Mayo Clinic

Last Wednesday we traveled to the Mayo Clinic in Jacksonville for a surgical consultation for the removal of Todd’s lymph nodes. We choose Mayo because we have been doing some research on the lymphovenous bypass being done on patients with lymphedema. The procedure re-routes the lymph vessels to flow better when they are not working correctly. The whole ride up there my stomach was in anxious knots. My stomach is extremely sensitive to my anxiety, I mean without fail. However, I can say this was the first time in eight months that I have had this feeling on the way to see a physician. I was nervous and not just about the 3-hour drive there. I wasn’t sure what I was so scared about…we were not getting any results or even having a procedure done.

We arrived on the campus and it was absolutely beautiful! The lush landscaping, filled with blooming flowers and even some cool mushrooms. Honestly, it should look that immaculate, they get a tremendous amount of money donated each year. The number of cars was insane, by 10:30 the parking garage next to the building we needed to go to was completely full, which turned out to be a good thing because it was $5.00 and I would rather walk than pay to park any day. The walking traffic was just as busy and understandably, the Florida campus has an estimated 6,000 people on staff!!! They have one hotel and at least one restaurant. I was impressed by how accommodating it was at first glance.

Besides having Todd’s name in the computer backward the staff was very nice and we were not left waiting for long at all. When questioned by the nurse and the doctor, both seemed a little surprised that there has been no conventional treatment recently. The doctor was a surgical oncologist that sat on the board for melanoma. He recommended that the first step would be to have a PET/CT scan. Which Todd is ready for and even prepared for just in case they were able to squeeze him in that day (they could not). If the tumors are hopefully still only in the auxiliary region, they suggest the auxiliary dissection, removing all of the lymph nodes and ducts in the armpit area. This surgery is 2-3 hours long and comes with a few risks such as nerve damage, muscle damage, and lymphedema. The risk of lymphedema is about 20% and is more likely to happen in the lower extremities after nodes are removed from the groin area.

After surgery, the doctor would recommend the standard protocol of radiation to the area. But even he admitted that radiation does not have a good success rate with melanoma. Yes, you read that right…even though radiation has been shown to not be effective for melanoma, the treatment of care is still to have it done. Please tell me how the heck that makes any sense? Oh, and the risk of lymphedema goes up after the radiation too.

Speaking of making sense, the next call of action is to have immunotherapy drugs administered again. This time they would use the same drug, Opdivo along with another drug, Yurvoy together and that has been shown to work better. While I can agree that both drugs in conjunction with one another have been shown to have a longer lasting reoccurrence rate than either one used alone, I just don’t understand why it is to be included with something that did not work before. And the toxicity of both drugs in combination is greater. You know this always goes back to if we had only known then, what we know now...But there is a reason why that is not possible, we have to live through these things. I am going to paste the links below of this study that more explains these drugs for anyone who is interested. Have you ever thought about how many people actually stop and do their own research before making a decision on whether or not to start a new treatment drug or any other health choice?

https://www.chrisbeatcancer.com/immunotherapy-drugs-new-hope-or-more-hype/

https://www.statnews.com/2017/03/08/immunotherapy-cancer-breakthrough/

https://www.nejm.org/doi/full/10.1056/NEJMoa1504030

If the PET/CT were to show that cancer has spread, he would recommend only removing the tumors in the armpit as a palliative if they were bothering him, then go straight for “treating the whole body” and from an oncologist point of view, that only means treating with the immunotherapy drugs.

We asked about the lymphovenous procedure and it cannot be done at the same time as the removal. A patient needs to be diagnosed with lymphedema before it can be done. The procedure takes place down the arm and is checked to see where there are lymph flowing issues to be re-routed. Like traffic and road construction, if you don’t know where the problem is how do you know where to re-route the cars, which does make sense.

Todd was curious if the doctor would consider only removing the tumors and he explained that that was called “cherry-picking”. He agreed that he could take the minimal amount of lymph nodes, but any nodes left in that area would cause a higher risk of leaving the cancer cells. A description that was new to us, he referred to Todd having “no primary” as the “regression of primary site”. Yet another sign of hope…regression meaning reverse or return back to a normal state. This description makes it even clearer to me, that if Todd’s primary melanoma site healed itself, why couldn’t his body do the same for these lymph nodes?

The doctor mentioned more than once that he expected the tumors to appear bigger than they were. Although he did not come right out and say it directly, he also agreed that Todd must be doing something right holistically for them to stay fairly contained. That was almost all we needed to hear from the whole visit. Todd and I were on the same page and as we were walking to the car we realized that the page was not a conventional one. Our first thoughts were, how can we get to CHIPSA hospital in Mexico? I know not everyone understands this decision and that’s okay because it’s not about you. It is about believing in ourselves enough and trusting your own instincts. We all need to be self-educated about our health. This past eight months, Todd has been in charge of his own health and I believe there is a lot of power and freedom in that.

I knew now why my stomach was in knots, I knew that I was not going to like what the doctor said. It was the same shit different doctor! The answer is always the same when dealing with the medical oncologist. We cannot blame them because they are only doing what they are taught, they are taught medicine and specific protocols. I am not saying that conventional treatment or medication is necessarily a bad thing and we know plenty of people that have gone through it, some that even went to Mayo.

As for now, surgery is not completely off the table, just for this moment. Todd will have a PET/CT scan done in the near future, we ask for your positive thoughts and prayers and we will keep you updated.