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