December 28, 2016 - Losing Hair

Well, the doctor said I would start losing hair at about this time, so I guess I won't escape that one.  If I just run my fingers through my hair, individual hairs just fall out.  I did notice in the shower that I would get hair in my face.  Now I know why.  My hair is about an inch long, so it is probably time to cut it shorter.  I will confess that it is upsetting to lose one's hair after 40+ years of staving it off with Rogaine.  The only problem is that with this particular chemo it doesn't come back in many patients.

I'm still feeling okay in spite of having a light cold.

Les

December 26, 2016 - Oops

Last night I was doing some research and discovered that Grapefruit Seed Extract and grapefruit juice can interact with cancer drugs.  "Continued use" can reduce the effectiveness of the chemo drugs.  I have been taking GSE since the 7th day, with some regularity.  I did this out of habit since we do this on most trips to build immunity against everything that travel exposes us to.  It does work, but now I will stop using it.  The choice: cold or ineffective cancer treatment.  I guess I will take cold.

As a result of this discovery I lost sleep last night and have a scratchy throat today.  :-(

We leave tomorrow evening.

Les

December 25, 2016 - Feeling Very Good

Well, we got on the plane on the 20th and flew to Florida.  Kathe made me wear a mask and she cleaned the seats on both planes with alcohol and put a towel behind my head--all to avoid my getting something while my immune system is compromised.  The trip was fine for me the whole way.  I had no discomfort at all.  The only difficulty was that somehow at some point I broke a blood vessel in my eye, making me freaky-looking--especially wearing my mask.

On the shuttle from Orlando to The Villages I sat up front and Kathe sat behind the driver.  The van was totally full and we were the last stop.  During the trip Kathe got car sick and wouldn't trade seats with me.

I don't know whether it was the car sickness that lowered her immunity or it was just bad luck combined with not taking the prerequisite GSE that I always take before traveling to boost my immunity, but she ended up contracting a bad cold.  Of course I have appreciated all of the steps she was taking to prevent me from catching anything, but in the meantime she is now my biggest threat. We are avoiding each other as much as possible.  I  have developed a runny nose, but I am pretty sure it is allergy to Florida because I have no other symptoms.

From a chemo treatment standpoint I seem to be in the period when my body is trying to recover from the chemo onslaught by hopefully rebuilding my white blood cell count.  I do want my body to be working on this process instead of trying to fight a cold.

As has often been the case during my ordeal, I received more suggestions for treatment that in this case the van driver, who had retired from owning 30 doctor's practices, gave me.  The first was alkaline water since cancer apparently "likes" acidity.  The second was to drink a cabbage smoothie every morning to rebuild  my damaged digestive tract.  The third was to eat Saltine crackers because they contain pectin or some such chemical that attacks cancer cells.  So far, I went with the cabbage smoothie and have made two so far.  My digestive system thanks me because it seems to be returning to normal.

The bottom line in all of this:  The first chemo treatment has been pretty tolerable.  I just hope it is  doing its job along with the Lupron.  We'll get results the day before the next treatment on 1/3.

Merry Christmas to all!

Les

December 19, 2016 - Nadir and feeling better

Toward the end of yesterday I started to feel better.  Back on the 16th I had a minor 100.2 degree fever because I was fighting something, which explains some of the additional aches and pains.  The fever broke the next night and now I am back to a normal temperature.  Along with the normal temperature came some lessening of the pain.  Yesterday was likely the nadir for this cycle.  (Back on 12/14 I explained the cycle.)  From now on I hope I will be in the healing mode while my body regenerates white blood cells and restores some portion of my immunity.  I’ll still have these pains and will have impacts on my digestive system but I will deal with these effects.

The pains are largely due to micro spasms in various muscles.  If I could get rid of the spasms, I know my quality of life would be greatly improved.  In this light, Kathe and I went through the process (or should I say racket) to get me a medical marijuana card.  I know most think of the medical aspects of marijuana in terms of getting high, but this is not the case when patients stick to a cannabis derivative CBD to alleviate pain and tremors.  With my doctor’s blessing, I tried some CBD.  I am happy to report that my spasms and pain reduced—all without any other side effects except for a slight headache.

