So, How Do I Feel – March 28 2012

Today, I am 13 days post VDT-PACE Cycle 1 following my RELAPSE on 9 March 2012 on Day 178 of my 1^st autologous stem cell transplant. My oncologist warned me that the VDT-PACE (an inpatient stay of 96 hours with 7 continuous intravenous chemotherapy agents) would be rougher on me than it was before my autologous stem cell transplant on 13 Sept 2011 AND he wasn’t overstating it.

I could not tolerate the “T” of VDT-PACE or Thalidomide. I was completely disoriented and unable to function. I listed to the right when I walked and needed help to not fall over and It just wasn’t worth it to me, so I discontinued Thalidomide after Day 5 of the VDT-PACE Cycle 1. It took me about 48 hours to get my mind back, but I seem to be thinking clearly now. In addition, the Thalidomide gave me SEVERE neuropathy in my left foot and left leg. It felt like a burning iron on the bottom of my foot and radiated up the back of my leg to my thigh. This very unpleasant sensation improved after I stopped the Thalidomide. I continue to have minor neuropathy on the ends of my fingers and toes experienced mostly as numbness.

All of my bone marrow elements have tanked except for my hemoglobin. My platelets were 15 yesterday requiring a 2^nd platelet transfusion and my white blood cell count is only 0.2 or almost non-existent. I was given Neulasta on Day 7 of the VDT-PACE Cycle 1 and it has yet to “kick in” (said to work in 7-10 days, so may be any time now). However, I have experienced quite a bit of back, rib, and hip pain from the Neulasta. Claritin is helping and I should have taken it on the day of the Neulasta injection and then daily thereafter.

I experience headache and neck ache after each platelet transfusion.

My main issues are with gastritis. I had a bad stomach before I had multiple myeloma and all of the treatments hit my gastrointestinal tract with PROLONGED VIGOR. I don’t have any mouth lesions, but I feel lesions in my esophagus just below the back of my throat. My stomach feels better after I eat – so, I eat even though it hurts a tad on the way down. I am constantly aware of an aching gut which isn’t any fun.

I have NO ENERGY and I have trouble maintaining my upright blood pressure if just standing. I’m fine if I’m walking, although I haven’t been walking much.

I get muscle cramps in my left lower leg and foot that jerk me awake in PAIN. Stretching relieves the cramps, but momentarily I think I might DIE.

As my immune system dips, I have been trying to ward off a shingles outbreak with increased doses of famciclovir and have not had any lesions YET – I can feel them just below the surface of the skin experienced as pain and itching. I must have had the BEST CASE of chicken pox as a child…

I'm waiting on my hair to fall out from the Adriamycin portion of the VDT-PACE. When I had VDT-PACE in August 2011, my hair began to fall out on Day 14 after the start of the VDT-PACE which would mean that I can expect my hair to fall out again any time now, but it has not started yet. I'm looking forward to being bald again because I think I look a lot younger bald than I do with this mop of curly GRAY hair. At the rate I'm going, I may never have hair like I'm used to pre-multiple myeloma AGAIN - oh well~ maybe I should replace my blog photo.

And finally, I have the continued worry of my right atrial thrombus (blood clot) in my heart. I hope they come up with a solution for me. I continue daily Fragmin injections at ½ dose of 7,500 IU to thin my blood.

And the ADVENTURE continues.


I walked 0.56 miles this afternoon at a stroll pace, but at least, I was outside.