On Thursday, I awoke extremely anxious, as you can imagine. I needed answers. We needed answers. The entire drive down to the hospital (a 2 hour drive) Tony was experiencing lots of acid. He drank a cup of water with his breakfast. By the time we got to PMH, he was in need of a tums. While we were in the waiting room to see his oncologist, he said to me that he felt like throwing up. I didn’t have time to respond because it just came up. All over the floor. Nothing to catch it in. The staff helped, but it was too late. Luckily, they gave him a room with a bed to lay in and rest. THAT CAME OUT OF NOWHERE!
The girl in charge of the clinical trials came in first to see us. She was extremely apologetic for the clinical trial application not being accepted. The reason was due to his treatment (valcade) back when diagnosed. He has exhausted this chemo drug and that disqualified him from this trial :( She was genuinely upset for us.
So, we waited for more information from the oncologist. When she came in, she sounded hopeful for another clinical trial. It’s called KPT-330. A chemo that attacks the cancer cells a different way. It is an oral medication. Commitment as far as travelling is less than the other one. It is used for patients with Multiple Myeloma and Non-Hodgkins’ Lymphoma, Leukemia types as well as others. Sounds hopeful. As one friend shared with me….things happen for a reason. Perhaps we were declined because this is a better one. This drug is not yet approved in Canada or USA. This chemo causes nausea, diarrhea, vomiting and weight loss. But, they will be giving him pills to combat those symptoms. His creatinin numbers continue to climb the wrong way…..The bone marrow test last week shows the myeloma is doing good, but those tumors continue to grow. They are recommending a picc line for easy access for medicine & hydration. He was told by oncologist to force drinking and eating food because this will kill his appetite. Daily hydration via IV may be a must. Actually, he is showing dehydration signs now so she ordered home care to do daily visits for the next 7 days. These clinical trials have a qualifying process. He needs to have an MRI of his brain, eye exam and I think an Ecogram. As of today, still no call for appointment times :( Even the doctor wouldn’t guess at how long this would all take. Meanwhile, he is on week 3 with no treatment. One other concern was his platelets need to be over 75. Thursday, he was in the 60’s……Anyone know how to naturally increase this? They won’t give him a platelet infusion.
He was sent to get hydrated via IV in the afternoon.
Afterwards, we went to the 7th floor to help the Myeloma 5km Walk get organized. I helped them while Tony lay down on a bench in the room. He was comfortable for a bit. When I felt he had had enough, I gathered 82 hats, t-shirts, bibs & information sheets and packed them up and someone helped us carry them to my car downstairs. We drove to visit his mom to wait out the rush hour traffic and relax. At the table, he got sick again…….My heart aches watching him go thru this. He didn’t want food all day long.
This morning, he decided to stop taking the ridilin. He was told it would suppress appetite and didn’t take any today. I was with him all day and every couple of hours was looking for food. It’s a good sign. Was it because he had nothing to eat yesterday? Was it because he stopped the ridilin? I wonder.
Today, I’m not well. I’m battling a migraine and feeling nausea and have funny pains in my tummy.
Is it the long stressful week we had? Is it a bug we caught perhaps? Is it the hoping he gets approval for this new treatment ASAP?
June 30th will really mark the most memorable beginning of this whole journey. June 30th we were at a wedding outdoors and he had to find shade and sleep under a tree. That’s how tired he was. I’m thinking that was the day all this began.
HAVE YOU DONATED YET TO THE 5K WALK THIS SUNDAY????
If not, please help me help Tony help Princess Margaret Hospital.
We need more research to help find the cure. As best make this a chronic disease.
It’s approaching 1am and my headache is much better…..goodnite everyone.