Some patients, in addition to taking CBD, take small dosages of psychotropic versions of cannabis like “Indica” to help them sleep.  I have no desire to get high, so I will pretty much stick with CBD in its liquid form.

Now that I know all of this, I am convinced that the drug lobby is behind the whole anti-medical marijuana campaign.  CBD is a heck of a lot better than Tylenol with far less collateral damage.

December 16, 2016 – Feeling It, Day 3

Last night at 3:30 I woke up with spot pains starting in my kidney area and then shoulder, knee, leg, and back.  They were dull pains like you feel when you bump against something.  They weren’t the sharp pains one associates with neuropathy.  They disappeared after a few seconds and another would come at a different place, apparently in beat with heart rate.  This continued for two hours and then morphed into butt and left leg pain due to muscle spasms.  I was able to sleep a lot of the time, thanks to being able to adjust the Sleep Number bed and regulating the temperature of the electric blanket.  I’d like to think the pain was associated with killing cancer cells!

This morning I am feeling fatigued, but it really helps to be up and around.  My left leg feels a little weak, but it works.  Walking the doggies in the rain was a challenge.  They just can’t stay under that golf umbrella!

Otherwise I am doing well.  Thank you for all of your support!

December 14, 2016 – First Chemo, First Day

I learned a lot during the first treatment, thanks to the infusion nurse, A.J.  First, the steroids I took the day before have had the effect of making me feel very good physically.  This continues through today when I stop taking them.  I will therefore start to feel the full effect of the Docetaxel on Thursday or Friday and may feel fatigue and nausea.  Each chemo treatment goes in cycles.  The first 4-7 days is the onset, then another 7 days of maximum attack on all dividing cells in the body (nadir), then the recovery period for another 21 days.  For side effects the worst period is the nadir period.  This is also the time I will be most vulnerable to infections because my immune system is being compromised to the max.

During the early period my body will also be passing the Dosetaxel out through bodily fluids, which means I need to be careful not to pass them to anyone else.  Mainly this means extra flushing of the toilet and no sharing of drinks or food with anyone. 

To protect myself from infection I have to be careful not to cut myself, exposing my blood to the natural harmful biologics that are on my skin.  I have to take frequent showers.  When in public I should avoid contact and if I do, wash my hands frequently.  If I travel, I need to be very sensitive to cleaning or covering public surfaces I touch (such as armrests and areas of contact for my face).  On an airplane I need to wear a mask and if the mask gets wet, I need to replace it. I also have to rinse my mouth after eating because mouth sores are typical.  Since we are planning to travel, I am going to have to be careful.

If I feel nausea, I should take my medicine immediately.  With luck, the medicine will act quickly, but if 30 minutes pass, I have a second medication to take.  Hopefully I will have minimal discomfort due to nausea.  I hate nausea!

I also don’t like diarrhea, which is another potential side effect.  With Kathe’s help I am sticking to our low sugar, high veggie diet, which should minimize nasty effects in both nausea and diarrhea.  We’ll see.

I was told that I will lose my hair by thinning starting in a couple of weeks.  I will lose all my hair on my head in only a couple of weeks, so I am thinking of cutting my hair really short for my trip next week.

On to the store to get masks, rubber gloves, and hand sanitizer…

December 10, 2016 - First Treatments

I have been using third person as I describe the ordeal, but I think it will be easier to describe what I am going through in first person from now on.

In the last post I had received my second opinion at UCSD that was essentially the same as the doctors at Scripps.  Both prescribed the same treatment:  Lupron hormone blocker (also termed "Androgen Deprivation Therapy") combined with Dosetaxel chemo for 6 treatments over 18 months.  Neither organizations offer the addition of natural remedies to augment the administering of the drugs.

I have made the choice to continue treatment with Scripps instead of switching to UCSD, largely for the reasons I gave in the last blog:  (1) I find Dr. Bhangoo, the Scripps oncologist, to be incredibly responsive to ex-appointment questions and concerns, and willing to make himself available to me, (2) Dr. Bhangoo has demonstrated a willingness to do some research into less traditional treatments to augment the standard treatment he and Dr. Testy have prescribed, (3) the Scripps location for infusion of the chemo is much, much more convenient. 

