11/28 exam

  The doctor said that I had growth including to lymph nodes in my back and that we should treat those like everything else. I had some growth.  The cancer and itching should be effected by the chemo (which I can't name right now).  Red blood count is staying  stable.  This one is 4 pills once a week.  I'm still going to have side-effect problems for a while.  My new medicine is VOTRIENT (not afinitor).   It attacks how a tumor gets nourishment.

Trying another direction

  My time off Afinitor has not full got me through the lingering side-effect.  The doctor has decided that I can't tolerated Afnitor and to go on to something else.  I'll get a scan Monday and see the doctor on the following Monday  (11/28) to decide to go a new type of medication depending if I had no growth or growth while I was off Afinitor.   If it no real new growth, it will be something that works like Afinitor but with other side-effects possible.  Or we'll go a different direction with something that works differently.

It's complicated!

I went to the doctor today while finishing the 3rd week off Afinitor due to my continuing to have greater weakness, itchiness, loss of sleep and coughing.  We're trying to time out the itchiness to heal after the week of Prednisone and weeks of cortisone cream.  The nurse practictioner is concluding that the weakness is due to my calcium being too high (11+) in my blood.  She proposed staying off one weak, giving me a monthly treatment for the calcium (a shot which may or may not be needed) and a transfusion (because my hemoglobin is 9+).  It's the morning after and I feel a bit better and not so disabled.  It should get a bit better for another day (on the transfusion) and for many days on the shot (actually just put into the transfusion IV).  We'll see!  Then I go in Monday to start Afinitor again.  Being off it, she explained, might make me worse in some days due to just having the tumors can cause many  problems like my coughing.

Side effects

  I'll be off Afinitor for the third and last week while hoping to get my skin to settle down.  My arms are healing well after the prednisone but other areas that  are more mild, but still itchy enough to keep me awake, have not settled down yet.  Once we go back on Afinitor, if the rash comes back then we'll use prednisone even though it's not generally recommended with Afinitor (or any steroid).  That is a general rule but it had worked for me so we'll try them together to try to subdue the itchy/rash side-effect.

Afinitor part deux

  I've been off for 6 days but still have the rash & itch to the point where I can't sleep now.  I'm also still very weak (I need a rest after getting the paper or taking out the trash).  Dang.

Afinitor side effects

  They're going to take me off Afinitor for a week due to my having so much of an itch and rash problem.  It's hard to sleep and needling me all the time.  My blood count was in between but a bit low so they want me to come back after the week off and get a couple pints.

Post-scan exam

  I had trivial growth so we were told to stay with the Afinitor.  Some lesions had died in the center which could be good.  I did have a low red blood count though so I had to stay quite a while and get a couple units of blood but I feel a bit better and may feel more so tomorrow and the next day.

Scan!

  I just got my scan today to see if the Afinitor is working.  I have three things working on my energy:  Thyroid blood reading was low some months ago so I'm taking a synthroid to bring that up.  Anemia that I had a transfusion for with a couple blood units and for which I'm eating much more vegetables.  Testosterone was low recently so they gave me a gel for that that I apply daily to my shoulders and back.

  My platelet count was good.  Now I have to eat well and try to keep it there!

Blood!

I emailed the doctor about the continuing extra weakness and we set up a test for the next day on the anemia and a possible transfusion of a couple units of blood. It took all day but the results are pretty dramatic. It took away the extra loss of endurance like having trouble doing about anything. It is supposed to get even better the next day and the next day as I assimilate the blood. Yay! Walks and volleyball may be back on the table.

anemia?

Besides the usual weakness I have some extra weakness (or lack of energy--I can still lift stuff it seems) from anemia. I'm eating various vegetable a lot, an iron pill (multivitamin) and v-8 juice but I've got no gains in the week since I started that. I see the doctor in a few days and he might do something more dramatic, like give me some blood to boost my red blood cell count. It's a side-effect of the Afinitor.

Cough

The doctor gave me a cough suppressant which works a good part of the time. It's a pill. It stifles the urge to cough somehow.

Afinitor 20 days in

I went to see the doc today and he gave me a prescription for my cough (yay!) and he said that everything looks good except I have some anemia. He suggested some items to eat to control it (green vegies, liver, etc.) first.

Afinitor

It seems that there are similar side-effects to what I was taking (Sutent) but probably less with the exception that you can get a cough and shortness of breath from a lung infection with Afinitor. I have to watch this closely to cut it off quickly if it comes up.

3rd Sutent Scan

My scan was not good so we switched to a new medicine: Afinitor. It has less side-effects in general and works very differently from Sutent.