Rounds 5 through 7

So the myeloma markers weren't dropping and Dr. Manning told us that while he initially placed Karl at stage 1, now he was downgrading him to stage 2. It was a disappointing and disheartening appointment. We really didn't know what was going to happen. Then along came Pam with news.

Pam is the pharmacist who works at the Ambulatory Clinic at the Health Sciences Centre, which is where Karl gets his chemo. We initially met her prior to the first CyBorD round. At that time she explained  the 28 day process for each chemo round, discribed the side effects of each drug and how we could manage them, and also completed all the paperwork to ask Karl's medical plan to cover the drugs which aren't normally covered, such as his daily shots of Lovenox, which would be costing a small fortune if Pam hadn't worked her magic to convince the drug company to provide it.

Now she talked to us about thalidomide. I'd heard about thalidomide years ago from the perspective of it being a terrible drug which expectant mothers had been prescribed to help cope with morning sickness. Apparently it worked really well to prevent nausea in the mothers, but the horrible side effect was it caused gross birth defects for their babies, especially missing limbs. If you had asked me before Karl's diagnosis what I thought had likely happened to thalidomide, I would have without a doubt said that I hoped and assumed it had stopped being produced.

When Dr. Vasanthan first introduced the possibility of Multiple Myeloma, which was a week before he told us for sure and we shared with our families, as I said in a previous post, I made the mistake of seeking the opinion of Dr. Google. That's when I saw that thalidomide hadn't disappeared from use. It was alive and well as a chemo drug for MM. It was very upsetting to read that it might be something Karl could have to use as a treatment. Pam reduced that fear for us. Revlimid is a derivative of thalidomide, and it is one of the derivatives that is used to treat MM. It is commonly used as a maintenance drug when a patient goes in remission, but sometimes it is used to replace or supplement CyBorD in the induction stage. They were proposing using Revlimid in place of cyclophosphamide. The difference would be that he would have to take it every day instead of only every Friday, and instead of getting the prescription filled at the pharmacy here in Eastport, it would have to be couriered in from New Brunswick, because there is only one pharmacy in Atlantic Canada which is permitted to handle and sell the drug. Despite being a  miracle drug for MM, Revlimid is still a frightening substance. Pam had to explain all the side effects, then Karl had to read a summary of her explanation, and then they both had to sign that it had all been reviewed. After Pam convinced Karl's medical plan to provide Revlimid, he got a call from RevAid asking him questions to be sure that Pam had indeed explained all the precautions related to the drug. He wouldn't have been approved to have his prescription filled if he had answered their questions incorrectly. Then he got a call from the NB pharmacy to arrange the courier delivery. He gets one of these calls each month prior to the drug being shipped. If for any reason the entire shipment is not used, the pharmacy reminds him that they will arrange a courier to pick the unused pills up and return it to them. Karl has read that the actual cost of a month's supply of Revlimid is $17000.

Now the good news. After chemo round 5, which was the first round with Revlimid, the Myeloma markers dropped considerably, and they continued to drop during rounds 6 and 7. Karl is ready to start the next step, which is a stem cell transplant. We go to the first appointment today!

Comments

  1. Unknown27 September 2017 at 23:19

    Thanks God Form Pam!! You guys have done an amazing job at coping with all this!

    ReplyDelete
  2. Karl13 October 2017 at 19:42

    The stress level started to rise a little when we discovered one of the Myeloma markers we weren't specifically following, a monoclonal protein wasn't dropping as expected. Like I said from the beginning, have faith in your doctors, that's why they are specialists, and with cancer specialists, they are connected to a much larger team of support specialists. They get things done rather quickly.

    They changed one of my cancer drugs from Cyclophosphamide to Revlimid and in two rounds, I was referred for stem cell treatment. This was our first real goal achieved.

    ReplyDelete

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