I did receive some good news from Dr. Bhangoo.  He had read about a new test by Quest that attempts to detect and measure metastasized cells in the blood.  Outside the normal diagnostics, he ordered this test for me.  The test showed no metastasized cells in my blood.  This would lead one to believe that this enhances the chances for a successful outcome.

As I have read more and more about the Lupron/Dosetaxel regimen, I am struck by how Draconian it is.  It is a total shotgun approach; one size fits all.  Starve the feed mechanism (testosterone) and kill all the fast-dividing cells in the body with the hope that we get the cancer cells.  In the meantime the patient has all kinds of nasty side effects and in some ways is left with no immune system to continue to fight the cancer if it hasn't been eliminated.  The only good news is that in spite of this, patient outcomes have been found to be better than treatment with hormone blockers like Lupron and no chemo.  

Incidentally, scratch that idea in my last post that this chemo is different from others.  It is, but Dosetaxel is the same stuff that is used to treat breast cancer, so from that I know that it does cause nausea, lack of appetite, and mood changes, to mention a few.  It is less intrusive than what they use for leukemia, but nevertheless still nasty.

It is important to note that hormone blocking is almost always the prescribed starting point for this disease.  Most all other treatments (like immunotherapy or radioactive drugs) are only applied if the cancer fails to be stopped by eliminating testosterone.  For this reason there are few if any studies that skip the Lupron step.

I am planning to continue taking Modified Citrus Pectin during chemo.  As I described on 12/3 I am getting very positive results from my Saw Palmetto/Stinging Nettle Root/Modified Citrus Pectin/Low Sugar Diet regimen.  MCP in particular seems to cause the body to intensify its attack in the process of causing cancer cells to commit suicide.  It has also been found to counteract some cancer’s natural resistance to chemo, so the $120/month for MCP may just be worth it.  It just may increase the odds of getting all of the cancer.  The only concern is the possibility that MCP might lessen the impact of Dosetaxel.  I have been searching for papers on this.

I don’t think I will continue on the Saw Palmetto and Stinging Nettle Root since they generally have the same effect as Lupron and I don’t want to mess around while going through the chemo treatments.

It has been 3+ days since the Lupron shot.  I feel no side effects yet.  I start the Dosetaxel in two days and have to take a steroid first to counteract some of the Dosetaxel side effects. 

I will continue to keep you posted.

Les

December 3, 2016 - Decision time

Well, Les has now seen his Scripps oncologist and an oncologist at Moores Cancer Center and the prognosis is the same.  Both are prescribing Androgen Deprivation Therapy (Lupron or equivalent) to lower testosterone levels as close to zero as possible, combined with chemotherapy (Dosetaxel) every three weeks for 6 sessions.  Lupron will first be administered in a one month dose and then three month doses, depending on how his body responds from reducing testosterone levels.

The oncologist at Moores was most interested by the fact that his PSA was so low, given the progression of the cancer into his bones.  The oncologist is going to look at the pathology of Les’s original biopsy 20 years ago to see if there is any anomaly that could explain this.  IMHO questioning this tells us that the medical profession puts too much credence in the absolute value of the PSA and not enough in the rate of change.

We discussed with the doctors what might happen if Les doesn’t do anything.  The Moores oncologist said Les would have maybe one or two years of gradually increasing pain in his bones and eventually he would succumb to it.  The Scripps doctor was less definitive on the timing, but described a similar quality of life.  Since the ADT and chemo on average has given patients at least 4.5-5 years, not doing anything is not an option.  Both doctors have said that because Les is in pretty good physical shape, his chances of a good outcome are high.

Les asked about the advantages of going to a big name, big facility.  The main answer is that there is some likelihood that a clinical trial could be taking place at one of these facilities.  This could or could not have an impact on Les’s treatment.  On the negative side, the treatment experience itself would likely be less personal.  This was his experience at Memorial Sloan Kettering 20 years ago.  In this light, Les is going to continue researching clinical trials but is likely to start treatment locally, now that it is pretty clear that the standard of treatment seems to fit his case.

