Month: June 2018

So you’ve beaten the odds and survived a year and a half of very tough treatments for Leukemia.  Congratulations!!  You know you should be so full of joy and enjoying each day as it comes along, and you really are.  But when you are quiet there is still that whisper of a voice in the back of your head reminding you of the seventy-five percent chance you are not going to survive past the next four years. 

I wonder if that is why I can no longer stand to hear the commercials on TV promoting some wonder drug or another.  I mean they really, really bug me now.  And don’t let me anywhere near those commercials promoting drugs to take during chemo!  I have to walk out of the room whenever they come on.

Maybe it is because I still am not one hundred percent recovered.  I mean I am almost there and can function fine; it’s just that last little edge isn’t back yet.  And that bugs me.  But maybe it is more the case that as many times as I tell myself I have accepted this as my new reality and have made my peace with whatever might come, I really haven’t.  Truth be told, that is a pretty huge thing to make your peace with.

In no way am I meaning to make this a “poor me” story in search of encouragement from others.  It is just my reality right now, and I am sure it is also the reality of many other people who have gone through similar situations and I hope are reading this.  Know that you are not alone.  I think it is best to call it what it is, cut myself some slack for having these feelings, continue to work at accepting this as my life now and to make the best of it.  And know that it will take some more time to fully “get there.”  And that’s okay, too.

And here are two GREAT reasons to be happy with every second of every day – my two (currently!) grand kids – Anne (age 6) and Porter (age 2 ½).  Yee-haw!!

 

While I have mentioned numerous times in my posts that I have had two Stem Cell Transplants, I realized there are a lot of people who don’t really know what they are.  So I will give you my version of what they are and how they work, but please do not take this as gospel.  Talk with your doctor about the details.

The American Cancer Society has a very good description of Stem Cell Transplants at: https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/stem-cell-transplant.html

WebMD also has good descriptions: https://www.webmd.com/cancer/features/stem-cell-transplant-types#1

While your body has all kinds of stem cells which contain the directions on how to create the organs in your body, I will be talking specifically about the stem cells that create the blood-making system in your bone marrow.  These stem cells are present in everyone’s blood stream.

When a person is diagnosed with Multiple Myeloma, this is actually a cancer of the bone marrow.  The bone marrow is the spongy material in the center of all your bones.  In this material are the cells that create your red blood cells (which carry oxygen throughout your body), your while blood cell (which serve as your disease-fighting immune system) and your platelets (which enables you to have blood clotting capabilities).  When these cells are created they are excreted through your bones and into your blood stream.  With Myeloma the cancer cells multiply in your bone marrow and crowd out the blood-creating cells.

As I have detailed in some of my earlier posts, there are a lot of different drugs and treatments both on hand and “in the pipeline” that are aimed at killing off the Myeloma cancer cells in the bone marrow.  In many cases, doctors recommend an Autologous (“Auto”) Stem Cell Transplant.

In these kinds of transplants, your doctor will initially give you different drugs and treatments, all of which are aimed at reducing the level of Multiple Myeloma in your bone marrow to as low as possible.  Many times they can’t completely eliminate the cancer, but the lower they can get it, the better.  These treatments can last anywhere from one month to several months.

Eventually they will get the cancer presence as low as possible, and then they will move into the transplant.  First they will give you a shot each day for a few days that will stimulate your body’s creation of your stem cells circulating in your blood stream.  Next they will go through the process of “harvesting” these stem cells from you.  This is a relatively painless process where they draw blood from one of your arms, send it through a machine that separates out the stem cells and puts them in a bag, and then returns your blood back into you in your other arm.  They have different things that impact how many of your stem cells they need to collect – your body size and if they are going to save a batch for a possible future second transplant.

Once they have collected your stem cells, it is time for the big guns.  Here is where they will give you a very serious and toxic mix of chemo drugs.  These drugs are intended to kill off all of your bone marrow throughout your body.  This is not fun you will likely get pretty sick during this part of the process.

After a few days and they determine the drugs have done their job and killed off all of your “old” and diseased bone marrow, they will infuse your stem cells back into your body.  Since they have killed off all of your old bone marrow, this infusion day is typically called Day 0 (sometimes referred to as your new birthday.)  Your stem cells will then migrate into your bone marrow and start setting up a new, “clean” shop where they will start creating all new, and hopefully disease-free blood cells.

Over the course of the next few weeks you will need to be monitored very closely.  First off, without any white blood cells you don’t have an immune system, so it is very easy to get sick and it can quickly develop into something very serious.  You will also be checked every day on the progress of your new blood creating system and if you need to have red blood cells or palettes infused, a boost given to your white blood cells, and/or an infusion of any of the many chemicals your body needs to survive.

