Day 29: So what treatment am I getting, and when?

It’s been a bit of a rollercoaster ride and much of it has been related to the doctors’ approach to my illness. My first doctor, the one who actually diagnosed Waldenstrom’s, told me that she suspects it before it was officially confirmed with the bone marrow test. She also told me that “if you are going to get cancer, this is the one to get” which, let’s be honest, is about as positive as you can be. When she did get the confirmation from the lab, she came and told me in person (I was in her hospital) but it was almost an aside, as in “Oh, and it has now been confirmed”. The confirmation didn’t surprise or shock me, but as she said it she also squeezed my thigh (she was sitting on bed next to me) and I remember thinking…”Whoa! Why do I need a hug? What has she actually just told me?

By that time, a lot of other results had come in as well, and I was ready to do some heavy Googling. I have already written about life expectancy (the obvious first question) and the 3.5 median survival period, which obviously knocked me.

My second visit was with the haematologist, whose approach to the whole matter was extremely relaxed and laid back. He advised treatment, but there was no panic or doom in our 90 minute visit. Craig was super impressed with this guy, and hoped that I would choose him as my leading doctor (I didn’t, or haven’t yet, but only because of logistics). When we left the appointment, Craig and I were on a high and we both said that the appointment could not have gone better.

Less than a week later we met with my oncologist, who is extremely clinical without being aloof. But she talks in the language of science, and chemo, and after effects and speaks in very finite terms. The thing though, it is not possible to speak in finite words about Waldenstrom because it is so rare, there are so few (relatively) studies on it, and every patient is different. So she suggested a very harsh treatment plan (known as R-CHOP), and I resisted (based on my talk with the haemotologist). She agreed to go and do more research (see?) and called me the next day with a “compromise” (DRC), which basically equals chemo, but less harsh.

Update: Ultimately, after even more research we settled on a cocktail of Rituximab and Bendamestine, over a 4-6 month treatment. This is proven to be the most effective combination for Waldenstrom patients, and surpasses the DRC protocol in its benefits. It is far, far superior to R-CHOP which is a very harsh treatment, and will more than likely ultimately cause irreversible heart damage.

If you have Waldenstrom (or any illness, I guess), prize number one is to get a doctor who specialises in that illness. No rocket science advice there. But if you are in an area that doesn’t have specialists due to the rarity of your condition, then you owe it to yourself to become your own best advocate. You need to do the research, and you need to find a doctor who will listen to what you find. I also very strongly recommend turning to Facebook or other online community. Chances are you will find a forum or a group of others with your condition, and their experience and advice will prove invaluable. I was incredibly lucky and thrilled to find a FB group of 2,400 (!!!!) members who are somehow affected by Waldenstrom (either because they suffer from it or a family member has it etc). This group has proven to be an invaluable source of information (and inspiration) and has even put me in touch with other South Africans who have WM. (We know have a Whatsapp group where we exchange info, so if you are in SA and want to join, let me know!)

If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.

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Eve D.
46yo mother of two. Serial entrepreneur. Huge procrastinator. Million ideas, few hours. Needs constant reminding that thinking of doing something is not the same as actually doing it. Co-existing with a super-rare lymphoma (and winning!) . Winning at life in general, actually.

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