Les has been doing is usual research into both the medical therapies and the alternative therapies.  Studies have shown improved results using some of the alternative therapies, although little has shown that alternative therapies alone will stop Stage IV prostate cancer.  Combinations of standard and alternative therapies make sense, but neither doctor has experience with combinations of chemo and alternative therapies.  This appears to be the case with most all treatment centers, but Les will continue to search for combination therapies.  My PSA has decreased from 2.89 to 2.11 in the last month, which I believe is due to a combination of the Saw Palmetto, Stinging Nettle Root, and Modified Citrus Pectin.  Diet may also be a factor, but from my reading, diet may explain the increase in testosterone from 180 to 254 during the period that we have changed diets.  This is because high sugar, refined foods, etc. tend to reduce testosterone levels.  PSA reduction is most important since PSA is generated by the cancer, so we aren’t going to change our diet unless Les starts losing too much weight.  It is very important to maintain a healthy diet during this.  Les has lost 4 pounds so far.

One thing is really important to understand.  No two types of cancer are the same, so the treatments and the drugs can be very different with equally different results.  For example, immunotherapy (the use of the body’s own defenses to fight the cancer) has worked in some types of cancers but apparently is iffy at best with prostate cancer.  Also, body’s reactions to chemo prescribed for one type of cancer can be totally different from a different chemo treatment for a different cancer.  Docetaxel, which is used for prostate cancer, generally doesn’t cause pain or even nausea.  It does cause (hopefully temporary) loss of hair and fatigue.  The side effects of the ADT are much worse, including muscle loss, depression, heightened moods, night sweats, loss of sexual function, etc.  Les is not looking forward to these side effects.

Les is scheduled to get his ADT shot on Wednesday of next week, assuming he decides to stay with Scripps.  There are logistical advantages to Scripps such as being 15-30 minutes closer and a much less frenetic environment.  Since the treatment at both centers is the same, it comes down to personal preference.  Kathe was impressed by the bedside manner of Moores (coffee, friendliness, etc.).  Les likes the responsiveness to out-of-appointment questions, and seeming willingless to learn about alternative therapies on the part of the doctor at Scripps.  We’ll see, but Les is eager to get going on the treatment out of fear that the minor lower back pain he is feeling is caused by the cancer and will get worse.

November 30, 2016

Next steps

Les is seeing his oncologist at Scripps tomorrow for a new blood test that is in Phase 3 trials that measures free cancer cells in the body. This is to get a better assessment on the nature of the spread. He'll also test PSA and testosterone levels to see if the new diet and supplements have had any effect. The next day is an appointment to see an oncologist at UCSD.

November 24, 2016

ABSTRACT

This is a living document that describes Les Briney’s status as he fights prostate cancer.  The following is an outline of the steps Les has gone through:

1.      Had prostate cancer in 1996 and was treated with radioactive seeds at Sloan Kettering in NYC.

2.      10 years later, with urology appointments every 6 months, Les sees a rise in his PSA from a low of .1 to 1.0. 

3.      Treats PSA with hormone blockers and it goes back below 1.0

4.      In 2014 the PSA goes above 1.5 and is again treated with hormone blockers.  Les is concerned but his urologist didn’t appear to be.

5.      In late 2016 Les changes urologists on his request and coincidentally his PSA rises from 1.0 to 2.89 in less than 7 months.

6.      The new urologist does what the previous urologists didn’t – he orders a bone scan.

7.      Les is diagnosed with Advanced Stage IV Prostate cancer which means it has spread to his bones.  This should have been found much earlier.

8.      Les’s oncologist is prescribing Lupron, a testosterone blocker, plus Dosetaxal chemotherapy for 18 weeks.

9.      Les scheduled other doctors for second opinions and will see urologist/oncologists the week after Thanksgiving.

10.  Les will start treatment after December 2 unless the second opinion suggests something different.

11.  In the meantime Les is on a low sugar diet and is taking various proven supplements.  He is only feeling minor back pain that may or may not be due to the cancer in his hip bones.

HISTORY

20 years ago Les discovered that he had prostate cancer.  Being the consummate engineer, he researched treatments and ended up going to Sloan Kettering in NYC to have radioactive seeds implanted in the prostate to kill the cancer.  For the whole 20 years Les went to urologists every six months for checkups.  For the first 8 years his PSA scores were low as expected.

