), an intercalating agent which damages DNA by inserting itself between DNA bases.

Oncovin (vincristine), which prevents cells from duplicating by binding to the protein tubulin.

Prednisone or prednisolone, which are corticosteroids.

More on radiological testing

If you click on the Diagnostics menu item and then click the “Follow up exams” item you will see that I don’t have any imaging done. This was a calculated risk on my part. With no imaging, if the cancer returns it will take longer to find it. On the other hand, I avoid the risk that the imaging could cause new cancer.

I am comfortable with this approach and, so far, it has worked well for me. On February 7, 2012, I saw Dr. Weckstein and he gave me a clean bill of health. As in previous exams, my blood work was normal and there was no sign of a relapse. I am now two and a half years post treatment, which means I am past the period of highest risk of relapse.

An article written by James O. Armitage strongly influenced my decision. It’s title is How I treat patients with diffuse large B-cell lymphoma and it was published in Blood Journal. Here’s the relevant quote:

“Once a complete remission is documented, I would do no more images in the absence of some abnormality hinting at relapse or at the patient’s request. I know it is standard care in much of the United States, but this approach cannot be supported with data.”

By avoiding CT scans I limit my exposure to radiation. How important is this?

There is a growing body of evidence that shows CT scans can cause cancer. The risk is small, but increases with every subsequent scan or X-ray.

The following link is to an abstract of a study that shows the amount of radiation that patients receive each year.

Exposure to low-dose ionizing radiation from medical imaging procedures.

Below is a link to an abstract of a study that attempts to quantify the risks.

Radiation dose associated with common computed tomography examinations and the associated lifetime attributable risk of cancer.

If you want to study further you will find links to the full text in each of these abstracts.

Finally, here is a link to a very interesting table that shows the amount of radiation absorbed from sources ranging from sleeping next to your spouse all the way to a catastrophic meltdown of a nuclear power plant.

Radiation dose chart

CAVEAT

The material above describes how my treatment is conducted. It is not a recommendation as to what you should do. I have no medical training and am unqualified to offer medical advice. Your oncologist should always be your primary source for information and recommendations.

POSTSCRIPT

It is Dr. Weckstein’s and my judgement that it is a good thing that I avoid more radiation. This evaluation radically changes if there is an indication that the cancer has returned. In that situation, I would want a CT scan and whatever other imaging Dr. Weckstein thought was appropriate. The small risk of the testing causing cancer in the future is outweighed by the urgent need to get the information necessary to treat the cancer that exists today.

Checkup

On Thursday, March 18, 2011, I went for a routine follow-up exam. Before such visits, there is always the fear that the doctor will find that the cancer has returned. But this was the first time I had symptoms to back up that fear.

In February, I was in bed, sleeping on my left side. Suddenly I felt a pain in my chest which rapidly increased in intensity. I quickly turned, to lie on my back and the pain subsided. This was something brand new. On subsequent nights I experienced the same thing.

My best guess was that this was not a return of cancer. And I didn’t think I had a heart problem either, even though the pain was in my chest, and on the left side. I was training for a repeat visit to the Mt. Washington Road Race. I didn’t have any problems on the treadmill with the elevation set to 12%. I thought that my kyphosis (round shoulders) was the most likely cause of the pain. Still, it was possible that a return of the cancer could be responsible. I called Dr. Weckstein’s office.

The triage nurse asked me to try an experiment. She told me to take two Tylenol before going to bed and see if that helped the problem. If it did, then cancer probably was not the cause.

I took the Tylenol and it did indeed reduce the pain. So I decided to wait out the month until I saw Dr. Weckstein again.

Years ago, physiotherapists prescribed an exercise program for my kyphosis. Since I do a weight workout at the gym, I stopped doing most of these exercises. But the chest pain was an incentive to restart the program and this helped the symptoms.

During my checkup, I described the pain to Dr. Weckstein. He did a thorough exam, with special attention to my spleen. Everything looked good. He explained to me that any medical problem which improves is probably not cancer. If a problem is caused by cancer it only gets worse.

So I’m into my second year post-treatment and I’m still cancer free.

The highest risk of cancer recurrence is in the first year. The second year is nearly as bad. For years three, four and five, the risk of recurrence is much less. After five years of progression free survival, I’ll consider myself cured. Except that cancer patients never consider themselves totally cured. Nevertheless, on October 6, which is the second anniversary of my graduation from treatment and, incidentally, our wedding anniversary, we’ll share a bottle of champagne with dinner.

Welcome to my blog!

This blog is designed to be more like a web page.  To get an overview of the blog structure, click on “About”.

The blog presents information useful to people newly diagnosed with non-Hodgkin lymphoma, especially those with testicular lymphoma.  However, if you have questions that are not answered here, post them in comments to this and subsequent posts, and I will do my best to answer them.