Hopefully after a month or so, your new blood creating-system will be up and running in your bone marrow and spitting out disease-free blood cells.  But it will still take another month or two before you start to feel “normal” again.  As I described in an earlier post, going into the transplant in as good a shape as possible and then pushing yourself to start walking every day will be a great help in your recovery.

Sometimes doctors recommend a second, or tandem, transplant where you go through the entire routine again.  There are a lot of different opinions out there about this, so be sure to check around so you can make an informed decision.

In the case of my Acute Myeloid Leukemia, that was a cancer primarily of the white blood cells.  The “typical” treatment also includes a stem cell transplant, but this time using the stem cells from a matched donor.  This is where having several brothers and sisters comes in handy, since they are the most likely to be a match to you.  Otherwise you will need to check on your children and/or the National Bone Marrow Registry:  https://bethematch.org/

Once a matched donor is identified, the process is similar to the Auto Stem Cell Transplant, except the stem cells are harvested from the donor.  The big difference is the fact that your body’s natural reaction is to reject a new organ put into your body.  So you will be given countless drugs to hopefully mitigate and control this rejection process.  As a result, this kind of transplant is much, much tougher on your body.  I was told that I had about a 50/50 chance of surviving the first six months of the process.  That really hit me – basically the odds of a coin toss!

But this is when you need to pull yourself up and determine that you will be in the positive fifty percent!  It will be a long, hard fight, but you can do it.  I was told it typically takes a year and a half to two years before you get back to your pre-transplant baseline, and I have found this to be pretty accurate.  But just focus on one day of recovery at a time and before you know it, you will be there!

Sixteen years ago when I was forty-five years old and diagnosed with Multiple Myeloma (bone marrow cancer) I was told that it was an incurable, terminal cancer.  I was also told that I would be lucky to live for three more years.  But after some serious chemo, a stem cell transplant using my own “cleaned up” stem cells and more maintenance drugs I have survived way past my initial expiration date.  And I think my doctors don’t quite know what to do with me!

With all of the great work being done around the world, they have developed several new drugs and therapies so that now they tell newly diagnosed patients the life expectancy is more like five to seven years.  And truth be told, with all of the new drugs “in the pipeline” there is a now a reasonable hope they might find a cure for Myeloma sometime in the near future.

While this sounds all well and great, if you have recently been diagnosed with Multiple Myeloma it is easy to fall into the black hole of “I have cancer.”  And you do and it is terrible.  But don’t despair.  There truly is hope.  Talk with your doctor.  If you don’t feel like your oncologist is up to speed on all the newer treatment options, then find another doctor who is.  Go online and find people in your area that have Myeloma and see what they think of their doctors.  Do not waste time worrying about hurting your doctor’s feelings. 

The International Myeloma Foundation has an amazing web of support groups across the country.  Track down the group nearest to you and reach out to them:  https://www.myeloma.org/support-groups

You HAVE to be your own best advocate and look out for yourself.  While Multiple Myeloma is not necessarily the imminent death sentence it used to be, it still is not a walk in the park.  It seems to me like it is now all about trying any and all treatments that are available to buy time while they continue to work toward finding a cure.

And at the same time, making the most of the time we have been given!

For me, this is a very tough post to write.  Celgene.  This is an international pharmaceutical company that had its first real financial success many years ago when it discovered that the banned drug Thalidomide was good for treating Multiple Myeloma (bone marrow cancer).  They obtained the patent on the drug and developed (and patented) a very strict drug disbursement program, due to the highly toxic nature of the drug.  The worst of this drug’s side effects are the severe birth defects it will cause.  The drug they started delivering was renamed Thalomid.  It has several other possible side effects including peripheral neuropathy – that is the killing off of the nerves in your hands and feet.

Celgene initially sold Thalomid for a few hundred dollars for a twenty-one day (one month) supply of pills.  Celgene increased the price of this drug steadily over the following years.  Several years ago Celgene developed a next-generation drug from Thalomid called Revlimid.  It is very similar to Thalomid with its severe birth defects side effect, but it is not quite as bad with causing peripheral neuropathy.  While other pharmaceutical companies have since developed their own drugs for Multiple Myeloma, Celgene’s Revlimid seems to still be the leading drug that is prescribed internationally to treat Multiple Myeloma. 

Another stated side effect of Thalomid and Revlimid is the five to ten percent possibility of the eventual development of a secondary cancer – like Leukemia.  Sixteen years ago when I was initially diagnosed with Multiple Myeloma, I was told my odds were that I would be lucky to live for three years.  So the small possibility of developing another cancer “somewhere down the road” versus the need to take what was then the only viable life-saving drug  was a no-brainer.  Of course, bring on the Thalomid and Revlimid!

After my initial treatments and stem cell transplant using my own “cleaned up” stem cells, I continued taking Revlimid for much of the next fifteen years as a maintenance therapy.  Unfortunately, guess who was in the five to ten percent group who might develop a secondary cancer – little old me!

