Saturday, November 28, 2015

Chemotherapy Isn't Only For Cancer Patients

When you hear the word chemotherapy what immediately comes to mind? Cancer. Bald. Nausea. Vomiting. Infusions. Sterility. Bone Pain? Upon hearing that word, most people jump to the same conclusions, with the same general consensus on how chemo works, who receives it, and what side effects it has on the body. The truth is chemotherapy isn't only for cancer patients, and affects each patient differently depending on how it is used. 

Chemotherapy is a widely used class of drugs to treat many different disorders including, but not limited to: cancers, blood disorders, and a plethora of autoimmune diseases. Similarly it can be administered in many different forms: intravenously, topically, injected, or given by pill. Each chemotherapy affects patients individually depending on the of type of chemo and the dose given. While many cause major hair loss, sterility, and nausea, others do not. This does not mean however, that the drug being received is not a chemotherapy agent. 
All chemotherapies work homogeneously, to eliminate the growth of harmful cells in the body. Some do this by directly damaging DNA, interfering with DNA building, while others simply alter the DNA in a way we do not quite yet understand. The different types and dosages of chemo given are decided by your physician who can determine what the patient will benefit from most.

Lately there has been stir in the media about a young singer named Selena Gomez battling an autoimmune disease called lupus. Selena stated in a recent article that she was "going through chemotherapy." This statement was met with backlash from every corner of the internet with comments such as: "Chemo is only for cancer," and "You cant be on chemo if you still have hair!" Upon reading these comments I was baffled by what little knowledge the general public had on the effects and uses of chemotherapy! Chemotherapy agents are widely used in the autoimmune disease world in both low doses: to help control an over active immune system, and in high doses: to completely eradicate the immune system when a patient presents serious organ involvement. Even in patients like Selena, who don't necessarily have any visible symptoms, chemotherapy still takes its toll on the body, and is a highly dangerous drug. At low doses the patient may experience nausea, malaise, exhaustion, minor hair loss, mouth sores, and possible damage to ones reproductive system. They may receive their allotted chemotherapy dosing through weekly pill or injection -- though you would never know it.

As an autoimmune disease patient myself suffering from systemic sclerosis (scleroderma), lupus, and vasculitis, I have undergone both low, and high dose chemotherapy. I received weekly injectable low dose chemotherapy for two years, and a weekly pill form for another year after that. At that low dosing I had significant hair thinning, (including my head, eyelashes, and eyebrows) nausea and fatigue a few days following the injection, and damage to my fertility. Most people around me had no idea I was getting weekly chemotherapy, but I was. No matter how low the dosing, the class of drug and what it does for the body doesn't change, simply the side effects are lessened. Chemotherapy is chemotherapy no matter how you receive it, or how much.

Since I now have serious organ involvement with a fatal prognosis I have been moved to the higher intravenous dosing of chemo, one that the society acknowledges due to its obvious side effects. I have lost all of my hair, become sterile, and spent long nights in nauseated misery in the attempt to abolish my malfunctioning immune cells. I must follow this regimen every 28 days for the next year, then be switched back to the low dose weekly chemo for the rest of my life. Chemotherapy never ends for autoimmune patients like myself. 

No, I do not have cancer, but I am going through chemotherapy. 
For some reason the general population cannot seem to comprehend this. They believe chemo is somehow not "real chemo" if it isn't attached to a cancer diagnosis. This is absolutely inaccurate. Our IV bags are brought into the room in the same yellow Hazardous Material Bag, labeled with the same large block letters that read "CHEMOTHERAPY" in all caps, by a nurse who must wear protective gloves when hanging the drug -- just as a cancer patient. 
Again, the fact of the matter is chemotherapy is chemotherapy. Please do not demean patients going through such an aggressive, and life altering treatments if you truly have no knowledge on the situation. The disease you are receiving the treatment for makes no difference to the actual drug, and certainly doesn't make chemotherapy any less "real" -- just ask any patient receiving it. Yes, in the lower doses you will receive far less of the harsh side effects, much less than the typical cancer patient, but that doesn't mean you aren't receiving chemo. You are simply obtaining a dosage that the world is not familiar with, such as Selena received. 

Every patient receiving chemotherapy has a heavy load on their shoulders whether it be for cancer, lupus, scleroderma, MS, PNH, or any other illness. We are all warriors just trying to win back our bodies

13 comments:

  1. Just checking to see how you're doing :) I'm happy to see that you shared a fresh post. Looks like you're hanging tough. Still spreading knowledge I see, Keep those dummies on their toes !!! ;)

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  2. To add to your point, hearing the doctor say "chemotherapy" or even saying it out loud to yourself, is just as scary for non-cancer patients. Which is especially true because, like you said, it doesn't end for us. People talk of "beating cancer" but there's no beating an autoimmune disease.

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  3. thank you, for writing this, I am now on methotreate and prednisone , for wegeners and sjogrens, and I have got the most insane looks and comments....ppl really don't have a clue. One of my fb friends had a one year old who had stage 4 cancer, and she was posting pictures of her at Christmas time, playing with the tree, and ppl got so mad, telling her , her daughter could not have cancer , cause if she did she would of been in the hospital..not allowed home, and would of been sick in bed. Ppl really don't have a clue, and think that if its in a pill form that its not real chemo. I may have 2 years of this with more chemo possibly being added this week. I hope you are having a good day, hugs !!!!!

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    1. So very true Lisa! Hopefully this post can educate some of those individuals! Hugs!

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  4. Thankyou so much for explaining this. sending you a huge hug.

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  5. Have you thought about trying marijuana for the nausea? It really works.You can buy it in yummy cookies or candies so you don't have to smoke it.

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    1. Yes I have :) I use hard candies for nausea and headaches since I am unable to ingest or smoke marijuana. Thank you for reading!

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  6. Well said my baby was born with severe combinedimmune deficiency ( aka bubble baby disease) which is a autoimmune defiency and even though he only had low dose chemotherapy it was still scary I couldn't even imagine what he was going through it hurt me so much to watch him go through that . u all are WARRIORS no matter how low the dose is !!!

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    1. Big hugs to you and your family Cassey! Thank you for reading!

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  7. I read this post via a fellow spoonie friend on facebook. I have Hirschsprung's and with that comes a lot of struggles, flares, and pain. After a lengthy discussion about this method of treatment with my buddy, he stated to me that I might benefit from looking into treatment for my chronic flares, to which I've had for YEARS now and nobody seemed to know how to deal with them, other than me just 'pushing through'.

    I thank you for this post, as it opened my eyes to a discussion and possibility of managing those flares through treatment. I truly hope that this helps a lot more people out there, who might NEED this type of treatment for them.

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  8. My baby girl lost her life at the age of 17 after a human error while donating blood through the Red Cross. he was in the hospital for 13 months, receiving 5 different Chemo treatments in an effort to battle an unknown disease that had turn autoimmune. When she elected to shave her hair and rock a mohawk, many folks did not understand how she went from a surgery on her arm (the original site of the blood draw) to cancer....which she did not have. :( It was hell on her little body. Nothing but positive thoughts for you!

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    1. Oh my goodness Joy... I am speechless. I am so sorry for your loss. I cannot imagine the heart ache that must of come from this situation. What an absolutely tragic occurrence. My thought are with you and your family. Chemo is absolutely horrendous. I am so sorry your daughter had to endure it first hand. Hugs.

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