<p>My father has had CLL for 20 years. His last bloodwork showed a hemoglobin of 9 (anemia) and elevated white blood cells. His spleen is enlarged and the doctor said he has stage 3 CLL and wants to start him on chemotherapy. He is a very active 82 year old. </p>
<p>The doctor told him about a new IV chemotherapy which you get intravenously for 2 days each month OR pills (he would have to take 9 pills every morning that you take every day for a year or more). Both have possible side effect of fatique and nausea. </p>
<p>My dad chose the pills but the doctor kind of pushed the IV treatment…my dad is convinced that the doctor stands to make a lot more money from the IV chemo because he gives it in his office and bills for it.</p>
<p>Anyone have experience with CLL? Any advice is appreciated!!</p>
<p>My sister was diagnosed with CML (chronic myelogenous leukemia) 15 years ago when she was ~30. She took part in the clinic trials that resulted in FDA approval of Gleevec and has taken the pills ever since. She is healthy & leads an active normal life. I am not familiar with the new IV chemotherapy.</p>
<p>Maybe the doctor does not have financial motives. It takes an extremely high degree of motivation and dedication to take 9 pills every day for a year. What would the consequences be if your dad forgot a day or took 7 pills instead of 9? The IV is only two days a month and then he’s done. Sounds like that may be easier. Have you investigated his costs for pills vs IV?</p>
<p>It’s not about the cost…it’s about quality of life. Does it make more sense to not be treated and feel relatively well than to be treated and feel ill and debilitated? I hate chemotherapy…my mother had stomach cancer and I watched her wither away and suffer. So tough to think of another parent in the same boat!!!</p>
<p>Sorry for what your family is facing. I have no expertise/experience in your father’s specific illness, though I have faced similar dilemmas with other diseases. The Drs. should be able to help you and your father compute this cost benefit analysis with more specific info. What is the prognosis with or without treatment? How might the side effects be different between the 2 methods of chemo? If the treatment proves to be debilitating, can it be discontinued at any time? Does age play a role in how likely the treatment is to be effective? How will the efficacy of the treatment be assessed and how often? Do any other pre-existing health issues impact prognosis and tolerance of chemo?
These calculations are highly personal. People who are nearing the end of their life expectancy might prefer fewer days, with less hurdles to get over. Some would rather try everything first and see if they can tolerate it. I know that there is a great ability to keep people comfortable through major illnesses today, whether they opt for treatment or not. Your father is lucky to have you to help him sort this out. All the best as you move forward.</p>
<p>The word chemo is terrifying. The treatment is awful. But afterward…it is over. The treatment. Life begins again…albeit slowly. As one who’s mother had CLL and was untreated (I wasn’t consulted) why give up on life early? Oh, a CLL death isn’t pretty.</p>
<p>I take nine pills a day for one thing or another. It doesn’t bother me a bit. </p>
<p>Your dad may feel the same way about taking pills. He also may be more comfortable with a therapy that you take at home, where the possible side effects of nausea and fatigue would be less inconvenient than they would be if he had to go out.</p>
<p>So maybe he made a good decision. </p>
<p>On the other hand, is it possible that he would prefer the IV therapy but is reluctant to agree to it because of the potential difficulty of getting home by driving or taking a bus or taxi if he is experiencing side effects after a treatment? Has someone offered to drive him (and provide barf bags)? And has that person assured him that two trips a month to the doctor is no inconvenience (and maybe even offers a welcome chance to chat)?</p>
<p>I ask these things because if it was my father, he would have chosen the pills no matter what his real preference to avoid inconveniencing anyone else.</p>