Tag: carcinoid syndrome

Hello everyone.  I hope this post finds everyone doing well.  I just wanted to give a brief update on where I am as far as the new tumors and the new chemo regimen.  So I just started the second round of chemotherapy yesterday morning.  This had me pretty upset because I should have started Monday morning.  The problem was that while my insurance company was fine with using the Rocky Mountain Cancer Center pharmacy, which is in the same building as my Oncologist, they decided they wanted to use a mail order pharmacy in Florida.  My chemotherapy drugs were scheduled to be delivered last Friday from RMCC, but this was cancelled due to the pharmacy change.  So now I am at the mercy of the insurance company and the new pharmacy, and no chemotherapy drugs.  They finally called late afternoon on Tuesday to verify information and get the medication delivered overnight.  The bad thing about a situation like this, is that it is not the fault of anyone I spoke with on the phone.  It is just large company, bureaucratic bullshit.  I spoke with the pharmacist in Florida and expressed my frustration and severity of the situation and he assured me it would not happen again.  This is why it is imperative that you advocate for yourself and have a good support system.  It could literally be life or death.

So now onto how the treatment is going.  The first round of the new chemotherapy went well overall.  My treatment now is a mix of three different medications.  The first is what I have been using for a little over 18 months.  This is the injection of Lanreotide, which is just a synthetic version of the hormone Somatostatin.  The Somatostatin hormone is a Growth Hormone Inhibiting Hormone (GHIH) that blocks the release of insulin and glucagon in the body.  I am not a chemistry guy or doctor, so I don’t know exactly how all of that works, I just know it has been found to slow the growth of tumors in Carcinoid Syndrome and neuroendocrine tumors on the pancreas (I have six of those also…Yay me!)

The first new drug is called Capecitabine.  I take 1500 mg twice per day for 14 days of a 28 day cycle.  The body basically changes this drug into a chemotherapy drug called fluorouracil, which stops the body’s cells from making and repairing DNA.  Cancer cells need to make and repair DNA to multiply and grow.  I know, mind blown!

The second new drug is called Temozolomide.  It is classified as an alkylating agent.  Alkylating agents are most active in the resting phase of the cell.  Temozolomide has been most useful in treating a type of cancer known as anaplastic astrocytoma and glioblastoma multiforme, both of which are types of brain tumors.  The best way, as I understand it, is that cancer cells have three phases; the resting phase, the growth phase, and the multiplying phase.  This drug kills cells in the resting phase.  As most of us are aware now, there is no way for chemotherapy drugs to tell the difference from a cancer cell and a non-cancer cell, so it kills them all,  That’s right, the chemotherapy drugs kill you while killing the cancer.  Again, yay me.  And before anyone comments about it, I understand that your nursing degree or medical degree, far outweighs my Wikipedia degree.  But as we are all aware, Wikipedia is all-knowing.

Now the good stuff.  Side effects.  While there are several listed side effects of each drug, I have only experienced the most common ones listed:

1. Nausea and vomiting.  This is one of the worst.  I think I hate the nausea more than even the pain.
2. Pain.  I have chronic pain now anyway, so it is hard to tell if the chemo is adding to it.  They don’t know if it is from the multiple thoracic surgeries, the cancer, or the drugs, or maybe a combination of all of them.  Oh boy, mix and match pain game!
3. Extreme fatigue.  This is no joke!  When I say fatigue, it is crippling.  It is very hard to function and I just kind of collapse and sleep.  Nothing, and I mean nothing, can motivate me when this hits.
4. Low white and red blood cells.  The danger here, and why I don’t take Covid-19 lightly (or any other type of flu or sickness), is the lowered immune system and ability to fight off infection.  I had two pulmonary embolisms last fall which led to pneumonia.  I have never had something take me down like pneumonia did and I have been told the respiratory illness associated with Covid-19 is “like breathing glass”.  You don’t want that.  The low red blood cell count makes you fatigued and difficult to do any kind of exercise, like riding my bike. As most of you know from previous posts, riding my bike is imperative for our trip to Europe to, well, you know, ride my bike.  And before any of my cycling friends suggest; I have already asked about erythropoietin (EPO).  No dice.

So that pretty much sums up what I wanted to bring up in the last post, but didn’t have time due to our drive back to Greenwood.  The wedding went off without a hitch, by the way, and I want to give a shout out to Patrick and Amber Glover.  I wish you both a lifetime of love and happiness!  I also want to thank Aaron Vaziri and Lyndsy Lomoro for opening up their home and lives to us for a week, so we could hang out and see friends and family!  It was great to see everyone.  If I didn’t get a chance to see you (you know who you are), we will get it done on the next trip back to Indy!  In the meantime, I am continuing to gear up (pun intended) for our Tour de France cycling trip next July.  I will be adding a section to the site that tracks my training as well as my nutrition and mental strategies that will help me successfully ride three stages of the 2021 Tour!  It is going to be even more fun with anyone who reads this blog to hold me accountable!  I am going to add a couple of other sections to the site as well.  As I learn more about the blogging world and how to navigate the site and the features, it will only get better!

That is all I have for you at the moment, so everyone take care, have a great weekend, and I will catch you all next time.

Just Keep Moving,

KG