What Does My Treatment Look Like?

Before diving into the specifics of my treatment regimen, I think it’s worth covering some of the basics about cancer treatment. It’s an extremely complex topic, as I’ve come to find out, but sticking with a general overview should be sufficient for the sake of this post. 

The first thing to know when it comes to cancer treatment is that there’s no one-size-fits-all solution. Regimens primarily depend on the type of cancer, its extent or spread within the body, and patient health profile. These factors will tend to dictate how conservative or aggressive a treatment plan needs to be to have the best outcomes. Within a doctors toolkit of treatment options the main weapons are typically surgery, chemotherapy, immunotherapy, and radiation therapy. Thankfully, scientific breakthroughs are happening all the time and are expanding those toolkits with more novel therapies. 

When I first met with my oncologist and began discussing my treatment plan I had plenty of questions. Thankfully the doctor had all the answers, but we only covered the basics. Since then, I’ve done a bit more reading on my own to get a better understanding of how it all works. While I’m certainly no expert on the matter, I’m happy to share what I now know about treatment for my cancer and for clear cell renal cell carcinoma (ccRCC) in general.

If kidney cancer is detected in its early stages it can often be addressed using surgical means, either by a partial or radical nephrectomy. In the case of a partial nephrectomy, the tumor is removed and as much of the unaffected kidney tissue as possible is left intact. For a radical nephrectomy, it’s practice to remove not only the tumor but potentially the entire kidney, adrenal gland, and surrounding lymph nodes if affected. When cases of ccRCC aren’t detected until their later stages, however, more systemic treatments (i.e. - treatment that travels throughout the body as opposed to targeting one specific tumor) are frequently employed. After those treatments have controlled the spread of disease, then surgery may be revisited as an option to remove the original kidney tumor. 

In my case, with the cancer already having spread quite extensively, surgery on the kidney was not an immediate option. The reasons being that 1) cutting anywhere around my kidney could cause more cancer cells to spread in the area, and 2) it wouldn’t be healthy for me to undergo surgery while in an already weakened state. Instead, we went straight into systemic treatment . For many types of cancer, chemotherapy would be the first choice, but ccRCC doesn’t respond well to chemotherapy treatment. So, with that out of the picture, what’s the next line of defense?

Luckily, there is a current combination therapy of an immunotherapy called Keytruda (pembrolizumab) paired with a tyrosine kinase inhibitor called Lenvima (lenvatinib) that has been in use for five years now and has proven to be extremely effective. These two drugs combined create a powerful 1-2 punch that will hopefully slow down and reverse growth of the tumors found in all the different parts of my body. Keytruda is an immune checkpoint inhibitor, which works by blocking a pathway in cancer cells that allows them to hide from the immune systems T-cells. So instead of cancer cells being able to replicate undetected, they become unveiled and subject to the strength of the bodies own immune system, which can fight them off naturally. Lenvima works by stoping angiogenesis, or in simpler terms, it prevents the tumor from building the blood supply it needs to grow. 

I like to imagine it as one drug (Lenvima) putting the tumor in a headlock to choke it out while the other one (Keytruda) comes in to hit it with body blows and finish it off! 

Figure 7. Therapeutic evolution and survival outcome of metastatic ccRCC through the four different eras.

Hsieh JJ, Purdue MP, Signoretti S, Swanton C, Albiges L, Schmidinger M, Heng DY, Larkin J, Ficarra V. Renal cell carcinoma. Nat Rev Dis Primers. 2017 Mar 9;3:17009. doi: 10.1038/nrdp.2017.9. PMID: 28276433; PMCID: PMC5936048.

As for dosing of these medications, I take the Lenvima orally at home every day. The Keytruda requires me to go into the hospital for an infusion every three weeks, but the process is quick and it coincides with my oncology team check-in appointments so it not a big burden. Every six weeks in addition to my Keytruda I also receive an infusion of a drug called Zometa (zoledronic acid), which will help strengthen and rebuild my damaged bones. One additional bout of therapy that I received was a series of five radiation sessions while I was an inpatient. This was targeted on the majority of my thoracic and lumbar vertebrae with the intent of rapidly attacking the metastatic lesions in that area and thereby reducing the pain that I was feeling throughout my spine. As of now, I don’t have any other radiation treatments planned.

It’s so early in my treatment plan that we really don’t know what’s going on inside me yet, but I feel like things must be improving already. The Keytruda is a slow-acting drug so it probably hasn’t made much, if any, impact just yet, but I believe the Lenvima has been working to cut off those tumors and slow the previously unchecked growth. We’ll have a much better idea of this when some imagining is done in a few months to actually see the difference in my tumor burden. 

In the meantime, it’s all about managing the treatment side effects. I’m not taking chemo so my hair isn’t falling out, but I am having other side effects that are challenging in their own rights. In particular, I’m having a lot of GI issues including nausea, vomiting, and loss of appetite, which has resulted in significant weight loss and weakness. I’m currently down about 30 lbs, putting me at about the same weight I was my sophomore year of high school. While I’m dealing with that, on the opposite side I’m trying to fight off constipation caused by the opioids I’m taking to control my pain, so my insides are very confused right now! I’m also extremely fatigued most days, which makes it hard to focus enough to even do things like read and write this blog. Recently, I also had a 10-day spell of esophagitis (inflammation of the esophagus) as a result of my radiation therapy. This made it extremely painful/uncomfortable to swallow anything at all, which was torture for someone who loves to eat. 

In the coming months, the risk of potentially severe side effects from the immune therapy may increase, so that’s something we will need to closely monitor as well. The goal is to be taking cancer medications on the “highest tolerable dose” and that limit is something my doctors and I will continuously be trying to dial in together. 

So for now, this is where my treatment stands. As I progress and my doctors see how I’m responding to the medication they may make adjustments going forward, especially if we hit a point where I’m not responding to the current regimen any longer. Fortunately, there are other options to try, and hopefully in the coming years there will be even more effective and targeted options as well. We are currently in the Golden Age of kidney cancer treatment and for that I’m extremely thankful. I also feel extraordinarily lucky to be based near the Boston-Cambidge area, which is literally the global hub for cancer research. 

While I may have been dealt a shitty hand with this diagnosis, I feel like I have the absolute best care and treatment in the world at my fingertips. All of this together gives me a lot of hope for the future. Until then, I’ll just continue to keep my head up, smile, and take things one day at a time.

Sources for this post include:

https://pmc.ncbi.nlm.nih.gov/articles/PMC8858035/

https://pmc.ncbi.nlm.nih.gov/articles/PMC5936048/

https://www.cancer.gov/types/kidney/patient/kidney-treatment-pdq#_1374

https://www.keytrudalenvimahcp.com/advanced-renal-cell-carcinoma/#clear-cell-rcc-trial

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What is metastatic renal cell carcinoma?