6 Chemo Products I Wish I had known before I started Chemo, by a former patient

I was a chemo patient from 1/2006 to 6/2006. It's hard to relive the experiences I underwent through 5 rounds of high dose chemotherapy. Chemo was easily the most difficult experience of my life, and it threatened to break my spirit. A LOT of pain and discomfort could have been avoided if I knew about the products on this list.

When I learned I would be a chemo patient, I thoroughly studied the phenomenon of chemotherapy, which is designed to be akin to carpet-bombing your entire body. I talked to many patients and professionals. Still, I was definitely not prepared for all that eventually happened to me. Most symptoms are inevitable and some have no recourse, such as low blood cell counts. But others, like mucositis, can definitely be assuaged if they are managed properly. There was much pain that I suffered because of this product knowledge gap. That is why I think it is important to go into chemo as prepared as possible, and have gone to the effort of preparing this list. Although chemo is tumultuous, at least we can prepare for it beforehand.

Because chemo is such an individualized experience, there are symptoms I describe that you will not experience. Conversely, there are things that you will experience that I never did. With regard to getting through chemo in general, there were so many things that were as important as any products you can buy, such as family, social support, music, and visualization, but I thought identifying products would be a good goal since these are easy to attain things that really make a solid difference in very typical and acute side effects. In the future, hopefully I will write about these personal and spiritual aspects to coping.

Hopefully, reading this list and making preparations from it will alleviate surprises. Also, it will provide talking points to further discussion with your healthcare team (nurses, physicians, social workers, family, friends, neighbors, employers/employees, etc.). Chemo is such a radical blow to your system, that not only are you unprepared to deal with the rapid and marked changes to your body, that you better believe those around you will also need to be prepared. Though most of us are prepared for hair loss and nausea, I was surprised how familiar I had become with things like visits to the E.R., drinking aloe vera juice, and not having enough energy to walk to the bathroom. Again, I emphasize that I was on a high dose regimen not widely available, so hopefully you will not endure all these symptoms. Talk to your doctors and nurses, as they have seen what happens to other patients with similar conditions and dosages as you.

I thank my friend Dr. Mohi Ahmed for giving me the encouragement to draw up this list as a way for me to give back to the community.

Finally, I am not affiliated nor do I benefit in any way from the sales of any of the following products.

The list:

Gatorade XFactor - I remember there were many points I was so nauseated, I could not tolerate anything whatsoever, even liquids, forget about food. I had tried all kinds of Gatorade and they all tasted horrible. A wonderful nurse told me about the Gatorade X Factor, which was a particular line of the product. and that other patients swore by it. My lovely wife went out and got me some, and indeed, it was my favorite beverage for those times when nausea and the infusions were threatening to dehydrate me, and I needed to absolutely drink something. Dehydration is an overarching concern for chemo patients and each individual will have different preferences for how to stay over the hump and out of the hospital on IV fluids, which is what happens when you get clinically dehydrated. Nevertheless, when you are bedridden is not an opportune time to find out what beverage will suit your persnickety taste buds. I advise you go out and get some of this stuff before your infusions. UPDATE: This product is since renamed Gatorade 02 Perform Fruit Punch-Berry, so watch out for it. N.B. Your stools may become red, but fear not, that is not bloody, it's the neon Gatorade!
Gelclair - There were times I had several mouth sores concurrently, and the pain was excruciating, even when I wasn't moving my mouth. The swishing and gargling didn't do much, and I didn't feel like drugging myself to the point of unconsciousness. Again, a sage homecare nurse suggested this dental product which forms a gooey coating on the inside of the mouth that was absolutely paradiasical. A must-have product for mouth sores that no doctor seems to know about about. Apparently, doctors don't know much about mouth pain and unforunately, dentists are not into the chemo health care team. As I mentioned, homecare nurses seem to know more about living with chemo than outpatient infusion nurses, since the real battle goes on outside the infusion center. It is sad that homecare is not a standard of care, and only some insurance plans cover it. I would not have been able to deal with chemo without my home care nurses.
Aloe Vera Juice - One thing they don't tell you about mucositis is that it scalds your entire digestive tract. So that means, its more than just your mouth, it's your throat, your esophasgus, your stomach, your gut, your rectum, your anus. Everything is stripped, withered, burning, intolerable. The gut sees its share of festering discomfort, and no health provider had anything meaningful to offer in this regard. Enter Aloe Vera Juice, a soothing tonic that removed much of the hot grumbling colitis. A half glass of this twice a day was indispensable to me in the second few weeks of each cycle. A word to the consumer: Not all aloe very juices are the same; only the inside part of the leaf should be used for the juice, NOT the entire leaf. I would recommend Lily of the Desert Brand. That's what I used.
Slippery Elm Bark Lozenges - Continuing with the mucositis miasma, the throat is the next thing after the mouth to start feeling pain. Before you start swishing lidocaine cocktails and popping hydrocodone, I would recommend Slippery Elm Bark Lozenges. These cool your mouth during sucking and drip onto your throat. I recommend Thayer's Brand.
Carafate - My stomach was a maelstrom of acid, devoid of lining, eating itself, and rumbling aimlessly. Believe it or not, all the antacids and Pepcid did not make the pain go away! Luckily for me, I knew my grandmother used Carafate, which is a syrup that converts to a foam that lines your entire stomach and leads to hours of peaceful stomach bliss. This was a lifesaver for me. For some reason, it requires a prescription, which your doctor should be glad to write you.
Belladonna - Back to my gut. At times, my colon became so parched, I had god-awful cramps that brought me to a fetal position and brought out screams and sobs from me. Nobody had any answers to this distress, but once again, I used a secret weapon that my foreign-educated mother had introduced me to years ago - Belladonna, which is phenobarbital, a barbiturate. Though it's technically addictive, it is indispensable for occasional cramps and I've never had a phenobarb cravings. As a matter of fact, I did not have cravings for morphine or hydrocodone after chemo either, even though I feared I would. As my favorite nurse said, if you feel the pain, take the drugs so that you can eat and drink and stay healthy.

Thanks for reading my list of indispensable chemo products. Of course, I left out the obvious ones, like anti-nausea meds Chlorperazine, Ativan, and Zofran, which deserve a discussion of their own. For the most part, nausea gets a lot of attention, and rightly so. Five out of six products in my list help with mucositis, which is just as debilitating, but more obscure than nausea. Good luck!