 

By the 10 year mark the scores started to rise, even though they were still low by most all measures.  To deal with the rise to 1.26 in 2009, Les’s then urologist, Dr. Nachtsheim at Scripps, prescribed a low dosage of Finesteride for three months and this lowered the PSA to below 1.0.  Then the PSA started rising again, this time to 1.20.  Les was concerned at the time and when Dr. Nachtsheim retired and Les tried to get a urologist with experience with prior cancer patients.  He tried to see Dr. Carol Salem, but the appointment would have been months in the future and in a private practice only loosely associated with Scripps.  Scripps assigned a urologist who prescribed Casodex under the same low-dose regimen.  That urologist went on to better things and Les went to his newest urologist with a PSA score of 1.0. 

Les was concerned that the new urologist showed little-to-no concern about the rising PSA.  As a result Les subsequently asked for Dr. Konijeti on the advice of a friend and also a patient of Dr. Konijeti.   Les’s PSA when he saw Dr. Konijeti was 2.79 having almost tripled in 7 months.  Dr. Konijeti gave Les orders for bone scans and made the next appointment in two months.  Although Dr. Konijeti didn’t convey a particular sense of urgency for the scans, Les, feeling pressure from Kathe and from his own concerns, scheduled the bone scans that week.

Dr. Konijeti called the next day after the scans (Nov. 8^th), and told Les that the bone scan showed evidence of the spread of the prostate cancer to his bones.  He referred Les to the head of the Oncology Department.  Les immediately called to make an appointment with Dr. Kosty only to find that the next available appointment was a month later.  The scheduler asked if it would be okay to see a Fellow, Dr. Bhangoo.  Of course Les said “yes” and went to see Dr. Bhangoo in two days.

PROGNOSIS

Dr. Bhangoo gave Les and Kathe the bad news that the cancer had spread to Les’s skull, shoulders, chest bones, some of his vertebrae, his hips, and his knees in varying degrees for each location.  He explained that prostate cancer often spreads to the bones when it metastasizes.  This is termed “Stage IV Advanced Prostate Cancer”.  The good news (if it can be called this) is that it generally stays in the bones.  The bad news is that it ultimately destroys the bones, so it needs to be stopped.  In Les’s case the bone damage has shown few symptoms.  Only now can he attribute some of the aches and pains that most consider to be normal to areas that have some bone damage.  For example he occasionally feels some lower back pain that may be caused by damage to bones in that area.

Note:  For any of you reading this who have had prostate cancer, your urologist/oncologist should be scheduling bone scans periodically.  This was not done in Les’s case, perhaps because he has had such a low PSA or just lack of experience on the part of his urologists, so Les is now paying the price.  The point is that PSA number itself is a bad marker to follow.  Change in the PSA appears to be a much better marker.  Les should have had a bone scan in 2009 at minimum.

Dr. Bhangoo said that my case with low PSA is unusual.  He has seen patients with PSA levels in the hundreds and even thousands.  I didn’t get the impression that this means much in my case, but it was an interesting data point.

THERAPIES

The standard, prescribed treatment in cases like Les’s is to stop all production of testosterone via a hormone blocker like Lupron.  This is because testosterone feeds prostate cancer.  This should curtail more spread, and in many cases is the only approach used.  Lupron is given via a shot in one-to-three month increments, the frequency of which is determined by the testosterone levels.  This is called Androgen Deprivation Therapy or ADT. 

For Les the second prescribed attack is on the cancer itself via chemotherapy, using the drug Docetaxel, which gained FDA approval in 2012.  This is normally used when the Lupron doesn’t work, but in Les’s case Dr. Bhangoo said that the combination has extended the life of patients at least a year.  Docetaxel is taken every three weeks over 18 weeks.  It is administered in an infusion center for three hours.  It has the typical side effects like hair loss that other chemotherapies have.