Celgene has continued to increase its price for Revlimid to where it now charges somewhere near seven thousand dollars a month for a one month supply.  While I cannot find the Company’s quote to notate here, I understand that Celgene has stated they feel they are entitled to charge as much as “other life-saving drugs are charging.”  I calculated that over my fifteen years of treatment with their drugs, my insurance company and I paid nearly one million dollars to Celgene.

According to Celgene’s 2017 Annual Report:   http://files.shareholder.com/downloads/AMDA-262QUJ/6318532010x0x978672/138C3639-1839-499D-8191-34F9E08A0CBD/Celgene_AR_complete_PDF_041718.pdf 

Celgene collected over eight billion dollars in sales last year from Revlimid. Over eight BILLION dollars in one year alone!!  Celgene makes so much money from its portfolio of drugs that its CEO is paid over twelve million dollars a year, between his salary and company stock.

But Celgene is not run by fools.  They are very good at donating money to support the International Myeloma Foundation, the Multiple Myeloma Research Foundation and the Leukemia and Lymphoma Society as well as several other Myeloma support organizations and activities.  They also support some doctors around the world with their research efforts.  And of course, you will see their company logo included everywhere they make a donation.  Also, like most pharmaceutical companies, they have a program to provide low or no-cost drugs to patients who cannot afford them. 

However, here is an example of how Celgene’s support works.  They typically make an annual donation to the Leukemia and Lymphoma Society to support that organization’s fund to help Myeloma patient’s pay their medical insurance costs.  I personally know of one case of a Myeloma patient in North Carolina who turns in his four hundred dollar a month Medicare insurance receipt and he gets reimbursed for this cost by a grant from the LLS.  Great!  But then Medicare pays Celgene its seven thousand dollar a month cost for his Revlimid prescription.  Hmmmm. You do the math.

As much as I want to hate Celgene and blame it for my past year and a half life-threatening fight with Leukemia as well as my current unemployment, I know that I quite likely would not be here if it wasn’t for me taking their drugs.  I would have missed seeing my three children graduate from high school and college, their two weddings and two (and counting!) awesome grandchildren.

As you can tell, this has been a very hard thing for me to get my brain around.  At the end of the day I guess I have to accept the bad along with the good.

I’ve learned something the hard way.  Pay attention to your body and how you are feeling.  Doing the typical guy thing of putting it off and not paying attention because it isn’t convenient is NOT the way to go.  Same with the old “I don’t have the extra money on hand right now to pay for a doctor visit.”  Maybe some women do this too, I don’t know, but I suspect they are much smarter than that.

One morning I woke up, went to shave and when I looked in the mirror I saw that I had bruises all over my chest and arms.  They weren’t painful and I called to Nancy and asked her if she had been slugging me the night before in our sleep.  Without missing a beat, she replied “not any more than usual.”  When she saw the bruises she immediately said that I need to go in and see my doctor.  Of course my immediate reaction was that I didn’t have time for this because of meetings at work.

But at Nancy’s insistence, I went in to my oncologist’s office.  While they were drawing my blood I was thinking how I had been feeling pretty run down lately, but then I had also been working very hard on a special event project at work.  But there was no avoiding that I was looking like a five day-old banana.

Come to find out that my blood counts were out of whack – everything was low, especially my platelets.  My doctor repeated the blood tests later in the week and my platelets had dropped even further.  My doctor then had them take a bone marrow biopsy.  This is where they drill into your hip and remove a little bit of your bone marrow, which is then sent to the lab.  This was on a Friday and my doctor said they should have an idea what is going on by the next Friday.  So I compartmentalized all of this and went back to work and my life.

Well, the next Tuesday afternoon I was on my way back to the office from a meeting and decided to partake of a guilty pleasure – a lunch from Taco Bell.  I walked back to my car intending to eat my lunch “on the road” on the way back to office when my doctor called me on my cell phone.  I sat in the Taco Bell parking lot listening to my doctor tell me that he was sorry to tell me that I had Acute Myeloid Leukemia.  After he explained to me what it was, he told me that I needed to go into the hospital the next day for a month of extreme chemo treatments, and then I was looking at a long period of treatments. 

I was stunned.  I asked if I really needed to go into the hospital the next day, December 1^st, and spend all of December in the hospital.  He told me that if I didn’t, I would likely be dead in two weeks.  Well, guess who went into the hospital the next day?  That afternoon I drove to the office, packed up my stuff and put together instructions for the rest of the staff to cover my work, then went home and told Nancy.  Needless to say I lost my appetite and was not able to eat my delicious Taco Bell lunch.

Moral of the story – pay attention to your body and DO NOT put off having things checked out because it is inconvenient.  And maybe don’t go to Taco Bell for lunch, although I am not ready to totally write that one off yet!