Cycle 4 Week 1 Day 1 Carfilzomib/Dex and Day 1/21 Revlimid 10 mg - January 30 2013

Drove to St. Luke's Hospital in Twin Falls, Idaho this morning for my monthly visit with Dr. Padavanija and the beginning of Cycle 4 Carfilzomib/Dex. Roads were dry and the 135 mile drive pleasant.

Waiting for my appointment at St. Luke's Hospital January 30 2013.

Dr. Padavanija had just talked with Dr. Clay Smith at UCH (Aurora, Colorado) via telephone, so we were all on the same page.

Remember, during my last Cycle 3, we HELD carfilzomib (27 metered square) and cytoxin (500 mg) for low counts, so I have not had any chemo since 9 Jan 2013. However, I continued to take Cycle 3 Revlimid 10 mg finishing 22 Jan 2013.

History of Carfilzomib/Dex/Cytoxan/Revlimid USE (Each Cycle consists of 3 weeks (2 times per wk) followed by a rest week).

Cycle 1: Start 10 Oct 2012 with Revlimid 10 mg (1/21).

Cycle 2: Start 27 Nov 2012 with Revlimid 10 mg (1/21).

Cycle 3: Start 2 Jan 2012 with Revlimid 10 mg (1/21). Added Cytoxan 500 mg. HELD Carfilzomib and Cytoxan Week 3 of Cycle 3 for low counts and continued Revlimid 10 mg

Cycle 4: Start 30 Jan 2013 with Revlimid 10 mg (1/21). HELD Cytoxan until counts recover

My 30 Jan 2012 CBC results: WBC 2.2 (norms 4.5-11) slightly up , ANC 1.44 (norms 1.9-8.8) up , Hg 8.9 (norms 12-16) slightly down, Platelets 141 (norms 140-440) -woohoo normal), LDH 583 (St. Luke's norms 313-618) normal. 

Here is a chart looking at the values overtime.

Since my Hg remains low at 8.9 with an elevated MCV (mean corpuscular volume or the average size of a red blood cell) at 102.5, Dr. Padavanija drew a B12 and thyroid levels. I don't have those results yet. My Chem Panel was normal except of a slightly low Potassium (K at 3.4) and I was advised to eat more banana and potato).

Dr. Padavanija was in a agreement with conscious sedation for my next bone marrow biopsy and has scheduled it for 20 Feb 2013 at St. Luke's Hospital, Twin Falls, Idaho – YEA! At least I never have to look at that torture anymore.

Dr. Padavanija looked at the neck incision for my Bard Power Port which was placed 20 Dec 2013 and a stitch seems to be working itself out.

I also had a skull x-ray of the small hard lesion growing on my forehead and an x-ray of my left hip which hurts only when I lie on that side (results pending).

On to the Infusion Center where I was pleasantly surprised that they had ordered and obtained the un-foam padded Huber needle for my Bard Power Port along with plain tegaderm vs the tegaderm impregnated with white film which my skin reacts to. I've been putting Emla Cream (deadens the area they put this sorta big needle in to) on my port site and it works great for me.

I received my monthly dose of Aredia 30 mg. I remembered to take Claritin and a plain Tylenol with it, so I'm hoping I have few, if any, side effects this month.

Stayed at the motel in Twin Falls and woke in the night with an Aredia headache all over my head. I drank more water and went back to sleep. Returned to St. Luke's Hospital Infusion Center for my 2nd day of carfilzomid/dex. RN Vicki was able to get me in and out in less than an hour, which I am always appreciative of because of the 2 1/2 hour drive home to Mackay.

Was home by noon and went to get Kemmer at Ron's. Stopped at Ivies (grocery store) wearing my mask. I always try to go while the children are still in school to avoid their potential germs.

Came home and walked Kemmer 0.54 miles around the neighborhood. Not much of a walk, but I was tired.

UCH Follow-up Appointment in Aurora Colorado Day 249 After 2nd ASCT - January 22 2013

Jani and I went to UCH (University of Colorado Hospital) this morning and had my lab values along with my monthly SPEP blood tests drawn via my Bard Power Port. Per usual, my goofy Jani helped with the wait time.

 Who says two Polish girls can't fit in a single recliner???

RN Cara had me turn my neck to get the blood to flow out of my port.

My white blood cell count is even lower than last week at 1.9 (norms 4.5-11); hemoglobin slightly lower than last week at 9.0 (norms 12-16); platelets higher than last week at 106 (norms 140-440); and ANC (absolute neutrophil count) lower than last week at 1.0 (norms 1.9-8.8). This means I still need to protect myself with a mask and good hand washing.

My kidney function blood tests continue normal with a creatinine of 0.98 (norms 0.52-1.04); BUN 11 (norms 7-17) and GFR 58 (norms less than 60). 

