Still here March 2020!

Since the last update in 2015 a lot has happened and at this point in time I am feeling strong and healthy and I really credit my oncologist doctor Dr Robin Lifton and a new medicine Ibrance which is coupled with an aromatase inhibitor called Letrozole – for why I am still here and healthy.

One year ago today I suffered the consequences of stopping all treatment in the previous fall of 2017 and as a result, my calcium spiked and was damaging my kidneys.  That set me up for the flu which was really bad that year and both my now husband and I got the flu in early January 2017.

My flu developed into pneumonia and ultimately double pneumonia and I landed in the ER at around the third week of January 2018. My kidney function was really bad and I could not breathe. I have a history of asthma but it had not really affected me for the last several years. I still have a portable nebulizer which ultimately still did not help me when I could not breathe from the pneumonia.

My blood pressure was close to 200 for most of this time and I spent about 5 totally sleepless nights and days in the hospital. Finally I had a severe neck spasm while in the hospital (probably from lack of sleep and stress of pneumonia and breathing issues) and they refused to give me a muscle relaxer – not even one!  The hospital (which shall remain nameless) did not even have professional or drug store hot or cold packs to relieve my neck spasm!  The nurses would heat up wet towels in the microwave for me. Unbelievable

Finally on day 5 – after having the painful neck spasm for more than 24 hours – I checked myself out of the hospital and I feel that is the only thing that saved me from my life being ended in that hospital.

After not being able to eat for about a month and being on a liquid diet in the hospital I had lost quite a bit of weight and most all of my muscle. My arms and legs were sticks.  When i first left the hospital however, I had about 8 pounds of WATER WEIGHT that had to slowly drain. That is because they pumped me with water to try to help my kidneys but I think they actually did the wrong thing for me. I will never go back to that hospital ever again.

I met with my oncologist after getting out of that terrible hospital and she recommended I start on Ibrance and Letrozole and also start the Xgeva shots again. So that is what I did about one year ago today.

Now let me caution you on the cost of Ibrance. It is INSANELY expensive – like $10k PER MONTH! I was extremely fortunate to have my very good private health insurance cover the cost of this medication after my deductible has been met for the year. They cover it as a MEDICAL expense not a pharmacy expense and thus it is covered 100%.

I would have to say that the Ibrance/Letrozole combo has made a huge difference. I feel strong – have no pain or limping and even my hemoglobin is recovering after hovering around 8 for a few years.  Last test has it at 10.5 – 11 or 12 is normal – so I am almost there!

I have had to have at least 3 packed red blood cell transfusions because of the low hemoglobin. Last one was in the hospital a year ago. None needed since!

I have always worried about the potential side effects of the Xgeva shot but now have had the shot every month for a year and no side effects. Not sure if the doctor will keep me on this forever or taper off. 

My CA 27-29 has dropped to around 400 but it has not gone below 400 and is hovering between 400 and 500 in the last few blood tests. I get a full blood test every month.  At a couple of points in this journey my CA 27-29 was around 1200 – so I’ll take 400 any day.

Now one of the reasons I finally got around to updating this blog is because today I found out that a doctor I recommended to my Mother for her lung cancer – Dr Arnold Smith – was charged with trying to have his wife’s divorce lawyer murdered. He was actually found mentally incompetent to stand trial and still has not gone to trial for this attempted murder.  He was the doctor who Abraham Cherrix was ordered to get treatment from when he tried to go completely natural as a minor.  The government actually ordered he get some mainstream treatment and he chose Dr Arnold Smith’s Mississippi clinic.  I thought this Dr had helped Abraham Cherrix and could also help my Mother.

Boy was I wrong and we regret ever sending her to this CRAZY QUACK.  My sister rescued her and my Dad from this clinic and found my Mother suffering from BEDSORES and all sorts of sores from the radiation she was getting. Nobody was overseeing her care – my poor parents were left on their own.  I was assured that the person they stayed with named ROSE would be taking care of them and that all of Dr Smith’s patients stayed at this boarding house.  ROSE is also a criminal and my sister and I will be outing all of them to anyone who will listen – now that he has this sensational attempted murder charge against him.

To wrap things up – I feel that a mixture of standard oncology (no radiation or surgery) treatments and natural supplements to boost my immunity have gotten me this far.  I highly recommend taking Beta Glucan (can get from youngagain.com) and LivOn Labs Lypospheric Vitamin C, Glutathione and Alpha Lipoic – the LivOn Labs packets can be purchased on Amazon.com.

I have posted this now in March of 2020 and I am still on Ibrance with Letrozole and still feeling good. I am taking extra precautions due to the threat of Coronavirus since Ibrance lowers my immunity (ANC or neutrophils become low once a month toward the end of the Ibrance 21 day schedule) Since I did have double pneumonia after the flu in early 2018 I have been a germophobe but now I am even more so. I am making use of Walmart Grocery Pickup to avoid going inside the store and minimizing my exposure to any store when they are busy – so I go later on at night if I have to go to a store at all.