Aside from the above treatments, there are several other treatments that are most often used if the ADT and Docetaxel hormone treatments don’t work.  They are as follows:

1.      Additional Hormonal Therapy - In some cases where ADT doesn’t work, additional hormone treatment can be prescribed.  This is using drugs like Abiraterone and Enzalutamide that further interrupt the hormone/cancer growth cycle.  Side effects can be significant.

2.      Radiopharmaceuticals – Medicines that contain radiation that systemically seek out the cancer and destroy it.  (Metastron or Xofigo)

3.      Vaccines and immunotherapy – Based on the patient’s own blood that is taken and enhanced so that it uses your immune system to kill the cancer. This is somewhat experimental and has mixed results. (Sipuleucel-T)

4.      Bisphosphonates and Denosumab – When and if the cancer affects the bone function itself (called Skeletal-Related Events or SRE’s) these drugs can be used to both to bring calcium levels down and/or to reduce the risk of more SRE’s.

5.      Natural Remedies – All of the above are the approaches that are prescribed by the traditional medical community.  Largely outside of the medical community there are many therapies that have demonstrated success in less rigorous trials.  The medical community mostly discounts these therapies with the one possible exception being diet.

a.       No sugar diet – It is well known that sugar feeds cancer growth, so the thinking is to cut off the sugar source.  This is done by cutting sugar out of the diet.  This can be done by juicing non-starchy (high carbohydrate) vegetables and avoiding all kind sweeteners.  To avoid excess weight loss, protein and fat levels need to be increased.

b.      No processed foods – It is thought that the chemicals in processed foods contribute to cancer, so like sugar, the diet would cut out all processed foods and contain only organic foods.

c.       Saw Palmetto & Stinging Nettle Root – Trials have shown that this combination reduces testosterone levels and attacks cancer cells.

d.      Modified Citrus Pectin – This is apparently from the white stuff between the sections in your citrus fruits.  It has shown in trials to inhibit cancer growth by intercepting the communication between cancer cells.

e.       Lycopene – Most of the literature points to this as a prostate cancer preventative but some feel it has some cancer reducing properties.

f.       Active hexose correlated compound (AHCC) is an extract of mushrooms from the Basidiomycete class, including shiitake mushrooms - Has immunomodulatory and anticancer effects.  Large human studies are lacking, but it shows that it can improve the response of the immune system in mice with chemotherapy-weakened immune systems.  AHCC is used extensively in Japan with medicine to improve immune response.

Other therapies not applicable when the cancer has spread to multiple locations:

      6.    External Radiation – If the cancer is localized, radiation is applied directly to the site. This is               done externally through many methods including proton beam and 3d conformal beams.  Les               is not a candidate for this because the cancer is all over the place.

7.      Ablation techniques - Use a needle to destroy tumors with heat, cold, or electric currents.

TREATMENT

Les wants to make sure that his treatment is the best possible choice for his particular situation.  He is interested in all therapies, including natural remedies.  Actually he would like to find a program that is integrative, in that it considers all therapies in prescribing treatment, but this is not easy to find.

At this point (11/23/2016) Les is chafing at the bit to see doctors at UC San Diego to get another opinion for treatment.  He has postponed treatment during this period in case a better treatment fit is prescribed.  For instance, for immunotherapy, the patient must not have started any other treatment.  UCSD has several clinical trials that center around some of the alternative therapies, so Les hopes that their program is more integrative.  The earliest appointments that he could get were on December 2^nd.  He is seeing both an oncologist and a palliative specialist.  Palliative specialists tend to view the situation more holistically.  Scripps also has palliative specialists, so if Les decides to continue treatment at Scripps, he would enlist the aid of a Scripps palliative specialist.

In the meantime, thanks to Kathe’s research, Kathe and Les are on a low-to-no sugar diet and are eating organic foods.  The no sugar diet is tough for us sugar-eaters!  Les is also taking Saw Palmetto, Stinging Nettle Root, and Modified Citrus Pectin. The good news for Les is that he has lost 6 pounds, but he doesn’t want to lose any more.  Also, after less than three weeks of just the Saw Palmetto and the Stinging Nettle (before the diet change), his PSA dropped from 2.79 to 2.51.  Of course that could be due to other factors.  It will be interesting to see the numbers next week, after more than a month of the diet and supplements.