My immunoglobulins ( reflection of my immune system) are still pretty much non-functioning on Day 249 after my 2nd Autologous Stem Cell Transplant). I asked when they will recover and I'm not clear, at all, when this will (if ever) occur.

The multiple myeloma SPEP blood test take several days, so I'll have to wait on those results per usual.

Had a nice visit with Dr. Clay Smith (UCH) and he answered all of our questions. Dr. Smith thought I looked tired, so at least we are on the same page with that - I am tired. He thinks this probably due to my hemoglobin value of 9.0 (norms 12-16).

He thinks I need to forego the added Cytoxan 500 mg weekly to see if my blood counts will recover. And if they do recover, maybe add Cytoxan 300 mg weekly. Might want to reduce Revlimid 10 mg to 5 mg, but he wants me to do one change at a time so we can see what happens. Dr. Smith thinks I should see a dermatologist for the small bump on my forehead and get it biopsied - oh joy. Continue on Fragmin 15,000 unit injections - I HATE those injections ONLY BECAUSE The pre-filled syringe needles are DULL DULL DULL! I should write the company a letter! 

Can continue dex schedule of: Wednesday's 20 mg; Thursday's 4 mg; and Sunday's 10 mg for a total of 34 mg per week.

As for the small bump on the right side of my forehead, Dr. Smith advised me to see a dermatologist and have it biopsied. 

Need to get another bone marrow biopsy in about a month to check where I'm at since I am a non-secretory or hyposecretory multiple myeloma patient. This means that my cancerous plasma cells don't send the usual blood test elements in to my bloodstream. Hence, I have to be followed with bone marrow biopsies - I've had nine (9) in 19 months since diagnosis May 2011. I told Dr. Smith I wouldn't have a bone marrow biopsy again without conscious sedation and they don't offer that option at UCH.

I really like Dr. Smith and he has an excellent memory. Me and Dr. Clay Smith, January 22 2013.

Jani and got hamburgers at the UCH Cafeteria and ate them outside in the brilliant, warm sunshine.

Waiting at Valet Parking UCH.

 Temperature at UCH this afternoon 66 degrees - felt wonderful!

Calendar January 9 to 24 2013

Cycle 3 Week 2 Day 2 Carfilzomib/Dex and Day 9/21 Revlimid 10 mg - January 10 2013

Received my intravenous carfilzomib and oral dex this morning at St. Luke's Hospital in Twin Falls and was on my way home to Mackay in a snowstorm by 8:45 AM.

I followed a snowplow for the first 30 miles which was the pits and would have given Bart (2006 Honda Pilot) pits in the windshield if I'd attempted to pass.

 Then from Shoshone to Carey, the road looked like this:

The road through the Craters of the Moon was interesting because the snowplow had come through from the opposite direction and filled my lane with more than a foot of snow. So, I drove in the oncoming lane watching for oncoming traffic (not much) and had to move over in to the deep snow in my lane - for 20 miles or so.

I made it home by 12:15 PM - just an hour longer than it normally takes me. But, I have to admit, I was TIRED. Stopped at my father's place to check on him and pick up Kemmer. He is fine and Kemmer was DELIGHTED to go home.

I also had a weird vision deal begin in both eyes. My central vision was clear, but around each eye I had flashing (moving) flickering lights that didn't go away even if I closed my eyes. I've never experienced anything like this before and I looked up the side effects of Cytoxan (took 500 mg yesterday) and the only thing different recently. Cytoxan can cause blurry vision and although the side effects didn't describe anything like I was experiencing, I was sure it was from Cytoxan. I decided to take 8 mg of Dex to see if that would help - IT DID. I had taken 4 mg of Dex with my carfilzomib this morning, so that made 12 mg for the day. 

We had 5-6 inches of new snow here in Mackay and I thought I'd take a nap and then get out there and move the snow in my driveway with my 4-wheeler with a snowblade. Well in to my nap, woke to Steve Marinac on his 4-wheeler with a snowblade clearing my snow - so nice and I'm not sure I was up to it.

Cycle 3, Week 2, Day 1 Carfilizomib, Dex, Cytoxan, and Day 8/21 Revlimid 10 mg - January 9 2013

Drove to St. Luke's Hospital in Twin Falls this morning. Left early as I anticipated icy roads through the Craters of the Moon and I was NOT disappointed.

My wbc today are LOW at 2.2 (norms 4.5-11); hemoglobin LOW at 9.6 (norms 12-15); platelets LOW at 76 (norms 140-440); and my absolute neutrophil count (ANC) LOW at 1.16 (norms 1.9-8.8). So, EVERYTHING is low today. Dr. Padavanija wants me to get my blood values checked Friday, 11 Jan 2013 at Lost Rivers Medical Center in Arco. She is anticipating that my values will be too low next Wednesday, 16 Jan 2013 to receive the carfilzomib and cytoxan - so, it might be held. I will still drive to Twin Falls on 16 Jan 2013 to be evaluated.

