Maintenance Therapy

As I mentioned in a previous posting, I will be starting maintenance chemotherapy soon. This drug - Revlimid - will help me to remain in remission longer. I have not started yet as the approval process is just commencing.

Approval process?? What is that? Are we, as Canadians, not entitled to medications and medical protocols that will help us when we are ill?

It may surprise you that cancer medication is no different than obtaining antibiotics when you have pneumonia. If you went to your doctor and were diagnosed with pneumonia, you would be given a prescription for antibiotics and you would head over to the pharmacy to fill it. If you were self-employed and had no medical plan, you would be expected to pay out-of-pocket for that medication. If you have a medical plan, you would pay 20% or a similar amount and your insurance company would cover the rest. The exception is for intervenous drugs that are administered in the hospital or by a health care professional in a home care environment. Many chemo drugs are now administered in pill form, and they have to be picked up by the patient at the pharmacy.

Revlimid for chemo maintenance therapy costs $8000.00 per month. The drug company has a compassionate program whereby they will fund some or all of the cost depending on your circumstances. They also screen to ensure you are a good candidate for their drug. They will conduct a telephone interview with me this week to determine if I am a suitable candidate. I am not sure what they will ask, but assume it will be related to my age, overall medical condition, whether I am of child-bearing age and considering having children, etc. I expect to have no difficulty in obtaining approval.

Once I have approval for the drug, the manufacturer will negotiate with my medical plan provider to determine if they will cover the drug, and at what percentage. Since maintenance chemo is not required for my treatment, but is an accepted protocol to extend remission, they may have an out. We expect them to cover it at 80%. We are also hopeful that the drug manufacturer will pick up the tab on the other 20%. If they do not, my medical plan has a catastrophic clause that I will only be out of pocket $3000 per year and 100% of the remainder will be covered. Phew! Fingers crossed!

Once I get approval, and start taking it, I will likely feel fatigued again and may become neutropenic. This means that my antibodies could become low and I will be unable to fight infection effectively. If this happens, I will have to be careful of public interactions again. :(

As I learn more, I will update my blog.

Delayed Reaction

My last post was September 10th and it was a quick, impersonal update on my medical status. Maybe you were wondering why I did not write something sooner. Well, it was because the news had an unexpected impact on me. I should have been elated at a status of full remission...and I was...for a brief period. I, shortly thereafter, found myself to be sad, down, and not really sure why.

I have thought a lot about it and think I have figured out what happened. I struggled to find a metaphor to use to explain it, and I think this one is close, although I dare say that unless you have walked in my shoes, you would not completely understand any of what I am going through.

Imagine that you are ready for the prom, or a special date...your hair is done, your dress is beautiful, your makeup perfect. You feel like a million bucks. Then you look outside and see the torrential rainstorm...and you know that by the time you get to the party, you will look a wreck...your hair will be flat, your mascara running and your silk dress covered in water spots. How depressing!

My situation is similar. A full remission is fantastic. The best possible outcome after the stem cell transplant. But the rainstorm -- the relapse -- is still looming. Not only that, but the proverbial clock is now ticking. Multiple myeloma is not curable. This is the beginning of a cycle of remission, relapse, remission, relapse for me. The length of my first remission will set the tone for the others that will follow.

Of course I hope for, and anticipate, a long remission, but the reality is that the average is just a few years. I felt happy that I had such a fantastic response, but felt sad that the reality of my situation was hitting me full force for the first time. Tick tock. Son of a bitch...it just isn't fair!

So I was feeling sorry for myself for a few weeks. I am entitled. It has been a year since my diagnosis and it just overwhelmed me. I am also over it now. I am feeling positive and energized again. :)

My situation has not changed, but my outlook on it has. I am ready to enjoy the remission period to its fullest extent, and will be ready for the next battle whenever it is time.

Full Remission!!!

I saw my oncologist on Monday and he provided me with fantastic news...my myeloma is in full remission. Yay!!

I am expecting that it will be a long remission. :)  To bolster my chances, I have elected to take maintenance chemotherapy. This will be a low-dose chemo that I will take for the duration of my remission.

I will be starting this therapy once I am approved for the compassionate program the drug manufacturer provides. Apparently the drug company will negotiate with my health insurance company and I am hopeful that insurance will cover 80%  and the drug company will waive the 20%. Since the drugs cost $8000/month, it is kind of important to have it covered. :)

 I am still battling side effects from my previous chemo treatments and hope that I can resolve all of them soon. I will be starting physio-therapy, acupuncture and massage therapy, and I have some good pain-killers to use in the meantime. :)

I feel good otherwise. Strong and healthy overall.

Sorry this post may come off a little "matter of fact", but I am over-tired today. I will write again when I am more chipper!:)