Tuesday, October 28, 2008

Super Strikes Again!

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I had a great conversation with Dr. Nathalie Johnson who is a hematologist (essentially a blood doctor) with the BC cancer agency - she spent about 30min with me. A high school friend of mine who is a statitition is working at the BC Cancer Agency and has hooked me up. I have received some great insight from him as well and will likely post it tomorrow. I had sent Dr. Johnson an email that outlined my story and we discussed where we were at in terms of staging and the fact that I had Grade 3. I'll only discuss the important points that I took from the conversation.
  • Maintenance Rituximab - she asked if it had been discussed yet (it hasn't) and said that I should ask my doctor about it. I will...apparently, some patients get this regiment every 3 months for 2 years post the treatment cycle that has been prescribed. This means that I could be getting treatment for 3 years. Holy Crap.
  • I asked about acupuncture, homeopathic remedies for nausea, avoiding sugar, avoiding white flour, etc ... Her response: "There is no evidence" ... but they say there is, again "there is no evidence". Ug. This bothers me...I spoke with the nutritionist who says follow the Canadian food guide...eat eat eat....I've spoken with several doctors now...eat, rest, drugs...What really bothers me is that I am not doing anything to help fight this. I should eat right...but not change my diet or avoid anything. Exercise should be kept reasonable...nothing to strenuous. I guess all I can really work on is my psychology... This is still bothersome and confusing.
  • I will lose my hair and it could start as early as 2 weeks after the first chemo treatment. That means that I could start losing my hair Thursday. I am pretty sure that I will be ok with that - but who knows. However, one thing that will change is other peoples perspective of me, and this has been very weird so far, as I have mentioned in other posts. People will start to look at me different and treat me different. One good thing is that it is the winter time and it is easily hidden with a toque (she said toque - so I know she is Canadian!!!..hahahaha). Funny isn't it...I have to hide it from others for their sake...She brought this up because it is a large source of stress and anxiety for a lot of patients...and that is very BAD. Which leads me to my next point...
  • Keep stress and anxiety low...try to maintain a normal life. Taken out of context, this sounds weird because I have cancer, how can I maintain a normal life? But, what she had to say was very comforting...always keep in mind that there is a plan in place that is being executed and it is the means to an end. All will be good in the end!
  • She has spoken with Dr. Gascoyne, who apparently is THE lymphoma pathologist in Canada. I will speak to Dr. Hamm about this. Keep in mind that any differences will likely not lead to a change in my treatment. I am interested in proceeding with this though, and will likely do so.
  • In terms of Rituximab - a wonder drug (this is part of my chemo) and it has increased survival rates across the board.
  • In terms of research...it is a really really good time - they are in the process of sequencing Lymphoma (mapping the very small genetic abnormalities) which will lead to the development of even more wonder drugs. I asked more about research (I will talk more about this below) and she directed me to the Lymphoma Research Foundation. I will spend some time on this site to see what is being done.
Radioactive man struck again...Diletta, Isabella and I headed across the border for some shopping and I set the detector off again. I didn't shut the border down this time, but did have to drive into the stand alone detector and then we had to go in to the office so they could test me again...I tested positive for Gallium 67 with a rating/score of 19.8. I'm not sure what the 19.8 is but I do know that the Gallium makes sense as I did have a Gallium scan. I was very surprised that I was detected again...I'll have to find out how long this crap can stay in my system (Dora - maybe you know?).

Cancer research - Does anyone wonder where all the millions and millions of dollars go that are raised to fight cancer? And what are 'they' researching? A cure? Drugs? Prevention? What should they be researching - I would think prevention...but all they look for is a cure...Why is that? Admittedly, I am not educated about this, but I plan to change that. As with myself, I feel as though I have to do something...but I want to ensure that what I do makes a difference. You will hear more about this.

I didn't meet with Manny (acupuncturist & more) today. Instead, we set up an appointment for tomorrow at 3pm. I will take what he says and discuss it with my doc on Monday.


1 comment:

Dora and Dave said...

Hi Jeff,

Gallium-67 has a half life of about 3 and a 1/2 days so this means that after this time half of the gallium in your body will decay and no longer be radioactive. Then after another 3 and 1/2 days, another half of the remaining radioactive gallium will decay and no longer be radioactive. This will continue until level of radioactive gallium is so low it's undetected. So it all really depends on how much gallium-67 they injected you with in the first place that will determine how long it will take to clear out.
As for the money that goes to cancer research I can talk to you forever about this!! Yes there are studies that look at prevention but people don't really care as much about this as they do to finding a cure right NOW for the cancer that people currently have!! Prevention is a funny thing, you don't think about it happens to you. As well, you have to factor in the role of the big pharmaceutical companies that want to sell drugs and the effects this has on where research is going. I believe prevention is the key. However, it is not that simple. It is definitely frustrating. Like I said I could go on and on...