Hello, As of this month, I'm done with chemo for my SLL.
The scans are clear. No organs were ever affected, and the lymph nodes have either shrunken to the point where they are invisible on the CT scan, or show up as being normal.
Nine months and two hospital stays later, my onc said that I will return to see him in two months.
I was reaching the limit on taking the Treanda, and the fact that the scans showed excellent results made it all the better. Better than my half-empty glass mindset would have allowed. But, seeing is believing.
A word about the drug Dapsone... I don't know how commonly this is prescribed, but, I had a severe reaction to it after taking it for several months.
It seems that, in some people, you can develope what's called methemoglobinemia.... a big name for a simple, but potentially deadly condition.
In a nutshell, your hemoglobin is replaced with methemoglobin, which does not collect oxygen molecules, and therefore does not oxygenate red blood cells.
I brought this up several times before, two months later, I was in ICU with atrial fibrilation. The docs concentrated on my heart and lungs, which were totally fine. The pulmonologist, whom I have to thank for his wisdom, checked for methemoglobin, and, sure enough, I was at 22%, and 50% can kill.
I was starving for oxygen, and couldn't walk ten feet without my O2 level dropping to 87% and my heart racing to 180.
The cure was to, obviously, stop the Dapsone, and go on oxygen for several weeks, which I did and made a full recovery.
Apparently this is quite rare. Out of the four docs looking after me, not one has seen such a case, although they've all heard about and know about this condition.
If you are on Dapsone, and you feel short of breath if you shouldn't for any other reason, check into the Dapsone. If I had known about this two months or more before it became so bad, I would have saved myself quite a nasty episode.
Good luck to you all,
Tony.
