Conventional Treatment

March 19th, 2018 Todd had his first Opdivo treatment. They brought us in a couple of days earlier to go over the consents to sign. It was a bit overwhelming, even though it was not chemotherapy, we were given the same paperwork/safety information and asked we follow it. Things I would have never thought of, like double flushing the toilet and washing his clothes separately. Basically to take precautions with all of his bodily fluids. We asked if we could continue with the essential oils that he had started using. The answer was not topically as it could affect the treatment. Todd also asked about marijuana use and the doctor had no comment. We know it has been proven to kill cancer cells.

I was able to join Todd for his treatments and appointments. Fortunately, having our own business allowed me to do that. There were many times when I thought that quitting my job was a huge mistake, but I am so grateful to have been through every step of this journey with my husband. I am also very thankful to have gained some more time with our daughter, Kloey in this difficult time.

That first immunotherapy treatment was very hard to be strong and I broke down afterward. I had been on the other side of cancer patients and seeing the love of my life receiving cancer treatment hit me hard! I had even worked with some of the nurses there, which did make me feel a little more comfortable. He had a very nice heated reclining chair and was offered all kinds of sugary snacks (cookies, ice cream, soda, etc.) Something does not seem right about that, knowing now that sugar feeds cancer!

It didn’t take long for some of the bad eating habits to return and the smoothies got less and less.

The plan was for Todd to receive treatment every other week for a year. with labs, scans and doctor visits in between. Todd’s next PET scan was a few days after that first treatment on March 21st, then we were waiting for the results.

On March 26th, Todd saw the Moh’s specialist there to remove a cyst on his forehead. The cyst had been there for years without any change to it, but his Dermatologist suggested it be looked at. It was removed and it was a benign hair follicle, weird!

We kept calling for the PET scan results and apparently the Oncologist was out of town and we finally received a call back from a nurse that told Todd that “it’s not good” and then went on to say that there were new spots in his lung and armpit. We were in a panic mode and couldn’t see the Oncologist until he was back in town. On April 2nd we saw the doctor after what seemed like waiting for-ev-er! He did confirm that there where new nodes in the left lower lobe (lung) and left axilla suspected metastasis. He did not seem very concerned about it and said to keep doing the treatments and just wanted to watch until he would order another PET scan in May. If that new scan showed growth then Todd should reconsider the lymph node dissection. So we tried to stay positive and continued treatments.

The six month dermatologist check-up came around and everything was clear there.

Next oncologist appointment was on May 4th. Todd’s blood work seemed to be great other than the %EOS that always ran high, but when I asked it was not a concern. The Opdivo drug had now been approved for Todd to have once a month dose. Another PET scan was to be ordered after this visit. By this time he had 4 treatments and should have the 5th before the scan.

Starting June 1st, Todd was sicker than I had ever seen him. He has never been one to get sick at all. Kloey and I would get sick but never Todd. This was different, he was in bed for almost a whole week! Most of the time with a fever and severe headache while alternating Tylenol and Ibuprofen. He was also in and out of the shower all day. He was scheduled for the PET scan on June 6th (someone forgot about it, and I had to call and ask why he was not scheduled) he felt good enough to go, thankfully.

Surprisingly, the PET scan results were ready the next day at the Oncologist visit. The doctor seemed irritated about the report. It said that one node in the armpit looked better while there where small areas that are different. The lung was unchanged and the small nodes in the abdomen could be related to melanoma…We were left a little confused after this report. Some things didn’t make sense if some areas were better and somewhere unchanged, but some were worse??? The doctor wanted to do a chest/abdomen CT scan in a month to check on the spots. The scan also showed sinus fluid and he prescribed an antibiotic along with a steroid (Bactrim and Dexamethasone). Todd would be on hold from the Opdivo treatment because of the new medication. The doctor also ordered a brain MRI since Todd had just been sick, they scheduled it for the same day in the afternoon.

We saw the doctor back in a week and the brain MRI results were normal but noted the sinus mucus thickening. His labs still looking good.

The next week Todd broke out with a rash all over his back, arms and face. The steroid was switched to a lower dose medication (Hydrocortisone) that should help with the rash along with suppressing the inflammation of the nodes. Ordered to continue with treatment.

The 6th treatment was scheduled on June 25th, and it was postponed because the rash was worse now, up into his scalp, neck, and chest. I picked up some topical hydrocortisone spray that seemed to help with the itchiness and kept it from getting any worse. The next treatment was done the following week.

Todd had the CT of his abdomen and chest on July 3rd. that followed with an oncologist appointment a few days later. The Oncologist said it looked ok and he was not worried about the lymph nodes. Keep doing Opdivo treatments every month and watch the rash. We questioned the steroid because Todd was having a harder time sleeping and had gained some weight. Apparently, normal Cortisol levels should be high in the morning and low in the afternoon/evening. Todd’s were a little low in the morning, which may be normal (and now we know, for him it was) and the hydrocortisone would substitute that and help with the rash.

The rash cleared up and Todd continued with treatments and the steroid which also caused him to continually gain weight. The next PET scan would be in 4 months. The doctor seemed confident that after that we could go to 6-month scans. Just the thought of that made us excited.

Around the beginning of September Todd started to feel a mass in his armpit, I felt it a little and thought it was probably still healing going on in there. His doctor said he didn’t feel anything different. The next visit we encouraged the doctor to feel the armpit again and said still did not feel anything.

His next Dermatologist appointment on October 1st, the doctor wants him to keep an eye on a mole on the right forearm. The 9th Opdivo treatment was on October 2nd and another PET scan on October 17th.