Surprisingly, I do not feel excessively tired with the hemoglobin of 9.6. I will have to be careful to wear a mask in public places and do good handwashing with an ANC of 1.16.

On a happier note, my comprehensive chem panel indicates normal kidney function with a creatinine of 0.89 (norms 0.53-1.05); BUN 10 (norms 7-17); BUN/CR Ratio 11 (norms 10-20); and GFR > 60 (norms > 60). I knew those abnormal values were from the Zolinza and once it cleared my system - I've been fine. My oncologists would argue that the values became normal because the percent of plasma cells in my bone marrow decreased from 60 % to 40%, so my bone marrow could do it's job more efficiently. 

Pharmacist, Debbie had my prescription of oral Cytoxan for me.

I have to be careful to drink at least 3 liters of water daily now that I'm taking cytoxan 500 mg (that's 10 - 50 mg tablets) by mouth weekly - all in one dose on Wednesday's. Cytoxan or cyclophosphamide can cause cystitis of the bladder, so fluids are essential. 

Cytoxan can also cause hair loss. So far, this is only my second dose and I still have my fragile new hair. However, if I lose my hair AGAIN - I'm okay with that.

RN Melisa gave me intravenous Aloxi 0.25mg (anti-nausea) because of the Cytoxan. And, I received 20 mg Dex intravenously along with my carfilzomib (27 metered square dosage).

I worked on my blog while I waited.

I'll be back tomorrow morning for my 2nd Day dose and then head home in a forecasted snow storm. I'll just go slow and get home.

Bone Marrow Plasma Cells down to 40 Percent from 60 Percent - January 2 2013

Chilly drive to St. Luke's Hospital MSTI, Twin Falls, Idaho with temperatures hovering at MINUS 12 degrees.  However, the roads were dry, skies blue, with sunshine.

Had blood drawn from my new Bard Power Port for the first time - all went fine except for the adhesive dressing they used to cover the Huber Needle access - which itched me. They took it off and replaced it with my Durapore silk tape.

Saw Dr. Padavanija and she had my bone marrow biopsy results from 20 Dec 2012. My plasma cell concentration had decreased from 60 percent (17 Oct 2012) to 40 percent after 2 cycles (a cycle is one month in duration) of carfilzomib/dex/revlimid 10 mg. She was able to speak with Raphael Foncesa, MD at Mayo Clinic Scottsdale, AZ during my appointment to get recommendations on how to proceed. Dr. Foncesa said he was hoping for a better response and now wanted to add Cytoxan to the carfilzomib/dex/revlimid and repeat bone marrow biopsy after 2 cycles.

So, off to the infusion room I trotted. I received the bone building medication, Aredia first at 30 mg vs the 90 mg that I had been receiving. I'm hoping this will reduce or eliminate the flu-like and tiredness that the higher dosage has caused. I have Terry, a 50 year old man from New Jersey who commented on my last Aredia administration to thank for the decreased dosage and the Lancet article supporting its use. Thanks Terry! PS I was born in New Jersey.

RN Brittany gave me IV Aloxi as a pre-treatment for the Cytoxan. Then, I got my 20 mg of Dex IV. Both Dr. Padavanija and Dr. Foncesa are in agreement that I can take more Dex during the week - I will start at 10 mg about 3 days after the 20 mg dose - this should help my tiredness.

I spent well over an hour on the phone with my specialty pharmacy trying to get a refill on my Fragmin 15, 000 units pre-filled injections...this does NOT make me a happy camper!

I got my first Cytoxan dose at 500 mg. I got it IV today, but will be taking it orally once my insurance approves it and it is delivered.

I arrived at St. Luke's MSTI at 10:20 AM and didn't get finished until 5:45 PM - a long day in the Infusion Center.

Went to Taco Bell and checked in to my motel - just 9 degrees outside. Fell asleep and woke with redness over my Bard Power Port site...perhaps I am allergic to the plastic on the Huber Needle. The old port site is red too - from the dressing they initially used yesterday.

My other labs from 2 Jan 2012 drawn prior to the start of Cycle 3 of carfilzomib/dex and the beginning dose of cytoxan.

My white blood cell count is low at 3.0 (norms 4.5-11); hemoglobin low at 10.4 (norms 12-16); platelets slightly low at 138 (norms 140-440); and Absolute Neutrophil Count (ANC) low at 1.73 (1.9-8.8).

My kidney function tests are ALL NORMAL on 2 Jan 2012

Creatinine 0.94 (norms 0.52-1.04); BUN 12 (norms 7-17); BUN/Creatinine Ratio 13 (norms 10-20) and GFR >60 (norms > 60).